E-INTERVIEW with Michael Cunningham - Cystic Fibrosis ...

AUTUMN 2006
Future Force
MAGAZINE OF THE CYSTIC FIBROSIS ASSOCIATION ASSOCIATION
OF IRELAND
by pwcf for pwcf
language bias
patient liaison group

CONTENTS
Introduction ............................................................ 1
Editorial - Jean Byrne
E-Interview .............................................................. 2
An upcoming singer/songwriter - Michael Cunningham
chats with Eleanor Walsh
Web Watch ............................................................... 3
The Health Service Executive is under the microscope
Snip Snip .................................................................. 4
Standing up for the male members
Nathan Swan
29th European CF Conference ............................... 5
From the city with character & charm, Copenhagan
Carol Brady
What Ails Ye ............................................................. 7
Smoking is “banned” in the hospital environment.
Jean Byrne
Photo Gallery .......................................................... 8
CFAI Annual Conference, Portmarnock, Dublin
Removing the language bias ................................. 9
Why do you see our disability first?
Tom King
AHEAD ...................................................................... 10
Association for higher level education access & disability
2 nd Hospital Hygiene Audit Results ...................... 11
How clean is your hospital?
Italian Connection .................................................... 12
The importance of having holiday insurance.
Orla Tinsley
Silent Partner ........................................................... 13
The PWCF talk from this year’s CFAI conference
Patricia Duffy
Patient Liaison Group .............................................. 15
It’s good to talk; you have a voice in St. Vincent’s hospital
Autogenic Drainage ................................................. 16
Find out why people are switching to this simple airway
clearance technique.
Aoibheann Leeney & Hope Fisher
Vinny ......................................................................... 18
Overheard conversations
pg 7
pg 11
pg 4
pg 10
pg 5

H
ello friends! FF fame is spreading - a recent
issue fell into the lap of none other than new
consultant in St. Vincent's, Dr. Ed McKone… given
to him by one of his ex-pat patients while he was
still working in Seattle… that's the USA - we agree,
it's a great story! Our mag. committee's chests are
puffed out in pride!
Yet another experience that makes us proud was a
comment made by a non-CF patient on a ward,
who remarked that ours was the only consultant
she ever saw washing his hands after he was with
his patient. We're not saying that other consultants
don't do it but transparency plays a big part in confidence
in the health system… and the CF team in
St. Vincent's is leading the way.
What with the hot weather in conjunction with the
smoking ban it is becoming nigh on impossible to
find a smoke-free zone in which to lap up the rays
- see our featured "What Ails Ye?" Plus… Nathan
gets snippy, standing up for the male member…
while Carol gives us her pick of the European CF
Conference from Denmark… and in best Ross
O'Carroll-Kelly fashion we just have to say, "Oh My
God, roysh, you just have to listen to this new
singer goy we've, like, "discovered"… he's so Kool
& the Gang!"
Mary Harney was caught once again by one of
those dastardly young pwcf who keep popping up
at the most inopportune moments (for Mary) &
demanding a new CF Unit… well done Denise
Saul! However, there's a new way to get your opinions
across to St. Vincent's management with the
set-up of the Patient Liaison Group. Ciaran Bohan
& Rory Tallon will meet regularly with the CF team
& hospital administration in St. Vincent's; a summary
of their first meeting is inside. Staying with
the hospital theme, we've included a summary of
the National Hospital Hygiene Audit.
Thinking about college courses? Our article on
AHEAD is a must-read. Lots of solid advice; very
useful tips on how to deal with third level & improve
ones study skills.
Mamma mia, Orla will never forget her visit to
Florence during the summer… two words for you
Orla - salt tablets! Everybody's raving about AD,
1
INTRODUCTION
no, not a cute newbie intern (that would be PJ!), its
Autogenic Drainage… but I'm sure y'all knew that
anyway. And of course Vinny is back! We've
hooked a fabulous artist who has agreed to translate
all of our weird & wonderful ramblings (side
effects of the IV's, no doubt) into a sensible comic
strip just for you… yes, you out there!
Here follows the usual plea for articles, ideas &
complaints … we need you to keep Vinny alive,
give us plots, sub-plots, dialogue & direction for
him! Send all to the addresses below… we'll even
accept pigeons!
SEND ALL LETTERS/ARTICLES TO
The Magazine Group
Future Force
CF House
24 Lower Rathmines Rd.
Rathmines
Dublin 6
Email: futureforcemag@hotmail.com
CREDITS
Future Force is the property of:
The Cystic Fibrosis Association of Ireland,
CF House,
24 Lower Rathmines Road,
Dublin 6
Tel: 01-4962433 Fax: 01-4962201
Lo-call: 1890-311-211
EDITING STAFF
Jean Byrne Patricia Duffy
DESIGN
Jean Byrne
MAGAZINE COMMITTEE
Rory Tallon, Eleanor Walsh
Olivia Coen, Daragh McGrath
PHOTOGRAPHS
Carol Burchael
ORIGINAL ARTWORK
Nathan Swan
The views and opinions expressed in this
magazine are not necessarily the views of
The Cystic Fibrosis Association of Ireland.

E-INTERVIEW
E-INTERVIEW with Michael Cunningham
A new up & coming singer/songwriter!
Michael Cunningham is a new up and coming
singer/songwriter who hails from Co. Kildare.
Currently he is living and working in Co. Kerry.
Recently, Future Force caught up with him!!
FF: So, tell us a little about yourself.
Michael: Well, I'm in my 32nd year (!), have 2
brothers and a sister and live in Killorglin with my wife
Terry. We got married in South Africa last October,
Terry is from there but I was born in Athy, Co. Kildare
and moved to Kerry when I was 13. I work from home
so it's great that I can stay in Kerry and not have to live
in a big city - been there, done that! I went to College
in Cork and then Dublin and also spent a year in
London a few years back. I love to travel and have
been to Australia and the USA a few times. Obviously
spent some time in South Africa too! I enjoy water-skiing
(in the summer!), walking and of course, music
which I had always toyed with as a disgruntled teenager!
FF: When did you start your involvement in
music?
Mike: I had always toyed with songs and when I was
living in London I was listening to BBC London and a
girl called Alice Martineau was being interviewed. She
had just recorded a CD of her own material with Sony
music and mentioned that she had CF and all the while
was waiting for a lung transplant. I decided then to find
a small studio in London and record a few tracks and
maybe one of my own and was going to do it on my
birthday, March 6th. The day I went into the studio,
Alice died while awaiting her transplant and the same
day, a friend of mine who had been on the transplant
list went in to have it done.
I recorded a few covers and one of my own, 'November
Day'. The recording itself wasn't great but the feedback
2
I got from people was good enough for me to move
home and take some time off to record a few more. The
result of that was a 5 track demo I recorded in Kerry. I
sent one to Christy Moore and Jack L, two people
whose music I greatly enjoy, and they both called me
to say they had enjoyed it which I was pretty chuffed
with as you can imagine!!
FF: Tell us about your gigs to date and which
you enjoyed the most.
Mike: I haven't really gigged much as such. I sang at
my sister's wedding and at my own and here and there
but nothing really other than that! I hope to do some
gigs this summer to promote the new CD I am currently
working on. I am doing a full 10 track CD of my own
songs with no holes barred... no more demos! I played
support to Jack L in the Granary in Cork a year or so
ago which happened to be the same day that Billy
Burke, whom I was in school with, died while waiting for
his transplant. I was asked to sing at a rally for Billy
shortly before he passed, which I was proud to do as it
was an important cause. It was to protest that all the
donor organs from Ireland only go to one hospital in the
UK for transplants and Billy happened to be on the list
at another hospital. I still can't believe that the minister
for health refused to move on it at the time. Why do we
put these people in power if not to act on our behalf?
FF: Where do you get the inspiration for your
songs?
Mike: I don't really know. I had been thinking about
that and a while back I was watching a documentary
with U2 talking about song writing and Bono said that
the songs are already out there somewhere and that
the person writing is like a filter and the songs just are
filtered through them. I liked that idea. I often try to sit
down and write a 'funny song' or a 'story-type' song but
I can't seem to do that. I just fiddle with the guitar until
I find something I like and then write what comes to me
in a kind of stream of consciousness kind of way and
hope for the best! Although I wrote a song called 'The
boy at the window' about CF so it seems sometimes I
can focus!
FF: Which song are you most proud of and
why?
Mike: Definitely 'The boy at the window'. At home
when we were young, we had a CF collection box that
we would have to put 10p in when we were bold or

whatever (lost a fortune that way!) and there was a picture
of a small boy looking out a window and his
expression always haunted me. He looked sad having
to stay in doors while all the other kids were out playing.
The caption on the collection box was 'The boy at
the window' so I wrote a song about how I thought he
must have been feeling and how I often felt as a
youngster.
FF: What other interests do you have?
Mike: My parents live near the sea in Kerry in a place
called Dooks so I spend a lot of time there. I have
always loved the sea (after I recovered from seeing
Jaws for the first time!) and enjoy skiing and larking
about in the ocean. I enjoy walking and exploring in the
country and going to concerts. I'm a big Billy Joel fan.
He has about 20 albums and there isn't a song on one
that I don't like. I read a lot of books too, mainly biographies
or fact based books.
Quick Fire Questions...
FF:: McDonalds or Burger King?
Mike:: Burger King by far.
FF:: Book or DVD?
Mike:: DVD is easier but the book is often superior so
depends on the mood!
FF:: Green Day or Radiohead?
Mike:: I’d go for Green Day.
FF:: Man United or Liverpool?
Mike :: As football teams? No idea... to visit?
Manchester.
Eleanor:: Thank you very much for taking the time to do
this interview, Michael. On behalf of Future Force I
would like to wish you all the best with your music
career!! To find out more about Mike or get his demo
EP go to www.michaelcunninghammusic.com
Ed’s note: A few of us at FF have listened to some of
Michaels songs & his debut EP can be described as a
moving, melancholic collection with a touch of Jack L,
a hint of the Rat Pack & subtle U2 undertones. The
consensus... we loved it and can only wait for his debut
album to make number 1.
3
www.hse.ie
WEB WATCH
The Health Service Executive (HSE) is the single
body responsible for ensuring that everybody can
access cost effective and consistently high quality
health and personal social services. It replaces the
old health boards, the newer regional health authorities
plus a number of other different agencies and
organisations. On the HSE website you will find all
the latest press releases from the HSE, along with
news about special events and health related conferences.
Look through a wide range of publications
on health issues and developments & read the latest
report on the new National Children's Hospital.
Enter your details in the online calculator to check
your eligibility for a GP Visit Card and Medical Card.
Application forms for various services are available
for download. And... an A&E activity table is updated
daily showing the numbers of people waiting for
beds & lists the HSE near-term admission targets…
(worth printing out & laminating!)
www.oasis.gov.ie
EB ATCH
www.oasis.gov.ie/moving_country/moving_abroad/
e111.html
A very useful website for all sorts of services and
entitlements. This time we’re looking at The
European Health Insurance Card. This card
replaced the old E111 form and a number of other
'E' forms. Information covered on the site includes
1. Rules 2. Rates 3. How to apply & 4. Where to
apply. Like the old E111, the European Health
Insurance Card only entitles you to the state-funded
health care scheme in the country in which you are
staying. It will not cover any of the costs involved in
transporting you back to Ireland. The card is valid
for 2 years. There is no fee for the Card. You may
apply online or you can download an application
form. Complete the form and return it to your Local
Health Office at least 1 month before you leave
Ireland.

SNIP SNIP
As we know Cystic Fibrosis can come with a series of
problems: ranging from the more common problems,
such as chest infections, diabetes, even epilepsy in
some cases; not to mention the lesser problems like
having fat drumstick fingers and a chest like a pigeon.
But one thing I haven't read any articles on, but from
my understanding can affect more male PWCF than
may be willing to admit too is the possible need for circumcision.
Yes, sorry ladies and those of you who are easily
offended by the mentioning of the male member but
this is an article about penises, and the problems that
can arise from being born with one.
I'm going to start by guessing everyone knows what a
penis is? If not, well then tough luck because it isn't my
place to explain the birds and the bees. I'm going to
take you back a few years to when I was a child and I
was learning to use the bathroom. One thing most kids
learn as they get older is to pull their foreskin back
from their penises; it's perfectly natural and a part of
life, I on the other hand never learned to do this, why,
you may ask?
Well it's not like I'm a complete and utter idiot, it's just
that quite simply I couldn't pull back my foreskin without
tearing the skin and causing myself to bleed. So I
just simply didn't pull back my foreskin at all. This, in
later years became a problem as I started to grow and
mature.
Sex was just as fun as it should be; the only time things
wouldn't go to plan would be when my partner would
ask me why I didn't pull back my foreskin, a bit embarrassing
yes but I learned a trick; turning off the lights.
But enough of my misspent youth, I still didn't seek
help for my problem quite simply because I didn't
understand why I couldn't do what was so natural to
everyone else. A combination of embarrassment and
lack of knowledge, it wasn't till December 2004 that
one night myself and a friend with CF ended up talking
shop that I found out I wasn't alone when it came to the
problems I had been experiencing. I'm not a religious
man but HALLELUJAH.
It turned out that my fellow cystic didn't have as dire a
case as myself, but it was bad enough that after much
talking we decided that we would do something about
4
By Nathan Swan
it, we would say it to the medical team when we saw
them next, after all as we were both inpatients at the
time we had a cohort of doctors whose medical advice
we could call upon. So one day my friend swallowed
his pride and approached the senior house office
(SHO) who was on the CF team in Vincent's at the
time.
After explaining the delicate nature of the situation the
SHO, understanding that my friend would like this matter
to be kept quiet, gave my friend a tube of cansten
cream and explained why this was happening to him.
OK, here comes the science bit, the antibiotics which
we take to stave off chest infections can cause this
problem in both men and woman with CF. The skin
gets dried out and irritated by the remains of the antibiotics
we urinate out of our systems, the affected skin
becomes tight and dry causing it to split and bleed
when trying to retract the foreskin, this doesn't happen
to everyone but it can happen to a lot of people.
As soon as I learned this my first thought was I had
better get myself some cansten cream, so as the SHO
who my friend had approached was away I had to go
tell my tale to the Registrar on the CF team who just
happened to be a smoking hottie. I explained my situation
to her and she prescribed me some cansten
cream and told me the SHO would see me when he
got back of his holiday, also I was given an appointment
for a urology clinic.
From this point onwards my penis was quite literally in
someone else's hands! After seeing the urology team
a few times in clinic and while as an outpatient the urology
team gave me an ultimatum, either use cansten
cream periodically or I could opt for a circumcision.
Now you must understand one thing about me before
we can go on, I am the type of person who can take
hard decisions in his stride and yet spend hours deciding
what fillings I want in my sandwiches. I opted for
the circumcision straight away. After a year that
brought problems meaning I couldn't have the operation
done, I finally got the snip a week before my 23rd
birthday. The operation took longer than I thought it
would have. I was given an epidural instead of an
anaesthetic; this was very weird because I was awake
for the majority of the operation. I listened to the two
surgeons talking with one another as they plied their

trade. OK, here is a question for you, why is it every
time I'm awake having an operation done doctors
always talk about golf? It's weird.
I spent the time during the operation staring out of the
window that was to my right thinking what a beautiful
day it was, the sun was shining, the birds were singing,
doctors were talking about golf and I was happy
because I knew that my problems would soon be over,
it was quite surreal at the time. When I came back
down from theatre I had to stay flat on my back for the
rest of the day because of the epidural.
As operations go it was pretty painless, I only took two
panadol the day after the operation and that was
because I had a headache nothing to do with the sur-
5
gery.
EUROPEAN CONFERENCE
After about ten days the stitches fell out while in the
shower and I was a new man, it's now been five
months since the operation and things have never
been better.
I know that having this operation wouldn't be for everyone,
more than likely most people wouldn't need to
have it done. But if there is one thing I hope to achieve
by writing this article, I hope in future people with problems
such as this go to their doctor and don't take as
long as I did to do something about it. But if they are
too mortified to say anything to their doctor then I hope
they find a fellow PWCF to, how shall we say; talk
shop. If you know what I mean.
This year the 29th European Cystic Fibrosis Conference was held in Copenhagen, Denmark,
June 2006. The venue was the Bella Centre just 20 minutes outside Copenhagen, with an extensive
and very reliable network of public transport. Copenhagen is a wonderful city; it is full of character
and charm. With its crooked rooftops and Copper Towers, it’s winding streets and busy cafes, it is a
bustling city.
The Danish capital has a friendly feel to it, and the Danish themselves are an extremely friendly
nation. The Conference took place over 3 days with an array of topics to choose from. Here are just
a few of the topics that interested me. By Carol Brady
Work disability in adults with Cystic Fibrosis
and its relationship to quality of life.
M. Braithwaite Clinical Psychologist Alfred Hospital
Melbourne Australia.M. Braithwaite
With CF adult numbers on the increase, issues
related to work require specific attention. Work participation
rates and risk factors for work disability for
adults with CF were examined. 49 PWCF from an
adult CF service were recruited; factors taken into
consideration were employment history, illness
severity indicator and CF attributed work disability
factors were evaluated.
In over half of the PWCF (51%) CF had affected the
choice of occupation, career or decision to seek
employment. Over a third (37%) had to change their
specific job duties because of CF, over a quarter
(25%) had taken a cut in income, and a third (35%)
endorsed having ceased work because of CF.
When examining questions related to limitations of
employment (68%) of PWCF answered positively to
one or more questions, however few had sought
vocational guidance (6%).
Staff knowledge and understanding of segregation
policies in a large adult CF unit.
H. Miller Regional CF Adult Unit, The Cardiothoracic
Centre Liverpool UK.
Prevention of cross infection through effective CF
patient segregation requires the cooperation of staff
as well as patients.
In order to ascertain staff awareness for the
reformed segregation policy introduced at the Large
Adult Unit (Regional Adult CF unit in Liverpool, UK)
we audited staff knowledge in 8 key departments at
our hospital where carers work closely with PWCF.
181 anonymous questionnaires designed to test
staff awareness and knowledge was sent to staff in
the main CF ward and other medical and surgical
wards, the questionnaires were also sent to private
wards and the physiotherapy and Pulmonary
Function Departments.

EUROPEAN CONFERENCE
86 questionnaires (48%) were returned by staff
employed for an average of 10 years by the hospital.
In 6 departments all staff were aware that
patients were segregated and understood the reasons
for this, but in 3 departments 3 carers (4%)
were unaware. 80 (93%) of staff felt that segregation
was a good idea, but 37 (43%) had concerns
regarding its affect, 24 (28%) were unaware of the
importance of B Cenocepacia and 30 (35%) were
unaware of other Cepacia strains, 68 (79%) were
unaware of Pseudomonas species, 53 (64%) were
aware that some strains were transmissible. 37
(43%) expresses concerns about the adoption of
segregation by PWCF and a further 41 (48%) felt
that not all of their colleagues implemented the policy
all the time. 48 (56%) felt unsupported by the CF
team regarding segregation.
Increased segregation in an adult Cystic
Fibrosis centre: the impact on patients’ feelings
and behavior.
J. Milnes of Manchester Adult CF centre UK.
Patient's views on what they need.
PWCF have experienced changes in the organisation
of CF wards and clinics due to new cross infection
guidelines. Patients concerns about segregation
need to be addressed.
Patients at the Manchester Adult Cystic Fibrosis
Centre were surveyed to establish their needs and
suggestions for what might help in the adjusting to
segregation on a CF ward.
A structured self-completed questionnaire was distributed
to 100 PWCF. They were in and out patients
with Pseudomonas aeruginosa infection.
31% of PWCF reported not knowing their own infection
status; a further 3% incorrectly reported their
status despite the fact that 63% had being admitted
to the segregated CF ward that year.
36% of PWCF felt they needed more information
about cross infection and explanations for segregation.
42% felt a written leaflet would be most useful,
while 28% preferred to receive information via letters,
and 22% in face-to- face discussions. 67% of
PWCF had suggestions for what might help deal
with the effects of segregation.
Most common requests were for: recreational activates
to help pass the time (especially cable
TV/game consoles/dvds), ensuite bathrooms, computer
and internet access in each room, and access
6
to kitchen facilities. 4 PWCF reported they should
be able to continue to mix on the ward at their own
discretion.
Myself and Deirdre Meredith would like to extend
our thanks to the nurses & doctor’s of Limerick
Regional Hospital and St Vincent’s University
Hospital for arranging our letters to travel.
From left to right: Carol Brady, Deirdre Meredith &
Godfrey Fletcher with conference delegates.
Love is patient:
love is kind...
It bears all things,
believes all things,
hopes all things,
endures all things...
Love never ends.
1 Corinthians 13:4,7,8
The “before” (top) & “after” (bottom).
Congratulations to Daragh & Fil from all of us at FF!

WHAT AILS YE?
Every day I live I become more militant about smokers.
A bold statement? Not politically correct maybe
in this age of extreme "P-C-ness"? Is there such a
word? I don't care, it's my rant and I'll coin if I want
to… as I said I'm feeling belligerent.
It's a habit, an addiction, very difficult to give up; it's
a personal choice, peer pressure… I've heard them
all and I simply don't care - there's nothing a smoker
can say that doesn’t sound like an excuse to me.
Why, you ask do I feel this way? Surely with the success
of the smoking ban, the canonisation of
Michael Martin and the delight with which some
smokers are declaiming how much less they are
smoking I have no reason to be bitter.
The addition of oxygen to my life is the answer. That
and a recent spell in hospital during the hottest
weather on record for over 10yrs has compounded
my dislike of people who block entrances, exits,
doorways and stairwells with their puffing.
From the regularity with which patients gather at the
same spot I'm almost positive that they are spreading
word about it by describing it as "meeting at the
no-smoking sign". Such sweet irony. Human
nature… you argue. Lack of enforcement… I counter.
Why does that fail to surprise in an Ireland where
the attitude is "if you don’t catch me, charge me,
hold me down & cattle prod me... then it’s not illegal"?
On my breaks from the ward to find a breath of fresh
air instead I found that the best spots on walls,
benches and grassy patches were taken over en
bloc by smokers. While me, with my tank on my
back and fighting a chest infection, had to go that
extra mile… literally, to find a spot where I too could
7
WHAT AIL’S YE
Is there something that’s been bugging you for a while? Got something to get off your chest?
Future Force invites you to have a good gripe and asks “What Ails Ye”? Put on your boots
because we’re going on a long walk to find a smoke-free utopia!
Smoking is “banned” in the hospital environment...
By Jean Byrne
share in the wonderful weather but not be choking
and spluttering for the privilege.
Would a designated non-smoking bench be outside
the realm of possibility?
On deeper reflection I sometimes think that maybe
the problem lies within our understanding of the
English language… or lack thereof. Flammable
means the same thing as inflammable (confusing, I
know) but people take note … "prohibited" IS NOT
synonymous with "allowed". Maybe the droning
mechanical voice outside the main entrance of the
hospital actually attracts rather than repels, hmm? A
theory I would like to see researched by the
Department of Preventative Medicine & Health
Promotion within that fine establishment. Funding
anyone?
Maybe there is something in all that stair climbing
the physio puts you through in the name of exercise.
I have decided to use mine for more subversive purposes…
no, not to build up enough leg muscle to
carry me swiftly past the swirls of smoke… but to
increase my load bearing capabilities to carry a different
sort of tank in my backpack... a fire extinguisher!
Twenty years ago I sipped my juice in the smoky
canteen in Crumlin Hospital; travelled in a smokefilled
bus for many more years and looking back now
society thinks "how unacceptable, how disgusting!"
How long must I now wait for this latest scourge of
free breathing people to be purged?
My personal favourite solution; ban it. Ban smoking
in all public places… and enforce it.

ANNUAL CONFERENCE PHOTO GALLERY
Photos from the
CFAI Annual
Conference 2006.
Hosted by the
Eastern Branch &
held in
Portmarnock,
Dublin.
8

When we talk about "disability awareness" we are
really talking about disability unawareness.
People with disabilities do not want everyone to
be aware of their disability and treat them accordingly.
Often they find that they are either treated
as someone/thing different from the norm "abnormal"
or as though they do not exist at all "does he
take sugar?". The thinking behind "disability
awareness" is that all people should be treated in
the same way taking into account their differences.
People with disabilities want to be treated
like anyone else not as "special people"
So it is important that in our buildings, in our
meetings, in our level of respect, in our
language, we enable all people to have equal
access and to be treated in a sensitive and equal
manner.
My particular issue on this occasion is "language".
We all know that the child who is continually told
that she is stupid will under perform. We all know
that it is no longer politically acceptable to refer to
black people as "blacks". I assume that we also
know that it is unacceptable to refer to people with
disabilities as "the disabled" The disabled what?
Why is this terminology wrong? Why do informed
people no longer call travellers "Itinerants"? It is
because the particular people being labelled do
not like it. They find it offensive, they do not want
to be labelled and especially in that manner.
So what is my point? Well, I find it offensive and
9
LANGUAGE BIAS
By Tom King
demeaning to be labelled as a "CF adult"! Yes I'm
an adult; yes I have Cystic Fibrosis, but why distinguish
me from children with cystic fibrosis? If I
had cancer I wouldn't be described as "a cancer
adult". If I had a heart condition I wouldn't be
described as a "Heart Condition Adult".
I feel that I should be dealt as a person who has
Cystic Fibrosis when the issue is relevant to the
disease, but I want to be treated as an adult, independent
of my disease, at all times.
This issue came up strongly for me when the
recent decision regarding the veto of our trip to
Lourdes was made, due to cross infection. If I
had been an adult suffering from any other condition,
would I have had a say in this issue regarding
my own health? Would I have been told that I
could not go because my health condition would
suffer? Or would I have been advised and allowed
to make my own decision?
Why, when you insist on using the terminology
"CF Adult" do you refuse to treat us with the
respect of adults? Why do you see our disability
first?
Ed’s note: For a number of years now we have been
striving to change the antiquated politically incorrect
references to people with CF. We are people in the
first instance and have CF in the second instance…
we are not CF person's; sufferers; cystic's; young
adults or patients. We are people who live with cystic
fibrosis - it is only a part of who we are; it is not
the whole. Do not trivialise the significance of this as
a fundamental principal of equality for all.

INFORMATION
AHEAD
Summary
An all-Ireland organisation representative
of the third-level sector.
Its central mission is to promote
access for, and the full participation
of, students with disabilities
in higher education.
Introduction
AHEAD is an independent nonprofit
organisation working to promote
full access to, participation
in, benefit from and contribution
to third level education by people
with disabilities in Ireland, North
and South. It is a registered charity
(number CHY9999) and is
funded by the Higher Education
Authority, by members' subscriptions
(members include all third
level institutions on the island of
Ireland and students with disabilities)
and through European
Union funding.
AHEAD undertakes research in
areas relating to disability and
third level education and acts in a
consultative capacity to the
Higher Education Authority, educational
institutions and other
bodies in the education sector.
AHEAD lobbies to improve
access to and increase the participation
of students with disabilities
in third level education in
Ireland. It also strives to inform
and change national policy in the
areas of the education of students
with disabilities and the
employment of disabled graduates.
The website features the
“Inclusive Education Information
Centre”. This is an online reposi-
Association For Higher Education
Access and Disability
tory of accessible education information
for Ireland. Sections are
divided into:
oAccessing Third Level
Education in Ireland - A Guide
for Students with Disabilies &
Learning Difficulties.
oAble 4 College: Able 4 College
provides information to guidance
counsellors, teachers, parents
and students with disabilities
themselves, on career planning
and third level supports, as well
as information on different types
of disability, disability etiquette
and various teaching and learning
techniques.
oText Access: AHEAD, in collaboration
with the Consortium of
National and University Libraries,
has developed a centralised and
comprehensive catalogue of
alternative format resources for
students with disabilities at third
level.
Individuals can search for publications
from any of the participating
college Libraries in a variety
of media, including :
Electronic Text
Audio - CD
Audio - Cassette
For more details go to
http://www.textaccess.ie
oGET AHEAD - Graduate
Forum: is a national forum of selfadvocacy
on behalf of graduates
with disabilities. GET AHEAD's
motto is "by, for and with graduates
with disabilities". It draws on
10
the experience and enthusiasm
of students who have successfully
graduated from Higher
Education in Ireland.
oGreat Expectations! A project
that aims to inform guidance
counsellors about including students
with disabilities in the guidance
process.
oQuest for Learning - Useful
study skills for students. The
Quest For Learning website provides
a virtual learning support
network designed to support all
students making the move into
third level courses. The academic
demands of a third level course
are very different from those at
second level and this website has
very useful tips on how to deal
with those demands and quickly
improve ones study skills in third
level, guiding the student on how
to set up an effective study system,
how to take effective lecture
notes and retain that key information.
http://questforlearning.org
oWilling Able Mentoring -
WAM, a resource of graduates
with disabilities and employers,an
Equal funded program. WAM has
the long term aim of facilitating
and accelerating the transition of
graduates with disabilities to
careers appropriate to their skills
and abilities.
oFact Sheet ACCESS TO THIRD
LEVEL - What you need to know.
This information is aimed primarily
at students with disabilities and
is also relevant to guidance counsellors,
parents and teachers.

There are a number of basic
queries and issues that frequently
arise for students with disabilities.
These fact sheets aim to
address these queries from a
general perspective.
This fact sheet provides information
on:
• Access and Admissions.
• Disability Support Services.
• Assistive Technology.
• Learning Support.
The second National Hygiene Audit of Acute
Hospitals was published on 13th July 2006 by the
National Hospitals Office (NHO) of the Health
Service Executive (HSE)
The audit was conducted over the months of
February, March and April 2006 and visits by the
auditors were random and unannounced. Hospitals
were given an overall score, indicating a good
(85% or above), fair (76%-84%), and poor (75% or
• Examinations Facilities.
• Funding and Financial
Assistance.
• Inclusive Education.
• Legislation.
• Teaching Strategies.
Contact:
Address: PO Box 30, East Hall,
UCD, Carysfort, Blackrock, Co
Dublin
Tel. No.: (01) 7164396
FAX No.: (01) 7164398
11
below) score.
HYGIENE AUDIT RESULTS
Email Address: ahead@ahead.ie
Web Site: www.ahead.ie
Many thanks to AHEAD for permission
to use the information
available on their site.
If you are planning to attend any
college for the first time a look
through this website is strongly
recommended.
How clean is your hospital?
How has your hospital fared in the second hospital
hygiene audit? See the table below:
We have included only those hospitals in Ireland
which have CF Clinics. The full list of hospitals can
be found on the HSE website
http://www.hse.ie/en/NewsEvents/News/

ITALIAN CONNECTION
Mothers, who would have them? The nagging that
goes on is unreal, particularly when it comes to
holidaying.
Yes mother, I have the blue European Medical card.
Yes, I have the number of my VHI on that yellow
post-it you got laminated. Yes, I remember how to
use an ATM machine. I am bringing the travel nebuliser.
There is no way in hell the other big white yoke
is coming with me! Insurance, err, nooo. Why would
I need it? I've all the other stuff. Will I have room for
Ciproxin in my hand luggage you say? Well, considering
medicine is all that's in it, why the hell not?
Jeez.
LESSON ONE: Listen to mother.
That first conversation came back to me as I stumbled
headfirst into a pizzeria in Florence. I'm sure
they thought I was on drugs (no, not the cf kind!). As
an incomprehensible language suffocated my ears I
recalled the conversation my Mom and I had before
I left. Ah, mothers. How quickly their ten minute call
to the insurance company while you're deliberating
over shorts, skirts and flip flops turns them into Life
Saving Mothers. The last thing Mom asked me
before I set off to the 38 degree of Florence was if I
had printed out the insurance. And as all daughters
have the gift of doing; I smiled sweetly, kissed her on
the cheek and in a much lower voice drawled "of
course", as if she were the stupid one. Leaving for
the airport at the furthest point of my mind there was
a mental note pinned - find internet café, print out
insurance.
Ten days later after the most precise medical compliance
I had ever followed in my life I booked into a
well air-conditioned hotel alone. It was superior to
where I had been staying with my colleagues and I
was in complete desperation. I knew something was
wrong. It's really hard to explain but although I knew
I was unwell I hadn't realised it was so bad until
then. It's at this time that I took a stroll, or rather fall,
into that Pizzeria. Imagine walking around the spire
four times and that was roughly the distance from
my hotel to the pizzeria... In there my drunken staggering
caused a big scene and I left the place in a
bigger muddle. Sure, I'd thought about drinking a
fifth litre of water, but that diet coke was just so
12
By Orla Tinsley
much more appealing. However, according to U.S.
researchers the aspartame in it encourages dehydration,
which in my defence I did not know! Before
long they were hauling me through Florence in an
ambulance with my excellent Italian friend. It was an
experience.
LESSON TWO: Inform your travelling party about
your condition & warning signs they need to look out
for (and not when you're being carted away by that
ambulance..).
Stay hydrated and make other travellers aware, or at
least one. I appreciated their help much more than
the gutter I would have ended up in. Being that
dehydrated left me at serious risk of heart attack
which in turn affected my chest and diabetes, which
caused minor respiratory failure. I knew no Italian
but luckily enough I had a remarkably calm Italian
friend to translate for me and stay with me, but he
couldn't stay during procedures. Yes, those ten minutes
where an inexperienced nurse rammed a giant
nail, sorry needle, into my fragile portacath and continued
to bang it with her big Italian momma hand
were priceless. If in doubt, ask for the anaesthetist,
or alternatively, don't travel. Which is the exact
advice that charming lady proposed when she bellowed
- "Why you go on holiday if you know you
have this illness?!" Trust her to be able to string an
insult together yet not speak any other English to
me. Her temperament made me cry a little and beg
with praying hands and rocking body for my translator.
It sounds pathetic but my port felt painful and
broken. Her reply was to loom over me, her toothless
gob grinning as she brandished a syringe full of
sedation. Before long I had grabbed it, my fist waving
it at her and the two assistant nurses who had
been stroking my brow and sighing "tranquille" in a
creepily holy vibe and who were now holding me
down in a bid to restrain me. Note to self - easier
option, drink and bring salt supplements. Tell friends
warning signs; listen to mother and bring neb that
does Tobi.
LESSON THREE: The importance of having holiday
insurance.
After a night in a high dependency unit (HDU) I finally
got moved to the CF unit. A real CF unit. Own

oom, en-suite etc., heaven. After five days my Mom
flew over and contacted the insurance company
immediately. That eighty euro extra we had paid
was now paying for both our flights home whenever
I was fit, and a nurse and oxygen if I needed it, also
wheelchair assistance from check-in to terminal.
However, that turned out to be a bit of a mess, as
were the insurance company. Adamant that I told
them I wanted to fly from Rome, (although I was in
a Florence hospital) they initially searched for the
wrong flights. It took a great many phone calls on
my Mom’s part to organise our flight. We must have
communicated with at least seven different people
in the insurance company but finally when the
Doctors gave clearance we were out of there within
twenty-four hours with Ryanair. To fly with anyone
else such as Aer Lingus or Lufthansa we would have
had to wait a little longer as they need 24 hour clearance
before allowing you on a flight. The airport
people messed up with the wheelchair and I ended
up being walked to my flight with two first aid men.
It was really ridiculous. The insurance companies
promised-taxi failed to be there when we landed
however we found our own and headed straight for
Vincent's - who were superb during all of this, liaising
with the various hospitals. For once I was happy
to see the place.
Really, when you think about it paying eighty euro
once-off for a two week holiday got me so much,
including our flight home. If you keep receipts of
hotels, expenses & records of phone calls you can
claim most of it back. The problem I had, and that
most people have is that you just don't think it will
happen to you. As corny as it sounds this experience
really shows that it can and does happen. No
matter how disorganised the insurance idiots are -
pay for insurance and insurance pays back. For
flights, for phone credit and for your own safety...
FF can’t empahsise enough just how important it is
to have adequate cover when you travel abroad. It
CAN happen to anyone, especially in hot countries
where you might not realise you are getting dehydrated.
Insure yourself and be certain you are covered
for flights home and nursing care if required.
The European Health Insurance Card (the old E11)
only entitles you to the state-funded health care
scheme in the country in which you are staying. It
will not cover any of the costs involved in transporting
you back to Ireland. (see webwatch for more)
13
NATIONAL CONFERENCE
By Patricia Duffy
The PWCF talk at this year’s CFAI Annual
Conference, Portmarnock, Dublin is dedicated to
the hardworking partners of pwcf everywhere!
Improved management of CF has lead to an
increased life expectancy of people with CF. The
CF Registry of Ireland currently shows a 58/42 %
split of paediatric pwcf versus adult pwcf. The adult
population is set to outnumber the paediatric population
by 2010 - there' no stopping us!
This is great news. At the same time, it's a journey
to unfamiliar places. Somewhere along the line,
probably in our teens, a light bulb turned on - and
the realisation that we have a chronic condition,
sunk in. This revelation inspired us to learn to manage
ourselves, to do our physio, to take our medications
& our nebulisers and to recognise when we
had chest infections requiring more intense IV
antibiotic treatment.
Our determination to get on with life and to manage
our condition as much as our health allows us
makes us stubborn. Stubborn to accomplish independence;
for many people with CF it is a fundamental
ambition to prove to ourselves that CF does
not manage us, and that CF needn't dictate our
identity.
Many of us will meet life-long partners along the
way. There are many physical, psychological and
emotional challenges to us meeting a partner in the
first instance (it's well known there are not enough
eligible men in Dublin!!!), but seriously, linking up
with someone brings a whole new set of hurdles for
us to cross. We are suddenly faced with the challenge
of letting a partner into our lives...
This is likely to be a slow process starting with simple
milestones such as admitting that it's not just "a
bit of a cold" or "a touch of asthma" & that's not a
pack of cigarettes in your pocket; it's your enzyme
case & you don't smoke. When you've got that bit
closer you feel brave enough to show your port-acath
scar or your knobbly fingernails or whatever!

NATIONAL CONFERENCE
In the long run, it will mean introducing someone to
the nitty gritty of life with CF. The tedium of the routine.....
the highs and the lows. Your partner may
want to do everything for you, to help with your medications
and your physio. You may not want your
partner to see you doing your physio at first - it is a
hugely personal activity. Over time your partner will
become involved with your daily treatment regime,
they'll become the one to 'gently encourage' you to
get out for a walk & exercise, or get your physio
done. Further down the road, as trust grows, you
may wish to share activities such as going on holidays
together or arrange for your partner to collect
your medicines from the pharmacy, or even prepare
your colomycin (as long as they don't have an irrational
fear of syringes!).
Now, more than ever, people are extending their primary
care giver pool to their partners, husbands or
wives. As commitments are made the "circle of trust"
widens. This brings with it a transition of next of kin
duties & responsibilities to these people - a major
shift in the support network. Your family will be less
involved than you in previous episodes. As your next
of kin, your partner should be there for you whenever
they are needed, and it will be your partner you
will turn to for the support you need to help keep you
going. So on reflection, communication of your
diagnosis to your partner becomes the new memorable
event in having CF, and a milestone in a budding
relationship.
For some couples, despite sharing the care, there
can be a lack of openness about how each one is
feeling, for fear of worrying the other partner. But
when commitment has been made on both sides, at
a certain stage in a relationship, its probably safe to
say your partner has accepted your condition and
has made a life choice to support you through thick
and thin.
As they would be for any couple, healthy or otherwise,
the momentous events such as moving in
together, buying a house, marriage and starting a
family are life changing but living with CF can throw
in a few extra challenges.
Would we be able to apply for a mortgage?
Could we have children?
Would we be able to afford them the loving and caring
they deserve?
The answer to all of the above questions is "Why
not?"
14
Adult CF brings a range of health issues affecting
the couple as a unit. The CF teams appear to have
embraced this and are acknowledging the importance
of including the partner in important discussions.
Some couples may need to face making decisions
together about a transplant. The transplant
facilities in the UK provide accommodation for partners
to stay at various parts of the process. It's welcoming
to see how the partner is supported at all
steps and plays a central, pivotal role. During IVF
and ICSI treatment, peoplw with CF have written
that they are comforted by the emphasis placed on
support for the couple throughout the process.
Given that the partner is now taking on a significant
role in supporting the person with CF - what are their
thoughts? How difficult is it to live with CF through
the bad times as well as the good… when it's not
your own? To make it through both the daily grind
and the big issues, it is essential to them that they
know what support to give. Around the world, CF
websites display messages and comments made by
partners of pwcf; it's clear to see that they share
similar concerns as our parents did for us when we
were younger….. does that cough sound different, is
treatment working, will they need iv’s soon, is the iv
working, are they eating enough, getting enough
rest and exercise, and some different questions -
how will life be different after transplant, concern
about carrier testing .....The CF Association has a
section on the community forum where partners can
air their issues and get support from others.
Partners need to be encouraged to contribute to the
Association in any way they can, to ensure that the
needs of pwcf are fully represented. Living with CF
when it's not your own gives you a fresh perspective
on the ups and downs, the ins and outs. Their experience
and their awareness of our needs is an
untapped resource.
As we've grown up, we've started campaigning for
ourselves and now we invite our partners to join in
the effort. A shift in emphasis away from the traditional
family orientated around the PWCF, towards a
person with CF plus partner at the head of their own
family, is needed.
Something to reflect on...
Take another look at the CFAI
logo; can you now tell which
one of them has CF?

A new advocacy working group is now in place in St.
Vincent's University Hospital (SVUH). It is a huge
step forward that people with CF (PWCF) are now sitting
around the table with the CF team and hospital
administration and that communication has commenced.
It is a stepping stone for both parties, with
equal respect and open communication. We hope that
as these meetings progress, we will find positive action
and responses from everyone.
In attendance at the meeting held on 17th July 2006
were PWCF, representatives from ward nursing staff,
CF nurse specialists, physiotherapy, counselling,
administration & consultants.
The format for the meeting involved the PWCF bringing
all complaints, issues and concerns that have been
reported to CF House & to PWCF representatives to
the attention of both the members of the CF team and
the hospital administration. No names are given in the
meeting as all complaints are treated with the utmost
confidentiality.
As this process is a two-way transition the CF team
were also given the opportunity to comment on ways
PWCF could help improve efficiency of treatment.
An Action Log is to be collated at the close of each
meeting which should ensure that people follow up on
the issues raised.
Overall the meeting was frustrating - the hospital staff
could not comment on either the building of a new unit
or the provision of interim infrastructural measures for
Issues raised by PWCF/Actions
# St Paul's ward refurbishments:
Impossible to schedule at the moment with
A&E bed demands as it would mean closure
for a few weeks.
# St Paul's refurbishment of
shower/bathroom/toilets: There are no
plans to redevelop or improve these facilities.
# Flowers/plants as infection risks:
Wards with CF patients will be asked to
remove plants and flowers.
# Smoking in hospital wards & around
hospital entrances, affecting the physio
room: Alternative smoking area to be
made available for smokers.
# Shortage of disabled parking spaces:
Other patient groups don't have special
parking arrangements & none will be made
for PWCF.
# Car parking costs: No action logged.
# Outpatients infection risks: Should
improve with the move to the new building.
# In-patient infection risks/cross-infection
& MRSA exposure: Azowipes to be
made available in toilets.
# A&E waiting times/admission procedures;
bed shortage & bed management
issues: No action logged
# Staff training issues i.e. skipped
doses, IV's given late; not flushing
between drugs: Staff training to be organised
in St. Paul's Ward and other wards in
the hospital.
# Delays with letters to attend CF related
functions: Advice from team: people
can help the process by not leaving samples
in on a Friday evening; where possible
any morning is the best time. Have
name/hospital number and all relevant
details on samples & include copy of
15
PATIENT LIAISON GROUP
St Paul’s ward as this does not fall under their remit.
We have heard subsequent to this meeting that the
hospital has commissioned a firm of architects to draft
specifications for a new CF unit that will be submitted
to the HSE. On a positive note there has been a commitment
to increase staffing levels consisting of a new
consultant and ward clerk. Since our meeting, letters
concerning the allocation of further CF personnel to
specific hospitals across the country has been sent out
by the HSE as part of the additional budget allocation
to CF services for 2006.
St. Vincents team highlighted ways in which we can
help them as listed below. FF appreciates that the
majority of people already operate with due consideration
to the team however, there may be some individuals
who don’t. At the end of the day any improvement
in the the efficiency of service provided can only benefit
us all.
The pressure has to be put on the HSE until proper
facilities are in place for PWCF as they are the people
with the power to change it and not the CF Team. We
all recognise that the team, staff and administration are
always most helpful & do their best under the
resources and restrictions in situ, to follow up on any
complaints or problems for patients.
Meetings will be held quarterly - the next one is on the
20th Oct 2006. Please continue to send all complaints
in writing to CF House. Each one will be brought to the
table for discussion. If we keep complaining about
these issues we will be able to monitor the success or
otherwise of these meetings & decide on future action.
required letter.
# Dietary requirements: More snacks to
be made available for CF patients.
Issues raised by CF team
# Arrive to appointments on time. Ring in
advance if you're not going to make it. The
outpatient clinic has moved to the new
building & appointment times will be
stricter than previously.
# Arrive to home IV treatment review on
time and ring in advance if you are not
going to make it.
# Any patient coming into hospital should
arrange to have their car collected and not
take up a space for the duration of their
stay.
# Reduce clutter around bed to allow
space for cleaning of floors etc.
# Patients to bring in own respiratory
equipment when in hospital.

AUTOGENIC DRAINAGE
The importance of continuous and consistent daily
physiotherapy cannot be over emphasised, as stated
by the Annual Report 2005 of the Cystic Fibrosis
Registry of Ireland. However, physiotherapy is often
not prioritised in many CF patients daily routine and
by this I am referring to Airway Clearance. Many
patients will quite gladly go for a walk, or a run if they
are able, yet airway clearance for some can be more
of a challenge. We in St. Vincent's Hospital understand
and appreciate the time constraints on many
of our patients lives e.g.: studies, careers, families
etc, which is why we always try to tailor airway
clearance specifically for each individual patient.
Autogenic Drainage (AD) is an airway clearance
technique that many of our patients find very effective
and efficient. This article will hopefully encourage
more patients to use this simple technique to
clear more secretions, with less stress to the airways.
Here's the science:
AD is a technique based on the physiology of
breathing. It is not the classic "tipping" that occurs in
paediatric and, sometimes, adult centres. Expiratory
flow, that is, the speed at which you breathe out, is
the active force that is used to mobilise the sputum.
(Jean Chevallier, 2002)
As you are sitting there now, you are breathing at
what we call Tidal Volume. You are taking relatively
relaxed breaths in and out (Between the 2 red lines
on the diagram).
When you take a deep breath in, you inhale into your
Inspiratory Reserve (Up to the top blue line)
When you breathe out firmly, you exhale into your
Expiratory Reserve (The green line on the diagram).
Even if you huff/breathe out as much air as you possibly
can, you will still have some air left in your
lungs - this is what keeps your lungs inflated and
prevents them from collapsing. This is called your
Residual Volume (between the green and blue
lines).
One of the most important aspects of any breathing
technique, including AD and ACBT (Active Cycle of
Breathing Technique) is the Breath Hold. Imagine
16
By Aoibheann Leeney and Hope Fisher
you are going swimming - you take a deep breath
and you hold that breath as you go under the water.
To do this, a flap of tissue at the top of your throat
(glottis) closes over your windpipe to prevent any
water that might get into your mouth while submerged
going down your windpipe into your lungs.
Now, the important thing while doing AD is NOT to
do this!! As you take a deep breath in, hold your
mouth and throat open - you should feel a little extra
air going into your lungs without you actually actively
trying to inhale it. This is happening as extra airways
are being recruited (opened up), and air is getting
in behind plugs of sputum that might be closing
off some smaller airways. As you breathe out, you
shouldn't hear a big sigh, instead you should hear a
firm, continuous breath out. (Think about when you
hold your breathe under water and come up gasping
for air - don't do that!!). The breath in, the breathhold
and the breath out should be smooth and
almost flow as one (poetic as it might sound!)
So, now you have read about the basics, here's how
its done: (See Diagram)
o Take a few deep breaths to prepare, slowly breathing
in and out
o On the last deep breath, hold for 2-3 seconds,
then breathe out gently but firmly, as far as you can,
with enough force so that you can hear your secretions
crackling.
o Take a small breath in (low lung volume), hold for
2-3 seconds, then breathe out, again so that you can
hear your secretions.
o Repeat this as many times as is necessary for you
to either:
1. Feel your secretions start to collect or
2. Hear you breath become more coarse, thus
changing from a crackle to a rattle or
3. Both
o At this stage, you can now move up to a medium
size breath in (medium lung volume). Do this gently,
so that you do not move the secretions you have
worked so hard to move up from the small airways,
back down with the force of your larger in-breath.
Hold the breath for 2-3 seconds, then breathe out
firmly. It is important to note here that you do not

eathe out as far as you have done with the small
breaths.
o Repeat this as many times as is necessary for you
to hear or feel a change in your secretions/breath out
respectively.
o Next, you can move up to taking a deep breath in
(large lung volume). Again, "gentle" with the breath
in and firm with the breath out.
The purpose of mobilising the secretions up from the
small airways to the larger airways is that it helps to
collect the secretions as you move up from the small
breaths/lung volumes through to the deep
breaths/large lung volumes. Larger amounts of
secretions means more effective clearance in a
shorter length of time, with less exhaustive coughing,
which if you are all honest with yourselves, is
one of the most tiring parts of trying to clear your
secretions!!
With AD, some patients can actually clear secretions
into their mouths, and do not need to cough at all!!
Less coughing also means you are protecting your
windpipe, minimising further damage from the years
of coughing you have already been doing!! You may
find that you can hear lots of secretions while you
are performing a cycle of AD, but when it comes to
the cough, you can't expectorate any secretions. If
this is so, persevere with the firm breaths to move
the secretions a little higher towards your mouth.
Also, try using a little more force, for a little longer, or
a little shorter and faster. However what you really
17
AUTOGENIC DRAINAGE
do NOT want to hear is a loud wheeze, or sometimes
almost a "bark".
In addition to doing AD, it is important to co-ordinate
your airway clearance session with your bronchodilators,
if you are taking them. Approximately 20
minutes after your short-acting bronchodilators is
the best time to do your AD (If you feel like going for
a short walk after the bronchodilator, this will maximise
you AD session!)
I would strongly advise that you do not try to teach
yourself this technique. If you would like to learn it as
a new Airway Clearance Technique, contact your
local CF centre. Alternatively, please feel free to contact
the Cystic Fibrosis Physiotherapists in the
National Referral Centre, St. Vincent’s University
Hospital, Elm Park, Dublin 4. We will be more than
happy to teach you!!
(I'm enthusiastic, can you tell?!?!?!)
PWCF Comments:
Grace Sheehan: AD enables you to be productive
without the tiresome effort of repeated coughing.
Although holding back "the cough" requires a lot of
control, the airway clearance you achieve is worth
the effort.
Orla Tinsley: I find AD an excellent form of physio
as it encourages independence, without pepmask
etc., and can be practised everywhere. It also
requires a high level of concentration & focus which
can translate to other areas of life.

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Artwork by Nathan Swan