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

Can I for once say that for people with complex chair needs the nhs in some areas at least comes through. My friends are in the next health area to us and they supply chair to her as needs have changed, alas now needs everything due to very high needs then her husband's back deteriorated and they within 2 weeks arranged for a power assist to be fitted to the chair to save him basically. Credit where credit is due!

Another friend has a very disabled dd now a teen, and again, different health area, they couldn't do enough for her, never had waits etc but she's a full time user, no capacity to make decisions, 24/7 care, hoists etc.

From my observations it seems the people being quite frankly fobbed off! are those more at the margins of need, those who can use basic chairs you can buy from mobility shops even Argos for a couple of hundred pounds but would prefer something more comfortable, and those who technically could self propel/be pushed but would prefer an electric chair (which i completely understand, I've pushed a manual chair for a relative and my shoulders still have issues despite them dying years ago)

We are still waiting for a wheelchair through Wheelchair Services for my DC who was assessed over 6 months ago. I Her eligibility criteria included that it had be used outside of the house at least three times a week. Currently hiring through the Red Cross who have told us we can only extend for another 12 weeks. TBH it’s so heavy we don’t get out as much as I’d like.

It’s just another area of the NHS that has let us down horribly.

I think it may be down to the individual trust. My DW has had none of the issues you mention OP. We have a chair that can be used both inside and outside and got it with no bother or hassels at all (other than a wait which is inevitable with the NHS today).

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!

This is the other thing. Generally there is no public understanding that self-propelling is a considerable athletic feat. Most of us don't have the shoulder strength without working very, very hard for it.

I do qualify for an NHS chair. Unfortunately it's so heavy and hard to manoeuvre that it mostly lives in the garage as a spare and I've self-funded the lighter one for the house and the folding one that goes in the car boot on a hoist.

So the main day to day benefit of having a funded chair is having the paperwork that showed I've been deemed eligible for one. Which is quite mad but you're absolutely right that there's a suspicion or stigma around only having a self funded chair. Doubly ridiculous when you consider the postcode lottery aspect.

The staff at the wheelchair service are fabulous and aware of the limitations of what they can provide.

Not true.

I use a wheelchair. I can't weight bare at all. I don't get the discount because my home is not at all specially adapted.

I'm lucky that I can live in a regular flat, ground floor and the council supplies equipment as needed.

Those of you on Motability you can ask to extend your lease when the three years are coming to an end. I've done it a couple of times.

OP

The discount you can get on council tax used to only apply to a house you had built an accessible bathroom on to. But if you live in a purpose built accessible home you didn't get the discount.

I've just found out that if you use a wheelchair in your home you can claim the discount.

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.

If you get a car on Motability, you can pay £100 & get a lightweight self-propelled wheelchair at the same time as your car.

They don't. My cancer kid desperately needed one whilst on treatment. Didn't get one even though she was too sick to walk at all, some days. Just so cruel. This quote also explains that when the chair is finally delivered it's too small.

I had excellent service from my old wheelchair service for 25 years.

I then moved area out of necessity. New area so dire. I made a formal complaint against the OT and a gdpr request to remove elements of my assessment from my records (which they did after a fight).

I then declined the follow up appointment, and will request to back when I feel I have a need. I'm hoping by then, this particular OT will have moved on.

Honestly, I don't know what is happening to the service.

Just making people aware that if you own your powerchair & wheelchair services state you do indeed require it the NHS can take ownership of it.

This makes them responsible for maintenance, breakdown, battery changes etc.

I'd brought a powerchair with a rise feature, as the NHS don't offer it & the wait in my area was dire.
My manual chair already had tilt in space & recline so I knew I'd qualify for that feature already.

The leg rest on my new powerchair didn't fit my needs so wheelchair services had something made especially for me. They also added a seat moulded to my body to keep me upright.

This process saves them money & I got a chair earlier than I would of & the features I needed.

Added bonus I could count it as DRE in my financial care assessment.

Oh & if you spot a bargain second hand chair like mine but it's in a horrid colour, you can get it wrapped like people do their cars.

I think in theory DS might have been able to get a disability pushchair through wheelchair services but in practice we were months away from seeing the paediatrician and physio who could have referred him when he reached the weight limit for his pushchair so I just bought one.

i didn't even bother with the NHS, i just bought my own.

I can walk around the house fine, its outside the house i have issues.. can barely make it around Tesco to pick meds up from the pharmacy atm without being in stupid levels of pain.

I am shocked it was so long. It took us about 16 weeks which seemed long enough.

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.

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. 😡

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.

@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.