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Rant, why do things that might help = expense?

It’s maybe just how I am feeling today BUT why does disability equipment have to be so expensive? While I am at it why do the [removed by moderator] drugs that may help cost so much?

Sorry folks but it’s been a while, I am taking it personally that I am being PIPed/my driving licence is under scrutiny and I will probably NOT fit the criteria for ocrelizumab!

M x

So true. I feel your pain. I won’t qualify for ocrelizumab either. I’m lucky in that I’ve moved from DLA relatively painlessly. I had to give up my driving licence and any pretence of independence ten years ago.

We’re also lucky in that we’ve got good occupational pensions, but this is not money for nothing. We’ve worked for many years and paid a hefty amount into the pension schemes.

This disability malarkey is expensive, very expensive.

Firstly there was the expense of moving to a bungalow, then there was the adaptations which have cost thousands.

Alterations at the front door and access ramp.

Alterations at the back door, raising the level of the conservatory floor to get rid of the step down, but we can’t afford the ramp just now, so I can only use the front door for now.

Alterations to the bedroom so that I can get a wheelchair all round the bed.

Wet room.

Wheelchairs, the first one was a mistake, too heavy. We’d no idea what we were doing and got no advice. The second one was better, and I got a £250 voucher from the NHS towards it. Then to try and make life a bit easier for my husband we bought a lightweight attendant push wheelchair, not so heavy for him to lift in and out of the car. Finally a powered chair, so that he doesn’t have to push me everywhere (I don’t have the strength to self propel) but that has meant the expense of buying and running a bigger car, and having a hoist fitted so that we can get the powered wheelchair in the boot.

The community OT provided a perching stool, and the physio a pair of crutches.

I pay in full for help from carers four mornings a week to take some of the pressure and burden of care off my husband.

None of this is going to make you feel any better, and I apologise for that. Your thread has given me the opportunity for a rant!

Sorry.

Rant away, I don’t mind.

I’m not surprised we can get so angry.

It seems as though every agency we deal with wants to take the maximum from us. We’ve worked hard for our pension and had our working lives cruelly cut short by this beast. I had a good job and bought my property based on my salary. How on earth am I meant to cope with the change of income? And how long will I have to wait for the adult social care to sort out my bathroom? They were remarkably quick at telling me how much I had to contribute.

I have a power chair that folds up and only weighs 25kg but even that’s the weight of your average 8-year-old boy. Of course I had to find over £2000 for that.

The local wheelchair suppliers told me of their minimum charge of £90 and I had to get the chair to them. Fortunately, my local garage repaired it for nothing. Another tip-a local bicycle or even motorcycle shop will be far more reasonable for ordinary service and maintenance.

I’d better stop as I’m getting a bit red.

I don’t mind either and may I say ‘ditto’ to two thirds of your rant! M x

We’re sick. Look the other way, so they can rob you easier.

The Internet is awesome for saving a few squids in the financial ocean.

MS has been an expensive disability. You’ll get totally confused when you consider all the things the experts tell you, you need.

I just got conned into having solar panels fitted, because they said I would save money. It’s been a nightmare!

There is no cure for MS. Look after your own health & wealth.

Sorry about the solar panels:(

Hi to all. I’m now in my w/chair all day every day, and can I find a comfortable cushion?? I’ve tried a number of them now - I’m on my 3rd, which cost £130 - some of them are 5-600 or more! Do they think we’re made of money? As (removed by moderator)MS said . . . why are things we NEED so expensive? Anyway, the point of my question is, has any of you that are a PWU (Permanent Wheelchair User)found a comfortable cushion? Or is there somewhere I can try some out to find one that IS comfortable? Your help/advice will be much appreciated. You all have a good day!

Maybe a memory foam pillow for a bed might work. I stuffed two in a pillow case & they mould to the required comfort. They have different densities too, depending on weight & can be found on Ebay quite cheaply. Stay comfy out there.

Hi Silvercat

Have a word with an OT who can refer you to your nearest wheelchair service centre and they will advise you and obtain you a cushion to meet your needs free of charge.

If you don’t already have an OT your GP can refer you or you can ring SS Adult care and refer yourself.

Hope this helps

Pam x

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Make sure anything you buy for your disability is VAT free, if it isn’t ask for VAT exemption as this can knock a huge amount off of the price.

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Thank you for all your comments . . . I will keep on looking!

Hiya Silvercat58

I’m sorry I’ve only just seen your post. I would definitely hope that you have a decent wheelchair service wherever it is that you live. Mine is in Kent and keeps moving around a bit, but they have at least been helpful in providing me with wheelchair cushions. Because I suffer with pressure sores. I have been lucky enough to be provided with good cushions.

I have 2 (I’ve had them for a few years now) Because no 1 cushion is comfortable ALL of the time, I alternate between a Flotech Gel cushion which is comfortable and secure, and I also have a Vicair cushion which is made up of lots and lots of pyramid shaped air bags - that is also comfy and is supposed to be the ‘gold star’ of pressure relief, but I don’t feel quite as stable on that one. Hope that helps a little bit as they are very expensive items. (Unless you have pressure sores)

Elaine

My occupational therapist sorted our house out with rails, bathroom stuff, rails outside. i could have gotten a wheelchair but i found one on ebay a really nice easy folding one and as I could afford the 50.00 it was to buy i bought it that was five years ago and it is still going strong.

However electric wheelchairs are not cheap. I just bought one which folds for 2,300. i only had the money as i had to sell my house to move into sheltered. you can get fitted for electric if your permanently in a chair. when my MIL had to go into sheltered because of her stroke i got her a rising chair, and a special adapted bed through the OT.

as to cushions i cant find one either which is comfortable on my bottom lol. i was wondering if i should use a rubber ring like when i fractured my coxic it was super comfy.

oh yes and dont forget VAT RELIEF even on building for disability, and if you have to use a wheelchair in doors you should get a discount on your COUNCIL TAX.

Hi all, just popped in to see how you’re all getting on. As far as my cushion search is going, my GP was going to refer me - that was about 2 months ago - still heard nothing!

And is that right that you can get discount on your council tax if in a chair indoors - I am . . . hmm - will look into that!

Stay safe people!

Stuart

It`s all about certain people making money.

If you dont ask you dont get and whoever saves paying out money to you.

Its all wrong but its that way because too many A*******S abuse the system for their own greed.