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Carers UK Forum - Search
Howe exactly would we pay any sort of a charge when they have stopped my son's dla and my ca? Even though we spend 7 hours a day at the hospital and are still caring.

At least with elderly parents you can console yourself that they reached an old age and had a life. My 31 year old son is currently fighting for his life for the 5th time. He never got a chance at a life. No wife and kids for him, no employer willing to take a chance on someone in a wheelchair even ...
Our problem is our son has a large bedsore on the side of his head and the ICU nurses don't seem to be able to get rid of it.

If I had not argued with the ambulance woman who wanted to take my son to a different hospital further away he would be dead.....

It is also wrong that DLA and carers allowance are stopped when a disabled adult child is in hospital but continues when it is a child under 18. Its nothing but discrimination!

At least elderly people get some kind of provision even though it might be patchy. Young disabled people like my son (aged 31) get bugger all provsion especially when it comes to palliative respite care...

The hospital cinema had arranged for Robert to have a private screening of the second Independence Day movie - in 3D!! We had a nurse and an auxilliary along with us and they took care of his needs so we could watch the movie. He had asked me to bring clothes in for him - it was wonderful to see him...
Yet we get another nurse who has done her best to arrange a surprise trip to the cinema in the children's hospital tomorrow for a private screening of Independence Day 2. You should have seen his face light up when he was told we are going. We seem to get really good nurses or really bad ones... Eun
Robert has a trachy. For him to cough a tube has to be put down his throat then its pulled out slowly while you press the button on the suction - this is what they call a "cough" but they don't let us do it as yet. Plus if we did do it we would probably see even less of his nurses as they do bugger ...
We had to "comb" the ward!