I had another meeting with wheelchair services on Thursday, this time I invited my neuromuscular advisor along too, mainly so she could see how meetings like this work and how wheelchair services assess someone.
They brought in an Invacare TDX SP for me to sit in so they could take measurements and work out what adaptations would be needed, the chair seemed reasonable enough for a mid wheel drive chair, they drove it around my flat to check it fitted through doorways and could be used in all the rooms I needed access to. They did not test it outside which I do feel would have been a good idea.
During the meeting my holistic needs (social interaction etc.) were also discussed, the NHS Gloucestershire Wheelchair Service Guideline 4 Oct 2010 v2 state that the activities of daily living should also be considered, their reply to this was
Wheelchair services only provide wheelchairs to accommodate the activities of daily living within the home, outdoor chairs are provided purely as an extension of this and are pavement only vehicles.
This reply contradicts both the healthcare standards for NHS commissioned wheelchair services and HEALTH CARE STANDARDS FoR WHEELCHAIR SERVICES UNDER THE NHS, which say holistic needs should be considered, also the activities of daily living I have read, and that Nurses in the NHS must adhere to, include social activities and are most definitely not limited to activities inside your home, I was under the impression that the whole NHS must follow the same policies and guidelines in respect to medical needs, obviously wheelchair services have their own set of rules.
I will be putting in a complaint to the NHS about this as I feel social needs such as taking my dog for a walk, going to the park and sitting on the grass with friends and family, driving on uneven ground like a woodland path etc. are important, also driving in the road is often a necessity as pavements can be uneven, or when using dropped curbs to cross a road there may not be another dropped curb on the other side of the road for some distance, when this was mentioned it was suggested I “go round” any obstacles or hire a taxi, very helpful.
I had an email previously from Ms.Bush saying –
I am happy to discuss your activities of daily living at the visit, but these generally indicate essential activities within the home. The indoor/outdoor powered wheelchairs we are commissioned to provide are pavement vehicles and not all terrain or road use models, as we are meeting a clinical need for essential mobility. Many client often have NHS provision and alternatively funded equipment for sporting or extended leisure activities.
This seems to suggest that the NHS expect patients to buy their own chair in addition to the one provided by them, to me this seems a waste of valuable and limited resources for patients, charities and the NHS.
I was also told during the meeting that the rehab engineer had researched a lot of chairs including chairs by Otto Bock, Permobil, Sunrise Medical and Invacare and that this was the only one that met my reclining needs as well as seating needs, I find this highly improbable as my research found that the Invacare Storm 4, Permobil C350 Corpus, Quantum Athena (with tru balance seating) and Sunrise Medical Quickie F55 all met my reclining needs at least as well as the TDX and I can’t believe that none offered similar seating options, especially the Storm 4 which is by the same manufacturer. The engineer also had to ask the Invacare rep during the meeting whether the chair would move when reclined, now during my research I read the manuals for a lot of modern chairs and all move when reclined or tilted but for most the speed is reduced automatically, it seems very strange that any engineer dealing with wheelchairs wouldn’t know this, and even more so as this engineer had claimed to have done a lot of research prior to the meeting.
The meeting ended with me being left to decide whether to accept the TDX or not, I have emailed a few questions about the TDX model they will provide, once I have the answers, and probably after some negotiating, I will accept the chair, it’s decent enough for indoor use but not really any better than my old Storm XS, things don’t seem to come a long way with either wheelchair design or wheelchair services in fifteen years.