Daniel’s Fight for Wheelchair Services

By Daniel ( follow on twitter @DanielvsNHS or check out his blog)

This is my first post for Duchenne Campaigns, it is more about my personal crusade against wheelchair services (WCS) but hopefully will give others some insight into the poor service they provide.

In 1996 I was supplied with a Storm 6mph powered wheelchair by WCS Gloucestershire, it took just 4 months from the original assessment before it was delivered, it served me well over the years, with only minor modifications and repairs needed, I had been using the chair regularly up until about 2007, regularly going on walks of over four miles with my Goddaughter, going to parks, having days out etc. then unfortunately my panic attacks became more serious and I began using it less and less, by 2010 all I was really able to do was sit in it and sometimes go to the back garden.

In November 2010 I was reassed by Frances Beavis, OT from Gloucestershire WCS, first I was asked what I most needed in a chair, I stated that a chair that reclined as far possible was the most important thing, laying flat helps reduce my panic attacks and I also may need medication that can only be administered when I am rolled slightly onto my side in as flat a position as possible.  During the meeting I was told my old chair was unusable and a new chair was needed and that I also needed a moulded cushion so reclining wasn’t an option.

The fact is I don’t need a moulded cushion as was discovered in later meetings, also the chair worked fine so I refused to give it back, they also wanted me to return my manual chair, this woul have left me totally bed bound which is probably both illegal and against NHS core principles.  In March WCS insisted on servicing my chair, I’m not stupid so when the engineer said he would have to take the chair away I insisted on confirmation it would be returned, it was, but without the batteries making it unuseable, the reason given was that it would be too expensive to repair and that as I was in the process of applying for a new chair it wasn’t worth it.  The claims from WCS about the faults with the chair were pretty much rubbish and when I asked for further details of what tests were carried out I was ignored.  The only thing I agreed may be faulty were the batteries so I offered to replace them myself, they refused to return the battery boxes so I was unable to do this.

I have been offered two unsuitable chairs since, the first was basically the cheapest they offer, the second was slightly better but not as suitable as other models I showed them, I have filed an official complaint in which, amongst other things, I asked for better documentation for people applying for wheelchairs, everything I asked for was turned down and WCS were found to be at no fault.  Now I would have expected an official complaint to be handled by an independent party, this was not the case, Frances investigated and her manager signed it off.  Since then PALS have acted on my behalf but they are also kept waiting and not getting very far with negotiations.

In dealing with WCS I have argued with Frances using reports and legislation to back myself up and gotten nowhere, I have caught them in lies, have been treated like an idiot, have been ignored and even deceived and was sent a letter asking me to agree to wait up to a month for replies from them before I contacted them again, I obviously didn’t sign this agreement.

My conclusion is that despite reports from government bodies and other professionals WCS has actually become worse over the years, they make up their own rules, act independently from the rest of the NHS, ignore the fundamental principles of the NHS, they have basic procedures they apply to all patients and try to supply the cheapest chairs possible regardless of need, they ignore any advice given by other healthcare professionals and would never actively ask for anyobody elses opinion.

I have been waiting nearly a year for a new wheelchair and have been left bed bound for a majority of this time yet there is still no real light at the end of the tunnel, I would advise anyone dealing with wheelchair services to have an expert present at all meetings and get an advocate to act on your behalf during the process, never accept what they say without checking up the facts yourself and never accept the first chair they offer you, fight for what you need.