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

[RosaMayBillinghurst]

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.

Of course you're not unreasonable. Nhs is a shambles in so many ways. I literally had only one leg and was told I didn't qualify for a chair. Bought a cheap one to keep me going- I realise I am fortunate. Christ, on multiple occasions in past year have been told I can only keep one prosthetic limb at home at any time and told not to worry, if I needed the back up spare they'd keep it on a shelf for me and all I had to do was a 2.5hr round trip to get it! Fucking madness.

Do the Red Cross still do wheelchair loans for these sort of situations so you can at least get out and about while you're waiting to hear back? Do you have a disability social worker or disability advocate who can help you find another organisation that can get you a wheelchair? None of my mum's chairs ever came directly from the NHS, they all came from charities that her social worker or other support worker found for her.

It sounds very much like a computer says no type of thing, which I agree is really unhelpful, and I'm sorry you have to deal with this!

If you work, could an access to work grant help? Or possibly a charity like this? https://mobilitytrust.org.uk/

But I agree the NHS should be providing you with what you need!

It is indeed crap that if you can walk indoors you can't get an electric wheelchair to use outside. It takes away independence.

My SIL can barely walk, but she insists on doing it indoors as it's all on an even surface. Outdoors, she needs to be in a wheelchair, but as she can only use one side of her body, can't self propel. She was declined for an electric wheelchair so that she can go out by herself, instead, needs someone with her, she can't just nip to the shops.

Bonkers - Mumsnetter and Doctor in an area with many wheelchair users.

Sorry if this is ignorant op but if you get higher rate mobility does that not cover the cost of a wheelchair?

I worked in a school that was the local disability hub.

We had severely disabled teenagers in wheelchairs who couldn't walk.

I remember one of them, his mum had to fundraise nearly 20k towards his new wheelchair as the NHS only contributed a couple of K.

Many of the parents had paid for new wheelchairs as the kids were not entitled to new ones once they had outgrown them and the alternative was never leave their bed.

It shouldn't be like that, but apparently that is the way it is.

YANBU and its a postcode lottery too.

Here, I have a chair, despite being able to get up my stairs (no one elses and not repeatedly or all that safely) and transfer etc. I can't walk around the house but I can stand for 30 seconds ish.

Power chair provided by the NHS, replacing the manual chair (voucher, nothing they had met my needs) that knackered my shoulders to the point I can't self propel and have lost significant mobility...

I have a clinical need for powered leg rests (for those that don't know, theres manually adjustable leg rests but they won't really hold up the weight of your leg. Then theres power adjust ones that will) - but my area simply 'don't do them', end of discussion. Big limit on cushion style here too, I had to buy my own.

My mate at the other end of the country now has an NHS powerchair, powered leg rests, all sorts of cushions etc... because her area does do them.

She waited something like 6 months from referral to chair delivered.

I waited 12 months for the referral to be accepted and another 8 months to be seen and eventually recieve chair.

Whilst our conditions are different, our level of need is pretty similar.

People do assume that the NHS just lobs all sorts of adaptations and equipment at disabled people at the drop of the hat, and further, that that equipment in many cases puts the user on a level footing with an able bodied person. It really isn't true unfortunately!

Do you get PIP? If so you can get a powered wheelchair under the motability scheme.

Higher rate mobility is £71.00 a week. A power wheelchair, depending on needs, can cost thousands of pounds. Should OP have to save up for potentially more than a year in order to be able to leave the house independently?

And that assumes that the money isn't needed for anything else e.g. taxis etc!

The mobility trust are bloody useless. I’ve contacted them three or four times in the last year and all I get is an email back asking me to contact them when my PIP is up for a review

No you should be able to get them on the Motability scheme where people get cars.

From what the OP said I think she knows this but she needs the DLA payment for other things.

Motability do offer some powered chairs, its a very narrow range though (its not a 'one chair fits all' kinda deal) - and of course if you have a chair, then you can't have a car.

For power chair users this is often an issue as for many of us, our power chairs will not go in many vehicles or taxis (there are 0 taxis in my town that can take either of my power chairs! My friend has the same issue in her CITY!)...

If you don't want a car, it may be an option but it'll be most or all of your mobility payment leaving you none for public transport or taxis.

You can't have a car and a wheelchair on the scheme and they are mostly scooters not suitable power chairs.

I am shocked and angry at your experience, not only for you but also for those working in wheelchair services whose hands are so tied.

Sorry to be slow replying: I slept for ages after posting; then did write a reply which of course MN vanished into the ether as it sometimes does, because even websites have to amuse themselves somehow.

Sometimes I wonder if my autism means I’ve missed something everyone else just instinctively understands (possibly should have put that in OP) so it’s nice to know that, less the statistical improbability of everyone who’s agreed being autistics who’ve missed A Thing, this is indeed a bit shit.

@Angelik that’s awful, I’m so sorry 😔 I really hope they’ve now reassessed & you have a decent chair - well, NHS decent iykwim: it’s the cushion that can be the killer in a cheap chair, as I’m sure you know! As for holding your spare prosthetic leg hostage?! (If you don’t mind my asking, do you find The Last Leg has given people the impression you get limitless fancy legs from the NHS, much as people think it’s wheelchairs for all?)

@KaiserChefs The Red Cross, unfortunately, wouldn’t be able to provide a chair that meets my needs better - it would be worse, in fact, because it wouldn’t fit me as well & would be heavier.

@Postapocalypticcowgirl unfortunately I’m not well enough to work - but I might have to approach some of the smaller charities that offer grants if I have to go the personal wheelchair budget route. Getting money from the Mobility Trust is like winning the lottery because so many people can’t get the chairs they need & there aren’t many funding sources for what can be hugely expensive pieces of kit.

@AdditionalCharacter I’m so sorry about your SIL - as you say, it completely removes your independence when someone has to take you everywhere. Do you know if she’s tried/been offered a self-propelled chair with one-arm drive? You do need strength & some dexterity in the arm you use to push, but it might give her a little independence (I can just go nowhere with one arm instead of two 😂 - tried at my appointment so it’s in notes as proven unsuitable) - & even if she still needed someone with her most of the time she’d be able to eg look at stuff in shops/position & reposition herself at tables/take herself to the loo.

@olympicsrock it can’t be easy having patients who can’t get the mobility aids they need - especially if you’re the one who referred them to wheelchair services.

@Hankunamatata It’s not an unreasonable question, but as I said in my OP, my DLA already goes on the increased costs of living associated with being disabled. If I could put aside the entire mobility portion, it would take several years to save enough to pay for the chair (& I’d have to ask my father or my aunt to keep hold of the savings for me to avoid my ESA being cut for having savings).

@Octavia64 I think part of the reason for Whizz Kids is children outgrowing their NHS chairs before they’re due a new one/“too often”. Kids often have such specialised needs the cost of their chairs is staggering. It is a bit mad so many of them cost more than cars…

@WiddlinDiddlin it’s frustrating isn’t it - & I think it makes it feel even more frustrating because it’s a postcode lottery. I’ve a friend in a different part of the UK whose running joke about me staying with her for a bit to get the wheelchair I need starts to seem more & more like an actual good idea. I wonder if there’s a bit of the Paralympics effect at play - not just the weird “all disabled people should be elite athletes” thing, which makes less than no sense; but disabled people in the public eye usually have the ✨fancy✨ kit. Moreover, it’s not uncommon to see them loudly supporting the NHS (which I’ve no problem with, to be clear!!!) but without mentioning they had to fork out for their own wheelchair/prosthetic/home adaptations, meaning people assume everything is funded for everyone. (Yes home adaptations are funded by local Councils not the NHS, but people seem to assume it’s all linked up). Nobody’s under any obligation to share their personal circumstances with others, of course, & some of them will have NHS stuff that meet their needs - but it would surely help if people were clear that NHS underfunding meant they self-funded whatever & they wished everyone had the opportunity (etc etc).
I don’t have the taxi issue, at least, as I’m in London. But it means using my TaxiCard, which is pricey after Addison Lee “restructured” things 🤨 Cabbies are pretty awesome about prioritising jobs for TaxiCard users, especially if we need to get to/from hospital; & they always see me safely into the house, especially if it’s late/dark. But going to & from the hospital trust that manages my care? Probably £25 for either site. I usually get transport, but if I have to go to A&E or they don’t show up 🤷‍♀️

@RubyWinehouse as I said in my OP, I’m still in receipt of DLA, including Higher Rate Mobility, but cannot afford to redirect that money into leasing a powerchair through Motability. (I find it genuinely quite shocking it’s a lease scheme rather than allowing people to pay in instalments; but also not shocking, because not only is this the country where the UN said the government are breaching the human rights of the disabled population & the response was “nuh-uh”; but also the country where the courts thought it was perfectly reasonable not to boost legacy benefits during Covid because disabled people are used to grinding poverty).

@Soubriquet as I said earlier in my response, getting money from them is like winning the lottery: I will keep my fingers crossed for you, if they ever get round to accepting your PIP stuff 😕

@IMustDoMoreExercise yes, quite right - unfortunately it is as the Scope report I linked in my OP explains: costs associated with being disabled already use up [most of, obviously it varies] my DLA/PIP

@DragonFly98 the car bit wouldn’t be a problem for me, admittedly, but just the cost of the lease of the chair is prohibitive 😔

@Topofthemountain I felt so bad for the clinician my appointment was with: imagine going into a job to help people only to spend all day telling people you can’t help them?! Lots of people must get angry with her too, because she’s the one having to give them the news; & I’m sure people cry, because I felt a bit like I might. I wouldn’t be surprised if the job has an incredibly high burn-out rate because clinicians are so worn down by not being able to do their job because Computer Says No. Then being shouted at/feeling like they’ve made someone cry/feeling helpless at how helpless a vulnerable person feels 😔

@RosaMayBillinghurst she can't self propel with one arm sadly.

@AdditionalCharacter I feared it was unlikely, but thought it was worth mentioning as obviously the reason one-arm drive exists is lots of people do have the necessary strength & dexterity - & in some cases build it through using only one side for a time. I’ve a couple of friends who’ve needed to move to it after strokes (we are all very healthy/hale/hearty, yes 😄) so for them they also got some intensive training (as it were) as part of their rehab which makes a difference.

No, the mobility component of PIP/DLA can be used to lease a wheelchair instead of a car.

Absolutely awful reading this and other people's experiences.

@Boomer55 I did say in my OP that - as is not uncommon - I’m not able to afford to do that. At least, I didn’t specifically reference Motability, but I did say “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.” which I thought was sufficiently clear, but apologies if it wasn’t.

@purpleme12 sorry, I didn’t mean to upset you (or anyone else). I do genuinely consider myself very very fortunate to have an NHS wheelchair at all (with specialist cushion & back etc); & to have the NHS - underfunded & undermined as it is! - generally. I would just like to be able to leave my home independently without first having to win the lottery to fund the means to do so. Especially as I don’t play the lottery.

I’m a bit disappointed the 20% of voters who think it’s unreasonable to believe the NHS should provide wheelchairs in accordance with people’s clinical needs didn’t communicate why that is…

It's region specific. I got a funded power chair for a child to independently access school. Wheelchair services wanted home adaptations done to ensure he could get in and out of the house in it. We worked through the hoops and barriers to get him what he needed. It took time effort and a lot of swearing... But we got there!

This is a topic that frustrates me. I’m disabled and severely struggling and really am getting no help. I ‘can’ walk but not far as I’m in severe pain so I often use my wheelchair even when just nipping to the shop. Im very grateful that I have got given a self propelled wheelchair on the nhs, but I have stated my needs and why I need a lightweight one and they won’t help me as the one I’ve got is the lightest that the nhs funds. I’m a single parent, cannot work because of the pain so I don’t have funds to buy one myself. It means I have no independence, I physically cannot lift my wheelchair in and out of the car myself so when I do go out I have to be with someone. I barely leave my home because of being unable to do so and it’s impacting my mental health too. I’m only 26 and have struggled my entire life with my disability and getting the help and support I need/deserve and unfortunately no one listens.

yet I knew someone who got an occupational therapist in the same area as me and openly bragged that they lied to get this stuff funded. But they managed to get a nhs funded mattress among other things such as a cleaner; despite openly admitted they lied about their mental health to get it. Yet people who genuinely struggle have to continue struggling

I'm in a similar position op, although not as far down the mobility line as you from the sounds of it. I was assessed as qualifying for a manual chair to help outside of the house but my MS and Chronic pain means I can't self propel so the wheelchair is practically useless.
I was told there is a disability fund in my local area which can provide grants for things like power chairs but you need the backing of a medical professional which I don't have because they have ticked the box to say I have a wheelchair. It's exhausting and often makes my condition worse just thinking about it. I'm sorry you're going through this. The system sees us but only when it's convenient to them