When You're a 'Zebra' Trying to Get a Wheelchair in the U.K.

Each quote is from a different member of a social media community, used with consent.

I went for my first Wheelchair Services (WCS) assessment recently, nearly four years after having to start using one. Back then, I didn’t even meet the criteria for an assessment, nevermind the fact that sitting to move was safer, helped me to think more clearly and conserved my precious energy. I found that out by borrowing one in a supermarket after a bad episode. I confirmed it by borrowing another to wheel around the Natural History Museum.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

I’m so glad that I bought that first chair then: a sparkly blue Enigma Spirit, good value but still a fortune for someone too ill to work, with no proper diagnosis and no luck with a fickle, austere UK benefits system. £250. A fortune but worth it.

My chair (which I named Skylark) took me to lavender gardens in Yorkshire and on the bus to a big shopping center day out with my mum and daughter. It took me to restaurants and lately, to see the Harry Potter studio tour. I even learned some wand choreography whilst sitting in it.

The most important lessons have been ones of renewed confidence, of self-advocacy and of listening to my body. On the other hand, it has also taught me that an ill-fitting chair can cause as many problems as it solves.

It’s heavy, so I can’t self-propel for more than an hour’s leisurely browse around shops. As for pavements, forget it. I tried the school run in it once and ended up using it as a rollator half the time. By the end I was being pushed by a sympathetic mum. It is too wide and doesn’t fit into my kitchen and only barely through my lounge door. The seat isn’t angled and has a 1″ eggbox foam cushion. This aggravates my damaged, curved lower spine and causes back ache in the chair and continued muscle spasms after having used it. The footplates stick out too far, and the fixed push-handles are too low for my tall husband. The cool design and nice color don’t make up for its flaws.

So, I plucked up the courage and asked for a referral to WCS. My GP was surprised, muttering that you don’t find many hypermobile people using wheelchairs (yes, I’ve found general practitioners desperately need educating when it comes to the hypermobility spectrum disorders) but to give him credit, he referred me on.

Not a month later, I had a phone call saying their technician was in the area tomorrow and to let them know a convenient time to deliver my chair. I was stunned. “I haven’t even been assessed yet!” I sputtered. Thankfully, the person on the other end promptly made an appointment and I didn’t have to wait long. We’ll come back to my story.

I had asked around on various related social forums about what to expect (I’m an Aspie, I like to be prepared). What I have been told since my appointment has made me sad and angry at the same time. I asked others if their needs had been met by Wheelchair Services. Here are a few of their replies:

“I had to fundraise for my power chair. I have Marfan syndrome and various secondary conditions. The ‘able to walk inside my home rule a few meters’ from room to room was the main barrier, but even if they had agreed to help me I would only be able to accept a voucher because my local area doesn’t supply specialist enough power chairs for my needs.”

“I think it depends very much on your local wheelchair services’ interpretation of the eligibility criteria. Currently challenging mine.”

“No help, got my own with loan against the car and because I’m on disability I borrowed £2,000 for the chair and I’m paying back nearly £4,500 ! It’s disgusting I can’t leave the house without my chair. No-one cares if I’m stuck looking at 4 walls everyday making things worse, no help at all. My sanity is my [social media] groups. Still, at least I can get to doctors’ appointments.”

“I can’t self propel at all with my shoulders as they are. I can’t walk at all. Before my power chair I was entirely dependent on my husband; now I have a lot more freedom. There is a 15 year waiting list for a power chair from WCS here. I just couldn’t bear the thought of 15 years of such pain.”

“I have hEDS. When I started using a wheelchair 11 years ago, my GP told me that he couldn’t refer me to WCS because I can walk. Fortunately a letter from my GP stating that I didn’t meet the WCS criteria meant I could get referred to Access to Work who funded my lightweight rigid chair. I know from friends that since then AtW have tightened their criteria and you have to have an assessment from WCS stating they can’t meet your work needs.”

“I contacted WCS seven years ago requesting a power chair to use out of the house (I manage with crutches around my small house, but they said they don’t issue transportable chairs or chairs to people who are part time users.I purchased my own mobility scooter (less expensive than a power chair). However, the seating position is giving me problems (constantly leaning forward to reach the handles, and also dislocating my thumb using the power). [When] I contacted WCS again a few months ago about advice for a manual chair, I was directed to my nearest mobility shop.

I have purchased a used lightweight manual wheelchair, however it was not the right size. I then purchased another used chair but it does not have all of the features I would like i.e. handles for when my shoulders are loose and I can no longer propel. Getting a perfect fit chair from the used market is impossible, but I can’t afford to purchase a new chair. We had to move house because our previous house had too many internal steps and steps at both the front and back door which I couldn’t manage even with crutches. We didn’t receive any help.”

“I have hEDS and had to self fund my chair (a Quickie Neon 2 – active folding chair). Couldn’t afford to pay for it upfront, so I have a payment plan.”

I was taken to the assessment center 40 miles away, by ambulance transport since I don’t drive and there was no one to give me a lift. The chap driving was very amiable. I rode in my blue Skylark, my purple Smartcrutches alongside, legs wrapped up in braces. The appointment couldn’t have been more than half an hour. The physiotherapist doing the assessment was new and did at one point have to duck out to check my eligibility with his manager. I was interviewed, measured and then he fetched the chair they were able to offer.

The thing he brought through was not at all what I’d discussed. It had a better cushion than my current one but that was just an extra inch or two of foam. It was heavy, folding (I’d explained my need for a rigid frame) and the footplates rattled. It all felt so… cheap. That’s what it was.

“Since I am a part time user the only thing my local WCS would be able to offer is a standard wheelchair, which is totally unsuitable. It is too heavy, would cause me more pain and I wouldn’t be able to self propel or go anywhere independently.”

“I have hEDS and I got mine from Belfast Trust after two years of fighting. I had trouble persuading wheelchair services that folding chairs can twist and cause dislocations.”

“I had to fund my own because I was refused a referral to wheelchair services.”

“I have EDS 3, now known as hEDS. I have to fight for chairs, often have to fund towards them myself. Even having spina bifida too doesn’t help with getting chairs. A lot of it is down to where you live.”

“I had to fund mine myself. I sold as much as I could and stuck the rest on my credit card. I bought a secondhand chair. I had started a [crowdfunder] for my first wheelchair but I got so much abuse and hate messages from strangers and so-called friends it wasn’t worth pursuing. I couldn’t get a referral to WCS so I’ve never even been assessed. Mind you I don’t need my wheelchair for my EDS. I need it for chronic pelvic pain which mystifies doctors even more than the EDS! There is a possibility it could be linked to the EDS, but doctors just leave it at that. Blah!”

“I have vascular EDS and other related things (scoliosis, hip dysplasia, arthritis etc.) and wheelchair services wouldn’t even assess me because I can walk around the house (using crutches). [My wheelchair] was mostly self funded using my PIP back payments but my lovely friends surprised me by donating the rest that I needed. Already saving for when I need a new chair just in case because this one cost me over £4,000 so wouldn’t be able to replace it at short notice.”

“NHS gave me the cheapest chair and refused everything since!”

I was faced with a choice. Accept the chair and maybe stick to using my old one but swap the cushions, or accept the voucher offer. There was just one catch. If I took the voucher, the NHS would not be responsible for maintaining the chair as they would if I took the “Drift” home. I was told I would receive a voucher equal in value to the “entry-level” chair I’d refused. Well, some financial help toward a more appropriate wheelchair would be better than the heavy, ugly, too-high-for-me alternative. Wouldn’t it?

“I had to buy my own power chair. The NHS refused to help me on three levels: one, because I could walk inside my own home (no choice, it’s two floors up with no lift) and two, because I couldn’t guarantee it would be used more than four times a week and three, they would only give me a manual chair because I don’t fully dislocate, just sublux [subluxation is partial dislocation]. I’m still paying my chair off my credit card almost a year later.”

“My wheelchair experience was horrible but to be honest, the start of my ‘issues’ were all horrible. I have Ehlers-Danlos syndrome which makes me injure myself all the time. I mostly get dislocations.

A few years ago I injured so many body parts at once that I couldn’t walk or even sit myself up. I didn’t know this until it was too late but my muscle was the only thing holding my joints in. I lost quite a lot of muscle and eventually realised I wasn’t getting better.

My legs, arms, and back were all in constant pain and fragile so I couldn’t use crutches. Until I got a wheelchair, I was stuck in my home. I asked multiple doctors about helping me get a wheelchair. I was 18 at the time and many of them believed that I was exaggerating or lying for attention. Eventually, I spoke to PALS and they told me that it would be very hard for a person in my situation to get a wheelchair without buying it myself.

I had just “suddenly” become disabled because of an “invisible” condition.

I had recently lost my job due to my repeated injuries. I had no money. Eventually, after a month of not going outside, my mum bought me a wheelchair on ebay for £60. It made me so happy. Unfortunately, my time outside was still limited. My cheap chair rattled so much that my joints were popping out while I sat still, and by the end of every outing, my entire body would ache. The wheels were literally just circles of plastic rather than actual wheels. About 90 percent of the chair was plastic. I spent months like this. We saved up some money and eventually got me a chair that didn’t make me feel every jolt.

It’s ridiculous that I had to go through this. For the first year of my disability, I had to constantly try to prove I am actually as bad as I say I am. It only ended when a very kind family member got me an hour with a specialist in my condition. She spent the whole time examining my body without me saying a word. By the end of the hour I had a list of physical signs of wear and tear to show any doctor who wouldn’t listen.”

“The physio listened sympathetically as I asked how much the voucher would be worth. He told me that they’d have to price it up but about £200.

Two hundred. I’d done my research and knew that even a modest, decent, active user wheelchair would cost at least ten times that. I think I was too stunned to feel insulted but, to be honest, not altogether surprised. I’d heard the stories. At the time of writing this I’m still waiting for something in the post, nearly two weeks later, to confirm the amount. I’ll be chasing that up soon.”

“They gave me a cheque but it was a drop in the ocean to what I needed!”

“I got a £250 voucher from the NHS service, then £1000 from Access to Work, £1000 from my employer, and I had to pay £800 (so I could use it at weekends!!). It was a lightweight manual. I could only use it for a year before it wrecked my shoulder, neck and hands. I bought e-motion wheels second hand from eBay, lasted another year before neck, shoulder, hands [became] too bad. Then had to buy a powerchair myself from eBay. Now my neck and shoulder got better!!! Hands still bad though!”

“The NHS part funded mine — I then funded (with help from a [crowdfunder] and many hours of overtime) the rest.

The chair they originally gave me was an active user one, but it was huge! The therapist ignored my requets for a shorter and more snug chair and ordered one 4″ too wide and 5″ too long. I cried through the whole fitting where she insisted it was fine and I’d get used to it. I believed her and thought I was overreacting, but when we got home it was too wide to fit through the front door!

Their answer? Can’t you just take the wheels off and lift it through? (No. I have nerve damage and fractured my spine a few years ago which now means I use the chair full time and find it almost impossible to stand unaided).

They agreed that the chair wasn’t appropriate and proceeded to then “obtain quotes” for a specialized version of the chair as they only prescribed Quickie Argons – they would rather have that custom built than consider a different make. They lent me a smaller old chair while they got a quote, but refused to take the old chair back. We waited 6 months for the quote…

Nearly two and a half years after my referral, I asked them again to just stop messing me about and give me a voucher. Within three months I had my beautiful Progeo Joker set up exactly how I need it. My pain is reduced — I can even get through a day at work with my standard doses of painkillers. For the sake of £5,000 I’m able to participate in life. I know it sounds like a lot, but I now pay that in tax in as many months, which wouldn’t be the case without a suitable chair.

Honestly, I won’t ever go through WCS again. The sooner personal wheelchair budgets come in, the better.”

“Bought my own power chair, didn’t even bother with NHS wheelchair services, heard the stories. Apparently if you can walk inside it means you can do a marathon in their eyes.”

“I had to fund my own. Apparently a 30-something year old woman with two children under 5 years old, who has been selected to represent her country in sport, and lives in a rural area does not qualify for an active wheelchair. It was because I don’t use it inside my own home (narrow doorways, carpets and kids’ toys everywhere mean it’s easier to crawl!). I use wheels every time I leave the house though.”

So here I am, promised 10 percent of what I need. A friend has set up a crowdfunder for me and I’m squirrelling away what I can of my PIP to save for extras, services and maybe start saving for the add-on power unit I know I’ll need sooner rather than later. I’ve contacted a local, respected mobility aids dealer who brought two active user models to my home for me to try. We had a good long chat, I can tell you.

As much as there is a large percentage of applicants with hypermobility syndrome disorders who have been let down by these criteria which put the amount of time you are likely to use a chair above actual medical need — which in the case of hEDS, for example, often includes co-morbidities such as POTS and fibromyalgia (I just described myself) — there are those whose needs have been met, with varying degrees of satisfaction. So, for the sake of fairness, let’s read some positives:

“I expected to be given a voucher by WCS but they took me by surprise and their actual quote was: ‘Well, we’d give you the chair we’re ‘supposed’ to give you but you’d only come back to us complaining that your arms are hurting, and that wouldn’t do at all! You’re young and active so need to be able to have the same life as your peers. They gave me a chair which is far from the best, lightest, sleekest models out there but does just about suit me, for light use every so often… even if that does mostly just mean having the most comfortable seat in the train/bus/lecture! Fab for days out going around shopping centres etc but too much on my shoulders/back/arms for getting from A to B on my own. Next time I will likely take the voucher option, but what I have now is a hundred times better than I would have got if WCS in my area had stuck by their ‘chart’ and budget, rather than looking at me as a whole and thinking about my needs and situation. I was very happy with their service and care but it is absolutely a case of postcode lottery, unfortunately.”

“Yes and a P[ersonal] A[ssistant], a better title than carer lol. PA is paid for by adult social care but is self-managed. My OT says I meet the criteria for an electric wheelchair, just in the process of getting it done.”

“I have EDS and just been told by WCS that I qualify for a power chair. I have other conditions though, like diabetes and Raynaud’s that both affect the feeling in my feet.”

“I have hypermobility EDS and also fibromyalgia. I was able to get a manual chair through WCS about 11 years ago. A couple of years ago I self funded (through a finance plan) for a power chair,but have been working really hard to try and build up my shoulder muscles to use my arms more and be able to use my manual chair more. Unfortunately after 11 [years] I’m not the same size I was, so trying to get a new manual chair through WCS again. Just a waiting game for an appointment to get reassessed now.”

“I’ve so far had two chairs from different WCS. The first was an Action 2 tank, not suitable but it at least meant [my partner] could push me so I wasn’t trapped in the flat [in England]. Up here in Scotland I’ve had the power chair, which whilst unsuitable meant I could use it to go out on my own. It was again a very basic model and jarred my joints very badly. I’ve had to return it while I wait for an appointment for an assessment for an active user chair without knowing if I’ll pass that. I have the Enigma Spirit I got to replace the chair broken in a car accident last year. It’s not suitablem but as a friend gave it to me for free and it’s lighter than the Action 2 it’s nice, just again with EDS, not what I need. I’ll know more after my assessment if I get an active user chair. Otherwise I’m very lucky — a friend has a Küshall she is selling and is holding for me till I know if I need to buy one.”

“The best advice I can give for anyone struggling with getting a referral to WCS is to ask for an OT assessment for all aspects of living. I already had a WCS referral in place and my OT assessment was for daily living adaptions, but the OT sped up my referral by several months and told them categorically I needed a chair (I’d self-funded up until then and my chair wasn’t fit for purpose anymore).”

“I have hEDS and I had my first three manual chairs through wheelchair services. I then was put on the waiting list for an active user chair. Was given a Quickie Helium to try until they could order one, but I didn’t like the design of it and it didn’t really fit my needs. As a student, I applied to the Snowdon trust for a grant and was granted the money needed to get a more suitable active rigid frame wheelchair. I am still reasonably good upper body wise but my fatigue levels are ever increasing, so I am being provided with an electric wheelchair through WCS and it is being delivered at the end of this month. (Must add though, I can’t walk at all due to a mixture of EDS and other health issues).”

“I have two too, a power chair and an attendant chair.”

” I was given a manual chair by WCS in 2001 but when I had deteriorated to the point of needing a power chair, they gave me a good one in 2016. (I’d had 2 power chairs before that – one from Access to Work and one I’d bought myself but which was falling apart.) I had to fund the riser and tilt in space functions of the WCS power chair as they weren’t viewed as medical needs.”

Action to Work’s criteria have been tightened recently, too. For myself, as a self-employed Craftie, the rigmarole of filling in forms for a benefit I’m very unlikely to get is a waste of my precious energy. It took me three attempts to successfully apply for PIP, for goodness’ sake. I’ve wrangled with ESA and fallen foul of that imperfect system, cutting our family income by almost £100 because receiving it cancelled out our Working Tax Credit and now I am expected to pay for everything except the seat cushion and the tires (there’s my voucher gone).

This is a mere snapshot of what is going on in the U.K. for a group of disabled people who, to manage their condition, are encouraged to exercise and stay as mobile as possible while pacing their activities, using aids where appropriate and avoiding injury caused by joints that are unreliable.

The assessment criteria put the time and place that the wheelchair is needed above the reality of the hypermobile patient’s physical, emotional and mental needs. They’ve really got their priorities in a twist.

The right wheelchair could prevent complications and accidents. It could provide freedom, relieve anxiety and promote self-confidence. The right wheelchair, freely given, could lighten the financial burden and lift the mood of the person who happened to be born into a rather uncooperative, bendy body.

A zebra on wheels — the right wheels — could do anything.