My Wheelchair is My Shoes Report - APPG for Paediatric Wheelchair Reform - Embargoed 1200 Noon...

8/6/2019 My Wheelchair is My Shoes Report - APPG for Paediatric Wheelchair Reform - Embargoed 1200 Noon 200611

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MywheelchairismyshoesMakingthecaseforwheelchairreform

June 2011

AllPartyParliamentaryGroupforPaediatricWheelchairReform


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GregMulhollandMPChairPaulMaynardMPVice ChairLordFoulkesofCumnockBaronessWilkins

RushanaraAliMPDavidAmessMPDameAnneBeggMPGordonBirtwhistleMPRichardBurdenMPKatyClarkMPAlexCunninghamMPPatGlassMPChrisHeaton-HarrisMPJohnHemmingMPStephenHepburnMP

PhilipHolloboneMPDianaJohnsonMPEricJoyceMPJohnLeechMPIanLucasMPAngusMcNeilMP

StephenMcPartlandMPSandraOsborneMPAndrewRosindellMPJimSheridanMPGrahamStuartMPRtHonRosieWintertonMP

MembersoftheAllPartyParliamentaryGroupforPaediatricMobilityReform

Sponsoredby:Whizz-KidzThis is a report by the All Party Parliamentary Groupfor Paediatric Mobility Reform compiled from evidencegiven by a group of experts over a series of sessionsheld in Parliament in the autumn of 2010. The evidencegiven describes the views of those experts on the stateof NHS wheelchair provision for children and youngpeople.

While similar issues may persist in the other nations ofthe UK because of the devolved nature of the NHS theexperts were asked to comment specically on provisionin England alone.

Acknowledgements:Sally Waters for writing this reportMelissa Kopff for editing this reportEliane Graham for administrative support

Whizz-Kidz4th FloorPortland HouseBressenden PlaceLondon SW1E 5BHt: 020 7233 6600e: [email protected] charity no: 802872


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HilaryCass Paediatric Neurodisability Consultant, Guysand St Thomas NHS Foundation Trust

JohnCowmanDirector of Community Services, Waltham

Forest at ONEL Community Services andDirector of Business Development for ONELCommunity Services at NHS Havering

JudithDavisHead of Clinical and Regional Services,Whizz-Kidz

CharlieFairhurstConsultant Paediatrician for ChaileyServices, Sussex and PaediatricNeurodisability Consultant, Guys andSt Thomas NHS Foundation and ClinicalGovernance Lead for the British Academyfor Childhood Disability

JamieGreen16 year old Whizz-Kidz Ambassador andsixth form student

KateHallettSenior Mobility Therapist, Whizz-Kidz

DavidHillCommissioning Manager,NHS Tower Hamlets

IanLegrandStrategic Service Advisor, Whizz-Kidz

ArunimaMisra23 year old lawyer, graduate of CambridgeUniversity, Business Ambassador forWhizz-Kidz and a beneciary of Whizz-Kidzsince the age of 14

KarenNayaDevelopment Manager, Care QualityCommission

RuthOwenChief Executive of Whizz-Kidz

DrSheilaShribmanNational Clinical Director for Children,

Young People and Maternity Services:

Department of Health Partnerships forChildren, Family and Maternity Division

CarolSquireJoint Head of Integrated Occupational

Therapy and Community EquipmentServices, NHS Tower Hamlets

AlwenWilliamsChief Executive London and City AllianceNHS and Formerly the Chief Executiveof NHS Tower Hamlets

KarlWoodsWhizz-Kidz Beneciary, Ambassador

and Volunteer

Expertwitnesses


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ForewordfromGregMulhollandMP,Chair of the APPG for PaediatricMobility Reform

I am delighted to introduce this report from the All Party ParliamentaryGroup for Paediatric Mobility Reform.

The APPG has been established for two years now, with the kindsupport of the charity Whizz-Kidz which provides mobility equipment

and training to disabled children and young people across the wholeof the United Kingdom.

Since then I have met young people, in Leeds and London, who arewheelchair users and seen a Wheelchair Skills scheme establishedin my constituency. What becomes clearer with each visit, initiativeand event is that child mobility is vitally important, and more hasto be done to ensure that children across the country have accessto the equipment they need.

It is a sad fact that today there are still 70,000 children who have theirmobility needs unmet. That is 108 children in each MPs constituency,

and although Whizz-Kidz is able to reach 1,000 young people per year,the number continues to rise.

This report seeks to highlight the success of the Whizz-Kidz model forNHS wheelchair services for children and young people. Members ofthe Parliamentary Group visited their Tower Hamlets service to see thesuccesses of the initiative. In Tower Hamlets there is no waiting list andthe equipment provided is appropriate and more sophisticated than isroutinely provided by the NHS in other parts of the country. The modelalso offers a saving of 60% for each wheelchair issued.

So where do we go from here? The Government are currently reviewinghow Health, Education, Social Care and Special Educational Needs and

Disabilities function, and Sarah Teather has outlined plans to join-upthese services. This provides a wonderful opportunity to integrate theTower Hamlets Model more widely.

The benets of developing this scheme are not contained to onedepartment; the Department for Education would save money onclassroom assistants and providing some specic equipment, such asdifferent height desks, whilst promoting accessible, independent learning.

The heart of this report is about giving all young people the chanceto lead a normal life. To give all young people the chance to developtheir independence, to get the most of out of their education, and the

best chance of pursuing rewarding careers. To give all young people thecondence and self belief to lead their everyday lives and do the thingsthat every young person should have the right to do to play, learnand socialise.

GregMulhollandMP

Chair of the APPG for Paediatric

Mobility Reform


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PresentationofevidencetoParliament:ReformingnationalpaediatricwheelchairservicesThe All Party Parliamentary Group forPaediatric Wheelchair Reform was formedin 2009 to highlight the need for reform of

wheelchair services for children and youngpeople. The group is sponsored by thenational charity Whizz-Kidz which providesmobility equipment and training to disabledchildren and young people throughoutthe UK. Experts providing evidenceincluded paediatricians, physiotherapists,executives and other professionals fromthe Department of Health, the Care QualityCommission, the NHS and Whizz-Kidz,as well as three young beneciaries ofWhizz-Kidzs services.

TheBigPictureThere are currently an estimated 70,000

disabled children and young people inthe UK who have unmet mobility needs.To achieve independence, self-sufciencyand, in many cases, basic comfort andhealth, these children need properly ttedwheelchairs appropriate to their individualneeds. Reform of paediatric wheelchairservices is absolutely necessary to breakthe cycle of discomfort, pain, dependence,and the many other disadvantages thatdisabled children experience as a resultof inadequate provision and negativelyimpacts our society as a whole.

ModelofSuccess:Whizz-Kidzand

TowerHamletsWhizz-Kidz partnered with the NHS TowerHamlets to reform the boroughs paediatricwheelchair services with resoundingsuccess, demonstrating that wheelchairservice reform is achievable within budget.As a result of the changes implemented,disabled children and young people inTower Hamlets now receive better qualitywheelchairs, procured at lower costs,with shorter waiting times, highersatisfaction, better mobility and widerbenets. In other words, the reforms havebeen an unqualied success.

FundamentalsforSuccessThe fundamental principles underlyingWhizz-Kidzs success include providingthe right equipment, based on the rightassessments, at the right time. This meansthat children and young people get chairs

that are designed to meet their specicclinical and lifestyle needs, as determinedby specialised paediatric therapists.

They do not receive scaled-down versionsof adult chairs. Assessments are holisticand family-orientated, and waiting lists areminimised, sometimes eliminated altogether.EfcientProcurementStrategyisEssential

To achieve these impressive results,Whizz-Kidz relies on intelligent procurementstrategies which enables them to havefast access to consignment stockwithout maintaining their own expensive

warehouses. Whizz-Kidz leverages itstherapists paediatric expertise to plan forpredictable equipment specications andto prevent unnecessary over-specicationof equipment, thereby reducing waitingtimes and minimising cost. Procurementchannels are designed to source bespokechildrens equipment, and encourage theprovision of creative solutions.

EligibilityCriteriaIn contrast to the restrictive, disparate andoften seemingly arbitrary eligibility criteriain place in areas throughout England, it isWhizz-Kidzs credo that no child or young

person is refused equipment if he or sheis in need of mobility aid.

CostisNotProhibitiveWith improved efciency and by takinga longer-term perspective on costmanagement, expense will not be prohibitiveto instituting dramatic reforms in wheelchairservices generally. This was demonstratedconvincingly by Whizz-Kidzs transformationof the paediatric wheelchair services in

Tower Hamlets.

Recommendations(1) Prioritisation: Ensure that paediatricwheelchair reform is spotlighted and placedvery high on the political agenda. Applypolitical pressure to ensure that reformedpaediatric wheelchair services are now a top

priority within the wider NHS reform agenda.(2) Articulate minimum standards:Articulateuniform standards which prescribe nationallythe level of care that paediatric wheelchairservices provide and, very specically, theoutcomes that must be achieved. Thisspecic guidance should be accompaniedby follow-up performance monitoring andon-going dialogue with providers to ensurestandards are maintained.(3) Initial investment:Although efciency,procurement strategy and a sensiblelong-term approach to cost control are

very effective in making wheelchair reformachievable, there are some areas that willneed additional funds to institute thesenecessary changes. For all the reasonsoutlined in this report, initial investmentin such improvements will prevent humanand societal costs down the road and,ultimately, lead to wider savings in healthand other public services.

(4) Joint working across local and nationalgovernment departments: Considerationof collective costs of inadequate provision across government departments, the NHSand local authority budgets highlights

the need for effective leadership andcoordinated action to reform wheelchairservices and achieve wider benets tosociety, the government as a whole andbetter outcomes for disabled children andyoung people.

(5) Roll out of proven service models:The Department of Health must workclosely with those organisations alreadyleading the way in effective procurement,assessment and delivery of wheelchairsto develop an implementation plan thatdelivers improvements to services acrossthe country and ensure that all disabledchildren and young people have accessto the right equipment at the right time.

Executivesummary


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I.Introduction: The Big Picture 01

II.ModelforSuccess:Whizz-Kidz and Tower Hamlets 02About Tower Hamlets 02Partnership with Whizz-Kidz 02Accolades 02Success 02III.FundamentalsforSuccess 04TheRightEquipment 04Potential clinical problems 04Potential developmental problems 05TheRightAssessment 05Specialised assessments for children 05Holistic, friendly approach 06TheRightTiming 06Waiting lists 06IV.ProcurementStrategy 07

No warehouses, yet fast access to stock 07Planning for predictable equipment specications 07Children and young people receiving dedicated services 07Motivating manufacturers to prioritise wheelchair users 08Preventing over-specication of equipment 08V.ProcurementChallenges 09Children lumped in with adults 09Fragmentation of wheelchair services nationally 09Lack of prioritisation of paediatric wheelchair services 09 VI.EligibilityCriteria 10Age-based restrictions 10Excluding other children categorically 11Postcode lottery 12VII.CostIsNotProhibitive 13Efciency can be improved 13False economies 13Small changes can make a big difference 14VIII:ConclusionandRecommendations 15

IX:Addendum:Somepersonalexperiences 16

Contents


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Disabled people represent one fth of the working agepopulation of the UK, but are far more likely to be outof work, to lack skills and to live in poverty than thepopulation as a whole. Improving skills and increasing

employment rates for disabled people matters not just forequality and social justice, but also for national prosperity.Raising the employment rate of disabled people to thenational average would boost the UK economy by 13billion, the equivalent of six months economic growth.(Social Market Foundation Report, June 2007). Critically,success relies on raising the aspirations of disabled peopleand increasing their opportunities, as well as improvingsocietys attitudes towards disabled people and raisingits expectations of them.

It is crucial that this process starts in childhood, and theearlier the better. The sooner disabled children are allowedto achieve age-appropriate independence, the better theycan develop the skills and condence on which they will relythroughout their lives. For the mobility-impaired child, havingthe right wheelchair to suit his or her needs is fundamentalto being independent. Furthermore, disabled childrenwho are mobile, independent and condent in childhoodleave an impression on their peers as being active and

capable; positive perceptions which will stick with thoseother children throughout their adult lives. It is imperativethat reform of wheelchair services for children and youngpeople be prioritised to break the cycle of discomfort,pain, dependence, and the many other disadvantages thatdisabled children experience and negatively impacts onour society as a whole as a result of inadequate provision.

I.Thebigpicture


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Throughouttherestofthisreport,evidencewillbepresentedhighlightinghowcriticallyimportantitistoreformwheelchairservices.Expertwitnesseswillshowthatitisirrefutablethatmobility-impairedchildrenneedto

beprovidedwiththerightequipment,basedontherightassessments,attherighttime.Thenecessityofprovidingspecialisedpaediatricservices,institutingefcientprocurementstrategies,standardisingeligibilitycriteriaandfocusingonoutcomesratherthancostwillbemadeclear.First,however,weneedtobelievethatthesereformsareachievable.ThepartnershipbetweenWhizz-KidzandtheTowerHamletsPrimaryCareTrustprovidesuswiththemodelforsuccess.

AboutTowerHamlets

The inner-city demographics of TowerHamlets make this borough particularlyconvincing as a success story. Accordingto the Ofce for National Statistics, LabourForce Survey(ONS, 2007), disabledchildren are 50% more likely to be bornin an inner-city area than their non-disabledpeers. Disabled people are also far lesslikely to be skilled; they are half as likelyto have a degree and twice as likely to haveno qualications at all. They are similarlyless likely to be employed; only 50% are inwork, compared to 75% of the populationas a whole. Consequently, Tower Hamletshigh unemployment rates and large

population of disadvantaged minoritiesmean that its wheelchair services had anabove-average caseload from the outsetof the project. It was thus a particularlychallenging place to make reform a reality.

PartnershipwithWhizz-KidzIn 2007, NHS Tower Hamlets formed apartnership with Whizz-Kidz to deliverwheelchair services to children and youngpeople at the Mile End Hospital. The goalof the partnership was to provide a highstandard of service in line with Whizz-Kidzpractices. These high standards includeproviding the right equipment to meet thechildren and young peoples specic needs,providing specialised assessments bypaediatric therapists, reducing or eliminatingwaiting times, and having a exible approach

to the application of eligibility requirements;it is the Whizz-Kidz credo that no child oryoung person is refused equipment if heor she is in need of mobility aid. In 2008,Whizz-Kidz became the lead provider forthe paediatric wheelchair service at NHS

Tower Hamlets.

AccoladesWithin the rst year, Whizz-Kidz workedwith the established service to deliverequipment to over 100 children andyoung people who had previously beenon the waiting list. In 2008, the servicewas awarded the Health and Social Care

Award for Dignity in Care by the Social CareInstitute for Excellence for the rst initiativeof its kind to systematically pool resourcesand expertise of the statutory and voluntarysector to provide an integrated service.

The same year, Rt Hon Ed Balls MP andRt Hon Alan Johnson MP, as Secretary ofState for Children, Schools and Family andSecretary of State for Health respectively,visited the wheelchair services to see thesuccess for themselves.

In 2009, the Department of Health andthe Department for Children, Schools andFamilies published the Child Health Strategy.

In this publication, NHS Tower Hamletspaediatric wheelchair service was heldup as good practice, and it wasrecommended that other primary care

trusts consider adopting the same model.In 2009, Andrew Lansley, the ShadowHealth Secretary at the time, visited the

Tower Hamlets wheelchair service andasked Ruth Owen, the CEO of Whizz-Kidz,to present on the future of wheelchairservices to the Conservative PartyConference. When David Cameronpresented on the future of the NHS, heproclaimed that the charity Whizz-Kidzis a good example of how a genuinepartnership approach can work.

SuccessSince 2007, Whizz-Kidz has virtuallyeradicated the waiting list. The majorityof new referrals are provided with anappointment within two weeks, and many

take their new equipment home on the dayof their rst appointment, a process whichis aptly named child in a chair in a day.Whizz-Kidz has earned 100% satisfactionrates, which is not only indicative ofsuccess, but has saved NHS Tower

Hamlets from defending complaints whichcost in the region of 1,000 per complaint.Whizz-Kidz has succeeded in focusingon early provision, helping give poweredmobility to children as young as two yearsold. The success of the par tnership andthe work of Whizz-Kidz have resulted inover 400 children and young peoplereceiving the equipment and care thatthey needed.

To achieve this success, Whizz-Kidzformed strategic alliances with corporatepartners to ensure an efcient andeffective service. Tesco PLC introduced

Whizz-Kidz to procurement specialists whohave helped the charity access bespokemobility equipment more quickly and atlower prices. Accenture (UK) Ltd introducedprocess consultants who helped Whizz-Kidzdevelop lean processes enabling themto provide many children with equipmenton the same day as their assessment.In the future, Whizz-Kidz hopes that up to70% of its beneciaries will go home fromtheir assessments with their wheelchairs.

In addition to delivering equipment,Whizz-Kidz also offers advice, trainingcourses and social opportunities for the

children and young people they serve.All beneciaries are offered the opportunityto become ambassadors for Whizz-Kidz.As ambassadors, they can play an activerole in the charitys work, attend theirlocal ambassador club meetings, and getthe chance to take part in training, workplacement opportunities and events whichhelp them gain essential life skills all whilemaking friends and having fun. As a result,children and young people are developingcondence, independence and a senseof empowerment, whilst also enjoying beingdirectly involved in the charitys work.

In 2010, Whizz-Kidz commissioned a reportfrom leading health economists FrontierEconomics to measure the progressachieved in Tower Hamlets since 2007.

II.Modelforsuccess:Whizz-Kidz and Tower Hamlets


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The report concluded that as a resultof the changes, the population of TowerHamlets now receives better qualitywheelchairs, at lower costs, with shorterwaiting times, higher satisfaction, bettermobility and wider benets. In other words,

it has been an unqualied success.

More specically, in compiling the report,Frontier Economics found that under thenew scheme, the cost per wheelchair ison average 1,100, in contrast to the former2,700 price tag through business as usualmethods. Whizz-Kidz has thus succeededin delivering the right wheelchairs, fasterand more easily, with a cost savings of 60%.

The report also cited signicant, lessquantiable benets, including the widerhealthcare savings of preventing futureclinical complications by providing

equipment promptly. Additionally, it

acknowledged the improved qualityof life for carers, and the fact that fasteraccess to the right equipment freesup time for family members to accept morepaying work and to spend more time withother members of their families, ultimately

improving the quality of life for many.In reaching these conclusions, FrontierEconomics emphasised that it neverthelesshad adopted a conservative approach,and did not take into account the improvededucation and employment opportunitiesfor the beneciaries, which are likely.

If such unmitigated success can be achievedin Tower Hamlets, it can be achieved inany other wheelchair service in the country.

The argument for reform is highly compelling,and is further promoted in the followingexamination of the fundamental principlesand strategies that form the basis of

Whizz-Kidzs success.

Dominic

Since Whizz-Kidz frst partnered with Tower Hamlets,the organisation has seen approximately 400 children and

young people, and provided access to appropriate mobilityequipment and also training. Assessment has been very

holistic, looking at medical needs, but also social needsand training needs, with very much a ocus on ensuring thatchildren and young people are able to realise their potential

despite their disability. I am very pleased to say that roma quality perspective, the waiting times have been reducedsubstantially and, in act, there are now no waiting timesin Tower Hamlets. There is very high satisaction romthe children and young people and their amilies. Havingwitnessed numerous children being assessed and receivingtheir wheelchairs, and just seeing the independence that

gives those children, and hearing their own personaltestament is amazing and I very much see my role as

supporting Whizz-Kidz in brokering their partnerships

with the NHS.AlwenWilliams,Chief Executive, London and City Alliance NHS Formerly the CEO of NHS Tower Hamlets


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TheRightEquipmentEach child or young person with impairedmobility needs appropriate equipmenttted to his or her specic needs.With the right equipment, mobility-impaired

children can lead lives on a par withtheir peers. Children can play, learn,and develop physically and emotionally.Young people can socialise with theirfriends, go to university and join thework force. They can achieve freedomfrom their parents and carers, developtheir own personalities, participatein society, contribute and take chargeof their own lives.

I always say that my wheelchair is myshoes. At the end o the day, its a pairo shoes to me and it gives me the abilityto lead an independent lie. You wouldnt

think o sending a child to school withoutany shoes in this country, and i you didyou would be hauled up or negligence...I think there is nothing more empoweringthan to get your frst taste o reedom

you dont lose that eeling o making yourown choices, your own riendship circles,the act that you just want to be naughtyor that day or have a strop or go to your

bedroom and have a sulk away romyour parents.RuthOwen,Chief Executive of Whizz-Kidz

It is vitally important that children havechairs that are designed to suit their needs,rather than scaled-down versions of adultchairs. For a chair to provide real mobility,by denition, the child needs to be ableto use it to move around. For many children

this means having a powered chair. On thewhole, it is very difcult for children to accesspowered wheelchairs through the NHS.

For some children, however, the best option

is an agile, manual wheelchair that they canoperate under their own steam, maximisingtheir physical capabilities. Heavy adultequipment can entirely subvert the potentialbenets of a manual chair. Lightweightmanual chairs can weigh as little as 4kgand still provide all the requisite posturalsupport. These chairs can be speciallytted with eMotion wheels which enable theuser to navigate hills, sharp ramps andsteep inclines. eMotion wheels providepower-assistive technology to propelthe chair through places that might nototherwise have been accessible. As a result,children can take advantage of their existing

physical abilities without hindering theirability to get around comfortablyand efciently.Powered chairs and specially-ttedlightweight manual chairs are examplesof solutions that can meet the specic needsof different young people. These youngpeoples disabilities do not need to preventthem from living their lives very much liketheir peers do; they just need the correctequipment to do so.

Potential clinical problemsThe clinical problems caused by incorrect

or ill-tting wheelchairs, particularly byscaled-down adult chairs, include a varietyof injuries, pressure sores, septicaemia,rotator cuff tendinopathy (degeneration ofthe tendons around the shoulder), dislocatedhips, scoliosis, deformities, hospitalisation

and surgery. Sometimes childrenswheelchairs cause them so much painor spasm that they are only able to sitin them for very short periods.

Some o the equipment the NHS is providing

is actually detrimental to young peopleshealth. Basic things like where wheels arepositioned in relation to the shoulder sothey are actually providing equipment which

is building in the need or surgery later.IanLegrand,Strategic Service Advisor, Whizz-Kidz

I see, on average, three or our newpatients a week with unmanaged pain anddiscomort rom badly-adjusted equipment.I see a urther two or three, on average,ollow-up young people who have on-going

issues needing to be addressed. This

brings you to about six per week. However,i you include the spinal and orthopaedicservice as well, we are seeing at leastdouble that number.

CharlieFairhurst,Consultant Paediatrician for ChaileyServices, Sussex; Consultant of PaediatricNeurodisability, Evelina ChildrensHospital, St. Thomas, London; ClinicalGovernance Lead for the British Academyfor Childhood Disability

Providing the correct equipment, ttedproperly, can prevent these problems

entirely. Researchers support this view,including Boninger, et al (2000), Samuelson,et al (2004) and Mulroy, et al (2005).The Spinal Cord Rehabilitation Unit hasconcluded that:

There is level 4 evidence that moreorward position o the rear wheel improves

push rim biomechanics, shoulder jointorces, push requency and stroke angle.Manual wheelchairs with adjustable axle

position appear to improve wheelchairpropulsion and reduce the risk o upperextremity injury.

The right seating is of paramountimportance to someone who must sit ina chair for more than 12 hours per day.According to May, et al (2004), prescribingthe correct seating facilitates

III.Fundamentalsforsuccess:The right equipment, the right assessments,and the right timing

On a biological level, getting the right chair is critical iyou are going to make sure that a persons physicaldevelopment is not hampered. Depending on the disability,

you can have, as a result o not being in the right chair

at the right time, deormities develop which inhibit thatpersons ability to do everyday activities and ultimatelylook ater themselves, go to work and gain an education.CarolSquire,Joint Head of Integrated Occupational Therapy & Community Equipment Services, NHSTower Hamlets


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the management o abnormal tone,accommodation or prevention o deormity,improvement or maintenance o unctionalskills, accommodation or impairedsensation and provision o comort.

The right equipment can prevent discomfort,pain and other grave clinical problemsexperienced by too many children.

Potential developmental problemsHaving the wrong chair can cause a childa myriad of developmental problems aswell. Children who are not allowed age-appropriate independence and who aresimply pushed around by their carers, leftout of ordinary childhood interaction, candevelop learned helplessness. Playing isa crucial developmental process; a childwho is trapped immobile, or whose handsare not free, cannot play like other children.

When a child is reliant on being pushedaround, there is very little chance for hisor her personality to become the dominantfeature in interactions; interactions willalways be dominated instead by thepresence of the person pushing the chair.From a purely social perspective, it isintuitive that a young person cannot socialisewith peers on an equal level if that youngperson has no autonomy or privacy.

Having the correct equipment can alsobe important for the development ofcommunication.

[I want to stress] the importance owheelchair provision in communicationand cognitive development because myearliest exposure to wheelchair servicesis actually through developing augmentativecommunication devices or children, thatis speech outlook devices. More otenthan not we never got as ar as being ableto advise on what kind o communicationaid that child would need. They wouldntactually have a wheelchair to fx it on to,so they werent in a position where theycould use it. So, those children were beingdeprived not just o their mobility, but alsoo the ability to communicate.HilaryCass,Paediatric Neurodisability Consultant Guysand St Thomas NHS Foundation Trust;Trustee Board Member, Whizz-Kidz

A child who is unable to communicate andunable to develop properly is inevitably goingto have a very difcult time succeedingin school, having relationships, going touniversity, nding work, and leading a happyand productive life.

TheRightAssessmentCentral to providing the right equipmentis correctly assessing the needs. Specialisedpaediatric therapists (who may be eitheroccupational therapists or physiotherapistsby background) are best able to recognisethe needs of each child and prescribe thebest equipment accordingly.

Specialised assessments for childrenIt is important to remember that paediatricassessments are fundamentally differentto adult assessments. Children are not onlysmaller, but they grow and develop, have

different lifestyles, different vulnerabilities,different activities, different capabilitiesand different limitations.

We need a very specifc compare andcontrast regarding what is needed orchildren and what is needed or adults,

and what is done or adults would notnecessarily work or children, so we needto look at this population dierently.

HilaryCass,Paediatric Neurodisability Consultant Guysand St Thomas NHS Foundation Trust

Some primary care trusts dont even havea paediatric therapist, and many primarycare trusts throughout the UK providepredominantly adult wheelchairs or adultservices, and children are let on the side.You dont need hundreds o wheelchairsbut you do need more than one.CharlieFairhurst,Consultant Paediatrician for ChaileyServices, Sussex

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Dominicisfouryearsoldandlivesathomewithhismum.Dominichasaneuromusculardisorderandbytheageofthreeyearshewasstillunabletocrawl,stand,orwalkdue

tomuscleweakness.Ashepassedthestageswherechildrenachievethesedifferentmilestones,hehadremainedverydependentonhismum.Hismumsaidthathewassoreliantonherthathewasscaredtodoanythingwithouthelp.Hewouldntevenaskfortoys,playingonlywithwhateverwasnexttohimandwithinreach.

Concerned that Dominic was notachieving crucial stages in hisdevelopment, his mum approached thelocal wheelchair service only to be told

that, at three years of age, he was tooyoung to qualify for equipment.

After getting in touch with Whizz-Kidz,Dominic now has a powered wheelchairwith dual controls. The dual controlsmean that he can practice and buildcondence getting about in his chair whilehis mum looks on knowing she can stepin and help if he needs it. His mum nowsays hes unrecognisable as he chaseshis brother and sister around the park.

Dominic


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Holistic, friendly approachThe therapists at Whizz-Kidz provide holisticassessments which take into considerationmany elements, including clinical needs,physical abilities, and characteristics of theschools, homes and communities, as well

as individual preferences.

Things that amilies repeatedly andconsistently say are o constant concernto them, you wont be surprised to hear,

include access to the right support at theright time. It is about timeliness, it is thatpathways are managed, it is that amiliesare the priority and are prioritised within thesystem. It is that they have inormation thatthey need, and that they also eel able to

inuence and make choices regarding theirconcerns. Families need to eel included,

and particularly need to eel that they havesupport to access the right wheelchairs.

KarenNaya,Development Manager, Care QualityCommission

At Whizz-Kidz, dedicated paediatrictherapists provide personalised, attentiveservices so that a given child sees the sametherapist each session, and the family candevelop a relationship with that therapist.

Children and young people are often moresensitive to their environments. To promoteoptimal communication, it is important forthem to be in an environment that is friendly

and comfortable, in which they can feelrelaxed about attending appointments andcondent about expressing their needs.A child is in the best position to explainwhen a piece of equipment does not feelquite right, and it is vital to success that suchfeedback is heard, and that the child feelsempowered in his or her circumstances.Having a one-on-one relationship with thetherapist makes it easier.

Unlike most adults, young people haveparents and families who are inextricablyinvolved in their choices and in their care; it isimportant that parents and family membersalso feel that they can raise concerns and bea part of the dialogue.

The child-parent dynamic is unique topaediatric cases, and is therefore a dynamicthat Whizz-Kidz has experience managing.Whizz-Kidz believes in a focus on theyoung person.

There can be conicts because we andthe child and the young person want to be

mobile, and they want to go down to thepark with their mates, but mum wants themto sit in the buggy because it looks normal.

IanLegrand,Strategic Service Advisor, Whizz-Kidz

[In the NHS services], I think youre notalways listened to, I think its very slow,I think it doesnt always ocus on thechild and the young person, it tends to beocused quite on the amily and the parent,

and I think that one o the things we do as

an organisation is very much ocus on theyoung person.RuthOwen,Chief Executive for Whizz-Kidz

Without holistic, specialised, family-friendlyand child-friendly personal assessments, itwould be impossible to guarantee that anypiece of equipment, regardless of quality,would be the best equipment for that child.TheRightTimingWaiting listsWhile the right assessment can determine

what the right equipment is for a particularyoung person, if the waiting list for thechild is long, neither the right assessmentnor the right equipment will do any good.Waiting lists, sometimes shockingly lengthy,are practically endemic to NHS wheelchairservices for children.

I have had experiences in the past where,in the NHS, children have been waiting12-13 months or an initial assessmentto be seen and it is roughly the same timeagain that equipment can be provided orthem, so obviously youve got all sorts odifculties around whether the assessmentis still relevant by the time the equipmentis being received.

KateHallet,Senior Mobility Therapist, Whizz-Kidz

When children need to wait for over a yearafter their initial assessment to receive theirequipment, as is often the case, they arelikely to have outgrown the wheelchair bythe time they receive it. What once may havebeen the right chair becomes the wrong

chair, with all the attendant complications.Of course, this means wasting money on thewrong chair, causing pain and discomfortfor the child, risking future surgeries andhospitalisation, and causing the child to missout on life in the interim. Sometimes theyoung person waits more than a year just forthe initial assessment; this too means thathe or she is foregoing critical care.

In 2007, some very long waiting times,including a our-year waiting time, werequoted or powered wheelchairs, citing lacko unding.

Dr.SheilaShribman, National ClinicalDirector for Children, Young People andMaternity Services; Department of Health,Partnerships for Children, Family andMaternity Division

The net result I think is that childrenwait too long or equipment that is not

as appropriate as it could be, therebylimiting their own independence andtheir own development.JohnCowman, Director of CommunityServices Waltham Forest at ONEL CS;Director of Business Development for

ONEL CS at NHS Havering

Whizz-Kidz has already proven through itswork with Tower Hamlets and other primarycare trusts that these waiting times can bedrastically reduced or eliminated completely.Whizz-Kidz provides us with models of thesefundamentals of success. Providing the rightequipment, based on the right assessments,at the right time to mobility-impairedchildren and young people is an achievablevision. For thousands and thousands ofchildren, and the many people in theirlives, addressing the existing problemsin wheelchair services would make anenormous difference.


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How is Whizz-Kidz able to do such aneffective job? Procurement strategy isat the core. The importance of astreamlined, outcome-driven procurementstrategy cannot be overstated. Throughcorporate partnerships with Tesco and

Accenture, Whizz-Kidz has workedwith procurement experts and processconsultants to develop an exceptionallyeffective procurement strategy.

Current NHS practices provide an illustrativecomparison. The NHS uses the samesuppliers that it has been using for manyyears. It engages with these suppliersusing framework agreements, as opposedto negotiating actively with suppliers andengendering competition. As a result,the NHS ends up purchasing the sameequipment year after year, and does soat inated prices. Whizz-Kidz, on the other

hand, can spend the same amount ofmoney but receive much more sophisticatedequipment, equipment which is suitedspecically for the young person whoneeds it.

There is a lot o competition around.Having had a short exposure to Whizz-Kidz,we can see what we are getting or our

buck. I better procurement is going to leadto good quality or the price, and i reducingwaiting times means you do not invest in

a chair which the child would haveoutgrown, this would be a much moreeective commission o resource.

HilaryCass,Paediatric Neurodisability Consultant Guysand St Thomas NHS Foundation Trust

How does Whizz-Kidzs procurementstrategy achieve these results?

Nowarehouses,yetfastaccesstostockWhizz-Kidz works with manufacturers,negotiating for consignment stock inexchange for providing substantial business.In this way, Whizz-Kidz does not pay to holdthe stock, but can access it immediately.

When we talk about Child in a Chair ina Day, the frst thing the NHS will sayto us is, How big is your warehouse?Well, we havent got a warehouse weare actually quite smart about what wedo. A lot o back work went into this, but

it means that we are getting productsat NHS prices or lower, that we are usingenhanced products, and that we aregetting that product when we need it.


Having access to sophisticated, bespokeequipment at low cost, with reducedor no waiting times, makes this facet ofWhizz-Kidzs procurement strategy integralto the objectives of providing the rightequipment, based on the right assessment,at the right time.

PlanningforpredictableequipmentspecicationsWhizz-Kidz creates a matrix of products,a formula which enables them to preparefor foreseeable equipment needs. Beforea child comes in for an assessment, hisor her information will be used to determinewhich product area will likely be in demand.A child under 5, for example, likely needsa powered chair with special dual controlsto enable the parent or carer to retain fullcontrol while the child gains condenceand gets used to navigation. Whizz-Kidztherapists have this information in advance,

and can have a chair with dual controlsaccessible by the time the family comesin for the assessment. Then during theassessment, the equipment is adjustedto t the child. This procedure allows manychildren to leave their initial assessmentswith their new equipment, fullling theWhizz-Kidz vision of Child in a Chairin a Day.

ChildrenandyoungpeoplereceivingdedicatedservicesChildren and young people at Whizz-Kidzreceive specialised attention from paediatrictherapists. These therapists are experts atunderstanding and predicting the specicneeds of young disabled people and

Samuelis13yearsoldandlivesathomewithhisparentsandbrotherinOxfordshire.SamuelhasMuscularDystrophywhichmeanshecantwalkveryfarorpropel

himselfinamanualwheelchairforlongdistances.

Samuel had a manual wheelchair butdue to his muscle weakness he wasreliant on others to push him around.He wanted the freedom to go out onhis own and visit his friends houses.

His own PCT would only offer him amanual chair and not a powered one,so Samuels parents came to Whizz-Kidz. After seeing one of Whizz-Kidzsspecialist therapists a brand newpowered wheelchair was ordered

for him. Samuel has now been ableto join the scouts and take part ina range of other activities.

Having the powered wheelchair hasgiven Samuel great independence.He goes into town with his mates,visits the cinema and is able to attendscouts and other clubs. He uses thestanding mode when he is at schoolto stretch his legs and participate inbadminton and other sport. Basicallyit has given him a new lease of life andhe loves using it.

SamuelsMum

SamuelIV.Procurementstrategy


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children, and can determine and articulateequipment specications accordingly.The procurement channels are designedto meet the equipment needs of youngwheelchair users, with a heavy focus ongetting the right mix of equipment which

can be congured in a way that allowstherapists to prescribe for the full rangeof mobility needs.

MotivatingmanufacturerstoprioritisewheelchairusersManufacturers who are encouraged to viewdisabled children and young people astheir customers are inspired to work hardto provide them with the best equipmentto suit their changing needs. In contrast,manufacturers who view the wheelchairservices as their customers will respondmechanically to the repetitive, high volumespecications those services request.

One o the things we wanted to do wasto improve our supply chain, and actuallyour wheelchair provision is more consumer-

led than it has ever been... What we wantto do is to make sure that the manuacturer

sees the customer as the person who isimportant to them. The NHS spends a loto money, but the manuacturers do not

have to work very hard.RuthOwen,Chief Executive of Whizz-Kidz

Preventingover-specicationofequipment

At some charities where grants providefunding for equipment, the relevant userassessment is actually provided througha commercial company. In these instances,

it is not unusual for a wheelchair to beover-specication, in other words, it wouldhave more bells and whistles than thatparticular user needs.

We have had to step in when equipmenthas been provided that has not been ft orpurpose. A piece o equipment that costs20,000 could literally be replaced withsomething much more appropriate oras little as 2,000.

RuthOwen,Chief Executive of Whizz-Kidz

It is important to ensure that the supplieris complying with the assessmentspecications to ensure that money is notwasted purchasing unnecessary equipment,that money will not later be wasted repairingunnecessarily sophisticated equipment, andto ensure that disabled young people areprovided with equipment which maximisestheir abilities and enables them to exercisetheir full range. Over-specication equipmentcan rob them of the opportunity to live to theboundaries of their physical potential.

When the NHS sees a product, theywant to know i it is compatible with whatthey have always had beore, so productdevelopment has not really moved on.The NHS has actually suppressedinnovation in the industry because theyjust keep buying the same old stock.IanLegrand,

Strategic Service Advisor, Whizz-Kidz


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ChildrenlumpedinwithadultsWhile Whizz-Kidz provides specialisedservices only for children and young people,most other services combine children andadult services, with a tendency to focus veryheavily on the adult service. Procurement

processes at these services, therefore, aredesigned mostly for the acquisition of highvolume adult chairs, leaving children toendure scaled-down versions inadequateto their needs. Childrens chairs requirecreative, proactive procurement processes.The unding o complex chairs is put undermore pressure by the merging in a singleannual budget o both high volume (usuallyadult) and bespoke chairs (more otenchildrens). Without contingency planningor complete needs, a shared budget maybe spent entirely on standard, relativelycheap, adult wheelchairs.

ProfessorTrishMorris-Thompson, Chief Nurse, NHS London

FragmentationofwheelchairservicesnationallyHaving 151 different wheelchair serviceswith 151 different people procuringequipment with 151 different budgets is notconducive to efciency.

There needs to be some kind o scale.There needs to be local access, butor the services around paediatric and

young people there is a limited amounto knowledge; you need to stop dilutingthat across 151 services. Most services

are around 5,000 wheelchair users, andin London around 3,000. The critical masswould probably be about 12,000 14,000;that would start giving you the scale

you need.


LackofprioritisationPaediatric wheelchair services have notbeen high on the agendas of many chiefexecutives and commissioners. It is notconsidered core business; it is such a smallpiece of the pie that it does not get the focus

and attention of national targets. Given thegravity of the circumstances of the 70,000children and young people whose needs arebeing neglected, and in light of the provenachievability of dramatic improvements,much more political pressure must beapplied to get paediatric mobility high onthe political agenda. Whizz-Kidz has beenactively lobbying to do just that.

V.Procurementchallenges

At the moment, lots o people are makingdecisions, services are too small and theyare putting a lot o cost into the service.I you take East London where we areworking, you have got three managersand three sets o stock. We have doneamply with one service providing serviceto three boroughs. That would loosenup a lot o investment.IanLegrand,Strategic Service Advisor, Whizz-Kidz


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Theexpertwitnesseshaveunanimouslydiscreditedtheeligibilitycriteriacurrentlyinusedisparatelythroughoutthecountry,criteriawhichcategoricallydenythousandsofchildrenandyoungpeopleaccessto

theequipmentandservicestheyneed.Therearecurrentlyapproximately70,000childrenandyoungpeopleinneed.Thatmeansthatthereare70,000mobility-impairedchildrenandyoungpeoplewhoareeitherusingthewrongequipmentforthem,orwhohavenotbeenprescribedanyequipment,duetocategoricalrestrictions.Theexpertwitnessesadamantlyagreedthatsuchrestrictionswereunnecessary,unreasonableandcounter-productivefromeveryperspective,includingfromacost-savingperspective.

In Tower Hamlets, in contrast, and nationallythrough Whizz-Kidz, the eligibility criteriaare such that no child or young person isrefused equipment if he or she is in need ofmobility aid. For all 151 services throughoutEngland, this is an achievable objective.

FailuresoftheCurrentEligibilityCriteriaAs currently applied, eligibility criteria setobstacles for mobility-impaired children andyoung people, rather than facilitating creativesolutions. The criteria are used to excludechildren from receiving services, insteadof helping children nd the right services

for them.

When rigid eligibility criteria are in place, theassessment of the childs needs is takenout of the hands of the expert therapist,and instead becomes a blind cost controlmeasure. The results can be devastating.Age-basedexclusionsIn many areas, the eligibility criteria prescribestrict age limitations. These limits can varysignicantly from service to service.

Denying young children powered mobilityIn some areas, powered mobility is deniedto any child under the age of 10 by theirlocal eligibility criteria, no matter what theclinical diagnosis. This means that for theindependence to get around the house,to go to school, to play outside, to play with

friends, to explore, and to learn, and todevelop as a child and as an individual andas a person, this child has to wait ten years.I you have to wait 10 years or a wheelchair,that is your childhood over. I think that

is a shocking indictment o services inthis country.

RuthOwen,Chief Executive of Whizz-Kidz

By the age of 10, a disabled child deniednecessary equipment will often havedeveloped a range of problems otherwisepotentially avoidable, including clinical,developmental, social and mental healthissues. Nevertheless, refusal to providecritical powered mobility is pandemic in theUK. In 2007, the Care Services ImprovementPartnership reported that of 12,164

wheelchairs issued to children in 2006/2007,98% were manual wheelchairs. The reportalso asserted that many of the chairs issuedwere scaled-down adult chairs that did notmeet the users needs, or allow independentuser activity.

Undermining age-appropriateindependence; risking learnedhelplessnessIn some areas, children under 5 are notprovided with wheelchairs at all, but areexpected to stay in their buggies to bepushed around by their parents or carers.

The NHS will often say it is out of concern

for the child getting hurt using a poweredchair, but this is inconsistent with thefundamental purpose of providing childrenwith mobility: to achieve age-appropriateindependence while meeting clinical needs.

You wouldnt send a fve-year old down theshops on their own anyway, so what weare saying is it needs to be appropriate.All the evidence says that the earlier youcan get children mobile, as close as youcan to their peers, then the better the

long-term outcomes.IanLegrand,Strategic Service Advisor, Whizz-Kidz

Research shows that children who aredenied early provision of appropriate mobilityequipment learn to become helpless.

Learned helplessness describes thepsychological condition of those who sufferextensive uncontrollable events, who thenconsequently maintain the false belief thatthey have no power to change or improvetheir circumstances. As a result, they give

up hope of gaining respect or advancement,and stop trying. They become helpless.

Young children pushed around in buggieswhile their peers play and interact on theplayground will see their young lives as outof their own control, literally pushed around.

These children quickly believe they haveno power over themselves, and that senseof disempowerment stays with them.Not only do buggies prevent a childfrom developing, but they do not provideproper postural support. Buggies were notdesigned for children to sit in for endless

hours, day after day. In this sense, buggiesare not safer for young children thanappropriate equipment, contrary to whatis often asserted by some NHS services.

I was surprised about how quickly by theage o 4 or 5 kids can have establishedlearned helplessness, whereas i you getthem mobile, even in the case o 13 month-old kids mobile in powered wheelchairs,

so that they are going to nursery and mixingwith their peer group, then they are just a

kid in a wheelchair.Get kids mobile, getthem into school, get them to college, getthem to be as independent as possible.

IanLegrand, Strategic Service Advisor,Whizz-Kidz

There is one young lad I saw who wason requent painkillers because o the

posture he was in, because all he neededwas what we call a tilt-in space chair

and, by providing that, was able to shithis own position, and he was comortable.He could come o painkillers. Now, surely,that makes economic sense, as he would

have needed urther surgery.JudithDavis, Head of Clinical andRegional Services, Whizz-Kidz

Being able to provide children with theequipment at the right time in their lives toenable them to be able to develop

VI.Eligibilitycriteria


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11

as their peers would develop is absolutelycrucial. [Not just with respect to] learned

helplessness, but also just the way in whichthe child develops and in which he or sheexplores the environment. There is going to

be so much learning development that child

is not going to be able to take on board.

When you are looking at things like theseating on wheelchairs, special seating,i you delay providing that, you are goingto have long-term repercussions in termso spinal deormity o children, which is

going to lead to surgeries and all sortso problems later on down the line.

Again, apart rom the personal discomortand pain, you have also got the costimplications o somebody going throughspinal surgery at the age o 11 or 12 yearsold, which could be prevented i they were

given the right equipment at the right age.

KateHallet,Senior Mobility Therapist, Whizz-Kidz

ExcludingotherchildrencategoricallyEligibility criteria are often used to excludechildren and young people from wheelchairservices based on the category of theirspecic disabilities, instead of determiningon a case-by-case basis what the bestoptions are for the child according to hisor her individual and clinical needs. Thesecriteria simply do not take into account thatthese childrens disabilities often do notprevent them from needing or beneting

from powered mobility.Children with visual impairmentsVisually-impaired people who can walk areable to learn to navigate their environmentsvery well because they become familiarwith those environments. It does not makesense to assume that visually and mobility-impaired people are any different, nor shouldthe mobility-impaired be deprived of thiscapability. That would be like saying a blindchild should not walk.

The NHS have eligibility criteria and[people with visual impairment] have topass a sight test to ensure they can drivea powered chair saely, but we have oundthat because when people are in their ownenvironment, they know their environmentvery well, they can actually be independent

within their environment by using apowered chair, but because they cannotpass that eye test within the NHS, thenthey are not eligible to have it.

JudithDavis,

Head of Clinical and Regional Services,Whizz-Kidz

Children with learning disabilitiesSimilarly, for learning-disabled children andyoung people, powered wheelchairs canbe useful and necessary tools. A learningdisability does not categorically rendera child unable to use a powered chair,and such a disability should not be usedas a cost control measure at great costto the child.The NHS has certainly shied away romproviding children with learning difculties

with powered wheelchairs. Now, i you havegot a child who has learning difcultieswho can walk, you dont sit them in acorner and say, You sit there becauseyou have learning difculties. You actuallymanage the environment, and it shouldbe no dierent or a child in a poweredwheelchair you manage the environment.Judith [Davis] and Kate [Hallet] have donea lot o work in schools, and training, andthe outcomes have been exceptional.IanLegrand,Strategic Service Advisor, Whizz-Kidz

Children with some mobilityMany children and young people are deniedthe appropriate equipment because theyhave some mobility.

A teenager who could potentially maybestruggle to walk across this room wouldnot be entitled to powered mobilityoutside. But i they want to become anactive part o their community and go outwith their mates, then actually they needpowered chairs. Just because they canstruggle across a room means they dontget a chair.

JudithDavis,Head of Clinical and Regional Services,Whizz-Kidz

LisaisfouryearsoldandlivesathomewithherparentsinOxfordshire.LisahasbeendiagnosedwithType2spinalmuscularatrophy.Spinalmuscularatrophyistypiedby

severemuscleweaknessandcanleadtomusclewastage.AsaresultofthisLisacannotwalkorstandonherownandrequiresadulthelptomoveeventheshortestofdistances.Unfortunately,LisawasnoteligibleforapoweredchairthroughherlocalPCTasshewassoyoung.

Lisa enjoys exploring her environmentand also likes to be outdoors as much aspossible. As early as 2 years of age Lisabegan to crave independent movement.Unfortunately, her condition meant thatshe could only shufe along the oor, and

sit with full support from both of her arms.Her parents began to worry about Lisadeveloping any learned helplessness andwanted to give her the chance to movearound on her own like other children.

Whizz-Kidz was able to provide Lisa witha powered wheelchair suitable for useindoors and outdoors. This chair givesLisa excellent and easy mobility, and evenat such a young age she has been ableto master the controls with ease.

Lisa


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Joshis9yearsoldandlivesathomeinaspeciallyadaptedbungalowwithhismum,dadandsisterinDevon.JoshhasType2spinalmuscularatrophywhichmeanshehas

ongoingbackproblemsandhastostayinawheelchair.

As Josh was growing up it wasevident that he would need a poweredwheelchair. Unfortunately, the local PCTdid not issue powered wheelchairs tochildren under 5 years old. When Joshwas 2 his family applied to Whizz-Kidzfor help getting him a poweredwheelchair. Whizz-Kidz issued Joshwith a powered wheelchair.

Josh says without his chair he would beunable to chase his sister and their dog

around outside and his teacher wouldhave to push him everywhere in school.

When Josh reached the age of 8 he wasgrowing out of his wheelchair. One ofWhizz-Kidz specialist therapists assessedJosh and decided another poweredwheelchair was needed. This one camewith the optional attachment of a footballbumper enabling Josh to play footballwith his family and friends.

Josh

It was tick boxes. Can she use herarms? Yes. Her legs? No. So havethe manual wheelchair, as this will giveher independence. But it didnt giveme independence as I was beingpushed around.

ArunimaMirsa,23 year-old; lawyer; graduate of CambridgeUniversity and beneciary of Whizz-Kidzsince age 14

ThePostcodeLotteryAcross the 151 different wheelchairservices, there are no coherent standardsoutlining what equipment and serviceswill be provided to whom. From service toservice, there is wide variability in what isprovided; some children have their needsmet adequately, some have their needsmet partially and some do not have their

needs met at a ll. This patchiness meansthere is a postcode lottery which not onlyseems patently unfair, but highlights the factthat the current system is not consistentlyneeds-driven. If children and young peopleare to be treated based on their needs, theremust be standards that are consistent forall families, and these standards must bebased on outcomes, not arbitrary rules.

It does not seem the budgetis transparent or patientsand amilies so it is verydifcult, or example, i you

have a school with 8 dierentwheelchair services eeding

into it. One amily cansay that their child is morelikely to receive a betterwheelchair, while anotherchild in the same classroom

is receiving a dierentservice and the qualityis not so good.CharlieFairhurst,Consultant Paediatrician for ChaileyServices, Sussex


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EfciencycanbevastlyimprovedHigh management and cost overheads aretypical within the NHS wheelchair services.Figures were cited for one primary care trustwhich had a budget of 450k, of which only50k went to purchasing equipment, and

the experts commented that this breakdownwas very average.

Efciency can be vastly improved by moreeffective commissioning, looking at howservices are managed, and focusingon outcomes.

I think there is a lot o lazy commissioning.No one has spent the time seeing what is

actually needed and ocused on outcomesrather than cost.IanLegrand, Strategic Service Advisor,Whizz-Kidz

A lot o it is about perormance monitoring,management and checking that theproviders who are commissioned aredelivering what is stated in the contract.Theres something about contracting andmaking sure weve got the right contractin place and making sure that what youare commissioning and contracting meetsany needs as identifed in the needsassessment, and where providers arenot perorming to specifcations alsoappropriate perormance managingi necessary, decommissioning andtendering i appropriate.

DavidHill,Commissioning Manager,NHS Tower Hamlets

How much fnance you have comes romhow well you manage the service in thefrst place.

DavidHill,Commissioning Manager,NHS Tower Hamlets

By streamlining management, focusingon outcomes rather than cost, improvingprocurement practices, encouragingcooperation and synergies across services,eliminating waiting times so that investmentis not made in chairs the child will have

outgrown by the time he or she receivesit, and ensuring wheelchairs are not over-specication, the efciencies modelled byWhizz-Kidz are achievable in all areas, andequipment and services will be available tomany more of the children who need them.

FalseeconomiesWhen children are not provided with theright equipment at the right time, thereare nancial costs down the road whicheclipse the cost of the equipment, justifyingpurchasing it from the outset, even beforeconsidering the dramatic human costs ofnot doing so. An outcome-driven approachto cost analysis must take into account thelonger-term costs of failing to meet thesechildrens longer-term needs.

We have provided a young lady with awheelchair. That has taken 100k out

o the education budget or classroomassistance. By investing now, there isquality o lie, but there are also savings

across the board, things like putting aseat riser on a chair brings the seat highup and could prevent the need to modiy

kitchens, and to modiy a kitchen will costyou 15-25k. We can put a riser on a chairor 800. I you start adding these numbersup, we see a lot o kids who are not gettingthrough the eligibility criteria, although whatthey need is a very, very simple piece oequipment. By providing something which

might cost about 800 or 1,000, the youngperson is getting what they need and there

are savings to be accrued elsewhere.IanLegrand,Strategic Service Advisor, Whizz-Kidz

The experts were in agreement on this point.Providing a riser on a chair or educationmeans they can access all areas o thenational curriculum without the need tobuy special tables, and alterations withinthe school, and sometimes carers. So, byjust investing, as Ian says, 800 or a riser,makes the lie o a young person so muchmore accessible and ulflled.JudithDavis,Head of Clinical and Regional Services,Whizz-Kidz

In contrast to the 800 riser, providingdesks of the right height costs approximately3,000 per child in mainstream education.A full-time classroom assistant can costover 12,000 per year (Connexions Direct,Careers Database starting salary).

I wasnt using my chair as much asI wanted to as I was scared o taking mypowered chair out, but my confdencehas risen, youve got to be confdent,know what you want to do and how toachieve this. The chair rom Whizz-Kidzhas helped me so much as it has a riseron it and helps me be at the same heightas my peers. Im so grateul as Im tryingto enjoy lie to the ull.KarlWoods,Whizz-Kidz Ambassador and volunteer

Moreover, without the right equipment,children can face painful and expensivesurgeries that otherwise might have beenavoided.

I think or me one case which sticksin my mind was a lad with Duchenes.It was quite a predictable prognosis, anda Duchenes spine curve can collapse veryquickly. I know the delay meant this childthen needed to have surgery. [With earlierprovision] he wouldnt have needed togo through surgical procedures or a spinaloperation which again has its own risksattached to it. I he could have been seen

and given the right seating, his spine wouldhave been protected and he wouldnt havegone that route.KateHallet,Senior Mobility Therapist, Whizz-Kidz

VII.Costisnotprohibitive:why?


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SmallchangescanmakeabigdifferenceEven something as simple as providingcorrect seating can prevent pressure sores.Pressure sores are very common amongwheelchair users who have incorrect

support. If not caught early, hospitalisationis needed. Many other complicationsfrom the sores can arise including, inextreme cases, septicaemia. On average,each pressure sore costs the NHS 4,000(taken from the national tariff) in medicalcare. Regardless of any nancial benets,the human costs alone justify investingin the small changes that would preventthe sores. One particular girl had to wait18 months for an appointment at her localNHS wheelchair service.

Small changes might cost nothing extra,and might be the result of a special attention

to detail by the staff, like a minor adjustmentor a piece of advice.

By being efcient, taking a longer-termperspective on cost, and focusing onsmall changes wherever possible, it isrealistic for wheelchair services to makea very big dif ference without substantialadditional investment.

Greater knowledge among stadoesnt require huge amounts o

fnance. I they are knowledgeableabout wheelchairs or children ithelps. It only takes one thing tomake a wheelchair really difcultto useJamieGreen,16 year-old Whizz-Kidz Ambassador

and sixth form student

This girl was in severe pain, severediscomort, and this was the only

seating that she had and she wasexpected to sit in this all day, everyday, yet this wasnt regarded as anurgent reerral or priority seating.KateHallet,Senior Mobility Therapist, Whizz-Kidz


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Inconclusion,reformofwheelchairservicesthroughoutEnglandisbothdesperatelynecessaryandeminentlyachievable.Forthechancetocontributeequallyinsociety,mobility-impairedchildrenandyoungpeople

needtoexperienceindependenceandbasiccomfortasearlyintheirlivesaspossible,andmaintainitconsistentlythroughouttheirdevelopment.Wheelchairservicesineveryareamustprovidechildrenandyoungpeoplewiththerightequipment,basedontherightassessment,attherighttime.ThisstandardofcarehasbeenprovenachievablebyWhizz-Kidzwithspecialisedpaediatricstaff,dedicationtochildrenandfamilies,holisticoutcome-drivenassessments,intelligentprocurementstrategies,

andasensiblelong-termapproachtocostmanagement.What do we do next? The All PartyParliamentary Group for PaediatricWheelchair Reform recommends:Prioritisation: Ensure that paediatricwheelchair reform is spotlighted and placedvery high on the political agenda. Applypolitical pressure to ensure that reformedpaediatric wheelchair services are now a toppriority within the wider NHS reform agenda.Articulate minimum standards:Articulate

uniform standards which prescribe nationallythe level of care that paediatric wheelchairservices provide and, very specically, theoutcomes that must be achieved. Thisspecic guidance should be accompaniedby follow-up performance monitoring andon-going dialogue with providers to ensurestandards are maintained.

Initial investment:Although efciency,procurement strategy and a sensiblelong-term approach to cost control arevery effective in making wheelchair reformachievable, there are some areas that willneed additional funds to institute these

necessary changes. For all the reasonsoutlined in this report, initial investmentin such improvements will prevent humanand societal costs down the road and,ultimately, lead to wider savings in healthand other public services.

Joint working across local and nationalgovernment departments: Considerationof collective costs of inadequate provision across government departments, theNHS and local authority budgets highlightsthe need for effective leadership andcoordinated action to reform wheelchairservices and achieve wider benets to

society, the government as a whole andbetter outcomes for disabled childrenand young people.

Roll out of proven service models:The Department of Health must workclosely with those organisations alreadyleading the way in effective procurement,assessment and delivery of wheelchairsto develop an implementation plan thatdelivers improvements to services acrossthe country and ensure that all disabledchildren and young people have accessto the right equipment at the right time.

VIII.ConclusionandRecommendations


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Asoneofitsmanycreativeinitiatives,Whizz-KidzhasrecentlylaunchedaninspiringcampaigncalledFastForward.Thegoalofthecampaignistoassembleapetitionurgingthegovernmenttoreformwheelchair

servicesfordisabledchildren.Whizz-Kidzhascreatedamicro-sitetohostthecampaign,allowingpeopletoaddtheirnamesandofferingthemtheopportunitytodescribetheirexperiences.Belowaresomeofthepersonalexperiencesthatpeoplehavesharedonthesite.ThesecommentsofferinsightintohowindividualfamiliesarepersonallyimpactedbythewheelchairservicesastheycurrentlyoperateintheUK,andhighlightthehumanargumentforinstitutingreformsassoonaspossible.

Name:AnonymousSupporteronJan22,2011Comment: Our son had terrible delaysregarding provision of his wheelchair inspite of him quickly losing the ability to walk.Coupled with a move of area (and told that

we had to start again at the beginning ofa waiting list in the new county) we waited...and waited... and waited and were stillwaiting nearly 2 years later at a pointwhen my son couldnt even weight bear!If it wasnt for charitable funding steppingin quite quickly providing my son witha proper indoor/outdoor powered chairwhich suited his needs perfectly, he wouldquickly have lost complete independence,condence and self-esteem ironically whenthis is a time when he should be gainingindependence from his parents.

Name:David,onJan20,2011Comment: Our local wheelchair centre gaveour daughter a manual chair they admittedshe was almost too big for, this after an11 month wait to get it. It was also cobbledtogether from parts of three wheelchairs.

It works and we use it, but the wheel andseat alignment means that its hard workfor her to push and doesnt encourageindependence.

Name:Olwen,onJan20,2011Comment: I have worked with youngsterswho need wheelchairs and have seen thebenets a good wheelchair can make tothe persons mobility and sociability butalso to their attention and communicationskills enabling them to get the most outof their education.

IX.Addendum:Some personal experiences

I always say that my wheelchairis my shoes. At the end o theday, its a pair o shoes to me and

it gives me the ability to lead anindependent lie. You wouldnt thinko sending a child to school without

any shoesRuthOwen,Chief Executive of Whizz-Kidz


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Name:Clare,onJan19,2011Comment: Childrens wheelchair servicesare in a poor state and urgently need reform,so that each child can get the chair that suitsthem as soon as possible, without missingout on important years of their life!

Name:Louise,onJan20,2011Comment: The NHS are supposed to makepeople better the wheelchair my friendsson was given by the NHS made him worse.One would expect them to be theexperts. My scepticism towards theNHS increases daily.

Name:Rebecca,onJan17,2011Comment: We waited 2.5 years for a ourdaughters wheelchair (she is 5 now) to thenbe given something to make do with it shakes and rattles her till she screams,but according to wheelchair services its all

they can offer. Our children are not all thesame! We dont all wear the same shoes;let our kids have what they need to live life!

Name:Rachel,onJan17,2011Comment: My 3 year-old son was givenan unsuitable wheelchair, one not designedfor a young, active user. It tipped forwardswith him in it. He landed face rst with hiswheelchair on top of him. The chair was thenreplaced with one which was too heavy forhim to self-propel. We complained tothe Chief Executive of the PCT and receiveda letter saying sometimes compromiseshave to be made. A choice between being

safe but unable to move independentlyor being in danger but mobile is not anacceptable compromise.

Name:LenaonJan17,2011Comment: Having the correct wheelchairis so important, my daughter is awheelchair user and one of my friendslittle boys has recently had a nasty accidentin an unsuitable wheelchair given by the

NHS. Our kids need the proper equipment,it needs to be individually tailored to meettheir needs and safe for them to use.Our kids deserve the access to live a fulllife, even though they have disabilitiesand providing the means for them to thriveis so important.

Name:Donna,onJan17,2011Comment: My sons NHS wheelchair weighsmore than him. Yet he was meant to selfpropel it.

Name:Tina,onJan17,2011Comment: We have previously waited

5 years for a condemned chair to bereplaced. Currently we are waiting 4 monthsfor a chair to be reviewed that is havingan impact on the breathing issues of ourterminally ill child and still no appointment.

We live in Lincolnshire now, but have hadproblems in Lancashire, Wiltshire and theIsle of Wight in the past.

ManymorepersonaltestimoniescanbereadontheWhizz-Kidzwebsite:http://www.whizz-kidz.org.uk/fastforward/fastforward-signatures


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My Wheelchair is My Shoes Report - APPG for Paediatric Wheelchair Reform - Embargoed 1200 Noon...

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Transcript of My Wheelchair is My Shoes Report - APPG for Paediatric Wheelchair Reform - Embargoed 1200 Noon...