continuing care panels and appealing

Share your ideas about the practical side of caring.
I have been dealing with my mother's deterioration in hospital over the last few months and then discovered I had to deal with this flaming funding issue- the NHS staff decide whether my mother should have NHS funding for her care for her conditions of ALzheimer's vascular dementia and tumour in the brain. Four months ago she was walking around and making her tea and now she is bed bound and doubly incontinent.

I was told politely by the panel, who took all of ten minutes to decide, that my mother would only get nursing funding not conintuing care - this means the NHS only pay £101 per week toward care but only as long as she goes into a home - but we want her to stay at home so in fact she does not have any assistance at home from NHS funding. The issue of NHS funding is all the more important when people have their own property.

The thing is that try as I might I could not get down to the nitty gritty - I got out the national guidance, I found the local PCT info on the process; they use ten criteria to assess the risk an inidividual poses and then score them. The thing is I cant' find where the PCT defines what score will result in continuing care - it is hardly a transparent process. I understand from the Alzheimer's Society who were great by the way and very supportive, that one can appeal this decision even after the death of the person whom it concerns !

But even if you want to appeal realistically you need the medical records - I have been told, even though I have been through their specific record requesting procedure that they cannot give me a copy of the file while it's on the ward.

Does any one else have any tips ! I am going crazy with the red tape.
You could make a formal complaint that they are making it impossible for you to exercise your legal rights, and have failed to make their decision-making process clear. Contact your local ICAS service via PALS.
When we lived in Wales (bear with me), we got hold of an Assembly document outlining the criteria for people to qualify for CHC. There was a long list of equipment and if that person used just ONE item of the listed equipment, on a daily basis, then they qualified for CHC. Hubby qualified under that criteria, because he uses a hoist and slings every single day, but the NHS disagreed with that and also said that he only qualified for the nursing care. Well, he can't do anything for himself (he's tetraplegic with spinal injury), can't dress or wash or shave or eat a meal or hold a cup (can't even hold a pencil, let alone a cup of tea!), so we took them to the Tribunal who immediately tore the local NHS apart and said it was obvious that this man needed CHC on ALL ACCOUNTS.
Your mum (sorry) isn't going to get better, but is going to need more and more care as she degenerates (sorry, don't mean to be horrible, you know what I'm on about), like my hubby, so they should qualify her for all accounts of CHC. And this is just it, CHC should be looking to the future needs of people, not just the here and now. Future needs mean MORE all round care, not the same as it is now.
Take up the complaint procedures or the Tribunal procedures (the Tribunal people are usually from a different Health Care Trust than your own). You must if you're not happy with what's been decided.
YES, IT'S ALL ABOUT MONEY AND THE NHS, AND IF THEY CAN GET AWAY WITHOUT PAYING FOR THINGS .................. THEN THEY WILL.
Good luck and take care, love Fran (and welcome to CUK)
and ps. the local NHS Health Trust did their damndest to try and stop us going to a Tribunal and made it as difficult and as stressful for us as they could, but we didn't and wouldn't be deterred as they were WRONG, as it was proved. Be prepared for a fight, but stick with it, they are just waiting for you to give up. It's all about money, matey, that's all it's about and that's not a good enough reason for them to take wrong decisions. xxx
yes thanks for the encouragement I will not let them off the hook !!
Any more news about what they're doing? Still thinking of you!