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How I

put users
in the
driving seat
U S E R - l R l E N D l Y
ISSN 1368-2105
summer ±oo¡
Choice and
The heart of
our service
Cringe to credit
So much
to offer
PEG to
One man’s story
and stigma
An unequal life
My top
Tips from people
with aphasia
vìn a Stìckerpack: Saíe
Eatìng and
Would you like easy access to materials
for personalised eating and swallowing
advice charts? Help is at hand in the
form of a pack of 44 re-usable
coloured stickers (covering diet,
fluids, medication, positioning
and general safety advice) and an
explanatory book, blank stickers,
photocopiable display boards and pro-
tective plastic covers. Developed by a speech and lan-
guage therapist and suitable for children and adults with any
eating and swallowing difficulty, the pack has been refined to
reflect the comments of staff involved in its six month pilot on
two hospital sites.
The Stickerpack normally retails at £50 but the Dementia Services
Development Centre is making TWO copies available FREE to
lucky readers of Speech & Language Therapy in Practice.
To enter, simply send your name and address marked ‘Speech &
Language Therapy in Practice - Stickerpack offer’ to Marion
Munro, Publications Secretary, Dementia Services Development
Centre, University of Stirling, Stirling FK9 4LA. The closing date
for receipt of entries is 25th July and the winners will be notified
by 1st August.
The Stickerpack and a publications list are available from the
Dementia Services Development Centre at the above address,
tel. 01786 467740.
vlN the Dìagnostìc
Eva¦uatìon oí Artìcu¦atìon
and Phono¦ogy (DEAP)
Are you looking for a
comprehensive, UK
standardised assessment
of articulation and
phonology that will
guide you towards the
most effective therapy?
The DEAP includes a
diagnostic screener
which directs you to the
main articulation,
oro-motor, phonological
and inconsistency
assessments as appropriate. Co-authored by Barbara Dodd, the
DEAP is for children aged 3 years 0 months to 6 years 11 months.
The normal retail price is £204.67 but The Psychological
Corporation is offering a complete DEAP kit FREE to a lucky
reader of Speech and language Therapy in Practice.
For your chance to win, simply write your name and address on a
postcard with the title ‘DEAP Reader Offer’ and post to: Liz Akers, The
Psychological Corporation, 32 Jamestown Road, London NW1 7BY.
The closing date for receipt of entries is 25th July and the winner
will be notified by 1st August.
The Diagnostic Evaluation of Articulation and Phonology is
available along with a free catalogue from The Psychological
Corporation, tel. 020 7424 4512,
Josie Roy has scooped two prizes in the Spring 03 issue - the set of
four Bungalow software programmes from Propellor multimedia
and a copy of Speechmark’s Semantic Workbooks! The other lucky
winner of the Bungalow software is Judith Hibberd (two pro-
grammes), and the other Semantic Workbooks go to Kevin Borrett
and Gill Sampson. Julia Hannah, S.M. Lines, Helen Broderick and
Lauren Court win Speaking & Listening Through Narrative (2
from Black Sheep Press. Congratulations to you all.
Summer 03 speechmag
“Just wanted to say that I think the website is
excellent. We have a returner to practice starting
with us, and I was able to use the index of
articles to point her in the right direction.”
(e-mail from chief speech and language therapist Christine Mills)
In need of inspiration?
Doing a literature review?
Looking to update your practice?
Or simply wanting to locate an article you
read recently?
Our cumulative index facility is there to help.
The speechmag website enables you to:
View the contents pages of the last four issues
Search the cumulative index for abstracts of
previous articles by author name and subject
Order copies of up to 5 back articles online.
New article: Know the person, not the problem
Fiona Davis, a speech and language therapy student who
has a cleft palate joined a weekend camp for young people
with cleft lip and palate as a volunteer. While the many
activities and informal opportunities were appreciated by
the children, the benefits of a perspective beyond the clinic
are also clear.
The editor has selected the previous articles you might
particularly want to look at if you liked the articles in the
Summer 03 issue of Speech & Language Therapy
in Practice. If you don’t have previous issues of the mag-
azine, check out the abstracts on this website and take
advantage of our new article ordering service.
If you liked...
Lorraine Speirs, see (009) Hickman, J. (Autumn
1997) ALD and dysphagia: issues and practice.
Val Levens, look at (037) Levens, V., Gooding, S. &
Gooding, J. (Autumn 1998) An adult with Rett’s
Syndrome: the feelings and outcomes.
Helen McFarlane, what about (088) Hamilton, L. &
McKenzie, K. (Winter 1999) Moving on: life stories.
Margaret White, try (138) White, M.: Uncharted
territory, (139) McCormick, C.: Shared care, (140)
Freeman, L.: An ever-changing story. All from
Winter 2000, How I manage progressive
neurological disorders.
Sarah Earle, see (060) Leonard, A. (Spring 1999)
Right From The Start: The end of the (bad) beginning?
The I CAN conference report, consider (181) Hall, A.
(Spring 2002) The early intervention gap – can we
fix it? (Yes, I CAN!)
Also on the site – news about future issues, reprinted
articles from previous issues, links to other sites of
practical value and information about writing for the
magazine. Pay us a visit soon.
Remember – you can also subscribe
or renew online via a secure server!
lnsìde cover Summer o¡ speechmag
Reader oííers
Win the Diagnostic Evaluation of Articulation and
Phonology, Stickerpacks: Eating and Swallowing and
Speaking, Listening and Understanding - Games for
Young Children (p.13).
± News / ·omment
( The heart oí our servìce
“User involvement is not just the latest trend in service
provision but an essential part of getting any service
right for people.”
How do we enable people with learning difficulties to
make more choices, participate more in their commu-
nity, and develop their skills and competencies? Speech
and language therapy has come a long way, but Helen
McFarlane is already taking the next step.
8 l know what peop¦e need írom
my servìce – don’t l'
“Comparison, sharing and exploring perspectives
prompts lively debate. Actions can be agreed on -
which areas to target and how. However, in all of this it
is the process that is the most valuable. We need to
ensure we do not rush for outcomes at the risk of missing
out the gold that is revealed in getting to them.”
Val Levensand her team have been seeking users’ views for over
10 years and, more importantly, changing services as a result.
++ Revìews
Head injury, persistent communication difficulties, social
skills and learning disability.
+± l ·AN make co¦¦aboratìon count
“Collaboration that works combines strategic lead with
backup on the ground - hardly rocket science but, in
practice, we know how difficult it can be to achieve, and we
need to be aware of what works so we can do more of it.”
Avril Nicoll attends the 7th I CAN national conference.
+( Nothìng more to oííer'
“As a therapist it is very easy to feel daunted... we need to
take a step back, not to see a dysarthria needing therapy,
but to see the person with the dysarthria. We can sometimes
get too bogged down in the specific problem without
seeing the overall view. We should not only be dealing
with the problem but with the way this affects the person,
their ‘groups’ and the way they live their life.”
Drawing on quotes from her qualitative research, Margaret
White argues that we should be actively facilitating
and offering support to people with progressive
disorders, even when traditional ‘therapy’ has ended.
+; So much to say
“This all takes a lot of time and effort but, when you
can’t do a lot for yourself, what you can do becomes
your only mission.”
In sharing his experience of Motor Neurone Disease,
David Parker raises understanding of the positive things
that support people affected by a progressive disorder.
+8 Oats not so sìmp¦e
“Assessment and management of dysphagia should be
a true test of person centred planning and reflective
practice, as decisions made have far reaching
consequences. Non-oral feeding has implications for
quality of life, sociability and self-esteem, not only for
the person concerned, but also impacting on carers
and family.”
Lorraine Speirs tells us about Robert, who had
existing eating and drinking limitations due to cerebral
palsy exacerbated by a stroke at the age of 75. Three
years later, his PEG was removed and he could enjoy
his porridge again.
±+ Socìo¦ogìca¦ perspectìves on
ìnequa¦ìty serìes (¡)
Dìsabì¦ìty and stìgma: an unequa¦
“...examples of good practice might include the
provision of accessible information for disabled clients,
parents and relevant others, and the involvement of
disabled people as advisors at all stages of policy
development and review within clinical practice.”
The Disability Rights Commission campaign asks, is a
disabled person only half a person? Sarah Earle
explores how we can break down barriers and at the
same time play an important role in treatment and
±¡ lurther readìng
Preschool language, brain injury, profound disability,
Down Syndrome, dysphonia.
Back cover
Ny Top Resources
“Even close friends and family can find it hard to have
and develop conversations, so a book about your life
and important events, people and achievements can be
a starting point for conversations and sharing stories.”
Tips for conversations from people with aphasia, for
people with aphasia.
(publication date 26th May)
ISSN 1368-2105
Published by:
Avril Nicoll
33 Kinnear Square
AB30 1UL
Tel/fax 01561 377415
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Manor Creative
7 & 8, Edison Road
East Sussex
BN23 6PT
Avril Nicoll RegMRCSLT
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Tel / fax 01561 377415
©Avril Nicoll 2003
Contents of Speech & Language
Therapy in Practice reflect the views
of the individual authors and not
necessarily the views of the publisher.
Publication of advertisements is not
an endorsement of the advertiser
or product or service offered.
Any contributions may also appear
on the magazine’s internet site.
Cover picture by Paul Reid, posed by
model. See p.24
How l put users ìn the drìvìng seat
“How many people can you fit in a Mini? A
mind-numbing nineteen! Of course, laden with
so many individuals, driving is virtually
impossible. And the same is true of
organisations with many stakeholders, unless it
is absolutely clear who is in charge of driving.”
(Cecilia Yardley)
Speech and language therapists have a lot in
common with driving instructors but do we
fully understand what it means to put our
users in the driving seat? Ann Auchterlonie,
Carole Higginbottom and Cecilia Yardley
suggest why we should accelerate the process.
Speech and language therapy is one service
targeted in the government’s plans for
schools to provide a full range of community
services by 2006.
At least one school in every local education
authority in England is being funded to
provide childcare, health and social care,
lifelong learning opportunities, family
learning, parenting support, study sup-
port, sports and arts and information and
communication technology access.
Funding will be targeted initially at the
most disadvantaged areas then rolled out.
The idea is to enable schools to focus on
their core role of raising standards for
pupils by supporting children’s learning
through encouraging onsite provision of
services like speech and language therapy
so children do not miss out on schooling to
travel to appointments.
For the preschool stage, children’s centres
are planned for disadvantaged communities
in England, to include high quality childcare
and early education, parenting support,
employment advice and outreach to par-
ents, and child and family health services.
The government believes new research
lends support to its policy of developing
integrated centres. A lead investigator for
the Effective Provision of Preschool
Education research said, “This is the first
large scale longitudinal study in the UK to
provide detailed, hard evidence on the
effects of preschool education on children’s
social and intellectual development at the
start of school. It has revealed the way learn-
ing experiences at home combine with good
quality education to provide a boost to the
development of all children – especially
those from disadvantaged backgrounds. The
study also explores the effective practices in
preschool settings which appear to make a
real difference to children’s development.” / www.basic-
A new collaborative website on the needs of children with
speech and language difficulties aims to provide a first stop
for information and support.
The website - which will be live from Monday 2nd June - is split
for parents and professionals but users are encouraged to view
the whole site. It includes details of organisations and profession-
als who can help, useful publications, frequently asked questions,
fact sheets, news and an interactive element. Developed by the
charities I CAN and Afasic with the professional body the Royal
College of Speech & Language Therapists, with finance provided
by BT and Lloyds TSB Foundation for England and Wales, the site
will be subject to ongoing evaluation and development.
Commenting on the development Gill Edelman, chief executive
at I CAN, said, “Research shows awareness and understanding
of speech and language difficulties is low, and people find it
hard to access information. This site is a huge step forward in
providing parents and professionals with vital, quick and acces-
sible information.”
In a separate move, the Afasic website has also had a revamp,
with more publications now available online. Afasic is the UK
charity representing children and young adults with speech,
language and communication impairments.
to merge
Two charities which
provide opportunities
for inclusion through
safe play facilities for
disabled children are
planning to merge.
It is expected that the
six adventure play-
grounds in London,
information service and
national training and
consultancy network
run by Kidsactive will be
integrated within KIDS
over the next few
KIDS is a national charity
dedicated to helping
children with disabilities
and their families. It is a
leading supporter of
inclusions policies.
KIDS, tel. 020 7359 3635,
Autism guidelines
A national plan of expert recommendations for children with autism
aims to avoid the current ‘postcode lottery’ for those affected.
Developed by a group of professionals, parents and voluntary sec-
tor representatives, the guidelines recommend that there should
be a positive response to parental concerns at all times and aware-
ness training for community based staff working with children. A
general developmental assessment should be the first stage of the
process. Where autism is suspected, children should receive a
multi-agency assessment, and a key worker should be appointed.
The guidelines also cover reporting procedures and the need to
have a Family Care Plan in place within six weeks of the end of the
multi-agency assessment. The report recommends that within the
next 18 months all local areas should establish a coordinating
group to review services and identify training needs. They should
also have a trained professional to advise on specific interventions
for autism spectrum disorder and a specially trained teacher with
resource backing who can be consulted in the setting up of indi-
vidual education plans.
The chair of the National Initiative for Autism: Screening and
Assessment core working group said, “The report provides a tem-
plate for multi-agency teams so that families and professionals
know what is agreed as current (2002) best clinical practice irre-
spective of location across the UK.” In welcoming the guidelines,
the National Autistic Society highlighted the focus on support for
the whole family, multi-agency working and planning and autism-
specific training.
Appendices include references for a variety of assessment tools,
reviews of current practice, therapies, intervention and literature,
proformas of timeframes, a management plan, and a cost table.
Talking point
Community schools
Inclusion of children with Down’s syndrome is being supported by
an education pack for mainstream schools.
The Down’s Syndrome Association resource is designed to meet the
needs of teachers with little time or specialist knowledge and includes
information on communication and dealing with challenging behav-
iour. Chief executive Carol Boys said, “Our feedback from education
staff and parents is that there is a desperate need for practical support
that can be provided free to all schools who need it. This takes the
pressure off the teaching professionals and also off the parents who
have had to become the experts themselves, not only researching and
advising on teaching methods but frequently having to pay for the
limited range of materials previously available.”
The pack has been distributed to all Local Education Authorities and
is available to download free from the Down’s Syndrome
Association’s website.
Down’s syndrome
and inclusion







news 8 comment
A few years ago my experience of part of the NHS made me so angry I joined a
consumer group, started a campaign and am now one of a group of lay people
and professionals working together to bring about improvements in services.
Whether the personal issue is war, global warming, school closures or dog
fouling, there comes a point when we get active, and speech and language
therapy is no exception. Val Levens (p.8) describes the phenomenon of “people
who have had cause to complain to our service being the most giving and
energetic in sharing their ideas”. This shouldn’t really surprise us. We know
from our own experience that when we complain it isn’t to get compensation
or even an apology, but to prevent the same thing happening to someone else.
The wish to make things better for other people is fairly universal, but people
vary in how strongly they feel and how skilled and able they are to do this.
David Parker (p.17) and Robert (Lorraine Speirs, p.18) wanted their experiences
to be published to inspire and encourage others. Sadly, neither is around to see
the final result, and I am grateful to their families who were keen for
publication to go ahead. On reading David Parker’s article, Margaret White
(p.14) commented that she would feel honoured for her article to appear
alongside his - “So many people saying the same thing. Why aren’t we listening?”
Carole Higginbottom (p.26) finds it is easier to listen and adopt a more
holistic approach when operating outside the pressurised NHS system.
Working for the National Autistic Society she is encouraged to adapt to the
changing needs of her client group. Cecilia Yardley (p.27) reports on how
Speakability has changed its emphasis in recognition of the fact that speech
and language therapy is very important - but then the aphasic person has to
get on with the rest of their life. At Connect the focus is on empowering
people with aphasia; their users’ commitment to working together to help
others is evident on our back page.
At the start of my career I remember the urge to ‘cure and care’ and,
although I’ve learnt a lot, I have to confess it has never entirely gone away.
However, as Sarah Earle (p.21) points out, this attitude inadvertently
contributes to the process of disablement and we need to move further
towards a way of working that reflects the social model of disability. That
the profession is making progress is evident to me, almost issue to issue, and
Helen McFarlane (p.4) is well ahead with her work with adults with learning
disabilities. To her, user involvement is not a trendy term, but something
fundamental to getting a service right.
User involvement is also a process, not something that is achieved in one go
as Denise Ford (I CAN conference, p.12) has found. Initially parents were kept
at a ‘safe’ distance, but now staff and parents attend study days together, to
everyone’s benefit. Ann Auchterlonie (p.25) believes that involving our
children and young people and their parents as active participants has an
impact long after therapy has ended.
Personal experience shows me how successful user involvement can be when
parties respect and strive to understand each other. So, how user-friendly are you?
Avrì¦ Nìco¦¦,
¡¡ Kìnnear Square
AB¡o +Ul
o+çó+ ¡;;(+ç
End of life
A nurse with a long established interest in end of life deci-
sion making has set up a website to provide objective
information to health professionals and stimulate debate.
Ann Moran said, “I have spoken to a range of groups
on this issue and the problem with the debate in the
UK is that it has become polarised. This proves very
unhelpful to health professionals trying to obtain a
clear understanding of the issues.” Contents include
information on living wills, decisions to withdraw or
withhold life prolonging treatment and a survey
which will gather evidence reflecting the views and
experiences of a range of health professionals
involved in this area of care.
No time to lose
The National Service Framework for Long Term Conditions
must address the unique characteristics of motor neurone
disease if it is to provide any real benefit to people with
the condition, according to a leading charity.
The Motor Neurone Disease Association is highlight-
ing four critical areas for action under the banner ‘No
Time to Lose’: early diagnosis, coordinated specialist
services, access to specific clinical interventions and
support for informal carers. The chief executive of the
association sits on one of the working groups advising
the government on how the framework should be
constructed. It is due to be published in 2004 with a 10
year implementation period from 2005.
School website praised
A school for children with severe learning difficulties
and profound and multiple needs has had its website
shortlisted for an international web award.
Priorywoods School in Middlesborough has developed a
website which includes educational resource materials,
downloadable worksheets and a kids-only area. One
class has symbols and photographs of them acting out
their favourite story, the Three Bears, and there are
downloadable switch activated videos of popstars to
promote cause and effect.
The website is one of 12 shortlisted for the 2003 Cable
and Wireless Childnet Awards.
Count us in
An online conference centre is bringing together ser-
vice users, service providers and policy makers from
around the world to discuss mental health.
In July 2003 the Mental Health Foundation / Foundation
for People with Learning Disabilities conference Count
us in: the mental health needs of children with learning
disabilities will include themes of services, policies and
practices, and transition to adult services. Registration is
free at and, in addi-
tion to papers, there is the opportunity to participate in
See also and
Please note the correct spelling of Bickiepegs, supplier
of the Doidy cups recommended in Rachel Howarth’s
top resources in the Spring 03 issue.
user ìnvo¦vement
I have recently come back to my job. I work as a
speech and language therapist for people with
learning difficulties who live in South Glasgow.
For the past two years I was working for three
organisations in the voluntary sector:
• Enable Glasgow branch,
• Fair Deal For 1 in 100 and
• The Advocacy Project.
My job was to start a user involvement project
called Planning Together. I worked with Laura
Alexander, a parent activist who is a campaigner
for change for people with learning difficulties and
their families.
The aim of the Planning Together project was to
put people with learning difficulties and their fam-
ilies at the heart of service planning for better lives
in the community. Services might include leisure,
education (such as colleges), health, respite/short
breaks and jobs/employment.
User involvement is not just the latest trend in ser-
vice provision but an essential part of getting any
service right for people.
In speech and language therapy, it has long been
good practice to involve the client in setting goals
and agreeing a contract of care. Our own profes-
sional standards (Communicating Quality 2) state
“A client centred approach must be adopted,
respecting the individual’s needs and opinions
and promoting his/her active participation in any
intervention and the decision-making processes
associated with it.” (RCSLT, 1996).
“the active role of carers is seen as essential, with
therapists supporting their involvement.”
However, a significant amount of speech and lan-
guage therapy is delivered via staff training.The
challenge for speech and language therapy, then,
with the policies of “same as you” in Scotland and
“valuing people” in England and Wales is to
involve people with a learning difficulty at all levels
in our service. It is no longer acceptable to involve
people only in our more traditional approaches of
offering episodes of therapy activity.
In Glasgow we have developed a service process which
shows who we provide a direct speech and language
therapy service to and who receives a service via staff
ìí you want to • make your wrìtten communìcatìon more
• move away írom tradìtìona¦ communìcatìon
group therapy
• broaden your understandìng oí workìng
ìn the communìty
Read thìs
The heart of

How do we enable people with
learning difficulties to make
more choices, participate more
in their community, and develop
their skills and competencies?
Speech and language therapy
has come a long way, but Helen
McFarlane is already taking the
next step and putting people
with learning difficulties and
their families at the heart of
service planning for better lives
in the community.
Here, she explains why ‘user
involvement’ is not just the latest
trend but an essential part of
getting any service right.
user ìnvo¦vement
Training involves design, delivering/teaching and
evaluating. There are a number of questions we
should ask ourselves to aim to involve people who
rely on our services in all stages of providing a ser-
vice via training:
1. It is important for us to ask people with learning
difficulties and families: “what do you want to know
about communication?” and “what do you want
your staff to know?”
2. How can we involve people with learning difficul-
ties in teaching on courses?
3. Can individuals be supported to be co-tutors, can
we use video, photos and pictures if people would
rather not be in a crowd of people they don’t
know, can we use people’s stories and quotes or
experiences as teaching aids? Not as traditional
“case studies” but by jointly devising training activ-
ities and materials.
4. Can we include people with learning difficulties
and families as participants on our courses?
5. Are the handouts we use produced in simple
language with graphics to help aid understanding?
6. Are the times that we run courses appropriate
for families with caring responsibilities?
(In Glasgow we are liaising with family members to
adapt the foundation course that we run. So far
over 300 staff have accessed this training but only a
handful of families. We are running a course specif-
ically for family members next month starting at
10.15 and finishing at 2.15pm to fit in with times
when their sons/daughters are attending their day
7. When we evaluate training do we focus on the
experience of the client and look for evidence of
the person being able to:
• make more choices,
• participate more in their community,
• develop or make better use of skills and
These are some of the five accomplishments that
O’Brien identified as long ago as 1987 as ways to
measure how effective a service is for people with
our service
learning difficulties. They have stood the test of time
and remain as relevant today as we strive for improved
opportunities for people with learning difficulties.
The speech and language therapy service for adults
with learning difficulties in Glasgow includes 10
speech and language therapists. We have a range
of grades and experience and we work in local
areas and/or specialties. Each senior therapist is the
lead therapist for specific areas of work, for exam-
ple, student placements and liaison with the local
speech and language therapy education establish-
ment, audit, training, working with people with
complex needs and so on. This role does not mean
you are the only therapist who undertakes work in
that area, but you provide support and advice to
other colleagues and you may initiate work in the
area that you lead.
As the lead therapist for user involvement, I am
able to continue to support the work of my former
colleague at Planning Together and to encourage
the local speech and language therapists to get
involved in providing communication advice and
support for user groups. During my secondment I
learned a great deal and I am now working as the
lead speech and language therapist on user
involvement. I would like to share some of my
thoughts and learning with you.
Some of the lessons I have learnt have implications
for us as speech and language therapists and as
experts in communication. Others apply to us as
staff who work for the NHS, education, social work
and/or other statutory agencies.
1. People with learning difficulties
and their families are the
experts about themselves.
Our advice must be based on listening to what the
person with learning difficulties and/or their family
want and need from us. Our advice will be much
more practical and much more likely to be acted
upon if we genuinely find out what the person
wants and feels about their own communication
successes and needs.
Even if the services make it easier for us to visit at
the day centre or group home it is vital to make
links with family members. Paid staff come and go
but family members are always present and often
have the highest concern.
user ìnvo¦vement
Most speech and language therapy services for
adults with learning difficulties have undergone a
significant shift towards a social model of disability
(van der Gaag, 1998). This has included an emphasis
on training for communication partners and on
influencing the communication environment.
However this work can sometimes be hampered by
the perception that speech and language therapy is
for fixing the person with a communication disorder.
We could be more effective by connecting the work
we do with the campaigns by people with learning
difficulties themselves. People First, The Tenants
Action Group of Key Housing and many other self
advocacy groups campaign to get read-easy infor-
mation available and promote the use of photos
and graphics for minutes, agendas and so on.
Language is another issue. When speech and lan-
guage therapists advise using ‘symbols’, we can be
met by resistance (“that’s childish”; “they’re just as
complicated to understand as speech”). In contrast,
‘graphics’ is a much more widely used word. It connects
to the cool and highly valued world of computers.
Perhaps we might be more successful in getting our
message across if we use the word ‘graphics’
instead of ‘symbols’ to recommend photos, line
drawings, Boardmaker and so on? I found some
excellent examples of minutes and agendas being
accompanied by graphics. Support can also be provided
to help individuals with significant communication
difficulties take full part in consultation and con-
ferences through graphic facilitation. Here, one
person draws key images to pick out the main points
and summarises what has been said by referring back
to the drawings.
5. Total communication can be
included as a practical approach
in response to listening to what
people with learning difficulties
themselves say they want to
know more about.
Issues identified by groups such as People First,
T.A.G. and ACE (Enable) include:
- getting and keeping a job
- sexuality and relationships
- stopping bullying and harassment
- human rights, values and learning from history
- being part of the local community.
As lead therapist for user involvement I have helped
to devise and run an anti-bullying group at one of
the local day centres, I have become a co-trainer for
the loss and bereavement training that is offered in
Glasgow and I co-teach an evening class about social
inclusion at a local college, called Getting Involved.
Effective communication is key to including people
with learning difficulties in all of these learning expe-
riences. Applying total communication in such ways
seems to be a much more user-led way of promoting
r ra a
p p
h h
i i c c
s s
2. People with learning
difficulties and their families
rely on the professionals to
provide good quality, up-to-date
information that is easy to read
and understand.
Whilst working at Planning Together I was amazed at
how little information was available to people with
learning difficulties and their families. In this age of
communication with e-mail and the internet at many
workplaces, with an emphasis on information
through newsletters, team brief and a major cycle of
team meetings, people who rely on our services are
often the last to know of any changes. There were so
many stories of people phoning to speak to a key
worker or other professional, to be told “Oh, s/he has
left. Can I help?” I wonder if, as speech and language
therapists, we routinely let people know about what
we are doing, new staff, maternity cover and so on?
Perhaps we can produce a speech and language
therapy newsletter or encourage our learning dis-
ability team, day services or other services to do so?
A newsletter using simple language, photos and
symbols/graphics would be the most accessible and
help to promote total communication approaches.
3.The voluntary sector offer a
range of services, activities,
information and advocacy - BUT
have no direct access to names
and addresses and rely on
statutory services to pass on
I was amazed at how many projects and initiatives
I found and collaborated with when I worked in
the voluntary sector. There are campaigning organ-
isations including People First, ACE, pamis; there
are clubs and social groups run by volunteers and
there are information services. One thing that they
all have in common is the desire to attract new
members, and often ongoing funding depends on
it. However, with no direct access to the names and
addresses that the NHS or social work hold, organisa-
tions rely on word of mouth and general advertising.
Part of our role could be to ensure we are up-to-
date with knowing what is in our area and getting
the teams we work in to provide information to
families about what support and opportunities are
available. For example, do our screening checks or
initial visit schedules include space for making sure
people have this information?
4.The message of total
communication approaches can
be more powerfully made by
connecting to the user
involvement agenda.

user ìnvo¦vement/news
gestures, simple speech, objects and graphics than
the days of speech and language therapists running
“communication groups”.
I hope that what I have learned from my experi-
ence will enable the speech and language therapy
service in Glasgow to respond to and reflect the
needs of people who rely on our services. More
than that, we will actively engage people with
learning difficulties in developing and evaluating
our services.
Helen McFarlane is a speech and language thera-
pist with Glasgow Learning Disability Partnership.
She has also worked with people with learning dis-
abilities in Wigan, South Devon and Bristol, been a
joint training officer for Gloucestershire learning
disability social work and health services, and in
1999 completed a masters in education.
Department of Health (2001) Valuing people: a new
strategy for learning disability for the 21st century.
O’Brien, J. (1987) A Guide to life-style planning. In
B. Wilcox & G. Bellamy (Eds) A comprehensive guide
to the activities catalogue: An alternative curricu-
lum for adults with severe disabilities. Baltimore
Paul H. Brookes publishing Co.
RCSLT (1996) Communicating Quality 2. Royal
College of Speech & Language Therapists, London.
Scottish Executive (2000) The same as you?
(Available in full at
van der Gaag, A. (1998) Communication skills and
adults with learning disabilities: eliminating profes-
sional myopia. British Journal of Learning
Disabilities 26; 88-93.
The Boardmaker™ software used in this article is
from Mayer Johnson. It is available in the UK from
Don Johnson Special Needs, tel. 01925 241642.
Useful websites
ACE (Enable)
PAMIS (Profound and Multiple Impairment Service)
People First Scotland
Quality Action Group
Scottish Consortium of Learning Disabilities
•Do l oííer traìnìng to staíí at
the expense oí workìng wìth
•Do l routìne¦y ¦et c¦ìents know
about changes ìn servìce
•Do l know the ìníormatìon,
campaìgnìng and socìa¦
organìsatìons ìn my area'
news extra..
More palliative
care needed
Palliative care is woefully inadequate according to neurologist Dr Kathleen Foley
who says, “We need more palliative care than we can imagine”.
Addressing the European Association for Palliative Care Congress at The Hague, Dr
Foley called for recognition that palliative care not only reduces suffering but
forges the kind of relationships between health workers and families that serve as
a framework for delivering effective preventative healthcare information. She also
reported on a study which showed that 46 per cent of patients who had requested
physician-assisted suicide changed their minds when they received substantive
palliative and pain interventions, compared to 15 per cent for whom no
substantive interventions were made.
Other presentations suggested that educating patients about their pain can halve
the pain felt, and that people - in this case consultants - can benefit from training
in breaking bad news.
Palliative care is the active, total care of patients at a time when their disease is no
longer responsive to curative treatment and when control of pain, of other
symptoms and of social, psychological and spiritual problems is paramount.
GPs need more
While the number of patients with autism on a GP’s list is increasing, provision of
effective assessment and referral is not guaranteed.
A survey of GPs by the National Autistic Society found that many GPs feel they lack
the skills and expertise to recognise the possible indicators of autism. As a GP with
an average list size of 2000 could expect to have 18 patients with autism, and a GP
is usually the first point of contact for a concerned parent, the findings suggest
that many children and adults with autism are being denied access to crucial
interventions which are dependent on a diagnosis.
The survey sampled approximately 1.2 per cent of all GP partners in the UK. Four
in ten GPs said they did not have sufficient information to make an informed
assessment about the likelihood of a patient having an autism spectrum disorder,
four in ten were not aware of sources of local support and information, and a
third felt that the diagnostic process was likely to take over a year to complete.
The National Autistic Society would like to see government-sponsored guidance
for GPs and other primary care professionals and autism awareness training
integrated into the curriculum for student doctors.
Funding for aids
The Communication Aids Project has been promised extended funding to take it
through to 2006.
The project allows school aged pupils in England with significant communication
difficulties to get funding for assessment, equipment and training related to
communication technology. Managed by the British Educational Communications
and Technology Agency and funded through the Department for Education and
Skills, referrals are considered where there is evidence of a strategy for ongoing
support for the pupil. The most extensively supplied equipment is voice output
devices followed by laptop computers.
The British Educational Communications and Technology Agency has welcomed
the extension to the project. A spokesman said, “Over the next three years we will
be working with our Communication Aid Project centres to build up the network
of professionals. We will ensure that the use of technology by those with
communication difficulties is seen as integral to raising the standards of teaching
and learning in school. In this second phase of the project, we will increase
training opportunities, provide advice on new technologies and embed an
approach to assessment and provision which will long outlast the Communication
Aids Project.”
wait longer than eight weeks for initial assess-
ment was the first move in harmonising a range
of various caseload management practices across
our district and was therefore an extra benefit of
our first users’ views activity.
At this early point in our users’ views evolution, we
decided it was important users did not meet with
‘their’ therapists. We thought that might inhibit
honesty, and be difficult for the therapist. On a pos-
itive note, we did feed back to those who attended,
our team, fundholders and commissioners.
In the next two years we continued with focus
groups, planning to ensure we covered all geo-
graphical areas of our Trust and adult users as
well as carers of child users. The senior manage-
ment team shared out the work
so, for example, a paediatric
team leader would run a group
for people who had had a stroke.
We continued to report back and
started to work out what
changes we could make.
In 1996 Julia Ritchie and I wrote a
document for our Trust called
‘Informing and Listening’. This
looked at the literature around
users’ views and current practices.
We read and visited, and became
even more convinced that this was
a valuable addition to our work. We became less
anxious about the meetings, and better at encour-
aging people to tell us their story. We learned that
people could hold painful memories of diagnosis
and the realisation of the extent of difficulties
described by us. These were often not anyone’s
‘fault’ - they just were.
Other times, small changes could make a big dif-
ference. For example, feedback from therapists to
parents about group therapy performance is hard
to take if it is felt to be always negative about
behaviour and is delivered in a busy waiting room.
Similarly, it was great that children with disabilities
could come to therapy at a local clinic instead of
only at the Child Development Centre - but not if
the therapist forgets that your child can’t walk
into the room alone and she is left in the waiting
room without help. In both of these instances, par-
ents had concealed their hurt at the time and had
only shared it when asked about their experiences
in what felt like a safe setting for them.
Benefit of hindsight
After three years of our rolling programme of
focus groups, we took stock of what we were
doing. On the plus side we had maintained activity
first remember being asked to think about
users’ views in the late 80’s, when I was told
to produce a questionnaire, evaluate it, and
write a report about it. Thankfully, I can’t
remember many details of the paperwork I
inflicted on the carers I worked with. If I
could remember more, I am sure I would recall a
number of embarrassing errors.
It would have been from my perspective. I knew
what people needed from my service, didn’t I? It
was paper based and therefore not easy to use for
people who are not confident readers and writ-
ers. I am pretty sure I didn’t feed back to those
who were kind enough to respond - just to my
boss. Even worse, I cannot remember making any
changes to my practice afterwards.
Luckily, I was given a second chance
when I moved into management
myself. A colleague was taking her
masters in Health Psychology and she
suggested we start to ask parents of
children using community clinics what
they wanted. We were dealing with
huge waiting lists and at the start of
GP fundholding. It didn’t feel right to
leave users out of the equation. (Can
anyone else recall those discussions
about who our ‘customers’ were and
the linguistic gymnastics that took
place to put GPs and commissioners above users?)
So, in 1994, Julia Ritchie and I ran our first focus
group. We invited 60 randomly selected past and
present users of a clinic in Chatham to an afternoon
meeting. Ten people came, and others rang or
wrote with their views. I saw my first example of a
phenomenon since seen many times - people who
have had cause to complain to our service being the
most giving and energetic in sharing their ideas.
High on excitement
We prepared for the meeting by agreeing that we
principally wanted to know users’ views on waiting
times. Should children be seen quickly and learn
if there is a problem, but then wait for input? Or,
was it better to wait longer but get intervention
straight after assessment? Families were clear that
they wanted to be seen as soon as possible and to
use ‘waiting for therapy’ time to put therapy sug-
gestions into practice. In discussion, it was felt that
eight weeks was a reasonable maximum initial
wait, and Julia Ritchie and I used this in negotia-
tions with commissioners. It was not always a
comfortable meeting, but it was lively and we left
it rather high on the excitement.
Shifting our clinic work so that children did not
I saw my first
example of a
phenomenon since
seen many times -
people who have
had cause to
complain to our
service being the
most giving and
energetic in
sharing their ideas.
Medway speech and
language therapists
have been seeking
users’ views for over 10
years and, more
importantly, changing
services as a result.
From cringe to credit,
Val Levens shares the
wealth of experience
they have amassed.
ìí you want to
• deve¦op coníìdence ìn workìng
wìth users
• encourage reí¦ectìon on
therapy by those ìnvo¦ved ìn ìt
• harness the energy and ìdeas
oí admìnìstrators and
Read thìs
I know what people
need from my service -
and grown our skills and confidence. However,
the importance we had placed on users not meet-
ing with ‘their’ therapist had had paternalistic
effects we were not happy with. We had kept the
work within the senior management team and so
prevented others developing the skills we were so
proud of. We had missed an opportunity to
encourage reflection on the therapy experience
between those actually involved in it. With the
benefit of hindsight this is so obvious!
How could we open up this work throughout
the department? Also, having decided that face
to face was a better format than paper based
methods, were we relying on it too exclusively?
We came up with the idea of a Users’ Views group,
which would involve a representative from each
therapy team in our department (adults, paediatrics
and special needs). This group had a coordinator
and met regularly throughout the year. The team
representative model encouraged whole team dis-
cussion about areas we could explore and was the
prompt we needed to widen our range of action.
Having successfully won a Charter Mark award
for our department, we learned from that process
too. We were not especially good at reporting on
some of the positive things we did - so we started
to produce an annual Users’ Views report. This
enabled us to share our learning with others in
our Trust, and allowed us to find out more about
each other’s projects.
Thinking we could make more use of our
monthly department newsletter to keep Users’
Views a live issue, we began producing a termly
Users’ News attachment that contained snippets
of news, thanks to those who were already par-
ticipating and encouragement to everyone to
think about how they were - or could be -
involved. This may be one of the reasons that the
last few years have seen plenty of volunteering
behaviour. Looking at our review of work in 2002
(figure 1), there are a number of projects that
have been conceived and completed by people in
our teams without any prompting. Written up
projects arrive with post-its saying, “I was doing
this anyway and realised halfway through it was a
Users’ Views project”. People on the Users’ Views
group now are not surprised by calls that start - “I
had an idea .......”, or “What about trying....?”
A member of our administration team said she
would like to be on the group. She contributed
generously and enthusiastically, especially in
prompting discussions about the therapist/therapy
focus of so much of our thinking. For most users,
their first contacts with us are through administra-
tion services, either in person or by telephone or
letter. How much thought were we putting into
these? How could we reduce missed appointments
by manipulating the timing of our appointments
(eight weeks notice or two? - what we actually
found is that, if a client or their carer works, more
notice is helpful but, otherwise, less is best).
One of the strategies we have used is the per-
ception scorecard. This is a page of 10 boxes, with
one at the top. It can be used in a
number of ways; one of the most
useful is to fill in the boxes with an
individual or group, firstly listing 10
things they think are important
about the service. These are then
ranked in perceived order of impor-
tance. Next, the group gives marks
for how well they think we are
managing that issue. It is even more
interesting if those delivering the
service do the same, logging their perspectives.
Process most valuable
Comparison, sharing and exploring perspectives
prompts lively debate. Actions can be agreed on -
which areas to target and how. However, in all of
this it is the process that is the most valuable. We
need to ensure we do not rush for outcomes at
the risk of missing out the gold that is revealed in
getting to them.
It is usual for therapy teams to have different pri-
orities from users. In a way it is both inevitable and
right - we train to identify and manage communi-
cation problems. We are drilled in efficiency and
evidence. That is valuable because no one wants
us to waste money or time. However, we still need
to know what makes contact with us as positive an
experience as it could be and, as the comments in
figure 2 show, our team really sees the benefit.
We think we have come a long way - long
enough to cringe at some of our ear-
lier attempts at least! We are more
relaxed about the work now, and do it
more readily, often without even real-
ising we have. We are not complacent,
though. We are all too aware that
gathering the views of those with
severe communication problems is a
challenge. We want to do it in ways
that are meaningful to the user and
which, in themselves, contribute to the
therapeutic intervention.
Suggestions for bringing users in and the differ-
ent techniques for gathering their views are in fig-
ures 3 and 4. We will continue our rolling pro-
gramme, always looking for new / better / differ-
ent ideas. If you have some you would like to
share, call us - we would like to hear from you.
Val Levens is a speech and language therapy manager
for Medway Primary Care Trust, tel. 01634 813738. She
thanks Julia Ritchie for her inspiration, and writes this
on behalf of Terri Horton, Vicky Kiely, Siobhan Letford,
Susan Tyrrell, Louisa Waters and Janice O’Regan.
We are more
relaxed about
the work now,
and do it more
readily, often
without even
realising we
+. Get started! (You w즦 ¦earn whatever you do.)
±. Nake ìt peop¦e to peop¦e contact. (You can try paper systems ¦ater.)
¡. lìsten more than you ta¦k (and ¦ìsten to the í¦avour as we¦¦ as to the content.)
(. Va¦ue process more than outcomes. (You w즦 ¦earn more ìn the journey than on arrìva¦.)
ç. Keep ìt sìmp¦e. (Oua¦ìty not quantìty. Ask íor a good thìng about contact wìth you, and
íor a bad thìng. You may be surprìsed.)
Users’ vìews: ç steps to better practìce
don’t I?
Figure 1 Projects undertaken in 2002
- Contact with carers of adult patients (what did they think about it?)
- Sensory interaction project (staff feelings about how we planned and delivered the work)
- Parents’/carers’ views on group therapy (community clinic)
- Reflections on a drop in clinic (community clinic)
- Autism group (children’s views of the group)
- Training feedback (“what I did this week” – parent/carer thoughts on introduction of
symbol feedback in a nursery)
- Leaving the unit (children with language disorder thinking about their time with us).
Figure 2 Team views
• “It’s what really matters in planning how we improve things.”
• “I enjoy the opportunity to really ask people what they think.”
• “It seems daunting at first but soon becomes part of everyday working.”
• “Things that other teams do can be really useful to see, because it can often be adapted to
my work too.”
Figure 3 How to meet people you can use
- Talk with people in the waiting room.
- Visit a support group, where people
may feel more confident.
- Invite a few people for coffee (and
cr` eche).
- Arrange to meet someone who has
complained about the service.
Figure 4 Techniques to gather users’ views
- Open discussion
- Guided/interview
- Structured interview
- Perception score cards
- Drawing how you felt/feel
- Using composite pictures to express views
- Feedback slips on reports
- Suggestions box
- Telephone feedback
Whatever you do, include an ‘anything else?’ section.
Girls and Fragile X
The Fragile X Society has produced a conference
report on two talks:
Girls with Fragile X: The Big Picture (educational
needs and social development of girls aged 3 to
18 that will promote a productive lifestyle,
encourage social interaction and lessen anxiety) by
Dr Lesley Powell, and Linking Brain and Behaviour
in young women with fragile X syndrome by Dr
Kim Cornish and Dr Georgina Jackson.
Are we listening?
A resource pack for those interested in listening to
and consulting with children who have communica-
tion support needs has been published following an
18 month project by Sense Scotland in association
with the CALL Centre. It consists of two books, Are
we listening? and A rough guide to listening.
Listening to children with communication support
needs is £27 inc. p+p (£30 outwith UK) from the
CALL Centre, tel. 0131 651 6236,
In-air cursor control
Teaching and lecturing options continue to
expand, the latest tool being in-air cursor control
which in effect allows you to control a PowerPoint
presentation from anywhere in the room using
simple hand gestures.
For suppliers of the Ultra Professional Optical
keyboard and mouse Suite with a 100’ range, see
Stroke information
A quarter of all strokes in England and Wales are
directly caused by smoking. The Stroke Association
has produced a free patient information factsheet on
Smoking and Stroke that offers advice on quitting.
Also available from the Association is a factsheet on
Depression after Smoke, as it is estimated that up to
half of those who survive a stroke will experience
depression at some stage in the first few years.
Tel. 01604 623 933/4.
New from Black Sheep Press
The second edition of Speaking & Listening
Through Narrative, a pack to teach the concept of
‘category’, a game to teach the concept of ‘num-
ber’, TalkinAbout Secondary School to help pupils
discuss the transition to a new school, and a pack
of Visual Cue Cards are new resources in the
Summer 2003 catalogue from Black Sheep Press., tel. 01535 631346
Lifelong learning
A company is positioning its continuing
professional development management training
as a low-cost, flexible option for individuals or
Book news
Bilingual children’s books, CDs and friezes are
available on The
languages covered are Albanian, Arabic, Bengali,
Chinese, Punjabi, Somali, Turkish and Urdu.
Mantra Lingua has translated the Bookstart
guidance tips on book sharing for Czech, Farsi,
Polish, Portuguese, Russian, Serbian, Shona, Tamil
and Vietnamese parents. They are available in pdf
format at
Information on children’s books and resources for
professionals working with young readers are at
The Parkinson’s Disease Society’s new website has
been designed with help from people with the
Dementia training
A flexible toolkit aimed at anyone providing
dementia care training includes 60 icebreakers
and exercises that address key dementia topics,
sessions plans, notes, diagrams and evaluation
Making a difference in dementia care training is
£70 + p&p from the Alzheimer’s Society in
association with Dementia Care Matters,
tel. 01736 33 33 33.
A new book with CD ROM, which includes case
studies and analysis of future trends, suggests
how voluntary organisations can be run more
How to Manage a Voluntary Organisation by
Robert Perrin is £25, see
Free downloads
Crick Software has a new-look website where you
can download free resources for Clicker, Wordbar
and ClozePro.
Anything is possible
The British Stammering Association has
published a new booklet for teenagers who
stammer, with Gareth Gates and the caption
‘Anything is Possible’ on the front. It includes
centres, courses and websites.
A Message for Teenagers Who Stammer is free for
single copies, or 50p each inc. p&p (ten copies for
£4). Tel. 020 8983 1003,
Minority ethnic
The government has been consult-
ing on raising the achievement of
minority ethnic pupils in England
and Wales.
Key parts of the proposed strategy
include improving the training of
school leaders, teachers and staff,
putting a national framework in
place to support bilingual pupils,
and meeting the needs of highly
mobile pupils. The Department
for Education and Skills will
respond to the consultation
process ‘Aiming High: Raising the
Achievement of Minority Ethnic
Pupils’ by setting out its full
implementation plans in the
The consultation document can
be downloaded in full from
w w w . b a s i c - s k i l l s -
Volunteers wanted
An organisation that runs voluntary
health placements in Ecuador,
Ghana, Honduras and India is
encouraging speech and lan-
guage therapists to consider
offering their skills to communities
less fortunate than our own.
Placements with i-to-i are com-
mensurate to experience, and the
organisation also offers training
in Teaching English as a Foreign
Helpline for families
The national freephone helpline
for families of disabled children
has been secured for the next
three years with government
The Contact a Family charity’s
helpline is now receiving 1500
calls a month. Chief executive
Francine Bates said, “We always
knew there was a demand for
information but its [the helpline’s]
success just proves how vital it is
for so many parents throughout
the UK.”
The charity has also published the
latest edition of its Directory of
Specific Conditions, Rare
Disorders and UK Family Support
Groups available as a bound vol-
ume (£35), CD ROM (£75 + VAT)
and online.
Helpline 0800 808 3555, Contact a
Family, tel. 020 7608 8700, extra...
Head Injury Education -
A Group Therapy Manual
Martin van den Broek & Beverley Dayus
ISBN 0 86388 229 3 £24.95
This manual is an additional resource for an
experienced therapist of any discipline already
running rehabilitation programmes for patients
with high level cognitive communication
difficulties following traumatic brain injury. It isn’t
relevant to everyday work in the clinic but rather
to therapists (‘trainers’) who have very high
numbers of these patients (‘trainees’). The manual
includes a review of theory, guidelines on running
groups, outlines of 12 therapy sessions and
photocopiable materials.
The authors suggest that about eight trainees
need to commit to the 12 sessions to make the
group work but this would be difficult in practice.
Additionally, it would be time-consuming to adapt
the material for trainees with other conditions
such as stroke. (In fact the presentation and level
at which the material is pitched makes it
appropriate for training other speech and
language therapists and multidisciplinary team
members in high level communication skills!)
Mahalia Millett and Gunilla de Robeck are speech
and language therapists at Addenbrooke’s
Hospital, Cambridge.
Skills for Daily Living: Social
Speechmark ColorCards
ISBN 0 86388 422 9 £26.95
This set of cards uses detailed line drawings to portray
a wide range of social situations and, usefully, includes
examples of both inappropriate and correct social
behaviour. Often students are required to read quite
subtle indicators such as facial expression and body
posture in order to understand the events illustrated
and so, while younger children can access the material
with adult guidance, the cards still present a
stimulating challenge for older children (year 8 and
An accompanying booklet provides a brief summary of
each situation and, while it provides some ideas on
effective use of the cards, the therapist is required to
use some creativity to get the most from them.
Activities such as role-play and comic strips provide the
opportunity to base a whole session around each of
the 44 cards, potentially making this pack very good
value for money.
Ruth Watson is a speech and language therapist
working at Laleham School in Margate for children
with speech, language and specific learning
Improving Children’s
Poppy Nash, Jackie
Strengelhofen, Jane Brown &
Louise Toombs
ISBN 1 86156 298 5 £35.00
This publication consists of a
manual and photocopiable
worksheets. The manual
describes a short programme of
group therapy (preferably
residential) for able children
with persistent communication
difficulties, and is easy to read,
clear and informative.
The authors aim to teach the
children to take responsibility
for their own communication,
and to use speech and language
appropriate to different listeners
and situations. Self-image,
teasing and bullying, listening
skills, self-monitoring, and
awareness of speech production,
including voice, intonation and
appropriate volume are covered.
The resource materials are
user-friendly and practical.
Ideally, the programme is aimed
at children of average ability,
aged eight years and above,
who are able to reflect on their
feelings and quality of
communication. They would
have persistent communication
difficulties, affecting their
self-image, motivation and social
interaction, such as cleft palate,
or a stammer. The authors argue
that a wider client group would
also benefit.
Good value - a must for
therapists working with the
relevant client group.
Ruth Harrower is a speech
and language therapist working
with primary aged children
with severe speech and
language disorder, autism
spectrum disorder and
complex needs at Meath School
(I CAN).
Management of Communication
Needs in People with Learning
Samuel Abudarham & Angela Hurd (Eds)
ISBN 1 86156 208 X £25.00
The editors have strived for a balance between the
theory and practical aspects of working with this client
group. The usefulness of this book lies in the fact that
it provides a springboard into the spectrum of learning
disabilities without overloading the reader. Instead,
the scope of therapy techniques, service approaches,
and theoretical issues are addressed concisely, leaving
you informed and with up-to-date references for more
detailed reading. Useful case examples are also
provided to illustrate therapy in action. For the
student, this is a worthy resource for getting to grips
with the spectrum of issues connected with the
learning disabilities population. For the newly
qualified therapist, it presents a concise link between
theory and practice that serves as a useful introduction
to working in this area.
Amy Hobson is a newly qualified speech and language
therapist (paediatrics and special needs) with City
Hospitals Sunderland NHS Trust.
Dear Avril,
Can any of your readers help me with their views, ideas
and experiences? My job for the next eighteen months
is to contribute to the development and implementation
of an integrated team approach to therapy services for
children with neuro-developmental delay and their families
in the Livingston area. Initially I will be looking at:
• exploring the use of therapy joint assessment and
documentation and potentially its link to the single
shared assessment process
• paediatric therapy assessment tools and outcome
• collaborating with staff, carers and families to get
their views on the services provided
• exploring and implementing multidisciplinary models
of care.
I hope to write up this work for the magazine in due
Gail Nash
Physiotherapist, Integrated Therapies Project
Tel. 01506 777598 / 777580, e-mail
17 March, 2003
letter to the edìtor
one of our best measures of whether health and
education work well together. Denise Ford, how-
ever, has really run with this. Although working
with parent groups had always been part of the
Kent plan, initially parents were kept at what she
describes as a safe distance. Now that everyone
has moved on in their thinking, parents are
attending training activities and joining in with
discussions - true partnership in action.
The government says its reform of secondary edu-
cation in England will enable a shift from the old
one-size-fits-all system to tailored-made teaching
and learning for every pupil. Plans include com-
mitments to develop partnerships beyond the
classroom with parents, business, universities and
others, and to reform the school workforce by
allowing teachers time to teach and a far greater
role for more trained adults in the classroom. It
seems this can’t come a moment too
soon as the woeful inadequacy of
speech and language therapy at sec-
ondary level was a repeated theme
of the day. Mary Auckland’s work is
at the primary stage - and she
believes a completely different
approach is needed for the secondary
level. Julie Dockrell wants to see
strategic development for Key Stage
3-4 and post 16s, where speech and
language therapy provision is partic-
ularly poor.
Barbara Clarkson and Angela Peel
are one of the few speech and lan-
guage therapist / teacher teams
working with pupils in a mainstream
secondary. The school has a speech
and language resource, mainly for
children who have been in a primary
language unit. Like Mary Auckland, they empha-
sise that teaching metacognitive skills supports
both inclusion and collaboration. They identified
the actions which commonly make up ‘learning
support’ - help, tell, read, write, check, ask, effect, think for - and which serve to iso-
late pupils from their peers and classroom teach-
ers. By introducing four types of lesson covering
skills in learning and independence, and social
skills and problem solving, and adding classroom
observation and modification of teaching, pupils
are actively thinking and problem-solving in
whatever context they find themselves.
Debriefing is an important element - What have
we just been doing? What would have been use-
ful? Who could help you with this? When are you
going to plan? What resources could help you?
coníerence report
clear message from the 7th I CAN con-
ference is that collaboration has to start
somewhere - and talking to each other
does help. With his usual perception,
James Law suggests that people who describe
themselves as ‘working towards’ collaboration
probably don’t talk at all. Ruth Paradice believes
that having a coffee together would be a start for
some. One delegate welcomes the spread of e-
mail, as she finds it invaluable for making initial
contact with colleagues in other professions, and
making it easier to set up face-to-face meetings.
Contact is, however, of limited value if you can’t
understand each other. Mary Auckland finds that
teachers’ knowledge of language development is
poor, so all the other skills they have cannot be
used until this knowledge gap is addressed. Julie
Dockrell’s research highlights split perspectives,
with speech and language therapists striving for
an appropriate diagnosis, and local education
authorities looking for a needs based model. She
asks, are they in conflict, or can they be comple-
To make collaboration count, Barbara Clarkson &
Angela Peel say don’t go to people who don’t
want you. Stick with people who are eager, and
your work will grow and the enthusiasm spread.
Mary Auckland agrees. A designated staff mem-
ber is vital to the programme of empowering
schools which is underway in the Bracknell area,
and she recommends targeting projects on the
really keen teachers within the really keen
A win/win model
What do you do though when, as in
Herefordshire, there is no history of multi-agency
working and no service to mainstream schools?
And where, due to curriculum demands, children
have insufficient time to develop their vocabulary
and language? An Education Action Zone has
been set up to provide ‘additionality’, and this
seems to have provided some of the answers. A
survey before the project found 28 per cent of
children at Key Stage 1 had language problems,
I CANmake
Avril Nicoll
attends the
7th I CAN
rising to 35 per cent at Key Stage 2. In contrast,
following the introduction of the Education
Action Zone, the figure dropped from 25 per cent
at Reception to 6-8 per cent the following year.
The Action Zone educational psychologist Val
Dann and speech and language therapist Judy
Winfield have brought in the Teaching Talking
package and find it a ‘win/win’ model. In addition
to the language gains in the population targeted,
teachers are now more confident dealing with
simple delay, have taken on board the ‘repetition,
repetition, repetition’ mantra, and are using the
‘emerging’ skill category in Teaching Talking to
target consolidation. The clinic-based speech and
language therapy department is receiving better
quality referrals and there is now support for the
recommendations made by their speech and lan-
guage therapists, as teachers and therapists have
a common language which
facilitates discussion.
Julie Dockrell argues that
an oral language curricu-
lum and written policies
would be positive steps,
and that built-in collabora-
tion is a glaring omission
from local education
authority plans for chil-
dren with speech, lan-
guage and communication
difficulties. Along with
other speakers she asks
that we attempt to agree
on terminology for
describing these children
(she counted 17 different
descriptors in the course of
her research), and that the
needs of children with autism are addressed as
well as, not instead of, children with more specific
speech and language difficulties.
In arguing for greater collaborative practice to
benefit children, Gill Edelman commented that,
“professionalism is a very exclusive business”. At
times the business was so exclusive at this confer-
ence that parents rated barely a mention, perhaps
reflecting the prevalent attitude in our education
system compared with clinic-based therapy. Julie
Dockrell notes that local education authority
plans for children with speech, language and
communication difficulties do not discuss the role
of parents. James Law points out that parents
who are engaged early with a system are much
more likely to understand the logic of different
models of service delivery, and that parents are
Initially parents
were kept at a
safe distance.
Now parents are
training activities
and joining in
with discussions -
true partnership
in action.
don’t serve the same purpose as a one or two day
course in a particular approach, and delegates need
to appreciate that and adjust their expectations
accordingly. What they do achieve is to bring
together the people who are driving the change in
the profession, to enthuse and inspire them to find
out more and to keep going, even when the going
gets tough.
If you want to make your collaboration count,
you can audit your continuing professional devel-
opment needs on the I CAN website.
The 7th I CAN conference ‘Collaboration Counts’
was on Monday 3rd March 2003 at the
Commonwealth Centre in London. There were six
main speakers and three workshop sessions where
delegates could choose to attend one workshop
out of five offered. Power Point presentations of
most sessions are at
Teaching Talking (1985) by Ann Locke and Maggie
Beech is available from NFER-Nelson, see
Further information on Speech Link from Derry
Patterson, Speechlink Co-ordinator, Speech and
Language Therapy Department, Medway Maritime
Hospital, Windmill Road, Gillingham ME7 5NY, e-mail
vìn Speakìng, lìstenìng and Understandìng -
Games íor Young ·hì¦dren
Do you need ideas for 5-7 year olds? Written by two speech and language therapists experienced in collaborative working
with mainstream teachers, the graded games and activities in this brand new book need minimal
equipment and can be carried out by therapists, teachers, classroom assistants or volunteers.
Speechmark Publishing ltd is offering a FREE copy to THREE lucky Speech & Language Therapy in Practice readers
(normal price £32.95).
For your chance to win, send your name and address to Speech & Language Therapy in Practice - SLU offer, Su Underhill,
Speechmark, Telford Road, Bicester, OX26 4LQ by 25th July. The winners will be notified by 1st August.
Speaking, Listening and Understanding - Games for Young Children by Catherine Delamain and Jill Spring is available along with
a free catalogue from Speechmark, tel. 01869 244644.
thought out, supported or evaluated. He is
unequivocal - a consultant is an expert practitioner
and a newly qualified therapist does not have the
skills and experience to be put in this position. As
he says, a choice about a consultative model is not
a binary one, but is intimately linked with other
choices. Leaders need to work with birthrate and
population figures and notional caseloads, and to
use evidence rather than policy to drive decision
making. He notes that the push towards equity of
service is resulting in more people getting less, and is
therefore working against evidence based practice.
Denise Ford talked about Kent’s Communication
& Interaction service as being a ‘virtual service’
and I suspect this is something we’re going to
come across a lot more. A difficult concept to
grasp, it emphasises a highly flexible but well
coordinated structure with a clear vision. Val
Dann points out, though, that a ‘virtual team’ can
only work if its members know it exists!
Ruth Paradice called for more strategic develop-
ments, not just grass roots support. Collaboration
that works combines strategic lead with backup on
the ground - hardly rocket science but, in practice,
we know how difficult it can be to achieve, and we
need to be aware of what works so we can do more
of it. Conferences with many short presentations
Shared vision
The importance Barbara Clarkson and Angela Peel
attach to a ‘shared vision’ was also taken up by
Denise Ford, who finds it overcomes the problems
caused by continual organisational change. In
addition, it allows for wider experimentation in
delivery of speech and language therapy, and one
result in Kent has been the production of Speech
Link, a multimedia phonology assessment. Staff
have been so impressed with I CAN’s Joint
Professional Development Framework that there
are plans to use it as the structure for professional
development pathways within Kent across all the
special educational needs dimensions - physical &
sensory, cognition & learning, behaviour, emotional
& social, as well as communication & interaction.
The approach to schools across the Kent county is
one of rights and responsibilities - they have the
right to rapid access to services if they take
responsibility for allocating training time and
assistants. Taking an organised, whole service
approach with leadership is also favoured by Mary
Auckland, and results in the Bracknell area bear
this out: carryover to classroom practice, schools
now feel they have more to offer all children with
special educational needs, listening and attention
groups have led to improvements in behaviour
and learning. As well as commitment from schools
for training, designating staff and protecting
time, this model also depends on cultural change
amongst speech and language therapists, schools
and parents, and Mary Auckland believes we
sometimes underestimate the shifts in thinking
that are required.
James Law supports the need to develop leaders
and for more strategic thinking in our profession.
He cautions against ‘creeping consultancy’, a
move to a model which has not been properly
coníerence report
5 themes for action
1. get talking
2. share a vision
3. develop leaders
4. work with parents
5. teach metacognitive skills
Hot oíí the press!
proíessìona¦ ro¦e
When a person has a
progressive disorder, what
lies behind their social
smiles and reassurances?
How do they feel when
solid, reciprocal social
support networks are
shattered by communication
breakdown? Drawing on
quotes from her qualitative
research, Margaret White
argues that the deep
despair and pain she found
tells us much about the
need for support and why
we should be actively
facilitating and offering it,
even when traditional‘
therapy’ has ended.
f I could still talk properly I’d be more out-
going, as I was before. I could cope with the
physical problems if I could talk to people.
It’s changed my life completely.”
The progressive loss of both communicative and
physical abilities has implications for all aspects of
a person’s life. At many points in the progression,
whether it is fast or slow, the onward march of
deterioration in communication causes feelings of
desperation. As part of a Masters course I carried
out a study into the views of people with pro-
gressive disorders and their carers about the loss
of communication, and what I learned personally
was almost more important than what I learned
academically. There emerged a real understanding
of the sufferers’ deep despair and pain at their sit-
uation, concealed by social smiles and reassurances.
Without exception, all felt that they could cope
with the physical loss if speech had been spared.
Most of the people I talked to had been known
to me professionally for some time - some
months, some years - and I watched as their con-
tact with their world was gradually eroded by the
loss of communication.
“There are only two of us who understand her
reasonably well, and even then we have to
resort to the alphabet chart or the frame, but
they are too slow and she gets very frustrated.”
Communication is about contact. Contact with
groups at work, groups of friends, groups of
acquaintances, groups joined together by interests,
groups joined together by relationships. People
will use communication aids because it gives them
something - but not what they really want.
What they really want is the ability to discuss,
argue, make jokes, sympathise, talk through
problems and emotions. What they want is the
quality of life they had previously. It may not
have seemed a world-shattering lifestyle, but the
more of it they lose, the more precious it becomes.
What they want is a return of not only functional,
but also social and emotional communication.
“The carers are good with her, but she is unable
to tell them things, even simple things such as
her leg in the wrong position, or her neck hurt-
ing, and they don’t have the time to wait for her
to try and use the communication aids.”
Functional communication can help us order
and control our world, but eventually control may
be severely limited or impossible. Werner-Beland
(1980) says she felt the need to control events that
were happening to her - “it is the awareness of
one’s inability to control events that produces fear.”
Wilkinson (1999) also agrees on the importance of
control, because in its absence, “the traveller feels
alone and at the mercy of those who do not hear.”
“But the worst part of it all is not talking. I used
to enjoy company, and having a good gossip.”
Control is only one element of communication.
Functional communication with which to control
our environment is important, but would that
alone make us feel any less despairing? I think it
goes deeper than that. People told me it was
more about being in contact with their world in
the way they had always been.
to offer?

proíessìona¦ ro¦e
Social communication is important because that
is the way we have organised our lives, our
groups, our contacts. It is how we define our-
selves in terms of others and the world around us.
Emotional communication is utilised in times of
trouble. At some point most of us have issues
which we feel a need to discuss, if only to make
sense of them in our own mind. We may talk to
family, friends or even counsellors.
“We used to have friends, but they’ve gone off
now because I can’t talk to them. We used to go
out to relatives’ houses for dinner quite a lot,
but we don’t go now because I can’t talk properly
and it’s too difficult.”
Social and emotional communication are gradu-
ally lost in progressive illness, with the certain
knowledge that they will never return. Initially,
people have to resort to contact at second-hand
through their main carer who, in effect, becomes
their translator, their bridge to the outside world
- and there is no possibility of everyday chat or
emotional confidences with others. Once the
translator is unable to communicate with them,
their isolation is complete.
As a therapist it is very easy to feel daunted by
this. After all, what have we to offer? To answer
we need to take a step back, not to see a
dysarthria needing therapy, but to see the person
with the dysarthria. We can sometimes get too
bogged down in the specific problem without
seeing the overall view. We should not only be
dealing with the problem but with the way this
affects the person, their ‘groups’ and the way
they live their life.
While doing the literature search for my study,
almost all the papers I found which asked people
with progressive diseases about their quality of life
specifically excluded those with communication
problems. Most of the ones dealing with the
dysarthrias were simply about measuring and classi-
fication. Yet one particular piece of research found
that what was most valued by many people with
progressive disorders was a) talking and b) relations
with family and close friends. So perhaps we should
spend more time looking at what is more important
from the patient’s viewpoint than from our own.
“We hope we’re working with it the best way we
can, but every now and again probably she goes
away and cries a little tear and I do the same.”
Benner (1985) stresses the need to look at lived
experience, not just specifics. ‘The experiences of
health, illness and suffering are trivialised by ana-
lytically separating the mind and body, and by
using research strategies that systematically
exclude the lived meanings of those experiences’.
It is vital that we see how people make sense of
their illness and live with it day by day in order to
offer relevant and meaningful input to improve
their quality of life.
Seedhouse (1995) talks about ‘health’, not in a
medical context but in relation to the way people
live their lives, and their ability to achieve their life
goals; a person can be diseased and yet healthy if
the ‘platform’ on which they live their life gives
them the opportunities to achieve their goals. The
only goal many people with severe progressive
disorders have left is to live as full a life as possible
for as long as possible and, if we can find some
way of reducing their isolation in order to allow
this to happen, we will have done our job well.
One of the ways of improving a person’s ‘plat-
form’ is by utilising their system of social support,
something to which most people belong in different
ways. There are as many therapists of all disci-
plines who say support is our job as those who say
it isn’t. Perhaps we ought to define what we
mean by support and look at it more objectively.
There appear to be four areas of social support
(Langford et al 1997):
1. Instrumental - tangible aid or concrete
2. Informational - communication which assists
3. Appraisal - communication which helps the
person self-evaluate, and affirms their decision
4. Emotional - this imparts liking, admiration,
respect, love, and is probably the most
important way in which support is perceived.
“We’ve got a daughter and grandchildren, but
they don’t have much contact with us. She’s got
a brother and sister locally, and another sister in
London, and nobody comes to see her, not even
her mother.”
Social support is described as an exchange of
resources/reciprocal supportive actions, and, where
the patient has supported others in the past, they
will now be supported in their turn. With many
patients, their network of support - their ‘groups’ -
gradually erodes until there are few left who can
provide this reciprocity. Even if they have a large
network where reciprocity has worked for many
years, we know that communication breakdown
can cause the best of relationships to founder.
As therapists we provide instrumental and infor-
mational support in obvious ways, but perhaps
also emotional and appraisal support in not so
tangible form - almost as a ‘by-product’ if you will
- while providing what is seen as being ‘our job’.
When it comes to the stage of being unable to
provide obvious ‘therapy’ we may consider we
have nothing more to offer. However, from the
patient’s viewpoint at that time, emotional and
appraisal support to help them think things
through and make decisions may actually be more
important. That we respect their feelings and
decisions is the way in which their self-esteem and
continuing sense of self is confirmed. Perhaps
there are two ways we can deal with this:
a) supporting and training the network which
exists, to help members deal with the communi-
cation breakdown, and
b) continuing to provide support ourselves.
“I don’t try to speak to people other than the
family because I know they won’t understand,
and I feel frustrated and embarrassed by that. I
think it must be difficult for them, because they
think I’m mental and they don’t know how to
respond. Then that makes me upset and angry
and I know there’s no way round it, so I’d rather
just not get into the situation.”
ìí you want to
• add ¦ìíe to years - or even days
• get maxìmum beneíìt íor your
c¦ìent írom contìnuìty oí care
• ¦earn írom persona¦ reí¦ectìons
on academìc research
Read thìs
It is vital that we
see how people
make sense of
their illness and
live with it day
by day in order
to offer relevant
and meaningful
to improve their
quality of life.
Photos courtesy of the Motor Neurone Disease Association
proíessìona¦ ro¦e
As for reciprocity, my reward is a much deeper
understanding of how the strands of communication
impairment permeate every aspect of life, and I
feel respect and deep admiration for these people
who are coping with unimaginable horrors. Our
worlds are all separate, but interwoven; some
closely, some loosely, but we all ultimately live in
our own world and have to face our own death.
We may all have our chosen preference for how
we die - few of us would choose a progressive dis-
order in which we have to come to terms with a
series of never-ending losses which leave us more
and more at the mercy of others.
“We’ve discussed resuscitation and alternative
feeding and I know she doesn’t want it.”
This can place a burden on
therapists. We need to address
our own beliefs without being
caught up in individual issues of
morality. Offer communication
support within an ethical frame-
work but remain objective.
What is really important is that
our patients be given all infor-
mation as soon as they feel
ready for it, because without it
they relinquish all possibility of
exercising control over their
lives by making their own choices.
Unless this is done while there is
still some form of communica-
tion available to them, there is
no longer even the choice between discussing the
issues or ignoring them. For example, decisions
made about end-of-life issues are not made at
one point in time, but evolve through discussions
over a period of time. Late decisions about these
issues made under stress may not always be the
right ones, and it may be that earlier discussion
and planning while the person is still able to do so
with some degree of control could eliminate
much distress in the terminal phase.
All members of the team should be supporting each
other in this, and providing the same information,
and all therapists who work alone with these issues
should seek out and find their own support. This is
not something which should be managed alone.
“He’s fought this all the way, but he won’t talk
about it. I don’t know what his final wishes are
and that makes it very difficult for me because I
won’t know if I’m doing the right thing or not. I
would advise others in this situation to try to
make them talk about important issues. I was
too emotional at the beginning and I didn’t
realise how important it was.”
The way people cope with a terminal progressive
disorder is largely a result of their personality, and
not everyone will want to discuss it - but everyone
should be given the opportunity.
I acknowledge that all this is often being done
in varying degrees. However, it is often done with
hesitation, and with a feeling that ‘this isn’t my
When communication breaks down or is difficult,
both parties are often feeling acute embarrassment
and guilt. Listeners find problems dealing with
those whose communication is impaired, and the
speaker then feels guilt and self-blame for the
lack of understanding.
“Our next door neighbour comes in less and
less now because she says she feels awful because
she doesn’t know what she’s saying and has to
keep on saying ‘Pardon’? She says she feels a
coward, but doesn’t know how to cope with it.”
As therapists we know communication is a two-
way process but we still put all the pressure on the
person with the problem. What about the other
half of the equation? Perhaps we should spend as
much time - or more - working
with the person’s ‘translator’ and
‘groups’ of communication part-
ners to help them understand and
cope with their feelings of inade-
quacy, as we do trying to help the
person find ways of communicat-
ing. In this way maybe we can
reduce the amount of isolation
the person suffers.
As professionals, we are seen by
patients as having a knowledge of
the disease and an understanding
of how they are feeling. Many
times, I find that patients will talk
to me about things they would
never discuss with their relatives
and friends for fear of distressing them.
One lady recently recalled a stored sentence on
her Lightwriter after her daughter had left the
room, when I asked her how she was really feeling:
“When I tell them I’m wet and they say to me in
that loud voice that I’m not, I want to say I’m not
daft, or deaf, or stupid and my brain is working
fine. I want to tell them to try and imagine what
it is like to have no use in their arms or legs or
body and no speech, and to be looking down a
long dark road with no light at the end.”
These things had never been brought into the
open before, and she had been unable to discuss
her feelings. She may not always wish to, espe-
cially with the family, but she knows that when
she sees me she is free to do so. To me, that is a
valid use of my time, as it would be to every other
member of the team with whom I work.
Talking though feelings with someone who listens
sympathetically while remaining objective will assist
problem-solving, help the patient to self-evaluate
and make decisions, and confirm them in their self-
worth. Sometimes all that is needed to help come
to terms with things is to talk it through with some-
one who understands the problem. That is why the
opportunities to do so must be provided while
some communication is still possible.
“If I had to say how I cope in this situation I
would just say that I use bloody-mindedness to
fight it. I won’t be beaten.”

job’. Because we work closely with people in the
earlier stages of disease, we build relationships
which become important to both, and eventually
speech and language therapists may be one of the
few contacts these people have who do not feel
embarrassed, ashamed or guilty for not under-
standing their attempts at communication.
Sometimes, we may even be the only ones who do
understand them.
“You can’t let it take over all the time, but there
are times when I could break my heart crying for
him. Now, I’ve adjusted to it, because there isn’t
any choice. It’s like having children, isn’t it? You
just mop the sick up and carry on.”
Margaret White is clinical lead for adult
progressive disorders at Mansfield and
District pct, Nottinghamshire, and works as
a member of the multidisciplinary team at
Chatsworth Rehabilitation Centre. This article
is based on a small scale research study
involving in-depth discussions with both
patients with progressive diseases and their
carers. Some quotes are verbatim, while
others are expanded from phrases which were
necessarily brief due to severe communication
problems. In all cases the meaning of the
communication was validated by the patient.
Benner, P. (1985) Quality of life: a phenomenolog-
ical perspective on explanation, prediction, and
understanding in nursing science. Advances in
Nursing Science 8 (1) 1-14.
Langford, C.P.H., Bowsher, J., Maloney, J.P. & Lillis,
P.P. (1997) Social support: a conceptual analysis.
Journal of Advanced Nursing 25 (1) 95-100.
Seedhouse, D. (1995) Fortress NHS: A philosophi-
cal review of the NHS. John Wiley & Sons.
Werner-Beland, J.A. (1980) Grief responses to long
term illness and disability. Reston Publishing Co USA.
Wilkinson, S. (1999) Schering Plough Clinical
Lecture. Communication: it makes a difference.
Journal of Advanced Nursing 22 (1) 17-20.
White, M. (2001) A qualitative study of the views
and perceived needs of adults with progressive
neurological disorders and their carers: A focus on
communication. Submitted in part fulfilment of
the regulations for the MSc CPD (Health)
University of Greenwich (Unpublished).
Lightwriter is available from Toby Churchill Ltd,
•Do l know the dìííerent socìa¦ groups my
c¦ìent ìs part oí, and see therapy ìn thìs context'
•Do l oííer ìnstrumenta¦, ìníormatìona¦,
appraìsa¦ and emotìona¦ support to c¦ìents
as approprìate'
•Do l seek support írom íe¦¦ow team members
and other sources when my work ìs
Many times, I find
that patients will
talk to me about
things they would
never discuss with
their relatives and
friends for fear of
distressing them.
nature of the illness means that constant adapta-
tions are required. Unfortunately, in many cases,
equipment takes so long to obtain that its win-
dow of use is past before it arrives.
Although at the moment I continue to enjoy a
reasonable quality of life I live in constant fear of
what the future may hold, and this only adds to
the stress caused by the illness. It may well be that
I would never opt for Assisted Suicide if it were to
become available. However, knowing the option
was there would alleviate much of my anxiety and
be a source of great comfort.
I would like to say thank you to all those who
have been involved in my care. You really do
make a difference and I hope that your support
will continue to make my life bearable in the
future, however long that is!
The Motor Neurone Disease Association for
England, Wales and Northern Ireland is at PO
Box 246, Northampton NN1 2PR, tel. 01604
250505, fax 01604 638289, helpline 08457
626262, The
Scottish Motor Neurone Disease Association
is at 76 Firhill Road, Glasgow G20 7BA, tel.
0141 945 1077, fax 0141 945 2578,
David Parker died aged 54 in March 2003, some
four years since being diagnosed with Motor
Neurone Disease, and only weeks after writing
this article.
proíessìona¦ ro¦e
• Do we have a po¦ìcy to make a¦¦
c¦ìents aware oí re¦evant vo¦untary
• Do we have a we¦¦-managed system
íor accessìng and adaptìng equìpment'
• Do we oííer as much contìnuìty oí
care as we can'
was diagnosed with Motor Neurone Disease
in 1999. I am 54 years old and the illness has
now taken away the use of my arms and legs
and left me unable to speak.
If only I could would all be bearable
The loss of my voice must be the hardest thing
to take. So much I want to say to people (both
nice and sometimes not so nice), and I can only
grunt and nod like an imbecile. This is why continu-
ity of care is important; a carer that is familiar with
my needs makes it easier and less distressing for
both me and the carer. There is nothing worse than
not being able to let someone know what is wrong
- it leaves them feeling they haven’t done their job
properly, and me with the problem unsolved.
If my voice had remained unaffected I would
probably have been able to continue working, thus
keeping my brain occupied at least. Nevertheless I
consider myself lucky that I still have a reasonable
quality of life thanks to the wonderful support I
receive from my carers, nurses, physiotherapist,
speech and language therapists, aromatherapist
and the Motor Neurone Disease Association, who
are always there when you need them.
Another thing that makes my life bearable is my
computer which I am able to operate by a button
that I squeeze between my knees thanks to a
clever piece of software called Easy Keys that was
supplied by the Motor Neurone Disease
Association. In addition to written communica-
tion I am able to use e-mail, send and receive
faxes, read books and even shop online. I am also
able to manage my finances and pay my bills
using internet banking. This all takes a lot of time
and effort but, when you can’t do a lot for your-
self, what you can do becomes your only mission.
The problem with Motor Neurone Disease is
that you never know how long you have got left.
As a result, I have now celebrated my last
Christmas four times.
Although I can hardly move a muscle, people
keep telling me that I look well - and I do feel well
most of the time. Before I had Motor Neurone
Disease I smoked heavily, drank too much and
lived on a diet of junk food and stress. Now I do
not smoke or drink and live on a healthy diet. In
fact, it is likely that if I had not got Motor
Neurone Disease I would be dead by now.
I feel that it is important to take one day at a
time and make the most of whatever ability you
have left in the knowledge that things will be
worse in a month’s time. The rapidly progressive
So much
to say
In sharing his experience
of Motor Neurone
Disease, David Parker
wanted to raise
understanding among
professionals of the
positive things they can do
to support people affected
by a progressive disorder.
news extra...
Hearing concerns
A charity for hard-of-hearing people in the UK is
taking the opportunity of its 50th anniversary to
publicise its work.
Hearing Concern is a volunteer led organisation
whose main objectives are to provide advice,
information and support, to promote communica-
tion access and to raise public and professional
awareness of the issues associated with hearing
loss. Their chief executive says, “Research shows
that as a result of an ageing population the num-
ber of people experiencing hearing loss will
increase by as much as 20-25 per cent by 2015.
Furthermore, noise induced hearing loss could
exacerbate this figure. Hearing Concern is dedi-
cated to addressing the needs of this increasing
group of people.”
Hearing Concern tel. 020 8743 1110, www.hear-
Stroke developments
The All-Party Parliamentary Group for Stroke held
its inaugural meeting earlier this year. MPs were
concerned to hear about continuing variations in
stroke care provision across England and Wales
and will be asking parliamentary questions about
Meanwhile, the Stroke Association has announced
that, as current resources plans for stroke are often
based on information that is 20 years old, it will be
funding a £180,000 population based study.
Researchers will study incidence, reoccurrence and
outcome of stroke in a large population and results
will inform planning of stroke services and preven-
tative strategies.
The Stroke Association has moved to Stroke
House, 240 City Road, London EC1V 2PR.
Telephone numbers remain the same including
the switchboard on 020 7566 0300. The National
Stroke Helpline number is 0845 30 33 100.
Making decisions
A consortium of twenty voluntary organisations is
calling on the government to make parliamentary
time for mental capacity legislation in England
and Wales.
The Making Decisions Alliance wants to protect
people who cannot make decisions, or who need
help to make decisions about their money, health
and welfare. It believes the clear rights set out in
Scottish legislation in 2000 would benefit profes-
sionals, patients and carers. It is calling on the
government to define what mental capacity is,
enable people to make as many of their own
choices for as long as possible, and ensure people
have access to support to help them make and
communicate their decisions. In addition, it wants
protection for people who cannot make their
own decisions and for people to be able to make
plans for the future while they are still able.
Member organisations include the Alzheimer’s
Society, The Down’s Syndrome Association,
Mencap, Scope and the Stroke Association.
person centred p¦annìng
orn in 1920 and in institutional care
since the age of 12, Robert had
grown up with dysarthria associ-
ated with cerebral palsy. When he
suffered a stroke in 1995, the prog-
nosis was not encouraging. The
complex interaction of cerebral palsy, ageing and
a stroke meant he had muscle weakness and poor
voluntary control of oral and pharyngeal struc-
tures, his respiration was shallow and weak, he
was unable to receive necessary nutrition or
hydration orally and he was medically unstable.
As a determined man, who considered his eating
and drinking to be valuable skills that marked his
independence, dysphagia was more of a blow to
Robert than the loss of his mobility. Due to his per-
sistence and positive outlook, the multidisciplinary
team members were challenged to provide a
range of support, which proved worthwhile.
Interested in interaction
Robert was described as ‘mute’ when he arrived
at the Royal Scottish National Hospital at the age
of 35. Thirty two years later, in 1982, he was
referred to speech and language therapy by nurs-
How good are you at
person centred planning
and reflective practice?
Professionals were put to
the test when Robert, who
already had eating and
drinking limitations due to
cerebral palsy, suffered
dysphagia following a
stroke at the age of 75.
But, three years later, Robert
had had his PEG removed,
was enjoying his porridge
again, and beginning a new
life in a community
placement near his family.
Here, Lorraine Speirs tells us
how he did it.
ìí you •íace peop¦e wìth acute/
chronìc / progressìve
•want to be responsìve
rather than prescrìptìve
•contìnue to be
surprìsed by c¦ìents
Read thìs
ing care staff for support in developing communi-
cation skills. Brief information states that he was
alert and interested in interaction, non-verbal but
with a range of appropriate vocalisations. He was
reported to be equally sociable with nursing care
staff and the 20+ other residents in his ward. He
was prescribed medication to reduce saliva pro-
duction as he had poor lip seal and limited tongue
control that resulted in drooling.
From referral in 1982 to 1988, Robert was sup-
ported to develop his expressive skills using
Makaton signing with limited success due to his
physical limitations. By 1989, he was conveying his
messages using natural gesture with some
Makaton signing and facial expression, and was
introduced to a voice output communication aid.
An Exeter lip sensor was brought in for eight
weeks in November 1989 after a request from
Robert to help manage his saliva. Robert made
excellent progress by increasing awareness of his
oral limitations and exercising regularly. After
regular blocks of therapy to develop his expres-
sive skills, Robert progressed from an Introtalker
to ORAC communication aid in December 1994.
He was able to use this effectively to request,
comment and tell jokes.
In November 1995, after a couple of chest infec-
tions, Robert was admitted to the local acute hos-
pital with pneumonia, congestive heart failure
and a stroke. After six days he was discharged
with a nasogastric tube in place as this acute
episode had left him without a swallow. Robert
was very weak and in low mood. His mouth
looked dry and no dry swallow was observed in
over three minutes. He was unable to swallow on
request and not alert enough to attempt further
assessment. Seven days after his stroke he was
unable to approximate lip seal or to move his
tongue on request. Gentle stimulation with a ster-
ile swab produced slight elevation of the soft
palate but the gag and swallow reflexes were
absent. Robert had problems in the preparatory,
oral and pharyngeal stages of swallowing.
Oral feeding was unsafe. The dietitian and nurs-
ing care staff established a nasogastric tube feeding
protocol. I visited Robert every two days to assess
any change and, after two weeks, Robert was still
unable to produce a dry swallow despite attempts
at stimulating oral sensation by thermal stimulation
(Langley, 1988). After discussion with more experi-
enced colleagues and the suggestion that perhaps
an automatic swallow response could be triggered
by a bolus in Robert’s mouth, a half teaspoon of
iced water was attempted. This caused a great deal
of coughing but did not trigger a swallow.
The team felt Robert’s pre-morbid dysarthria,
Oats not
Panna Chavda Laura Helsby
person centred p¦annìng

susceptibility to chest infections, general physical
weakness and absence of swallow were evidence
enough of his high risk of aspiration without video-
fluoroscopy. By this time the nasogastric tube had
had to be replaced twice. We agreed a multidisci-
plinary meeting, which included Robert, to discuss
options for long-term support.
Although unhappy and weak, Robert accepted
that he was not able to eat or drink safely and
agreed to be assessed for suitability to have a percu-
taneous endoscopic gastrostomy (PEG) fitted. After
explanation of the details and times of tube feeding,
Robert expressed concern that he would miss his
daily activities, so the dietitian agreed to work with
ward staff to rearrange tube feed times accordingly.
Lifted spirits
Despite lack of dentition, a programme of oral
hygiene was recommended to promote oral
health. This included swabbing Robert’s gums
and tongue to remove any residue and moisten-
ing his lips with a lip balm. Within a week the
ward requested a reassessment of Robert’s swal-
low as his care leader reported he had observed a
swallow only seconds after swabbing Robert’s
mouth. Laryngeal movement and two incomplete
swallows were observed after
brushing and Robert was able to
cough and attempt a dry swallow
on request. This slight improve-
ment lifted Robert’s spirits consid-
erably and the therapist demon-
strated the icing and brushing
procedures to nursing care staff
who agreed to work it into
Robert’s oral hygiene time.
Nursing care staff were deter-
mined to carry out any procedures
to try to stimulate a swallow and
kept a tally of swallows observed. I reviewed this
weekly and, although his swallow was re-emerg-
ing, Robert was still unsafe for oral intake.
A year later, by January 1996, Robert was gaining
weight and strength. During weekly reviews he
was now able to push a teaspoon out of his mouth
with his tongue, but still not able to produce a
consistent swallow. The continued efforts of nurs-
ing care staff and the speech and language thera-
pist were bolstered by Robert’s insistence on carry-
ing out his exercises three to four times a day.
Aged 76, Robert had his PEG fitted in February
1996. He was physically improving but the realisa-
tion that he may not taste or choose food again
contributed to his depressive feelings. In an
attempt to address some of his isolation and loss,
Robert had his PEG feed at mealtimes to help him
experience the associated smells and activity.
Russell & Hill (1992) and Scope (2000) discuss such
issues as being major contributing factors to the
quality of life and self-worth of a person experi-
encing feeding and swallowing difficulties.
By July 1996, Robert was attending a weekly
communication group when he indicated he
wanted to try to taste things again. Icing and
brushing exercises had been carried out daily at
Robert’s insistence and he now had some limited
control of his tongue and could produce two to
three swallows a few minutes after the exercises.
Robert was given tastes of lemon, grapefruit and
chocolate (his favourite) on swabs after each
exercise session and, after one month clear of
chest infections, was able to tolerate half tea-
spoon tastes of thick yoghurt - up to a maximum
of three teaspoonfuls at each sitting. Although
more physically limited since his stroke, he was
able to feed himself.
This continued until April 1997 when Robert was
being considered for a community placement and
was anxious to be able to eat more. As he had
experienced no chest infections and was gaining
weight, it was agreed to increase food tastes with
a dysphagic diet and liquids thickened to a double
cream consistency. Robert was
advised to be cautious and build
up oral intake slowly along with
his ability to control his swallow.
He was delighted.
Within a month Robert had
gained sufficient weight that his
PEG feed was reduced to less than
a third of his daily nutritional
need. He had experienced one
chest infection, which cleared up
with a course of antibiotics.
Since his stroke, the medication
to reduce saliva had been withdrawn. Having
returned to oral feeding, Robert had experienced
an increase in drool during and after eating and
was highly aware of this. Reluctant to reduce oral
moisture or the beneficial effect saliva has in
assisting digestion, he was helped to manage this
by verbal prompts to swallow before and after
each mouthful and by keeping a small hand towel
at the side of his wheelchair. He continued to
maintain a satisfactory weight. Icing and brushing
was now replaced by swallowing practice with a
dysphagic diet three times a day and thickened
liquids. Robert no longer needed nutritional sup-
port from the PEG and it was removed in August
In February 1999, after a number of visits and
training sessions with new carers, Robert moved
to a community placement near his family after
44 years in hospital.
Significant factors
Robert’s motivation and the dedication of nursing
care staff were significant factors in the successful
outcome. The accessibility of the on site speech
and language therapist and professional support
from more experienced therapists within the
learning disabilities team also had an impact on
decision making and intervention strategies.
Although there is limited literature on return to
oral feeding after PEG in the learning disabled
population, Langmore et al (1998) and Logemann
(1983) discuss interesting comparisons “between
the elderly and learning disabled” with regard to
dysphagia. These client groups can share a number
of risk factors, which indicate their vulnerability to
swallowing difficulties.
Normal ageing produces significant physiological
changes in swallowing function. Poor dentition can
decrease chewing ability, reduced muscle strength
can affect palatal pressure and lip seal, and
reduced airway closure lengthens swallowing
apnoea time. Less efficient chewing takes longer to
prepare a bolus, which is then poorly controlled.
This can result in oral or pharyngeal spillage.
Around the age of 70 years, overall efficiency of
the swallow decreases which can result in the
need for a second swallow to clear residual mate-
rials, an indication of the reduction in flexibility of
neuromuscular control. Intensity of taste and
smell also reduce and some medications leave an
unpleasant taste, which can result in a lack of
interest in eating and drinking. The result can be
weight loss and an increase in susceptibility to fur-
ther medical complications.
Logemann (1993) describes a higher risk of
oesophageal dysfunction and acquired oropha-
ryngeal disorder when the ageing person experi-
ences a stroke or has a degenerative condition
such as Parkinson’s.
In addition to the normal effects of ageing, a
person with cerebral palsy experiences increased
respiratory system difficulties with greater suscep-
tibility to pulmonary disorders, slower reflexes
and slower processing of information by the brain
(Scope, 2000).
Can the effects of premature ageing be seen in
people with learning disabilities who have cere-
bral palsy? It seems possible that a body already
stressed by the limiting effects of cerebral palsy
would exhibit muscle fatigue, loss of compensatory
strategies and reduced flexibility. But what impact
has the close support of carers and involvement of
professionals in the early identification of such
so simple
We agreed a
meeting, which
included Robert,
to discuss options
for long-term
Clarke, M. (1999) To eat or not to eat. Bulletin of
the Royal College of Speech & Language
Therapists 562: 7-8.
Langley J. (1988) Working with Swallowing
Disorders. Winslow Press.
Langmore, S.E., Terpenning, M.S., Schork, A.,
Chen, Y., Murray, J.T., Lopatin, D. & Logemann,
J.A. (1983) Evaluation and Treatment of
Swallowing Disorders. College Hill Press.
Logemann, J.A., Shananhan, T., Rademaker, A.W.,
Kahrilas, P.J., Lazar, R. & Halper, A. (1993)
Oropharyngeal Swallowing after Stroke.
Dysphagia 8: 230-234.
Lucas, C. (1998) Dysphagia: does SLT input make a
difference? Bulletin of the Royal College of
Speech & Language Therapists 554: 10-11.
Park, C., Wyatt, R. & O’Neill, P. (1997) Chronic dys-
phagia: The case for periodic reviews. Bulletin of
the Royal College of Speech & Language
Therapists 541: 13-14.
RCSLT (1996) Communicating Quality 2. Royal
College of Speech & Language Therapists,
Russell, A. & Hill, P. (1992) Transitional Feeding -
The Team Approach (2nd ed). JFC Foundation,
SCOPE (2000) An Introduction to Ageing and
Cerebral Palsy.
Scottish Intercollegiate Guidelines Network (SIGN)
(1997) Management of Patients with Stroke, Part
III: Identification & Management of Dysphagia. -
due for updating 2003.
Exeter Lip Sensor - source not known
Introtalker -
Makaton Vocabulary Development Project -
Having experienced a life filled with
many challenges and achievements,
Robert died in February this year, a
month after his 83rd birthday. I will
remember his gentle nature, hearty
laugh and his delight at being reunited
with his family in his later years.
person centred p¦annìng
yet his potentially life threatening feeding prob-
lems were assessed, identified, non-oral feeding
implemented and no further support was offered
to re-learn any possible feeding skills.
In Lucas (1998), two PEG fed patients had speech
and language therapy reviews and were offered
swallowing therapy. Both returned to oral feed-
ing, one while still in hospital and the other two
months after discharge. This supports Park et al
(1997) who stated that, for patients with severe
swallowing difficulties, speech and language ther-
apy input and ongoing review make a significant
difference to management and outcome. The
timescale is relatively short compared with the
case of Robert, one of the differences in working
with people with learning disabilities.
Communicating Quality 2 (RCSLT, 1996) states
that the speech and language therapist should
not make the management decisions around dys-
phagia alone and neither should they be made
lightly by the multidisciplinary team. Robert was
able to express his desire to
taste and drink again and con-
tinued to do so when he was
advised that it wasn’t safe for
him to be fed any other way
than through a PEG. Neither
Robert nor his care staff were
ready to consider he may
never swallow again. Lucas
(1998) identified the need to
provide manageable informa-
tion at the appropriate time.
By agreeing stages of interven-
tion to achieve a possible swal-
low - structured, simple,
sequential protocols as his oral
control strengthened - we
were able to respect Robert’s
wishes to attempt to eat
again. Staged support, as and
when it was required, reduced
dependence on the speech
and language therapist while protecting Robert
from the risk and fear of aspiration. If the client
chooses a different course from that recom-
mended by professionals, this should not influ-
ence the quality of care he subsequently receives.
In this way he actually achieved his goal, which we
had not considered a possible prognosis.
From practice with multidisciplinary teams and
experience gained from working with Robert, I
conclude that regular assessment after PEG is an
essential part of dysphagia management whether
the chosen strategy is rehabilitation or a combi-
nation of two methods of feeding. As this study
demonstrates, through determination and consis-
tency of support Robert was able to enjoy his por-
ridge again.
Lorraine Speirs is a speech and language therapist
in Forth Valley. This article is based on a case study
prepared for the Manchester Advanced (Level 3)
Dysphagia Course, ALD Module.
• Do we see tìme sìnce onset as a
potentìa¦ advantage íor therapy'
• Do we recognìse that comp¦ex
causes need comp¦ex so¦utìons'
• Do we ensure access to
proíessìona¦ support'

changes? Robert’s symptoms emerged over a pro-
tracted period of time, which may have been
accepted by carers as the result of ageing on an
already affected swallowing ability, rather than
signs of an additional acute episode.
True test
Assessment and management of dysphagia
should be a true test of person centred planning
and reflective practice, as decisions made have far
reaching consequences. Non-oral feeding has
implications for quality of life, sociability and self-
esteem, not only for the person concerned, but
also impacting on carers and family.
Logemann (1983) describes an interesting hier-
archy of intervention with compensatory strategies,
looking first at postural changes then heightening
sensory input and finally changes in the way a
person is fed. From clinical experience, alteration
of food consistencies along with positioning
would be addressed initially to seek to reduce the
risk of aspiration or choking.
This would be reinforced by
environmental support such as
carer training and other inter-
vention either indirect or direct.
Supplements/alternatives have
an initial cost. Would the same
effects be obtained by modifying
posture and environment and
reviewing over time? I have con-
cerns that time may compound
health issues when the client is
already vulnerable. Due to the
combination of difficulties
Robert presented, the multi-
disciplinary team felt the first
priority was to find an answer
to his nutritional needs.
Although such immediate inter-
vention can remove some ele-
ment of control and responsibil-
ity from the client and carers,
we felt that, once he was stronger and more med-
ically stable, he would be better able to participate
and benefit from further intervention. For Robert,
this method of intervention proved beneficial.
The experience of working with Robert also
raised a number of questions about how speech
and language therapists deal with non-oral feed-
ing after a PEG is fitted. Do we perhaps think we
have little to offer? If, after a stroke, aphasic dif-
ficulties are identified, intervention is offered to
help the client re-learn functions. Yet, although
45 per cent of cerebrovascular accident admis-
sions to hospital have some degree of dysphagia
detected and reduced nutritional status and res-
piratory problems are associated with increased
death rate compared with stroke and no dys-
phagic problems (SIGN, 1997), most involvement
in dysphagia after a stroke and PEG relies on
annual assessment and little else. Clarke (1999)
described support given to her husband to re-
learn everyday functions like brushing his teeth,
assessment after
PEG is an essential
part of dysphagia
whether the
chosen strategy is
rehabilitation or a
combination of
two methods of
ìí you want to understand more about
• dìsabì¦ìty theorìes
• barrìers ìn socìety
• enab¦ìng c¦ìents
Read thìs
ìnequa¦ìty serìes (¡)
efinitions and understandings of dis-
ability have changed radically over time.
Traditionally, disability was perceived as
the tragic problem of unfortunate indi-
viduals whereas now disability is often seen as a
form of social oppression and social exclusion
(Oliver & Barnes, 1998). But what exactly do we
mean when we use the term, ‘disability’?
In 1980 the World Health Organisation published
the International Classification of Impairment,
Disability and Handicap. This classification adopts
a three-fold typology, outlined in
figure 1.
Although the international
classification is commonly
regarded as comprehensive and
is widely used across the world, it
is not unproblematic. Firstly, the
typology assumes the existence
of psychological and physical
‘normality’ as well as the ability
to measure and define it.
However sociologists are critical
of this, arguing that normality is,
in fact, very difficult to define
and is often dependent on a
range of situational, temporal and
cultural factors; that is, what might
be regarded as ‘normal’ in one
time and place may be regarded
as ‘abnormal’ in another. Secondly,
implicit within the typology is a
causal relationship between
‘impairment’ and ‘handicap’.
Thus, people with impairments
become objects of intervention,
therapy and rehabilitation in the
quest for ‘normalcy’. However, as
Oliver & Barnes have contended,
although intervention and reha-
bilitation are sometimes appro-
priate, ‘it is increasingly argued
by a growing number of disabled
people that it is quite inappropriate
to treat disability’ (1998, p.15).
Figure 2 highlights some points to consider with
respect to definitions of disability.
Disability theorists have been critical of the
World Health Organisation classification which
has been described as extremely ‘individualistic’,
and a new definition, a social model of disability,
has emerged (Oliver, 1983). A social model of dis-
ability rejects the causal relationship between
impairment and handicap, arguing that it is not
Half as likely to go to
university, half as likely
to get qualifications,
half as likely to get a job -
the Disability Rights
Commission campaign
asks, is a disabled person
only half a person? Sarah
Earle suggests a ‘cure and
care’ approach can
contribute to the process
of disablement so in this,
the third of four
on inequality,
she explores
how we can
break down
barriers and
at the same
time play an
important role
in treatment
impairment per se which is disabling, but the
environment in which an individual finds him or
herself. A social model also seeks to move away
from a medical model of disability which focuses
on the ‘cure and care’ (Finkelstein, 1993) of peo-
ple with impairments. The Union of the Physically
Impaired Against Segregation thus describes dis-
ability as, ‘the disadvantage or restriction caused
by a contemporary social organisation which
takes no or little account of people who have
physical impairments and thus excludes them
from the mainstream of
social activities’ (1976, p.14).
More recently, the 1995
Disability Discrimination Act
has defined a disabled person
as somebody who, ‘has a
physical or mental impair-
ment which has a substantial
and long-term adverse
effect on his ability to carry
out normal day-to-day
It is difficult to establish a
precise demography of dis-
ability and inequality in
Britain, particularly given the difficulties with
defining ‘disability’ and the fact that definitions
have changed over time. Thus, any attempt to
quantify the numbers of disabled people must be
treated with caution. However, in 1999, the
Disability Rights Task Force suggested that
approximately 8.5 million people in Britain came
under the definition of disability provided by the
Disability Discrimination Act (1995). Recent fig-
ures indicate that one in five of all people of
working age are disabled and that 3.7 million of
these are men and 3.4 million are women (Smith
& Tworney, 2002).
Social oppression
Theorists argue that disability is a form of social
oppression and that disabled people experience
considerable inequality in all areas of social life,
including: education, health care, employment,
housing, and transport (Barnes et al, 1999). For
example, whilst 81 per cent of non-disabled peo-
ple of working age are in employment, this
applies to only 48 per cent of disabled people
(Smith & Tworney, 2002). Furthermore, 50 per
cent of disabled people who are not in work
would like to be but are unable to find suitable
employment. Research also shows that disabled
people in work are more likely to be in manual
normality is,
in fact, very
difficult to
define and
is often
dependent on
a range of
temporal and
cultural factors

Disability and stigma:
an unequal life
Figure 2 Definitions of disability: thinking
• to what extent is the World
Health Organisation definition
of disability helpful to speech
and language therapists?
• are speech and language
therapy clients ‘disabled’?
• do you, and your clients, find
the label of ‘disability’ a helpful
Figure 1 International Classification of
Impairments, Disabilities and Handicaps (World
Health Organisation)
any loss or abnormality of
psychological, physiological or
anatomical structure of function;
any restriction or lack (resulting
from an impairment) of ability to
perform an activity in the manner
or within the range considered
normal for a human being;
a disadvantage for a given
individual, resulting from an
impairment or disability, that
limits or prevents the fulfilment of
a role that is normal (depending
on age, sex and social and cultural
factors) for that individual.
Source: Wood (1980, p.29)
bodies...Common to most rehabilitation work, however, is
a set of moral ideas about what bodies should be like.
(Seymour, 1998, p.20)
Others argue that, whilst it is important to recognise that
disability is a form of social oppression, it is also important to
‘bring back impairment’, and recognise the significance of
this for individuals:
The experience of impairment is not always irrelevant, neu-
tral or positive... How can it be when pain, fatigue, depres-
sion and chronic illness are constant facts of life for so
many of us? ... for many disabled people personal struggle
related to impairment will remain even when disabling
barriers no longer exist.
Crow (1996, p.58)
This implies that although a ‘cure and care’ approach can
be disabling, there is a role for treatment and rehabilitation
in which speech and language therapists can play an impor-
tant part (figure 4).
Dr Sarah Earle is Senior Lecturer in Health Studies at
University College Northampton. Address for correspon-
dence: Centre for Healthcare Education, Boughton Green
Road, Northampton NN2 7AL, tel. 01604 735500, e-mail
Bagilhole, B. (1997) Equal Opportunities and Social Policy.
London: Longman.
Barnes, C., Mercer, G. & Shakespeare T. (1999) Exploring
Disability: A Sociological Introduction. Cambridge: Polity.
Begum, N. (1996) General Practitioner’s Role in Shaping
Disabled Women’s Lives. In: C. Barnes & G. Mercer (eds)
Exploring the Divide: Illness and Disability. Leeds: The
Disability Press.
Bowe, F. (1978) Handicapping America. New York: Harper &
Burchardt, T. (2000) Enduring economic exclusion: disabled
people, income and work. London: YPS.
Crow, L. (1996) Including All of Our Lives: renewing the social
model of disability. In: C. Barnes & G. Mercer (eds) Exploring
the Divide: Illness and Disability. Leeds: The Disability Press.
Disability Rights Task Force (1999) From Exclusion to
Inclusion: Final Report of the Disability Rights Task Force.
[available from:].
Fawcett, B. (2000) Feminist Perspectives on Disability.
Harlow: Pearson Education.
Finkelstein, V. (1993) Disability: An Administrative Challenge.
In: M. Oliver (ed.) Social Work: Disabled People and Disabling
Environments, Research Highlights in Social Work 2. London:
Jessica Kingsley.
Goffman, E. (1963) Stigma: Notes on the management of a
spoiled identity. Englewood Cliffs, NJ: Prentice Hall.
MacRae, H. (1999) Managing courtesy stigma: The case of
Alzheimer’s Disease. Sociology of Health & Illness 21 (1) 54-
Oliver, M. (1983) Social Work with Disabled People.
Basingstoke: Macmillan.
Oliver, M. & Barnes, C. (1998) Disabled People and Social
Policy: From Exclusion to Inclusion. London: Longman.
Seymour, W. (1998) Remaking the Body: Rehabilitation and
Change. London: Routledge.
Smith, A. & Tworney, B. (2002) Labour market experiences of
people with disabilities. Labour Market Trends 110 (8)
London: ONS.
UPIAS (1976) Fundamental Principles of Disability. London:
Union of the Physically Impaired Against Segregation.
Wood, P. (1980) International Classification of Impairments,
Disabilities and Handicaps. Geneva, WHO.
ìnequa¦ìty serìes (¡)
occupations and have lower than average earnings. Indeed, 50
per cent of all disabled people are living in poverty, affecting a
substantial number of children either directly or indirectly
(Burchardt, 2000). Evidence also suggests that there is inequality
in education at all levels and that disabled people are more
likely to have no qualifications than non-disabled people
(Disability Rights Task Force, 1999). They are also more likely
to live in poorer housing and have less than adequate access
to transport and leisure facilities (Bagilhole, 1997).
For disability theorists, inequalities are produced by the
‘disabling barriers’ within contemporary societies which pre-
vent or hinder disabled people from full participation within
society. Bowe (1978) has suggested six principal barriers:
architectural, attitudinal, educational, occupational, legal
and personal. Sociologists would argue that these barriers
are both structural and material, as well as cultural.
Sociologists also argue that disabled people experience
‘stigma’, which is a powerful discrediting label that can
change and ‘spoil’ the way in which the individual is per-
ceived. This idea was proposed by the sociologist Erving
Goffman (1963), who argued that there are two types of
stigmatising condition. Firstly, discrediting conditions which
are readily obvious to others, for example; eczema, psoriasis,
and stammering. Secondly, discreditable conditions, those
that are usually not visible to others, or can be easily concealed,
for example epilepsy, HIV or depression. Goffman also argued
that a person’s condition can become their ‘master-status’; that
is, whatever else he or she might be or accomplish, the con-
dition is the first thing that other people see. For example,
interviews with disabled women have revealed that general
practitioners often (wrongly) attribute health problems to
the individual’s impairment (Begum, 1996).
It is also worth considering here the concept of ‘courtesy
stigma’, which has been defined as a ‘tendency for stigma to
spread from the stigmatised individual to his close connec-
tions...’ (Goffman, 1963, p.30). There is evidence, for exam-
ple, that the family and carers of those with Alzheimer’s dis-
ease often experience considerable embarrassment and
shame (MacRae, 1999). Hence, it is not just disabled people
themselves who experience inequality - evidence suggests
that it can affect the life chances of an entire family (Barnes
et al, 1999). Figure 3 has thinking points on disability and
Accessible information
What then are the implications of disability politics for
speech and language therapists? It is clear that the organisa-
tion of contemporary society plays an important role in cre-
ating and sustaining barriers which prevent disabled people
from participating fully within the social and economic life
of their communities. The Disability Discrimination Act
(1995) goes some way towards the eradication of disabling
environments, but it has been criticised for drawing more on
an individualistic, rather than a social, model of disability
(Fawcett, 2000). Speech and language therapists are often
involved in working with clients and their families to ame-
liorate the consequences of this; examples of good practice
might include the provision of accessible information for dis-
abled clients, parents and relevant others, and the involve-
ment of disabled people as advisors at all stages of policy
development and review within clinical practice
Some disability theorists, however, have argued that the
therapies themselves contribute to the process of disable-
ment. For example:
Rehabilitation can be seen as a major instrument of bodily
rationalisation. Disguised as ‘scientific’ and operating under
the banner of biomedicine, rehabilitation is a powerful
agent in the ratification of particular types of
• Do l recognìse that the
word ‘norma¦’ can
mean dìííerent thìngs
to dìííerent peop¦e at
dìííerent tìmes'
•Do l structure therapy
to íacì¦ìtate ìnc¦usìon
ìn the maìnstream oí
socìa¦ actìvìtìes'
•Do l ìnvo¦ve c¦ìents as
advìsors when
departmenta¦ po¦ìcy'

Figure 4 Implications for speech and
language therapists
• how can therapists avoid
contributing to the
process of disablement?
• do you make moral
judgements about your
clients based on their
• is it always appropriate to
treat disability?
• how far can therapists
contribute to the removal
of disabling barriers
within society?
Figure 3 Disability and inequality:
thinking points
• in what ways might the
inequalities experienced
by disabled people
influence the relationship
between client and
• how might stigma affect
your clients?
• how relevant is courtesy
stigma to the role of the
íurther readìng
Bennetts, L.K. & Flynn, M.C. (2002) Improving the classroom
listening skills of children with Down syndrome by using sound-
field amplification. Downs Syndr Res Pract 8 (1) 19-24.
Many children with Down syndrome have fluctuating conductive hearing
losses further reducing their speech, language and academic develop-
ment. It is within the school environment where access to auditory
information is crucial that many children with Down syndrome are espe-
cially disadvantaged. Conductive hearing impairment which is often
fluctuating and undetected reduces the child’s ability to extract the
important information from the auditory signal. Unfortunately, the
design and acoustics of the classroom leads to problems in extracting
the speech signal through reduced speech intensity due to the increased
distance of the student from the teacher in addition to masking from
excessive background noise. One potential solution is the use of sound-field
amplification which provides a uniform amplification to the teacher’s voice
through the use of a microphone and loudspeakers. This investigation
examined the efficacy of sound-field amplification for 4 children with Down
syndrome. Measures of speech perception were taken with and without the
sound-field system and found that the children perceived significantly more
speech in all conditions where the sound-field system was used (p < .0001).
Importantly, listening performance with the sound-field system was not
affected by reducing the signal-to-noise ratio through increasing the level
of background noise. In summary, sound-field amplification provides
improved access to the speech signal for children with Down syndrome and
as a consequence leads to improved classroom success.
Duff, M.C., Proctor, A. & Haley, K. (2002) Mild traumatic brain
injury (MTBI): assessment and treatment procedures used by
speech-language pathologists (SLPs). Brain Inj 16 (9) 773-87.
The purposes of this study were to identify how individuals with MTBI are
assessed, to determine the referral process to and from speech-language
pathologists (SLPs), to describe the frequency, structure, and nature of
treatment, to identify how individuals with MTBI and their families are
educated about the injury and counselled, and to assess current follow-
up procedures. One-hundred and forty-three hospital and rehabilitation
centre based SLPs from North Carolina and Illinois responded to a survey
developed to address these areas of interest. Findings indicated current diag-
nostic tools used by SLPs lack the sensitivity to detect the subtle cognitive
communication deficits associated with MTBI, referral and follow-up proce-
dures are not sufficiently implemented in facilities to meet the growing needs
of individuals with MTBI, and SLPs would benefit from increased training
regarding the management of individuals with MTBI including educating and
counselling patients and their families.
Thìs regu¦ar íeature
aìms to provìde
ìníormatìon about
artìc¦es ìn other
journa¦s whìch
may be oí ìnterest
to readers.
The Edìtor has
se¦ected these
summarìes írom a
Speech 8 language
Database compì¦ed
by Bìomedìca¦
Research lndexìng.
Every artìc¦e ìn
over thìrty journa¦s
ìs abstracted íor
thìs database,
supp¦emented by a
month¦y scan oí
Medline to pìck
out re¦evant
artìc¦es írom others.
To subscrìbe to the
Index to Recent
Literature on
Speech & Language
·hrìstopher Norrìs,
Downe, Ba¦dersby,
Thìrsk, North
Yorkshìre YO; (PP,
te¦. o+;óç ó(o±8¡,
íax o+;óç ó(oççó.
Annua¦ rates are
·Ds (íor vìndows
lnstìtutìon L,o
lndìvìdua¦ L;o
Prìnted versìon:
lnstìtutìon L;±
lndìvìdua¦ Lço.
·heques are
payab¦e to







Rubin, J.S., Benjamin, E., Prior, A., Lavy, J. & Ratcliffe, P. (2002) The
prevalence of Helicobacter pylori infection in benign laryngeal
disorders. J Voice 16 (1) 87-91.
Helicobacter pylori (HP) is an accepted cause of chronic active gastritis and
has a major causative role in peptic ulcers. It is a gastric carcinogen. Its role
in nonulcer dyspepsia (NUD) is less clear, yet 50% of patients with NUD are
infected with HP, and some recent literature demonstrates long-term
improvement of symptoms following eradication. HP has been investigated
in several other organ systems, but has not been investigated to any major
degree in laryngeal disorders, a region that could be directly exposed to the
bacterium from pharyngolaryngeal reflux. This study represents one arm of
a larger study designed to investigate such a relationship. Of 101 patients
with nonmalignant voice disorders presenting to our voice clinics, 54.5%
tested positive for the H. pylori organism. Of the controls, 47.1% tested pos-
itive. When striated into age groups of < 45 years, 46-61 years, and > 62
years, and then age-matched with the controls, the likelihood of infection
with the H. pylori organism was greater in both the experimental middle
group, and in the middle group when combined with the elder group, than
in the matched controls, and this difference demonstrated a trend
approaching statistical significance. This finding is discussed in the light of
other studies on HP and on gastroesophageal reflex (GER).
Tyler, A.A., Lewis, K.E., Haskill, A. & Tolbert, L.C.
(2002) Efficacy and cross-domain effects of a mor-
phosyntax and a phonology intervention. Lang
Speech Hear Serv Schools 33 (1) 52-66.
Purpose: The purpose of this study was threefold: (a) to
determine the efficacy of a morphosyntax and phonology
intervention against a no-treatment control group, (b) to
assess the effects of those interventions on the non-tar-
geted domain and (c) to evaluate sequence effects when
children receive both interventions. Method: Twenty
preschoolers with impairments in both morphosyntax and
phonology were assigned randomly to an intervention of
two 12-week blocks beginning with either a block of
phonology first (n = 10) or a block of morphosyntax first
(n = 10). Data were collected at pretreatment, after the
first intervention block, and post-treatment. For a control
group of 7 children, data were collected at the begin-
ning and end of a time period equivalent to one inter-
vention block. Changes in a finite morpheme composite
and target/generalization phoneme composite were
assessed. Results: In comparison to the control group
both interventions were effective at a statistically sig-
nificant level in facilitating improvement in the target
domain after 12 weeks. The morphosyntax intervention
led to cross-domain change in phonology that was sim-
ilar to that achieved by the phonology intervention. The
morphosyntax first sequence also led to slightly better
overall morphosyntactic performance. Clinical
Implications: Clinically, results suggest targeting mor-
phosyntax first, followed by phonology, if using a block
intervention sequence for children with concomitant
morphosyntactic and phonological impairments.
Craig, A., Moses, P., Tran, Y., McIsaac, P. & Kirkup, L.
(2002) The effectiveness of a hands-free environmental
control system for the profoundly disabled. Arch
Phys Med Rehabil 83 (10) 1455-8.
The effectiveness of a hands-free environmental control
system (ECS) that allows profoundly disabled persons to
activate and control electric devices in their home by
using consciously controlled changes in their brain signals
was evaluated by means of a cohort study with field trial
testing of the ECS in participant’s homes. Ten profoundly
disabled persons (mean age, 42.9 y), all of whom had
very limited movement from the neck downward. Six
had spinal cord injury with lesions ranging from C2 to
C5-6. The other 4 had profound disability (1 each from
polio, spinal muscular atrophy, multiple sclerosis, cere-
bral palsy). The participants performed tasks on each of
3 test occasions. The tasks consisted of turning a televi-
sion on at the beginning of the trial, changing channels
(up, down), changing volume, and turning it off at the
conclusion of each trial. The time taken to select the
correct option and number of errors in selecting the cor-
rect option were measured. Measures were taken for
each trial, so that any improvement in switching could be
detected. All the participants were able to use the ECS
effectively to operate their television sets. Selecting a cor-
rect option took about 30 seconds (with most of this time
attributed to machine cycling time), with an error rate of
1.8 per 5 options selected. The time taken to operate the
ECS reduced slightly over the 3 trials and selection errors
reduced to less than one error per 5 options (<50%). The
results demonstrate that profoundly disabled persons are
able to use an ECS that uses changes in brain wave signals
with minimal training.
1. Improve the quality and specificity of information
2. Agree outcomes that will have long-term impact
3. Respond to a client’s changing needs
4. Work out who all your users are, not just the end user
5. Collaborate - and be seen to collaborate
6. Connect with other service providers
7. Help users to inspire and motivate others
8. Use consumer group frameworks to assess your therapy provision
9. Involve users at a policy (not necessarily executive) level
10. Draw on user involvement initiatives beyond speech and language therapy
Practical points: putting users in the driving seat
l put users ìn the
drìvìng seat
Sooner or ¦ater, most ¦earner drìvers
reach a poìnt where they are ready to
go oíí on theìr own, an exhì¦aratìng ìí s¦ìght¦y
scary moment. vhen you thìnk about ìt,
speech and ¦anguage therapìsts have a ¦ot
ìn common wìth drìvìng ìnstructors -
patìence, good communìcatìon sk즦s,
vìsìon, knowìng when to app¦y the brakes
- but do we íu¦¦y understand what ìt
means to put our users ìn the drìvìng seat'
Here, three contrìbutors who work íor
consumer groups* suggest why we shou¦d
acce¦erate the process.
* “ they íunctìon ¦arge¦y outsìde oí the hea¦thcare system,
consumer groups are ìn a posìtìon to see the bìgger pìcture and
to pìck up on trends ¦ong beíore those workìng ìnsìde the system
can perceìve them. Thìs ìs ¦arge¦y a resu¦t oí consumer groups’
eííorts to construct a new kìnd oí scìence - one whìch uses a
combìnatìon oí observatìon, anecdote, dìa¦ogue, comp¦aìnts and
human ìnput as we¦¦ as the avaì¦ab¦e scìentìíìc, socìo¦ogìca¦ and
psycho¦ogìca¦ evìdence - to reach ìts conc¦usìons regardìng
approprìate care, and to ìdentìíy prob¦ems and opportunìtìes
íor change.” (Thomas, P. (±oo±) The mìdwìíe you have
ca¦¦ed knows you are waìtìng... AlNS Journa¦ +( (¡), pó.)
Ann Auchterlonie is Director of
Afasic Scotland. She writes in a
personal capacity informed by
her experience with Afasic in
Scotland. The views stated here
are not necessarily those of
Afasic and do not reflect the UK
Please note that Afasic Scotland
has moved to:
Unit 1 Prospect III, Gemini Crescent,
Dundee Technology Park, Dundee DD2
1TY tel: 01382 561891 Fax: 01382
568391 email:
Carole E. Higginbottom was
until recently speech and
language therapy service
manager at The Robert Ogden
School in South Yorkshire. She is
now a freelance consultant,
currently working for Barnsley
Local Education Authority at a
strategic level supporting their
resource provision for children
with autism
Cecilia Yardley is Director of
Services with Speakability,
ìí you want
•to íocus on so¦utìons not
•c¦ìents to take more
•your ìmpact to contìnue
when therapy stops
Read thìs
cover story
go unfilled? Have you considered what the impact of a six month break
in therapy is for a child? Parents regularly ask who is responsible for the
provision of speech and language therapy because they want to find
out who is responsible for not filling the posts and sustaining the service
identified as critical to meeting their child’s special educational needs
and, sometimes, they do not get straight answers. The authority is
responsible for provision but the filling of the post is the responsibility
of the health trust and, while the letters and telephone calls are
exchanged, children’s needs go unmet.
Occasionally, the issues are of effective provision at a local level - the qual-
ity of the individual service provided or the management of staff working
in relatively isolated situations, or in schools. Resolving the problemcan be
difficult when raising it may be seen as a criticism of other managers,
where inter-professional relationships are not good, or alternative sources
of supply are simply not available.
The local authority is currently a user with the responsibilities of a
provider without the powers. So, in the interests of accountability and
services for children in need, should I put the local authority in the
driving seat and clarify both responsibility and accountability? And
would that be enough?
What about parents as co-drivers? In Scotland, parents have statutory
responsibilities in the interests of the child, for their education, health,
development and welfare and to act as the child’s legal representative;
and the right to take action to secure appropriate services for them.
They are users.
Afasic actively promotes partnership between parents and profes-
sionals, parents and local authorities and parents and health services.
But is partnership enough?
At present parents value speech and language therapy but have little
understanding of what it entails and who is responsible for providing it.
Their ability to act in their child’s interests is restricted. Increased partic-
ipation by parents in the planning and monitoring of service provision
is an essential first step. A parallel step is to involve parents in the ongo-
ing work with their child, helping them understand the nature of their
child’s difficulty, what support they can give and how the therapy pro-
vided can impact on their child’s learning. The Individual Education Plan
can provide a framework for this where the therapist and the teacher
are working collaboratively and involving the parent, and the proposed
Co-ordinated Support Plan will make it essential (note 1).
If it is the parents’ duty to act in the interests of their child’s health,
development and welfare, how can they fulfil that duty if they are not
in a driving seat?
Right to participation
And what about children and young people themselves - are they just
passengers? Since the UN Convention on the Rights of the Child spelt
out children’s right to participation - and not to be passive recipients of
services provided for them, good or bad - recognition of the importance
of involving children when decisions are made about them has been
gradually developing.
Children “of sufficient understanding” have the right to consent to, or
refuse, medical examination or treatment. Their rights to be involved in
decisions about their education or their personal life are now enshrined
in legislation and embodied in many national policy documents.
cover story
fasic promotes the interests of
children and young people with
speech and language impair-
ments, works for their inclusion in
society and supports their parents and car-
ers. A common question parents ask us is, “Where can I get private
speech and language therapy?” It usually follows a complaint that their
child isn’t getting enough speech and language therapy, or that their
speech and language therapist has gone off on maternity leave and
hasn’t been replaced or, occasionally, that they have no choice in the
therapist provided. Like Oliver Twist, parents want more - usually more
of a good thing. More therapists, more therapy, more one-to-one
therapy, more therapists in secondary schools (are there ANY?) They
also want better. Better understanding of speech and language impair-
ments by GPs and in schools, better evidence of teachers, therapists and
educational psychologists working together, better information about
the nature of their child’s difficulty and what the implications are,
better information on the level of service their child is going to receive
and what the intervention is aiming to achieve, and better service
Parents want more of what they see as a good thing. But, before we
decide to change drivers, we need to consider how that would make a
good thing better. We also need to establish just who’s driving the bus
Much of Afasic’s work is done on behalf of children and young people
for whom speech and language impairments have significant implica-
tions for their learning and potential educational achievement. In
Scotland, many children have these needs recognised in a Record of
Needs, opened by the Education Authority to support the planning of
appropriate educational provision (note 1). In these cases, the local
authority is responsible for the provision of speech and language
therapy and funding is provided to enable the authority to secure
therapy services. The authority can choose to buy these services from
their local health trust, or a different one, to buy them from a private
provider or to employ therapists. In practice, local authorities enter into
contracts with their local heath trusts - with varying degrees of success,
if we measure the outcomes against standards such as:
• Child-centred provision of services
• Collaborative working practice between therapists and teachers
• Collaborative training of teachers and therapists
• Improved understanding of specific language impairment in schools
• Effective service provision
• Accountability to parents, children and young people.
Not long ago, a major debate centred round the “The Case of the
Disappearing £millions”, announced by a Government Minister in
Scotland as additional funding for speech and language therapy in
schools. The “unhypothecated” funds were allocated to local authorities
across Scotland with little impact on services. And, while central gov-
ernment and local authorities passed responsibility to the other and
avoided direct accountability, raised expectations were dashed and chil-
dren’s needs went unmet. Meanwhile, the allocation of health service
resources to the provision of speech and language therapy for children
whose needs are not recorded went unexamined and the level of
resources actually allocated to speech and language therapy for chil-
dren in school remains difficult to establish across Scotland.
A different problem arises on a regular basis and is a common cause
for complaint: maternity leave. Have you noticed how many speech and
language therapists are female? Have you calculated how many have
maternity leave? Have you noticed how many maternity leave vacancies
A¦¦ aboard!
lrom her posìtìon at the whee¦ oí Aíasìc Scot¦and,
Ann Auchter¦onìe takes a persona¦ vìew oí some oí
the obstac¦es we need to negotìate to brìng parents
and young peop¦e wìth speech and ¦anguage
ìmpaìrments on board our bus.

Simply getting older doesn’t achieve this. Active participation means
being informed, as far as possible, of the purpose of the therapy, encour-
aged to give their views and to be listened to, helped to understand
what can be achieved through therapy and their own role in making this
happen, and consulted on agreeing and setting targets for outcomes
which will have an impact on them long after therapy has ceased.
First we have to enable children and young people to become users.
But then, can we put these users in the driving seat or even in the back
seat - helping and directing the professional chauffeur to get them to
where they need and want to be?
1. The Scottish Executive is currently planning changes to the legal
framework for the provision of services for children with special educa-
tional needs, which would abolish the Record of Needs and replace it
with a Co-ordinated Support Plan.
2. “Exploring Participation”, Afasic Scotland (2002) is available from
Afasic Scotland, tel: 01382 561891, price is £4 plus £1 p&p.
Recently, Afasic Scotland undertook an analysis of the extent to which
children and young people participated in the formal decision making
process involving teachers, speech and language therapists, educational
psychologists and parents in school (note 2). As the project progressed,
we became aware of a vacuum at the heart of the documentation:
amongst the reminders of children’s rights and the need to give due
weight and pay due regard to their views, rarely does there appear any
clear statement about why their participation is so important, or what
end the effort to involve children in the decision making process is
intended to serve.
Obviously, very early intervention takes place because professionals
and parents have recognised the need for therapy and work towards
helping the child, but successful therapy always depends on the child’s
participation and the child’s willingness to participate plays an increas-
ingly important role in achieving successful outcomes as the child gets
To be a user of speech and language therapy, children and young peo-
ple need to move from being passive recipients to active participants.
cover story
ach young person with autism
is as unique as a fingerprint
and all are challenged by their
autism in a different way. I
work as a speech and language therapy service manager in The Robert
Ogden School situated in South Yorkshire. The school is run by The
National Autistic Society and provides education and care for 138 young
people between the ages of 7 and 19 years. We are fortunate enough to
have three full-time specialist speech and language therapists support-
ing both the educational and residential provision and working along-
side these dedicated teams to provide individualised yet flexible pro-
grammes to minimise the impact of autism on the young people’s lives
and those of their families.
When I was first asked to write this article, I immediately thought of my
time in the NHS and panicked! Why wasn’t I, as the manager of a service
for children and adolescents with autism, dishing out questionnaires
and audit forms to my service users? I couldn’t possibly be putting users
in the driving seat if I didn’t have reams of paper and graphs to prove
how effective and professional we are. Then I thought again. Who actually
are the service users? Where do we make the biggest impact? How do
we respond to the changing needs of the individuals that we work with
on a daily basis? How do we know what they need? More importantly,
how do they tell us what they need?
It is difficult to say, really, who our service users are: the young people with
autism; their parents or carers; the teachers; residential social workers;
special support assistants; respite service staff; the taxi drivers? Each one
can have a significant impact, for better or worse, on the lives of indi-
viduals with autism. Their influence should not be underestimated or
undervalued. The person with autism is, of course, the end user of the
service but the parents, carers and professionals accompany the child
with autism on his or her life journey and therefore can and should access
the support and expertise of the speech and language therapy service.
Where do we make the biggest impact? The role of the speech and
language therapist at The Robert Ogden School is to work as part of a
multidisciplinary team in its broadest sense, sometimes leading sometimes
following, but always keeping the needs of our special young people
uppermost in both mind and practice. The National Autistic Society has
developed a framework, SPELL, for understanding and responding to
the needs of children and adults with an autistic spectrum disorder across
its range of services. This stands for Structure, Positive (approaches and
interventions), Empathy, Low arousal (approaches and environment) and
Links (between the various components in a person’s life). As spells go,
this one, if applied sensitively with knowledge and to individuals, can sig-
nificantly improve the communication and flexibility of our client group.
1) Structure
Structure can and does change lives. I don’t want to seem to be teach-
ing my granny to suck eggs, but this may just simply be changing the
physical structure of a room to using objects of reference and providing
access to symbols, words or pictures to enable a child to understand and
express himself.
Making a child’s life predictable and ordered will gradually improve
understanding, communication and behaviour. Modelling practice and
supporting a teacher or parent to set these systems up can be liberating
for both child and adult.
2) Positive (approaches and interventions)
Sometimes I think many of our children would scream, if they could,
“Just tell me what to do!” We all need to know the rules of the game
not what we are doing wrong. The biggest impact can be made by the
simplest of actions.
3) Empathy
Imagine your worst holiday nightmare; stuck in the middle of deepest
darkest Borneo; lost; don’t speak the language; don’t know the cultural
taboos (like the advert with the guy with his bare feet on the table) no
food, no drink; no money; horror of horrors no phone! Aagh! Blood
pressure sky high, heart pounding, adrenalin pumping; that’s what I
think autism must be like every day.
Passìng the test
The Natìona¦ Autìstìc Socìety encourages ìts
therapìsts to íocus on the changìng needs oí
theìr young c¦ìents, íree írom the constraìnts oí
the NHS. ·aro¦e Hìggìnbottom assesses a Ro¦¦s
Royce servìce.

It is important to distinguish, however, between the policy-making role
of trustees and the executive role of staff and volunteers. When we talk
at Speakability about people with aphasia ‘being in the driving seat’, we
mean leading the policy work of the charity. The unpalatable reality -
which both Speakability staff and our client group wrestle with - is that
people with aphasia may no longer be able, unsupported, to undertake
‘executive roles’ because of their difficulties with reading, writing,
speaking and memory.
Experience of working over a six-month period with someone with
aphasia who made presentations to groups about aphasia and
Speakability, highlighted that the commitment of support from the
organisation may need to be very intensive to make that sort of role
work. In a medium-sized organisation, where staff are already fairly
stretched, that is not a commitment to take on lightly.
Inspired and motivated
However, people with aphasia who lack confidence in their own ability
to communicate can be very inspired and motivated by hearing one of
observe, facilitate and communicate with the child and others to come
to a consensus about the best ways to enable a child with autism to tell
us what they need. We may not get it right first time but if we can per-
suade these very special children that visiting our world, even for an
instant, is fun then I for one feel I’ve made a difference.
As a service, do we put users in the driving seat? Do the wishes of our
client group change the shape of our service? Do we listen? Yes, I think
so. Maybe, as a service manager working for the National Autistic
Society, I am in a very unique position. I am not pressurised by waiting
lists, targets for face-to-face contacts and the rest. I have the greatest
respect for my colleagues in the NHS who respond professionally and
sensitively to these pressures. I am allowed, perhaps even encouraged,
by my masters to focus on the changing needs of my client group without
recourse to number crunching. Maybe that’s why I left the NHS...
The National Autistic Society (NAS) is the UK’s leading charity for people
with autistic spectrum disorders and their families. In its 41st year, it con-
tinues to spearhead national and international initiatives and provide a
strong voice for autism. The Society provides a wide range of services to
help people with autism and Asperger syndrome live their lives with as
much independence as possible. The NAS has over 12,000 members whose
vote at the General Meeting ultimately controls the Society’s direction.
The issues raised by NAS members and other interested individuals have a
major impact on our policy and campaigning work. The NAS Policy &
Campaigns team produces a report once a year on a topic relevant to
autism (for example, diagnosis, inclusion), for which the views and experi-
ences of our members and other interested individuals are surveyed. The
NAS Regional Development teams inform the policy and senior manage-
ment teams of the issues raised by members locally - whether through NAS
branches, schools or social groups. The policy team raises these in meetings
with government officials (such as those at the Department for Education
& Skills, the Department of Health and other agencies) and groups with
which the organisation works.
cover story

ow many people can you fit
in a Mini? A mind-numbing
nineteen!* Of course, laden
with so many individuals,
driving is virtually impossible. And the same is true of organisations with
many stakeholders, unless it is absolutely clear who is in charge of driving.
At Speakability, we’re quite clear that people with aphasia should be in
the driving seat. This is a conscious change of direction for the organisation.
For most of its twenty-four years, under its former name of Action for
Dysphasic Adults, the charity essentially supported people with aphasia
indirectly. It provided materials and information about aphasia to
speech and language therapists, and looked to therapists to take the
lead on setting up and maintaining the network of support groups.
Since the charity’s relaunch in 2000, the Trustees and staff have been
actively engaged in trying to expand the opportunities for people with
aphasia to voice their needs and interests. The process starts at the top
of the organisation. A third of Speakability’s trustees have aphasia. They
are uniquely placed, in discussions about strategy, to draw on their
experience of living with the condition. And we are about to open up a
further seat on the Board for a person with aphasia, who will be selected
from candidates drawn from the Speakability Action Group, a body that
comprises members of each support group in the country.
vhere do you want to go'
Peop¦e wìth aphasìa are
handed the keys by Speakabì¦ìty
- a¦ong wìth traìnìng, maps
and navìgatìona¦ support.
·ecì¦ìa Yard¦ey reports.
4) Low arousal
This is the most challenging aspect for all who work with autism - look-
ing and feeling the world with the eyes of autism. What you or I feel is
calming may be wildly stimulating if you have autism.
5) Links
We all know how valuable it is to network at meetings and conferences.
It’s vital that service providers connect. For the speech and language
therapist working in my environment this can mean many things.
Attending each Annual Review can influence the other services provided
for a family with autism by supporting the young person, parents and
carers to communicate their needs to organisations like social services,
Connexions ( and Local Education Authorities.
Aiding in the setting of communication based yearly objectives can result
in achievement. Working with dedicated residential staff to implement the
requirements of the National Care Standards (
in order to aid the young people to communicate about choices, likes
and dislikes can result in major changes in a child’s daily activities.
Working with highly professional education teams to enable access to
the curriculum and to develop strategies can extend young people’s
skills beyond what was initially predicted. Each of these elements con-
tributes to an understanding of the changing needs of the young people
who attend the Robert Ogden School.
Privileged role
The vitally important factor has to be, for the speech and language therapist
at least, how do our service users tell us what they need? Parents, carers
and teachers are usually very clear about their needs and the perceived
needs of the young person. Working with youngsters with autism, it is
often blindingly obvious what they want but not often what they need.
Like all of us, what we want may not be what’s good for us; choosing
between chocolate and fruit - no contest - even with informed choice. It
is the privileged role of the speech and language therapist to assess,
cover story
their peers both describing and demonstrating successful communication.
For this reason, fully aware of the support issues, we are in the process
of setting up a post, on a limited-hours basis, to engage someone with
aphasia to take the lead on promoting our ‘Speakers Panel’. Speakers
recruited to the Panel will receive training in how to make presentations
to community groups and statutory bodies. Some of the training will
deal with effective communication strategies, but it will also cover the
kind of ‘user involvement’ issues addressed by projects like
CancerVOICES ( and the Expert Patient
( initiatives. To take the pres-
sure off aphasic spokespeople, Speakability is shooting a ten minute
video that introduces the work of the organisation.
So, Speakability puts people with aphasia in the driving seat through
involvement as trustees and spokespeople, and also Working Party and
support group membership. Speakability’s Working Parties are typically
six or eight strong. They meet several times to help develop a particular
product or plan an event. The ‘Patient’s Passport’ Working Party, for
example, has provided initial ideas and feedback on prototypes of a per-
sonalised healthcare communication book that is now available for
external consultation with a wide range of organisations outside the
field of aphasia. Speakability recognises the value of specialist knowl-
edge within the Working Party. For example, the Patient’s Passport
group included a GP who now has aphasia.
Speakability staff have an agreement with working party members
that they will be faithful to the ideas suggested, but will ‘repackage’
them, where necessary, to make the language accessible and appropri-
ate to the audience. This is vital when the charity is working with policy
makers. On one occasion, Action for Dysphasic Adults was involved in a
government consultation and delivered a response written in aphasic
language that was submitted late because of the difficulty in meeting
the consultation timeframe. In this instance, the response missed the
Acting as a bridge between people with aphasia and policy makers,
Speakability must find ways of responding within a very short timeframe
that it often cannot control. So, to reach the destination set by people
with aphasia, it may sometimes appear that Speakability staff are driving.
Perhaps the analogy of competitive blind skiers is appropriate - the blind skier
is taking the lead but the assistant is enabling him to negotiate the course.
Return autonomy
There are other ways in which we try to return autonomy to people with
aphasia. Most of Speakability’s support groups are run by people with
aphasia, often with the support of non-aphasic volunteers, usually the
partner of an aphasic member. In the words of one person with aphasia,
“The group meets for confidence building, conversation and company.”
Speakability’s ethos is very much that carers must not take over and
monopolise the safe place to speak that the groups provide. However, of
course, carers of people with aphasia need their own space to adjust to
the massive impact that aphasia can place on the relationship. In the
past, the charity’s focus at group level was very much on the person with
aphasia, somewhat to the exclusion of carers. Now, recognising that a
well-supported carer can offer the best support to the person with aphasia,
we are broadening our approach and laying on workshop sessions to
explore the most pressing issues for carers.
As well as local group meetings, people with aphasia meet together at
Speakability network meetings. These often have a ‘social’ core - an
entertainment or party - but they are an opportunity to share successes
across the region. For example, members of groups that have raised
money to pay for computers and information technology training for
group members share with others how they did it. The feeling of
achievement, in both having undertaken the activity and then having
communicated with others about it, is palpable. Involvement as a
spokesperson or group officer gives people with aphasia an opportunity
to regain some of the status and social contact they may have lost when
aphasia robbed them of work or leisure activities.
In addition to our work directly with people with aphasia, Speakability
undertakes to make the environment more ‘aphasia-friendly’. Calls to
the information service are typically about how to access services and
support for people with aphasia and what family members can do them-
selves to help rebuild communication.
We run training courses for health and social care professionals and
unpaid carers to help them improve their own communication abilities,
and create a better climate for communication for the aphasic person.
Recent publications, including the guidelines booklet Rebuilding
Communication and the Patient’s Passport, address the same need.
Our campaigning activities and materials that focus on the rights of
people with aphasia, such as the Charter for People with Aphasia and
“Joined Up Talking, Joined Up Working”, are intended to stimulate
change at policy and service planning levels. Our annual lecture series,
the Mary Law Lecture, aims to generate creative discussion and practice
within the speech and language therapy community. Speakability is also
a stakeholder in the Royal College of Speech & Language Therapists’
Aphasia Guidelines development project.
The title of our forthcoming Annual Meeting - “Putting people with
aphasia at the heart of their services” - could easily be rephrased as
“Putting people with aphasia in the driving seat”. They are the experts
in where they want to go. Our role as navigator is to make it as smooth
and exciting a ride as possible.
*Record set in new-style Mini 19/12/01. Record for old-style Mini, set
3/7/00 is 18 women.
Chief speech and language therapist Lizzy Marks attended
Speakability’s Rebuilding Communication reception in March
on behalf of Speech & Language Therapy in Practice. Hosted
by Tim Boswell, Shadow Minister for Education & Skills and
for Disabilities, well over 100 people came to Westminster for
the launch of the Rebuilding Communication guidelines, the
Patient’s Passport Consultation and work on a more aphasia-
friendly website.
In a personal message, the Prime Minister Tony Blair said of
Speakability, “I am delighted to see that the charity is
successfully bringing together individuals and organisations
that can work together to dismantle the barriers that face
people with aphasia and other communication impairments.”
John Hughes, who heads the Disability and Carers Directorate
Benefit Policy Division, reported that the government is
committed to providing an accessible customer service in
benefits offices. In a rolling training programme, the first
module is about dealing with people with communication
impairments, and 8000 staff will be using Speakability’s
Rebuilding Communication guidelines in their training.
Speakability’s chief executive Anne Keatley-Clarke pointed
out that the views of people with aphasia were excluded
from a national user survey as the interviewers didn’t know
how to communicate with them. She hopes the Patient’s
Passport will allow an alternative means of communication
with benefits including better informed consent, counselling
and advice. Lizzy Marks believes that, “the communication
passport will be invaluable for ensuring that clients attending
medical or social appointments can have their needs met by
professionals.” Any therapists wishing to take part in the
consultation on the Patient’s Passport (for anyone with a
communication difficulty, not just aphasia) can request a
sample passport to trial with clients and then offer feedback
by the end of August. E-mail, or
fax 0207 928 9542 with your details. A follow-up workshop
will take place in central London in September to review the
consultation and consider the next steps.
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19 June 2003
National Autistic Society
Autistic Spectrum Disorders and Sexuality
£99 professionals, £60 parents
NAS Conference and Events Department, 0115 911
3367, e-mail
Association of Speech & Language Therapists in
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20 June, 2003, Reading & 18 August, 2003, Coventry
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12-14 September 2003
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Silver Jubilee Conference
Trinity & All Saints College Leeds
Provisional programme includes: avoiding avoidance,
the Paxman interviews, cognitive behavioural therapy
and positive self talk for teens.
7-10 October 2003
Johansen Sound Therapy
With Dr Kjeld Johansen PhD
South Queensferry, by Edinburgh £350
A form of auditory integration training to enhance
auditory processing skills in children with a variety of
difficulties, and make teaching and therapy more
Details: Camilla Leslie, tel/fax 0131 337 5427, e-mail
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These ìdeas are írom
peop¦e ¦ìvìng wìth
aphasìa who have
attended ·onnect
íor a day events ìn
Brìsto¦ and ·ornwa¦¦.
These roadshow
networkìng and
ìníormatìon events
were set up ìn
response to a
consu¦tatìon wìth
over +oo peop¦e
¦ìvìng wìth aphasìa
ìn the South vest
oí Eng¦and. There
were about ¡o
peop¦e wìth aphasìa
at each oí the
events as we¦¦ as
re¦atìves and írìends.
Here are some oí
theìr top tìps íor
vìth thanks to a¦¦
the peop¦e wìth
aphasìa who came
to the events and
shared theìr
storìes and ìdeas.
Nore about
·onnect íor a day
events at
or phone
·aro¦e ·ross on
o±o; ¡ó; o8(ó.
5. Make a life book
Conversations are so much easier when people know who
you really are and what you are interested in. Making a
life book can be a great way of working on communication
skills like writing and talking. It can help you to talk
about yourself and your past - to make relationships with
new people and talk about past experiences with old
friends. Even close friends and family can find it hard to
have and develop conversations, so a book about your life
and important events, people and achievements can be a
starting point for conversations and sharing stories.
Lots of people talked about having but not using com-
munication books they had worked on with the speech
and language therapist. Some people with aphasia and
their relatives described them as ‘boring’, ‘childish’ and
not very helpful in talking about real, everyday topics
and issues. So it’s important to choose carefully what
you want to put in and what you really like to talk
about with different people.
Beyond Aphasia has a chapter on developing and using
communication books and a chapter on identity and
developing personal portfolios - see Pound, C., Parr, S.,
Lindsay, J. & Woolf, C. (2000) Bicester: Speechmark ISBN
086388 347 9.
1. Put on the brakes
Typically people talk too fast and too much. Everyone
always seems in a rush. This is particularly the case on
hospital wards and in nursing home settings but also
with friends and family. People who remember to slow
down and give you time to think, time to join in and
time to reply are a very, very valuable resource.
Although this seems quite straightforward, many people
find slowing down exceptionally difficult. Tell them how
much slowing down helps and what a difference it
makes - and remind them when they forget.
2. Demand respect
The ‘does he take sugar?’ syndrome is still alive and
kicking. Being treated as if you were stupid or just plain
ignored is still an everyday experience for people living
with aphasia. You have opinions, interests, ideas and
the ability to be involved. You don’t have to put up
with people who shout, who finish your sentences, or
who pretend to understand you.
Treating you as a person and remembering to listen to
you is all it takes to make a huge difference. Silence
really can be golden!
3. Spread the word
Aphasia is hidden and aphasia is complex. People don’t
know what it is and they don’t know how to react, so
you have to teach them.
There are lots of sources of information to help. The Aphasia
Handbook has information in an easy to use style and there is
a new website along similar lines at
The Stroke Association and Speakability also produce useful
information to tell others what aphasia is.
The Aphasia Handbook by Susie Parr, Carole Pound,
Sally Byng and Bridget Long is published by Connect
Press, ISBN 0953604209. Available for £12.75 inc. p+p
from Ecodistribution, tel/fax 01239 891431.
4. Understand about good days and bad days
Nearly everyone with aphasia has good days and bad
days. People talked about how confusing and frustrating
this can be.
People with aphasia have different ways of dealing with
this - not pushing yourself, leaving the tough jobs and
going shopping, telling people you are having a bad
day, asking for a bit more help than usual, going to
bed. Another important tip is recognising and
remembering when the good days are getting more
frequent and the bad days getting less.
10. Be positive
People with aphasia talked about remembering to cele-
brate your successes no matter how big or small, about
relaxing and having a laugh, about doing things with
friends that you both enjoy. Things may be hard but
remember to go for it! Another side of a positive attitude
is to forgive others and don’t hold on to your angry
feelings. Try to forget it and move on - though don’t be
afraid to show your feelings either.
And finally, remember there is always room for
improvement. Change doesn’t just happen in the first
six months, it can go on for many, many years. Time
and again people gave examples of life and conversation
improving years and years after their stroke - like one
woman who has just got married and found love, happiness
and better conversations 10 years after her stroke.
6. Make aphasia visible
Communication disability is very often invisible. If people
can’t see or don’t know you have communication
difficulties they won’t cut you any slack. When other
people do realise there’s something unusual about your
speech, their own embarrassment or fear of getting
stuck may immediately become a further barrier to
good, two-way conversation. So take the initiative and
tell people about your difficulties and what helps you.
Lots of people use credit card size explanations that
they have had a stroke and have aphasia. Some people
rarely get them out but just having them in their wallet
or purse is a way of feeling more secure about explaining
if they do get stuck. Not everyone feels comfortable
about saying they have had a stroke or head injury
because they might then be labelled. But for some, a
Stroke Association or customised card (or set of cards)
about why they have aphasia and what helps them is a
handy way of making the invisible more visible.
7. Be prepared
Dates, times and places are some of the hardest things
to remember and use. Always having a calendar, diary
and maps to hand can help you feel confident that
arrangements have been understood by both parties.
What’s more they are part of every day life for all people,
not something different and unusual or stigmatising.
8. Pick up the phone
Many people with aphasia talked of their difficulties
with and tendency to avoid using the phone. This can
be yet another source of feeling excluded and cut off.
One ingenious solution for people who don’t feel confident
enough to talk but who want to be involved is to listen
in on an extension or speakerphone. Other people
talked about using voice activated messages on mobile
phones as a useful alarm system for emergencies -
speaking a single familiar word into the phone will
automatically dial your emergency person. And for others,
using a fax rather than a phone lets them see the number
to dial and to send and receive messages - they keep in
touch without the fluster associated with voice-only calls.
9. Put pen to paper
When other people write things down it can be so
much easier to follow and remember conversations.
People don’t naturally do this so you have to tell them
to write it and what exactly is helpful to you - for example
just the key words rather than long sentences. Always
having a pen and pad to hand means that writing just
becomes a natural part of the conversation rather than
a big inconvenience.