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

[CrocusSnowdrop]

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

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.

@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

@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.

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 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.

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.

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

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 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.

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

@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 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.

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

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

@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.

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.

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

Actually that's not quite true now I've checked the letter (it's been a while). He recommended a referral to wheelchair services to my GP, but my GP couldn't follow up on it because I didn't meet the criteria. He also put in a referral for neurophysio, but only to show that referrals for the service for my condition existed, because as he correctly informed me, the neurophysio service in my area had a strict list of conditions and mine wasn't on it.

@NoisySnail

The NHS in this area offers just below £200 for a standard wheelchair if you opt for the voucher. My powerchair didn't leave me much change from 10k. Even if the NHS assess you as needing a lightweight self propel chair, at best they're going to give you something like the Action 4 in this area. Even then, the difference between an A4 and a made to measure, lightweight active user chair is a few thousand, you're still out of pocket and then some. Wheelchair services in this area have a) been subcontracted out and b) are truly shocking.

Unfortunately as you don't get tilt in space active user chairs (or if you know of any, please let me know!) then it's power all the way for me.

Just to add, I don't resent forking out what I did for a second. Far from being restricting, my chair has given me liberty and freedom back at a time when I had very little of both. Without my chair I am virtually housebound. With my chair I can be a parent again. I love it, the kids love it, the husband loves it because I'm not permanently exhausted, in pain, snappy and reliant on him for every single little thing any more and my employer loves it because I can actually function at work in a way I couldn't beforehand.

If anyone is reading this and is in 2 minds about whether to go for a chair or not then I would say 100% go for it. Finding the right mobility device for you will be absolutely transformative. Honestly.

I had a wheelchair from Wheelchair Services when I had major surgery and wasn’t allowed to weight bear for 6 months. I was already unable to walk unaided, so it was useful if we went on days out or if I was having a particularly bad day, but they came and took it away after about 4 years. I kept arguing that I still needed it , but they wouldn’t have it. It’s utterly disgusting.

Fortunately, DH works so we can afford to buy a wheelchair, so that’s what we did, however after so many years of using crutches my shoulders are knackered and I can’t propel it anymore.

DH was in the RAF, and they gave him a very short notice deployment that we couldn’t do because I was due surgery, so we had to get welfare etc involved. We were chatting about things, and they suggested we speak to the RAF Benevolent Fund about helping us buy a mobility scooter. They very kindly paid half and we paid the rest. I know a lady who had a wheelchair bought by SSAFA and another who had one bought by the Army Benevolent Fund.

Provisions for disabled people are dire. I use my PIP to fund a car. I see lots of people, in groups I’m in, say they’re stuck because they’ve got a car but desperately need a scooter or a chair but can’t afford it. It’s just horrendous. You can lease a lightweight chair with your car, but if you need anything powered, it’s just tough. 😡

I hadn't even thought through the fact that if you have to spend Motability on an (adaptive) car then you can't also have a powerchair or scooter, so thanks to PPs who've shared that. People won't tend to realise how expensive a WAV is either.

@pinkhorsesarentunicorns I agree! I love my wheelchair, it's allowed me to go back to uni, to get to church and socialise, and it means I can leave the house without being driven to the door and then sitting in one spot the whole time. It's actually allowed me to exercise more too, because I can get to the swimming pool.

I have an NHS Powerchair but it wasn't an easy get. I had to jump through hoops and lots of assessments and only got it because I needed it indoors and can't independently use a manual chair. It was a long process between 3/4 years. People don't realise. I was renting one for a year or two out of desperation.

Yep - it seems it's often a nightmare even for people who do qualify! 3 or 4 years is such a long time to be housebound for, it must be so lonely and it's also a big career gap if that's relevant (which it often is - many of us wheelchair users can work if we're actually given the right equipment)