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

Manual wheelchair as long as it's used majority of the week, it's daft really it depends how you interpret the criteria. If someone wanted one for 2 hours for once a week they'd be ineligible. If someone needed one for 10 mins every day of the week they'd be eligible. Power chairs are prescribed for indoor use only, if you are unable to propel and would use a power chair indoors daily, then you'd be ok and they have the outdoor capabilities. People with progressive conditions tend to be accepted even if they can self propel a little bit.
We get a lot of referrals for children who have behavioural problems but were unable to issue as it can be deemed as a restraint.
I'd recommend looking at your local services criteria, this should there for public viewing.

I'm one of those people who self funded a wheelchair- and no, it's not because I'm faking it, wanted attention, am lazy or anything else I have been told. No-one forks out for high value mobility products unless they have a compelling reason.

Because I can technically walk indoors (albeit with a bloody zimmer frame at the moment grrrr) I wasn't eligible for any kind of powered mobility. I was offered a basic, small wheeled, pushed by someone else wheelchair by my local wheelchair services. The irony is that it would have made me MORE disabled.

As for HRM PIP, all that glitters isn't gold. Yes, you can get a wheelchair using HRM, however the choice is limited and some features are not available. I wouldn't get my current setup (which I was clinically assessed as needing btw) on a motability chair. However, my HRM is currently used for the motability vehicle parked on my drive. When you need a wheelchair vehicle, the down-payments are substantial. When you need a motability vehicle big enough to fit the family, the powerchair and the tail lift in, you're talking transit van sized. The down-payment on the vehicle was absolutely horrific (like 5 figures horrific) and we get to do it alllllll again in 3 years time. I would MUCH prefer to have a family vehicle that isn't a bloody van. Cold in the winter, like a greenhouse on wheels in the summer, loud and I am sure if it wasn't for us the local petrol station wouldn't do half as much business.

At least my NHS wheelchair services will provide buggy style wheelchairs for the under 3's, carer controls for powered wheelchairs and a powered wheelbase for those unable to push a manual wheelchair. You'll be waiting the best part of 2 years for an appointment though in the first place.

My child broke her leg aged 4 a couple of years ago and was given a little zimmer by physio. She could only manage in the house, and short distances slowly for a long time.

we had to rent a wheelchair for £15/week, and also lie to the Red Cross, as they wouldn’t rent it for an under 5yr old.
I couldn’t work for 8weeks, so income suddenly reduced. £15 a week was a big deal.

i am so grateful it was short term need for us, but I remember being shocked at something as basic as a wheelchair for a child unable to walk, but too big for a buggy, wasn’t covered on NHS.
also that a temporary blue badge wasn’t a thing.

I was aware of some of these, but not all by a long shot. It’s looking increasingly likely that I will need a wheelchair at some point in the future (unless there’s a new treatment developed that cures Parkinsons - I can hope for one at least!) I hadn’t realised there was such a difference in provision across Councils. That’s something I will look into, really useful information on here so thank you, Op.

@hjor20 thank you for satisfying my curiosity!
I agree the criteria can be somewhat arbitrary. I think it's so daft that powerchairs are indoor prescription only. One of the main reasons I need mine is due to pain and fatigue, which I was advised by the specialist not to "push through". In order not to push through, and also actually live my life, I need a powered wheelchair to be able to get anywhere out of the house. Self-propelling would take so much energy that it would only be a little better than walking (in that it would reduce risks from drop attacks/ gait issues, but I wouldn't be able to do it very far at all). And if I had to be pushed, that would mean I couldn't go anywhere by myself, which would drive me nuts.

Sorry to have been the bearer of bad news. Definitely look into your local criteria (just google area + wheelchair services), you never know, you might be really lucky. Or you might get in on a degenerative condition as someone mentioned upthread (not that that's much consolation when you have a degenerative condition, I realise!)

We self funded a SN pushchair for our eldest as although Wheelchair services took our referral we got 'lost' in the system 3 times. Dc was too big for any other pushchair and became almost housebound. Fuck knows what we'll do when he reaches the weight limit on the one we have.

For anyone self funding SN pushchairs have a look at https://www.specialneedsstrollers.co.uk/index.html they have brilliant customer care and when one showed a fault after 6 months of use they sent a new one within 24 hours.

DH got a wheelchair from NHS recently for outdoor use. He can walk around the house but with pain.
I am aware you can not get an NHS funded wheelchair unless your condition is fairly severe and that the wheelchairs are not top quality. But you can get a voucher for the value of an NHS wheelchair and top it up to a better one if you wish.
You get referred by your GP or consultant, not through Local Authority.

@CrocusSnowdrop 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

the PIP specialist from Citizen's Advice who helped me said that if you can do a thing but it wipes you out like that, and you can't do it reliably and repeatedly multiple times, then the answer is "no I can't". You need to have a stock answers for the assessor like "if I do it leaves me incapable of doing anything else the rest of the day so I cannot do it without endangering my health so the answer is no"

NoisySnail I'm glad for your DH (re the wheelchair, obviously, not the pain, pain sucks). I wish it was the same where I live.

If anyone knows anyone with a child under 5 needing a wheelchair, a Wizzybug might be an option (free loan scheme)
https://designability.org.uk/assistive-solutions/wizzybug/

@Newname197373 It is because it is temporary. It used to be free until fairly recently. Cuts have meant they now charge.

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"

I got my new manual chair at the start of the year from my local service, I alternate between crutches and my chair on bad days but I feel very lucky that the process was really easy for me, I'd had my previous chair 6 years so had one appointment where they did the measurements and talked me through my options, they gave me the info on the chair that they could provide which would meet my needs and also on other chairs where I could take a voucher of a certain amount and put it towards a privately bought chair however any repairs would then also need to be self funded.

My friend is a ful time wheelchair user and has previously took the money and topped it up to get the chair she wanted but as she lives under the next wheelchair services to me she is having a more difficult time as they are trying to push a chair which isn't entirely suitable for her.

its really sad that it's such a postcode lottery it shouldn't be at all

There are SN buggies with a higher weight limit. Some SN buggies are designed for teens and adults. When the time comes there are lots of charities you could look at who can sometimes fund or part fund SN buggies.

My friend gets hers provided by wheelchair services, they have been really good and proactive as needs changed. She's just been recommended for a powered chair (carer operated) to save his back and was told up to 12 weeks which I don't think is too bad, she has a carer propelled chair currently

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…

@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.

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!

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

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.

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.

@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.

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.