United Kingdom: Getting a Wheelchair on the NHS

After a recent bad relapse, I've come to the decision that I would like to try and apply for a wheelchair. I could of used one for a long time really, but pride gets in the way.

There are probably 100s or even 1000s things I've missed over the years I could of gone to if I'd had the courage to get one. I've always been terrified of getting out of the chair and receiving abuse.

I also have the fear that, the GP (I can rarely get the same GP in any sort of timely fashion these days) will just flat out deny it.

Does anyone have any experience with this they're willing to share, that might help go into the appointment more confident?

Thanks,
Matt

 

It might help to focus on describing what you can and can't do, and the consequences it has, both regarding symptoms without one and regarding your limitations in what you can't go out and do. Eg, if you have to stand more than X minutes, you typically get lightheaded. Or if you walk more than X meters, your legs get weak. Also the PEM aspect, if that factors in for you with walking.

I've never had negative reactions to getting in or out of the wheelchair. I'm usually pretty wobbly at that point anyhow, and I think people generally understand that there are reasons to use a wheelchair other than complete paralysis of the legs. Some large stores (Ikea, garden centers) have their own wheelchairs here, which implies a definite understanding that some people are able to walk short distances but not longer ones.

 

Thanks Trish, that's a really comprehensive reply.

I did actually get an OT assessment a few years back, I have everything else around the home, grab rails, perching stool, shower seat. Also I have a walking stick seat (though need a new one, it's a bit of a death trap) It's possible I could of got the wheelchair at the time, but the idiot in me was having none of it. I think I'll see what the GP says, else I'll have to buy one. Too many hospital appointments coming up to take on more stuff. Sometimes is worth the money to save the energy.

 

I would also advise answering every question that's put to you as if you were coping on a really bad day. The inflexible nature of the criteria for these sort of things really don't allow for the hour to hour fluctuation of our health. Dare I say it, you may even have to lie through your teeth a little bit, depending on your level of functionality. I've been thinking about doing the same lately, but I've been too ill for a wheelchair for the past 9 months or so, which seems like a bizarre thing to say but there you go.

On the plus side! When I've used a wheelchair to make long journeys across sprawling hospitals no one has ever batted an eyelid if I've got out of it. I understand this is largely a different environment, and this is easier said than done, but if someone wants to judge you, then fuck 'em. It's not their life, it's yours, and a huge amount of wheelchair users are able to take several steps. Try not to worry about that.

Friends who have got them have only ever said that they're sad that they put off getting one for so long due to stigma, and the freedom that it brings is fantastic. If you're at the stage where sitting up is fine then I see no reason not to go for it - one thing I've thought about is that if I improve a little this year I would use a wheelchair to simply go 5 minutes down the road to the local park, and spend my day lying down there instead of cooped up in a house. These tools are there to help us Best of luck with whatever you do.

 

I totally get that. I find sitting up straight both exhausting and painful. The majority of my time is spent in bed, lying back propped up on a few pillows. Otherwise it's gotta be the kind of chair/sofa I can do some quality slouching on. That concerns me too, I certainly can't see me being a regular user, but would like it for things like, family events, or going on trips with my carer.

 

This is what I came here to say.
I bought mine on eBay for £150 because I couldn't face the faff of going the NHS route at the time. But I will get my next one via the NHS.

I've never had so much as a raised eyebrow for using it or for getting up and walking up a step or to the car if I need to. Although once or twice in crowds someone has almost walked into me and looked horrified at their faux pas.

Life before wheelchair was pretty depressing and isolated, Chorlton (my w/chair) has meant I can stay out for longer and do more before the PoTS gets me. Here I am last night singing with my choir from my chair, there is no way I could do that without the chair:

 

Stigma and pride are an awful combination.

My daughter would not countenance one. We got one on loan from red cross for going away for a week and she did use it as she didn' t know anyone

Have had a couple if red cross loans and her mindset is changing - i think some of this is coming to terms with things.

We did turn up to s paediatric appointment in a wheelchair and this was formally noted - seems like we were indulging sickness behaviour. At the previous appointment we had to park mikes away and walk in- tachycardic episode later (disbelieved) , so we obviously didn't t want to repeat that.

We are now looking into wheelchairs. I think it may be a case of buying secondhand and doing a " pimp my ride" as we are not brave enough for a PIP application ( yet)

 

My first wheelchair was bought secondhand on the internet. I didn't want to spend much on it because at that stage I thought I wouldn't be needing it for long.

I was wrong. That was over 6 years ago and I still need one.

Last year I bought myself a new one. Smaller, lighter and much more comfortable for me. Easier for helpers to lift it and push it. I love it (when I'm not hating the fact I have to use it).

I paid for it myself. Didn't want the stress and hassle of trying to get one through the NDIS (which doesn't recognise ME as a permanent disability) or any other assistance schemes.

It's a life changer and I'd encourage anyone with ME to get one if they need one.

 

I would definitely ask whatever GP you see to be referred to an OT. I cannot praise this service highly enough. She has been wonderful at seeing the things I need before I do. Grab rails etc can really be quite life changing.

Personally, I would buy second hand, but that may be because I am stressed out from applying for benefits and don't want another hop to jump through.

I would hire one before you buy...ideally give yourself a week. You may find that an electronic one would be preferable.

We bought my mobility scooter and recliner off gumtree- both unbelievably cheap.

 

Thanks @hellytheelephant
I never thought of gumtree- i feel a search coming on ....

 

I have an NHS wheelchair, but only got it post PIP face to face. Though at the time I was waiting for an appointment. My previous wheelchair was "borrowed" in that the local ME group got the local council to donate most of the cost of it. I was the only person prepared to store it in my house, so it lived with me. When the group closed down (long story involving MEA local groups) nobody borrowed it any more, so I kind of acquired it.

When I went to my (transfer from DLA to) PIP face to face I asked for the assessor's report as soon as I could. When I saw how full of lies and misinformation it was I complained to Atos, my MP got involved too. While my MP sent me a copy of what she was told by the Parliamentary Atos person, she only got half the story. Here's a bit more, which might change your thoughts about buying your wheelchair or making the effort to go via NHS.

So unless your wheelchair is prescribed by a "health professional" apparently it doesn't count where PIP is concerned. After posting about that on an ME email List somebody replied that their daughter (transferring from DLA to PIP due to becoming 16) had similar problem. Have to say I wonder how widespread this is for ME patients. I think the HC "Professional", an OT, just put me on low rate for both sets of activities thinking I'd be pleased to get anything at all (I was 67 at the time of my assessment). Due to her assessment of me I lost my Motability car. So I was determined to go to Tribunal, where with a huge amount of help and also representation at Tribunal, from Fightback4justice I gained top rate for both sets of activities. For 10 years from original date too.

Sorry if this is muddled - please ask for clarification if you need to.

 

It was my OT that got me an NHS wheelchair a few years ago. It was a lot of faff, but going to the hospital to pick the size i needed etc. (I have a teenage sized one even though i’m 40 haha) wasn’t too bad of an experience!

Benefits only acknowledge nhs wheelchairs. If you buy it yourself it counts for nothing. You have to be able to show that a ‘professional’ okay’d it otherwise they look at you like you bought yourself a wheelchair to pander to your false illness beliefs, or at least that was my experience many years back

 

Still the case, I'm afraid. Can't remember whether it's in our PIP report or whether I saw it somewhere else, but it seems it still "doesn't count" unless it's been prescribed.

 

I'm pretty sure I remember writing a lot on my PIP application about why I don't have a wheelchair: reasons included that I have no one available to push a manual one, my house is not suitable for using one inside (I wrote I can never be more than 2.5 metres from at least one wall due the house's layout, and am usually only 1 metre from something I can lean against) and that I am not entitled to a self-propelled version because I do not need a hoist to get out of bed.

Neither of my PIP assessors enquired further about my decision to try and manage without one and it was recognised that I can't walk 'reliably and repeatedly' more than 20 metres.

 

I also specified how far to the bottom of the garden, I had read that they assume if you can go out in your garden you can walk 100 metres!

Edit: I'm going to cover about the need to stipulate all these types of things in your original written application form when I develop the ESA/UC and PIP/DLA threads I am working on.

 

I haven't found this to be the case, to be honest. I've used self-funded wheelchairs since 2001, and it was accepted without question on three DLA, one PIP, and four ESA applications. Assessors got various things wrong on the reports – some were a long way off-target, as usual! – but they all stated that I'm a wheelchair user.

Thinking about it, I've never actually been asked why I bought my own. Maybe because they realise it's very hard to get an NHS one when you have any ambulatory capacity at all; or that many people with fixed impairments such as paralysis also buy their own, so it's seen as pretty normal practice?

 

That’s really interesting! Must depend on the area.

I literally had an assessor make a comment about me choosing to use a wheelchair, 10 years ago with my bought one. Choosing to use one didn’t count as needing one.

I even got the snotty comment ‘and who told you to use one of those?’ (I was bedridden at the time pretty much)

Soon as one is prescribed by GP/hospital it is no longer questioned.

 

I'm going to re-read all the DWP PIP and ESA assessor's manuals as part of the prep for developing the (UK) benefits threads I've started (they are hundreds of pages long - it will take me some time).

But from memory, there was nothing in them stating or implying that a claimant's wheelchair (whether manual or self-propelled) should have been medically prescribed by the NHS (or a private healthcare provider) for them to be considered as 'needed' by the claimaint.

With regards to the ESA50 they do consider whether a claimant could hypothetically mobilise 50 metres with a manual wheelchair if they are not currently using one, but that is part of the HP assessing the claimant's physical ability to 'mobilise 50 metres, using aids if required', not about whether the claimant has or has not been prescribed the aid itself.

 

It's a bizarre attitude, isn't it.

I was struggling to read small print when I got to a certain age, so I needed a solution. I chose to buy some reading glasses, which meant I could read again – sorted!

Shortly after, I was struggling to walk even a few yards, so I needed a solution. I chose to buy a wheelchair, which meant I could carry on working – sorted!

I did eventually have to get an optometrist to prescribe some proper reading glasses, of course; similarly I had to go to someone who could build the wheelchair I needed, when the standard-issue ones no longer worked well. But I didn't need a medical professional to tell me I had a problem, and there was nothing illogical about either choice. It would have been far more illogical not to look for solutions.

Come to think of it, no-one told my 88-year-old Mum to get a mobility scooter. Her GP was delighted when she did, though, as it meant she could get out and socialise, do her own shopping, etc. I doubt any medical professional would have questioned it – it's just obvious that people are better off when they're not isolated and housebound due to their physical frailty. What's so different about people who're disabled due to illness rather than old age?