Education

A question of taste
Ethics
Strength in
compromise
Priorities
Desperately
seeking
consensus!
Service
development
An audit result
Collaboration
A multi-agency team
In my
experience
Clinical
liaison
groups
How I
manage
dementia
My top
resources
The London Connect Centre
A W A Y F O R W A R D
ISSN 1368-2105
AUTUNN oo+
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Reprinted articles to complement the
Autumn 2001 issue of Speech &
Language Therapy in Practice
Video - a reflective tool.
(Autumn 1997)***
Continual self-analysis ensures we all
practise what we preach. Keena
Cummins and Sarah Hulme focus on the
strengths of video playback as a reflective
tool in the therapy process and for
ongoing professional development.
Whose right? - Whos right?
(Winter 1999)***
Jack is a 10 year old boy with cerebral
palsy. His parents and his speech and
language therapist have very different
opinions on how his therapy should be
delivered, as does Jack himself. Can an
ethical perspective help them come to
an agreement? Jois Stansfield and
Christine Hobden find out.
Activating Potential for
Communication.
(Winter 1997)***
Confused, disorientated and socially
deprived elderly people are often
neglected as client groups. Sonas aPc is
a packaged programme designed to
meet their needs. Speech and language
and occupational therapy staff of the
Victoria Infirmary NHS Trust outline its
implementation and benefits.
Also on the site - contents of back
issues and news about the next one,
links to other sites of practical value
and information about writing for the
magazine. Pay us a visit soon and try
out our new search facility.
Remember - you can also
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From Speech Therapy in Practice*/Human
Communication**, courtesy of Hexagon
Publishing, or from Speech & Language Therapy
in Practice***
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READER OllERS
Two great reader oers
rom Back Sheep Press
lrst up, we have two copes o the D
Tme to Sng!
Twenty five childrens songs are newly arranged at a
slower tempo so children with speech and language dif-
ficulties can join in. Im a Little Teapot, If Youre Happy
and You Know It and Wheels on the Bus are just a few
of the popular songs featured. The normal retail price is 12 - but you could get it FREE!
To enter, send your name and address marked Speech & Language Therapy in
Practice - CD offer to Alan Henson, Black Sheep Press, Coast Cottage, Donna Nook,
Louth, Lincs. LN11 7PA by 25th October. The winners will be notified by 31st October.
Next, we have Back Sheep Presss new oncepts n Pctures matera.
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packs relate to time: before/after; parts of the day; days; first/next/last;
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from Black Sheep Press, Tel. 01756 791 627, email alan@blacksheeppress.co.uk. You can also
purchase materials online at www.blacksheep-epress.com.
vn The Seectve Nutsm
Resource Nanua
Why does a child speak to its parents but not to its
teacher; and to its brothers and sisters at home but not
in any other environment?
Selective Mutism is a rare condition but it is important
because selectively mute children are at a significant dis-
advantage personally, socially and educationally. Written
by experienced speech and language therapists Maggie
Johnson and Alison Wintgens, with the emphasis on
practical assessment and treatment, and advice and
information, The Selective Mutism Resource Manual fills
a gap in the availability of suitable resources.
Speechmark Publishing Ltd (formerly Winslow Press) is making copies available FREE to
FIVE readers of Speech & Language Therapy in Practice in yet another great reader offer.
To enter, simply send your name and address marked Speech & Language Therapy
in Practice - SMRM offer to Su Underhill, Speechmark, Telford Road, Bicester, OX26
4LQ. The closing date for receipt of entries is 25th October, and the winners will be
notified by 31st October.
The Selective Mutism Resource Manual is available, along with a free catalogue,
from Speechmark, tel. 01869 244644, priced 37.50.
The next issue of Speech & Language Therapy in Practice features How I use music
in therapy. We kick-start the theme with a great reader offer.
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This program lets students listen to sounds and build their own music from pre-defined
sound clips. A variety of styles provides something for every age group, and simple to
complex combinations cater for all abilities. Music Factory is available in eight lan-
guages and can be accessed using a variety of methods such as a touch screen or switch.
To enter, simply send your name and address marked Speech & Language Therapy in
Practice - MF offer to Ian Wedgewood, Widgit Software Ltd, 26 Queen St, Cubbington,
Leamington Spa, Warwickshire CV32 7NA. The closing date for receipt of entries is 25th
October 2001, and the first three out of the hat will be notified by 31st October.
The recommended running specification is a multimedia PC with CD ROM running
under Windows 95 or higher or Windows NT4 plus. A single user copy is 34 plus VAT
+ p&p from Widgit Software Ltd, tel. 01926 885303.
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Congratulations to the winners of Speechmarks Working with Adults with a
Learning Disability, the reader offer in the Summer 01 issue. They are Alison
Lemmey, Anna Watson, Kevin Borrett, Nicola Sydney and Sarah Harris.
SPEECH & LANGUAGE THERAPY IN PRACTICE AUTUMN 2001 1
14 Priorities
Motivation should be a significant factor for any
system of prioritisation, providing all aspects are
taken into account. For those who have learning
difficulties, motivation to communicate is as important
as motivation to change.
Joanna Manzs pilot prioritisation system for mainstream
school children who have learning difficulties is based
on the opinions of experts in the field.
18Service development
Although patients are encouraged to contact the
speech and language therapy department when a
valve change is indicated, some attend without an
appointment. When patient numbers were smaller
these requests could usually be accommodated but,
with increased numbers, this is not always possible.
Janice Deys decision to audit a tracheo-oesophageal
valve changing service has led directly to the
establishment of a specific Valve Clinic.
20 Collaboration
The team works very closely together and all work is
developed jointly. When referrals or requests for
training or parent support are received the team
decides together on which members will respond. As
well as simplifying the process for the providers of
nursery education, this approach also enables the team
to develop their own skills and learn from each other.
A multi-agency team tackles the needs of children
with behavioural and language difficulties in nursery
settings. Sarah Hulme and Barbara Sampson report.
24How I
manage
My main strategy
is training. The
underlying principle
is that my input will
make little difference
to the patients care
unless I can influence
the behaviour of the
staff and relatives.
Julie Baker and
Mary Heritage
work with elderly
people with dementia, while Scilla Reeds clients also have
learning disabilities.
AUTUMN 2001
(publication date 27th August)
ISSN 1368-2105
Published by:
Avril Nicoll
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e-mail: avrilnicoll@speechmag.com
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Editor:
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Avril Nicoll 2001
Contents of Speech & Language
Therapy in Practice reflect the views
of the individual authors and not
necessarily the views of the publish-
er. Publication of advertisements is
not an endorsement of the adver-
tiser or product or service offered.
Any contributions may also appear
on the magazines internet site.
Inside cover
Spring 01 speechmag
Reader offers
Two great reader offers from Black Sheep Press, plus a
chance to win Winslows The Selective Mutism Resource
Manual and Music Factory software courtesy of Widgit.
2 News / Comment
4 Education
One student who was 21 years old was thought to
have little or no discrimination of tastes and was
known for eating chillies and onion with no reaction;
however, on closer inspection and recording, he was
found to have distinctly different responses to tastes.
For example, he would have an increase in saliva for
lemons and his eyes would water on onions.
Kim Talbot and Julie Stinchcombe address
communication and eating, drinking and swallowing
difficulties in their students through a taste
programme.
7 Further reading
Psychiatry, stroke, stammering, interaction, hypernasality.
8 Ethics
The most positive outcome of the situation was seen
as one which would reconcile the mismatch between
Marks expectations and speech and language
therapy management.
Mark has severe dysarthria following a head injury
and is keen to use technology he has seen
promoted in the media. What happens if
therapists dont feel this would help? Helen
McGrane and Jois Stansfield use an ethics
approach.
12In my experience:
clinical liaison
groups
On our agenda each speech and language
therapist is given time to discuss challenging or
complex patients... We have all shared in and
learned from these discussions even when the
patient is not directly known to all present.
What are the benefits of a clinical liaison
group? Carol Harris and colleagues focus on
head and neck cancer, but the concept is as relevant
to other areas of practice.
Contents
Autumn 2001
Cover picture by Paul Reid.
Thanks to models and Stracathro
Hospital.
See back cover My Top Resources
www.speechmag.com
IN FUTURE ISSUES
ADULT LEARNING DISABILITY USING MUSIC PARENTS VIEWS AUTISM
REFLECTIVE DIARIES EARLY FEEDING
Back cover
My Top
Resources
In partnership with families and
health and social care workers, we
help people living with aphasia to
develop new skills for communicating
with confidence, so that they can
reconnect with their lives.
Find out from Tom Penman and
colleagues how Blobby Men, pebbles
and Hello magazine feature in the
work of the London Connect Centre.
COVER STORY
dementia
Making a difference
Guidance in promoting speech and language development through
Sure Start programmes is now available.
The framework, by James Law and Frances Harris of City
University, includes many examples of current Sure Start practice.
Although it has been written specifically for the cross-governmen-
tal programme to improve the life chances of young children in dis-
advantaged areas, the information is also relevant to all speech and
language therapists and those involved in planning services.
Adult-child interactions, home languages, the home and commu-
nity environment, carers, specialists and outcomes are covered.
Research notes summarise evidence-based practice and resource
notes illustrate good practice. Submissions are being sought for a
revised edition planned for 2003/4.
Sure Start will now, in its fifth year, have 437 sites in England. Extra
support is to be announced for programmes in rural areas and places
with small pockets of deprivation. A major six year evaluation is
underway. An initial snapshot survey suggests the programme is
making a difference for children and families in low income areas.
www.surestart.gov.uk
Promoting Speech and Language Development - Guidance for Sure
Start Programmes from DfES Publications, tel. 0845 602 2260, e-mail
dfes@prolog.uk.com, ref. SS/SPEECH.
news
SPEECH & LANGUAGE THERAPY IN PRACTICE AUTUMN 2001 2
The burden of caring for a person with autism at home
places huge stress on carers and their families, often leav-
ing them socially excluded or suffering mental ill health.
According to a report from the National Autistic
Society, having a child with autism spectrum disorder can
leave the whole family excluded from normal life. Major
disruption suffered can include loss of a career, neglected
siblings and broken marriages.
Half of all adults with autism are still living at home,
often with elderly parents caring for them. Many parents
report their fears as to what will happen to them when
they become too old or frail to continue caring for their son
or daughter.
Meanwhile, a book published by the society is a new guide
to living in an intimate relationship with a person who has
Asperger syndrome.
Author Maxine Aston has explored the relationships of
adults with Asperger syndrome as part of her academic
research, as a qualified couples counsellor specialising in this
area and from her own personal experience.
The books emphasis is on positive attitudes and strategies
for successful relationships.
A new law has made it easier for people with aphasia to get the
support of an intermediary when appearing as a witness in court.
Reporting on the implications of the Youth Justice and
Criminal Evidence Act 1999, Speakability explains intermedi-
aries are one of the special measures to help vulnerable wit-
nesses give best evidence in court. The intermediarys function
is to communicate to the witness the question they have to
answer and to communicate to the person asking the ques-
tions what reply the witness has given.
Speakability is working with the Home Office on guidance
which will define how the intermediary role differs from wit-
ness supporters, interpreters or appropriate adults. The
organisation is planning some workshops later in the year for
speech and language therapists who would like to know
more. It suggests they should be comfortable with having a
rather detached, non-partisan relationship with the client, as
it is very important that the intermediary is neutral.
Speakability, tel. 020 7261 9572 (contact Anne Keatley-Clarke).
Speech
comprehension
targeted
A major grant has secured
research aimed at improv-
ing the speech recognition
of people using cochlear
implants.
The research teams want
to quantify the amount of
information coded by the
cochlear nerve in response
to electrical stimulation
from the implant, and to
find ways to increase the
information transfer to
improve speech comprehen-
sion. Methods will include
computational studies and
perceptual experiments
with cochlear implant users.
It is possible the research
could lead to more people
being implanted, including
some who have residual
hearing and get slight ben-
efit from conventional
hearing aids. Cochlear
implantation increases the
probability that a child with
profound deafness will be
placed in a mainstream
school and reduces the
amount of special support
required. Even modest
improvements in speech
recognition would greatly
improve the quality of life
of the more than 900 adults
and 800 children in the UK
with a cochlear implant.
The three year project has
been funded by the
Engineering and Physical
Sciences Research Council.
Dr Nigel Stocks, University
of Warwick,
tel. 0247 652 2857, e-mail
ngs@eng.warwick.ac.uk.
Joined up agenda
A working party of people with aphasia have drawn up an Agenda for Change to deliver
the right services based on their own experience of living with the condition.
The twenty five requirements for the government to act on reflect the need for all profes-
sionals to take a more holistic approach to clients with aphasia. A section on best treatment
and therapy calls for more research, support for people with aphasia to contribute to service
development, adoption of good practice from abroad and resources for self-help groups and
information services. It recommends that equal weight should be attributed to the qualitative
experiences of people with aphasia as academic findings when evaluating the benefits of
treatments and services, and that research should include efforts to understand what non-
medical services and support mechanisms are of most benefit to people with aphasia.
Joined Up Talking, Joined Up Working from Speakability, tel. 020 7261 9572.
Whole family excluded
Fit to teach?
The increased likelihood of
teachers presenting with
voice problems, and the
value of preventative work,
is acknowledged in the gov-
ernments Healthy Schools
Programme.
The Voice Care Network
UK, which has long cam-
paigned for this recognition,
reports on the development
of two Department for
Education and Employment
publications, Fitness to
Teach. Both give guidance
on occupational health, at
length for medical
professionals and through a
shorter version for teachers
employers, managers and
tutors. The employers legal
responsibility for health risk
management is emphasised,
including the risk of voice
trauma. Referral to speech
and language therapy and /
or an ENT consultant is
recommended should
problems arise, and the
important role of prevention
briefly discussed.
www.dfee.gov.uk/hsht/
Voice Care Network UK, tel.
01926 864000,
www.voicecare.org.uk

Best evidence
Ignored or Ineligible? The reality for adults with autism spectrum disorders and The Other Half of Asperger Syndrome
are available from the NAS tel. 020 7833 2299, www.nas.org.uk. Autism Helpline, 10am-4pm, Mon-Fri, 0870 600 85 85.
SPEECH & LANGUAGE THERAPY IN PRACTICE AUTUMN 2001 3
news & comment
A way orward
Like Julie Baker (p.25), readers of this magazine frequently need the tenacity
of a terrier to find a way forward when our efforts are beset by problems.
The inroads being made by the profession in the dementia field compared
with 10 years ago is hugely encouraging (p.24-28) but has taken great effort
and perseverance. We are also seeing progress in understanding of how
services need to move forward to meet the needs of people living with
aphasia, with the pioneering work of the team at Connect (back page)
playing a significant part.
Over the past few years, a programme of increasing centralisation has
ensured clients get access to the most experienced and expert staff for the
most specialist procedures. This does, however, throw up other challenges for
professionals like Carol Harris and colleagues (p.12) who have to
communicate effectively to provide clients with the best service from start to
finish. The way forward they identified was a clinical liaison group, which
provides them with peer support for the development of professional skills to
take back to the multidisciplinary setting.
Different levels of response are needed for different situations. Although most
children with speech and language difficulties are managed very effectively
through a clinic-based service, Sarah Hulme and Barbara Sampson (p.20)
recognised that a multi-agency approach was required to meet the needs of a
small number of children with additional behavioural problems. Recognition
that such service developments are necessary is often the first step forward. A
simple audit enabled Janice Dey (p.18) to put a convincing case for the
establishment of a Valve Clinic, and a simple question - how do you know? -
led Kim Talbot (p.4) into developing a multidisciplinary taste programme
which addressed communication and eating / drinking issues in one go.
Contributors to this magazine put good ideas into practice then tell others. A
clear message from Joanna Manz (p.14) is that, although there is a lot of
good practice going on with children with special needs in mainstream
schools, the way forward is to get better at sharing it. Then, even in the
absence of hard evidence on which to base our practice, we at least have
useable guidelines by consensus.
Moving forward by consensus is not necessarily an easy concept for speech and
language therapists to take on board when much of our work has a significant
subjective, personal element. Using an ethics approach, as exemplified by
Helen McGrane and Jois Stansfield (p.8), can take some of the heat out of a
situation - even one which seems to present intractable challenges.
Speech & Language Therapy in Practice is popular with its readers because it
is practical and because the contributors, like you, are always looking for a
way forward.
...comment...
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Scope for Conductive
Education
The charity for people with cerebral palsy is con-
tinuing its work to highlight the role of conduc-
tive education in promoting independence.
Scope is hosting the 4th World Congress on
Conductive Education in London where they will
be joined by a number of international experts to
explore how disabled people can gain greater
equality in society through Conductive Education,
a learning system which enables people with neu-
rologically based movement problems to function
more independently. In addition to school and
training developments in relation to the
approach, Scope has developed a national net-
work of centres where preschool children are able
to prepare for mainstream or special primary
school through learning programmes based on
the philosophy of Conductive Education.
Scope, tel.020 7619 7200, www.scope.org.uk
Cerebral Palsy Helpline, tel. 0808 800 333.
Afasic move
Afasic, the UK charity representing children and
young adults with communication impairments, is
now at 2nd Floor, 50-52 Great Sutton Street, London
EC1V 0DJ, tel. 020 7490 9410, www.afasic.org.uk
The Afasic Helpline offers help and advice on a
range of issues concerning speech and language
impairments, including therapy, assessment,
Statements and Records of Special Educational
Needs and choosing a school. It is open from
11am-2pm Monday to Friday: 0845 3 55 55 77.
Aids on loan
Some of the newer communication aids are now
available for loan in Scotland from the CALL Centre.
The expensive and complex systems which need
to be trialled before purchase can be recom-
mended include DynaVox 3100 and MultiLevel
Message Mate 40. These personal communication
aids can be loaned following a CALL assessment
or to school teams providing joint teacher/speech
and language therapy assessment and ongoing
collaborative working.
The Centre has placed a database of access
equipment which can be loaned on the internet.
CALL Centre, tel. 0131 651 6235,
http://callcentre.education.ed.ac.uk.
Rebuilding work
The Alzheimers Society is planning to award
grants to former carers in an effort to help them
rebuild their lives.
While the Society is committed to supporting
carers throughout the whole process of caring,
from diagnosis through to bereavement and
beyond, it has not previously been able to go past
helping people who are caring on a day to day
basis. A grant from the Millennium Commission
means that people who have had their lives
altered by caring for someone with dementia will
have the opportunity to develop new or forgot-
ten skills and interests as they make the difficult
transition to a different kind of life.
Alzheimers Society, tel. 020 7306 0606, www.
alzheimers.org.uk.
education
SPEECH & LANGUAGE THERAPY IN PRACTICE AUTUMN 2001 4
you want to mprove
assessment through
observaton
cent-ocused work
ntegraton wth other
servces
Food for
thought
A school theme of cultural foods gave Kim
Talbot and Julie Stinchcombe the opportunity
to address communication and eating, drinking
and swallowing difficulties in their students
through a taste programme.
Setting the table...
I work in a special school in New Zealand that
caters for students from 5-21 years with a range
of disabilities. Many, particularly those with more
significant needs, have eating and drinking diffi-
culties and dysphagia. Frequently, I would hear
the phrases he likes it or he doesnt like it
when I was asking about a students food prefer-
ences. How do you know? was often met with
a reason that did not make sense. I began to ques-
tion what it was that led staff to make decisions
and assumptions around mealtimes, and to what
extent communication from the child was getting
through to them, as I suspected a mismatch.
In 1999, as part of the social studies curriculum,
some classes chose a theme around cultural foods.
The occupational therapist and I saw this as an
ideal opportunity to develop a better under-
standing of the students in our care by comparing
what was believed about them with their actual
responses through providing a range of foods and
observing and recording their reactions.
Ugh! Whats that?!
Our first aim was to provide a range of taste and
smell experiences. We began with cultural tastes
that fitted the theme work and followed that
with salty, sour, bitter and sweet. Morris & Klein
(1987) assert that strong tastes alert the nervous
system and sour and bitter facilitate more move-
ment. I looked at providing distinct flavours so
that, for example, responses to lemons could be
compared to responses to chocolate spread. It was
not an easy task to find foods that neatly fitted
the categories. The occupational therapist was
keen for the students to actively explore and play
with the foods, as a tactile stimulus, before eating.
A sheet was devised (figure 1) that enabled us to
record all the observations including taste, touch
and associated behaviours. We were already
aware that liked / did not like was not enough.
We carefully observed the students to ensure that
Read this
Figure 1 - Record sheet
FOOD/ EXPOSURE/ TEXTURE RESPONSE
TASTE AMOUNT
e.g. bread One slice moist To include: acceptance, rejection, turned head away,
vocalisations, crying, smiling, toleration, etc etc.
Possible conclusions
Well/unwell
SPEECH & LANGUAGE THERAPY IN PRACTICE AUTUMN 2001 5
education
their responses were recorded as accurately as
possible and we wrote as much detail as we could
(example in figure la). We began the recording
process and modelled for the staff the level of
detail needed. This was a time consuming process
but the staff were interested in the results and
quickly became skilled at making quality observa-
tions. The observing and recording not only gave
us a detailed overview of the students taste
responses, but also empowered the staff to look
more closely at the students.
Whats for dinner?
Our second aim was to develop the students
taste memory, including food preferences. The
literature suggests (Morris & Klein, 1987) that, by
a childs first birthday, many food preferences
have developed and that these change over time.
For the majority of the students, little was known
about their taste memory or preferences, and I
therefore decided part of my investigation need-
ed to focus on recognition and memory of food.
Information was also needed from families to
continue to build a picture of the student. A let-
ter was sent home for each student participating
(figure 2) to ascertain current food preferences
and any allergies. Where necessary, it enabled us
to discuss eating and meals with parents and allay
any fears.
Following the letter, the term (10 weeks in New
Zealand) was broken down as follows:
Week 1: Samoan foods eg. green banana, Taro,
fish.
Week 2: Tongan food eg. coconut, pineapple.
Week 3: Maori food, eg. kumara, hangi.
Week 4: European food, eg. potato, mince meat.
Week 5: Indian food, eg. spices, naan, curry.
Week 6: Asian food, eg. sweet and sour, rice, stir fry.
Week 7: salty food, eg. hot chips, crisps, feta cheese.
Week 8: sour foods, eg. lemon, lime, sherbet.
Week 9: bitter foods, eg. peppermint, soya sauce.
Week 10: sweet foods, eg. chocolate spread,
honey, jams, syrup.
The food chosen may have varied within the
classes but followed the culture / taste of this
programme which, in turn, fitted in well with the
class curriculum. There was a great deal of flexi-
bility within the food categories depending on
availability and ease of preparation. The foods
were negotiated between the occupational
therapist, class teacher and myself week to week,
and we also rotated the task of purchasing the
food.
The sessions were generally done once weekly
with the therapists. The session plan was straight-
forward, and manageable time-wise. There was
usually one food presented per session and occa-
sionally two. The sessions lasted approximately 15
minutes and were always before either lunch or
mid-morning snack. The students were given a
face massage that was familiar to them as a pre-
cursor to food. (This was designed from the
anatomy of the face and eating and from obser-
vations of other speech and language therapists
rather than following any specific technique.) The
students were allowed to touch the food and
experiment within its texture and shape, the
occupational therapist providing some students
with specially adapted trays or bowls to facilitate
this.
The students then either took the food to their
mouths spontaneously, were verbally encouraged
to do so, or had it placed on or near their lips.
Students were never forced or cajoled into eating
and would often initiate licking their fingers. Staff
also actively tasted the food and experimented
with it themselves, although this often took some
persuading! Once the tasting was over, the stu-
dents ate their own meal. Tube fed students were
also tube fed to prevent distress from the false
promise of lunch.
Figure 1a - Case example
FOOD/ EXPOSURE/ TEXTURE RESPONSE
TASTE AMOUNT
Pineapple 3-4 pieces - Chewed. Appeared to smell. Opened mouth for more. No vocalisations.
Kiwi fruit one whole fruit - Tipped head back. Smiled. Opened mouth for more. Chewed. Vocalised.
Figure 2 - Letter to parents
Date:
Name:
Dear Parent,
We are carrying out a tasting programme in
[name of child]s class. [Name of child] will
swallow the food if she wants to, however the
main aim is to taste it. The programme aims to
provide a range of taste experiences, which can
develop a better understanding of [name of
child]s tastes. The responses to the tastes will
be recorded and will contribute to a feeding
profile for her. The programme is aimed to be
for information gathering and assessment only
at this stage.
I would be grateful if you could complete the
following questionnaire and return it to school.
This will give us the background knowledge for
the programme.
1) Does [name of child] have any allergies to
foods or ingredients?
2) What is [name of child]s favourite meal?
3) Any suggestions for foods or flavours?
4) Any concerns, queries or advice?
Would you like information from school to carry
out the programme at home?
Thank you for your time. If you have any
questions please do not hesitate to contact me
at Base School. I will keep you updated and
informed over the term and will be happy to
discuss any findings with you.
Kim Talbot
Speech and Language Therapist
The students
were allowed to
touch the food
and experiment
within its
texture and
shape

education
SPEECH & LANGUAGE THERAPY IN PRACTICE AUTUMN 2001 6
Say ahhhhh
Our next aim, of oral hygiene, was built into the
programme for two main reasons. The first was to
indicate to the student that the tasting session
was beginning and ending. At the beginning of
each session the student was given a face massage
and lukewarm water was used to swab the mouth
to alert the students that tasting was to happen.
At the end of the session, students had the same
process with cold water; this alerted them that
the session was over and stimulated their oral cav-
ity before lunch.
The second reason was to encourage and main-
tain good oral hygiene practice within the class.
Many students needed to have their teeth
brushed for them and to have support with clean-
ing the mouth. Students who were tube fed and
only tasted the food also needed to have the oral
cavity cleaned to prevent aspiration of food from
the mouth. This helped to reduce any risk from
our intervention.
Having oral hygiene as part of the programme
was useful as the students needed individual oral
hygiene plans, which were then supported and
established in class.
Mmm, that was good...Any afters?
The project had some interesting results. It was
important that we were able to review each stu-
dent individually and analyse
and summarise the findings for
class staff and parents. For some
students the findings confirmed
previous beliefs about them
and their diets; for others it
showed the student to be more
or less capable of discriminating
tastes. One student who was 21
years old was thought to have
little or no discrimination of
tastes and was known for eat-
ing chillies and onion with no
reaction; however, on closer
inspection and recording, he
was found to have distinctly dif-
ferent responses to tastes. For
example, he would have an
increase in saliva for lemons
and his eyes would water on
onions. This gave us a more
comprehensive picture of each
student and their sensory
process for taste.
Work has begun on taste
memories and food preferences, although consid-
erably more data is still needed to have a compre-
hensive picture. More work is needed on examin-
ing changes over time and consistency of respons-
es and I hope that continued focus will promote
this. Overall, though, we have a better under-
standing of our students and what they like or
dont like for lunch.
The programme has been taken on not only by
the staff but also by other speech and language
therapists in the area. They adapted the pro-
gramme and had variations on the results. Since
the initial programme it has been repeated with
new students and revisited with others. This has
enabled us to find comparisons and changes from
last year. The teachers have also taken more of an
active role now they are familiar with the format
and the recording sheets.
A team approach is encouraged at the school,
and my piece in the team puzzle here was to facil-
itate structured and precise observations of the
student as well as being an observer myself.
Asking relevant questions and offering support to
the team members in observing the students
more closely avoided actions and behaviours sim-
ply being accepted without question as part of
the students repertoire. A successful outcome
was the teams ability to further generalise obser-
vations to other situations, so that students were
now seen as communicating all day.
In addition to improved awareness of communi-
cation, I was able to assess the textures of food for
safety, and empower the staff to try foods that
they were unsure of without supervision. A bal-
ance was achieved, with class staff trying new
things without being overly adventurous; this
largely came with education around risky foods
and the students own individual needs.
This programme was tried mainly on teenage
and adult students ini-
tially and then expand-
ed to include primary
age students. It can be
used with students of
any age for fact find-
ing, or for developing
and refining your
knowledge of them. It
needs to be run regu-
larly so development
and change can be
monitored, and may be
particularly useful for
gathering information
on a new client, or
when someone has a
growth spurt or is in
the process of a transi-
tion. For the students
we worked with, the
profile proved invalu-
able when they left
school and went to day
centres.
Kim Talbot is a speech and language therapist
now back in the UK at St. Elizabeths school for
children with epilepsy. She was supported in writ-
ing this article by Julie Stinchcombe, occupational
therapist at Arohanui school, New Zealand.
Reference
Evans Morris, S. & Dunn Klein, M. (1987) Pre-feed-
ing skills. Therapy Skill Builders, Texas.
Do I enable others to
observe, record and
respond to a clients
communication in
everyday situations?
Do I recognise that
people need to be
familiar and confident
with procedures
before they can use
and generalise them?
Do I spot opportunities
to integrate my goals
with those of other
professionals?
Reflections

Kim Talbot
A successful
outcome was the
teams ability to
further generalise
observations to
other situations, so
that students were
now seen as
communicating
all day.
SPEECH & LANGUAGE THERAPY IN PRACTICE AUTUMN 2001 7
further reading
HYPERNASAllTY
Habermann, W., Kiesler, K., Dornbusch, H.J., Friedrich, G. (2000)
Hypernasalitya rare initial symptom of a cerebellar astrocytoma. Int J
Pediatr Otorhinolaryngol 55 (3) 207-10.
Nasality is a disorder due to nasal resonance, which may be induced by a variety
of etiologies. Transitional hypernasality is frequently seen in children after ade-
noidectomy. The alleged post-surgical hypernasality in the case presented was
shown to be related to the late detection of an astrocytoma of the cerebellum
and the brain stem in a 6-year-old boy. This case was characterized by increased
hypernasality which failed speech therapy. A developing one-sided vocal fold
palsy in combination with an ipsilateral soft-palate palsy indicated further
investigation. Computerized tomography (CT) and magnetic resonance imaging
(MRI) revealed a brain stem-tumor with a maximum size of 6 cm involving parts
of the cerebellum. These findings demonstrated the need for a strict follow-up,
even after adenoidectomy, in the presence of hypernasality for identifying con-
current etiologies as well as cases suitable for speech therapy.
lURTHER
READlNG
Ths reguar eature
ams to provde
normaton about
artces n other
journas whch may
be o nterest to
readers. The Edtor
has seected these
summares rom a
Speech 8 language
Database comped
by Bomedca
Research lndexng.
Every artce n
over thrty journas
s abstracted or
ths database,
suppemented by a
monthy scan o
Nedne to pck out
reevant artces
rom others.
To subscrbe to the
lndex to Recent
lterature on
Speech 8
language contact
hrstopher Norrs,
Downe, Badersby,
Thrsk, North
Yorkshre YO; (PP,
te. o+; (o8,
ax o+; (o.
Annua rates are
Ds (or vndows
,):
lnsttuton L,o
lndvdua Lo
Prnted verson:
lnsttuton Lo
lndvdua L(.
heques are
payabe to
Bomedca
Research lndexng.

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PSYHlATRY
Beitchman, J.H., Wilson, B., Johnson, C.J.,
Atkinson, L., Young, A., Adlaf, E., Escobar,
M., Douglas, L. (2001) Fourteen-year fol-
low-up of speech/language-impaired and
control children: psychiatric outcome. J Am
Acad Child Adolesc Psychiatry 40 (1) 75-82.
OBJECTIVE: To examine the association
between early childhood speech and language
disorders and young adult psychiatric disorders.
METHOD: In a longitudinal community study
conducted in the Ottawa-Carleton region of
Ontario, Canada, interviewers administered
structured psychiatric interviews to age 19 par-
ticipants who were originally identified as
speech-impaired only, language-impaired, or
nonimpaired at age 5. The first stage of the
study took place in 1982 when participants
were 5 years old, and the latest stage of the
study took place between 1995 and 1997 when
participants had a mean age of 19 years. This
report examines the association between early
childhood speech/language status and young
adult psychiatric outcome. RESULTS: Children
with early language impairment had significantly
higher rates of anxiety disorder in young adult-
hood compared with nonimpaired children. The
majority of participants with anxiety disorders
had a diagnosis of social phobia. Trends were
found toward associations between language
impairment and overall and antisocial personality
disorder rates. Males from the language-
impaired group had significantly higher rates of
antisocial personality disorder compared with
males from the control group. Age of onset and
comorbidity did not differ by speech/language
status. The majority of participants with a disorder had
more than one. CONCLUSIONS: Results support
the association between early childhood speech
and language functioning and young adult psy-
chiatric disorder over a 14-year period. This
association underscores the importance of
effective and early interventions.
STROKE
von Koch, L., Holmqvist, L.W., Wottrich, A.W., Tham, K., de Pedro-Cuesta,
J. (2000) Rehabilitation at home after stroke: a descriptive study of an
individualized intervention. Clin Rehabil 14 (6) 574-83.
OBJECTIVE: To describe the content of a programme involving early hospital dis-
charge and continued rehabilitation at home after stroke. DESIGN: Quantitative
and qualitative descriptive study of an intervention within the context of a ran-
domised controlled trial. SETTING: Huddinge University Hospital, Stockholm,
Sweden. SUBJECTS: Forty-one patients, moderately impaired after stroke, rehabil-
itated by a team of six occupational, physical, and speech and language therapists.
RESULTS: The average duration of the programme was 14 weeks, the mean
number of home visits 12, and the median total time consumption 23 hours and
20 minutes, of which face-to-face contact with the patient constituted 54%. The
rehabilitation process was pursued by the patient and the therapist in partnership.
Supported by the team the therapists incorporated a wider domain of activities
than usual and left a considerable amount of the training to self-directed activities.
The most common foci of the visits were speech and communication, ADL activities
and ambulation. When planning the intervention the therapists paid attention
to discrepancies between the desires and abilities of the patient on the one
hand and environmental demands on the other - discrepancies detected
through observation of the patient in the home environment. CONCLUSIONS:
The home environment offers therapists working in a team opportunities to
adopt a behaviour that enables patients with moderate neurological impairments
after stroke to resume responsibility and influence over their rehabilitation
process, resulting in an individualized rehabilitation programme that varies in
duration, content and frequency of home visits.
STANNERlNG
Ginsberg, A.P. (2000) Shame, self-con-
sciousness, and locus of control in people
who stutter. J Genet Psychol 161 (4) 389-99.
Stuttering is a multidimensional disorder,
including psychological as well as physiological
elements. This investigation of the value of 3
psychological constructs (shame, self-conscious-
ness, and locus of control) in the prediction of 3
self-reported behavioral dimensions of stutter-
ing (struggle, avoidance, and expectancy)
revealed shame and self-consciousness to be
significant psychological predictors of the
selected dimensions of stuttering, whereas
locus of control was found not to be. Certain
demographic elements, including affiliations
with others who stutter, were also determined
to be predictive of the stuttering dimensions.
The present findings and their implications for
theory, research, and practice are discussed.
lNTERATlON
Pennington, L., McConachie, H. (2001) Predicting patterns of interaction
between children with cerebral palsy and their mothers. Dev Med Child
Neurol 43 (2) 83-90.
Children with cerebral palsy (CP) have often been described as passive communi-
cators. Their familiar conversation partners tend to direct and control interaction.
Such conversation patterns may have various precursors: childrens motor impair-
ment, their intelligibility difficulties, and/or their level of cognitive development.
To test the comparative influence of these factors, measures of motor function,
speech, communication, cognitive and language skills were applied in 40 chil-
dren (18 males, 22 females) with CP who were aged from 2 years 8 months to
10 years. These variables were correlated with measures relating to interaction
patterns to investigate whether individual features predicted communication
style. In this group, poor speech intelligibility was the main predictor of restric-
tive communication patterns, such as fewer child-initiated conversation
exchanges, more simple child communicative acts such as yes/no answers and
acknowledgements of the other partners messages. Results support the provision
of therapy to increase childrens intelligibility, whether spoken or augmented, such
as the introduction of communication aids and training programmes for parents.
ethics
SPEECH & LANGUAGE THERAPY IN PRACTICE AUTUMN 2001 8
Strength in
compromise
Mark (26) has severe dysarthria following a head injury. He accepts AAC as a short-term measure,
but is keen to use technology he has seen promoted in the media to improve his oral skills.
What happens if speech and language therapists dont feel this would help? Helen McGrane and
Jois Stansfield seek a way forward using an ethics approach.
thics in practice is rarely easy. Speech
and language therapists make decisions
daily regarding who is to be offered
therapy (prioritisation), and the most
suitable intervention for clients. The
Royal College of Speech and Language Therapists
provides a code of ethics to guide decision-making
(RCSLT, 1996), acknowledging that ethical principles
must be applied in considering the various cir-
cumstances of each individual case. This code of
ethics encompasses the generally acknowledged
principles of ethics which are considered to be the
foundational points in health care (Beauchamp,
1994). These principles are
1. beneficence (do good)
2. non-maleficence (do no harm)
3. respect for autonomy
4. justice.
Seedhouses ethical grid (figure 1) was devel-
oped to facilitate decision making with explicit
reference to aspects of moral reasoning in health
care (Seedhouse & Lovett, 1992). This framework
enables one to justify decisions and actions in
moral terms. The grid consists of detachable
boxes in a framework of four different coloured
layers representing:
the principles behind health work (Blue)
the duties one believes one has (Red)
the general nature of the outcome to be
achieved (Green)
the pertinent practical features (Black).
Acknowledging that each circumstance is differ-
ent, consideration of every box is not essential;
however, it is important that the situation in ques-
tion is considered in the light of each coloured
layer (Seedhouse & Lovett, 1992).
E
Here, we consider the issues involved in the case
of Mark, a 26 year old man with a head injury as
a result of a road traffic accident. The Seedhouse
ethical grid (references italicised in the following
text) was the model used in the decision-making
process on the best intervention for him.
On referral, Mark was three and a half years
post-trauma. It may therefore be assumed that
Mark is near the end of any spontaneous recovery
period and must use his present abilities and
adapt to his impairments to facilitate his commu-
nication skills. Mark is wheelchair bound although
he reports some slow recovery of his lower limbs.
He was observed to have a stable sitting balance
and reasonable head control with slow neck
movement. He doesnt report any auditory or
visual difficulties. He has a high level of compre-
hension and uses complex linguistic structures
with his Lightwriter, with no apparent dysphasia.
Marks full medical notes were not available;
however, certain tentative hypotheses may be
offered concerning his oral abilities. An oro-facial
examination report on his first visit to the clinic
diagnosed severe dysarthria. Mark displayed flac-
cid muscle tone in his neck, head and facial
region. He also displayed right brachiofacial
weakness and apraxia of tongue, lip and left limb
movement, suggesting some higher cortical dys-
function (Lindsay & Bone, 1997).
Mark requires excessive effort to phonate, which
- along with slow, low, monopitched vocalisations
and the lack of volume variation - suggests bilat-
eral pseudobulbar (spastic) dysphonia (Greene &
Mathieson, 1989). His inability to co-ordinate
appropriate closures in the larynx, oral cavity
........... and the out-of-phase quality of breathing
and phonation (Greene & Mathieson, 1989; 252)
also fits with this tentative diagnosis.
These observations are clearly subjective and
ideally would have been supported by objective
assessment and confirmation of Marks exact med-
ical status. They do, however, serve to illustrate
the severity of Marks condition which was a fac-
tor considered in the decision-making process
(degree of certainty of evidence on which action
is taken - Black).
Issues which arose before Mark was accepted as
a client in the clinic described below have a bear-
ing on the contract offered to him.
Mark lives with his two parents and four sisters
(two older and two younger). He was a mature
student prior to the accident and now continues
his education with the assistance of a sister who
accompanies him to college to help the recording
of relevant lecture notes.
Mark and his family had some disputes with
their local speech and language therapy service.
The family did not accept the prognosis for Mark
as a total communicator, that is, with some single
vocalisations but mainly an alternative and aug-
mentative communication (AAC) user (wishes of
others - Black). Mark and his family were adamant
that he could speak (single words) at home but he
was unable to demonstrate this in the clinical
environment (disputed facts - Black). His family
refused to accept concurring speech and language
therapists diagnoses and sought numerous subse-
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SPEECH & LANGUAGE THERAPY IN PRACTICE AUTUMN 2001 9
ethics
quent opinions to find some therapy which would
meet Marks needs as they saw them.
Immediately prior to referral, the only support
Mark was receiving for communication was from
a voluntary organisation and his family. His moth-
er and sister implemented a daily programme of
muscular exercises and Proprioceptive
Neuromuscular Facilitation (PNF) techniques
taught at this organisation. During this time
Marks father saw an article in the
local newspaper claiming new tech-
nology had been developed which
would help cure speech difficulties
(Hendry, 1998) (disputed facts -
Black). As a result, he sought out a
clinic which was able to provide this
facility - the electropalatograph (EPG).
This instrument is designed to
record the location and timing of
tongue contacts with the hard
palate during continuous speech.
EPG may be useful in the treatment
of dysarthria (Main et al, 1997); how-
ever, when considering EPG as a pos-
sible therapeutic intervention, it is necessary to
ensure that the clients speech problem is essen-
tially one of lingual placement or dynamics. Other
factors such as velopharyngeal incompetence will
affect the overall prognosis for treatment out-
come (Hardcastle et al, 1991). Although Mark had
lingual placement difficulties, he also has difficul-
ty initiating and maintaining volitional phona-
tion, along with velopharyngeal incompetence.
This was noted in the decision-making process
(degree of certainty of evidence on which action
is taken - Black).
Marks suitability for EPG was assessed by the
speech and language therapist at the specialist
clinic. The resulting report stated that, as Mark
had very severe dysarthria, he did not demon-
strate adequate range of movement or tongue
control for EPG to benefit him. The report sug-
gested the most appropriate computer pro-
gramme to assist in achieving longer and more
systematic use of voice was SpeechViewer (do
most positive good - Red). Mark
refused the offer of
SpeechViewer on two occasions,
asserting that he should be
offered EPG (respect autonomy -
Blue). After much discussion he
agreed to try SpeechViewer with
a view to improving his oral
functioning. It was agreed to
reconsider this after five weeks
of individual intervention, which
would also allow for any under-
performance in the initial assess-
ment (disputed facts - Black).
Marks motivation to succeed
was extremely high. He worked hard to improve
the strength and prolongation of his phonation
using SpeechViewer. Tongue and lip exercises were
attempted to improve strength and endurance
(Hibberd & Jinks, 1998) but to no avail. Therapy
also aimed to promote volitional vocalisation and
tongue movement. At home Marks family contin-
ued PNF and oral exercises. Mark also continued to
receive support from the voluntary organisation.
Although there was some improvement in
Marks length of phonation after the therapy
block, he continued to display inconsistency in his
ability to initiate and prolong phonation. The
decision regarding EPG suitability was based on
research evidence and clinical knowledge on real-
istic outcomes for using this technique, otherwise
the ethics of do most positive good and most ben-
eficial outcome (Green) for Mark would have
been disregarded. It was explained to Mark that
EPG was still not considered to be beneficial for
him at this time. Counselling skills were used
offering empathy and advice while acknowledg-
ing Marks feelings of disappointment. The clinic
offered him continuation of speech and language
therapy using SpeechViewer for a mutually
agreed pre-determined period (most beneficial
good - Green). Mark was understandably disap-
pointed but agreed to continue with
SpeechViewer, being the only speech and lan-
guage therapy input he could have.
During the intervention period two further
issues arose:-
1.Should Mark be referred for further therapy at
the end of the current contracted therapy block
and, if so, to whom? The clinic he was attending
is a service which only takes clients on a short-
term block basis. Marks previous community clin-
ic was reluctant to maintain him on its books,
partly due to previous disputes, but mainly
because he was considered to be on a plateau and
did not fit their criteria for further intervention.
However, Mark needed to be recorded some-
where in the event of the emergence of suitable
new technology (resources available - Black).
2. A meeting between Mark, his speech and lan-
guage therapist and an AAC specialist strongly
advocated the desirability of Mark joining an
AAC group with members of his own age (tell the
when considering
EPG as a possible
therapeutic
intervention, it is
necessary to ensure
that the clients
speech problem is
essentially one of
lingual placement
or dynamics.
Figure 1 Ethical Grid
ethics
SPEECH & LANGUAGE THERAPY IN PRACTICE AUTUMN 2001 10
truth - Red and create autonomy - Blue).
This was available for a five week block in
the same clinic and intended focusing on
areas deemed useful for Mark, for exam-
ple, telephone usage as Marks mother
currently takes his calls. At this stage
Mark declined to attend as he had done
on previous occasions (respect for auton-
omy - Blue) (resources available - Black).
Reconciliation
The most positive outcome of the situa-
tion was seen as one which would recon-
cile the mismatch between Marks expec-
tations and speech and language therapy
management. To achieve this reconcilia-
tion, Mark had to be open to advice and
trust, and speech and language therapy
management had to incorporate ethical
considerations explicitly. Figure 2 high-
lights the grid boxes which were used in the deci-
sion-making process and which were thought to
create the highest degree of rectitude given
Marks circumstances.
These influenced the outcome in the following
ways:
1. The levels of practicality (Black Boxes)
The clinic in question had the technological
resources which Mark wished to access. However,
Mark was not deemed a suitable candidate
because his severe neurological impairment didnt
allow him meet the requirements of the EPG.
Mistrust had developed between family members
and speech and language therapy management
based on disagreement with previous
speech and language therapy diagnoses.
Also as a result of newspaper and journal
articles the family felt that the speech and
language therapy service was holding out
on them. The situation was discussed in
depth with the family and Mark was given
the opportunity to display his oral func-
tioning. This also reflected the level of
duties (Red) speech and language therapy
management felt towards Mark and his
family. As a result, the levels of trust
between the family with the speech and
language therapy clinic grew, encouraging
a more discursive open relationship,
although this never became fully comfort-
able.
2. The general nature of the outcome to be
achieved (Green Boxes)
The main focus at this level of consequences was
the most beneficial outcome for Mark. Initially
there was a mismatch between Marks and his
parents perceptions of what this should be (EPG
and speech) and the view of the speech and lan-
guage therapy clinicians (AAC). The dilemma
arose as to whether to offer a management pack-
age which the speech and language therapists
believed could not benefit Mark or to risk Mark
abandoning the clinic situation again. The use of
counselling skills in acknowledging Marks and his
familys emotional responses to speech and lan-
guage therapy recommendations and offering
discursive explanations enabled some resolution.
While the most beneficial outcome for the
patient is acknowledged, the most beneficial out-
come for oneself, that is, the individual speech
and language therapist, must also be noted. At
times, personal outcomes which were going to be
satisfactory for the speech and language therapist
were in direct opposition to those which were
going to be satisfactory for Mark and his family.
This was particularly the case when Mark was dif-
ficult to place because of differing perceptions of
need, levels of practicality and pre-
vious confrontations between the
family and the speech and lan-
guage therapy service. It is impera-
tive that speech and language ther-
apists analyse their personal contri-
bution in the light of the justice
principle (Beauchamp, 1994) when
prioritising caseloads, and be aware
of the potential for subjective views
to be a factor - however subtle - in
influencing decision-making.
3. The level of duties (Red
Boxes)
It was felt that the importance of
telling the truth could not be over-
emphasised and was felt to complement do most
positive good for Mark. While Mark needed to
understand facts about his impairments and prog-
nosis, hope could not be taken away from him. It
was reiterated that regaining any speech would
be at best a very long-term process for him. Mark
was advised that AAC would enable him to com-
municate his needs while he worked on his voice,
and the benefits of attending an AAC group were
discussed. This level of duties also involved
onward referral, ensuring Mark didnt just disap-
pear from the system. The speech and language
therapy service manager addressed and
resolved this issue to the satisfaction of
both Mark and the service.
4. The principles behind health work
(Blue Boxes)
This is said to be the most important level
in the grid as it indicates the basic inspira-
tion of health care (Seedhouse & Lovett,
1992). One aim of speech and language
therapy management was to enable Mark
to have a heightened control over his
own life (create autonomy). This was felt
to best be promoted within the realm of
an AAC age-appropriate group. Group
activities aimed to encourage active par-
ticipation in the communication process
and also focused on telephone skills,
therefore fostering more independence
in Marks life. Balanced against this was
the principle of respecting autonomy especially
when Mark refused the use of SpeechViewer on
two occasions and had declined a place within an
AAC group on previous occasions.
Two issues which impacted on Marks expecta-
tions of the speech and language therapy service
remain unresolved:
1. There is a gap within NHS provision for the
chronic needs of young head injured individuals
as their circumstances change over their lifetime.
This gap is somewhat filled by voluntary organisa-
tions; however, this appears to be insufficient for
many clients such as Mark.
2. There is a tendency by the media to overstate
the benefits of new approaches to disability. The
balance between promoting new technology and
avoiding the suggestion of miracle cures is a diffi-
cult one to achieve.
It was felt that the successful outcome of the
intervention would be demonstrated if Mark
agreed to attend an AAC group and further block
intervention could be agreed, thus reconciling the
mismatch between the clients expectations and
speech and language therapy management.
Happily, this was the final outcome. Further thera-
py was eventually agreed with Mark, encompassing
work with SpeechViewer and AAC techniques. Gillis
(1996) advises that the process of family adjustment
to a family member with Traumatic Brain Injury
resulting in acceptance is an ongoing process. She
states that denial is a coping mechanism which fam-
ilies use to get them through a situation. Clinicians
must work with families to find a balance between
hope and reality (Gillis,1996;297). Using the guid-
ance of Seedhouse & Lovetts (1992) ethical grid the
positive outcome of this case suggests that this
intervention has gone some way in achieving this.
Helen McGrane is a PhD student and Jois
Stansfield is Head of the Department of Speech
and Language Sciences, Queen Margaret
University College, Edinburgh. Both are speech
and language therapists. Readers are also
referred to a previous ethics article Whose right?

Mark
needed to
be recorded
somewhere
in the event
of the
emergence
of suitable
new
technology
Figure 2 Grid boxes used in decision-making process
SPEECH & LANGUAGE THERAPY IN PRACTICE AUTUMN 2001 11
ethics
- Whos right? by Jois Stansfield and Christine
Hobden which appeared in the Winter 99 issue of
Speech & Language Therapy in Practice.
References
Beauchamp, T. (1994) Four principles approach. In
Gillon, R. (Ed) Principles of health care ethics. John
Wiley & Sons Ltd.
Gillis, R. (1996) Traumatic brain injury rehabilita-
tion for speech-language pathologists.
Butterworth-Heinemann. USA.
Greene, M. & Mathieson, L. (1989) The voice and its
disorders. 5th edition. Whurr Publishers Ltd. London.
Hardcastle, W., Gibbon, F. & Jones, W. (1991)
Visual display of tongue-palate contact: elec-
tropalatography in the assessment and remedia-
tion of speech disorders. British Journal of
Disorders of Communication 26; 41-74.
Hendry, S. (1998) Hi-tech palate makes it good to
talk. In Evening News paper.
Hibberd, J. & Jinks, C. (1998) Muscle specificity:
strength, endurance and functional improvement.
Speech & Language Therapy in Practice Autumn.
Lindsay, K. & Bone, I. (1997) Neurology and neu-
rosurgery illustrated. Churchill Livingstone. UK.
Main, A., Kelly, S. & Manley, G. (1997) Teaching
the tongue and looking at listening. Bulletin of
the Royal College of Speech & Language
Therapists November, 8-9.
RCSLT (1996) Communicating Quality 2. Royal
College of Speech & Language Therapists, London.
Seedhouse, D. & Lovett, L. (1992) Practical medical
ethics. John Wiley & Sons Ltd.
Resources
Lightwriter - available from Toby Churchill, tel.
01223 576117, www.toby-churchill.com.
SpeechViewer - UK suppliers include Don
Johnston Special Needs, tel. 01925 241642.
Electropalatography - the Reading EPG 3 system is
supplied by Millgrant Wells Ltd, tel. 01788 561185.
A new windows version of EPG is available from
Laryngograph Ltd., tel: 0207 387 7793 or from EPG
Enterprises, Research and Innovation Office,
Queen Margaret University College, Edinburgh.
Communication aid
funding
A new charity, Speakeasier, is providing commu-
nication aids for people with multiple sclerosis
who cannot access other funding.
Steve Brisk, who has had MS for 20 years, was
shocked to discover that while people who are
unable to walk can have a wheelchair on the NHS,
those who lose the ability to talk cannot necessarily
get a communication aid. He persuaded Huw
Evans of financial sector software specialists
Marlborough Stirling to chair the charity, and
fund its first 2500 speech synthesiser.
It is estimated there are around 85,000 people in
the UK with MS. Around five per cent of them
experience acute communication difficulties.
Speakeasier, PO Box 410, Cheltenham GL52 9GH, tel.
01242 674006. (Donations by cheque are welcome.)
Do I work with clients and
families to establish trust and
resolve mismatches of
expectation?
Am I able to continue with a
client where there is a history
of disagreement?
Does our service keep a record
of clients who may benefit
from future developments in
technology?
Reflections
news extra. . . news extra. . . news extra. .
The Danish instigator of Johansen Sound Therapy is
coming to the UK to train others in the approach.
The four day training with Dr Kjeld Johansen
includes background theory on the effect of sen-
sory deprivation on learning (including dyslexia),
and topics such as auditory sensation and per-
ception, auditory acuity, and auditory laterality.
Participants learn to use audiometry and dichotic
listening as diagnostic tools.
Speech and language therapist Camilla Leslie will
cover the particular application of the technique
to speech and language therapy. She believes
that children with receptive, expressive and written
language disorders can benefit, as can adoles-
cents and adults with language and/or literacy
difficulties. The approach aims to enhance auditory
processing skills so that the client becomes able
to benefit more from the support they are
already receiving and requires less input overall.
Johansen Sound Therapy involves a child in lis-
tening to specially-recorded, customised tapes
for 10 minutes per day, for up to 9 months.
9-12 October, 2001, Edinburgh - details from
Camilla Leslie, tel. 0131 337 5427.
Children in Scotland with severe, low-incidence
disorders of speech and language no longer
have to travel to England for residential care.
Donaldsons College in Edinburgh, traditionally
a provider of residential and day placements for
children who are profoundly deaf, has opened
The Speech and Language Resource, funded by
the Scottish Executive. In the past, many of the
children who are attending would have been
sent to specialist schools in England as there was
no national provision in Scotland specifically tai-
lored to their needs.
Training is high on the agenda, and Donaldsons
has set up a training partnership with Afasic and
I CAN, the two national charities working for
children with speech and language impairments.
The training - typically one day courses - is open
to professionals and parents. Future events
include an Afasic training week from Mon 5 - Fri
9 November 2001 (functional language; selective
mutism; dyspraxia; secondary aged pupils; bilin-
gual issues.) The I CAN courses are: 30 October,
2001 - Intensive interaction; 1 February, 2002 -
multidisciplinary approach with nursery children;
15 March, 2002 - Communication in the classroom;
12 September, 2002 - pragmatic impairment.
Details from Marion Fletcher, Head of Speech
and Language Unit, Donaldsons College, tel.
0131 337 9911,
e-mail: marionfletcher@donaldsons-coll.edin.sch.uk.
New independent centres for rehabilitation of
people with brain injury plan to work alongside
local and regional NHS services.
Priory Rehabilitation Services now have a five
bedded unit at their Unstead Park neuro-rehabil-
itation complex in Surrey for people with chal-
lenging behaviour following brain injury who
would not be suitably placed on an acute ward.
The newly built Priory Rehabilitation Centre
Peterlee in County Durham specialises in intensive
cognitive rehabilitation after brain injury, and
provides the only dedicated Persistent Vegetative
State service in the North of England.
www.prioryhealthcare.co.uk
In a separate development, The Royal Star and
Garter Home for disabled ex-service men and
women is to diversify into mental health care
and expand provision in England beyond London
and the south east. Plans include building a new
40 bed dementia care home in partnership with
another specialist care provider and funding res-
idential and nursing placements.
www.starandgarter.org.
Independent provider
developments
National centre for Scotland
Sound therapy
Training places
needed
A college which provides disabled adults with
residential training for work is concerned that
demand for places is outstripping supply.
Fifty four per cent of the students at Queen
Elizabeths Foundation Training College last year
gained employment immediately after their
course which the college compares favourably
with the able bodied rate of 40 per cent. With a
two year waiting list for places, a spokesman
said, The Training College is particularly con-
cerned about the lack of facilities and therefore
the lengthy waiting times as they are aware that
many people lose the impetus to remain inde-
pendent after such a long period of time and
may never embark upon a training course and
consequently never re-enter employment.
in my experience
SPEECH & LANGUAGE THERAPY IN PRACTICE AUTUMN 2001 12
he delivery of head and neck cancer ser-
vices over recent years has been restruc-
tured as recommended by Calman & Hine
(1994) and the NHS Cancer Plan (2000),
with surgery, radiotherapy and joint clinics
centralised, and follow-up rehabilitation including
speech and language therapy and nursing care
organised locally. Similar patterns of service deliv-
ery are offered to other patient groups; for exam-
ple, those with cleft palate. Prior to this, acute
work was spread more widely geographically,
being carried out at local district hospitals, and
more therapists, sometimes with less experience,
saw fewer patients all the way through from the
time of diagnosis on a local service basis. The
change has benefited patients, as staff providing
the specialist services have a wealth of experience
and expertise. However, patients are now often
travelling significant distances and across differ-
ent Trusts for their care. Speech and language
therapy services have been challenged to produce
a cohesive and effective service with clear, well
coordinated delivery across these different sites.
In response to this we have found that a Clinical
Liaison Group has been pivotal in us being able to
develop a better speech and language therapy ser-
vice. This concept could have applications to other
groups of therapists who share patients, or for
groups of therapists within the same clinical field.
Cohesive service
The need to have good communication between
professionals when patients are travelling across
different Trusts and Counties for their care is para-
mount (Edwards, 1997). We were aware that com-
munication was not always as effective as it should
have been because the people involved werent
aware of the different circumstances in different
places, so expectations were sometimes unrealistic.
In establishing the group three years ago, our first
and foremost aim was to ensure a more cohesive
service and to address the communication issues
central to this (figure 1). Clearer care pathways
needed to be developed, such as for equity of
access to surgical voice restoration management.
The clinical liaison group has achieved far more
than these original aims, and now encompasses a
wider remit that includes protocol development
across Trusts, training in a specialised area, peer
group supervision, and offers clinical perspectives
to management strategy development. It has led
to a strong head and neck speech and language
therapy team that is not fragmented by distance.
The core difference between a special interest
group and our clinical liaison group is that our
you want
to coordnate servces
across derent stes
peer support or case
management
to bud a strong team
Read this
meetings are primarily based on discussion of patients
on our mutual caseload. In contrast, a special interest
group usually has presentations about a clinical topic
to a larger group and might include discussion of
patients not known to anyone else attending.
The clinical liaison group consists of eight speech and
language therapist specialists in head and neck cancer
from five Trusts who meet termly. In the interimthere
are reports and telephone conversations about the
patients, but the gains of meeting in person have
been significant. We have also invited the Head and
Neck Liaison Nurse to join the group as she is often
able to contribute a valuable overview of the
patients. As the number of health professionals
involved in the team caring for head and neck cancer
patients is large, we could potentially evolve to be a
large multidisciplinary group. However, we aim to
keep it small and with a predominantly speech and
language therapy membership so we can remain
focused on our own profession and our case man-
agement. Were we to increase the numbers or dis-
ciplines of the clinical liaison group, or move the
focus from discussion of individuals, we would lose
the essence of what makes the group work. We
are able to further and develop our own profes-
sional skills to take back to our own multidiscipli-
nary setting with confidence, as we have peer sup-
port for what we as individuals are doing.
Reflective practice
We meet for two and a half hours once a term. On
our agenda each speech and language therapist is
given time to discuss challenging or complex
patients. Problem sharing and reflective practice
approaches are used. Discussions might include
therapy techniques, communication issues that
arose, or problems encountered by the patient
from treatments, disease recurrence or
family/work situations. We have all shared in and
learned from these discussions, even when the
patient is not directly known to all present.
The latter part of the meeting allows time for
related clinical issues and has included:
development of shared protocols such as
Surgical Voice Restoration procedures
compiling a useful contacts directory (numbers
for radiotherapists, dietitians and so on)
feedback from courses and special interest
groups attended
literature reviews
management issues such as staffing changes
within the multidisciplinary team, and implications
for us as speech and language therapists
funding surgical voice restoration equipment
and communication aids
T
Centralisation of the
most specialised acute
health services benefits
clients but presents
communication
challenges for all staff.
Carol Harris and
colleagues addressed this
through a clinical liaison
group - and found some
unexpected further
benefits. Although they
focus on head and neck
cancer, the concept is as
relevant to other areas
of speech and language
therapy practice.
Ahead-and-ne
of the
f
Rapid Access
and
Combined Cllinics
Radiotherapy Surgery
Speech and
language therapy
Oxford
Local speech and
language therapy teams
Clinical
Liaison Group
Oxfordshire Wiltshire
Buckinghamshire Berkshire
Figure 1 Service structure and interfaces around the clinical liaison group
discussion of other service developments within
the head and neck service.
The interface with service managers is developing
all the time. As specialist clinicans, we contribute
to management issues, and can focus on logistical
management from a clinical, grass roots perspective.
It is useful to have one response from across several
locations which we can then feed back to higher
levels of management such as the Four Counties
Cancer Network.
Communication is now much more effective
because
we all have a better understanding of each
speech and language therapy setting and their
constraints and possibilities, so can quickly
troubleshoot and take opportunities as they arise
there has been an opportunity to develop
protocols and pathways that work, which are
firmly based on patient and clinical needs
as a team we know each other beyond a name
at the end of the phone, and have developed a
supportive forum for peer supervision in a
specialist area of work.
Allocating specific time to discuss particular cases
with a peer group is something many therapists
comment would be helpful. This includes those
with a lot of experience as well as those newer to
an area of work. From our experience, we advo-
cate that formally establishing a clinical liaison
group is time well spent.
References
Calman, K. & Hine, D. (1994) A Policy Framework
for Commissioning Cancer Services. London:
Department of Health.
Department of Health (2000) The NHS Cancer Plan.
Edwards, D. (1997) Face to Face. The Kings Fund.
You can contact The Head and Neck Clinical
Liaison Group c/o Carol Harris, Speech and
Language Therapy, Radcliffe Infirmary,
Woodstock Road, Oxford 0X2 6HE.
SPEECH & LANGUAGE THERAPY IN PRACTICE AUTUMN 2001 13
in my experience
Do I communicate as effectively as
I should with speech and language
therapists in neighbouring areas?
Do I have sufficient peer support to
bolster my contribution to the
multidisciplinary team?
Are our care pathways clear and
firmly based on clients needs?
Reflections
neck
e
field
A mind odyssey
There is a need for open discussion by both relatives
and hospital staff about policy for resuscitating
patients with severe dementia; more than half of
mothers with postnatal depression have difficulties
interacting with their babies; and drawings of
school-aged children give clues to their mental state.
These issues were among the papers at a confer-
ence to mark the beginning of 2001 - a mind
odyssey, a year-long celebration of the arts, psychi-
atry and the mind organised by the Royal College of
Psychiatrists. Other events included the launch of
four comic books for 4-7 year olds which address
what it is like to be different. They have been
designed to provide a framework for people who
wish to support children to develop their strengths
and confidence, and to help other young people
understand what it is like to be different.
Reading Lights (set of 4 books and activity
poster) costs 12.
The Royal College of Psychiatrists, tel. 020 7235
2351, www.rcpsych.ac.uk
Strategy to
raise profile
Occupational therapists have been
successful in their aim to raise the
profile of the profession over the
past year.
The annual report of the British
Association of Occupational
Therapists describes how they
have targeted politicians, health
professionals, key decision-makers,
users, carers and the general
public to widen understanding
of how occupational therapists
can improve quality of life and
to ensure the concerns of staff
are heard and acted upon.
Methods include a parliamentary
lobbying strategy, a national
petition drive, developing
contacts with journalists, pro-
moting occupational therapy as
a career, expanding the website,
and producing a Publicity
Activity Book as a resource for
members organising events for
Occupational Therapy Day.
The College has also begun a
series of seminars aimed at
senior practitioners, occupational
therapy leaders and decision
makers with a focus on interme-
diate care.
The seminars involve participants
in addressing key national policy
issues and the opportunities and
challenges they present to the
profession.
BAOT, tel. 020 7357 6480,
www.cot.co.uk
Story time
Readers interested in using storytelling /
narrative in their work can contact the
Society for Storytelling for information and
to share ideas.
Started in 1993, the Society has specific
aims to promote, provide information
about and educate the public in the art of
oral storytelling, and produces a magazine,
Storylines. Facts and Fiction is another sto-
rytelling publication. Speech and language
therapist Sue Doncaster, a director of the
Society, is keen to set up a Special Interest
Group.
Society for Storytelling, PO Box 2344,
Reading RG6 6FG, tel. 0118 935 1381,
www.sfs.org.uk
Facts and Fiction, 190 Burton Road, Derby
DE1 1TQ, e-mail steelcarpet@lineone.net
Sue Doncaster, No. 1 Hibberd Road,
Malin Bridge, Sheffield, tel. 0114 233 1018,
e-mail suzie@smdoncaster.freeserve.co.uk.
Stammering changes
A change in its Constitution has enabled the British Stammering
Association to clarify its role in education and training.
Now a charitable company, the Association has widened its
objectives. In addition to the relief of people whose lives are
affected by stammering, it has a second charitable object, to
advance the education and training of the public in all matters
relating to stammering.
The Association is hoping it can attract more people as trustees, as
they will no longer be personally financially liable for its activities.
Although the distinction between members who stammer or have a
stammering child and those who do not has now been abolished, the
board will continue to have in the majority members who stammer.
BSA, tel. 020 8983 1003, Helpline 0845 603 2001, www.stammering.org
Brain injury developments
The support group for people affected by encephalitis has wel-
comed various government initiatives on brain injury.
A National Service Framework for Long Term Conditions is
planned, with a particular focus on the needs of people with neu-
rological conditions and brain and spinal injury. The Encephalitis
Support Group has been lobbying for this, and hopes it will look
at providing a clear patient pathway for treatment and ongoing
management. Although it is an initiative for England, the group
believes it will help campaigning work for similar frameworks
elsewhere in the UK.
Findings of a Health Select Committee short inquiry at the House
of Commons into brain injury services focused mainly on head
injury but will also have implications for encephalitis sufferers. They
include recommendations on improving the understanding of
brain injury among disability living allowance assessors and GPs.
The value of working collaboratively with other charities has
been demonstrated by the positive government reaction to a third
initiative involving the Encephalitis Support Group. The Childrens
Acquired Brain Injury Group has been given a grant to produce
information for teachers and others in education, along with a
commitment to consider the inclusion of information on acquired
brain injury in new guidance on the education of sick children.
Encephalitis Support Group, tel. 01653 692 583; helpline 01653
699 599, www.esg.org.uk.
news extra. . . news extra. . . news extra. .
priorities
SPEECH & LANGUAGE THERAPY IN PRACTICE AUTUMN 2001 14
Desperately
seeking
consensus!
he speech and language therapy profes-
sion finds itself attempting to provide val-
idation of therapy interventions, both to
adhere to the political agenda and to
deliver therapy when resources are limit-
ed. Within this context, I was asked to devise a set
of guidelines upon which to base decision making
with one particular client group: school aged chil-
dren who have learning difficulties and who are
educated within mainstream schools. We are
piloting the resulting prioritisation system (see
figure 1), but the survey and background research
described here highlight some important areas of
agreement among experts and the need for fur-
ther investigation into good practice.
The UK governments clinical governance initia-
tives have resulted in speech and language thera-
pists attempting to relate grass roots practice to
the few studies of efficacy into therapy interven-
tions with paediatric caseloads. For example, Law
et al (1998) carried out a systematic review of
therapy interventions, and were able to make
some conclusions for a limited number of client
groups, in certain contexts. They found interven-
tion for primary speech and language delay
(phonology, expressive language, receptive lan-
guage and phoneme awareness) was effective as
measured on standardised tests.
However, there is concern about the application
of certain methodologies to speech and language
therapy. The above review was unable to demon-
strate the effects of parental compliance and
cooperation, vital considerations for the practising
therapist. Van der Gaag (2000) says managers and
clinicians feel under increasing pressure to deliver
evidence which they do not have. Mobley (2000)
asserts that, Therapists intuition is based on tacit
knowledge acquired through experience and this is
difficult to quantify. Investigations into practice
must be appropriate if they are to be useful.
For a profession which delivers therapy to children
in many different contexts - even within specialties
- and with as many potential variables as there are
clients, the process of investigating efficacy can be
problematic. Although considerations of clinical
effectiveness should not automatically be linked to
resources, many practising therapists are under
pressure to demonstrate efficiency as well as effica-
cy, and constraints have prompted many depart-
ments to attempt prioritisation. McCartney (2000)
argues, prioritisation measures are being used to
restrict service delivery to schools before effective-
ness studies have been carried out.
Some therapists have attempted to reorganise ser-
vice delivery to take account of the fact that need
often outstrips supply (for example Portch, 1999;
Stainton-Ellis, 1998). The restriction of services may
be another barrier to collaborative practice as ther-
apists attempt to juggle caseload responsibilities
with team commitments. For example, McCartney
(1999) describes one system to prioritise therapy ser-
vices for children in education settings (Luscombe
and Shaw, 1996) as exemplary practice in health
service terms, but goes on to outline how it com-
The pilot prioritisation system devised by
Joanna Manz for mainstream school chil-
dren who have learning difficulties is based
on the opinions of experts in the field.
While the development process had its
imperfections, there are lessons for
everyone in a profession which must
deliver therapy that works.
you want to
deveop gudenes
show ecacy and
ecency
take an ethca approach
Read this
T
SPEECH & LANGUAGE THERAPY IN PRACTICE AUTUMN 2001 15
priorities
promised good collaborative practice between
speech and language therapists and education staff.
The Malcolmess Care Aims Model (1999) directly
addresses clinical governance and utilises aspects
such as enabling and anticipatory care.
Outcome depends very much upon the rationale
behind the intervention, although it could be
argued that multi-outcome is discounted.
Consensual rationing
Encouragingly, there is an acknowledgment that, if
there is not the empirical data on which to base
practice, opinion from experienced clinicians,
along with the views of associated professionals,
inform guideline statements to assist and define
the delivery of care in the most appropriate way,
(RCSLT, 1998). Acceptance of this as a means of
facilitating consensual rationing is in line with cur-
rent trends towards local priority setting. During a
conference (1998) which looked at prioritisation in
wider healthcare terms, Mullen justified the
process of local citizens juries as a way of estab-
lishing healthcare priorities, and Dickenson argued
that, even where there was research evidence upon
which to base resource allocation, practitioners were
still faced with making hard choices.
There are ethical issues around such decision
making. Therapists are part of society, and our
attitudes to disability are important when making
decisions about type and quantity of therapeutic
intervention. These decisions, based upon assess-
ment, raise fundamental ethical issues for chil-
dren who have, sub-average intellectual func-
tioning (I.Q. around 70) existing concurrently with
deficits in adaptive behaviour, (Dockrell & Henry,
1993). It is clearly not appropriate to speak in
terms of curative therapy. Therapy is expected to
take account of the clients strengths as well as
needs and building an environment that is con-
ducive to good communication is particularly sig-
nificant for this client group (RCSLT, 1996).
Tetzchner & Jensen (1999) assert that society has
a moral duty to reconsider its views of people
who have disabilities. Only through experience,
and seeing people with a disability as individuals
who are as different as all others, is it possible to
obtain an authentic impression of their situa-
tion. In their paper on peer-relationships,
Roberts & Smith (1999) describe how non-dis-
abled pupils attitudes affect the quantity and
quality of interaction which takes place in schools,
between themselves and their disabled peers. The
disability rights movement has attempted to
change attitudes, and there is a move towards see-
ing disability as the way society views its disabled
population rather than the original disabling
condition. Cunningham & Sloper (1985)
describe this as primary and secondary handicap,
the former being the individuals sensory or cog-
nitive disability, and the latter the environmental
aspects for the child. Much of the literature on
inclusion in schools focuses upon staff attitudes as
positive or negative influences on the inclusion
process. Carrington (1999) in particular describes
Figure 1 - Prioritisation system
RSEN prioritisation: guidance notes
Zero scores: It is important that each parameter has a zero score, as a particular one may have
no relevance to a pupil (eg. AAC) but could still influence the total by scoring a single point.
Ceiling scores: Following discussion with experienced therapists, the following seemed
appropriate:
24 or over = high priority
20-24 = bordeline
below 20 = low priority
However, each case is prioritised on its own merit therefore, even if a pupil scores low, the
therapist may feel they warrant some type of intervention (eg. indirect input). There is little
evidence to say definitively that intervention for pupils with learning difficulties is not effective,
even if it only maintains skills levels. Therefore the therapist has discretion to keep a case open.
Pupils with autism spectrum disorder / emotional difficulties: It could be argued by experts in
these areas that the form is not suitable for these pupils. The original research did not
specifically address this diagnostic category, although learning difficulties may be part of the
condition for some children. The parameters of motivation and readiness to change may
be difficult for therapists to consider for these pupils, whose interaction may fluctuate as an
integral part of their disorder.
Language in line with developmental age: If therapists feel this is the case, then the
score is zero. If there is a significant discrepancy, then they may place the score between 1
and 4. If a pupil has a severe learning difficulty, it is likely that they will have a severe
language disorder. However, if it is in line with developmental age, they may not be a candidate
for input. Therefore severity does not automatically prioritise the pupil. In the original
research, severity as a parameter did not rate highly. However, this is a local system,
responding to local demographics. It is acknowledged that some speech and language therapy
departments may have therapists who specialise in the clinical area of severe learning difficulties,
and they would find this position unacceptable.
AAC: A child may use only a small number of signs / symbols, but have a high frequency use.
Such a pupil should score highly, as the therapists should maintain involvement to assist
functional use. A low score would indicate a low level of need for the system.
RSEN PRIORITISATION
PARAMETERS LOW HIGH
Motivation 0 1 2 3 4
Readiness to change 0 1 2 3 4
Carer motivation 0 1 2 3 4
Carer motivation 0 1 2 3 4
Team support 0 1 2 3 4
Use of AAC system 0 1 2 3 4
Environmental change 0 1 2 3 4
Severity 0 1 2 3 4
Language 0 1 2 3 4
YES NO
AUTOMATIC PRIORITIES?
Assess and advise
Dysphagia
Consistent change as recorded on standardised tests
Dysfluency (access to generic therapists)
SCORE:..................
COMMENTS:
(To assist with therapy)
(To retain therapy contact)
(teaching/SLA/SFL)
(1 = low need, 4 = high need)
(of language delay / disorder)
(In line with developmental
age)

Table 2 - Top 3 parameters; all locations

Table 3 - Top 3 parameters; special school
Table 5 - Top 3 parameters; primary schools
Table 4 - Top 3 parameters; unit
priorities
SPEECH & LANGUAGE THERAPY IN PRACTICE AUTUMN 2001 16
how a school environment can be seen as an
organisation in the community and, as such,
will hold a view about academic success and fail-
ure and may lead to differential treatments of
particular individuals.
Political and ethical
In developing prioritisation guidelines - particularly
a client-specific system - it is clearly important,
then, to adhere to the political as well as the eth-
ical agenda. Is there consensus among therapists
who specialise in working with such children on
the factors determining intervention? I carried
out an audit of therapists in Scotland to find out,
with the parameters chosen to reflect current
ideas from the literature on prioritisation. These
include age, motivation (readiness to change)
techniques specific to speech and language thera-
py and severity (McCartney, 2000). In addition, the
parameters of behaviour disturbance, historical
issues (as some special provisions have just always
had speech and language therapy allocated),
pragmatics and dysphagia were added, as they
are relevant to this client group in particular. It
was also important to include the cooperation not
only of carers, but also of staff in education, given
the extensive coverage in the literature on collab-
oration (Wright & Kersner, 1999; Reid et al, 1996).
The audit took the form of a survey of experts
in the field who could provide views based upon
clinical practice. I felt that a good determiner
would be that a therapist should be working with
this population for 50 per cent of their time. To
access as many practising therapists as possible,
the speech and language therapy managers were
contacted. This was intended to be a discrete sample,
but it was difficult to get accurate information
regarding areas of clinical responsibility, and some
therapists missed the deadline for returns as the
questionnaire reached them through a tortuous
route. For smaller studies such as this, clearer infor-
mation about structures within speech and lan-
guage therapy would make it easier to gather data.
In total 42 questionnaires were returned. One of
these was blank, as the therapist did not spend 50
per cent of her time with children with learning dif-
ficulties, despite being the lead clinician. The rural
nature of the location resulted in this anomaly.
Seventy eight per cent of respondents ranked
the parameters: of those who did not, only two
gave reasons. These therapists felt the exercise
was inappropriate; as one commented, All chil-
dren with learning difficulties have equal access
to the speech and language therapy service. A
further two therapists who did rank the parame-
ters commented they were doing so under duress.
Table 1 shows a breakdown of the locations
where respondents worked. In addition, 19.5 per
cent of therapists reported working in three or
more locations, which may be considered high for
specialist therapists. The analysis does not show
any great discrepancy between the number of
therapists working in any particular location,
except for the lack of input at secondary level,
which has been reported anecdotally for some
time by therapists, education staff and clients.
Excellent practice
Of the respondents, 46.3 per cent reported that
they have a policy for this client group, but only
one sent a copy for information. Only two thera-
pists reported using the guidelines in
Communication Quality, although of course
there could have been more who did not specify.
In addition, 34.1 per cent specifically stated they
did not have a departmental policy. These
responses were all from experts in the field,
and it may be assumed there is much excellent
practice going on in this area of work, but a sub-
stantial number of staff have not explicitly record-
ed that good practice in the form of departmen-
tal policies, which could form the basis of wider
guidelines by consensus.
Therapists were asked to rate 15 parameters in
order of importance to their practice. There are
certain methodological problems with this type of
multi-answer question. However, I decided ranking
could give an indication of the most important
parameter, if it occurred in one of the top three
positions. The analysis therefore took the form of
stating the number of times a therapist rated these
as 1, 2 or 3. Any further analysis would be
unwieldy, and not really yield any helpful informa-
tion. Besides, the lack of occurrence of a particular
parameter in the top 3 would provide information,
in terms of its importance to therapists.
Table 2 shows a breakdown for all respondents
of the number of times a parameter appeared in
the top 3. There is consensus regarding the
importance of motivation; support of education
staff; assessment; motivation of the carer; and the
use of AAC systems. Dysphagia also was rated
consistently highly. One therapist commented
that it should stand alone as a treatment. It is
known that many Trusts have speech and lan-
guage therapists working predominantly with
eating and drinking difficulties, so it could be
argued that this was an inappropriate addition to
the list. However, in other cases, therapists have
to prioritise referrals for dysphagia in the context
of a varied and large caseload; for them, dysphagia
is a deciding factor for intervention. Severity of
learning difficulty, pragmatics, age and behaviour
disturbance were not rated highly by therapists
when deciding upon intervention.
Tables 3, 4 and 5 show the top 3 parameters by
location, to detect differences between ratings
depending upon where the therapists worked.
Therapists working in special school locations fol-
lowed the pattern for the whole sample, while
those in unit locations had more evenly spread dis-
tribution. Collaboration is rated as important most
often, with motivation, both for the client and the
carer, having less importance in relative terms.
Only two therapists reported a single type of
input. A high proportion (90.2 per cent) reported
working with education staff, and 56 per cent
worked regularly with parents. Only nine thera-
Table 1 - Location
Speech and language Number Percentage
therapists working
in a:
single location 20 48.8%
special school 18 43.9%
special school only 7 17.1%
unit 19 46.3%
unit only 7 17.1%
secondary school 7 17.1%
secondary school only 0 0%
health board location 4 9.8%
Key to parameters:
a = motivation of pupil
b = motivation of carer
c = childs use of AAC system
d = presence of behaviour difficulty
e = absence of behaviour difficulty
f = pragmatics
g = age
h = involvement of other professions
allied to medicine services
i = severe learning difficulties
j = moderate learning difficulties
k = mild learning difficulties
l = supportive education staff
m = dysphagia
n = historical
o = assessment

SPEECH & LANGUAGE THERAPY IN PRACTICE AUTUMN 2001 17

priorities
pists (22 per cent) were able to see clients more
than once weekly although, given the high col-
laboration, it may be that programmes were con-
tinued in the therapists absence. The survey did
not ask about the use of assistants. Approximately
half (53 per cent) reported working in groups,
and 26 per cent of respondents said they worked
alone for some of the time.
Starting point
The survey presents some useful information.
However there were some difficulties with its for-
mat, as well as some limitations. There was a lack
of sensitivity for certain issues; for example, it did
not allow for analysis of caseload by location. The
issues of inclusion were not addressed, but may
well have influenced service delivery. The multi-
choice aspect of rating the parameters may have
resulted in a lack of clarity for some therapists.
Similarly, rate of return was impossible to ascer-
tain because of the difficulty accessing the appro-
priate staff. Nonetheless, the views of 41 experts
are still extremely useful as a starting point, and
more in-depth information on good practice can
be collated from the returns.
In terms of the parameters, motivation would
appear to be important for therapists. It can be
seen as the active participation of the child in
the therapy process (RCSLT, 1996). The notion of a
childs desire to change their behaviour being
considered vital, even where there is a learning
difficulty, is in line with the idea that each indi-
vidual is as different as all others, and the individ-
uals response to input has to be assessed. Simply
because a child has a disability, they do not auto-
matically need therapy. Carer motivation is com-
plex. Many carers of children who have disabilities
feel the need to ensure access to therapy for long
periods of time, and the idea of withdrawal of a
service can be traumatic. In some instances the
views of the carer and the judgement of the ther-
apist can conflict. Stansfield & Hobden (1999)
describe one such case, and the ethical issues it
raised. The recommended break from therapy
was rejected by the parent, despite the child
being unmotivated. A compromise was reached,
involving continued input from speech and lan-
guage therapy, albeit at a reduced frequency. In
this case, motivation was an extremely important
aspect of the decision-making process.
Motivation can be said to include aspects of
behaviour which indicate a desire to interact with
others. Therapists are aware of the clinical impor-
tance of pragmatic aspects of communication, and
the need to ensure children use the language
forms they have most effectively. If these factors
are bound up with a readiness to change, then any
changes which are taking place within the commu-
nication environment are also vital considerations.
Such change may well be the catalyst for therapy
interventions to be useful. Given the very small num-
bers of therapists working at secondary level, where
significant life changes take place for the pupil, this
may be a further challenge to the profession.
Team approach
The importance of collaboration for therapists in
all locations confirms that grass roots practice is in
line with the literature. It is vital that the childs
needs are fully assessed by the team, and inter-
vention planned to maximise the effect of thera-
py; this is more likely to occur where there is a
strong team approach.
The fact that clients use of AAC systems and
assessment are highly rated is not surprising. It is
notable however that age and severity are not
considered highly important. This may be due to
the fact that therapists do find it useful to adhere
to developmental norms, but assess the need for
input for each child on the basis of current func-
tioning and communication context.
Motivation should be a significant factor for any
system of prioritisation, providing all aspects are
taken into account. For those who have learning
difficulties, motivation to communicate is as
important as motivation to change. Rogers-
Adkinson and Griffith (1999) discuss such issues
and remind us that, as a communicator, a child
must construct messages that take into account
the needs of others. Given the consensus regarding
motivation, recognition of pragmatic aspects of
communication is also important, and the highly
rated parameter of support from colleagues in
education would suggest that, where the therapist
can work within a strong team, outcomes may be
more easily achieved.
This survey has highlighted some important
areas of agreement, as well as the need for fur-
ther investigation into good practice with this
client group. The results have led to the piloting
of a system of local prioritisation which is being
monitored to assess its usefulness to the delivery
of services in Angus.
Joanna Manz, speech and language therapist, is
special needs co-ordinator in Angus for Tayside
Primary Care NHS Trust. This article is based on a
paper completed for the University of Strathclyde
as a workplace-based module. Address for corre-
spondence: Abbey Health Centre, East Abbey
Street, Arbroath.
References
Carrington, S. (1999) Inclusion needs a different
school culture. International Journal of Inclusive
Education 3 (3).
Cunningham, C. & Sloper, P. (1985) in Craft, M. &
Bicknell, J. (eds) Mental Handicap, a multi-discipli-
nary approach. London Bailliere Tindall.
Law, J., Boyle, J., Harris, F, Harkness, A. & Nye, C.
(1998) Screening for Speech and Language Delay:
a systematic review of the literature. Health
Technology Assessment 2 (9).
Dickenson, D.L. (1998) proceedings: 2nd
International Conference on Priorities in
Healthcare. University of Birmingham. Kings Fund.
Dockrell, J. & Henry, C. (1993) in Beech, J. &
Harding, L. (eds) Assessment in Speech and
Language Therapy. Routledge.
Luscombe, M. & Shaw, L. (1996) Agreeing priorities
for a school service. RCSLT Bulletin (December).
McCartney, E. (1999) Speech/Language Therapists
and Teachers Working Together. A Systems
Approach to Collaboration. Whurr.
McCartney, E. (2000) Include Us Out. Speech and
Language Therapists Prioritisation in Mainstream
Schools. Child Language Teaching and Therapy
(June).
Malcomess, K. (1999) Delivering clinical governance
in speech and language therapy. Unpublished.
Mobley, P. (2000) Research Renaissance. RCSLT
Bulletin (April).
Mullen, P. (1998) proceedings: 2nd International
Conference on Priorities in Healthcare. University
of Birmingham. Kings Fund.
Portch, A. (1999) Rationalising the waiting list.
RCSLT Bulletin (January).
Reid, J., Millar, S., Tait, L., Donaldson, M.L., Dean,
E., Thomson, G. & Grieve, R. (1996) Pupils with
Special Educational Needs: The role of Speech and
Language Therapists. Interchange 43 SOEID.
Roberts, C. & Smith, P. (1999) Attitudes and
Behaviour of Children Towards Peers with
Disabilities. International Journal of Disability,
Development and Education 46 (1).
Rodgers-Adkinson, D.L. & Griffith, P. (Eds) (1999)
Communication Disorders and Children with
Psychiatric and Behavioural Disorders. San Diego:
Singular.
Royal College of Speech & Language Therapists
(1998) Clinical Guidelines by Consensus for Speech
and Language Therapists. RCSLT.
Royal College of Speech & Language Therapists
(1996) Communicating Quality 2. RCSLT.
Stainton-Ellis, R. (1998) Equity in Special Schools.
RCSLT Bulletin (January).
Stansfield, J. & Hobden, C. (1999) Whose right?
Whos right? Speech & Language Therapy in
Practice (Winter).
Tetzchner, S. & Jensen, K. (1999) Interacting with
people who have Severe Communication
Problems: Ethical considerations. International
Journal of Disability, Development and Education
46 (4).
van der Gaag, A. (2000) Post modernising the evi-
dence. RCSLT Bulletin (June).
Wright, J. & Kersner, M. (1999) Teachers and
Speech and Language Therapists working with
Children with Physical Disabilities: Implications for
Inclusive Education. BJSE Nasen 26 (4).
Do I reassess priority for therapy
when a clients environment
changes?
Do I take time to turn practice into
policy which could form the basis of
guidelines?
Do I make it clear to others when
the aim of therapy is not curative?
Reflections
service development
SPEECH & LANGUAGE THERAPY IN PRACTICE AUTUMN 2001 18
A simple
audit,
a major
change
n 1996 an estimate was made of the cost of
replacing tracheo-oesophageal valves in
laryngectomy patients, as this is met by
speech and language therapy although
there is no designated budget. At that time
all patients were fitted with a Blom-Singer valve,
and the average number of laryngectomees on
the annual caseload was 20. Since August 1996,
laryngectomees have been fitted with Provox
valves, and the number of patients - and there-
fore the number of valve changes - is increasing.
Although patients are encouraged to contact
the speech and language therapy department
when a valve change is indicated, some attend
without an appointment. When patient numbers
were smaller these requests could usually be
accommodated but, with increased numbers, this
is not always possible.
When patients contact the department to
arrange an appointment, a valve change is need-
ed within a few days. If there is a recognised
problem in valve fitting, the speech and language
therapist contacts the ENT surgeon to arrange a
suitable time for both to see the patient. Where
a patient attends the therapist for a pre-arranged
appointment, and a valve-fitting problem arises,
the therapist contacts the ENT surgeon and/or takes
the patient to the ENT out-patient department.
Neither local anaesthetic spray nor suctioning
equipment is available in the speech and lan-
guage therapy department. At a busy ENT clinic,
however, rooms are not always readily available
and, on occasion, there is no ENT clinic, and no
nursing or medical staff immediately available.
Given the difficulties encountered, I decided to
audit the Provox valve changing service provided
by the speech and language therapy department
at Gartnavel General Hospital, and to identify the
nature and frequency of these problems. We
wondered if a change in the system could help us
support patients in practices that would reduce
their need for frequent valve changes and pro-
vide them with a better service. As there are few
problems with changing Blom-Singer valves in
eight longstanding cases, these are not included.
Retrospective
All patients with a Provox valve on the speech and
language therapy caseload between August 1999
and July 2000 were included, and there were no
exclusion criteria. I carried out a retrospective
examination of all their case notes, recording:
name
absence/presence of conversational voice
(table 1)
number of valve changes in total per patient
by member of staff responsible since the
laryngectomy operation (table 2) and from
August 1999 to July 2000 (table 3)
nature and frequency of difficulties encountered.
you are
pannng an audt
ttng emergences n
when you can
dependent on others to
mprove servces
Read this
l
Frustrated by the ad
hoc nature of
tracheo-oesophageal
valve changing for
laryngectomees,
Janice Dey carried out
a simple audit of the
service. This has led
directly to the
establishment of a
specific Valve Clinic
with designated ENT
and speech and
language therapy
staffing.
SPEECH & LANGUAGE THERAPY IN PRACTICE AUTUMN 2001 19
service development
There were 15 patients with Provox valves on the
caseload between August 1999 and July 2000, of
whom all except one achieved conversational voice.
The majority of patients had between one and
three valve changes in the year. On average,
patients required two valve changes per year with
almost three-quarters of these having been carried
out by a speech and language therapist.
Patients were grouped under five identified cat-
egories for the nature and frequency of difficulties
encountered:
- Category A: no difficulties encountered.
- Category B: slight difficulties encountered;
for example,
more than one attempt to fit valve
tracheal flange required to be extracted from
puncture site
patient very tense
coughing.
- Category C: moderate difficulties encountered;
such as
required use of suctioning / local anaesthetic.
- Category D: severe difficulties encoun-
tered; for example,
difficult to insert valve through both tracheal
and oesophageal walls
excessive secretions with coughing/vomiting
valve coughed out.
- Category UNKNOWN as no records available.
Moderate or severe difficulties were encoun-
tered in over half of valve changes (table 4) where
suctioning and/or local anaesthetic were required,
and/or there was difficulty inserting the valve suc-
cessfully. Severe difficulties were encountered in
26 per cent of valve changes, requiring the ser-
vices of an ENT surgeon.
More time needed
With increasing numbers of laryngectomy
patients, it was clear that more time needed to be
allocated to changing valves. The speech and lan-
guage therapy rooms are carpeted treatment
rooms within the Rehabilitation Department,
with neither nursing nor medical staff available,
nor appropriate clinical facilities for changing
valves, and are therefore not suitable should
problems arise.
For the service to be more efficient and effective,
I recommended:
1. There should be a regular, designated time for
changing Provox valves, where nursing and medical
staff are available if required, in suitable clinic rooms
with available instrumentation and equipment.
2. All patients with a Provox valve should be
informed of the change to the service, and of the
designated times for valves to be changed.
3. All patients with a Provox valve should be
issued with a Provox plug and instructed in its use.
These should be used on a temporary basis when
eating and drinking when a valve is leaking, until
the valve can be changed.
On receipt of the audit report, the ENT
Consultant involved in laryngectomy decided to
establish a Valve Clinic, and allocated an ENT reg-
istrar to be there with the speech and language
therapist. We are continuing to keep a note of
the category of valve change at each visit, and
plan to re-audit the service in due course.
Janice Dey is a specialist speech and language
therapist at Gartnavel General Hospital for North
Glasgow University Hospitals NHS Trust.
A aryngectomy operaton used to mean
reyng on the deveopment o oesophagea
speech and / or the use o an artca
arynx or verba communcaton. The
advent o vaves has changed ths pcture
competey, and most peope wth a
aryngectomy can now get a very good
quaty o voce easy and consstenty.
Speech and anguage therapy now ocuses
on the technque o usng the vave
(ocatng the stoma, choce o nger,
coordnaton wth vocng) as we as the
tradtona pre-operatve counseng and
postoperatve supportve roe. However,
or varous reasons, probems do arse
wth vaves, whch mean they have to be
changed at unpredctabe ntervas.
Athough n most cases ths can be done
by a speech and anguage therapst wth
tranng, the servces o medca sta are
st needed ary requenty, and t s not
aways cear at the outset o the vave
change how compex the procedure w be.
atch-up
Table 1 - absence / presence of conversational voice
Number Percentage
of patients
Conversational
voice present 14 93.3%
Conversational
voice absent 1 6.7%
TOTAL 15
Table 3 - Number of valve changes per patient,
August 1999 to July 2000
Number of Number of Total valve
patients valve changes changes
August 1999 -
July 2000
1 0 0
4 1 4
5 2 10
4 3 12
1 5 5
15 31
Table 4 - Valve changes by category
Category Valve changes Valve changes %
by speech and by ENT
language Surgeon
therapist
A 14 0 26%
B 10 0 18%
C 7 0 13%
D 8 14 41%
Unknown 0 1 2%
TOTAL 39 15
Table 2 - Number of valve changes since
laryngectomy operation
Total number Percentage
of changes
Speech &
Language
Therapist 39 72%
ENT Surgeon 15 28%
TOTAL 54
Do I recognise the potential of
data in case notes for facilitating
service improvements?
Do I make enough use of evidence
when asking for changes to be
made?
Do I use audit to develop better
multidisciplinary working?
Reflections
collaboration
SPEECH & LANGUAGE THERAPY IN PRACTICE AUTUMN 2001 20
Behavioural
change the
multi-agency
way
Even if health, education and social services
are highly integrated, some children will need
more specific multi-agency input. Sarah Hulme
and Barbara Sampson report on the ground-
breaking work of a team which is tackling the
needs of children with significant behavioural
and language difficulties in nursery settings by
empowering staff and parents.
he complex relationship between behav-
ioural/emotional difficulties and speech
and language difficulties (often com-
pounded by children having English as an
additional language) means that nursery
staff are often unclear about handling these chil-
dren, where to refer them and at what stage to
involve outside agencies. In Camden, an Early
Years Intervention Team was established in April
1999 as a multi-agency resource providing assess-
ment, diagnosis and management to preschool
children presenting with language and associated
behaviour difficulties who were attending
Camdens Early Years Centres. The aim of the team
is to assist staff at a very early stage to assess chil-
drens needs precisely and to then work alongside
staff to meet the identified needs.
The team was set up initially in response to
needs that had been identified within these local
education authority early years centres. In 1998,
60 per cent of places in the centres were for chil-
dren in need and were allocated in conjunction
with the social services department. These needs
covered a broad spectrum, with children requiring
support educationally, linguistically, socially and
emotionally and often for their challenging
behaviour. There was a clear need to support
these children before they entered school, and
also to support the staff working with them.
With the setting up of Early Years Development
and Childcare Partnerships, the expansion of the
you want to
bud a mut-agency
team
empower sta and
carers
promote ncuson
Read this
T
s
e
e

w
w
w
.
s
p
e
e
c
h
m
a
g
.
c
o
m
in
s
id
e
fr
o
n
t
c
o
v
e
r
Case Example: Granit (1st language Albanian)
SPEECH & LANGUAGE THERAPY IN PRACTICE AUTUMN 2001 21
collaboration
or sensory difficulties was provided by the early
years speech and language therapy service - a clin-
ic based service. This service offers packages of
care based on parent/child interaction therapy
(Kelman & Schneider, 1994), the philosophy being
that the childs environment needs to adapt to
meet their needs, and that this
environment is the parent. The
philosophy assumes that lan-
guage development is usually a
robust process which develops
regardless of the quality of the
interactive environment.
However, where a childs lan-
guage is delayed or disordered
in nature, their communication
skills can be developed by mod-
ifying the interaction style
which the adult uses. This
premise is supported in the lit-
erature by evidence for the positive effect of
responsive language input by mothers on the
childs language development (Girolametto et al,
1999). For example, following the childs lead
during play will develop their attention and lis-
tening skills.
Nursery staff are an integral part of clinic based
therapy, and are invited to be involved in the fol-
lowing ways;
1. Interventions related to a specific child
participate in adult/child interaction sessions
January 1999: 2;03 years
Initial assessment revealed mild-moderate delays in all
areas. Assessment hampered by poor attention and
listening.
May 1999: 2;07 years
Review:- markedly reduced attention and listening;
repetitive exploratory play and unable to occupy self;
expressively using jargon mixed with some real words in
Albanian. Unable to participate with informal assessment.
Parents reported frequent episodes of throwing/ screaming
at home. Advised, and referred to clinical psychology for
ongoing support.
July 1999: 2;09 years
Attended parent-child interaction therapy (4 sessions) in
local health centre. Aims included following Granits lead
and allowing him to initiate the communication. Granit
developed his attention to play, and was able to tolerate
some adult direction in play. Improvement in play skills -
relational and early symbolic sequences emerged.
November 1999: 3;01 years.
Started nursery. Staff identified limited use of eye contact
in communication, frequent tantrums, attention seeking
behaviours and lack of response to his name.
December 1999: 3;02 years.
Speech and language therapy review:- immature attention
and listening; play skills immature - repetitive exploratory;
verbal comprehension at single word level; expressive
language - some single words, with jargon; disordered
features of jargon; frequent echolalia; reduced eye contact
in communication. Similar concerns about abilities noted
by parents.
February / March 2000: 3;04 years.
Participated in adult-child interaction package (3 sessions)
with key worker at nursery, run jointly by speech and
language therapist and teacher. Aims for key worker
included:- following Granits lead in play; listening to his
attempts at communication; and providing a simple
commentary on his actions, in response to his initiations.
Simultaneously, Early Years Intervention Team teacher
modelled simple language activities for staff at circle time.
Feedback from key worker included increased initiation of
communication; able to follow simple directions; using
single words; playing alongside peers; reduction in attention-
seeking behaviour and tantrums.
March / April 2000: 3;05 years
Attended 2 courses of language groups (each 6 sessions)
at local health centre. Aims included to develop attention
& listening and turn taking, and social interaction. No
difficulties with behaviour management.
September 2000: 3;11 years
Started attending preschool language unit. Language
continues to be delayed in both Albanian and English,
and disordered in nature. Able to benefit from the groups
(3 times weekly for two and a half hours) - no further dif-
ficulties with behaviour management.
December 2000: 4;02 years
Speech and language therapy review:- attention and
listening mildly delayed; verbal comprehension in English
3 word level consistent - achieves some at 4 word level;
expressive language 2 word level; disordered features
remain - telegrammatic speech, word-finding difficulties,
perseverates; improved interaction with adults and
sometimes peer group; no disruptive behaviour in
nursery or language unit.
observe language group sessions (modelling of
strategies by speech and language therapist)
provision of IEP (Individual Education Plan) targets
specific to the child
2. Training based interventions
rolling programme of adult/child interaction
in-service training (INSET) days
rolling programme of adult/child interaction
video tutorial sessions (Cummins & Hulme, 1997).
Despite this high level of integration of services it
had become apparent that, whilst this service was
appropriate for the majority of referrals, there
was a small number of children for whom a multi-
agency nursery-based approach was needed.
Working together
The team works very closely together and all work
is developed jointly. When referrals or requests
for training or parent support are received, the
team decides together on which members will
respond. As well as simplifying the process for the
providers of nursery education, this approach also
enables the team to develop their own skills and
learn from each other.
The team works with children from 2-5 years of age
presenting with more than one of the following:
behavioural/emotional difficulties
difficulties in accessing the curriculum
language difficulties (not English as an
additional language)
at risk of developing more long-term special needs
work of the team across all preschool settings
became a major part of the strategy to support
children with special educational needs, to pro-
mote inclusion and raise levels of achievement
for all children. The team now works across all
under-5 provision named in Camdens Early Years
Development and Childcare Plan
other than maintained schools.
There are currently 9 local edu-
cation authority early years cen-
tres, 2 other local authority nurs-
ery centres, 26 voluntary
providers, 34 private providers
and 12 independent providers.
The team comprises two spe-
cialist teachers, each working 0.5
whole-time equivalent, one edu-
cational psychologist (0.4) and a
specialist speech and language
therapist (0.5), all of whom have
extensive experience of language/behaviour man-
agement. The team is managed by the deputy
head of the early years service who is a specialist
in working with young children who have English
as an additional language.
Philosophy
At the time the team was established, speech and
language therapy to preschool children in
Camden who presented with language impair-
ment in the absence of associated learning, motor
There was a clear
need to support
these children before
they entered school,
and also to support
the staff working
with them

collaboration
SPEECH & LANGUAGE THERAPY IN PRACTICE AUTUMN 2001 22
difficulties participating in nursery
activities as a result of family /
environmental change.
The team may work with any child
who is on the Code of Practice at
any stage from 1-3, or with any child
who is not on the Code of Practice
but who is raising concerns.
The team offers a range of pack-
ages of care which view either the
child or the nursery as the client:
1. Assessment
Assessment may include observation
of the child in the nursery setting,
discussion with parents, and assess-
ment of the key workers interaction
skills and childs response.
2. Intervention
The team can work indirectly, offering support
and advice to staff in developing programmes and
strategies which enable children with emotion-
al/behavioural/language difficulties to access the
curriculum more easily.
The team can also work directly with individuals,
pairs and groups of children for negotiated
amounts of time once the referral process has
been completed.
3. Training
Training can be offered centrally or in response to
the needs of individual providers and can focus on
general support for special educational needs or
on specific areas of concern.
4. Work with parents/carers
The development of work with parents/carers is
an important focus for the team. The work
includes parent drop-ins and surgeries, specific
training/support sessions and general advice. The
drop-ins were requested by parents and focus on
behaviour management and sleep difficulties.
They have had good take-up, and a lot of involve-
ment from the parents, including a group for whom
English is an additional language. Further work-
shops/surgeries have been requested on different
topics and repeated sessions for other settings.
5. Adult-child interaction
To develop the abilities of a particular child - and
to develop the key-workers skills in interacting
with that child - parent/child interaction therapy
has been adapted for use with adults in the nurs-
ery setting. The principles remain the same but,
instead of the parent, the child and his key work-
er participate in four adult/child interaction ses-
sions. Video playback is used to assist the key
worker to identify the strengths and weaknesses
of their interaction with that particular child, and
over the course of the sessions their interaction
style is adapted to meet the needs of the child.
This is done with reference to a list of the para-
meters, the self rating scale, which research has
shown to be important to consid-
er when interacting with a child
with language impairment.
(Cummins & Hulme, 1997). These
include following the childs lead
in play, and reducing the number
of questions asked.
Since this is a language based
intervention package and
requires a high degree of training
and experience to be used effec-
tively, this package is always man-
aged primarily by the speech and
language therapist on the team.
However, it is co-run by the
speech and language therapist
and specialist teacher, who pro-
vides strategies for managing
behaviour alongside the language development
strategies.
6. Nursery screening
This consists of a session at an individual nursery
where all members of the team are present. The
head of the nursery and/or the special edu-
cational needs co-ordinator, with key work-
ers, can bring to the session the names of
children who are causing concern. The chil-
drens needs can then be discussed and
action recommended.
Before any child can be discussed by the
team, permission must be given by the par-
ent/carer and the importance of working in
partnership with parents/carers as well as
staff is a central principle for the team.
Numbered referrals forms are sent out to
nursery staff for completion and signature
from parent/carer as soon as a request
about an individual child is received.
Completed forms are then discussed at a
referral meeting and team members allocated to
each child initially. Each child is reviewed regu-
larly, and whether support is ongoing or addi-
tional action needs to be taken is noted. Children
may be exited from the service for a variety of
reasons including:
current needs having been met and support
no longer needed
entry to school
referral to another agency because of more
complex or ongoing needs
parental request.
To date 51 referrals have been made to the
team and, of these, 24 have been exited; 20 to
schools, 1 referred to the educational psychology
service, 1 to a language unit within an early years
centre, 1 because of parental request and 1
because support was no longer needed within the
nursery.
Complementary
The Early Years Intervention Team is not a substi-
tute for clinic based parent focused intervention,
and it is not an alternative for children who fail to
attend the clinic. However, for children with lan-
guage impairment, the Early Years Intervention
Team has complemented and added to the speech
and language therapy services already offered.
Children have been able to transfer between the
Early Years Intervention Team and the clinic based
speech and language therapy service in order to
access packages of care as appropriate. The case
example (page 21) shows how a multi-agency and
flexible approach has been able to benefit chil-
dren.
The packages offered have served to develop
staff knowledge of language impairments and
appropriate management. This has impacted on
the efficacy of the speech and language therapy
service as a whole, both by increasing the number
and appropriateness of referrals to the clinic
based speech and language therapy service from
nursery centres, and by improving the existing
links between the agencies.
Having a member of the speech and language
therapy service working in direct collaboration
with education agencies has improved links as a
whole, and both health and education have ben-
efited from mutual
exchange of training,
which in turn impacts on
client care. There has been
some generalisation of
skills by nursery staff. One
of the main aims of the
team is to support staff in
working with all the chil-
dren, and training has been
given to some staff around
behaviour management
and communication as well
as direct work with individ-
ual children. The team
spends time discussing
strategies with staff as well as modelling strate-
gies in their direct work with the children. An
evaluation by London Universitys Institute of
Education (Siraj-Blatchford & McCallum, 2000)
commented on the skills gained by staff and
detailed how staff were using suggestions not
only with referred children but also generally
and/or with other children causing concern. The
very positive feedback from staff and parents
about the teams input is detailed in these
excerpts from the evaluation (Siraj-Blatchford &
McCallum, 2000):
The team observe a child in the setting and then
suggest strategies to the staff as well as modelling
the strategies with the child. In the evaluation,
staff commented on some of the strategies that
they had learned in this way -
describing unacceptable behaviour clearly to
the child responsible and the consequences of
that behaviour on others
remaining calm (in the face of bad behaviour)
giving children time to talk about their feelings
(after an incident ) and listening.
Parents have appreciated the importance given
parent/child
interaction
therapy has
been adapted
for use with
adults in the
nursery setting.

SPEECH & LANGUAGE THERAPY IN PRACTICE AUTUMN 2001 23

collaboration
Do I appreciate the benefits of
decision making as a team -
for the team and for me?
Do I make use of video
interaction approaches in my
work and for self-development?
Do I recognise the benefits to
our service of having staff
collaborating directly with
another agency?
Reflections
to their contributions and the support they have
received from team members. One parent talked
about a gradual change in her childs behaviour
due to the work of a team member and the childs
key worker:
A big change in his behaviour for the better. I
wanted to change my behaviour for the better.
Staff also talked about the importance of set-
ting boundaries for the children and the effect
that their own behaviour could have on the
childs behaviour. Staff have felt empowered by
input from the team both through training and
through modelling of strategies with children.
Comments include
You see them do things and you tend to copy
what they do: you see it happening and it
works
Im talking TO children now not AT them
Learned that reinforcing the positive was as
important as was playing down the negative.
Sarah Hulme is Principal Speech and Language
Therapist for The Early Years Service, based at
Hunter Street Health Centre, 8 Hunter Street,
London, and Barbara Sampson is manager of The
Early Years Intervention Team, based at The
Medburn Centre, 136 Chalton Street, London
NW1 1RX, tel. 020 7974 8007.
References
Cummins, C. & Hulme, S. (1997) Video - a reflec-
tive tool. Speech & Language Therapy in Practice
(Autumn).
Girolametto, L., Weitzman, E., Wiigs, M., & Steig-
Pearce, P. (1999) The relationship between mater-
nal language measures and language develop-
ment in toddlers with expressive vocabulary
delays. American Journal of Speech-Language
Pathology 8.
Kelman, E. & Schneider, C. (1994) Parent-child
interaction: an alternative approach to the man-
agement of childrens language difficulties. Child
Language Teaching & Therapy 10 (1).
Siraj-Blatchford, I. & McCallum, B. (2000) Camden
Early Years Intervention Team Evaluation.
University of London, Institute of Education.
E VE NT S
9-12 October, 2001
Johansen Sound Therapy Training
Course
With Dr Kjeld Johansen PhD
Covering theory, assessment and
implementation of this approach to
enhancing auditory processing as part of
an individualised therapy or teaching
programme.
Edinburgh, 250
Details: Camilla Leslie, 10 Kinsburgh Road,
Edinburgh EH12 6DZ, tel/fax 0131 337
5427, e-mail camillamleslie@hotmail.com
16 October, 2001
Afasic / Department for Education
Providing speech and language
therapy to children
For professionals, local government
administrators and policy-makers.
A free conference exploring the
experiences and good practice of
Standards Fund pilot projects.
Villa Park Conference Centre, Birmingham
Details: Carol Lingwood, tel. 01273 381009,
e-mail carol@lingwoods.demon.co.uk
16-17 October, 2001
Signalong
Communicating Choices conference
Day 1 - Encouraging children to express
themselves
Day 2 - Empowering adults to make and
express choices
Centre for Professional Development,
Oldham
90 per day / 150 for 2 days
tel. 01634 819915,
e-mail mkennard@signalong.org.uk
19 October, 2001
RNID Breaking the Sound Barrier
Focus is on disability in the 21st century.
Includes disability and deaf awareness training;
room for improvement (adapting the
environment); employment and training
village; interactive technology and learning
zone.
RNID Information Line, freephone 0808
808 0123, www. rnid.org.uk
23 October, 2001
Royal Hospital for Neuro-disability
Neuro-behavioural Rehabilitation of
Severe Brain Injury: Theory and Practice
Includes neuropsychiatry of challenging
behaviour in brain injury; symposium on the
rights and risks in severe brain injury; importance
of skills training in behaviour management.
150
Details: Lisa Reis, tel. 020 8780 4500 ext 5236
/ e-mail lreis@royal-neurol.demon.co.uk
FOR MORE EVENTS SEE INSIDE BACK PAGE
SMART move
The Sensory Modality Assessment and
Rehabilitation Technique (SMART), developed by
occupational therapists at the Royal Hospital for
Neuro-disability in Putney, London, is available for
purchase along with training courses in its use.
SMART kits are 300 + VAT. Two day training courses
are 200 per person. Contact Chloe Hayward, tel.
020 8780 4561, e-mail info@neuro-disability.org.uk
Books for professionals
A UK-based internet book company has launched a spe-
cialist arm for scientific, technical and medical profes-
sionals, aiming to deliver within 24 hours of ordering.
www.amazon.co.uk
Dementia help
Alzheimer Scotland - Action on Dementia has produced:
A Help Card for people with dementia who may
find themselves in need of assistance (for
example, dealing with money in a shop or on a
bus) or who may feel lost.
A leaflet for staff who work with the public and
may meet someone with dementia in the course
of their duties.
A guide to Creating dementia-friendly
communities.
Alzheimer Scotland - Action on Dementia, tel. 0131
243 1453, www.alzscot.org
Annie on CD
A computer simulated girl called Annie will soon
be showing Signalong in action.
A CD ROM will be available from the middle of
October demonstrating 155 signs along with
descriptions and a sign recognition game.
Details of Annies Signalong, tel. 01634 819915,
www.signalong.org.uk
Discussion forum
Australian Speech-Language Pathologist Caroline
Bowen has set up an e-mail discussion forum for
consumers, students and professionals.
http://members.tripod.com/Caroline_Bowen/disc1_
frm.htm.
AAC Connections
Three companies have merged activities to provide
a more integrated approach to electronic assistive
technology.
Connections combines the knowledge and service
support of Cambridge Adaptive Communication,
Possum and Gewa (UK) and can facilitate the control
of alternative and augmentative communication,
environmental control systems and environmental
control equipment from a single input switch.
Cambridge Adaptive Communication, tel. 01296
719736, www.cameleon-web.com
Inclusion on the web
A website on inclusion has been re-launched following
feedback from users.
http://inclusion.ngfl.gov.uk
resources..resources..resources..
The GOLD Programme
The high risk of dementia for people with Downs syndrome is one of the main concerns of the GOLD programme.
GOLD (Growing Older with Learning Disabilities) is a four-year project at the Foundation for People with Learning
Disabilities. It aims to draw attention to - and provide practical way of meeting the needs of - older people with
learning disabilities. In addition to a Briefing for Commissioners, an information pack will be published in the
Autumn providing advice on the kinds of problems seen at the different stages of dementia and how best to
respond to these. Other areas of the programme are looking at helping older family carers of people with learning
disabilities make plans for the future, and ensuring that peoples social lives are not neglected as they age.
The Foundation for People with Learning Disabilities is part of the Mental Health Foundation. This charity aims to
improve the lives of people through funding research and innovative service development projects. For further
information or a free newsletter on the GOLD programme contact David Thompson, 020 75357412,
E-mail dthompson@mhf.org.uk or www.learningdisabilities.org.uk.
SPEECH & LANGUAGE THERAPY IN PRACTICE AUTUMN 2001 24
how I
l manage
dementa
As our popuaton ages, so the ncdence
o dementa grows. At the same tme,
new orms o the dsease target a younger
age group. And peope wth pre-exstng
dsabtes are vng onger, presentng
addtona chaenges or carers as symptoms
o dementa appear. Drug treatment s as
yet mted to deayng the onset o
symptoms n some peope. Access to
specast and responsve servces rom the
start o the ness to the end stages s not
wdey avaabe. The roe o speech and
anguage therapsts s st beng deveoped.
vhat approaches empower aected
ndvduas, ames and sta' How do
we maxmse ndependence n
communcaton, eatng, drnkng and
swaowng' an we orge stronger
partnershps between heath, soca servces
and vountary agences' Our contrbutors
dscuss why they woud encourage
more speech and anguage therapsts
nto ths oten negected ed.
Julie Baker is a speech
and language therapist with
North Staffordshire Combined
Healthcare NHS Trust and works
with the elderly mentally
ill.(Speech and Language
Therapy Service, Residency 3,
North Staffs Maternity Hospital,
Hilton Road, Stoke-on-Trent,
Staffs ST4 6SD,
tel. 01782 552485/6.)
Mary Heritage is a specialist
speech and language therapist
in Southern Derbyshire and a
Royal College of Speech &
Language Therapists Adviser in
the Elderly (Speech and
Language Therapy Services,
Wilderslowe, 121 Osmaston
Road, Derby DE1 2GA, tel.
01332 363371 ext. 205.)
Scilla Reed is a specialist speech
and language therapist working
with adults with learning
disabilities. She is employed by a
large voluntary sector provider in
Lancashire. (Brothers of Charity
Services, Lisieux Hall, Dawson
Lane, Whittle-le-Woods, Chorley
PR6 7DX, tel. 01257 266311.)
you
oer tranng
are deveopng person
centred pannng
are poneerng a servce
Read this
SPEECH & LANGUAGE THERAPY IN PRACTICE AUTUMN 2001 25
how I
erson-centred care, collaborative care planning,
carer support, well-being, evidence-based practice,
quality of life...a few of the buzz words we are all
bombarded with these days if we are involved in
the care of the elderly mentally ill. But what do all
these mean for the average speech and language therapist,
and how do we weave them all into a service that we can rea-
sonably and effectively deliver? Why, in fact, do we provide a
service at all?
Like many other speech and language therapists, I found
myself faced with a large population of severely mentally ill
patients, spread across a wide geographical area covering
four separate hospitals and five wards, and with an inade-
quate time allocation of two sessions a week, term-time only.
How could I provide an equitable and efficient service and yet
make my mark?
Sadly, this group of people with dementia are so often for-
gotten or only responded to on demand when care staff are
at the end of their tether, with the speech and language ther-
apist called in as a last resort. Many professionals feel there is
nothing more to be done, and relatives watch from the side-
lines as their loved ones deteriorate into un-communicating,
unresponsive and unrecognisable beings.
Evolving service
The service which has evolved during the past two years has
begun to address some of these issues.
In partnership with ward staff and relatives I have produced
Life Story Books for those people who show some remaining
language skills and who have a relative visiting regularly.
These have provided the opportunity to:
share important life events and reminisce
focus conversations around a shared theme
rekindle the relationship between spouses
provide a means of carer support
provide activity-based training in communication skills for
care staff
acquire detailed knowledge of people which can, in turn,
be used in the planning of more person-centred care and
other ward activities.
Many of these are in line with the aims and principles of ser-
vice delivery as set out in Communicating Quality 2 (RCSLT,
1996) in the section on dementia.
Life Story Books have been widely used (Murphy, 1994) with
a variety of client groups in a range of settings. However,
their use at this stage of dementia is little reported in the lit-
erature. Evaluation of this project has revealed some out-
comes that were not anticipated at the outset (Baker, 2001). I
was particularly astounded by the collaborative approach
which rapidly developed between ward staff, management,
the relatives and myself. Although initially a relatively labour-
intensive project, once it was established on the wards it did
to some extent run itself, enabling me to concentrate on
other aspects of intervention.
Close working relationship
After this project had been running for 18 months, funding
was secured through the Shropshire and Staffordshire
Education and Training Consortium to train staff in Sonas aPc
(Threadgold, 1999) a multi-sensory group approach that was
originally developed by Sister Mary Threadgold for use with
people with learning disabilities. It was felt this approach
would extend the training in communication skills and envi-
ronmental modification that had started with the Life Story
Books. Many of the staff that attended the Sonas training
course were ones with whom I had developed a close work-
ing relationship simply by being involved in Life Story work
together. We trained 21 staff from mental health ranging
from a senior clinical nurse and ward / day hospital managers
(25 per cent) to occupational therapy assistants (10 per cent)
and health care assistants (33 per cent).
After the initial rush of enthusiasm by all concerned there
followed a winter of discontent when a combination of
nurse staffing levels at an all time low, high levels of staff and
patient sickness and uncertainty over ward closures meant
that the groups were not implemented as often as we would
have liked. However, this is the real world we live in, and it is
issues and challenges such as these that we are faced with on
a regular basis. Luckily I have the tenacity of a terrier and
have persevered with the approach, choosing to give each
location in turn an intensive input whilst providing a supervi-
sory service to the others. This has worked and good profes-
sional relationships have been extended. The Sonas groups
are running an average of three times a week on each ward
and several new staff have expressed a desire to become
trained in the approach.
Particular benefit
The information acquired during the compilation of the Life
Story Books - such as a persons favourite song or poem - is
proving to be useful material for the groups. In turn, I have
made some alterations in the type of information I collect
from relatives if a person has both a Life Story Book and is
participating in a Sonas group; for example, asking what a
ladys favourite perfume is. For some people on the wards,
the group sessions are not suitable and Sonas also has struc-
tured individual sessions which focus on music, touch and
relaxation. I have found these sessions to be of particular
benefit for agitated and anxious patients. The combination
of these approaches aims to heighten staff awareness of the
role of the speech and language therapist and accommodates
the fluctuations in behaviour that occur in dementia.
Both approaches are being evaluated - the Life Story Books
by user questionnaires and Sonas by the range of evaluation
materials they provide. Later in the year members of the nurs-
ing team will be using Dementia Care Mapping (Bradford
Dementia Group) to look at patients behaviour before, dur-
ing and after group sessions which early indications suggest
may provide a further evidence base for this approach.
We are setting up a Sonas users group aimed at all staff
involved in implementing the approach. We intend to meet
every four to six months to exchange ideas, solve problems
and provide peer support. As Allan (2001) observed, For
staff to provide high quality care they needed appropriate
support, such as regular opportunities to talk about what was
happening and how they felt about it. I look forward to see-
ing what evolves from this group in terms of working prac-
tices and relationships.
I also carry out individual language assessments to ascertain
level of functioning and change over time. This is a combina-
tion of observational, qualitative measures and more formal
assessments where appropriate. However, the Sonas group
situation is often an opportunity to acquire a more accurate
picture of a persons communicative abilities, and I am hoping
to develop this further.
My role as a speech and language therapist with the mod-
erately and severely mentally ill is one that can be applied in
continuing care settings, nursing homes, and day hospitals
and, to some extent, in the community. It enables most
patients to be involved in some form of intervention as well
as promoting active roles for their relatives and care staff at
all levels. It ensures a personalised, individual approach that
is beneficial for patients and hopefully enhances their quality
of life, and gives a high level of job satisfaction for me.
lvng
n the
rea
word
Jue Baker works
wth edery
peope who are
moderatey or
severey mentay
. The past two
years has seen a
transormaton n
the servce provded,
wth benets or
patents, reatves
and sta.
P

s
e
e

w
w
w
.
s
p
e
e
c
h
m
a
g
.
c
o
m
in
sid
e
fro
n
t
co
v
e
r
SPEECH & LANGUAGE THERAPY IN PRACTICE AUTUMN 2001 26
how I
References
Allan, K. (2001) Exploring ways for staff to consult people
with dementia about services. Executive summary. Joseph
Rowntree Foundation.
Baker, J. (2001) Life Story Books for the Elderly Mentally Ill.
International Journal of Language & Communication
Disorders, 36, Supplement, 185-187.
Murphy, J.C. (1994) It started with a sea-shell - Life Story Work
and People with Dementia. Dementia Services Development
Centre. University of Stirling.
Royal College of Speech & Language Therapists (1996)
Communicating Quality 2.
Threadgold, M. (1999) Sonas aPc activating potential for com-
munication. Manual.
Resource
Information and training in Dementia Care Mapping from
Bradford Dementia Group, tel. 01274 233996,
www.brad.ac.uk/acad/health/bdg/dementia.htm.
work with older adults in a mental health trust. Speech
and language therapy provides a service to inpatient
wards (assessment and continuing care), day care facili-
ties and a community dementia outreach service. As our
wards close over the next year, the work we have done
in the hospital setting needs to be rolled out into community
teams, nursing homes and family homes.
My main strategy is training. The underlying principle is that
my input will make little difference to the patients care unless
I can influence the behaviour of the staff and relatives. People
with dementia have impaired memory and often significant
comprehension difficulties. Direct intervention with the person
with dementia is unlikely to be carried over. By taking time to
explain, demonstrate, coach and give feedback, I can enhance
the carers competence and confidence in communicating or in
assisting with eating and drinking. Time spent with paid carers
is valuable because they can carry over the skills they have
learned from one person to another. Speech and language
therapists train people in a number of ways:
formal lectures to large groups
more informal workshops
skills training with assessment of competencies
coaching
case discussion
reports
and I use all of these in my work.
Nutrition in this Trust is managed by a multidisciplinary
team including dietitian, catering staff and pharmacist as
well as nurses and speech and language therapists. Screening
tools, dysphagia menus (including finger foods and snacks)
and picture menus have been developed by the team which
also audits the standards that have been set.
Allies
My main allies in managing dysphagia in this setting are the
nurses we have trained to use our locally developed tool
Screening for Dysphagia. This allows them to identify dys-
phagia, to write a care plan for food and drink provision for
people with dysphagia, and to update the care plan as the
persons condition progresses. I am currently preparing a
research study to validate this screening tool.
Many of the people who do have dysphagia have oral stage
dysfunction - for example, Feinberg et al (1992) found 71 per
cent - and the nurses are able to help them through modify-
ing the consistency of food and drinks. Those with complex or
severe difficulties are identified using the tool and referred
on to speech and language therapy.
The scheme is an extension of a larger project which origi-
nated in the Acute Hospitals Trust. The speech and language
therapy service in the Mental Health Trust was introduced in
1998, following a period of heightened awareness about
nutrition in the organisation. A set of screening tools was
launched to manage the clinical risks around eating and
drinking. The referral rate to speech and language therapy
dropped by 75 per cent within three months of the first
cohort of nurses being trained.
New
opportuntes
Tranng nurses to
use a dysphaga
screenng too
reduced reerras
to speech and
anguage therapy
by ; per cent n
three months,
aowng Nary
Hertage to ocus
on true dysphaga
and specc com-
muncaton needs
o oder aduts n
her menta heath
trust.
Eating and drinking difficulties in dementia are common; for
example, Steele et al (1997) found 87 per cent. However, many
of these difficulties are behavioural, such as cramming or need-
ing cues to initiate eating behaviour. Nurses in this specialist set-
ting are competent to deal with these behavioural difficulties
but use the tool to identify true dysphagia. A small number of
patients are referred to us for eating or drinking difficulties.
This may be because they have a severe or complex dysphagia.
While in the USA there is widespread use of PEG (percutaneous
endoscopic gastrostomy) feeding for any condition in the older
person, in the UK PEGs are often not available to people with
dementia. A few people here have had a PEG and, in these spe-
cific cases, I feel that it is appropriate management (Barratt,
2000). I usually use a mealtime for assessment, observing the
assistance provided by staff as well as the persons ability to eat
and drink. I am then able to provide feedback and guidance as
to what appeared to help or hinder them. The recommenda-
tions are usually made jointly by me and the nurse, following
discussion on what we saw. This then enables us to:
identify and manage risks
maintain independent self-feeding for as long as possible
empower the nursing staff, and
increase nurse ownership of the recommendations made. It
is rare here for compliance to be a problem.
Assisting
Other ward staff need to access an ongoing programme of
workshops aimed at raising awareness of eating and drinking
difficulties and improving the skills of all grades of ward staff
in relation to patients mealtimes. The onset of oral stage
dysphagia correlates with the onset of eating dependency
(Siebens, 1986), so it is vital that staff and carers are skilled in
maximising self feeding and concentrate on assisting rather
than on feeding. Training for them includes consideration
to the environment as well as their own behaviour.
Because the number of direct referrals to speech and language
therapy has fallen so drastically, I have been able to accept referrals
for people with communication disabilities associated with demen-
tia. Referrals usually come from the day hospitals and are for people
whose communication is a specific area for concern for the person or
their relatives, over and above their level of cognitive functioning. I
use formal assessments but prefer to engage in or observe natural
conversational behaviour. This is often only possible to do in the
persons home environment where they feel more relaxed, and
where cues for communication are at hand. I can observe the
communicative strategies used by family members and feed back
to them which are more successful and others that may also help.
It is vital to be positive and concentrate on the strengths of the
carer and the person with dementia. I hope to start to use video
as a tool for this purpose. I write reports and recommendations that
are aimed at the carers and copied to the other professionals. These
give concrete examples of strengths and strategies; for example,
ways of cueing that seem to help; aids for initiating or anchoring
conversation. Life story work can help those who are trying to find
something to talk about and a shared focus for conversation
(Murphy, 1994). I am able to feed back the information gained
l

SPEECH & LANGUAGE THERAPY IN PRACTICE AUTUMN 2001 27

how I
on a home visit to the staff who see the person only in the
unnatural setting of the day hospital or respite ward.
As the proportion of older people in this country increases,
the number of people living with a dementing illness will
increase. Awareness about communication disability and eat-
ing and drinking difficulties needs to improve, in both pro-
fessionals (including speech and language therapists) and car-
ers. The National Service Framework for Older People (DH,
2001) offers opportunities for speech and language therapists
to work in new ways and in new areas. I hope more of us will
be able to apply our skills to help those living with dementia
as a result.
References
Barratt, J. (2000) A patient with Alzheimers disease fed via
PEG, with personal reflections on some of the ethical issues
arising from this case. J Human Nutrition and Dietetics 13 (1).
Department of Health (2001) National Service Framework for
Older People (www.doh.gov.uk/nsf/olderpeople.htm).
Feinberg, M. J., Ekberg, O., Segall, L. & Tully, J. (1992)
Deglutition in elderly patients with dementia: findings of
videofluoroscopy evaluation and impact on staging and man-
agement. Radiology 183.
Murphy, C. (1994) It started with a Seashell. Stirling: Dementia
Services Development Centre.
Siebens (1986) Correlates and consequences of eating depen-
dency in institutionalised elderly. J American Geriatric Society 34.
Steele, C.M., Greenwood, C., Ens, I., Robertson, C. & Seidman-
Carlson, R. (1997) Mealtime Difficulties in a Home for the
Aged: Not Just Dysphagia. Dysphagia 12 (1).
s a speech and language therapist employed by
a large voluntary sector provider for adults with
learning disabilities, I am in the privileged -
though potentially isolating - position of being
able to work in a broader framework and with
more of a holistic remit than many of my NHS colleagues.
The organisation has, for some time, worked to meet the
needs of the users of our service in relation to the four con-
temporary goals of inclusion, rights, independence and
choice (DH, 2001). A relatively large amount of my time has
been spent helping our service users achieve some under-
standing of these concepts, and enabling support workers to
identify and break down the communication barriers towards
achieving these ends.
I, and my colleagues in the multidisciplinary team - physio-
therapists, social workers and learning disability nurse - have
been able to immerse ourselves in the everyday lives of our
users in what was once a village style community. Many now
live in houses in local towns and villages, and we offer support
and advice through informal as well as through formal channels
of referral. It is sad then that, with so much emphasis on the
development of inclusion and independence, a greater number
of people than in the general population - possibly four times
as many (Alzheimers Society, 2000) - will, because of the
onset of dementia, begin losing skills and require an increas-
ingly high level of support and specialist services at often a
relatively young age.
A particular group, those with Downs Syndrome, are par-
ticularly vulnerable to Alzheimers type dementia. By the age
of forty all will have developed the characteristic neurological
changes and by sixty over half will have developed the disease
(Mental Health Foundation, 2001a).
Motivation enhanced
The key to the successful management of dementia within our
service is staff training and ongoing support. To provide carers
with a sound knowledge base, members of the multidiscipli-
nary team have introduced a series of courses among which
the three day Understanding Dementia and Safe Swallowing
is mandatory for all staff supporting people who have, or are
likely to develop, dementia. The course informs participants
about the causes, symptoms and management of the disease -
with particular emphasis on facilitating communication, under-
standing behaviour and supporting memory loss - and gives
clear guidelines for support and specialist referrals. Staff moti-
vation to increase their knowledge is enhanced by being able
to develop their practice in the workplace and produce evi-
dence towards achieving National Vocational Qualifications.
A further course, Helping People to Understand places
communication in a developmental cognitive linguistic
A
hostc
approach
The key to the
successu
management o
dementa n
peope wth
earnng dsabtes
s sta tranng
and ongong
support. Sca
Reed expans why
a team approach
to derenta
dagnoss s aso
essenta.
framework, before exploring strategies to assist comprehen-
sion. Support workers are made aware of the importance of
careful assessment to enable them to analyse the role that
nonverbal and contextual clues play in an individuals com-
prehension. This equips them to notice subtle changes in their
service users ability to understand. I hope in time to have the
courses accredited so that support workers can add them to
their portfolio for the new Learning Disability Awards
Framework to be introduced shortly.
A recent report (Mental Health Foundation, 2001b) has rec-
ommended individual baseline assessments of cognitive and
adaptive functioning for people with Downs Syndrome
(preferably by the age of 30). Fortunately, because of the high
level of support required by our users, and because of the
increased knowledge and awareness of our staff, identifica-
tion of changing needs is often made comparatively early in
the progress of dementia in individuals within our service. I
might be consulted in the early stages when a person shows
evidence of word finding difficulties or is increasingly unable
to engage in spontaneous conversation. In the absence of
speech, initiating less gesture or showing reduced under-
standing are sometimes identified as early symptoms.
Following initial identification of changes in the persons
skills, communication and behaviour, the team would recom-
mend that investigations are carried out to exclude other
physical or mental health issues which might contribute to, or
be the cause of, symptoms.
Hypothyroidism, sleep apnoea and depression are particu-
larly prevalent in people with Downs Syndrome and can all
cause lethargy, a decline in functional skills and lack of moti-
vation. Depression may be the result of an experience of loss
relating from the death of a friend or relative, or movement
of staff or home. As well as withdrawal and increased depen-
dency, other signs we would look for which lead us to suspect
depression are an increase in, or appearance of, self talk and
aggressive acting out. We are fortunate to be able to refer
people to an excellent Specialist Psychiatrist who will consid-
er environmental and psychotherapeutic management before
the sympathetic use of medication.
I myself examine changes in hearing using pure tone
audiometry or a speech discrimination test before, if neces-
sary, referring the person to the ENT department for further
assessment and advice. Presbyacusis occurs in comparatively
young people with Downs Syndrome; a developing sen-
sorineural hearing loss will usually mean confusion resulting
from a decreased comprehension of speech. In my training
around hearing impairment I emphasise the importance of
aural hygiene to keep the conductive element of the loss to a
minimum. I also find it useful to translate the audiogram for
carers so they have some idea what the particular pattern of
A

SPEECH & LANGUAGE THERAPY IN PRACTICE AUTUMN 2001 28

how I
loss means to that individual in terms of speech discrimina-
tion, understanding and fatigue, and to draw up individual
guidelines for good practice.
In my experience amplification, even when sensitively intro-
duced, is often unsuccessful and can result in more confusion
as people have to adjust to new patterns as well as to
increased volume of speech, often against considerable back-
ground noise if they are living and / or working in busy envi-
ronments. One man had apparently thrown his aid into a
field on his way home and claimed the cows had eaten it!
Favourite equipment
My favourite piece of equipment, and one I recommend regu-
larly to support workers, is an easily obtainable and relatively
cheap personal speech amplifier. Used with light headphones
rather than earpieces, they are invaluable for facilitating con-
centration, social interaction and one to one conversations.
Glaucoma, tunnel vision and cataracts are all more common
in people who have Downs Syndrome, many of whom will
also suffer from deteriorating depth perception. Symptoms
of object/person recognition difficulty, decreasing skills, self
talk, paranoia and other
behavioural disturbances
may well be caused or exac-
erbated by any of these. I was
recently involved with a
woman who, towards the
end of her life, gained access
to an optometrist who was
prepared to come and assess
her in her home and pre-
scribed glasses. The increase
in awareness of her sur-
roundings and interaction
with her carers was dramatic
adding considerably to the
quality of the final few
months of her life.
To coincide with these diag-
nostic activities, a group of
support workers and relevant
professionals is usually estab-
lished to support the person
and their carers. If the client
has not already been involved
in a person centred planning
process we aim to proceed
with them taking as active a
part as possible. This will
hopefully help towards plan-
ning future services to include
those things which are most
meaningful and essential to
the individual. We are gradu-
ally introducing Life Story
Books for all our service users
and Life Boxes, collections of personal objects and photos from
the past and present, have also been used to aid reminiscence
and reality orientation.
Consistent staffing
At this early stage we aim to help the person retain their rou-
tines and familiar activities for as long as possible by sup-
porting them in their work areas. Consistent staffing is also a
priority. Staff will be offered training in total communication
techniques according to the individuals needs. If not already
in use I will introduce visual and / or object timetables to be
used on a weekly or daily basis as appropriate. A need for
most people is to know who is and who will be supporting
them at home or in their activities; strategies will be designed
to support this.
At some point it might be necessary to consider a residen-
tial move if the accommodation or support is not suitable.
The group will consider this with sensitivity and I see my role
as helping the person to understand this to the best of their
ability. We do have a nursing facility within our complex and
so are able to provide for people throughout their illness. If
they are well enough, and wish to, they can also attend an
activity unit which specialises in meeting the needs of people
in the later years of their life. Here they can participate in
sensory and reminiscence activities, aromatherapy and are sup-
ported by people who focus on creative ways of interacting
and maintaining their skills and interests. My involvement here
includes encouraging the development of peer and staff signing.
Whether in their original home or in the nursing unit I will
inevitably be called in at some point to manage the eating and
drinking difficulties the person will begin to experience. It is a
credit to the team approach that the incidence of chest infec-
tions has dramatically decreased although I have heard the
nurses comment that we ought to have shares in thickeners!
I feel fortunate to be able to work in an organisation which
is committed to providing for peoples needs at every stage
of their life, but it is not without its frustrations. People with
dementia require higher levels of staff support than they
might have originally been funded for and so we are some-
times restricted in the support we can offer by the financial
policies of each individuals funding authority. The knock-on
effect of inadequate funding leads to a high turnover and/or
shortage of staff - a situation which can only have a detri-
mental effect on the quality of life of people both with and
without dementia. Constantly training new staff limits the
time I can spend developing my service.
Despite these qualifications, I feel optimistic about the level of
holistic and multidisciplinary service that can be offered to our
service users, based on the above ideals. When funding and
staff resources are in place, the sometimes subtle and insidious
symptoms of dementia in adults with learning disabilities can
be managed in a caring and appropriate way which can only
support and enhance the quality of life of the individual - an
aim which is not always met in the mainstream population.
References
Alzheimers Society (2000) Learning Disabilities and Dementia.
Department of Health (2001) Valuing People. DH Cm. 5086.
Mental Health Foundation (2001a) Learning Disabilities - The
Fundamental Facts.
Mental Health Foundation (2001b) Downs Syndrome and
Dementia: Briefing for Commissioners.
Further reading
Cohen, W.I. (1996) (ed) Health Care Guidelines for Individuals
with Downs Syndrome. Down Syndrome Quarterly 1 (2) June.
Kerr, D. (1997) Downs Syndrome and Dementia: Practitioners
Guide. Venture Press.
Rondal, J.A., Perera, J., Nadel, L. & Comblain, A. (1996)
Downs Syndrome - Psychological, Psychobiological and
Socioeducational Perspectives. Whurr.
+. Empower sta and carers through tranng.
. Assess n the home envronment possbe
and mx orma assessment wth observaton.
. Notvate other proessonas and carers by
makng jont recommendatons.
(. Emphasse the postve - what someone can
do, what heps them to do t - and keep
them dong t as ong as possbe.
. Take advantage o the potca cmate and
thnk o new ways o workng.
. onsder whether your goas meet the crtera
o ncuson, rghts, ndependence and
choce.
;. Encourage more peope to partcpate n and
vaue tranng by gettng t accredted.
8. Take care to excude sensory or other causes
o dementa symptoms.
,. lndvduase care and gve a shared ocus
or communcaton by usng person centred
pannng, e story books and e boxes.
+o. locus on an ndvdua cent to promote
coaboratve workng wth sta and
reatves.
Practical points

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E VE NT S
6 November, 2001
NW ALD SIG
Value Conference
A one-day conference aimed mainly at speech and
language therapists working with adults with learn-
ing disabilities.
valuing communication
valuing people with learning disabilities
valuing other therapists and innovation
valuing research and policy
value for money
50 per person - a no frills event
Includes discussion forum on Royal College of Speech &
Language Therapists guidelines for therapists working
with adults with learning disabilities chaired by Anna
Van der Gaag. Speakers include Janice Murray, Scilla
Reed, Cath Irvine, Sue Thurman, Tracy Bell and Helen
Meades.
Venue: Professional Development Centre, Rosary
Road, Fitton Hill, Oldham
Details: The Communication Therapy Team, Learning
Disability Service, Broadway House, Chadderton, OL9
8RW, tel. 0161 911 3868.
4 September, London
25 September, Chorley
Speakability Forums
For speech and language therapists working with
adults with aphasia. Includes presentations from Prof.
Chris Code and Connect.
30
November 2001
London, Manchester, Newcastle, Edinburgh
Mary Law Lectures
Professor David Howard on The Argument for
Randomised Control Trials in Aphasia Therapy.
Details: Speakability, tel. 020 7261 9572.
11-13 November, 2001
Fifth Annual Conference - MS Research Trust
The Majestic Hotel, Harrogate
Aimed at nurses, health and social care professionals
with a special interest in multiple sclerosis. Nationally
recognised speakers, seminars and workshops.
Secretariat: Packer Forbes Communications, tel. 020
8772 1551, e-mail MS2001@packerforbes.co.uk
FOR MORE EVENTS SEE PAGE 23
The team at the
london onnect entre
conssts o speech and
anguage therapsts,
counseors, amy
support workers,
students and
vounteers. ln
partnershp wth
ames and heath and
soca care workers, we
hep peope vng wth
aphasa to deveop
new sks or
communcatng wth
condence, so that they
can reconnect wth
ther ves. ve do ths
through practca
therapy, and educaton
and tranng servces,
underpnned by
research. ve are Sue
Boazman, Deborah
arns, Harry arke,
Natasha Greenste,
Gwen Knght, Jayne
lndsay, Say NcVcker,
Tom Penman and
aroe Pound.
. Bobby Nen
This simple line drawing shows a number
of Blobby Men at various stages of
climbing a large tree. Some are sitting
at the bottom looking up, some are
pulling others up onto the first branches,
whilst some stand triumphantly at the
top surveying the vista. We have used
this resource as a non-verbal means of
exploring where people feel they are
at, and where they want to be. Often
people indicate that they are different
Blobby Men to different people and in
different places, and even on different
days. Its a great fun way to start discussions
- and perhaps even a non-verbal outcome
measure?
See Pound et al (2000) Beyond Aphasia,
Winslow, p.234.
;. Dysphasa
Natters vdeo
Covers a range of
information about aphasia
in an accessible way.
Unlike a number of other
educative resources, it
illustrates the psychological
and social outcome of
aphasia, rather than just
focusing on neuromedical
aspects. Aphasic peoples
stories form a significant
part of the video, providing
persuasive first-hand
accounts of aphasias impact.
From Speakability, 1
Royal Street, London, tel.
020 7261 9572.
+. Heo and Okay
magaznes
No conversation group
should be without these.
Easily accessible gossip,
well supported by photos
and often minimal text.
The pictures alone tell a
thousand stories and
allow for plenty of verbal
and non verbal expres-
sion of opinions.
. The Aphasa Handbook
This resource packs together loads of information
relevant to everyday issues for people living
with aphasia, from finding your way through
the hospital maze to accessing adult education
and other learning opportunities, and much
much more. It is easy to navigate through the
clearly marked sections (What happened?;
What next?; Living with aphasia; Choice &
Rights) with simplified text and picture backup
throughout. It has also been very useful in
stimulating and extending discussions with
clients and families. The enclosed information
cards that explain what aphasia is and include
communication guidelines are eye-catching and
straightforward as well.
12.75 incl. p&p from Ecodistribution, 117 Main
Street, Woodhouse Eaves, Leics. LE12 8RY.
(. Postcards / abstract
art
These can be really useful
in reaching the parts that
other picture materials
cannot. A Picasso or a
Munch can often portray
abstract and complex
concepts in a way that
simple facial expression
pictograms cant. They can
also help people explore the
subtleties and ambiguities of
living with aphasia, leading
to discussion of differing
perceptions and
interpretations of the art
and personal experience.
. part
Great for developing
aphasia friendly
materials, such as
minutes of group
meetings, timetables
and leaflets. The
Microsoft Design
Gallery
(http://dgl.microsoft.
com/default.asp),
amongst many others,
offers on-line access
to a huge variety of
pictures - including
line drawings, photos,
symbols and
animations.
. Aura Kagans Pctographc ommuncaton Resource
(PR) manua
Aside from the huge number of easily photocopiable pictograms which can
support goal setting, constructing communication books or conversation
groups, the manual helps clinicians think in new ways about developing
pictographic support for conversation. In particular the way the manual
demonstrates use of pictograms to discuss abstract concepts - such as the
future, power of attorney, and the claustrophobia you might experience in
a brain scanner - gives useful insights for therapists, health care workers
and relatives regarding communicative access for people with aphasia.
$285 from The Aphasia Institute, 53 The Links Road., Toronto, Ontario,
Canada.
8. Vdeo equpment
For use in data gathering and
evaluation (for example,
samples of interactions within
and beyond the clinic;
assessments; progress review)
and self-appraisal for clients,
relatives - for example,
judging effectiveness of
communication strategies -
and clinicians alike, education
and dissemination (including
videos made by group
members to describe and
illustrate the nature of
aphasia and communication
disability). Also, plays a big
role in student and staff
training and supervision.
,. Students and vounteers
They can be fantastically useful in delivering an
intensive, vibrant and varied service. Their
enthusiasm and commitment, and often very
varied backgrounds and experience, can add to the
skill set of a team - and they are often the ones
who dont carry our professional baggage and are
willing to try out new and creatve ideas. Time does
need to be specifically set aside to develop and
support this valuable resource, and a careful eye
kept on balancing the needs of students/volunteers
with those of the clients we work with.
+o. Pebbes
Our counselling team sometimes use pebbles of
different shapes, sizes and colours to help clients
express aspects of complex interactions and
relationships. Carefully choosing a pebble to
represent other people and placing them in relation
to each other can be a helpful way to clarify social
bonds and networks for people with less access to
speech or writing. Their use can take a counselling
session further in discussing change and loss, and
can take the pressure off verbal communication in a
potentially emotional situation.
MY TOP RESOURCES