Today we found out that our appeal for Fran’s e-motion wheels has been rejected. This despite a letter from Fran’s GP, OT and the Wheelchair Service themselves. The reason for this is that the criteria for ‘exceptionality’ has not been met. I won’t rehearse that exceptionality criteria here, but suffice to say that all the clinically qualified professionals who had written in support of Fran’s case were confident it did.
What this means is that a second appeal is needed. What is going to make the difference? More evidence, perhaps. Evidence of a clinical nature from professionals, yes? Well yes, except the appeals manager informed me that a personal letter from ‘the patient’ (i.e. a person) could sometimes make the difference. Sometimes it did, sometimes it didn’t. I suspect that the basis for the operation of the appeals panel is being made up as it goes along, dear reader.
Could I see the reasoning behind the denied appeal? No. Could Fran actually meet the panel to explain the difference it would make? No. In essence then, an inconsistent process that has no real hard and fast rules and which is shrouded in mystery. The next step? Another appeal. The next step after that? Another appeal. Both appeals heard by the same panel.
What does all of this mean? Further delay, anxiety and yet more money being spent. I’d suggest that if the wheels had been given to Fran at the outset money would have been saved, with the best clinical outcome already achieved in the judgement of the professionals who actually know Fran and have met her. In the mean time, Fran has to continue to have a wheelchair that is unsafe and causing discomfort (we discovered pressure sores over the weekend.)
I’m literally at my wits end with this. Should I crowd fund? I am very tempted, and we’d probably get the wheels much quicker that making subsequent appeal(s). But what about the next time wheels are needed? Just as with dear Theresa May, we don’t have a magic money tree! This is to say nothing of the embarrassment resort to crowdfunding would cause to two people who are attempting to cling on to pride and dignity, despite the effects of a totally demoralising and dehumanising process.
Appeal we will. Get it changed we will. I just hope the human cost of this is worth it, and that in highlighting the issues we’ve faced, change will happen too. It needs to. The system is broken and belongs on the same place as Fran’s wheelchair, the scrapheap! In the mean time, there is always the power chair, and the house adaptions, and car change on offer. Cost of this £40 000. Impact: Loss of independence. Shelf Life: 2 years. Cost of e-motion wheels: £5000. Impact: Independence preserved, health benefits through activity. Shelf life: 5 years.
I’ll leave you to decide which is the best option dear reader. I only hope I don’t have to carry out my threat of protest, using e-motion wheels to cover my modesty. Time will tell. Am I serious? You bet I am. Something has to give…