E-INTERVIEW with Michael Cunningham - Cystic Fibrosis ...
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AUTUMN 2006<br />
Future Force<br />
MAGAZINE OF THE CYSTIC FIBROSIS ASSOCIATION ASSOCIATION<br />
OF IRELAND<br />
by pwcf for pwcf<br />
language bias<br />
patient liaison group
CONTENTS<br />
Introduction ............................................................ 1<br />
Editorial - Jean Byrne<br />
E-Interview .............................................................. 2<br />
An upcoming singer/songwriter - <strong>Michael</strong> <strong>Cunningham</strong><br />
chats <strong>with</strong> Eleanor Walsh<br />
Web Watch ............................................................... 3<br />
The Health Service Executive is under the microscope<br />
Snip Snip .................................................................. 4<br />
Standing up for the male members<br />
Nathan Swan<br />
29th European CF Conference ............................... 5<br />
From the city <strong>with</strong> character & charm, Copenhagan<br />
Carol Brady<br />
What Ails Ye ............................................................. 7<br />
Smoking is “banned” in the hospital environment.<br />
Jean Byrne<br />
Photo Gallery .......................................................... 8<br />
CFAI Annual Conference, Portmarnock, Dublin<br />
Removing the language bias ................................. 9<br />
Why do you see our disability first?<br />
Tom King<br />
AHEAD ...................................................................... 10<br />
Association for higher level education access & disability<br />
2 nd Hospital Hygiene Audit Results ...................... 11<br />
How clean is your hospital?<br />
Italian Connection .................................................... 12<br />
The importance of having holiday insurance.<br />
Orla Tinsley<br />
Silent Partner ........................................................... 13<br />
The PWCF talk from this year’s CFAI conference<br />
Patricia Duffy<br />
Patient Liaison Group .............................................. 15<br />
It’s good to talk; you have a voice in St. Vincent’s hospital<br />
Autogenic Drainage ................................................. 16<br />
Find out why people are switching to this simple airway<br />
clearance technique.<br />
Aoibheann Leeney & Hope Fisher<br />
Vinny ......................................................................... 18<br />
Overheard conversations<br />
pg 7<br />
pg 11<br />
pg 4<br />
pg 10<br />
pg 5
H<br />
ello friends! FF fame is spreading - a recent<br />
issue fell into the lap of none other than new<br />
consultant in St. Vincent's, Dr. Ed McKone… given<br />
to him by one of his ex-pat patients while he was<br />
still working in Seattle… that's the USA - we agree,<br />
it's a great story! Our mag. committee's chests are<br />
puffed out in pride!<br />
Yet another experience that makes us proud was a<br />
comment made by a non-CF patient on a ward,<br />
who remarked that ours was the only consultant<br />
she ever saw washing his hands after he was <strong>with</strong><br />
his patient. We're not saying that other consultants<br />
don't do it but transparency plays a big part in confidence<br />
in the health system… and the CF team in<br />
St. Vincent's is leading the way.<br />
What <strong>with</strong> the hot weather in conjunction <strong>with</strong> the<br />
smoking ban it is becoming nigh on impossible to<br />
find a smoke-free zone in which to lap up the rays<br />
- see our featured "What Ails Ye?" Plus… Nathan<br />
gets snippy, standing up for the male member…<br />
while Carol gives us her pick of the European CF<br />
Conference from Denmark… and in best Ross<br />
O'Carroll-Kelly fashion we just have to say, "Oh My<br />
God, roysh, you just have to listen to this new<br />
singer goy we've, like, "discovered"… he's so Kool<br />
& the Gang!"<br />
Mary Harney was caught once again by one of<br />
those dastardly young pwcf who keep popping up<br />
at the most inopportune moments (for Mary) &<br />
demanding a new CF Unit… well done Denise<br />
Saul! However, there's a new way to get your opinions<br />
across to St. Vincent's management <strong>with</strong> the<br />
set-up of the Patient Liaison Group. Ciaran Bohan<br />
& Rory Tallon will meet regularly <strong>with</strong> the CF team<br />
& hospital administration in St. Vincent's; a summary<br />
of their first meeting is inside. Staying <strong>with</strong><br />
the hospital theme, we've included a summary of<br />
the National Hospital Hygiene Audit.<br />
Thinking about college courses? Our article on<br />
AHEAD is a must-read. Lots of solid advice; very<br />
useful tips on how to deal <strong>with</strong> third level & improve<br />
ones study skills.<br />
Mamma mia, Orla will never forget her visit to<br />
Florence during the summer… two words for you<br />
Orla - salt tablets! Everybody's raving about AD,<br />
1<br />
INTRODUCTION<br />
no, not a cute newbie intern (that would be PJ!), its<br />
Autogenic Drainage… but I'm sure y'all knew that<br />
anyway. And of course Vinny is back! We've<br />
hooked a fabulous artist who has agreed to translate<br />
all of our weird & wonderful ramblings (side<br />
effects of the IV's, no doubt) into a sensible comic<br />
strip just for you… yes, you out there!<br />
Here follows the usual plea for articles, ideas &<br />
complaints … we need you to keep Vinny alive,<br />
give us plots, sub-plots, dialogue & direction for<br />
him! Send all to the addresses below… we'll even<br />
accept pigeons!<br />
SEND ALL LETTERS/ARTICLES TO<br />
The Magazine Group<br />
Future Force<br />
CF House<br />
24 Lower Rathmines Rd.<br />
Rathmines<br />
Dublin 6<br />
Email: futureforcemag@hotmail.com<br />
CREDITS<br />
Future Force is the property of:<br />
The <strong>Cystic</strong> <strong>Fibrosis</strong> Association of Ireland,<br />
CF House,<br />
24 Lower Rathmines Road,<br />
Dublin 6<br />
Tel: 01-4962433 Fax: 01-4962201<br />
Lo-call: 1890-311-211<br />
EDITING STAFF<br />
Jean Byrne Patricia Duffy<br />
DESIGN<br />
Jean Byrne<br />
MAGAZINE COMMITTEE<br />
Rory Tallon, Eleanor Walsh<br />
Olivia Coen, Daragh McGrath<br />
PHOTOGRAPHS<br />
Carol Burchael<br />
ORIGINAL ARTWORK<br />
Nathan Swan<br />
The views and opinions expressed in this<br />
magazine are not necessarily the views of<br />
The <strong>Cystic</strong> <strong>Fibrosis</strong> Association of Ireland.
E-<strong>INTERVIEW</strong><br />
E-<strong>INTERVIEW</strong> <strong>with</strong> <strong>Michael</strong> <strong>Cunningham</strong><br />
A new up & coming singer/songwriter!<br />
<strong>Michael</strong> <strong>Cunningham</strong> is a new up and coming<br />
singer/songwriter who hails from Co. Kildare.<br />
Currently he is living and working in Co. Kerry.<br />
Recently, Future Force caught up <strong>with</strong> him!!<br />
FF: So, tell us a little about yourself.<br />
<strong>Michael</strong>: Well, I'm in my 32nd year (!), have 2<br />
brothers and a sister and live in Killorglin <strong>with</strong> my wife<br />
Terry. We got married in South Africa last October,<br />
Terry is from there but I was born in Athy, Co. Kildare<br />
and moved to Kerry when I was 13. I work from home<br />
so it's great that I can stay in Kerry and not have to live<br />
in a big city - been there, done that! I went to College<br />
in Cork and then Dublin and also spent a year in<br />
London a few years back. I love to travel and have<br />
been to Australia and the USA a few times. Obviously<br />
spent some time in South Africa too! I enjoy water-skiing<br />
(in the summer!), walking and of course, music<br />
which I had always toyed <strong>with</strong> as a disgruntled teenager!<br />
FF: When did you start your involvement in<br />
music?<br />
Mike: I had always toyed <strong>with</strong> songs and when I was<br />
living in London I was listening to BBC London and a<br />
girl called Alice Martineau was being interviewed. She<br />
had just recorded a CD of her own material <strong>with</strong> Sony<br />
music and mentioned that she had CF and all the while<br />
was waiting for a lung transplant. I decided then to find<br />
a small studio in London and record a few tracks and<br />
maybe one of my own and was going to do it on my<br />
birthday, March 6th. The day I went into the studio,<br />
Alice died while awaiting her transplant and the same<br />
day, a friend of mine who had been on the transplant<br />
list went in to have it done.<br />
I recorded a few covers and one of my own, 'November<br />
Day'. The recording itself wasn't great but the feedback<br />
2<br />
I got from people was good enough for me to move<br />
home and take some time off to record a few more. The<br />
result of that was a 5 track demo I recorded in Kerry. I<br />
sent one to Christy Moore and Jack L, two people<br />
whose music I greatly enjoy, and they both called me<br />
to say they had enjoyed it which I was pretty chuffed<br />
<strong>with</strong> as you can imagine!!<br />
FF: Tell us about your gigs to date and which<br />
you enjoyed the most.<br />
Mike: I haven't really gigged much as such. I sang at<br />
my sister's wedding and at my own and here and there<br />
but nothing really other than that! I hope to do some<br />
gigs this summer to promote the new CD I am currently<br />
working on. I am doing a full 10 track CD of my own<br />
songs <strong>with</strong> no holes barred... no more demos! I played<br />
support to Jack L in the Granary in Cork a year or so<br />
ago which happened to be the same day that Billy<br />
Burke, whom I was in school <strong>with</strong>, died while waiting for<br />
his transplant. I was asked to sing at a rally for Billy<br />
shortly before he passed, which I was proud to do as it<br />
was an important cause. It was to protest that all the<br />
donor organs from Ireland only go to one hospital in the<br />
UK for transplants and Billy happened to be on the list<br />
at another hospital. I still can't believe that the minister<br />
for health refused to move on it at the time. Why do we<br />
put these people in power if not to act on our behalf?<br />
FF: Where do you get the inspiration for your<br />
songs?<br />
Mike: I don't really know. I had been thinking about<br />
that and a while back I was watching a documentary<br />
<strong>with</strong> U2 talking about song writing and Bono said that<br />
the songs are already out there somewhere and that<br />
the person writing is like a filter and the songs just are<br />
filtered through them. I liked that idea. I often try to sit<br />
down and write a 'funny song' or a 'story-type' song but<br />
I can't seem to do that. I just fiddle <strong>with</strong> the guitar until<br />
I find something I like and then write what comes to me<br />
in a kind of stream of consciousness kind of way and<br />
hope for the best! Although I wrote a song called 'The<br />
boy at the window' about CF so it seems sometimes I<br />
can focus!<br />
FF: Which song are you most proud of and<br />
why?<br />
Mike: Definitely 'The boy at the window'. At home<br />
when we were young, we had a CF collection box that<br />
we would have to put 10p in when we were bold or
whatever (lost a fortune that way!) and there was a picture<br />
of a small boy looking out a window and his<br />
expression always haunted me. He looked sad having<br />
to stay in doors while all the other kids were out playing.<br />
The caption on the collection box was 'The boy at<br />
the window' so I wrote a song about how I thought he<br />
must have been feeling and how I often felt as a<br />
youngster.<br />
FF: What other interests do you have?<br />
Mike: My parents live near the sea in Kerry in a place<br />
called Dooks so I spend a lot of time there. I have<br />
always loved the sea (after I recovered from seeing<br />
Jaws for the first time!) and enjoy skiing and larking<br />
about in the ocean. I enjoy walking and exploring in the<br />
country and going to concerts. I'm a big Billy Joel fan.<br />
He has about 20 albums and there isn't a song on one<br />
that I don't like. I read a lot of books too, mainly biographies<br />
or fact based books.<br />
Quick Fire Questions...<br />
FF:: McDonalds or Burger King?<br />
Mike:: Burger King by far.<br />
FF:: Book or DVD?<br />
Mike:: DVD is easier but the book is often superior so<br />
depends on the mood!<br />
FF:: Green Day or Radiohead?<br />
Mike:: I’d go for Green Day.<br />
FF:: Man United or Liverpool?<br />
Mike :: As football teams? No idea... to visit?<br />
Manchester.<br />
Eleanor:: Thank you very much for taking the time to do<br />
this interview, <strong>Michael</strong>. On behalf of Future Force I<br />
would like to wish you all the best <strong>with</strong> your music<br />
career!! To find out more about Mike or get his demo<br />
EP go to www.michaelcunninghammusic.com<br />
Ed’s note: A few of us at FF have listened to some of<br />
<strong>Michael</strong>s songs & his debut EP can be described as a<br />
moving, melancholic collection <strong>with</strong> a touch of Jack L,<br />
a hint of the Rat Pack & subtle U2 undertones. The<br />
consensus... we loved it and can only wait for his debut<br />
album to make number 1.<br />
3<br />
www.hse.ie<br />
WEB WATCH<br />
The Health Service Executive (HSE) is the single<br />
body responsible for ensuring that everybody can<br />
access cost effective and consistently high quality<br />
health and personal social services. It replaces the<br />
old health boards, the newer regional health authorities<br />
plus a number of other different agencies and<br />
organisations. On the HSE website you will find all<br />
the latest press releases from the HSE, along <strong>with</strong><br />
news about special events and health related conferences.<br />
Look through a wide range of publications<br />
on health issues and developments & read the latest<br />
report on the new National Children's Hospital.<br />
Enter your details in the online calculator to check<br />
your eligibility for a GP Visit Card and Medical Card.<br />
Application forms for various services are available<br />
for download. And... an A&E activity table is updated<br />
daily showing the numbers of people waiting for<br />
beds & lists the HSE near-term admission targets…<br />
(worth printing out & laminating!)<br />
www.oasis.gov.ie<br />
EB ATCH<br />
www.oasis.gov.ie/moving_country/moving_abroad/<br />
e111.html<br />
A very useful website for all sorts of services and<br />
entitlements. This time we’re looking at The<br />
European Health Insurance Card. This card<br />
replaced the old E111 form and a number of other<br />
'E' forms. Information covered on the site includes<br />
1. Rules 2. Rates 3. How to apply & 4. Where to<br />
apply. Like the old E111, the European Health<br />
Insurance Card only entitles you to the state-funded<br />
health care scheme in the country in which you are<br />
staying. It will not cover any of the costs involved in<br />
transporting you back to Ireland. The card is valid<br />
for 2 years. There is no fee for the Card. You may<br />
apply online or you can download an application<br />
form. Complete the form and return it to your Local<br />
Health Office at least 1 month before you leave<br />
Ireland.
SNIP SNIP<br />
As we know <strong>Cystic</strong> <strong>Fibrosis</strong> can come <strong>with</strong> a series of<br />
problems: ranging from the more common problems,<br />
such as chest infections, diabetes, even epilepsy in<br />
some cases; not to mention the lesser problems like<br />
having fat drumstick fingers and a chest like a pigeon.<br />
But one thing I haven't read any articles on, but from<br />
my understanding can affect more male PWCF than<br />
may be willing to admit too is the possible need for circumcision.<br />
Yes, sorry ladies and those of you who are easily<br />
offended by the mentioning of the male member but<br />
this is an article about penises, and the problems that<br />
can arise from being born <strong>with</strong> one.<br />
I'm going to start by guessing everyone knows what a<br />
penis is? If not, well then tough luck because it isn't my<br />
place to explain the birds and the bees. I'm going to<br />
take you back a few years to when I was a child and I<br />
was learning to use the bathroom. One thing most kids<br />
learn as they get older is to pull their foreskin back<br />
from their penises; it's perfectly natural and a part of<br />
life, I on the other hand never learned to do this, why,<br />
you may ask?<br />
Well it's not like I'm a complete and utter idiot, it's just<br />
that quite simply I couldn't pull back my foreskin <strong>with</strong>out<br />
tearing the skin and causing myself to bleed. So I<br />
just simply didn't pull back my foreskin at all. This, in<br />
later years became a problem as I started to grow and<br />
mature.<br />
Sex was just as fun as it should be; the only time things<br />
wouldn't go to plan would be when my partner would<br />
ask me why I didn't pull back my foreskin, a bit embarrassing<br />
yes but I learned a trick; turning off the lights.<br />
But enough of my misspent youth, I still didn't seek<br />
help for my problem quite simply because I didn't<br />
understand why I couldn't do what was so natural to<br />
everyone else. A combination of embarrassment and<br />
lack of knowledge, it wasn't till December 2004 that<br />
one night myself and a friend <strong>with</strong> CF ended up talking<br />
shop that I found out I wasn't alone when it came to the<br />
problems I had been experiencing. I'm not a religious<br />
man but HALLELUJAH.<br />
It turned out that my fellow cystic didn't have as dire a<br />
case as myself, but it was bad enough that after much<br />
talking we decided that we would do something about<br />
4<br />
By Nathan Swan<br />
it, we would say it to the medical team when we saw<br />
them next, after all as we were both inpatients at the<br />
time we had a cohort of doctors whose medical advice<br />
we could call upon. So one day my friend swallowed<br />
his pride and approached the senior house office<br />
(SHO) who was on the CF team in Vincent's at the<br />
time.<br />
After explaining the delicate nature of the situation the<br />
SHO, understanding that my friend would like this matter<br />
to be kept quiet, gave my friend a tube of cansten<br />
cream and explained why this was happening to him.<br />
OK, here comes the science bit, the antibiotics which<br />
we take to stave off chest infections can cause this<br />
problem in both men and woman <strong>with</strong> CF. The skin<br />
gets dried out and irritated by the remains of the antibiotics<br />
we urinate out of our systems, the affected skin<br />
becomes tight and dry causing it to split and bleed<br />
when trying to retract the foreskin, this doesn't happen<br />
to everyone but it can happen to a lot of people.<br />
As soon as I learned this my first thought was I had<br />
better get myself some cansten cream, so as the SHO<br />
who my friend had approached was away I had to go<br />
tell my tale to the Registrar on the CF team who just<br />
happened to be a smoking hottie. I explained my situation<br />
to her and she prescribed me some cansten<br />
cream and told me the SHO would see me when he<br />
got back of his holiday, also I was given an appointment<br />
for a urology clinic.<br />
From this point onwards my penis was quite literally in<br />
someone else's hands! After seeing the urology team<br />
a few times in clinic and while as an outpatient the urology<br />
team gave me an ultimatum, either use cansten<br />
cream periodically or I could opt for a circumcision.<br />
Now you must understand one thing about me before<br />
we can go on, I am the type of person who can take<br />
hard decisions in his stride and yet spend hours deciding<br />
what fillings I want in my sandwiches. I opted for<br />
the circumcision straight away. After a year that<br />
brought problems meaning I couldn't have the operation<br />
done, I finally got the snip a week before my 23rd<br />
birthday. The operation took longer than I thought it<br />
would have. I was given an epidural instead of an<br />
anaesthetic; this was very weird because I was awake<br />
for the majority of the operation. I listened to the two<br />
surgeons talking <strong>with</strong> one another as they plied their
trade. OK, here is a question for you, why is it every<br />
time I'm awake having an operation done doctors<br />
always talk about golf? It's weird.<br />
I spent the time during the operation staring out of the<br />
window that was to my right thinking what a beautiful<br />
day it was, the sun was shining, the birds were singing,<br />
doctors were talking about golf and I was happy<br />
because I knew that my problems would soon be over,<br />
it was quite surreal at the time. When I came back<br />
down from theatre I had to stay flat on my back for the<br />
rest of the day because of the epidural.<br />
As operations go it was pretty painless, I only took two<br />
panadol the day after the operation and that was<br />
because I had a headache nothing to do <strong>with</strong> the sur-<br />
5<br />
gery.<br />
EUROPEAN CONFERENCE<br />
After about ten days the stitches fell out while in the<br />
shower and I was a new man, it's now been five<br />
months since the operation and things have never<br />
been better.<br />
I know that having this operation wouldn't be for everyone,<br />
more than likely most people wouldn't need to<br />
have it done. But if there is one thing I hope to achieve<br />
by writing this article, I hope in future people <strong>with</strong> problems<br />
such as this go to their doctor and don't take as<br />
long as I did to do something about it. But if they are<br />
too mortified to say anything to their doctor then I hope<br />
they find a fellow PWCF to, how shall we say; talk<br />
shop. If you know what I mean.<br />
This year the 29th European <strong>Cystic</strong> <strong>Fibrosis</strong> Conference was held in Copenhagen, Denmark,<br />
June 2006. The venue was the Bella Centre just 20 minutes outside Copenhagen, <strong>with</strong> an extensive<br />
and very reliable network of public transport. Copenhagen is a wonderful city; it is full of character<br />
and charm. With its crooked rooftops and Copper Towers, it’s winding streets and busy cafes, it is a<br />
bustling city.<br />
The Danish capital has a friendly feel to it, and the Danish themselves are an extremely friendly<br />
nation. The Conference took place over 3 days <strong>with</strong> an array of topics to choose from. Here are just<br />
a few of the topics that interested me. By Carol Brady<br />
Work disability in adults <strong>with</strong> <strong>Cystic</strong> <strong>Fibrosis</strong><br />
and its relationship to quality of life.<br />
M. Braithwaite Clinical Psychologist Alfred Hospital<br />
Melbourne Australia.M. Braithwaite<br />
With CF adult numbers on the increase, issues<br />
related to work require specific attention. Work participation<br />
rates and risk factors for work disability for<br />
adults <strong>with</strong> CF were examined. 49 PWCF from an<br />
adult CF service were recruited; factors taken into<br />
consideration were employment history, illness<br />
severity indicator and CF attributed work disability<br />
factors were evaluated.<br />
In over half of the PWCF (51%) CF had affected the<br />
choice of occupation, career or decision to seek<br />
employment. Over a third (37%) had to change their<br />
specific job duties because of CF, over a quarter<br />
(25%) had taken a cut in income, and a third (35%)<br />
endorsed having ceased work because of CF.<br />
When examining questions related to limitations of<br />
employment (68%) of PWCF answered positively to<br />
one or more questions, however few had sought<br />
vocational guidance (6%).<br />
Staff knowledge and understanding of segregation<br />
policies in a large adult CF unit.<br />
H. Miller Regional CF Adult Unit, The Cardiothoracic<br />
Centre Liverpool UK.<br />
Prevention of cross infection through effective CF<br />
patient segregation requires the cooperation of staff<br />
as well as patients.<br />
In order to ascertain staff awareness for the<br />
reformed segregation policy introduced at the Large<br />
Adult Unit (Regional Adult CF unit in Liverpool, UK)<br />
we audited staff knowledge in 8 key departments at<br />
our hospital where carers work closely <strong>with</strong> PWCF.<br />
181 anonymous questionnaires designed to test<br />
staff awareness and knowledge was sent to staff in<br />
the main CF ward and other medical and surgical<br />
wards, the questionnaires were also sent to private<br />
wards and the physiotherapy and Pulmonary<br />
Function Departments.
EUROPEAN CONFERENCE<br />
86 questionnaires (48%) were returned by staff<br />
employed for an average of 10 years by the hospital.<br />
In 6 departments all staff were aware that<br />
patients were segregated and understood the reasons<br />
for this, but in 3 departments 3 carers (4%)<br />
were unaware. 80 (93%) of staff felt that segregation<br />
was a good idea, but 37 (43%) had concerns<br />
regarding its affect, 24 (28%) were unaware of the<br />
importance of B Cenocepacia and 30 (35%) were<br />
unaware of other Cepacia strains, 68 (79%) were<br />
unaware of Pseudomonas species, 53 (64%) were<br />
aware that some strains were transmissible. 37<br />
(43%) expresses concerns about the adoption of<br />
segregation by PWCF and a further 41 (48%) felt<br />
that not all of their colleagues implemented the policy<br />
all the time. 48 (56%) felt unsupported by the CF<br />
team regarding segregation.<br />
Increased segregation in an adult <strong>Cystic</strong><br />
<strong>Fibrosis</strong> centre: the impact on patients’ feelings<br />
and behavior.<br />
J. Milnes of Manchester Adult CF centre UK.<br />
Patient's views on what they need.<br />
PWCF have experienced changes in the organisation<br />
of CF wards and clinics due to new cross infection<br />
guidelines. Patients concerns about segregation<br />
need to be addressed.<br />
Patients at the Manchester Adult <strong>Cystic</strong> <strong>Fibrosis</strong><br />
Centre were surveyed to establish their needs and<br />
suggestions for what might help in the adjusting to<br />
segregation on a CF ward.<br />
A structured self-completed questionnaire was distributed<br />
to 100 PWCF. They were in and out patients<br />
<strong>with</strong> Pseudomonas aeruginosa infection.<br />
31% of PWCF reported not knowing their own infection<br />
status; a further 3% incorrectly reported their<br />
status despite the fact that 63% had being admitted<br />
to the segregated CF ward that year.<br />
36% of PWCF felt they needed more information<br />
about cross infection and explanations for segregation.<br />
42% felt a written leaflet would be most useful,<br />
while 28% preferred to receive information via letters,<br />
and 22% in face-to- face discussions. 67% of<br />
PWCF had suggestions for what might help deal<br />
<strong>with</strong> the effects of segregation.<br />
Most common requests were for: recreational activates<br />
to help pass the time (especially cable<br />
TV/game consoles/dvds), ensuite bathrooms, computer<br />
and internet access in each room, and access<br />
6<br />
to kitchen facilities. 4 PWCF reported they should<br />
be able to continue to mix on the ward at their own<br />
discretion.<br />
Myself and Deirdre Meredith would like to extend<br />
our thanks to the nurses & doctor’s of Limerick<br />
Regional Hospital and St Vincent’s University<br />
Hospital for arranging our letters to travel.<br />
From left to right: Carol Brady, Deirdre Meredith &<br />
Godfrey Fletcher <strong>with</strong> conference delegates.<br />
Love is patient:<br />
love is kind...<br />
It bears all things,<br />
believes all things,<br />
hopes all things,<br />
endures all things...<br />
Love never ends.<br />
1 Corinthians 13:4,7,8<br />
The “before” (top) & “after” (bottom).<br />
Congratulations to Daragh & Fil from all of us at FF!
WHAT AILS YE?<br />
Every day I live I become more militant about smokers.<br />
A bold statement? Not politically correct maybe<br />
in this age of extreme "P-C-ness"? Is there such a<br />
word? I don't care, it's my rant and I'll coin if I want<br />
to… as I said I'm feeling belligerent.<br />
It's a habit, an addiction, very difficult to give up; it's<br />
a personal choice, peer pressure… I've heard them<br />
all and I simply don't care - there's nothing a smoker<br />
can say that doesn’t sound like an excuse to me.<br />
Why, you ask do I feel this way? Surely <strong>with</strong> the success<br />
of the smoking ban, the canonisation of<br />
<strong>Michael</strong> Martin and the delight <strong>with</strong> which some<br />
smokers are declaiming how much less they are<br />
smoking I have no reason to be bitter.<br />
The addition of oxygen to my life is the answer. That<br />
and a recent spell in hospital during the hottest<br />
weather on record for over 10yrs has compounded<br />
my dislike of people who block entrances, exits,<br />
doorways and stairwells <strong>with</strong> their puffing.<br />
From the regularity <strong>with</strong> which patients gather at the<br />
same spot I'm almost positive that they are spreading<br />
word about it by describing it as "meeting at the<br />
no-smoking sign". Such sweet irony. Human<br />
nature… you argue. Lack of enforcement… I counter.<br />
Why does that fail to surprise in an Ireland where<br />
the attitude is "if you don’t catch me, charge me,<br />
hold me down & cattle prod me... then it’s not illegal"?<br />
On my breaks from the ward to find a breath of fresh<br />
air instead I found that the best spots on walls,<br />
benches and grassy patches were taken over en<br />
bloc by smokers. While me, <strong>with</strong> my tank on my<br />
back and fighting a chest infection, had to go that<br />
extra mile… literally, to find a spot where I too could<br />
7<br />
WHAT AIL’S YE<br />
Is there something that’s been bugging you for a while? Got something to get off your chest?<br />
Future Force invites you to have a good gripe and asks “What Ails Ye”? Put on your boots<br />
because we’re going on a long walk to find a smoke-free utopia!<br />
Smoking is “banned” in the hospital environment...<br />
By Jean Byrne<br />
share in the wonderful weather but not be choking<br />
and spluttering for the privilege.<br />
Would a designated non-smoking bench be outside<br />
the realm of possibility?<br />
On deeper reflection I sometimes think that maybe<br />
the problem lies <strong>with</strong>in our understanding of the<br />
English language… or lack thereof. Flammable<br />
means the same thing as inflammable (confusing, I<br />
know) but people take note … "prohibited" IS NOT<br />
synonymous <strong>with</strong> "allowed". Maybe the droning<br />
mechanical voice outside the main entrance of the<br />
hospital actually attracts rather than repels, hmm? A<br />
theory I would like to see researched by the<br />
Department of Preventative Medicine & Health<br />
Promotion <strong>with</strong>in that fine establishment. Funding<br />
anyone?<br />
Maybe there is something in all that stair climbing<br />
the physio puts you through in the name of exercise.<br />
I have decided to use mine for more subversive purposes…<br />
no, not to build up enough leg muscle to<br />
carry me swiftly past the swirls of smoke… but to<br />
increase my load bearing capabilities to carry a different<br />
sort of tank in my backpack... a fire extinguisher!<br />
Twenty years ago I sipped my juice in the smoky<br />
canteen in Crumlin Hospital; travelled in a smokefilled<br />
bus for many more years and looking back now<br />
society thinks "how unacceptable, how disgusting!"<br />
How long must I now wait for this latest scourge of<br />
free breathing people to be purged?<br />
My personal favourite solution; ban it. Ban smoking<br />
in all public places… and enforce it.
ANNUAL CONFERENCE PHOTO GALLERY<br />
Photos from the<br />
CFAI Annual<br />
Conference 2006.<br />
Hosted by the<br />
Eastern Branch &<br />
held in<br />
Portmarnock,<br />
Dublin.<br />
8
When we talk about "disability awareness" we are<br />
really talking about disability unawareness.<br />
People <strong>with</strong> disabilities do not want everyone to<br />
be aware of their disability and treat them accordingly.<br />
Often they find that they are either treated<br />
as someone/thing different from the norm "abnormal"<br />
or as though they do not exist at all "does he<br />
take sugar?". The thinking behind "disability<br />
awareness" is that all people should be treated in<br />
the same way taking into account their differences.<br />
People <strong>with</strong> disabilities want to be treated<br />
like anyone else not as "special people"<br />
So it is important that in our buildings, in our<br />
meetings, in our level of respect, in our<br />
language, we enable all people to have equal<br />
access and to be treated in a sensitive and equal<br />
manner.<br />
My particular issue on this occasion is "language".<br />
We all know that the child who is continually told<br />
that she is stupid will under perform. We all know<br />
that it is no longer politically acceptable to refer to<br />
black people as "blacks". I assume that we also<br />
know that it is unacceptable to refer to people <strong>with</strong><br />
disabilities as "the disabled" The disabled what?<br />
Why is this terminology wrong? Why do informed<br />
people no longer call travellers "Itinerants"? It is<br />
because the particular people being labelled do<br />
not like it. They find it offensive, they do not want<br />
to be labelled and especially in that manner.<br />
So what is my point? Well, I find it offensive and<br />
9<br />
LANGUAGE BIAS<br />
By Tom King<br />
demeaning to be labelled as a "CF adult"! Yes I'm<br />
an adult; yes I have <strong>Cystic</strong> <strong>Fibrosis</strong>, but why distinguish<br />
me from children <strong>with</strong> cystic fibrosis? If I<br />
had cancer I wouldn't be described as "a cancer<br />
adult". If I had a heart condition I wouldn't be<br />
described as a "Heart Condition Adult".<br />
I feel that I should be dealt as a person who has<br />
<strong>Cystic</strong> <strong>Fibrosis</strong> when the issue is relevant to the<br />
disease, but I want to be treated as an adult, independent<br />
of my disease, at all times.<br />
This issue came up strongly for me when the<br />
recent decision regarding the veto of our trip to<br />
Lourdes was made, due to cross infection. If I<br />
had been an adult suffering from any other condition,<br />
would I have had a say in this issue regarding<br />
my own health? Would I have been told that I<br />
could not go because my health condition would<br />
suffer? Or would I have been advised and allowed<br />
to make my own decision?<br />
Why, when you insist on using the terminology<br />
"CF Adult" do you refuse to treat us <strong>with</strong> the<br />
respect of adults? Why do you see our disability<br />
first?<br />
Ed’s note: For a number of years now we have been<br />
striving to change the antiquated politically incorrect<br />
references to people <strong>with</strong> CF. We are people in the<br />
first instance and have CF in the second instance…<br />
we are not CF person's; sufferers; cystic's; young<br />
adults or patients. We are people who live <strong>with</strong> cystic<br />
fibrosis - it is only a part of who we are; it is not<br />
the whole. Do not trivialise the significance of this as<br />
a fundamental principal of equality for all.
INFORMATION<br />
AHEAD<br />
Summary<br />
An all-Ireland organisation representative<br />
of the third-level sector.<br />
Its central mission is to promote<br />
access for, and the full participation<br />
of, students <strong>with</strong> disabilities<br />
in higher education.<br />
Introduction<br />
AHEAD is an independent nonprofit<br />
organisation working to promote<br />
full access to, participation<br />
in, benefit from and contribution<br />
to third level education by people<br />
<strong>with</strong> disabilities in Ireland, North<br />
and South. It is a registered charity<br />
(number CHY9999) and is<br />
funded by the Higher Education<br />
Authority, by members' subscriptions<br />
(members include all third<br />
level institutions on the island of<br />
Ireland and students <strong>with</strong> disabilities)<br />
and through European<br />
Union funding.<br />
AHEAD undertakes research in<br />
areas relating to disability and<br />
third level education and acts in a<br />
consultative capacity to the<br />
Higher Education Authority, educational<br />
institutions and other<br />
bodies in the education sector.<br />
AHEAD lobbies to improve<br />
access to and increase the participation<br />
of students <strong>with</strong> disabilities<br />
in third level education in<br />
Ireland. It also strives to inform<br />
and change national policy in the<br />
areas of the education of students<br />
<strong>with</strong> disabilities and the<br />
employment of disabled graduates.<br />
The website features the<br />
“Inclusive Education Information<br />
Centre”. This is an online reposi-<br />
Association For Higher Education<br />
Access and Disability<br />
tory of accessible education information<br />
for Ireland. Sections are<br />
divided into:<br />
oAccessing Third Level<br />
Education in Ireland - A Guide<br />
for Students <strong>with</strong> Disabilies &<br />
Learning Difficulties.<br />
oAble 4 College: Able 4 College<br />
provides information to guidance<br />
counsellors, teachers, parents<br />
and students <strong>with</strong> disabilities<br />
themselves, on career planning<br />
and third level supports, as well<br />
as information on different types<br />
of disability, disability etiquette<br />
and various teaching and learning<br />
techniques.<br />
oText Access: AHEAD, in collaboration<br />
<strong>with</strong> the Consortium of<br />
National and University Libraries,<br />
has developed a centralised and<br />
comprehensive catalogue of<br />
alternative format resources for<br />
students <strong>with</strong> disabilities at third<br />
level.<br />
Individuals can search for publications<br />
from any of the participating<br />
college Libraries in a variety<br />
of media, including :<br />
Electronic Text<br />
Audio - CD<br />
Audio - Cassette<br />
For more details go to<br />
http://www.textaccess.ie<br />
oGET AHEAD - Graduate<br />
Forum: is a national forum of selfadvocacy<br />
on behalf of graduates<br />
<strong>with</strong> disabilities. GET AHEAD's<br />
motto is "by, for and <strong>with</strong> graduates<br />
<strong>with</strong> disabilities". It draws on<br />
10<br />
the experience and enthusiasm<br />
of students who have successfully<br />
graduated from Higher<br />
Education in Ireland.<br />
oGreat Expectations! A project<br />
that aims to inform guidance<br />
counsellors about including students<br />
<strong>with</strong> disabilities in the guidance<br />
process.<br />
oQuest for Learning - Useful<br />
study skills for students. The<br />
Quest For Learning website provides<br />
a virtual learning support<br />
network designed to support all<br />
students making the move into<br />
third level courses. The academic<br />
demands of a third level course<br />
are very different from those at<br />
second level and this website has<br />
very useful tips on how to deal<br />
<strong>with</strong> those demands and quickly<br />
improve ones study skills in third<br />
level, guiding the student on how<br />
to set up an effective study system,<br />
how to take effective lecture<br />
notes and retain that key information.<br />
http://questforlearning.org<br />
oWilling Able Mentoring -<br />
WAM, a resource of graduates<br />
<strong>with</strong> disabilities and employers,an<br />
Equal funded program. WAM has<br />
the long term aim of facilitating<br />
and accelerating the transition of<br />
graduates <strong>with</strong> disabilities to<br />
careers appropriate to their skills<br />
and abilities.<br />
oFact Sheet ACCESS TO THIRD<br />
LEVEL - What you need to know.<br />
This information is aimed primarily<br />
at students <strong>with</strong> disabilities and<br />
is also relevant to guidance counsellors,<br />
parents and teachers.
There are a number of basic<br />
queries and issues that frequently<br />
arise for students <strong>with</strong> disabilities.<br />
These fact sheets aim to<br />
address these queries from a<br />
general perspective.<br />
This fact sheet provides information<br />
on:<br />
• Access and Admissions.<br />
• Disability Support Services.<br />
• Assistive Technology.<br />
• Learning Support.<br />
The second National Hygiene Audit of Acute<br />
Hospitals was published on 13th July 2006 by the<br />
National Hospitals Office (NHO) of the Health<br />
Service Executive (HSE)<br />
The audit was conducted over the months of<br />
February, March and April 2006 and visits by the<br />
auditors were random and unannounced. Hospitals<br />
were given an overall score, indicating a good<br />
(85% or above), fair (76%-84%), and poor (75% or<br />
• Examinations Facilities.<br />
• Funding and Financial<br />
Assistance.<br />
• Inclusive Education.<br />
• Legislation.<br />
• Teaching Strategies.<br />
Contact:<br />
Address: PO Box 30, East Hall,<br />
UCD, Carysfort, Blackrock, Co<br />
Dublin<br />
Tel. No.: (01) 7164396<br />
FAX No.: (01) 7164398<br />
11<br />
below) score.<br />
HYGIENE AUDIT RESULTS<br />
Email Address: ahead@ahead.ie<br />
Web Site: www.ahead.ie<br />
Many thanks to AHEAD for permission<br />
to use the information<br />
available on their site.<br />
If you are planning to attend any<br />
college for the first time a look<br />
through this website is strongly<br />
recommended.<br />
How clean is your hospital?<br />
How has your hospital fared in the second hospital<br />
hygiene audit? See the table below:<br />
We have included only those hospitals in Ireland<br />
which have CF Clinics. The full list of hospitals can<br />
be found on the HSE website<br />
http://www.hse.ie/en/NewsEvents/News/
ITALIAN CONNECTION<br />
Mothers, who would have them? The nagging that<br />
goes on is unreal, particularly when it comes to<br />
holidaying.<br />
Yes mother, I have the blue European Medical card.<br />
Yes, I have the number of my VHI on that yellow<br />
post-it you got laminated. Yes, I remember how to<br />
use an ATM machine. I am bringing the travel nebuliser.<br />
There is no way in hell the other big white yoke<br />
is coming <strong>with</strong> me! Insurance, err, nooo. Why would<br />
I need it? I've all the other stuff. Will I have room for<br />
Ciproxin in my hand luggage you say? Well, considering<br />
medicine is all that's in it, why the hell not?<br />
Jeez.<br />
LESSON ONE: Listen to mother.<br />
That first conversation came back to me as I stumbled<br />
headfirst into a pizzeria in Florence. I'm sure<br />
they thought I was on drugs (no, not the cf kind!). As<br />
an incomprehensible language suffocated my ears I<br />
recalled the conversation my Mom and I had before<br />
I left. Ah, mothers. How quickly their ten minute call<br />
to the insurance company while you're deliberating<br />
over shorts, skirts and flip flops turns them into Life<br />
Saving Mothers. The last thing Mom asked me<br />
before I set off to the 38 degree of Florence was if I<br />
had printed out the insurance. And as all daughters<br />
have the gift of doing; I smiled sweetly, kissed her on<br />
the cheek and in a much lower voice drawled "of<br />
course", as if she were the stupid one. Leaving for<br />
the airport at the furthest point of my mind there was<br />
a mental note pinned - find internet café, print out<br />
insurance.<br />
Ten days later after the most precise medical compliance<br />
I had ever followed in my life I booked into a<br />
well air-conditioned hotel alone. It was superior to<br />
where I had been staying <strong>with</strong> my colleagues and I<br />
was in complete desperation. I knew something was<br />
wrong. It's really hard to explain but although I knew<br />
I was unwell I hadn't realised it was so bad until<br />
then. It's at this time that I took a stroll, or rather fall,<br />
into that Pizzeria. Imagine walking around the spire<br />
four times and that was roughly the distance from<br />
my hotel to the pizzeria... In there my drunken staggering<br />
caused a big scene and I left the place in a<br />
bigger muddle. Sure, I'd thought about drinking a<br />
fifth litre of water, but that diet coke was just so<br />
12<br />
By Orla Tinsley<br />
much more appealing. However, according to U.S.<br />
researchers the aspartame in it encourages dehydration,<br />
which in my defence I did not know! Before<br />
long they were hauling me through Florence in an<br />
ambulance <strong>with</strong> my excellent Italian friend. It was an<br />
experience.<br />
LESSON TWO: Inform your travelling party about<br />
your condition & warning signs they need to look out<br />
for (and not when you're being carted away by that<br />
ambulance..).<br />
Stay hydrated and make other travellers aware, or at<br />
least one. I appreciated their help much more than<br />
the gutter I would have ended up in. Being that<br />
dehydrated left me at serious risk of heart attack<br />
which in turn affected my chest and diabetes, which<br />
caused minor respiratory failure. I knew no Italian<br />
but luckily enough I had a remarkably calm Italian<br />
friend to translate for me and stay <strong>with</strong> me, but he<br />
couldn't stay during procedures. Yes, those ten minutes<br />
where an inexperienced nurse rammed a giant<br />
nail, sorry needle, into my fragile portacath and continued<br />
to bang it <strong>with</strong> her big Italian momma hand<br />
were priceless. If in doubt, ask for the anaesthetist,<br />
or alternatively, don't travel. Which is the exact<br />
advice that charming lady proposed when she bellowed<br />
- "Why you go on holiday if you know you<br />
have this illness?!" Trust her to be able to string an<br />
insult together yet not speak any other English to<br />
me. Her temperament made me cry a little and beg<br />
<strong>with</strong> praying hands and rocking body for my translator.<br />
It sounds pathetic but my port felt painful and<br />
broken. Her reply was to loom over me, her toothless<br />
gob grinning as she brandished a syringe full of<br />
sedation. Before long I had grabbed it, my fist waving<br />
it at her and the two assistant nurses who had<br />
been stroking my brow and sighing "tranquille" in a<br />
creepily holy vibe and who were now holding me<br />
down in a bid to restrain me. Note to self - easier<br />
option, drink and bring salt supplements. Tell friends<br />
warning signs; listen to mother and bring neb that<br />
does Tobi.<br />
LESSON THREE: The importance of having holiday<br />
insurance.<br />
After a night in a high dependency unit (HDU) I finally<br />
got moved to the CF unit. A real CF unit. Own
oom, en-suite etc., heaven. After five days my Mom<br />
flew over and contacted the insurance company<br />
immediately. That eighty euro extra we had paid<br />
was now paying for both our flights home whenever<br />
I was fit, and a nurse and oxygen if I needed it, also<br />
wheelchair assistance from check-in to terminal.<br />
However, that turned out to be a bit of a mess, as<br />
were the insurance company. Adamant that I told<br />
them I wanted to fly from Rome, (although I was in<br />
a Florence hospital) they initially searched for the<br />
wrong flights. It took a great many phone calls on<br />
my Mom’s part to organise our flight. We must have<br />
communicated <strong>with</strong> at least seven different people<br />
in the insurance company but finally when the<br />
Doctors gave clearance we were out of there <strong>with</strong>in<br />
twenty-four hours <strong>with</strong> Ryanair. To fly <strong>with</strong> anyone<br />
else such as Aer Lingus or Lufthansa we would have<br />
had to wait a little longer as they need 24 hour clearance<br />
before allowing you on a flight. The airport<br />
people messed up <strong>with</strong> the wheelchair and I ended<br />
up being walked to my flight <strong>with</strong> two first aid men.<br />
It was really ridiculous. The insurance companies<br />
promised-taxi failed to be there when we landed<br />
however we found our own and headed straight for<br />
Vincent's - who were superb during all of this, liaising<br />
<strong>with</strong> the various hospitals. For once I was happy<br />
to see the place.<br />
Really, when you think about it paying eighty euro<br />
once-off for a two week holiday got me so much,<br />
including our flight home. If you keep receipts of<br />
hotels, expenses & records of phone calls you can<br />
claim most of it back. The problem I had, and that<br />
most people have is that you just don't think it will<br />
happen to you. As corny as it sounds this experience<br />
really shows that it can and does happen. No<br />
matter how disorganised the insurance idiots are -<br />
pay for insurance and insurance pays back. For<br />
flights, for phone credit and for your own safety...<br />
FF can’t empahsise enough just how important it is<br />
to have adequate cover when you travel abroad. It<br />
CAN happen to anyone, especially in hot countries<br />
where you might not realise you are getting dehydrated.<br />
Insure yourself and be certain you are covered<br />
for flights home and nursing care if required.<br />
The European Health Insurance Card (the old E11)<br />
only entitles you to the state-funded health care<br />
scheme in the country in which you are staying. It<br />
will not cover any of the costs involved in transporting<br />
you back to Ireland. (see webwatch for more)<br />
13<br />
NATIONAL CONFERENCE<br />
By Patricia Duffy<br />
The PWCF talk at this year’s CFAI Annual<br />
Conference, Portmarnock, Dublin is dedicated to<br />
the hardworking partners of pwcf everywhere!<br />
Improved management of CF has lead to an<br />
increased life expectancy of people <strong>with</strong> CF. The<br />
CF Registry of Ireland currently shows a 58/42 %<br />
split of paediatric pwcf versus adult pwcf. The adult<br />
population is set to outnumber the paediatric population<br />
by 2010 - there' no stopping us!<br />
This is great news. At the same time, it's a journey<br />
to unfamiliar places. Somewhere along the line,<br />
probably in our teens, a light bulb turned on - and<br />
the realisation that we have a chronic condition,<br />
sunk in. This revelation inspired us to learn to manage<br />
ourselves, to do our physio, to take our medications<br />
& our nebulisers and to recognise when we<br />
had chest infections requiring more intense IV<br />
antibiotic treatment.<br />
Our determination to get on <strong>with</strong> life and to manage<br />
our condition as much as our health allows us<br />
makes us stubborn. Stubborn to accomplish independence;<br />
for many people <strong>with</strong> CF it is a fundamental<br />
ambition to prove to ourselves that CF does<br />
not manage us, and that CF needn't dictate our<br />
identity.<br />
Many of us will meet life-long partners along the<br />
way. There are many physical, psychological and<br />
emotional challenges to us meeting a partner in the<br />
first instance (it's well known there are not enough<br />
eligible men in Dublin!!!), but seriously, linking up<br />
<strong>with</strong> someone brings a whole new set of hurdles for<br />
us to cross. We are suddenly faced <strong>with</strong> the challenge<br />
of letting a partner into our lives...<br />
This is likely to be a slow process starting <strong>with</strong> simple<br />
milestones such as admitting that it's not just "a<br />
bit of a cold" or "a touch of asthma" & that's not a<br />
pack of cigarettes in your pocket; it's your enzyme<br />
case & you don't smoke. When you've got that bit<br />
closer you feel brave enough to show your port-acath<br />
scar or your knobbly fingernails or whatever!
NATIONAL CONFERENCE<br />
In the long run, it will mean introducing someone to<br />
the nitty gritty of life <strong>with</strong> CF. The tedium of the routine.....<br />
the highs and the lows. Your partner may<br />
want to do everything for you, to help <strong>with</strong> your medications<br />
and your physio. You may not want your<br />
partner to see you doing your physio at first - it is a<br />
hugely personal activity. Over time your partner will<br />
become involved <strong>with</strong> your daily treatment regime,<br />
they'll become the one to 'gently encourage' you to<br />
get out for a walk & exercise, or get your physio<br />
done. Further down the road, as trust grows, you<br />
may wish to share activities such as going on holidays<br />
together or arrange for your partner to collect<br />
your medicines from the pharmacy, or even prepare<br />
your colomycin (as long as they don't have an irrational<br />
fear of syringes!).<br />
Now, more than ever, people are extending their primary<br />
care giver pool to their partners, husbands or<br />
wives. As commitments are made the "circle of trust"<br />
widens. This brings <strong>with</strong> it a transition of next of kin<br />
duties & responsibilities to these people - a major<br />
shift in the support network. Your family will be less<br />
involved than you in previous episodes. As your next<br />
of kin, your partner should be there for you whenever<br />
they are needed, and it will be your partner you<br />
will turn to for the support you need to help keep you<br />
going. So on reflection, communication of your<br />
diagnosis to your partner becomes the new memorable<br />
event in having CF, and a milestone in a budding<br />
relationship.<br />
For some couples, despite sharing the care, there<br />
can be a lack of openness about how each one is<br />
feeling, for fear of worrying the other partner. But<br />
when commitment has been made on both sides, at<br />
a certain stage in a relationship, its probably safe to<br />
say your partner has accepted your condition and<br />
has made a life choice to support you through thick<br />
and thin.<br />
As they would be for any couple, healthy or otherwise,<br />
the momentous events such as moving in<br />
together, buying a house, marriage and starting a<br />
family are life changing but living <strong>with</strong> CF can throw<br />
in a few extra challenges.<br />
Would we be able to apply for a mortgage?<br />
Could we have children?<br />
Would we be able to afford them the loving and caring<br />
they deserve?<br />
The answer to all of the above questions is "Why<br />
not?"<br />
14<br />
Adult CF brings a range of health issues affecting<br />
the couple as a unit. The CF teams appear to have<br />
embraced this and are acknowledging the importance<br />
of including the partner in important discussions.<br />
Some couples may need to face making decisions<br />
together about a transplant. The transplant<br />
facilities in the UK provide accommodation for partners<br />
to stay at various parts of the process. It's welcoming<br />
to see how the partner is supported at all<br />
steps and plays a central, pivotal role. During IVF<br />
and ICSI treatment, peoplw <strong>with</strong> CF have written<br />
that they are comforted by the emphasis placed on<br />
support for the couple throughout the process.<br />
Given that the partner is now taking on a significant<br />
role in supporting the person <strong>with</strong> CF - what are their<br />
thoughts? How difficult is it to live <strong>with</strong> CF through<br />
the bad times as well as the good… when it's not<br />
your own? To make it through both the daily grind<br />
and the big issues, it is essential to them that they<br />
know what support to give. Around the world, CF<br />
websites display messages and comments made by<br />
partners of pwcf; it's clear to see that they share<br />
similar concerns as our parents did for us when we<br />
were younger….. does that cough sound different, is<br />
treatment working, will they need iv’s soon, is the iv<br />
working, are they eating enough, getting enough<br />
rest and exercise, and some different questions -<br />
how will life be different after transplant, concern<br />
about carrier testing .....The CF Association has a<br />
section on the community forum where partners can<br />
air their issues and get support from others.<br />
Partners need to be encouraged to contribute to the<br />
Association in any way they can, to ensure that the<br />
needs of pwcf are fully represented. Living <strong>with</strong> CF<br />
when it's not your own gives you a fresh perspective<br />
on the ups and downs, the ins and outs. Their experience<br />
and their awareness of our needs is an<br />
untapped resource.<br />
As we've grown up, we've started campaigning for<br />
ourselves and now we invite our partners to join in<br />
the effort. A shift in emphasis away from the traditional<br />
family orientated around the PWCF, towards a<br />
person <strong>with</strong> CF plus partner at the head of their own<br />
family, is needed.<br />
Something to reflect on...<br />
Take another look at the CFAI<br />
logo; can you now tell which<br />
one of them has CF?
A new advocacy working group is now in place in St.<br />
Vincent's University Hospital (SVUH). It is a huge<br />
step forward that people <strong>with</strong> CF (PWCF) are now sitting<br />
around the table <strong>with</strong> the CF team and hospital<br />
administration and that communication has commenced.<br />
It is a stepping stone for both parties, <strong>with</strong><br />
equal respect and open communication. We hope that<br />
as these meetings progress, we will find positive action<br />
and responses from everyone.<br />
In attendance at the meeting held on 17th July 2006<br />
were PWCF, representatives from ward nursing staff,<br />
CF nurse specialists, physiotherapy, counselling,<br />
administration & consultants.<br />
The format for the meeting involved the PWCF bringing<br />
all complaints, issues and concerns that have been<br />
reported to CF House & to PWCF representatives to<br />
the attention of both the members of the CF team and<br />
the hospital administration. No names are given in the<br />
meeting as all complaints are treated <strong>with</strong> the utmost<br />
confidentiality.<br />
As this process is a two-way transition the CF team<br />
were also given the opportunity to comment on ways<br />
PWCF could help improve efficiency of treatment.<br />
An Action Log is to be collated at the close of each<br />
meeting which should ensure that people follow up on<br />
the issues raised.<br />
Overall the meeting was frustrating - the hospital staff<br />
could not comment on either the building of a new unit<br />
or the provision of interim infrastructural measures for<br />
Issues raised by PWCF/Actions<br />
# St Paul's ward refurbishments:<br />
Impossible to schedule at the moment <strong>with</strong><br />
A&E bed demands as it would mean closure<br />
for a few weeks.<br />
# St Paul's refurbishment of<br />
shower/bathroom/toilets: There are no<br />
plans to redevelop or improve these facilities.<br />
# Flowers/plants as infection risks:<br />
Wards <strong>with</strong> CF patients will be asked to<br />
remove plants and flowers.<br />
# Smoking in hospital wards & around<br />
hospital entrances, affecting the physio<br />
room: Alternative smoking area to be<br />
made available for smokers.<br />
# Shortage of disabled parking spaces:<br />
Other patient groups don't have special<br />
parking arrangements & none will be made<br />
for PWCF.<br />
# Car parking costs: No action logged.<br />
# Outpatients infection risks: Should<br />
improve <strong>with</strong> the move to the new building.<br />
# In-patient infection risks/cross-infection<br />
& MRSA exposure: Azowipes to be<br />
made available in toilets.<br />
# A&E waiting times/admission procedures;<br />
bed shortage & bed management<br />
issues: No action logged<br />
# Staff training issues i.e. skipped<br />
doses, IV's given late; not flushing<br />
between drugs: Staff training to be organised<br />
in St. Paul's Ward and other wards in<br />
the hospital.<br />
# Delays <strong>with</strong> letters to attend CF related<br />
functions: Advice from team: people<br />
can help the process by not leaving samples<br />
in on a Friday evening; where possible<br />
any morning is the best time. Have<br />
name/hospital number and all relevant<br />
details on samples & include copy of<br />
15<br />
PATIENT LIAISON GROUP<br />
St Paul’s ward as this does not fall under their remit.<br />
We have heard subsequent to this meeting that the<br />
hospital has commissioned a firm of architects to draft<br />
specifications for a new CF unit that will be submitted<br />
to the HSE. On a positive note there has been a commitment<br />
to increase staffing levels consisting of a new<br />
consultant and ward clerk. Since our meeting, letters<br />
concerning the allocation of further CF personnel to<br />
specific hospitals across the country has been sent out<br />
by the HSE as part of the additional budget allocation<br />
to CF services for 2006.<br />
St. Vincents team highlighted ways in which we can<br />
help them as listed below. FF appreciates that the<br />
majority of people already operate <strong>with</strong> due consideration<br />
to the team however, there may be some individuals<br />
who don’t. At the end of the day any improvement<br />
in the the efficiency of service provided can only benefit<br />
us all.<br />
The pressure has to be put on the HSE until proper<br />
facilities are in place for PWCF as they are the people<br />
<strong>with</strong> the power to change it and not the CF Team. We<br />
all recognise that the team, staff and administration are<br />
always most helpful & do their best under the<br />
resources and restrictions in situ, to follow up on any<br />
complaints or problems for patients.<br />
Meetings will be held quarterly - the next one is on the<br />
20th Oct 2006. Please continue to send all complaints<br />
in writing to CF House. Each one will be brought to the<br />
table for discussion. If we keep complaining about<br />
these issues we will be able to monitor the success or<br />
otherwise of these meetings & decide on future action.<br />
required letter.<br />
# Dietary requirements: More snacks to<br />
be made available for CF patients.<br />
Issues raised by CF team<br />
# Arrive to appointments on time. Ring in<br />
advance if you're not going to make it. The<br />
outpatient clinic has moved to the new<br />
building & appointment times will be<br />
stricter than previously.<br />
# Arrive to home IV treatment review on<br />
time and ring in advance if you are not<br />
going to make it.<br />
# Any patient coming into hospital should<br />
arrange to have their car collected and not<br />
take up a space for the duration of their<br />
stay.<br />
# Reduce clutter around bed to allow<br />
space for cleaning of floors etc.<br />
# Patients to bring in own respiratory<br />
equipment when in hospital.
AUTOGENIC DRAINAGE<br />
The importance of continuous and consistent daily<br />
physiotherapy cannot be over emphasised, as stated<br />
by the Annual Report 2005 of the <strong>Cystic</strong> <strong>Fibrosis</strong><br />
Registry of Ireland. However, physiotherapy is often<br />
not prioritised in many CF patients daily routine and<br />
by this I am referring to Airway Clearance. Many<br />
patients will quite gladly go for a walk, or a run if they<br />
are able, yet airway clearance for some can be more<br />
of a challenge. We in St. Vincent's Hospital understand<br />
and appreciate the time constraints on many<br />
of our patients lives e.g.: studies, careers, families<br />
etc, which is why we always try to tailor airway<br />
clearance specifically for each individual patient.<br />
Autogenic Drainage (AD) is an airway clearance<br />
technique that many of our patients find very effective<br />
and efficient. This article will hopefully encourage<br />
more patients to use this simple technique to<br />
clear more secretions, <strong>with</strong> less stress to the airways.<br />
Here's the science:<br />
AD is a technique based on the physiology of<br />
breathing. It is not the classic "tipping" that occurs in<br />
paediatric and, sometimes, adult centres. Expiratory<br />
flow, that is, the speed at which you breathe out, is<br />
the active force that is used to mobilise the sputum.<br />
(Jean Chevallier, 2002)<br />
As you are sitting there now, you are breathing at<br />
what we call Tidal Volume. You are taking relatively<br />
relaxed breaths in and out (Between the 2 red lines<br />
on the diagram).<br />
When you take a deep breath in, you inhale into your<br />
Inspiratory Reserve (Up to the top blue line)<br />
When you breathe out firmly, you exhale into your<br />
Expiratory Reserve (The green line on the diagram).<br />
Even if you huff/breathe out as much air as you possibly<br />
can, you will still have some air left in your<br />
lungs - this is what keeps your lungs inflated and<br />
prevents them from collapsing. This is called your<br />
Residual Volume (between the green and blue<br />
lines).<br />
One of the most important aspects of any breathing<br />
technique, including AD and ACBT (Active Cycle of<br />
Breathing Technique) is the Breath Hold. Imagine<br />
16<br />
By Aoibheann Leeney and Hope Fisher<br />
you are going swimming - you take a deep breath<br />
and you hold that breath as you go under the water.<br />
To do this, a flap of tissue at the top of your throat<br />
(glottis) closes over your windpipe to prevent any<br />
water that might get into your mouth while submerged<br />
going down your windpipe into your lungs.<br />
Now, the important thing while doing AD is NOT to<br />
do this!! As you take a deep breath in, hold your<br />
mouth and throat open - you should feel a little extra<br />
air going into your lungs <strong>with</strong>out you actually actively<br />
trying to inhale it. This is happening as extra airways<br />
are being recruited (opened up), and air is getting<br />
in behind plugs of sputum that might be closing<br />
off some smaller airways. As you breathe out, you<br />
shouldn't hear a big sigh, instead you should hear a<br />
firm, continuous breath out. (Think about when you<br />
hold your breathe under water and come up gasping<br />
for air - don't do that!!). The breath in, the breathhold<br />
and the breath out should be smooth and<br />
almost flow as one (poetic as it might sound!)<br />
So, now you have read about the basics, here's how<br />
its done: (See Diagram)<br />
o Take a few deep breaths to prepare, slowly breathing<br />
in and out<br />
o On the last deep breath, hold for 2-3 seconds,<br />
then breathe out gently but firmly, as far as you can,<br />
<strong>with</strong> enough force so that you can hear your secretions<br />
crackling.<br />
o Take a small breath in (low lung volume), hold for<br />
2-3 seconds, then breathe out, again so that you can<br />
hear your secretions.<br />
o Repeat this as many times as is necessary for you<br />
to either:<br />
1. Feel your secretions start to collect or<br />
2. Hear you breath become more coarse, thus<br />
changing from a crackle to a rattle or<br />
3. Both<br />
o At this stage, you can now move up to a medium<br />
size breath in (medium lung volume). Do this gently,<br />
so that you do not move the secretions you have<br />
worked so hard to move up from the small airways,<br />
back down <strong>with</strong> the force of your larger in-breath.<br />
Hold the breath for 2-3 seconds, then breathe out<br />
firmly. It is important to note here that you do not
eathe out as far as you have done <strong>with</strong> the small<br />
breaths.<br />
o Repeat this as many times as is necessary for you<br />
to hear or feel a change in your secretions/breath out<br />
respectively.<br />
o Next, you can move up to taking a deep breath in<br />
(large lung volume). Again, "gentle" <strong>with</strong> the breath<br />
in and firm <strong>with</strong> the breath out.<br />
The purpose of mobilising the secretions up from the<br />
small airways to the larger airways is that it helps to<br />
collect the secretions as you move up from the small<br />
breaths/lung volumes through to the deep<br />
breaths/large lung volumes. Larger amounts of<br />
secretions means more effective clearance in a<br />
shorter length of time, <strong>with</strong> less exhaustive coughing,<br />
which if you are all honest <strong>with</strong> yourselves, is<br />
one of the most tiring parts of trying to clear your<br />
secretions!!<br />
With AD, some patients can actually clear secretions<br />
into their mouths, and do not need to cough at all!!<br />
Less coughing also means you are protecting your<br />
windpipe, minimising further damage from the years<br />
of coughing you have already been doing!! You may<br />
find that you can hear lots of secretions while you<br />
are performing a cycle of AD, but when it comes to<br />
the cough, you can't expectorate any secretions. If<br />
this is so, persevere <strong>with</strong> the firm breaths to move<br />
the secretions a little higher towards your mouth.<br />
Also, try using a little more force, for a little longer, or<br />
a little shorter and faster. However what you really<br />
17<br />
AUTOGENIC DRAINAGE<br />
do NOT want to hear is a loud wheeze, or sometimes<br />
almost a "bark".<br />
In addition to doing AD, it is important to co-ordinate<br />
your airway clearance session <strong>with</strong> your bronchodilators,<br />
if you are taking them. Approximately 20<br />
minutes after your short-acting bronchodilators is<br />
the best time to do your AD (If you feel like going for<br />
a short walk after the bronchodilator, this will maximise<br />
you AD session!)<br />
I would strongly advise that you do not try to teach<br />
yourself this technique. If you would like to learn it as<br />
a new Airway Clearance Technique, contact your<br />
local CF centre. Alternatively, please feel free to contact<br />
the <strong>Cystic</strong> <strong>Fibrosis</strong> Physiotherapists in the<br />
National Referral Centre, St. Vincent’s University<br />
Hospital, Elm Park, Dublin 4. We will be more than<br />
happy to teach you!!<br />
(I'm enthusiastic, can you tell?!?!?!)<br />
PWCF Comments:<br />
Grace Sheehan: AD enables you to be productive<br />
<strong>with</strong>out the tiresome effort of repeated coughing.<br />
Although holding back "the cough" requires a lot of<br />
control, the airway clearance you achieve is worth<br />
the effort.<br />
Orla Tinsley: I find AD an excellent form of physio<br />
as it encourages independence, <strong>with</strong>out pepmask<br />
etc., and can be practised everywhere. It also<br />
requires a high level of concentration & focus which<br />
can translate to other areas of life.
18<br />
Artwork by Nathan Swan