NHS Wheelchair not suitable

[martyn]

Hi,
I suffer from Episodic Ataxia Type 2 (basically, I feel like I'm drunk while on the waltzers on a ship in heavy seas on a good day) which causes extreme vertigo and balance issues.
Until now, I've been managing with hiking poles to help me balance, but my Neurologist said I should be using a wheelchair around 50% of the time because of how often I fall, plus I'm damaging my hips and shoulders.

I went to my GP who referred me for a wheelchair assessment - telling me I'm not suitable for a manual chair.
9 weeks later and I got a call saying a chair was being delivered, and nothing about an assessment.

The chair was delivered and is a manual chair. Having tried to use it today, it's obvious that it isn't suitable for me.

I'm 15st 6ft2in and my wife is 9st 5ft2, anything over a slight hill and she can't push it - we live in a town that's all hills.
Because I'm dizzy all the time, trying to self propel makes me even dizzier than if I walk using sticks.
Anything other than a totally flat surface and it just goes to one side, I'm having to move it with one hand whilst trying to stop the opposite wheel from moving to keep it straight.
The seat is too low for me, my knees are above my belly button, which is very uncomfortable for more than a few minutes (I also have Restless Legs Syndrome).
I know it will take time.to build up the arm muscles for chair use, but as I already have shoulder problems, that's going to be difficult.

Does anyone know what my options are? I can't afford to go out and buy better chair, or a scooter, so am I just stuck with a chair that is only suitable for use in supermarkets?
If so, then as the disease progresses, I'm going to be pretty much housebound.

Thanks in advance

[reddivine]

You SHOULD have been referred to wheelchair services. Did this not happen? Because there they measure you, height, weight etc, discuss your needs - in your case the balance issues. I would find out why and who supplied that chair, state its not fit for purpose and gat an actual ASSESSMENT. The GP should have referred you to wheelchair services, so you may ave to go back to him. (Crazy system, but thats what it is.)

[martyn]

All that happened is I went to my GP who filled in a referral form. About 11 weeks later they delivered the wheelchair.
No assessment or anything, and I know the GP put down that I couldn't operate a manual chair.

I'll call into the GPs tomorrow, I just didn't know what the situation was regarding it being totally useless to me.

[martyn]

After days of trying, I finally got through to the wheelchair team.
Evidently there is a minimum 3 year waiting list for powered chairs, and they won't issue them to someone with epilepsy (even though I've been fit free for 15 years!) without proof from a Neurologist, so I've now got to get a letter from the Neurologist and then get my GP to re-refer me and THEN I'll go on the waiting list.
In the meantime, they're sending out a new chair with assistant brakes, but if I want any kind of powered chair in the next 3+ years, I've got to fund it myself, which isn't something I can do.

Thanks for all your advice though

[RaspberryRipple]

Oh my goodness!!!
I’m sorry to hear this. 3 years waiting list is insane.
I waited a 29 weeks for my first referral but have also waited a year for a replacement (that was 3 years ago).
You have a few options available in the meantime.

You can get a powerchair through Motability if you get DLA HRM Or PIP EM and are not already on the scheme ie you don’t have a leased car with them.

You can get a second hand chair to tide you over and then sell it or keep as a spare chair.

You could also do hire purchase of a new one but APR could make this more expensive than cost price.

If you do go for a new one, could go for the cheapest one that may not be entirely suitable in terms of everything you need but remember you won’t have to pay VAT.

I was an active chair user for over a decade but was forced into a powerchair with deteriorating disability so while I already had a powerchair I was unable to make full use of it for going out in car etc.
I used a local “Dial a bus” for disabled locals and it was basically a taxi service. This meant I could shop in town or go elsewhere with my PC.
I also made great use of shopmobility. I’d phone in advance to book a PC and they’d bring it out to the car which saved me assembling my manual chair. My local shopmobility asked for a small donation of around £2 and you could also hire their own WAV for the day which is another option.

You could look at getting a hoist for the boot of a car if you have a car. This is something I really wish I’d had and saves the need for a larger vehicle.

ALSO: how about a simple power pack? This can be fitted for a few hundred and converts your manual chair into a powerchair. Although it’s benefit is only to the person pushing. My Dad had this for my late step mother who was terminally ill with a rapid condition. He absolutely loved the fact he had help as she was heavy to push.
There are also EMotion wheels these are power assist wheels for an active chair user with larger wheels and handrims. These are very expensive at around £3k to £4K. Secondhand ones often come up much cheaper.


Regarding the epilepsy: a friend of mine has this condition and has been seizure free for around 3 years. However I have witnessed a couple of minor absences. She’s never had an issue with the local wheelchair services regarding her ability to safely handle a PC.



Rasy

[reddivine]

After days of trying, I finally got through to the wheelchair team.
Evidently there is a minimum 3 year waiting list for powered chairs, and they won't issue them to someone with epilepsy (even though I've been fit free for 15 years!) without proof from a Neurologist, so I've now got to get a letter from the Neurologist and then get my GP to re-refer me and THEN I'll go on the waiting list.
In the meantime, they're sending out a new chair with assistant brakes, but if I want any kind of powered chair in the next 3+ years, I've got to fund it myself, which isn't something I can do.

Thanks for all your advice though

NOT surprised with the kerfuffle. i too am epileptic. I bought thru the voucher scheme, a manual with attendant brakes. Then as it became obvious I did not have upper body strength got a add on motor. I would try a 2 pronged approach. Get letter from neurologist, etc etc and go on waiting list. BUT also the need is now and I would say for attendant powerd chair, bearing in mind what you said.

http://www.benoitsolutions.co.uk/light_assist.html would do you fine. Funding! That another matter, but consider going for grant funding . https://www.turn2us.org.uk/Get-Support is useful for showing you which charities you may qualify for.

I have a Lightdrive, which some on here have seen. The powered by user equivalent (also on website). Paid for by 3 grants in the end. So give it a go. Whatever you do, don't buy sight unseen. with your weight, you need to try b4 you buy. find a local mobility dealer.

Would a scooter suit you better. The epilepsy argument is void, I argue as, if you DO have a fit then your hand fails to grip and you come to a stop anyway.

[Shawn]

In the short-term try this, put your left foot to the right-hand side plate and your right foot to the left-hand side plate so your legs are effectively crossed. This will lower your knees and the chair will not feel as small anymore, or at least it doesn't for me this is what I have to do.

[martyn]

Unfortunately our area doesn't have a voucher scheme, you just get something delivered based on height and weight.
They have swapped the wheelchair for an attendant propelled one with attendant brakes and a higher seat. Still not ideal, but at least my wife can stop it running away downhill.

I did apply for a scooter from.one charity, but as it won't fit inside the house and there's no room in the front yard for a weatherproof storage shed, they can't help me, so I'm looking at alternatives and keeping an eye out on eBay.

[Shawn]

I have had 2 wheelchairs from Gumtree lately for a fraction of the new price. Thing about eBay you have the whole country as competition on Gumtree it usually just a 30 mile radius.

[martyn]

And on that note, I've just won an auction for a Drive Enigma Energie powered chair for £80 with new batteries.
I doubt it's the best there is out even close, but if it gets me out when needed, I'll be happy