You know what is really messed up? The NHS will not provide lightweight active wheelchairs unless you are in accessible housing. It doesn’t matter if you have a condition like Ehlers Danlos Syndrome (or are on the hypermobility spectrum at all), and subluxate and dislocate your joints regularly. They will not budge. Nor will they give you a power chair unless you are in accessible housing either. I am on the waiting list for accessible housing.
My EDS specialist who is also a part of the NHS says my chair is too heavy and wheelchair services should make accommodations for us but he knows they don’t. Motability which is a rental scheme, can only be accessed with higher rate mobility PIP/DLA which I currently don’t have (oh and that 4-6 week waiting time for your review results is a joke by the way I’m on week 6 and nothing).
Whilst this reduces the rental cost of a power chair, you only get the chair for 3 years and spend more than the cost of the chair in renting it. It is NOT yours to keep at the end of it and you are limited in your choice of chair to what they provide. There is no option of a manual chair with power boost.
If I were to fundraise for the chair that would be perfect for me, the Department for Work and Pensions, the same people who are currently reviewing my Personal Independence Payments (PIP) and contacting my doctor to see if I am still medically unfit for work so I keep my Universal Credit, can take money from my benefits if I gather more than £6,000. Thankfully I don’t need that much.
However, many people need more money to get their chairs than I do. I am not the only one in this position. I, like many others am now left with the choice of risking going out on my own and facing multiple injuries that leave me bedridden for a week minimum, going out with a friend, or fundraising, my only choice is the latter. Apparently it doesn’t matter to the NHS or DWP bureaucrats that so many of us are left without the correct mobility aids to suit our needs. That we are left struggling and fighting for the support we need. Often unable to get it because they tie our hands as to how we can get them. And actually, whilst my anger is aimed at the bureaucrats it should be aimed at the politicians who are systematically taking money away from the disabled people who need it.
Guest blog written by Nat Le Brun
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