To say wheelchairs and everything to do with them is shit

[GreenEggsHamandChips]

Im out and about with DS' new wheelchair.

For the first time Its beautifully supportive. Decent headrest...

And shockingly heavy and I cant work out how i keep him dry in it.

The poncho with used on previous chairs (which i butchered to get over the headrest) flaps around all over the place getting in my way and letting in rain

Why is nothing to do with wheelchairs well designed?

Oh Green. No answer but didn’t want to read and run.

Maybe they are poorly designed because the designers are rarely wheelchair users?

How old is your DS? I don’t have the link on me but know of a good company that makes things like coats that fasten at the back for easy use in wheelchairs. Can post a link this evening if you are interested? (It’s something like Willow Bugs I think???)

Hes 11. So getting heavier.

Hes the kind of user who will be actively in and out of it until hes not and then he wont be moving much at all and the support is really needed. Finding stuff that works is hard

Yes please. I need other solutions.

And i real rant. New wheelchair, rain and a train journey was not a good start to the day.

Im bemoaning the lack of independence. Realising i may have to book in with special assistance simply because i dont have enough hands. We cant do as much as we used to because im knackered pushing it.

Im thoroughly fed up

Is it one that could take a powerpack, to give you a bit of help with the grunt aspect of the pushing? (I don't know if they all can but did some work for a mobility scooter company and they sold them).

Yanbu Op. My nearly 11 year old wears a waterproof coat and trousers in his wheelchair but he has a different chair to your son and also he is an ambulatory wheelchair user which makes dressing easier. I feel your pain about getting heavier and harder to push though. Ds's chair is like a wonky shopping trolley and he is skinny so the handles are really close together.

Would the Cosy Toes or anything on this list be of any use?
www.mobilitysmart.cc/wheelchair-accessories-c-24/wheelchair-clothing.html

The Cosy has a full length zip so it is not too difficult to open and walk out of.

Rumour has it yes i could get a push assist. If i pay for it (about £1000) and get wheelchair services permission. But i cant have that and the hillbrakes, so its a compromise between possibly easier pushing and being able to go downhill and heavier chair which makes it a more difficult choice.

If everything is going well he's ambulatory so maybe i should go down the waterproof trousers route. How do ypu keep the seeat of the chair dry?

Im not sure on the cosy toes... he has a moulded seat cushion and back rest im worried about putting layers down his back in case that takes away from the back support...

Definitely look into a power pack, something like this one shop.springchicken.co.uk/collections/wheelchairs/products/wheelchair-powerpack-duo (I know someone who uses it is the only reason I'm putting this link) there are others around, it is quite small. Some make the chair more bulky.

Don't forget you pay the non vat price (apologies if that sounds patronising, It's easy to forget, I do).

Clothing is always difficult to sort out. The poncho is all that's really available as far as I'm aware for wheelchairs.

I know booking assistance is a pain, but if a train gets cancelled it does mean they have warning to arrange transport that's suitable - I travelled without assistance and found myself stuck on a platform when the train was cancelled until another came. I've not travelled for a long time but I found it could be hit and miss if it turned up as well.

X-post. What do you mean you can't have power pack and hill brakes? Is that the service saying that?

Around here both are essential and wheelchairs can and do have both fitted (unless people are extremely fit and capable - we have massive hills here so 99% of people have both fitted).

My dd(9) has a cover from fledglings.org.uk/ she isn't in a wheelchair full time, but needs it to get to and from school and when she tires. It's waterproof, goes over her feet with thick, fleece lining and velcro behind her back. If it's really bad, like this morning, I put a rain poncho on as well. I think they do several different styles too, all in one covers as well.

Yeah thats what w/c services said. I might double check cos that was for the last chair but this is the similar frame different adaptations. I had to pay for the hill brakes on this one :-(

I have purchased overtrousers as they are so cheap they are worth a try regardless

Wheelchairs are a pain. Ours is heavy and I struggle to get it in and out of the car!

Have a look at Bundlebean wheelchair blankets. We have one. It's waterproof on one side and fleecey in the other so it keeps you warm and dry. I love ours!

Yanbu, i ended up in a wheelchair temporarily a couple of years ago and it was a real eye opener as to how shitty it is for wheelchair users to achieve anything out in the world!

The upside is you might develop fabulously strong muscles over the coming months and be able to moonlight as a sportswear model? I hear modelling pays v well.

Sorry it's so shit. It does sounds exhausting and demoralising to manage. I hope it gets easier with time.

That's a pain. I know it took a long time and a lot of complaints for services here to accept that both could be necessary. Do complain about it. It'll change when enough people do so.

Vicsleighbob I got a little ramp for getting DD’s manual wheelchair in and out of the car, it really saved my back.

I use this on my scooter, would it be any good for you?

Found the link: my wheelchair using friends and parents of pupils recommend them
www.willowbug.co.uk/

Found the link: my wheelchair using friends and parents of pupils recommend them
www.willowbug.co.uk/

@Vicsleighbob ive heard of bundlebeen but not seen them in real life. How warm are they? And are they geninely waterproof? Do so im right in thinking they just elastic round the bottom. How do they fasten at the top?

@Floomph Already on it. Lifting DS's wheelchairs are the driving force behind my gym routine!!

@Booboostwo the only ramps ive seen have been quite long and heavy what do you have if you dont mind my asking

And like everything else to do with supporting disabled people what is out there to purchase is so blooming expensive!

Sirzy Yeah is it and still a bit crap. Poor materials and either pink or boring black

@TheHorseYouRodeInOn I think id probably have the same problem of what happens to the headrest...

sizy that's because we get soooo much extra money off the government!

So far in the last few weeks I've been told to hand over my PIP care to pay for a carer, to hand it over to pay my rent, use it to pay for private physio, use it to pay for private podiatry and to use it to attend hospital appointments using hospital transport which is no longer free for those in reciept of disability benefits as that's what the money is for and finally for the equipment I need to monitor my diabetes as I cannot manage the funded equipment as a result of my other disabilities and the equipment I'm deemed to "choose" to use is no longer funded.

When I pointed out it wouldn't stretch that far I got told, without exception, that's what the money is for not luxuries. No chance of that!!!!

Sorry for the slight derail op. It's something that really annoys me!

That's not counting things like incontience lads which I must pay for (and cost a fortune) as the NHS ones are so crap.