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My wheelchair seating/cushions experience
I think this is going to be one of those sagas which may be useful for someone and if not it will help me navigate the frustration!!
Problem: Sore bum from wheelchair cushion which could cause pressure sores (and sometimes hurts so bad I nearly pass out). I had to cave in and book an appointment with the wheelchair clinic – who I try to avoid because we don’t see eye to eye on need versus budget/usefulness.
Ok, so I went for pressure mapping and took hubs along for the lifting/transfers. I was expecting about 3-4 transfers trying out cushions. It turned into about 15+ with no solution. Each cushion had bright red hot spots on the right side (bony bit) from my scoliosis. I explained my hips also twist/rotate/dislocate and they kind of grimaced.
At first they said they didn’t like how I was lifted (we’ve been down this one before). They also don’t like doing anything to my chair – it’s a private chair with modifications.
The deal so far is – I get an NHS chair and they can fit me with cushions/headrests/backrests to ease the pressure. Or if I have a private chair they are not allowed to adjust any attachments (headrest/backrest etc) and are unlikely to be able to test out a cushion for effectiveness (and won’t give me one that they don’t see eases the pressure).
Third option, stay in bed (yes they said that), until bum doesn’t hurt.However, if I have their chair (or part part voucher) – they can adjust it but I must not alter it in any way – like put car attachment points onto it for going in my WAV, buying my own headrest which is not available on NHS budgets, having a USB socket to power my phone etc. I’d also be limited to chairs they have on their books – all but one are too high for manual transfers and their seating ideas mean I would not be able to lean forward like I do now to type, help my breathing and be able to move the pressure away from my bum – which they agreed was important).
I’ve got to go back at some point to try out more cushions and they have to check out ‘grey areas’ of what they can and can’t do.
The thing is, I know other gel cushions exist on the market – but the NHS won’t fund them. We can’t buy privately because we have no idea if they work and wouldn’t be able to tell if they were right for me just by sitting on one for half and hour.
Also, if they get me a new wheelchair – I can only test drive it around their workshop for a few moments before I have to say if it’s suitable – it might not even get around my house or I might have trouble steering that I won’t know about until I put it through it’s paces!
Oh gosh – here we go….
Re: My wheelchair seating/cushions experienceThis is how so many of our issues come about – a complete lack of sense and flexible approach to equipment for those with complex needs. I have had the same in the past with wheelchairs that I’ve been doubtful of but convinced to try and then the whole process is a waste of time, money and resources. My last wheelchair experience was like a breath of fresh air and is due to my physiotherapist at Kings and my GP pushing for my pct to send me to a specialist rehab centre.
It doesn’t just apply to wheelchairs but to the whole system of support that so many of us rely on to get it right. I know what you mean about needing the energy to complain – I am at the point where I need a few days off from phone calls and telling the saga to yet another person!
I can’t believe one option was to stay in bed! No, I can believe it actually! Isn’t it the case anyway that you need a long term solution to your sore bum and in fact don’t want to get one in the first place? I feel like saying to my local authority that I will need regular physio or massage until the bed issue is sorted!!
A complete lack of foresight and failure to put your needs at the heart of the matter – it makes me cross and I realise how often this is happening.
Hope your wheelchair service see sense soon!!
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams
Re: My wheelchair seating/cushions experienceI knew this would be a saga! I’ve been blogging about it on my formal blog.
If you want to avoid the rant – here is the end result. Wheelchair clinic don’t use the voucher scheme, will only give me a cushion (to avoid sores) if I have a new wheelchair. I have to have one of their chairs and only one meets my ‘prescription needs of a low seat height’, this chair won’t go in car, wheelchair service say just don’t use the car then. Not **** likely after I’ve just forked out nearly £500 on insurance!!
….
Only wanted a cushion for current wheelchair. If I don’t take their prescribed chair they say I should stay in bed to avoid pressure sores… and frequent forum readers will know I don’t have such a bed and have no wish to stay in bed forever.
Well, there is another option – I could have a bigger (higher) wheelchair and just use my hoist – but I’m still weight bearing with husband and want to continue to do so outside the home as long as possible for the loo (plus, without a profiling bed I can’t even use a hoist to get into a wheelchair!). They agree that if I want to try and do manual transfers for as long as possible then that is good – especially for getting in and out of bed.
So it looks like I will have to accept the chair for indoor use and buy a private chair and possibly cushion (or use existing chair and buy a new gel cushion privately) to avoid them altogether for outside!. Yes they are legally responsible for supplying a cushion – but won’t prescribe one into a chair that does not meet your needs in other ways (which could reduce the effectiveness of any supplied cushion). So they would fit one into a brand new private chair (not existing one as my current one has a rigid back).
Sooooo frustrating. Really thought we could get a voucher until we discovered they don’t do them in Kent.
The chair is an Ibis by the way and it has the most stupid car tie down points in the history of chairs?? I wasn’t surprised to find out they won’t supply lights neither so no going out after dusk on the road…. good job I’m not a creature of the night. Glad really as I’ve never got on with lights – hit one once and it flew off and went down the toilet lol. Never to be seen again ha ha.
I suspect I will get a private chair in the end… they want me to go back to them for another consultation in September so I guess that will be another blog post in the making :-/ are wheelchair services actually fit for real life application and actually making life better or even more restrictive than ever before?
Re: My wheelchair seating/cushions experienceI wonder if your OT can help with the gel cushions in terms of contacting suppliers and seeing if you can try them out – surely manufacturers want to sell their products or get them recommended as they’re specialists in a niche market. Ideally it would be done through wheelchair services but it doesn’t sound like the person you’re dealing with has much experience thinking out-with the box – pure luck on who you’re stuck with. But if you can find the right gel cushion after trying them out you might be able to petition them to get it for you.
For their chairs I’d get your consultant/ MD specialist to speak to them outlining what is not suitable for your needs in maintaining your independence and the mobility you have. Being stuck in bed does not prevent sores and is a surefire way for you to lose mobility through you’re not having to balance as the chair moves etc on a daily basis!
Oh and it reeeally annoys me that they keep questioning how you’re transferred, if your hubby is hurting you you’d tell him. It’s like when they used to try and help me walk by holding me under my arm and effectively pushing me off balance because they ‘know best’. It’s how they’re trained, may as well just push me on the floor and be done with it!
RE: Lights. Have you tried the reflective tape that you can wind around various parts of your chair? I prefer that as I keep catching any ‘attachments’ on things when I’m getting in and out.
Hope you get it sorted and make some leeway before going back to them.
What about second breakfast?
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Re: My wheelchair seating/cushions experienceOh good grief
aren’t we made to feel utterly bothersome, totally uncompromising and down right winney when we go and try for equipment.The NHS is now a catalogue supplier, and that catalogue is a contracted-out cheapest bidder one at that. Disability i not a catalogue condition so you can pretty much guarentee the items wil only perform 40% of the task for 40% of its users. By saying ‘stay in bed’ or ‘don’t go out in the car’, that is the same as saying “Can’t drink from a up? Don’t drink” and what happenswhen we die of dehydration …… bugger all :evil:
Budge over Crip, this ranting soap box is gonna get crowded.
I'm always the animal, my body's the cage
I blog about nothingness www.amgroves.com
Re: My wheelchair seating/cushions experienceI just couldn’t believe it. I can’t buy the specialised J seating as they only take orders from professional registered bodies so I could never get a good one. The wheelchair clinic won’t buy a cushion (or assess for one) until I have a chair to put it in!
I can’t say just put it in my current chair because (and here the logic is very barmy):
My chair seat base is 5-10 mm shorter than the cushion I have (and what they could get in) – they say this few mm each side is squashing my current cushion and making it less effective at distributing the pressure – causing the pressure sores.
I do not believe this one bit. They say that if I used this cushion even in a newer chair I would get better relief – we are talking a few mm of foam each side of my bum!! I have clothes that push the cushion down more than this – what next, don’t wear clothes!!Then they said the cause is my bony bits of my pelvis hitting the ramp (not sure if you know what this bit is as I didn’t – my bum sits in a square bowl shape that is hollowed out of the cushion and filled with gel – the sides of the bowl that faces the front of the chair is the ‘ramp’). This is not correct because we saw the same computer screen as them and the pressure from the bony bits was a good few inches away from the ramp!!! Also they mumbled that it wasn’t hitting the ramp to each other so I think they are making up things now.
Then yesterday they said it’s because I can’t sit far enough back to put my whole bum in the bowl shape in my current chair – I don’t agree because we moved my cushion forward, sat me more in the bum cup and the computer screen (and where I could feel pain) still said it wasn’t giving any pressure relief….. so the computer assessment and my own feelings (and where you see the indentation on the cushion when i get up) all point to the fact that it’s nothing to do with these factors and i just need a new, differently shaped cushion!!
They are obsessed with thinking a new chair will mean better pressure relief – and a new chair would be good because I really (and clinically) need to try a tilt in space to see if that helps as well as a better cushion and side supports – but I want one I can use in the car! As it stands I’m not going to get a chair for the car – so will have to hope that when they give my the indoor one, we can take out the cushion and pop it into a private chair…. what a waste of money.
What would they do if I was still self employed and had to go in the car to work!!
– * agree that high vis tape is a bettter idea than lights although technically i think to go on the road you have to have lights? Not sure – I don’t go out at night anyway so that’s fine.
I had to laugh when they glared at me and said we only have chairs that go up to 4mph – wonder what made them think I might ask for something with more umph :-p
Re: My wheelchair seating/cushions experienceIt really is a case of fumbling in the dark, isn’t it? The ‘service’ peeps have a catalogue and if you don’t fit in it then you do not exist.
Effectively these people have told you to not go out and stay in bed, well ain’t that just peachy. If they cannot provide you with the correct chair then they should be obliged to part-fund one that does. At minimum fund a private assessment.
The systems are all failing the more accute we become.
I'm always the animal, my body's the cage
I blog about nothingness www.amgroves.com
Re: My wheelchair seating/cushions experienceThis whole saga is so frustrating! I felt like I wasn’t being listened too when my chair before last was created. The thing is, it’s your body, you are the one who will feel the pain and discomfort if it isnt right therefore you are the one they need to take the lead from in solving the problem.
There isn’t much that gets me wound up but this sort of thing pushes my buttons! Most of us bids with complex needs can appreciate one adaptation does not suit all and it can be the slightest of tweaks that make all the difference – I have found it difficult sometimes to explain what I need, I just know something isn’t working and with my recent, successful assessment it was a real collaborative effort with them listening and taking notice of all I said. This is how it should be and I think commissioners need to think more long term in their planning and funding. As you point out, you don’t need a new chair and thar money surely would be better spent getting your cushion right!!! Grrrrr
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams
Re: My wheelchair seating/cushions experiencePosted on my blog – but feeling in a better position now thanks to getting to see and try out some wheelchairs last Friday. In mid September will go for an independent/private session with an OT from the the same company to try out some cushions that are available in the private market by sitting in a manual chair just to get the seating right before transferring/applying those supports into whatever chair I choose (or get from NHS).
They were very knowledgeable – ten times better than the ‘NHS experts’. Had no problems with me hopping into different chairs (unlike the clinic who said don’t try out anything without a nurse present). Raced up and down the road at 6 mph LOL. AND with no seatbelt. WHOOOOOOP. And I didn’t fall out or die which is what the clinic seem to think would happen because ‘they know best’. Felt quite therapeutic just doing that!!
It will be another 4 weeks or so until they have an appointment free so in the meantime I’m trying out an old J cushion from the loft – it’s 17 years old (older than I first thought!) but it’s a tad more comfier that what I had. Even if I can shuffle the pain between different points it might keep me going… that is my plan :-).
Re: My wheelchair seating/cushions experience@criptic wrote:
because ‘they know best’. Felt quite therapeutic just doing that!!
Couldn’t you cheerfully just ram raid over their feet and head butt their unmentionable areas … ‘experts’ with that attitude are no help at all and are only expert in p***ing their client/customer/crip off.
I'm always the animal, my body's the cage
I blog about nothingness www.amgroves.com
Re: My wheelchair seating/cushions experienceWell, I went to the nhs clinic last week and the engineer was there. he said they DO give vouchers and we could even top up for for a chair with rise. We were lied to. :evil: So we have said we want this and now the lovely man is ordering me a chair with everything plus mods. HAPPY DANCE. HORRID old wheelchair physio didn’t want the bother of the paperwork humph. Digraceful.
Re: My wheelchair seating/cushions experienceHI Louise
Glad you are getting your issues with your chair sorted. It goes to show if you know who to ask or speak to the right people things can be sorted. Shame everything else in the NHS revolves around money or paperwork these days
Best wishes
GillRe: My wheelchair seating/cushions experience@criptic wrote:
Well, I went to the nhs clinic last week and the engineer was there. he said they DO give vouchers and we could even top up for for a chair with rise. We were lied to. :evil: So we have said we want this and now the lovely man is ordering me a chair with everything plus mods. HAPPY DANCE. HORRID old wheelchair physio didn’t want the bother of the paperwork humph. Digraceful.
Hi Louise,
When you’ve taken delivery of your new wheelchair with mods, and you’re happy with it, it might be worth your while writing a letter of thanks to the engineer’s manager, pointing out the aggro you had because you were told by someone else that they didn’t supply vouchers. It’s not right if people get away with lying just to avoid a bit of work – they’re paid to do a job so should do it properly. They might get pulled up about it and not make the same mistake in the future.
SybyllaRe: My wheelchair seating/cushions experiencecan u post some pictures of chair. im having nhs chair supply problems myself. trying to find the model design that would work for me before i start complaint road
Re: My wheelchair seating/cushions experienceI think it will take many months before it’s ready – It’s going to be a Salsa with seat recline, tilt in space, I’m paying for a riser to be added to go up in height. I am also trying out electric leg rests! basically pretty much everything. The engineer will make arm rests, joysticks/controls panels personal to me so we are just using the basic frame of the chair as a shell.
I’m having small castors to make the chair a bit lower and indoor/outdoor back wheels (the small sort). Their are so many variations for each chair but I’m limited in needing a low height to transfer from standing and not just a hoist.
Then the have to assess/find a solution to hold my back in the right place and the pressures cushion – a long process.
Will post pics when I get something! Meanwhile, hubs is building me a second ‘Kit’ chair with engineered modifications outside of the wheelchair service as a ‘fun’ project (details will be on my blog). I think his chair and my private clinic wheelchair cushion will be sorted first – sort of doing that out of fun and desperation to get rid of the pain from my current chair. Quite a lot of people we know are building their own chairs from parts.
It’s the top managers that decided to not tell me about the Vouchers – so glad the engineer brought it up but I bet the managers were seeing red!
Re: My wheelchair seating/cushions experienceAs we’re on the subject of wheelchairs here, did anyone see the BBC documentary “My Perfect Wheelchair” about the man in Scotland who has designed a wheelchair [called Carbon Black] which is a bit lighter in weight than anything else on the market? The selling price was astronomical – something like £8,000 ! It was for people who propel themselves so I’m not putting my name on the list for one!
Syb
Re: My wheelchair seating/cushions experienceYes I watched it. The whole process looked looked like a complete nightmare. I don’t want to sound negative but they were so expensive and not tried and tested and the company seemed to be run by just one man so I think buying one at the momsnt is quite risky in terms of maintainance and repairs. Seems like he needs an experienced investor now to move forward. He has put so much effort in and I hope he manages to pull it off.
MichaelRe: My wheelchair seating/cushions experienceI seen this docu too. I think his main problem was that he couldn’t get out the mind set that the chair in order to pay for itself as a business wasn’t just for him and his needs. he needed to grab a cross section of users to crash test for issues in order to develop it fully. fingers crossed he reaches his dream and ends up with the chair he needs.
Re: My wheelchair seating/cushions experienceMy experience of the private v NHS wheelchair cushion assessment…. next part of the story!
http://www.cripticthoughts.webspace.virginmedia.com/index.php
Re: My wheelchair seating/cushions experienceHi.
I am new here and I am not from the UK. I live in the USA. I have Becker’s MD. I have been dealing with pressure issues for a long while now. I tried all the foam and gel cushions with no success. Then I found ROHO cushions! They are a bit expensive, but I can sit on one all day long and I no longer suffer excruciating bottom pain. I would suggest a 4 inch cushion. You can adjust the air to your liking. These cushions will change your life. ROHO is a company owned by Sunrise Medical. Check it out…
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