Speech & Language Therapy in Practice, Autumn 2009

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PLUS...winning ways...heres one I made earlier...reviews...in brie...great reader oers...editors choice...and lets Talk Shop

www.speechmag.com

ISSN 1368

Scoping and scalingDysphagia assessment

Walking with DobermannsBrain injury rehabilitation

Talking fatsEvidencing competence

Beep, beep!

Steering the way homeE-stimWhat does this house believe?

Our top resourcesSpecic language impairment

Autumn 2009

MotorNeuroneDiseaseThe cost o care


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Readeroff

ers

Members areaFor a reminder o your user name and

password, email [email protected].

FeedbackThe orum has been replaced by moreinormation about the Critical Friends ormo peer review or the magazine. To getinvolved, see www.speechmag.com/About/Friends.

Win Time or Sounds!Are you looking to develop sound awareness skills such as syllable segmentation and onset andrime in children who need support to acquire phonics knowledge? Black Sheep Press is giving awayTWO copies o Time or Sounds Reception, normally worth 70, to Speech & Language Therapy inPractice readers.

This complete group programme was developed by speech and language therapist Sarah Parkin

as part o a joint project between Stockport LEA and PCT. She says it has been extensively trialledover the past three years and has produced excellent outcomes in childrens literacy skills. The packis aimed at children in Foundation Stage and Key Stage 1 aged rom 37 years. It includes 200 pageso session plans, colour pictures and black and white line drawings and is suitable or use by speechand language therapists, teachers and teaching assistants.

To enter this FREE prize draw, all you have to do is email your name and address with SLTiP Timeor Sounds Oer in the subject line to [email protected] by 25th October 2009. Thewinners will be notied by 1st November.

For more about this and other Black Sheep Press products, see www.blacksheeppress.co.uk.

Win Best Games or Groups!Looking or warmups, ice breakers and quick ideas to make groups un? Then Hinton

House Publishers is oering a set o 8 pocket books FREE to THREE lucky readers.Aimed at young people rom 516 years, each collection o the 50 Best Gamesaddresses a specic area o development. The set comprises 50 Best Games or... Speech& Language Development, Building SelEsteem, Relaxation & Concentration, BrainExercise, Sensory Perception, Groups, Childrens Groups and Indoor Games or Groups.

The books are usually sold as two sets totalling 71.98 but, or your chance to win them all, email your name and address with SLTiP Best Games oer in the subject line to [email protected]. Yourentry must be received by 25th October 2009 and the winners will be notied by 1st November.

Hinton House is a new company owned and run by Sarah Miles, ormerly the Publisher at Speechmark, publishing in the eldso education, special needs, emotional literacy, classroom and behaviour management, literacy, storytelling and drama. For theull range o products and inormation about submitting your ideas or publication, see www.hintonpublishers.com.

Reader Oer WinnersThe company behind Photosymbols 3 was so pleased with the response to its reader oer in our Summer 09 issue that it has decided tochoose three winners across the globe instead o one! The UK winner is Fiona Soutar, or the Republic o Ireland its Sherley Birdthistle andthe international recipient is Louise Frazer in Barbados. Fiona Soutar also struck lucky in the Novelty Warehouses Fidget Bin draw, as didKirsty McLaughlan. Thanks to our sponsors, congratulations to our winners, and good luck with this issues oers!

Autumn09speechmag


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IN FUTURE ISSUES: PLACEMENTS...VOICE...STORYTELLING...TRAINING...ASSESSMENT...BRAIN INJURY...MENTAL HEALTH...WORKINGINDEPENDENTLY

4 ASSESSMENT

Our rationale or inviting comments

on the rating scale was to check we had

included the main eatures that can

be seen during endoscopy and that

the scoring systems were amiliar, userriendly and had clinical relevance.

Kirsty Hydes and Paula Lesliediscuss why a standardised and

reliable rating scale or the useo endoscopy with people withdysphagia is needed and how theyhave kickstarted its developmentwith an evidencebased pilot.

6 EDITORS CHOICE

7 HERES ONE I MADE EARLIER

Alison Robertswith two low cost

therapy suggestions The

communication tree and What on earth..?

11 WINNING WAYS

Collaborators listen and talk, they

discuss and clariy and really do want

to keep going until everyone can at

least be aware o and acknowledge the

positions o others.

Lie coachJo Middlemiss addressesreaders concerns about workplace

conicts.

12 PARTICIPATION

...the map became intrinsically

motivational. This was evidenced by

the many sel-initiated changes in

behaviour that accompanied and

ollowed the actual construction o the

map, including a reduction in drinking,

increased physical exercise, a healthy

eating programme and exploration o

urther study options with the support

o his amily.

Sam Simpson, Emma Gale andAshleigh Denman reect on theimpact the late Dr Mark Ylvisakersideas have had on their practice withpeople with brain injury. In this rsto two articles, Sam and her client PJ

demonstrate why identity mapping iscentral to true rehabilitation.

Autumn09contentsAutumn 2009publication date 31 August

2009ISSN 13682105

Published by:Avril Nicoll,33 Kinnear SquareLaurencekirkAB30 1UL

Tel/ax 01561 377415email:[email protected]

Design & Production:Fiona Reid,Fiona Reid DesignStraitbraes Farm,St. Cyrus, MontroseAngus DD10 0DS

Printing:Manor Creative,7 & 8, Edison RoadEastbourne,

East Sussex BN23 6PT

Editor:Avril Nicoll,Speech and Language

Therapist

Subscriptions andadvertising:

Tel / ax 01561 377415Avril Nicoll 2009Contents o Speech & Lan

guage Therapy in Practice reect the views o the individualauthors and not necessarily theviews o the publisher. Publication o advertisements is not anendorsement o the advertiseror product or service oered.Any contributions may alsoappear on the magazinesinternet site.

Speech & Language Therapyin Practice can be oundon EBSCOhost researchdatabases

16 THIS HOUSE BELIEVES IN E-STIM

There have been no suciently

well designed clinical trials to date

that support this method as a valid

treatment or dysphagia. Indeed, there

is more evidence in the literature thatnds either no eect or adverse eects.

Christine Matthews and PaulaLeslie examine the evidence around

the eectiveness o transcutaneousneuromuscular electrical stimulationin treating people with dysphgia.

19 IN BRIEF

Kirsty Forde joins a local network ornewly qualied therapists and BethBrewster evaluates two therapistassessment clinics or twoyearolds.

20 REVIEWS

Resilience, language disorder,speech science, voice, laryngectomy,velocardioacial syndrome, voiceand speech, assessment, culture,stammering, head and neck.

22 IN-DEPTH REVIEWS

Jois Stanseld considers the 3rdedition o the CASP and BernieBrophy-Arnott appraises the

Signalong Sexual Awareness Pack.

23 HOW I HELP PEOPLE MOVE ON

1 STEERING THE WAY HOMEOur aim was that through acting out

the tasks and the eelings o moving

house, the group would have memories

and experiences that they could relate

back to during and ater the move.

Speech and language therapist SueMartin and drama therapist MagdaPearson draw inspiration rom KeithPark when supporting a group opeople with severe and prooundlearning disabilities to move house.

(2) TALKING FLATS

Moira was not demonising her amily

but recognising that there were some

good times shared. However, or many

reasons, both simple and complex, she

was making an active choice not toreturn there and to move into her own

home and onto the next chapter in her

lie.

Maria Venditozzi ound the TalkingMats ramework ideal or gatheringevidence o the competence o a ladywith learning disabilities to make thedecision about where she should live.

28 LETS TALK SHOP

Five attendees at the 2009 NationalSpeech and Language Therapy Fairchoose their avourite resource.

30 OUR TOP RESOURCESThe childs story allows us to gain

inormation and insight into how

the child is eeling in relation to their

learning and emotional well-being and

to support our clinical decision-making.

We use a number o approaches to

gather inormation social stories,

our diary system, Talking Mats,

communication passport, target sheets,

personal learning plans and child

centred plans.

Sandra McKeen, Toddy Lawson,

Bernadette Bannon and RuthWallace work in Fie with childrenwith specic language impairment.

8 COVER STORY: THE COST OF CAREWith motor neurone disease being such a rapidly progressive disease with

complex symptoms, there is a case or saying that, i practitioners can get itright here, then managing other long term neurological conditions will besimpler.Beverley Hopcutt assesses the potential impact o the Motor NeuroneDisease Year o Care Pathway with Hal Bailey, and brings us uptodatewith other essential resources when working with this client group.

Thanks to Hal and Margaret Bailey or ourcover photo by Karen Wright,www.karenwrightphoto.co.uk


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NEWS

On the busesTherapists looking or ways to improve accessto transport or people with communicationsupport needs can take inspiration rom a bussupervisor in Gateshead.

John Gordon 50 ound himsel unable tohelp when a dea passenger approached himor inormation at Gateshead Interchange lastyear. To make sure this couldnt happen again,he signed up or a 12 week Dea and BlindAwareness course with the local council, ollowed by the Learn to Sign NVQ level 1.

As well as enrolling or the next level, Johnhas encouraged 11 o his colleagues to go on

the course, and has become a volunteer withGateshead Dea Club. He has also worked

John Gordon helps a dea passenger

A can do attitudeBroadcaster Richard Hammond, who sustaineda serious brain injury in an accident while lming or BBCs Top Gear in 2006, has opened a7 million residential centre or children romacross the UK with acquired brain injuries.

The Childrens Trust rehabilitation centre inTadworth, Surrey has been unded entirely byvoluntary donations. Chie Executive AndrewRoss said, Our challenge was to design a acilityor the nursing and care o children with the mostcomplex physical, psychological and social needswithout losing sight o our main purpose: to givethe children a road back to normality, marryingexpert care with a can do attitude to disability.

Meanwhile another charity, The National Centre

or Young People with Epilepsy, is also preparing toopen the doors o a new acility in the Autumn.

The Neville Childhood Epilepsy Centre replaces a 1960s building which is no longer tor purpose. It will be a base or the international study and treatment o epilepsy andother neurological conditions in under18sas well as oering a wide range o diagnostic,assessment and rehabilitation services including speech and language therapy.www.thechildrenstrust.org.uk; www.ncype.org.uk

Vice-Presidento The Childrens Trust, RichardHammond, with Calvin, who is on a brain injuryrehabilitation programme.

AuKids in bloomA regional notorprot parenting magazineaimed at amilies with young children on theautism spectrum is celebrating its rst birthdaywith a drive to go national.

AuKids began as a joint venture between parent Debby Elley, whose ve yearold twin sonshave autism, and speech and language thera

pist Tori Houghton. The quarterly publication isdistributed ree to amilies in Greater Manchester and Stockport. Debby says it is popular as,we dont talk about unproven cures. Our subject matter is downtoearth, practical and uninormation and advice.

From 2010 there will be a small subscriptioncharge or home delivery to help with eortsto expand. To date the magazine has survivedthrough voluntary eort, sponsorship and advertising. Tori says, Every issue we have to sitdown and think where the money is comingrom. We desperately need sponsors to help uscontinue with this magazine, which we know

is so needed. Any contribution, however big orsmall, is welcomed.Download AuKids magazine at www.aukids.co.uk

Fair Care orParkinsonsThe Parkinsons Disease Society is campaigningor Fair Care or Parkinsons ollowing an All Party Parliamentary Group APPG or ParkinsonsDisease report documenting severe inequalities in access to services, including speech and

language therapy.Dr Nick Miller rom the University o Newcastle

was among over 350 people who gave evidenceto the enquiry. His research identied that veryew speech and language therapists have anyinvolvement with people with Parkinsons disease and, even in major centres, the number opeople with Parkinsons disease on speech andlanguage therapists caseloads is tiny comparedto the number that would be expected. He alsohighlighted gaps in early intervention, nursinghomes and palliative care and called or a bodyo specialist speech and language therapists tobe trained who are totally cognisant o the lat

est evidence basis and are able to deliver it in anexpert ashion.www.parkinsons.org.uk/PDF/APPG_Report_Please_Mind_the_Gap.pdwww.parkinsons.org.uk/aircare

closely with the Nexus Bridge Card scheme,which helps anyone with special communication needs travel independently on public

transport by alerting drivers.www.gateshead.gov.uk

Faithul companionsSeven year old Sam Daly, who has muscular dystrophy,and his assistance dog, Josie, are celebrating ater completing their training period with a successul compatibility assessment.

Josie is one o our dogs whose training to work withchildren by the charity Dogs or the Disabled was made

possible by grants rom the Kennel Club CharitableTrust. An 18 month old yellow Labrador Retriever, Josie can help wheelchair user Samwith everyday tasks such as removing socks and undoing zips, opening doors, and taking notes between Sam and his parents.

Sams mum Sarah said, Josie has completely changed Sams lie. For the rst time ever, hecan have his own independence. Sam can now play on his own in the garden thanks to Josie,something we would never had dreamed he would do, beore she came along. We cant believethe change already in Sam.

Dogs or the Disabled has around 200 assistance dogs working with disabled clients in England and Wales.www.dogsorthedisabled.org/; www.justgiving.com/kennelclub/.

Delaying dementiaThe Alzheimers Society and The StrokeAssociation have joined orces to undresearch to try to prevent or delay dementia developing in people who havehad a stroke.

The charities say that thirty per cent ostroke survivors develop dementia. Overeight years, the new PODCAST study willconsider whether intensive treatmentto lower blood pressure and cholesterolmakes a dierence.www.alzheimers.org.uk; www.stroke.org.uk


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Stroke MattersThe UK Stroke Forum in December 2008 saw the launch o Stroke Matters,The Stroke Associations ree quarterly e-publication or proessionals inhealth and social care.

Editor Joanne Murphy says it covers interesting and accurate news onstroke issues, careully selected by an expert multidisciplinary editorialboard comprising o leading stroke specialists. The latest issue includesupdates on stem cells in stroke, childhood stroke, the use o telemedicine

and skills training or stroke care, along with research updates across thestroke care pathway. Subscribers can also access archived issues.Joanne is encouraging speech and language therapists both to sub

scribe to the service and contribute relevant articles.You can subscribe or ree by completing a orm at www.stroke.org.uk/strokematters.

Protect your titleThe Health Proessions Council is urging all speech and language thera-pists to sign and return their renewal declaration with payment by thedeadline o 30th September.

To continue to practise using the title speech and language therapistor speech therapist all members o the proession must renew their

registration every two years. The annual renewal ee is 76. Registrantsmust sign and return their declaration even i they pay by direct debit.

The renewal orm conrms that the registrant is undertaking continu-ing proessional development.Straightorward guidance on the Councils requirements is available in anonline DVD at www.hpc-uk.tv/fash.html. Further inormation is also at www.hpc-uk.org/registrants/renew/.

Recognising athersA national survey o athers who have children with learning disabilitieshas ound that people working in health and social care could do moreto acknowledge and include athers.

Good practice guidance in the report rom the Foundation or Peoplewith Learning Disabilities stresses the importance o giving athers theopportunity to attend meetings and contribute towards decision-making.Proessionals can help by planning meetings in advance at convenienttimes, possibly outwith normal working hours, and giving sufcient inormation in advance or parents to plan whether one or both will attend.I athers cannot attend a meeting, the guidance recommends they arekept inormed via telephone or email.

It concludes by noting that or cultural reasons some athers maynot be comortable discussing sensitive topics with emale memberso sta.www.learningdisabilities.org.uk/publications/?entryid5=32902

Mobility rightsUK charity Contact a Family and the Every Disabled Child Matters campaign have welcomed a court ruling to grant a judicial review o mobilitybenets or disabled children under the age o three.

Stephen and Wendy Meek, whose son Justin cant walk and is oxygendependent, argued that the nonpayment o mobility benets contravened their sons human rights. The Court o Session ruled that the Department o Work and Pensions may indeed be breaching Justins rightsunder European law.

The charity says some disabled children need to travel with bulky equip-ment while others need to be close to a car to enable prompt access tomedical attention. Current rules mean that amilies cannot claim highrate mobility Disability Living Allowance until a child is three. Contact aFamily estimates that the review could benet up to 10,000 amilies in

the UK at any one time.www.ca.org.uk

NEWS & COMMENT

SPEECH & LANGUAGE THERAPY IN PRACTICE AUTUMN 2009 3

Comment:

Reasonwith passion

One o the best things about being in a book groupis reading things I wouldnt necessarily choose mysel and nding them surprisingly resonant. Touching Distance by Rebecca Abrams is a ctionalisedaccount o a true story. Set in 1790, it ollows ayoung doctor who is committed to using reason todetermine what we now call evidence based practice, even in the ace o powerul vested interestsand other peoples ear o change.

...there are persuasive arguments on both sides...You must weigh the existing evidence, then gather new evidence. Onlywhen you have sucient acts in ront o you, can you make a properassessment. Above all you must never orget...Authority without acts isnothing but opinion and opinion without authority is worth less than a

barleycorn.Abrams, 2008, p.109Dr Alexander Gordons methodical and logical approach would

certainly nd avour with Paula Leslie and her collaboratorsChristine Matthews p.16 and Kirsty Hydes p.4. I suspect hemay well have beneted rom Jo Middlemisss thoughts p.11on resolving workplace conict and would no doubt have welcomed the positive response rom the authorities that MariaVenditozzi p.26 encountered when she presented evidence oa clients wishes using Talking Mats.

Weve come a long way rom healthcare being unded privately andthrough charitable donations as it was in 1790 but arguments aboutthe best way o unding the health service are unlikely to go away. Withits Year o Care Pathway Beverley Hopcutt with Hal Bailey, p.8, however, the Motor Neurone Disease Association has opened up discussionabout the true cost o care and how improving unding mechanismscan make that care more eective. Sadly, the groundbreaking story telling work by Sue Martin and Magda Pearson p.23 is hampered bydifculties accessing unding or drama therapy.

Dr Gordon had to retire through ill health and died aged 46,with his pioneering work on puerperal ever only properly recognised ater his death. In contrast another pioneer, the late Dr MarkYlvisaker, could have been in no doubt about the value o his contribution to brain injury rehabilitation. By highlighting the impacthis work has had on their practice, Sam Simpson, Emma Gale andAshleigh Denman p.12 hope that readers will consider how itcan be applied to other client groups.

Alec Gordon thought that reason was his one and only driver.It took some time or him to appreciate that passion or his workplayed as big a part. The blend o reason with passion is evident

in the Fie specic language impairment teams choice o topresources p.30 and indeed, as always, throughout this issue oSpeech & Language Therapy in Practice.

Would he, Alexander Gordon o Miltown o Drum, have done allthat he has without passion, without aith in something ar beyondmere provable acts?...Reason is not everything. Reason is only a parto everything. Without passion, reason is as cold and dead as the reat his eet.Abrams, 2008, p.285

Reerence

Abrams, R. 2008 Touching Distance. London: Pan Macmillan.


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and larynx beore and ater the swallow butnot the oesophagus or the period o whiteout the moment o swallow Langmore et al.,

1988. A breoptic camera is passed alongthe nose, beyond the velopharyngeal portand into the hypopharynx with a view o thetongue base and valleculae. Clinicians canassess anatomical and physiological decitso the sot palate, pharynx and larynx. Thereis no radiation exposure and the patient canbe examined at bedside or in the outpatientclinic.

Insufcient inormationCurrently there are no standardised descriptors or anatomical and physiological eaturesobserved during endoscopic swallow studiesand there is insufcient inormation on howreliable clinicians are at rating swallowing behaviours when using endoscopy. Interraterreliability in endoscopic swallow studies is reported to have acceptable levels 83 per cent

agreement or observing oral/pharyngealtransit, laryngeal elevation, laryngeal closureat the airway entrance, and epiglottic contactwith the pharyngeal wall Logemann et al.,1999. Colodny 2002 ocused on interrateragreement but not validity in endoscopy using the PenetrationAspiration Scale Rosenbek et al., 1996, and the results showed anacceptable 6575 per cent. This study onlylooked at agreement on the degree o laryngeal penetration and thereore results cannot be generalised to other swallow eatures.The use o the PenetrationAspiration Scale isquestionable because the landmarks used toscore are not visible in real time when usingendoscopy and timing o events sometimes

ASSESSMENT

SPEECH & LANGUAGE THERAPY IN PRACTICE AUTUMN 20094

has to be inerred. Recent work has shownthat speech and language therapists do judgeimages o the same swallow dierently de

pending on whether it is rom endoscopy orvideouoroscopy Kelly et al., 2006.

Limited research on reliability during swallowendoscopy is partly because no rating ormwith published reliability and validity exists tomeasure rater agreement or anatomical andphysiological swallow eatures. So, havingbeen granted avourable ethical opinion bythe Local Research Ethics Committee or thisproject, we started the process o designingan endoscopy rating scale.

We searched or existing scoring proceduresused with videouoroscopy and endoscopyusing terms: dysphagia, FibreopticEndoscopic Examination o Swallowing,videouoroscopy, rating scales, and reliability.Databases included: AMED, CINAHL, Medline,Pubmed, and The Cochrane Library. Weincluded videouoroscopy to examine whicheatures are measured, how they are scoredand i a similar scoring method could be usedwith endoscopy.

We designed an evidence based rating ormusing published reports o what could be seenduring endoscopic swallow studies whichmay not equate to what clinicians can reliablyrate. Features included anatomical ratings othe pharynx and larynx, physiological eventsin the absence o a bolus, and physiological

swallow eatures in the presence o a bolus.Features such as velopharyngeal motion, vocal cord closure during a tight breath hold,ratings o pharyngeal secretions, evidence opremature spillage in pharynx, penetration/aspiration and residue were included Langmore et al., 1988; Rosenbek et al., 1996; Bastian, 1991; Murray et al., 1996; Dua et al., 1997;Langmore & McCulloch, 1997; Murray, 1999;Hiss & Postma, 2003.

Ordinal scales normal/mild/moderate/severe and nominal scales present/absentwere used. Ordinal scales had descriptors sothat raters could decide on eature severity.Nominal scales were used to rate movemento the velum in speech and swallowing, vocal

Scoping and scalingSpeech and language therapists use endoscopy

to assess the needs o people with dysphagia butclinical eectiveness is hampered by the lack o astandardised and reliable rating scale. Kirsty Hydesand Paula Leslie discuss why such a scale is neededand how they have kickstarted its developmentwith an evidencebased pilot.

W

hile the endoscopy swallow assessment is within the scope opractice or speech and language

therapists with expertise andspecialist training in dysphagia Kelly et al.,2007, the proession lacks an evidence basedendoscopy rating scale. Kirstys research studyas part o an MPhil degree Newcastle University was designed to look at interrater reliability o anatomical and swallowing eaturesobserved during endoscopy. The rst part othe study involved developing a rating ormor endoscopic swallow studies, based onclinical practice and robust evidence. Thisarticle ocuses on why the endoscopic ratingscale was needed and how we created it. Thescale is available at http://www.speechmag.com/Members/Extras.

Swallowing impairment aects eating anddrinking saety by increasing the risk o aspiration: material entering the airway belowthe level o the vocal olds. Complications associated with dysphagia include pneumonia,malnutrition, dehydration, longer hospitalstay, and increased health service dependency Smithard et al., 1996. Clinical practicerequires efcient and accurate assessmentsto plan management. The main instrumental assessment tools are videouoroscopyand endoscopy Fibreoptic Examination oSwallowing: FEES. Literature describes theendoscopic procedure and which eatures o

anatomy and physiology should be assessed,but this is based on limited robust evidenceand oten uses subjective descriptors. Anyevidence borrowed rom videouoroscopicassessment should be used with caution because the structures and eatures seen dierbetween the two procedures.

Videouoroscopy uses radiographic imaging to track ood/liquid rom the oral cavity,through the pharynx and into the oesophagus. Patients must be physically stable andable to be transported to the Xray suite. Patients are exposed to radiation although thiscan be kept to a minimum ZammitMaempelet al., 2007.

Endoscopy gives a clear view o the pharynx

READ THIS IF YOURARE INTERESTED INDEVELOPING

A CLINICALLYUSEFULASSESSMENTTOOLEVIDENCEBASEDOBJECTIVEMEASURESINTERRATERRELIABILITY

Endoscopy givesa clear view o thepharynx and larynxbeore and aterthe swallow

Kirsty and Paula


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ASSESSMENT


old adduction during phonation, epiglottic retroexion, laryngeal elevation, and nasoregurgitation. These types o scoring werebased on endoscopy Rosenbek et al., 1996;Langmore & McCulloch, 1997; Murray, 1999and videouoroscopy research McCulloch etal., 2001. Clinical signicance may be easierto identiy with an ordinal scale Brunier &Graydon, 1996.

We created and discussed several versionso the scale with both academic NewcastleUniversity and clinical tutors working in theeld o dysphagia and voice and, ater twomonths, a pilot orm was ready.

Feedback rom expertsAs research clinicians developing skills in thearea o endoscopy, we deemed it appropriate to seek eedback rom experts in the eldo dysphagia. We invited two internationalexperts in dysphagia to comment individually on the pilot scale. Both are trained in endoscopy, and one also provides training and

publishes work in this area. We asked themto advise on improvements regarding content o eatures, scoring, length, presentation and clinical relevance. Our rationale orinviting comments on the rating scale was tocheck we had included the main eatures thatcan be seen during endoscopy and that thescoring systems were amiliar, user riendlyand had clinical relevance. In addition, thisconsultation process helped to reduce author bias o scale content. Both experts werehappy to make suggestions within an agreedtime rame and their comments resulted in anumber o improvements:

Anatomy/physiology eatures with andwithout a bolus trial were divided. Overallswallow rating was moved to the start othe bolus trial section so clinicians wouldreport on the whole swallow beore ratingspecic eatures in detail.Ordinal scales were kept and one expertrecommended that ordinal scales shouldcontain 7 points to improve reliability.Severity descriptors relating to the ordinalscales were removed except or thevalidated severity scales or tight breathhold, secretion severity and penetration/aspiration. We decided to remove semanticdescriptors such as swallow requency

where a normal rating was described asswallowing requently in response toa build up o saliva/residue and mildmoderate impairment was labelled as tracepooling o secretions/residue with delayedswallow response because they set uparticial guidelines that are not uniormlyagreed or evidence based.Velar closure during speech was removedbecause it does not relate to movementduring swallowing. Velar closure duringthe swallow was kept, changed tovelopharyngeal closure on a dry swallowand scored on a 7 point ordinal scale orange o closure as opposed to strength omovement Murray, 1999.

1.

2.

3.

4.

The ratings o pharyngeal and laryngealanatomy were altered to a simplied ratingo normal versus abnormal anatomy. Thiswas expanded to comment on presenceor absence o a number o normal andabnormal anatomical eatures.Vocal old adduction during phonation wasremoved because this is related to speechand not directly to swallowing. Assessment

o vocal old movement during tight breathhold was kept to view vocal old mobilityand the potential or adduction.Seven point ordinal scales were used torate the overall swallow, inerred baseo tongue movement, timing o swallowinitiation, pooling and residue and swallowefciency. Checklists o eatures relating tooropharyngeal transit and the location oresidue were added.One expert requested that an impressiono laryngeal elevation should orm parto the assessment. Epiglottic unctionwas included in the checklist o eaturesassociated with laryngeal excursion.

The PenetrationAspiration Scale Rosenbeket al., 1996 was retained, together witha question on when penetration/aspirationoccurred.

As would be expected in any collaborativeexercise, the experts advice diered at times.One suggested that a detailed assessment olateral pharyngeal wall movement and pharyngeal response to touch should be part othe assessment orm. However, our other expert suggested removing the pharyngeal sensation rating because it is a crude measure osensory impairment in the phar ynx. We decided to retain a measure o sensory awarenessvia the rating o pharyngeal secretions usingthe Secretion Severity Scale Murray et al.,

1996 and a question on rating the presence/absence o secretions within and around thepharynx and larynx, and the response or lacko response to secretions.

One o the experts advised looking at baseo tongue movement at rest, on post vocalic /l/, and on dry swallow. While we acknowledgethat examinations using endoscopy mayinclude a more indepth assessment o themovement o base o tongue, the purpose othis assessment tool was to identiya which eatures clinicians could see on FEES

andb how reliably they could rate visible eatures

as a group.As a result, we kept in a general measure o

5.

6.

7.

8.

9.

tongue base retraction together with eatureswhich might indicate a problem with thismovement, but did not include analysis ingreater depth.

Ater we had made the changes to the pilotorm, we returned the revised version to oneexpert or urther comments i needed.

Clinically useulWe ound the experts comments relating tothe scoring and layout useul in providingstructure to the pilot version o the scale.Questions relating to the inerence o baseo tongue retraction and laryngeal elevationwere added since both are vital componentso the pharyngeal stage o swallowing. Scoring eature severity is no longer qualiedwith semantic descriptors, which are otenhighly subjective and not validated in the literature. Clinicians instead are asked to makea severity judgment on a eature, such as theamount o residue, and then to qualiy thisby answering a checklist o sub eatures re

lating to the overall eature, or example thelocation o residue. This type o scoring isclinically more useul because people qualiywhythey rated a particular eature as normalor abnormal.

We didnt include all eatures recommended by the experts because the purpose o thisorm was to produce an initial clinical toolrather than to rate an entire endoscopic swallow assessment. Other researchers Rosenbeket al., 1996 have already examined which eatures are difcult to rate in videouoroscopy.As part o her MPhil research study, Kirsty hasgone on to use the endoscopy rating scale to

examine interrater reliability on anatomicaland physiological eatures o swallowing, andthis will be written up or publication at a laterdate.

It is important to keep research ocusedand doable, so including questions oncompensatory strategies and interventiontechniques was beyond the remit o Kirstysstudy. Examining interrater reliabilityon decisions made ollowing endoscopyassessment should orm part o a ollowup.Also to be assessed in urther work is the useo the 7 point rating scale. Although Likertscales have good psychometric propertiesBrunier & Graydon, 1996, this may be too

detailed or clinicians to use reliably.We are limited in our clinical and research

assessment and intervention by the lacko published, validated scales and scoringsystems or endoscopic swallow studies. Weneed to ocus uture research on whether theeatures identied in this preliminary workcan be viewed consistently during endoscopy.Based on results o this type o ollowupstudy we will be in a better position to knowwhich eatures should be incorporated on anendoscopic swallow assessment rating scaleand how this should be applied in clinic. In thelonger term we want to use this preliminarywork to design research to develop astandardised tool.

As would beexpected in anycollaborativeexercise, the expertsadvice diered at

times.


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ReerencesBastian, R. 1991 Videoendoscopic evaluationo patients with dysphagia: An adjunct to themodied barium swallow, OtolaryngologyHead and Neck Surgery, 104, pp.339350.Brunier, G. & Graydon, J. 1996 A comparison otwo methods o measuring atigue in patientson chronic haemodialysis: visual analogue versus Likert scale, International Journal o Nursing, 33,pp.338348.Colodny, N. 2002 Interjudge and intrajudge reliabilities in Fibreoptic Endoscopic Evaluation oSwallowing FEES using the PenetrationAspiration Scale: A replication study, Dysphagia, 174,

pp.308315.Dua, K., Ren, J., Bardan, E., Xie, P. & Shaker, R. 1997 Coordination o deglutitive unction andpharyngeal transit during normal eating, Gastroenterology, 112, pp.7383.Hiss, S. & Postma, G. 2003 Fibreoptic Endoscopic Evaluation o Swallowing, Laryngoscope, 113,pp.13861393.Kelly, A.M., Leslie, P., Beale, T., Payten, C. & Drinnan, M.J. 2006 Fibreoptic endoscopic evaluationo swallowing and videouoroscopy: does examination type inuence perception o pharyngealseverity? Clinical Otolaryngology, 315, pp.425432.Kelly A.M., Hydes K., McLaughlin C. & Wallace S. 2007 Fibreoptic Endoscopic Evaluation oSwallowing FEES: The role o speech and language therapy. RCSLT Policy Statement 2007. London:Royal College o Speech & Language Therapists.Langmore, S. & McCulloch, T. 1997 Examination o the pharynx and larynx and endoscopicexamination o pharyngeal swallowing, in Perlman, A. & SchulzeDelrieu, K. ed. Deglutition andIts Disorders. San Diego: Singular Publishing, pp.201226.Langmore, S., Schatz, K. & Olsen, N. 1988 Fibreoptic Endoscopic Examination o Swallowing

Saety: A new procedure, Dysphagia, 2, pp.216219.Logemann, J., Rademaker, A., Pauloski, B., Ohmae, Y. & Kahrilas, P. 1999 Interobserver agreementon normal swallowing physiology as viewed by videoendoscopy, Folia Phoniatrica et Logopaedica,51, pp.9198.McCullough, G., Wertz, J., Rosenbek, J., Mills, R., Webb, W. & Ross, K. 2001 Inter and Intrajudgereliability or videouoroscopy swallowing evaluation measures, Dysphagia, 16, pp.110118.Murray, J. 1999 Manual o Dysphagia Assessment in Adults. San Diego: Singular Publishing.Murray, J., Langmore, S., Ginsberg, S. & Dostie, A. 1996 The signicance o accumulatedoropharyngeal secretions and swallowing requency in predicting aspiration, Dysphagia, 11,pp.99103.Rosenbek, J., Robbins, J., Roecker, E., Coyle, J. & Wood, J. 1996 A penetrationaspiration scale,Dysphagia, 11, pp.9398.Smithard, D., ONeill, P., Park, C., Morris, J., Wyatt, R., Engand, R. & Martin, D. 1996 Complicationsand outcome ater acute stroke: Does dysphagia matter?, Stroke, 277, pp.12001204.ZammitMaempel, I., Chapple, C.L. & Leslie, P. 2007 Radiation Dose in Videouoroscopic Studies,Dysphagia, 221, pp.1315.

ASSESSMENT


Our aim to devise a rating orm based onclinical practice and supported by robustevidence was achieved. The expert peerreview increased the clinical validity o thetool, and both speech and language therapistswere happy to do this as part o their expertrole. Clinicians should thereore consider theeatures reported in this rating scale whenassessing swallowing.

Kirsty Hydes is a consultant speech and language therapist at St Johns Hospital, Livingston, email [email protected] Leslie is Associate Proessor, Communication Science and Disorders at the Universityo Pittsburgh, USA, email [email protected] is also a specialist advisor in swallowingdisorders or the Royal College o Speech &Language Therapists. The endoscopic ratingscale described is available at http://www.speechmag.com/Members/Extras.

REFLECTIONS

DO I CONSIDER ASKING FORPEER AND EXPERT OPINION

TO MAKE MY INFORMALASSESSMENTS MOREROBUST?DO I KEEP CLINICALEXPLORATION FOCUSED ANDACHIEVABLE?DO I EXERCISE CAUTIONWHEN APPLYING EVIDENCEFROM ONE TOOL TO

ANOTHER?

Do you wish to comment on the impactthis article has had on you? Please see theinormation about Speech & LanguageTherapy in Practices Critical Friends atwww.speechmag.com/About/Friends

AcknowledgementsOur sincere appreciation to the expert clinicians who advised on this project and toKirstys thesis tutors Nick Miller and Paul Carding. We also wish to thank Dr James L. Coyleor advice on the manuscript.

EditorschoiceSo many Journals, so little time!EditorAvril Nicollgives a briefavour o articles that have gother thinking.

Our interest in Attachment Theory is increas-ing but, in Making Space or Positive Constructions o the MotherChild Relationship,Natalia Cecelia Charles and Rachel C. Bermandraw attention to its limitations. Critical oresearch methods that accentuate stressand difculties, they use qualitative oral history interviews o mothers o children withautism. Their ndings suggest we can andshould oster resilience in such mothers and

their relationship with their child. Answersto questions such as What aspects o yourrelationship with your child do you enjoythe most? help identiy strategies that, overtime, will support and strengthen it. Hopeul,thoughtprovoking and moving.(Journal o the Association or Research onMothering (2009) 11(1), pp.180-198)

Do people who stammer have impoverishedlanguage? Do they use less language to mini-mise stammering? In The efect o stutteringon communication: A preliminary investiga-tion, Elizabeth Spencer, Ann Packman, MarkOnslow and Alison Ferguson tackle these

questions through Systemic Functional Lin-guistics, which analyses how people commu-nicate with language and the meanings theyconvey. It is possible that the extent to whichmodality a lexicogrammatical resource thatis used to indicate opportunities or verbalengagement is employed will emerge as an

area or therapy and outcome measurementin adults who stammer.(Clinical Linguistics & Phonetics (2009) 23(7),pp.473-488)

I am coming to appreciate how systematic re-views ocus attention on evidence, its strength,the gaps, and how research procedures can

be improved. Eectiveness o Early Phonological Awareness Interventions or Studentswith Speech or Language Impairments byStephanie Al Otaiba, Cynthia S. Puranik, Robyn A. Ziolkowski and Tricia M. Montgomerydetails 18 studies. A stand out recommendation or me is collaborative early interventionor children with speech impairment wherespeech-language pathologists deliver speechproduction and phonological training that islinked to explicit early literacy phonologicalawareness training provided by a classroomteacher in a small group setting.(The Journal o Special Education (2009) 43(2),

pp.107-128)


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SLTP

Heres one I made earlier...

What on earth?A handy addition to yourmaterials or developinglateral thinking skills. Thegame is suitable or a groupo 4-5.

MATERIALSStrong preerably abricbag size depends on yourchoice o contents

Funny objects this is themain challenge in preparing or the game, in thatideally you will provide objects which noone else willhave seen beore. You maynd, as I did, that there areall sorts o peculiar itemsoten Aunties Christmaspresents! in your kitchendrawer such as honeyscoops, icelolly moulds,parts o coeemakers. Atool chest may also yieldsome weird things. My love

ly riend and assistant Julia,a parttime upholsterer whoalso used to own a ock osheep, provided some itemswhose original uses I oundimpossible to guess! Evenbroken items but not sharpor otherwise hazardous willbe ne.

IN PRACTICEIn turns, each group memberpicks one item rom the bag.Spend some time examining

the item, and then describeone or more uses or it. Encourage miming to clariy themeaning.

This game is good un, andis comortable or everyone,as there are no right answers.Oten it can be hilarious too.

Alison Roberts with two more low cost, exible and untherapy suggestions or groups.

MATERIALSA piece o board A2 size is about right. Fibreboard is ideal as you can stick pins into it.Its best to use it the portrait way round.Pale blue abric to cover the whole board.Old polycotton sheeting is ne or this.Beige abric to cover the lower third o theboard representing the area under theground where roots orm.Thin strip o greenish abric to orm a grasslevel.Roughtextured brown abric we used hessian with success as it is textured enough to

resemble tree bark and roots, yet lightweightenough to stay stuck on the backing.Glue PVA is good as it doesnt show throughthe abric.Leagreen paper several shades o greenwould be great.Earthybrown paper.Pens, scissors, and pins.

BRAWNStick the blue abric on the board to cover itcompletely and add the beige across the bottom third, orming the earth.

Draw your tree on the textured brown abric

and cut it out. Its a good idea to make it a manybranched variety so that you will have lots oroom or lea and clod labels. Dont worry iyou cant cut out the root part at the same time,you can cover the join with grass anyway. Stickyour tree on, and stick the grass across wherethe roots meet the trunk, and the earth meetsthe sky. Write the word COMMUNICATION onor alongside the trunk. Now you have the basicorm to which your clients can attach labels.

IN PRACTICE Completing the boardIt is important that you discuss with your clientsthe reasons or making the board, and I haveound that it is best to begin with the subject o

the benets o being able to communicate. Theclients will tell you why it is important, but youshould end up with a list including the ollowing:chatting to people; making riends; using thephone; making appointments; asking or thingsin shops; telling people what you need; makingjokes; having discussions; being part o a group;interview skills; getting a girl / boy riend; keeping in touch with old acquaintances.

Write down all the suggestions as they aregiven, and then give everyone in the groupsome green paper and scissors to cut out leavesto stick on the tree. The tendency is or people to

cut leaves that are too small to write on, so suggest to them that they write rst, then cut outand pin on the tree.

Now you need to tackle the roots o the treein a similar way, rst discussing the prerequisites or good communication and making a list,this time including skills such as listening; bodylanguage; speech clarity; eye contact; using thepersons name; greetings and arewells; turn taking; being optimistic; staying on, and shitingthe subject; having a ew topics ready; prioritising and organising.

It is likely that several o these areas will be unamiliar to your clients, especially those that are

not a problem to them, so you will need to givean outline description although you are not actually teaching these skills at this stage.

Again make the suggestions into labels andpin them to the tree, this time using clodshapes,at the roots.

IN PRACTICE - DiscussionAsk everyone how they eel about the tree, andwhich bits apply to them. Discuss how real treesuse their roots to draw nourishment rom theearth, and can thereore put out shoots. Try tomake the point really clearly that i they workat the prerequisite skills they will be able toreap the benets.

The communication treeThis has been a really useul collage item to have on the wall o the clinic. It helps with motiva-tion and understanding the interactive process. It is useul at the early stages o a social lan-guage group, where the clients are beginning to be aware o the skills they could improve inorder to become better communicators, and is also a handy end-o-course recap.You are aiming to create an outline image o a tree, with roots and branches, to which the clientscan attach lea-shaped labels describing the ways in which communication benets us, andclod-o-earth shaped labels stating prerequisites or achieving good communication.You will need to have constructed the base beore your clients complete it. It is worthmaking the basic ramework sturdily, because you can then use it again and again. Alter-natively, you could make it out o paper as a quick illustrative exercise.

It may take the group more than one session to complete the tree.


HERES ONE I MADE EARLIER


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CARE PATHWAYS


recently, in motor neurone disease by theMND Association in collaboration with LeedsPCT and Leeds Adult Social Care. The year ocare pathway tool outlines the health andsocial care services that an individual withmotor neurone disease will need to access

dependent on the symptoms they developand how these progress. The services aredescribed or costing purposes in terms o statime, equipment and other consumables suchas medication. Having assessed current needand produced a care plan, an experiencedpractitioner should be able to predict likelydisease progression. Using the tool, they canthen create an anticipatory care plan withcostings or the year ahead.

ApplicationsFor speech and language therapists the Motor

Neurone Disease Year o Care Pathway has anumber o applications. Firstly it outlines all othe multidisciplinary inputs available or symptom management. This helps practitioners tounderstand others roles and contributions,and to notiy and make timely reerrals to therelevant services as new difculties developregardless o whether or not they are a designated keyworker or care coordinator.

The pathway also describes the multiacetedspeech and language therapy role, withour involvement in the management ocommunication, dysphagia and sialorrheaexcess salivation. It can also help with the

prediction o symptom progression and whatto expect in the uture, so the proessional is

Eective symptom management in Motor Neurone Disease is challenging dueto the rapid progression and numbero problems people with the disease

can present with over a short space o time. Itis essential or speech and language therapists

to work as part o a multidisciplinary team toensure

a holistic approach to managementaccess to the right proessional or advice,support and treatment at the right time.While the ocus o this article is on a new

Year o Care Pathway, this is just one o manyuseul resources now available to support thequality o lie o people with motor neuronedisease gure 1.

In its quality requirements, the NationalService Framework or Long Term Conditionsreinorces the consensus that multidisciplinarycare is the right approach. However, in the

world o commissioning, costs o serviceprovision are coming under closer scrutiny.The current system in England o payment byresults ocuses on payment or procedures oroutpatient attendance. It does not cover theongoing health and social care costs o peoplewith long term conditions, whose treatmentdoes not t neatly into an episode o care andwhere best practice is or ongoing contactwith services. With motor neurone diseasebeing such a rapidly progressive disease withcomplex symptoms, there is a case or sayingthat, i practitioners can get it right here,then managing other long term neurologicalconditions will be simpler.

Ideally, commissioners GP, PrimaryCare Trust, social care need to ensurethat a comprehensive package o care iscommissioned over a period o time. Thismeans current and anticipated healthcareneeds are planned and budgeted or socare can be delivered in a timely manner asneeds arise without having to constantly reerback to the commissioner or approval orunding. In uture, these costings could beused to support the provision o a personalhealth budget to be held by the client, asdirect payments and individual budgets orpurchasing social care are currently.

The concept o a year o a care wasoriginally piloted in diabetes and, more

encouraged to plan ahead and raise issueswith the person with motor neurone diseasein a timely manner. This ensures that servicesand equipment are in place in good time orwhen they will be needed. It means too thatsensitive issues such as advance directives

to reuse treatment such as gastrostomyinsertion can be discussed at a time when theclient is still readily able to communicate andmake such decisions gure 1, no.10. Speechand language therapy managers might alsond the tool useul or benchmarking theirlocal service costs.

The Year o Care Pathway tool can act as analert or symptoms which portend the needor other involvement. This might includeonset o respiratory problems requiringnoninvasive ventilation. There is a useulchecklist rom the MND Association outliningsymptoms o respiratory ailure, indicating

possible need or noninvasive ventilationand or cough assist gure 1, no.2 due toweak cough and secretion retention.

While the tool highlights the importanceo multidisciplinary team input, includingmultidisciplinary motor neurone diseaseclinics, it also demonstrates the high costso such care. It is unlikely that an individualwould need every health intervention inone year but, i this were the case, it wouldcost about 198,459 based on the year ocare or an individual with advanced disease,with an additional 82,900 needed to undequipment.

So how much does a year o speech and

language therapy input come to?

a) CommunicationMany people present with bulbar motorneurone disease which is requently misdiagnosed, oten as a stroke. It is only as symptoms progress despite dysarthria therapy thata neurological opinion is sought and diagnosis conrmed. Only postdiagnosis speechand language therapy intervention is included but, at 39 per monthly session equatingto 468 per year, it could be a challenge tomeet all communication needs including thetraining o the individual and their key com

munication partners to use communicationaids. However, the suggested costs o 8,200

The cost o careBeverley Hopcutt, with the help oHal Bailey, considers how

the Motor Neurone Disease Year o Care Pathway will helpcommissioners ensure interventions will be in place whenneeded so that the multidisciplinary team can spend moretime with clients and plan to manage symptoms eectively.

READ THIS IF YOUARE INTERESTED INLONG TERM

CONDITIONSA MULTI-DISCIPLINARY

APPROACHINFLUENCINGCOMMISSIONERS

Gwen

the proessional

is encouraged toplan ahead andraise issues withthe person withmotor neuronedisease in a timelymanner


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CARE PATHWAYS


Figure 1 Motor neurone disease resources

1. Motor Neurone Disease Year o Care Pathway

See main section o article. Available at http://www.mndasso

ciation.org/or_proessionals/sharing_good_practice/mnd_year_

o_care.html. Additional downloads include equipment costs,

services and learning rom the development o the tool in Leeds.

2. Cough assist

This device, more requently used in cystic brosis to assist secre

tion clearance, is being used to aid people with motor neurone

disease to expectorate secretions. It can be particularly helpul

or those individuals who are experiencing prolonged coughing

episodes as they attempt to clear secretions, resulting in extreme

breathlessness and oten triggering an Accident & Emergency

attendance and possible admission to hospital. Assessment or

cough assist is usually provided by specialist respiratory centres

who also oer noninvasive ventilation.

3. Swallow reminder badge

This badge delivers a sound at a preselected time interval to re

mind the individual to swallow their saliva. With prolonged use,

anticholinergic medications prescribed to reduce saliva produc

tion seem to become less eective, and the badge can be helpul

in delaying the introduction o medication.

www.winslow-cat.com

4. Proessional Respiratory Checklist Cards

This is a handy pocketsized checklist to remind the practitioner

about the symptoms suggestive o carbon dioxide retention an

indication o respiratory ailure, and the need or reerral or con

sideration o noninvasive ventilation.

www.mndassociation.org

5. The Grid 2

This sotware package can be loaded onto standard desk andlaptop computers. It enables switch users to easily access all o

the unctions they would normally use on their computer plus

use it as a communication aid.

www.sensorysotware.com

6. Drinkup

This new drinking device is designed to enable more physically

dependent individuals to drink via a straw without the assistance

o carers when seated or in bed. The system accepts any house

hold cup, mug, glass or drinks can. For larger quantities o liquid,

Drinkup has also been designed to take a standard NHS drinks

jug, together with a modied lid.

www.drinkup.uk.com

7. Sl drinks

Hot and cold drinks are available in a variety o avours in the three uid

consistencies recommended in the National Descriptor Guidelines

or Texture Modication in Adults syrup, custard and cold only pudding consistencies. The easy to prepare drinks are supplied as powderin a plastic cup to which hot or cold water is added and then stirred toachieve the desired consistency. Blackcurrant, lemon, orange, white coee and chocolate are available on prescription in the community, and

can be helpul in overcoming the issue o carers adding thickening

powders to drinks being viewed as administering medication. A

standard consistency is achieved, eliminating variability.

www.slodrinks.com

8. Biotene Dry Mouth Toothpaste

This nonoaming toothpaste can be helpul or people with

bulbar motor neurone disease who are no longer able to rinse

and spit out when cleaning their teeth.

www.biotene.com

9. Botox

There is an increasing research evidence base or the use o

botulinum toxin injections into the salivary glands to reduce

intractable excess salivation which is no longer responding to

anticholinergic medication.

Giess, R., Naumann, E. Werner, Riemann, R., Beck, M., Puls, I., Rein

ers, C. & Toyka, K. 2000 Injections o botulinum toxin A into the

salivary glands improve sialorrhoea in amyotrophic lateral scle

rosis,J Neurol Neurosurg Psychiatry691, pp.121123.

10. Advance decision to reuse treatment

It is important that people living with motor neurone disease

make inormed decisions about uture symptom management

options or example, their choice as to whether they would

want to have a eeding gastrostomy in the ace o increasing

dysphagia, noninvasive ventilation i in respiratory ailure, or

invasive ventilation in the case o a respiratory arrest and that

they record these decisions in a way that their wishes can be

carried out legally. Speech and language therapists can play a role

in introducing these discussions, and acilitating communication.

I there is evidence o early cognitive changes associated with

the motor neurone disease, it is important that these discussions

happen early on. The National Council or Palliative Care Guide

or Health and Social Care Proessionals is a useul resource.

http://www.endoliecareoradults.nhs.uk/eolc/iles/NHS-EoLC_

ADRT_Sep2008.pd

11. Understanding My Needs Booklet

Many people with motor neurone disease report poor

management o their neurological symptoms when admitted to

hospital or other care settings such as respite due to proessionals

lack o knowledge about motor neurone disease and how the

individual wishes to be cared or. By having this orm completed

and uptodate, this inormation can be readily communicated to

caregivers in the event o a planned or unplanned admission.

Available rom www.mndassociation.org

12. Computer Accessibility

A number o adaptations can be made to any computer through

the Windows accessibility programme and wizard to make it

easier to use or those with a disability. These include changes

to key responsiveness, keyboard shortcuts or those who have

difculty using a mouse and changes in cursor size/colour. The

programme is accessed as ollows:

1. Click on the START icon

2. Click on All Programmes

3. Click on Accessories

4. Click on Accessibility

5. Click on Accessibility Wizard

6. Activate the options that you think might make the keyboard

and computer easier to use.



CARE PATHWAYS

REFLECTIONSDO I ADDRESS POSSIBLE FUTURENEEDS IN A SENSITIVE AND TIMELYFASHION?DO I UNDERSTAND ENOUGH ABOUTWHAT OTHER SERVICES CAN OFFERTO MAKE APPROPRIATE REFERRALS?DO I KEEP UPTODATE WITHCHARITIES RELEVANT TO MY CLIENTGROUP?

or the purchase o a variety o communication aids or the duration o the disease couldbe argued to be overgenerous.

b) DysphagiaWith the onset o swallowing difculties there isthe need or regular review, advice on compensatory strategies and modied consistencies,and education o ormal and inormal carers.

Objective assessments such as videouoroscopy or FEES breoptic endoscopic evaluation oswallowing are not listed as routine, but maybe needed in some cases.

c) SialorrheaDifculty controlling saliva cooccurs with dysphagia, and the speech and language therapist is oten involved in assessment and adviceabout symptom management, including use omedication and provision o equipment suchas a swallow reminder badge gure 1, no.3.These are not included in the core medicationand equipment costings.

This all suggests that, while the initial

281,359 might have sounded high, in realityit could prove challenging to meet all clientneeds within cost.

The Motor Neurone Disease Year o CarePathway is useul or practising speech andlanguage therapists, speech and languagetherapy service managers and commissioners,but what about the client perspective? I askedHal Bailey what dierence it would have madehad it been available to him.

Bev: What problems have you experiencedtrying to access the appropriate services/equipment using the current system?

Hal: Although I am happy with the NHS provision o service, without the nancial support othe MND Association or certain items o equipment I would be struggling. The provision oequipment tends to be basic with little choice orconsideration o the individuals circumstances.

There are two instances where the equipmentI was oered wasnt ideal or my situation.The rst was my communication aid. Havingtested the one oered by the NHS it was largeand bulky and not practicable or my currentliestyle. Because I use two sticks I was lookingor a communication aid which I could easilycarry in my pocket, and which was quick touse, the hand held unit rom Possum answered

my problems. The NHS solution was large andbulky and this alternative solution was undedby the MND Association. The second issue wasthe problem o getting out o bed. The optionsuggested by the NHS was a mattress liter,which would be ne i I slept in a hospital bed,but as a couple we are determined to keeplie as normal as possible. Again the MNDAssociation came to my aid and contributedtowards an electric adjustable bed.

Bev: How would local implementation o aYear o Care have made a dierence to you?Hal: I the unding o up to 7000 or a computerbased communication aid as per theyear o care had been immediately available

Do you wish to comment on the impactthis article has had on you? Please see theinormation about Speech & LanguageTherapy in Practices Critical Friends atwww.speechmag.com/About/Friends.

then it would have been possible or the NHSto purchase my aid without having to wait orunding to be sought rom various alternativesources, and without having to access charitable unding.

Bev: What do you think about people holdingtheir own budget or services and equipment?Hal: For me, the whole purpose o care is notwho holds the budget, but trying to maintainlie as normal as possible. I that means hold

ing your own budget then I will take that route.I personally think that it is horses or coursesin that it would not suit everyone. Plus therewould have to be some orm o control on howthe budget is spent. I I had a personal healthbudget I probably would have spent a largerproportion on physiotherapy.

Bev: Is there anything else you would like toshare with the speech and language thera-py readership?Hal: In September 2007 I started looking atwhat was available to assist me in communicating. I was ortunate enough to be able to research the market place through the internet.

At this stage I had not mentioned this to myspeech therapist. I ound that there were several communication aids in the market placeand, as in all walks o lie, there is not one solution that suits all. I was lucky enough be able totest a number o the products mainly througha direct approach to the companies sellingthe products. I also tested the product on oer through the NHS. Had I not been in a position to research the market, I wonder whetherI would have ended up with a device that wastotally impracticable? I have since spoken toa number o people where the NHS solutionis collecting dust and not being used! In my

position, I undertake the research so that I canremain as independent as possible whilst try

ing to maintain as normal a lie as possible; noteveryone is as ortunate as me to have accessto a computer to do this.

Beverley Hopcutt is Speech and Language Thera-pist at the Manchester MND Care Centre, andTherapy Service Manager (Stroke & Neuro) at Man-chester Royal Inrmary, e-mail [email protected]. She is also the Department o HealthsClinical Advisor or the Long Term NeurologicalConditions NSF. Hal Bailey retired in 2003 aged 57

as Managing Director o a sotware company, andwas diagnosed with MND in 2004. He is newsletterand website editor or the Cheshire Branch o theMND Association, www.mndcheshire.org.

ResourceThe National Service Framework orlong term conditions is available at:http://www.dh.gov.uk/en/Healthcare/Longtermconditions/LongtermNeurologicalConditionsNSF/DH_4128647.

SLTP

Photos o Hal and Margaret Bailey by Karen Wright


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WINNING WAYS


The meeting o two personalities is like thecontact o two chemical substances:i there is any reaction, both are transormed.Carl Jung

Why cant they just get on? is a pretty universalquestion in amilies, schools, voluntaryorganisations, businesses, religions and

countries. Is conict just part o being human?I so, why is it so uncomortable? Why does itleave us nished either high with excitementor low with the legacy o hurt eelings andminds racing with unresolved issues?

When Speech & Language Therapy inPractice editor Avril Nicoll asked readerswhat problems they most oten encounteras speech and language therapists, conictgured highly. The rustration that conict canprovoke comes out in some o the languageused readers want advice on dealing withdemanding patients and difcult memberso the multidisciplinary team. It is clear

that conditions can engender conict, beit the very antagonistic nature o SENDISTwork, or being managed by someone romanother agency with very dierent prioritiesand working culture. Readers understandthey have responsibility or negotiation andresolving situations but want to succeed inassertiveness and still retaining enthusiasm.

This suggests that, like me, you believeconict is a part o being human and that until we are all raised to the levels o the greatenlightened ones we just have to deal withit.

There are many dierent reasons as to whypeople argue but they can generally be boiled

down to issues around values, needs andexpectations and rights. People want to beright, and will deend their corner energeticallyi the egoruled position is threatened. Thereare healthy and not so healthy ways to dealwith conict. Everyone has their own conictstyle and its my contention that your conictstyle, and your ability to stand back romand change it, will largely determine theoutcome.

I was recently asked to evaluate a coursewhich is in preparation or young peopleto help them develop healthy relationshipsTraining or Youth in Relating to Others. It

denes the various conict styles very useullyas ollows:

Conicting ideasA survey sent out to a sample o readers included an open question about which concernsthey would most like lie coach Jo Middlemiss to address in 2009. This third article

suggests that, by taking a step back rom workplace conicts, you can nd a creative andsatisactory solution.

1. Avoidance No Way2. Accommodation Your Way3. Competition My Way4. Compromise Hal Way5. Collaboration Our Way.

Avoidants simply wont engage and candrive others crazy by reusing to acknowledgethe causes o the conict. They hope that, ithey ignore it, it will all go away. It oten does,but will always come back in another orm,maybe with a bigger kick.

Those who accommodate give in, with ananything or a quiet lie attitude. Again thisis a slow burner and can cause deep seatedresentment in the accommodator, leading toillness, sudden bursts o emotion or a severecase o victimitis.

Competitors think that they need to beright more than they need to be happy. Theyeel good or a little while when the victory is

theirs, but i that victory is at the expense othe relationship, where is the value?

People who have a compromising style areinto give and take. They need to be open tothe opinion o others and are prepared to bepartially satised and not overly attached totheir own position. They do believe in win/win and this is oten a very eective styleindeed. The slight downside is that they maybe saving up their compromises and will usethem at a later date to win a big battle. It isone to be a little wary o because there maybe an unexpected payback!

Collaborators are not those that deal with the

enemy as the war time term would have youbelieve. No, they ocus on working together

with the team to nd a solution which meetsthe needs o all parties. Collaborators listenand talk, they discuss and clariy and really dowant to keep going until everyone can at leastbe aware o and acknowledge the positions o

others. This requires courage and honesty andreally does lead to healthier relationships inall areas o lie.

No prizes or guessing which one I avour.The challenge now is to work out which styleis yours, and which style operates in yourworkplace. How can you change and becomemore eective when conict makes itsappearance, as it most certainly will? Thinkingabout your conict style and recognising theconict style o others helps you to take a stepback rom the conict and a step orward intothe creative and satisactory solution which ismost assuredly available to you.

Jo Middlemiss is aqualied Lie Coach,who oers readers acomplimentary halhour coaching sessionor the cost only o yourcall. Please note thatJo moved in May 2009and her new telephonenumber is 07803589959.Jos book with CD Whatshould I tell you? AMothers nal words toher inant son is now

available.

READ THIS IF YOUWANT TO BE

AWARE OFCONFLICTSTYLESEFFECTIVE INCHALLENGINGSITUATIONSCREATIVE INRESOLVINGDIFFERENCES

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In this rst o two articles inspired by the late Dr Mark Ylvisaker, SamSimpson, Emma Gale andAshleigh Denman reect on the impact his ideashave had on their practice with people with brain injury, and the promisethey hold or other difculttoserve client groups. With the help o herclient PJ, Sam Simpson then goes on to demonstrate why Ylvisakersconcept o identity mapping is central to true rehabilitation.

Walking with

Dobermanns (part 1)READ THIS IFYOU WORK WITHCLIENTS WHOSTRUGGLE WITHBEHAVIOURALREGULATIONIDENTITY RECONSTRUCTIONIDENTIFYINGMOTIVATINGPERSONAL GOALS

Ten years ago, speech and languagetherapists working with adults withacquired brain injury aced a dilemma.Intervention or this client group had a

poor evidence base, with evidence on efcacylimited to speech and language diagnosesound more commonly in stroke aphasia, dysarthria, right hemisphere language disorder,dysphagia or learning disability social skills,and there were ew assessments tailored to theneeds o people with brain injury. There was apaucity o evidence or discussion o the realissues clinicians in brain injury rehabilitationaced. As a result, many o us struggled with

the legitimacy o our treatment approaches,in addition to difculty engaging clients witha brain injury in a rehabilitation process designed or people who had had a stroke. Thekey clinical issues or us included communication difculties alling under the umbrella ocognitive communication disorder, as well asmore general social interaction impairmentslike reduced awareness o listener needs, reduced turn taking and poor inerence andsocial inerencing skills. We also encounteredimpairments o insight and selregulation,which oten maniest as challenging behaviourand are more commonly seen as the provinceo clinical psychology. The models used by

our multidisciplinary team colleagues suchas errorless learning theories, awareness andinsight also challenged us to nd a rm theoretical basis or speech and language therapyintervention.

It was in this context that we rst cameacross the work o Mark Ylvisaker and hisclinical psychologist colleague, TimothyFeeney, in a special brain injury edition oAphasiology Ylvisaker & Feeney, 2000a.For the three o us, these articles were arevelation. They told a story o dobermannsand poodles to dierentiate between thetwo kinds o clients who typically access

brain injury rehabilitation services. Poodlesdescribed clients who turn up on time, carry

out seldirected work and show gratitude orour hard work. In contrast, dobermanns areoppositional, unreliable, insightless and antiauthority, oten exhibiting behaviour that isdifcult to manage in rehabilitation settingsand even less acceptable in the community.In short, the article described many o ourclients, who oten have a postinjury historyo alcohol or drug misuse, with oppositional

or antisocial behaviour, and who struggle toaccess traditional brain injury services.

In memory o Mark YlvisakerDr. Mark Ylvisaker was Proessor o Communication Sciences and Disorders, College o SaintRose, Albany, New York, USA rom 1990 until his death in May 2009. He worked with childrenand adults with cognitive, communication and behavioural disability or over 30 years in rehabilitation, special education, and community settings. He originally studied and taught philosophy beore becoming a speechlanguage pathologist. He published extensively and servedas consultant to a number o state, ederal and international projects dealing with brain injuryin children and adults. He also helped develop materials or educators, clinicians and parents,and was the primary contributor to the LEARNet web site www.bianys.org/learnet.Mark was delighted to hear about our orthcoming articles and had hoped to add his comments, but sadly this was not to be.

Ylvisaker and Feeney turned our traditionalmodel o speech and language therapyintervention on its head. They highlighted theimportance o engaging this difculttoservegroup o clients, involving them in the goalsetting process and nding out what motivatesthem. In addition to describing their programme,they were able to demonstrate how theoutcomes improved the quality o lie o their

clients and reduced the cost to the state o theirsupport longerterm. They proposed models

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o working which have helped to develop apractical, holistic, integrative approach to braininjury rehabilitation, based on sound theoreticalmodels. They have since applied these toother adult and paediatric client groups whodemonstrate selregulatory impairments, suchas those with attention decit/hyperactivitydisorder or autism, with signicant success.

In the intervening years, the work o Mark

Ylvisaker and Tim Feeney has been adoptedwidely by speech and language therapistsand clinical psychologists working in the eldo brain injury. All three o us have attendedconerences and study days Ylvisaker has runhere in the UK on his many trips since he wasrst invited over by the Speech and LanguageTherapy Head Injury Specic Interest Group in2003.

Ylvisakers work highlights two competingmodels or rehabilitation Ylvisaker et al.,1999.The traditional model is hierarchical, with aclear progression rom work at the level o impairment, through activity, to a later ocus onparticipation. The alternative model proposed

by Ylvisaker reverses this traditional hierarchygure 1.

Using this alternative model Ylvisaker hasdeveloped a range o interventions ocusing ongoal setting, group and individual project work,use o metaphor and identity mapping. Oursecond article in the Winter 09 issue will ocuson project work, with Emma Gale detailing howshe has applied this to groups in a rehabilitationsetting and Ashleigh Denman describing someo the projects her individual clients have workedtowards in the community. In the rest o this rstarticle, Sam Simpson describes how she has putYlvisakers ideas about identity reconstruction

into practice with a recent client.

Identity reconstructionDifculty reestablishing an organised andcompelling sense o personal identity has

been identied as a critical theme in outcomestudies o severe brain injury and an obstacleto active engagement in rehabilitation. Ylvisaker thus positions identity reconstructionas central to rehabilitation. He argues that, unless there is a strong correlation between anindividuals rehabilitation goals and sense opersonal identity, rehabilitation eorts are atbest likely to be ineective and at worst coun

terproductive in that negative attitudes todisability and rehabilitation can be escalated.Ylvisaker et al., 2008.

With this in mind, Ylvisaker proposes aprocess o identityoriented goal negotiation,which he terms identity mapping, as a meanso coaching the development o a new lienarrative. Identity mapping aims explicitlyto assist individuals ater a brain injury toconstruct an organised and compellingsense o personal identity through the use ometaphor. In brie the approach involves theuse o a visual map gure 2 and a centralmetaphorical gure or concept to elicit whatis important to an individual. This acts as a

platorm to identiy rehabilitation goals.

The original literature gives a ull accounto the theoretical underpinnings o this approach Yvisaker & Feeney, 2000b; Ylvisaker etal., 2008. For the purposes o this article, I aimto illustrate how I have recently applied theuse o identity mapping and metaphor practically in my work with PJ, a 23 yearold manwith a traumatic brain injury.

In truth, my initial application o this approach

was a somewhat chance event. I chose toexperiment with identity mapping in directresponse to metaphors PJ brought to therapytwo weeks ater my having attended anYlvisaker study day. Little did I know the impactthat identity mapping was to have on both myclient and my subsequent clinical practice.

PJ had his brain injury at the age o 18 whenhe was on the cusp o becoming a proessionalsportsman. Whilst in many respects his rehabilitationhad been successul PJ was living back at homewith his amily, had a manual job and socialisedregularly with old riends ve years on, he wasnow grappling with questions about his uture. Heand his amily had initiated access to independent

speech and language therapy / counsellingas PJ was reportingreduced condencein group and novelsocial situations, whichwas impacting on hiscommunity access andsocial lie. PJ reportedsignicant eelingso despondency atthis time, having nopurpose and directionin lie, eeling requentlybored and drinking

heavily.The conversationthat triggered the useo identity mappingrelated to PJs havingrewatched the lmForrest Gump and

having identied strongly with the character oLieutenant Dan see www.imdb.com/character/ch0002105/bio or more inormation. The lm had

made such an impression on him that he was keento explore why and so we constructed the identitymap in gure 3 in response to this curiosity.

Traditional model orehabilitation

Identiy underlyingimpairments anddisabilities, with lessocus on participation.Focus on eliminatingor reducing underlyingimpairments withrestorative or trainingexercises.Compensatorystrategies used iimpairment persists.Later shit in ocusto context andenvironmentalcompensationsi activity andparticipation reductionpersists.

Ylvisaker model o rehabilitation

Identiy what is working/not working or theindividual in everyday routines that is, at aparticipation level.Identiy potential to change negativeroutines into positive routines and buildrepertoires o successul behaviour, throughchanging activities, the environment, thesupport o others or the individuals ownbehaviour.Identiy motivational sources or the individual.Facilitate intensive practice o positive routines in realworld contexts, to promote successul participation in meaningul activities,habituation o positive behaviours and theinternalisation o strategic behaviours.Systematically withdraw supports.Ongoing review to consider reintroductiono supports according to uctuation in lie

stressors.

Figure 1 Models o rehabilitation

Figure 2 Visual map

Figure 3 PJs identity map



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The development o this identity mapenabled PJ to talk openly or the rst timeabout his struggle to reconstruct a new robustpersonal identity since his injury. In addition itenabled him to reect on and make sense ohis drinking and increased anger dyscontrolat home. In relation to this, we constructed asecond identity map capturing his ears aboutollowing the same path as an older relative

this map has not been included here atPJs request. Whilst Ylvisaker tends to ocuson positive identity maps, the process oisolating and elaborating particular eatureso this eared sel enabled PJ to explore hisears openly. PJ subsequently chose to showthese two maps to his amily, thereby openingup discussions about the inner turmoil he wasexperiencing and the behaviours that he wasvery aware were impacting heavily on hisamily.

PJ was enthusiastic about the process oidentity mapping and reported specicallynding it helpul to organise muddledthoughts and get what was going on in my

head down on paper in a clear way, as heelt that none o it had previously made anysense. He was also expressing his readinessor change Prochaska & DiClemente, 1986,so we negotiated trialing identity mappingto elaborate specically on his hopedor selgure 4.

Whilst PJ was unable to identiy an overarching metaphor such as the original Lieutenant Dan one that encapsulated all o thequalities and activities o his hopedor selas recommended by Ylvisaker et al. 2008, hewas nevertheless able to work with the concept o me as I would like to be as an integrated representation o the changes he wouldlike to make. The very process o constructing

this identity map served to give orm, meaning, organisation and direction to his hopesand aspirations. The dierent dimensionswere reported to be particularly helpul inbreaking down the whole into more tangibleand manageable parts I could think abouthow I want to be, what I want to do and whereI could nd these things then I could pickwhat bit I wanted to look at and change.Writing the map down and having a permanent record also proved critical to the process everything became a reality once Id written it down something to aim or gettingthem written down made a valid point o medoing it.

Intrinsically motivationalThus the map became intrinsically motivational. This was evidenced by the many selinitiated changes in behaviour that accompanied and ollowed the actual constructiono the map, including a reduction in drinking,

increased physical exercise, a healthy eatingprogramme and exploration o urther studyoptions with the support o his amily. PJsengagement in the rehabilitation process hasincreased considerably with him now taking alead in directing the ocus o therapy and accessing the support he wants as and when hedetermines it to be relevant and timely.

PJ prioritised the overarching goal o

returning to study. He consequently identiedand signed up or a two year parttimeNational Diploma in Sport which commencedin September 2008. At the time o writing, hehas just completed the second term o his rstyear. We recently reviewed the identity mapin gure 4 as a means o tracking change. PJreported nding it particularly helpul tohave a clear, personally meaningul and seldetermined mechanism to evaluate the manychanges that have taken place over the past12 months. It also enabled him to see theinterconnections between the changes thathe has made. For example, by starting collegehe now has a more natural structure to his

week, has met many new people and madenew riendships.

This initial encounter with identity mappinghas been highly ormative or me. Having initially worked with PJ on developing his selawareness, interaction skills and condence inboth onetoone and group settings, identitymapping has enhanced goal negotiation andengagement to promote the generalisationo knowledge and skills into reallie meaningul contexts. Ylvisaker et al. 2008 proposea range o applications, as detailed in gure5 below.

I now regularly use identity maps as a

means o better establishing rapport, gettinga more integrated picture o my clients andnegotiating personally meaningul goals. Ialso use more metaphors to assist clients toselcue or example, how would I approachthis as Lieutenant Dan? As me as I wouldlike to be?. Finally, as a trainee counsellor,I increasingly use it as a scaold andspringboard to exploring underlying eelingsand emotional responses.

We strongly believe identity mapping is anapproach relevant to therapists working inmany elds with clients o all ages. At the veryleast we hope this article inspires you to read

Above: Figure 4 PJshopedorsel

Right: Figure 5

Identity mappingand metaphors:

a continuumYlvisaker et al.,

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more about Ylvisakers work and at most thatit promotes the crossertilisation o his ideasinto other areas o clinical specialism throughprompting you to consider how they mightbe applied to your work.

Sam Simpson is a specialist speech and languagetherapist and trainee counsellor at intandem(www.intandem.co.uk), e-mail sam@intandem.

co.uk. Ashleigh Denman is principal lead speechand language therapist with the GloucestershireBrain Injury Team, e-mail [email protected], while Emma Gale is clinical lead speech andlanguage therapist at the Royal Hospital or Neuro-disability in London, e-mail [email protected]. Part2 o this article will be in the Winter 09 issue.

AcknowledgementOur thanks to PJ or the courage he has shownand the teaching he has provided.


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ReerencesProchaska, J.O. & DiClemente, C.C. 1986 Towards a comprehensive model o change, in

Miller, W. & Heather N. Treating Addictive Behav-iours. New York: Plenum Press, pp.327.Ylvisaker, M., Feeney, J. & Feeney, T. 1999 Aneveryday approach to longterm rehabilitation ater traumatic brain injury, in Cornett, B.ed. Clinical practice management in speech-language pathology:

Speech & Language Therapy in Practice, Autumn 2009

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Transcript of Speech & Language Therapy in Practice, Autumn 2009