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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To think NHS wheelchairs should be prescribed according to clinical need?

28 replies

RosaMayBillinghurst · 18/01/2024 20:14

I have multiple disabilities. One of them may or may not eventually paralyse me; but I’ve gone through multiple reconstructive surgeries & months of hydrotherapy + years of physio (not counting what I do at home) to maintain an - admittedly ever-dwindling - ability to walk.

Because I walk around inside my home (& have a stairlift not a through-floor one) wheelchair services cannot provide the powerchair they assess me as needing. They also agree with all the HCPs involved in my care it is better for me to continue to walk as long as possible.

At my review today I was told that the rules have changed again since my last chair was provided a couple of years ago so despite the fact that my wheelchair might as well be a transport chair because I now cannot self-propel at all; I’m not eligible for a lightweight chair because, again, I can not only walk around inside my house, but I wouldn’t need a hoist to get into my chair.

Things are going to complex case review, but I’m not holding out much hope, frankly. Assuming it doesn’t go my way, I’m going to have to hope that I get a decent sum for my personal wheelchair budget; & that my needs don’t change any time soon. My DLA (yes, I’m still on that) already goes, as with so many other disabled people, on the higher cost of living involved in just being disabled: what Scope call the Disability Price Tag.

I’m - literally - painfully aware that the NHS can’t fund everything for everyone. Moreover, I understand the logic of having no flexibility at all: no room for accusations of unequal treatment etc. But is it really unreasonable to think you should be prescribed the mobility aid that meets your clinical needs? I’m not talking about picking the frame colour; but rather, allowing the professionals to make their assessment (with MDT input if necessary) & prescribe what people actually need, accepting they have the necessary skills & knowledge to make judgements where people don’t - as is the wont of humans - fit neatly into a set of tickbox categories.

I am very grateful to have an NHS wheelchair, please don’t misunderstand me: the specialist cushion alone is worth hundreds! But I can’t go out independently; I can’t even use the loo independently if I’m in hospital; & as the clinicians are frustrated by not being able to prescribe what people need, I thought I’d see what MN think.

OP posts:
RosaMayBillinghurst · 24/01/2024 10:27

I’m so sorry @orangeleopard - I recognise that cycle of being stuck; & of being grateful-but-frustrated. I’m due a call today with the outcome from the complex case meeting & I’m pretty sure the answer will be I have to go the personal wheelchair budget route; & I’m fully expecting to be told said budget will be about 50p & the chair £5000.

@Eachpeachpears I’m not sure if it’ll make things better or worse to say getting grants like that is like gathering hens teeth on a blue moon 😶 That said, do you have a physio who could sign the form? Or maybe your neurologist? Signing to a note explaining while you have a wheelchair atm it is unsuitable/unusable? As you say, it’s exhausting having [yet] another thing to deal with 😔

OP posts:
RosaMayBillinghurst · 24/01/2024 11:24

@Eachpeachpears when you’re well enough/if you have a helpful minion to do such things, check out Independence At Home from the list @Lougle posted: MS is one of the conditions they cover 😊

OP posts:
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