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.

I can see both sides of the argument. While I would be paying mysel if I had the funds, the danger of people doing this is that it creates a two-tier system.

Whenever something becomes so difficult to get through state services that people know they've got a snowball's chance in hell of getting it, people will try all and any means available to them to get it through their own efforts - borrowing from friends and family, selling something, etc. The state services then say that demand is such that it is unnecessary to provide it any longer and so it is removed altogether.

All well and good until you get those unfortunates who don't have the private means, or friends and family, or anything of value to sell.

But apparently they don't count.

It's the same reason why many disagree with private schooling. The argument is that if people stayed in the state system and just paid a little more tax (albeit a lot less than their private schooling fees) then state schools would be more than good enough for everyone.

Ultimately, it's a political viewpoint and therefore neither right nor wrong but just an opinion.

I have a 7yr old disabled dd who is paralysed from the chest down, who has been in a wheelchair from the age of 2, I had to argue with the OT's that she needed a chair as she was getting frustrated being in a chair that she couldn't move as it was like a buggy.

Now she is older and more aware of her surroundings, she loves going out places like the beach, unfortunately this is not really wheelchair/buggy friendly and her chair is a nightmare.

The only option is for her to have a new wheelchair which is an all terrain one, it is not available on the NHS but our OT's do have them for hire if you wish.

We have decided that we will be buying one or her so she would not only be able to access the beach but she can go into the sea with it, it will cost us the best part of £3000 but if it enriches her life then so be it, it has to be said that it is not a necessity for some people but it will enable us to access various places as a family with our other children so we will all benefit and is necessary for us.

I am by no means wealthy.......far from it, yet I would do anything to get the money to get this for her, I have had to purchase a specialist car seat for her to support her spine which cost me £1056 but it was needed.

I also enquired about private physio when the NHS ones said that my dd didn't require it anymore, they then decided that actually my daughter did need physio after all.

Is there anyway that your sister could get a grant at all, is she under 18 as there are a ew charities which could maybe help.

YANBU.
My Mum has a condition that will probably be with her all of her life, but when waiting for an initial referral some years ago, the NHS really messed her about.
In no way could my Mum have afforded to be seen privately.
My Grandparents are not particularly wealthy, but at the time they had a bit of extra money, and gladly used it so that their daughter could be seen quickly.

Sadly for many people (myself included) the NHS is the only option even in cases where nothing seems to be getting done.
I have had moderate to severe back and neck problems, but the NHS physios have been so utterly shit slow that not much has been done, and I could never afford to be seen privately.
If I could afford to be seen privately I'd jump at the chance to be honest!

YANBU.

When DS1 needed surgery on his foot we paid to go private, the waiting list for the surgery on Medicare was insane. We had the money, my kid needed it, it was a no brainer.

I understand wanting the NHS to pay for it and maybe they should, but the world isn't as it should be, you have to deal with it as it is.

YANBU. I do not understand your mother or your friends at all.

Nor do I understand why the NHS provides speech therapy that costs the same whether it happens at the right time or the wrong time but can only be effective if it is administered at the right time. There is a massive disconnect, a huge issue of the left hand not knowing what the right hand is doing, somewhere along the line.

Have you looked at used? I assume you have.

I think your mother is awful and you can tell her I said that. What a pointlessly selfish stance to make when your sister is suffering by being housebound etc. Yanbu at all, I just don't get people like this.

If your mother was really serious about getting the NHS to work and have enough to go around would she consider sending a fat cheque to be used as needed?

YANBU. I hate this sense of entitlement, that the state will provide everything. We do not live under socialism. And the NHS has only limited funds.

I don't see it as a sense of entitlement. If people felt entitled they would go out and get the care they needed. I see a lot of meanness and selfishness on the part of the mother, and ignorance and even neglect in the case of the friends who stand by while their child goes untreated.

Rather than entitlement, I think there might also be stubbornness and even anger that they paid into a service that ended up not providing what they assumed it would. But the thing to do would surely be to get what their LOs need themselves? I mean, if they cared...

Sense of entitlement?
For expecting an appropriate wheelchair.
Is that a joke?

My DS was dx with a conditon. It is not life threatening but it is problematic.
Although he was dx on the NHS treatment is not available on the NHS.

I got quite a few people saying 'if it was me I would take out a loan, sell my house etc etc to get the right treament for my child'

Any idea how crap that makes people feel?

To have to make the choice between a treatment programme and security?
We can 'just' take out a loan and if we sold our house where would we live.

People say a lot of things when they are not in the position.

If an individual is a wheelchair user the state should provide a suitable chair for their needs.

But they dont. My friend had to wait four years for a power chair for her DD.

We are not talking about sorting out a crooked smile or sorting out a few stretch marks. This is a wheelchair and the woman who needs it is an adult who should NOT have to rely on her MOTHER to provide it for her.

Talk about infantalizing disabled people. Get their parents to provide, whatever their age.

No, sorry, that's not what I meant at all. Firstly, my criticism was directed at the mother, not the OP or her DSis. The NHS can't afford to provide everything everyone needs, and in this case the mother can afford to buy the wheelchair, so she should. I would feel differently if the family genuinely could not afford to buy the wheelchair.

And yes, I do know what it is like to be refused treatment myself. We have spent 30k on IVF and had no help. But then I understand that the NHS cannot help everyone and I understand that. They don't have a bottomless pit of money.

yabu
this is the trouble with the wheelchair service, they only supply bog standard chairs, they are not always suitable.
so yes they could buy the chair, but surely the service should be better.

YANBU. I am shocked that your mother could watch her DD struggle (stuck indoors every day while DH works FFS, that is no way to live if it can possibly be avoided) if she is as wealthy as you suggest. I'm all for principles, but when someone you love is suffering, then fuck principles!

I wouldn't hesitate to go private for something like that if I could afford it. It sucks that many (like myself) cannot even dream of paying, but surely if you do pay you are shortening a waiting list for others?

This is an ADULT (apologies if I have this wrong).
She is not a child and should not be dependent on her parents to provide essential equipment.

Stop treating her like a child because she is disabled.

Its disgusting.

OhDoAdmitMrsDeVere well said, the parent is no longer responsible for the adult.
also it isn't just about buying a WC, if you buy it yourself, you then have to pay for all the servicing.
not cheap

in this case the mother can afford to buy the wheelchair, so she should

No, she shouldn't. She has already paid in tax, and the dsis will have paid tax too, even if it's just VAT at least.

Wheelchairs are essential, and I'm sorry I you had to deal with infertility and I realise how damaging it can be, but you cannot compare being refused IVF to being refused a wheelchair.

The NHS is wonderful, the principle, the delivery (usually), I adore it and I get cross when its slated like I would when a member of my family is criticised.

But a little pragmatism goes a long way.

MrsDeV you're right about the adult child, but in this case the mother has involved herself by writing, lobbying etc.

I have fairly socialist principles, but when my dd needed a better wheelchair than the Red Cross could provide (the NHS having refused point blank), I went out and bought her one. Because I could see how her health would get damaged during the months/years it took us to fight for our rights.

In the case of an adult child, I would have to balance this against a general assessment of the person's own abilities to organise her own needs: her ability to earn money/push for better support from the NHS/contact other funding organisations. But if she was unable to do this/all else failed, then I would step in if I could. Again balancing it against a general assessment of how spending that money would affect myself and other family members.

It's not about treating a disabled adult as a child: in a real crisis I would step in for any family member if I could do so without injuring myself or others; it's about families sticking together.

Yes, the state should provide- but if it doesn't, it doesn't. It's a question of how far you let an individual suffer when you have it in your power to do something. If it is not in your power, then that is a different matter.

When I was ill and poor at the time dd was born, my mother stepped in and helped me out financially. If she is left a widow and in need of money, I will step in and help her out if she needs it. That's not infantilising, just families.

Having said that, yes I would be wondering why the OPs dsis is not doing her own lobbying.

Flossie, I didn't mention my IVF for sympathy, but just to illustrate that the NHS cannot pay for everything, and if something is not routinely given out like an electric wheelchair and you can afford to pay for it yourself then you jolly well should.

How any mother can see her child suffer like that is beyond me.

Yanbu. I do not understand why anyone who can afford to do so would play Russian roulette with their health on principle.

I find it absolutely fucking absurd that acquaintances will happily drop a million quid on a London home yet balk at a few hundred quid on the health.

Absolutely fucking bonkers.

There is a real difference between helping someone who is ill and someone who is disabled

I want my son to have as much independance as possible as he gets older. He will only acheive this within a society that treats adults with disabilities as people in their own right. Not an appendage to a saint of a mother.

We were making some steps forward in getting rid of the benign oppression of people with disabilities (leave aside the other sort for now) with DLA and direct payments, supported but independant housing, PAs and the Equalilites Act.

This progress is being swept away and we are falling for the line 'we cant afford it'.

We cant afford NOT to support people with disablities to live their lives as adults.

Back to relying on elderly parents, long stay hospitals, institutions it is then?

We are talking about a wheelchair. Not some unproven, experimental treatment.

I forgot to mention. My friend who waited four years for a wheelchair for her DD with CP, she didnt get it from wheelchair services. She was on a waiting list for a charitable donation. Once she got it she was granted an audience with her benefactor so she could be grateful.
Of course she was grateful but how would you feel about waiting for years on the off chance someone rich and kind would allow your child to be mobile?

YANBU.... Wealthy parents that would rather their DCs struggled than put their hand in their pocket and pay for extra equipment or care are not standing on any principles except the one of being 'tight as a duck's arse'

YANBU your Mother needs to give up!

the trouble is , this is what this government expects, they expect family to pay or the person to go begging to charity.
an adult should not have to have a parent paying for something that should be supplied by the NHS