After a lot of wrangling my advocate from the Muscular Dystrophy Campaign managed to get Gloucestershire Wheelchair Services to consider giving me a wheelchair voucher, this was turned down originally as my “needs may change within five years”, this was based purely the Occupational Therapist’s and Rehab Engineer’s opinions, they have no medical training and did not consult anyone at all when making the decision.
The lead nurse in charge of my care wrote a letter to Wheelchair Services explaining that going by historical evidence my needs were unlikely to change drastically within the next five years, although she is a registered nurse with 20 years experience, which included working at the National Star College, they refused to listen to her opinion as “it doesn’t agree with ours”. After this I asked my District Nurse, GP and specialist from the Royal Brompton Hospital to write letters backing me and my nurse up. They begrudgingly agreed to consider a voucher at this point, they really couldn’t ignore all those medical opinions, but insisted I undergo another two assessments, apparently it’s policy (although I haven’t seen it written down anywhere).
I agreed to the further assessments, although obviously I wasn’t happy about it, the first assessment would just be a repeat of past assessments, the second would assess my driving skills.
Today was the day of the first assessment, the Occupational Therapist seemed more competent than Frances (the previous OT who had assessed me) and didn’t keep deferring to the engineer like Frances did, he’d obviously been prompted on what wheelchair services wanted from the meeting but it didn’t compromise his professionalism, which was very pleasing.
I was placed in the TDX power chair they brought with them and poked, stretched and prodded for around 45 minutes while they made alterations, decided what additional accessories were needed and asked questions. I managed to push the fact that I would need a mini joystick, they were reluctant at first, especially the Rehab Engineer (these joysticks aren’t cheap), eventually the Rehab Engineer admitted he had provided someone else with muscular dystrophy the same joystick and that it worked very well. After this they sprung the indoor driving assessment on me, I was pretty exhausted (I have only been out of my bed a few times in the last two years, and then only for other assessments and to demo chairs), but I wasn’t going to let them beat me, so of course I aced it, the Occupational Therapist was notably impressed.
After returning to bed we discussed what would happen next, he was obviously quite keen for me to have the TDX, he said I could basically have it now for indoor use and at a later date I could be assessed for outdoor use, he then asked if I still wanted to pursue the voucher option, I of course said yes as the chair I’m after meets my needs far better than the TDX. Now come the catches, the chair for which I want the voucher must be limited to 4 mph, they will offer me a fixed value voucher of around £1300 and I must pass an outdoor driving assessment. I have not read any policies regarding this 4 mph limit, but okay, the outdoor assessment seems pointless until I have built up my stamina and am ready to use the chair outside, but okay I’ll try, the sticking point though is the vouchers value, both local Wheelchair policy and national wheelchair policy say that the vouchers value is dependent on the cost of the chair which the user is assessed as needing, the TDX costs at least £1725 (cost obtained from a previous FOI request), so I should be given that at least, this means more fighting but hopefully they will see sense soon, I’m getting closer to the £9000 I need for a Frontier X5 and don’t want the summer to pass me by (I’m also supposed to be meeting a very pretty girl for a drink once I get the chair, I really don’t want to miss out on that!).
Signing off for now ………………….