To wonder about wheelchairs and the NHS?

[RubberTreePlant]

It looks as though DSis is getting to the point of needing a wheelchair. Maybe a powerchair. (Degenerative condition).

Reading between the lines, her GP is pretty useless and she's not due to see her consultant until next year. DSis is quite reserved, almost timid and doesn't like to ask for things or advocate for herself.

What's suppsed to happen with wheelchairs and the NHS? Shouldn't they at least be providing OH assessment and advice? Who does she need to see?

I'd like to help her advocate for herself a bit. Also; She's not the only one in the wider family with the condition, so several of us are likely to need to know this stuff eventually.

Be aware that some PIP assessors mark claimants needs down if they've paid for their own mobility equipment, home conversions, incontinence services or carers, even if they where originally prescribed/provided.

There's a mismatch between austerity cuts forcing the disabled to use PIP for absolute essentials that used to be provided, and assessors believing if it hasn't come via NHS or SS it's not a genuine need.

For the love of God, though! That's outrageous.

When my Nana needed a wheelchair we ended up buying one for her and the ot checked it was ok for her to use, because the services around our area said it was a 6-9 month waiting list to get one depending on the urgency of your case. She had just had a foot amputation and wasn’t allowed to walk until it was fully healed and she still was told it would be that long of a wait. God help anyone who can’t afford to buy their own round this area to be honest.

Has DSIS said she wants a wheel chair?

She knows she needs one. Her walking range is down to a few steps at a time, with crutches, and she's getting depressed. Obviously, it's not a cheerful waymarker.

Be aware that some PIP assessors mark claimants needs down if they've paid for their own mobility equipment, home conversions, incontinence services or carers, even if they where originally prescribed/provided

Urgh really? I have a bloody Pip assesment soon it is changing from mobility to PiP and i buy a few medical bits and pieces because it is easier for me I will have to watch what I say !

Admitting you need a wheelchair is hard but since I got mine it gives me more freedom to take part in life.

My referral to wheelchair services went through, but took so long that I bought my own. I then cancelled my referral, explaining why. Only problem is I now have to explain that my chair wasn’t “prescribed” 🙄

Initially I bought and paid for my mum's wheelchair and at one appointment the GP was surprised we hadn't been issued with one. I spoke to the receptionist and made an appointment for the district nurse to call. Mum was weighed and measured and referred. It took about 12 weeks and the wheelchair is very simple but hard working.

When a couple of parts wore out I called the department and within a week she had a replacement chair.

They said that there is no way that she would be supplied with a power chair but that's ok because mum won't go out without me and I push.

RubberTreePlant

My PIP assessor said I could walk with no difficulty At the first appeal they said I could walk because I can drive a car and that needs you to have legs that work. I'd explained about my hand controls and lets be honest would you pay £1500 adaptions if you didn't need them?

OP

Yes red cross hire out chairs, I used one before I got my chair, there was a £10 deposit that was refunded when it was returned, I didn't accept the refund and asked them to take it as a donation.

Depending where you are you may have a 'centre for independent living', mylocalone gives out some items and you can get smallitemson a drop in basis,you can also make an appointment with an OT to be assessed and try equipment,they will give advice about where to buy equipment and let you try different things.

Also is it a chair she needs? A scooter might be more suitable and cheaper.

Op, there are other alternatives, wheelchair services will only provide a powerchair if your home is adapted for it and you're a full time user. I also have a degenerative illness and I use a mobility scooter, its small enough to go in the boot of my car, using a hoist.
I can manage in my home with my sticks and other things (walls, doorways furniture 😁)

A scooter was much more affordable for me, it cost under £1k rather than the £3k a powerchair would have been, and I paid it off monthly on a credit agreement.

I did initially have a manual chair but needed to be pushed and that was soup destroying, my scooter gave me back my independence.

Soul destroying not soup!! 🤣

Normally a GP would refer to the wheelchair service where an OT will access your DD needs. Some offer a voucher scheme towards a chair. A community social service OT who would likely to be involved in home adaptations may also be involved ESP if ramps are needed but they are separate departments with specialisms. Whizz kids is a charity that provides assessed for chairs but it has a long waiting list.
You may want to hire one for example a holiday to test drive it as an option and see if it makes a big difference for your DD.

Sorry if I've missed the information but when you say 'she's not due to see her consultant until next year', will that be for a first appointment as an outpatient or a follow up? If a follow up then it may be possible to call the consultant/clinic and speak to the medical secretary, explain the situation and ask for a referral to OT or an earlier appointment. If it's a first appointment then you might been to go to the GP with your daughter if she's happy for you to and, as you say, advocate for a referral to OT or a more urgent appointment if your GP says the OT referral needs to come through the consultant.

If you've not already then it might be time to engage with the local branch, if any, of any charities that specialise in the degenerative condition to see if they seem helpful.

Good luck.

We are about to replace my daughter's motability car. There was a leaflet came with the motability letter. Motability now offer a wheelchair lease as part of the motability car lease agreement which costs £100 for the term. Well worthwhile contacting motability to see of this can be added to the current car lease.

So as others have said..

She needs to outright ASK (insist) on a referral to Wheelchair Services.

Depending on where you are, that could be a fair wait (I was referred again in december. I am still waiting, I have a chair but it does not fully meet my needs now, I am hurting myself further continuing to use it, which they know...)...

Then, again depending on where you are, the wheelchair may only be provided in specific circumstances... and it ISN'T down to 'need', its usually whether you will use it to access work or education - if she is doing neither then certainly in my area, she would not get.

This is for manual chairs - for a powerchair she would need to demonstrate she has to use it inside the house, as well as the requirement for work/education (again, here, Worcestershire, other areas may have different rules).

The reality is, she could if referred NOW, be waiting 18 months to see wheelchair services, only to be told that if she only needs to chair to go shopping/socialising and if she cannot use it indoors (say, house too small), she can't have one...

So in all honesty, whilst I would ask for the referral... I would take her to somewhere good like RGK in Stafford, and get her a suitable chair made for her. RGK (and other wheelchair specialists, NOT mobility shops, but people who MAKE these chairs, custom) will find out her needs, take exact measurements and build a chair to suit her.

They aren't cheap, mine was 2.5K however it has kept me mobile for 5 years now.

Yes if you buy the chair either wiht an NHS voucher or entirely by yourself you are responsible for the maintenance... but if you effectively borrow an NHS chair, you will likely end up with something that doesnt meet her needs, breaks a lot, they take ages to fix them too..

Oh and the idea that the NHS will measure up and provide a suitable chair.. is hysterical. The one they wanted me to have i couldnt try in my size... i could not MOVE it myself it was too heavy and clunky and did not fit. Their plan was to order one in my seat size and id have it delivered and if it did not fit..... tough luck!

As above,you need a referral to wheelchair services. Though having been through the process with DD, I'd say don't waste your time & find another way to fund what she needs. What we were offered in the end was dreadful. It was meant to be made to measure, but was so small that it was very uncomfortable for DD & too heavy to manoeuvre herself. That was just a wheelchair, not a motorised one. We were told that they don't really offer motorised ones anymore. After waiting a long time & relying on one hired from the Red Cross before assessment, we turned it down & bought one.

Honestly, don't waste your time with the NHS for a wheelchair

I meant to add, they measured her very badly, I even pointed it out to them at the time, but was shot down in flames

She should ask to be referred to wheelchair services, in addition it's possible to lease one through motorbility if she is at the high rate - you may wish to ensure she's getting what she deserves benefits wise too if she's not someone who looks into these things.

Not sure if anyone has mentioned this but go on to NHS England website as legislation recently came in for the 'right to have' a personal wheelchair budget. PWBs can be paid as a direct payment, notionally (ie the finances stay 'in house' within the NHS or as a 3rd party budget (ie the money is paid to an approved 3rd party service who purchases the wheelchair on your behalf). Your local CCG should have a process in place but it's still early days. NHSE are absolutely promoting this as the NHS moves towards more personalised care.

I found the free wheelchairs very hard going as you need good upper body strength and strong wrist joints - I have EDS

Perhaps she should look into one of those little mobility scooters that fold down to suitcase size - they advertise several on tv
www.luggie-scooters.com/
www.efoldi.com/

Or if she wants to keep her mobility then perhaps she should look into a good 4 wheel walker with a seat. I have had many different kinds - the best was
The Trionic - I ordered online www.trionic.se/sv/rollator-walker-12er-c-15/
Let's go out - a lightweight walker that I keep folded in the car for quick errands www.trustcare.se/g6,en,lets-go-outdoor-rollators.html

Something you need to think carefully about is how she will use the chair. Most powered chairs can not go into a car unless she has an adapted car with a ramp.
So she will only be able to use it for short journeys from her home.

These journeys will also be restricted by - drop kerbs being opposite each other. Powered chairs have to be straight onto the kerb to go up them, and can only manage small rises. Many roads do not have drop kerbs opposite each other meaning the wheelchair user has to take a 'run up' from the middle of the traffic.

Are there places close to home she wants to get to - are they accessible?
are the pavements wide enough for a chair,
do shops have slopes to get in,

are there barriers on alley ways designed to slow down bikes which are impossible to manouvere around?
Does the park have a 'kissing gate ' entry - again impossible in a chair.

Is she likely to go out alone or with someone -you can feel very daunted and self concious while getting used to being someone who users a wheelchair. If there is someone fit and able with her a chair that fits into the boot may be worth a thought.

Scooters are an option if her shoulders and arms are unaffected they are generally better on the road, but many are not able to go in shops.

Think about how her body is now and the future, as far as controls go.

Chairs also have a massive variant in how far they can go on a battery charge, how steep a hill they can manage and what sort of road surface they can cope with - gravel is impossible for many chairs so if she has a gravel drive she will need to have a path laid so she can get out.

Also does the battery remove easily to be charged or do you have to get the whole chair close to a plug - not great if the wheels are mucky or if access to the house is tricky.
Where to store it inside is also worth a thought.

We have a Whill C its very new to the market and expensive but is by far the best of the 4 we have had.

www.tgamobility.co.uk/range/powerchairs

It has given us far more freedom than we ever thought - but there are still restrictions caused by the town infrastructure. Helpful planners putting road sides into the pavements for example.

It is something that needs a lot of research and thought. Hopefully you will be able to access support and funding.

Independent living centres can be extremely helpful too.

I'd be very careful about using higher rate PIP for anything she's dependent on.

If it's stripped everything has to go back and you lose your independence all over again.

I was using mine for equipment and funding to access education and work.
Have had to abandon a degree in third year, and a scheme that was very hopeful for getting me into work.

@namechangedforourprivacy , that's awful. Were you able to freeze your credit?

I can see that this is all even more complicated than I imagined.

Something you need to think carefully about is how she will use the chair. Most powered chairs can not go into a car unless she has an adapted car with a ramp.

How about a hoist?

Thanks @PanannyPanoo that's all very helpful. She works on a large campus. I think her arms are worsening as fast as her legs and that's part of the problem, but she's not very keen to analyse it all.

I need to make notes and sleep on all this new information.

Then, again depending on where you are, the wheelchair may only be provided in specific circumstances... and it ISN'T down to 'need', its usually whether you will use it to access work or education - if she is doing neither then certainly in my area, she would not get.

This is for manual chairs - for a powerchair she would need to demonstrate she has to use it inside the house, as well as the requirement for work/education (again, here, Worcestershire, other areas may have different rules).

That's very harsh.

She does work, and is struggling at work. But beware the postcode lottery rhen?

Lots of good advice here, to add from my own experience, as a pp said if needs be try Red Cross as they can help at least in the interim, for a small donation. For my dad when we needed extra medical aids, they plugged the gap while we waited for the GP (who hadn't even seen him since his diagnosis 3 months earlier... now 8 months, still not seen him) to sign off what was needed. In terms of a chair, we went private and got a manual chair (sufficient for my dad's condition, in addition to the privately bought walking frames). It just wasn't worth waiting for NHS referrals when his quality of life was at stake. Same with his hearing aids. I would definitely say if you/your DSis can afford to fund it, it is worth it for her quality of life.