to just not understand this attitude?

[Livinginaparalleluniverse]

Unfortunately my sister is in a wheelchair, the NHS provided wheelchair is functional, but too heavy for her to manovere by herself, and therefore she requires someone to go with her if she wants to go out anywhere.

The wheelchair she can use by herself is £1,000. NHS say they won't provide as they've done their bit and provided a wheelchair. My wealthy mother who for her £1k is a drop in the ocean, has spent 18mths battling the NHS to get this chair. My sister has asked my mum if any chance she could provide the chair, being very dependent is affecting my sister psychologically. My mum's attitude is the NHS should be providing the chair and therefore she refuses to purchase chair on principle not monetary.

Yes in an ideal world the NHS would have the funds to provide the best piece of equipment available, but we don't and that's the way it is.

My friend's son has a severe speech impediment and is waiting for speech and language therapy, but in their area due to staff shortage there is significant delay beyond the recommended 8 weeks. Again very wealthy, funds not the issue.

When I recommended going private, they were horrifed at having to, as why should they spend their money on something that the state should (and incidentally do provide just not in timely fashion)?

I just don't understand this attitude at all.

If you agree with them, please explain.

If you agree with me, thank you.

Bollocks.

The ignorance of the real issues on this thread is breath taking.

Lots of reverie about 'I would do anything for my child' but little thought to the actual implications of adults with disabilities being dependent on their parents.

Those who can 'afford' it start paying for essentials - do you really think this will free up money for those who cant? My arse would it.
The sister is entitled to a wheelchair, she will be on the waiting list.
Remove her from the list and the budget will be adjusted accordingly.
That means it will get smaller.

Your monther has the principles, your sister has the problem. If the problem were transferred to your mother then I am sure principles would be dropped instantly.

"they expect family to pay "

In most civilised societies in the world, families look after each other first and call on the state last. Asian families are famous for supporting each other's business ventures, education costs, housing and so on. Denying your family help if you're able to give it is horribly selfish.

What Mrs D V said.

NAd don;t think a wheelchair is JUST money spent: my friend's parents fought and fought for years to get him a specialist chair and other equipment. Even a FT PA so he could attend university. A VOCA as he has very little speech.

He now employs 11 people and is on his way up big time. When it comes to disability, investment maximises savings long term- especially early investment in childhood (eg for Speech Therapy).

I am well aware ds1's specialist school costs £££££ but I feel fairly certain it will be his best chance to have a career and avoid prison- the behavioural input is astounding.

Even for those kids who wont work- like my ds3- decent inout could make differences in so many subtle ways. A VOCA buys a voice, SLT buys supported housing instead of more costly residential....

Outside the financial aspect if paying private is affordable then yes we did it when we could. but we should not have HAD to.

CogitoErgoSometimes we are talking about a specialized piece of equipment here, not an after school club

I agree with you OP. I also don't believe state should pay just because I pay my taxes.

Way I see it is what state provides is to assist those that can't pay for it themselves and is basic in order for the money to go around. In any similar position to your sister or friend I would be paying. I understand that I haven't taken out as much as I have put in (as some like to put it) but that is part of looking after the less fortunate in society.

Could someone like the local Rotary club help? I'm sure your mother would love her daughter to be helped by charity because she is to mean to do so.

Well said 2shoes, this is a specialised piece of equipment which enables a disabled adult in this case to be independent, it's not a case of "the family should support" although clearly in this case they can and should, no way would I see a child of mine suffering if I had the cash to stop that.
This does not make the crappy service for wheelchair users right though. What is the point of a wheelchair if it does not meet your needs.

what mrsdevere said. At what age are elderly parents expected to stop? Any other thread would have people saying 'the parents have done their bit blah de blah' but a disabled person apparently remains an infant and isnt entitled t vital NHS equipment?
DD's wheelchairs. Her ordinary MANUAL wheelchairs cost £8000. Thats half our salary. A powerchair would be 20K. Luckily as a child she gets an NHS manual (she isnt alowed a powerchair as the NHS does not provide for 'severe' category)

What next? Your 33 yo needs cardiac surgery so you should pay? We have an NHS, we have all paid in. Its meant to be like insurance. A wheelchair is a fundamental and vital peice of equipment. Perhaps you lot would be niggardly about prosthetic legs next? Should the parents of wounded soldiers be buying those perhaps?

It's not always ignorance MrsDeVere; sometimes it is simply an estimate of the damage likely to be done/the opportunitites missed for one particular individual if the waiting becomes very long.

I think it is a little uncalled for to accuse everybody who doesn't agree with you of massive ignorance. Some of us do actually have those daughters in wheelchairs.

I am dealing with that situation now and I expect I will still be dealing with it in 3 years time when my daughter is an adult. I cannot promise I will not make payments that are against my political principles- if I see that the alternative is dd sinking further into depression/missing out on a job opportunity/not getting qualifications/ not getting the chance to be as independent of me as possible.

I may be wrong. But I am not ignorant. I wish I were.

And fwiw if my MIL's money had not been enough to pay for her specialised nursing home I would have stepped in for her too. Yes, of course the state ought to pay, but an elderly person can deteriorate very quickly and MIL would almost certainly have done so if the correct equipment for lifting her etc had been delayed.

So am I infantilising MIL? I give to the Red Cross too. Does that mean I am infantilising the people who get help from the Red Cross? I helped my friend who was disabled. Is it only if you know the person that it amounts to infantilising? Or is it only if you are related to them?

Where is the line drawn Cory. Back when the kids were little we ended up homeless. DH's parents are pretty well off. Should they have paid for a house for us rather than the state sticking us in expensive temporary acomodation? Was it their responsibility?
Once we insist elderly parents are still responsible for adult children we can wave goodbye to the NHS and welfare state. Maybe some would like that?

And when I say "I will be dealing with the situation" when dd is grown up, of course I don't mean I will be making decisions for her or not expecting her to take responsibility.

But in a situation where she has done everything she can to access help and help is not forthcoming, and I can see that help would make a difference to her, and I had it in my power to offer that help- well, it would be very hard.

I know what you mean KalSkirata. But my MIL would probably have died far more quickly without the specialised care that NHS nursing homes do not provide; should we have let her die of her money had not been enough?

As for dd, because her consultant believes that owning a wheelchair is a bad thing for her condition ("it will make her think of herself as disabled"), the choice was between paying ourselves or never letting her leave the house. She has now had 8 years of education that she would not otherwise have had. Yes, I know the consultant is wrong, but 8 years of education will make a big difference to dd's future.

I am not happy with it, but I couldn't just let dd stay in bed until the consultant changed his mind.

When the family steps in in supports the Social Security System rather than undermining it, surely.

The problem is when the state starts abdigating its responsibility because there is family back up.

My parents paid for my sister's wheelchair - but they shouldn't have had to. When I see people in lousy, impossible to manoeuvre wheelchairs I feel angry that they have a more difficult life because they don't have access to extra funds.

But when my DD3 needed speech therapy, and the waiting lists were too long, DH and I decided not to go down the private route. It wasn't a point of principle (although I'm completely opposed to private healthcare), but a lack of trust - I suspected that most private speech therapists would be less committed than their NHS counterparts.

I don't really know what I'm trying to say - I guess I'm saying that these are difficult issues, and that you make decisions that seem right at the time.

In the main, I suppose I do have the same principles as you, Kal, and you, MrsDeVere. I am not comfortable about paying for things I shouldn't pay for. I have folded, to some extent, in the face of reality. I suppose that's why I resent hearing it called ignorance. It's something bad, but it's not ignorance.

trying to get a decent wheekchair out of WCs is very hard for an adult .I was discharged with a red cross style wheelchaor while waiting for an assemet

only now have i been told my nhs wheelchair is now available almost a year on and had a fight to get a decent one of them

cory im similiar i have brought things for ds3 just becuase i can not be fussed with the wait or the fight

Principles eh!

I agree that we all pay in to the NHS. so are entitled to use it .. etc. BUT if I or anyone close to me needed some treatment/equipment urgently then I would pay £ for it. Health versus principles?

A close friend had lump in her breast- and rather than wait three weeks for NHS referral, she paid for a private consultation - (probably same fella) and avoided two extra weeks of waiting and worrying.

So, if I were your mother with lots of cash I would pay for the wheel chair.

YANBU
Perhaps you could suggest to your mother that as she is in a position to help your sister she should do just that, and then start a campaign to change policy for others in the same position. That way your sister will be helped now, others will be helped in the future, your mum can still stand up for her principles, and in the future wen your sisters chair needs replacing it will be done for free?

"we are talking about a specialized piece of equipment here, not an after school club"

We're talking about an enhanced version of equipment already available. Everyone knows that NHS provides basic one-size-fits-all stuff. As someone that wears glasses the 'NHS specs' were never anything to write home about - heavy, ugly etc. If you want fancier equipment, you pay.

oh fuck of Cogito

nhs equiment means you can not move around your stuck sittiing in one place .There is a world of differnace

Nhs chair means i can not look after my dc I can not go to the shops I can not make a drink

This is not fancy equiment were taling something that allows people to move and do thingws

one size fit all as well as the above then cuases pressure sores which then mean hospital admissions , specaised bedding , carers needing to go in ,joint damage , pain that makes you want to sob with agony

So in long term costs more

Cory I am sorry if you think I was calling you ignorant.
I was referring to the general tone of the thread which I think you may agree is one that shows little understanding of the situation.

Cogito I work in an area with a very high asian population. We also have a much higher than average number of children and adults with disabilities.
One of the reasons is because people move into the area to make use of the services provided because they have no access to family support.

So I am afraid your sterotype of supportive Asian families is a little more complex than you think.

TBH I am also a bit about a decent wheelchair that only cost 1k.
You get feck all for 1k.