Speech & Language Therapy in Practice, Winter 2000

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WINTER 2000

Evidence-basedpracticeFragile X

Health promotionA programme for nurseries

EarlyinterventionParent groups

In My ExperienceLeadership

How Imanageprogressiveneurologicaldisorders

MyTopResourcesAAC

P R E - E M P T I V E P R A C T I C E

http://www.speechmag.com

Keeping

people athomeCollaboration with

district nurses

ISSN 1368-2105


2/32

Winter 2000 speechmag

Penny Gravill and Aileen Hyland,speech and language therapists withGrampian University Hospitals NHSTrust, report on the 10thAugmentative Communication inPractice: Scotland Study Day.

Reprinted articles

Fragile What? - A parents perspective onFragile X Syndrome. (Feb/Mar 1996, 5 (2))**Edel Tuckwood reflects on the effect her sonsFragile X diagnosis has had on her family andsuggests ways speech and language therapistscan help with this still little known condition.

It pays to share our skills. (Sep 1989, 5 (4))*Jenny Jones explains how spreading the wordabout speech therapy in nurseries increases itseffectiveness.

Parent-based approaches - the case forlanguage goals. (Summer 98)***The trend in the field of child language is tofocus on parent-child interaction therapy. DrDeb Gibbard argues a more specific linguisticapproach is also required when workingthrough parents.

From Speech Therapy in Practice* / HumanCommunication**, courtesy of Hexagon Publishing, orfrom Speech & Language Therapy in Practice***

Also on the site - contentsof back issues and news

about the next one, links toother sites of practical value

and information aboutwriting for the magazine.

Pay us a visit soon.

w

ww.spee

cm

ag.c

om

Now available:subscribe or renew

online!

This new text from two eminent specialists

in their field provides a sound theoretical

framework for patient-centred voice therapy

and offers a rich variety of practical andphotocopiable resources.

The multi-dimensional structure of

Stephanie Martin and Myra Lockharts

book allows the clinician to look at

specific aspects of patient management,

clinical effectiveness, clinical gover-

nance and service management.

The normal retail price is 29.95 but Speech & Language

Therapy in Practice has FIVE copies to give away FREE to lucky readers, cour-

tesy of Winslow.

To enter, simply send your name and address marked Speech &

Language Therapy in Practice - voice offer to Kate Boyes, Winslow,

Telford Road, Bicester, OX26 4LQ.

The closing date for receipt of entries is 21st January, 2001. The winnerswill be drawn randomly from all valid entries and be notified by 31st

January.

Working with Voice Disorders is available along with a free

catalogue from Winslow, tel. 01869 244644.

Win photocopiable material

Win Working withVoice Disorders

Previous winners...Congratulations to Nuala Ribeiro who was drawn out of the hat for

Laureate software and Hilary Armstrong who won Personalised Advice

Booklets for Aphasia in the Summer 00 issue. Congratulations also to the

winners of our Autumn 00 reader offers - Helen Aguirre receives the

CELF-3UK and Enid McCracken gets Speech Sounds on Cue. All the prod-

ucts will be reviewed in future issues.

Due to the popularity of the last reader

offer for their photocopiable material,

Black Sheep Press have come back with

more!

This time, FIVE lucky readers will each

benefit from resources which normally

retail at 59. You can win seven new sets

of consonant worksheets (r clusters),

useful for one to one sessions and

home or school programmes, and

three negatives packs (verb/

noun/adjective) suitable for children

from 3 years.

To enter this FREE prize draw, just

send your name and address marked

Speech & Language Therapy in

Practice - BSP to Black Sheep Press,

Coast Cottage, Donna Nook, Louth,

Lincs LN11 7PA, or e-mail alan@black-

sheeppress.co.uk. The closing date forreceipt of entries is 21st January, 2001.

The winners will be drawn randomly from all valid entries and be notified

by 31st January. All entrants will receive a copy of the Winter 2000/1 cata-

logue which includes details of other new material.

http://www.speechmag.com

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3/32SPEECH & LANGUAGE THERAPY IN PRACTICE WINTER 2000 1

19 ReviewsCELF-PreschoolUK and Dont Hang Up - A training package.

20 Parent groupsWe aim to provide a consistent,

readily accessible early intervention

programme to the families of

preschool children with Down

Syndrome in the City of Manchester.

There are four key aspects to the

programmes success: empowering,

informing, teaching and explaining.

Robert Robinson and Karen

Bailey explain how the city wide referral of parents

to their early intervention group programme is

benefiting children with Down Syndrome.

24 How I manageprogressive neurologicaldisordersOnly by making noises in the right places can we

hope to improve services for this neglected section of

the population. The way to be heard, however, is to

be certain of our own role and that of others

involved, and be clear about what can be done.

The symptoms of progressive neurological disorders

can strike at any age and are unpredictable and

variable. Margaret White, Christine McCormick

and Lucy Freeman explore some of the issues.

30 My TopResourcesSome apparently ideal

candidates for voice

output communication aids

simply do not like using

them and feel more

comfortable with other AAC methods. Having

equipment available to borrow helps client and their

enablers think about whether such technology will

actually suit the

individuals preferences.

Wendy Tuson, Caroline

Nicholson, HermienNieuwoudt, Debbie

Charles and Morwenna

Larkin all share an

interest in augmentative

and alternative

communication (AAC) and

meet regularly to discuss

and develop their service.

WINTER 2000(publication date 27th November)

ISSN 1368-2105

Published by:Avril Nicoll33 Kinnear SquareLaurencekirkAB30 1ULTel/fax 01561 377415e-mail: [email protected]

Production:Fiona Reid

Fiona Reid DesignStraitbraes FarmSt. CyrusMontrose

Website design and maintenance:Nick BowlesWebcraft UK Ltdwww.webcraft.co.uk

Printing:Manor Creative7 & 8, Edison RoadEastbourneEast SussexBN23 6PT

Editor:

Avril Nicoll RegMRCSLT

Subscriptions and advertising:Tel / fax 01561 377415

Avril Nicoll 2000Contents of Speech & LanguageTherapy in Practice reflect the viewsof the individual authors and notnecessarily the views of the publish-er. Publication of advertisements isnot an endorsement of the adver-tiser or product or service offered.

Any contributions may also appearon the magazines Internet site.

Inside coverWinter 00 Speechmag

Reader offersWin Working with Voice Disorders and Black SheepPress resources.

2 News / Comment

4 Fragile X SyndromeThere is a mismatch between the vocabulary /

language capability of people with fragile X and

what it can appear to be in certain circumstances and

it is up to us as speech and language therapists to

find ways of unlocking their potential.

Avril Nicoll pulls together highlights from

presentations by Dr Vicki Sudhalter to Fragile X

Society Family Conferences, and Catherine Taylorprovides extra ideas for intervention.

8 Working with nurseriesSupport, money and dogged perseverance enabled

us to try out a hypothesis and stringently measure

the results - something we had aspired to in principle

but never had the chance to do in practice.

Early findings of Angela Hurd and Diana

McQueens phonological awareness programme

show that the principles of prevention, intervention

and collaboration really work.

12 In my experienceCommunicating Quality 2 (1996) recognises the needfor speech and language therapists to train others such

as carers to carry out therapeutic procedures;

responsibility remains with the therapist. However, it

does not adequately address across professional

boundary education where roles may become blurred.

Helena Bowles experience of nurse training in

dysphagia screening leads her to call for change at a

strategic level to improve the effectiveness of cross-

professional training.

15

FurtherreadingParkinsons

disease, child

language,

Turner

syndrome,

fluency, aphasia.

ContentsWINTER 2000

Cover pictureby Paul Reid.

With thanksto DistrictNursemodels andGrampianPrimary CareNHS Trust.

See page 16Pressures,

priorities andpre-emptivepractice.

www.speechmag.com

IN FUTURE ISSUES ADULTS WITH MILD TO MODERATE LEARNING DISABILITY EDUCATION

NEURODISABILITY PHONOLOGY CHILD DEVELOPMENT MANAGEMENT

Collaboration in the communityWe aimed to address the early identification of patients in thecommunity with dysphagia by heightening district nurses aware-

ness, thus improving professional links and knowledge of roles.

New initiatives strive both to keep people out of hospital for

longer and discharge them more quickly. Jane Cantwells

collaborative work with district nurses aims to improve timely

access to dysphagia services by people living at home.

16 COVER STORY


4/32

Employment rightsThe British Stammering Association is to address

employment rights for adult stammerers with the

help of a three year award from the National Lottery.The 209,314 grant will allow the BSA to address

employment rights for adult stammerers through the

Disability Discrimination Act and to research how best to disseminate this infor-

mation to employers and legal professionals.

This year, for the first time, the BSA is selling Christmas cards to raise funds in a

bid to keep important services running. These include the Parental Awareness

Campaign, the Helping Stammering Pupils Project, the Speaking and Listening

Course and the Information and Counselling Service. For an order form, tele-

phone 020 8983 1003 or see www.stammering.org (note new website address).

The Helpline number is 0845 603 2001.

Dysphagia carecriticised

Older people across Europe are suffering

unnecessarily because health carers are fail-

ing to notice and diagnose their swallow-

ing problems effectively.

This conclusion followed a debate involving

a cross-section of European health profes-sionals and patients at the Dysphagia 2000

congress in Munich. Frances Hunt of Age

Concern called for immediate action to end

staff shortages by making trained staff

available across all days of the week and

times of day as a matter of urgency.

Unmanaged dysphagia can lead to pneumonia,

dehydration, malnutrition and death. It is

estimated that up to 22 per cent of people

over 50 years suffer from dysphagia. Of

these, 13 per cent are in short-term care and

up to 60 per cent live in nursing homes.

SPEECH & LANGUAGE THERAPY IN PRACTICE WINTER 20002

news

The need of minority ethnic groups for dementia services has been recog-

nised in two developments in Scotland.

A Polish-speaking support worker has been funded to develop services

among the Polish community in Lothian who originally went there in the

1940s to join the armed forces and are now mainly frail and in their 80s. The

outreach project aims to help people whose dementia has resulted in a

return to their mother tongue and a life in another homeland - in this case,

often to times in a concentration camp or as a refugee. Alongside this, a

Scottish-wide leaflet on help available to people with dementia and their

families has been translated into Polish, Hindi, Urdu, Bengali and Chinese.

The charity behind these ventures has welcomed the UK launch of a new

drug for the treatment of Alzheimers disease but warned that, as a result of

funding shortages leading to postcode prescribing, not everyone who

might benefit will be able to receive it on the NHS. Alzheimer Scotland hasfound many people are not even being told that drug treatments exist.

As with the other anti-dementia drugs (Aricept and Exelon), Reminyl is not a cure.

It does however help symptoms in some people, particularly social skills, the qual-

ity of relationships and independence. The charity says health economists have

estimated the cost of the drug would be offset by savings made on services.

Meanwhile, the Alzheimers Society reports on very early human trials of an anti-

amyloid drug which may act as a vaccine against Alzheimers, and other studies into

the possible beneficial effects of ibuprofen, HRT and Melissa officinalis (lemon balm).

Alzheimer Scotland - Action on Dementia has a 24 hour freephone Dementia

Helpline on 0808 808 3000 and an information sheet on the new drug.

www.alzscot.org.

Alzheimers Helpline 0845 300 0336.

Dementia developments

A pilot teletherapy project is bringing benefits to preschool children with

Downs syndrome and frail elderly people.

As part of a European-wide initiative, therapists at South & East Belfast Health

and Social Services Trust are using videoconferencing systems to link homes

and a MENCAP nursery. Parents of children with Downs syndrome can observe

the therapist and therapists can view the parent and child in their home. The

link has proved particularly useful for development of MAKATON signing and,

by virtue of the record facility, partners and other family members can alsoview sessions in their own time.

The Trust is also providing a tele-homecare service to frail highly dependent adults

in their own homes. Staff can now see and respond quickly to changing conditions.

The technology is broadly welcomed by users once they overcome their shyness

and have concerns about privacy and access addressed. The UK pilot is part of

a wider European-funded project, ATTRACT, to enable doctors and therapists

to provide tele-homecare, tele-consultation and tele-rehabilitation via video-

conferencing links.

Charities restructureThe voluntary organisation for children and young people with speech and lan-

guage impairments is facing difficult times.Afasic has had to make several central office staff including their chief executive

redundant as a result of the priorities of its main funders - charitable trusts, compa-

nies and individuals - who are looking to support project-related work rather than

core central office functions. The organisation will concentrate on regional and

national developments and parent support, particularly through the Afasic Helpline,

publications and conferences. It has launched an appeal to secure the future of the

Helpline and Information Service.

An independent consultant is to examine ways in which Afasic and I CAN, the nation-

al educational charity for children with speech and language impairments, can work

together to provide vital services for children and young people.

The current climate is also affecting other charities, notably RADAR (the Royal

Association for Disability and Rehabilitation) which campaigns on employment, social

care, health and human rights issues. It is actively pursuing a merger to avoid closure.

Afasic tel. 020 7841 8900.

Teletherapy

Art forParkinsonsThe use of Art Therapy can

relieve some of the symptoms

of Parkinsons disease.

An article in the Parkinsons

Disease Society magazine

reports on the first pilot project

in the UK to use the technique.Initial results from a weekly

group in Shrewsbury are so

promising it is hoped to extend

the scheme to other areas.

Reported benefits include relax-

ation, assistance with breathing

and tremor, the development of

better self-awareness and social

skills and reduction in anxiety.

More than 120 000 people in

the UK have Parkinsons.

PDS tel. 020 7931 8080.

OT mattersRecent efforts to encourage people into a career in occupational therapy as therecruitment crisis deepens include the publication of a childrens book.

The vacancy rate is estimated at 20 per cent, without taking into account the need

for an increase in staffing levels to meet expanding demand. Each post averages

less than two applications and the biggest problem is in the south-east of England.

The new chief executive of the British Association and College of

Occupational Therapists, OT Sheelagh Richards, takes a positive view. She says

Over my thirty year career, I have never known a national policy environ-

ment to be so supportive of rehabilitation services. Having worked in both

health and social services I have first-hand experience of the great divide

and am wholly committed to the integration agenda. I feel very privileged to

be given the opportunity to lead the profession in such exciting times.

Mandys Mum is an OT, 4.50 from the College of Occupational Therapists,

tel. 0207 450 2337.


5/32

Autism gatewayA free, non-commercial service aims to be the firstport of call for anyone interested in finding up-to-

date information about autistic spectrum disorder

on the internet.

The web portal autismconnect contains details of

websites, events, conferences, support groups,

organisations and the latest research from around

the world. As a user-community, it is envisaged it will

evolve over time as a result of input from visitors. This

venture, following on from the innovative web con-

ference Autism 99, is co-sponsored by the National

Autistic Society and The Shirley Foundation.

To access the site: www.autismconnect.org

SPEECH & LANGUAGE THERAPY IN PRACTICE WINTER 2000 3

news & comment

Education, education,education,Speech and language therapists offering training to other professionals and

parents can be disappointed by the response, but everyone has competing

demands on their time. WhenJane Cantwelloffered dysphagia training to

district nurses, she established their perceived learning requirements then

worked with nurse team leaders to develop a relevant programme. Even so,

those attending only placed a high priority on the course when they

experienced for themselves how it related to individual clients needs.

Through her own venture into dysphagia courses for nurses, Helena Bowles

uncovered many questions raised by cross-professional training, whatever the

client group or profession. Lets hope her call for leadership on this issue is

heard.

Robert Robinson and Karen Baileyattribute the success of their parent group

to four key aspects - empowering parents, sharing information with them,

teaching them strategies and explaining the role of the speech and language

therapist. To this,Angela Hurdand Diana McQueen would add the need to

unpack underlying belief systems. When planning a programme in nurseries,

they were surprised by the extent of differences between the speech andlanguage therapy and teaching professions. Collaborative working can only

go ahead when this is understood and addressed.

As Christine McCormickand Lucy Freeman make plain, clients with

progressive neurological diseases need a particularly coordinated, speedy and

flexible response from a variety of professionals. Margaret White also speaks

of the frustration felt when we realise how little we, as individual therapists,

can do for these clients. Collaborative work - educating others and learning

from them - is the only answer.

The voluntary sectors role in raising awareness and providing specialist

services for people with progressive diseases is welcomed. In a different field,

the Fragile X Society has also done much to enable parents, teachers and

therapists to learn about the syndrome and implications for therapy, and the

article here follows on from two family conferences.

We can learn much from our peers too. Caroline Nicholson and colleagues

find their AAC working group continues to drive their practice forward.

Priorities of other professionals and parents will not always coincide with our

own, but a positive approach to education, education, education ensures we

can at the very least meet them half way.

...comment...

Avril Nicoll,

Editor

33 Kinnear Square

Laurencekirk

AB30 1UL

tel/ansa/fax 01561

377415

e-mail

[email protected]

TV opportunityDo you work with children with selective or elective

mutism? If so, educational documentary makers

Maverick Television would like to hear from you as

part of their research for a Channel 4 programme.

Contact Sarah Walker, tel. 01527 852660, e-mail

[email protected]

Award increasedWinslows annual bursary for speech and language

therapists has been increased to 1000.

The award is for a member of the Royal College of

Speech and Language Therapists undertaking a pro-

ject outside their place of work. Places such as under-

developed countries where the work of the appli-

cant is likely to have a significant impact are pre-

ferred. The company believes such projects also have

huge benefits for the award recipients.

Further information from Kate Boyes, tel. 01869 244644.

Dysphagia on the webAn internet service has been developed for elderly

people and their families and friends who want to

know more about dysphagia.

The website links together the work of the profes-

sional European Study Group for Dysphagia, Globus

(an international dysphagia patient advocacy group)

and Novartis, a company specialising in medical

nutrition solutions. An Age Concern study recently

showed that 4.6 million computer users in the UK

are aged 50 plus, with 4 million having a computer

at home and 81 per cent saying they find it easy to

use a computer.

www.dysphagiaonline.com

Sharing voice ideasExperienced voice care practitioners are being invit-

ed by the Voice Care Network UK to participate in a

practical interactive study meeting.

The meetings are essential for people who want to

be listed on the Tutor List, and also provide an

opportunity to support the work of the network and

reinforce skills. Practical ideas are shared, developed

and discussed and the sessions are led by established

network tutors. There are plans to hold a meeting in

or near London early in 2001.

The Voice Care Network brings voice teachers and

speech and language therapists together to help people

keep their voices healthy and communicate effectively.

Details: VCN PISM, 29 Southbank Road, Kenilworth

CV8 1LA.


6/32

research implications


hy do individuals with frag-

ile X communicate in the

way they do, and how can

we help them?

This question has been tothe fore during my research

over the past 14 years. I believe the key lies firstly

in treating people with fragile X as individuals

with a social phobia. Secondly, we must raise our

expectations. There is a mismatch between the

vocabulary / language capability of people with

fragile X and what it can appear to be in

certain circumstances and it is up to us as

speech and language therapists to find

ways of unlocking their potential.

It is also important to know about the com-

munication characteristics associated with

the syndrome so we can identify individuals

- for example among adults with learning

disabilities - who may have fragile X.Confirmation of the diagnosis points us in

the direction of appropriate intervention.

SurprisingAround three quarters of children with

Fragile X Syndrome have behaviours consis-

tent with attention deficit hyperactivity dis-

order: inattention, poor organisation, distractibil-

ity, fidgeting and impulsivity. Yet, although they

may seem not to listen, and to be forgetful of

daily tasks, it is surprising how often they remem-

ber exactly what has been said or what they have

been told will happen - particularly if it is impor-

tant to them.

W

Flying bythe seat

of ourpants?

In addition to the developmental

delay and specific speech and

language difficulties caused by

fragile X, other characteristic

features of the syndrome impact

on communication skills. The

implications of Dr Vicki Sudhalters

research include the suggestion

that eye contact should be actively

avoided in therapy.

Here,Avril Nicollpulls together

highlights from two full day

presentations by Dr Sudhalter to

Fragile X Society Family

Conferences, and Catherine Taylor

provides extra ideas for

intervention.

Read this if you

want to understand

how anxiety can affect

communication

believe eye contact is

always a core therapy

goal

need your practice to

be evidence-based

Additionally, hyperarousal and social anxiety are

central to Fragile X Syndrome. We have to be

aroused during a conversation but individuals

with fragile X cant come back down to a com-

fortable level, and this becomes aversive to theextent that they cant carry on a coherent conver-

sation. This leads to further anxiety, even com-

plete shut down, and becomes a vicious cycle.

Simple eye contact is arousing. Although people

with fragile X are friendly and excited about meet-

ing people, they simply cannot cope with eye con-

tact. Many of them have an overt

turning away. Higher-functioning

individuals may look up, but not at

your face. Contrary to normal prac-

tice with most clients, eye contact

should be actively avoided in thera-

py for people with fragile X. Sit

alongside or behind the children,

and dont look at them or ask themto look at you; over time, you may

be able to begin to ask if you can

look at them.

Additionally, many of the children

will be so overwhelmed by other

sensations that they will hide away.

They will not be able to tolerate

certain textures, lights, sounds, foods or smells.

We used to think that hand biting on the fore-

finger or thumb was almost diagnostic of fragile

X, and is another signal of anxiety meaning get

out of my face. Rocking is another non-verbal

behaviour seen in a lot of children in an uncom-

fortable situation. Another form of excitement is

Children and

adults with

fragile X have

tremendous

difficulties with

transitions. Ibelieve this

has to do with

anticipatory

anxiety.


7/32

participant was anxious versus when

the subject was comfortable. Others

found that filled pauses significantly

increased around points of emotional

arousal as defined by Galvanic Skin

Response deflections (sweat).We therefore investigated the pro-

duction of immediate repetitions of a

whole word or part of a word in con-

versation (Belser & Sudhalter, in

press). The study group comprised 10

individuals with fragile X, 10 with

autistic disorder, 10 with developmen-

tal delay not caused by fragile X, and

10 normally developing children. To investigate

the role of conversational context, the conversa-

tions were divided into direct response, initiation

of topic, and topic maintenance.

We predicted that males with fragile X would

produce more repetitive language than their

peers who did not experience disorders of anxiety

or arousal because we saw repetitive language as

an expression of the anxiety or the arousal. In

addition, we predicted that males with fragile X

would produce more repetitive language within

initiation because that conversational context

would cause them more social anxiety.

The results showed that 6 out of 10 males with

fragile X exhibited rates of repetitive speech that

exceeded 10 per cent of their conversational out-

put, while no individuals with non-fragile X learn-

ing disability or autistic disorder exhibited a 10

per cent rate of repetitive speech. The males with

autism produced the least amount of immediate

repetitive language, which talks to a totally dif-ferent level of intervention.

In another study (Sudhalter & Belser, under

review), we used the same groups of people and

looked at the percentage of tangential language

produced within direct responses, initiations and

topic maintenance. The results showed individuals

with fragile X produce significantly more tangential

language than individuals with autistic disorder,

normally developing children and other individuals

with developmental delay; and that they are far

more tangential within initiation and topic mainte-

nance. I believe their anxiety is not allowing them

to inhibit thoughts and so they come blurting out.

In a third study (Belser & Sudhalter, 1995), we have

begun to investigate the relationship between eye

contact, arousal and the production of atypical lan-

guage in males with Fragile X Syndrome, Down

Syndrome and Attention Deficit Hyperactivity

Disorder using skin conductance. Skin conductance

activity reflects changes in skin hydration caused by

the action of sweat glands controlled by the sym-

pathetic nervous system. Skin conductance level is

generally regarded as an indirect indicator of sym-

pathetic nervous system activity, and is often used

as a measure of relative level of autonomic arousal.

We examined the relative differences in skin con-

duction level and linguistic error production

between two conditions; one where eye contact

was maintained and one where it was not.



hand flapping which enables children to let off

steam. We have to remember, though, that this is

not only evident in individuals with fragile X but

is part of normal development.

AnticipatoryChildren and adults with fragile X have tremen-

dous difficulties with transitions, even to the

extent that they cant get from the bus to the

house or from the car to the driveway and into the

house. I believe this has to do with anticipatory

anxiety. They can also tantrum when they feel out

of control. They are anxious, uncomfortable, being

forced to do things that they dont want to do -

and they just dont want to transition.

Some of the research that my colleagues and I

are carrying out in Staten Island has been looking

into the relationship between the amount of

fragile X protein produced by fragile X individuals

and their behaviour. It is believed that, at least in

part, the absence of the fragile X protein normal-

ly produced by the fragile X gene can explain the

learning disabilities and behaviours we see in

Fragile X Syndrome. In some people with fragile

X, none of this protein is produced while, in many

others, a certain percentage will be.

Most of the children, whether they are making

protein or not, hand flap. Shyness is also present

across the board. However, ninety five per cent of

the children who make no protein will use perse-

verative language whereas this behaviour is not

seen consistently in the children who are making

some protein. Perseveration is found both in ver-

bal and nonverbal behaviours.

When we look at the young pre-

pubertal males we see that, whether

or not they are making protein,

almost all are anxious and have poor

eye contact. Among post-pubertal

males, those who dont make anyprotein continue to hand flap and

produce perseverative behaviours.

Poor eye contact and anxiety remain

across all individuals. So, the anxiety,

poor eye contact, shyness and perse-

veration that are present in young

children continue - and perhaps even

get worse as they get older.

Females with fragile X, even those with the pre-

mutation, will also have attentional problems and

many of the other behaviours we see in the males

but in a milder form. Girls with fragile X experi-

ence difficulties with transition and may also have

impulsive behaviour. They have classic maths prob-

lems. In addition to very poor eye contact, shyness

and social anxiety are often presenting features.

Executive functioning is the ability to organise

your tasks logically including being able to stop

and think, or stop and wait. The majority of

females with the full mutation and normal intelli-

gence have learning disabilities relating to execu-

tive functioning deficits, leading to very poor

topic maintenance and tangential language.

In 1996 Madison et al studied the speech and

language of fragile X females with mild to moder-

ate mental retardation. They found the girls artic-

ulation was clear and they had no oral or speech

apraxia whereas, in the males, there is apraxia.

They had some hypernasal voices and were slowerthan normal on timed polysyllabic repetition tests.

Another study (Canales & Thompson, 1995) found

flighty attention style, perceptual distortions and

difficulty with story closures.

EvidenceI believe that the atypical language of individuals

with fragile X is partially caused by social anxiety

that is exacerbated or made worse by the social

demands of conversation, but is there evidence to

support this theory?

Anxiety in children is very difficult to diagnose as

the child doesnt know what youre asking and, at

present, many assessment tools are based on self-

report. However, studies examining children with

speech disturbances have shown the presence of anx-

iety symptoms such as specific fears, social withdraw-

al, self-consciousness and sleep difficulties. Anxiety

may cause children to have word finding deficits.

They will sometimes interject their statements with

stereotypical words such as and, somewhere,

somehow. You also hear a lot of perseveration

while the child is busy trying to find the word.

Repetitive language is very common in individuals

with fragile X - and researchers have found a cor-

relation between repetitive language and anxiety.

Boomer & Dittman (1964) found that the produc-

tion of filled pauses (ah and unnecessary word

repetition) was significantly increased when the

Its very important

to foster

relationships with

typical peers

and to get the

child involved in

mainstream

activities while

being

understanding

about the anxiety.Ross, who has FragileX syndrome, with

his younger

brother Stuart.

See Winter 00

speechmag,

www.speechmag.com


8/32

Box 1 - Ideas for intervention from Catherine Taylor

Fragile X is only one part of a complex picture of a unique personality. An intervention programme will necessarily beindividualised to suit each child, their interests and level of skills. It will also need to be fully integrated into bothschool and home life. Therapists, teachers and families must work together to guide the affected child towards themost appropriate and effective means of self-expression. New skills and concepts can be introduced in 1:1 sessionsbut these will need to be regularly practised and reinforced in natural social contexts.

Social anxiety Lower anxiety levels - for example, sit beside the child rather than opposite him to lessen the intensity of direct

eye-contact. Rehearse and role-play real-life social situations. Gradually move from small group to large group work. Teach the child to monitor their own anxiety levels and to use their most appropriate and effective means of calming

down (eg. fidget toy, music and rhythmic movement, chewing a piece of plastic tubing, getting up and walkingabout, opening/closing door.)

Develop self-esteem, sense of individuality and achievement by using visual, verbal and tangible remindersof interests and enjoyable experiences.

Poor attention Imitation games building from individual actions to series of actions. Self-occupation programme in which the childs baseline for engaging in play is gradually and systematically

extended. Turn-taking activities. Use of attention and memory aids (pictures and symbols, visual timetables and reminders of set tasks -

TEACCH visual structure).

Systematically increasing auditory memory - information-carrying word level. Augmenting speech with signing.

Oral-motor skills Oral-motor exercises - chewing (food of variable textures), blowing, resisted movement. Sensory integration therapy - deep pressure massage.

Receptive vocabulary Augmenting speech with gestures, signs, pictures, objects of reference. Teaching through play - explorative, pretend, symbolic, imaginative. Developing the childs own contextual inferencing skills by giving instructions within a structured,

contextually cued activity that incorporate new vocabulary but without specifically teaching that vocabulary. What Am I? (selecting by definition, listening to details.)

Expressive vocabulary Word association - listing words in a given category. Classifying groups of words according to their category. Finding the odd one out (eg. beetle, pigeon, spider). Sentence completion - agent action (eg. horses neigh, tigers ..., kangaroos hop, ants......). Describing objects or the position of objects as a barrier game. Utilising movement, rhythm, repetition and rhyme to anticipate words and phrases.

Social use of language Joint attention/action games (initially wholly child-centred - playing imitatively and responsively, but

gradually building up tolerance of intervention). Turn-taking. Picture or object exchange. Encouraging choice-making/initiation (providing forced alternatives for most occasions, assuming intentionality). Devising opportunities for the child to use specific language functions, eg. comments, requests. Unearthing the childs most socially appropriate means of communication and reinforcing and shaping this

repertoire. Modelling, rehearsing and social role-playing. Practising what has been learnt in one situation in a variety of others.

Cooperative group games and tasks.

Repetitive behaviour Recognising the role of anxiety and the childs limited repertoire of more appropriate communication. Giving consistent explanations to the anxious child (agreeing script with other carers, professionals). Focusing on teaching and reinforcing appropriate behaviours, rather than decreasing inappropriate ones. Anticipating and preparing for changes (visual time-line when possible.) Anticipating and preparing for unstructured transition times.



Catch upFragile X is the

most common

cause of inherited

learning disability.

Diagnosis is often

missed or delayed

due to the lack of

obvious physical

features. The

learning disability

can vary from mild

to severe, and a

significant minorityof affected

individuals can also

have autism. The

existence of Fragile

X Syndrome was

only acknowledged

around twenty

years ago. Thegene which causes

it was discovered in

1991.

Resources PECS - Pyramid Educational Consultants UK Ltd, 17 Prince Albert Street, Brighton, BN1 1HF. TEACCH - Division TEACCH, Administration and Research, CB 7180 310, Medical School, Wing East, University of North

Carolina at Chapel Hill, North Carolina, 27599 - 7180, USA. For a National Autistic Society fact sheet, tel. 0207 833 2299.

Catherine Taylor is a specialist speech and language therapist in the Child Mental Health Learning Disability Service at StGeorges Hospital in London.


9/32

them for transitions. Many of the children, even if

they are tactilely defensive, respond. Sometimes

they like weighted blankets or weighted vests

because they make them feel centered. Heavy

work can include pushing, pulling, lifting, carrying

books, even kneading dough and stirring breadmixes. Pushing a full trolley at the supermarket

will help a child calm down, as will stacking chairs,

vacuuming and sweeping up. Such activities also

have the advantage of helping the child to feel

useful.

More therapy ideas from Catherine Taylor are in

box 1. Unfortunately, there hasnt been a lot of

good research done on intervention and in many

ways we fly by the seat of our pants. However, by

understanding the anxiety behind much of the

communication behaviours of individuals with

fragile X - and demanding the best from them - we

can make a good start.

Dr Vicki Sudhalter is head of the clinical psycholin-

guistics laboratory at the Institute for Basic

Research in Developmental Disabilities, Staten

Island, New York, e-mail [email protected]

ReferencesBelser, R.C., & Sudhalter, V. (1995) Arousal difficul-

ties in males with Fragile X Syndrome: A

Preliminary Report.

Developmental Brain

Dysfunction 8: 270-279.

Belser, R. & Sudhalter, V. (in

press) Conversational

Characteristics of Children

with Fragile X Syndrome:Repetitive Speech. American

Journal of Mental

Retardation.

Boomer, D.S. & Dittman, A.T.

(1964) Speech rate, filled

pause, and body movement

in interviews. Journal of

Nervous and Mental Disease

139: 324-327.

Canales, D.N. & Thompson,

N.M. (1995) Communication

deviance in females with

fragile X syndrome.

Presented at the 23rd Annual Meeting of theInternational Neuropsychological Society, Seattle

Washington.

Madison, L.S., George, C. & Moeschler, J.B. (1986)

Cognitive functioning in the fragile-X syndrome: A

study of intellectual, memory and communication

skills.J of Mental Deficiency Research 30:129-148.

Sudhalter, V. & Belser, R. (under review)

Conversational Characteristics of Children with

Fragile X Syndrome: Tangential Language.

The Fragile X Society is at 53 Winchelsea Lane,

Hastings, East Sussex TN35 4LG, tel. 01424

813147, www.fragilex.org.uk



Our preliminary data do suggest that males with

fragile X experience greater arousal during the

conversation in which eye contact is maintained

than when it is not. In addition, the linguistic

results reveal that the fragile X males produce

more atypical language during the conversationin which eye contact is maintained. The absence

of these effects in the subjects with Down

Syndrome and Attention Deficit Hyperactivity

Disorder indicate that these results are specific to

individuals with Fragile X Syndrome.

SocialSo, what does this mean for intervention? Its very

important, when at all possible, to foster relation-

ships with typical peers and to get the child

involved in mainstream activities while being

understanding about the anxiety. I cannot

emphasise that enough because

(a) its good for typically developing kids to

develop, early in life, compassion and

understanding

(b) children with fragile X are very social and

want friends

(c) children with fragile X are exceptionally good

mimics and we want them to mimic the good

behaviours.

Materials and methods used should feature real

life events whenever possible

so the child can relate to them

and feel happy - an important

part of therapy - and unfamil-

iar words, concepts and rela-

tionships should be intro-

duced in at least 10 familiarsituations. Impulse control via

a wait programme is an

important therapy target.

We want to provide the

child with an understanding

of their own arousal systems,

and help them build up ways

of calming themselves, such as

deep breathing. Quiet time in

a small, comfy place needs to

be taught, valued and prac-

tised as a life skill in every

environment. It is useful to

provide fidget toys and orally

stimulating chews such as licorice, gum or aquari-

um tubing and things to look at such as books.

Most of the children love music and it calms and

focuses them. Soothing background music can

help them to concentrate on a task or play. Let

music be part of daily routine and provide oppor-

tunities for calming, rhythmic movement; for

example, sitting on a rocking chair, going on the

swings in the park, riding a bike.

Occupational therapy is very valuable to chil-

dren with fragile X, particularly when sensory

integration techniques are used to help the child

cope with hyperarousal. Deep pressure, which

involves putting pressure on muscles and joints, is

particularly useful to calm children and prepare

news extra..news extra..

Regulation callThe Consumers Association has called for action

to improve the regulation of health professionals.

In its consultation paper it claims regulatory bod-

ies have consistently served the interests of health

professionals over consumers. Further, it says the

separate bodies - with their different approachesto standards, codes of ethics, disciplinary procedures

and the appointment of lay representatives -

accentuate professional differences and do noth-

ing to encourage multidisciplinary working. The

Association wants legislation introduced to control

invasive procedures not currently regulated, the

devolution of disciplinary processes to a regional

level and a better definition for the role of lay

representatives.

The Association wants one statutory organisation

to hold all professional health bodies to account

for their performance. It concludes A single over-

arching body with a lay chair and lay majority

could create more consistency and ensure that the

patients interest is at the heart of the process.

Regulation of health care professionals from the

Consumers Association, tel. 020 7770 7000.

Guidelines for teachers of deafpupilsThe first three in a series of nine Education

Guidelines to provide practical support for teach-

ers and learning support assistants working with

deaf pupils have been published.

The Royal National Institute for Deaf People has

released Guidelines for mainstream teachers with deaf

pupils in their class, Using residual hearing effectively

and Effective inclusion of deaf pupils in mainstream

schools. They have been developed to address the

needs of pupils using auditory-oral approaches and

those using sign communication to support spoken

and written English. They cover the use of hearing

aids, cochlear implant devices and other amplification

systems, differentiation of the curriculum, all degrees

of hearing loss and practical advice on lesson delivery.

The British Association of Teachers of the Deaf has

been among those actively involved with the planning

and development of the guidelines project.

www.rnid.org.uk

Name change brings resultsA charity name change has been credited with rais-

ing awareness of the needs of people with aphasia.

Since Action for Dysphasic Adults became

Speakability membership has increased by 21 per

cent. There has also been an increase in the number

of self help groups and the organisations training

programme is being developed. The new name

reflects an agreement to use aphasia rather than

dysphasia to describe the condition and the need

to have a name that is meaningful to people and

set positively in a disability context.

The charity is now a member of Language Line, a

service which provides interpreters in over 100

languages via the telephone. Call the helpline to

set up the call.

Speakability Helpline 080 8808 9572.

ReflectionsDo I prepare clients

sufficiently for

transitions?Do I recognise that

diagnosis can besignificant inunderstandingcommunication andhow best to intervene?

Do I structure therapyso anxious clientshave the opportunityto calm down?


10/32

Speech and language therapists often despair at educational expectations for

children who are unable even to sit and listen. But such core skills and literacy

attainment can be improved at the same time, as the early findings of a new

phonological awareness programme demonstrate.Angela Hurdand Diana McQueen

explain how the germ of an idea incorporating the principles of prevention,

intervention and collaboration became a reality.

The rightthings at

the right time

health promotion


revention, intervention, collaboration.

Yes - yawn, yawn - weve heard it all

before. We all try to make a real and

lasting difference to our children yet,

whilst easy to say, it is incredibly hard

to achieve. In an inner city borough in

the West Midlands we set out to go beyond the

rhetoric.

What do the buzz words really mean?

PreventionFew would disagree that the speech and lan-

guage therapists role in health promotion is cru-

cial (RCSLT, 1996). This is also implicit in the Code

of Practice (1994), but all too often our tradition-

al framework allows insufficient time for us to

step off and really address the issues.

Intervention

This is familiar territory and what we are all doing

- sometimes against the odds.

Collaboration

Its easy to know we should be working together

in partnership with other agencies, but again

much more difficult to put into practice.

We are constantly reminded of the sense of

these principles in a top down way through

Government initiatives and strategies, from our

own professional body and, importantly, from the

recent Green Paper Excellence for all children.

Also, pockets of good practice on a small or

Read this if you believe prevention

is better than cure want to work with

other professionals are trying to

implement nationalpolicy

Plocalised scale illustrate bottom up the value of

embracing those philosophies and trying to make

them a reality.

PerseveranceWe have long been advocates of prevention,

intervention and collaboration, but often felt we

were running up the hill in treacle. Then, in the

right place at the right time for once, we had the

germ of an idea. Support, money and dogged per-

severance enabled us to try out a hypothesis and

stringently measure the results - something we

had aspired to in principle but never had the

chance to do in practice.

The Sandwell Accelerated Language Initiative is

a structured programme delivered to small

groups of no more than 10 children of nursery age

for about twenty minutes on a daily basis over 100

days in total. The programme is taught by trained

nursery teachers and nursery nurses who are com-

mitted to trying to improve the childrens skills

before they go into school.

Sandwell has consistently performed very poor-

ly on the Standard Assessment Tests (SATS) and has

been almost bottom of the league tables every

time. It is a typical inner city borough with a pop-

ulation of some 300,000 tightly packed in approx-

imately 12 square miles. There is a high incidence

of special educational need, many socio-economic

problems and a large proportion of minority eth-

nic families.

Many children do not enjoy the benefits of

preschool experience within the home which the

current educational system seems to assume, so are

ill prepared for the challenge of the National

Curriculum. Comparing notes with a colleague,

educational psychologist Bob Boucher, we found

that large numbers of our children enter nursery

socially unprepared, scarcely able to put two words

together and with few self-help skills. Yet, within a

year or so, they are expected to have achieved a

number of desirable outcomes and be ready to

access the National Curriculum with all it entails.

Our thinking was reinforced by the television

programme, Dispatches - too much, too soon

(1998), which (unfavourably) compared the for-

mality of the UK infant curriculum and the more

informal core skills orientated approaches in

Europe.

More and more is being demanded of nursery

children with little account of the fact that it is

hard to hurry nature. Dispatches showed that, far

from being disadvantaged by their curriculum, our

European neighbours actually acquire reading

and writing skills more quickly and easily than the

British children, even though they are formally

introduced to them much later when they are

deemed to have reached a stage of readiness.



health promotion

FoundationsThis led us to think more deeply about what we

were actually expecting children to do and how

they could possibly meet these levels. Surely lan-

guage skills should be adequate before children

can be expected to tackle the NationalCurriculum? Is enough attention paid to input?

Are certain core skills necessary for language

learning or, indeed, any kind of learning? If so,

are these actively taught or do we assume that

they are already in place? The establishment

response to children who are failing is to give

them more of the same. Yet it may not be so much

a question of too much too soon as the wrong

things at the wrong time. To use a simple analo-

gy: would you seriously consider buying a house

that was built on insecure foundations?

Faced with these critical questions, we were still

left with the dilemma of how we could actually

make a difference and how could we better theSATS results? We had to improve literacy, but the

children were already getting early literacy

instruction and failing.

We thought the key issue was improving the

language skills of the children. This turned out to

be a mammoth undertaking, even at the planning

stage. We then had to decide which particular

area might have the biggest impact. We wanted

to choose one that:

a) is not currently addressed comprehensively in

the nursery curriculum and

b) would have the most significant impact in a

realistic amount of time.

The answer was phonological awareness.

As speech and language therapists we have defi-nite skills in this area. Catts (1991) identified a crit-

ical role with normally developing children in

putting to good use our unique understanding of

the processes involved. In an earlier study (Kamhi

and Catts, 1989) he also noted that poor phono-

logical skills have a lifelong effect. It is an area

highly correlated with the development of literacy

in the absence of formal literacy teaching. Layton

and Deeny (1996) stress the centrality of phono-

logical awareness to the development of efficient

written language skills. A number of studies assert

that certain phonological skills precede and sup-

port literacy (Bowey and Francis, 1991; Bradley and

Bryant, 1983; Goswami and Bryant, 1990; Huxford,1995; Mann, 1986; Wimmer, 1991). The central

focus of the threads running through the studies

appears to be rhyming and alliteration skills and

their link to other segmentation skills, and how

they then relate to each other and to the acquisi-

tion of literacy.

Bryant et al (1990) in a longitudinal study point-

ed out that sensitivity to rhyming and alliteration

are developmental precusors of phoneme detec-

tion. This is clearly related to reading and

spelling. Rhyming was also found to be critical by

Huxford (1995) whereas Ball and Blackman (1991)

carried out a similar study to us. They looked at

phonemic segmentation training and found that,

when nursery aged children followed a training

programme, early reading and spelling skills were

significantly improved. Competence here has

been frequently identified in the literature as

heavily influencing successful literacy acquisition.

We wanted to know if intervention on phonolog-

ical awareness would actually improve it.

RigorousOne crucial area was money. Bob Boucher found

available funds through his manager from TheTipton Challenge. We needed to set up the exper-

iment properly because, unless we were rigorous,

we wouldnt know if any gains made were attrib-

utable to the programme or not.

Two parallel channels of activity followed; plan-

ning the experiment and writing the programme.

Four nursery schools in Tipton were recruited,

each with an experimental group and a control

group. Two further control groups were selected

from unconnected nurseries to counteract potential

contamination. The populations were matched

for age and sex and also on pre-programme test-

ing. We used a test of verbal comprehension

(RDLS), a non verbal test (picture similarities from

the British Ability Scales) and a test of phonologi-

cal awareness devised for the purposes of the

experiment. Simple checklists of core skills were

written for the nursery staff to complete. A training

package was written and all the staff in the exper-

imental nurseries trained in the background to the

programme, its aims and how to deliver it. This

worked out as two days before it started and three

half days delivered as it progressed. Staff cover

costs were met by the Tipton Challenge Fund and

basic materials for carrying out the programme

were provided for the nurseries.

Testing took place in the first half of the Autumn

term 1998 and the programme began in

November. We were indebted to the psychology

large numbers of our

children enter nursery

socially unprepared,

scarcely able to put two

words together and withfew self-help skills.

department further for the loan of four students

who were on a one year placement in Sandwell.

They were trained by us but had lots of extra skills

that they willingly gave, particularly in the area of

data collection and statistical analysis.

All the children were subsequently re-assessedon the phonological awareness test following the

half-term holiday 1999, after 75 days of the pro-

gramme had been delivered.

Writing the programme was done from scratch

during the spring and summer of 1998. Various

adjustments were made following feedback from

the staff involved.

Written from a speech and language therapy per-

spective rather than a teaching one, the Sandwell

Accelerated Language Initiative philosophy:

1. follows the developmental sequence of skill

acquisition rather than where the child should

be according to their age. It tries to bridge the

gap between the natural skill levels of many

children entering reception and the expectations

of the curriculum. It reinforces the theory of a

literacy continuum, with the potential to begin

in nursery and carry over into reception to join

seamlessly with the National Literacy Hour as

children are ready.

2. recognises both genetic and environmental

contributions to learning; even the less able

children can benefit providing the task is

pitched appropriately.

3. focuses almost entirely on the input loop; children

are judged on what they can understand and

demonstrate rather than on what they can say.

4. believes that core skills must be in place before

learning can take place; for example, anyprogramme is doomed to failure if the children

cannot sit and listen. It may help us gain greater

acceptance that attention and listening are

learnedskills and the cornerstone of all future

learning.

5. teaches those core skills which are taught so

rarely, and in a structured way.

6. teaches the linguistic concepts associated with

phonological awareness; some children may fail

to develop phonological awareness because

they dont understand the language used to

teach it. Visual referents mean less able children

have something concrete and tangible to support

their understanding of words like rhyme.

7. takes proven speech and language therapy

interventions (for example, sequencing and

discrimination skills) and uses them as a

preventative measure before the child begins to fail.

8. like all learning opportunities should be, it is

multisensory.

Days 1 - 40 cover the foundations: core skills, lin-

guistic skills, introduction to phoneme grapheme

correspondence (see figure 1 - days 12 and 25).

Days 41 onwards look at phonological awareness

components, continuing phoneme to grapheme

correspondence and work building on the foun-

dation skills (see figure 2 - day 64). The idea is that

the Sandwell Accelerated Language Initiative is a

tool box; the child takes a tool out and uses it in a

As one child has a turn,the others demonstrategood sitting.


12/32

health promotion


given situation. Ultimately, the child takes several

tools out of the box and uses them in combination

to perform a variety of different tasks. This is what

we expect a child to do when they begin to read:

recognise, sequence, combine, manipulate and

analyse sounds both in terms of quality and position.

UnderstandingIn many ways, the Sandwell AcceleratedLanguage Initiative isnt different from other,

commercially available programmes. However, it

identifies the bottom rung of the ladder and

climbs gradually, rather than assuming that

chronological age equals certain levels of experi-

ence. It asks What skills do children need in place

before they can access the phonological aware-

ness part of the programme? (core and linguistic

skills). Also, staff are trained so they have owner-

ship and understanding.

During the staff training, time is spent talking

about how children learn and the significance of

gesture, intonation, facial expression, repetition

and slow, easy speech with frequent pauses.

Important parts are a revision of the developmen-

tal norms for the acquisition of speech and lan-

guage and learning about phonological aware-

ness and the sophisticated level of skills involved -

with the reminder that many of these are entirely

accessible to the average four year old. These two

things serve to raise expectations about what chil-

dren could/should be doing, set within the con-

text of what teachers know their children can

actuallydo. This helps support the case for attempt-

ing the slightly different focus that the programme

offers. The project has revealed a wealth of inter-

esting information around teacher expectations,

ranging from specific targets such as know colours

(our children will do that) to the simple develop-

mental skill of posting three items in a sequence

(our children wont be able to do that).

The Sandwell Accelerated Language Initiative is

a longitudinal study. Outcomes will be measured

in the following ways:

1) Post programme phonological awareness

re-assessment.2) Post programme core skills check list.

3) Reception entry core skills check list.

4) PIPS (Performance Indicators in Primary

Schools) in Reception.

5) Sandwell Child Psychology Service Assessments.

6) Key Stage 1 SATS.

7) Year 3 reading sweep.

Although the overall aim is to look at reading

skills in both groups, we are eager to find out

whether there are other observational and/or sig-

nificant differences. Maybe the experimental chil-

dren will actually be worse than the controls in

some areas because another other area of the

nursery curriculum has to be dropped to make

way for the programme?

The programme also provides the opportunity

to screen for at risk children - those children who

receive it but do not show significant gain in

phonological awareness at the end of nursery - so

that speech and language therapy resources can

be more effectively targeted.

ExcitingAt the time of writing, the post-programme

phonological awareness re-assessment results

were available (figure 3). Whilst all three groups

performed better on re-assessment, the experi-

mental group performed approximately two and

a half times better. This was very exciting. It by no

means indicates that they will be ultimately be

better readers but, at this stage, they certainly

have much better phonological awareness skills

than the other two groups.

In addition anecdotal information and informal

feedback has been gathered, and key points indi-

cate almost all of the children were able to partici-

pate in and benefit from the programme. The all-round gains children made from being able to sit

and listen were a consistent and positive observa-

tion. In some cases, nursery and reception staff

have adopted these principles on a class wide basis.

The programme is being replicated in the

Smethwick area of Sandwell, where the issue of

English Second Language speakers is of particular

interest. We have also had the opportunity to

measure potential change in children identified at

the outset of the project as having speech output

problems and this work will be written up sepa-

rately. As with all things, whether it continues or

not is a financial issue. The results are, however,

very encouraging so far.

The Sandwell Accelerated Language Initiative

has been our attempt to answer a functional

question in a functional manner. We welcomed

the idea as therapists to be experimentally rigor-

ous about things that felt right, and we would

urge all our colleagues to do some research - it

really isnt that bad.

We have learned a lot from all aspects of the

project but particularly that, to be successful,

working together needs a lot more than support-

ive individuals. We were surprised at how differ-

ent we were from the teachers in our underlying

belief systems and these had to be unpacked and

shared first before collaborative working and

agreed expectations were possible.

The all-round gains children

made from being able to sit and

listen were a consistent and

positive observation.

Figure 1 - days 12 and 25

DAY 12LEARNING OUTCOMES children will maintain and identify good listeninga) children will recall two unseen items in a sequence using

a visual referentb) children will identify and name beginningc) children will clap out the names of objects pulled out of

a box with one and two syllablesd) children will find and say b - m - s - t

MATERIALS box of random objects picture cards of objects (supplied) box of objects with one and two syllables letter sound cards b - m - s - t

DAY 25LEARNING OUTCOMES Identify and demonstrate good listeninga) Identify same versus different sounds from a choice

- visually (matching)- auditorily (listening)

b) Identify silly versus sensible words from a choice of 2c) Name the sound that pops upd) Recall a series of 2/3 pictures in sequence (unseen)

MATERIALS same / different visual referents letter sounds cards (2 of each) silly / sensible visual referents silly / sensible word lists picture cards bricks


13/32

of reading experience. Cognition 24, 64-92.

Royal College of Speech & Language Therapists

(1996) Communicating Quality 2.

Wimmer, H.K., Landerl, R., Linortner & Hummer, P.

(1991) The relationship of phonemic awareness and

reading acquisition: More consequence than pre-

condition but still important. Cognition 40, 219-249.

ResourcesEdwards, S., Fletcher, P., Garman, M., Hughes, A.,

Letts, C. and Sinka, I. (1997) Reynell Developmental

Language Scales III. NFER-Nelson.

Elliot, C. (1996) British Ability Scales II. NFER-Nelson.

AcknowledgementsWe would like to thank all the children and nursery

staff involved in the project and the Tipton

Challenge Fund for the financial support.

Catts, H.W. (1991) Early identification of reading

disabilities. Topics in Language Disorders 12, 1-16.

Department of Education (1994) Code of Practice

on the identification and assessment of special

educational needs. London:HMSO.

Department for Employment and Education

(1997) Excellence for all Children - Meeting

Special Educational Needs. London:HMSO.Goswami, U. & Bryant, P.E. (1990) Phonological skills and

learning to read. Hove: Lawrence Erlbaum Associates.

Huxford, L. (1995) Teaching a phonemic strategy for

reading: implications for research. Dyslexia 1, 96-107.

Kamhi, A. & Catts, H. (1989) Reading disabilities - a devel-

opmental perspective. Boston. Little Brown and Co.

Layton, L. & Deeny, K. (1996) Promoting phono-

logical awareness in preschool children. In

Snowling, M. and Stackhouse, J. (1996) Dyslexia

speech and language. Whurr.

Mann, V.A. (1986) Phonological awareness; the role

Angela Hurd is a senior lecturer at the University

of Central England. Both she and Diana McQueen

are practising clinicians.

ReferencesBall, E.W. & Blachman, B.A. (1991) Does phoneme

awareness training in kindergarten make a differ-

ence in early word recognition and developmentallearning? Reading Research Quarterly26-49-66.

Bowey, J.A. & Francis (1991) Phonological analysis

as a function of age and exposure to reading

instruction.Applied Psycholinguistics 22, 91-121.

Bradley, L. & Bryant, P.E. (1983) Categorising

sounds and learning to read - a causal connection.

Nature 301, 419-421.

Bryant, P.E., Maclean, M., Bradley, I. & Crossland, J.

(1990) Rhyme and alliteration and phoneme

detection and learning to read. Developmental

Psychology26, 429 - 38.


health promotion

Intensive programme rolls outA groundbreaking intensive, integrated early intervention programme for children

with communication difficulties is being extended across the UK.

The second of I CANs Early Years Centres of Excellence has been officially opened in

Liverpool. There is already a centre in Brighton and a further three in Chessington,

Salisbury and Ballynahinch are at an early stage. The Early Years Programme aims to

reduce the numbers of children starting school with severe and complex speech and

language difficulties, and to enable those who do enter school with these difficulties

to be successful. Through skill sharing, improving standards and raising awareness,

I CAN hopes to reach even more children.

The charity plans to have 20 such centres, at least one per UK region, open by 2003,

in partnership with local health and education authorities. It also wants to develop

a nationwide accreditation scheme and complete a major evaluation study.

I CAN, tel. 0870 010 40 66.

news extra..news extra..news extra..news extra..news extra..news extra..

Figure 2 - day 64

DAY 64LEARNING OUTCOMES Good listeninga) As a group name the sound that pops up [ones you will use for the next activity].b) Give each child an item / picture. Encourage child to name it. In turn names their item/ picture

and finds the beginning sound (from a choice of 6). Place sound in correct place on train andleave item in a pile.

c) In turn, children select a beginning letter sound from the train and find corresponding item/picture from the pile.

d) If time: teacher asks whos got the _____? (item/picture name) It begins with ... child to saythe letter sound and post it.

e Familiar nursery rhyme.

MATERIALS letter sound cards train items / pictures for onsets post box

Figure 3 PRE AND POST PHONOLOGICAL SCORES

Reflections Do I use both national guidelines and local experience to

improve my practice? Do I identify the bottom rung on the ladder so a clients

progress can be facilitated and measured? Do I take account of underlying belief systems before

embarking on collaborative ventures?

Club for parentsThe needs of the parents of newly diagnosed deaf babies for support and

information are being addressed through an innovative club.

The First Wednesday Club at The Speech, Language and Hearing Centre in

London will guide parents in the development of early listening skills and

communication through play. Specific information such as how to read an

audiogram and respecting different ways of communicating will be includ-

ed. The club will also give parents the opportunity to share their feelings

after diagnosis with others in the same position.

The centre has been open for five years. It provides a nursery school setting and

therapy for babies and children under 5 who have hearing impairment or speech

and language delay. For those unable to attend the centre, a Far Reach for Families

programme is offered.

www.speech-lang.org.uk


14/32

in my experience


InsightThe results of a questionnaire I sent before training

in the use of a screen for swallowing difficulties in

stroke (Bowles, 1999) give an insight into why such

training will not be fully effective without improved

leadership. It was completed by 110

qualified nurses from all grades across

the acute and community trusts, includ-

ing the 46 who finished the course and

the 17 who didnt.

Eighty five per cent of respondents

said nurses should screen for dyspha-

gia. Although the response is positive,

lack of take-up of training is frequent-

ly experienced (in this case, 28 per cent

of candidates did not complete the

course. In another trust, an in-house

speech and language therapy short

training programme for nurses,

requested by nursing management,

had 100 per cent non-attendance.)

Pressure of work is the most common-

ly given reason but informal discussion revealed: a feeling that screening of dysphagia is not

their role

a difficulty with ethical aspects such as

alternative feeding

fears about competency

low morale (why should we do even more, we

are not paid enough)

a perception that training off the ward is a

soft option

agency nurses are not allowed to attend training.

The Chief Medical Officers review of continuing

Professional Development in General Practice

(1998) found education was often wrongly tar-

geted. Nurses receive their training in different

ways. Some have very formal academic education

at a degree level. Others are trained via a diplo-

ma with off and on ward training. There are

older nurses who have received almost wholly

practical training. There is a need to study the

context of learning, the needs of those who are

being taught, their practice and learning methods

and the interaction between these. The results of

the questionnaire reflect the types of training

nurses receive and preference (figure 3) may be

based on experience.

To become skilled in a particular procedure a cer-

tain level of practice is necessary. However, in the

case of nurses using a dysphagia screen, there is no

guidance on how many patients they should see

or some patients, improved recovery

from stroke depends on earlier detec-

tion of dysphagia. Training nurses to

use a screening protocol may well pro-

mote this (figure 1), but success

depends on the right

nurses being appropriately and

effectively trained. Clinical gover-

nance, continuing professionaldevelopment, the commitment to

evidence based practice and clini-

cal audit all highlight the need for

- and to some extent support - the

training of nurses by speech and

language therapists. What might

be missing, though, is leadership.

A UKCC Position Statement

(1992) on nursing education states

that foundation education alone

cannot effectively meet the

changing and complex demands

of the range of modern health

care. It goes on to note that there is a broad rangeof post registration provision, but education with-

in the broader multidisciplinary team is not dis-

cussed. Communicating Quality 2 (1996) recognis-

es the need for speech and language therapists to

train others such as carers to carry out therapeutic

procedures; responsibility remains with the thera-

pist. However, it does not adequately address

across professional boundary education where

roles may become blurred.

In training nurses to use a screen to detect dys-

phagia, certain health risks might occur if the

screen is not adequately performed since the

patient may never be referred to speech and lan-

guage therapy. Are nurses being expected to take

on a new professional responsibility? Should

speech and language therapists teaching these

skills have proven competency in the field; both

in dysphagia management and in teaching?

Should Trusts ensure that change of practice is

recognised within their insurance policies?

In view of the limited published information on the

training of the multidisciplinary team in the man-

agement of dysphagia, a national survey of speech

and language therapy departments would be useful.

Differences in training protocols (Crockford &

Smithard, 1997; Dangerfield & Sullivan, 1999; Davies,

1999; Herbert, 1996; Bradley & Tomlinson, 1995;

Gravill, 1999; Bowles, 1999) and informal discussions

with other departments raise questions (figure 2).

FThe needfor leadership

Should speech and

language therapiststeaching these skills

have proven

competency in the

field; both in

dysphagia

management and

in teaching?

Do we make too many

assumptions about our

own and other professions

when we offer and develop

training? Helena Bowles

experience of nurse

training in dysphagia

screening leads her to call

for change at a strategic

level to improve the

effectiveness of

cross-professional

training.

Read this if you:

are involved in training

other professionals

are interested in

issues of competency

have a strategic role



before being considered competent. In this study,

25 per cent saw less than one patient per month.

In the six week period between the initial training

and the consolidation day, nearly half of the can-

didates had not carried out the screening proce-

dure. And, although 88 per cent of the candidates

felt confident to use the screen, concerns regard-

ing measurement and recognition of competency

were raised by some and by nursing management.

Different focusIs a targeted level of training needed to reflect

exposure to the patient group? For example,

some departments train specialist dysphagia nurs-

es. Perhaps there should be a different focus for

nurses who rarely see stroke patients; for exam-

ple, dysphagia awareness and knowledge of

referral procedures. The care environment of the

designated patient population and the nurses

exposure to it has enormous implications for

training. There is a clear need for careful audit of

training needs. Where are the patients, which

nurses should be trained and to what level?

Most candidates thought training should be

recognised in some way. Many felt CATS (Credit

Accumulation Transfer Scheme) points would be

appropriate - although a significant number dis-

agreed. This is a system whereby continuing pro-

fessional development can be recognised and incor-

porated in a further qualification, often a degree.

To qualify, a course has to be evaluated and accred-

ited and a considerable financial cost is involved.

The mechanisms for evaluation and accreditation

for training across professional boundaries (for

example, therapists training nurses) are not clear, if

indeed any mechanism actually exists.

Some countries, for example Australia, have

developed systems for re-accreditation and re-cer-

tification which reward participants for takingpart in continuing professional development, usu-

ally by awarding credits. The Chief Medical

Officer review (1998) considered non-credit bear-

ing learning should be recognised and valued.

The course was open to GPs and some would

have attended had it been recognised by Post

Graduate Education Allowance (PGEA). This sys-

tem, open to GPs only, carries with it financial

reward. It is the principle component of continu-

ing GP medical education and has been widely

encouraged. However, it is subject to much criti-

cism for failing to demonstrate any convincing

benefits for patient care through a resulting

change in practice (Chief Medical Officer, 1998).

PartnershipTraining nurses to use a swallow screen is not

straightforward. From anecdotal evidence and from

this programme there appears to be increased support

from nursing management. However, the problems

are multi-faceted in nature and not all can be resolved

at a local and/or uni-professional level. Differences in

the professions (figure 4) may militate against nurse

training unless they are recognised and managed.

These differences affect all kinds of cross-professional

training. They should be of concern to educational

consortia and supported by a programme of research

and development. There is a need for educational

establishments to work in partnership with the NHS

Figure 1 - Reasons for training nurses in screening for dysphagia

1. Early recognition of dysphagia positively affects outcome of stroke (Smithard et al, 1996).

2. Many doctors and nurses still use the gag reflex to assess swallow although it is not a safe

indicator of swallowing ability (Leder, 1997).

3. Patients may be cared for in a wider variety of settings - for example, home, nursing home,

day hospital - and may not have speedy access to speech and language therapy services.

4. Recognition of dysphagia may have implications for decisions regarding acute hospital

admission or discharge.

5. Recognition and management of dysphagia in a variety of settings may promote good recoveryfrom stroke. Failure to do this may result in a reduction of a patients ability to live independently.

6. The UKCC Nurse Code of Conduct clearly states that nurses are responsible for feeding

patients. In the light of evidence now available, and within a framework of clinical gover-

nance, nurses can no longer continue to feed patients who may be at risk due to dysphagia.

Figure 2 - Questions about training protocols

1. aimsIs the aim to teach the use of a screening tool, to be more aware of dysphagia generally, or to

be able to make management decisions regarding dietary modification, head positioning and

swallow techniques?

2. candidatesWho should be trained? Only certain grades of nurses? What level of previous experience and

exposure to the patient population is necessary? Should there be pre-requisites (for example,

attending dysphagia awareness before training in using a screening tool)

Speech & Language Therapy in Practice, Winter 2000

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Transcript of Speech & Language Therapy in Practice, Winter 2000