The Difficult Decision to Get a Wheelchair

The Difficult Decision to Get a Wheelchair

This article was first published in the December issue of Living Well with Fibromyalgia

In the next year some of you may be pondering the decision of whether or not to use a wheelchair, if you’re finding walking painful or exhausting.

It’s an incredibly difficult decision, and there are often a few reasons why this hesitation happens.  For some it can feel like giving in, that’s you’ve stopped fighting.  It can sometimes feel like you’re sacrificing your mobility – that if you have a wheelchair you won’t push yourself walk at all anymore.  There can be a stereotype that wheelchairs are for people who cannot walk at all, or just for older people.  It can feel embarrassing, or like you’re making a big deal out of your situation.  There are lots of valid (and some not so valid) reasons that can make that step a hard one.

The main suggestion I put to people wrestling with this decision is – are you avoiding going to places because you struggle to walk around?  Have you stopped going out for a walk with your family, going on a shopping trip or not even considering an evening out with friends?

That’s the position I found myself in a few years ago.  I was simply avoiding those activities because walking was so painful.  One day someone offered to push me around a supermarket in a manual wheelchair they had available for customers.  I hesitated – they were for people with disabilities!  Eventually I gave it a go, and the difference it made was incredible.   I could spend time looking at what I wanted, browsing through the aisles – something I hadn’t been able to do for a long time.  My attitude changed, and I began visiting shops or places I knew had wheelchairs or scooters for customer use.  (I also accepted I was one of those people with disabilities during this time.)

I did find being pushed in a manual wheelchair very odd though, but it was my only choice as I’m unable to self-propel.  It feels like you’re giving all of your independence over to the person pushing you, and it’s hard to explain what this feels like – as an adult who has been making their own decisions for years.  That person has the power to decide where you go and what you will do, and you have to trust them implicitly.  It’s also a physically exhausting job for them.  There are lots hazards you don’t really consider when walking such as hills, pot holes and curbs, plus generally poor accessibility like having no ramps, tight turns, advertising boards on the pavements and other street furniture. The strain it put on the person pushing made me feel very guilty.

The cost of a wheelchair or scooter can also be difficult to afford.  I was provided a manual wheelchair on the NHS, but as I couldn’t use it independently and didn’t have anyone to push me around 24/7, it mostly sat gathering dust.  The decision for upgrading the manual was taken out of my hands by damage to my spine that means I can now only walk very short distances.  As I was working at the time I was able to apply for grant funding for an electric wheelchair and a hoist for my car that was available to help disabled people in employment.  Other options include schemes to lend a chair or scooter for a short period of time, charitable grants or medical insurance that may help towards a purchase.  A decent wheelchair will be costly, but it’s also worth considering buying second-hand through private sellers or online outlets.

However, getting a wheelchair changed my world overnight.  I’ve been able to go on family outings, visit local parks and enjoy trips out to local shops.  It means I can save my energy and pain levels from increasing through walking and use them on enjoying myself instead.  I still sometimes feel awkward around family and people I haven’t seen in awhile – but if they can’t accept your need to get around without agonising pain – that’s their problem.

So if you’re sitting at home still trying to make that decision and thinking of the negatives – try to think of all the positive things you could do that you haven’t been able to do in some time if you’ve struggled with walking.  A wheelchair could  open more of the world to you.

My wheelchair - an Invacare TDX

My wheelchair – an Invacare TDX

New Wheelchair!

New Wheelchair!

I had a lot of problems with my wheelchair, as I’ve spoken about before.

Luckily for me, my quest for a refund was successful.  However, it then left me without a wheelchair for six months.  I cannot begin to describe the frustration this has caused – taking away my independence.  I haven’t been able to do something as simple as pop to the shop for six whole months.

You’d think getting a new wheelchair would be easy, right?  Just a case of ringing the NHS and saying ‘Hey, I can’t really walk.  Can you order me a chair?’  ‘Yes, no problem, we’ll get right on that.’

No.

No, no, no.  That’s not how it works.

Okay, but social services must be able to get you one, right?

Nope.

Now, the NHS does have local wheelchair services.  They each have different policies.  My local one has a policy that if you can walk one step, one tiny, measly little step – you can’t have an electric wheelchair.  You can have a manual chair though, even if you physically can’t push it yourself, and don’t have someone strong following you around all day to push it for you.  So, to be fair – they did give me a manual chair, that sat dusty in my garage because I can’t push it at all, and my informal carer, my mum, has two frozen shoulders.

So then I looked for charities that may be able to help.  None of my conditions have a particularly large charity, so that was out.  There are a couple of children’s wheelchair charities - that go up to age 25/26 – but have massive waiting lists.

Now lucky me, I came across an answer – Access to Work!  I’d just started a job, a year ago, when I made my application.  I knew my wheelchair wouldn’t last, plus my needs had drastically changed – I needed something comfortable that fit my needs.

Now, I believe Access to Work is an amazing organisation that do a lot of fabulous work, but this whole process has been bogged down for ridiculous reasons.  Basically, I have an adapted Motability car, and a wheelchair that would fit my needs wouldn’t fit into my Focus.  It needed to be taller to fit a more robust wheelchair hoist in.  And I needed for pay for it again, and pay for all the expensive adaptations, and I didn’t have any money.

So then started the biggest circle-jerk waste of time known to man.  Responsibility was passed between Access to Work and Motability like the latest contagious virus.  Neither would take control, both had the answer of ‘speak to the other.’  Hence why six months later when my wheelchair finally got taken back for a refund, I was left ANOTHER six months with nothing.

It wasn’t all their fault – it took ages to find a chair that fitted my needs, and ages again to pick a car that was right for me.

But enough with the whining – I now have a lovely, amazing wheelchair.  It’s the TDX Invacare, and it runs like a dream.

 

The hoist lifting the chair

The hoist lifting the chair

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IMG_9453

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The bar handy to put hooks to hold bags.

The bar handy to put hooks to hold bags.

I HAVE MY INDEPENDENCE BACK!

On-Going Issues with Betterlife HealthCare and my quest for a refund

On-Going Issues with Betterlife HealthCare and my quest for a refund

Credit to Catalin82

Credit to Catalin82

In July I got a new wheelchair as I posted about here.  Sadly, it hasn’t gone so well and the company I got it from have been awful.  I have phoned, written and begged the company for a replacement for over a year.  Last night I post my temper and wrote to the CEO of Betterlife Healthcare.  I hope this gets an answer.  If it doesn’t – it made me feel a little better.

Dear Mr Abrahams

I am writing in regards to the on-going saga which can be summed up by the fact in July 2011 you sold me what you define as an ‘Aries wheelchair’ and I define as a ‘useless piece of rubbish that regularly breaks down, or regularly has pieces falling of it – interspersed with the most appalling customer service I have ever received from a company’.

First of all, I’m not sure if you’re aware, but people who generally use wheelchairs either can’t walk, or find it difficult to. We generally rely on them, and find them quite important in our lives. I get the impression from your company you don’t understand this vital function by you way you have treated me over the past year, so I just thought I’d clear that up for you.

On to the point of this letter – one of the many letters, emails and phone calls I’ve had to make over the past year. I agreed to you taking the chair away for an inspection, despite having taken a day off work a few weeks ago when you sent a technician to carry one out – who then took photos for 30 seconds and then left – with no report forthcoming. So I agreed to another inspection only on the proviso I was given an alternative suitable chair.

First I was called by someone who said they were bringing a scooter – I’m unsure if it really was a scooter, as so many members of your staff have an incredibly annoying habit of calling wheelchairs scooters, which is a shame because I would have thought as a mobility company you might be aware of the differences between the two just by looking at them. Silly me.

I explained I did not want a replacement scooter, but a wheelchair, but the lady then came back to say I could have a loan chair, but it could only be used indoors. That obviously did not meet the definition of an ‘alternative’, just as if I was offered a loan car but was told I couldn’t leave my drive way, then eyebrows would clearly be raised. The weird thing about wheelchairs is that you generally use them to leave the house, so I declined this ludicrous offer.

My next offer was a specific wheelchair that I was given the name of. As my trust with your company is on a par with the countries feelings towards the banking sector, I decided to google this before accepting. I immediately noticed the weight limit of the wheelchair did not meet the accepted level I had just informed you of 30 seconds ago. I was then told there was no other alternative, so we were left at stalemate.

My mum then decided to help me by contacting a manager at your company, Heather, to try and address this, and Heather promised a suitable alternative would be given that could in fact leave the house, met the weight limit, and go into a car. Great! Except this was the same Heather who twice promised me a replacement chair, then denied all knowledge and said I was lying when it came to actually obtaining said replacement. So again, my trust? Bob Diamond level.

The technician came today to pick up my sorry state of a wheelchair, which currently looks like something that’s had a very hard life – with all four tyres going flat despite regularly pumping them, the replacement footplate not clicking into place, the glue or bolts holding the side of the wheelchair in place having fallen off – leaving both sides flapping, and just to top it off – as the technician lifted the chair, something else fell from it, like something out of a comedy sketch. Except I don’t find it funny.

He then handed over a wheelchair – a rickety looking thing with a big split across the headrest and left. Firstly, it wasn’t charged – which means I won’t be able to use it until tomorrow, which seems really rude of you – but I suppose a blip on the radar at this point. Worst of all – it’s that specific chair I declined. You know, that chair that doesn’t meet the weight requirements?

I used the last drops of the battery life to take it to the back of the house, as it wobbled away, and theb tipped as I went round the corner but was luckily saved from falling by my mum. So that ‘replacement’ chair can’t actually be used as it’s yet another completely pile of rubbish, which I suppose I was expecting from your company.

I’m tired of emailing or phoning you begging you for a refund, saying I’m ‘shocked and appalled’ with your service and unhappy that I’m housebound as I wait yet another repair on the chair. I oddly enough have better things to do. So here’s a suggestion: just give me my money back so I can get a replacement chair from elsewhere, and you can carry on treating your other customers with contempt.

Yours sincerely

Jade

Edit: I got a response the next day offering a refund!  I went back and requested some compensation for all the injuries and suffering caused, and the times I’ve been trapped indoors for months on end due to the wheeelchair breaking.

He came back to offer 10% off my next wheelchair from them.  Needless to say – I said no.

Rolling in the Deep…

Rolling in the Deep…

 

Credit to cuervo

Credit to cuervo

Sometimes I have those days – although in my case, it always seems to happen in the middle of the night. One of those oh god why does nothing go right things?

Sometimes I’m not sure why I’m so anxious, and why somethings become such a big deal. I’m currently trying to get my wheelchair replaced via grants, and in my desperate research to find any organisations that may actually give me any help stumbled across some research that showed people with Ehlers-Danlos are highly susceptible to miscarriage. It’s not like I’m anywhere close to having a child, or even know if I will have them – but if we didn’t have enough against us having children already.  First is the high chance of giving the kid the condition in the first place – and it possibly being the ‘die early’ type, not just the painful type. Then there is the possibility of my hypermobility vastly increasing during pregnancy – to the point of constant dislocation, and issues giving birth with the pelvis. Then there is the issue of having to give up the morphine for nine months, or have the child be born addicted to drugs and have to spend the first few weeks going through withdrawal in intensive care. So the cherry on the top is that there is a good chance the baby won’t survive anyway. Fabulous.  I don’t mean to feel sorry for myself, but I’m still learning so much about this condition.  I’ve only been diagnosed with it for a year – and am still getting to grips with how it all works.

Then back to the wheelchair. I bought this chair in July. Well, when I say I did – actually some members of my family clubbed together to buy it for me, but we made the error of buying it from Betterlife Healthcare – a company we now know to have appalling customer service, questionable ethics, and a very much ‘we don’t care your wheelchair is a pile of crap’ attitude.

It’s brilliant to have a chair that jams on everything going, let me tell you. I particularly loved in when my chair stuck fast on the flat ground when coming out of a church, with 200 wedding guests behind me. Or when my mum tried to unjam the chair in a shop, and the footplate came free so quickly she fell on the floor and her arms and legs were covered in bruises. Or when I left work the other day to pop to a shop and it jammed on a flat pavement – and an 85 year old in a wheelchair, with an oxygen tube, had to stop and help me!

And yes, we’ve complained. Their attitude can be summed up with ‘haha, we have your money, now go away.’ I don’t actually want a refund, I want a replacement – because a refund will leave me without a goddamn chair, and it was so incredibly hard to find a chair that met my requirements in the first place (and I promise it was basic needs, not ‘it must be glittery pink’.) I have searched for a new chair, but the next type that meets the standard of being light enough to lift into a car and foldable seems to jump up by about £4000.

Then I found this charity called Action for Kids, which despite its title is meant to offer help getting a wheelchair for up to 26 year olds. I contacted them months ago, and was promised a visit which has yet to occur, despite constantly chasing them. When I phoned to find out their requirements they seemed very confused, and they gave me an extensive medical form to fill in – of which listed only very specific conditions and total paralysis were mentioned, which is very confusing because people with those conditions would qualify for a wheelchair from the NHS as they would be totally unable to walk.

Oh yes, did you know the NHS has a wheelchair service? When I first was referred for chair a few years ago their policy for an electric wheelchair was that you had to use it indoors and out. As I lived in a postage stamp house I couldn’t fit a wheelchair in it, so that ruled that out and they gave me a manual one instead. This was great, except I manage about a quarter of a turn before my shoulders and arms go into spasm, and don’t recover for about a week, which meant mum was forced to push me, which is not easy. You think the world is wheelchair accessible? There isn’t much I can say, other that it’s not.

So then we skip forward to buying the crap electric wheelchair, and it constantly breaking down.  We then moved into an accessible bungalow and I am now having to use the chair a lot more now, even in the workplace.  So I contact the NHS again and they inform me the policy has changed – they now only give them to people who cannot walk a step. Ever. I explain I cannot use a manual wheelchair. She’s sympathetic. I tell her my mum has damaged both her shoulders from pushing the chair, and lifting it in and out the car. She’s even more sympathetic. Then she tells me tough luck, policy is policy. Okay, she didn’t use those words – but it was implied.

And so I am here with a wheelchair which currently has no footplates. I got replacements a couple of weeks ago, but they both snapped off last week. On even ground. Action for Kids implied it would be months and months before I got near the top of the list, plus they judge you on whether you actually deserve a wheelchair (i.e. not on medical grounds, but there is a section on why you think you should be given one).

The warranty for my chair runs out in July. If I ask for a refund for the chair I will struggle to work, run the access group, or go out anywhere. If I don’t I’m stuck with it forever.

I need to apply for grants, but I just don’t have the energy at the moment.

I kind of need a shoulder to cry on right now, as it’s all a bit overwhelming, and at the same time I need someone to say oh pull it together and stop whining, you aren’t having babies any time soon, and it’s just a fricken wheelchair!

Yeah, it’s one of those nights.

New Wheelchair!

New Wheelchair!

Some members of my family have very kindly clubbed together to buy me an electric wheelchair. It took quite some time to find one that came apart to go in the car, that my mum could lift alone, and was in our price range but we finally found one.

The batteries slide out and it then folds two ways to make it smaller. It’s supposed to be arriving tomorrow evening and I’m very excited! It is a fantastic feeling – having choice over where you can go and not the horrible feeling of guilt you get when someone has to push you.

Hopefully Debbie at Glamsticks will be able to bling it up for me as beautifully as she does my sticks.

Speaking of, I spent some of my birthday money on my fourth stick which is going to be shades of ocean blues.

English: Controller of electric-powered wheelc...

Controller of electric-powered wheelchair Belize. (Photo credit: Wikipedia)