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AIBU?

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Original poster

To make people aware of the reality of NHS wheelchair services?

117 replies

CrocusSnowdrop · 01/04/2024 22:16

Inspired by seeing mentions of self-funded wheelchairs on threads lately as an implied indicator of fakery (not a TAAT and not arguing with anyone).

So, did you know that most NHS trusts will only provide a wheelchair if you need it in the house? This means two things: 1, that if you can walk a few metres around the house but can't walk any distance, you don't get one; and 2, the chairs provided are often unsuitable for outdoor use. This might be because someone can self-propel in a manual wheelchair on smooth services indoors, but not far enough outside, or it might be a powerchair with a short battery life.

Yes, there is the Motability element of PIP which can be used for scooters or powerchairs, but not everybody can afford to spend that money in that way. And you need enhanced rate mobility to qualify, which means there's a gap for those who can walk 20m - 50m some of the time (which I can assure you is not far enough to actually do much, especially if you medically can't drive).

The NHS also doesn't provide wheelchairs for children under 3, even for those with a condition that means they will never walk, which means equipment to increase independence and social/ cognitive development has to be self-funded or provided by a charity.

So, YABU = I knew that, lots of wheelchair users have to buy their own/ gofundme/ apply for charity funding. YANBU = I assumed all the wheelchair users I see around get a suitable and appropriate chair for free on the NHS

OP posts:
PinkJellyCat2023 · 02/04/2024 00:06

I did know this from my own experience with my child, and friends experience with her child

NoisySnail · 02/04/2024 00:02

I have just checked. Yes our area you have to need a wheelchair to use indoors as well, but this does not have to be your house.

Original poster
CrocusSnowdrop · 02/04/2024 00:02

@NoisySnail I'm sure. I've read the criteria, it's very clear that I can't have a wheelchair if I don't need it in the house. And certainly not the foldable powerchair that I have. And I've only seen the consultant once anyway. He didn't offer to refer me, because we both knew it would be pointless.

OP posts:
NoisySnail · 02/04/2024 00:00

@CrocusSnowdrop Are you sure? Or is it that the consultant does not want to refer you?

Original poster
CrocusSnowdrop · 01/04/2024 23:58

NoisySnail · 01/04/2024 23:56

@CrocusSnowdrop Your consultant or GP has to refer you for an NHS wheelchair. They will not provide one if it is a temporary issue. We have rented one from St Johns when we needed one in the past.
So you may have been entitled to one although I understand you did not want to wait until you saw the consultant and got diagnosis.
DH can not access public transport without a wheelchair as he can not walk to a bus stop. So without the wheelchair he can not go anywhere.

I'm not entitled to one where I live, at any rate. Only if I needed it in the house, which I don't. And the consultant knows I don't, because he's seen me walk across the room. But I can't get to the bus stop either.... Such a post code lottery

OP posts:
NoisySnail · 01/04/2024 23:58

I like that NHS wheelchairs are through GP or consultant referral. So it is not dependent on ability to complete a form and use the right words.

NoisySnail · 01/04/2024 23:56

@CrocusSnowdrop Your consultant or GP has to refer you for an NHS wheelchair. They will not provide one if it is a temporary issue. We have rented one from St Johns when we needed one in the past.
So you may have been entitled to one although I understand you did not want to wait until you saw the consultant and got diagnosis.
DH can not access public transport without a wheelchair as he can not walk to a bus stop. So without the wheelchair he can not go anywhere.

Boredmum24 · 01/04/2024 23:53

As I was told if your answer to any questions on PIp are yes but. The correct answer is no.

Original poster
CrocusSnowdrop · 01/04/2024 23:50

@orangeleopard I'm so sorry. I can't drive so when I go out in the car I need someone to help me anyway, but I'm lucky to live centrally in a big city currently so I can access public transport and a lot of stuff is within rolling distance. Lack of independence due to insufficient funding is really tough.

OP posts:
Hankunamatata · 01/04/2024 23:50

There doesn't seem much scope once you get past 60 and need a wheel chair. You can't apply for pip if your past retirement age. There's attendance allowance. But there's a gap around being able to afford wheelchairs or mobility scooters

orangeleopard · 01/04/2024 23:48

I have a disability which makes me mainly housebound. I cannot do distances at all, and when I do I have to use my wheelchair. The problem is, I have the lightest one available on the nhs and it is NOT light in the slightest. I cannot carry it in and out of the car myself which means when I go out, I have to be with someone to enable them to do it for me. This means I have no independence and I’m very restricted as I cannot just ‘nip’ out, I have to plan to have someone to help me. I have had OT’s, social workers and all sorts ‘assess’ me and even though it’s noted I need a lightweight one, they state they can’t help me as I don’t have the finances to pay for one

SOWK · 01/04/2024 23:45

My mother became paraplegic following a botched NHS operation. She was discharged from hospital with a manual wheelchair. It quickly became apparent that she wasn’t well enough to use it and she needed a power chair due to the level of spinal damage but in her area they would only fund one basic manual chair every 5 years. We had to find £20k for a power chair and specialist seat pad etc. Hideous.

Original poster
CrocusSnowdrop · 01/04/2024 23:42

@NoisySnail I physically can't walk far either. Walking causes pain and fatigue, so if I walk too far, I then cannot get out of bed or think straight due to severe pain. I don't know how that wouldn't count as "can physically not walk far". I'm also at risk of drop attacks and my gait deteriorates the further I walk with my walker. As for my consultant - well he told me when I got diagnosed with my incurable neurological condition that I was not to push through pain and fatigue because it would make me worse. It took so long to get to that stage though that I'd already bought a wheelchair, because I refused to remain housebound while on the waiting lists for the diagnosis. I'm a student who wants a career which can't be wfh; the only way I could not push through pain and fatigue as instructed, and not buy my own wheelchair, would be to give up on all of that. I can't get to class without one. "Getting out and about" isn't just for fun (not that that isn't valid - disabled people need to leave the house for their mh as well), it's to study and work and generally participate in society.

OP posts:
Trundlers · 01/04/2024 23:36

Headfirstintothewild · 01/04/2024 23:28

In order to do an activity you have to be able to do it safely, to an acceptable standard, repeatedly, and in a reasonable time period. Only being able to walk 20-50m twice a week and only some weeks does not satisfy that, so you should not say you can walk 20-50m if you can’t actually do it safely, to an acceptable standard, repeatedly, in a reasonable time frame.

Show quote history

Yes! And that includes being in pain.

'So you can't even walk 20 metres? - 'NO, not without pain. Every step hurts. Every step carries a risk of losing my balance and falling.'

I wish more people knew the regulations like this.

NoisySnail · 01/04/2024 23:31

@CrocusSnowdrop DH was given the option of a power or manual chair and said he wanted manual.
I do not know though if you would get an NHS wheelchair where I live. You say you want one to get out and about as you have pain and fatigue. Does your consultant think you need a power wheelchair?
DH can physically not walk far. DH also has NHS physio to maximise his walking ability, so he can walk about the house - this causes constant pain but is important for his health and joints.

mitogoshi · 01/04/2024 23:28

@Newname197373

We just used the pushchair for dd aged 5, finally got rid just before her 7th birthday, she's autistic and it came in handy at times

Headfirstintothewild · 01/04/2024 23:28

NoisySnail · 01/04/2024 23:24

@Headfirstintothewild But you can, just not all the time. They ask how often you can do or not do an activity.

In order to do an activity you have to be able to do it safely, to an acceptable standard, repeatedly, and in a reasonable time period. Only being able to walk 20-50m twice a week and only some weeks does not satisfy that, so you should not say you can walk 20-50m if you can’t actually do it safely, to an acceptable standard, repeatedly, in a reasonable time frame.

Original poster
CrocusSnowdrop · 01/04/2024 23:26

CapitalKnockers · 01/04/2024 23:24

I hope everyone here who is outraged about the current situation aren't Tory voters. This is the result of decades of underfunding and it shouldn't be this way.

Oh don't worry I've never voted Tory and never will. In fact most of the years of Tory rule were voted in before I was even old enough to vote.

OP posts:
NoisySnail · 01/04/2024 23:25

@mitogoshi Same experience as us. DH was asked what kind of chair he wanted. He could have had a power one if he had asked for this.

CapitalKnockers · 01/04/2024 23:24

I hope everyone here who is outraged about the current situation aren't Tory voters. This is the result of decades of underfunding and it shouldn't be this way.

Original poster
CrocusSnowdrop · 01/04/2024 23:24

NoisySnail · 01/04/2024 23:23

@CrocusSnowdrop Thanks. He wanted a manual wheelchair that I can push and it was fairly easy for us to get. But he physically can not walk far. DH asked GP about it, he was referred and the referral was accepted. I thought there would be an assessment, but it was accepted on the information the GP provided.
I think when it is conditions like ME where the issue is fatigue, then it is not easy to get an NHS wheelchair and anyone I know where I live self funded.

Ah right, if you can push it it might be easier. I need to be able to go out alone as I have nobody to push me, so even a transport chair wouldn't have actually allowed me to get out and do anything.

OP posts:
NoisySnail · 01/04/2024 23:24

@Headfirstintothewild But you can, just not all the time. They ask how often you can do or not do an activity.

Original poster
CrocusSnowdrop · 01/04/2024 23:23

The voting is currently 50/50 on 101 votes, which I'm quite excited about because it means 50 people have learned something new about wheelchair users!

OP posts:
NoisySnail · 01/04/2024 23:23

@CrocusSnowdrop Thanks. He wanted a manual wheelchair that I can push and it was fairly easy for us to get. But he physically can not walk far. DH asked GP about it, he was referred and the referral was accepted. I thought there would be an assessment, but it was accepted on the information the GP provided.
I think when it is conditions like ME where the issue is fatigue, then it is not easy to get an NHS wheelchair and anyone I know where I live self funded.

Headfirstintothewild · 01/04/2024 23:23

CrocusSnowdrop · 01/04/2024 23:19

Yep. In fact I'm doing a PIP change of circumstances soon because I've realised that's the case. They caught me out by ringing up the next day while I was out and asking again if I could walk 20-50m, and I stupidly said yes, instead of "yes, but only twice a week max on a good week"

Show quote history

If you can only do something twice a week and only some weeks you actually can’t do the activity, so don’t say yes, but…