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

The NHS provided me with an outdoor chair 8 months ago

That's brilliant! Unfortunately I've met people who've only been allowed a powerchair designed for indoor use, so they have to carry an extra powerpack when out and about.
I also had to buy my own chair.

High rate motability is for this as you say though? It’s £71 a week which seems quite decent. I have to say it doesn’t affect me though so don’t know why it’s not considered enough.

I know my colleague spent 3.5 k on his chair! They can be so expensive if you want a lightweight one.

As a former wheelchair user this is shocking but but not surprising. Good luck fundraising. I had to self fund SN buggy for my child with DLA lower mobility needs, it was absolutely essential.

My friend needed one and they tried to deliver one of those huge ones that you can only pull backwards that are used on the hospital wards! It didn't even go through her front door so god knows what use they thought it would be!

Delivery man was most displeased to have to put it back on his vehicle!!

I guess it depends what other expenses you have as a disabled person, e.g. it might get swallowed up by extra heating and electric costs.
And yeah they are so ridiculously expensive! Mine was about 3k

Couple of other factors - might not be able to get a suitable chair on Motability; might need one and not qualify for enhanced rate. If you can only walk 50m (standard rate PIP mobility is 20m - 50m), your nearest bus stop/ shop is 500m away, and you're not allowed to drive, you're still stuck. This was near enough my situation when I started needing a wheelchair. You might also experience fatigue or increased pain as the day goes on, which means that whilst you can walk 20-50m in one go, if you do that repeatedly around work or taking the kids to the park, you can't function for the rest of the day

AnneElliott that must have been so frustrating for her! Not exactly going to help with independence

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.

That must be so depressing for you.
In the two trust areas I've lived in since using a wheelchair, one of the criteria is that you have to need it in your own home, regardless of how long you need it for.

As a wheelchair user I can tell you it barely makes a dent. The whole lot goes on my motability car, for which I had to find £8k up front as a down payment, that I will have to find again in four years when they take the car back. I had to buy my own chair. Or, actually my parents bought my chair, and loaned me the down payment for the car. Without them I'd have no independence.

I've just referred a 2yo for a chair and wheelchair services haven't said no... I think different areas commission different services so what you've said may be true for your area but not necessarily elsewhere. Some places will allow you to take your allowance and top up the payment to buy your own. That's not universal.

when I first started in the job I was told if someone can walk from their arm chair to the bathroom then they weren't eligible. The criteria has changed since and we are allowed to issue for outdoor use only dependent on usage. However that doesn't apply to power wheelchairs, they're a separate criteria on their own. I often wonder why I stay in the job role but with it being such a niche area they struggle to recruit. Where I am there's approximately 15-20k wheelchair users in the county and a team of 5 to assess and handover equipment. The backlog is horrendous.

I will have to buy my own indoor and outdoor chairs when the time comes.

I have 22 points out of 24 just on the Mobility section of PIP. As those with the 'PIP knowledge' will know, that's a lot of points for not much money, given the need for taxis to numerous medical appointments, extra heating, hot water, laundry, modified diet; etc; and the pain meds / emollients I'm told I need but have to buy myself now. My 4-weekly Enhanced Daily Care money is swallowed up by a carer / cleaner in Week 1 out of the 4.

Any adaptations I have to the house have been provided by the local council, for which I am grateful - grab rails, that kind of thing.

(Severe psoriatic arthritis, hospitalisation-level psoriasis, and gut disease for 40 years. Hearing impaired since birth.)

It's not a new thing, think my Mum had to borrow a wheelchair from someone when I needed one for a few months when I was a kid.

My experience of children needing a wheel chair is that they are carefully measured, and the chair is designed to their exact needs and specifications, and then takes 18 months to be delivered, and the kid spends their entire child hood in one chair after another that is over a year to small for them

JessicaBrassica That's really good to know that little kids are getting support in some areas. I just wish it were universal. Obviously I don't work in the field so I don't know exactly what's available in every trust - probably should've caveated with that in the OP! I know the Whizz Kidz charity campaign to make provision for young children equitable across the board. I mean, as a country I think we've got a problem if there has to be a charity dedicated to providing wheelchairs to disabled children, but that's a whole other issue.

This is not true in Scotland. They are not provided for temporary use but are provided for outdoor needs.

halfshutknife that's really good to know. My experience is only in England and Wales. Is it that if you need one only outside the house you can get one, or just that if you need one indoors and outdoors, you'll get one that can be used effectively outdoors?

@hjor20 because I'm nosy, what are the criteria to get one that's outdoor use only? (it's irrelevant to me bc I need a powerchair, so feel free to tell me to bore off)

Mum is in he late 80s, has had a severe stroke, unable to balance or walk, so needs a special chair, to enable her to move around - this is not provided by The NHS or The Council, she gets no money other than her pension (which goes on Care Home fees).
We have to pay £110 per month to rent a suitable chair from the equipment provision bit of The Council. If we did not pay, she would be 100% bed bound.
If we could not afford it, she would not get it .. it’s shocking really

Children under 3 are provided with specialist buggies in the area I work in.

The biggest gap in my experience as a children's physio is powered mobility for children. They have to take a 'driving test' to get one, without any chance to practice. Like an adult taking their driving test without having any lessons, the vast majority fail. Luckily there are charities which support with the WhizzyBug, but families have to be able to get to Bath for an assessment, which isn't always doable

The other huge issue is wait times for assessment to provision, easily a year in complex cases, leaving children in chairs which are unsuitable causing them pain, increased need for orthopaedic surgery and sometimes leaving them housebound.