Through the instigation of the nurse at the hospice who was concerned about V's decline over the last couple of months , the OT and community nurse came to give us an assessment interview re CHC funding on Tuesday . We had one a few months back but did not qualify as we didn't register enough points . This time we did and naively I thought our case would go forward to the panel who make the decision as to whether or not you receive it .Wrong - this interview means that we have qualified to having a report produced on V by all those who have involvement with her case and if the findings are in our favour then it will be submitted to another panel who will then decide whether or not we should have a full in depth assessment. If they do decide to follow that route then the in depth assessment will go to yet another panel to see if they will consider funding .So our assessment was really about whether or not we should have an assessment. Don't you just love bureaucracy ! At the interviews V' always says she is fine in each category and I wriggle uncomfortably and have to try to spell out the truth diplomatically and afterwards she says "why did you say that about me ? "So it looks as though we have to slog on through the process .As if life wasn't hard enough .
Georgepa
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Georgepa
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George the social worker said today, that he will do he's report, the district nurse has already done an assessment, then they meet back at our house, where we have another form to fill in, all together, and they have to agree between us. Then it goes to the panel, I just don't understand how a panel, that has never met them can make an assessment?
They always seem to perk up when someone comes, they never get the true picture, I think you have to find a way to get the true picture over, I also had letters from the hospital, which he said was helpful, he also asked me if the district nurse had see the letter, I told she had seen them.
George let's hope it goes through for us all, our partners are terminally ill, and are not going to get better, also gave the social workers brochure and a card from the PSP soceity. Fingers crossed. Nice to see you back George, not heard from you for a while.
Oh come on George! Did you REALLY expect this to be easy? Do you really think someone out there cares? The longer it takes, the more bureaucracy they can use, the less money gets paid out. One day someone will realise, that helping us keep our loved ones at home and not spending money on all these very expensive salaried, jumped up jobs worths, will actually save the country a fortune!!! In the meantime, you, me and everyone else here, has to waste time and effort jumping through these hoops. We have to go through it soon. I don't know when I will find the time. Something will have to go that day, S's shower, breakfast, His exercises. Although, that might make the point, if I have him sat in his soaking wet pad, starving hungry, or actually eating his food. They can actually see for themselves what goes on in our lives!
Sorry, feeling very bitter today. Had the nurse from the Hospice around. Very nice, is going to try and get S back into day centre. But the main thing she is concerned about is getting this CHC. That will be at least six months, if we even get it. I need help TODAY. But no, I have to wait until we are awarded CHC before She will even discuss what help I need. Wish I had the courage to press his emergency pendant and run, before they answer!!!! Bet I would get the help I need then!
As my old dad used to say ( to all the professionals he met) every time he needed anything.......they string it out as long as they can so I've gone before I get it.
After the inititial assessment they came to us for the proper assessment and took nearly an hour asking questions. Then they said we qualify for the assessment. I said, " what have we just done then" and the reply was, "The pre assessment". I asked them if the one we had a few weeks earlier was a pre pre assessment. She said that one was to see if we qualified for a pre assessment.
Good to hear from you Georgepa just sorry it wasn't better news.
Hi Nanna B - yes that on top of my £7.50 per week made me think that perhaps the best idea would be to sell the house and book a first class cabin on one of the big cruise liners and sail around the world until the money runs out and then both of us to discreetly drop overboard and save everyone a lot of bother !
Colin and I said we were going to do that when we retire. Cheaper than a care home. We weren't going to end up in the sea though. Thought it may upset the boys but we would come home destitute then the state would have to look after us.
Oh George, Heady, and NannaB what we all go through to get any where, just can't understand why there is so many assessment, takes them ages, only to be told we don't qualify, for god sake they are terminally ill, doctor after doctor, say you should be getting it, NannaB has already been through all this, so she now what we are going through, we are saving the government millions, U.S. Careers.
George what did you decide to do with the large amount of 7.50. Love to you all Yvonne xxxxxx
Its all like something from Kafka. What a waste of money all these assessments are.When I think of the money we save them it makes me so angry. None of us has the time or energy for a campaign !!
Good luck, George
Jean x
Yet again I sit here in Turkey absolutely amazed at how you all cope with UK bureaucracy. I have never been as tired in my life but am coping. C has suddenly deteriorated over past few days, started refusing food and become even more taciturn. My daughter arrives next Tuesday to move in and help and am thinking one of our first joint tasks could be to go out and buy a wheelchair as C's walking has also suddenly deteriorated. How on earth you all cope with all the assessment nonsense I simply do not know. Good luck to everyone.
Dear all, keep at it on the CHC front, it's a painful battle! But don't give up! Make sure you're present at the multidisciplinary assessment (you have a legal right to be), and that you discuss and put forward your views on each area that the form covers (what the district nurse, physio etc have seen in their short time with your loved one is in no way going to represent the full picture, so give it to them, and make sure it's included in the form! If you disagree with their assessment on an area, eg you think it's "severe" but they think it's "moderate" etc, tell them, your views legally must be taken into account) and also insist upon going to the Panel where the final assessment is made (again you have a right to be there). Do NOT rely on the powers that be to get the job done! It's painful but keep at it! If you can find a friend or relative to help you then so much the better as to participate in this battle when you have your full time job of looking after your loved ones is not easy. Good luck xx
Yes, that is how it goes. I have exactly the same problem with my wife. Basically you have to be already with one leg in the grave before you might quality for CHC. And the NHS does not use certain criteria at all in their assessment such as for example pain management. All the fine words from the NHS about quality of life and caring for the elderly is totally meaningless.
we had what I thought was the final assessment a while ago , The Parkinsons nurses along with the Distruct nurse , social worker and a lady from CHC visits the house to ink lots of boxes .
I found that all very stressful along with confusing even though O was prepared .
my daughter came as well . when they all left we just looked at each other with open mouths and dismay .
Told me they would go away to hold a further meeting . Since then have has a mental health assessment SALT test now waiting dietician , They have measured him to guess his weight !!!!!!!
still waiting and the last message from the district nurse told me ther is going to be a final meeting with a NEW panel who won't know us
What on earth is that all about . the councils tell us they have no money yet they have enough to pay the wages for all the panels involved .
my mum was in a nursing home for three , A really severe stroke . the week she did they told me she was eligible for CHC .
it takes such a lot of energy to go through it all and we need What we do have to care
Hi all I am sorry to hear about all the troubles you all seem to have with getting CHC, seems different in Wales no pre- assessment probably as M had broken arm and had little communication skills and I was in denial for any care need. I had no NHS or LG contact for over 6 months so may be they felt guilty. Assessment done by DN and SW form filled with my input, panel within a week no invite but DN who did assessment was there. 6 monthly review same team but when M had choking fit, SW changed a couple of comments up from moderate to severe. I assume as Social and nursing care budgets combined in Wales a lot of the petty bureaucracy removed. Only down side I see is that under CHC only hospital SW available who have no experience or limited help with home care and respite. I have to have something to chew on.
Best of luck with your trials and tribulations but you should all get CHC funding the sooner the better. Tim
Bet they were doodling on their clip boards so that another interview would be required. I think this would be part of their job requirements! Couldn't you just scream out loud and maybe you should have during the interview, that might make them stand up and deliver.
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