By Daniel (on twitter @DanielvsNHS or check out his blog
In the previous article I detailed my fight with Gloucestershire Wheelchair Services to get a suitable powered wheelchair and the fact that I had finally handed my fight to PALS, quite a lot has happened since then, but unfortunately I still have no new wheelchair and am confined to my bedroom.
First I’ll start with some good news, between the following four charities, The lions club Cheltenham, The Act Foundation, The Joseph Patrick Trust and Equipment for Independent living, I have been promised £3500 towards a new wheelchair, this is very generous especially in todays economic climate and I am greatly appreciative.
I have also managed to find the ideal chair to meet my needs, the chair is an ex-demonstration Frontier X5, at £9000 not the cheapest chair on the market and I doubt getting a brand new one would ever be possible. The chair has great suspension and large low pressure tires to cope with any bumps without jarring, it reclines practically flat which is essential for my particular medical needs and has a great, highly sensitive, joystick which allows for very small movements to control the chair.
Now back to Wheelchair Services, PALS managed to get them to agree to allowing me to apply for an INNF
, at first we thought this would be a good option, but on further investigation it became obvious that we would be turned down should we apply as I would have to prove my needs were ‘exceptional’ which they aren’t, Wheelchair Services should be able to provide a suitable chair for people with DMD.
After hitting that brick wall I was supplied with an advocate from the Muscular Dystrophy Campaign, they have a lot of experience fighting for people in similar situations and also have access to a large law firm should the need arise.
My advocate, David, started contacting Wheelchair Services at the end of October 2011, he has had a similar experience to PALS and myself so far, Wheelchair Services take a long time to reply to any emails, getting them on the phone is nearly impossible and they tend to be extremely stubborn.
David and I quickly decided that a wheelchair voucher would be my best option, I could then top that up with charity funding to get the best chair possible, I had already been turned down for a voucher when I had asked Frances, lead OT of Gloucestershire WCS, as my medical condition may deteriorate in the next five years. David was hopeful we could challenge this, he spent a long time playing phone tag with Frances and waiting for responses to emails, eventually he came to the conclusion that Frances would not budge or help in any way.
After talking with his colleagues he found the name of someone higher up in Gloucestershire NHS who might be able to help, Rosi Shepherd, it took him some time to get hold of her but she did seem more amenable at first, she contacted Wheelchair Services and came back with the arguments they had already given us. We countered with a letter from an RGN who has worked with me for several years and the fact that historically there is no evidence to suggest that my needs will change within five years (I had my previous chair for fourteen years), the reply was interesting, they changed tack suggesting I may improve within five years, they want an assessment by another wheelchair service and they would not consider my nurses letter “as it contradicts with our opinion”. Shortly after this email they said they would like to assess me for a new chair with a different seating system, I have agreed as I am still trying to cooperate with them, I have stipulated that I don’t want Frances involved and that I want to record the meeting, lets see if they are willing to be cooperative too.
I doubt the latest chair offered will be suitable, and even if it is their policy of on-pavement only use and artificially limiting a chairs speed to four miles per hour would put my safety at risk and restrict my independence. In the end I can’t see us getting anywhere unless we get a law firm involved, this will cause things to drag on even longer, but if I win it will hopefully help others in a similar situation too, I will not give up the fight and maybe, with a lot of luck, I will be able to go outside this Summer.