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Autumn 2007
Off We Go!
Strategic issues
Books as preparation
PLUSWinning Ways on awarenessRecommended reading (voice)My Top Resources from a recently qualified therapistHeres one I made earliermore great reader offersand virtual developments at www.speechmag.com
www.speechmag.com
Reader offers
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Speech & Language Therapy in Practice has a copy of the KiddyCAT Communication Attitude Test for Preschool and Kindergarten Children Who Stutter to give away FREE, courtesy of Plural Publishing. The assessment is designed for use with children under the age of six who stammer, and aims to capture their speech-associated attitude. The package includes a manual for interpreting data and a scoring key. KiddyCAT usually costs44.00. To enter the FREE prize draw, e-mail your name and address by 25th October to avrilnicoll@speechmag.com, putting KiddyCAT offer in the subject line. The winner will be notified by 1st November 2007. Further information about KiddyCAT is on Plural Publishings website, www.pluralpublishing.com.
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Transdisciplinary working for children and young people with a communication disability
Autumn07 contents
Autumn 2007 (publication date 31 August 2007) ISSN 1368-2105 INSIDE COVER: Reader Offers From Oral to Written Narrative; KiddyCAT Communication Attitude Test for Preschool and Kindergarten Children. Also see Speechmarks Off We Go! series (p.6) and the Metaphon Games Boxes (p.13).
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Published by: Avril Nicoll, 33 Kinnear Square Laurencekirk AB30 1UL Tel/fax 01561 377415 e-mail: avrilnicoll@speechmag.com
COVER STORY: OFF WE GO! An early indication of one of Stephens strengths came during that long first year. As Avril says, It is extra hard to try and bond with a new baby who is sick, when you are in hospital and when there are no smiles to encourage you. I wanted ways to communicate and connect with him. We are book mad in our house and from early on Stephen and I loved the intimate connection that books gave us. Books are our special time. Since then books and visuals have proved to be really useful tools to support communication and reduce frustration. Going to the hairdresser, the supermarket, a restaurant, the doctor, the dentist and the swimming pool can be overwhelming experiences for children with intellectual disabilities. Inspired by her son Stephens love of books, Avril Webster created a series to enable him to deal with everyday situations. Here she tells editor Avril Nicoll how, with the support of parents, speech and language therapists, an artist and teachers, the books are now available to help other families.
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VIRTUAL DEVELOPMENTS While websites represent a significant investment, they also provide an opportunity for a business to express what makes it different. Editor Avril Nicoll explains how the newly overhauled speechmag website could benefit you.
BUILDING PYRAMIDS ON PLANET ZOG! We are great believers in spotting any potential challenges on the horizon and proactively seeking means and methods of addressing them before they come fully to fruition, or before someone else comes along and decides on our agenda. Nikki Joyce and Jan Broomfield on the redesign of a paediatric speech and language therapy service, now based in local communities and offering equitable provision appropriate to clinical need.
Design & Production: Fiona Reid, Fiona Reid Design Straitbraes Farm, St. Cyrus, Montrose Angus DD10 0DS Printing: Manor Creative, 7 & 8, Edison Road Eastbourne, East Sussex BN23 6PT Editor: Avril Nicoll, Speech and Language Therapist
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EVER THE TWAIN SHALL MEET Controversy continues regarding the efficacy of oral motor therapy and its role in speech development; consequently, we should continue to elaborate our knowledge base through research. We were interested to note that most of the improvements noted on re-assessment and parental feedback were not related to speech. Concerned that their speech and language therapy expectations for children with severe cerebral palsy seemed very far apart from those of the parents, Trish Morrison and Susanne King set up a small pilot project.
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11 RECOMMENDED READING Voice / chronic cough ASSESSMENTS ASSESSED Our series of in-depth reviews continues with the Phoneme Factory Phonology Screener, CARS (The Childhood Autism Rating Scale) and Comprehensive Aphasia Test (CAT). HERES ONE I MADE EARLIER The tourist information game; Unpick the crowd shout; Clairvoyance REVIEWS Outcome measures, the elderly, dementia, prioritisation, self-esteem, facial paralysis, drama, AAC, Aspergers Syndrome, the NHS, cognitive psychology and dysfluency.
Subscriptions and advertising: Tel / fax 01561 377415 Avril Nicoll 2007 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.
WINNING WAYS: AWARENESS IS ALL THAT IS NEEDED As I posed for a picture my husband let the camera - my camera - slip out of his hands. It fell on some leaves, stayed there for a tantalising second and crashed on down the full 200 feet of tumbling water. How glad I was to have read the wise words on attachment. A deep breath, a rueful smile and a shoulder shrug would not have been my usual response, but I have learned that my happiness does not depend on a camera, or carefulness. It was an accident. Reflecting on the role that attachment plays in our choices, life coach Jo Middlemiss finds awareness is all that is needed.
TRIAL AND TRIBULATION Despite our recommendations as to the level of modification of drink required for each individual, we have widely observed that the drinks produced by carer or staff quite often bear little resemblance to the suggested description. Although a portable viscometer proves unsuitable in their efforts to ensure consistency of drink thickening for adults with learning disabilities, Margaret Margerison, Adrienne Fenton and Ros Hunter are now more aware of issues they need to address.
Cover photo of Michael, Stephen, Avril and Rachel Webster by Paul Dorrell (see p. 4)
24 HOW I PROVIDE A PAEDIATRIC DYSPHAGIA SERVICE Our two contributors describe how their different paediatric dysphagia services have evolved to suit local need. One is community-based, while the other hospital-based service crosses the acute and community sectors. (1) TIMELY, EFFICIENT, INTEGRATED AND HOLISTIC? RCSLT Clinical Guidelines for disorders of feeding, eating, drinking and swallowing state that services should be timely, efficient, integrated and holistic (2005, p.63). Joanna Manz considers how the community paediatric dysphagia service she has developed in a rural area measures up to this benchmark. (2) PARENTS AT THE CENTRE Rosemary Parker charts the development of the Torbay Combined Feeding Clinic from its conception 12 years ago, via an audit in 2002 to a recent parental questionnaire, and outlines her hopes for its future.
BACK COVER: MY TOP RESOURCES When I began this article I was a newly qualified therapist! A year further down the line, its been interesting to look back and see what Ive learned. Juliet Condon provides speech and language therapy to day centres and residential homes for adults with learning disabilities and to a forensic service.
NEWS
The government in England wants to ensure current policy is implemented so that more sustainable and seamless services give people with learning difficulties and / or disabilities the best chance to achieve their full potential in education and the workplace. A cross-government strategy document Progression through Partnership identifies a joint five year programme of change which aims to concentrate on the quantity and quality of further education and training and how it is funded. Anne McGuire, Minister for Disabled People, said, "People with a learning disability have one of the lowest employment rates of any group of disabled people. The launch of this Strategy will play an important role in extending opportunity to this group of people and ensure that greater numbers of those who can and want to work have the chance to do so." New Cross-Government Strategy for Supporting Learners with Learning Difficulties and/or Disabilities available on www.dh.gov.uk (policy and guidance)
Dementia report
A National Audit Office report on dementia has drawn parallels between dementia now and cancer in the 1950s when there were few treatments and people were commonly not told the diagnosis for fear of distress. The authors call for greater political focus, an increase in data collection and an end to the stigma. They also recommend the development of a multi-professional protocol for diagnosis and early intervention. The report mentions that swallowing problems can occur in the late stages of dementia and that there is a need for staff training to support people with feeding. It also says that caring for people with severe dementia requires special skills including communication methods. However, acknowledgement of any role for speech and language therapists is restricted to a plea for access to specialist services via community mental health teams to be improved. Improving services and support for people with dementia, www.nao.org.uk
Viki Baker (second right) and her team receive their Innovative Services Award from Trust Chief Executive Lisa Rodrigues (far left)
Speech and language therapist Viki Baker and her team have received a Sussex Partnership NHS Trust Achievement Award for their innovative communication project for people with a learning disability and their families. The East Sussex Kick Start project aims to encourage user and carer involvement in developing and testing all modes of communication - signs, symbols, gestures, objects, touch cues, and electronic aids - as an alternative to speech. The team has taken the show on the road and offered local drop-in sessions, with further events planned across the county. Viki and her team were also instrumental in setting up a partnership project with MENCAP East Sussex Advocacy Scheme. Three local people with a learning disability have been appointed to work as consultants to the service. They will provide advice on easy to read and accessible service information, develop a pool of people to participate in recruitment panels, and interview service users and their carers (in a way similar to 'discovery interviews') to directly inform service improvements and provision.
Inclusive poster
In The Picture is offering a new inclusive poster for early years settings. The Scope project aims to promote the inclusion of disabled children in early years picture books to reduce the isolation that such children experience. Its A2 poster shows groups of disabled and non-disabled children in a fantasy story book setting. 5 each (inc. p&p), www.childreninthepicture.org.uk
Comment:
Accessible computing
Computing and disability specialist AbilityNet has gathered together a full range of training resources on one e-learning site. There are over 20 courses available, ranging from software specific tutorials to generic disability-based guidance. Designed to facilitate independent learning, the courses are modular so students can build up their training at their own pace. The introductory courses are free and access to all the courses, including support from an AbilityNet tutor, is available for 100 per user per year as an introductory offer. The materials can also be accessed as part of a Service Level Agreement which can include consultancy, assessments and loan equipment. This information will be particularly useful to employers wishing to support employees with disabilities and to comply with the Disability Discrimination Act. www.abilitynettraining.org
Strategic issues
This years holiday reading included The Vanishing Act of Esme Lennox, The Memory-Keepers Daughter and Daniel Isnt Talking, where difference, Downs Syndrome and autism respectively along with a historical perspective - are crucial to the plot. Such books challenge readers from a professional background on many levels, as you recognise you were / are / could have been part of a system that is cold, clinical and distant rather than open, questioning and human. The books highlight the pivotal role of champions in any change process. As well as showing how champions are ordinary people who, through their response to life experiences, can achieve extraordinary things, Avril Websters story (p.4) illustrates the rich rewards that can be reaped when professionals engage with the idea of user involvement. Rosemary Parker (p.26) has been championing her combined paediatric feeding clinic for 12 years. Like Joanna Manz (p.24), Rosemary finds putting children and their parents at the centre and acting on their feedback is fundamental to the successful evolution of a service. Sensing the direction of users expectations, Trish Morrison and Susanne King (p.15) chose to go with them into the minefield that is the oral motor controversy. Their experience suggests that the benefits of meeting people in the middle can outweigh the sense of security that comes from choosing to stay in an entrenched position. Put another way, champions also need to think strategically. Nikki Joyce and Jan Broomfield (p.8) look ahead and plan changes rather than having them imposed. With this attitude, their team successfully avoids the trap of attachment (Jo Middlemiss, p.22). Jo explains that being aware of what might be holding us in one way of being is the first step to countenancing a different way. Awareness-raising is a strategic issue, as Margaret Margerison, Adrienne Fenton and Ros Hunter (p. 20) recognised when seeking ways to improve the quality of thickened drinks provided by carers and staff. It follows that we benefit from taking a strategic approach to developing our own awareness; Juliet Condon (back page) finds peer support and clinical supervision invaluable. Being part of a book group raises my awareness of how people including other professionals and parents think, and how this compares with and changes my own attitudes and preconceptions. The new speechmag website (p.7) gives you the opportunity to participate in a virtual book group where we can discuss books that make us reflect on our profession, where it has been - and where it is going. I look forward to your recommendations.
References OFarrell, M. (2006) The Vanishing Act of Esme Lennox. London: Headline Review. Edwards, K. (2007) The Memory Keepers Daughter. London: Penguin. Leimbach, M. (2006) Daniel Isnt Talking. London: Harper Perennial.
AAC awareness
October 2007 is International AAC Awareness month. ISAAC (the International Society for Augmentative and Alternative Communication) is asking interested people to carry out an activity of their choice at a local level to raise awareness of AAC and the needs of users. http://communicationmatters.org.uk
Autism anniversary
The largest school for children with autism in the UK is celebrating its 30th anniversary. The Robert Ogden School in Yorkshire, one of six owned by the National Autistic Society, was pioneered by parents and opened in a different setting with just one child. It has now extended its provision to cater for 125 children, often with very complex needs. www.nas.org.uk
Book party
National Bookstart Day on 5 October will celebrate the importance of enjoying books from an early age with a jungle party theme. Posters, bookmarks and stickers have been designed by Axel Scheffler best known as illustrator of books by Julia Donaldson including The Gruffalo. Families across the UK will be invited to take part in a range of local activities highlighting the fun of book sharing. This will include rhyme times, the appearance of the Bookstart Bear, jungle-themed adventures and song and storytelling sessions. Bookstart aims to help every child in the UK develop a lifelong love of books, encouraging children in the earliest stages of their development to associate books with pleasure. The organisations website includes sections for health professionals and for parents of children with different needs. www.bookstart.org.uk
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Off we go!
Some animals are frightening And some are sweet and kind So lets go to the jungle now And see who we can find (Andreae & Wojtowycz, 1996)
Going to the hairdresser, the supermarket, a restaurant, the doctor, the dentist and the swimming pool can be overwhelming experiences for children with intellectual disabilities. Inspired by her son Stephens love of books, Avril Webster created a series to enable him to deal with everyday situations. Here she tells editor Avril Nicoll how, with the support of parents, speech and language therapists, an artist and teachers, the books are now available to help other families cope.
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SPEECH & LANGUAGE THERAPY IN PRACTICE Autumn 2007
tephen Webster loves the rhyming verses of Rumble in the Jungle in fact, like all his family, he just loves books. But little did his mother Avril suspect when he was born that he would inspire her to author books aimed at helping children with intellectual disabilities cope with the jungle of everyday life. The common themes, simple text and uncluttered, friendly pictures of the Off We Go! series even the short guide for parents and teachers at the back give merely a hint of the story behind the stories. Avrils career in the computer industry was very important to her and, until Stephen was born nine years ago, she had a busy job that involved a lot of travel. Stephen spent most of his first year in hospital and the family was dealing with lots of unknowns would he ever walk or talk? During this time the hospital physiotherapist asked how Avril would feel about becoming a stay-at-home mum. With this decision taken and Michael (6) and Rachel (4) now completing the family, life is very full, and Avril is channelling her creativity in new, wholly unexpected but ultimately rewarding ways. Stephen (9) attends a special school in Limerick, Ireland. He has no specific diagnosis other than that of a moderate to severe intellectual disability but has been functioning at the developmental stage of 18 months to 2 years for quite a time and has significant sensory integration issues. Avril says his neurologist recently floated the possibility that Stephen may become an adult who is around this developmental level. While Avril feels passionate about supporting Stephen to partake in family activities, everyday experiences in the community have been a real struggle. Supermarkets have proved overwhelming and Stephen found the experience of going to the dentist very upsetting. Avrils priority is to build Stephens coping mechanisms and independence.
Intimate connection
An early indication of one of Stephens strengths came during that long first year. As Avril says, It is extra hard to try and bond with a new baby who is sick, when you are in hospital and when there are no smiles to encourage you. I wanted ways to communicate and connect with him. We are book mad in our house and from early on Stephen and I loved the intimate connection that books gave us. Books are our special time. Since then books and visuals have proved to be really useful tools to support communication and reduce frustration. One example is Stephens scheduling board, a visual timetable with word + picture segments showing what he is going to do today.
The highlight of Stephens day is showing his mum his personal newsbook from school. In this book the teacher draws a picture or two of things he has done in school. At home Stephen uses this book to share his school day with his family and this prompts him to initiate conversations, labelling the pictures and occasionally putting two words together. This is a two-way process as Stephen also returns to circle time at school the next day (as do the rest of the class) with a visual record of what he has done with his family in the afternoon. This might involve a picture of an ice-cream, or the playground, or a cutting from a bag of marshmallows. The newsbook includes personal photos and information (my name is Stephen; my mum and dad; my brother and sister) and photos from key family occasions. Avril says the family has dozens of these journals now and its lovely to go back over them. Its like a hardback record making a story of his life and working as a communication tool. Aware that life would be less stressful if Stephen could cope with visiting the dentist waiting happily, saying hello and cooperating in the chair or the hairdresser, or the supermarket, Avril wondered if books might help him prepare for transitions and overwhelming sensory situations. Such books do exist but the Usborne First Experiences series proved too cluttered visually while Scholastics Barney books, which include going to the zoo and to a restaurant, scared Stephen as he does not identify with imaginary toys or puppets. When Stephen was aged two, his parents attended a Hanen course run by speech and language therapists; in addition to the impact of the programme in terms of putting words and speech in context, Avril had particularly linked in with the modules on books and craft. So, undaunted, she decided to create her own books, and sought advice from Stephens current speech and language therapist, Jeanne Dippenaar. Jeanne suggested each book should be kept simple with no more than 10-12 simple pictures or we will lose his interest and concentration. The language was to be just as Avril would say it in the real situation. Another of Stephens strengths is his ability to pick up on rhythm and rhyme. Using short, easy-to-repeat sentences meant that he would be able to tell the stories himself after hearing the stories a couple of times. Stephens favoured Spot books (Eric Hill for Frederick Warne) provided further inspiration for a clear, uncluttered feel.
Role play
The Websters kitchen table became the creative hub. Avril used a digital camera and took pictures at local facilities to show the sequence of events. The internet yielded extra pictures where needed, as did the Writing with Symbols software already used for Stephens scheduling board. Avrils husband Robert was vital in the creation of the books, not only with his support for Avril, but also his excellent computer skills. Every single day in the week running up to a visit Avril prepares Stephen with a
book, and takes it as a support tool to remind him, if necessary, while he is in the situation. She also uses the books to introduce role play, for example borrowing a cape from the local hairdresser, turning on the hairdryer and brushing his hair. This gives Avril hope that Stephen will move along the developmental level of imaginative play and she tentatively voices the question, I wonder, I just wonder, if one day he will manage to go to the hairdresser on his own Jeanne, the speech and language therapist providing a service to Stephens school, said the books would in fact be helpful for all the children there. Avril discussed it with a fellow mother whose daughter Christia also attends the school. By chance, a close family friend who is an artist was very interested in the project. David Ryley tackled the swimming book first. It was well received at the school and the feedback from teachers was very helpful in knowing where things could be made clearer. Another vital source of advice was the mothers support group where personal stories helped Avril decide what elements to include. Davids illustrations of the main characters are based around Stephen and Christia. There is a multi-ethnic feel in line with Irish society, and there is also a young person in a wheelchair. A clock is used in pictures where the concept of waiting or finishing is involved and attention is given to the childs perspective of an event as a small person looking at big lights, objects or people (figure 1). Symbols are only used when a child can tell from the outside of a building what it is, but readers can add in other symbols themselves if they wish. The idea was taken to The London Book Fair where Speechmark Publishings Managing Director, Sarah Miles, saw the therapeutic potential of the series and, as Avril says, the rest is history! While the books are suitable for any child, and may be useful linguistically and culturally for children learning English as a second language, Avril has found it a rewarding project because, My special passion is for children with intellectual disability and autism, to help them cooperate. I want to share this with the other mums and dads. The series title Off We Go! underlines the idea of getting out to places in the community and the first group of the dentist, the supermarket, the doctor, swimming, the restaurant and the hairdresser will be followed up by going on an aeroplane, the optician, the cinema, buying new clothes, getting new shoes and going to a birthday party. Avrils respect for and partnership with speech and language therapy teaches us much about encouraging and empowering parents. She recognises that speech and language therapy has a very wide input and communication is not just about words. Although she feels there is not enough speech and language therapy available due to the size of caseloads, she admires Jeanne for her group work and as a great facilitator, particularly through bringing mothers together for training sessions followed by a cup of coffee. As Avril says, such sessions work on many levels, and its during coffee that mums hear ideas from their peers about how to get good, fun, visual programmes into the home. She also believes that, to have an impact, the speech and language therapist cant be detached but has to be involved, moving from being a therapist to becoming a friend of the family. Jeanne agrees that speech and language therapy isnt only about enhancing communication for our clients; sometimes it is also about being a sounding board for a parent with a new idea, or a willing ear, or even a shoulder to cry on always remembering that improved communication is still the ultimate goal. Reflecting on Avrils
Speechmark Publishing is offering Speech & Language Therapy in Practice readers the chance to win one of THREE full sets of Off We Go! books. Each set comprises: Going to the Doctor Going to the Dentist Going to the Supermarket Going to the Restaurant Going to the Hairdresser Going Swimming To enter this FREE prize draw, e-mail your name and address by 25th October to info@speechmark.net with SLTiP Off We Go! offer in the subject line. The lucky winners will be notified by 1st November 2007. The Off We Go! books cost 6.99 each and can be ordered from Speechmark Publishing on 01280 845571. Alternatively, readers can purchase the whole series at the discounted price of 37.75 (10% off ), order code 002-5403.
Reader offer
story, and with 20 years work experience, Jeanne found herself thinking about how universities can teach speech and language therapy students theory, how to do assessments and how to implement specific programmes. When on placement, students experience these elements in practice, dealing with two or three clients at a time. By the time we have completed our training we have learnt the difference between sympathy and empathy, and are aware of rules and procedures that should be followed. While this is all very necessary to starting a new life as a speech and language therapist, Jeanne recognises that this is only the beginning. She says, What cant be taught is how to cope with a huge caseload, how to get staff involved in successfully running programmes and how to encourage parents of disabled children to focus on the ability rather than on the dis of disability. Experience teaches this part. Jeanne is delighted that a casual remark of encouragement to a parent wanting help with writing social stories to assist her intellectually disabled child with transition and new experiences has led to an amazing series of books. She adds, The books will benefit all children and their parents, whether it be at evening story time, improving their reading skills or - as they were initially intended helping them cope with new and sometimes rather traumatic experiences. And, although Avrils motivation in creating the books was to help her own family and other children, since her first meeting with artist David Ryley in March 2006 she admits that the books have taken on a life of their own. Over the past year she has often said, Im too busy, I do not need these books! adding that a project like this is always bigger
than you expect, and a bit like having another baby. But it has ultimately been worth it because you are reaching out and nothing beats the old-fashioned tool of a book, that special, intangible thing that happens when you are reading together on a couch or at bedtime. Avril Webster would like to hear any feedback on the series and can be contacted via Speechmark Publishing, 8 Oxford Court, St James Road, Brackley, NN13 7XY, e-mail info@ speechmark.net.
Reference
Andreae, G. & Wojtowycz, D. (1996) Rumble in the Jungle. London: Orchard Books. Webster, A. (2007) Off We Go! series. Brackley: Speechmark Publishing Ltd.
Resources
Hanen courses, www.hanen.org Off We Go! books, www.speechmark.net Writing with Symbols 2000, www.widgit.com
SLTP
WWW.SPEECHMAG.COM
Virtual developments
Would you like to browse back issues of Speech & Language Therapy in Practice online? Are you interested in discussing books of relevance to speech and language therapists? Might networking with your fellow readers prove useful? Editor Avril Nicoll explains how the newly overhauled speechmag website could benefit you.
he speechmag.com website has had its second complete overhaul since Speech & Language Therapy in Practice established its presence on the internet in 1998. While the main site remains freely available to all, the newly introduced members area is exclusive to subscribers. As well as a social networking facility featuring a virtual book group, the most exciting development for readers is that the members area provides access to pdfs of a number of back issues from 2000 - thus hugely boosting the value of your subscription. (Subscribers are free to print copies of selected articles but must not save, forward or modify these files in any way.) Tried and tested popular elements of the main site include a selection of reprinted articles, guidelines for contributors and useful links. Updated features are a searchable index of abstracts, a shopping cart (secured by Protx) and a blog-style news section. I would like to hear from readers who have items to share via the original articles section of the website. Specialist speech and language therapist Fiona Simpson contacted me recently to say she had pulled together the Mount Wilga High Level Language Test. Although popular, it has never been published, but is now available via the speechmag site. This originals section can also be used for articles with a multimedia element - such as video or audio clips - which dont work so well in print. Please also let me know about thought-provoking material you have come across on the internet. Reader Gillian Bolton for example told me about a talk by an educationalist featured on the TED (Technology, Education, Design) website, which you can see via a link from the speechmag News page. In planning the new site, I was inspired by developments in the publishing world. Contributors to In Circulation magazine and Publishing Expo acknowledge the variety of ways people can now meet their need for information and entertainment, and contend that for a magazine to survive it needs to: 1. Have a niche market with a community feel 2. Offer something no-one else is offering 3. Operate as a multimedia, cross-platform brand 4. Adopt a Web 2.0 philosophy. Speech & Language Therapy in Practice ticks the first two boxes fairly easily as subscribers and contributors are largely from the speech and language therapy profession. Interestingly, people often phone up to renew my membership, which suggests readers feel part of a community. Feedback is also to the point: "I just want to say a quick thank you for the excellent SLT in Practice - when I'm feeling down about all the many constraints put upon us as a profession, the articles about the
inspiring and 'lateral' practical ideas that people are doing out there in the real world really do give me a boost." "I greatly value Speech and Language Therapy in Practice as a publication. I am particularly encouraged that there is a realistic and relatively non-emotive balance between what happens and what we would like. Also that there is a good recognition of all parts of the profession, NHS stakeholder organisations and the independent sector. I really believe that as a profession the future is in recognising differences and in keeping core standards and beliefs for the profession. It is really encouraging to see that reflected in print." The new website also puts the magazine in a much better position to bring its unique brand to a wider audience, as we can now include different types of file such as video and audio. Web 2.0 is a concept or attitude that embraces usergenerated content and social networking. Well-known examples are Amazon book reviews and the software used by ebay to bring people who want to sell together with those who want to buy. In sites like Bebo, MySpace and Facebook, people put together their own profile with a photo and a description of their interests. They use the web space provided to keep in touch with friends and to meet new friends who share similar interests. You Tube enables video clips to be shared. Media organisations such as the BBC and the Guardian have invested heavily in Web 2.0 technology so that people on the receiving end of news are encouraged to make the news by sending in mobile phone pictures of events or commenting on a news story. Wikipedia is already my sons first point of call when he wants to know something (although I have told him about David Crystals warning - http://david-crystal. blogspot.com search it for Wikipedia) and again the concept is that people collectively contribute to a body of work and we all share in the result. While websites represent a significant investment, they also provide an opportunity for a business to express what makes it different. Other organisations offer an online diary for recording continuing professional development, a database to help potential clients find an independent therapist and facilities to customise journal alerts. The Speech & Language Therapy in Practice members area gives you the opportunity to: Write your own profile and upload a photograph Access occasional extra information from authors Talk about books that present the human face of communication disorder / the impression given by the profession (eg. Black Swan Green, Daniel Isnt Talking) Share a poem or story representing communication disability
Discuss the latest issues of the magazine Upload a song, video clip or photograph that could be helpful in therapy or training Access a calendar of events and send notices of events to the editor. One of the central tenets of Web 2.0 is that you are always testing. I am therefore looking on this venture as an experiment a bit of fun even - and am always thinking ahead. The software we are using has not yet proved itself; if it turns out to be too limited or too unstable, well, other options are continually emerging. Your feedback and ideas will play a huge part in deciding where we go from here, so please do get in touch either directly or through the contact form on the website. Please: 1. Sign up for RSS feeds at www.speechmag.com/News so you will be alerted to updates. (RSS stands for Really Simple Syndication and the latest version of Outlook has this as standard. Unlike newsletters which suffer hugely from being treated as spam, RSS comes straight to your reader or e-mail in-box.) 2. Log in to the members area. I have e-mailed or mailed all subscribers with their user name and password. If for any reason you havent received yours, let me know. 3. Sign up to the social networking site. For your security you do this with a new user name and password of your choice. (This area can only be accessed via the main site and is not spidered by search engines.) 4. RETURN to the site regularly to see who has joined up, and if anyone has sent you a friend request or a message. 5. Send me any suggestions however off the wall for how you would like to see the Speech & Language Therapy in Practice community develop.
References Leimbach, M. (2006) Daniel Isnt Talking. London: Harper Perennial. Mitchell, D. (2006) Black Swan Green. London: Hodder & Stoughton. Web references www.amazon.co.ukwww.bbc.co.uk/news...www.bebo. comwww.ebay.co.ukwww.facebook.comwww. guardian.co.ukwww.incirculation.co.ukwww.myspace. comwww.publishingexpo.co.ukwww.wikipedia.org www.youtube.com Acknowledgements Thanks to Fiona Reid for the design / colour concept, Gary Ennis at NS Design for his can do attitude and the subscribSLTP ers who helped test the social networking site.
SERVICE REDESIGN
A. THE SERVICE
Middlesbrough Primary Care Trust provides speech and language therapy services for children in the Middlesbrough and Redcar Cleveland areas in the North East of England. (The speech and language therapy service for adult neurological / acquired disorders is provided by South Tees Acute Trust.) The population is in the region of 300,000 and there are 4,000 new births each year. The locality has nine Sure Start projects that are developing into fourteen Childrens Centres, and four wards fall into the top ten most deprived in the UK (www.statistics.gov.uk). Much of the population resides in urban areas, but there is a proportion of rural and farming communities. The service had a paediatric department (catering for mainstream clinical work as well as language units / resource bases and assessment classes / support bases in mainstream schools), a Sure Start department covering all nine projects, and a special needs department (including children with learning disability, physical disability, hearing impairment and autistic spectrum disorders). There are 22.4 whole-time equivalent (wte) speech and language therapists and 12.5 wte speech and language therapy assistants supported by 4.2 wte administrative staff. Children aged 0 to 4 years living within Sure Start areas received therapy in homes, Sure Start Centres and local nurseries. All other mainstream children received therapy at one of three community clinics sited across the patch; so children from around 100 schools in an area spanning 50 by 10 miles were travelling for anything up to an hour each way to attend therapy. Needless to say, non-attendance was an issue. Children with
special needs attend specialist pre-school and educational provision, where therapy is provided. A number of factors led us to consider a full restructuring of the service, including: 1. The National Service Framework for children, young people and maternity services (DH, 2004) and Every Child Matters (www.everychildmatters.gov.uk) 2. The Primary Care Trust move to locality working for Public Health teams 3. Evidence from the KITE randomised controlled trial (Broomfield, 2005) 4. Concern about ongoing non-attendance at community clinic appointments 5. Concern about time lost from schooling when children did attend 6. Feedback from parents indicating they wished to have more accessible services 7. Feedback from education professionals having experienced better joint working and improved liaison from Sure Start speech and language therapy teams 8. Transition from Sure Start to Childrens Centres 9. Feedback from our own staff about the benefits of working within Sure Start teams and within localities.
B. THE PROCESS
A planning week was set aside in October 2004, where all senior speech and language therapy staff met to conduct a SWOT (Strengths, Weaknesses, Opportunities, Threats) analysis on current provision, determine what our ideal service provision would be, and identify an implementation plan. All staff in the service were involved on the first day, identifying their wishes and concerns as well as ideas and expectations, to inform the process. We
Photos show zone teams as they head off on a team-building treasure hunt. Below left to right: East zone, Central zone, South zone, East Cleveland zone, North zone, Eston zone,Redcar zone.
SERVICE REDESIGN
had no external facilitator, identifying that two key members of the management team were better placed to take on this role. A crucial element was that each day ended with the setting of the agenda for the following day. The timetable for the week was: Monday am All staff involved: Presentation by representatives from the two Local Authorities on Childrens Centres Presentation from speech and language therapy management team about aims and objectives for the week Brainstorming session for all staff to identify their wishes and concerns, ideas and expectations Senior staff: Current facts and figures about the population and caseloads Collation of evidence and policies Decision to move to locality working Blue sky thinking what would the service look like if we were starting from scratch without any resource or policy restrictions Determining the key elements of the service delivery model Adding detail to the model who would do what to whom Identifying the action plan Timescale for implementation Plan for consultation with key stakeholders Primary Care Trust, Local Authorities including Education, parents, Sure Start managers Preparation of a presentation for all staff Full staff meeting to reveal the proposed model
1. Children (figure 2) The base level addressed all children regardless of any communication need, the middle level addressed all children with communication delay, and the top level addressed all communication disordered children. 2. Service (figure 3) The base level addressed the nature of the locality teams, the middle level addressed management of children with communication delay, and the top level addressed specialist speech and language therapists within the service. 3. Delivery (figure 4) The base level addressed health promotion and prevention work, the middle level addressed assessment, training and consultation, and the top level addressed specific speech and language therapy intervention. 4. Location (figure 5) The base level incorporated working within the childs locality, the middle level incorporated structured settings accessed by the child, and the top level addressed specific speech and language therapy locations.
Children
Service
Delivery
Location
Figure 2 Children
Monday pm
Specialist team
Input from core team, MDT and parents
Others
Responsibility with SLTA, nursery, school Input from SLT, specialist team as required
Tuesday
Core Team
D. IMPLEMENTATION
Between October 2004 and September 2005, we integrated our Sure Start and mainstream paediatric speech and language therapy staff and reorganised into seven locality teams which matched the developing Public Health teams and the Local Authority Education clusters. Each Core Speech and Language Therapy Team consists of a team lead (a senior / specialist therapist), together with generalist speech and language therapists, speech and language therapy assistants and administration and clerical sessions. In addition, each specialist therapist is attached to a core team, and each team has allocated time and support from a designated member of the speech and language therapy management team. Each team has been relocated to a base within their locality and has responsibility for the whole child population therein. Each core team is responsible for a. Caseload management assessment and intervention in homes, nurseries and schools within their locality b. Training and liaison with education colleagues c. Screening, including conducting Sure Start Language Measures d. Health promotion activities, linked with health visitors and Childrens Centres e. Gathering feedback and evaluating their practice f. Onward referral and identification of children requiring specialist input g. Implementing care plans according to departmental care pathways
Figure 4 Delivery
Specific
Input specific to disorder From specialist team Assessments, training, diagnostic therapy Support offered to core team
Focused
Input focused on communication Input and monitoring by others SLTA doing specialist intervention Training by SLT service Assessment by core team SLT Core team SLT involved with at risk families
Holistic
2 Year screening by core team SLT Health promotion Prevention Training Environmental enrichment
Tuesday
Figure 5 Location
C. THE MODEL
There were four major elements of the new service delivery model (figure 1): 1. the caseload, including the Health Promotion aspect of Sure Start Children 2. the staffing Service 3. what we were going to do Delivery, 4. where we were going to do it Location. Each element, based on thetriangle of need, formed a side of a four-sided pyramid, and each element had three tiers.
Everywhere
All locations that the child and family may access
SERVICE REDESIGN
h. Ensuring equity of speech and language therapy provision across the whole patch, whilst meeting local need. We have a number of specialist therapists, covering specific language impairment, specific speech disorder, dysfluency, ENT and cleft lip and palate, autism spectrum disorder, learning disability, physical disability and AAC, hearing impairment and dysphagia. Each specialist is responsible for: i. Specialist diagnostic assessment and intervention ii. Providing advice and support to all core teams iii. Operating surgery time for core teams, including conducting visits and directing therapy iv. Reviewing and developing specific care pathways v. Providing training to colleagues both within and outwith the service vi. Conducting evaluation and appraisal of best current evidence base vii. Working together with the management team to continuously evaluate and develop the service. The speech and language therapy management team is responsible for the operational management and straFigure 6 In practice
tegic direction of the service. It comprises five Clinical Co-ordinators, a Consultant speech and language therapist and a Professional Lead. Each person has a clinical specialism and acts in a specialist capacity. In addition, the Clinical Co-ordinators have specific management responsibilities representing the whole service, such as child protection, clinical supervision and audit. The Consultant has responsibility for research and development and facilitating evidence based practice. The Professional Lead has responsibility for staff and financial management. The two case examples in figure 6 show how the model is working in practice.
E. OUTCOMES
We have recently consulted a range of parents to obtain feedback about our reconfigured service. All responses were extremely positive; in particular, they liked Children being seen in schools and nurseries, as they know the setting and they dont need to travel Less time being lost from the curriculum The same small team stays involved throughout The service is flexible to meet the needs of families and children They see speech and language therapists and teaching staff talking to each other They still have the opportunity to attend their childs appointments They get termly (at least) updates by phone or post about their childs progress; they also still get homework packs to practise They like seeing speech and language therapists at Childrens Centre activities, so they can chat informally about concerns without having to have been properly referred. We are in the process of conducting a formal evaluation with our education and health colleagues. However, comments about the following issues have been made informally to us from both inside and outside the service: Better access to speech and language therapists by teaching staff - and of teachers by speech and language therapy staff - to get advice, ask questions, and discuss kids were worried about Fewer inappropriate referrals Better attendance at appointments, so therapy is more effective The service is far more flexible and responsive to client and school need Children hardly miss any class time now Cycle of discharge and re-referral has all but ceased children are maintained on the active caseload throughout their pre-school years (at least) Referrals now made of harder to reach families who wouldnt have attended central clinic but do (usually) attend school Increased contact with health visitors, maternity staff and Childrens Centre teams has increased referrals of very young children, often with complex needs. This has led to earlier access to the child development centre, earlier multidisciplinary team assessment, earlier diagnosis and appropriate support in place when the child starts school. Sure Start health promotion activities are being rolled out across the patch Multidisciplinary / multi-agency working is becoming a reality. In terms of facts and figures, referrals have doubled in the space of a year from 289 in Jan-June 2005 to 540 in Jan-June 2006, with fewer inappropriate referrals being received. The total active caseload is 2843. The active caseload in each zone is between 226 and 312, and the active caseload managed by specialists is between 25 and 169. Non-attendance has dropped from 780 in the year 02-03 to 360 in 05-06. Feedback from referrers is that they are now more aware of who we are, where we are and what we do and therefore they are more likely to refer. They are also more confident that the child will access the service as we are based in schools and the community. The implications of this for the service are that some of the preventative Sure Start activi-
Connor was seen at home by a speech and language therapy assistant for a Sure Start Language Measure at 2 years old. At that time he had an expressive vocabulary of 30 single words and the assistant encouraged his mum to attend the Sure Start Parent and Toddler Group. The assistant visits the group each month. When on the next visit mum expressed concerns about Connors feeding, the assistant supported mum in making a formal referral to the speech and language therapy service. Connor was assessed at 30 months by the core team speech and language therapist who felt that he would benefit from assessment by the dysphagia specialist. The dysphagia specialist therapist offered a joint assessment appointment with the core team therapist at the Parent and Toddler Group. Guidance for management of the difficulty was given to both mum and the core team. During the next three months, the core team therapist became increasingly concerned about Connors developmental milestones and referred him to the specialist pre-school assessment provision. Multidisciplinary assessment identified moderate global delay with specific communication difficulties. He was given a place in the local Childrens Centre nursery where his difficulties could be addressed. The core team will continue to support the nursery and mum to maximise his communication potential.
Sarah was referred for speech and language therapy assessment by her nursery teacher. She was assessed at 3 years 9 months in nursery by the core team therapist who identified significant speech difficulties. Sarah was then placed in an early speech skills group with her peers, run by the speech and language therapy assistant in her nursery. After half a term, at 4 years, Sarah was still very difficult to understand and all involved were expressing concern. The specialist therapist was consulted and it was agreed that Sarah should receive a period of diagnostic assessment. She was grouped with three similar children from the locality and the intervention was delivered in a local Childrens Centre location by the specialist therapist supported by a speech and language therapy assistant from the zone. Sarah was identified as presenting with inconsistent deviant phonological disorder. A period of intervention following the Core Vocabulary approach (Dodd et al., 2006) then occurred; this was run weekly in nursery by the specialist therapist, with both the zone therapist (for the purposes of training) and a zone assistant present. The zone assistant then conducted a second weekly practice session at home in order to keep mum involved. After a term of input, Sarah had made good progress and was recently jointly re-assessed by the zone and specialist therapists. Her next period of intervention focusing on specific sound targets has been planned jointly and is being implemented by the speech and language therapy assistant; weekly support is available from the zone therapist and monthly update discussions with the specialist are planned.
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ties have reduced to increase time for direct intervention. We have also become smarter about putting children on review. Because we are more accessible and have provided training into schools, education colleagues are more comfortable with monitoring the children and rereferring and we provide them with clear guidelines as to what to look for and when to re-refer. This helps to keep the numbers manageable.
Recommended Reading
Given the overwhelming amount of information available, we need to be selective in what we read. Even then we find that papers do not always include an explicit link between the theory / experiment and its direct or indirect implications for practice. Articles in journals have gone through a painstaking process of peer review but it is ultimately for you, the reader, to judge whether the stated result is a) valid and b) clinically important in other words, why and how the article will change your practice. In this occasional section, readers explain why they would recommend a particular article from a peer reviewed journal to their colleagues. While this is a personal response that focuses on clinical importance and practicalities, the author may also wish to comment on factors such as study design / validity and statistics / statistical significance. VOICE / CHRONIC COUGH Vertigan, A.E., Theodoros, D.G., Gibson, P.G. & Winkworth, A.L. (2006) Efficacy of speech pathology management for chronic cough: a randomised placebo controlled trial of treatment efficacy, Thorax, December 61, pp. 1065 - 1069. [Available via www.thorax.bmj.com.] Jane Armstrong says: This article about treatment efficacy for chronic cough was emailed to me by my referring ENT Consultant. In our current climate of everything being evidence based it is nice to see an article which shouts the virtues of speech and language therapy in the area of voice and cough management. For those of us who work with voice and / or cough, this article is a welcome sight. There are four components to Vertigan et al.s treatment method for chronic cough: 1. Education 2. Strategies to reduce cough 3. Reduce laryngeal irritation / improve vocal hygiene 4. Psycho-educational counselling
F. NEXT STEPS
The formal evaluation is just beginning this will be an ongoing process and will influence future modifications to the service. However, we have a few outstanding matters to be addressed: 1. We need to consider the issue of ensuring parents are fully engaged when children are seen in school 2. At present, much of the restructure has focused on the mainstream element of the service, although the special needs specialists have been involved through surgery time and the inclusion agenda. However, a full review of the special needs speech and language therapy service is planned during 2007 3. The broader issue of mainstreaming the Sure Start budget and securing funding for the service developments we have identified as a result of being more accessible is on the agenda, but we hope that our integrated model will have put us on a sounder footing. Our stakeholders have been extremely supportive of the reorganisation to date which can only be to the good. We are hugely grateful to the Primary Care Trust boards and the Local Education Authority officers for their support and enthusiasm, and for sharing the vision with us. We are grateful to all the parents who contributed to our thinking through various feedback mechanisms before, during and after the reorganisation. And we are indebted to every single member of staff, whether therapist, assistant or administrative officer, for the initial drive and the ongoing commitment to building pyramids on Planet Zog! Nikki Joyce is Professional Lead and Jan Broomfield is Consultant Speech and Language Therapist for the Childrens Speech and Language Therapy Service of Middlesbrough Primary Care Trust. For further information please contact them at jan.broomfield@nhs.net
References
Broomfield, J. (2005) The case for flying KITEs, Speech & Language Therapy in Practice Winter, pp. 14-17. Great Britain. Department of Health, Department for Education and Skills (2004) National Service Framework for children, young people and maternity services. London: The Stationery Office. [Online at www.dh.gov.uk] Dodd, B., Holm, A., Crosbie, S. & McIntosh, B. (2006) A core vocabulary approach for management of inconsistent speech disorder, Advances in Speech-Language Pathology 8(3), pp. 220-230. SLTP *Planet Zog is a place or situation far removed from what is curREFLECTIONS rently happening, and a general name for any sci-fi planet.
DO WE THINK AHEAD SO WE CAN FORGE OUR OWN PATH OR DO WE WAIT FOR OTHERS TO DECIDE IT FOR US? DO WE GIVE SERVICE REDESIGN THE PLANNING TIME AND ATTENTION TO DETAIL THAT IT NEEDS? DO WE LISTEN TO WHAT CLIENTS, STAFF AND THE WIDER TEAM SAY WORKS BEST?
The placebo group got a course on healthy lifestyle education which included relaxation, stress management, exercise and diet. Both groups attended four intervention sessions with a qualified speech and language therapist. 1. Education Ideas: No physiological benefit from cough Capacity for voluntary cough control Futility of repeated coughing Negative side effects of repeated coughing Benefits of cough suppression 2. Cough suppression Ideas: Anticipate when a cough was about to occur Pattern and degree of warning before the cough Implement a strategy to suppress or replace the cough 3. Vocal Hygiene Ideas: Reduce laryngeal irritation Maximise hydration in order to reduce stimulation of cough receptors Relaxed breathing exercises provided for those with inspiratory dyspnoea 4. Psycho-educational Ideas: Address some differences between behavioural and medical treatment Aim to facilitate acceptance of a behavioural approach Facilitate internalisation of control over their cough View the cough as something individuals do in response to irritating stimuli rather than a phenomenon outside of their control. This approach is designed to reduce the load on the larynx by improving the efficiency of voicing and promoting adequate breath support and oral resonance. Lots of home practice was encouraged. The results show a significant improvement in those people who were receiving the treatment rather than the placebo. And to quote from the article, in conclusion, clinical judgement and symptom ratings support the hypothesis that speech pathology treatment is an effective behavioural intervention for chronic cough which could be considered a valid alternative for individuals whose cough persists despite medical intervention. Jane Armstrong is an independent speech and language therapist in Edinburgh.
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Assessments assessed
We continue our series of in-depth reviews to help you decide if an assessment or programme would meet your needs.
Phoneme Factory
Alison Taylor and Karen Shuttleworth are surprised but pleased to find that this computerised screening programme for use by other professionals can appropriately identify children for speech and language therapy referral.
Phoneme Factory Phonology Screener Yvonne Wren, Tony Hughes & Sue Roulstone nferNelson From 85
honology Screener is designed to identify phonological difficulties in children aged 4-7 years and to help other professionals when considering referral to speech and language therapy. Authors outline that the pack can be used by teaching staff, psychologists and indeed anyone who has completed the training element incorporated within the screener. The pack contains a CD Rom and an accessible manual to guide administrators through its use. It contains five parts: administration; phoneme ready reckoner; teacher training; child assessment and results. It is intended to help distinguish those children with a phonological impairment from those who demonstrate phonological development which is within the normal range for their age. The screener aims to recommend which children should be referred to speech and language therapy, and gives a broad outline of the types of error patterns present. We felt it appropriate for teaching colleagues to evaluate the pack with us and we were fortunate that they were able to carry out a number of assessments within the school setting. Generally school staff were impressed with the screener but found some elements of the training section complex for example, listening to middle word sounds. This section requires listening and watching examples of responses and methods or recording which will then be used during the assessment. For speech and language therapists we felt this was an adequate tool but to the untrained ear there is the opportunity to repeat this section as often as required to gain skills and build confidence. The assessment and training section develops from listening to single sounds at the beginning, middle and end of words through to clusters and multi-syllable structures. In the assessment section we felt that some of the instructions may need to be reinforced by the administrator, especially for those children struggling with receptive language or concentration (as we found in our clinic trials of the product). It is always more complex when trying to communicate via a computer, as it is difficult to focus on facial expression and non-verbal strategies when facing the screen. Teachers also commented that it was useful to have two adults to administer the assessment, one to input the data / responses and one to keep the child on task and to listen for any errors. Sixty six items are presented to the child using clear, colourful pictures - some of which are animated - and a clear voice offers instructions, prompts and even enthusiastic praise for completion! One practical difficulty we found was the inability to return to previous items if a child was not cooperating and then produced the target word at a later stage. The concentration of most children was sufficient to sustain the sixty six items, although these are grouped and short breaks can be built in to sessions if necessary. The inability to control the mouse caused frustration for some children who have been encouraged to have a hands on approach with computers. Similarly, some of the vocabulary targets such as ice block rather than lolly caused some confusion to our children. However, we felt that both of these problems were surmountable and did not, for us, detract from the overall usefulness of the package. The screener report is computer compiled on completion of the assessment. It is comprehensive, accurate and gives clear guidelines of a care pathway. The printable report includes a clear coloured table of error patterns as well as analysing sounds / words. We felt speech and language therapists would welcome the report attached to an incoming referral to guide initial assessment. In a final section the screener recommends whether speech and language therapy referral is necessary. Our huge scepticism at this section was proved totally unfounded as all the children we felt should be referred were identified. Minimal immaturity was identified by the screener but speech and language therapy intervention was not recommended at this stage, again wholly appropriate for some of our test cases. The pack gives an opportunity to print out a personalised well done certificate. We would recommend this screener and envisage that it will be a useful tool for education staff when deciding whether to refer to speech and language therapy. With an ongoing requirement for yearly product licence renewal (59+vat), plus initial purchase cost, the schools we worked with felt this was a realistic outlay and comparable with other computer packages. Alison Taylor and Karen Shuttleworth are speech and language therapists with Cumbria PCT.
CARS
Debbie Hoban takes the CARS for a test drive and discovers a clinically useful screening tool for autism that is well worth the money. The Childhood Autism Rating Scale (CARS) Schopler, E., Reichler, R. J. & Rochen Renner, B. (2002) Age Range 2-11 years Western Psychological Services (Available from nferNelson) 60.00 + VAT
work as part of a small autism spectrum disorders team, where we are involved in a larger multidisciplinary diagnostic team for social communication disorders, including autism. As part of my role in this process I use a range of formal and informal assessment, with observations playing an integral part. Observations are extremely useful in providing information on a young person, in an environment they are familiar with, and as part of their everyday routine. I get a better idea and a more realistic example of a young persons typical language skills and behaviour because they are functioning in a context that is natural to them. I was interested to see how a more structured format would benefit my observations, and if the checklist of behaviours would help me acquire additional information and detail. Also, if scores gained from the rating scales would prove useful in providing an indication that an individual may have autism and possibly lead to further investigation. The Childhood Autism Rating Scale (CARS) is described as a 15 item behavioural rating scale developed to identify children with Autism. It has been in use since the early 1970s to enable clinicians to obtain a more objective diagnosis of Autism in a more readily useable form. The CARS ratings can be made from observations, parental reports and history records. As long as these sources include the information required for rating all of the 15 scales, the CARS can be used. However, the manual does state it is important to keep in mind that the CARS does not produce a total diagnosis and that other factors - such as individual behaviours and medical symptoms - should also be taken into account and evaluated by additional instruments and procedures. The manual is easy to read and informative on the development of CARS and how to use its ratings alongside observation of the young person. The 15 item behavioural rating scales incorporate Kanners (1943) primary autism features and other characteristics noted by Creak that are found in many but not all children who may be considered autistic. Additionally, the rest of the scales are useful in tapping in to the symptoms characteristic of the younger child.
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The 15 items are: relating to people; imitation; emotional response; body use; adaption to change; visual response; listening response; taste; smell and touch response and use; fear and nervousness; verbal communication; non verbal communication; activity level; level and consistency of intellectual response; and general impressions. Each is given a rationale for inclusion and described in the manual, followed by a description of the behaviour to be observed and also the conditions to which the child may be responding. These considerations are followed by 1-4 ratings and illustrations / examples of corresponding behaviour. A rating of 1 indicates behaviour within normal limits and a rating of 4 indicates that the childs behaviour is severely abnormal. There are midpoints for when the behaviour appears to fall between two categories. Having these descriptions is really useful as it gives the observer a basis to make their scores on. The descriptions are also conveniently printed on the CARS rating sheet which helps with easy and quick scoring. I was able to use the assessment three times. All three young people were referred to me to assess because of general queries of possible autism spectrum disorder. I used the rating scales by doing a general observation, writing notes on everything that I heard and saw, and making additional notes on behaviour and communication relevant to the ratings on the worksheet provided. After the observation I went through my own notes and the worksheet notes to assist me in making the actual CARS ratings. Its important to read all of the behaviour descriptions for each item before rating the behaviour. None of the three took me longer than 20 minutes to complete. The CARS is extremely beneficial in that the ratings can be done over a length of time and can be based on not just observation or time spent in a clinical setting but different sources such as history records, parent reports and classroom participation. The ratings are not necessarily indicative of the moment that an observation is done. This is important when working with children with autism spectrum disorders as autism is a continuum and their behaviours and reactions can vary each day according to the situation and environment. I believe that the CARS can be a useful screening tool for speech and language therapists who work within assessment and diagnostic teams for autism spectrum disorder. As the CARS is participant-friendly, non-invasive
and highlights key areas for the assessor to focus on, it is extremely useful as a basis for an observation. It also gives an answer at the end as to whether the young persons behaviour indicates the possibility of being non-autistic, mildly / moderately autistic or severely autistic. This is especially useful for early intervention. The information can also be used to highlight areas such as pragmatics - for further and more specific assessment. Overall, the CARS is a clinically useful screening tool. It can inform the diagnostic process and the multidisciplinary team and determine those who require further assessment for a possible diagnosis of autism spectrum disorder. It is well worth the money. Debbie Hoban is speech and language therapist for children with autism spectrum disorders, Herefordshire Primary Care Trust (PCT) and Coddington Court School Autism West Midlands.
nitive issues with potential for impact on communication. This provides some initial information upon which other judgements and possibly referrals to other agencies may be considered. Of particular note are subtests such as line bisection (allowing us to see any right / left bias or neglect) and gesture object use (during which potential for this as a method of alternative and augmentative communication may be considered). Other subtests include a limited number of examples of each task, but act as a useful screening tool upon which further assessment can be based. The Disability Questionnaire is in two parts. The first concerns disability, and asks the person with aphasia to rate the degree of difficulty they feel they experience with spoken expression, auditory comprehension, reading and writing. The second part concerns the impact of the perceived disability. This is broken down into three sub-sections: Intrusion, Self-image and Emotional consequences. The Disability section is clear and easy to follow, and the graded contexts for each modality provide a useful measure of perceived functional ability. The Impact section is more abstract and thus potentially more difficult for people with aphasia to follow. For example, in the Intrusion section, some of our clients found it difficult to separate the degree of difficulty in a modality (as in the Disability section) from rating how much it impacts on their life. It has also been our experience that carrying out the questionnaire with people who have severe aphasia and / or who are experiencing psychological difficulties in coming to terms with their situation may actually appear to reinforce their negative beliefs, as they may rate themselves at the lowest point on every question. On the other hand, carrying out the questionnaire with people with relatively mild aphasia who appeared to have adapted fairly well to their difficulties has been a real eye-opener, often revealing much more negative self-perceptions than those assumed by the therapist. The CAT gives a comprehensive overview of the individuals difficulties. Its simple nature and brevity of administration make it very appealing to the busy therapist. Overall, this test appears to represent good value for money and is certainly a useful resource for those speech and language therapists working in the field. Lorraine Hope, Emma Eaton and Jaclyn Dallas are speech and language therapists for NHS Tayside in Angus.
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GOAL SETTING
Concerned that their speech and language therapy expectations for children with severe cerebral palsy seemed very far apart from those of the parents, Trish Morrison and Susanne King looked for a way to meet in the middle. Their small pilot project using a controversial oral motor approach has implications for goal setting with parents and future research.
READ THIS IF YOU ARE INTERESTED IN DEVELOPING YOUR NEGOTIATION SKILLS WITH CARERS EXPLORING THERAPY WITH CLIENTS AND FAMILIES PERSPECTIVES, PRIORITIES AND OUTCOMES
ave you ever found yourself in a situation where a childs parents wanted the primary focus of intervention to be one area and your professional opinion would prioritise another aspect of communication? Parents and speech and language therapists may be approaching the therapy process from very different perspectives. Parents may have the expectation that the speech and language therapist will be helping their child develop speech and they may have the hope that their child will eventually talk. The speech and language therapist however may be looking at a child whose medical diagnosis, clinical presentation and progress in therapy may indicate that the primary focus of therapy should be augmenting the childs communication. Therapy services are now more client and family centred and espouse that both should be central to the goal setting process. This presents challenges when families and speech and language therapists have different views regarding what these goals should be. In our Early Intervention Service, in a centre for people with physical disabilities, this was particularly evident. Parents were actively looking for a main focus on speech while therapists were offering a total communication approach. Attendance at an oral motor therapy seminar triggered therapists into thinking that perhaps this approach had something to offer this client group. It would address parents wishes and goals to work on speech, and we hypothesised that providing this opportunity to work on parental goals may lead to greater buy in to augmentative communication at a later stage. Furthermore, this approach may have a positive impact on speech and feeding skills.
Effective?
There is a lot written about the controversy of whether oral motor therapy is effective in improving speech or not. Project CHANCE (Child Development and Oral Motor Skills) (internet source unavailable) cited delayed babbling or producing a limited variety of consonants among the reasons to select children for oral motor therapy. Underlying this is the assumption that oral motor work will help develop speech production. Conversely Bowen (2005), although agreeing that oral motor therapies are widely used in North America, quoted research which reviewed six studies and concluded that these overwhelmingly demonstrated that oral motor exercises do not improve speech sound production. It was stated that if clinicians wished to target improved speech production they must work on speech and
not on tasks that only superficially appear to be speech like movements (Lof, 2003 cited by Bowen, 2005, p.3). Clarke (2003, p.400) states there is limited empirical evidence to support what she calls neuromuscular treatments and goes on to suggest that many clinicians do not have the foundational information needed to judge the theoretical soundness of unstudied treatment strategies. These unstudied treatment strategies abound, and there is a plethora of commercially available programmes and manuals that are actively promoted by lecture tours, internet promotions and conference presentations (Bowen, 2005). Parents are very aware of these treatments, both through word of mouth and the internet. The empirical research articles we read did not support the claim that oral motor tasks affect the development of vocalisation or speech, although some supporters of oral motor treatment would argue that not enough research has been done in the area. This left us wondering - if we worked on oral motor activities, would we be giving false hope to parents that their child may develop functional speech? Conversely, if we did not offer the children oral motor therapy, would these parents feel like they had failed or let down their child by not exploring every avenue for speech? Given all of these factors, we undertook a small pilot project to evaluate the impact of this intervention approach with a group of children with severe cerebral palsy. We decided to run an intensive oral motor group along with parental education and training in the area to see what benefits if any - this population would gain. After the group, we gave the parents a programme to follow for a month and then followed up with a two day intensive to review progress, programmes and to get parental feedback. We were keen to see whether a regular, structured oral motor programme would improve the quality of early vocalisations in non-verbal or partially verbal pre-school children with cerebral palsy.
Structure
As identified by Bahr (2001), an oral motor treatment session typically includes four segments and we used this format as a template for our session structure: 1. A gross motor activity To help develop postural tone and stability. We have noted (as did Bahr, 2001, p.139) that vocalisation of ten occurs during movement activities, hence including a gross motor activity at the beginning of the session may enhance vocalisation.
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GOAL SETTING
Figure 1 Session objectives Session 1 Informal baseline assessment of oral motor skills and the quality of the childrens vocalisations was compiled (see figure 2). Assessment focused on the childrens skill level in tasks to be used during intervention and included information provided by the mother. Information given to parents. The speech and language therapists devised an oral motor programme for each child based on the information obtained during their initial assessment. Occupational therapy gross motor activities and hand massage. Speech and language therapists modelled the oral motor programme. Occupational therapy gross motor activities and hand massage. Parents trialled the oral motor programme with supervision from the speech and language therapists followed by problem-solving any difficulties. Parents were asked to do the occupational therapy and oral motor programme 3 times per day prior to an oral task such as brushing teeth / eating. The session began with feedback from parents regarding any difficulties they experienced in following the programme and changes they observed, if any. This was followed by an occupational therapy led gross motor activity and massage. The session ended with a speech and language therapist reviewing the childs programme, making any changes and modelling the new activities. Occupational therapy gross motor activities and hand massage. Parents trialled new programme and problem solved any difficulties. Re-assessment and results compared with baseline.
Figure 2 Baseline assessment ORAL MOTOR PROGRAMME PRE-COURSE SCREENING Date: _______________________ NAME: _______________________
1. Tolerates firm touch on hands (H = hands/fingers T = toothette) -----cheeks------forehead------around lips------lips-----Front teeth------side teeth------inner cheeks------tongue 2. Current level of vocalisation (check list):
Session 3
(A) (B)
3. Respiration: Bubble blowing programme: (level achieved). 4. Phonation level achieved with echo horn. 5. Jaw stability number of bites on arc grabber, red or yellow chewy. Any other comments:
Session 5
SIGNED: _____________________________
2. Oral massage Which prepares the infants mouth for the remainder of the therapy activities in the session (Bahr, 2001, p.121). 3. Specific oral motor activities In this section we focused on developing breath support through the use of Rosenfeld-Johnsons Bubble Blowing Hierarchy and jaw stability which, in this programme (2001), is identified as the necessary foundation for later dissociated movements of the lips, tongue and cheeks. 4. Specific speech and language activities In our programme, we wished to focus on promoting speech, hence we used Rosenfeld-Johnsons Echo Horn programme (2001) to help the children develop voluntary vocalisation, increase their range of vocalisations and practise speech sound imitation. Five children aged between 2 years 4 months and 4 years 6 months with a diagnosis of cerebral palsy attended, accompanied by their mothers. Four of the children had cerebral palsy with Gross Motor Function Classification System (GMFCS) of level IV or V, with one child having a level II (Palisano et al., 1997). The group contained three girls and two boys; four of the children were identified as non-verbal with one child being partially verbal. This group attended for sessions on three consecutive days, followed by two consecutive days four weeks later (figure 1). In the final session we looked at therapy outcomes and compared them to baseline measurements and asked parents for feedback about any changes they had noted in their child.
Controversy continues regarding the efficacy of oral motor therapy and its role in speech development; consequently, we should continue to elaborate our knowledge base through research. We were interested to note that most of the improvements noted on re-assessment and parental feedback were not related to speech. Increased tolerance to touch on the body was noted in two children and increased tolerance to touch intraorally in another two children (figure 3). Bahr (2001) reports that oral massage increases blood supply to the oral facial muscles which can help normalise sensation, increase muscle tone and promote awareness of the oral motor structures. Although not related to speech, this outcome could have implications for oral hygiene (for example, increased tolerance to tooth brushing), feeding (ability to tolerate food textures in the mouth) and social factors (reduced mouth open postures at rest).
Impact on saliva
Increased muscle tone, normalisation of sensation, and an increased awareness of oral motor structures could also have an impact on saliva loss - and decreased saliva loss was reported on parental feedback by four of the five parents (figure 4). While we didnt formally assess this at baseline it merits further investigation and would be an interesting follow-on study. The parents of one child reported that, prior to the therapy programme, she had severe saliva loss to the level of the chest. Bibs were always wet and had to be changed up to 20 times daily. After the therapy programme, this had reduced to mostly moderate saliva loss to the level of the chin, with
Body / face
Intraorally
Pre-therapy Post-therapy
15
GOAL SETTING
Parental feedback
4
Increase in Vocalisations
Number of parents
Jaw Stability
Respiration
Vocalisation
Phonation
Improvement No Change
REFLECTIONS DO I USE PILOT PROJECTS TO UNCOVER ISSUES I WILL NEED TO ADDRESS IN FUTURE VENTURES? DO I TREAT THERAPY AS A JOURNEY, WITH THE OPTION TO TEST OUT ALTERNATIVE ROUTES? DO I EVALUATE OUTCOMES IN A NARROW OR HOLISTIC WAY?
bibs remaining dry for a couple of hours at a time. There was a mixed picture when looking at the results of specific oral motor activities (figure 5). Sara Rosenfeld-Johnson advocates a hierarchical approach to oral motor therapy starting at the childs level of ability and progressing slowly at the childs pace. Our programme only ran for five weeks and the children had severe oral motor difficulties so improvements were slight but there was progress in the hierarchy for four of the children in two of the motor areas. Only one child did not improve in any of the assessed oral motor components. Improvement in jaw stability, assessed by the number of bites achieved on an arc grabber, was only seen in one child, who was the oldest and partially verbal. Three children showed improvements in respiratory function, and three children showed progress in phonation. The research articles mentioned earlier were mostly looking at the efficacy of oral motor therapy on speech development. Our small project was inconclusive as to the benefit to speech. Two of the children improved quantity and quality of vocalisation on reassessment (figure 5) and three of the five parents reported increased vocalisation on feedback (figure 4). However, it is unclear whether this was directly related to the oral motor component of the programme. The gross motor component could have encouraged the increased vocalisation (as reported by Bahr, 2001) or the increased time spent face to face with the child, or indeed the parents may have been more focused on vocalisation than prior to the programme. Improvement in feeding (chewing and keeping food in the mouth) was noted in the parental report of two children (figure 4). This was another element that was not specifically assessed or targeted in the therapy programme. Sara Rosenfeld-Johnson suggests that her oral motor programme targets speech and improving feeding skills and should be used in conjunction with speech and eating, drinking and swallowing therapy. Four of the five parents indicated (figure 4) that trying to do the programme three times per day every day (as recommended by Gangale, 2001) was very difficult to achieve. The child with physical disability requires a lot of time for basic care needs such as washing, dressing and feeding. Add to this physiotherapy programmes (essential for health, movement and handling) and the numerous appointments they have to attend and there is not much time left for oral motor programmes even for the parents who are highly motivated. Some parents adapted the programme so that it fitted in with their daily lives, the consensus being that daily practice was a reasonable expectation when the child was well. This could have skewed the results; for example, only doing the programme once daily or doing different parts of the programme at different times in the day rather than altogether.
look at how oral motor therapy benefits the children in this population. We learned a lot in the process and feel that it is essential that, as clinicians, we record therapeutic outcomes however imperfectly to add to the evidence base. The things we have learned in our small project would lead us to further more empirical research where we would consider: Increasing our sample size and refining our selection criteria Increasing the time frame and including regular followup appointments Using more formalised oral motor assessments Refining and structuring the parental questionnaire Including assessments on feeding and saliva loss at the baseline of therapy outcome stage Exploring programmes that fit with the activities of daily living so that parents can incorporate it into their daily life and do not have to find extra time. Apart from research, the project gave parents the opportunity and skills to work on oral motor work with their children in a way that allowed them to see realistically what the results were and the effort needed to go down this road. Although most of the parents still want to work on speech, they are more willing to allow us to work on speech as part of a total communication approach. Giving the parents a chance to be part of goal making, and to be honest about feedback, gave us a better working relationship with them and their children. Trish Morrison is a Senior Speech and Language Therapist at the Central Remedial Clinic, Dublin, Ireland. Susanne King has now returned to Australia and is working as a Senior Speech and Language Therapist for the Cerebral Palsy League of Queensland.
Acknowledgements
Our thanks to Rachel Glennane, Occupational Therapy Manager and to Senior Occupational Therapists Jean Oswell and Frances Corazza at the Central Remedial Clinic.
References
Bahr, D.C. (2001) Oral Motor Assessment & Treatment (Ages and Stages). Boston:Allyn & Bacon. Bowen, C. (2005) Non-speech Oral Motor Exercises. Updated version available at: http://members.tripod.com/ caroline_bowen/oralmotortherapy.htm (Accessed 25 July 2007). Clarke, M. (2003) Neuromuscular Treatments for Speech and Swallowing: A Tutorial, American Journal of SpeechLanguage Pathology 12, pp. 400-415. Gangale, D.C. (2001) The Source for Oro-Facial Exercise Updated and Expanded. East Moline: LinguiSystems. Palisano, R., Rosenbaum, P., Walter, S., Russell, D., Wood, E. & Galuppi, B. (1997) Gross Motor Function Classification System for Cerebral Palsy, Dev. Med. Child Neurology 39, pp. 214223. Office of Children and Special Health Care Needs (date unknown) Project CHANCE, Child Development and Oral Motor Skills. [Print out from internet page, source unavailable.] Rosenfeld-Johnson, S. and Smith Money, S. (2001) The HOMEWORK Book. Tucson: Innovative Therapists International. Rosenfeld-Johnson, S. (2001) Oral Motor Exercises for SLTP Speech Clarity. Tucson: Ravenhawk.
Limitations
Looking at this study objectively there are many limitations. Our subject size is small, specialised and diverse in age and ability; our assessments were informal; our results were not statistically analysed; there was a short time frame and there was a huge reliance on parental compliance. We also tailored a few different oral motor approaches to our needs and acknowledge that the authors of each approach would advocate following their full programme to achieve the best results. Despite these limitations, there was enough progress made by individual children to warrant a more in-depth
16
This is a self / other awareness game suitable for teenagers. It can be done in a group or as an individual task. It is a useful exercise for learning to appreciate other peoples points of view and as a way of planning real days out, for friendship enhancement.
BRAWN You need to make several different variations of a basic form, all beginning with the words A day out for 1. an elderly granny or grandpa 2. a friend who is the same age as you, and has similar interests, but has a broken leg 3. a two-year-old with his/her mother 4. a six year old girl 5. a ten year old boy 6. a teenage girl who loves shopping 7. a business man who is stressed out 8. a friend who is keen on sport. You will probably think of many more. Now you need to add details to the form - Meeting time in the morning; Morning activity; Any equipment / special clothing needed; Where to stop for a break; Where to have lunch; Afternoon activity; Where to have tea/supper/evening meal; Evening activity; End time. IN PRACTICE No matter what the ability level of your group, it would be wise - to begin with - to discuss the forms and fill in at least one together. Next, the clients might like to work in pairs, which will offer an opportunity to discuss and try to agree on ideas. If they prefer to work individually they can share the ideas after they have finished. Some clients may need to have photos, to enhance their understanding of the character types. These could be found in magazines.
This fun game is for a fairly large group, 8 to 10 participants ideally. It calls for careful listening skills, and teamwork. Knowledge of syllable splitting is also important.
IN PRACTICE (I) As a whole group, decide whether you are going to shout out names of pop songs, singers, TV programmes, or films (many films will be listed in the Radio Times). To avoid confusion, put the unwanted lists away, leaving out just one list. For this example, lets say films. Divide into two sub-groups, A and B. Each team chooses a leader. Each group chooses something from the list for example, group A might choose Lord of the Rings. (This title is a good one for a group of 4 as it has 4 single-syllable words.) Choosing the title and practising the simultaneous shout needs to be done out of earshot of the opposing team (or very quietly). Each person in group A is assigned a word. When group B is ready and listening, and at a signal from their leader, group A shout out their words all at the same time, so that what is heard is one multilayered sound. Now, group B must work out what was said. They then take a turn. This time, suppose they have chosen Simpsons Movie. Now each member of group B must be given one syllable to shout simultaneously. You may find that you cannot find a film with the right number of syllables in the title, so then you will have to get one person to say 2 syllables at double speed, or maybe one syllable very slowly. IN PRACTICE (II) The original party version of this game uses proverbs, and this is excellent if your clients are already aware of these sayings, or if you would like to promote more use of such figurative language.
Clairvoyance
MATERIALS Magazines, colour supplements, newspapers (but avoid page 3 type papers as they will cause so much diversion you might as well go home!) Scissors Paper and glue Pens Post-it notes
Not real clairvoyance of course, but denitely a form of mind reading! This activity promotes understanding of facial expression, and of other peoples points of view, and is useful for a group of fairly able clients with Aspergers Syndrome. There are already boxes of photo cards on the market, but in this version the accompanying newspaper article has a role to play. Also, these pictures can be written on, and will have been selected by the clients themselves.
CLAIRVOYANCE IN PRACTICE (I) Each group member cuts out their chosen 3 pictures of people. They mustnt read the connected article, as then they are not being clairvoyant. Set the article aside for later, or pass to the group leader for secure keeping. Now guess 3 things about the picture: 1. What could their name be? 2. What are they thinking? 3. What are their plans? 4. What are they about to say? Stick post-it notes onto the pictures with your interpretations and then pass on to your neighbour to see if s/he agrees. Now take the article back, and see how close your ideas were to the truth. IN PRACTICE (II) If the clients might be tempted to peep at the article you would have to resort to cutting the pictures out yourself, but then you will have to make sure you know which article goes with which picture.
17
REVIEWS
reviews
ELDERLY
Ethical Issues in Dementia Care: making difficult decisions Julian C. Hughes and Clive Baldwin Jessica Kingsley Publishers ISBN 1-84310-357-5 14.99
DEMENTIA
Person-Centred Dementia Care Dawn Brooker Jessica Kingsley Publishers ISBN 1-84310-337-0 14.99
Thought-provoking
The authors consider the ethical and moral issues in the day-to-day decision making which professional carers have to do regarding people with dementia. Although many theories are discussed, the case histories quoted throughout make this an interesting and thoughtprovoking read. It questions why and how we make decisions for people who cannot do so for themselves, emphasising the need for these to be person-centred. Communication, respect and relationships are also shown to be vital. This book is worth reading if you are involved with decision making, consent or end-of-life issues with any older clients, not only those with dementia. Jean McIntyre is a speech and language therapist at the Royal Victoria Hospital (a Care of the Elderly and Stroke Rehabilitation hospital) in Edinburgh.
asked questions and suggestions for data collection along with twenty-six adapted scales. With this advice in mind, TOMs has been easy to introduce within my local speech and language therapy team with support from my multidisciplinary colleagues. The new edition is a useful resource for any speech and language therapy or multidisciplinary team bookshelf. Sarah Stevens is a specialist speech and language therapist, working within a community neuro rehab team in West Kent PCT.
FACIAL PARALYSIS
'A Loss of Face' (Facial Paralysis A Guide to Self Help) D.J. Farragher www.dianafarragher.co.uk/ bookform.htm 9.95 + p&p
on prioritisation. However several key messages (for example, a prioritisation system needs to be transparent and explicit for parents) and prioritisation thinking tools (including decision trees) are available. Although not essential for everyday clinical work, this book is a valuable study for a practitioner such as a service manager who has to consider prioritisation in great depth. Clair Brookes is a Team Leader Speech and Language Therapist, working in the Mainstream School Service for Barnsley PCT. (Prioritisation will feature in our Spring 08 issue.)
COGNITIVE PSYCHOLOGY
An Introduction to Cognitive Psychology Processes and Disorders David Groome Psychology Press ISBN 1-84169-544-0 16.95
AAC
Practical Solutions to Support Communication (Collected Papers from the 16th Annual Augmentative Communication in Practice: Scotland Study Day) Allan Wilson (ed.) CALL Centre ISBN 978 1 898042 27 3 9.00
OUTCOMES
Therapy Outcome Measures for Rehabilitation Professionals Second Edition Pamela Enderby, Alexandra John, & Brian Petheram Wiley ISBN 0-470-02621-9 34.99
PRIORITISATION
Prioritising Child Health Sue Roulstone (ed.) Taylor & Francis Group ISBN 978-0-415-37634-1
Easy to introduce
This second edition of Therapy Outcome Measures (TOMs) combines and updates the previous separate manuals bringing together scales for speech and language therapists and rehabilitation professionals into one book. It reflects the current trend to identify and measure the gains made in rehab or therapy programmes and uses the now familiar dimensions of impairment, activity, participation and well being. The background information gives a useful history of its development and relationship to the World Health Organisation classification and there is extensive data on its reliability and validity. As well as advice on implementing the use of outcome measures there are frequently
22.99
SELF-ESTEEM
Self-Esteem Games for Children Deborah M. Plummer Jessica Kingsley ISBN 1-84310-424-5 12.99
Fresh ideas
This book reminds clinicians of the importance of childrens self-esteem as a basis for learning. It offers a wide selection of games which can be used to
18
REVIEWS
support childrens self-esteem; these are divided into 9 sections: Warm ups Self knowledge Friends and feelings Feeling OK about being me Taking care of myself More than just talking Solving problems All my senses Wind downs A clear layout helps to find games appropriate to childrens age and language ability and the key skills to be promoted such as self-awareness, listening and concentration. Ideas for adaptation are supplied so games can be adjusted to tie in with therapy goals. The book contains so many fresh ideas for group therapy; readers will be inspired and well-equipped to promote self-esteem more often in practice. It is excellent value for money. Melanie McClean is a speech and language therapist with Central Aberdeenshire Community Health Partnership.
others - initially to act in the drama and then in social contexts. Schneider herself comments, Although some of these techniques can certainly be used in social skills groups, they are most effective in a more intensive context in which acting and being a critical audience member are focal points. The ideas are excellent and well laid out. I found the scripts, although clearly presented, to be culturally American and each would need to be changed to be culturally British. This is an innovative approach to social skills training for students with Aspergers Syndrome who will tolerate acting, and for a group leader with energy and commitment to drama. Jane Baker is a speech and language therapist with South Devon Healthcare NHS Foundation Trust.
I doubt many of us will have the time or determination to get through the overuse of examples to get to these key points. I found the excessive references to Mandelstams own local situation particularly unhelpful. Neither does this book offer answers to the current crisis; he concludes they may indeed be elusive. A useful reference for those current illustrations of the state of the NHS, but not an easy read in any sense. Deborah Green is a principal speech and language therapist with Kingston PCT.
An excellent reference book for both students and practising clinicians and a useful resource for any speech and language therapy department. Jo Knights is a principal speech and language therapist working in Lambeth PCT with dysfluent adults and adults with acquired neurological disorders.
ASPERGERS SYNDROME
Aspergers Syndrome and Employment (DVD) Nick Dubin Jessica Kingsley ISBN 1-84310-849-6 19.99 (incl VAT)
DYSFLUENCY
Stuttering and Cluttering (Frameworks for understanding and treatment) David Ward Psychology Press ISBN 1-84169-334-0 39.95
Positive self-reflection
If you work with young adults with Aspergers Syndrome and want to help them with job seeking considerations, then this DVD is for you. It features Nick Dubin, a man with Aspergers Syndrome. He discusses his difficulties in workplace settings, shows how he eventually discovered his employment niche, and offers useful advice. There is also an excellent commentary by Gail Hawkins (author of How to Find Work that Works for people with AS). She lists many aspects that make those with the condition highly employable for some jobs. This should promote positive self-reflection by job seekers with Aspergers Syndrome and raise their self-esteem. It would also be an invaluable resource for speech and language therapists who collaborate with Careers Guidance staff. Alison Roberts is a speech and language therapist specialising in work with young adult clients with Aspergers Syndrome at Ruskin Mill College in Nailsworth, Gloucestershire. (Alison wrote about Aspergers Syndrome and the workplace in SLTP our Spring 07 issue.) ADVERTISEMENT
DRAMA
Acting Antics: A Theatrical approach to Teaching Social Understanding to Kids and Teens with Aspergers Syndrome Cindy B. Schneider Jessica Kingsley ISBN 1-84310-845-3 14.99
Innovative approach
A step-by-step programme for someone interested in setting up a drama group to engage teenagers with Aspergers Syndrome, and through the drama to teach social understanding. Students are encouraged to observe and copy gesture, mannerisms, tone of voice etc. to convey meaning and thereby notice these behaviours in
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The first hurdle to overcome was finding an appropriate model. The internet came up with what appeared to be the answer and the company supplying the equipment offered to lend us a viscometer on free loan for one day. As anyone who has ever investigated viscometers knows, they are hugely expensive as a piece of kitchen equipment (over 3000). We approached a London charity for funding and this was found to be a distinct possibility, subject to a clinical trial of the equipment showing its suitability. THE TRIAL The viscometer was larger and heavier than we had anticipated, but we felt this was not an insurmountable difficulty if it proved advantageous in every other respect. The proceedings We posted flyers asking for volunteers to take part in the trial. Those coming forward comprised speech and language therapists, care staff experienced and inexperienced in the use of food thickener - and volunteers from various professional bodies including physiotherapy and nursing staff. Twenty five volunteers took part in the trial. Each was given the same set of instructions: 1. Take 200 ml beaker of water (already measured) 2. Add thickener 3 level tablespoons (measure provided) 3. Whisk until dissolved (whisk and fork provided) 4. Note down the time (clock provided) 5. Wait 5 minutes (timer provided) 6. Take measurement on viscometer 7. Clean viscometer (under cold tap) The evidence We asked the volunteers to say on a scale of 0 -5 1. how easy was the viscometer to read 2. how easy was the viscometer to clean 3. would they be happy using the equipment on an everyday basis? Their responses are in figure 1. Eighteen (72 per cent) of the volunteers said they would not be happy to use the viscometer on an everyday basis. The reasons given included: Too bulky Too heavy Reading fluctuating and erratic Procedure takes too long Not easy to take out and about Backache as a result of holding the equipment upright to try to achieve a regular reading (one volunteer) Instruction lacking as to the exact point when reading to be taken Not known if it was necessary to unplug for cleaning. THE VERDICT The viscometer we trialled would not be suitable for helping carers achieve the correct consistency of drinks. THE DEBRIEFING Although the trial itself could be said to have failed, several significant factors emerged during the day. We were already aware that: 1. Users of thickener in drinks often did not measure the amount of fluid. 2. Users of thickener often did not read the tin to find out the correct quantity.
Ros Hunter, Adrienne Fenton, Margaret Margerison READ THIS IF YOU WANT TO FOCUS ON PREVENTION OF HARM HAVE YOUR RECOMMENDATIONS UNDERSTOOD TRY OUT DIFFERENT SOLUTIONS
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3. Some users did not leave sufficient time for the drink to reach its level of thickness before offering the drink or adding additional thickener. But we had not realised how widespread were the practices of: 4. Not following the instructions as to how to mix in the thickener (so volunteers added the whole quantity at once rather than slowly adding whilst mixing in at the same time). 5. Under-mixing so that lumps remained. (This was evident in the trial as we used transparent beakers to contain the 200ml cold water.) 6. Overfilling or underfilling the measure supplied with the thickener We also would not have anticipated that 7. The most experienced users of thickener were not necessarily the most able. In view of the variability in the methods used it is perhaps not surprising that the measurements on the viscometer readings were also wide-ranging. As we did not know how significant the range was, we were not able to reach any clear conclusions on the figures in relation to the thickness we were aiming for (Stage 2 National descriptor, BDA, 2002). We were contacted by the suppliers of the viscometer who were interested in the outcome of our trial. The company replicated our procedure to see if their results were comparable. Their single trial concluded that: (a) the mixture needed to be stirred moderately with a fork for a short time (say up to 45 seconds) (b) the mixture should be allowed to stand for at least 10 minutes (c) the probe of the viscometer should be held steady in the mixture (d) if these procedures were followed, then the viscometer would give reasonably reproducible results. This reinforces our results and the conclusion of our volunteers that the viscometer would not be practical in a domestic context. So, how to move on? THE AFTERMATH Some larger services have research projects into viscometers and are in the process of developing much-needed resources to assist staff and carers achieve the thickness of drinks recommended by speech and language therapists. We await the outcome of their research.
In the meantime we set up an afternoon workshop to include four experienced users of thickener care staff who make thickened drinks on a regular basis and three speech and language therapy staff to develop clear guidelines for appropriate use of thickeners (figure 2). These guidelines are now included in Rotherhams Easy Eating and Drinking manual (in progress) which is to be distributed on a pilot basis to 12 homes and Day Centres in the near future. As part of our Eating and Drinking Awareness sessions, more detailed instruction is now given into the practical usage of thickener in drinks. Margaret Margerison, Adrienne Fenton and Ros Hunter are speech and language therapists with the Learning Disabilities Service, Rotherham, e-mail Margaret.Margerison@ RotherhamPCT.nhs.uk. They are supported by speech and language therapists Joanna Howe, Jo Wilman, Louise Bowden and Ceri Robertson.
Figure 1 Volunteers views 1. How easy 0 1 2 was the viscometer to 1 3 9 read? On scale of 0-5 2. How easy was viscometer to clean? 3. Would you be happy to use the viscometer on an everyday basis? 0 3 1
1 1
13
25
YES 7
NO 18
Figure 2 Guidelines for making a thickened drink Guidelines for a double cream consistency National Descriptor Stage 2 1. Organise equipment: measuring jug clients cup knife thickener scoop measure separate container (eg. a cup) for thickener clean, dry teaspoon / fork / whisk. 2. Measure 200ml water in a measuring jug 3. Pour the water into the clients cup 4. Measure carefully the right amount of thickener powder into a separate container using the back of the knife to ensure level scoopfuls: 23/4 scoops of Thick n Easy 3 scoops of Nutilis 3 scoops (tablespoons) of Resource ThickenUp 5. Commence stirring water in cup, whilst gradually adding thickener, continuously stirring vigorously (for 1 -2 minutes) until all the powder is dissolved and no lumps remain. (NB It is important to use a fork or whisk to stir in Resource ThickenUp) 6. Leave to stand for 2 minutes (NB If Resource ThickenUp is used, there is no need to leave to stand serve immediately) 7. Check the consistency on the back of a teaspoon to ensure the double cream consistency is achieved 8. Offer drink to client.
Developed by Christine Pask, Kate Priestley, Joanna Franklin and Vicky Holding, John Street Nursing Home, Thurcroft, 2006
References
British Dietetic Association (2002) National Descriptors for Texture Modification in Adults. London: Joint Working Party of the British Dietetic Association and the Royal College of Speech & Language Therapists. Cichero, J.A.Y., Jackson, O., Halley, P.J. and Murdoch, B.E. (2000) How thick is thick? Multicenter study of the rheological and material property characteristics of mealtime fluids and videofluoroscopy fluids, Dysphagia 15 (4), pp.188-200. Goulding, R. and Bakheit, A.M.O. (2000) Evaluation of the benefits of monitoring fluid thickness in the dietary management of dysphagic stroke patients, Clinical Rehabilitation 14, pp. 119-124. Miller, J.L. and Watkin, K.L. (1996) The influence of bolus volume and viscosity on anterior lingual force during the oral stage of swallowing, Dysphagia 11, pp. 117-24. SLTP
REFLECTIONS DO I KNOW TO WHAT EXTENT MY RECOMMENDATIONS ARE FOLLOWED? DO I HAVE THE SUPPORT OF A DEPARTMENTAL STRATEGY TO RAISE AWARENESS AND COMPLIANCE? DO I NEGOTIATE WITH COMPANIES TO TRIAL PRODUCTS?
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21
WINNING WAYS
Going forward has to involve divesting ourselves of the things that hold us back. Reflecting on the role that attachment plays in our choices, life coach Jo Middlemiss finds awareness is all that is needed.
READ THIS TO BE MORE AWARE OF THE BELIEFS AND ATTITUDES THAT AFFECT YOUR BEHAVIOUR UNHELPFUL NATURE OF BLAME CHOICE YOU HAVE IN HOW YOU RESPOND TO EVENTS conditioning. Attitudes and behaviours and beliefs have more than likely been imposed by family and society, therefore certain behaviours and responses are expected and deemed natural, when an altogether different behaviour and response could be more effective. Even after we become aware of our conditioning, blame is still not a helpful attitude. Awareness is all that is needed. When on holiday, the Richard and Judy pile comes with me, honestly! But I also take at least one book which enlightens as well as entertains. This summer it was The Way to Love, the last meditations of Anthony De Mello. In it he tackles attachment fairly strongly. In other words, he sees it as the cause of most ills. He believes that not having what we want, or the fear of losing that which we have, is the chief reason for unhappiness. He lists what he calls four truths: 1. You must choose between your attachment (and we all have many) and happiness. 2. Where does the attachment come from? It comes from a lie: without this person, or thing, or job, or result, I cannot be happy. 3. Perspective is vital if we want to be rid of attachments. The world is much bigger than any trifle of mine. 4. No person or thing outside of you has the power to make you happy or unhappy. That choice is yours alone. (summarised from De Mello, 1996, pp.49-53).
Powerful
Our training then went on to teach us how the bonds formed in those very early days are unconsciously powerful right to the ends of our lives. People who have had a secure attachment experience early on are more likely to think well of themselves and be confident. Those who are anxiously attached know that they are loved but probably fall into the need to be good category in order to get their needs met. Those who are insecurely attached - or not attached or bonded at all - are at a real disadvantage when it comes to social interaction. All this information is very helpful when dealing with clients, but what about learning more about ourselves and dealing with the ingrained psychological attitudes that we dont really know anything about? As we have discussed many times before, awareness is once again the key. Until we become aware of the beliefs and attitudes that affect our behaviour, there is nothing whatever we can do to change things. I have always listened with interest to people who blame events and people for their present circumstance: mother, father, boss, partner, weather, school - and everything out there. Long before I was ever in the Life Coaching line of work I could never understand why grown-up adult people could not just take their own life by the scruff of the neck and make changes without having to find a guilty party for all their miseries. But if I cant blame out there, must I blame myself? I hear you ask. The answer is no to that also. The place to look for an answer is in our
- my camera - slip out of his hands. It fell on some leaves, stayed there for a tantalising second and crashed on down the full 200 feet of tumbling water. How glad I was to have read the wise words on attachment. A deep breath, a rueful smile and a shoulder shrug would not have been my usual response, but I have learned that my happiness does not depend on a camera, or carefulness. It was an accident. (Though I was glad it wasnt me who dropped it!) Going forward has to have something to do with divesting ourselves of the things that hold us back. These attachments come in many forms and we are often conditioned into thinking that there is no other way. There is always another way. Andrew Matthews in his book Follow Your Heart restates De Mellos ideas in a slightly more contemporary style (p. 109): We can make a conscious decision, No one is going to ruin my day. We make a pact with ourselves No arrogant bank clerk, no parking meter attendant, no traffic cop, no waitress with a chip on her shoulder is going to mess with my 24 hours.We remind ourselves that in the context of world events, a confrontation with a rude check out clerk is not that dramatic. Nothing I say means to minimise the things we experience in our everyday lives. Good things and bad things happen to everyone at one time or another. The only thing we can actually choose is our response. Choosing wisely makes sense.
References
Bowlby, J. (2005) The Making and Breaking of Affectional Bonds. New edn. Oxford: Routledge. De Mello, A. (1996) The Way to Love. London: Doubleday. Matthews, A. (1999) Follow Your Heart. LA: Price Stern Sloan. SLTP
Liberating
In some ways this is very uncomfortable teaching and in other ways it is wonderfully liberating. After reading this one Sunday morning, my husband and I set off on an enormous hike to the top of a waterfall. It was stark and beautiful. As I posed for a picture my husband let the camera
Jo Middlemiss is a qualified Life Coach with a background in education and relationship counselling, tel. 01356 648329. Jo offers readers a complimentary half-hour telephone coaching session (for the cost only of your call). You may want to phone Jo if you are going through a major change (such as coping with being a student, starting a first job, promotion or returning to work after a career break), or if you find yourself in circumstances which make it difficult for you to do your job in the way you want to. While all Jos work informs Winning Ways, your contact is confidential, and no personal or identifying details will be given.
22
resources
Go travel
GOJO is a web campaign to help young people who have difficulties or fears using public transport, including those with learning disabilities, feel more informed and confident. The site has facilities for users to make comments and add suggestions. www.mygojo.co.uk (Source = Contact a Family)
cochlear implants
The National Deaf Childrens Society is calling for improved funding and access to cochlear implants in light of the benefits reported by the first generation of young people to be fitted with them. Cochlear implants: young peoples views is based on interviews with 29 people aged 13-17, most of whom have had their implants for at least seven years. There were nine times more positive comments than negative ones, but forty per cent reported problems when sounds were very loud or quiet, particularly when there was a lot of background noise. Two thirds of the respondents preferred to use spoken language while one third preferred to use spoken language together with some signs. Overall, the authors report that many of the young people were flexible in the way they communicated, seeing achieving effective communication as the most important issue. The first cochlear implant took place 20 years ago and more than 2500 children have now received one. http://www.ndcs.org.uk/family_support/ our_publications/cochlear_implants_ .html Meanwhile, the charity Deafness Research UK is reporting that a tiny electrode array placed directly in the auditory nerve could overcome the limitations of cochlear implants. It says scientists at the University of Michigan have shown it's possible to implant a tiny, ultra-thin electrode array that can successfully transmit a wide range of sounds to the brain into the auditory nerve of animals. If the idea is supported by further animal and human studies, profoundly and severely deaf people would have another option that could allow them to hear low-pitched sounds common in speech, talk in a noisy room, identify high and low voices, and appreciate music areas where cochlear implants, though a benefit, have significant limitations. www.deafnessresearch.org.uk
Beyond Words
Supporting Victims has been added to the Books Beyond Words series for use by people with learning disabilities. The stories, told through pictures, aim to enable discussion about difficult topics and emotions. www.rcpsych.ac.uk/publications.aspx
Forced marriage
Guidelines are now available to assist health professionals who suspect cases of forced marriage. www.fco.gov.uk/forcedmarriage
Parkinsons disease
The Parkinsons Disease Society has produced a leaflet What you need to know about the NICE guideline for Parkinsons disease. This may be of particular interest in Northern Ireland where the National Institute for Health and Clinical Excellence guidelines have now been adopted. For a copy of the leaflet, call 0808 800 0303.
Information standards
The Scottish Accessible Information Forum has revised its Standards for Disability Information and Advice Provision in Scotland. www.saifscotland.org.uk
Workplace bullying
The 2007 Ban Bullying At Work Day is on 7th November. Participation packs and information for employees and employers are available at: www.banbullyingatwork.com
AAC
Techcess has launched two new communication aids. 1) By inserting a SIM card into the Tellus Mobi, users can communicate by SMS (text) messaging and make and receive mobile phone calls using the devices voice. It can also be used to write messages onto an interactive whiteboard and for wireless access to the internet. 2) Allora, a portable predictive text-to-speech output device is for people with degenerative conditions such as motor neurone disease. www.techcess.co.uk
Disability Living
Contact a Family has written a guide to claiming Disability Living Allowance for children. Individual copies are free. Helpline, tel. 0808 808 3555
Lone parents
The Lone Parents Guide to Caring for a Child with Additional Needs is available from One Parent Families|Gingerbread. The charity says twenty-seven per cent of lone parents have a sick or disabled child. For a copy, call the helpline on 0800 018 5026. www.oneparentfamilies.org.uk/disabledchild
23
HOW I
HOW I (1):
Having set up a service model, I wanted to evaluate the effectiveness of this pathway. This article describes the service and the outcomes for all cases referred over the two year period from July 2004-2006. It covers: 1. Number and source of referrals to the community service 2. Involvement of health visiting services 3. Multi-agency working 4. Intervention (and how it links with the current evidence base for dysphagia) 5. Outcomes in particular how well I had enabled parents and carers to manage their own childrens eating and drinking difficulties 6. Reflections and looking to the future. 1. Referrals Ages of the children are in table 1, and a breakdown for source of referrals in table 2. Among the pre-school population, reasons for referral fell into three categories: i. difficulties at the weaning stage of development ii. carer concern because of gagging and choking iii. failure to thrive as measured by health visitors on standard growth charts. The children of school age had significant physical and cognitive difficulties, with associated disorders of chewing and swallowing. Table 1 Ages of children at referral
Age: Number: 0-12 1-2 2-3 3-4 5 Children months years years years years at school 4 3 3 4 2 5
24
HOW I
25
HOW I
ers in home and education settings has been challenging. It has allowed me reflect on my role as a feeding specialist in many ways. An important part of my intervention is education, which has to take account of variables such as maternal anxiety (all the carers of the pre-school children reported feeling de-skilled by having their child referred for eating and drinking difficulties) and knowledge of normal eating and drinking. Increasing knowledge of the normal processes of eating and drinking can assist development of eating and drinking for children at risk of swallowing difficulties (Siktberg and Bantz, 1999). Education support workers and carers had close daily contact with the children with whom they worked, and had established ways of feeding children. The RCSLT guidelines (2005, p.70) state, Caregivers need to be able to facilitate optimally safe efficient and pleasurable eating and drinking. Working with carers and demonstrating techniques in their environment makes any intervention realistic and of practical benefit. Health visiting colleagues were able to form part of the assessment and treatment process with their expertise of feeding management.
I am working with the health visitor who is responsible for development of education within community nursing in Angus to provide written guidelines on feeding development, and guidance about when to refer to the speech and language therapy service. These will also form part of a training package to be delivered to public health nursing staff. This training will include: a. The development of eating and drinking b. The normal process of eating and drinking c. Causes of difficulty d. Guidance on how to help e. Referral pathway. I have found that through working closely with health visitors and education support workers they have gained a level of knowledge which allows them to maintain a feeding programme when I am not present. The above training will empower nursing colleagues in offering advice for families who are experiencing feeding problems, particularly at the weaning stage. My experience of providing a community service has taught me that flexibility of approach is vital. Safe and effective practice has to adapt to as many settings as there are children referred.
Joanna Manz is a Senior Specialist Speech and Language Therapist at Abbey Health Centre, East Abbey Street, Arbroath, Angus DD11 1EN, e-mail joanna.manz@nhs.net.
References
Armstrong, L. & Pendlowski, A. (2002) Twenty miles between clients, Bulletin of the Royal College of Speech & Language Therapists May. Hotaling, D. L. (1990) Adapting the mealtime environment: setting the stage for eating, Dysphagia. 5 (2) pp. 77-83. Masel, C. & Franklin, L. (1996) Management of Eating Difficulties in Children with Failure to Thrive, Australian Communication Quarterly Spring. Morris, S.E. (1989) Development of oral-motor skills of the neurologically impaired child, receiving non-oral feeding, Dysphagia 3 (3), pp. 135-54. Royal College of Speech & Language Therapists (2005) Clinical Guidelines. Bicester: Speechmark. Siktberg, I.L. & Bantz, D.L. (1999) Management of children with swallowing disorders, Journal of Paediatric SLTP Health Care 13 (5), pp. 223-9.
HOW I (2):
he Paediatric Combined Feeding Clinic in Torbay has evolved over the last twelve years and is the first of its kind in the South West Peninsula. It was precipitated when, in addition to my role with children with complex communication and language difficulties, I began to receive rapidly increasing referrals for babies and young children with feeding problems; the legacy of modern technology is a cohort of infants who survive in spite of being born prematurely (Kennedy, 1997). These problems ranged from highly complex to relatively mild. At one end, there was an impaired ability to protect the airways and significantly compromised fluid / solid intake which required swift, informed decisions on total or partial nonoral feeding. At the other, were children with secondary behavioural difficulties arising from more subtle oromotor limitations and / or unrecognised sensory defensiveness who required a supported management plan. I was dealing with children suffering from failure to thrive, inadequate nutrition, frequent chest infections, compromised developmental progress (with its link to long-term health problems such as cardiovascular disease / diabetes mellitus), food avoidance and the effect on family dynamics and quality of life for child and carers. Families were being offered isolated advice which led to delayed
SPEECH & LANGUAGE THERAPY IN PRACTICE Autumn 2007
treatment, and there was inefficiency from the overlap of clinical input. Disproportionate time was spent on communication between disciplines and there were multiple appointments over an extended timescale for families.
The main functions of the clinic are to: Assess the problem and offer a plan Promote early identification and treatment Support parents and professionals Provide resource to other professionals Provide a link with other feeding teams. Our objectives are to: i. Enable safe feeding and adequate nutrition ii. Offer clear, realistic and achievable advice iii. Reduce parental anxiety / stress iv. Enable mealtimes to be more sociable v. Maximise consistency of approach across environments vi. Reduce appointments for both families and professionals. Our caseload covers children with neuromuscular difficulties, specific syndromes, prematurity, acquired or progressive conditions, craniofacial abnormalities, learning disability, cardiac / respiratory related difficulties and gastro oesophageal reflux. Their presenting problems include: Impaired swallow function Impaired co-ordination of suck breathe swallow synchrony Risk of aspiration safety issues Impaired oromotor function Texture / transition difficulty Difficulty with chewing / choking / vomiting Failure to thrive Reduced endurance Non-oral to supplementary to full oral feeding (and vice versa). There are exceptions however for: 1. Children under 3 years with purely behavioural and management problems. They are seen by the small,
26
HOW I
dedicated Nurture Team, mainly comprising health visitors, social services care workers and some clinical psychology input. When required they link with myself and / or our paediatric dietitian. 2. Children with eating disorders such as anorexia. They also have a separate team which does not require a speech and language therapist, although rarely there may be a crossover of clinical observation or videofluoroscopy where felt to be useful. 3. Children with metabolic disorders, who are not seen in the Combined Feeding Clinic unless oromotor function is also affected. 4. Children with autistic spectrum disorder, who occasionally present initially via the Combined Feeding Clinic, but are otherwise advised separately as part of multidisciplinary assessment or ongoing input. The Combined Feeding Clinic is held once a month apart from August. It acts as a central point, or hub, with spoke appointments. Spoke sessions may include a joint occupational therapy / speech and language therapy appointment for positioning and seating or looking at tactile defensiveness and oral sensitivity (so closely linked but a diversion into sensory integration issues might take up the entire magazine!), or a medical appointment regarding neurological, ENT, developmental, cardiac, genetic, dental, orthodontic and other issues. I home visit, often with a specialist community nurse or health visitor, who continue support and follow-through. The home visit sets both assessment and advice in context.
Family orientated
Not everyone who is referred needs to be seen in the Combined Feeding Clinic; they may be seen only by speech and language therapy or jointly by the dietitian / speech and language therapist. The more complex cases benefit from the Clinics holistic aspect of problem solving and melded advice with parents at the centre. We hold the Clinics in our large room in the John Parkes Unit where the setting is family orientated and more relaxed than an acute ward might be. Families and professionals may travel some distance as this is a rural area. If youve time to look at a map, youll see Torquay where the clinic is based, up the coast to Dawlish, over to Moretonhampstead and down across the Moor (Dartmoor) past Ashburton to Dartmouth. (Yes, its absolutely beautiful arent we lucky to work here!) The environment, however, doesnt change the difficulties,
anxieties or needs of families whose children have extra needs, and in Torbay itself we sometimes see microcosmic pockets of inner city. The range of difficulties can be very wide. For example, we see children with acute respiratory and / or neurological problems who cannot manage their own secretions. One child, who is now 7, was extremely premature (born at 23 weeks) and required a tracheostomy. He has gradually gone from non-oral to normal oral intake, with the tracheostomy now removed. Another child with an unusual syndrome required a gastrostomy long-term as oral feeding was unsafe. This is perhaps where a clinical psychologist might also have a role, as feeding is a basic maternal instinct and its really hard for some mothers to accept that oral feeding is unsafe. Several mothers who have had to go down this route have said they would be very happy to talk with other families where this might be the best option. Some of our children need a close input to modify aspects of feeding - positioning, oral-facial techniques, modifications of textures, utensils, nutritional supplements - resulting in safer, more nutritional and less stressful mealtimes. With review and monitoring they continue to thrive. Others, as they mature, are unable to sustain nutritional status and may require a gastrostomy plus oral feeds. At the milder end, timely advice and support reduces or eliminates the problem altogether. An argument for early intervention is that we still have some referrals of older children where aversive behaviours can be seen as secondary problems arising from their early history.
We noted that children who on initial presentation had been at risk of aspiration showed improved feeding, with a small minority only referred for gastrostomy or supplementary feeding. Generally there was improved nutritional intake, status and growth, along with improved drinking, chewing and oromotor function, facilitating normal weaning and age appropriate feeding development. We also noted increased tastes through appropriate textures, appropriate timing and feeder techniques, increased confidence for both child and carer and increased awareness of feeding issues. The non-attendance rate was very low, and was for initial appointments only.
Awareness raised
Following the 2002 audit, we achieved a paediatric videofluoroscopy service instead of families having to travel elsewhere. Also, awareness was raised and junior doctors, other allied health professionals and nursing students now attend the clinic as part of their continuing professional development. We also now have a full-time specialist paediatric dietitian. We have occasional access to a clinical psychologist but only in specific circumstances, such as where a child has a learning disability. We would welcome the addition of a clinical psychologist to our core team. A significant funding issue remains with regard to more designated speech and language therapy time. Our current service is restricted to hospital (paediatric wards and Child Development Team) cases, children on respite and a closely capped caseload of referrals from community and schools (RCSLT, 2005). We are unable at present to provide any cover for annual, study or sickness leave. (The impact of this was brought home when I was injured in the Berkshire rail crash of November 2004 while returning from a course at Great Ormond Street; it was slow motion mode for a while, but we speech and language therapists are a resilient lot!) We would like to be able to offer a much more comprehensive service, including expansion of training opportunities. The national education policy for integration means that, for example, there are a great many more children with physical disability in mainstream schools. Some of these children need individually tailored care programmes and extra mealtime support, and there is a need to raise overall awareness and understanding as well as specific training.
Objective
To get a more objective picture of the service, we audited the Combined Feeding Clinic from January to June 2002 (total clients = 65).
Outcome Discharged as improved to normal / optimal Ongoing treatment Pending discharge (treatment complete) Reviewed for changing need or transition Referred on to further medical investigation (eg. ENT / neurologist) Advised supplementary non-oral Did not attend initial appointment Advised non-oral feeds only No. 21 15 8 8 6 4 2 1
ADVERTISEMENT
27
HOW I
I remember one father saying to me, How difficult can it be putting a spoon in a childs mouth?, and it still amazes me that so many people, including highly educated ones, think that feeding is a bit like being a postman open the box and itll go down! But where, how and with what effect This is why, at the suggestion of our consultant paediatrician, we launched a patient satisfaction questionnaire. The questionnaires were piloted by two families initially and then sent out to 40 families. The questionnaires were divided into child and clinic categories (the full questionnaire is available in the members area of www.speechmag.com). We had a 62.5 per cent return and felt that this, like the low failure to attend rate, spoke for itself. As one respondent said, As a mother, it is such a basic task to feed your child isnt it - its something most of us take for grantedwithout the support, I feel I would have become very depressed. Tables 2 and 3 show the ages of respondents children when first seen at the clinic and at the time of completing the questionnaire. Table 4 gives a breakdown of known / unknown cause, and table 5 shows the co-existence of other difficulties.
Table 2 Age first seen at the Combined Feeding Clinic Q1. How old was child when first seen at clinic?
12 10
Interestingly, 100 per cent of respondents found the paediatric food diary (slightly adapted from McCurtin, 1997) helpful to them, as it was to the professionals. The initial team discussion and problem solving was useful to 96 per cent. More than half were keen on a parent support group and a follow-up phone-in service was 100 per cent requested. (This is available, but not as a formalised helpdesk.) On the question of hypo / hypersensitivities, a significant number of children were tactile defensive. As this needs to be tackled first before a successful oral desensitisation programme can be implemented, here is another instance of the value of inter-disciplinary working, in this case between speech and language therapists and occupational therapists. Another interesting note was from a question about siblings; in our questionnaire, 28 per cent were only children. In an audit of the Jersey Multi-disciplinary Feeding Clinic (Glaun et al., 2004), whose team also includes the equivalent of our Nurture Team, 85 per cent were only children. Is this significant, and does it relate to parental experience and confidence? The only question which was, notably, not answered
(but this could have been because it wasnt very well worded) was the one asking if anyone else in the family had had difficulty with eating. Most of our cases are medical but in the milder cases there have been mothers with eating disorders and / or postnatal depression. This is perhaps another pointer for clinical psychology input. Parents put lots of comments - not only in the box provided but all over the questionnaires! and a few are below. I hope they may one day lead to increased service provision for our families. I did feel like I was thought of as a neurotic mother but since I feel like Ive been listened to. People listen and understand / dont feel so alone / feel more confident / feel more relaxed. Felt frustrated and scared. Helped me to let go of the idea that (one person) can make everything ok. Always something new to learn / made me more aware / helped me understand. Excellent exercises given. My daughters life is much more settled now and so is mine! Thank you! Absolutely wonderful outcome. Do e-mail me if any of you have any suggestions or comments its always so good to talk! Rosemary Parker is a clinical specialist speech and language therapist with South Devon Healthcare NHS Foundation Trust at the John Parkes Childrens Unit, Torbay Hospital, Torquay TQ2 7AA, tel. 01803 655581, e-mail rosemaryparker@nhs.net.
No. of patients
8 6 4 2 0
No. of patients
References
<1 year 1-2 years 3-4 years 5 years 6 years 11 years 12 years
<1 year
1-2 years
2-3 years
3-5 years
26% 7% 26%
Glaun D., Phillips, S., Fa, J., Wycherley, J. & Malpas, T. (2004) Evaluation of Outcomes at Jerseys multidisciplinary feeding clinic for children. Unpublished. Kennedy, G. (1997) in McCurtin, A. The Manual of Paediatric Feeding Practice. Bicester: Speechmark. McCurtin, A. (1997) The Manual of Paediatric Feeding Practice. Bicester: Speechmark. Royal College of Speech & Language Therapists (2005) Clinical Guidelines. Bicester: Speechmark.
Useful resources
Arvedson, J.C. & Lefton-Greif, M.A. (1998) Pediatric Videofluoroscopic Swallow Studies. The Psychological Corporation. Frick, S.M., Frick, R., Oetter, P. & Richter, E.W. (1996) Out of the Mouths of Babes: Discovering the Developmental Significance of the Mouth a Book Especially for Parents and Other Grown-ups. Hugo, MN: PDP Press. Wolf, L.S. & Glass, R.P. (1992) Feeding and Swallowing Disorders in Infancy. Therapy Skill Builders. Other material recommended by Rosemary Parker is in magazine extras at www.speechmag.com.
41%
Table 5 Other difficulties None Seizures Allergies Social Comm Speech/Lang Tonsils/Adenoids Hearing Vision Stiff/Flop/Muscle Tone
3 5 4 2 16 4 2 7 14
Acknowledgements
I would like to say a big thank you to the wonderful people who gave their advice and support in helping me to set this clinic up. The qualitative and quantitative data from the sample supplied by audit (2002) and the patient carer survey (2007) belongs to South Devon SLTP Health Care Trust.
28
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13 September 2007 Parkinsons Disease Society Conference Todays challenges, tomorrows opportunities London Includes sessions on dysarthria and participation in research 264.38 (bursaries may be available) www.mahealthcareevents.co.uk or 01722 716 007 17 September 2007 Signalong conference Communicating Choices London, 95.00 www.signalong.org.uk (news) 18-20 September 2007 Effective Speech and Language Therapy for People with Down's Syndrome London, 200 16 October, 21 November 2007 & 15 January 2008 3 day Co-worker Training Please contact Lesley Alabaf at the Down's Syndrome Association on 0845 230 0372 or email lesley.alabaf@downs-syndrome.org.uk 20 September 2007 Community Rehabilitation Teams Network annual conference Commissioning Rehabilitation: Practical Guidance for Service Providers Sheffield www.rehabteams.org/CRTconference.pdf 21 September 2007 Working together to get it right for every child: transdisciplinary working for children and young people with communication disability Edinburgh, 130 Speakers include Jennifer Reid, Judy Roux and Kate Malcomess. www.ican.org.uk 10 October 2007 (Sligo) 27-28 November 2007 (Dublin) Acquired Brain Injury Information and Education Events Healthcare workers / Allied professions 65 No charge for people who have experienced a brain injury or their families kcahill@peterbradleyfoundation.ie 9 November 2007 Talking Mats Training London, Royal College of Speech and Language Therapists Joan Murphy and Lois Cameron of Stirling University will run a hands-on full-day course in the use of the low-tech communication framework. For further information see www.talkingmats.com or contact Anna Fenge at info@talkingmats.com or tel. 01786 467645
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MY TOP RESOURCES
JULIET CONDON IS A SPEECH AND LANGUAGE THERAPIST WITH COVENTRY AND WARWICKSHIRE PARTNERSHIP TRUST, E-MAIL JULIET.CONDON@NHS.NET.
When I began this article I was a newly qualified therapist! A year further down the line, its been interesting to look back and see what Ive learned. I graduated from Queen Margaret University, Edinburgh in July 2005 and work in the field of adult learning disabilities. I am mostly in the community, providing speech and language therapy to day centres and residential homes. A large part of what I do involves the wider multidisciplinary team and working alongside care home staff. We provide a lot of training to raise staff awareness of different communication issues and ways that they can adapt the environment (total communication). I also spend two sessions a week in the forensic service a unique, interesting and challenging opportunity for a new graduate. I am involved in direct assessment and therapy with clients in medium and low secure units as well as helping the team provide a wider service including training to the on-site staff. I really enjoy my job as it is so diverse and interesting. It is great working as part of a large and dynamic team there is always some new project to get involved in! 1. PEER SUPPORT I am very lucky to have started work with three other newly qualified therapists. This may be fairly unusual but talking things through with your peers and course mates is useful and vital for your sanity. Peers reassure you that you are not alone in your worries about being a newly qualified therapist - and they also provide valuable information. You are all learning about the job at an amazing rate and each person is picking up different pieces of information about services, the Trust you work in, therapy methods to try and so on. We have regular meetings with other newly qualified therapists in our Trust to discuss common concerns such as pay scales and pensions, and to have talks from specialist therapists. 2. INITIAL SCREENING ASSESSMENT BAG This assessment tool made up by therapists in our team contains real objects (eg. comb, sock) and laminated photographs of the same objects and matching symbols. We use it to assess a clients ability to match, select and name the various objects, photos or symbols. We have selected objects that are adult appropriate and used in daily living. The assessment can be used at whatever level seems appropriate. 3. INTERNET A vital source of information on medical conditions and so on is the National Library for Health, www.library.nhs.uk. If you work in the NHS you can go to My Library, then My Update and they will send you a regular email with news and articles related to your field. I also use the web to keep up-to-date with Trust information, relevant charities and associations and client orientated websites such as www.sensoryworld.org. In addition the internet is invaluable for finding photographs for use in accessible information - for example I would go to http://images.google. com/ to find pictures of a laundry basket for a visual timetable. (Just be aware of legal issues see www.ucl.ac.uk/learningtechnology/legal/ copyright/copyright.pdf.) 4. ACTING THE PART MAKES YOU THE PART Rising to the challenge of being a new therapist is never easy. Even before you start your first job, feelings of panic set in how will I actually do the job? And when you do start how do I do this? Ive never done this before how will I know what to do? The answer is that everybody is still learning - and thats whats great about being a speech and language therapist. Having talked to various friends in the same boat and also those in new jobs but different careers its clear that you have to put on your therapy hat and be a speech and language therapist! You may feel like you are pretending, or that everyone will realise that I dont know what Im doing but actually other peoples expectations of you can help. Staff / clients / carers / professionals see you as a therapist they expect you to be the expert and have the knowledge to do your job. And the truth is you do have this knowledge, albeit a growing one. Youve had the specialist training. Now its time to get out there and share it with others. So rise to the expectation - and before you know it, youre really doing the job. 5. EKOS GREENSHEETS Our team uses the East Kent Outcomes System for therapy aims. Each episode of care is planned and written out on a greensheet, a one-page green form with boxes to fill in. For each episode 1-3 overall aims are set. These are then broken down into measurable objectives. Baselines are recorded and then you set out the stages of intervention that you plan to carry out with the client. You plan a time period for the episode and a date to evaluate whether your aims have been met. As a new therapist I find this system essential in defining therapy goals and keeping aims in mind over long episodes of care. I have used similar systems on placement (for example Kate Malcomesss Care Aims, www.careaims.com); whichever one you use, they are a useful aid to recording and planning care. Johnson, M. & Elias, A. (2002) East Kent Outcome System for Speech and Language Therapy. East Kent Coastal Primary Care Trust. 6. SYMBOL PACKAGES In the adults with learning disabilities service we are always creating new and varied types of resources and accessible information for clients. To name but a few: communication passports, chat books, visual timetables, personalised keyrings, accessible appointment letters, accessible reports, information booklets (The Mental Capacity Act, Guide to Benefits) and so on All of this would be nigh on impossible without the aid of our many and varied symbol packages such as Widgit, Communicate: In Print (both www.widgit.com) and Change Picture Bank (www.changepeople.co.uk). 7. ASSISTANTS Where would we be without our three - yes three! - speech and language therapy assistants? Not only do we churn out vast amounts of work for them to create and put our wild ideas into laminated reality, but they have their own caseloads, specialist experience and extensive knowledge of the client group. They deliver training and therapy and one also wears a dual hat as our communication aromatherapy assistant, particularly useful for clients with profound and multiple learning difficulties. See www.rcslt.org/docs/free-pub/standards_ practitioners.pdf for standards for working with assistants. 8. CLINICAL SUPERVISION We have various forms including 1:1 with our manager and group supervision where we discuss caseload queries and swap ideas for therapy or how to deal with complex cases. We also have forensic supervision with a member of the psychology department who has lots of experience in this area. In addition we organise group continuing professional development meetings and take it in turns to research and present particular topics for discussion. Its really useful to have dedicated time for supervision to discuss any problems and share ideas. We are lucky to have a very supportive team so can ask for individual help at any time. (If your workplace supervision is inadequate it could be worth making your own arrangements through an independent provider such as www.intandem.co.uk.) 9. SENSORY ASSESSMENT BOX We have this as a growing resource and its constantly added to as members of the team spot new and exciting things. We use sensory items in both assessment and therapy especially with service users with profound and multiple learning difficulties. A record sheet is used alongside the items to record client responses, whether positive or negative, so that likes / dislikes can be ascertained. It is also useful to assess reactions to visual, auditory and tactile stimuli. Items in the box include bubble wrap, voile material, metallic wrapping paper, bean bags, flashing light balls, vibrating stick, items that make noises and a big parachute. These are also useful for supporting sensory stories. Helpful websites include www.dundee.ac.uk/ pamis/projects/sensory.htm, www.bild.org.uk/storytelling and www.pri-liberator.co.uk. 10. CAFFEINE AND CHOCOLATE DIGESTIVES Essential to any job, and especially one which involves lots of meetings:) A spare packet of biscuits in a drawer can a) liven up a meeting b) motivate people on training c) console a colleague d) keep you sane.