Flash Says…

Your legs came for free – why don’t my wheels?

Posted on: 2011-03-10

Need a wheelchair? They don’t grow on trees, and they don’t magically appear, attached to the derriere of whoever needs them. So how do you get one, and who pays?

The first thing to consider is that progression towards needing a wheelchair can be a gradual process. Some people will always need one, others only occasionally, and some people just use a wheelchair when recovering from injury or during late pregnancy.

If you need a wheelchair for a short period, – there are two options for hire in the UK. Your local Red Cross branch will lend out rather heavy manual chairs (known as “tanks”) for a few weeks, giving you a choice of transit (with four small wheels, which someone else will push) or self-propel (with two large wheels, which you can push yourself, or someone else can push). You’ll also be able to hire powered wheelchairs and mobility scooters from Shopmobility, who are usually based in shopping centres, and often only loan chairs by the day. Some regions may have additional projects, but generally Red Cross and Shopmobility are the only UK-wide schemes to which you can self-refer.

People with a permanent or long term need can obtain a chair from the NHS’s Wheelchair service, administered by your own region (so rules may vary across the UK). It’s a long process, beginning with a referral from your GP, and although you may have a “free” wheelchair at the end of it, the provided chair may not meet your needs.

My local service divides users into categories – those who need a wheelchair occasionally, those who need one nearly all the time but can walk a little, and those who cannot walk at all. If you fall into the first category you will be given a fairly generic and heavy chair. Those who need a chair a lot of the time outside the house but can walk a little – like me – will get a “lightweight” chair. Don’t be taken in by the name – mine weighed 14 kilos and I struggled to lift it in and out of the car. And those who are reliant on their chair at all times will be classified as an “active user” and can have a lighter, sportier chair.

Manual wheelchairSo far, I’ve been talking about the issue of manual wheelchairs. This is because to qualify for a powered chair there are very strict requirements; generally you must be unable to take a single step, and need to use the chair inside the house as well as outside. Since my house has a narrow doorway, there is no way I could use a chair inside even if I wanted to. Therefore, I will never be provided with a powered chair, no matter how bad my walking (or pushing ability) becomes.

I had a lightweight manual wheelchair for a couple of years. Over that time it wore out through use, until eventually the seat slid forward and back as I moved along. A succession of repairmen said that because I was such an active user I should have a better chair, but because I can walk a bit, I don’t qualify. The only way to be provided with a chair durable enough for my needs and light enough that I could put it into the car with ease is to get the NHS to fund up to the limit of my normal chair, and make up the difference myself to fund the chair I need. This is called the Voucher Scheme – where the NHS will give you the value of the chair that they would have bought for you, and then you top it up to buy the chair that actually meets your needs. In my case, this means forking out £1000 to buy the chair that the advisor at the Wheelchair Clinic says I should have, as opposed to the one they would pay for.

Even so, having agreed to make up the difference myself, I have to wait 3 months for my chair. Wheelchair Services have a limited budget and it can take several months before they can sign off on mine. This is also something I experienced back in 2007 when I had no working wheelchair – no matter how urgent your need, you’ll have to contend with a budget which is stretched to its limit.

Other friends, who have accepted the basic chairs they were offered, have resorted to expensive add-ons such as E-Motion Wheels which make it easier to self-propel the chair.

There is another option which can provide a powered wheelchair (not a manual one) – the Motability Scheme. This is the same scheme by which disabled people can obtain cars or mobility scooters, and it’s funded by the user’s Disability Living Allowance. The disabled person hands over the mobility component of their DLA benefit – around £50 per week – in return for one of the selection of models provided by the scheme. So the disabled person is parting with over £2500 per year in order to receive a wheelchair – it’s certainly not free! The cost and limitation of this scheme is why many people prefer to use the NHS Wheelchair Service.

My friend Imogen has a different problem. She is severely mobility impaired, unable to walk or to move without being hoisted, so she depends entirely on her wheelchair for mobility. You’d think this would mean she qualified for the best chair for her needs, since it’s essential to her life – when she’s not in bed, she’ll be in her wheelchair.

Two wheelchair usersInitially, her local wheelchair service was unable to help. Although she was only a size 18, they told her she was so fat that they couldn’t provide a chair that would fit through standard doorways! She’s been back to Wheelchair Services several times as her impairment progressed and her needs increased, but they were only able to offer basic models which she could not use. In the end, she ended up taking out a loan so she could buy a chair that met her requirements. However, as her disability meant she was unable to work, Imogen knew that she’d spend years repaying the cost of her wheelchair. Ultimately, it bankrupted her.

If she’d been a child, Imogen would have been eligible for support by various charities, most notably Whizz-Kidz – but once you’re an adult, assistance from alternative funding is very limited and unlikely to happen.

Nowadays, Imogen’s very specialised needs mean that the right chair for her costs £10,000 new, but that’s a cost the NHS isn’t prepared to pay. When her old chair fell into disrepair they offered her a simpler model, but this would have meant significant changes to her lifestyle – not being able to mount the steep ramp into a taxi, not being able to negotiate some of the slopes at university – that she wasn’t prepared to accept. Instead, Imogen was offered a voucher for £4500 which left her with a dilemma: it would be cheaper to buy a second hand wheelchair than to top up the voucher to cover the cost of a new one. Yet there are no guarantees with a second hand chair (and for that reason, the NHS won’t allow vouchers to be used in that way, even though it can be the only way for many people to afford the chair they need). So, either way, Imogen has been forced to resort to yet another loan in order to remain mobile.

It may come as a shock to learn that even someone with severe medical conditions and no means of working may have to find some way to fund the wheelchair they need – the only alternative is being stuck in bed. After rent and food, getting around is the next consideration in a mobility-impaired person’s budget checklist, and in many cases that means forking out for wheels.

So there you have it: wheelchairs don’t grow on trees, they don’t magically appear, and unless you are very lucky or can manage with a basic model, they certainly aren’t free.

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4 Responses to "Your legs came for free – why don’t my wheels?"

Thank you for giving an idea of the issues. The kids I worked with generally got the chairs they needed although it sometimes took a fight, but this is just so full of wrong on all sorts of levels!

Thanks for this, it’s very useful to read and shows just how many gaps there are in the system. One of my friends has had to buy 2nd hand electric chairs on ebay and because her condition isn’t a “big name” I believe she’s not eligible for any/many charity funded ones.

Makes me wonder if mobility impaired people are most “discriminated” against by “the system TM” compared to say hearing or visually impaired people?

I often say to people “impairments are expensive, just ask any disabled person about the extra life costs they face and be horrified”. 😦

I feel enlightened – thank you so much for writing this!

@Barakta
Makes me wonder if mobility impaired people are most “discriminated” against by “the system TM” compared to say hearing or visually impaired people?

__________________

My view is probably yes – because that’s how it looks to me (mobility impaired and had to buy my own scooter and powerchair). Can’t honestly say with certainty, though.

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