Page 5 | To make people aware of the reality of NHS wheelchair services?

CrocusSnowdrop · 2024-04-01T21:16:33+00:00

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

DoveOfPiss · 07/04/2024 11:09

In my Trust, we assess for and issue both heavy-duty buggies and self-propel or transit wheelchairs for children, depending on need and ability. This includes buggies for children with no danger awareness eg with autism or learning disabilities, when we also run safe walking sessions with parents. The idea is that the buggy is used as a safety measure and not a restraint. The wait for ours is probably max 2 weeks from assessment. I do feel we provide a good service to children and young people.
Our wheelchair service is a separate team.

Tahinii · 07/04/2024 11:12

PutOnYourRedShoesAndLetsDance · 07/04/2024 10:29

NHS here provide wheelchairs for outdoor use.. my sister had to get measured so it actually was fitted to her requirements.
My friends daughter age 3 also has one .
I had a stairlift fitted
Think you need more information.

It is area dependent. It’s a postcode lottery which is incredibly unfair.

SpanThatWorld · 07/04/2024 11:48

I was working with a blind child who needed a wheelchair and the wheelchair service refused to provide a self-propelled chair "because she's blind".
Blind children learn to walk safely. Ridiculous not to allow a wheelchair user to develop the same independence.

Spencer0220 · 07/04/2024 14:24

Fooshufflewickjbannanapants · 07/04/2024 07:57

My son (11) is an active wheelchair user because of cerebral palsy etc and can self propel on flat even floors we were lucky to get an actual lightweight chair (8.5ig) however we live in the hilliest of hilly land with extra hills, so he can't even propel in the playground as it's far too steep, we have just received charitable funding for a smoov attachment which will mean he can play in the playground independently for the very first time!

Great! I'm sure he will love this

Toddlerteaplease · 07/04/2024 14:26

We have babies and toddlers under 3 with specialist wheelchairs.

Icedlatteplease · 07/04/2024 14:31

Yeah what you say just isnt true for our area.

Also Motability isn't always cost effective.

Spencer0220 · 07/04/2024 14:32

SpanThatWorld · 07/04/2024 11:48

I was working with a blind child who needed a wheelchair and the wheelchair service refused to provide a self-propelled chair "because she's blind".
Blind children learn to walk safely. Ridiculous not to allow a wheelchair user to develop the same independence.

I think you might need some more context.

Self-propulsion of a wheelchair is nothing like walking. By not touching the ground, you lose a lot of sensory feedback. Not to mention, whilst learning, the crashes could be far more dangerous.

Spencer0220 · 07/04/2024 14:33

Icedlatteplease · 07/04/2024 14:31

Yeah what you say just isnt true for our area.

Also Motability isn't always cost effective.

Finally someone who agrees Motability isn't always the answer. That said, a lifeline for those who need it.

SpanThatWorld · 07/04/2024 14:38

Spencer0220 · 07/04/2024 14:32

I think you might need some more context.

Self-propulsion of a wheelchair is nothing like walking. By not touching the ground, you lose a lot of sensory feedback. Not to mention, whilst learning, the crashes could be far more dangerous.

Show quote history

It's entirely safe and normal for children with sight loss to learn to move their own wheelchairs around a known safe space such as their classroom or living room

Jux · 07/04/2024 14:54

I got a mobility scooter, much against my will tbh, but my neuro-psych finally persuaded me that I did actually need it and it would enhance my life; she was right.

I found a local shop selling reconditioned scooters so got it for 400 quid instead of 4000 which was what they cost at the time. That shop has gone.

The second scooter I got was through a local charity which provided reconditioned scooters.

Because the scooters, in both cases, were reconditioned, neither of them lasted that long and my third scooter was found by me surfing the web looking hard for somethingIcould afford. Finally found one for a reasonable price - I was so so lucky, it was in a charity shop attached to a care home and the scooter was barely used. Sadly someone stole it, but it was covered by ourcontents insurance and I got a brand new one within a couple of days. I'm still using it when I got out and about.

I am currently trying to find a lightweight small powerchair which I can use in the house..... if anyone's got any recommendations I'd be v grateful. I am self-funding because I have taken money out of my drawdown pension to pay for some essential house maintenance (our kitchen ceiling has literally fallen down!) and I took a bit extra as I know I'm heading towards indoor need. MS is a bastard.

I'm not using motability because we need the cash to pay bills, the house is old and freezing.

Toddlerteaplease · 07/04/2024 14:58

@Jux the MS trust give grants towards scooters and other equipment. Have you applied to them. Agree MS is a bastard!

Oldraver · 07/04/2024 15:00

My Dad got his original chair in Spain but had always self funded when he came back to England

Over the years he's spent a fortune and also had to have a new chair hoist each time he changes his car

Original poster

CrocusSnowdrop · 07/04/2024 18:10

PutOnYourRedShoesAndLetsDance · 07/04/2024 10:29

NHS here provide wheelchairs for outdoor use.. my sister had to get measured so it actually was fitted to her requirements.
My friends daughter age 3 also has one .
I had a stairlift fitted
Think you need more information.

I don't think I need more information, I think I need this to be the case everywhere, instead of the post code lottery! Very glad you've got what you need though, it's always good to hear of the system working

OP posts:

Original poster

CrocusSnowdrop · 07/04/2024 18:12

Jux · 07/04/2024 14:54

I got a mobility scooter, much against my will tbh, but my neuro-psych finally persuaded me that I did actually need it and it would enhance my life; she was right.

I found a local shop selling reconditioned scooters so got it for 400 quid instead of 4000 which was what they cost at the time. That shop has gone.

The second scooter I got was through a local charity which provided reconditioned scooters.

Because the scooters, in both cases, were reconditioned, neither of them lasted that long and my third scooter was found by me surfing the web looking hard for somethingIcould afford. Finally found one for a reasonable price - I was so so lucky, it was in a charity shop attached to a care home and the scooter was barely used. Sadly someone stole it, but it was covered by ourcontents insurance and I got a brand new one within a couple of days. I'm still using it when I got out and about.

I am currently trying to find a lightweight small powerchair which I can use in the house..... if anyone's got any recommendations I'd be v grateful. I am self-funding because I have taken money out of my drawdown pension to pay for some essential house maintenance (our kitchen ceiling has literally fallen down!) and I took a bit extra as I know I'm heading towards indoor need. MS is a bastard.

I'm not using motability because we need the cash to pay bills, the house is old and freezing.

Mine's a Freedomchair A08L and their range seems pretty good. You can get lighter ones though, the trade off being that their battery life is shorter and they're less comfortable over bumps. It was about 3k.

OP posts:

Original poster

CrocusSnowdrop · 07/04/2024 18:14

WiddlinDiddlin · 07/04/2024 05:09

My first chair via wheelchair services was a manual chair because, despite needing a powerchair and them agreeing that propelling a manual chair would do irreparable damage to my shoulders:

I wasn't using it in the house (I couldn't, it was too wide, too low and my house couldn't be adapted). Because my house is so small I was cruising round furniture (and falling a lot).

And I had to have a voucher because the NHS only offered two options for someone my size, a folding chair so heavy I could not self propel it at all and my DP couldn't push me in it, or an attendant pushed chair that he could push me in, but I'd never push myself in.

The voucher was for £400, because they're awarded on the price the chair would be procured for by the NHS. Not the price the chairs they offer would be sold to you, the general public for.

I had to purchase my own chair - nearly £3K. Because obviously I do not have the purchasing power and deals the NHS have.

5 years later it completely shagged my shoulders and no they won't get better, even if I'd had the surgery I should have had, they'd still not be ok for self propelling - and I qualified for a power chair - they are narrower (you sit over the wheels not between them) and I'd got my doorways widened (just two of them) to accomodate.

I had to wait over 18 months from referral back to WCS for various stupid reasons before I was seen and assessed as needing the chair I currently have - it has tilt in space and a swing away arm, but not the powered leg rests I am assessed as needing because ... my local trust do not do those. No matter what.

(My mates does, she's up North and her new chair took 9 weeks from referal to chair delivered, rises, tilts and powered legrests).

Motability options for chairs are extremely limited and the powerchairs/cars are an either/or thing. The manual chairs they offer are suitable for very few people and generally for brief trips (car to house/house to car) not full time use.

What you get varies from location to location - here (West Midlands) you need a chair for work/education or you will not get one. Needing to shop, socialise, get to appointments is not a valid part of the criteria. Yes, that means there are disabled people with a clinical need for a chair who do not have one and are housebound as a result.

Even once you get a chair, theres an odd assumption amongst the non-disabled, that this then resolves everything. It doesn't, for one thing the chair you get is highly unlikely to do ALL you need, the reality is you'd need several chairs to do the things most folks do. They also need maintaining and repairing, which if its an NHS chair is done for you but.. you could wait a week for a repair, then the chap turns up and he hasn't got the part he needs. Imagine a week, or two, unable to sit without pain, unable to go anywhere in your own home?!

The wrong chair is also sometimes (often!) worse than no chair at all - chairs are not all equal. Getting the wrong chair can cause absolute agony, can cause serious irreversible damage.

And before anyone thinks 'ah well this isn't my problem, I'm not disabled'.. you need to add 'yet' to the end of that thought. YOu're not disabled YET. Live long enough and you almost certainly will be.

Oof, only being allowed one for work/school is awful. Really ableist - if you can't "contribute to society" in our pre-ordained ways, you don't deserve to leave the house. Ugh.

OP posts:

Original poster

CrocusSnowdrop · 07/04/2024 18:15

Fooshufflewickjbannanapants · 07/04/2024 07:57

My son (11) is an active wheelchair user because of cerebral palsy etc and can self propel on flat even floors we were lucky to get an actual lightweight chair (8.5ig) however we live in the hilliest of hilly land with extra hills, so he can't even propel in the playground as it's far too steep, we have just received charitable funding for a smoov attachment which will mean he can play in the playground independently for the very first time!

I'm so excited for him!

OP posts:

CJDOT · 09/09/2025 20:02

JBOH2020 · 01/04/2024 22:35

I work for a wheelchair service, the criteria locally is long term need, anything 6 months or less has to be self purchased or hired. There's such little funding and doesn't help with a lot of services being privatised and the companies in it for profit. It's horrible to see, we see the service users and can see they need the equipment but criteria stops us from issuing.

I’m curious - have you direct experience of working for a private provider that is running a wheelchair service to back this statement?