The Wheelchair Man

The first step towards getting your hands on a lovely shiny new power wheelchair from the NHS is to be visited in your home by an Assessor from the Wheelchair Clinic.  My lovely OT referred me, and a letter arrived telling me that I would be visited early in September.  Exciting stuff!  So the appointed time came – which is more than you could say for the Assessor!  We waited an hour after the appointment time before we rang them.  They cheerfully informed us that they’d had to cancel my appointment, and would send me a new one through the post.  The letter arrived a couple of days later, apologising that circumstances outside their control had made it necessary to reschedule, and gave me a new date 3 weeks later.  

On the new appointment day, we didn’t really hold out a lot of hope but, bang on time, the doorbell rang and the adventure began.  Colin ushered the Wheelchair Man into the sitting room.  “Ooh, hello” said the Wheelchair Man, shook my hand unenthusiastically, and put his crocheted shoulder bag down on the floor by his feet.  Our dog loves nothing better than a new bag to investigate, and immediately stuck her nose in it.  The Wheelchair Man glared at her.  Normally I would call her away, but I didn’t.  Instead I admired the bag, and he told us that it had been crocheted for him by a friend.  “She’s very clever” I remarked.  Turned out the friend was a ‘he’, not a ‘she’.  Possibly my faux pas did not endear me to the Wheelchair Man.

So he got his notepad out of his crocheted bag and asked me to describe my day.  I showed him how I can raise and lower my armchair to get out of it, and told him I can walk to the downstairs loo, and to the kitchen to make coffee.  Game over.  They don’t provide wheelchairs for socialising, he told me.  They only supply them if you can’t walk at all around the house.  I pointed out that I have a progressive disease, and that day will come sooner or later.  I pointed out that when that day comes it’s a bit late to start thinking about ordering a wheelchair that could take months to arrive.  He wrote something in his notebook, I don’t know what.  “Stroppy cow”, probably.

He said he had a power chair in the van that I was welcome to try out.  I asked him if it had a seat that would lift me up.  The Wheelchair Man said that the NHS don’t supply chairs with elevating seats.  I told him that I knew several people with my condition who had been provided with NHS wheelchairs, and they had paid themselves for the elevating seat to be added.  He said that he’d worked for the Wheelchair Service for 20 years and has never heard of such a thing.  Anyway, I said there was no point in him bringing the chair in because I wouldn’t be able to get out of it safely.  He suggested that Colin would be able to help me out, and Colin filled him in on the mechanics of getting someone with IBM out of a low chair, making it quite clear that he wasn’t going to risk me falling.  

So the Wheelchair Man said I will have to go the the Wheelchair Clinic for a test drive in case I couldn’t do it and ended up driving under a bus or something.  It crossed my mind that I don’t see an awful lot of buses between my sitting room and my kitchen, but that didn’t seem like a conversation I needed to get into so I left it.  So I asked the Wheelchair Man, because I was genuinely interested, how I was going to get to Wheelchair Clinic.  He said he would send a manual wheelchair and I said I’d already got one but I can’t get out of it any more.  He asked me if it had been crash-tested, and I confessed that I had no idea.  Colin took the Wheelchair Man out to the car to show him our wheelchair, which is in the boot of the car along with the electric riser seat that until fairly recently lifted me out of the wheelchair quite successfully.  Out of the front room window, I could see the Wheelchair Man flapping his arms in horror.  Apparently my wheelchair hasn’t been crash tested and I mustn’t use it, and I mustn’t put the riser cushion on it either.  Ever.

So he outlined his plan for getting me to the Wheelchair Clinic, which involved sending patient transport, a Proper (crash tested) Wheelchair and portable ramps to fetch me. “Great” I said.  “How am I going to get out of the wheelchair when I get there?”  Apparently they can park me next to a bench that will raise me up, all I will need to do is shuffle myself sideways off the wheelchair onto the bench.  I know I can’t do that, but I suppose they can slide me over if need be so in theory that’s do-able.  They don’t have any test chairs with rising seats of course, but I guess we can repeat the slide process back into my Proper Wheelchair.  Patient transport can bring me home and wheel me up a ramp into the house.  “How am I going to get out of the wheelchair when I get home?” I asked.  The Wheelchair Man had no answer.

While he was here, I thought I would ask him if he knew anything about Vela Tango chairs, which are basically office chairs with a powered lift function.  The Wheelchair Man flapped his arms.  “No,no,no” he cried.  “People have been MAIMED using those”  He suggested that if I have that amount of money to throw away I should give it to the dogs’ home.

After a few more pleasantries the Wheelchair Man gathered up his crocheted bag and got up to leave.  Our dog hopped up onto my lap to say goodbye, as she always does when visitors leave.  The Wheelchair Man glared at her.  He shook my hand unenthusiastically, and our dog took the opportunity to lick the back of his hand.  The look of utter disgust on the Wheelchair Man’s face made the whole morning worthwhile.

A week or so later the entirely useless manual wheelchair arrived.  I haven’t heard anything about the power chair but I assume from what the Wheelchair Man said that I don’t qualify for one.  Hey ho. 

Author: stephhicks

The ups and downs of life with a rare muscle wasting disease, Inclusion Body Myositis, after the BYM338 (Bimagrumab) drug trial

8 thoughts on “The Wheelchair Man”

  1. Genuine bummer! I don’t know if they are available in England but I purchased a Hoveround MPV5 which was partly covered by our Medicare with the bulk out of my own pocket. The seat both raises and swivels and the chair easily maneuvers in tight spaces. We get lots of rain in Oregon so I have a plastic bag to put over the controller when I go outside. It fits easily into our Toyota Sienna (Braun modified) side ramp van. You might do a web search for “Hoveround” to see if they are available in other countries. I can no longer walk at all but can still stand with the aid of the chair seat lifted. I don’t have enough arm strength to operate my regular chair so the power chair is a life saver. P.S. they also make a power lift that fits on the back of a car for transporting the Hoveround so you don’t have to buy another vehicle. Happy hunting.
    Gary

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    1. Thanks Gary – they don’t seem to be available here in the UK but I will look at the spec and use that as a starting point if I have to buy my own. There are so many different power chairs on the market it’s hard to know where to start, so that’s a good tip. Still hoping that the National Health Service (NHS) will change their minds and supply one, but to be honest it can take such a long time for it to arrive that it would make more sense to bite the bullet and order one myself. So expensive though!

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  2. Hi Steph,
    I am so pleased you are continuing to write your “Guinea Pig’s Tale” column, over the time I started to feel I knew you and Colin.

    Like you I was on the BYM338 trial at the National hospital and so looked forward to your regular blog, comparing my experience (always very similar) to yours.
    I haven’t missed the long, often slow and tortuous, early morning journeys but do wish we had had a more positive experience and feed back from Novartis.

    You were unlucky with your wheelchair assessment man. I was told the same as you that the NHS does not provide the seat lift which we with IBM need.

    I managed to get one by asking for the voucher for the maximum value the NHS would spend, the help of a charity and then topping up the remainder. This also gave me the chance to get one that suited my needs and my home, a small Victorian terraced house. If you contact me through the Myositis forum site I can give some more info..

    Your wheelchair man was wrong about the Vela Tango.

    I have one and it is great.

    It has made me day to day life infinitely easier as I use it as a dining chair, chair for my desk and computer and in the kitchen at its lowest position, I put the brake on and then can reach into low cupboards. Something impossible without it. Then bring the height up to work surface height for food preparation etc.
    Then, when ready, brake on and raise it up to a height that I can get up from. And I am 6ft tall.
    Sitting and walking it along from area to area is doable and I feel it is another safe form of exercise although sometimes it is easier to pull myself along or push backwards or even better have some one push me around on it.
    I would thoroughly recommend one. Of course it isn’t cheap but it feels sturdy, it is really easy to use and because it is so practical it cuts down the chance of falling and that, for me, makes it worth every penny.
    Regards
    CK

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    1. That’s great info about the Vela Tango, thanks for that. I decided that the Wheelchair Man had no idea what he was talking about and I’ve managed to arrange a home demo for next Monday. I’m sure I’ll go ahead and order one, it sounds just what I need. Anything that makes life easier and safer is worth every penny. If it turns out that I have to buy my own power chair (I’m going to get my OT to query this, and then get the Neuromuscular PT at the John Radcliffe hospital involved as a last resort) I will pick your brains about how to decide which one is the best for me. Many thanks.

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  3. Too bad there wasn’t a way to put the wheelchair man in your shoes for a month or so. I wonder if it would improve his communication with those with disabilities. Does make one wonder how these people can get jobs where they are dealing with the public. I do hope you are able to sort it out and get some monetary assistance. This is one expensive disease.

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  4. Hi Steph,
    Trying to navigate the healthcare systems is almost as maddening as having IBM 😦
    I’m not sure about the differences between the US and UK, but I was able to get a power wheelchair with the power lift seat. We do have commercial insurance however, not Medicare or National Health.
    I was given a prescription by an MD (Physiatrist at Mass General) to be seen in the wheelchair clinic at Spaulding, which is a top 5 rehab hospital and located in Boston.
    After a month wait, I had my appt there, where they measured me and I tried two different chairs inside and outside. The vendor then came to my house (another month later) where I tried my preferred choice inside and outside.
    We had a ramp installed in the garage to access the house after I fell and broke my ankle in May. So after giving it the thumbs up, then it took another three months before we saw the whites of his eyes with my new wheels.
    It’s such a racket, and there is so much fraud with durable medical equipment; the patients are poorly accommodated….
    Wishing you the best, and supporting you in persevering with the hand we’ve been dealt. A glass of wine at the end of the day always helps πŸ˜‰
    Cindy

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  5. Fantastic I am still laughing but I despair of wheelchair services!!! My husband must not be “started” on the uselessness of wheelchair services in Sheffield. We had exactly the same nonsense and have had a non rising power wheelchair languishing in out garage for over 3 years whilst we had to pay Β£8k for a suitable riser chair.
    So, David has fought and fought …and fought this nonsense for well over a year writing and complaining to everyone he could think off at the NHS and our MP etc.
    Finally someone suggested he must apply for an IFR – individual funding request through a helpful lady in neurology dept. After weeks and weeks it was approved and as we had had to give two quotes for exactly what he required, we thought they would just go and order the one we wanted. Oh no…. After many phone calls asking when it was being ordered we were told, much to David’s despair , that it was being referred to guess who – wheelchair services. So David phoned them and they said oh we will have to see if we can get this approved —- no…. The IFR was already approved. They then said he needed to be seen so they could see if it was ok for him. No… He already had the quotes and they had measured him. Oh well you will have to sign a disclaimer they said, saying that it is right for you (presumably so we wouldn’t sue later). Ok so David signed that. Oh now we have to send it to our Governance committee to check all ok. By this time David has lost the plot. They now tell us they will order it but don’t know how long it will take.
    The moral of this sad story is don’t give up. Complain a lot to the health service and make a complete nuisance of yourself. You really shouldn’t have to do that but sadly they are not equipped to know how IBM affects people.
    This is just a potted history of what David had to do, the emails were endless.
    Hopefully the new wheelchair is on its way now but the money they have wasted by referring us all over the place would have paid for a new wheelchair in the first place. X

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    1. Oh good grief! What a stunning waste of everyone’s time and resources. This would try the patience of a saint! You jump through every hoop they present you with, and then start back at the beginning again πŸ™‚ I hope David gets his chair soon, and I hope you’re charging them storage for keeping their power chair in your garage all this time. Obviously my battle is only just beginning…….

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