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ISSN 1368-2105

WINTER 2000

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Evidence-based practice
Fragile X

Health promotion
A programme for nurseries

Early intervention
Parent groups

In My Experience
Leadership

How I manage progressive neurological disorders

My Top Resources
AAC

Keeping people at home Collaboration with


district nurses
P R A C T I C E

P R E - E M P T I V E

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Winter 2000 speechmag
Penny Gravill and Aileen Hyland, speech and language therapists with Grampian University Hospitals NHS Trust, report on the 10th Augmentative Communication in Practice: Scotland Study Day.
Reprinted articles
Fragile What? - A parents perspective on Fragile X Syndrome. (Feb/Mar 1996, 5 (2))** Edel Tuckwood reflects on the effect her sons Fragile X diagnosis has had on her family and suggests ways speech and language therapists can help with this still little known condition. It pays to share our skills. (Sep 1989, 5 (4))* Jenny Jones explains how spreading the word about speech therapy in nurseries increases its effectiveness. Parent-based approaches - the case for language goals. (Summer 98)*** The trend in the field of child language is to focus on parent-child interaction therapy. Dr Deb Gibbard argues a more specific linguistic approach is also required when working through parents.
From Speech Therapy in Practice* / Human Communication**, courtesy of Hexagon Publishing, or from Speech & Language Therapy in Practice***

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Win Working with Voice Disorders
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 and photocopiable 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 governance 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, courtesy 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 winners will 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


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@blacksheeppress.co.uk. The closing date for receipt 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 catalogue which includes details of other new material.

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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 products will be reviewed in future issues.

Contents
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WINTER 2000
(publication date 27th November) ISSN 1368-2105 Published by: Avril Nicoll 33 Kinnear Square Laurencekirk AB30 1UL Tel/fax 01561 377415 e-mail: avrilnicoll@speechmag.com Production: Fiona Reid Fiona Reid Design Straitbraes Farm St. Cyrus Montrose Website design and maintenance: Nick Bowles Webcraft UK Ltd www.webcraft.co.uk Printing: Manor Creative 7 & 8, Edison Road Eastbourne East Sussex BN23 6PT Editor: Avril Nicoll RegMRCSLT Subscriptions and advertising: Tel / fax 01561 377415 Avril Nicoll 2000 Contents of Speech & Language Therapy in Practice reflect the views of the individual authors and not necessarily the views of the publisher. Publication of advertisements is not an endorsement of the advertiser or product or service offered. Any contributions may also appear on the magazines Internet site.

WINTER 2000
19 Reviews
CELF-PreschoolUK and Dont Hang Up - A training package.

Inside cover Winter 00 Speechmag Reader offers


Win Working with Voice Disorders and Black Sheep Press resources.

20 Parent groups
We 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.

2 News / Comment 4 Fragile X Syndrome


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. Avril Nicoll pulls together highlights from presentations by Dr Vicki Sudhalter to Fragile X Society Family Conferences, and Catherine Taylor provides extra ideas for intervention.

8 Working with nurseries


Support, 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.

24 How I manage progressive neurological disorders


Only 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.

12 In my experience
Communicating Quality 2 (1996) recognises the need for 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 crossprofessional training.

30 My Top Resources

Cover picture by Paul Reid. With thanks to District Nurse models and Grampian Primary Care NHS Trust. See page 16 Pressures, priorities and pre-emptive practice.

16 COVER STORY 15 Further Collaboration in the community reading


Parkinsons disease, child language, Turner syndrome, fluency, aphasia.

Some 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, Hermien Nieuwoudt, Debbie We aimed to address the early identification of patients in the Charles and Morwenna community with dysphagia by heightening district nurses awareLarkin all share an ness, thus improving professional links and knowledge of roles. interest in augmentative New initiatives strive both to keep people out of hospital for and alternative longer and discharge them more quickly. Jane Cantwells communication (AAC) and collaborative work with district nurses aims to improve timely meet regularly to discuss access to dysphagia services by people living at home. and develop their service.

IN FUTURE ISSUES
ADULTS WITH MILD TO MODERATE LEARNING DISABILITY EDUCATION NEURODISABILITY PHONOLOGY CHILD DEVELOPMENT MANAGEMENT
SPEECH & LANGUAGE THERAPY IN PRACTICE WINTER 2000

news

Dysphagia care criticised


Older people across Europe are suffering unnecessarily because health carers are failing to notice and diagnose their swallowing problems effectively. This conclusion followed a debate involving a cross-section of European health professionals 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.

Art for Parkinsons


The 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 relaxation, 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.

Teletherapy
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 also view 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 videoconferencing links.

Dementia developments
The need of minority ethnic groups for dementia services has been recognised 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 has found 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 quality 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 antiamyloid 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.

Employment rights
The 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 information 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, telephone 020 8983 1003 or see www.stammering.org (note new website address). The Helpline number is 0845 603 2001.

Charities restructure
The voluntary organisation for children and young people with speech and language 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, companies 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 national 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.

OT matters
Recent efforts to encourage people into a career in occupational therapy as the recruitment 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 environment 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.

SPEECH & LANGUAGE THERAPY IN PRACTICE

WINTER 2000

news & comment

TV opportunity
Do 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 sarahwalker@mavtv.fsnet.co.uk

Autism gateway
A free, non-commercial service aims to be the first port of call for anyone interested in finding up-todate 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 conference Autism 99, is co-sponsored by the National Autistic Society and The Shirley Foundation. To access the site: www.autismconnect.org
Avril Nicoll, Editor

...comment...
33 Kinnear Square Laurencekirk AB30 1UL

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. When Jane Cantwell offered 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 Bailey attribute 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 Hurd and 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 and language therapy and teaching professions. Collaborative working can only go ahead when this is understood and addressed. As Christine McCormick and 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.

tel/ansa/fax 01561 377415

Dysphagia on the web


An 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 professional 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

e-mail
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Sharing voice ideas


Experienced voice care practitioners are being invited 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.

Award increased
Winslows 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 project outside their place of work. Places such as underdeveloped countries where the work of the applicant is likely to have a significant impact are preferred. The company believes such projects also have huge benefits for the award recipients. Further information from Kate Boyes, tel. 01869 244644.

SPEECH & LANGUAGE THERAPY IN PRACTICE

WINTER 2000

research implications

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 Nicoll pulls together highlights from two full day presentations by Dr Sudhalter to Fragile X Society Family Conferences, and Catherine Taylor provides extra ideas for intervention.

Flying by the seat of our pants?


Additionally, hyperarousal and social anxiety are hy do individuals with fragcentral to Fragile X Syndrome. We have to be ile X communicate in the aroused during a conversation but individuals way they do, and how can with fragile X cant come back down to a comwe help them? fortable level, and this becomes aversive to the This question has been to extent that they cant carry on a coherent converthe fore during my research sation. This leads to further anxiety, even comover the past 14 years. I believe the key lies firstly plete shut down, and becomes a vicious cycle. in treating people with fragile X as individuals Simple eye contact is arousing. Although people with a social phobia. Secondly, we must raise our with fragile X are friendly and excited about meetexpectations. There is a mismatch between the ing people, they simply cannot cope with eye convocabulary / language capability of people with tact. Many of them have an overt fragile X and what it can appear to be in Children and turning away. Higher-functioning certain circumstances and it is up to us as individuals may look up, but not at speech and language therapists to find adults with ways of unlocking their potential. fragile X have your face. Contrary to normal practice with most clients, eye contact It is also important to know about the comshould be actively avoided in theramunication characteristics associated with tremendous for people with fragile X. Sit the syndrome so we can identify individuals difficulties with py alongside or behind the children, - for example among adults with learning and dont look at them or ask them disabilities - who may have fragile X. transitions. I to look at you; over time, you may Confirmation of the diagnosis points us in believe this be able to begin to ask if you can the direction of appropriate intervention. has to do with look at them. Surprising Additionally, many of the children Around three quarters of children with anticipatory will be so overwhelmed by other Fragile X Syndrome have behaviours consis- anxiety. sensations that they will hide away. tent with attention deficit hyperactivity disThey will not be able to tolerate order: inattention, poor organisation, distractibilcertain textures, lights, sounds, foods or smells. ity, fidgeting and impulsivity. Yet, although they We used to think that hand biting on the foremay seem not to listen, and to be forgetful of finger or thumb was almost diagnostic of fragile daily tasks, it is surprising how often they rememX, and is another signal of anxiety meaning get ber exactly what has been said or what they have out of my face. Rocking is another non-verbal been told will happen - particularly if it is imporbehaviour seen in a lot of children in an uncomtant to them. fortable situation. Another form of excitement is

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

SPEECH & LANGUAGE THERAPY IN PRACTICE WINTER 2000

research implications

Ross, who has Fragile X syndrome, with his younger brother Stuart. See Winter 00 speechmag, www.speechmag.com

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.

Anticipatory
Children and adults with fragile X have tremendous 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 normally 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 perseverative language whereas this behaviour is not seen consistently in the children who are making some protein. Perseveration is found both in verbal and nonverbal behaviours.

When we look at the young prepubertal 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 any protein 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 perseveration that are present in young children continue - and perhaps even get worse as they get older. Females with fragile X, even those with the premutation, 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 experience difficulties with transition and may also have impulsive behaviour. They have classic maths problems. 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 intelligence have learning disabilities relating to executive 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 moderate mental retardation. They found the girls articulation was clear and they had no oral or speech apraxia whereas, in the males, there is apraxia. They had some hypernasal voices and were slower than normal on timed polysyllabic repetition tests. Another study (Canales & Thompson, 1995) found flighty attention style, perceptual distortions and difficulty with story closures.

Its very important to foster relationships with typical peers and to get the child involved in mainstream activities while being understanding about the anxiety.

Evidence
I 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 selfreport. However, studies examining children with speech disturbances have shown the presence of anxiety symptoms such as specific fears, social withdrawal, 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 correlation between repetitive language and anxiety. Boomer & Dittman (1964) found that the production of filled pauses (ah and unnecessary word repetition) was significantly increased when the

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 production of immediate repetitions of a whole word or part of a word in conversation (Belser & Sudhalter, in press). The study group comprised 10 individuals with fragile X, 10 with autistic disorder, 10 with developmental delay not caused by fragile X, and 10 normally developing children. To investigate the role of conversational context, the conversations 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 output, while no individuals with non-fragile X learning 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 different 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 maintenance. 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 language 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 sympathetic nervous system. Skin conductance level is generally regarded as an indirect indicator of sympathetic nervous system activity, and is often used as a measure of relative level of autonomic arousal. We examined the relative differences in skin conduction level and linguistic error production between two conditions; one where eye contact was maintained and one where it was not.

SPEECH & LANGUAGE THERAPY IN PRACTICE WINTER 2000

research implications

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 be individualised to suit each child, their interests and level of skills. It will also need to be fully integrated into both school and home life. Therapists, teachers and families must work together to guide the affected child towards the most appropriate and effective means of self-expression. New skills and concepts can be introduced in 1:1 sessions but 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 walking about, opening/closing door.) Develop self-esteem, sense of individuality and achievement by using visual, verbal and tangible reminders of interests and enjoyable experiences.

Catch up

Fragile 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 minority of affected individuals can also have autism. The existence of Fragile X Syndrome was only acknowledged around twenty years ago. The gene which causes it was discovered in 1991.

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.

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 St Georges Hospital in London.

SPEECH & LANGUAGE THERAPY IN PRACTICE WINTER 2000

research implications

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Regulation call
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 conversation in 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. 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 bread mixes. 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. The Consumers Association has called for action to improve the regulation of health professionals. In its consultation paper it claims regulatory bodies have consistently served the interests of health professionals over consumers. Further, it says the separate bodies - with their different approaches to standards, codes of ethics, disciplinary procedures and the appointment of lay representatives accentuate professional differences and do nothing 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 overarching 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.

Social

So, what does this mean for intervention? Its very important, when at all possible, to foster relationships 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 Dr Vicki Sudhalter is head of the clinical psycholindevelop, early in life, compassion and guistics laboratory at the Institute for Basic understanding Research in Developmental Disabilities, Staten (b) children with fragile X are very social and Island, New York, e-mail vsudhalter@psynet.net want friends (c) children with fragile X are exceptionally good mimics and we want them to mimic the good References behaviours. Belser, R.C., & Sudhalter, V. (1995) Arousal difficulMaterials and methods used should feature real ties in males with Fragile X Syndrome: A life events whenever possible Preliminary Report. so the child can relate to them Developmental Brain and feel happy - an important Dysfunction 8: 270-279. part of therapy - and unfamilBelser, R. & Sudhalter, V. (in Do I prepare clients iar words, concepts and relapress) Conversational tionships should be introsufficiently for Characteristics of Children duced in at least 10 familiar with Fragile X Syndrome: transitions? situations. Impulse control via Repetitive Speech. American Do I recognise that a wait programme is an Journal of Mental diagnosis can be important therapy target. Retardation. significant in We want to provide the Boomer, D.S. & Dittman, A.T. understanding child with an understanding (1964) Speech rate, filled of their own arousal systems, communication and pause, and body movement and help them build up ways in interviews. Journal of how best to intervene? of calming themselves, such as Nervous and Mental Disease Do I structure therapy deep breathing. Quiet time in 139: 324-327. so anxious clients a small, comfy place needs to Canales, D.N. & Thompson, have the opportunity be taught, valued and pracN.M. (1995) Communication tised as a life skill in every to calm down? deviance in females with environment. It is useful to fragile X syndrome. provide fidget toys and orally Presented at the 23rd Annual Meeting of the stimulating chews such as licorice, gum or aquariInternational Neuropsychological Society, Seattle um tubing and things to look at such as books. Washington. Most of the children love music and it calms and Madison, L.S., George, C. & Moeschler, J.B. (1986) focuses them. Soothing background music can Cognitive functioning in the fragile-X syndrome: A help them to concentrate on a task or play. Let study of intellectual, memory and communication music be part of daily routine and provide opporskills. J of Mental Deficiency Research 30:129-148. tunities for calming, rhythmic movement; for Sudhalter, V. & Belser, R. (under review) example, sitting on a rocking chair, going on the Conversational Characteristics of Children with swings in the park, riding a bike. Fragile X Syndrome: Tangential Language. Occupational therapy is very valuable to children with fragile X, particularly when sensory The Fragile X Society is at 53 Winchelsea Lane, integration techniques are used to help the child Hastings, East Sussex TN35 4LG, tel. 01424 cope with hyperarousal. Deep pressure, which 813147, www.fragilex.org.uk involves putting pressure on muscles and joints, is particularly useful to calm children and prepare

Guidelines for teachers of deaf pupils


The first three in a series of nine Education Guidelines to provide practical support for teachers 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

Reflections

Name change brings results


A charity name change has been credited with raising 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.

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health promotion

The right things at the right time


Read this if you believe prevention is better than cure want to work with other professionals are trying to implement national policy

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 Hurd and Diana McQueen explain how the germ of an idea incorporating the principles of prevention, intervention and collaboration became a reality.

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? Prevention Few would disagree that the speech and language therapists role in health promotion is crucial (RCSLT, 1996). This is also implicit in the Code of Practice (1994), but all too often our traditional 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

localised scale illustrate bottom up the value of embracing those philosophies and trying to make them a reality.

Perseverance
We 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 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. 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 committed to trying to improve the childrens skills before they go into school. Sandwell has consistently performed very poorly 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 population of some 300,000 tightly packed in approximately 12 square miles. There is a high incidence of special educational need, many socio-economic

problems and a large proportion of minority ethnic 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 formality 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.

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Foundations
This led us to think more deeply about what we were actually expecting children to do and how they could possibly meet these levels. Surely language skills should be adequate before children can be expected to tackle the National Curriculum? 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 analogy: 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 the SATS 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 definite skills in this area. Catts (1991) identified a critical 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 phonological 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 phonological awareness to the development of efficient written language skills. A number of studies assert that certain phonological skills precede and support 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 acquisition of literacy. Bryant et al (1990) in a longitudinal study pointed out that sensitivity to rhyming and alliteration are developmental precusors of phoneme detection. 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
As one child has a turn, the others demonstrate good sitting.

large numbers of our children enter nursery socially unprepared, scarcely able to put two words together and with few self-help skills.
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 phonological awareness would actually improve it.

Rigorous
One crucial area was money. Bob Boucher found available funds through his manager from The Tipton Challenge. We needed to set up the experiment properly because, unless we were rigorous, we wouldnt know if any gains made were attributable to the programme or not. Two parallel channels of activity followed; planning 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 testing. We used a test of verbal comprehension (RDLS), a non verbal test (picture similarities from the British Ability Scales) and a test of phonological 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 experimental 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

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-assessed on the phonological awareness test following the half-term holiday 1999, after 75 days of the programme 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 perspective 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, any programme is doomed to failure if the children cannot sit and listen. It may help us gain greater acceptance that attention and listening are learned skills 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, linguistic 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 foundation 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

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health promotion

Figure 1 - days 12 and 25

DAY 12 LEARNING OUTCOMES


children will maintain and identify good listening a) children will recall two unseen items in a sequence using a visual referent b) children will identify and name beginning c) children will clap out the names of objects pulled out of a box with one and two syllables d) 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 25 LEARNING OUTCOMES


Identify and demonstrate good listening a) Identify same versus different sounds from a choice - visually (matching) - auditorily (listening) b) Identify silly versus sensible words from a choice of 2 c) Name the sound that pops up d) Recall a series of 2/3 pictures in sequence (unseen)

The all-round gains children made from being able to sit and listen were a consistent and positive observation.

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

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.

Understanding
In many ways, the Sandwell Accelerated Language 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 experience. It asks What skills do children need in place before they can access the phonological awareness part of the programme? (core and linguistic skills). Also, staff are trained so they have ownership 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 developmental norms for the acquisition of speech and language and learning about phonological awareness 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 children could/should be doing, set within the context of what teachers know their children can actually do. This helps support the case for attempting the slightly different focus that the programme offers. The project has revealed a wealth of interesting information around teacher expectations, ranging from specific targets such as know colours

(our children will do that) to the simple developmental 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 significant differences. Maybe the experimental children 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.

Exciting
At 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 experimental 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 indicate almost all of the children were able to participate in and benefit from the programme. The allround gains children made from being able to sit and listen were a consistent and positive observation. 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 separately. 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 rigorous 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 supportive individuals. We were surprised at how different 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.

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health promotion

Figure 2 - day 64

Figure 3 PRE AND POST PHONOLOGICAL SCORES

DAY 64 LEARNING OUTCOMES


Good listening a) 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 and leave 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 say the letter sound and post it. e Familiar nursery rhyme.

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

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?

Angela Hurd is a senior lecturer at the University of Central England. Both she and Diana McQueen are practising clinicians.

References
Ball, E.W. & Blachman, B.A. (1991) Does phoneme awareness training in kindergarten make a difference in early word recognition and developmental learning? Reading Research Quarterly 26-49-66. 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 Psychology 26, 429 - 38.

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 developmental perspective. Boston. Little Brown and Co. Layton, L. & Deeny, K. (1996) Promoting phonological awareness in preschool children. In Snowling, M. and Stackhouse, J. (1996) Dyslexia speech and language. Whurr. Mann, V.A. (1986) Phonological awareness; the role

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

Resources
Edwards, 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.

Acknowledgements
We would like to thank all the children and nursery staff involved in the project and the Tipton Challenge Fund for the financial support.

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Intensive programme rolls out


A 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.

Club for parents


The 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 included. 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
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in my experience

The need
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.
or some patients, improved recovery from stroke depends on earlier detection of dysphagia. Training nurses to use a screening protocol may well promote this (figure 1), but success depends on the right nurses being appropriately and effectively trained. Clinical governance, continuing professional development, the commitment to evidence based practice and clinical 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 range of post registration provision, but education within the broader multidisciplinary team is not discussed. Communicating Quality 2 (1996) recognises the need for 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. In training nurses to use a screen to detect dysphagia, certain health risks might occur if the screen is not adequately performed since the patient may never be referred to speech and language 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 management 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).

for leadership F
Insight

Should speech and language therapists teaching these skills have proven competency in the field; both in dysphagia management and in teaching?

Read this if you: are involved in training other professionals are interested in issues of competency have a strategic role

The 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, including the 46 who finished the course and the 17 who didnt. Eighty five per cent of respondents said nurses should screen for dysphagia. Although the response is positive, lack of take-up of training is frequently 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 commonly 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 targeted. Nurses receive their training in different ways. Some have very formal academic education at a degree level. Others are trained via a diploma 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 certain 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

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in my experience

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 candidates had not carried out the screening procedure. And, although 88 per cent of the candidates felt confident to use the screen, concerns regarding measurement and recognition of competency were raised by some and by nursing management.

Different focus
Is a targeted level of training needed to reflect exposure to the patient group? For example, some departments train specialist dysphagia nurses. Perhaps there should be a different focus for nurses who rarely see stroke patients; for example, 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 disagreed. This is a system whereby continuing professional development can be recognised and incorporated in a further qualification, often a degree. To qualify, a course has to be evaluated and accredited 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-certification which reward participants for taking part in continuing professional development, usually by awarding credits. The Chief Medical Officer review (1998) considered non-credit bearing 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 system, open to GPs only, carries with it financial reward. It is the principle component of continuing GP medical education and has been widely encouraged. However, it is subject to much criticism for failing to demonstrate any convincing benefits for patient care through a resulting change in practice (Chief Medical Officer, 1998).

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 recovery from 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 governance, nurses can no longer continue to feed patients who may be at risk due to dysphagia. Figure 2 - Questions about training protocols

1. aims
Is 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. candidates
Who 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)?

3. content
Do candidates need to know the wider context of dysphagia? Should anatomy and physiology be included? Is there a need to explain videofluoroscopy and other techniques for assessment? Should the abnormal swallow be taught or only the normal?

4. method
Off ward or on ward? Does the venue make a difference to nurses ability to attend? Does the length - one hour, half day, whole day - or style - self taught, demonstration, lecture - influence the outcome?

5. commitment
What do we do about the speech and language therapists who consider only they should screen for dysphagia and it is not appropriate to promote the management of dysphagia across professional boundaries?

6. resources
Do departments have the resources / management support / nursing support to offer training?

Figure 3 - Questionnaire responses - type of training preferred Other

5%
A combination of both

Practical ward based

31%

34%

Partnership
Training 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

Non-ward based and include pathophysiology etc.

30%
Figure 4 - Differences across professions 1. clinical responsibility and accountability 2. educational attainment and commitment to continuing professional development 3. experience of the patient group 4. approach to changing practice 5. service delivery, practice and routines 6. service provision 7. speech and language therapy skills and approaches to dysphagia management 8. recognition of skills (both dysphagia management and teaching) 9. cross-professional training recognition.

SPEECH & LANGUAGE THERAPY IN PRACTICE WINTER 2000

13

in my experience

Reflections:
to deliver training that is appropriate and recognised. Many other examples of training across professional boundaries within the NHS share the same complexities. In our acute trust, the Nutrition and Dietetics department have offered nurses the opportunity to train in the use of nutritional risk scores and found training opportunities are not always taken up. Perhaps commitment to this ethos needs to be written into all professional codes of practice. Improved health outcomes usually lie outside the scope or control of any single practitioner. Real improvements are likely to occur if the range of professionals responsible for providing a service are brought together to share their different knowledge and experiences (Headrick et al, 1998.) This is not to say professional boundaries should not be respected. There is, as yet, no clear professional policy regarding the training of nurses, although many departments and nurses are committed to the principle. There may need to be an umbrella organisation for formal recognition of cross-professional training if appropriate, but informal recognition should be given and valued. We also need to address the issues of measurement and recognition of competency. Some might argue this applies most pertinently to speech and language therapists, as there is no clear policy regarding recognition of dysphagia training within the profession. In the meantime, delivering successful training depends on: identifying best practice assessing training need through audit devising relevant training through collaboration giving recognition maintaining and updating the positive effects. Most importantly, there is a need for leadership in all professions, including our own, to improve the effectiveness of cross-professional training. Helena Bowles BSc (Hons) MRCSLT is a senior speech and language therapist.

Acknowledgements

The writer thanks all speech and language therapy departments and nurses who kindly responded to her questions and the Herefordshire and Worcestershire Training Consortium. Also Yvonne Pettigrew, Therapy Services Manager, Worcestershire Acute Hospital Trust and Sandra Hulme, Therapy Lead, Worcestershire Community and Mental Health Trust, as well as the audit and training departments for their support in the training project.

Do I include skills in teaching others when planning continuing professional development needs? Do I understand the learning culture of the professionals I am training? Do I deliver training in a way that will benefit clients by changing practice?

References
Bowles, H. (1999) Training nurses to use a screen for dysphagia. Unpublished. Bradley, K. & Tomlinson, P. (1995) Are we prepared to share the management of dysphagia with nurses and are they prepared to take it on? Bulletin RCSLT. Crockford, C. & Smithard, D.G. (1997) The Swallow Test. Bulletin RCSLT. Chief Medical Officer (1998) A Review Of Continuing Professional Development In General Practice. May. HMSO.

Dangerfield, L. & Sullivan, R. (1999) Screening for and managing dysphagia after stroke. Nursing Times May 12, 95 (19). Davies, S. (1999) Dysphagia in acute strokes. Nursing Standard April 14,13 (30). Department Of Health (1998) First Class Service, Quality in the new NHS. HMSO. Gravill, P. (1999) SIGNs of Progress in Dysphagia. Speech and Language Therapy in Practice Spring. Haslock, I. (1999) Introducing Clinical Governance in Acute Trusts. Hospital Medicine October, 60 (10). Headrick, L.A., Wilcock, P.M. & Batalden, P.B. (1998) Continuing Medical Education, Interprofessional Working and continuing medical education. BMJ 316, 7 March. Herbert, S. (1996) A team approach to the management of dysphagia. Nursing Times 92 (50) December. Leder, Steven B. (1997) Videofluoroscopic Evaluation Of Aspiration With Visual Examination Of The Gag Reflex And Velar Movement. Dysphagia 12. 21-23. Royal College of Speech & Language Therapists (1996) Communicating Quality 2. RCSLT. Smithard, D.G., ONeill, P.A. Parks, C., Morris, J., Wyatt, R., England, R. & Martin, D. (1997) Complications And Outcome After Acute Stroke, Does Dysphagia Matter? Stroke 27:1200-4. United Kingdom Central Council For Nursing, Midwifery And Health Visiting. (1992) The Scope of Professional Practice. A UKCC Position Statement.

...RESOURCES...RESOURCES...RESOURCES...RESOURCES...RESOURCES...RESOURCES... E-commerce
A leading supplier of resources for speech and language therapists now has all materials available on CD-ROM and a facility to buy directly over the internet. The minimum order for Black Sheep Press CDs is 15.00, and the material supplied will be at the same price as the card version but with post free anywhere in the world. The company is encouraging contact via e-mail. New resources, detailed in the free Winter 2000/1 catalogue, include 2-stage Sequences and Speech Bubbles, which is for older children with semanticpragmatic difficulties. BSP tel. 01756 791 627, www.blacksheeppress.co.uk, e-mail alan@blacksheeppress.co.uk

Voice courses
A company which offers courses teaching the Jo Estill approach to voice has a new name to reflect its expanded range. While Vocal Process Ltd will continue to maintain and upgrade the Estill Voice Craft course list, new courses offered include dynamic diction, teaching teachers and professional development. Details from Jeremy Fisher, Vocal Process Ltd, 59 Fearnley House, Vestry Road, London SE5 8JR, tel. 020 7703 0136.

Aphasia in pictures
Picturing Aphasia, a new version of the booklet Drawing the Picture Together, is available from Speakability. It takes the reader through a basic description in pictures of what stroke is and why it causes loss of speech and language. It gives a positive image of how quality of life can be improved by therapy and support in the community, and contains suggested communication strategies, how the family can be affected, tips on staying healthy and useful addresses. 1 per copy for 1-50 copies, 80p per copy for 51+ copies, inc. p+p, cheques to Speakability, 1 Royal Street, London SE1 7LL.

Evidence based practice


Public health is the focus of two new reports from the NHS Centre for Reviews and Dissemination. The first is a resource document that brings together reviews of research on interventions to improve public health. It is intended to be of use to health service clinicians and managers who are responsible for making plans to improve health and prevent illness. It focuses on the importance of having broad strategies and brings together evidence from clinical research, public health research, criminology, social research and education. www.york.ac.uk/inst/crd/wph.htm The second, on fluoridation of drinking water, expresses surprise at the lack of good quality research in such a hotly debated area. Although an association with Downs Syndrome, cancer and bone fracture was not found, the benefits in reducing tooth decay are smaller than previously reported and have to be balanced against the increased prevalence of fluorosis (mottled teeth). www.york.ac.uk/inst.crd

Newsgroup
Following on from the newsgroup Easyspeak, an e-mail network has been set up for people working with children with physical or neurological impairments or complex medical needs. To subscribe, e-mail majordomo@ngfl.gov.uk with the message subscribe pd-net

Animated verbs
A new Clicker resource brings verbs to life. Clicker Animations enables children to write with moving pictures. www.cricksoft.com

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SPEECH & LANGUAGE THERAPY IN PRACTICE WINTER 2000

further reading

This regular feature aims to provide information about articles in other journals which may be of interest to readers. The Editor has selected these summaries from a Speech & Language Database compiled by Biomedical Research Indexing. Every article in over thirty journals is abstracted for this database, supplemented by a monthly scan of Medline to pick out relevant articles from others. To subscribe to the Index to Recent Literature on Speech & Language contact Christopher Norris, Downe, Baldersby, Thirsk, North Yorkshire YO7 4PP, tel. 01765 640283, fax 01765 640556. Annual rates are Disks (for Windows 95): Institution 90 Individual 60 Printed version: Institution 60 Individual 45. Cheques are payable to Biomedical Research Indexing.

PARKINSONS DISEASE
Ho, A.K., Bradshaw, J.L., Iansek, R., Alfredson, R. (1999) Speech volume regulation in Parkinsons disease: effects of implicit cues and explicit instructions. Neuropsychologia 37 (13) 1453-60. This study examined the regulation of speech volume in hypophonic subjects with Parkinsons disease (PD) and ageand gender-matched controls. The first two experiments investigated the ability of subjects with PD to automatically regulate speech volume in response to two types of implicit cue: (i) background noise (BGN) and (ii) instantaneous auditory feedback (IAF). Control subjects demonstrated the Lombard effect by automatically speaking louder when competing against increasing levels of background noise. They also showed the reverse effect, decreasing speech volume when increasing levels of facilitative instantaneous auditory feedback were provided. Subjects with PD demonstrated decreased overall speech volume; they were less able than controls to appropriately increase volume as background noise increased, and to decrease volume as IAF increased. Thus, subjects with PD demonstrated over-constancy of speech volume and failed to respond to the implicit cues integral to volumetric scaling. A further experiment (3) was carried out to contrast the regulation of volume in response to implicit cue with an explicit attention-driven cue (i.e. instructions regarding volume level). As in Experiments 1 and 2, subjects with PD exhibited reduced speech volume. Under explicit volume instructions, the ability of subjects with PD to regulate volume was normalised. These findings suggest that subjects with PD have the capacity to speak with normal volume provided they consciously attend to speaking loudly. In subjects with PD, overall speech volume was always lower than for control subjects, suggesting a reduction of cortical motor set in the articulatory system similar to that demonstrated by the reduced amplitude of limb movements (hypokinesia) in the motor system.

CHILD LANGUAGE
Toppelberg, C.O., Shapiro, T. (2000) Language disorders: a 10-year research update review. J Am Acad Child Adolesc Psychiatr 39 (2) 14352. OBJECTIVE: To review the past 10 years of research in child language or communication disorders, which are highly prevalent in the general population and comorbid with childhood psychiatric disorders. METHOD: A literature search of 3 major databases was conducted. The child language literature, describing the domains of language development phonology, grammar, semantics, and pragmaticsis reviewed. RESULTS: Disorders of grammar, semantics, and pragmatics, but not phonology, overlap significantly with childhood psychiatric disorders. Receptive language disorders have emerged as highrisk indicators, often undiagnosed. Language disorders and delays are psychiatric risk factors and have implications for evaluation, therapy, and research. However, they are often undiagnosed in child mental health and community settings. The research has focused mostly on monolingual English-speaking children. CONCLUSION: Awareness of basic child language development, delay, and deviance is crucial for the practising child and adolescent psychiatrist, who must diagnose and refer relevant cases for treatment and remediation. Future research needs to address the growing language diversity of our clinical populations.

TURNER SYNDROME
Van Borsel, J., Dhooge, I., Verhoye, K., Derde, K., Curfs, L. (1999) Communication problems in Turner syndrome: a sample survey. J Commun Disord 32 (6) 435-44; quiz 444-6. Turner syndrome is a condition first recognised in 1938 with an incidence estimated at 1/2500 female births. It is known to result from a missing X chromosome and has as its main features a short stature, ovarian dysgenesis, neck webbing, congenital peripheral lymphedema, coarctation of the aorta, cubitus valgus, dysplastic nails, and pigmented nevi. In addition, psychosocial difficulties including communication disorders may occur. While the physical characteristics of Turner syndrome have been well documented, information on the communication problems in Turner syndrome is scarce. This study reports the results of a sample survey in 128 girls with Turner syndrome ranging in age from 2.4 to 58.8 years. Results are presented on the occurrence and nature of speech and language problems (voice disorders, articulation problems, stuttering, and delayed language development), on the presence of learning disabilities, and on educational history.

FLUENCY
Mahr, G.C., Torosian, T. (1999) Anxiety and social phobia in stuttering. J Fluency Disord 24 (2) 119-26. In this study, symptoms of anxiety in stutterers (n=22) were compared with those found previously in social phobic patients and control subjects. It was found that stutters had greater levels of social anxiety and avoidance than did non-patient controls, but that they had less social distress and avoidance, less fear of negative evaluation, and fewer symptoms of social phobia and agoraphobia than social phobics. The main phobia in stutterers was speech-related fear, suggesting that stutters do not suffer from social phobia but that some may avoid social situations through fear of stuttering.

APHASIA
Garcia, L.J., Barrette, J., Laroche, C. (2000) Perceptions of the obstacles to work reintegration for persons with aphasia. Aphasiology 14(3) 269-90. The Handicap Creation Process Model (HCPM) suggests that persons with disabilities may experience difficulties at work because of environmental barriers. The present study reports on the perceptions of persons with aphasia, of speech-language pathologists, and of employers regarding the potential barriers to job (re)integration. Statements were gathered using a focus group and a nominal group technique, and analysed according to whether the barriers were perceived as residing with the individual, with the organisation or with society. Qualitative differences were noted among the perceptions of the three groups. Speech-language pathologists focused on the personal and societal barriers where employers focused on the organisational barriers. Persons with aphasia perceived barriers at all levels. Suggestions for strategies for eliminating these barriers for persons with communication disorders were also collected.

SPEECH & LANGUAGE THERAPY IN PRACTICE WINTER 2000

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further reading further reading further reading further reading further reading

further reading...

cover story

Read this if you offer any training aim to promote timely referral want to improve multi-professional working

Pressures, priorities and pre-emptive practice


As bed blocking puts pressure on acute services and the patients concerned, new initiatives strive both to keep people at home 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.

peech and language therapists and nursing staff in hospitals have been working together for some time now to improve care for patients with dysphagia. A number of training packages help nurses to identify - and in some cases manage patients with acute dysphagic symptoms in ward situations. However, the same level of training and awareness cannot be said to exist for patients in a community setting, such as their own home. Kohler (1991) describes how, as community care grows, health care professionals are increasingly called upon to treat dysphagia in nursing home and home care settings. Training for staff in the identification and management of dysphagia is often insufficient. In light of dysphagias serious consequences, she suggests therapists and nurses need to develop models to address this. All the literature reviewed to date focuses on hospitalised or long term nursing care populations and I have found no other evidence that examines populations cared for at home. Yet hospital admissions can be directly related to a worsening dysphagia, resulting in dehydration, inadequate nutrition or possible chest infections. These patients may be in contact with district nursing services prior to hospital admission or discharged to their care after an acute or rehabilitation episode. It therefore seems appropriate to develop a collaborative approach. With this in mind, the Collaboration in Dysphagia project was conceived and a successful bid made for Winter Pressures Funding - money earmarked for initiatives which help keep people in their own homes rather than admitting them to hospital. We aimed to address the early identification of patients in the community with dysphagia by heightening district nurses awareness, thus improving professional links and knowledge of roles. We hoped to answer the questions: Does dysphagia training for other professionals change their practice? Can collaboration between district nurses and speech and language therapists improve the service to dysphagic patients? Are there greater feelings of satisfaction amongst health care professionals if they work more closely together and share skills?

The challenge
Extensive evidence suggests training on its own has little effect on staff behaviour (Cullen, 1988; Axtell et al, 1997). Also, if new skills are to be transferred to the workplace, trainees must feel that the course is relevant to their jobs and be committed to using what they have learned (Axtell et al, 1997). Following discussions and completion of a postal questionnaire to establish perceived learning requirements, Primary Care Nurse Team Leaders and the speech and language therapy service jointly agreed the project aims: 1. Enhance district nurses awareness of dysphagia and the local services available to their patients. 2. Develop an Observational Dysphagia Screening Assessment (figure 1) for district nurses and provide information on how to refer for further assessment. 3. Offer opportunities for joint assessment of patients with dysphagia by district nurses and

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SPEECH & LANGUAGE THERAPY IN PRACTICE WINTER 2000

cover story

Figure 1 Dysphagia Screening Assessment


Patients name...................................................... Date................... Check all applicable items () Indicate whether observed by you (O) or reported by patient / carer (R) Comment as necessary O/R Comment

Figure 2 Evaluation of workshop 52 responses


STRONGLY AGREE (1) AGREE (2) NEUTRAL (3) DISAGREE (4) STRONGLY DISAGREE (5)

1. Chest infections / pneumonia.......................................................................... 2. Weight loss........................................................................................................ 3. Dehydration / UTIs............................................................................................ 4. Frequent coughing / throat clearing............................................................... 5. Choking episodes.............................................................................................. 6. Wet / bubbly voice quality............................................................................... 7. Drooling............................................................................................................. 8. Poor oral hygiene / dry mouth........................................................................ 9. Pain on swallowing.......................................................................................... 10. Weak / hoarse voice....................................................................................... 11. Slurred speech................................................................................................. 12. Reduced alertness........................................................................................... 13. Attention / memory changes......................................................................... 14. Impaired language.......................................................................................... 15. Assistance to eat / drink................................................................................. 16. Delayed / absent swallow to command....................................................... 17. Weak / absent cough to command............................................................... 18. Sudden / gradual onset.................................................................................. 19. Length of time since onset............................................................................. 20. Last nights dinner?.........................................................................................

1) The workshop provided the information and knowledge to make a difference in my work. 2) The content was consistent with my prior expectations. 3) The topics covered reflected my professional needs. 4) The style of presentation was conducive to learning. 5) The time allotted for the content covered was appropriate. 6) The teaching aids used were appropriate in helping me to learn. 7) The physical facilities (size of room, lighting, temperature etc) were conducive to learning. 8) The overall management of the workshop was appropriate.

1 % 69 42 52 71 37 42 21 58

2 % 31 50 48 29 46 54 54 42

3 % 8 9 4 23 -

4 % 8 2 -

5 % -

9) Briefly describe the strengths of this learning experience. Increased awareness of problems with dysphagia (25) Helped to identify patients who may benefit from being referred to a speech and language therapist (11) Now we know who to contact to make a referral (10) Hope to improve interprofessional working (5) Excellent (4) Interesting (2) Worthwhile (2) Informative (2) Pre-course reading was good (1) 10) Briefly describe any weaknesses of this learning experience. Not enough time (2) Lot to cover in two hours (2) Hard seats (2) Noisy location (1) 11) Any other comments. Other specific training sessions would be useful (4) Excellent (4) Useful (3) Valuable (3) Enjoyable (2) Rewarding (2) Well prepared (1) Good quality handouts (1) Information was easy to absorb (1) Pre-course reading was very useful (1) Feel I can make a positive contribution to patient care (1)

Completed by .............................(Sign) Action Plan .......................................................................................

speech and language therapists. 4. Investigate current practice in home use of portable suction equipment. District nurses wanted workshops over lunchtime or in the early afternoon to fit in with their shift pattern. They wanted a maximum of two hours and evidence based written information to take away. They wanted small interactive groups, and their learning to have a practical application.

The setup
Discussion of individual clients was encouraged during the workshops to facilitate the link between theory and practice. They covered: a) The local dysphagia service b) Multi-professional roles in dysphagia management c) Normal swallowing d) Factors affecting normal swallowing e) Signs of swallowing difficulty f) Conditions giving rise to dysphagia g) An overview of interventions h) Collaborative working with speech and language therapists. Pre-workshop reading familiarised participants with the subject matter and stimulated discussion on normal swallowing and nursing roles in dysphagia. A workshop resource pack included information on the local dysphagia service and how to contact them. Displays of equipment and information from occupational therapy, dietetics and dental services were available during the workshops, and a variety of learning methods were employed - discussion, video, practical exercises and information exchange.

The Observational Dysphagia Screening Assessment, which had been drawn up by the speech and language therapists in collaboration with the district nurses, was discussed within the workshop setting. It was designed to fit in with questions that would be asked by the district nurses during their existing assessment procedure, and the speech and language therapists took on board any amendments proposed. The district nurses felt questions 16 (Does the client have a delayed / absent swallow to command?) and 17 (does the client have a weak / absent cough to command?) would be better answered during a detailed swallowing assessment by a speech and language therapist. The workshops were evaluated immediately after completion (figure 2). In January 2000, the workshop participants were asked to fill in an anonymous Evaluation of Knowledge questionnaire, to see if their increased dysphagia awareness had led to a change in clinical practice. This questionnaire was deliberately used some months after completing the workshops to see if the newly acquired knowledge had stood the test of time. It also took in issues around usage of portable suction in the home, which had not been included in the workshops due to time constraints.

The knowledge gained


Thirteen two-hour workshops were originally organised in four different locations within the Trust. Eight ran; five were cancelled because of insufficient numbers. Fifty-two district nurses attended. Comments revealed they had not necessarily placed a high priority on attendance. However, once they had participated, they felt much more enthusiastic about the topics priority. Examples of comments made are I didnt realise that dysphagia was such a big/ complicated subject; Im so glad I came on the workshop. Now that I have this knowledge, there are several patients who I am a bit concerned about. The workshops were positively received, with 50 per cent of those attending stating their awareness of dysphagia had increased as a result. The district nurses particularly valued information about the normal swallow, and having information about how to contact the speech and language therapists either for advice or to request an assessment. Collaborative visits were offered by the speech and language therapists during the workshops to relate theory to practice and share skills amongst professionals. Following in-depth interviews with some of the workshop participants, to ascertain the issues of most importance, an Evaluation of Knowledge questionnaire was drawn up. This anonymous, multiple-choice postal questionnaire had a 46 per cent response rate, slightly higher than the

a variety of learning methods were employed -

discussion, video, and information exchange.

practical exercises

SPEECH & LANGUAGE THERAPY IN PRACTICE WINTER 2000

17

cover story

Knowledge of dysphagia

chart a Have you used the dysphagia screening assassment on any of your patients? UNSURE 8% YES 12%

NO 80%

chart b

Comments revealed they had not necessarily placed a high priority on attendance. However, once they had participated, they felt much more enthusiastic about the topics priority.
Do you receive feedback from a speech & language therapist about joint patients? UNSURE 20% YES 34%

NO 46% chart c

Reflections
Do we recognise how our service relates to areas of government priority? Do we appreciate the implications of differences in community / acute settings? Do we understand that changes in practice need mutual trust and collaboration over time?

expected rate of 33 per cent from previous experience of postal questionnaire returns. This was the only way feedback could be gathered reliably without using considerable resources in face to face interviews. Also, as a number of the district nurses had difficulty taking time out from their clinical day even to attend the workshops, we felt a postal questionnaire would impact least on their clinical commitments. Ninety-two per cent of respondents felt their knowledge of dysphagia and of the speech and language therapy service had increased as a result of the workshops. Chart a shows most felt their knowledge was now good or advanced. However, they had not necessarily changed their practice. Ninetyfive per had not had patients with swallowing problems warranting a joint visit as district nurses, unlike speech and language therapists, do not come across large numbers of severely dysphagic patients. Also, anecdotal comments made it clear that, with a heightened awareness of the problem of dysphagia, some district nurses were able to give advice and manage the patients themselves. A small number still did not know how to contact the speech and language therapy department to make a referral, or discuss a patient about whom they had concerns. However, 80 per cent now felt that they had the knowledge to do this. The Dysphagia Screening Assessment had been used by 12 per cent since completing the workshop (see chart b), with speech and language therapy referrals made on the basis of their findings. Since running the workshops, joint visits by district nurses and speech and language therapists have been arranged to patients in their own homes. Numbers are, as yet, small, but will be monitored by the speech and language therapy service in the future. Informal requests for advice have increased, generally by phone, but also during face to face contact between the two professions. The methods of feedback speech and language therapists use after an assessment, whether with a district nurse or not, are to be reviewed following responses from 100 per cent of the district nurses that they would appreciate feedback about their patients. Currently, although 34 per cent are informed of speech and language therapists findings as a matter of course, 46 per cent are not (chart c). As speech and language therapists, we are quite proactive at providing feedback to our referring agents - usually GPs in the community but are generally poor at including a district nurse in our response. They have requested feedback in the form of both letters and phone calls and it may also be possible for a speech and language therapist - who is visiting a patient where there is known district nurse involvement - to write in the patient-held record at their home.

Whose responsibility?
Literature on the usage of portable suction is sparse and tends to focus on endotracheal suction procedures. Woollons (1996) suggests a patients need for portable suction may lengthen their dis-

charge process from hospital, and that an awareness of the availability of the technical equipment should be the responsibility of the nurse. As none of the equipment is available on prescription, the price of suction tubing, suckers and suction catheters should be taken into consideration. Shellenbarger and Narielwala (1996) state that the portable suction equipment should be ordered from a reliable medical supply agency and arrangements must be made for its delivery to the home. There is a consensus in the literature that patients and care givers should be thoroughly trained in the technique of providing suction and cleaning equipment, and that their performance should be observed and evaluated over time (McInturff et al, 1999; Shellenbarger and Narielwala, 1996; Woollons, 1996). Specific guidelines on disposal of suction waste, techniques for administration and frequency of changing suction catheters are available in the literature. However, the authors are not necessarily in agreement on all of these: McInturff et al (1999) state suction catheters may be re-used and discarded after 24 hours, but Anonymous (1998) feels they should be discarded after each suctioning episode. Responses to the questionnaire revealed varied opinions from the district nurses as to what happens locally. Of those surveyed, 58 per cent were unsure whether there was a local policy for suction provision, training and cleaning in the home, and 34 per cent felt there was. There is, in fact, no such policy within the Trust - one of the reasons for bringing the topic up within the questionnaire. There is obviously some confusion about what happens when suction is needed in the home, not least amongst the people who are often called upon to provide it. The district nurses felt there were a variety of providers of the equipment including GPs, district nurses, speech and language therapists, and the hospital, although 62 per cent of the responses named the Home Loans System as the main one. Interestingly, speech and language therapists do not provide suction equipment for home usage they would need to approach another agency if they felt that it would prove beneficial to a patient. If they were providing the equipment, 70 per cent of the district nurses said they would provide the necessary information and training for the patients and carers about usage and cleaning procedures. It was clear that quite a few of the district nurses were not involved in providing suction equipment, either because they had not had patients who needed it, or because their role did not include this. It was also clear that this was an area that would benefit from some collaborative working in the future, to make procedures clearer for district nurses, speech and language therapists and their patients.

Opportunities for the future


The Collaboration in Dysphagia project has achieved much. The workshops and the course

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cover story / reviews

r. e.v i. e. w REVIEWS. .. ..s.


documents have been well received. District nurses are more aware of dysphagia in their patients. They have better professional links, both in face to face contact and over the phone - and patient care is improving as a result. The roles of the speech and language therapist and district nurse in dysphagia management are clearer as a result of sharing information through workshops and joint patient visits, and opportunities for joint assessments are increasing. We have also learnt a great deal from the experience. Plans for the future include: a) Offering Collaboration in Dysphagia to all the district nurses in the Trust b) Devising a method of monitoring any changes in district nurse involvement in speech and language therapy patients with dysphagia. (Using the local statistics system, COMPASS.) c) Amending speech and language therapy feedback procedure to district nurses to provide an improved method of sharing information. d) Amending and piloting the Observational Dysphagia Screening Assessment in a tear-off pad format. e) Organising a working group to produce a policy document on the home use of portable suction. At the time of writing, Jane Cantwell (formerly known as Jane Haxworth) BA Hons; Reg. MRCSLT; Dip ACS (Aphasia) was a specialist speech and language therapist with Swindon and Wiltshire Healthcare NHS Trust. She is now based at Gloucestershire Royal Hospital. The Collaboration in Dysphagia Project was set up in early 1999 in East Wiltshire Health Care NHS Trust, now part of Wiltshire and Swindon Health Care NHS Trust. For further details / copies of the project, tel. 01452 394576.

More, please! Fun, flexible, friendly, fairly priced.


TRAINING
Dont Hang Up - A training package to help people with communication difficulties use the telephone more effectively. Joan Murphy and Janet Scott University of Stirling ISBN 1 85769 0982 35 How refreshing to read a package that can be used by a range of people and is also practical, flexible and excellent value. It includes a video and book which identify the issues surrounding telephone and e-mail access for people with communication difficulties. The video allows us to share the strategies employed by those who have communication difficulties and thus facilitates us to develop yet further ideas. The video and book can be used together or stand alone for information or training purposes. The book is clearly laid out with photocopiable checklists, easy to follow for any text reader. Symbol readers may need further support in translating the materials. I particularly welcomed the training strategies for people in the community who may not always be as supportive as some of those involved in the role playing activities... More, please! Helen Meades is a specialist speech and language therapist coordinating a service for people with learning disabilities and communication difficulties.

CHILD LANGUAGE
Clinical Evaluation Of Language Fundamentals Preschool UK Edition (CELF-PreschoolUK) Wiig, Secord and Semel The Psychological Corporation 194.99 3 . It has been stanThe test serves as a downward extension of CELF-RUK/ UK dardised for children aged between 3 years and 6 years 11 months and is designed to evaluate four basic language skills at receptive and expressive level: semantics, morphology, syntax and memory. This adapted version is welcome and appears well planned and executed. Key UK professionals have successfully built on the considerable US expertise involved in developing the original test and it has been revised without fundamentally changing either the content or administrative procedure. The process of standardisation has been based on a quota sampling frame which reflects the population distribution by region, age, gender, ethnicity and socio-economic group and includes a minimum of 60 children in each age band. (However, I fail to understand why children with language or some other learning difficulty are so often excluded for the purposes of test standardisations.) The outcome is a UK version which therapists can have confidence in and which enhances the value of a test we are already familiar with and enjoy using. The comparatively few amendments to pictures and stimuli help the test to flow by presenting the children with more familiar situations and terminology (Appendix 1 helpfully lists all anglicisations). Perhaps it was a little too conservative in not changing skating to an activity with which UK children would be more familiar. Some awkward items remain in the Sentence/Word Structure sections: 1. He will eat the apple/skate - normal British usage would be going to. 2. I wish I could tell whether one picture shows two dogs or a dog and a cat! 3. It can be very difficult to discriminate the use of the possessive s as it is followed by sh in This is the girls shoe. 4. Eliciting the past tense rarely works, even for children who use the structures spontaneously. The enlarged score sheet is most helpful for space to write, eyesight and filing. The addition of a means of recording the significance of receptive/ expressive language difficulties and of individual sub-tests is a bonus, despite the now busy format of the front page, and should discourage therapists from making purely subjective comments. I do find the change of wording in the computations for the Total Language Score confusing and would prefer it still to specify that Sum of RL & EL referred to means the sum of the standard scores. The assessment is fun - bright, clear pictures, meaningful situations and three booklets help keep the children keen and motivated. flexible - the Quick Test can provide a useful screen and Extension Testing can help in target setting for Individual Education Plans by probing specific areas of weakness. friendly - easily transportable and easy to administer, record, score and interpret, with an excellent manual which is well worth spending time getting to know. a fair price. My only real gripe is the name, which is misleading as its greatest clinical value is for children in school between Reception and Year 2. I have to justify to parents and teachers why I am administering a test that describes itself as preschool. CELF - Early Years would have been helpful and more accurate. I would not be without a CELF-Preschool. At 120, the upgrade kit seems expensive but therapists will feel more comfortable administering this edition and more confident relating scores to the UK standardised data. Angela Abell is a speech and language therapist with Essex & Herts Community NHS Trust.

References
Anonymous (1998) Guidelines for disinfection of respiratory care equipment used in the home. Respiratory Care 33 (9), 801-8. Axtell, C.M., Maitlis, S. & Yearta, S.K. (1997) Predicting immediate and longer-term transfer of training. Personnel Review 26 (3), 201-213. Cullen, C. (1988) A review of staff training: The Emperors Old Clothes. The Irish Journal of Psychology 9 (2), 309-323. Kohler, E. (1991) A dysphagia management model for rural elderly. Physical and Occupational Therapy in Geriatrics 10 (1) 81-95. McInturff, S., Make, B.J., Robart, P., Saposnick, A.B. (1999) AARC Clinical Practice Guidelines: Suctioning of the patient in the home. Respiratory Care 44 (1), 99-104. Shellenbarger, T. & Narielwala, S. (1996) Caring for the patient with laryngeal cancer at home. Home Healthcare Nurse 14 (2), 81-90. Woollons, S. (1996) Ambulatory suction equipment for home use. Professional Nurse 11 (6), 373376.

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groups

To facilitate a childs speech and language development, parents and professionals need consistent and timely information and the opportunity to share ideas. 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.

Read this if you are interested in early intervention organising groups empowering carers

t is becoming increasingly common to offer speech and language therapy intervention very early to children with Down Syndrome to try to minimise language difficulties and their effects. A readily identifiable population from birth, the vast majority will be late starting to talk and will continue to experience language difficulties into later life. There is growing evidence that speech and language are areas of specific deficit, with these children typically performing better in non-language areas of cognitive development (Chapman, 1995). We 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: 1. Empowering We decided early on that the intervention should be targeted at empowering parents. The identification

of a significant developmental disability in a child at or around the time of birth can substantially affect parents confidence in their own parenting abilities. It is important to mitigate this effect. 2. Informing We share information with parents. This includes knowledge of typical developmental sequences to help them appreciate where their own child is developmentally, and to be aware of the next step. It also helps them see how professionals arrive at judgements about developmental progress and enables them to take a more active role in these judgements. 3. Teaching We enhance parents skill levels so they are better able to facilitate speech and language development. 4. Explaining We explain the role of the speech and language therapist in their childs development. We are

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Photos courtesy of the Scottish Downs Syndrome Association

Early goals bring a result

groups

We wanted equity across the city and to receive referrals as early as possible
referrals on a city wide basis. We informed all relevant professionals - consultant community paediatricians, health visitors, preschool special needs services - of our intentions. There is now a highly effective referral system, with some babies coming to us as young as three months.

Surprised
Parents have differing reactions to early referral. Most anticipate contact with a speech and language therapist but are surprised at how soon we become involved. However, some parents, having looked into intervention for children with Down Syndrome, request early input. Each family is visited at home, twice, before a group begins. This is to introduce our service, engage the parents, and answer any immediate questions. We explain the benefits of early intervention, and also introduce the concept of signing as part of total communication. Substantial research evidence suggests the introduction of a transitional alternative and augmentative communication (AAC) system such as signs for this population (Fowler, 1990). The group consists of six sessions, on a monthly basis, with families attending a central location within the Trust area. The format of the sessions is consistent throughout (lasting 1-11/2 hours) starting with a general discussion or recap of previous information. We then spend time discussing a particular language related topic, encouraging parents to focus on their childs development. At the end of this section we ask the parents to choose a specific objective to work on in the coming month. Next, we teach the parents a small number of basic signs. These are largely social signs which fit in with a small childs daily routine. The choice of signs has been modified in the light of discussion with parents. The current list is all gone, hello, more, no, please, thank you, good, give, drink/cup, wash, sleep/bed, eat, go, look, car, telephone. We re-visit these at each session, with the aim of incorporating signs consistently into the home routine, rather than amassing a large but unused vocabulary.

keen to stress the advisory and facilitative aspects to make our relationship with parents more honest and equal. This helps establish realistic expectations of what the speech and language therapist can or should do, and places parents in the primary position as language facilitators.

Equity
We decided to deliver our early intervention in a group format for a number of reasons. The existing situation in Manchester meant that the service offered to each child with Down Syndrome varied according to time and location of referral. Speech and language therapists waited for the children to be referred - rather than actively seeking them - then made individual decisions on management. We wanted equity across the city and to receive referrals as early as possible so we could commence intervention in the first year. The recent

merging of three district speech and language therapy services into one community trust also meant we had a population large enough to offer us viable group numbers. We knew of a number of studies showing the value of group based intervention for the parents of children with special needs, and wanted to provide a forum in which parents could meet, share experiences and information and support each other. As professionals, we knew we would learn a lot from the families in a group situation, and wanted the opportunity to provide consistent and evidence-based information to parents and other professionals. Community paediatricians are notified by their hospital colleagues when a baby with Down Syndrome is born. They then refer to other community services including preschool special needs. Before the group was started, we actively sought

Opportunity
The group finishes with tea and coffee where the parents have an opportunity to share their own experiences - we deliberately take a less active role in this part of the group. Over the six sessions we focus on a variety of speech and language topics:Group 1 - general principles of interaction and intervention Group 2 - play Group 3 - listening Group 4 - turn-taking Group 5 - speech sounds and feeding Group 6 - recap - parents choice of topics and discussion of future intervention. There is a handout for each subject and, although this section of the group is essentially

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groups

Group 1 - General Principles Pacing


Remember that it takes your child longer to work out what sounds and words mean. Try to speak - in short sentences - slower - a little louder Have lots of tune in your voice Allow plenty of time for him to react. Parent Goal I know I speak too fast to Jasmin so I will try to slow down and give her the chance to respond.

Group 2 - Play Relating 2 objects together


The child will relate 2 objects. eg. banging them together piling on top of each other placing in a container

Photos courtesy of the Scottish Downs Syndrome Association

Figure 1 - Examples of monthly topics discussed and goals set

Parent Goal Sam is good at holding things but not at letting go. I will work on getting him to drop objects into a pan so that they make a noise.

Group 3 - Listening Meaningful Noises


Here your child starts to relate a particular sound to: an object eg. keys, phone part of his daily routine eg. meal time, bath time

led by the therapists, there is plenty of opportunity to discuss and learn from each other. We have a small range of resources related to children with Down Syndrome that parents are free to loan and use at home; for example, the MAKATON nursery rhymes video; books on general development of children with Down Syndrome; specific texts on language development (Kumin, 1996). We also encourage parents to use the Downs Syndrome Association and the DOWNSed as resources, and some are members of local and national support groups.

Consistency

Although the group is for parents, we have welcomed the variety of professionals asking to join us. This is especially helpful when nursery staff working with a particular child attend because it means we can develop consistenGroup 4 - Turntaking cy in development and knowl Am I proactive in edge. We have also built up our Set the scene seeking early referral own professional relationships as where it has been Each day, choose a time when your child is in a good mood, turn off the a result of the group with shown to be effective? increased collaboration and television, remove as many distractions as possible, so that he can concentrate fully on the activity youre sharing. information sharing. Do I emphasise At present we are involved in quality over quantity Parent Goal our fifth early intervention to make goals more I am going to try to remember to switch the radio off more. group, but each group has been realistic? altered in some way. As a result Do I give carers of our observations, professional Group 5 - Making Sounds sufficient opportunity liaison and parental suggestion, we now have a structure in which to discuss topics in Sound Making we are confident: general before asking The more fun your child gets from making sounds and noises of all sorts, a. Two home visits them to set specific the more she will make them. This means she gets lots of valuable pracContact with families prior to a goals? tice in before the time for real speech comes. group starting ensures a clearer perception of the aims of the copy the sounds and add new ones group and therefore a higher attendance. eg. if she says mama say mama, meme back b. Group size and age limitations Our first group included all preschool children Parent Goal with Down Syndrome from Manchester. This Ahmed babbles a lot but he tends to only use dedede. We will try to encourage different huge range of age and ability did not prove suctypes of babble sounds. cessful, so we now have smaller groups (dependParent Goal I am going to see if Joe will learn that the noise of the microwave means dinner time.

Reflections

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...RESOURCES...RESOURCES...

We explain the benefits of early intervention, and also introduce the concept of signing as part of total communication.

Paediatric dysphagia assessment


Two speech and language therapists have developed an observational dysphagia assessment for children over two years. Judi Hibberd and Jeanne Taylor believe they have achieved a package that facilitates thorough, efficient, flexible and accurately documented assessements. They stress only those trained in paediatric dysphagia should use the assessment and only those with further training in the use of cervical auscultation should use that section. The assessments 11 sections include non-oral, oroaversion and meal observation, and there are summary sheets for other professionals. Jays Observational Assessment of Paediatric Dysphagia - information from Judi Hibberd, tel. 01203 422977, e-mail MJJ.Hibberd@btinternet.com

Bad back?
ing on numbers referred) of children under the age of 18 months. c. Delivery and amount of information We are now much more informal in our presentation and we try to limit information to quality not quantity. d. Signs Initially we were too enthusiastic and presented too many signs. Now we have approximately 20 basic signs that we use throughout the six month period. e. Handouts Our first set of handouts have been re-written with the assistance of speech and language therapy colleagues. f. Goal-setting When we have discussed the topic of the month, we ask each family to identify one specific goal for themselves to work on over the coming months. Parents are usually very accurate at identifying the next developmental step following our discussion of the topic. We explicitly discuss how this aim can be addressed in a practical way in the context of the particular familys daily routine. (For excerpts from our handouts which trigger discussions and examples of the goals families have set themselves, see figure 1.) We return to these goals next time and together we talk about the degree of success experienced. We have found that parents are very supportive of each other and often offer each other practical ideas. These changes suit the present group but we anticipate alterations in the future. At the end of each six months we ask the parents to complete a questionnaire to provide us with qualitative data about their perceptions of the group. We have been encouraged by suggestions and comments, including Very reassuring - I know I am doing the right things; We have got some idea of what to expect, and when; I learned how to sign and help my child to try and sign. The signs related quite well to things he does at home. As a result of the success of the first group we decided to run a second group. This was for children aged 18 months - 21/2 years who were showing potential for more structured language and signing input. We have now completed two cycles of this group with successful outcomes. We have also provided training sessions for our own speech and language therapy department so that all members of staff are aware of early information given to parents. Other professionals are also aware of the advice we provide and support our approach in their contact with parents. Robert Robinson and Karen Bailey are speech and language therapists with Mancunian Community Health NHS Trust. Contact number: 0161 248 1235. A new leaflet timed to coincide with European week for Safety and Health gives advice on managing back pain in the workplace. Back to Work from Health & Safety Executive, tel. 020 7717 6000.

Last chance?
The book Aphasia - A Social Approach may be put out of print at the end of the year. For now, it can be ordered through book shops or from Customer Services, Stanley Thornes Publishers FREEPOST SWC0506, Cheltenham GL50 1BR.

References
Chapman, R. (1995) Language Development in Children and Adolescents with Downs Syndrome. In Fletcher, P. and MacWhinney, B. (Eds) The Handbook of Child Language. Oxford Blackwell. Fowler, A. (1990) Language Abilities in Children with Downs Syndrome:- Evidence for Specific Syntactic Delay. In Cicchetti, D. and Beeghly, M. (Eds) Children with Downs Syndrome. Cambridge University Press. Kumin, L. (1996) Speech and Language Skills in Children with Downs Syndrome. Mental Retardation and Development Disabilities Research Reviews. 2; 109-115.

Kids on the net


Many internet sites now provide interactive educational material suitable for young children. These include: www.funwithspot.com - based on Eric Hills Spot the dog and aimed at children aged from 26 years. Includes an area for parents and teachers. www.peterrabbit.com - celebrating the works of Beatrix Potter.

Clear speech
A booklet explains a technique hearing people can use to enable hard of hearing people to follow conversations more easily. The Clear Speech guide from Cubex, an independent hearing aid audiologist, emphasises the need to talk in a clear and concise manner to maximise the benefits of a hearing aid. Rather than suggesting you speak more loudly or slowly, the message is to speak clearly and precisely, producing each word as accurately as possible without missing parts or endings. Exercises are included to help people learn the technique which is used routinely by the companys staff as part of their patient care service. For a copy of the Clear Speech guide, send an SAE to Cubex Hearing Centre, 25 New Cavendish Street, London W1M 8LP, tel. 020 7247 0367.

Resources
MAKATON nursery rhymes video from the Makaton Vocabulary Development Project, www. (10 & 3.50 p+p), tel. 01276 61390. Libby Kumin (1994) Communication Skills in Children with Down Syndrome - A Guide for Parents. Woodbine House. ISBN 0933 149530, 12.50. Downs Syndrome Association, www.dsa-uk.com, tel. 020 8682 4001. Scottish Downs Syndrome Association, www.sdsa.org.uk, tel. 0131 313 4225. DOWNSed (The Down Syndrome Educational Trust), www.downsed.org. Prefer contact by e-mail, but tel. 023 9282 4261.

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how I

manage
Read this if you: have to juggle the needs of different client groups seek a balance between central and local services want to work in a multidisciplinary way
Margaret White is a specialist speech and language therapist with adults for Central Nottinghamshire Health Trust.

disorders

progressive neurological
The symptoms of progressive neurological disorders can strike at any age and are unpredictable and variable. While some are well known Parkinsons disease, motor neurone disease, multiple sclerosis, muscular dystrophy - many clients have similarly debilitating undiagnosed conditions, where there is even less certainty over the disease progression and prognosis. How do we meet the fluctuating communication and swallowing needs of these clients? Would more involvement with the voluntary sector help? Can we achieve a multidisciplinary approach? Are clients being referred to us, and at the right time? Do we have the best balance between centralised or acute and local or community services? Three therapists working in different environments explore some of the issues.

Christine McCormick is a specialist speech and language therapist at the regional Royal Belfast Hospital for Sick Children.

Lucy Freeman is a specialist speech and language therapist for Dorset Healthcare NHS Trust, based at the Royal Bournemouth Hospital.

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orking in a small district general hospital makes the management of progressive neurological disorders extremely difficult and challenging. As a small hospital suffers more than most from lack of specialised professionals, everyone is a generalist yet also has to be expert in each form of disability encountered. In our area, we have a higher than average incidence of progressive disease, and especially appear to have many undiagnosed problems. Some of these may eventually turn out to be a specific disorder, but others never do. How can we predict and plan for future input when it is uncharted territory? It is often frustrating to see how little we can do from a purely individual therapeutic viewpoint, and it may be that multidisciplinary working across NHS, social services and voluntary sector boundaries is the only way forward, with speech and language therapists working in a consultative capacity to educate and inform other professions and sectors of health care, as they must educate and inform us. This does not mean that any therapy discipline ignores the benefits of specific therapy techniques, but a team can only work effectively and come to a conclusion about how best to help clients if they know and understand each others expertise and limitations. Only 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. We need to keep up-to-date with research in the area and educate ourselves not only on speech and language therapy provision but the diseases themselves, patients and carers views, NHS initiatives and voluntary agencies approaches, so that our understanding can lead to an informed opinion about the development of our role. Managers have to be approached not with moans or demands, but with clear, feasible possibilities matched to local need, using all documentation possible; for example, Health Improvement Plan, National Plan, disease-specific guidelines from the voluntary societies, and anything else which supports the idea. We need to be flexible, utilising new ways of service provision and new areas of funding, and opening as many cans of worms as we can find. McMahon & Thomas, for the Parkinsons Disease Society, have developed a useful four stage scale for looking at services which may be required during the course of Parkinsons Disease - Diagnosis, Maintenance, Complex, Palliative - but this can also be used for looking in a structured way at the overall approach to progressive diseases:

sidered seriously. The answer is better cooperation and coordination of services and every individual therapist can make their own contribution to this. Through the Motor Neurone Disease Specific Interest Group in our area I have met many different professionals from the voluntary, social services and hospital sectors. I would highly recommend that therapists join one in their area, and together tackle their particular local difficulties of service provision. Our group is working to target GPs to explain why early referral is essential to offer support and explanation during progression of the disease, and to anticipate problems and be ready to offer advice and help at the most opportune moment. We are aware that getting messages to GPs is not easy and are therefore offering to send representatives from the group to meetings to talk about motor neurone disease. The group is also pursuing contact with the consultant responsible for many of the diagnoses in the area to see if closer contact can mean earlier referrals. Also, as there is no central point of diagnosis/referral, we will be auditing the service and hopefully setting up a system to redress this to discover accurate numbers of sufferers. Earlier and easier patient contact and inter-agency working is now happening due to the networking between group members and the increased understanding of roles. The recruitment of a Parkinsons Disease Specialist Nurse for our area has made a tremendous difference to the level of service provided. These nurses are a special breed who are infinitely knowledgeable about the disease and can give lots of information on any aspect of it. Ours organises patient information programmes in which all the therapies are involved, works with the consultant, visits all new referrals, and is very good at making referrals to speech and language therapy. We are working together with other professions on our vision of a multidisciplinary assessment and therapy clinic which keeps coming to a grinding halt due to many Trust changes in our area, but we continue to try and move forward, small steps at a time.

territory
in an area with

Uncharted

Margaret White works higher than average incidence of progressive disease. She believes greater multidisciplinary and inter-agency working is the key to better services for diagnosis, maintenance, complex cases and palliative care.

2. Maintenance
In the quickly deteriorating diseases, maintenance is not usually possible, and most important is keeping one step ahead and anticipating the problems approaching. However, the use of specific therapy techniques in slowly progressing problems may produce noticeable improvement - but maintenance of this is difficult. This can be alleviated to some extent by group maintenance; once initial therapy has improved the problem as far as possible, patients attend small group communication practice sessions. I have run groups for patients with different aetiologies and they have all had fun together and derived great benefit from them.

Joanne Marks

1. Diagnosis
Diagnosis of progressive neurological disease is often made at the large teaching/acute hospitals in the surrounding areas, and it is then up to the local GP to decide referrals. Unfortunately, early referral to therapy disciplines is not always a priority, and it may be many months before we become aware of the patient, by which time the problems have increased and multiplied. With a small speech and language therapy team, we are unable to offer a community/domiciliary service, so often try to refer on to the rehabilitation unit. Two difficulties then arise. Firstly, this unit is unable to accept those over 65, which leaves us struggling to provide a service for older people, and secondly, referrals are not always made - often due to the outmoded view that a progressive disease, by its very nature, cannot be treated. The option of sitting back and saying that nothing can be done about these difficulties is not one which should be con-

3. Complex
This is where the multi-professional/multi-agency working becomes very important, especially in a devastating shortterm deteriorating illness like motor neurone disease. For example, we have discovered that at one point some patients had as many as nine different people visiting in one day. We are hoping eventually to have a central organiser who can eliminate this, reducing the anxiety and stress on patient and carer. Also, those more closely involved with the patient can make a quick and easy re-referral to other team members should the necessity arise. Within a team there is not only support for patient and
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how I

carer but also for each other. Working with progressive disease, with its inevitable conclusion, can be hard for everyone, no matter how much you try to remain uninvolved.

right to expect the service, whether this comes early in the illness or near the end, and the carer has the right to be supported by the full team in any decision which they may have to make alone.

4. Palliative References
Do we have a role here? If we are committed to working with these problems, then we cannot suddenly switch off. There will come a time when the patient and carer need to discuss and decide on issues about which we are expert, for example percutaneous endoscopic gastrostomy (PEG) feeding and alternative and augmentative communication. They have the MacMahon, D.G. & Thomas, S. (1998) in Thomas, S., MacMahon, D.G. & Henry, S. (1999) Moving and shaping - the future. Commissioning Services for People with Parkinsons Disease, p.14. Parkinsons Disease Society UK. Primary Care Task Force.

T
Shared

care
offers the best neurological

A regional centre facilities to children with progressive disorders and their families, but some intervention may be offered more appropriately and conveniently closer to home. Christine McCormick shows how a balance can be achieved.

he impact of progressive neurological conditions upon the families of affected children is immense (Brett, 1997). Working with these children and their families is both emotionally demanding and therapeutically challenging. This is particularly so when the condition is undiagnosed, and the prognosis uncertain, or during a period of deterioration. The challenge for us as speech and language therapists is to provide a practically supportive management programme for the child and their family. It is important to recognise that one of the management options is not to intervene. I work as part of a broad multidisciplinary team in Northern Irelands regional paediatric teaching hospital. The paediatric speech and language therapy service comprises myself and two colleagues (1.7 whole time equivalent), with 0.7 dedicated to the regional cleft lip and palate clinic, leaving 1.0 to cover a largely acute paediatric dysphagia and neurology caseload. We have direct access to Northern Irelands two paediatric neurologists as well as neurosurgeons, a paediatric neurology specialist nurse, experienced physiotherapists, a paediatric occupational therapist, psychologists, play specialists and very skilled nursing staff. There is a twelve-bedded specialist paediatric neurology ward and a multidisciplinary meeting takes place on a weekly basis. This allows for case discussion and provides a good opportunity to raise issues with the whole team. On-site access to members of the team results in easier and more effective and flexible patient management. Many of the children come into the hospital for a series of investigations and are assessed by the multidisciplinary team when they are either in the preliminary stages of neurological assessment and diagnosis or are presenting with changes in their neurological condition. Conditions they might have include Kearns-Sayre Syndrome (see case example), Dyskeritosis Congenita, Menkes Disease and Ataxia Telangiectasia. Our paediatric neurologists report that as many as 50 per cent of paediatric neurological conditions have no definitive diagnosis. Brett (1997) points out that uncertainty as to the presence of abnormal findings and their symptoms in terms of neurological dysfunction is not uncommon in dealing with children. He concurs that classification of neurological diseases in children is very difficult. The paediatric speech and language therapy service assesses and reports on communication and/or swallowing function. Our assessments provide baseline measures which can contribute to the overall diagnostic process.

those with developmental disorders, the range of causes of loss or deterioration of language in childhood is wide. As with all communication and swallowing disorders, appropriate assessment and diagnosis is essential to underpin the management programme. This is not so straightforward with this client group, largely due to the lack of formal assessment material specifically designed for them. Tests such as the Childrens Acquired Aphasia Screening Test (Whurr & Evans, 1986), Test of Word Finding (German, 1986), TROG (Bishop, 1982) and subtests of the CELF-R (Semel et al, 1987) supported by linguistic transcription, analysis and profiling provide a picture of the childs language abilities. Alongside our own oral appraisal, the Frenchay Dysarthria Assessment (Enderby, 1983) is quite accessible, with some creativity and adaptation required for younger children. We are fortunate to have access to Electropalatography, Electrolaryngograph and Speechviewer which provide instrumental assessment and enhance therapy with dysarthric / dysarthraphonic patients. We also use React software for multimedia language work. Concomitant feeding and swallowing difficulties that arise are assessed using cervical auscultation and the Dysphagia Severity Score System (Dick, 1998). The aspiration index assessment we use has been developed from the work of Eicher (1994). Videofluoroscopic Swallowing Studies are performed and adjustments made to feeding regimes in liaison with the dietitian, childs consultant and family. We are developing the use of cervical auscultation combined with videofluoroscopy, and anticipate the introduction of Fibreoptic Endoscopic Evaluation of Swallowing (FEES) which is particularly useful where frequent re-evaluation of the swallow is required (Leder & Karas, 2000). We have a selection of low-tech communication aids, including Alphatalker and Servox, used to ease immediate communication difficulties during acute admissions. We also have a range of switches to establish access to a variety of software programs. Where verbal communication skills are becoming compromised we can explore alternative and augmentative communication options with the regional AAC therapist. However, parents are frequently happier to interpret their childs communication rather than seek other solutions, particularly in the terminal stage of an illness.

Decisions
Following a course of in-patient therapy, or after initial outpatient assessment, a decision is made regarding longer-term management. All decisions are made in liaison with the child and family, the paediatric neurology team and the local speech and language therapy team. The wishes of the child and family are paramount in thera-

Essential
Lees and Urwin (1991) recognise that, although the number of children with acquired language problems is smaller than

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py planning, with particular reference to location. Some families prefer to be seen by the regional team as they will be attending the hospital for regular reviews and therapy with other professionals. Other families prefer not to have to travel and wish to be seen locally, and some agree to shared care where we review every 6-12 weeks and update progammes which are monitored locally. Shared care depends on clear role definitions and good communication and liaison between the regional services and the local speech and language therapy team; it can work very well.

Case example: Thomas


Thomas was first seen by neurology aged 11;01 when he presented with progressive hearing loss, progressive ptosis, progressive ataxia and tremor, fatigue, dysphagia, visual difficulties, and cardiac problems. He had been referred by his local paediatrician as problems with hearing and ptosis noted four years earlier were getting worse. Thomas early development was normal, but his mother noticed he was always unsteady on his feet and had less stamina than his peers. At age 7 he required glasses for his deteriorating vision which continued to worsen, resulting in reduced visual acuity and night blindness. At age 9, bilateral hearing aids were fitted due to progressive hearing loss. One year later a consultant ophthalmologist diagnosed Retinitis Pigmentosa and bilateral ptosis, and queried Kearns-Sayre Syndrome. Educationally Thomas was a poor achiever and, at age 10, transferred to a partial hearing unit in a mainstream primary setting. At secondary level, he moved to a school for visual and hearing impaired pupils. Neurological and genetic evaluation (including muscle biopsy) confirmed the diagnosis of Kearns-Sayre syndrome, a progressive mitochondrial disease with neurodegeneration. This condition affects a number of major systems, including central and peripheral nervous systems and ocular, endocrine and cardiac systems. Age of onset is variable and degeneration is relatively slow. Most children with this condition die in their late teens/ early twenties.

References
Bishop, D. (1982) Test for Reception of Grammar. Medical Research Council. Brett, E.M. (1997) Paediatric Neurology (3rd Edition). Churchill Livingstone. Dick, J. (1998) Dysphagia Severity Score System: clinical outcomes in paediatric dysphagia. International Journal of Language and Communication Disorders, Proceedings of 1998 RCSLT Conference 33; 268-273. Eicher, P., Manno, C. & Fox, C. (1994) The impact of cervical auscultation on accuracy of clinical evaluation in predicting penetration / aspiration in a pediatric population. Unpublished. Enderby, P.M. (1983) Frenchay Dysarthria Assessment. College Hill Press. German, D. (1986) Test of Word Finding. Riverside Publishing Company. Leder, S. & Karas, D. (2000) Fiberoptic Endoscopic Evaluation of Swallowing in the Pediatric Population. Laryngoscope 110: July. Lees, J. & Urwin, S. (1991) Children with Language Disorders (Ch. 9). Whurr. Semel, E., Wiig, E. & Secord, W. (1987) Clinical Evaluation of Language Fundamentals. Psychological Corporation. Shprintzen, R. (2000) Syndrome identification for Speech and Language Pathology: an illustrated pocket guide. Singular. Whurr, R. & Evans, S. (1986) Childrens Acquired Aphasia Screening Test. Whurr.

Focus
Thomas presented to our service with dysarthria and dysphagia, typical of his condition. Language generally only becomes affected once there is sustained seizure activity, which results in dysphasia and deterioration of language (Shprintzen, 2000). As yet, Thomas has had no seizures and no concern has been expressed about his language. The Frenchay Dysarthria Assessment revealed areas of deficit which we attempted to work on, but with great difficulty due to Thomas visual and hearing impairments. His lack of motivation / understanding of what we were trying to achieve in therapy meant that dysarthria therapy was unsuccessful. As Thomas remains reasonably intelligible and can understand what is said to him by his family and familiar people, our focus has been his ongoing dysphagia. Initial swallowing assessment indicated no difficulty with liquids but problems chewing harder solids and reduced laryngeal elevation during swallowing. Advice was given regarding texture modification and manoeuvres. As there was no feeding service in the school, and the local paediatric team were not happy to take responsibility for Thomas care due to the degenerative nature of his condition, it was agreed that we would regularly review and advise the school therapist and staff on management of feeding difficulties. This system worked well for nine months until risk management issues arose in the school regarding choking and the supervision of Thomas at mealtimes. A link therapist specialising in adult dysphagia was identified by the local unit to liaise with the hospital and school with regard to the dysphagia management. She was able to observe Thomas feeding in school and report back. When there were concerns in school, the link therapist liaised with the regional centre and local medical and educational services to arrange further assessments or changes to management plans. As Kearns-Sayre is a progressive condition and deterioration is slow, Thomas is reviewed every six weeks at the hospital, with increased input as necessary during admissions or in response to a deterioration in his speech and / or swallowing.

Other resources
AlphaTalker is available from Liberator, tel. 01476 550391, www.liberator.co.uk Electropalatography and Electrolaryngograph contact Laryngograph Ltd, tel. 0207 387 7793, www.laryngograph.com React from Propeller Multimedia, tel. 0131 446 0820, www.propeller.net/react Servox Inton from Kapitex Ltd, tel. 01937 580211 Speechviewer from Don Johnston Special Needs, tel. 01925 241642

SPEECH & LANGUAGE THERAPY IN PRACTICE WINTER 2000

27

how I

An everchanging

story

Adults with progressive disorders benefit from a therapist who is flexible with their time, but caseload pressures limit opportunities to vary the pattern of our involvement. Lucy Freeman addresses this by planning ahead and involving other professionals and specialists.

s therapists working with adults with acquired neurological disorders we may mentally lump together our clients with progressive neurological diseases as a part of our caseload distinct from those with conditions of sudden onset. However, a brief analysis of this group reveals an extremely diverse range of conditions. At any one time we may find a young adult facing the uncertainties of multiple sclerosis, elderly people with Parkinsons disease and possibly other complicating medical conditions, and people in middle age facing the devastating diagnosis of motor neurone disease. We may also have one or two mystery cases whose condition remains undiagnosed despite extensive investigation. In fact, they form a heterogeneous group of people linked together in facing a range of physical, communication, sensory and cognitive difficulties which will diminish their abilities to live their lives independently. Because the course of these diseases varies, so must the pattern of our involvement with the clients; it may extend over many years either at a constant low intensity, or with rereferral being made at crisis points, or over short intensive periods according to need. Working in the setting of an acute hospital with a demanding in and out-patient caseload and no separate, dedicated community or domiciliary service, meeting the needs of this client group can seem very challenging. All too often, people with progressive neurological disease end up with crisis management or - worse - after crisis management when, by the time the speech and language therapist arrives on the scene, the client has struggled through without help.

Adaptation
I plan ahead where I can, liaise with who I can, and use the specialist skills of others when I can; these nuts and bolts enable me to manage the competing demands of clients on my caseload. But when we are face to face with clients with progressive neurological disease what we need most is time and flexibility. What comes up in a session may be very different from what we had anticipated. All our clients have a story to tell but for the people with progressive neurological disease it is an everchanging story of varying rates of loss and adaptation to diminishing function and independence. As we are dealing with complex conditions which affect a wide range of functions a large number of professionals will often be involved. Communicating with different professionals coming from different services or working for different NHS trusts is not always straightforward compared to the easy networking that takes place within a hospital based team, and may be very time consuming. Within my own trust the appointment of a Parkinsons Disease Specialist nurse who is based at the hospital but spends a great deal of her time doing domicilary visits has gone some way towards making care of this group of clients more coordinated and provided a key person who can monitor clients progress at home. The increase in the number of specialist nurses for people with progressive neurological disease is a positive development, helping to bridge the gap between acute and community services.

Links
We are also able to make use of other existing services within the trust to monitor patients progress, arrange reviews and assess suitability for more intensive intervention. One of these is a respite unit attached to the rehabilitation hospital which is used by many people with multiple sclerosis, and another is the day hospital which serves many of our more elderly clients with Parkinsons Disease. The establishment by our department of a monthly speech maintenance group now run by the speech and language therapy assistant for people with Parkinsons also allows for monitoring over time. Links with the patient organisations provide another feeler into the community. Presenting with complex swallowing and communication problems, people with progressive neurological disease demand a range of skills from the speech and language therapist. So, for example, access to a specialist member of staff within our county wide team who can, if necessary, advise, assess and take on some of the training in the use of a communication aid, is a useful resource. Providing a listening ear for their concerns can be what the client appreciates most about our involvement and what we must strive to provide.

Priority
How do we fit the needs of those out there in the community living with the diagnosis of a fluctuating but ultimately deteriorating condition into a caseload dominated by patients with acute onset conditions right on our doorstep? How can the patient with an insidious condition compete for priority with the ever-present demands of our acute caseloads? With all available outpatient slots often filled up several weeks in advance, providing a flexible and timely response to the client may be impossible. Some progressive neurological clients do fit easily into a pattern of outpatient therapy appointments and for them this may be beneficial and preferred, confirming their continuing independence. (The wife of one client declined my invitation to accompany her husband to appointments on the grounds that speech and language therapy was somewhere he could get to without being accompanied by her!) Planned reviews booked well ahead can be easily accommodated. For others, however, a domiciliary service may be needed but may be very difficult to provide where they are in competition for limited therapist time with other clients who are more mobile and can travel to the therapist.

PRACTICAL POINTS
1. Multidisciplinary and inter-agency working is time-consuming but essential. 2. Clients and families need time, choice of location and a listening ear. 3. A flexible pattern of management is required in response to individual need. 4. Be prepared for the emotional demands of working with this client group and accept team support. 5. Consider management in terms of diagnosis, maintenance, complex cases and palliative care; one option is not to intervene. 6. Shared care can overcome problems with accessing specialist services. 7. Specific interest groups, specialist nurses and therapists and patients organisations are invaluable links. 8. Adapt assessment material as appropriate to client need. 9. Use national policy documents to argue for service improvements. 10. Consider how early referral and centralised data collection can be facilitated.

28

SPEECH & LANGUAGE THERAPY IN PRACTICE WINTER 2000

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MY TOP RESOURCES
Wendy Tuson, 1. The C.O.R.E. AAC Curriculum
A creative approach to assessment of those needing to use augmentative and alternative communication is vital, but there are only a small number of published assessments to guide us. However, a useful publication is the C.O.R.E. AAC Curriculum. It provides an ordered way of putting together relevant information for each individual and helps to inform the ongoing process of assessment and development of any AAC system. It is also a useful tool for informing parents where to begin assessment and where to go with therapy. From Scope, tel. 020 7636 5020.

6. Signalong Manuals
The signing system we use is Signalong. There are a number of manuals which are easy to follow. They are topic based which makes looking for signs less time-consuming. The manuals give an overview of signing techniques and show graphic illustrations pertaining to the basic hand shapes, directions and positions. The diagrams are clear and the instructions underneath regarding how to make the sign are easy to follow. This is particularly useful as staff teams can have their own manuals to look up signs should they wish to do so. The manuals are invaluable during staff training and help change staff attitudes to and perceptions of signing environments. It helps to have the manuals available for backup during staff training if you have forgotten how to make the sign! Signalong, tel. 01634 819915 - www.signalong.co.uk

Caroline Nicholson, Hermien Nieuwoudt, Debbie Charles and Morwenna Larkin


(pictured left to right) all work for Newham Community Health Services NHS Trust across a range of care group settings including community clinics, special schools, the Child Development Centre, adult acute services and the Community Team for Adult Learning Disabilities. They share an interest in augmentative and alternative communication (AAC) and meet regularly as a working party to discuss and develop their service. The majority of their clients have severe to profound learning difficulties.

9. Other Voice Output Communication Aids


Gaining listener attention using speech for the first time can be very empowering for an AAC user. Some of our clients, particularly teenagers, can feel acutely different from their peers and may welcome the experience of interacting with others via speech. For the first time they may be able to speak when taking part in activities such as storytelling in schools or the local pub quiz. It is essential to have Voice Output Communication Aids (VOCAs) available for clients to use as required. Our service has a variety of mainly light tech VOCAs. These range from the single message capacity of the BIGmack through to fixed location aids such as the MessageMate and SpeakEasy. Some apparently ideal candidates for VOCAs 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. MessageMate - UK distributors include Cambridge Adaptive Communication, www.cameleon-web.com SpeakEasy - UK distributors include Liberator, www.liberator.co.uk

2. Multidisciplinary working
Teamwork with the client, carers and a range of professionals is vital to the success of augmentative and alternative communication. In Newham, with its diverse population, our bilingual co-workers are indispensable. Sometimes more specialised input is required and for us that means referring to the Assistive Communication Service at Charing Cross Hospital for adults, and the Wolfson Centre at Great Ormond Street Hospital for children. Both provide specialist assessment, support and advice, and our clients get the opportunity to try out different communication aids appropriate to their needs. ACS, Charing Cross, tel. 020 8846 1057; Wolfson Centre, tel. 020 7837 7618.

7. The BIGmack
There are a number of switches on the market, but one of our favourites is the BIGmack. It is an easy to use single switch with recording modality. Any message of less than 20 seconds can be recorded and played back by pressing the switch. It is especially helpful for social integration of non-verbal clients, for example using it to: gain attention; participate in an activity or conversation; answer the register; join in storytelling. UK distributors include QED 2000 Limited, 99, www.QEDLtd.com Use of switches leads us on to.....

3. Communication Matters
Communication Matters, the UK Chapter of the International Society for Augmentative and Alternative Communication (ISAAC) is well worth joining if you want to keep up-to-date with developments in AAC. They publish an excellent journal, run an annual UK symposium and generally support and promote the use of AAC. www.communicationmatters.org.uk

10. AAC Device Review


This book reviews most of the Voice Output Communication Aids (VOCAs) currently on the market. Each aid is reviewed in great detail and an outline of its primary usefulness considered. It is written in an easy to read style with prices and contact addresses for manufacturers. Although we always access our Regional Specialist Centres when considering clients for more sophisticated aids, this book is a valuable source of information. We would particularly recommend it if your department wishes to purchase a VOCA as a resource. You can see which aid/s would be useful for the greater number of your clients, whatever their differing abilities and needs. Alternative and Augmentative Communication Device Review by Gillian Rumble and Janet Larcher, VOCAtion, ISBN 0953375803, 12.

8. Battery operated equipment


Almost anything which has a battery can be adapted to be activated by a switch. This encourages switch usage but also greatly increases a clients awareness of their effect on the environment. There are a range of such resources in catalogues and local shops, from jumping rabbits to radios and fans. Toys can be adapted by a battery adapter (Z8) or you can buy a switch adapted toy - but make sure they fit the switches you have. If they dont fit, then an adapter plug is very handy; we got one from a local electrical shop for 60p.

4. Cameras
The instant Polaroid is rapidly being replaced by the digital camera. This makes it easy to set up communication books which involve objects, activities and people from the clients everyday environment. Video cameras provide an excellent opportunity for feedback for therapists, school staff, carers and parents. In particular, this helps to develop a clients active communication.

5. The Picture Communication Symbols Manual (PCS)


This excellent manual has approximately 3000 picture symbols and is much used by Newham speech and language therapists. We also have the wordless edition and the stickers format. The sections are categorised into social / people / verbs / descriptions / food / nouns, which makes it easy to use. The symbols are displayed in three different sizes, 3 /4, 1 and 2. We also have access to the computer software (Boardmaker) and the paint programme in Windows is useful as you can make up symbols and paste them into the Boardmaker directory. See www.mayer-johnson.com - UK distributors include Don Johnston Special Needs, tel. 01925 256500.