20106 Speech/Lang Summer - Speech & Language Therapy in ...
20106 Speech/Lang Summer - Speech & Language Therapy in ...
20106 Speech/Lang Summer - Speech & Language Therapy in ...
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summer ��������<br />
Choice and<br />
participation<br />
The heart of<br />
our service<br />
Management<br />
Cr<strong>in</strong>ge to credit<br />
Professional<br />
role<br />
So much<br />
to offer<br />
From<br />
PEG to<br />
porridge<br />
One man’s story<br />
Disability<br />
and stigma<br />
An unequal life<br />
Conference<br />
report<br />
Collaboration<br />
counts<br />
My top<br />
resources<br />
Tips from people<br />
with aphasia<br />
How I<br />
put users<br />
<strong>in</strong> the<br />
driv<strong>in</strong>g seat<br />
U S E R � F R I E N D L Y<br />
ISSN 1368-2105<br />
http://www�speechmag�com
<strong>Summer</strong> 03 speechmag<br />
“Just wanted to say that I th<strong>in</strong>k the website is<br />
excellent. We have a returner to practice start<strong>in</strong>g<br />
with us, and I was able to use the <strong>in</strong>dex of<br />
articles to po<strong>in</strong>t her <strong>in</strong> the right direction.”<br />
(e-mail from chief speech and language therapist Christ<strong>in</strong>e Mills)<br />
In need of <strong>in</strong>spiration?<br />
Do<strong>in</strong>g a literature review?<br />
Look<strong>in</strong>g to update your practice?<br />
Or simply want<strong>in</strong>g to locate an article you<br />
read recently?<br />
Our cumulative <strong>in</strong>dex facility is there to help.<br />
The speechmag website enables you to:<br />
View the contents pages of the last four issues<br />
Search the cumulative <strong>in</strong>dex for abstracts of<br />
previous articles by author name and subject<br />
Order copies of up to 5 back articles onl<strong>in</strong>e.<br />
New article: Know the person, not the problem<br />
Fiona Davis, a speech and language therapy student who<br />
has a cleft palate jo<strong>in</strong>ed a weekend camp for young people<br />
with cleft lip and palate as a volunteer. While the many<br />
activities and <strong>in</strong>formal opportunities were appreciated by<br />
the children, the benefits of a perspective beyond the cl<strong>in</strong>ic<br />
are also clear.<br />
Plus<br />
The editor has selected the previous articles you might<br />
particularly want to look at if you liked the articles <strong>in</strong> the<br />
<strong>Summer</strong> 03 issue of <strong>Speech</strong> & <strong>Lang</strong>uage <strong>Therapy</strong><br />
<strong>in</strong> Practice. If you don’t have previous issues of the magaz<strong>in</strong>e,<br />
check out the abstracts on this website and take<br />
advantage of our new article order<strong>in</strong>g service.<br />
If you liked...<br />
Lorra<strong>in</strong>e Speirs, see (009) Hickman, J. (Autumn<br />
1997) ALD and dysphagia: issues and practice.<br />
Val Levens, look at (037) Levens, V., Good<strong>in</strong>g, S. &<br />
Good<strong>in</strong>g, J. (Autumn 1998) An adult with Rett’s<br />
Syndrome: the feel<strong>in</strong>gs and outcomes.<br />
Helen McFarlane, what about (088) Hamilton, L. &<br />
McKenzie, K. (W<strong>in</strong>ter 1999) Mov<strong>in</strong>g on: life stories.<br />
Margaret White, try (138) White, M.: Uncharted<br />
territory, (139) McCormick, C.: Shared care, (140)<br />
Freeman, L.: An ever-chang<strong>in</strong>g story. All from<br />
W<strong>in</strong>ter 2000, How I manage progressive<br />
neurological disorders.<br />
Sarah Earle, see (060) Leonard, A. (Spr<strong>in</strong>g 1999)<br />
Right From The Start: The end of the (bad) beg<strong>in</strong>n<strong>in</strong>g?<br />
The I CAN conference report, consider (181) Hall, A.<br />
(Spr<strong>in</strong>g 2002) The early <strong>in</strong>tervention gap – can we<br />
fix it? (Yes, I CAN!)<br />
Also on the site – news about future issues, repr<strong>in</strong>ted<br />
articles from previous issues, l<strong>in</strong>ks to other sites of<br />
practical value and <strong>in</strong>formation about writ<strong>in</strong>g for the<br />
magaz<strong>in</strong>e. Pay us a visit soon.<br />
Remember – you can also subscribe<br />
or renew onl<strong>in</strong>e via a secure server!<br />
www.speechmag.com<br />
W<strong>in</strong> a Stickerpack: Safe<br />
Eat<strong>in</strong>g and<br />
Swallow<strong>in</strong>g<br />
Would you like easy access to materials<br />
for personalised eat<strong>in</strong>g and swallow<strong>in</strong>g<br />
advice charts? Help is at hand <strong>in</strong> the<br />
form of a pack of 44 re-usable<br />
coloured stickers (cover<strong>in</strong>g diet,<br />
fluids, medication, position<strong>in</strong>g<br />
and general safety advice) and an<br />
explanatory book, blank stickers,<br />
photocopiable display boards and protective<br />
plastic covers. Developed by a speech and language<br />
therapist and suitable for children and adults with any<br />
eat<strong>in</strong>g and swallow<strong>in</strong>g difficulty, the pack has been ref<strong>in</strong>ed to<br />
reflect the comments of staff <strong>in</strong>volved <strong>in</strong> its six month pilot on<br />
two hospital sites.<br />
The Stickerpack normally retails at £50 but the Dementia Services<br />
Development Centre is mak<strong>in</strong>g TWO copies available FREE to<br />
lucky readers of <strong>Speech</strong> & <strong>Lang</strong>uage <strong>Therapy</strong> <strong>in</strong> Practice.<br />
To enter, simply send your name and address marked ‘<strong>Speech</strong> &<br />
<strong>Lang</strong>uage <strong>Therapy</strong> <strong>in</strong> Practice - Stickerpack offer’ to Marion<br />
Munro, Publications Secretary, Dementia Services Development<br />
Centre, University of Stirl<strong>in</strong>g, Stirl<strong>in</strong>g FK9 4LA. The clos<strong>in</strong>g date<br />
for receipt of entries is 25th July and the w<strong>in</strong>ners will be notified<br />
by 1st August.<br />
The Stickerpack and a publications list are available from the<br />
Dementia Services Development Centre at the above address,<br />
tel. 01786 467740.<br />
WIN the Diagnostic<br />
Evaluation of Articulation<br />
and Phonology (DEAP)<br />
Are you look<strong>in</strong>g for a<br />
comprehensive, UK<br />
standardised assessment<br />
of articulation and<br />
phonology that will<br />
guide you towards the<br />
most effective therapy?<br />
The DEAP <strong>in</strong>cludes a<br />
diagnostic screener<br />
which directs you to the<br />
ma<strong>in</strong> articulation,<br />
oro-motor, phonological<br />
and <strong>in</strong>consistency<br />
assessments as appropriate. Co-authored by Barbara Dodd, the<br />
DEAP is for children aged 3 years 0 months to 6 years 11 months.<br />
The normal retail price is £204.67 but The Psychological<br />
Corporation is offer<strong>in</strong>g a complete DEAP kit FREE to a lucky<br />
reader of <strong>Speech</strong> and language <strong>Therapy</strong> <strong>in</strong> Practice.<br />
For your chance to w<strong>in</strong>, simply write your name and address on a<br />
postcard with the title ‘DEAP Reader Offer’ and post to: Liz Akers, The<br />
Psychological Corporation, 32 Jamestown Road, London NW1 7BY.<br />
The clos<strong>in</strong>g date for receipt of entries is 25th July and the w<strong>in</strong>ner<br />
will be notified by 1st August.<br />
The Diagnostic Evaluation of Articulation and Phonology is<br />
available along with a free catalogue from The Psychological<br />
Corporation, tel. 020 7424 4512, www.tpc-<strong>in</strong>ternational.com.<br />
Josie Roy has scooped two prizes <strong>in</strong> the Spr<strong>in</strong>g 03 issue - the set of<br />
four Bungalow software programmes from Propellor multimedia<br />
and a copy of <strong>Speech</strong>mark’s Semantic Workbooks! The other lucky<br />
w<strong>in</strong>ner of the Bungalow software is Judith Hibberd (two programmes),<br />
and the other Semantic Workbooks go to Kev<strong>in</strong> Borrett<br />
and Gill Sampson. Julia Hannah, S.M. L<strong>in</strong>es, Helen Broderick and<br />
Lauren Court w<strong>in</strong> Speak<strong>in</strong>g & Listen<strong>in</strong>g Through Narrative (2 nd ed)<br />
from Black Sheep Press. Congratulations to you all.<br />
READEROFFERSREADEROFFERSREADEROFFERSREADEROFFERS
www.speechmag.com<br />
SUMMER 2003<br />
(publication date 26th May)<br />
ISSN 1368-2105<br />
Published by:<br />
Avril Nicoll<br />
33 K<strong>in</strong>near Square<br />
Laurencekirk<br />
AB30 1UL<br />
Tel/fax 01561 377415<br />
e-mail: avrilnicoll@speechmag.com<br />
Design & Production:<br />
Fiona Reid<br />
Fiona Reid Design<br />
Straitbraes Farm<br />
St. Cyrus<br />
Montrose<br />
Website design and ma<strong>in</strong>tenance:<br />
Nick Bowles<br />
Webcraft UK Ltd<br />
www.webcraft.co.uk<br />
Pr<strong>in</strong>t<strong>in</strong>g:<br />
Manor Creative<br />
7 & 8, Edison Road<br />
Eastbourne<br />
East Sussex<br />
BN23 6PT<br />
Editor:<br />
Avril Nicoll RegMRCSLT<br />
Subscriptions and advertis<strong>in</strong>g:<br />
Tel / fax 01561 377415<br />
©Avril Nicoll 2003<br />
Contents of <strong>Speech</strong> & <strong>Lang</strong>uage<br />
<strong>Therapy</strong> <strong>in</strong> Practice reflect the views<br />
of the <strong>in</strong>dividual authors and not<br />
necessarily the views of the publisher.<br />
Publication of advertisements is not<br />
an endorsement of the advertiser<br />
or product or service offered.<br />
Any contributions may also appear<br />
on the magaz<strong>in</strong>e’s <strong>in</strong>ternet site.<br />
Cover picture by Paul Reid, posed by<br />
model. See p.24<br />
CONTENTS SUMMER 2003<br />
Inside cover <strong>Summer</strong> �� speechmag<br />
Reader offers<br />
W<strong>in</strong> the Diagnostic Evaluation of Articulation and<br />
Phonology, Stickerpacks: Eat<strong>in</strong>g and Swallow<strong>in</strong>g and<br />
Speak<strong>in</strong>g, Listen<strong>in</strong>g and Understand<strong>in</strong>g - Games for<br />
Young Children (p.13).<br />
� News / Comment<br />
� The heart of our service<br />
“User <strong>in</strong>volvement is not just the latest trend <strong>in</strong> service<br />
provision but an essential part of gett<strong>in</strong>g any service<br />
right for people.”<br />
How do we enable people with learn<strong>in</strong>g difficulties to<br />
make more choices, participate more <strong>in</strong> their community,<br />
and develop their skills and competencies? <strong>Speech</strong><br />
and language therapy has come a long way, but Helen<br />
McFarlane is already tak<strong>in</strong>g the next step.<br />
� I know what people need from<br />
my service – don’t I?<br />
“Comparison, shar<strong>in</strong>g and explor<strong>in</strong>g perspectives<br />
prompts lively debate. Actions can be agreed on -<br />
which areas to target and how. However, <strong>in</strong> all of this it<br />
is the process that is the most valuable. We need to<br />
ensure we do not rush for outcomes at the risk of miss<strong>in</strong>g<br />
out the gold that is revealed <strong>in</strong> gett<strong>in</strong>g to them.”<br />
Val Levens and her team have been seek<strong>in</strong>g users’ views for over<br />
10 years and, more importantly, chang<strong>in</strong>g services as a result.<br />
�� Reviews<br />
Head <strong>in</strong>jury, persistent communication difficulties, social<br />
skills and learn<strong>in</strong>g disability.<br />
�� I CAN make collaboration count<br />
“Collaboration that works comb<strong>in</strong>es strategic lead with<br />
backup on the ground - hardly rocket science but, <strong>in</strong><br />
practice, we know how difficult it can be to achieve, and we<br />
need to be aware of what works so we can do more of it.”<br />
Avril Nicoll attends the 7th I CAN national conference.<br />
�� Noth<strong>in</strong>g more to offer?<br />
“As a therapist it is very easy to feel daunted... we need to<br />
take a step back, not to see a dysarthria need<strong>in</strong>g therapy,<br />
but to see the person with the dysarthria. We can sometimes<br />
get too bogged down <strong>in</strong> the specific problem without<br />
see<strong>in</strong>g the overall view. We should not only be deal<strong>in</strong>g<br />
with the problem but with the way this affects the person,<br />
their ‘groups’ and the way they live their life.”<br />
Draw<strong>in</strong>g on quotes from her qualitative research, Margaret<br />
White argues that we should be actively facilitat<strong>in</strong>g<br />
and offer<strong>in</strong>g support to people with progressive<br />
disorders, even when traditional ‘therapy’ has ended.<br />
�� So much to say<br />
“This all takes a lot of time and effort but, when you<br />
can’t do a lot for yourself, what you can do becomes<br />
your only mission.”<br />
In shar<strong>in</strong>g his experience of Motor Neurone Disease,<br />
David Parker raises understand<strong>in</strong>g of the positive th<strong>in</strong>gs<br />
that support people affected by a progressive disorder.<br />
�� Oats not so simple<br />
“Assessment and management of dysphagia should be<br />
a true test of person centred plann<strong>in</strong>g and reflective<br />
practice, as decisions made have far reach<strong>in</strong>g<br />
consequences. Non-oral feed<strong>in</strong>g has implications for<br />
quality of life, sociability and self-esteem, not only for<br />
the person concerned, but also impact<strong>in</strong>g on carers<br />
and family.”<br />
Lorra<strong>in</strong>e Speirs tells us about Robert, who had<br />
exist<strong>in</strong>g eat<strong>in</strong>g and dr<strong>in</strong>k<strong>in</strong>g limitations due to cerebral<br />
palsy exacerbated by a stroke at the age of 75. Three<br />
years later, his PEG was removed and he could enjoy<br />
his porridge aga<strong>in</strong>.<br />
�� Sociological perspectives on<br />
<strong>in</strong>equality series (�)<br />
Disability and stigma: an unequal<br />
life<br />
“...examples of good practice might <strong>in</strong>clude the<br />
provision of accessible <strong>in</strong>formation for disabled clients,<br />
parents and relevant others, and the <strong>in</strong>volvement of<br />
disabled people as advisors at all stages of policy<br />
development and review with<strong>in</strong> cl<strong>in</strong>ical practice.”<br />
The Disability Rights Commission campaign asks, is a<br />
disabled person only half a person? Sarah Earle<br />
explores how we can break down barriers and at the<br />
same time play an important role <strong>in</strong> treatment and<br />
rehabilitation.<br />
�� Further read<strong>in</strong>g<br />
Preschool language, bra<strong>in</strong> <strong>in</strong>jury, profound disability,<br />
Down Syndrome, dysphonia.<br />
�� COVER STORY<br />
How I put users <strong>in</strong> the driv<strong>in</strong>g seat<br />
“How many people can you fit <strong>in</strong> a M<strong>in</strong>i? A<br />
m<strong>in</strong>d-numb<strong>in</strong>g n<strong>in</strong>eteen! Of course, laden with<br />
so many <strong>in</strong>dividuals, driv<strong>in</strong>g is virtually<br />
impossible. And the same is true of<br />
organisations with many stakeholders, unless it<br />
is absolutely clear who is <strong>in</strong> charge of driv<strong>in</strong>g.”<br />
(Cecilia Yardley)<br />
<strong>Speech</strong> and language therapists have a lot <strong>in</strong><br />
common with driv<strong>in</strong>g <strong>in</strong>structors but do we<br />
fully understand what it means to put our<br />
users <strong>in</strong> the driv<strong>in</strong>g seat? Ann Auchterlonie,<br />
Carole Higg<strong>in</strong>bottom and Cecilia Yardley<br />
suggest why we should accelerate the process.<br />
Back cover<br />
My Top Resources<br />
“Even close friends and family can f<strong>in</strong>d it hard to have<br />
and develop conversations, so a book about your life<br />
and important events, people and achievements can be<br />
a start<strong>in</strong>g po<strong>in</strong>t for conversations and shar<strong>in</strong>g stories.”<br />
Tips for conversations from people with aphasia, for<br />
people with aphasia.<br />
IN FUTURE ISSUES<br />
DYSPHAGIA • AUTISM • STAMMERING • INTENSIVE INTERACTION<br />
SOCIOLOGY • SURE START • RESEARCH • APHASIA<br />
SPEECH & LANGUAGE THERAPY IN PRACTICE SUMMER 2003 �
news<br />
Community schools<br />
<strong>Speech</strong> and language therapy is one service<br />
targeted <strong>in</strong> the government’s plans for<br />
schools to provide a full range of community<br />
services by 2006.<br />
At least one school <strong>in</strong> every local education<br />
authority <strong>in</strong> England is be<strong>in</strong>g funded to<br />
provide childcare, health and social care,<br />
lifelong learn<strong>in</strong>g opportunities, family<br />
learn<strong>in</strong>g, parent<strong>in</strong>g support, study support,<br />
sports and arts and <strong>in</strong>formation and<br />
communication technology access.<br />
Fund<strong>in</strong>g will be targeted <strong>in</strong>itially at the<br />
most disadvantaged areas then rolled out.<br />
The idea is to enable schools to focus on<br />
their core role of rais<strong>in</strong>g standards for<br />
pupils by support<strong>in</strong>g children’s learn<strong>in</strong>g<br />
through encourag<strong>in</strong>g onsite provision of<br />
services like speech and language therapy<br />
so children do not miss out on school<strong>in</strong>g to<br />
travel to appo<strong>in</strong>tments.<br />
www.teachernet.gov.uk/extendedschools<br />
For the preschool stage, children’s centres<br />
are planned for disadvantaged communities<br />
<strong>in</strong> England, to <strong>in</strong>clude high quality childcare<br />
Talk<strong>in</strong>g po<strong>in</strong>t<br />
A new collaborative website on the needs of children with<br />
speech and language difficulties aims to provide a first stop<br />
for <strong>in</strong>formation and support.<br />
The website - which will be live from Monday 2nd June - is split<br />
for parents and professionals but users are encouraged to view<br />
the whole site. It <strong>in</strong>cludes details of organisations and professionals<br />
who can help, useful publications, frequently asked questions,<br />
fact sheets, news and an <strong>in</strong>teractive element. Developed by the<br />
charities I CAN and Afasic with the professional body the Royal<br />
College of <strong>Speech</strong> & <strong>Lang</strong>uage Therapists, with f<strong>in</strong>ance provided<br />
by BT and Lloyds TSB Foundation for England and Wales, the site<br />
will be subject to ongo<strong>in</strong>g evaluation and development.<br />
Comment<strong>in</strong>g on the development Gill Edelman, chief executive<br />
at I CAN, said, “Research shows awareness and understand<strong>in</strong>g<br />
of speech and language difficulties is low, and people f<strong>in</strong>d it<br />
hard to access <strong>in</strong>formation. This site is a huge step forward <strong>in</strong><br />
provid<strong>in</strong>g parents and professionals with vital, quick and accessible<br />
<strong>in</strong>formation.”<br />
www.talk<strong>in</strong>gpo<strong>in</strong>t.org.uk<br />
In a separate move, the Afasic website has also had a revamp,<br />
with more publications now available onl<strong>in</strong>e. Afasic is the UK<br />
charity represent<strong>in</strong>g children and young adults with speech,<br />
language and communication impairments.<br />
www.afasic.org.uk<br />
�<br />
SPEECH & LANGUAGE THERAPY IN PRACTICE SUMMER 2003<br />
and early education, parent<strong>in</strong>g support,<br />
employment advice and outreach to parents,<br />
and child and family health services.<br />
www.surestart.gov.uk/<strong>in</strong>foDocs/Childrens<br />
Centre2.doc<br />
The government believes new research<br />
lends support to its policy of develop<strong>in</strong>g<br />
<strong>in</strong>tegrated centres. A lead <strong>in</strong>vestigator for<br />
the Effective Provision of Preschool<br />
Education research said, “This is the first<br />
large scale longitud<strong>in</strong>al study <strong>in</strong> the UK to<br />
provide detailed, hard evidence on the<br />
effects of preschool education on children’s<br />
social and <strong>in</strong>tellectual development at the<br />
start of school. It has revealed the way learn<strong>in</strong>g<br />
experiences at home comb<strong>in</strong>e with good<br />
quality education to provide a boost to the<br />
development of all children – especially<br />
those from disadvantaged backgrounds. The<br />
study also explores the effective practices <strong>in</strong><br />
preschool sett<strong>in</strong>gs which appear to make a<br />
real difference to children’s development.”<br />
www.ioe.ac.uk/projects/eppe / www.basicskills-observatory.co.uk<br />
Kids’<br />
charities<br />
to merge<br />
Two charities which<br />
provide opportunities<br />
for <strong>in</strong>clusion through<br />
safe play facilities for<br />
disabled children are<br />
plann<strong>in</strong>g to merge.<br />
It is expected that the<br />
six adventure playgrounds<br />
<strong>in</strong> London,<br />
<strong>in</strong>formation service and<br />
national tra<strong>in</strong><strong>in</strong>g and<br />
consultancy network<br />
run by Kidsactive will be<br />
<strong>in</strong>tegrated with<strong>in</strong> KIDS<br />
over the next few<br />
months.<br />
KIDS is a national charity<br />
dedicated to help<strong>in</strong>g<br />
children with disabilities<br />
and their families. It is a<br />
lead<strong>in</strong>g supporter of<br />
<strong>in</strong>clusions policies.<br />
KIDS, tel. 020 7359 3635,<br />
www.kids-onl<strong>in</strong>e.org.uk<br />
Autism guidel<strong>in</strong>es<br />
A national plan of expert recommendations for children with autism<br />
aims to avoid the current ‘postcode lottery’ for those affected.<br />
Developed by a group of professionals, parents and voluntary sector<br />
representatives, the guidel<strong>in</strong>es recommend that there should<br />
be a positive response to parental concerns at all times and awareness<br />
tra<strong>in</strong><strong>in</strong>g for community based staff work<strong>in</strong>g with children. A<br />
general developmental assessment should be the first stage of the<br />
process. Where autism is suspected, children should receive a<br />
multi-agency assessment, and a key worker should be appo<strong>in</strong>ted.<br />
The guidel<strong>in</strong>es also cover report<strong>in</strong>g procedures and the need to<br />
have a Family Care Plan <strong>in</strong> place with<strong>in</strong> six weeks of the end of the<br />
multi-agency assessment. The report recommends that with<strong>in</strong> the<br />
next 18 months all local areas should establish a coord<strong>in</strong>at<strong>in</strong>g<br />
group to review services and identify tra<strong>in</strong><strong>in</strong>g needs. They should<br />
also have a tra<strong>in</strong>ed professional to advise on specific <strong>in</strong>terventions<br />
for autism spectrum disorder and a specially tra<strong>in</strong>ed teacher with<br />
resource back<strong>in</strong>g who can be consulted <strong>in</strong> the sett<strong>in</strong>g up of <strong>in</strong>dividual<br />
education plans.<br />
The chair of the National Initiative for Autism: Screen<strong>in</strong>g and<br />
Assessment core work<strong>in</strong>g group said, “The report provides a template<br />
for multi-agency teams so that families and professionals<br />
know what is agreed as current (2002) best cl<strong>in</strong>ical practice irrespective<br />
of location across the UK.” In welcom<strong>in</strong>g the guidel<strong>in</strong>es,<br />
the National Autistic Society highlighted the focus on support for<br />
the whole family, multi-agency work<strong>in</strong>g and plann<strong>in</strong>g and autismspecific<br />
tra<strong>in</strong><strong>in</strong>g.<br />
Appendices <strong>in</strong>clude references for a variety of assessment tools,<br />
reviews of current practice, therapies, <strong>in</strong>tervention and literature,<br />
proformas of timeframes, a management plan, and a cost table.<br />
www.nas.org.uk/profess.niasa.html<br />
Down’s syndrome<br />
and <strong>in</strong>clusion Photo courtesy of the Down’s Syndrome Association<br />
Inclusion of children with Down’s syndrome is be<strong>in</strong>g supported by<br />
an education pack for ma<strong>in</strong>stream schools.<br />
The Down’s Syndrome Association resource is designed to meet the<br />
needs of teachers with little time or specialist knowledge and <strong>in</strong>cludes<br />
<strong>in</strong>formation on communication and deal<strong>in</strong>g with challeng<strong>in</strong>g behaviour.<br />
Chief executive Carol Boys said, “Our feedback from education<br />
staff and parents is that there is a desperate need for practical support<br />
that can be provided free to all schools who need it. This takes the<br />
pressure off the teach<strong>in</strong>g professionals and also off the parents who<br />
have had to become the experts themselves, not only research<strong>in</strong>g and<br />
advis<strong>in</strong>g on teach<strong>in</strong>g methods but frequently hav<strong>in</strong>g to pay for the<br />
limited range of materials previously available.”<br />
The pack has been distributed to all Local Education Authorities and<br />
is available to download free from the Down’s Syndrome<br />
Association’s website.<br />
www.downs-syndrome.org.uk
End of life<br />
A nurse with a long established <strong>in</strong>terest <strong>in</strong> end of life decision<br />
mak<strong>in</strong>g has set up a website to provide objective<br />
<strong>in</strong>formation to health professionals and stimulate debate.<br />
Ann Moran said, “I have spoken to a range of groups<br />
on this issue and the problem with the debate <strong>in</strong> the<br />
UK is that it has become polarised. This proves very<br />
unhelpful to health professionals try<strong>in</strong>g to obta<strong>in</strong> a<br />
clear understand<strong>in</strong>g of the issues.” Contents <strong>in</strong>clude<br />
<strong>in</strong>formation on liv<strong>in</strong>g wills, decisions to withdraw or<br />
withhold life prolong<strong>in</strong>g treatment and a survey<br />
which will gather evidence reflect<strong>in</strong>g the views and<br />
experiences of a range of health professionals<br />
<strong>in</strong>volved <strong>in</strong> this area of care.<br />
www.www.endoflifeissues.org<br />
No time to lose<br />
The National Service Framework for Long Term Conditions<br />
must address the unique characteristics of motor neurone<br />
disease if it is to provide any real benefit to people with<br />
the condition, accord<strong>in</strong>g to a lead<strong>in</strong>g charity.<br />
The Motor Neurone Disease Association is highlight<strong>in</strong>g<br />
four critical areas for action under the banner ‘No<br />
Time to Lose’: early diagnosis, coord<strong>in</strong>ated specialist<br />
services, access to specific cl<strong>in</strong>ical <strong>in</strong>terventions and<br />
support for <strong>in</strong>formal carers. The chief executive of the<br />
association sits on one of the work<strong>in</strong>g groups advis<strong>in</strong>g<br />
the government on how the framework should be<br />
constructed. It is due to be published <strong>in</strong> 2004 with a 10<br />
year implementation period from 2005.<br />
www.mndassociation.org<br />
School website praised<br />
A school for children with severe learn<strong>in</strong>g difficulties<br />
and profound and multiple needs has had its website<br />
shortlisted for an <strong>in</strong>ternational web award.<br />
Priorywoods School <strong>in</strong> Middlesborough has developed a<br />
website which <strong>in</strong>cludes educational resource materials,<br />
downloadable worksheets and a kids-only area. One<br />
class has symbols and photographs of them act<strong>in</strong>g out<br />
their favourite story, the Three Bears, and there are<br />
downloadable switch activated videos of popstars to<br />
promote cause and effect.<br />
The website is one of 12 shortlisted for the 2003 Cable<br />
and Wireless Childnet Awards.<br />
www.priorywoods.middlesborough.sch.uk<br />
www.childnetawards.org<br />
Count us <strong>in</strong><br />
An onl<strong>in</strong>e conference centre is br<strong>in</strong>g<strong>in</strong>g together service<br />
users, service providers and policy makers from<br />
around the world to discuss mental health.<br />
In July 2003 the Mental Health Foundation / Foundation<br />
for People with Learn<strong>in</strong>g Disabilities conference Count<br />
us <strong>in</strong>: the mental health needs of children with learn<strong>in</strong>g<br />
disabilities will <strong>in</strong>clude themes of services, policies and<br />
practices, and transition to adult services. Registration is<br />
free at www.connects.org.uk/conferences and, <strong>in</strong> addition<br />
to papers, there is the opportunity to participate <strong>in</strong><br />
discussion.<br />
See also www.mentalhealth.org.uk and<br />
www.learn<strong>in</strong>gdisabilities.org.uk.<br />
Correction<br />
Please note the correct spell<strong>in</strong>g of Bickiepegs, supplier<br />
of the Doidy cups recommended <strong>in</strong> Rachel Howarth’s<br />
top resources <strong>in</strong> the Spr<strong>in</strong>g 03 issue.<br />
www.bickiepegs.co.uk<br />
Avril Nicoll�<br />
Editor<br />
�� K<strong>in</strong>near Square<br />
Laurencekirk<br />
AB�� �UL<br />
tel/ansa/fax<br />
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e�mail<br />
avrilnicoll@speechmag�com<br />
...comment...<br />
news & comment<br />
User�friendly<br />
A few years ago my experience of part of the NHS made me so angry I jo<strong>in</strong>ed a<br />
consumer group, started a campaign and am now one of a group of lay people<br />
and professionals work<strong>in</strong>g together to br<strong>in</strong>g about improvements <strong>in</strong> services.<br />
Whether the personal issue is war, global warm<strong>in</strong>g, school closures or dog<br />
foul<strong>in</strong>g, there comes a po<strong>in</strong>t when we get active, and speech and language<br />
therapy is no exception. Val Levens (p.8) describes the phenomenon of “people<br />
who have had cause to compla<strong>in</strong> to our service be<strong>in</strong>g the most giv<strong>in</strong>g and<br />
energetic <strong>in</strong> shar<strong>in</strong>g their ideas”. This shouldn’t really surprise us. We know<br />
from our own experience that when we compla<strong>in</strong> it isn’t to get compensation<br />
or even an apology, but to prevent the same th<strong>in</strong>g happen<strong>in</strong>g to someone else.<br />
The wish to make th<strong>in</strong>gs better for other people is fairly universal, but people<br />
vary <strong>in</strong> how strongly they feel and how skilled and able they are to do this.<br />
David Parker (p.17) and Robert (Lorra<strong>in</strong>e Speirs, p.18) wanted their experiences<br />
to be published to <strong>in</strong>spire and encourage others. Sadly, neither is around to see<br />
the f<strong>in</strong>al result, and I am grateful to their families who were keen for<br />
publication to go ahead. On read<strong>in</strong>g David Parker’s article, Margaret White<br />
(p.14) commented that she would feel honoured for her article to appear<br />
alongside his - “So many people say<strong>in</strong>g the same th<strong>in</strong>g. Why aren’t we listen<strong>in</strong>g?”<br />
Carole Higg<strong>in</strong>bottom (p.26) f<strong>in</strong>ds it is easier to listen and adopt a more<br />
holistic approach when operat<strong>in</strong>g outside the pressurised NHS system.<br />
Work<strong>in</strong>g for the National Autistic Society she is encouraged to adapt to the<br />
chang<strong>in</strong>g needs of her client group. Cecilia Yardley (p.27) reports on how<br />
Speakability has changed its emphasis <strong>in</strong> recognition of the fact that speech<br />
and language therapy is very important - but then the aphasic person has to<br />
get on with the rest of their life. At Connect the focus is on empower<strong>in</strong>g<br />
people with aphasia; their users’ commitment to work<strong>in</strong>g together to help<br />
others is evident on our back page.<br />
At the start of my career I remember the urge to ‘cure and care’ and,<br />
although I’ve learnt a lot, I have to confess it has never entirely gone away.<br />
However, as Sarah Earle (p.21) po<strong>in</strong>ts out, this attitude <strong>in</strong>advertently<br />
contributes to the process of disablement and we need to move further<br />
towards a way of work<strong>in</strong>g that reflects the social model of disability. That<br />
the profession is mak<strong>in</strong>g progress is evident to me, almost issue to issue, and<br />
Helen McFarlane (p.4) is well ahead with her work with adults with learn<strong>in</strong>g<br />
disabilities. To her, user <strong>in</strong>volvement is not a trendy term, but someth<strong>in</strong>g<br />
fundamental to gett<strong>in</strong>g a service right.<br />
User <strong>in</strong>volvement is also a process, not someth<strong>in</strong>g that is achieved <strong>in</strong> one go<br />
as Denise Ford (I CAN conference, p.12) has found. Initially parents were kept<br />
at a ‘safe’ distance, but now staff and parents attend study days together, to<br />
everyone’s benefit. Ann Auchterlonie (p.25) believes that <strong>in</strong>volv<strong>in</strong>g our<br />
children and young people and their parents as active participants has an<br />
impact long after therapy has ended.<br />
Personal experience shows me how successful user <strong>in</strong>volvement can be when<br />
parties respect and strive to understand each other. So, how user-friendly are you?<br />
SPEECH & LANGUAGE THERAPY IN PRACTICE SUMMER 2003 �
�<br />
user <strong>in</strong>volvement<br />
The heart of<br />
How do we enable people with<br />
learn<strong>in</strong>g difficulties to make<br />
more choices, participate more<br />
<strong>in</strong> their community, and develop<br />
their skills and competencies?<br />
<strong>Speech</strong> and language therapy<br />
has come a long way, but Helen<br />
McFarlane is already tak<strong>in</strong>g the<br />
next step and putt<strong>in</strong>g people<br />
with learn<strong>in</strong>g difficulties and<br />
their families at the heart of<br />
service plann<strong>in</strong>g for better lives<br />
<strong>in</strong> the community.<br />
Here, she expla<strong>in</strong>s why ‘user<br />
<strong>in</strong>volvement’ is not just the latest<br />
trend but an essential part of<br />
gett<strong>in</strong>g any service right.<br />
Read this<br />
if you want to • make your written communication more<br />
accessible<br />
• move away from traditional communication<br />
group therapy<br />
• broaden your understand<strong>in</strong>g of work<strong>in</strong>g<br />
<strong>in</strong> the community<br />
SPEECH & LANGUAGE THERAPY IN PRACTICE SUMMER 2003<br />
✓<br />
I have recently come back to my job. I work as a<br />
speech and language therapist for people with<br />
learn<strong>in</strong>g difficulties who live <strong>in</strong> South Glasgow.<br />
For the past two years I was work<strong>in</strong>g for three<br />
organisations <strong>in</strong> the voluntary sector:<br />
• Enable Glasgow branch,<br />
• Fair Deal For 1 <strong>in</strong> 100 and<br />
• The Advocacy Project.<br />
My job was to start a user <strong>in</strong>volvement project<br />
called Plann<strong>in</strong>g Together. I worked with Laura<br />
Alexander, a parent activist who is a campaigner<br />
for change for people with learn<strong>in</strong>g difficulties and<br />
their families.<br />
The aim of the Plann<strong>in</strong>g Together project was to<br />
put people with learn<strong>in</strong>g difficulties and their families<br />
at the heart of service plann<strong>in</strong>g for better lives<br />
<strong>in</strong> the community. Services might <strong>in</strong>clude leisure,<br />
education (such as colleges), health, respite/short<br />
breaks and jobs/employment.<br />
User <strong>in</strong>volvement is not just the latest trend <strong>in</strong> service<br />
provision but an essential part of gett<strong>in</strong>g any<br />
service right for people.<br />
In speech and language therapy, it has long been<br />
good practice to <strong>in</strong>volve the client <strong>in</strong> sett<strong>in</strong>g goals<br />
and agree<strong>in</strong>g a contract of care. Our own professional<br />
standards (Communicat<strong>in</strong>g Quality 2) state<br />
that<br />
“A client centred approach must be adopted,<br />
respect<strong>in</strong>g the <strong>in</strong>dividual’s needs and op<strong>in</strong>ions<br />
and promot<strong>in</strong>g his/her active participation <strong>in</strong> any<br />
<strong>in</strong>tervention and the decision-mak<strong>in</strong>g processes<br />
associated with it.” (RCSLT, 1996).<br />
Furthermore,<br />
“the active role of carers is seen as essential, with<br />
therapists support<strong>in</strong>g their <strong>in</strong>volvement.”<br />
However, a significant amount of speech and language<br />
therapy is delivered via staff tra<strong>in</strong><strong>in</strong>g.The<br />
challenge for speech and language therapy, then,<br />
with the policies of “same as you” <strong>in</strong> Scotland and<br />
“valu<strong>in</strong>g people” <strong>in</strong> England and Wales is to<br />
<strong>in</strong>volve people with a learn<strong>in</strong>g difficulty at all levels<br />
<strong>in</strong> our service. It is no longer acceptable to <strong>in</strong>volve<br />
people only <strong>in</strong> our more traditional approaches of<br />
offer<strong>in</strong>g episodes of therapy activity.<br />
In Glasgow we have developed a service process which<br />
shows who we provide a direct speech and language<br />
therapy service to and who receives a service via staff<br />
tra<strong>in</strong><strong>in</strong>g.
user <strong>in</strong>volvement<br />
our service<br />
Tra<strong>in</strong><strong>in</strong>g <strong>in</strong>volves design, deliver<strong>in</strong>g/teach<strong>in</strong>g and<br />
evaluat<strong>in</strong>g. There are a number of questions we<br />
should ask ourselves to aim to <strong>in</strong>volve people who<br />
rely on our services <strong>in</strong> all stages of provid<strong>in</strong>g a service<br />
via tra<strong>in</strong><strong>in</strong>g:<br />
1. It is important for us to ask people with learn<strong>in</strong>g<br />
difficulties and families: “what do you want to know<br />
about communication?” and “what do you want<br />
your staff to know?”<br />
2. How can we <strong>in</strong>volve people with learn<strong>in</strong>g difficulties<br />
<strong>in</strong> teach<strong>in</strong>g on courses?<br />
3. Can <strong>in</strong>dividuals be supported to be co-tutors, can<br />
we use video, photos and pictures if people would<br />
rather not be <strong>in</strong> a crowd of people they don’t<br />
know, can we use people’s stories and quotes or<br />
experiences as teach<strong>in</strong>g aids? Not as traditional<br />
“case studies” but by jo<strong>in</strong>tly devis<strong>in</strong>g tra<strong>in</strong><strong>in</strong>g activities<br />
and materials.<br />
4. Can we <strong>in</strong>clude people with learn<strong>in</strong>g difficulties<br />
and families as participants on our courses?<br />
5. Are the handouts we use produced <strong>in</strong> simple<br />
language with graphics to help aid understand<strong>in</strong>g?<br />
6. Are the times that we run courses appropriate<br />
for families with car<strong>in</strong>g responsibilities?<br />
(In Glasgow we are liais<strong>in</strong>g with family members to<br />
adapt the foundation course that we run. So far<br />
over 300 staff have accessed this tra<strong>in</strong><strong>in</strong>g but only a<br />
handful of families. We are runn<strong>in</strong>g a course specifically<br />
for family members next month start<strong>in</strong>g at<br />
10.15 and f<strong>in</strong>ish<strong>in</strong>g at 2.15pm to fit <strong>in</strong> with times<br />
when their sons/daughters are attend<strong>in</strong>g their day<br />
service.)<br />
7. When we evaluate tra<strong>in</strong><strong>in</strong>g do we focus on the<br />
experience of the client and look for evidence of<br />
the person be<strong>in</strong>g able to:<br />
• make more choices,<br />
• participate more <strong>in</strong> their community,<br />
• develop or make better use of skills and<br />
competencies?<br />
These are some of the five accomplishments that<br />
O’Brien identified as long ago as 1987 as ways to<br />
measure how effective a service is for people with<br />
I KNOW BEST<br />
learn<strong>in</strong>g difficulties. They have stood the test of time<br />
and rema<strong>in</strong> as relevant today as we strive for improved<br />
opportunities for people with learn<strong>in</strong>g difficulties.<br />
The speech and language therapy service for adults<br />
with learn<strong>in</strong>g difficulties <strong>in</strong> Glasgow <strong>in</strong>cludes 10<br />
speech and language therapists. We have a range<br />
of grades and experience and we work <strong>in</strong> local<br />
areas and/or specialties. Each senior therapist is the<br />
lead therapist for specific areas of work, for example,<br />
student placements and liaison with the local<br />
speech and language therapy education establishment,<br />
audit, tra<strong>in</strong><strong>in</strong>g, work<strong>in</strong>g with people with<br />
complex needs and so on. This role does not mean<br />
you are the only therapist who undertakes work <strong>in</strong><br />
that area, but you provide support and advice to<br />
other colleagues and you may <strong>in</strong>itiate work <strong>in</strong> the<br />
area that you lead.<br />
As the lead therapist for user <strong>in</strong>volvement, I am<br />
able to cont<strong>in</strong>ue to support the work of my former<br />
colleague at Plann<strong>in</strong>g Together and to encourage<br />
the local speech and language therapists to get<br />
<strong>in</strong>volved <strong>in</strong> provid<strong>in</strong>g communication advice and<br />
support for user groups. Dur<strong>in</strong>g my secondment I<br />
learned a great deal and I am now work<strong>in</strong>g as the<br />
lead speech and language therapist on user<br />
<strong>in</strong>volvement. I would like to share some of my<br />
thoughts and learn<strong>in</strong>g with you.<br />
Some of the lessons I have learnt have implications<br />
for us as speech and language therapists and as<br />
experts <strong>in</strong> communication. Others apply to us as<br />
staff who work for the NHS, education, social work<br />
and/or other statutory agencies.<br />
1. People with learn<strong>in</strong>g difficulties<br />
and their families are the<br />
experts about themselves.<br />
Our advice must be based on listen<strong>in</strong>g to what the<br />
person with learn<strong>in</strong>g difficulties and/or their family<br />
want and need from us. Our advice will be much<br />
more practical and much more likely to be acted<br />
upon if we genu<strong>in</strong>ely f<strong>in</strong>d out what the person<br />
wants and feels about their own communication<br />
successes and needs.<br />
Even if the services make it easier for us to visit at<br />
the day centre or group home it is vital to make<br />
l<strong>in</strong>ks with family members. Paid staff come and go<br />
but family members are always present and often<br />
have the highest concern. �<br />
SPEECH & LANGUAGE THERAPY IN PRACTICE SUMMER 2003 �
�<br />
�<br />
user <strong>in</strong>volvement<br />
2. People with learn<strong>in</strong>g<br />
difficulties and their families<br />
rely on the professionals to<br />
provide good quality, up-to-date<br />
<strong>in</strong>formation that is easy to read<br />
and understand.<br />
Whilst work<strong>in</strong>g at Plann<strong>in</strong>g Together I was amazed at<br />
how little <strong>in</strong>formation was available to people with<br />
learn<strong>in</strong>g difficulties and their families. In this age of<br />
communication with e-mail and the <strong>in</strong>ternet at many<br />
workplaces, with an emphasis on <strong>in</strong>formation<br />
through newsletters, team brief and a major cycle of<br />
team meet<strong>in</strong>gs, people who rely on our services are<br />
often the last to know of any changes. There were so<br />
many stories of people phon<strong>in</strong>g to speak to a key<br />
worker or other professional, to be told “Oh, s/he has<br />
left. Can I help?” I wonder if, as speech and language<br />
therapists, we rout<strong>in</strong>ely let people know about what<br />
we are do<strong>in</strong>g, new staff, maternity cover and so on?<br />
Perhaps we can produce a speech and language<br />
therapy newsletter or encourage our learn<strong>in</strong>g disability<br />
team, day services or other services to do so?<br />
A newsletter us<strong>in</strong>g simple language, photos and<br />
symbols/graphics would be the most accessible and<br />
help to promote total communication approaches.<br />
3.The voluntary sector offer a<br />
range of services, activities,<br />
<strong>in</strong>formation and advocacy - BUT<br />
have no direct access to names<br />
and addresses and rely on<br />
statutory services to pass on<br />
<strong>in</strong>formation.<br />
I was amazed at how many projects and <strong>in</strong>itiatives<br />
I found and collaborated with when I worked <strong>in</strong><br />
the voluntary sector. There are campaign<strong>in</strong>g organisations<br />
<strong>in</strong>clud<strong>in</strong>g People First, ACE, pamis; there<br />
are clubs and social groups run by volunteers and<br />
there are <strong>in</strong>formation services. One th<strong>in</strong>g that they<br />
all have <strong>in</strong> common is the desire to attract new<br />
members, and often ongo<strong>in</strong>g fund<strong>in</strong>g depends on<br />
it. However, with no direct access to the names and<br />
addresses that the NHS or social work hold, organisations<br />
rely on word of mouth and general advertis<strong>in</strong>g.<br />
Part of our role could be to ensure we are up-todate<br />
with know<strong>in</strong>g what is <strong>in</strong> our area and gett<strong>in</strong>g<br />
the teams we work <strong>in</strong> to provide <strong>in</strong>formation to<br />
families about what support and opportunities are<br />
available. For example, do our screen<strong>in</strong>g checks or<br />
<strong>in</strong>itial visit schedules <strong>in</strong>clude space for mak<strong>in</strong>g sure<br />
people have this <strong>in</strong>formation?<br />
4.The message of total<br />
communication approaches can<br />
be more powerfully made by<br />
connect<strong>in</strong>g to the user<br />
<strong>in</strong>volvement agenda.<br />
SPEECH & LANGUAGE THERAPY IN PRACTICE SUMMER 2003<br />
GGrraapphhiiccss<br />
Most speech and language therapy services for<br />
adults with learn<strong>in</strong>g difficulties have undergone a<br />
significant shift towards a social model of disability<br />
(van der Gaag, 1998). This has <strong>in</strong>cluded an emphasis<br />
on tra<strong>in</strong><strong>in</strong>g for communication partners and on<br />
<strong>in</strong>fluenc<strong>in</strong>g the communication environment.<br />
However this work can sometimes be hampered by<br />
the perception that speech and language therapy is<br />
for fix<strong>in</strong>g the person with a communication disorder.<br />
We could be more effective by connect<strong>in</strong>g the work<br />
we do with the campaigns by people with learn<strong>in</strong>g<br />
difficulties themselves. People First, The Tenants<br />
Action Group of Key Hous<strong>in</strong>g and many other self<br />
advocacy groups campaign to get read-easy <strong>in</strong>formation<br />
available and promote the use of photos<br />
and graphics for m<strong>in</strong>utes, agendas and so on.<br />
<strong>Lang</strong>uage is another issue. When speech and language<br />
therapists advise us<strong>in</strong>g ‘symbols’, we can be<br />
met by resistance (“that’s childish”; “they’re just as<br />
complicated to understand as speech”). In contrast,<br />
‘graphics’ is a much more widely used word. It connects<br />
to the cool and highly valued world of computers.<br />
Perhaps we might be more successful <strong>in</strong> gett<strong>in</strong>g our<br />
message across if we use the word ‘graphics’<br />
<strong>in</strong>stead of ‘symbols’ to recommend photos, l<strong>in</strong>e<br />
draw<strong>in</strong>gs, Boardmaker and so on? I found some<br />
excellent examples of m<strong>in</strong>utes and agendas be<strong>in</strong>g<br />
accompanied by graphics. Support can also be provided<br />
to help <strong>in</strong>dividuals with significant communication<br />
difficulties take full part <strong>in</strong> consultation and conferences<br />
through graphic facilitation. Here, one<br />
person draws key images to pick out the ma<strong>in</strong> po<strong>in</strong>ts<br />
and summarises what has been said by referr<strong>in</strong>g back<br />
to the draw<strong>in</strong>gs.<br />
5. Total communication can be<br />
<strong>in</strong>cluded as a practical approach<br />
<strong>in</strong> response to listen<strong>in</strong>g to what<br />
people with learn<strong>in</strong>g difficulties<br />
themselves say they want to<br />
know more about.<br />
Issues identified by groups such as People First,<br />
T.A.G. and ACE (Enable) <strong>in</strong>clude:<br />
- gett<strong>in</strong>g and keep<strong>in</strong>g a job<br />
- sexuality and relationships<br />
- stopp<strong>in</strong>g bully<strong>in</strong>g and harassment<br />
- human rights, values and learn<strong>in</strong>g from history<br />
- be<strong>in</strong>g part of the local community.<br />
As lead therapist for user <strong>in</strong>volvement I have helped<br />
to devise and run an anti-bully<strong>in</strong>g group at one of<br />
the local day centres, I have become a co-tra<strong>in</strong>er for<br />
the loss and bereavement tra<strong>in</strong><strong>in</strong>g that is offered <strong>in</strong><br />
Glasgow and I co-teach an even<strong>in</strong>g class about social<br />
<strong>in</strong>clusion at a local college, called Gett<strong>in</strong>g Involved.<br />
Effective communication is key to <strong>in</strong>clud<strong>in</strong>g people<br />
with learn<strong>in</strong>g difficulties <strong>in</strong> all of these learn<strong>in</strong>g experiences.<br />
Apply<strong>in</strong>g total communication <strong>in</strong> such ways<br />
seems to be a much more user-led way of promot<strong>in</strong>g
gestures, simple speech, objects and graphics than<br />
the days of speech and language therapists runn<strong>in</strong>g<br />
“communication groups”.<br />
I hope that what I have learned from my experience<br />
will enable the speech and language therapy<br />
service <strong>in</strong> Glasgow to respond to and reflect the<br />
needs of people who rely on our services. More<br />
than that, we will actively engage people with<br />
learn<strong>in</strong>g difficulties <strong>in</strong> develop<strong>in</strong>g and evaluat<strong>in</strong>g<br />
our services.<br />
Helen McFarlane is a speech and language therapist<br />
with Glasgow Learn<strong>in</strong>g Disability Partnership.<br />
She has also worked with people with learn<strong>in</strong>g disabilities<br />
<strong>in</strong> Wigan, South Devon and Bristol, been a<br />
jo<strong>in</strong>t tra<strong>in</strong><strong>in</strong>g officer for Gloucestershire learn<strong>in</strong>g<br />
disability social work and health services, and <strong>in</strong><br />
1999 completed a masters <strong>in</strong> education.<br />
References<br />
Department of Health (2001) Valu<strong>in</strong>g people: a new<br />
strategy for learn<strong>in</strong>g disability for the 21st century.<br />
O’Brien, J. (1987) A Guide to life-style plann<strong>in</strong>g. In<br />
B. Wilcox & G. Bellamy (Eds) A comprehensive guide<br />
to the activities catalogue: An alternative curriculum<br />
for adults with severe disabilities. Baltimore<br />
Paul H. Brookes publish<strong>in</strong>g Co.<br />
RCSLT (1996) Communicat<strong>in</strong>g Quality 2. Royal<br />
College of <strong>Speech</strong> & <strong>Lang</strong>uage Therapists, London.<br />
Scottish Executive (2000) The same as you?<br />
(Available <strong>in</strong> full at<br />
www.scotland.gov.uk/ldsr/docs/tsay-00.asp.)<br />
van der Gaag, A. (1998) Communication skills and<br />
adults with learn<strong>in</strong>g disabilities: elim<strong>in</strong>at<strong>in</strong>g professional<br />
myopia. British Journal of Learn<strong>in</strong>g<br />
Disabilities 26; 88-93.<br />
Acknowledgements<br />
The Boardmaker software used <strong>in</strong> this article is<br />
from Mayer Johnson. It is available <strong>in</strong> the UK from<br />
Don Johnson Special Needs, tel. 01925 241642.<br />
Useful websites<br />
ACE (Enable) www.enable.org.uk/ace<br />
PAMIS (Profound and Multiple Impairment Service)<br />
www.dundee.ac.uk/pamis/pamis.html#What<br />
People First Scotland www.firstscotland.fsnet.co.uk<br />
Quality Action Group<br />
www.bt<strong>in</strong>ternet.com/~qualityaction<br />
Scottish Consortium of Learn<strong>in</strong>g Disabilities<br />
www.scld.org.uk<br />
T.A.G. www.keyhous<strong>in</strong>g.org/tag<br />
Reflections<br />
• Do I offer tra<strong>in</strong><strong>in</strong>g to staff at<br />
the expense of work<strong>in</strong>g with<br />
families?<br />
• Do I rout<strong>in</strong>ely let clients know<br />
about changes <strong>in</strong> service<br />
provision?<br />
• Do I know the <strong>in</strong>formation�<br />
campaign<strong>in</strong>g and social<br />
organisations <strong>in</strong> my area?<br />
user <strong>in</strong>volvement/news<br />
news extra...news extra...news extra..<br />
More palliative<br />
care needed<br />
Palliative care is woefully <strong>in</strong>adequate accord<strong>in</strong>g to neurologist Dr Kathleen Foley<br />
who says, “We need more palliative care than we can imag<strong>in</strong>e”.<br />
Address<strong>in</strong>g the European Association for Palliative Care Congress at The Hague, Dr<br />
Foley called for recognition that palliative care not only reduces suffer<strong>in</strong>g but<br />
forges the k<strong>in</strong>d of relationships between health workers and families that serve as<br />
a framework for deliver<strong>in</strong>g effective preventative healthcare <strong>in</strong>formation. She also<br />
reported on a study which showed that 46 per cent of patients who had requested<br />
physician-assisted suicide changed their m<strong>in</strong>ds when they received substantive<br />
palliative and pa<strong>in</strong> <strong>in</strong>terventions, compared to 15 per cent for whom no<br />
substantive <strong>in</strong>terventions were made.<br />
Other presentations suggested that educat<strong>in</strong>g patients about their pa<strong>in</strong> can halve<br />
the pa<strong>in</strong> felt, and that people - <strong>in</strong> this case consultants - can benefit from tra<strong>in</strong><strong>in</strong>g<br />
<strong>in</strong> break<strong>in</strong>g bad news.<br />
Palliative care is the active, total care of patients at a time when their disease is no<br />
longer responsive to curative treatment and when control of pa<strong>in</strong>, of other<br />
symptoms and of social, psychological and spiritual problems is paramount.<br />
www.eapcnet.org<br />
GPs need more<br />
<strong>in</strong>formation<br />
While the number of patients with autism on a GP’s list is <strong>in</strong>creas<strong>in</strong>g, provision of<br />
effective assessment and referral is not guaranteed.<br />
A survey of GPs by the National Autistic Society found that many GPs feel they lack<br />
the skills and expertise to recognise the possible <strong>in</strong>dicators of autism. As a GP with<br />
an average list size of 2000 could expect to have 18 patients with autism, and a GP<br />
is usually the first po<strong>in</strong>t of contact for a concerned parent, the f<strong>in</strong>d<strong>in</strong>gs suggest<br />
that many children and adults with autism are be<strong>in</strong>g denied access to crucial<br />
<strong>in</strong>terventions which are dependent on a diagnosis.<br />
The survey sampled approximately 1.2 per cent of all GP partners <strong>in</strong> the UK. Four<br />
<strong>in</strong> ten GPs said they did not have sufficient <strong>in</strong>formation to make an <strong>in</strong>formed<br />
assessment about the likelihood of a patient hav<strong>in</strong>g an autism spectrum disorder,<br />
four <strong>in</strong> ten were not aware of sources of local support and <strong>in</strong>formation, and a<br />
third felt that the diagnostic process was likely to take over a year to complete.<br />
The National Autistic Society would like to see government-sponsored guidance<br />
for GPs and other primary care professionals and autism awareness tra<strong>in</strong><strong>in</strong>g<br />
<strong>in</strong>tegrated <strong>in</strong>to the curriculum for student doctors.<br />
www.nas.org.uk<br />
Fund<strong>in</strong>g for aids<br />
The Communication Aids Project has been promised extended fund<strong>in</strong>g to take it<br />
through to 2006.<br />
The project allows school aged pupils <strong>in</strong> England with significant communication<br />
difficulties to get fund<strong>in</strong>g for assessment, equipment and tra<strong>in</strong><strong>in</strong>g related to<br />
communication technology. Managed by the British Educational Communications<br />
and Technology Agency and funded through the Department for Education and<br />
Skills, referrals are considered where there is evidence of a strategy for ongo<strong>in</strong>g<br />
support for the pupil. The most extensively supplied equipment is voice output<br />
devices followed by laptop computers.<br />
The British Educational Communications and Technology Agency has welcomed<br />
the extension to the project. A spokesman said, “Over the next three years we will<br />
be work<strong>in</strong>g with our Communication Aid Project centres to build up the network<br />
of professionals. We will ensure that the use of technology by those with<br />
communication difficulties is seen as <strong>in</strong>tegral to rais<strong>in</strong>g the standards of teach<strong>in</strong>g<br />
and learn<strong>in</strong>g <strong>in</strong> school. In this second phase of the project, we will <strong>in</strong>crease<br />
tra<strong>in</strong><strong>in</strong>g opportunities, provide advice on new technologies and embed an<br />
approach to assessment and provision which will long outlast the Communication<br />
Aids Project.”<br />
www.becta.org.uk/cap<br />
SPEECH & LANGUAGE THERAPY IN PRACTICE SUMMER 2003 �
management<br />
I know what people<br />
need from my service -<br />
Medway speech and<br />
language therapists<br />
have been seek<strong>in</strong>g<br />
users’ views for over 10<br />
years and, more<br />
importantly, chang<strong>in</strong>g<br />
services as a result.<br />
From cr<strong>in</strong>ge to credit,<br />
Val Levens shares the<br />
wealth of experience<br />
they have amassed.<br />
Read this<br />
if you want to<br />
• develop confidence <strong>in</strong> work<strong>in</strong>g<br />
with users<br />
• encourage reflection on<br />
therapy by those <strong>in</strong>volved <strong>in</strong> it<br />
• harness the energy and ideas<br />
of adm<strong>in</strong>istrators and<br />
compla<strong>in</strong>ants<br />
�<br />
I<br />
SPEECH & LANGUAGE THERAPY IN PRACTICE SUMMER 2003<br />
first remember be<strong>in</strong>g asked to th<strong>in</strong>k about<br />
users’ views <strong>in</strong> the late 80’s, when I was told<br />
to produce a questionnaire, evaluate it, and<br />
write a report about it. Thankfully, I can’t<br />
remember many details of the paperwork I<br />
<strong>in</strong>flicted on the carers I worked with. If I<br />
could remember more, I am sure I would recall a<br />
number of embarrass<strong>in</strong>g errors.<br />
It would have been from my perspective. I knew<br />
what people needed from my service, didn’t I? It<br />
was paper based and therefore not easy to use for<br />
people who are not confident readers and writers.<br />
I am pretty sure I didn’t feed back to those<br />
who were k<strong>in</strong>d enough to respond - just to my<br />
boss. Even worse, I cannot remember mak<strong>in</strong>g any<br />
changes to my practice afterwards.<br />
Luckily, I was given a second chance<br />
when I moved <strong>in</strong>to management<br />
myself. A colleague was tak<strong>in</strong>g her<br />
masters <strong>in</strong> Health Psychology and she<br />
suggested we start to ask parents of<br />
children us<strong>in</strong>g community cl<strong>in</strong>ics what<br />
they wanted. We were deal<strong>in</strong>g with<br />
huge wait<strong>in</strong>g lists and at the start of<br />
GP fundhold<strong>in</strong>g. It didn’t feel right to<br />
leave users out of the equation. (Can<br />
anyone else recall those discussions<br />
about who our ‘customers’ were and<br />
the l<strong>in</strong>guistic gymnastics that took<br />
place to put GPs and commissioners above users?)<br />
So, <strong>in</strong> 1994, Julia Ritchie and I ran our first focus<br />
group. We <strong>in</strong>vited 60 randomly selected past and<br />
present users of a cl<strong>in</strong>ic <strong>in</strong> Chatham to an afternoon<br />
meet<strong>in</strong>g. Ten people came, and others rang or<br />
wrote with their views. I saw my first example of a<br />
phenomenon s<strong>in</strong>ce seen many times - people who<br />
have had cause to compla<strong>in</strong> to our service be<strong>in</strong>g the<br />
most giv<strong>in</strong>g and energetic <strong>in</strong> shar<strong>in</strong>g their ideas.<br />
High on excitement<br />
We prepared for the meet<strong>in</strong>g by agree<strong>in</strong>g that we<br />
pr<strong>in</strong>cipally wanted to know users’ views on wait<strong>in</strong>g<br />
times. Should children be seen quickly and learn<br />
if there is a problem, but then wait for <strong>in</strong>put? Or,<br />
was it better to wait longer but get <strong>in</strong>tervention<br />
straight after assessment? Families were clear that<br />
they wanted to be seen as soon as possible and to<br />
use ‘wait<strong>in</strong>g for therapy’ time to put therapy suggestions<br />
<strong>in</strong>to practice. In discussion, it was felt that<br />
eight weeks was a reasonable maximum <strong>in</strong>itial<br />
wait, and Julia Ritchie and I used this <strong>in</strong> negotiations<br />
with commissioners. It was not always a<br />
comfortable meet<strong>in</strong>g, but it was lively and we left<br />
it rather high on the excitement.<br />
Shift<strong>in</strong>g our cl<strong>in</strong>ic work so that children did not<br />
wait longer than eight weeks for <strong>in</strong>itial assessment<br />
was the first move <strong>in</strong> harmonis<strong>in</strong>g a range<br />
of various caseload management practices across<br />
our district and was therefore an extra benefit of<br />
our first users’ views activity.<br />
At this early po<strong>in</strong>t <strong>in</strong> our users’ views evolution, we<br />
decided it was important users did not meet with<br />
‘their’ therapists. We thought that might <strong>in</strong>hibit<br />
honesty, and be difficult for the therapist. On a positive<br />
note, we did feed back to those who attended,<br />
our team, fundholders and commissioners.<br />
In the next two years we cont<strong>in</strong>ued with focus<br />
groups, plann<strong>in</strong>g to ensure we covered all geographical<br />
areas of our Trust and adult users as<br />
well as carers of child users. The senior manage-<br />
ment team shared out the work<br />
so, for example, a paediatric<br />
team leader would run a group<br />
for people who had had a stroke.<br />
We cont<strong>in</strong>ued to report back and<br />
started to work out what<br />
changes we could make.<br />
In 1996 Julia Ritchie and I wrote a<br />
document for our Trust called<br />
‘Inform<strong>in</strong>g and Listen<strong>in</strong>g’. This<br />
looked at the literature around<br />
users’ views and current practices.<br />
We read and visited, and became<br />
even more conv<strong>in</strong>ced that this was<br />
a valuable addition to our work. We became less<br />
anxious about the meet<strong>in</strong>gs, and better at encourag<strong>in</strong>g<br />
people to tell us their story. We learned that<br />
people could hold pa<strong>in</strong>ful memories of diagnosis<br />
and the realisation of the extent of difficulties<br />
described by us. These were often not anyone’s<br />
‘fault’ - they just were.<br />
Other times, small changes could make a big difference.<br />
For example, feedback from therapists to<br />
parents about group therapy performance is hard<br />
to take if it is felt to be always negative about<br />
behaviour and is delivered <strong>in</strong> a busy wait<strong>in</strong>g room.<br />
Similarly, it was great that children with disabilities<br />
could come to therapy at a local cl<strong>in</strong>ic <strong>in</strong>stead of<br />
only at the Child Development Centre - but not if<br />
the therapist forgets that your child can’t walk<br />
<strong>in</strong>to the room alone and she is left <strong>in</strong> the wait<strong>in</strong>g<br />
room without help. In both of these <strong>in</strong>stances, parents<br />
had concealed their hurt at the time and had<br />
only shared it when asked about their experiences<br />
<strong>in</strong> what felt like a safe sett<strong>in</strong>g for them.<br />
I saw my first<br />
example of a<br />
phenomenon s<strong>in</strong>ce<br />
seen many times -<br />
people who have<br />
had cause to<br />
compla<strong>in</strong> to our<br />
service be<strong>in</strong>g the<br />
most giv<strong>in</strong>g and<br />
energetic <strong>in</strong><br />
shar<strong>in</strong>g their ideas.<br />
Benefit of h<strong>in</strong>dsight<br />
After three years of our roll<strong>in</strong>g programme of<br />
focus groups, we took stock of what we were<br />
do<strong>in</strong>g. On the plus side we had ma<strong>in</strong>ta<strong>in</strong>ed activity
don’t I?<br />
and grown our skills and confidence. However,<br />
the importance we had placed on users not meet<strong>in</strong>g<br />
with ‘their’ therapist had had paternalistic<br />
effects we were not happy with. We had kept the<br />
work with<strong>in</strong> the senior management team and so<br />
prevented others develop<strong>in</strong>g the skills we were so<br />
proud of. We had missed an opportunity to<br />
encourage reflection on the therapy experience<br />
between those actually <strong>in</strong>volved <strong>in</strong> it. With the<br />
benefit of h<strong>in</strong>dsight this is so obvious!<br />
How could we open up this work throughout<br />
the department? Also, hav<strong>in</strong>g decided that face<br />
to face was a better format than paper based<br />
methods, were we rely<strong>in</strong>g on it too exclusively?<br />
We came up with the idea of a Users’ Views group,<br />
which would <strong>in</strong>volve a representative from each<br />
therapy team <strong>in</strong> our department (adults, paediatrics<br />
and special needs). This group had a coord<strong>in</strong>ator<br />
and met regularly throughout the year. The team<br />
representative model encouraged whole team discussion<br />
about areas we could explore and was the<br />
prompt we needed to widen our range of action.<br />
Hav<strong>in</strong>g successfully won a Charter Mark award<br />
for our department, we learned from that process<br />
too. We were not especially good at report<strong>in</strong>g on<br />
some of the positive th<strong>in</strong>gs we did - so we started<br />
to produce an annual Users’ Views report. This<br />
enabled us to share our learn<strong>in</strong>g with others <strong>in</strong><br />
our Trust, and allowed us to f<strong>in</strong>d out more about<br />
each other’s projects.<br />
Th<strong>in</strong>k<strong>in</strong>g we could make more use of our<br />
monthly department newsletter to keep Users’<br />
Views a live issue, we began produc<strong>in</strong>g a termly<br />
Users’ News attachment that conta<strong>in</strong>ed snippets<br />
of news, thanks to those who were already participat<strong>in</strong>g<br />
and encouragement to everyone to<br />
th<strong>in</strong>k about how they were - or could be -<br />
<strong>in</strong>volved. This may be one of the reasons that the<br />
last few years have seen plenty of volunteer<strong>in</strong>g<br />
behaviour. Look<strong>in</strong>g at our review of work <strong>in</strong> 2002<br />
(figure 1), there are a number of projects that<br />
have been conceived and completed by people <strong>in</strong><br />
our teams without any prompt<strong>in</strong>g. Written up<br />
projects arrive with post-its say<strong>in</strong>g, “I was do<strong>in</strong>g<br />
this anyway and realised halfway through it was a<br />
Users’ Views project”. People on the Users’ Views<br />
group now are not surprised by calls that start - “I<br />
had an idea .......”, or “What about try<strong>in</strong>g....?”<br />
A member of our adm<strong>in</strong>istration team said she<br />
would like to be on the group. She contributed<br />
generously and enthusiastically, especially <strong>in</strong><br />
prompt<strong>in</strong>g discussions about the therapist/therapy<br />
focus of so much of our th<strong>in</strong>k<strong>in</strong>g. For most users,<br />
their first contacts with us are through adm<strong>in</strong>istration<br />
services, either <strong>in</strong> person or by telephone or<br />
letter. How much thought were we putt<strong>in</strong>g <strong>in</strong>to<br />
these? How could we reduce missed appo<strong>in</strong>tments<br />
by manipulat<strong>in</strong>g the tim<strong>in</strong>g of our appo<strong>in</strong>tments<br />
(eight weeks notice or two? - what we actually<br />
found is that, if a client or their carer works, more<br />
notice is helpful but, otherwise, less is best).<br />
One of the strategies we have used is the perception<br />
scorecard. This is a page of 10 boxes, with<br />
one at the top. It can be used <strong>in</strong> a<br />
number of ways; one of the most<br />
useful is to fill <strong>in</strong> the boxes with an<br />
<strong>in</strong>dividual or group, firstly list<strong>in</strong>g 10<br />
th<strong>in</strong>gs they th<strong>in</strong>k are important<br />
about the service. These are then<br />
ranked <strong>in</strong> perceived order of importance.<br />
Next, the group gives marks<br />
for how well they th<strong>in</strong>k we are<br />
manag<strong>in</strong>g that issue. It is even more<br />
<strong>in</strong>terest<strong>in</strong>g if those deliver<strong>in</strong>g the<br />
service do the same, logg<strong>in</strong>g their perspectives.<br />
Process most valuable<br />
Comparison, shar<strong>in</strong>g and explor<strong>in</strong>g perspectives<br />
prompts lively debate. Actions can be agreed on -<br />
which areas to target and how. However, <strong>in</strong> all of<br />
this it is the process that is the most valuable. We<br />
need to ensure we do not rush for outcomes at<br />
the risk of miss<strong>in</strong>g out the gold that is revealed <strong>in</strong><br />
gett<strong>in</strong>g to them.<br />
It is usual for therapy teams to have different priorities<br />
from users. In a way it is both <strong>in</strong>evitable and<br />
We are more<br />
relaxed about<br />
the work now,<br />
and do it more<br />
readily, often<br />
without even<br />
realis<strong>in</strong>g we<br />
have.<br />
management<br />
Figure 1 Projects undertaken <strong>in</strong> 2002<br />
- Contact with carers of adult patients (what did they th<strong>in</strong>k about it?)<br />
- Sensory <strong>in</strong>teraction project (staff feel<strong>in</strong>gs about how we planned and delivered the work)<br />
- Parents’/carers’ views on group therapy (community cl<strong>in</strong>ic)<br />
- Reflections on a drop <strong>in</strong> cl<strong>in</strong>ic (community cl<strong>in</strong>ic)<br />
- Autism group (children’s views of the group)<br />
- Tra<strong>in</strong><strong>in</strong>g feedback (“what I did this week” – parent/carer thoughts on <strong>in</strong>troduction of<br />
symbol feedback <strong>in</strong> a nursery)<br />
- Leav<strong>in</strong>g the unit (children with language disorder th<strong>in</strong>k<strong>in</strong>g about their time with us).<br />
Figure 2 Team views<br />
• “It’s what really matters <strong>in</strong> plann<strong>in</strong>g how we improve th<strong>in</strong>gs.”<br />
• “I enjoy the opportunity to really ask people what they th<strong>in</strong>k.”<br />
• “It seems daunt<strong>in</strong>g at first but soon becomes part of everyday work<strong>in</strong>g.”<br />
• “Th<strong>in</strong>gs that other teams do can be really useful to see, because it can often be adapted to<br />
my work too.”<br />
Figure 3 How to meet people you can use Figure 4 Techniques to gather users’ views<br />
- Talk with people <strong>in</strong> the wait<strong>in</strong>g room. - Open discussion<br />
- Visit a support group, where people - Guided/<strong>in</strong>terview<br />
may feel more confident.<br />
- Structured <strong>in</strong>terview<br />
- Invite a few people for coffee (and - Perception score cards<br />
crèche).<br />
- Draw<strong>in</strong>g how you felt/feel<br />
- Arrange to meet someone who has - Us<strong>in</strong>g composite pictures to express views<br />
compla<strong>in</strong>ed about the service.<br />
- Feedback slips on reports<br />
- Suggestions box<br />
- Telephone feedback<br />
Whatever you do, <strong>in</strong>clude an ‘anyth<strong>in</strong>g else?’ section.<br />
Users’ views: � steps to better practice<br />
�� Get started! (You will learn whatever you do�)<br />
�� Make it people to people contact� (You can try paper systems later�)<br />
�� Listen more than you talk (and listen to the flavour as well as to the content�)<br />
��Value process more than outcomes� (You will learn more <strong>in</strong> the journey than on arrival�)<br />
�� Keep it simple� (Quality not quantity� Ask for a good th<strong>in</strong>g about contact with you� and<br />
for a bad th<strong>in</strong>g� You may be surprised�)<br />
right - we tra<strong>in</strong> to identify and manage communication<br />
problems. We are drilled <strong>in</strong> efficiency and<br />
evidence. That is valuable because no one wants<br />
us to waste money or time. However, we still need<br />
to know what makes contact with us as positive an<br />
experience as it could be and, as the comments <strong>in</strong><br />
figure 2 show, our team really sees the benefit.<br />
We th<strong>in</strong>k we have come a long way - long<br />
enough to cr<strong>in</strong>ge at some of our earlier<br />
attempts at least! We are more<br />
relaxed about the work now, and do it<br />
more readily, often without even realis<strong>in</strong>g<br />
we have. We are not complacent,<br />
though. We are all too aware that<br />
gather<strong>in</strong>g the views of those with<br />
severe communication problems is a<br />
challenge. We want to do it <strong>in</strong> ways<br />
that are mean<strong>in</strong>gful to the user and<br />
which, <strong>in</strong> themselves, contribute to the<br />
therapeutic <strong>in</strong>tervention.<br />
Suggestions for br<strong>in</strong>g<strong>in</strong>g users <strong>in</strong> and the different<br />
techniques for gather<strong>in</strong>g their views are <strong>in</strong> figures<br />
3 and 4. We will cont<strong>in</strong>ue our roll<strong>in</strong>g programme,<br />
always look<strong>in</strong>g for new / better / different<br />
ideas. If you have some you would like to<br />
share, call us - we would like to hear from you.<br />
Val Levens is a speech and language therapy manager<br />
for Medway Primary Care Trust, tel. 01634 813738. She<br />
thanks Julia Ritchie for her <strong>in</strong>spiration, and writes this<br />
on behalf of Terri Horton, Vicky Kiely, Siobhan Letford,<br />
Susan Tyrrell, Louisa Waters and Janice O’Regan.<br />
SPEECH & LANGUAGE THERAPY IN PRACTICE SUMMER 2003 �
news/resources<br />
..news extra...<br />
M<strong>in</strong>ority ethnic<br />
achievement<br />
The government has been consult<strong>in</strong>g<br />
on rais<strong>in</strong>g the achievement of<br />
m<strong>in</strong>ority ethnic pupils <strong>in</strong> England<br />
and Wales.<br />
Key parts of the proposed strategy<br />
<strong>in</strong>clude improv<strong>in</strong>g the tra<strong>in</strong><strong>in</strong>g of<br />
school leaders, teachers and staff,<br />
putt<strong>in</strong>g a national framework <strong>in</strong><br />
place to support bil<strong>in</strong>gual pupils,<br />
and meet<strong>in</strong>g the needs of highly<br />
mobile pupils. The Department<br />
for Education and Skills will<br />
respond to the consultation<br />
process ‘Aim<strong>in</strong>g High: Rais<strong>in</strong>g the<br />
Achievement of M<strong>in</strong>ority Ethnic<br />
Pupils’ by sett<strong>in</strong>g out its full<br />
implementation plans <strong>in</strong> the<br />
Autumn.<br />
The consultation document can<br />
be downloaded <strong>in</strong> full from<br />
w w w . b a s i c - s k i l l s -<br />
observatory.co.uk.<br />
Volunteers wanted<br />
An organisation that runs voluntary<br />
health placements <strong>in</strong> Ecuador,<br />
Ghana, Honduras and India is<br />
encourag<strong>in</strong>g speech and language<br />
therapists to consider<br />
offer<strong>in</strong>g their skills to communities<br />
less fortunate than our own.<br />
Placements with i-to-i are commensurate<br />
to experience, and the<br />
organisation also offers tra<strong>in</strong><strong>in</strong>g<br />
<strong>in</strong> Teach<strong>in</strong>g English as a Foreign<br />
<strong>Lang</strong>uage.<br />
www.i-to-i.com<br />
Helpl<strong>in</strong>e for families<br />
The national freephone helpl<strong>in</strong>e<br />
for families of disabled children<br />
has been secured for the next<br />
three years with government<br />
fund<strong>in</strong>g.<br />
The Contact a Family charity’s<br />
helpl<strong>in</strong>e is now receiv<strong>in</strong>g 1500<br />
calls a month. Chief executive<br />
Franc<strong>in</strong>e Bates said, “We always<br />
knew there was a demand for<br />
<strong>in</strong>formation but its [the helpl<strong>in</strong>e’s]<br />
success just proves how vital it is<br />
for so many parents throughout<br />
the UK.”<br />
The charity has also published the<br />
latest edition of its Directory of<br />
Specific Conditions, Rare<br />
Disorders and UK Family Support<br />
Groups available as a bound volume<br />
(£35), CD ROM (£75 + VAT)<br />
and onl<strong>in</strong>e.<br />
Helpl<strong>in</strong>e 0800 808 3555, Contact a<br />
Family, tel. 020 7608 8700,<br />
www.cafamily.org.uk.<br />
��<br />
SPEECH & LANGUAGE THERAPY IN PRACTICE SUMMER 2003<br />
..resources...resources..<br />
Are we listen<strong>in</strong>g?<br />
A resource pack for those <strong>in</strong>terested <strong>in</strong> listen<strong>in</strong>g to<br />
and consult<strong>in</strong>g with children who have communication<br />
support needs has been published follow<strong>in</strong>g an<br />
18 month project by Sense Scotland <strong>in</strong> association<br />
with the CALL Centre. It consists of two books, Are<br />
we listen<strong>in</strong>g? and A rough guide to listen<strong>in</strong>g.<br />
Listen<strong>in</strong>g to children with communication support<br />
needs is £27 <strong>in</strong>c. p+p (£30 outwith UK) from the<br />
CALL Centre, tel. 0131 651 6236,<br />
www.callcentrescotland.org.uk.<br />
Park<strong>in</strong>son’s<br />
The Park<strong>in</strong>son’s Disease Society’s new website has<br />
been designed with help from people with the<br />
condition.<br />
www.park<strong>in</strong>sons.org.uk<br />
Book news<br />
Bil<strong>in</strong>gual children’s books, CDs and friezes are<br />
available on www.mantral<strong>in</strong>gua.com. The<br />
languages covered are Albanian, Arabic, Bengali,<br />
Ch<strong>in</strong>ese, Punjabi, Somali, Turkish and Urdu.<br />
Mantra L<strong>in</strong>gua has translated the Bookstart<br />
guidance tips on book shar<strong>in</strong>g for Czech, Farsi,<br />
Polish, Portuguese, Russian, Serbian, Shona, Tamil<br />
and Vietnamese parents. They are available <strong>in</strong> pdf<br />
format at www.bookstart.co.uk/parents.<br />
Information on children’s books and resources for<br />
professionals work<strong>in</strong>g with young readers are at<br />
www.booktrusted.com.<br />
In-air cursor control<br />
Teach<strong>in</strong>g and lectur<strong>in</strong>g options cont<strong>in</strong>ue to<br />
expand, the latest tool be<strong>in</strong>g <strong>in</strong>-air cursor control<br />
which <strong>in</strong> effect allows you to control a PowerPo<strong>in</strong>t<br />
presentation from anywhere <strong>in</strong> the room us<strong>in</strong>g<br />
simple hand gestures.<br />
For suppliers of the Ultra Professional Optical<br />
keyboard and mouse Suite with a 100’ range, see<br />
www.gyration.co.uk.<br />
Stroke <strong>in</strong>formation<br />
A quarter of all strokes <strong>in</strong> England and Wales are<br />
directly caused by smok<strong>in</strong>g. The Stroke Association<br />
has produced a free patient <strong>in</strong>formation factsheet on<br />
Smok<strong>in</strong>g and Stroke that offers advice on quitt<strong>in</strong>g.<br />
Also available from the Association is a factsheet on<br />
Depression after Smoke, as it is estimated that up to<br />
half of those who survive a stroke will experience<br />
depression at some stage <strong>in</strong> the first few years.<br />
Tel. 01604 623 933/4.<br />
Free downloads<br />
Crick Software has a new-look website where you<br />
can download free resources for Clicker, Wordbar<br />
and ClozePro.<br />
www.Learn<strong>in</strong>gGrids.com<br />
Lifelong learn<strong>in</strong>g<br />
A company is position<strong>in</strong>g its cont<strong>in</strong>u<strong>in</strong>g<br />
professional development management tra<strong>in</strong><strong>in</strong>g<br />
as a low-cost, flexible option for <strong>in</strong>dividuals or<br />
organisations.<br />
www.turnkeylearn<strong>in</strong>g.com<br />
Girls and Fragile X<br />
The Fragile X Society has produced a conference<br />
report on two talks:<br />
Girls with Fragile X: The Big Picture (educational<br />
needs and social development of girls aged 3 to<br />
18 that will promote a productive lifestyle,<br />
encourage social <strong>in</strong>teraction and lessen anxiety) by<br />
Dr Lesley Powell, and L<strong>in</strong>k<strong>in</strong>g Bra<strong>in</strong> and Behaviour<br />
<strong>in</strong> young women with fragile X syndrome by Dr<br />
Kim Cornish and Dr Georg<strong>in</strong>a Jackson.<br />
www.fragilex.org.uk<br />
Anyth<strong>in</strong>g is possible<br />
The British Stammer<strong>in</strong>g Association has<br />
published a new booklet for teenagers who<br />
stammer, with Gareth Gates and the caption<br />
‘Anyth<strong>in</strong>g is Possible’ on the front. It <strong>in</strong>cludes<br />
centres, courses and websites.<br />
A Message for Teenagers Who Stammer is free for<br />
s<strong>in</strong>gle copies, or 50p each <strong>in</strong>c. p&p (ten copies for<br />
£4). Tel. 020 8983 1003, www.stammer<strong>in</strong>g.org.<br />
Dementia tra<strong>in</strong><strong>in</strong>g<br />
A flexible toolkit aimed at anyone provid<strong>in</strong>g<br />
dementia care tra<strong>in</strong><strong>in</strong>g <strong>in</strong>cludes 60 icebreakers<br />
and exercises that address key dementia topics,<br />
sessions plans, notes, diagrams and evaluation<br />
questions.<br />
Mak<strong>in</strong>g a difference <strong>in</strong> dementia care tra<strong>in</strong><strong>in</strong>g is<br />
£70 + p&p from the Alzheimer’s Society <strong>in</strong><br />
association with Dementia Care Matters,<br />
tel. 01736 33 33 33.<br />
Management<br />
A new book with CD ROM, which <strong>in</strong>cludes case<br />
studies and analysis of future trends, suggests<br />
how voluntary organisations can be run more<br />
effectively.<br />
How to Manage a Voluntary Organisation by<br />
Robert Perr<strong>in</strong> is £25, see www.kogan-page.co.uk.<br />
New from Black Sheep Press<br />
The second edition of Speak<strong>in</strong>g & Listen<strong>in</strong>g<br />
Through Narrative, a pack to teach the concept of<br />
‘category’, a game to teach the concept of ‘number’,<br />
Talk<strong>in</strong>About Secondary School to help pupils<br />
discuss the transition to a new school, and a pack<br />
of Visual Cue Cards are new resources <strong>in</strong> the<br />
<strong>Summer</strong> 2003 catalogue from Black Sheep Press.<br />
www.blacksheep-epress.com, tel. 01535 631346
REVIEWS<br />
SOCIAL SKILLS<br />
A STIMULATING CHALLENGE<br />
Skills for Daily Liv<strong>in</strong>g: Social<br />
Behaviour<br />
<strong>Speech</strong>mark ColorCards<br />
ISBN 0 86388 422 9 £26.95<br />
This set of cards uses detailed l<strong>in</strong>e draw<strong>in</strong>gs to portray<br />
a wide range of social situations and, usefully, <strong>in</strong>cludes<br />
examples of both <strong>in</strong>appropriate and correct social<br />
behaviour. Often students are required to read quite<br />
subtle <strong>in</strong>dicators such as facial expression and body<br />
posture <strong>in</strong> order to understand the events illustrated<br />
and so, while younger children can access the material<br />
with adult guidance, the cards still present a<br />
stimulat<strong>in</strong>g challenge for older children (year 8 and<br />
above).<br />
An accompany<strong>in</strong>g booklet provides a brief summary of<br />
each situation and, while it provides some ideas on<br />
effective use of the cards, the therapist is required to<br />
use some creativity to get the most from them.<br />
Activities such as role-play and comic strips provide the<br />
opportunity to base a whole session around each of<br />
the 44 cards, potentially mak<strong>in</strong>g this pack very good<br />
value for money.<br />
Ruth Watson is a speech and language therapist<br />
work<strong>in</strong>g at Laleham School <strong>in</strong> Margate for children<br />
with speech, language and specific learn<strong>in</strong>g<br />
difficulties.<br />
LEARNING DISABILITY<br />
SPRINGBOARD NOT<br />
OVERLOAD<br />
Management of Communication<br />
Needs <strong>in</strong> People with Learn<strong>in</strong>g<br />
Disability<br />
Samuel Abudarham & Angela Hurd (Eds)<br />
Whurr<br />
ISBN 1 86156 208 X £25.00<br />
The editors have strived for a balance between the<br />
theory and practical aspects of work<strong>in</strong>g with this client<br />
group. The usefulness of this book lies <strong>in</strong> the fact that<br />
it provides a spr<strong>in</strong>gboard <strong>in</strong>to the spectrum of learn<strong>in</strong>g<br />
disabilities without overload<strong>in</strong>g the reader. Instead,<br />
the scope of therapy techniques, service approaches,<br />
and theoretical issues are addressed concisely, leav<strong>in</strong>g<br />
you <strong>in</strong>formed and with up-to-date references for more<br />
detailed read<strong>in</strong>g. Useful case examples are also<br />
provided to illustrate therapy <strong>in</strong> action. For the<br />
student, this is a worthy resource for gett<strong>in</strong>g to grips<br />
with the spectrum of issues connected with the<br />
learn<strong>in</strong>g disabilities population. For the newly<br />
qualified therapist, it presents a concise l<strong>in</strong>k between<br />
theory and practice that serves as a useful <strong>in</strong>troduction<br />
to work<strong>in</strong>g <strong>in</strong> this area.<br />
Amy Hobson is a newly qualified speech and language<br />
therapist (paediatrics and special needs) with City<br />
Hospitals Sunderland NHS Trust.<br />
PERSISTENT PROBLEMS<br />
‘A MUST’<br />
Improv<strong>in</strong>g Children’s<br />
Communication:<br />
Manag<strong>in</strong>g<br />
persistent<br />
communication<br />
difficulties<br />
Poppy Nash, Jackie<br />
Strengelhofen, Jane Brown &<br />
Louise Toombs<br />
Whurr<br />
ISBN 1 86156 298 5 £35.00<br />
This publication consists of a<br />
manual and photocopiable<br />
worksheets. The manual<br />
describes a short programme of<br />
group therapy (preferably<br />
residential) for able children<br />
with persistent communication<br />
difficulties, and is easy to read,<br />
clear and <strong>in</strong>formative.<br />
The authors aim to teach the<br />
children to take responsibility<br />
for their own communication,<br />
and to use speech and language<br />
appropriate to different listeners<br />
and situations. Self-image,<br />
teas<strong>in</strong>g and bully<strong>in</strong>g, listen<strong>in</strong>g<br />
skills, self-monitor<strong>in</strong>g, and<br />
awareness of speech production,<br />
<strong>in</strong>clud<strong>in</strong>g voice, <strong>in</strong>tonation and<br />
appropriate volume are covered.<br />
The resource materials are<br />
user-friendly and practical.<br />
Ideally, the programme is aimed<br />
at children of average ability,<br />
aged eight years and above,<br />
who are able to reflect on their<br />
feel<strong>in</strong>gs and quality of<br />
communication. They would<br />
have persistent communication<br />
difficulties, affect<strong>in</strong>g their<br />
self-image, motivation and social<br />
<strong>in</strong>teraction, such as cleft palate,<br />
or a stammer. The authors argue<br />
that a wider client group would<br />
also benefit.<br />
Good value - a must for<br />
therapists work<strong>in</strong>g with the<br />
relevant client group.<br />
Ruth Harrower is a speech<br />
and language therapist work<strong>in</strong>g<br />
with primary aged children<br />
with severe speech and<br />
language disorder, autism<br />
spectrum disorder and<br />
complex needs at Meath School<br />
(I CAN).<br />
reviews<br />
HEAD INJURY<br />
DIFFICULT IN PRACTICE<br />
Head Injury Education -<br />
A Group <strong>Therapy</strong> Manual<br />
Mart<strong>in</strong> van den Broek & Beverley Dayus<br />
<strong>Speech</strong>mark<br />
ISBN 0 86388 229 3 £24.95<br />
This manual is an additional resource for an<br />
experienced therapist of any discipl<strong>in</strong>e already<br />
runn<strong>in</strong>g rehabilitation programmes for patients<br />
with high level cognitive communication<br />
difficulties follow<strong>in</strong>g traumatic bra<strong>in</strong> <strong>in</strong>jury. It isn’t<br />
relevant to everyday work <strong>in</strong> the cl<strong>in</strong>ic but rather<br />
to therapists (‘tra<strong>in</strong>ers’) who have very high<br />
numbers of these patients (‘tra<strong>in</strong>ees’). The manual<br />
<strong>in</strong>cludes a review of theory, guidel<strong>in</strong>es on runn<strong>in</strong>g<br />
groups, outl<strong>in</strong>es of 12 therapy sessions and<br />
photocopiable materials.<br />
The authors suggest that about eight tra<strong>in</strong>ees<br />
need to commit to the 12 sessions to make the<br />
group work but this would be difficult <strong>in</strong> practice.<br />
Additionally, it would be time-consum<strong>in</strong>g to adapt<br />
the material for tra<strong>in</strong>ees with other conditions<br />
such as stroke. (In fact the presentation and level<br />
at which the material is pitched makes it<br />
appropriate for tra<strong>in</strong><strong>in</strong>g other speech and<br />
language therapists and multidiscipl<strong>in</strong>ary team<br />
members <strong>in</strong> high level communication skills!)<br />
Mahalia Millett and Gunilla de Robeck are speech<br />
and language therapists at Addenbrooke’s<br />
Hospital, Cambridge.<br />
Letter to the editor<br />
Dear Avril,<br />
Can any of your readers help me with their views, ideas<br />
and experiences? My job for the next eighteen months<br />
is to contribute to the development and implementation<br />
of an <strong>in</strong>tegrated team approach to therapy services for<br />
children with neuro-developmental delay and their families<br />
<strong>in</strong> the Liv<strong>in</strong>gston area. Initially I will be look<strong>in</strong>g at:<br />
• explor<strong>in</strong>g the use of therapy jo<strong>in</strong>t assessment and<br />
documentation and potentially its l<strong>in</strong>k to the s<strong>in</strong>gle<br />
shared assessment process<br />
• paediatric therapy assessment tools and outcome<br />
measures<br />
• collaborat<strong>in</strong>g with staff, carers and families to get<br />
their views on the services provided<br />
• explor<strong>in</strong>g and implement<strong>in</strong>g multidiscipl<strong>in</strong>ary models<br />
of care.<br />
I hope to write up this work for the magaz<strong>in</strong>e <strong>in</strong> due<br />
course.<br />
Thanks,<br />
Gail Nash<br />
Physiotherapist, Integrated Therapies Project<br />
Tel. 01506 777598 / 777580, e-mail<br />
gail.nash@wlt.scot.nhs.uk<br />
17 March, 2003<br />
SPEECH & LANGUAGE THERAPY IN PRACTICE SUMMER 2003 ��
A<br />
��<br />
conference report<br />
Avril Nicoll<br />
attends the<br />
7th I CAN<br />
national<br />
conference.<br />
clear message from the 7th I CAN conference<br />
is that collaboration has to start<br />
somewhere - and talk<strong>in</strong>g to each other<br />
does help. With his usual perception,<br />
James Law suggests that people who describe<br />
themselves as ‘work<strong>in</strong>g towards’ collaboration<br />
probably don’t talk at all. Ruth Paradice believes<br />
that hav<strong>in</strong>g a coffee together would be a start for<br />
some. One delegate welcomes the spread of email,<br />
as she f<strong>in</strong>ds it <strong>in</strong>valuable for mak<strong>in</strong>g <strong>in</strong>itial<br />
contact with colleagues <strong>in</strong> other professions, and<br />
mak<strong>in</strong>g it easier to set up face-to-face meet<strong>in</strong>gs.<br />
Contact is, however, of limited value if you can’t<br />
understand each other. Mary Auckland f<strong>in</strong>ds that<br />
teachers’ knowledge of language development is<br />
poor, so all the other skills they have cannot be<br />
used until this knowledge gap is addressed. Julie<br />
Dockrell’s research highlights split perspectives,<br />
with speech and language therapists striv<strong>in</strong>g for<br />
an appropriate diagnosis, and local education<br />
authorities look<strong>in</strong>g for a needs based model. She<br />
asks, are they <strong>in</strong> conflict, or can they be complementary?<br />
To make collaboration count, Barbara Clarkson &<br />
Angela Peel say don’t go to people who don’t<br />
want you. Stick with people who are eager, and<br />
your work will grow and the enthusiasm spread.<br />
Mary Auckland agrees. A designated staff member<br />
is vital to the programme of empower<strong>in</strong>g<br />
schools which is underway <strong>in</strong> the Bracknell area,<br />
and she recommends target<strong>in</strong>g projects on the<br />
really keen teachers with<strong>in</strong> the really keen<br />
schools.<br />
A w<strong>in</strong>/w<strong>in</strong> model<br />
What do you do though when, as <strong>in</strong><br />
Herefordshire, there is no history of multi-agency<br />
work<strong>in</strong>g and no service to ma<strong>in</strong>stream schools?<br />
And where, due to curriculum demands, children<br />
have <strong>in</strong>sufficient time to develop their vocabulary<br />
and language? An Education Action Zone has<br />
been set up to provide ‘additionality’, and this<br />
seems to have provided some of the answers. A<br />
survey before the project found 28 per cent of<br />
children at Key Stage 1 had language problems,<br />
SPEECH & LANGUAGE THERAPY IN PRACTICE SUMMER 2003<br />
I CAN make<br />
collaboration<br />
ris<strong>in</strong>g to 35 per cent at Key Stage 2. In contrast,<br />
follow<strong>in</strong>g the <strong>in</strong>troduction of the Education<br />
Action Zone, the figure dropped from 25 per cent<br />
at Reception to 6-8 per cent the follow<strong>in</strong>g year.<br />
The Action Zone educational psychologist Val<br />
Dann and speech and language therapist Judy<br />
W<strong>in</strong>field have brought <strong>in</strong> the Teach<strong>in</strong>g Talk<strong>in</strong>g<br />
package and f<strong>in</strong>d it a ‘w<strong>in</strong>/w<strong>in</strong>’ model. In addition<br />
to the language ga<strong>in</strong>s <strong>in</strong> the population targeted,<br />
teachers are now more confident deal<strong>in</strong>g with<br />
simple delay, have taken on board the ‘repetition,<br />
repetition, repetition’ mantra, and are us<strong>in</strong>g the<br />
‘emerg<strong>in</strong>g’ skill category <strong>in</strong> Teach<strong>in</strong>g Talk<strong>in</strong>g to<br />
target consolidation. The cl<strong>in</strong>ic-based speech and<br />
language therapy department is receiv<strong>in</strong>g better<br />
quality referrals and there is now support for the<br />
recommendations made by their speech and language<br />
therapists, as teachers and therapists have<br />
a common language which<br />
facilitates discussion.<br />
Julie Dockrell argues that<br />
an oral language curriculum<br />
and written policies<br />
would be positive steps,<br />
and that built-<strong>in</strong> collaboration<br />
is a glar<strong>in</strong>g omission<br />
from local education<br />
authority plans for children<br />
with speech, language<br />
and communication<br />
difficulties. Along with<br />
other speakers she asks<br />
that we attempt to agree<br />
on term<strong>in</strong>ology for<br />
describ<strong>in</strong>g these children<br />
(she counted 17 different<br />
descriptors <strong>in</strong> the course of<br />
her research), and that the<br />
Initially parents<br />
were kept at a<br />
safe distance.<br />
Now parents are<br />
attend<strong>in</strong>g<br />
tra<strong>in</strong><strong>in</strong>g activities<br />
and jo<strong>in</strong><strong>in</strong>g <strong>in</strong><br />
with discussions -<br />
true partnership<br />
<strong>in</strong> action.<br />
needs of children with autism are addressed as<br />
well as, not <strong>in</strong>stead of, children with more specific<br />
speech and language difficulties.<br />
In argu<strong>in</strong>g for greater collaborative practice to<br />
benefit children, Gill Edelman commented that,<br />
“professionalism is a very exclusive bus<strong>in</strong>ess”. At<br />
times the bus<strong>in</strong>ess was so exclusive at this conference<br />
that parents rated barely a mention, perhaps<br />
reflect<strong>in</strong>g the prevalent attitude <strong>in</strong> our education<br />
system compared with cl<strong>in</strong>ic-based therapy. Julie<br />
Dockrell notes that local education authority<br />
plans for children with speech, language and<br />
communication difficulties do not discuss the role<br />
of parents. James Law po<strong>in</strong>ts out that parents<br />
who are engaged early with a system are much<br />
more likely to understand the logic of different<br />
models of service delivery, and that parents are<br />
one of our best measures of whether health and<br />
education work well together. Denise Ford, however,<br />
has really run with this. Although work<strong>in</strong>g<br />
with parent groups had always been part of the<br />
Kent plan, <strong>in</strong>itially parents were kept at what she<br />
describes as a safe distance. Now that everyone<br />
has moved on <strong>in</strong> their th<strong>in</strong>k<strong>in</strong>g, parents are<br />
attend<strong>in</strong>g tra<strong>in</strong><strong>in</strong>g activities and jo<strong>in</strong><strong>in</strong>g <strong>in</strong> with<br />
discussions - true partnership <strong>in</strong> action.<br />
The government says its reform of secondary education<br />
<strong>in</strong> England will enable a shift from the old<br />
one-size-fits-all system to tailored-made teach<strong>in</strong>g<br />
and learn<strong>in</strong>g for every pupil. Plans <strong>in</strong>clude commitments<br />
to develop partnerships beyond the<br />
classroom with parents, bus<strong>in</strong>ess, universities and<br />
others, and to reform the school workforce by<br />
allow<strong>in</strong>g teachers time to teach and a far greater<br />
role for more tra<strong>in</strong>ed adults <strong>in</strong> the classroom. It<br />
seems this can’t come a moment too<br />
soon as the woeful <strong>in</strong>adequacy of<br />
speech and language therapy at secondary<br />
level was a repeated theme<br />
of the day. Mary Auckland’s work is<br />
at the primary stage - and she<br />
believes a completely different<br />
approach is needed for the secondary<br />
level. Julie Dockrell wants to see<br />
strategic development for Key Stage<br />
3-4 and post 16s, where speech and<br />
language therapy provision is particularly<br />
poor.<br />
Barbara Clarkson and Angela Peel<br />
are one of the few speech and language<br />
therapist / teacher teams<br />
work<strong>in</strong>g with pupils <strong>in</strong> a ma<strong>in</strong>stream<br />
secondary. The school has a speech<br />
and language resource, ma<strong>in</strong>ly for<br />
children who have been <strong>in</strong> a primary<br />
language unit. Like Mary Auckland, they emphasise<br />
that teach<strong>in</strong>g metacognitive skills supports<br />
both <strong>in</strong>clusion and collaboration. They identified<br />
the actions which commonly make up ‘learn<strong>in</strong>g<br />
support’ - help, tell, read, write, check, ask,<br />
stop...<strong>in</strong> effect, th<strong>in</strong>k for - and which serve to isolate<br />
pupils from their peers and classroom teachers.<br />
By <strong>in</strong>troduc<strong>in</strong>g four types of lesson cover<strong>in</strong>g<br />
skills <strong>in</strong> learn<strong>in</strong>g and <strong>in</strong>dependence, and social<br />
skills and problem solv<strong>in</strong>g, and add<strong>in</strong>g classroom<br />
observation and modification of teach<strong>in</strong>g, pupils<br />
are actively th<strong>in</strong>k<strong>in</strong>g and problem-solv<strong>in</strong>g <strong>in</strong><br />
whatever context they f<strong>in</strong>d themselves.<br />
Debrief<strong>in</strong>g is an important element - What have<br />
we just been do<strong>in</strong>g? What would have been useful?<br />
Who could help you with this? When are you<br />
go<strong>in</strong>g to plan? What resources could help you?
count<br />
Shared vision<br />
The importance Barbara Clarkson and Angela Peel<br />
attach to a ‘shared vision’ was also taken up by<br />
Denise Ford, who f<strong>in</strong>ds it overcomes the problems<br />
caused by cont<strong>in</strong>ual organisational change. In<br />
addition, it allows for wider experimentation <strong>in</strong><br />
delivery of speech and language therapy, and one<br />
result <strong>in</strong> Kent has been the production of <strong>Speech</strong><br />
L<strong>in</strong>k, a multimedia phonology assessment. Staff<br />
have been so impressed with I CAN’s Jo<strong>in</strong>t<br />
Professional Development Framework that there<br />
are plans to use it as the structure for professional<br />
development pathways with<strong>in</strong> Kent across all the<br />
special educational needs dimensions - physical &<br />
sensory, cognition & learn<strong>in</strong>g, behaviour, emotional<br />
& social, as well as communication & <strong>in</strong>teraction.<br />
The approach to schools across the Kent county is<br />
one of rights and responsibilities - they have the<br />
right to rapid access to services if they take<br />
responsibility for allocat<strong>in</strong>g tra<strong>in</strong><strong>in</strong>g time and<br />
assistants. Tak<strong>in</strong>g an organised, whole service<br />
approach with leadership is also favoured by Mary<br />
Auckland, and results <strong>in</strong> the Bracknell area bear<br />
this out: carryover to classroom practice, schools<br />
now feel they have more to offer all children with<br />
special educational needs, listen<strong>in</strong>g and attention<br />
groups have led to improvements <strong>in</strong> behaviour<br />
and learn<strong>in</strong>g. As well as commitment from schools<br />
for tra<strong>in</strong><strong>in</strong>g, designat<strong>in</strong>g staff and protect<strong>in</strong>g<br />
time, this model also depends on cultural change<br />
amongst speech and language therapists, schools<br />
and parents, and Mary Auckland believes we<br />
sometimes underestimate the shifts <strong>in</strong> th<strong>in</strong>k<strong>in</strong>g<br />
that are required.<br />
James Law supports the need to develop leaders<br />
and for more strategic th<strong>in</strong>k<strong>in</strong>g <strong>in</strong> our profession.<br />
He cautions aga<strong>in</strong>st ‘creep<strong>in</strong>g consultancy’, a<br />
move to a model which has not been properly<br />
5 themes for action<br />
1. get talk<strong>in</strong>g<br />
2. share a vision<br />
3. develop leaders<br />
4. work with parents<br />
5. teach metacognitive skills<br />
thought out, supported or evaluated. He is<br />
unequivocal - a consultant is an expert practitioner<br />
and a newly qualified therapist does not have the<br />
skills and experience to be put <strong>in</strong> this position. As<br />
he says, a choice about a consultative model is not<br />
a b<strong>in</strong>ary one, but is <strong>in</strong>timately l<strong>in</strong>ked with other<br />
choices. Leaders need to work with birthrate and<br />
population figures and notional caseloads, and to<br />
use evidence rather than policy to drive decision<br />
mak<strong>in</strong>g. He notes that the push towards equity of<br />
service is result<strong>in</strong>g <strong>in</strong> more people gett<strong>in</strong>g less, and is<br />
therefore work<strong>in</strong>g aga<strong>in</strong>st evidence based practice.<br />
Denise Ford talked about Kent’s Communication<br />
& Interaction service as be<strong>in</strong>g a ‘virtual service’<br />
and I suspect this is someth<strong>in</strong>g we’re go<strong>in</strong>g to<br />
come across a lot more. A difficult concept to<br />
grasp, it emphasises a highly flexible but well<br />
coord<strong>in</strong>ated structure with a clear vision. Val<br />
Dann po<strong>in</strong>ts out, though, that a ‘virtual team’ can<br />
only work if its members know it exists!<br />
Ruth Paradice called for more strategic developments,<br />
not just grass roots support. Collaboration<br />
that works comb<strong>in</strong>es strategic lead with backup on<br />
the ground - hardly rocket science but, <strong>in</strong> practice,<br />
we know how difficult it can be to achieve, and we<br />
need to be aware of what works so we can do more<br />
of it. Conferences with many short presentations<br />
Hot off the press!<br />
conference report<br />
don’t serve the same purpose as a one or two day<br />
course <strong>in</strong> a particular approach, and delegates need<br />
to appreciate that and adjust their expectations<br />
accord<strong>in</strong>gly. What they do achieve is to br<strong>in</strong>g<br />
together the people who are driv<strong>in</strong>g the change <strong>in</strong><br />
the profession, to enthuse and <strong>in</strong>spire them to f<strong>in</strong>d<br />
out more and to keep go<strong>in</strong>g, even when the go<strong>in</strong>g<br />
gets tough.<br />
If you want to make your collaboration count,<br />
you can audit your cont<strong>in</strong>u<strong>in</strong>g professional development<br />
needs on the I CAN website.<br />
The 7th I CAN conference ‘Collaboration Counts’<br />
was on Monday 3rd March 2003 at the<br />
Commonwealth Centre <strong>in</strong> London. There were six<br />
ma<strong>in</strong> speakers and three workshop sessions where<br />
delegates could choose to attend one workshop<br />
out of five offered. Power Po<strong>in</strong>t presentations of<br />
most sessions are at www.ican.org.uk.<br />
Resources<br />
Teach<strong>in</strong>g Talk<strong>in</strong>g (1985) by Ann Locke and Maggie<br />
Beech is available from NFER-Nelson, see<br />
www.nfer-nelson.co.uk/html/health/products/tt.htm.<br />
Further <strong>in</strong>formation on <strong>Speech</strong> L<strong>in</strong>k from Derry<br />
Patterson, <strong>Speech</strong>l<strong>in</strong>k Co-ord<strong>in</strong>ator, <strong>Speech</strong> and<br />
<strong>Lang</strong>uage <strong>Therapy</strong> Department, Medway Maritime<br />
Hospital, W<strong>in</strong>dmill Road, Gill<strong>in</strong>gham ME7 5NY, e-mail<br />
W<strong>in</strong> Speak<strong>in</strong>g� Listen<strong>in</strong>g and Understand<strong>in</strong>g �<br />
Games for Young Children<br />
Do you need ideas for 5-7 year olds? Written by two speech and language therapists experienced <strong>in</strong> collaborative work<strong>in</strong>g<br />
with ma<strong>in</strong>stream teachers, the graded games and activities <strong>in</strong> this brand new book need m<strong>in</strong>imal<br />
equipment and can be carried out by therapists, teachers, classroom assistants or volunteers.<br />
<strong>Speech</strong>mark Publish<strong>in</strong>g ltd is offer<strong>in</strong>g a FREE copy to THREE lucky <strong>Speech</strong> & <strong>Lang</strong>uage <strong>Therapy</strong> <strong>in</strong> Practice readers<br />
(normal price £32.95).<br />
For your chance to w<strong>in</strong>, send your name and address to <strong>Speech</strong> & <strong>Lang</strong>uage <strong>Therapy</strong> <strong>in</strong> Practice - SLU offer, Su Underhill,<br />
<strong>Speech</strong>mark, Telford Road, Bicester, OX26 4LQ by 25th July. The w<strong>in</strong>ners will be notified by 1st August.<br />
Speak<strong>in</strong>g, Listen<strong>in</strong>g and Understand<strong>in</strong>g - Games for Young Children by Cather<strong>in</strong>e Delama<strong>in</strong> and Jill Spr<strong>in</strong>g is available along with<br />
a free catalogue from <strong>Speech</strong>mark, tel. 01869 244644.<br />
SPEECH & LANGUAGE THERAPY IN PRACTICE SUMMER 2003 ��
��<br />
professional role<br />
Noth<strong>in</strong>g<br />
more<br />
to offer?<br />
SPEECH & LANGUAGE THERAPY IN PRACTICE SUMMER 2003<br />
When a person has a<br />
progressive disorder, what<br />
lies beh<strong>in</strong>d their social<br />
smiles and reassurances?<br />
How do they feel when<br />
solid, reciprocal social<br />
support networks are<br />
shattered by communication<br />
breakdown? Draw<strong>in</strong>g on<br />
quotes from her qualitative<br />
research, Margaret White<br />
argues that the deep<br />
despair and pa<strong>in</strong> she found<br />
tells us much about the<br />
need for support and why<br />
we should be actively<br />
facilitat<strong>in</strong>g and offer<strong>in</strong>g it,<br />
even when traditional‘<br />
therapy’ has ended.<br />
“<br />
If I could still talk properly I’d be more outgo<strong>in</strong>g,<br />
as I was before. I could cope with the<br />
physical problems if I could talk to people.<br />
It’s changed my life completely.”<br />
The progressive loss of both communicative and<br />
physical abilities has implications for all aspects of<br />
a person’s life. At many po<strong>in</strong>ts <strong>in</strong> the progression,<br />
whether it is fast or slow, the onward march of<br />
deterioration <strong>in</strong> communication causes feel<strong>in</strong>gs of<br />
desperation. As part of a Masters course I carried<br />
out a study <strong>in</strong>to the views of people with progressive<br />
disorders and their carers about the loss<br />
of communication, and what I learned personally<br />
was almost more important than what I learned<br />
academically. There emerged a real understand<strong>in</strong>g<br />
of the sufferers’ deep despair and pa<strong>in</strong> at their situation,<br />
concealed by social smiles and reassurances.<br />
Without exception, all felt that they could cope<br />
with the physical loss if speech had been spared.<br />
Most of the people I talked to had been known<br />
to me professionally for some time - some<br />
months, some years - and I watched as their contact<br />
with their world was gradually eroded by the<br />
loss of communication.<br />
“There are only two of us who understand her<br />
reasonably well, and even then we have to<br />
resort to the alphabet chart or the frame, but<br />
they are too slow and she gets very frustrated.”<br />
Communication is about contact. Contact with<br />
groups at work, groups of friends, groups of<br />
acqua<strong>in</strong>tances, groups jo<strong>in</strong>ed together by <strong>in</strong>terests,<br />
groups jo<strong>in</strong>ed together by relationships. People<br />
will use communication aids because it gives them<br />
someth<strong>in</strong>g - but not what they really want.<br />
What they really want is the ability to discuss,<br />
argue, make jokes, sympathise, talk through<br />
problems and emotions. What they want is the<br />
quality of life they had previously. It may not<br />
have seemed a world-shatter<strong>in</strong>g lifestyle, but the<br />
more of it they lose, the more precious it becomes.<br />
What they want is a return of not only functional,<br />
but also social and emotional communication.<br />
“The carers are good with her, but she is unable<br />
to tell them th<strong>in</strong>gs, even simple th<strong>in</strong>gs such as<br />
her leg <strong>in</strong> the wrong position, or her neck hurt<strong>in</strong>g,<br />
and they don’t have the time to wait for her<br />
to try and use the communication aids.”<br />
Functional communication can help us order<br />
and control our world, but eventually control may<br />
be severely limited or impossible. Werner-Beland<br />
(1980) says she felt the need to control events that<br />
were happen<strong>in</strong>g to her - “it is the awareness of<br />
one’s <strong>in</strong>ability to control events that produces fear.”<br />
Wilk<strong>in</strong>son (1999) also agrees on the importance of<br />
control, because <strong>in</strong> its absence, “the traveller feels<br />
alone and at the mercy of those who do not hear.”<br />
“But the worst part of it all is not talk<strong>in</strong>g. I used<br />
to enjoy company, and hav<strong>in</strong>g a good gossip.”<br />
Control is only one element of communication.<br />
Functional communication with which to control<br />
our environment is important, but would that<br />
alone make us feel any less despair<strong>in</strong>g? I th<strong>in</strong>k it<br />
goes deeper than that. People told me it was<br />
more about be<strong>in</strong>g <strong>in</strong> contact with their world <strong>in</strong><br />
the way they had always been.
Social communication is important because that<br />
is the way we have organised our lives, our<br />
groups, our contacts. It is how we def<strong>in</strong>e ourselves<br />
<strong>in</strong> terms of others and the world around us.<br />
Emotional communication is utilised <strong>in</strong> times of<br />
trouble. At some po<strong>in</strong>t most of us have issues<br />
which we feel a need to discuss, if only to make<br />
sense of them <strong>in</strong> our own m<strong>in</strong>d. We may talk to<br />
family, friends or even counsellors.<br />
“We used to have friends, but they’ve gone off<br />
now because I can’t talk to them. We used to go<br />
out to relatives’ houses for d<strong>in</strong>ner quite a lot,<br />
but we don’t go now because I can’t talk properly<br />
and it’s too difficult.”<br />
Social and emotional communication are gradually<br />
lost <strong>in</strong> progressive illness, with the certa<strong>in</strong><br />
knowledge that they will never return. Initially,<br />
people have to resort to contact at second-hand<br />
through their ma<strong>in</strong> carer who, <strong>in</strong> effect, becomes<br />
their translator, their bridge to the outside world<br />
- and there is no possibility of everyday chat or<br />
emotional confidences with others. Once the<br />
translator is unable to communicate with them,<br />
their isolation is complete.<br />
As a therapist it is very easy to feel daunted by<br />
this. After all, what have we to offer? To answer<br />
we need to take a step back, not to see a<br />
dysarthria need<strong>in</strong>g therapy, but to see the person<br />
with the dysarthria. We can sometimes get too<br />
bogged down <strong>in</strong> the specific problem without<br />
see<strong>in</strong>g the overall view. We should not only be<br />
deal<strong>in</strong>g with the problem but with the way this<br />
affects the person, their ‘groups’ and the way<br />
they live their life.<br />
While do<strong>in</strong>g the literature search for my study,<br />
almost all the papers I found which asked people<br />
with progressive diseases about their quality of life<br />
specifically excluded those with communication<br />
problems. Most of the ones deal<strong>in</strong>g with the<br />
dysarthrias were simply about measur<strong>in</strong>g and classification.<br />
Yet one particular piece of research found<br />
that what was most valued by many people with<br />
progressive disorders was a) talk<strong>in</strong>g and b) relations<br />
with family and close friends. So perhaps we should<br />
spend more time look<strong>in</strong>g at what is more important<br />
from the patient’s viewpo<strong>in</strong>t than from our own.<br />
“We hope we’re work<strong>in</strong>g with it the best way we<br />
can, but every now and aga<strong>in</strong> probably she goes<br />
away and cries a little tear and I do the same.”<br />
Benner (1985) stresses the need to look at lived<br />
experience, not just specifics. ‘The experiences of<br />
health, illness and suffer<strong>in</strong>g are trivialised by analytically<br />
separat<strong>in</strong>g the m<strong>in</strong>d and body, and by<br />
us<strong>in</strong>g research strategies that systematically<br />
exclude the lived mean<strong>in</strong>gs of those experiences’.<br />
It is vital that we see how people make sense of<br />
their illness and live with it day by day <strong>in</strong> order to<br />
offer relevant and mean<strong>in</strong>gful <strong>in</strong>put to improve<br />
their quality of life.<br />
Seedhouse (1995) talks about ‘health’, not <strong>in</strong> a<br />
medical context but <strong>in</strong> relation to the way people<br />
live their lives, and their ability to achieve their life<br />
goals; a person can be diseased and yet healthy if<br />
the ‘platform’ on which they live their life gives<br />
them the opportunities to achieve their goals. The<br />
disorders have left is to live as full a life as possible<br />
for as long as possible and, if we can f<strong>in</strong>d some<br />
way of reduc<strong>in</strong>g their isolation <strong>in</strong> order to allow<br />
this to happen, we will have done our job well.<br />
One of the ways of improv<strong>in</strong>g a person’s ‘platform’<br />
is by utilis<strong>in</strong>g their system of social support,<br />
someth<strong>in</strong>g to which most people belong <strong>in</strong> different<br />
ways. There are as many therapists of all discipl<strong>in</strong>es<br />
who say support is our job as those who say<br />
it isn’t. Perhaps we ought to def<strong>in</strong>e what we<br />
mean by support and look at it more objectively.<br />
There appear to be four areas of social support<br />
(<strong>Lang</strong>ford et al 1997):<br />
1.Instrumental - tangible aid or concrete<br />
assistance<br />
2.Informational - communication which assists<br />
problem-solv<strong>in</strong>g<br />
3.Appraisal - communication which helps the<br />
person self-evaluate, and affirms their decision<br />
mak<strong>in</strong>g<br />
4.Emotional - this imparts lik<strong>in</strong>g, admiration,<br />
respect, love, and is probably the most<br />
important way <strong>in</strong> which support is perceived.<br />
“We’ve got a daughter and grandchildren, but<br />
they don’t have much contact with us. She’s got<br />
a brother and sister locally, and another sister <strong>in</strong><br />
London, and nobody comes to see her, not even<br />
her mother.”<br />
Social support is described as an exchange of<br />
resources/reciprocal supportive actions, and, where<br />
the patient has supported others <strong>in</strong> the past, they<br />
will now be supported <strong>in</strong> their turn. With many<br />
patients, their network of support - their ‘groups’ -<br />
gradually erodes until there are few left who can<br />
provide this reciprocity. Even if they have a large<br />
network where reciprocity has worked for many<br />
years, we know that communication breakdown<br />
can cause the best of relationships to founder.<br />
As therapists we provide <strong>in</strong>strumental and <strong>in</strong>formational<br />
support <strong>in</strong> obvious ways, but perhaps<br />
also emotional and appraisal support <strong>in</strong> not so<br />
tangible form - almost as a ‘by-product’ if you will<br />
- while provid<strong>in</strong>g what is seen as be<strong>in</strong>g ‘our job’.<br />
When it comes to the stage of be<strong>in</strong>g unable to<br />
provide obvious ‘therapy’ we may consider we<br />
have noth<strong>in</strong>g more to offer. However, from the<br />
patient’s viewpo<strong>in</strong>t at that time, emotional and<br />
appraisal support to help them th<strong>in</strong>k th<strong>in</strong>gs<br />
through and make decisions may actually be more<br />
important. That we respect their feel<strong>in</strong>gs and<br />
decisions is the way <strong>in</strong> which their self-esteem and<br />
cont<strong>in</strong>u<strong>in</strong>g sense of self is confirmed. Perhaps<br />
there are two ways we can deal with this:<br />
a) support<strong>in</strong>g and tra<strong>in</strong><strong>in</strong>g the network which<br />
exists, to help members deal with the communication<br />
breakdown, and<br />
b) cont<strong>in</strong>u<strong>in</strong>g to provide support ourselves.<br />
“I don’t try to speak to people other than the<br />
family because I know they won’t understand,<br />
and I feel frustrated and embarrassed by that. I<br />
th<strong>in</strong>k it must be difficult for them, because they<br />
th<strong>in</strong>k I’m mental and they don’t know how to<br />
respond. Then that makes me upset and angry<br />
and I know there’s no way round it, so I’d rather<br />
only goal many people with severe progressive just not get <strong>in</strong>to the situation.”<br />
�<br />
professional role<br />
Read this<br />
if you want to<br />
• add life to years � or even days<br />
• get maximum benefit for your<br />
client from cont<strong>in</strong>uity of care<br />
• learn from personal reflections<br />
on academic research<br />
It is vital that we<br />
see how people<br />
make sense of<br />
their illness and<br />
live with it day<br />
by day <strong>in</strong> order<br />
to offer relevant<br />
and mean<strong>in</strong>gful<br />
<strong>in</strong>put<br />
to improve their<br />
quality of life.<br />
Photos courtesy of the Motor Neurone Disease Association<br />
SPEECH & LANGUAGE THERAPY IN PRACTICE SUMMER 2003 ��
�<br />
��<br />
professional role<br />
When communication breaks down or is difficult,<br />
both parties are often feel<strong>in</strong>g acute embarrassment<br />
and guilt. Listeners f<strong>in</strong>d problems deal<strong>in</strong>g with<br />
those whose communication is impaired, and the<br />
speaker then feels guilt and self-blame for the<br />
lack of understand<strong>in</strong>g.<br />
“Our next door neighbour comes <strong>in</strong> less and<br />
less now because she says she feels awful because<br />
she doesn’t know what she’s say<strong>in</strong>g and has to<br />
keep on say<strong>in</strong>g ‘Pardon’? She says she feels a<br />
coward, but doesn’t know how to cope with it.”<br />
As therapists we know communication is a twoway<br />
process but we still put all the pressure on the<br />
person with the problem. What about the other<br />
half of the equation? Perhaps we should spend as<br />
much time - or more - work<strong>in</strong>g<br />
with the person’s ‘translator’ and<br />
‘groups’ of communication partners<br />
to help them understand and<br />
cope with their feel<strong>in</strong>gs of <strong>in</strong>adequacy,<br />
as we do try<strong>in</strong>g to help the<br />
person f<strong>in</strong>d ways of communicat<strong>in</strong>g.<br />
In this way maybe we can<br />
reduce the amount of isolation<br />
the person suffers.<br />
As professionals, we are seen by<br />
patients as hav<strong>in</strong>g a knowledge of<br />
the disease and an understand<strong>in</strong>g<br />
of how they are feel<strong>in</strong>g. Many<br />
times, I f<strong>in</strong>d that patients will talk<br />
to me about th<strong>in</strong>gs they would<br />
never discuss with their relatives<br />
and friends for fear of distress<strong>in</strong>g them.<br />
One lady recently recalled a stored sentence on<br />
her Lightwriter after her daughter had left the<br />
room, when I asked her how she was really feel<strong>in</strong>g:<br />
“When I tell them I’m wet and they say to me <strong>in</strong><br />
that loud voice that I’m not, I want to say I’m not<br />
daft, or deaf, or stupid and my bra<strong>in</strong> is work<strong>in</strong>g<br />
f<strong>in</strong>e. I want to tell them to try and imag<strong>in</strong>e what<br />
it is like to have no use <strong>in</strong> their arms or legs or<br />
body and no speech, and to be look<strong>in</strong>g down a<br />
long dark road with no light at the end.”<br />
These th<strong>in</strong>gs had never been brought <strong>in</strong>to the<br />
open before, and she had been unable to discuss<br />
her feel<strong>in</strong>gs. She may not always wish to, especially<br />
with the family, but she knows that when<br />
she sees me she is free to do so. To me, that is a<br />
valid use of my time, as it would be to every other<br />
member of the team with whom I work.<br />
Talk<strong>in</strong>g though feel<strong>in</strong>gs with someone who listens<br />
sympathetically while rema<strong>in</strong><strong>in</strong>g objective will assist<br />
problem-solv<strong>in</strong>g, help the patient to self-evaluate<br />
and make decisions, and confirm them <strong>in</strong> their selfworth.<br />
Sometimes all that is needed to help come<br />
to terms with th<strong>in</strong>gs is to talk it through with someone<br />
who understands the problem. That is why the<br />
opportunities to do so must be provided while<br />
some communication is still possible.<br />
“If I had to say how I cope <strong>in</strong> this situation I<br />
would just say that I use bloody-m<strong>in</strong>dedness to<br />
fight it. I won’t be beaten.”<br />
Many times, I f<strong>in</strong>d<br />
that patients will<br />
talk to me about<br />
th<strong>in</strong>gs they would<br />
never discuss with<br />
their relatives and<br />
friends for fear of<br />
distress<strong>in</strong>g them.<br />
SPEECH & LANGUAGE THERAPY IN PRACTICE SUMMER 2003<br />
As for reciprocity, my reward is a much deeper<br />
understand<strong>in</strong>g of how the strands of communication<br />
impairment permeate every aspect of life, and I<br />
feel respect and deep admiration for these people<br />
who are cop<strong>in</strong>g with unimag<strong>in</strong>able horrors. Our<br />
worlds are all separate, but <strong>in</strong>terwoven; some<br />
closely, some loosely, but we all ultimately live <strong>in</strong><br />
our own world and have to face our own death.<br />
We may all have our chosen preference for how<br />
we die - few of us would choose a progressive disorder<br />
<strong>in</strong> which we have to come to terms with a<br />
series of never-end<strong>in</strong>g losses which leave us more<br />
and more at the mercy of others.<br />
“We’ve discussed resuscitation and alternative<br />
feed<strong>in</strong>g and I know she doesn’t want it.”<br />
This can place a burden on<br />
therapists. We need to address<br />
our own beliefs without be<strong>in</strong>g<br />
caught up <strong>in</strong> <strong>in</strong>dividual issues of<br />
morality. Offer communication<br />
support with<strong>in</strong> an ethical framework<br />
but rema<strong>in</strong> objective.<br />
What is really important is that<br />
our patients be given all <strong>in</strong>formation<br />
as soon as they feel<br />
ready for it, because without it<br />
they rel<strong>in</strong>quish all possibility of<br />
exercis<strong>in</strong>g control over their<br />
lives by mak<strong>in</strong>g their own choices.<br />
Unless this is done while there is<br />
still some form of communication<br />
available to them, there is<br />
no longer even the choice between discuss<strong>in</strong>g the<br />
issues or ignor<strong>in</strong>g them. For example, decisions<br />
made about end-of-life issues are not made at<br />
one po<strong>in</strong>t <strong>in</strong> time, but evolve through discussions<br />
over a period of time. Late decisions about these<br />
issues made under stress may not always be the<br />
right ones, and it may be that earlier discussion<br />
and plann<strong>in</strong>g while the person is still able to do so<br />
with some degree of control could elim<strong>in</strong>ate<br />
much distress <strong>in</strong> the term<strong>in</strong>al phase.<br />
All members of the team should be support<strong>in</strong>g each<br />
other <strong>in</strong> this, and provid<strong>in</strong>g the same <strong>in</strong>formation,<br />
and all therapists who work alone with these issues<br />
should seek out and f<strong>in</strong>d their own support. This is<br />
not someth<strong>in</strong>g which should be managed alone.<br />
“He’s fought this all the way, but he won’t talk<br />
about it. I don’t know what his f<strong>in</strong>al wishes are<br />
and that makes it very difficult for me because I<br />
won’t know if I’m do<strong>in</strong>g the right th<strong>in</strong>g or not. I<br />
would advise others <strong>in</strong> this situation to try to<br />
make them talk about important issues. I was<br />
too emotional at the beg<strong>in</strong>n<strong>in</strong>g and I didn’t<br />
realise how important it was.”<br />
The way people cope with a term<strong>in</strong>al progressive<br />
disorder is largely a result of their personality, and<br />
not everyone will want to discuss it - but everyone<br />
should be given the opportunity.<br />
I acknowledge that all this is often be<strong>in</strong>g done<br />
<strong>in</strong> vary<strong>in</strong>g degrees. However, it is often done with<br />
hesitation, and with a feel<strong>in</strong>g that ‘this isn’t my<br />
job’. Because we work closely with people <strong>in</strong> the<br />
earlier stages of disease, we build relationships<br />
which become important to both, and eventually<br />
speech and language therapists may be one of the<br />
few contacts these people have who do not feel<br />
embarrassed, ashamed or guilty for not understand<strong>in</strong>g<br />
their attempts at communication.<br />
Sometimes, we may even be the only ones who do<br />
understand them.<br />
“You can’t let it take over all the time, but there<br />
are times when I could break my heart cry<strong>in</strong>g for<br />
him. Now, I’ve adjusted to it, because there isn’t<br />
any choice. It’s like hav<strong>in</strong>g children, isn’t it? You<br />
just mop the sick up and carry on.”<br />
Margaret White is cl<strong>in</strong>ical lead for adult<br />
progressive disorders at Mansfield and<br />
District pct, Nott<strong>in</strong>ghamshire, and works as<br />
a member of the multidiscipl<strong>in</strong>ary team at<br />
Chatsworth Rehabilitation Centre. This article<br />
is based on a small scale research study<br />
<strong>in</strong>volv<strong>in</strong>g <strong>in</strong>-depth discussions with both<br />
patients with progressive diseases and their<br />
carers. Some quotes are verbatim, while<br />
others are expanded from phrases which were<br />
necessarily brief due to severe communication<br />
problems. In all cases the mean<strong>in</strong>g of the<br />
communication was validated by the patient.<br />
References<br />
Benner, P. (1985) Quality of life: a phenomenological<br />
perspective on explanation, prediction, and<br />
understand<strong>in</strong>g <strong>in</strong> nurs<strong>in</strong>g science. Advances <strong>in</strong><br />
Nurs<strong>in</strong>g Science 8 (1) 1-14.<br />
<strong>Lang</strong>ford, C.P.H., Bowsher, J., Maloney, J.P. & Lillis,<br />
P.P. (1997) Social support: a conceptual analysis.<br />
Journal of Advanced Nurs<strong>in</strong>g 25 (1) 95-100.<br />
Seedhouse, D. (1995) Fortress NHS: A philosophical<br />
review of the NHS. John Wiley & Sons.<br />
Werner-Beland, J.A. (1980) Grief responses to long<br />
term illness and disability. Reston Publish<strong>in</strong>g Co USA.<br />
Wilk<strong>in</strong>son, S. (1999) Scher<strong>in</strong>g Plough Cl<strong>in</strong>ical<br />
Lecture. Communication: it makes a difference.<br />
Journal of Advanced Nurs<strong>in</strong>g 22 (1) 17-20.<br />
White, M. (2001) A qualitative study of the views<br />
and perceived needs of adults with progressive<br />
neurological disorders and their carers: A focus on<br />
communication. Submitted <strong>in</strong> part fulfilment of<br />
the regulations for the MSc CPD (Health)<br />
University of Greenwich (Unpublished).<br />
Resources<br />
Lightwriter is available from Toby Churchill Ltd,<br />
Cambridge.<br />
Reflections<br />
• Do I know the different social groups my<br />
client is part of� and see therapy <strong>in</strong> this context?<br />
• Do I offer <strong>in</strong>strumental� <strong>in</strong>formational�<br />
appraisal and emotional support to clients<br />
as appropriate?<br />
• Do I seek support from fellow team members<br />
and other sources when my work is<br />
challeng<strong>in</strong>g?
So much<br />
to say<br />
In<br />
Iwas diagnosed with Motor Neurone Disease<br />
<strong>in</strong> 1999. I am 54 years old and the illness has<br />
now taken away the use of my arms and legs<br />
and left me unable to speak.<br />
If only I could talk...it would all be bearable<br />
then!<br />
The loss of my voice must be the hardest th<strong>in</strong>g<br />
to take. So much I want to say to people (both<br />
nice and sometimes not so nice), and I can only<br />
grunt and nod like an imbecile. This is why cont<strong>in</strong>uity<br />
of care is important; a carer that is familiar with<br />
my needs makes it easier and less distress<strong>in</strong>g for<br />
both me and the carer. There is noth<strong>in</strong>g worse than<br />
not be<strong>in</strong>g able to let someone know what is wrong<br />
- it leaves them feel<strong>in</strong>g they haven’t done their job<br />
properly, and me with the problem unsolved.<br />
If my voice had rema<strong>in</strong>ed unaffected I would<br />
probably have been able to cont<strong>in</strong>ue work<strong>in</strong>g, thus<br />
keep<strong>in</strong>g my bra<strong>in</strong> occupied at least. Nevertheless I<br />
consider myself lucky that I still have a reasonable<br />
quality of life thanks to the wonderful support I<br />
receive from my carers, nurses, physiotherapist,<br />
speech and language therapists, aromatherapist<br />
and the Motor Neurone Disease Association, who<br />
are always there when you need them.<br />
Another th<strong>in</strong>g that makes my life bearable is my<br />
computer which I am able to operate by a button<br />
that I squeeze between my knees thanks to a<br />
clever piece of software called Easy Keys that was<br />
supplied by the Motor Neurone Disease<br />
Association. In addition to written communication<br />
I am able to use e-mail, send and receive<br />
faxes, read books and even shop onl<strong>in</strong>e. I am also<br />
able to manage my f<strong>in</strong>ances and pay my bills<br />
us<strong>in</strong>g <strong>in</strong>ternet bank<strong>in</strong>g. This all takes a lot of time<br />
and effort but, when you can’t do a lot for yourself,<br />
what you can do becomes your only mission.<br />
The problem with Motor Neurone Disease is<br />
that you never know how long you have got left.<br />
As a result, I have now celebrated my last<br />
Christmas four times.<br />
Although I can hardly move a muscle, people<br />
keep tell<strong>in</strong>g me that I look well - and I do feel well<br />
most of the time. Before I had Motor Neurone<br />
Disease I smoked heavily, drank too much and<br />
lived on a diet of junk food and stress. Now I do<br />
not smoke or dr<strong>in</strong>k and live on a healthy diet. In<br />
fact, it is likely that if I had not got Motor<br />
Neurone Disease I would be dead by now.<br />
I feel that it is important to take one day at a<br />
time and make the most of whatever ability you<br />
have left <strong>in</strong> the knowledge that th<strong>in</strong>gs will be<br />
worse <strong>in</strong> a month’s time. The rapidly progressive<br />
shar<strong>in</strong>g his experience<br />
of Motor Neurone<br />
Disease, David Parker<br />
wanted to raise<br />
understand<strong>in</strong>g among<br />
professionals of the<br />
positive th<strong>in</strong>gs they can do<br />
to support people affected<br />
by a progressive disorder.<br />
nature of the illness means that constant adaptations<br />
are required. Unfortunately, <strong>in</strong> many cases,<br />
equipment takes so long to obta<strong>in</strong> that its w<strong>in</strong>dow<br />
of use is past before it arrives.<br />
Although at the moment I cont<strong>in</strong>ue to enjoy a<br />
reasonable quality of life I live <strong>in</strong> constant fear of<br />
what the future may hold, and this only adds to<br />
the stress caused by the illness. It may well be that<br />
I would never opt for Assisted Suicide if it were to<br />
become available. However, know<strong>in</strong>g the option<br />
was there would alleviate much of my anxiety and<br />
be a source of great comfort.<br />
I would like to say thank you to all those who<br />
have been <strong>in</strong>volved <strong>in</strong> my care. You really do<br />
make a difference and I hope that your support<br />
will cont<strong>in</strong>ue to make my life bearable <strong>in</strong> the<br />
future, however long that is!<br />
The Motor Neurone Disease Association for<br />
England, Wales and Northern Ireland is at PO<br />
Box 246, Northampton NN1 2PR, tel. 01604<br />
250505, fax 01604 638289, helpl<strong>in</strong>e 08457<br />
626262, www.mndassociation.org. The<br />
Scottish Motor Neurone Disease Association<br />
is at 76 Firhill Road, Glasgow G20 7BA, tel.<br />
0141 945 1077, fax 0141 945 2578,<br />
www.scotmnd.org.uk.<br />
Postscript<br />
David Parker died aged 54 <strong>in</strong> March 2003, some<br />
four years s<strong>in</strong>ce be<strong>in</strong>g diagnosed with Motor<br />
Neurone Disease, and only weeks after writ<strong>in</strong>g<br />
this article.<br />
Reflections<br />
• Do we have a policy to make all<br />
clients aware of relevant voluntary<br />
organisations?<br />
• Do we have a well�managed system<br />
for access<strong>in</strong>g and adapt<strong>in</strong>g equipment?<br />
• Do we offer as much cont<strong>in</strong>uity of<br />
care as we can?<br />
professional role<br />
news extra...news extra...<br />
Hear<strong>in</strong>g concerns<br />
A charity for hard-of-hear<strong>in</strong>g people <strong>in</strong> the UK is<br />
tak<strong>in</strong>g the opportunity of its 50th anniversary to<br />
publicise its work.<br />
Hear<strong>in</strong>g Concern is a volunteer led organisation<br />
whose ma<strong>in</strong> objectives are to provide advice,<br />
<strong>in</strong>formation and support, to promote communication<br />
access and to raise public and professional<br />
awareness of the issues associated with hear<strong>in</strong>g<br />
loss. Their chief executive says, “Research shows<br />
that as a result of an age<strong>in</strong>g population the number<br />
of people experienc<strong>in</strong>g hear<strong>in</strong>g loss will<br />
<strong>in</strong>crease by as much as 20-25 per cent by 2015.<br />
Furthermore, noise <strong>in</strong>duced hear<strong>in</strong>g loss could<br />
exacerbate this figure. Hear<strong>in</strong>g Concern is dedicated<br />
to address<strong>in</strong>g the needs of this <strong>in</strong>creas<strong>in</strong>g<br />
group of people.”<br />
Hear<strong>in</strong>g Concern tel. 020 8743 1110, www.hear<strong>in</strong>gconcern.org.uk.<br />
Stroke developments<br />
The All-Party Parliamentary Group for Stroke held<br />
its <strong>in</strong>augural meet<strong>in</strong>g earlier this year. MPs were<br />
concerned to hear about cont<strong>in</strong>u<strong>in</strong>g variations <strong>in</strong><br />
stroke care provision across England and Wales<br />
and will be ask<strong>in</strong>g parliamentary questions about<br />
this.<br />
Meanwhile, the Stroke Association has announced<br />
that, as current resources plans for stroke are often<br />
based on <strong>in</strong>formation that is 20 years old, it will be<br />
fund<strong>in</strong>g a £180,000 population based study.<br />
Researchers will study <strong>in</strong>cidence, reoccurrence and<br />
outcome of stroke <strong>in</strong> a large population and results<br />
will <strong>in</strong>form plann<strong>in</strong>g of stroke services and preventative<br />
strategies.<br />
The Stroke Association has moved to Stroke<br />
House, 240 City Road, London EC1V 2PR.<br />
Telephone numbers rema<strong>in</strong> the same <strong>in</strong>clud<strong>in</strong>g<br />
the switchboard on 020 7566 0300. The National<br />
Stroke Helpl<strong>in</strong>e number is 0845 30 33 100.<br />
Mak<strong>in</strong>g decisions<br />
A consortium of twenty voluntary organisations is<br />
call<strong>in</strong>g on the government to make parliamentary<br />
time for mental capacity legislation <strong>in</strong> England<br />
and Wales.<br />
The Mak<strong>in</strong>g Decisions Alliance wants to protect<br />
people who cannot make decisions, or who need<br />
help to make decisions about their money, health<br />
and welfare. It believes the clear rights set out <strong>in</strong><br />
Scottish legislation <strong>in</strong> 2000 would benefit professionals,<br />
patients and carers. It is call<strong>in</strong>g on the<br />
government to def<strong>in</strong>e what mental capacity is,<br />
enable people to make as many of their own<br />
choices for as long as possible, and ensure people<br />
have access to support to help them make and<br />
communicate their decisions. In addition, it wants<br />
protection for people who cannot make their<br />
own decisions and for people to be able to make<br />
plans for the future while they are still able.<br />
Member organisations <strong>in</strong>clude the Alzheimer’s<br />
Society, The Down’s Syndrome Association,<br />
Mencap, Scope and the Stroke Association.<br />
www.mak<strong>in</strong>gdecisions.org.uk<br />
SPEECH & LANGUAGE THERAPY IN PRACTICE SUMMER 2003 ��
person centred plann<strong>in</strong>g<br />
Read this<br />
if you •face people with acute/<br />
chronic / progressive<br />
shifts<br />
•want to be responsive<br />
rather than prescriptive<br />
•cont<strong>in</strong>ue to be<br />
surprised by clients<br />
��<br />
Panna Chavda Laura Helsby<br />
SPEECH & LANGUAGE THERAPY IN PRACTICE SUMMER 2003<br />
Oats not<br />
How good are you at<br />
person centred plann<strong>in</strong>g<br />
and reflective practice?<br />
Professionals were put to<br />
the test when Robert, who<br />
already had eat<strong>in</strong>g and<br />
dr<strong>in</strong>k<strong>in</strong>g limitations due to<br />
cerebral palsy, suffered<br />
dysphagia follow<strong>in</strong>g a<br />
stroke at the age of 75.<br />
But, three years later, Robert<br />
had had his PEG removed,<br />
was enjoy<strong>in</strong>g his porridge<br />
aga<strong>in</strong>, and beg<strong>in</strong>n<strong>in</strong>g a new<br />
life <strong>in</strong> a community<br />
placement near his family.<br />
Here, Lorra<strong>in</strong>e Speirs tells us<br />
how he did it.<br />
B<br />
orn <strong>in</strong> 1920 and <strong>in</strong> <strong>in</strong>stitutional care<br />
s<strong>in</strong>ce the age of 12, Robert had<br />
grown up with dysarthria associated<br />
with cerebral palsy. When he<br />
suffered a stroke <strong>in</strong> 1995, the prognosis<br />
was not encourag<strong>in</strong>g. The<br />
complex <strong>in</strong>teraction of cerebral palsy, age<strong>in</strong>g and<br />
a stroke meant he had muscle weakness and poor<br />
voluntary control of oral and pharyngeal structures,<br />
his respiration was shallow and weak, he<br />
was unable to receive necessary nutrition or<br />
hydration orally and he was medically unstable.<br />
As a determ<strong>in</strong>ed man, who considered his eat<strong>in</strong>g<br />
and dr<strong>in</strong>k<strong>in</strong>g to be valuable skills that marked his<br />
<strong>in</strong>dependence, dysphagia was more of a blow to<br />
Robert than the loss of his mobility. Due to his persistence<br />
and positive outlook, the multidiscipl<strong>in</strong>ary<br />
team members were challenged to provide a<br />
range of support, which proved worthwhile.<br />
Interested <strong>in</strong> <strong>in</strong>teraction<br />
Robert was described as ‘mute’ when he arrived<br />
at the Royal Scottish National Hospital at the age<br />
of 35. Thirty two years later, <strong>in</strong> 1982, he was<br />
referred to speech and language therapy by nurs-<br />
<strong>in</strong>g care staff for support <strong>in</strong> develop<strong>in</strong>g communication<br />
skills. Brief <strong>in</strong>formation states that he was<br />
alert and <strong>in</strong>terested <strong>in</strong> <strong>in</strong>teraction, non-verbal but<br />
with a range of appropriate vocalisations. He was<br />
reported to be equally sociable with nurs<strong>in</strong>g care<br />
staff and the 20+ other residents <strong>in</strong> his ward. He<br />
was prescribed medication to reduce saliva production<br />
as he had poor lip seal and limited tongue<br />
control that resulted <strong>in</strong> drool<strong>in</strong>g.<br />
From referral <strong>in</strong> 1982 to 1988, Robert was supported<br />
to develop his expressive skills us<strong>in</strong>g<br />
Makaton sign<strong>in</strong>g with limited success due to his<br />
physical limitations. By 1989, he was convey<strong>in</strong>g his<br />
messages us<strong>in</strong>g natural gesture with some<br />
Makaton sign<strong>in</strong>g and facial expression, and was<br />
<strong>in</strong>troduced to a voice output communication aid.<br />
An Exeter lip sensor was brought <strong>in</strong> for eight<br />
weeks <strong>in</strong> November 1989 after a request from<br />
Robert to help manage his saliva. Robert made<br />
excellent progress by <strong>in</strong>creas<strong>in</strong>g awareness of his<br />
oral limitations and exercis<strong>in</strong>g regularly. After<br />
regular blocks of therapy to develop his expressive<br />
skills, Robert progressed from an Introtalker<br />
to ORAC communication aid <strong>in</strong> December 1994.<br />
He was able to use this effectively to request,<br />
comment and tell jokes.<br />
In November 1995, after a couple of chest <strong>in</strong>fections,<br />
Robert was admitted to the local acute hospital<br />
with pneumonia, congestive heart failure<br />
and a stroke. After six days he was discharged<br />
with a nasogastric tube <strong>in</strong> place as this acute<br />
episode had left him without a swallow. Robert<br />
was very weak and <strong>in</strong> low mood. His mouth<br />
looked dry and no dry swallow was observed <strong>in</strong><br />
over three m<strong>in</strong>utes. He was unable to swallow on<br />
request and not alert enough to attempt further<br />
assessment. Seven days after his stroke he was<br />
unable to approximate lip seal or to move his<br />
tongue on request. Gentle stimulation with a sterile<br />
swab produced slight elevation of the soft<br />
palate but the gag and swallow reflexes were<br />
absent. Robert had problems <strong>in</strong> the preparatory,<br />
oral and pharyngeal stages of swallow<strong>in</strong>g.<br />
Oral feed<strong>in</strong>g was unsafe. The dietitian and nurs<strong>in</strong>g<br />
care staff established a nasogastric tube feed<strong>in</strong>g<br />
protocol. I visited Robert every two days to assess<br />
any change and, after two weeks, Robert was still<br />
unable to produce a dry swallow despite attempts<br />
at stimulat<strong>in</strong>g oral sensation by thermal stimulation<br />
(<strong>Lang</strong>ley, 1988). After discussion with more experienced<br />
colleagues and the suggestion that perhaps<br />
an automatic swallow response could be triggered<br />
by a bolus <strong>in</strong> Robert’s mouth, a half teaspoon of<br />
iced water was attempted. This caused a great deal<br />
of cough<strong>in</strong>g but did not trigger a swallow.<br />
The team felt Robert’s pre-morbid dysarthria,
so simple<br />
susceptibility to chest <strong>in</strong>fections, general physical<br />
weakness and absence of swallow were evidence<br />
enough of his high risk of aspiration without videofluoroscopy.<br />
By this time the nasogastric tube had<br />
had to be replaced twice. We agreed a multidiscipl<strong>in</strong>ary<br />
meet<strong>in</strong>g, which <strong>in</strong>cluded Robert, to discuss<br />
options for long-term support.<br />
Although unhappy and weak, Robert accepted<br />
that he was not able to eat or dr<strong>in</strong>k safely and<br />
agreed to be assessed for suitability to have a percutaneous<br />
endoscopic gastrostomy (PEG) fitted. After<br />
explanation of the details and times of tube feed<strong>in</strong>g,<br />
Robert expressed concern that he would miss his<br />
daily activities, so the dietitian agreed to work with<br />
ward staff to rearrange tube feed times accord<strong>in</strong>gly.<br />
Lifted spirits<br />
Despite lack of dentition, a programme of oral<br />
hygiene was recommended to promote oral<br />
health. This <strong>in</strong>cluded swabb<strong>in</strong>g Robert’s gums<br />
and tongue to remove any residue and moisten<strong>in</strong>g<br />
his lips with a lip balm. With<strong>in</strong> a week the<br />
ward requested a reassessment of Robert’s swallow<br />
as his care leader reported he had observed a<br />
swallow only seconds after swabb<strong>in</strong>g Robert’s<br />
mouth. Laryngeal movement and two <strong>in</strong>complete<br />
swallows were observed after<br />
brush<strong>in</strong>g and Robert was able to<br />
cough and attempt a dry swallow<br />
on request. This slight improvement<br />
lifted Robert’s spirits considerably<br />
and the therapist demonstrated<br />
the ic<strong>in</strong>g and brush<strong>in</strong>g<br />
procedures to nurs<strong>in</strong>g care staff<br />
who agreed to work it <strong>in</strong>to<br />
Robert’s oral hygiene time.<br />
Nurs<strong>in</strong>g care staff were determ<strong>in</strong>ed<br />
to carry out any procedures<br />
to try to stimulate a swallow and<br />
kept a tally of swallows observed. I reviewed this<br />
weekly and, although his swallow was re-emerg<strong>in</strong>g,<br />
Robert was still unsafe for oral <strong>in</strong>take.<br />
A year later, by January 1996, Robert was ga<strong>in</strong><strong>in</strong>g<br />
weight and strength. Dur<strong>in</strong>g weekly reviews he<br />
was now able to push a teaspoon out of his mouth<br />
with his tongue, but still not able to produce a<br />
consistent swallow. The cont<strong>in</strong>ued efforts of nurs<strong>in</strong>g<br />
care staff and the speech and language therapist<br />
were bolstered by Robert’s <strong>in</strong>sistence on carry<strong>in</strong>g<br />
out his exercises three to four times a day.<br />
Aged 76, Robert had his PEG fitted <strong>in</strong> February<br />
1996. He was physically improv<strong>in</strong>g but the realisation<br />
that he may not taste or choose food aga<strong>in</strong><br />
contributed to his depressive feel<strong>in</strong>gs. In an<br />
attempt to address some of his isolation and loss,<br />
Robert had his PEG feed at mealtimes to help him<br />
We agreed a<br />
multidiscipl<strong>in</strong>ary<br />
meet<strong>in</strong>g, which<br />
<strong>in</strong>cluded Robert,<br />
to discuss options<br />
for long-term<br />
support.<br />
experience the associated smells and activity.<br />
Russell & Hill (1992) and Scope (2000) discuss such<br />
issues as be<strong>in</strong>g major contribut<strong>in</strong>g factors to the<br />
quality of life and self-worth of a person experienc<strong>in</strong>g<br />
feed<strong>in</strong>g and swallow<strong>in</strong>g difficulties.<br />
By July 1996, Robert was attend<strong>in</strong>g a weekly<br />
communication group when he <strong>in</strong>dicated he<br />
wanted to try to taste th<strong>in</strong>gs aga<strong>in</strong>. Ic<strong>in</strong>g and<br />
brush<strong>in</strong>g exercises had been carried out daily at<br />
Robert’s <strong>in</strong>sistence and he now had some limited<br />
control of his tongue and could produce two to<br />
three swallows a few m<strong>in</strong>utes after the exercises.<br />
Robert was given tastes of lemon, grapefruit and<br />
chocolate (his favourite) on swabs after each<br />
exercise session and, after one month clear of<br />
chest <strong>in</strong>fections, was able to tolerate half teaspoon<br />
tastes of thick yoghurt - up to a maximum<br />
of three teaspoonfuls at each sitt<strong>in</strong>g. Although<br />
more physically limited s<strong>in</strong>ce his stroke, he was<br />
able to feed himself.<br />
This cont<strong>in</strong>ued until April 1997 when Robert was<br />
be<strong>in</strong>g considered for a community placement and<br />
was anxious to be able to eat more. As he had<br />
experienced no chest <strong>in</strong>fections and was ga<strong>in</strong><strong>in</strong>g<br />
weight, it was agreed to <strong>in</strong>crease food tastes with<br />
a dysphagic diet and liquids thickened to a double<br />
cream consistency. Robert was<br />
advised to be cautious and build<br />
up oral <strong>in</strong>take slowly along with<br />
his ability to control his swallow.<br />
He was delighted.<br />
With<strong>in</strong> a month Robert had<br />
ga<strong>in</strong>ed sufficient weight that his<br />
PEG feed was reduced to less than<br />
a third of his daily nutritional<br />
need. He had experienced one<br />
chest <strong>in</strong>fection, which cleared up<br />
with a course of antibiotics.<br />
S<strong>in</strong>ce his stroke, the medication<br />
to reduce saliva had been withdrawn. Hav<strong>in</strong>g<br />
returned to oral feed<strong>in</strong>g, Robert had experienced<br />
an <strong>in</strong>crease <strong>in</strong> drool dur<strong>in</strong>g and after eat<strong>in</strong>g and<br />
was highly aware of this. Reluctant to reduce oral<br />
moisture or the beneficial effect saliva has <strong>in</strong><br />
assist<strong>in</strong>g digestion, he was helped to manage this<br />
by verbal prompts to swallow before and after<br />
each mouthful and by keep<strong>in</strong>g a small hand towel<br />
at the side of his wheelchair. He cont<strong>in</strong>ued to<br />
ma<strong>in</strong>ta<strong>in</strong> a satisfactory weight. Ic<strong>in</strong>g and brush<strong>in</strong>g<br />
was now replaced by swallow<strong>in</strong>g practice with a<br />
dysphagic diet three times a day and thickened<br />
liquids. Robert no longer needed nutritional support<br />
from the PEG and it was removed <strong>in</strong> August<br />
1997.<br />
In February 1999, after a number of visits and<br />
tra<strong>in</strong><strong>in</strong>g sessions with new carers, Robert moved<br />
person centred plann<strong>in</strong>g<br />
to a community placement near his family after<br />
44 years <strong>in</strong> hospital.<br />
Significant factors<br />
Robert’s motivation and the dedication of nurs<strong>in</strong>g<br />
care staff were significant factors <strong>in</strong> the successful<br />
outcome. The accessibility of the on site speech<br />
and language therapist and professional support<br />
from more experienced therapists with<strong>in</strong> the<br />
learn<strong>in</strong>g disabilities team also had an impact on<br />
decision mak<strong>in</strong>g and <strong>in</strong>tervention strategies.<br />
Although there is limited literature on return to<br />
oral feed<strong>in</strong>g after PEG <strong>in</strong> the learn<strong>in</strong>g disabled<br />
population, <strong>Lang</strong>more et al (1998) and Logemann<br />
(1983) discuss <strong>in</strong>terest<strong>in</strong>g comparisons “between<br />
the elderly and learn<strong>in</strong>g disabled” with regard to<br />
dysphagia. These client groups can share a number<br />
of risk factors, which <strong>in</strong>dicate their vulnerability to<br />
swallow<strong>in</strong>g difficulties.<br />
Normal age<strong>in</strong>g produces significant physiological<br />
changes <strong>in</strong> swallow<strong>in</strong>g function. Poor dentition can<br />
decrease chew<strong>in</strong>g ability, reduced muscle strength<br />
can affect palatal pressure and lip seal, and<br />
reduced airway closure lengthens swallow<strong>in</strong>g<br />
apnoea time. Less efficient chew<strong>in</strong>g takes longer to<br />
prepare a bolus, which is then poorly controlled.<br />
This can result <strong>in</strong> oral or pharyngeal spillage.<br />
Around the age of 70 years, overall efficiency of<br />
the swallow decreases which can result <strong>in</strong> the<br />
need for a second swallow to clear residual materials,<br />
an <strong>in</strong>dication of the reduction <strong>in</strong> flexibility of<br />
neuromuscular control. Intensity of taste and<br />
smell also reduce and some medications leave an<br />
unpleasant taste, which can result <strong>in</strong> a lack of<br />
<strong>in</strong>terest <strong>in</strong> eat<strong>in</strong>g and dr<strong>in</strong>k<strong>in</strong>g. The result can be<br />
weight loss and an <strong>in</strong>crease <strong>in</strong> susceptibility to further<br />
medical complications.<br />
Logemann (1993) describes a higher risk of<br />
oesophageal dysfunction and acquired oropharyngeal<br />
disorder when the age<strong>in</strong>g person experiences<br />
a stroke or has a degenerative condition<br />
such as Park<strong>in</strong>son’s.<br />
In addition to the normal effects of age<strong>in</strong>g, a<br />
person with cerebral palsy experiences <strong>in</strong>creased<br />
respiratory system difficulties with greater susceptibility<br />
to pulmonary disorders, slower reflexes<br />
and slower process<strong>in</strong>g of <strong>in</strong>formation by the bra<strong>in</strong><br />
(Scope, 2000).<br />
Can the effects of premature age<strong>in</strong>g be seen <strong>in</strong><br />
people with learn<strong>in</strong>g disabilities who have cerebral<br />
palsy? It seems possible that a body already<br />
stressed by the limit<strong>in</strong>g effects of cerebral palsy<br />
would exhibit muscle fatigue, loss of compensatory<br />
strategies and reduced flexibility. But what impact<br />
has the close support of carers and <strong>in</strong>volvement of<br />
professionals <strong>in</strong> the early identification of such<br />
SPEECH & LANGUAGE THERAPY IN PRACTICE SUMMER 2003 ��<br />
�
��<br />
person centred plann<strong>in</strong>g<br />
� changes? Robert’s symptoms emerged over a protracted<br />
period of time, which may have been<br />
accepted by carers as the result of age<strong>in</strong>g on an<br />
already affected swallow<strong>in</strong>g ability, rather than<br />
signs of an additional acute episode.<br />
True test<br />
Assessment and management of dysphagia<br />
should be a true test of person centred plann<strong>in</strong>g<br />
and reflective practice, as decisions made have far<br />
reach<strong>in</strong>g consequences. Non-oral feed<strong>in</strong>g has<br />
implications for quality of life, sociability and selfesteem,<br />
not only for the person concerned, but<br />
also impact<strong>in</strong>g on carers and family.<br />
Logemann (1983) describes an <strong>in</strong>terest<strong>in</strong>g hierarchy<br />
of <strong>in</strong>tervention with compensatory strategies,<br />
look<strong>in</strong>g first at postural changes then heighten<strong>in</strong>g<br />
sensory <strong>in</strong>put and f<strong>in</strong>ally changes <strong>in</strong> the way a<br />
person is fed. From cl<strong>in</strong>ical experience, alteration<br />
of food consistencies along with position<strong>in</strong>g<br />
would be addressed <strong>in</strong>itially to seek to reduce the<br />
risk of aspiration or chok<strong>in</strong>g.<br />
This would be re<strong>in</strong>forced by<br />
environmental support such as<br />
carer tra<strong>in</strong><strong>in</strong>g and other <strong>in</strong>tervention<br />
either <strong>in</strong>direct or direct.<br />
Supplements/alternatives have<br />
an <strong>in</strong>itial cost. Would the same<br />
effects be obta<strong>in</strong>ed by modify<strong>in</strong>g<br />
posture and environment and<br />
review<strong>in</strong>g over time? I have concerns<br />
that time may compound<br />
health issues when the client is<br />
already vulnerable. Due to the<br />
comb<strong>in</strong>ation of difficulties<br />
Robert presented, the multidiscipl<strong>in</strong>ary<br />
team felt the first<br />
priority was to f<strong>in</strong>d an answer<br />
to his nutritional needs.<br />
Although such immediate <strong>in</strong>tervention<br />
can remove some element<br />
of control and responsibility<br />
from the client and carers,<br />
we felt that, once he was stronger and more medically<br />
stable, he would be better able to participate<br />
and benefit from further <strong>in</strong>tervention. For Robert,<br />
this method of <strong>in</strong>tervention proved beneficial.<br />
The experience of work<strong>in</strong>g with Robert also<br />
raised a number of questions about how speech<br />
and language therapists deal with non-oral feed<strong>in</strong>g<br />
after a PEG is fitted. Do we perhaps th<strong>in</strong>k we<br />
have little to offer? If, after a stroke, aphasic difficulties<br />
are identified, <strong>in</strong>tervention is offered to<br />
help the client re-learn functions. Yet, although<br />
45 per cent of cerebrovascular accident admissions<br />
to hospital have some degree of dysphagia<br />
detected and reduced nutritional status and respiratory<br />
problems are associated with <strong>in</strong>creased<br />
death rate compared with stroke and no dysphagic<br />
problems (SIGN, 1997), most <strong>in</strong>volvement<br />
<strong>in</strong> dysphagia after a stroke and PEG relies on<br />
annual assessment and little else. Clarke (1999)<br />
described support given to her husband to relearn<br />
everyday functions like brush<strong>in</strong>g his teeth,<br />
...regular<br />
assessment after<br />
PEG is an essential<br />
part of dysphagia<br />
management<br />
whether the<br />
chosen strategy is<br />
rehabilitation or a<br />
comb<strong>in</strong>ation of<br />
two methods of<br />
feed<strong>in</strong>g.<br />
SPEECH & LANGUAGE THERAPY IN PRACTICE SUMMER 2003<br />
yet his potentially life threaten<strong>in</strong>g feed<strong>in</strong>g problems<br />
were assessed, identified, non-oral feed<strong>in</strong>g<br />
implemented and no further support was offered<br />
to re-learn any possible feed<strong>in</strong>g skills.<br />
In Lucas (1998), two PEG fed patients had speech<br />
and language therapy reviews and were offered<br />
swallow<strong>in</strong>g therapy. Both returned to oral feed<strong>in</strong>g,<br />
one while still <strong>in</strong> hospital and the other two<br />
months after discharge. This supports Park et al<br />
(1997) who stated that, for patients with severe<br />
swallow<strong>in</strong>g difficulties, speech and language therapy<br />
<strong>in</strong>put and ongo<strong>in</strong>g review make a significant<br />
difference to management and outcome. The<br />
timescale is relatively short compared with the<br />
case of Robert, one of the differences <strong>in</strong> work<strong>in</strong>g<br />
with people with learn<strong>in</strong>g disabilities.<br />
Communicat<strong>in</strong>g Quality 2 (RCSLT, 1996) states<br />
that the speech and language therapist should<br />
not make the management decisions around dysphagia<br />
alone and neither should they be made<br />
lightly by the multidiscipl<strong>in</strong>ary team. Robert was<br />
able to express his desire to<br />
taste and dr<strong>in</strong>k aga<strong>in</strong> and cont<strong>in</strong>ued<br />
to do so when he was<br />
advised that it wasn’t safe for<br />
him to be fed any other way<br />
than through a PEG. Neither<br />
Robert nor his care staff were<br />
ready to consider he may<br />
never swallow aga<strong>in</strong>. Lucas<br />
(1998) identified the need to<br />
provide manageable <strong>in</strong>formation<br />
at the appropriate time.<br />
By agree<strong>in</strong>g stages of <strong>in</strong>tervention<br />
to achieve a possible swallow<br />
- structured, simple,<br />
sequential protocols as his oral<br />
control strengthened - we<br />
were able to respect Robert’s<br />
wishes to attempt to eat<br />
aga<strong>in</strong>. Staged support, as and<br />
when it was required, reduced<br />
dependence on the speech<br />
and language therapist while protect<strong>in</strong>g Robert<br />
from the risk and fear of aspiration. If the client<br />
chooses a different course from that recommended<br />
by professionals, this should not <strong>in</strong>fluence<br />
the quality of care he subsequently receives.<br />
In this way he actually achieved his goal, which we<br />
had not considered a possible prognosis.<br />
From practice with multidiscipl<strong>in</strong>ary teams and<br />
experience ga<strong>in</strong>ed from work<strong>in</strong>g with Robert, I<br />
conclude that regular assessment after PEG is an<br />
essential part of dysphagia management whether<br />
the chosen strategy is rehabilitation or a comb<strong>in</strong>ation<br />
of two methods of feed<strong>in</strong>g. As this study<br />
demonstrates, through determ<strong>in</strong>ation and consistency<br />
of support Robert was able to enjoy his porridge<br />
aga<strong>in</strong>.<br />
Lorra<strong>in</strong>e Speirs is a speech and language therapist<br />
<strong>in</strong> Forth Valley. This article is based on a case study<br />
prepared for the Manchester Advanced (Level 3)<br />
Dysphagia Course, ALD Module.<br />
References<br />
Clarke, M. (1999) To eat or not to eat. Bullet<strong>in</strong> of<br />
the Royal College of <strong>Speech</strong> & <strong>Lang</strong>uage<br />
Therapists 562: 7-8.<br />
<strong>Lang</strong>ley J. (1988) Work<strong>in</strong>g with Swallow<strong>in</strong>g<br />
Disorders. W<strong>in</strong>slow Press.<br />
<strong>Lang</strong>more, S.E., Terpenn<strong>in</strong>g, M.S., Schork, A.,<br />
Chen, Y., Murray, J.T., Lopat<strong>in</strong>, D. & Logemann,<br />
J.A. (1983) Evaluation and Treatment of<br />
Swallow<strong>in</strong>g Disorders. College Hill Press.<br />
Logemann, J.A., Shananhan, T., Rademaker, A.W.,<br />
Kahrilas, P.J., Lazar, R. & Halper, A. (1993)<br />
Oropharyngeal Swallow<strong>in</strong>g after Stroke.<br />
Dysphagia 8: 230-234.<br />
Lucas, C. (1998) Dysphagia: does SLT <strong>in</strong>put make a<br />
difference? Bullet<strong>in</strong> of the Royal College of<br />
<strong>Speech</strong> & <strong>Lang</strong>uage Therapists 554: 10-11.<br />
Park, C., Wyatt, R. & O’Neill, P. (1997) Chronic dysphagia:<br />
The case for periodic reviews. Bullet<strong>in</strong> of<br />
the Royal College of <strong>Speech</strong> & <strong>Lang</strong>uage<br />
Therapists 541: 13-14.<br />
RCSLT (1996) Communicat<strong>in</strong>g Quality 2. Royal<br />
College of <strong>Speech</strong> & <strong>Lang</strong>uage Therapists,<br />
London.<br />
Russell, A. & Hill, P. (1992) Transitional Feed<strong>in</strong>g -<br />
The Team Approach (2nd ed). JFC Foundation,<br />
Australia.<br />
SCOPE (2000) An Introduction to Age<strong>in</strong>g and<br />
Cerebral Palsy.<br />
Scottish Intercollegiate Guidel<strong>in</strong>es Network (SIGN)<br />
(1997) Management of Patients with Stroke, Part<br />
III: Identification & Management of Dysphagia.<br />
www.sign.ac.uk/guidel<strong>in</strong>es/published/<strong>in</strong>dex.html -<br />
due for updat<strong>in</strong>g 2003.<br />
Resources<br />
Exeter Lip Sensor - source not known<br />
Introtalker - www.prentrom.com<br />
Makaton Vocabulary Development Project -<br />
www.makaton.org<br />
ORAC -<br />
www.lancs.ac.uk/depts/mardis/products/orac.html<br />
Postscript<br />
Hav<strong>in</strong>g experienced a life filled with<br />
many challenges and achievements,<br />
Robert died <strong>in</strong> February this year, a<br />
month after his 83rd birthday. I will<br />
remember his gentle nature, hearty<br />
laugh and his delight at be<strong>in</strong>g reunited<br />
with his family <strong>in</strong> his later years.<br />
Reflections<br />
• Do we see time s<strong>in</strong>ce onset as a<br />
potential advantage for therapy?<br />
• Do we recognise that complex<br />
causes need complex solutions?<br />
• Do we ensure access to<br />
professional support?
Half as likely to go to<br />
university, half as likely<br />
to get qualifications,<br />
half as likely to get a job -<br />
Disability and stigma:<br />
the Disability Rights<br />
Commission campaign<br />
asks, is a disabled person<br />
only half a person? Sarah<br />
Earle suggests a ‘cure and<br />
care’ approach can<br />
<strong>in</strong>advertently<br />
contribute to the process<br />
of disablement so <strong>in</strong> this,<br />
the third of four<br />
sociological<br />
perspectives<br />
on <strong>in</strong>equality,<br />
she explores<br />
how we can<br />
break down<br />
barriers and<br />
at the same<br />
time play an<br />
important role<br />
<strong>in</strong> treatment<br />
and<br />
rehabilitation.<br />
Read this<br />
if you want to understand more about<br />
• disability theories<br />
• barriers <strong>in</strong> society<br />
• enabl<strong>in</strong>g clients<br />
Figure 1 International Classification of<br />
Impairments, Disabilities and Handicaps (World<br />
Health Organisation)<br />
Impairment<br />
any loss or abnormality of<br />
psychological, physiological or<br />
anatomical structure of function;<br />
Disability<br />
any restriction or lack (result<strong>in</strong>g<br />
from an impairment) of ability to<br />
perform an activity <strong>in</strong> the manner<br />
or with<strong>in</strong> the range considered<br />
normal for a human be<strong>in</strong>g;<br />
Handicap<br />
a disadvantage for a given<br />
<strong>in</strong>dividual, result<strong>in</strong>g from an<br />
impairment or disability, that<br />
limits or prevents the fulfilment of<br />
a role that is normal (depend<strong>in</strong>g<br />
on age, sex and social and cultural<br />
factors) for that <strong>in</strong>dividual.<br />
Source: Wood (1980, p.29)<br />
Figure 2 Def<strong>in</strong>itions of disability: th<strong>in</strong>k<strong>in</strong>g<br />
po<strong>in</strong>ts<br />
• to what extent is the World<br />
Health Organisation def<strong>in</strong>ition<br />
of disability helpful to speech<br />
and language therapists?<br />
• are speech and language<br />
therapy clients ‘disabled’?<br />
• do you, and your clients, f<strong>in</strong>d<br />
the label of ‘disability’ a helpful<br />
one?<br />
Def<strong>in</strong>itions and understand<strong>in</strong>gs of disability<br />
have changed radically over time.<br />
Traditionally, disability was perceived as<br />
the tragic problem of unfortunate <strong>in</strong>dividuals<br />
whereas now disability is often seen as a<br />
form of social oppression and social exclusion<br />
(Oliver & Barnes, 1998). But what exactly do we<br />
mean when we use the term, ‘disability’?<br />
In 1980 the World Health Organisation published<br />
the International Classification of Impairment,<br />
Disability and Handicap. This classification adopts<br />
a three-fold typology, outl<strong>in</strong>ed <strong>in</strong><br />
figure 1.<br />
Although the <strong>in</strong>ternational<br />
classification is commonly<br />
regarded as comprehensive and<br />
is widely used across the world, it<br />
is not unproblematic. Firstly, the<br />
typology assumes the existence<br />
of psychological and physical<br />
‘normality’ as well as the ability<br />
to measure and def<strong>in</strong>e it.<br />
However sociologists are critical<br />
of this, argu<strong>in</strong>g that normality is,<br />
<strong>in</strong> fact, very difficult to def<strong>in</strong>e<br />
and is often dependent on a<br />
range of situational, temporal and<br />
cultural factors; that is, what might<br />
be regarded as ‘normal’ <strong>in</strong> one<br />
time and place may be regarded<br />
as ‘abnormal’ <strong>in</strong> another. Secondly,<br />
implicit with<strong>in</strong> the typology is a<br />
causal relationship between<br />
‘impairment’ and ‘handicap’.<br />
Thus, people with impairments<br />
become objects of <strong>in</strong>tervention,<br />
therapy and rehabilitation <strong>in</strong> the<br />
quest for ‘normalcy’. However, as<br />
Oliver & Barnes have contended,<br />
although <strong>in</strong>tervention and rehabilitation<br />
are sometimes appropriate,<br />
‘it is <strong>in</strong>creas<strong>in</strong>gly argued<br />
by a grow<strong>in</strong>g number of disabled<br />
people that it is quite <strong>in</strong>appropriate<br />
to treat disability’ (1998, p.15).<br />
Figure 2 highlights some po<strong>in</strong>ts to consider with<br />
respect to def<strong>in</strong>itions of disability.<br />
Disability theorists have been critical of the<br />
World Health Organisation classification which<br />
has been described as extremely ‘<strong>in</strong>dividualistic’,<br />
and a new def<strong>in</strong>ition, a social model of disability,<br />
has emerged (Oliver, 1983). A social model of disability<br />
rejects the causal relationship between<br />
impairment and handicap, argu<strong>in</strong>g that it is not<br />
<strong>in</strong>equality series (�)<br />
an unequal life<br />
impairment per se which is disabl<strong>in</strong>g, but the<br />
environment <strong>in</strong> which an <strong>in</strong>dividual f<strong>in</strong>ds him or<br />
herself. A social model also seeks to move away<br />
from a medical model of disability which focuses<br />
on the ‘cure and care’ (F<strong>in</strong>kelste<strong>in</strong>, 1993) of people<br />
with impairments. The Union of the Physically<br />
Impaired Aga<strong>in</strong>st Segregation thus describes disability<br />
as, ‘the disadvantage or restriction caused<br />
by a contemporary social organisation which<br />
takes no or little account of people who have<br />
physical impairments and thus excludes them<br />
from the ma<strong>in</strong>stream of<br />
social activities’ (1976, p.14).<br />
More recently, the 1995<br />
Disability Discrim<strong>in</strong>ation Act<br />
has def<strong>in</strong>ed a disabled person<br />
as somebody who, ‘has a<br />
physical or mental impairment<br />
which has a substantial<br />
and long-term adverse<br />
effect on his ability to carry<br />
out normal day-to-day<br />
activities’.<br />
It is difficult to establish a<br />
precise demography of disability<br />
and <strong>in</strong>equality <strong>in</strong><br />
normality is,<br />
<strong>in</strong> fact, very<br />
difficult to<br />
def<strong>in</strong>e and<br />
is often<br />
dependent on<br />
a range of<br />
situational,<br />
temporal and<br />
cultural factors<br />
Brita<strong>in</strong>, particularly given the difficulties with<br />
def<strong>in</strong><strong>in</strong>g ‘disability’ and the fact that def<strong>in</strong>itions<br />
have changed over time. Thus, any attempt to<br />
quantify the numbers of disabled people must be<br />
treated with caution. However, <strong>in</strong> 1999, the<br />
Disability Rights Task Force suggested that<br />
approximately 8.5 million people <strong>in</strong> Brita<strong>in</strong> came<br />
under the def<strong>in</strong>ition of disability provided by the<br />
Disability Discrim<strong>in</strong>ation Act (1995). Recent figures<br />
<strong>in</strong>dicate that one <strong>in</strong> five of all people of<br />
work<strong>in</strong>g age are disabled and that 3.7 million of<br />
these are men and 3.4 million are women (Smith<br />
& Tworney, 2002).<br />
Social oppression<br />
Theorists argue that disability is a form of social<br />
oppression and that disabled people experience<br />
considerable <strong>in</strong>equality <strong>in</strong> all areas of social life,<br />
<strong>in</strong>clud<strong>in</strong>g: education, health care, employment,<br />
hous<strong>in</strong>g, and transport (Barnes et al, 1999). For<br />
example, whilst 81 per cent of non-disabled people<br />
of work<strong>in</strong>g age are <strong>in</strong> employment, this<br />
applies to only 48 per cent of disabled people<br />
(Smith & Tworney, 2002). Furthermore, 50 per<br />
cent of disabled people who are not <strong>in</strong> work<br />
would like to be but are unable to f<strong>in</strong>d suitable<br />
employment. Research also shows that disabled<br />
people <strong>in</strong> work are more likely to be <strong>in</strong> manual<br />
SPEECH & LANGUAGE THERAPY IN PRACTICE SUMMER 2003 ��<br />
�
<strong>in</strong>equality series (�)<br />
Figure 3 Disability and <strong>in</strong>equality:<br />
th<strong>in</strong>k<strong>in</strong>g po<strong>in</strong>ts<br />
• <strong>in</strong> what ways might the<br />
<strong>in</strong>equalities experienced<br />
by disabled people<br />
<strong>in</strong>fluence the relationship<br />
between client and<br />
therapist?<br />
• how might stigma affect<br />
your clients?<br />
• how relevant is courtesy<br />
stigma to the role of the<br />
therapist?<br />
Figure 4 Implications for speech and<br />
language therapists<br />
• how can therapists avoid<br />
contribut<strong>in</strong>g to the<br />
process of disablement?<br />
• do you make moral<br />
judgements about your<br />
clients based on their<br />
impairment?<br />
• is it always appropriate to<br />
treat disability?<br />
• how far can therapists<br />
contribute to the removal<br />
of disabl<strong>in</strong>g barriers<br />
with<strong>in</strong> society?<br />
Reflections<br />
• Do I recognise that the<br />
word ‘normal’ can<br />
mean different th<strong>in</strong>gs<br />
to different people at<br />
different times?<br />
• Do I structure therapy<br />
to facilitate <strong>in</strong>clusion<br />
<strong>in</strong> the ma<strong>in</strong>stream of<br />
social activities?<br />
• Do I <strong>in</strong>volve clients as<br />
advisors when<br />
develop<strong>in</strong>g<br />
departmental policy?<br />
��<br />
�<br />
occupations and have lower than average earn<strong>in</strong>gs. Indeed, 50<br />
per cent of all disabled people are liv<strong>in</strong>g <strong>in</strong> poverty, affect<strong>in</strong>g a<br />
substantial number of children either directly or <strong>in</strong>directly<br />
(Burchardt, 2000). Evidence also suggests that there is <strong>in</strong>equality<br />
<strong>in</strong> education at all levels and that disabled people are more<br />
likely to have no qualifications than non-disabled people<br />
(Disability Rights Task Force, 1999). They are also more likely<br />
to live <strong>in</strong> poorer hous<strong>in</strong>g and have less than adequate access<br />
to transport and leisure facilities (Bagilhole, 1997).<br />
For disability theorists, <strong>in</strong>equalities are produced by the<br />
‘disabl<strong>in</strong>g barriers’ with<strong>in</strong> contemporary societies which prevent<br />
or h<strong>in</strong>der disabled people from full participation with<strong>in</strong><br />
society. Bowe (1978) has suggested six pr<strong>in</strong>cipal barriers:<br />
architectural, attitud<strong>in</strong>al, educational, occupational, legal<br />
and personal. Sociologists would argue that these barriers<br />
are both structural and material, as well as cultural.<br />
Sociologists also argue that disabled people experience<br />
‘stigma’, which is a powerful discredit<strong>in</strong>g label that can<br />
change and ‘spoil’ the way <strong>in</strong> which the <strong>in</strong>dividual is perceived.<br />
This idea was proposed by the sociologist Erv<strong>in</strong>g<br />
Goffman (1963), who argued that there are two types of<br />
stigmatis<strong>in</strong>g condition. Firstly, discredit<strong>in</strong>g conditions which<br />
are readily obvious to others, for example; eczema, psoriasis,<br />
and stammer<strong>in</strong>g. Secondly, discreditable conditions, those<br />
that are usually not visible to others, or can be easily concealed,<br />
for example epilepsy, HIV or depression. Goffman also argued<br />
that a person’s condition can become their ‘master-status’; that<br />
is, whatever else he or she might be or accomplish, the condition<br />
is the first th<strong>in</strong>g that other people see. For example,<br />
<strong>in</strong>terviews with disabled women have revealed that general<br />
practitioners often (wrongly) attribute health problems to<br />
the <strong>in</strong>dividual’s impairment (Begum, 1996).<br />
It is also worth consider<strong>in</strong>g here the concept of ‘courtesy<br />
stigma’, which has been def<strong>in</strong>ed as a ‘tendency for stigma to<br />
spread from the stigmatised <strong>in</strong>dividual to his close connections...’<br />
(Goffman, 1963, p.30). There is evidence, for example,<br />
that the family and carers of those with Alzheimer’s disease<br />
often experience considerable embarrassment and<br />
shame (MacRae, 1999). Hence, it is not just disabled people<br />
themselves who experience <strong>in</strong>equality - evidence suggests<br />
that it can affect the life chances of an entire family (Barnes<br />
et al, 1999). Figure 3 has th<strong>in</strong>k<strong>in</strong>g po<strong>in</strong>ts on disability and<br />
<strong>in</strong>equality.<br />
Accessible <strong>in</strong>formation<br />
What then are the implications of disability politics for<br />
speech and language therapists? It is clear that the organisation<br />
of contemporary society plays an important role <strong>in</strong> creat<strong>in</strong>g<br />
and susta<strong>in</strong><strong>in</strong>g barriers which prevent disabled people<br />
from participat<strong>in</strong>g fully with<strong>in</strong> the social and economic life<br />
of their communities. The Disability Discrim<strong>in</strong>ation Act<br />
(1995) goes some way towards the eradication of disabl<strong>in</strong>g<br />
environments, but it has been criticised for draw<strong>in</strong>g more on<br />
an <strong>in</strong>dividualistic, rather than a social, model of disability<br />
(Fawcett, 2000). <strong>Speech</strong> and language therapists are often<br />
<strong>in</strong>volved <strong>in</strong> work<strong>in</strong>g with clients and their families to ameliorate<br />
the consequences of this; examples of good practice<br />
might <strong>in</strong>clude the provision of accessible <strong>in</strong>formation for disabled<br />
clients, parents and relevant others, and the <strong>in</strong>volvement<br />
of disabled people as advisors at all stages of policy<br />
development and review with<strong>in</strong> cl<strong>in</strong>ical practice<br />
Some disability theorists, however, have argued that the<br />
therapies themselves contribute to the process of disablement.<br />
For example:<br />
Rehabilitation can be seen as a major <strong>in</strong>strument of bodily<br />
rationalisation. Disguised as ‘scientific’ and operat<strong>in</strong>g under<br />
the banner of biomedic<strong>in</strong>e, rehabilitation is a powerful<br />
agent <strong>in</strong> the ratification of particular types of<br />
SPEECH & LANGUAGE THERAPY IN PRACTICE SUMMER 2003<br />
bodies...Common to most rehabilitation work, however, is<br />
a set of moral ideas about what bodies should be like.<br />
(Seymour, 1998, p.20)<br />
Others argue that, whilst it is important to recognise that<br />
disability is a form of social oppression, it is also important to<br />
‘br<strong>in</strong>g back impairment’, and recognise the significance of<br />
this for <strong>in</strong>dividuals:<br />
The experience of impairment is not always irrelevant, neutral<br />
or positive... How can it be when pa<strong>in</strong>, fatigue, depression<br />
and chronic illness are constant facts of life for so<br />
many of us? ... for many disabled people personal struggle<br />
related to impairment will rema<strong>in</strong> even when disabl<strong>in</strong>g<br />
barriers no longer exist.<br />
Crow (1996, p.58)<br />
This implies that although a ‘cure and care’ approach can<br />
be disabl<strong>in</strong>g, there is a role for treatment and rehabilitation<br />
<strong>in</strong> which speech and language therapists can play an important<br />
part (figure 4).<br />
Dr Sarah Earle is Senior Lecturer <strong>in</strong> Health Studies at<br />
University College Northampton. Address for correspondence:<br />
Centre for Healthcare Education, Boughton Green<br />
Road, Northampton NN2 7AL, tel. 01604 735500, e-mail<br />
sarah.earle@northampton.ac.uk.<br />
References<br />
Bagilhole, B. (1997) Equal Opportunities and Social Policy.<br />
London: Longman.<br />
Barnes, C., Mercer, G. & Shakespeare T. (1999) Explor<strong>in</strong>g<br />
Disability: A Sociological Introduction. Cambridge: Polity.<br />
Begum, N. (1996) General Practitioner’s Role <strong>in</strong> Shap<strong>in</strong>g<br />
Disabled Women’s Lives. In: C. Barnes & G. Mercer (eds)<br />
Explor<strong>in</strong>g the Divide: Illness and Disability. Leeds: The<br />
Disability Press.<br />
Bowe, F. (1978) Handicapp<strong>in</strong>g America. New York: Harper &<br />
Rowe.<br />
Burchardt, T. (2000) Endur<strong>in</strong>g economic exclusion: disabled<br />
people, <strong>in</strong>come and work. London: YPS.<br />
Crow, L. (1996) Includ<strong>in</strong>g All of Our Lives: renew<strong>in</strong>g the social<br />
model of disability. In: C. Barnes & G. Mercer (eds) Explor<strong>in</strong>g<br />
the Divide: Illness and Disability. Leeds: The Disability Press.<br />
Disability Rights Task Force (1999) From Exclusion to<br />
Inclusion: F<strong>in</strong>al Report of the Disability Rights Task Force.<br />
[available from: http://www.disability.gov.uk].<br />
Fawcett, B. (2000) Fem<strong>in</strong>ist Perspectives on Disability.<br />
Harlow: Pearson Education.<br />
F<strong>in</strong>kelste<strong>in</strong>, V. (1993) Disability: An Adm<strong>in</strong>istrative Challenge.<br />
In: M. Oliver (ed.) Social Work: Disabled People and Disabl<strong>in</strong>g<br />
Environments, Research Highlights <strong>in</strong> Social Work 2. London:<br />
Jessica K<strong>in</strong>gsley.<br />
Goffman, E. (1963) Stigma: Notes on the management of a<br />
spoiled identity. Englewood Cliffs, NJ: Prentice Hall.<br />
MacRae, H. (1999) Manag<strong>in</strong>g courtesy stigma: The case of<br />
Alzheimer’s Disease. Sociology of Health & Illness 21 (1) 54-<br />
70.<br />
Oliver, M. (1983) Social Work with Disabled People.<br />
Bas<strong>in</strong>gstoke: Macmillan.<br />
Oliver, M. & Barnes, C. (1998) Disabled People and Social<br />
Policy: From Exclusion to Inclusion. London: Longman.<br />
Seymour, W. (1998) Remak<strong>in</strong>g the Body: Rehabilitation and<br />
Change. London: Routledge.<br />
Smith, A. & Tworney, B. (2002) Labour market experiences of<br />
people with disabilities. Labour Market Trends 110 (8)<br />
London: ONS.<br />
UPIAS (1976) Fundamental Pr<strong>in</strong>ciples of Disability. London:<br />
Union of the Physically Impaired Aga<strong>in</strong>st Segregation.<br />
Wood, P. (1980) International Classification of Impairments,<br />
Disabilities and Handicaps. Geneva, WHO.
PRESCHOOL LANGUAGE<br />
Tyler, A.A., Lewis, K.E., Haskill, A. & Tolbert, L.C.<br />
(2002) Efficacy and cross-doma<strong>in</strong> effects of a morphosyntax<br />
and a phonology <strong>in</strong>tervention. <strong>Lang</strong><br />
<strong>Speech</strong> Hear Serv Schools 33 (1) 52-66.<br />
Purpose: The purpose of this study was threefold: (a) to<br />
determ<strong>in</strong>e the efficacy of a morphosyntax and phonology<br />
<strong>in</strong>tervention aga<strong>in</strong>st a no-treatment control group, (b) to<br />
assess the effects of those <strong>in</strong>terventions on the non-targeted<br />
doma<strong>in</strong> and (c) to evaluate sequence effects when<br />
children receive both <strong>in</strong>terventions. Method: Twenty<br />
preschoolers with impairments <strong>in</strong> both morphosyntax and<br />
phonology were assigned randomly to an <strong>in</strong>tervention of<br />
two 12-week blocks beg<strong>in</strong>n<strong>in</strong>g with either a block of<br />
phonology first (n = 10) or a block of morphosyntax first<br />
(n = 10). Data were collected at pretreatment, after the<br />
first <strong>in</strong>tervention block, and post-treatment. For a control<br />
group of 7 children, data were collected at the beg<strong>in</strong>n<strong>in</strong>g<br />
and end of a time period equivalent to one <strong>in</strong>tervention<br />
block. Changes <strong>in</strong> a f<strong>in</strong>ite morpheme composite<br />
and target/generalization phoneme composite were<br />
assessed. Results: In comparison to the control group<br />
both <strong>in</strong>terventions were effective at a statistically significant<br />
level <strong>in</strong> facilitat<strong>in</strong>g improvement <strong>in</strong> the target<br />
doma<strong>in</strong> after 12 weeks. The morphosyntax <strong>in</strong>tervention<br />
led to cross-doma<strong>in</strong> change <strong>in</strong> phonology that was similar<br />
to that achieved by the phonology <strong>in</strong>tervention. The<br />
morphosyntax first sequence also led to slightly better<br />
overall morphosyntactic performance. Cl<strong>in</strong>ical<br />
Implications: Cl<strong>in</strong>ically, results suggest target<strong>in</strong>g morphosyntax<br />
first, followed by phonology, if us<strong>in</strong>g a block<br />
<strong>in</strong>tervention sequence for children with concomitant<br />
morphosyntactic and phonological impairments.<br />
PROFOUND DISABILITY<br />
Craig, A., Moses, P., Tran, Y., McIsaac, P. & Kirkup, L.<br />
(2002) The effectiveness of a hands-free environmental<br />
control system for the profoundly disabled. Arch<br />
Phys Med Rehabil 83 (10) 1455-8.<br />
The effectiveness of a hands-free environmental control<br />
system (ECS) that allows profoundly disabled persons to<br />
activate and control electric devices <strong>in</strong> their home by<br />
us<strong>in</strong>g consciously controlled changes <strong>in</strong> their bra<strong>in</strong> signals<br />
was evaluated by means of a cohort study with field trial<br />
test<strong>in</strong>g of the ECS <strong>in</strong> participant’s homes. Ten profoundly<br />
disabled persons (mean age, 42.9 y), all of whom had<br />
very limited movement from the neck downward. Six<br />
had sp<strong>in</strong>al cord <strong>in</strong>jury with lesions rang<strong>in</strong>g from C2 to<br />
C5-6. The other 4 had profound disability (1 each from<br />
polio, sp<strong>in</strong>al muscular atrophy, multiple sclerosis, cerebral<br />
palsy). The participants performed tasks on each of<br />
3 test occasions. The tasks consisted of turn<strong>in</strong>g a television<br />
on at the beg<strong>in</strong>n<strong>in</strong>g of the trial, chang<strong>in</strong>g channels<br />
(up, down), chang<strong>in</strong>g volume, and turn<strong>in</strong>g it off at the<br />
conclusion of each trial. The time taken to select the<br />
correct option and number of errors <strong>in</strong> select<strong>in</strong>g the correct<br />
option were measured. Measures were taken for<br />
each trial, so that any improvement <strong>in</strong> switch<strong>in</strong>g could be<br />
detected. All the participants were able to use the ECS<br />
effectively to operate their television sets. Select<strong>in</strong>g a correct<br />
option took about 30 seconds (with most of this time<br />
attributed to mach<strong>in</strong>e cycl<strong>in</strong>g time), with an error rate of<br />
1.8 per 5 options selected. The time taken to operate the<br />
ECS reduced slightly over the 3 trials and selection errors<br />
reduced to less than one error per 5 options ( 62<br />
years, and then age-matched with the controls, the likelihood of <strong>in</strong>fection<br />
with the H. pylori organism was greater <strong>in</strong> both the experimental middle<br />
group, and <strong>in</strong> the middle group when comb<strong>in</strong>ed with the elder group, than<br />
<strong>in</strong> the matched controls, and this difference demonstrated a trend<br />
approach<strong>in</strong>g statistical significance. This f<strong>in</strong>d<strong>in</strong>g is discussed <strong>in</strong> the light of<br />
other studies on HP and on gastroesophageal reflex (GER).<br />
BRAIN INJURY<br />
Duff, M.C., Proctor, A. & Haley, K. (2002) Mild traumatic bra<strong>in</strong><br />
<strong>in</strong>jury (MTBI): assessment and treatment procedures used by<br />
speech-language pathologists (SLPs). Bra<strong>in</strong> Inj 16 (9) 773-87.<br />
The purposes of this study were to identify how <strong>in</strong>dividuals with MTBI are<br />
assessed, to determ<strong>in</strong>e the referral process to and from speech-language<br />
pathologists (SLPs), to describe the frequency, structure, and nature of<br />
treatment, to identify how <strong>in</strong>dividuals with MTBI and their families are<br />
educated about the <strong>in</strong>jury and counselled, and to assess current followup<br />
procedures. One-hundred and forty-three hospital and rehabilitation<br />
centre based SLPs from North Carol<strong>in</strong>a and Ill<strong>in</strong>ois responded to a survey<br />
developed to address these areas of <strong>in</strong>terest. F<strong>in</strong>d<strong>in</strong>gs <strong>in</strong>dicated current diagnostic<br />
tools used by SLPs lack the sensitivity to detect the subtle cognitive<br />
communication deficits associated with MTBI, referral and follow-up procedures<br />
are not sufficiently implemented <strong>in</strong> facilities to meet the grow<strong>in</strong>g needs<br />
of <strong>in</strong>dividuals with MTBI, and SLPs would benefit from <strong>in</strong>creased tra<strong>in</strong><strong>in</strong>g<br />
regard<strong>in</strong>g the management of <strong>in</strong>dividuals with MTBI <strong>in</strong>clud<strong>in</strong>g educat<strong>in</strong>g and<br />
counsell<strong>in</strong>g patients and their families.<br />
further read<strong>in</strong>g<br />
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Ann Auchterlonie is Director of<br />
Afasic Scotland. She writes <strong>in</strong> a<br />
personal capacity <strong>in</strong>formed by<br />
her experience with Afasic <strong>in</strong><br />
Scotland. The views stated here<br />
are not necessarily those of<br />
Afasic and do not reflect the UK<br />
situation.<br />
Please note that Afasic Scotland<br />
has moved to:<br />
Unit 1 Prospect III, Gem<strong>in</strong>i Crescent,<br />
Dundee Technology Park, Dundee DD2<br />
1TY tel: 01382 561891 Fax: 01382<br />
568391 email: afasicscot@aol.com<br />
Carole E. Higg<strong>in</strong>bottom was<br />
until recently speech and<br />
language therapy service<br />
manager at The Robert Ogden<br />
School <strong>in</strong> South Yorkshire. She is<br />
now a freelance consultant,<br />
currently work<strong>in</strong>g for Barnsley<br />
Local Education Authority at a<br />
strategic level support<strong>in</strong>g their<br />
resource provision for children<br />
with autism<br />
(e-mail<br />
carole.higg<strong>in</strong>bottom@btopenworld.com).<br />
Cecilia Yardley is Director of<br />
Services with Speakability,<br />
www.speakability.org.uk.<br />
Read this<br />
if you want<br />
•to focus on solutions not<br />
problems<br />
•clients to take more<br />
responsibility<br />
•your impact to cont<strong>in</strong>ue<br />
when therapy stops<br />
��<br />
cover story<br />
SPEECH & LANGUAGE THERAPY IN PRACTICE SUMMER 2003<br />
I put users <strong>in</strong> the<br />
driv<strong>in</strong>g seat<br />
Sooner or later� most learner drivers<br />
reach a po<strong>in</strong>t where they are ready to<br />
go off on their own� an exhilarat<strong>in</strong>g if slightly<br />
scary moment� When you th<strong>in</strong>k about it�<br />
speech and language therapists have a lot<br />
<strong>in</strong> common with driv<strong>in</strong>g <strong>in</strong>structors �<br />
patience� good communication skills�<br />
vision� know<strong>in</strong>g when to apply the brakes<br />
� but do we fully understand what it<br />
means to put our users <strong>in</strong> the driv<strong>in</strong>g seat?<br />
Here� three contributors who work for<br />
consumer groups* suggest why we should<br />
accelerate the process�<br />
* “���as they function largely outside of the healthcare system�<br />
consumer groups are <strong>in</strong> a position to see the bigger picture and<br />
to pick up on trends long before those work<strong>in</strong>g <strong>in</strong>side the system<br />
can perceive them� This is largely a result of consumer groups’<br />
efforts to construct a new k<strong>in</strong>d of science � one which uses a<br />
comb<strong>in</strong>ation of observation� anecdote� dialogue� compla<strong>in</strong>ts and<br />
human <strong>in</strong>put as well as the available scientific� sociological and<br />
psychological evidence � to reach its conclusions regard<strong>in</strong>g<br />
appropriate care� and to identify problems and opportunities<br />
for change�” (Thomas� P� (����) The midwife you have<br />
called knows you are wait<strong>in</strong>g��� AIMS Journal �� (�)� p��)<br />
Practical po<strong>in</strong>ts: putt<strong>in</strong>g users <strong>in</strong> the driv<strong>in</strong>g seat<br />
1. Improve the quality and specificity of <strong>in</strong>formation<br />
2. Agree outcomes that will have long-term impact<br />
3. Respond to a client’s chang<strong>in</strong>g needs<br />
4. Work out who all your users are, not just the end user<br />
5. Collaborate - and be seen to collaborate<br />
6. Connect with other service providers<br />
7. Help users to <strong>in</strong>spire and motivate others<br />
8. Use consumer group frameworks to assess your therapy provision<br />
9. Involve users at a policy (not necessarily executive) level<br />
10. Draw on user <strong>in</strong>volvement <strong>in</strong>itiatives beyond speech and language therapy
Afasic promotes the <strong>in</strong>terests of<br />
children and young people with<br />
speech and language impairments,<br />
works for their <strong>in</strong>clusion <strong>in</strong><br />
society and supports their parents and carers.<br />
A common question parents ask us is, “Where can I get private<br />
speech and language therapy?” It usually follows a compla<strong>in</strong>t that their<br />
child isn’t gett<strong>in</strong>g enough speech and language therapy, or that their<br />
speech and language therapist has gone off on maternity leave and<br />
hasn’t been replaced or, occasionally, that they have no choice <strong>in</strong> the<br />
therapist provided. Like Oliver Twist, parents want more - usually more<br />
of a good th<strong>in</strong>g. More therapists, more therapy, more one-to-one<br />
therapy, more therapists <strong>in</strong> secondary schools (are there ANY?) They<br />
also want better. Better understand<strong>in</strong>g of speech and language impairments<br />
by GPs and <strong>in</strong> schools, better evidence of teachers, therapists and<br />
educational psychologists work<strong>in</strong>g together, better <strong>in</strong>formation about<br />
the nature of their child’s difficulty and what the implications are,<br />
better <strong>in</strong>formation on the level of service their child is go<strong>in</strong>g to receive<br />
and what the <strong>in</strong>tervention is aim<strong>in</strong>g to achieve, and better service<br />
provision.<br />
Parents want more of what they see as a good th<strong>in</strong>g. But, before we<br />
decide to change drivers, we need to consider how that would make a<br />
good th<strong>in</strong>g better. We also need to establish just who’s driv<strong>in</strong>g the bus<br />
anyway.<br />
Much of Afasic’s work is done on behalf of children and young people<br />
for whom speech and language impairments have significant implications<br />
for their learn<strong>in</strong>g and potential educational achievement. In<br />
Scotland, many children have these needs recognised <strong>in</strong> a Record of<br />
Needs, opened by the Education Authority to support the plann<strong>in</strong>g of<br />
appropriate educational provision (note 1). In these cases, the local<br />
authority is responsible for the provision of speech and language<br />
therapy and fund<strong>in</strong>g is provided to enable the authority to secure<br />
therapy services. The authority can choose to buy these services from<br />
their local health trust, or a different one, to buy them from a private<br />
provider or to employ therapists. In practice, local authorities enter <strong>in</strong>to<br />
contracts with their local heath trusts - with vary<strong>in</strong>g degrees of success,<br />
if we measure the outcomes aga<strong>in</strong>st standards such as:<br />
• Child-centred provision of services<br />
• Collaborative work<strong>in</strong>g practice between therapists and teachers<br />
• Collaborative tra<strong>in</strong><strong>in</strong>g of teachers and therapists<br />
• Improved understand<strong>in</strong>g of specific language impairment <strong>in</strong> schools<br />
• Effective service provision<br />
• Accountability to parents, children and young people.<br />
Not long ago, a major debate centred round the “The Case of the<br />
Disappear<strong>in</strong>g £millions”, announced by a Government M<strong>in</strong>ister <strong>in</strong><br />
Scotland as additional fund<strong>in</strong>g for speech and language therapy <strong>in</strong><br />
schools. The “unhypothecated” funds were allocated to local authorities<br />
across Scotland with little impact on services. And, while central government<br />
and local authorities passed responsibility to the other and<br />
avoided direct accountability, raised expectations were dashed and children’s<br />
needs went unmet. Meanwhile, the allocation of health service<br />
resources to the provision of speech and language therapy for children<br />
whose needs are not recorded went unexam<strong>in</strong>ed and the level of<br />
resources actually allocated to speech and language therapy for children<br />
<strong>in</strong> school rema<strong>in</strong>s difficult to establish across Scotland.<br />
A different problem arises on a regular basis and is a common cause<br />
for compla<strong>in</strong>t: maternity leave. Have you noticed how many speech and<br />
language therapists are female? Have you calculated how many have<br />
maternity leave? Have you noticed how many maternity leave vacancies<br />
cover story<br />
From her position at the wheel of Afasic Scotland�<br />
Ann Auchterlonie takes a personal view of some of<br />
the obstacles we need to negotiate to br<strong>in</strong>g parents<br />
and young people with speech and language<br />
impairments on board our bus�<br />
All aboard!<br />
go unfilled? Have you considered what the impact of a six month break<br />
<strong>in</strong> therapy is for a child? Parents regularly ask who is responsible for the<br />
provision of speech and language therapy because they want to f<strong>in</strong>d<br />
out who is responsible for not fill<strong>in</strong>g the posts and susta<strong>in</strong><strong>in</strong>g the service<br />
identified as critical to meet<strong>in</strong>g their child’s special educational needs<br />
and, sometimes, they do not get straight answers. The authority is<br />
responsible for provision but the fill<strong>in</strong>g of the post is the responsibility<br />
of the health trust and, while the letters and telephone calls are<br />
exchanged, children’s needs go unmet.<br />
Occasionally, the issues are of effective provision at a local level - the quality<br />
of the <strong>in</strong>dividual service provided or the management of staff work<strong>in</strong>g<br />
<strong>in</strong> relatively isolated situations, or <strong>in</strong> schools. Resolv<strong>in</strong>g the problem can be<br />
difficult when rais<strong>in</strong>g it may be seen as a criticism of other managers,<br />
where <strong>in</strong>ter-professional relationships are not good, or alternative sources<br />
of supply are simply not available.<br />
The local authority is currently a user with the responsibilities of a<br />
provider without the powers. So, <strong>in</strong> the <strong>in</strong>terests of accountability and<br />
services for children <strong>in</strong> need, should I put the local authority <strong>in</strong> the<br />
driv<strong>in</strong>g seat and clarify both responsibility and accountability? And<br />
would that be enough?<br />
What about parents as co-drivers? In Scotland, parents have statutory<br />
responsibilities <strong>in</strong> the <strong>in</strong>terests of the child, for their education, health,<br />
development and welfare and to act as the child’s legal representative;<br />
and the right to take action to secure appropriate services for them.<br />
They are users.<br />
Afasic actively promotes partnership between parents and professionals,<br />
parents and local authorities and parents and health services.<br />
But is partnership enough?<br />
At present parents value speech and language therapy but have little<br />
understand<strong>in</strong>g of what it entails and who is responsible for provid<strong>in</strong>g it.<br />
Their ability to act <strong>in</strong> their child’s <strong>in</strong>terests is restricted. Increased participation<br />
by parents <strong>in</strong> the plann<strong>in</strong>g and monitor<strong>in</strong>g of service provision<br />
is an essential first step. A parallel step is to <strong>in</strong>volve parents <strong>in</strong> the ongo<strong>in</strong>g<br />
work with their child, help<strong>in</strong>g them understand the nature of their<br />
child’s difficulty, what support they can give and how the therapy provided<br />
can impact on their child’s learn<strong>in</strong>g. The Individual Education Plan<br />
can provide a framework for this where the therapist and the teacher<br />
are work<strong>in</strong>g collaboratively and <strong>in</strong>volv<strong>in</strong>g the parent, and the proposed<br />
Co-ord<strong>in</strong>ated Support Plan will make it essential (note 1).<br />
If it is the parents’ duty to act <strong>in</strong> the <strong>in</strong>terests of their child’s health,<br />
development and welfare, how can they fulfil that duty if they are not<br />
<strong>in</strong> a driv<strong>in</strong>g seat?<br />
Right to participation<br />
And what about children and young people themselves - are they just<br />
passengers? S<strong>in</strong>ce the UN Convention on the Rights of the Child spelt<br />
out children’s right to participation - and not to be passive recipients of<br />
services provided for them, good or bad - recognition of the importance<br />
of <strong>in</strong>volv<strong>in</strong>g children when decisions are made about them has been<br />
gradually develop<strong>in</strong>g.<br />
Children “of sufficient understand<strong>in</strong>g” have the right to consent to, or<br />
refuse, medical exam<strong>in</strong>ation or treatment. Their rights to be <strong>in</strong>volved <strong>in</strong><br />
decisions about their education or their personal life are now enshr<strong>in</strong>ed<br />
<strong>in</strong> legislation and embodied <strong>in</strong> many national policy documents. �<br />
SPEECH & LANGUAGE THERAPY IN PRACTICE SUMMER 2003 ��
��<br />
�<br />
Recently, Afasic Scotland undertook an analysis of the extent to which<br />
children and young people participated <strong>in</strong> the formal decision mak<strong>in</strong>g<br />
process <strong>in</strong>volv<strong>in</strong>g teachers, speech and language therapists, educational<br />
psychologists and parents <strong>in</strong> school (note 2). As the project progressed,<br />
we became aware of a vacuum at the heart of the documentation:<br />
amongst the rem<strong>in</strong>ders of children’s rights and the need to give due<br />
weight and pay due regard to their views, rarely does there appear any<br />
clear statement about why their participation is so important, or what<br />
end the effort to <strong>in</strong>volve children <strong>in</strong> the decision mak<strong>in</strong>g process is<br />
<strong>in</strong>tended to serve.<br />
Obviously, very early <strong>in</strong>tervention takes place because professionals<br />
and parents have recognised the need for therapy and work towards<br />
help<strong>in</strong>g the child, but successful therapy always depends on the child’s<br />
participation and the child’s will<strong>in</strong>gness to participate plays an <strong>in</strong>creas<strong>in</strong>gly<br />
important role <strong>in</strong> achiev<strong>in</strong>g successful outcomes as the child gets<br />
older.<br />
To be a user of speech and language therapy, children and young people<br />
need to move from be<strong>in</strong>g passive recipients to active participants.<br />
E<br />
cover story<br />
ach young person with autism<br />
is as unique as a f<strong>in</strong>gerpr<strong>in</strong>t<br />
and all are challenged by their<br />
autism <strong>in</strong> a different way. I<br />
work as a speech and language therapy service manager <strong>in</strong> The Robert<br />
Ogden School situated <strong>in</strong> South Yorkshire. The school is run by The<br />
National Autistic Society and provides education and care for 138 young<br />
people between the ages of 7 and 19 years. We are fortunate enough to<br />
have three full-time specialist speech and language therapists support<strong>in</strong>g<br />
both the educational and residential provision and work<strong>in</strong>g alongside<br />
these dedicated teams to provide <strong>in</strong>dividualised yet flexible programmes<br />
to m<strong>in</strong>imise the impact of autism on the young people’s lives<br />
and those of their families.<br />
When I was first asked to write this article, I immediately thought of my<br />
time <strong>in</strong> the NHS and panicked! Why wasn’t I, as the manager of a service<br />
for children and adolescents with autism, dish<strong>in</strong>g out questionnaires<br />
and audit forms to my service users? I couldn’t possibly be putt<strong>in</strong>g users<br />
<strong>in</strong> the driv<strong>in</strong>g seat if I didn’t have reams of paper and graphs to prove<br />
how effective and professional we are. Then I thought aga<strong>in</strong>. Who actually<br />
are the service users? Where do we make the biggest impact? How do<br />
we respond to the chang<strong>in</strong>g needs of the <strong>in</strong>dividuals that we work with<br />
on a daily basis? How do we know what they need? More importantly,<br />
how do they tell us what they need?<br />
It is difficult to say, really, who our service users are: the young people with<br />
autism; their parents or carers; the teachers; residential social workers;<br />
special support assistants; respite service staff; the taxi drivers? Each one<br />
can have a significant impact, for better or worse, on the lives of <strong>in</strong>dividuals<br />
with autism. Their <strong>in</strong>fluence should not be underestimated or<br />
undervalued. The person with autism is, of course, the end user of the<br />
service but the parents, carers and professionals accompany the child<br />
with autism on his or her life journey and therefore can and should access<br />
the support and expertise of the speech and language therapy service.<br />
Where do we make the biggest impact? The role of the speech and<br />
language therapist at The Robert Ogden School is to work as part of a<br />
multidiscipl<strong>in</strong>ary team <strong>in</strong> its broadest sense, sometimes lead<strong>in</strong>g sometimes<br />
follow<strong>in</strong>g, but always keep<strong>in</strong>g the needs of our special young people<br />
uppermost <strong>in</strong> both m<strong>in</strong>d and practice. The National Autistic Society has<br />
SPEECH & LANGUAGE THERAPY IN PRACTICE SUMMER 2003<br />
Simply gett<strong>in</strong>g older doesn’t achieve this. Active participation means<br />
be<strong>in</strong>g <strong>in</strong>formed, as far as possible, of the purpose of the therapy, encouraged<br />
to give their views and to be listened to, helped to understand<br />
what can be achieved through therapy and their own role <strong>in</strong> mak<strong>in</strong>g this<br />
happen, and consulted on agree<strong>in</strong>g and sett<strong>in</strong>g targets for outcomes<br />
which will have an impact on them long after therapy has ceased.<br />
First we have to enable children and young people to become users.<br />
But then, can we put these users <strong>in</strong> the driv<strong>in</strong>g seat or even <strong>in</strong> the back<br />
seat - help<strong>in</strong>g and direct<strong>in</strong>g the professional chauffeur to get them to<br />
where they need and want to be?<br />
Notes<br />
1. The Scottish Executive is currently plann<strong>in</strong>g changes to the legal<br />
framework for the provision of services for children with special educational<br />
needs, which would abolish the Record of Needs and replace it<br />
with a Co-ord<strong>in</strong>ated Support Plan.<br />
2. “Explor<strong>in</strong>g Participation”, Afasic Scotland (2002) is available from<br />
Afasic Scotland, tel: 01382 561891, price is £4 plus £1 p&p.<br />
The National Autistic Society encourages its<br />
therapists to focus on the chang<strong>in</strong>g needs of<br />
their young clients� free from the constra<strong>in</strong>ts of<br />
the NHS� Carole Higg<strong>in</strong>bottom assesses a Rolls<br />
Royce service�<br />
Pass<strong>in</strong>g the test<br />
developed a framework, SPELL, for understand<strong>in</strong>g and respond<strong>in</strong>g to<br />
the needs of children and adults with an autistic spectrum disorder across<br />
its range of services. This stands for Structure, Positive (approaches and<br />
<strong>in</strong>terventions), Empathy, Low arousal (approaches and environment) and<br />
L<strong>in</strong>ks (between the various components <strong>in</strong> a person’s life). As spells go,<br />
this one, if applied sensitively with knowledge and to <strong>in</strong>dividuals, can significantly<br />
improve the communication and flexibility of our client group.<br />
1) Structure<br />
Structure can and does change lives. I don’t want to seem to be teach<strong>in</strong>g<br />
my granny to suck eggs, but this may just simply be chang<strong>in</strong>g the<br />
physical structure of a room to us<strong>in</strong>g objects of reference and provid<strong>in</strong>g<br />
access to symbols, words or pictures to enable a child to understand and<br />
express himself.<br />
Mak<strong>in</strong>g a child’s life predictable and ordered will gradually improve<br />
understand<strong>in</strong>g, communication and behaviour. Modell<strong>in</strong>g practice and<br />
support<strong>in</strong>g a teacher or parent to set these systems up can be liberat<strong>in</strong>g<br />
for both child and adult.<br />
2) Positive (approaches and <strong>in</strong>terventions)<br />
Sometimes I th<strong>in</strong>k many of our children would scream, if they could,<br />
“Just tell me what to do!” We all need to know the rules of the game<br />
not what we are do<strong>in</strong>g wrong. The biggest impact can be made by the<br />
simplest of actions.<br />
3) Empathy<br />
Imag<strong>in</strong>e your worst holiday nightmare; stuck <strong>in</strong> the middle of deepest<br />
darkest Borneo; lost; don’t speak the language; don’t know the cultural<br />
taboos (like the advert with the guy with his bare feet on the table) no<br />
food, no dr<strong>in</strong>k; no money; horror of horrors no phone! Aagh! Blood<br />
pressure sky high, heart pound<strong>in</strong>g, adrenal<strong>in</strong> pump<strong>in</strong>g; that’s what I<br />
th<strong>in</strong>k autism must be like every day.
4) Low arousal<br />
This is the most challeng<strong>in</strong>g aspect for all who work with autism - look<strong>in</strong>g<br />
and feel<strong>in</strong>g the world with the eyes of autism. What you or I feel is<br />
calm<strong>in</strong>g may be wildly stimulat<strong>in</strong>g if you have autism.<br />
5) L<strong>in</strong>ks<br />
We all know how valuable it is to network at meet<strong>in</strong>gs and conferences.<br />
It’s vital that service providers connect. For the speech and language<br />
therapist work<strong>in</strong>g <strong>in</strong> my environment this can mean many th<strong>in</strong>gs.<br />
Attend<strong>in</strong>g each Annual Review can <strong>in</strong>fluence the other services provided<br />
for a family with autism by support<strong>in</strong>g the young person, parents and<br />
carers to communicate their needs to organisations like social services,<br />
Connexions (www.connexions.gov.uk) and Local Education Authorities.<br />
Aid<strong>in</strong>g <strong>in</strong> the sett<strong>in</strong>g of communication based yearly objectives can result<br />
<strong>in</strong> achievement. Work<strong>in</strong>g with dedicated residential staff to implement the<br />
requirements of the National Care Standards (www.carestandards.org.uk)<br />
<strong>in</strong> order to aid the young people to communicate about choices, likes<br />
and dislikes can result <strong>in</strong> major changes <strong>in</strong> a child’s daily activities.<br />
Work<strong>in</strong>g with highly professional education teams to enable access to<br />
the curriculum and to develop strategies can extend young people’s<br />
skills beyond what was <strong>in</strong>itially predicted. Each of these elements contributes<br />
to an understand<strong>in</strong>g of the chang<strong>in</strong>g needs of the young people<br />
who attend the Robert Ogden School.<br />
Privileged role<br />
The vitally important factor has to be, for the speech and language therapist<br />
at least, how do our service users tell us what they need? Parents, carers<br />
and teachers are usually very clear about their needs and the perceived<br />
needs of the young person. Work<strong>in</strong>g with youngsters with autism, it is<br />
often bl<strong>in</strong>d<strong>in</strong>gly obvious what they want but not often what they need.<br />
Like all of us, what we want may not be what’s good for us; choos<strong>in</strong>g<br />
between chocolate and fruit - no contest - even with <strong>in</strong>formed choice. It<br />
is the privileged role of the speech and language therapist to assess,<br />
How many people can you fit<br />
<strong>in</strong> a M<strong>in</strong>i? A m<strong>in</strong>d-numb<strong>in</strong>g<br />
n<strong>in</strong>eteen!* Of course, laden<br />
with so many <strong>in</strong>dividuals,<br />
driv<strong>in</strong>g is virtually impossible. And the same is true of organisations with<br />
many stakeholders, unless it is absolutely clear who is <strong>in</strong> charge of driv<strong>in</strong>g.<br />
At Speakability, we’re quite clear that people with aphasia should be <strong>in</strong><br />
the driv<strong>in</strong>g seat. This is a conscious change of direction for the organisation.<br />
For most of its twenty-four years, under its former name of Action for<br />
Dysphasic Adults, the charity essentially supported people with aphasia<br />
<strong>in</strong>directly. It provided materials and <strong>in</strong>formation about aphasia to<br />
speech and language therapists, and looked to therapists to take the<br />
lead on sett<strong>in</strong>g up and ma<strong>in</strong>ta<strong>in</strong><strong>in</strong>g the network of support groups.<br />
S<strong>in</strong>ce the charity’s relaunch <strong>in</strong> 2000, the Trustees and staff have been<br />
actively engaged <strong>in</strong> try<strong>in</strong>g to expand the opportunities for people with<br />
aphasia to voice their needs and <strong>in</strong>terests. The process starts at the top<br />
of the organisation. A third of Speakability’s trustees have aphasia. They<br />
are uniquely placed, <strong>in</strong> discussions about strategy, to draw on their<br />
experience of liv<strong>in</strong>g with the condition. And we are about to open up a<br />
further seat on the Board for a person with aphasia, who will be selected<br />
from candidates drawn from the Speakability Action Group, a body that<br />
comprises members of each support group <strong>in</strong> the country.<br />
People with aphasia are<br />
handed the keys by Speakability<br />
� along with tra<strong>in</strong><strong>in</strong>g� maps<br />
and navigational support�<br />
Cecilia Yardley reports�<br />
cover story<br />
observe, facilitate and communicate with the child and others to come<br />
to a consensus about the best ways to enable a child with autism to tell<br />
us what they need. We may not get it right first time but if we can persuade<br />
these very special children that visit<strong>in</strong>g our world, even for an<br />
<strong>in</strong>stant, is fun then I for one feel I’ve made a difference.<br />
As a service, do we put users <strong>in</strong> the driv<strong>in</strong>g seat? Do the wishes of our<br />
client group change the shape of our service? Do we listen? Yes, I th<strong>in</strong>k<br />
so. Maybe, as a service manager work<strong>in</strong>g for the National Autistic<br />
Society, I am <strong>in</strong> a very unique position. I am not pressurised by wait<strong>in</strong>g<br />
lists, targets for face-to-face contacts and the rest. I have the greatest<br />
respect for my colleagues <strong>in</strong> the NHS who respond professionally and<br />
sensitively to these pressures. I am allowed, perhaps even encouraged,<br />
by my masters to focus on the chang<strong>in</strong>g needs of my client group without<br />
recourse to number crunch<strong>in</strong>g. Maybe that’s why I left the NHS...<br />
The National Autistic Society (NAS) is the UK’s lead<strong>in</strong>g charity for people<br />
with autistic spectrum disorders and their families. In its 41st year, it cont<strong>in</strong>ues<br />
to spearhead national and <strong>in</strong>ternational <strong>in</strong>itiatives and provide a<br />
strong voice for autism. The Society provides a wide range of services to<br />
help people with autism and Asperger syndrome live their lives with as<br />
much <strong>in</strong>dependence as possible. The NAS has over 12,000 members whose<br />
vote at the General Meet<strong>in</strong>g ultimately controls the Society’s direction.<br />
The issues raised by NAS members and other <strong>in</strong>terested <strong>in</strong>dividuals have a<br />
major impact on our policy and campaign<strong>in</strong>g work. The NAS Policy &<br />
Campaigns team produces a report once a year on a topic relevant to<br />
autism (for example, diagnosis, <strong>in</strong>clusion), for which the views and experiences<br />
of our members and other <strong>in</strong>terested <strong>in</strong>dividuals are surveyed. The<br />
NAS Regional Development teams <strong>in</strong>form the policy and senior management<br />
teams of the issues raised by members locally - whether through NAS<br />
branches, schools or social groups. The policy team raises these <strong>in</strong> meet<strong>in</strong>gs<br />
with government officials (such as those at the Department for Education<br />
& Skills, the Department of Health and other agencies) and groups with<br />
which the organisation works.<br />
www.nas.org.uk<br />
Where do you want to go?<br />
It is important to dist<strong>in</strong>guish, however, between the policy-mak<strong>in</strong>g role<br />
of trustees and the executive role of staff and volunteers. When we talk<br />
at Speakability about people with aphasia ‘be<strong>in</strong>g <strong>in</strong> the driv<strong>in</strong>g seat’, we<br />
mean lead<strong>in</strong>g the policy work of the charity. The unpalatable reality -<br />
which both Speakability staff and our client group wrestle with - is that<br />
people with aphasia may no longer be able, unsupported, to undertake<br />
‘executive roles’ because of their difficulties with read<strong>in</strong>g, writ<strong>in</strong>g,<br />
speak<strong>in</strong>g and memory.<br />
Experience of work<strong>in</strong>g over a six-month period with someone with<br />
aphasia who made presentations to groups about aphasia and<br />
Speakability, highlighted that the commitment of support from the<br />
organisation may need to be very <strong>in</strong>tensive to make that sort of role<br />
work. In a medium-sized organisation, where staff are already fairly<br />
stretched, that is not a commitment to take on lightly.<br />
Inspired and motivated<br />
However, people with aphasia who lack confidence <strong>in</strong> their own ability<br />
to communicate can be very <strong>in</strong>spired and motivated by hear<strong>in</strong>g one of<br />
�<br />
SPEECH & LANGUAGE THERAPY IN PRACTICE SUMMER 2003 ��
��<br />
cover story<br />
�their peers both describ<strong>in</strong>g and demonstrat<strong>in</strong>g successful communication.<br />
For this reason, fully aware of the support issues, we are <strong>in</strong> the process<br />
of sett<strong>in</strong>g up a post, on a limited-hours basis, to engage someone with<br />
aphasia to take the lead on promot<strong>in</strong>g our ‘Speakers Panel’. Speakers<br />
recruited to the Panel will receive tra<strong>in</strong><strong>in</strong>g <strong>in</strong> how to make presentations<br />
to community groups and statutory bodies. Some of the tra<strong>in</strong><strong>in</strong>g will<br />
deal with effective communication strategies, but it will also cover the<br />
k<strong>in</strong>d of ‘user <strong>in</strong>volvement’ issues addressed by projects like<br />
CancerVOICES (www.cancerl<strong>in</strong>k.org/cancervoices) and the Expert Patient<br />
(www.ohn.gov.uk/ohn/people/expert.htm) <strong>in</strong>itiatives. To take the pressure<br />
off aphasic spokespeople, Speakability is shoot<strong>in</strong>g a ten m<strong>in</strong>ute<br />
video that <strong>in</strong>troduces the work of the organisation.<br />
So, Speakability puts people with aphasia <strong>in</strong> the driv<strong>in</strong>g seat through<br />
<strong>in</strong>volvement as trustees and spokespeople, and also Work<strong>in</strong>g Party and<br />
support group membership. Speakability’s Work<strong>in</strong>g Parties are typically<br />
six or eight strong. They meet several times to help develop a particular<br />
product or plan an event. The ‘Patient’s Passport’ Work<strong>in</strong>g Party, for<br />
example, has provided <strong>in</strong>itial ideas and feedback on prototypes of a personalised<br />
healthcare communication book that is now available for<br />
external consultation with a wide range of organisations outside the<br />
field of aphasia. Speakability recognises the value of specialist knowledge<br />
with<strong>in</strong> the Work<strong>in</strong>g Party. For example, the Patient’s Passport<br />
group <strong>in</strong>cluded a GP who now has aphasia.<br />
Speakability staff have an agreement with work<strong>in</strong>g party members<br />
that they will be faithful to the ideas suggested, but will ‘repackage’<br />
them, where necessary, to make the language accessible and appropriate<br />
to the audience. This is vital when the charity is work<strong>in</strong>g with policy<br />
makers. On one occasion, Action for Dysphasic Adults was <strong>in</strong>volved <strong>in</strong> a<br />
government consultation and delivered a response written <strong>in</strong> aphasic<br />
language that was submitted late because of the difficulty <strong>in</strong> meet<strong>in</strong>g<br />
the consultation timeframe. In this <strong>in</strong>stance, the response missed the<br />
mark.<br />
Act<strong>in</strong>g as a bridge between people with aphasia and policy makers,<br />
Speakability must f<strong>in</strong>d ways of respond<strong>in</strong>g with<strong>in</strong> a very short timeframe<br />
that it often cannot control. So, to reach the dest<strong>in</strong>ation set by people<br />
with aphasia, it may sometimes appear that Speakability staff are driv<strong>in</strong>g.<br />
Perhaps the analogy of competitive bl<strong>in</strong>d skiers is appropriate - the bl<strong>in</strong>d skier<br />
is tak<strong>in</strong>g the lead but the assistant is enabl<strong>in</strong>g him to negotiate the course.<br />
Return autonomy<br />
There are other ways <strong>in</strong> which we try to return autonomy to people with<br />
aphasia. Most of Speakability’s support groups are run by people with<br />
aphasia, often with the support of non-aphasic volunteers, usually the<br />
partner of an aphasic member. In the words of one person with aphasia,<br />
“The group meets for confidence build<strong>in</strong>g, conversation and company.”<br />
Speakability’s ethos is very much that carers must not take over and<br />
monopolise the safe place to speak that the groups provide. However, of<br />
course, carers of people with aphasia need their own space to adjust to<br />
the massive impact that aphasia can place on the relationship. In the<br />
past, the charity’s focus at group level was very much on the person with<br />
aphasia, somewhat to the exclusion of carers. Now, recognis<strong>in</strong>g that a<br />
well-supported carer can offer the best support to the person with aphasia,<br />
we are broaden<strong>in</strong>g our approach and lay<strong>in</strong>g on workshop sessions to<br />
explore the most press<strong>in</strong>g issues for carers.<br />
As well as local group meet<strong>in</strong>gs, people with aphasia meet together at<br />
Speakability network meet<strong>in</strong>gs. These often have a ‘social’ core - an<br />
enterta<strong>in</strong>ment or party - but they are an opportunity to share successes<br />
across the region. For example, members of groups that have raised<br />
money to pay for computers and <strong>in</strong>formation technology tra<strong>in</strong><strong>in</strong>g for<br />
group members share with others how they did it. The feel<strong>in</strong>g of<br />
achievement, <strong>in</strong> both hav<strong>in</strong>g undertaken the activity and then hav<strong>in</strong>g<br />
communicated with others about it, is palpable. Involvement as a<br />
spokesperson or group officer gives people with aphasia an opportunity<br />
to rega<strong>in</strong> some of the status and social contact they may have lost when<br />
aphasia robbed them of work or leisure activities.<br />
In addition to our work directly with people with aphasia, Speakability<br />
undertakes to make the environment more ‘aphasia-friendly’. Calls to<br />
the <strong>in</strong>formation service are typically about how to access services and<br />
SPEECH & LANGUAGE THERAPY IN PRACTICE SUMMER 2003<br />
support for people with aphasia and what family members can do themselves<br />
to help rebuild communication.<br />
We run tra<strong>in</strong><strong>in</strong>g courses for health and social care professionals and<br />
unpaid carers to help them improve their own communication abilities,<br />
and create a better climate for communication for the aphasic person.<br />
Recent publications, <strong>in</strong>clud<strong>in</strong>g the guidel<strong>in</strong>es booklet Rebuild<strong>in</strong>g<br />
Communication and the Patient’s Passport, address the same need.<br />
Our campaign<strong>in</strong>g activities and materials that focus on the rights of<br />
people with aphasia, such as the Charter for People with Aphasia and<br />
“Jo<strong>in</strong>ed Up Talk<strong>in</strong>g, Jo<strong>in</strong>ed Up Work<strong>in</strong>g”, are <strong>in</strong>tended to stimulate<br />
change at policy and service plann<strong>in</strong>g levels. Our annual lecture series,<br />
the Mary Law Lecture, aims to generate creative discussion and practice<br />
with<strong>in</strong> the speech and language therapy community. Speakability is also<br />
a stakeholder <strong>in</strong> the Royal College of <strong>Speech</strong> & <strong>Lang</strong>uage Therapists’<br />
Aphasia Guidel<strong>in</strong>es development project.<br />
The title of our forthcom<strong>in</strong>g Annual Meet<strong>in</strong>g - “Putt<strong>in</strong>g people with<br />
aphasia at the heart of their services” - could easily be rephrased as<br />
“Putt<strong>in</strong>g people with aphasia <strong>in</strong> the driv<strong>in</strong>g seat”. They are the experts<br />
<strong>in</strong> where they want to go. Our role as navigator is to make it as smooth<br />
and excit<strong>in</strong>g a ride as possible.<br />
*Record set <strong>in</strong> new-style M<strong>in</strong>i 19/12/01. Record for old-style M<strong>in</strong>i, set<br />
3/7/00 is 18 women.<br />
STOP PRESS<br />
Chief speech and language therapist Lizzy Marks attended<br />
Speakability’s Rebuild<strong>in</strong>g Communication reception <strong>in</strong> March<br />
on behalf of <strong>Speech</strong> & <strong>Lang</strong>uage <strong>Therapy</strong> <strong>in</strong> Practice. Hosted<br />
by Tim Boswell, Shadow M<strong>in</strong>ister for Education & Skills and<br />
for Disabilities, well over 100 people came to Westm<strong>in</strong>ster for<br />
the launch of the Rebuild<strong>in</strong>g Communication guidel<strong>in</strong>es, the<br />
Patient’s Passport Consultation and work on a more aphasiafriendly<br />
website.<br />
In a personal message, the Prime M<strong>in</strong>ister Tony Blair said of<br />
Speakability, “I am delighted to see that the charity is<br />
successfully br<strong>in</strong>g<strong>in</strong>g together <strong>in</strong>dividuals and organisations<br />
that can work together to dismantle the barriers that face<br />
people with aphasia and other communication impairments.”<br />
John Hughes, who heads the Disability and Carers Directorate<br />
Benefit Policy Division, reported that the government is<br />
committed to provid<strong>in</strong>g an accessible customer service <strong>in</strong><br />
benefits offices. In a roll<strong>in</strong>g tra<strong>in</strong><strong>in</strong>g programme, the first<br />
module is about deal<strong>in</strong>g with people with communication<br />
impairments, and 8000 staff will be us<strong>in</strong>g Speakability’s<br />
Rebuild<strong>in</strong>g Communication guidel<strong>in</strong>es <strong>in</strong> their tra<strong>in</strong><strong>in</strong>g.<br />
Speakability’s chief executive Anne Keatley-Clarke po<strong>in</strong>ted<br />
out that the views of people with aphasia were excluded<br />
from a national user survey as the <strong>in</strong>terviewers didn’t know<br />
how to communicate with them. She hopes the Patient’s<br />
Passport will allow an alternative means of communication<br />
with benefits <strong>in</strong>clud<strong>in</strong>g better <strong>in</strong>formed consent, counsell<strong>in</strong>g<br />
and advice. Lizzy Marks believes that, “the communication<br />
passport will be <strong>in</strong>valuable for ensur<strong>in</strong>g that clients attend<strong>in</strong>g<br />
medical or social appo<strong>in</strong>tments can have their needs met by<br />
professionals.” Any therapists wish<strong>in</strong>g to take part <strong>in</strong> the<br />
consultation on the Patient’s Passport (for anyone with a<br />
communication difficulty, not just aphasia) can request a<br />
sample passport to trial with clients and then offer feedback<br />
by the end of August. E-mail speakability@speakability.org, or<br />
fax 0207 928 9542 with your details. A follow-up workshop<br />
will take place <strong>in</strong> central London <strong>in</strong> September to review the<br />
consultation and consider the next steps.
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EVENTS<br />
19 June 2003<br />
National Autistic Society<br />
Autistic Spectrum Disorders and Sexuality<br />
London<br />
£99 professionals, £60 parents<br />
NAS Conference and Events Department, 0115 911<br />
3367, e-mail conference@nas.org.uk<br />
Association of <strong>Speech</strong> & <strong>Lang</strong>uage Therapists <strong>in</strong><br />
Independent Practice<br />
20 June, 2003, Read<strong>in</strong>g & 18 August, 2003, Coventry<br />
Mak<strong>in</strong>g the best use of supervision<br />
14-15 July, 2003, Bedfordshire<br />
A practical guide to special educational needs statement<strong>in</strong>g<br />
and tribunal procedures for parents and professionals<br />
Details of these and other courses: Jo Frost, tel. 0121<br />
628 2813, e-mail jo@quest-tra<strong>in</strong><strong>in</strong>g.com, or see<br />
www.helpwithtalk<strong>in</strong>g.com<br />
17-18 July 2003<br />
Wales International Conference on Electronic Assistive<br />
Technology<br />
Cardiff<br />
Themes <strong>in</strong>clude the multidiscipl<strong>in</strong>ary approach,<br />
improvement of professional standards, best practice,<br />
fund<strong>in</strong>g.<br />
See www.wiceat.org<br />
12-14 September 2003<br />
British Stammer<strong>in</strong>g Association<br />
Silver Jubilee Conference<br />
Tr<strong>in</strong>ity & All Sa<strong>in</strong>ts College Leeds<br />
Provisional programme <strong>in</strong>cludes: avoid<strong>in</strong>g avoidance,<br />
the Paxman <strong>in</strong>terviews, cognitive behavioural therapy<br />
and positive self talk for teens.<br />
www.stammer<strong>in</strong>g.org<br />
7-10 October 2003<br />
Johansen Sound <strong>Therapy</strong><br />
With Dr Kjeld Johansen PhD<br />
South Queensferry, by Ed<strong>in</strong>burgh £350<br />
A form of auditory <strong>in</strong>tegration tra<strong>in</strong><strong>in</strong>g to enhance<br />
auditory process<strong>in</strong>g skills <strong>in</strong> children with a variety of<br />
difficulties, and make teach<strong>in</strong>g and therapy more<br />
effective.<br />
Details: Camilla Leslie, tel/fax 0131 337 5427, e-mail<br />
camilla.leslie@johansensoundtherapy.com.<br />
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UBSCRIPTION FORM SUBSCRIPTION FORM SUBSCRIPTION FORM
These ideas are from<br />
people liv<strong>in</strong>g with<br />
aphasia who have<br />
attended Connect<br />
for a day events <strong>in</strong><br />
Bristol and Cornwall�<br />
These roadshow<br />
network<strong>in</strong>g and<br />
<strong>in</strong>formation events<br />
were set up <strong>in</strong><br />
response to a<br />
consultation with<br />
over ��� people<br />
liv<strong>in</strong>g with aphasia<br />
<strong>in</strong> the South West<br />
of England� There<br />
were about ��<br />
people with aphasia<br />
at each of the<br />
events as well as<br />
relatives and friends�<br />
Here are some of<br />
their top tips for<br />
better<br />
conversations���<br />
With thanks to all<br />
the people with<br />
aphasia who came<br />
to the events and<br />
shared their<br />
stories and ideas�<br />
More about<br />
Connect for a day<br />
events at<br />
www�ukconnect�org<br />
or phone<br />
Carole Cross on<br />
���� ��� �����<br />
1. Put on the brakes<br />
Typically people talk too fast and too much. Everyone<br />
always seems <strong>in</strong> a rush. This is particularly the case on<br />
hospital wards and <strong>in</strong> nurs<strong>in</strong>g home sett<strong>in</strong>gs but also<br />
with friends and family. People who remember to slow<br />
down and give you time to th<strong>in</strong>k, time to jo<strong>in</strong> <strong>in</strong> and<br />
time to reply are a very, very valuable resource.<br />
Although this seems quite straightforward, many people<br />
f<strong>in</strong>d slow<strong>in</strong>g down exceptionally difficult. Tell them how<br />
much slow<strong>in</strong>g down helps and what a difference it<br />
makes - and rem<strong>in</strong>d them when they forget.<br />
2. Demand respect<br />
The ‘does he take sugar?’ syndrome is still alive and<br />
kick<strong>in</strong>g. Be<strong>in</strong>g treated as if you were stupid or just pla<strong>in</strong><br />
ignored is still an everyday experience for people liv<strong>in</strong>g<br />
with aphasia. You have op<strong>in</strong>ions, <strong>in</strong>terests, ideas and<br />
the ability to be <strong>in</strong>volved. You don’t have to put up<br />
with people who shout, who f<strong>in</strong>ish your sentences, or<br />
who pretend to understand you.<br />
Treat<strong>in</strong>g you as a person and remember<strong>in</strong>g to listen to<br />
you is all it takes to make a huge difference. Silence<br />
really can be golden!<br />
3. Spread the word<br />
Aphasia is hidden and aphasia is complex. People don’t<br />
know what it is and they don’t know how to react, so<br />
you have to teach them.<br />
There are lots of sources of <strong>in</strong>formation to help. The Aphasia<br />
Handbook has <strong>in</strong>formation <strong>in</strong> an easy to use style and there is<br />
a new website along similar l<strong>in</strong>es at www.aphasiahelp.org.<br />
The Stroke Association and Speakability also produce useful<br />
<strong>in</strong>formation to tell others what aphasia is.<br />
The Aphasia Handbook by Susie Parr, Carole Pound,<br />
Sally Byng and Bridget Long is published by Connect<br />
Press, ISBN 0953604209. Available for £12.75 <strong>in</strong>c. p+p<br />
from Ecodistribution, tel/fax 01239 891431.<br />
www.stroke.org.uk www.speakability.org<br />
4. Understand about good days and bad days<br />
Nearly everyone with aphasia has good days and bad<br />
days. People talked about how confus<strong>in</strong>g and frustrat<strong>in</strong>g<br />
this can be.<br />
People with aphasia have different ways of deal<strong>in</strong>g with<br />
this - not push<strong>in</strong>g yourself, leav<strong>in</strong>g the tough jobs and<br />
go<strong>in</strong>g shopp<strong>in</strong>g, tell<strong>in</strong>g people you are hav<strong>in</strong>g a bad<br />
day, ask<strong>in</strong>g for a bit more help than usual, go<strong>in</strong>g to<br />
bed. Another important tip is recognis<strong>in</strong>g and<br />
remember<strong>in</strong>g when the good days are gett<strong>in</strong>g more<br />
frequent and the bad days gett<strong>in</strong>g less.<br />
5. Make a life book<br />
Conversations are so much easier when people know who<br />
you really are and what you are <strong>in</strong>terested <strong>in</strong>. Mak<strong>in</strong>g a<br />
life book can be a great way of work<strong>in</strong>g on communication<br />
skills like writ<strong>in</strong>g and talk<strong>in</strong>g. It can help you to talk<br />
about yourself and your past - to make relationships with<br />
new people and talk about past experiences with old<br />
friends. Even close friends and family can f<strong>in</strong>d it hard to<br />
have and develop conversations, so a book about your life<br />
and important events, people and achievements can be a<br />
start<strong>in</strong>g po<strong>in</strong>t for conversations and shar<strong>in</strong>g stories.<br />
Lots of people talked about hav<strong>in</strong>g but not us<strong>in</strong>g communication<br />
books they had worked on with the speech<br />
and language therapist. Some people with aphasia and<br />
their relatives described them as ‘bor<strong>in</strong>g’, ‘childish’ and<br />
not very helpful <strong>in</strong> talk<strong>in</strong>g about real, everyday topics<br />
and issues. So it’s important to choose carefully what<br />
you want to put <strong>in</strong> and what you really like to talk<br />
about with different people.<br />
Beyond Aphasia has a chapter on develop<strong>in</strong>g and us<strong>in</strong>g<br />
communication books and a chapter on identity and<br />
develop<strong>in</strong>g personal portfolios - see Pound, C., Parr, S.,<br />
L<strong>in</strong>dsay, J. & Woolf, C. (2000) Bicester: <strong>Speech</strong>mark ISBN<br />
086388 347 9.<br />
MY TOP RESOURCES<br />
6. Make aphasia visible<br />
Communication disability is very often <strong>in</strong>visible. If people<br />
can’t see or don’t know you have communication<br />
difficulties they won’t cut you any slack. When other<br />
people do realise there’s someth<strong>in</strong>g unusual about your<br />
speech, their own embarrassment or fear of gett<strong>in</strong>g<br />
stuck may immediately become a further barrier to<br />
good, two-way conversation. So take the <strong>in</strong>itiative and<br />
tell people about your difficulties and what helps you.<br />
Lots of people use credit card size explanations that<br />
they have had a stroke and have aphasia. Some people<br />
rarely get them out but just hav<strong>in</strong>g them <strong>in</strong> their wallet<br />
or purse is a way of feel<strong>in</strong>g more secure about expla<strong>in</strong><strong>in</strong>g<br />
if they do get stuck. Not everyone feels comfortable<br />
about say<strong>in</strong>g they have had a stroke or head <strong>in</strong>jury<br />
because they might then be labelled. But for some, a<br />
Stroke Association or customised card (or set of cards)<br />
about why they have aphasia and what helps them is a<br />
handy way of mak<strong>in</strong>g the <strong>in</strong>visible more visible.<br />
7. Be prepared<br />
Dates, times and places are some of the hardest th<strong>in</strong>gs<br />
to remember and use. Always hav<strong>in</strong>g a calendar, diary<br />
and maps to hand can help you feel confident that<br />
arrangements have been understood by both parties.<br />
What’s more they are part of every day life for all people,<br />
not someth<strong>in</strong>g different and unusual or stigmatis<strong>in</strong>g.<br />
8. Pick up the phone<br />
Many people with aphasia talked of their difficulties<br />
with and tendency to avoid us<strong>in</strong>g the phone. This can<br />
be yet another source of feel<strong>in</strong>g excluded and cut off.<br />
One <strong>in</strong>genious solution for people who don’t feel confident<br />
enough to talk but who want to be <strong>in</strong>volved is to listen<br />
<strong>in</strong> on an extension or speakerphone. Other people<br />
talked about us<strong>in</strong>g voice activated messages on mobile<br />
phones as a useful alarm system for emergencies -<br />
speak<strong>in</strong>g a s<strong>in</strong>gle familiar word <strong>in</strong>to the phone will<br />
automatically dial your emergency person. And for others,<br />
us<strong>in</strong>g a fax rather than a phone lets them see the number<br />
to dial and to send and receive messages - they keep <strong>in</strong><br />
touch without the fluster associated with voice-only calls.<br />
9. Put pen to paper<br />
When other people write th<strong>in</strong>gs down it can be so<br />
much easier to follow and remember conversations.<br />
People don’t naturally do this so you have to tell them<br />
to write it and what exactly is helpful to you - for example<br />
just the key words rather than long sentences. Always<br />
hav<strong>in</strong>g a pen and pad to hand means that writ<strong>in</strong>g just<br />
becomes a natural part of the conversation rather than<br />
a big <strong>in</strong>convenience.<br />
10. Be positive<br />
People with aphasia talked about remember<strong>in</strong>g to celebrate<br />
your successes no matter how big or small, about<br />
relax<strong>in</strong>g and hav<strong>in</strong>g a laugh, about do<strong>in</strong>g th<strong>in</strong>gs with<br />
friends that you both enjoy. Th<strong>in</strong>gs may be hard but<br />
remember to go for it! Another side of a positive attitude<br />
is to forgive others and don’t hold on to your angry<br />
feel<strong>in</strong>gs. Try to forget it and move on - though don’t be<br />
afraid to show your feel<strong>in</strong>gs either.<br />
And f<strong>in</strong>ally, remember there is always room for<br />
improvement. Change doesn’t just happen <strong>in</strong> the first<br />
six months, it can go on for many, many years. Time<br />
and aga<strong>in</strong> people gave examples of life and conversation<br />
improv<strong>in</strong>g years and years after their stroke - like one<br />
woman who has just got married and found love, happ<strong>in</strong>ess<br />
and better conversations 10 years after her stroke.