Wheelchairs

saving_pennies

Hello,

I have had CFS for about 16 years. Recently the doctor thinks I may possibly have something else (yet to be diagnosed) that is causing much pain in my back, strange sensations in my feet and hands, and possibly contributing to me stumbling and falling frequently. I've been using crutches for many years and I'm finding it more difficult to get about on them. My GP is going to refer me to the NHS Wheelchair Service as well as investigate the other symptoms I have developed. My GP told me that the referral to the Wheelchair service will take a long time, so I thought I'd have a look at wheelchairs for myself online.

But where do I start? So many websites come up when I do a search for wheelchairs and there are so many different types of chairs. I know that it will be difficult for me to use a manual chair, so I am looking at powered chairs - either the electric chairs or the manual chairs with a powerpack on them. I also need something I can get in and out of my car. I have an adapted motability car and have another year on the contract before I can get a new one. I'd prefer a wheelchair that can be folded up to go into the chair rather than one that can't fold, as then getting into friends cars etc will be easier.

And then of course there is the expense. I don't know how long I would have to wait for NHS referral to go through. My GP really stressed that it takes a long time which makes me think it will be months. I am struggling now. Does anyone know of organisations or charities that can help with cost of a wheelchair? I know motability give the choice of a car or wheelchair/scooter, but I have the car and will continue to need the car so can't go via that route.

Any suggestions or comments would be gratefully received.

wolfehouse

depending on where you are you might be able to get loan of a 'standard' chair
in scotland: disabled trust for scotland have a deal with the nhs and loan out chairs to people waiting
for one from the wheelchair service
maybe your gp can ask the wheelchair service if there is a similar arrangement near you
the red cross will loan chairs on short term basis (a couple of weeks)
and you can 'hire' (free) scooters and chairs at various shopping centres through the shopmobility sites.

if you are in england maybe someone else will be able to better tell you their arrangements

tanith

Be aware that electric chairs can be very heavy/impossible to lift in and out of cars , some of them don't fold either..

zzzLazyDaisy

I second this. I got a lightweight powered mobility scooter as it was supposedly lighter than a powered chair and easier to get in and out of the car. Although it was great and gave me a lot more freedom, I was unable to get it in and out of the car without assistance, so it was very limited in use.

sunnyone

saving_pennies wrote: »

Hello,

I have had CFS for about 16 years. Recently the doctor thinks I may possibly have something else (yet to be diagnosed) that is causing much pain in my back, strange sensations in my feet and hands, and possibly contributing to me stumbling and falling frequently. I've been using crutches for many years and I'm finding it more difficult to get about on them. My GP is going to refer me to the NHS Wheelchair Service as well as investigate the other symptoms I have developed. My GP told me that the referral to the Wheelchair service will take a long time, so I thought I'd have a look at wheelchairs for myself online.

But where do I start? So many websites come up when I do a search for wheelchairs and there are so many different types of chairs. I know that it will be difficult for me to use a manual chair, so I am looking at powered chairs - either the electric chairs or the manual chairs with a powerpack on them. I also need something I can get in and out of my car. I have an adapted motability car and have another year on the contract before I can get a new one. I'd prefer a wheelchair that can be folded up to go into the chair rather than one that can't fold, as then getting into friends cars etc will be easier.

And then of course there is the expense. I don't know how long I would have to wait for NHS referral to go through. My GP really stressed that it takes a long time which makes me think it will be months. I am struggling now. Does anyone know of organisations or charities that can help with cost of a wheelchair? I know motability give the choice of a car or wheelchair/scooter, but I have the car and will continue to need the car so can't go via that route.

Any suggestions or comments would be gratefully received.

It should be pretty quick to get an assessment at wheelchair services and for them to get a chair ordered for you but most wheelchair service dont offer powered manual chairs.

I have a lightweigh manaul wheelchair and a powerchair which has a fold down back so that it can be easily loaded into a car via ramps or hoist.

You can get out of the motability contract easily if you need to, you will lose the good condition bonus but its worth it if the car is no longer suitable for your disability.

I did a post recently about getting the right wheelchair services assessment for someone who cant self propel, I will look for it and copy it here but the basics are dont get fobbed off if they ring you out of the blue and say your new wheelchair is getting deliverd because it means that your getting a bog standard wheelchair thats no good to many people and to insist on a complex needs assessment, requesting this should be at the same time as refusing the wheelchair which you wernt assessed for.

formaldehyde_perfume

I still haven't asked for my wheelchair assessment yet, my next GP appointment is on the 8th but I fear she will want to talk to me about my ESA appeal and we won't have time to discuss it properly Sounds like it's going to be a hard slog as usual.

I'm starting to think that if/when I win my ESA appeal and they backdate it, I would probably have enough to get the sort of chair I'm thinking about. I thought it would be quicker to go for a wheelchair assessment but perhaps not.

OP - I'd like to hear back when you do actually get assessed and what your experience was like.

sunnyone

formaldehyde_perfume wrote: »

I still haven't asked for my wheelchair assessment yet, my next GP appointment is on the 8th but I fear she will want to talk to me about my ESA appeal and we won't have time to discuss it properly Sounds like it's going to be a hard slog as usual.

I'm starting to think that if/when I win my ESA appeal and they backdate it, I would probably have enough to get the sort of chair I'm thinking about. I thought it would be quicker to go for a wheelchair assessment but perhaps not.

OP - I'd like to hear back when you do actually get assessed and what your experience was like.

Powerchairs cost a fortune, my current one without the accessories is 5k and all I have to do is insure it, cheaper ones are available but if you look at above basic features the price ramps up, I wanted a compact powerchair that fits in a people carriers boot and thats what I got but I was offered many diffrent powerchairs and they have agreed to a crash rested powerchair if I can afford a drive from wheelchair WAV.

7roland8

I second this. I got a lightweight powered mobility scooter as it was supposedly lighter than a powered chair and easier to get in and out of the car. Although it was great and gave me a lot more freedom, I was unable to get it in and out of the car without assistance, so it was very limited in use.

Agree - I have had cfs for 14yrs now. Firstly the only way I could get out was to visit nearest town and hire electic chair for a few hours.

Then, when not getting better, decided on a small scooter - but I bought a trailer with tailgate to go with it - so I would just drive it into the small trailer - rather than try and lift the batteries - which was too much for me. Managed that way for many yrs - so long as I didn't have to reverse the trailer - but I always managed - trailer only about 3x4ft.

One suggestion - you can buy a smal scooter for around £500 - great for going round shops - and pals can throw it in their boot - but might be too heavy for you to lift - but goes into three pieces and quite small. This is not my model but a similar size - http://www.discountscooters.co.uk/extra/pages-productinfo/category-65_66/product-357/mobility-scooters-travel-scooters-shoprider-cameo-3.html?zenid=1kpb9nptp6vug6ve0tnm0uq021

You will find nothing fits all the things you want - it'll be a compromise with cost, weight, comfort and size.

I would think an electris wheelchair would be almost imposble to transport - unless you had one of those adapted vans you could drive it into.

Have you contacted or joined your local ME/CFS Association? They may have wheelchairs for loan (I think my lcal one does) - but a manual might be way too much work t use.

Good luck - and f you need more info just ask.

saving_pennies

Thank you everyone.

I think I'll give the GP a week to do the referral and then contact the wheelchair services (I know where they are based so finding a number should be easy enough) to see how long they will take to assess me and whether they can loan a wheelchair in the meantime. I guess if they can only loan a manual chair then I might have to look into increasing the hours my carer can be with me so she can push it, until a more suitable solution is found.

I think I need to really think about how I will get outside in the chair. At the moment I am thinking I need a chair indoors for the days/times I can not get out of bed due to balance and pain and fatigue etc. I only go out when I feel able to, i.e. when I can walk with crutches, and then I only walk to the car and park as close as possible to entrance doors of wherever I am going, and local shops do have wheelchairs/scooters to use.

I do want to be as independent as possible and get a chair that will last a long time, so maybe I do need to look into a car that is adapted so I can drive from the wheelchair.

sunnyone - Thanks for the pointers re the assessment. I will definitely ask for a complex needs assessment. A manual chair will be of no use unless someone can push me as I will not be able to propel myself. I am a little shocked that they would offer a wheelchair without assessing someone's need for a wheelchair. What is a "crash rested powerchair"?

7roland8 - I've not joined the local ME/CFS group. I know how to contact the local one so will do that Monday.

Thanks again everyone.

lin_c_2

Doc just referred my daughter for new wheelchair and it took about 3 or 4 weeks for delivery (Glasgow area)
Also if your current motability vehicle isn't suitable due to a change in your circumstances ie using a wheelchair contact Motability and ask to end your contract early and order more suitable vehicle, they'll do this without any problem.
I handed car back after only one year because it was unsuitable and I was paid the £200 good condition payment. Now have more suitable car to suit my daughter's needs. :j

7roland8

Hi again - you may need to think of two items if you are wnating a power chair to use at home.
The specifications for one you use a lot (comfort etc) won't be the same as a lightweight scooter that fits in a boot. Although initially even using a scooter in the house would be better than nothing.
Those vans are the best I've seen - the back door opens and the wheelchair goes right in - and presumably you could drive from one too. I've not had a mobility vehicle so can't comment on them.
All very nice but lots of money involved - I used to be envious whenever I saw one! But we coped with our little trailer (but that was £500). Bugbear was having to have two parking spaces one behind the other - but we always saw things as challenges to master (usuaully just me and young son of about 8 then).

UPDATE - just had a thought - how about signing up to FREECYCLE http://www.uk.freecycle.org/ - most counties have one. Then you can post a 'want' for a scooter or wheelchair. Might be a long shot but you may get one for free for the time being.