To wonder who david cameron thinks is deserving when people with hospitalised disabled children are not ?

[bumpsoon]

Now i know many of us were fed up about the whole CB being withdrawn from those over the threshold etc , i was ,but if that meant the Rivens of this world got a bit extra then i wouldnt mind , on the news this morning it said that those getting disability living allowance (might of got that being wrong) will not be getting it if their child is in hospital , because the nhs will be providing for the childs needs .WRONG ,WRONG,WRONG . the nhs will not provide toiletries, laundry facilities ,decent incontinence gear or (unless the child is in ITU) one to one care

Yes, I am the one bringing up their son, like I said "I keep bringing the death of his son into it because I think it's fucking insensitive and messed up to keep going on about how he had it easy when his son died"

I can keep cutting and pasting that but don't really see the point.

I agree with your last line. My point is that you can't go on about how easy he had it when ease isn't just financial.

I agreed with WetAugust's 20.31 post on this www.mumsnet.com/Talk/special_needs/1036620-OK-let-s-play-Top-Trumps-then/AllOnOnePage#21206533. Not often she and I agree, but I remember reading that at the time and thinking thank goodness I wasn't the only one who felt that way.

but hasnt it always been 28 days for adults? why isd it different for children?

wtf, so now we are bringing old threads into it.
so it is top trumping to say money makes it easier....
ffs of course it does
you can pay for a care
and stuff like that.

why is it hard to understand that?
tbh I think this is getting a bit childish now, people are allowed to question the PM policy.

I like that I am so psychic that I could predict what would be said next.

I don't think you can piss on someone's experiences as a parent of a disabled kid if that disabled kid is now dead. I think it's disrespectful. I think I have made that point very clear. No, it's not relevant to this debate but if you're going to bring up his experiences as a parent of a disabled child, you can't do that divorced of the knowledge that that child is now dead.

I agree that money makes things easier. I have said that. I can't make my points any clearer. I just think using DC as a 'well, it was OK for him because he's rich' is distasteful because how could anything be really truly OK for him and his wife ever again with their child dead?

Madness. all the car park costs and petrol costs and buying sandwiches and coffees at the hospital, maybe paying a childminder to look after other children, or presents for grandma and granddad if they are looking after the other children.

It's a really cynical and heartless approach. Wouldn't you think he'd have a gram of compassion after their own child spent time in hospital. Unbelievable. He is just heartless.

but other carers of diabled people face these costs not JUST parents of disabled children?

i did a 60 mile round trip most days for 18months.

I topped up dh food with high cal stuff, high protein

as did his mum

his mum did his dressings

i took him out and about off the hospital grounds as nurses couldnt be spared, and he had to have a trained person with im at all times.

we did his exercises of walking round the hospital with him, again as he couldnt go alone

we paid for car parking

i had to rely on people to care for the children. pay them if needed.

not for dh no. at the time dd1 was on dla, so had it for her. so ididnt lose it in that respect.,

Even now, 3yrs on, as a family, we are still clearing some backlog of debt.

His mum was working as a home-help carer herself, and then coming stright to the hospital each evening to do that part of the day.

As a family we didnt qualify for help or support via ss, as dh wa sneither 'seriously ill' or teminal but fell in an awkwARD 'GAP' WHERE WE DIDNT GET HELP, or couldnt because of the level of training and care involved.

dh was in hospital for longer than expected due to the PCT refusing to sort out carers for at home for him.

All this has been in place for as long as I can remember, under a Labour government - where were the wringing hands then?

And whilst having money does make certain aspects easier - buying in care and services - you still have to do deal with many parts we all have to deal with.

Education usually through LEA services, as private schools don't take disabled children. I'm not sure if there are any private SLD schools, are there?

You can buy in daily therapy but you will still need to use NHS hospitals for serious problems like epilepsy and any acute care needs, as private hospitals don't have ICU, which is often needed for aftercare for a complex child

Money does make parts easier but the it doesn't help with the worry of health needs or the day to day mental grind that comes with having a severely disabled child

I've supported all the cuts so far - i think they were necessary and have been as fair as is possible.

But I would be very upset if money was taken away from disabled people or those caring for disabled adults/children.

Helping those who, through circumstance, have been dealt a cruel blow is the very essence of what the welfare system is about.

herbietea - i read that (although was unaware of it) but my fear is the cuts in two weeks will go further.

I think the elderly and the disabled should be untouchable.

tbh, i dont think we should be worrying about this. what we should be lobbying for is more nurses, better care packages and respite.

A lot of the issues we had was due to lack of time, training and funds. we knew that dh life saving LVAD was epxensive, but what cost more was the care and time involved in training people to look after him. which the PCT dragged its feet over funding. then after the transplant, we had a worrying while trying to see if the PCT would finance his drugs as well.

no-one is going to leave their loved one in hospital with no help, with or wothout DLA. we wil alwasys be there to support them, but at the end of the day finances in the NHS are so limited.

Riven, didn't they show you how and give you a physio plan? It is normal and always has been normal (in my 16 years of dealing with disability) that you do the physio at home yourself. Same with OT. We do 2-4 sessions a day from physio and OT care plans

Surely, your daughter doesn't only get physio given by a physiotherapist?

we didnt get 'physio' for dd2. just one session, shown what to do, and then left to do it by ourselves.

dd4 possibly needs physio, i know it will be the same sort of thing. stretching exercises, strengening etc then carry on at home. might get a follow up appointment with her though.

btw, we did most of dh physio care as well. the walking with the frame, building up his strength etc. as one physio couldnt deal with wards of patients on her own

Hip disclocation is diagnosed through xray so don't think you are lacking in not knowing, I don't think physios can tell either

Labour failed every single disabled person in this country, they made it almost impossible to get support and help for daily living, aids, education by ignoring the problems and letting LEA and NHS get away with the most minimal of services.

I had my child during the last tory government and I can say that our services were cut or removed as soon as Labour got in. We had much more before Labour got in

I doubt the tories will do much better but I do think it's unfair to blame all our issues on the new government