Wheelchair services

[earthwitch]

Has anyone managed to get a wheelchair through NHS wheelchair services when they can still walk most days?

I'm had another day today where I just ended up pushing myself too far with walking/standing/sitting at a 4 hour community event and thought that today would have been a good day to have had a wheelchair. I usually use crutches, and even though I have bought my own ergonomic soft grip ones, they are still hard on my arms and back. The only thing is that I did buy a wheelchair a few years back when I was first really bad (before I realised I had spondyloarthritis so wasn't getting any treatment for it at all) and could barely move my legs, but it was just a very ordinary and quite clunky wheelchair, so self-propelling was quite tiring on my arms. If I got another, for it to be useful to me it would have to be a very lightweight one I could get in and out of the car myself, and that wouldn't be hard to self-propel, and it would need to be custom fitted to make sure it didn't wreck my back and sacroiliac joints. I couldn't self fund, so I'd have to get it through NHS wheelchair services. A guy who worked in wheelchair assessment told me a few years back that you don't need to use a wheelchair all the time to be eligible to get one through the NHS, you just have to use it "regularly".

So, does anyone have any experience of getting referred for a wheelchair, and if so, did you get one that really worked for you? Also, does anyone have any experience of getting a lightweight wheelchair through Access to Work, if you didn't already have a regular wheelchair through the NHS?

[allanah]

No but I would now be interested as I'm getting stuck in the house more and more at the moment . If I find out before you I will let you know x

[Hidden]

you can get one through your gp they are either self propelled or small wheels you need to tell them you height and weight but they will be heavy I understand there is a long Waite for hospital ones hope this helps

[Hidden]

Hi Earthwitch

I had a bad spell a few years ago and I was staying home at weekends while my hubbie went out with our son. I confided in my then lovely gp and told him I thought I would end up depressed. He filled in a form with my height and weight and about 2 weeks later a community nurse came and "assessed me". She just asked me when I would use it, what type I needed and we chatted over a coffee. Then about 2 weeks after that it was delivered. I get a letter every year asking if I still use it and does it need servicing. I haven't been in it for a while but loathed to give it up. I don't know if they have light ones. My husband pushes me but as time goes on I think he will find it hard to get it in the car. I would start with your gp. Best of luck kikideelili x x

[earthwitch in reply to Hidden]

I've now found some information that looks like you can get a custom fitted lightweight chair if you meet additional criteria, and if the referring person says you need a full assessment for that (rather than just the regular send-the-measurements-away and wheelchair delivered without you trying it service), but I'm not sure if I would be assessed as meeting one or two of the points. I believe that Access to Work can sometimes help you get a superlightweight chair if you can drive, and if it means you can be independent in getting to work, but I'm not sure if you have to have an NHS assessment first for that, and whether AtW would pay the full cost if I am only working part time. I've had one of the regular so-called"light" folding chairs in the past and it was just too heavy to self propel, or for me (or most of my companions) to put into the car, and it also wasn't a good fit for me (which also made it more difficult to self propel) -so I definitely don't want one of the bog standard NHS ones.

I think I probably really do need to come clean with my GP and tell them how often I am making the decision not to go out because I can't cope with walking (or more correctly, I can't cope with the nerve pains I get for days after walking) - and also reinforce that because I live on my own I do need everything I can get that will keep me as independent as possible.

[olive2709]

If GP local nhs can't help have a look for a site called freecycle in your area people put thing they no longer need and give them away .check out Facebook in your area just put town name followed by sale/free sounds daft but you might be suprised

[Hidden]

You will need to arrange a visit of the Occupational Therapist, see the GP he can arrange if required

BOB

[Hidden]

You will need to arrange a visit of the Occupational Therapist, see the GP he can arrange if required

BOB

[cassieP]

I was diagnosed with spondylitis when i was 13 being in a wheelchair made my symptoms worse. I recomend going to physical therapy and ditching the crutches for sure! The crutches for me were unbearable because they would let my back hang causing spacing between my vertebrae and further agrivating my spine. Forcing myself to do the stretches and movments they prescribed, strengthening of the core and smaller muscles of the back and neck is the only way I've found any relief. On my worst days they have given me a belt that has adjustable straps that tighten around to compress my sacroilliac joints. Everyday I also use my hard foam roll to adjust any parts of the sacrum that need to be mobilized. Doing "birddogs", leg lifts, and other low resistant (non painful) exercises have given me back so much more freedom.

[earthwitch in reply to cassieP]

Yes,I know inactivity is the worst thing possible for AS, and I do do all my stretching exercises regularly. I actually have good muscle tone, and can still rise out of a chair without using my arms. Unfortunately 40 years of AS (with only about 3 years of treatment in that time) has caused neurological damage so I now have an ataxic gait and very poor position sense in my legs (among other things) which means I can't ditch my crutches as I have to "swing through" with my left leg - or my lurching walk will just throw my back out more. I did replace the awful NHS crutches with Kowski ergonomic soft grip forearm crutches, which are also a lot lighter, and that did make a big difference, but the lower body paraesthesias and other nerve pains are getting worse now, especially after standing or walking, which is why I'm considering the chair, for anything where I need to walk more than about 20 yards. I wouldn't be able to stay in it for more than 30-60 minutes max. but if it saves me a bit of discomfort from walking it would be worth it.

[cassieP in reply to earthwitch]

Definitely understandable. I have some nerve damage myself already with only having it seven years.

Have they done sergery to remove debris? This may help a lot.

Even though it has been a long time with out treatment I would still ask if they have put you on an imune suppressant? It will help with fatigue and inflamation.

I am not in the same situation but I have been in a support group where many people have had braces for their back and other joints. Coupled with the crutches it might be a better way to lessen the amount of sitting while still helping your gait.

[Hidden]

Hi earthwitch,

not sure this will be applicable for you but it may help others.The Motability Scheme enables disabled people to lease a powered wheelchair or scooter using their higher rate mobility component of their Disability Living Allowance or enhanced rate motability component of PIP. Visit the Motability website for more information:

motability.co.uk/scooters-a...

Also some charities offer wheelchairs for short term loans or for hire. I know that the Red Cross do this and I have put a link to their website below for you to look at:

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

If you know you are going somewhere where you could be standing for a while then this could be a possibility for you. There may be other charities in your area that offer a similar service. Hope this helps you .

Regards

Beverley (NRAS Helpline)

[earthwitch in reply to Hidden]

Thanks Beverley, but I already have a motability car (chosen to give me a good seating position, automatic, small, good mirrors, etc).

As far as hiring wheelchairs goes, that wouldn't work as the ordinary ones just are not comfortable enough or light enough for me to self propel, and I want to be able to go out on my own and not rely on others to push me (I live alone). If I do get a wheelchair, it will have to be an ultralightweight one, and it will have to be custom built so it can be perfectly fitted to my body (not just for comfort, but to ensure its as easy as possible and energy efficient to self propel) - I know these "energy efficient" chairs are available on the NHS but only under special conditions where it will enable independence and where the person can't use a regular wheelchair. What I don't know is whether I would be eligible if I am only going to use it part time.

For the same reason, I couldn't buy a second hand one, because even if I found the right model or type of chair for sale, it would have been built to fit someone else, not me.

I guess my needs (with AS and neurological problems, living alone, and having work that isn't just in one office base) are a bit different from most folk here, who would likely use a chair occasionally when they were out with family and had someone who could push it or lift it in and out of the car for them.

[Hidden]

I hope you manage to get sorted with a suitable wheelchair. Would be very interested to hear if you do and how you managed it as it could help a lot of other people. Good luck with that

Regards

Beverley