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.

Principals are fine but the world mostly doesn't give a fuck.

I wasn't going to keep my money in my bank account and watch my kid limp in order to claim his right to Medicare funding.

I get what is being said about forcing the NHS service to provide so everyone gets a better deal, but when it comes down to it I don't care about 'everyone' the same way I care about my kids. Selfish but not ignorant, I understand just fine.

NHS stuff is very basic. I had a child in my class who was in a wheelchair that was far too small, she was very disabled and it was actually causing her lots of pain. I kept her out of it most of the time, but weekends/ holidays etc she was stuck in it.

I rang the wheelchair service once a week for a year. They came in twice and did fucking stupid things like knee blocks (a decent wheelchair shouldn't need knee blocks!)

Parents wouldn't pay. Beautiful house, kids in designer clothes. I didn't and don't understand.

How about this.
Everyone on this thread that is utterly appalled at this mother's lack of care for her disabled daughter chips in a tenner or more?

That chair would be bought in a trice and the problem would be solved.

Apart from the fact it wouldnt.

Because a 1k chair is a pretty basic item. The likehood is that the DD will need adaptations to the chair and her needs would change fairly frequently.

Because that is what happens in the real world.

mrsdevere there are at least two campaigns in this town currently to get kids equipment that I think is pretty basic (walkers, therapy, adapted chairs.)

The families are fund raising, doing pub quizzes etc to raise the money they need.

So basically what you're suggesting there, everyone chips in. No, that doesn't cover on-going costs, nor does it fix the problem, but it's a start.

I did have one parent who managed to get the Nash to provide her child with a state of the art, fabulous wheelchair - but it took 2 years, and she was a major fighter (we clashed constantly, but I really admired her tenacity!)

We did spend on ds1's care - for years. And we spent a lot on things that he should have been receiving on the NHS. Then we ran out of money.

It sucks, I can understand why people don't, and I wish we had fought more for things he was entitled to in the early days, as had we I wouldn't have to be working until midnight every night trying to pay off the debts we ran up in those time of self funding.

Ds1 has just received a rather life changing piece of equipment (that links to a blog for anyone who doesn't want to click) thanks to a mystery mumsnetter. We are extraordinarily grateful (blog hasn't been updated for a few weeks as I have been ill- but it now even has some french words on it ). However I feel quite strongly that that sort of equipment should be funded by local authorities when it has been shown that it will benefit the child/adult. It will save THEM money in the long term. I am slowly looking at ways I can try and campaign for this, as very very few people will be as lucky as ds1 and have an anonymous benefactor.

There is also the fact that if everyone who can self fund does and doesn't even apply via their local authority then there is no need for this equipment demonstrated, and so nothing changes, leaving those who cannot afford to buy their own stuffed. We had applied to out LA for the talker funding and I have made it clear to them that this was a need for ds1. Luckily he is doing so well with it that he is turning into a bit of a poster boy - but one of things I will do with that is use this as a way of emphasising the need for LA's to fund.

Shes NOT right on principle. IF you can afford it easily, why would you take from the limited communal pot, even if they were handing it to you?
Your tax isn't a bank for you to take what you need, its a safety net to help those in NEED, not in WANT.

If I was wealthy I'd buy 10 wheelchairs and hand them out, not be squabbling about who should, in principle, be paying for them.

Even if they end up paying they should still apply - so that the need is demonstrated when setting budgets in following years.

I do think it's appalling that the more complex your need (i.e. the greater your actual need) the less likely you are to be helped by the NHS. We found exactly the same with our son. If he'd had a speech problem that would be fixed in 6 weeks he would have been given SALT, because his speech and communication difficulties were much more complicated he wasn't allowed any (so we paid, at £50 quid an hour, and along with paying for everything else that wasn't provided, ran out of cash).

This is fairly typical of the NHS. Wheelchair services are particularly bad, I know children who have outgrown their specialist wheelchairs then waisted eight months for another, in the meantime unable to go out as they didn't have a chair that could support them. Appalling.

I'm not disabled & my parents still help me everynow and then - because they love me and they want to. I'm not talking massive handouts, as I am financially self-sufficient - but when my car died - they put a small amount towards a replacement & they help look after the DCs every now and then too. I help them too. I help my mum with all her computer issues & I've done typing for my Dad to help with his business. Family should be about helping each other when you can.
The NHS is not a bottomless pit - we don't pay enough tax & NI for it to be that. In countries where they have a more comprehensive health service, they pay more tax. The NHS is great for critical care & getting you by.

It could be argued that in this instance, the NHS is not actually supporting Livinginaparralleluniverse's sister to get by, as she can't manouvre her wheelchair properly. I agree that no stone should be left unturned to try and get a better / lighter more suitable wheelchair from the NHS - but I would also argue that family should help out too. If a parent can help support their daughter with something as life altering as a wheelchair that enables her to get out & about - I can't for the life of me understand why they wouldn't.

mrsdevere

I agree 1k is a cheap chair for a decent lightweight manual chair for an adult 3k is more normal

I admit on principle it should be funded but sadly it is not which in day and age something as basic need asa wheelchair should be fully met

post

yes if they cna be nice but this a essential equipment and as you said your not disabled so will struggle to understand .

This would infact come under critical pressure sores leads to complications that kill people

How would you feel if your state schools sent you home a note tonight asking you to chip in to pay the teacher's wages because you could afford it.

Or next time you go to the doctor you were told that because you could afford it you could pay the cost of the consultation?

These are basic items of equipment, people are not asking for trips to go swimming with dolphins . I'm surprised so many people think it's perfectly acceptable for the NHS to provide equipment that is not fit for purpose (or none at all).

Sorry, human - I thought this was a wheelchair to replace one that was too heavy and therefore allow the OPs ister to get out & about more. I didn't realise it was about pressure sores, which is something different.

I'm not disabled, but I do have an autistic spectrum child - so not totally in the dark with those requiring additional support.

Saintlyjimjams, I would feel disappointed by the things you suggest - but can't help feeling we'll end up back there anyway. Unless we all agree to pay alot more tax, the NHS cannot keep on supporting an ageing population in a time of ever more sophisticated & expensive health treatments.

post

that is the thing if it is to heavy and the generic defaut chair ,It will be ill fitting and imagine not being able to go out and out about at all.

This can lead to depression and lots of othe rissues .The default nhs chair i was offered .I would struggle to even move and make a cup of tea .or go to he bathroom .

or go out and socialise

well the NHS wastes huge amounts of money, but that's a whole other thread.

I do not think it acceptable that if you have one condition you have your needs met, another and you're left high a dry. As I already said - the MORE disabled you are, the greater your needs, the more vulnerable you are, the less likely it is that the NHS will meet your basic needs. I think that's appalling, and if the NHS can no longer afford to support people with the most complex needs then we should all be paying our bit, not leaving it to the most vulnerable to get on with it.

I understand that human, which is why I said no stone should be left unturned to try and get a better one through the NHS - but I also think that a wealthy mum could help too. I think there are two options here. I am arguing that family should help out - that is what families should do wherever they can.

infact for those that say Nhs should only meet basic needs .

Well imagine being told you can never leave your house again becuase we dont care what you can do out he house

Becuase that is what happens

Without friends I would not have been able to leave my house for the last 11 months

I'm an OT so work with disabled people every day, many of whom have complex needs and require specialist equipment.

So everyday I am apologising to people that no, the NHS / social services (who are responsible for home adaptations btw, NOT the NHS) no longer provide this or that particular piece of equipment and if they want to persue it then they need to self fund or look at charitable funding.

We can only provide outdoor walking aids to people who go out at least four times a week. Once a week to the supermarket isn't enough.

Social services (yup them again, NOT the NHS) used to provide a wide range of small aids that made the world of difference to many people - specialised cutlery, dressing aids etc. They stopped last year. So my dept (NHS) has taken some money out of it's budget as we know that in the deprived area we are based in, many people would struggle to pay even a tenner for something small.

I don't believe that this situation has arisen because more people are actually bypassing NHS / SS and going private, it's because there is NO MONEY so they are making tough and a lot of the time frankly crap choices.

There is a huge waiting list to see an OT / PT / SALT in my area. Because they won't pay for more staff. My managers attitude to this is to make us carry caseloads that are far far larger than they should be meaning that everyone works through lunch, comes in early and leaves late. What we should actually do, is work our hours, make the waiting list even longer, and then maybe, just maybe, someone will recognise a need for more staff whereas right now the real desperate nature of the situation is masked.

So yes it is shit that people can't get what they need to live independently, and there have been several precedents set where disabled people have taken the local authority to court to get what they need.

But, and this is where I disagree with you MrsDeVere, the lobbying and fighting can continue alongside someone who is perfectly capable of paying for an essential piece of equipment for their daughter to live independently. Because otherwise she is just suffering for the sake of someone elses principles.

yes if they can post and truth i think most famlies loose principles when it comes to the crunch .

But not all famlies can help and infact it should be met, as a basic need from nhs

CogitoErgoSometimes Tue 06-Mar-12 10:13:44
"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.

you show a severe lack of understanding about seating systems,no way can they be compare to glasses.
it is not to do with fancier equipment, it is to do with suitable equipment.

red

But it is a sad state of things when it comes to someones parents having to pay for an adult child basic needs

and yes I do think if they can really genuinly afford to help it is sad they rather watch someone struggle than refuse on .princples.

ok this tends to be the standard wheelchair for adults with no posture needs

www.epc-wheelchairs.co.uk/products_detail.php?prodID=111

compare to something that truley allows for comefort and indpendence

www.kuschall-uk.co.uk/products/foldable-wheelchairs/kuschall-ultra-light.aspx

how's the job situation for newly qualified ot's redspotted? I work a lot with newly qualified SALTs, none of whom can get jobs at the initial band they need (because no jobs are advertised).

There's an example of the NHS wasting money - pay to train loads of SALTs, then make it impossible for them to do their first practical year (which they need to do to be able to work as a SALT) by not providing any band 5 jobs.

This is despite there being a huge need for more SALTs

in fact of anyone is reading this thread needing SALT for their child, rather than paying £50 an hour look for a newly qualified SALT who hasn't got a job and pay them. They won't be able to work officially as a SALT as they won't have done their competencies year (which is basically a tick list), but they'll be good and keen. If you need one PM me, and I may be able to find you one through my contacts.

saintly I think it's pretty dire, and even worse for physios. There are people who qualified as a physio several years ago who are still working as support workers. The problem always comes down from lack of funding though, which ultimately is the responsibilty of the DOH and the government. The NHS and local authorities are having to make very very tough choices because of a lack of cash. Yes money for the NHS has been ringfenced, but the amount of people requiring services plus the number of people with complex needs keeps going up and up.

I know the NHS has many many issues and the service is far from perfect, but I am still very thankful that I live in a society that has access to healthcare free at point of access to all. I've had my fair share of issues as a patient and a mum of a patient where I've had to stamp my feet and shout to get what we needed, and have also (because I'm lucky enough to be able to) have accessed private services when I;ve felt the need and would again.

And to whoever compared this situation to getting NHS glasses, how ridiculous! NHS glasses do exactly what they are supposed to do ie correct your vision even if they aren't as pretty as the designer ones (although these days they are pretty acceptable). Wearing NHS glasses is hardly the same as being stuck in the house because you cannot use your wheelchair independently.

OP how is this decision being challenged? If your sisters independence is as compromised as it sounds I'm sure there are grounds for appeal to get more suitable equipment. Has she been assessed or refused assessment for an outdoor electric wheelchair? If she is young (unfortunately there is definitely discrimination on grounds of age) and her life is being curtailed because of this, then I am certain that the law would be on her side to get her what she needs.

I do know of a case locally where the NHS's failure to provide an appropriate wheelchair put a child at risk, because she needed the correct wheelchair to grow correctly (and how much would treatment have cost to correct this avoidable problem - no matter the emotional impact there's a straight financial one).

That sounds very like SALT redspotted. All the SALT assistants I know are actually qualified SALTs.

Agree.

It seems that the NHS can not suppy much beyond the basics so if you can supplement it seems sensible to do so.