Case Study – Ben Morris
Background and Diagnosis
This case study describes three episodes of interaction with
Wheelchair Services and how the service has evolved and
improved over a period of 13 years.
Ben was diagnosed with Spinal Muscular Atrophy (SMA) in
October 2001. In February 2002 the severity of his condition
was confirmed as being Type II (Severe). SMA causes a
fundamental weakness to the muscles and as a result Ben is
unable to weight bear, sit un-aided, walk or move in any
significant way. His most powerful movement comes from
the thumb on his left hand, but even that is weak.
Cognitively, he has no difficulties with learning or
communication and he attends mainstream school, however
he does have an Education and Health Care Plan providing
him with support to access the school curriculum.
Following the confirmation of the diagnosis by the
neurologist we were told that we should start planning for
the future, this included getting him mobile…. Easier said
than done!
Encounter One
We were referred to the Oxford Centre for Enablement which has a specialist wheelchair service
that delivers complex wheelchairs for a variety of needs. Our first assessment in May 2002 was
encouraging and there was no doubt that they were able to help Ben and wanted to. They did ask
that before going any further they would need approval from our own Wheelchair Service to
proceed and secure funding; however, a second appointment was agreed to specify the wheelchair
base, seating and controls needed for Ben. This second appointment came and went whilst we got
in touch with Wheelchair Services, finding out who they were and where they were was the first
problem.
We soon learnt that despite all of the positive contributions from every service or department we
had encountered, Wheelchair Services were a different beast. Their approach was different in so
many ways, procedural and clinical in a black and white sort of way.
Case Study – Ben Morris
Having made contact about funding for a chair the simple response, after much chasing, eventually
was NO! There was no assessment, no meeting, just the basic application of criteria; that is to say
Ben was too young at 20 months old; he did not qualify for a wheelchair. This rejection was
questioned as illegal based on age discrimination, but rules are rules and nothing would budge
them. However we are made of sterner stuff and commenced “battle”.
Over the following twelve months we continued to communicate with the service, Ben’s needs
changed as he grew, at no point did we meet with anyone nor did we have any appointments or
assessments. Eventually we had to put together a 50 page dossier which included evidence from:
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The Neurologist
Our Paediatrician
Physiotherapy
Occupational Therapy
Oxford Centre for Enablement
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Legal argument and a review of
eligibility
Extracts from Hansard
Evidence from existing users of a similar
age and with the same condition
Our own testimony
All of this documentation was structured to help remove any ambiguity or argument, it also
included a direct request for a meeting with the Chief Executive of the then PCT as our anger and
frustration was reaching boiling point. Remarkably the service finally agreed to the provision of a
chair but requested Ben had an assessment of need, regardless of all of the fully qualified
documentation provided. An OT arrived following which they said they would provide the chair
through their own route and questioned why Oxford were involved.
We refused and stood our ground and got agreement for Ben’s chair to be delivered by Oxford,
which, 18 months after the first assessment it was. Ben started driving at 2 years 11 Months. The
chair was a power chair with modular seating that could be altered as he grew, it had tilt in space to
provide rest and comfort if he needed it and controls that he could use, there were also attendant
controls for our purposes. Ben was finally mobile. It only took 18 months!
Encounter Two
Our experience and knowledge developed during the five years following the issue of Ben’s first
chair. We learnt what wheelchairs were capable of and we learnt how maintenance worked. Ben’s
needs were also changing. From a social perspective he needed to be able to raise his seat, he also
needed to be able to access a PC for school purposes. In essence his chair needed to address more
than a medical need and it needed funding from more than one source.
After 5 years’ service there was no doubt that his existing chair was reaching the end of its life. Bits
were breaking frequently and everyone who saw it agreed that something had to be done.
Everyone except Wheelchair Services.
Case Study – Ben Morris
Once again the battle lines were drawn. With little or no real interaction from wheelchair services
we were forced to obtain a full assessment of medical need and a specification of other
requirements which truly illustrated the need for a fully functional chair which addressed Ben’s
holistic needs.
Ben’s posture had changed considerably and by this time he was in a moulded seating system
which gave him full postural support, this added to the complexity of his needs. A justification
document with evidence and support from Education and Social Care was prepared along with a
commitment to fund the additional technical requirements enabling the funding of a new chair to
be agreed.
Again the process of obtaining approval was not straight forward. We eventually established good
communications with the Wheelchair Services manager who was clearly a lot more enlightened and
wanted to provide a better service. However it was evident that the manager had constraints being
imposed by commissioners who seemed to be more interested in managing the funds rather than
specifying a great service.
On the day of receipt of the new chair Ben drove into the Oxford Centre for Enablement with one of
the wheels literally falling off his old chair. The new chair was just in time, the old chair was waved
goodbye with a tear; the chair that had served Ben so well was a friend and was part of his identity
but the new one was gratefully received.
Shortly afterwards we attended a football match at Wembley. When the National Anthem was
played the stadium promptly stood up to acknowledge it, and, with his new riser in place so did
Ben. His self-esteem soared.
Encounter Three
After eleven years of using a chair Ben and ourselves were totally conversant with how the
wheelchair provision mechanism worked. With good communication and overall better integrated
services working beyond their own boundaries the delivery of Ben’s third chair was remarkably
easy.
It was not hard to work with all agencies as it was clear that once again the base of Ben’s chair was
running out of steam. With approval from wheelchair services and agreement of need from Social
Care and Education, the Oxford Centre for Enablement were able to plan, assess, specify and
deliver the right wheelchair in a reasonable timescale to suit everyone.
Case Study – Ben Morris
We assessed more than one wheelchair base in the home as well as ensuring it suited transport and
school. The controller was reviewed to ensure it suited Ben’s increasing technical demands and
funding was agreed and managed internally with little intervention from ourselves.
Ben’s chair has:
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Variable speed and a light touch joystick he can use with ease
A controller that can manage all of his needs
o Full postural support
o Drive at variable speed
o Tilt in Space
o Rise and Fall
o An effective stowable tray
o Access to environmental controls
o Attendant controls
o Ability to interact with up to 8 bluetooth devices including PCs and Gaming machines
o An effective spare manual chair which is used should the electric chair breakdown
A recent trip to Switzerland demonstrated the flexibility of the wheelchair and the ability event to
transport it on an aircraft.
Conclusion
Over the years there is no doubt now that the service we get has improved into that which is
needed. However we have had to learn through experience how the system works and how to
work the system.
There is clear evidence that agencies can share funding resources and can communicate needs to
develop a fully holistic solution for the service user.
Can this be replicated so that more people can get the Right Chair at the Right Time?