Wheelchairs: From the mid 19th century... - Myalgic Encephalo...

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Wheelchairs

Ian123 profile image
10 Replies

From the mid 19th century until the early 21st century technology has changed many things.

The question that is bugging me is why are wheelchairs not one of the many things changed beyond all recognition by the technology available - the equivalent of model T Fords is still standard fare - why ?

It should not be price a powered wheelchair costs as much as a small family car while using technology suited for the beginning of the last century. There is as much thought about the contents carried as goes into a sack barrow - something that really matters with chronic pain, you really don't want to be able too count the cracks in the pavement.

A link for NHS wheelchair services for the glossy version nhs.uk/NHSEngland/AboutNHSs...

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Ian123 profile image
Ian123
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Starbys profile image
Starbys

The NHS wheelchair service leaves a lot to be desired to say the least.

In my local area's wheelchair service they have an exclusion criteria and one of the exclusion criteria is people with chronic fatigue and people with chronic widespread pain!!!!

So anyone with ME, CFS, Fibromyalgia routinely ruled out!!!

It very carefully states that wheelchair provision will only be permitted to these groups if actively supported by a CFS clinic or in the case of chronic pain a chronic pain clinic and if as part of a rehabilitation programme!!!

Ridiculous and discriminatory, and I note from your link in conflict with the NHS choices page which says anyone with severely reduced mobility should be entitled!

I don't know if this is the policy everywhere but is in my area.

Also, in my area part of the criteria is that you have to be able to use the wheelchair on at least 5 days a week and for at least 3 hours at a time in order to be eligible for an NHS funded wheelchair!!

- so as a severe myalgic encephalomyelitis patient who's bed bound, in other words, the NHS excludes you from having a wheelchair because you are too disabled!!!

At one point whilst bed bound my GP tried to apply for a tilt in space wheelchair for me to allow me to go out once a fortnight whilst bed bound the rest of the time, to reduce social isolation.

But we were refused because I am not able to get of bed on 5 days a week and for at least 3 hours at a time.

My GP had to resort to lying that I was able to use 7 days a week in an effort to try to get me funding.

But the assessor refused to grant the wheelchair even then as they said I'd have to be able to regularly use a reclining armchair in order to even be considered for a tilt in space wheelchair. And there's no way I could spend all day in a reclining armchair or more than one day at a time as I'd have week(s) of recovery afterwards during which time have to be totally flat in bed.

In other words they don't want to fund a tilt in space wheelchair as it's too expensive.

And they don't want to improve mobility or quality of life as they refuse the technology that would offer this.

The NHS and wheelchairs are a bunch of contradictions and their criteria are not appropriate to real life situations.

Ian123 profile image
Ian123 in reply toStarbys

Bought my own power chair which tilts and I can further modify as I see fit, using my DLA mobility money as funding, by buying a powerchair and adapted vehicle second hand I could have both if I had chosen Motability motability.co.uk/ it is either a chair/scooter or a car with no option for even the cheapest car and wheelchair as a package.

Starbys profile image
Starbys in reply toIan123

glad u found a chair u can use :-)

but still wrong that not accessible via NHS tho, isn't it.!

i know exactly what u mean about motability, i thought the same. it's especially ironic as a power chair won't fit in most standards cars, so ur stuck as either u get a power chair via motability that won't fit in the car, or u get an adapted car but no wheelchair provision!

I suppose we shd think ourselves lucky anything is on offer the rate the cuts are going!

the more severe u are the less the nhs equipment provision meets ur needs and the more inadequate the benefits are for equip that costs £1000s when u have complex needs :-(

at least we're not in america or thailand tho! feel so sorry for those poor people..

Ian123 profile image
Ian123 in reply toStarbys

Works something akin to NHS glasses when shown the options find the money so you can have what you want. Most wheelchair services will issue a voucher for the value of the chair they would have provided so you can put money with it and buy something that meets your needs, this system has the advantage of the wheelchair services providing the maintenance service for the chair (the cost of batteries makes this a not inconsiderable sum.

Starbys profile image
Starbys in reply toIan123

It's true but they will only do this if you meet all their impractical criteria though!

Otherwise u get nothing if ur too disabled to fit their criteria! Crazy!

I agree that if u do qualify though the maintenance is worth having as that's a long term cost, whereas buying the wheelchair can - if u can afford it - be more of a one off payment or short term finance.

Long-term u need that financial part of maintenance covered if possible.

Ian123 profile image
Ian123 in reply toStarbys

Know of a case recently gone through the process, a sixteen week wait for assessment a month for the decision then a fourteen week wait for the wheelchair delivery and it was not really that specialized a chair :-(

Starbys profile image
Starbys in reply toIan123

That's really bad but sadly not surprising :-(

Also did u notice all the disablement centres are being changed to be called enablement centres, along with cuts to the disability aids people need to be enabled!

Ian123 profile image
Ian123 in reply toStarbys

The priority with enabling is enabling back to work if not in that group what's the hurry :-(

Starbys profile image
Starbys

for anyone reading this looking to buy, i was recommended by several different experts this as the best brand (although there are many other reliable ones): invacare.co.uk

the Red Cross also will rent out wheelchairs for short term periods of 6 weeks or sometimes up to 3 months. some Red Cross branches also sell second hand wheelchairs at good prices. these are basic wheelchairs and best for use if you're able to walk, but just need a wheelchair for long days out, or bad days to get to the shops. they are 'attendant propelled' ones which u need someone to push you in.

redcross.org.uk/What-we-do/...

also the Shobmobility scheme operating in many shopping centres across the UK will lend a powered wheelchair, scooter or attendant propelled wheelchair to use during the course of a shopping trip to be returned at the end of the shopping trip. it requires being able to get from the car to the Shopmobility base independently - so good for example if you can walk only shorter distances - or a friend/relative who's with you to leave you in the car, go and pick up the wheelchair and then come back to the car to pick u up.

shopmobility.org.uk

For anyone with ME who doesn't need a wheelchair and feels scared by this, please don't be as many people manage without ever needing a wheelchair even if ill for years. :-)

Equally for people who find they get to the stage where for example: if your friend invites you out and you're always turning them down as too ill/ exhausted/ in pain, then although the idea seems alien at first, and it's a hard idea to get used to, considering using a wheelchair occasionally to facilitate u going out when u otherwise wouldn't be able to increases ability to participate socially and get out more. so for anyone regularly in that position and not getting out as for example can't walk far enough or quick enough or would otherwise not be well enough then a wheelchair for occasional use can be worth considering. This does take getting your head around which can be very hard, but u have to consider: would using one improve my quality of life? If yes or possibly yes then may be worth considering but the best person to work this out is yourself!

Everyone's affected differently and there are differing degrees of severity.

Ian123 profile image
Ian123 in reply toStarbys

Shopmobility is a good try before you buy I found that scooters were not practical the effort required for steering was more than I could do. Also an opportunity for getting your head around using some help without a big investment in equipment :-)

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