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 am my mother's accountant, I know her exact financial position, also as her daughter I have had many discussions with her with regards to my sister's health.

Yes my sister is a grown woman, she has been left brain damaged and paralysed after contracting a virus.

My mother doesn't believe she should be paying for any equipment for her, as she shouldn't have to support her grown up daughter, as she's finished raising.

Neither my sister nor my mother had it in their life plan that disability would affect her, but that's the curve ball she's had.

I don't know the ins and outs of what my sister needs, but my sister's partner has done lots of sourcing of a wheelchair for her.

I do know my sister has described it as 'not wanting a rolls royce of a wheelchair, but not being able to cope with a robin reliant, so a clapped out ford capri would be acceptable.'

She needs the wheelchair to have support on the side and be able to strap her in, as otherwise she falls over to the side, and to be able to go by herself she needs it to be motorised.

A mobility scooter is not good enough as they don't offer the support to the side.

She/her partner have applied to charities and rotary etc with support of vicar and OT but as of yet due to current climate has been unsuccessful with some pending.

The 8 week window was not in relation to my sister, it was in relation to my friend's dc's SALT appointment.

They have been advised that their target is to see children in 8 weeks, unfortunately due to staff shortage, the appointment will be longer than 8 weeks, and at this time they have no idea how much longer.

I merely suggested how about looking into private initial appointment and they were of the attitude that they would wait.

This is the same principle as my mother, but not the same situation.

Does she get support from SS? I ask because they are bound by legislation in a way that the NHS never seems to be

I don't know, but I think if she applies for support because she has an unsuitable wheelchair and needs someone to push it then you may find SS talk about part funding with the NHS (or at least apply further pressure). It would be far cheaper to give her an adequate wheelchair than pay PA's to come in a push her around. But there is legislation to supply the PA's, rather than the wheelchair iyswim.

You always need a bloody game plan when dealing with the authorities - it's a PITA.

hi by sounds of it your sister can not propel herself around indoors and under that critera she should meet for a nhs power chair

Sadly a 1000 will not go far for a powerchair especially as needs lateral support .
My new chair is coming in at just over 14K

SS come round, but because she has teenage children (who are classed as being able to care for her, depsite being in full time education and still school age) and a partner, she is able to leave the house in their company.

She manouveres herself around the house against the wall, and in circles, through sheer grit and determination. Which appears to be shooting herself in the foot (excuse the pun), as therefore she's seen as being able in the home.

There are no other relatives other than my sister's dp who's money needs to support her, my mother, and myself.

I honestly started this thread just to get a better understanding of my mother, was not bashing the NHS. The reason I am unable to help my sister, is that I'm providing for my children, and have no spare pennies.

But and this maybe wrong and I hope to god never to be put in this position, but if one of my kids became ill no matter how old, I would be doing everything in my power to provide, even if it meant selling the clothes on my back.

But my mother won't and I just don't understand it.

OP welcome back. I'm frankly shocked at how this thread has kicked off and has become accused of being "fishy" and of being another example of showing that disabled people are a burden on the state. I'm very sorry that you had to return to that.

Yes in an ideal world the NHS / SS would provide everything that people need to allow them to be independent functional beings. We don't live in an ideal world (and it's become a damn sight less ideal recently). As I said upthread, I deal with this on a daily basis and it makes me very very sad indeed. Not only do I hate to see people suffering because of decisions that are made, I also hate being at times shouted at and abused by service users and their families.

So, taking that into account, unfortunately family (if they can afford it of course) or charity are needed to provide these things. It's shit, utterly shit, but that is how it is.

The shit thing is that state being inadequate, not the existance of disabled people.

Social services sound as if they are completely ducking out of their responsibilities. I think she needs to go back to them - if her children are acting as carers then they will be entitled to their own assessment of their needs (and this cannot be refused). This is very very typical of SS. You have to really battle with them - but there IS the legislation to support this - whereas there usually isn't for NHS related things.

I would get SS back in, if they do not deliver put in a complaint and copy to the MP and local councillors. I have had to do this repeatedly with SS but we do now have a sensible care package which means that I am able to care for my son without cracking up.

KalSkirata - DP has crohns disease so i know something of the strangeness of the NHS appointments system. he is always going to get sent an appointment but then it doesnt happen & he makes several calls....

he also has a bone deformity which would have killed him as a teenager as he grew - he had his chest cracked open & nolonger has a fully joined up rib cage. it is genetic in his family. & my DF was paralysed due to a slow growing brain tumour.

so when i look a wasted money in the NHS i think it is a disgrace. & its money is limited.

Oh do - thats my point - i am free to make it - like it or dont.

Wasted appointments are a problem and twice I have had a letter telling me that I have missed one and how much money I have cost the surgery.

The second one was their mistake. I was offered two time slots, 12:10pm and 2pm. I chose the 2pm one but they booked me in for the 12:10pm one in error. When I arrived I was told I was late, then the receptionist who made the mistake overheard and remembered speaking to me, so she apologised but I still had to sit and wait for the doctor to fit me in around other patients, making me late elsewhere. Then the practice manager wrote to me to tell me they could strike me off their patient list if I wasted appointment times like this again in the future.

The first one was at a different surgery and was much worse. I had a midwifes appointment arranged several weeks in advance but gave birth to my daughter prematurely and she died. The hospital were in touch with my GP and she was expecting me the day after I left hospital so she could give me a prescription for medication (the hospital only provide a small amount and I needed more).

Later I saw the midwife for my check-up and spent 45 minutes with her, which was really great of her to spend that time with me.

Shortly after that was the date of the appointment that had been booked in advance. Obviously I didn't go, because I wasn't pregnant anymore and the GP and Midwife were aware of that. Again the practice manager wrote to me to tell me how much time and money I had wasted. I was asked to ring up to tell them if I wanted to remain on the patient list and when I did the receptionist was quite rude to me. I had to explain that my baby had died and that the GP and Midwife were aware of that, had both seen me since she died and had said that they would ensure all my appointments were cancelled and I wouldn't be sent any pregnancy related information from them anymore. Obviously they didn't do that.

I know this must be less likely than people just not turning up but it must be more common that you might think for it to happen to me twice and at two different surgeries, so not just one bad system or just one person not doing their job properly. I am convinced that a lot of errors like this are down to the computer systems they pay thousands of pounds for.

It took me three months to get a new patients appointment because every time I tried to make one I was told "the computer won't release any dates right now, call back another time." I don't know why the computer has to release dates, and it must be really frustrating for the staff to be unable to do a simple task because the computer system locks itself.

No-one I have similar issues. Ds3 has problems with his eyes requires regular appointments. I cannot take ds1 as well (severely autistic) and have no-one to look after him. So I ask for appointments in school hours. I was repeatedly given post school or school holiday appointments so I rang to change. Where I was offered further impossible for me to manage appointments. I was then told I had refused 2 appointments so they could refuse to treat ds3 FFS. it was a totally non urgent appointment- he could have waited an extra month or two with no problem (he accidentally dropped off their list once and wasn't seen until I had him re-referred and that wasn't seen as a problem ) had I taken ds1 the appointment would have been impossible so that would have been a waste of money.

YANBU. Families should support eachother where they can, no matter if it is a parent supporting a child, a parent supporting an adult child, an adult child supporting a parent, siblings supporting eachother... Otherwise, what's the point of being in a family?

I can't imagine being in a position to pay for equipment or help my parents or my DS desperately needed and choosing not to do so. That isn't infantilising them, it's trying to be a decent person with family values and a sense of responsibility for those I love.

It's people saying that xyz is the state's responsibility that leads to the breakdown of society. How many parents think it's the school's responsibility to teach their children correct behaviour? Or the dentist's responsibility to teach their children to brush their teeth? Or the local PCT's responsibility to provide home care for a parent with dementia? Quite a few and they aren't the kind of caring, compassionate people I want to be friends with.

I look forward to you paying for the next doctor's appointment for your child akmd as you're so keen for families to pay for basic care needs.

AKMD I presume you use private education and heath care

i have realised lately that the nhs is very basic in its care. i had a sports injury (fell of a kerb, nothing high-octane) and the nhs was only able to provide enough treatment to allow me to walk 100yrds then declared me 'cured' enough because i had an office job so didn't need to walk more than that.

as a fit, healthy otherwise 32yr old at the time, i was not willing to settle for that so spent a fortune on private physio. luckily i could afford to but i made a lot of sacrifices to afford it. thankfully i am now back to full mobility...

but it made me realise that nhs is for basic need only now

Blimey check this out for the true meaning of the words 'postcode lottery'

www.gblwheelchairs.com/shop/product/3427/

sadly most disabled people need more than basic care.

Yep may - similar here - aged 24 bad back problem - frequent bed bound periods - saw a consultant who asked what set it off. I replied anything from picking up shopping bags to running to horseriding. He said 'well I suggest you don't do any of those things then' and that was IT. 5 years kater I earned enough to pay for a chiropractor who sorted it.

It's even worse if your needsare more complex though.

I would love a definition of 'basic mobility needs'

www.gblwheelchairs.com/page/funding_options/38/

yanbu

(Lainey. most working Americans pay not only taxes at a rate comparable to that of Britain's, with Federal and state income tax, they also pay county taxes based on assessed valuation of their property, municipal fees and charges for water, rubbish collection and sewage, taxes for their cars both state and local, and on top of that, a chunk of their salary is taken to pay private health insurance. Americans end up paying a bit more than the average Briton between the hopping and the trotting, imo.

I paid a county tax of about $6000 pa on my approximately 1000 square feet house, plus all the other taxes, etc. During a period of self employment, health insurance without maternity coverage came to $800 per month for a family of two adults and four children, and it didn't cover any well-child visits for jabs, or any medications, just basic emergency services and ambulance charges. Hence me applying for the state system when I was pregnant.

And that American health insurance usually comes with a 20% co-pay and some out of pocket threshold before the insurance will pay a dime. If you miss a doctor appointment you get a bill just the same as if you had shown up.)

People should value the NHS because the alternative is citizens going broke trying to pay healthcare costs, but I think there should also be a realisation that it needs to be properly funded. And the terrible mismanagement needs tackling in a bad way.

Kal: 'And now come the mother is totally to blame for the OP's sisters situation. Not other relatives' -- because the mother is always the one to blame. Seriously, she is the mother. This is her child who is suffering.

There has been no women bashing or disabled people bashing here. Just puzzlement that a parent could see her child in need and not give her what is needed. It happens to be a mother in this case.

Living, your mother is a heartless cow.

NoOnesGoingToEatYourEyes -- what a terrible experience you had.

Something similar happened to my mother and my sister and me after our other sister died, having been taken to hosp unconscious in an emergency situation. A few weeks after the funeral we were able to see a doctor who had handled her case and took the opportunity to enquire about Dsis's jewellery, which had never been returned to us, at the relevant hospital office. The woman at the desk barked at my sister about leaving property behind, that they had been trying to contact our dead sister for weeks, and that we were really lucky we had finally shown up because they were going to clear it out. She changed her tune when informed our sister had died.

It's shocking Math and I am sorry about your loss and your experience afterwards.

All it takes is a little communication and they could save themselves a lot of the time and money that is wasted and save many people from upsets like this. It wouldn't fix the whole problem but it would help.

I haven't seen anyone say that families should have to pay for adequate healthcare, only posters saying if you can then you should.

Personally I would pay more tax for a better funded NHS. But we dont have a government that is going to do that. So you can either pay or wait. Paying to jump an NHS queue is wrong. But paying so you leave the NHS queue and making that queue shorter, what is there not to like?

op, YANBU

if you have the money then you should use it