PSP Association
5,180 members7,184 posts

You will NOT believe this!

As you know Bill has just come out of hospital and since we were not granted CHC we are self funding. Foolishly I let our Borough Council sort out the care package. Now the council only stipulate that we have 4 visits a day and they have to do certain things in the time then they can go. BUT (and it is a big but ) the agency bills them for the time allotted not the actual time and that cost is for us to pay. So, in the first day they have only done 60% of the time and not done so much as pick up a dirty cup extra to their tasks yet we are supposed to pay them for 100% of the time!

I just do not understand how they can do this!

10 Replies

Kathie are they having a joke, when you are self funding, can't you stipulate what you want them to do in the allotted time, if you are paying for it? When we had people in, if George did not want to do something they just sat there, and I thought I am paying for this with hard earned money, that is why we decided to get rid of them, and do it ourselves.

I don't think it should work like that if you are paying them. Good luck. Why was you not granted CHC? We are applying, but we have been told it is not looking good, did you appeal? I will fight it, what did we pay all the tax all those years for? It was a lot of tax we paid, so unfair, when some one is terminally ill, they should get it, they are not going to get better. Yvonne xxxxxxx


Hi I see to all my husbands needs. I was told we would have to pay for care if we needed it , and the very not so nice man from the social services m informed me if we didn't , it would go against us applying for CHC. I'm new to all this is his advice correct


I never had any help at all, apart from 5 hours hospice day centre, before applying for CHC. As I had interrupted sleep ( like every other carer of someone with PSP) the hospice suggested, if I could afford it, I hire a night sitter. An agency then phoned us offering their services at a ridiculous cost and I said, thanks but no thanks. I continued got note every time I was disturbed in the night. The hospice asked me if I had taken on night staff and I told them I would carry on alone for as long as I could. It was then they suggested CHC which I had never heard of. They suggested I get a night sitter until a decision had been made which could take ages. Logic told me if SS saw that we could afford night staff, they would let me get on with it so I didn't do anything about it. I walked round like a zombi and slept whenever C slept during the day. We were awarded CHC the first time of claiming and withing days of the decision being made, C was given night sitters 5 nights a week which has now been extended to 6.

It makes me sad to see how others have had their claims rejected. We all need help, not just a few.



They shouldn't do it. You pay, you are their employer (sort of). I would ring Social Services and complain and also ask for CHC to be considered again. If they think you should have help 4 times a day, and you are there the rest of the time, that sounds like continuing care to me. I've just been looking up my CHC forms. They sent me a copy of the decision support tool, one of the forms the panel base their decision on. I've just re read it and on nearly every section is written, update from Mrs H...... I queried nearly everything they had put on the form which meant they changed the level of risk from low or moderate to high.

The whole system is very unfair.

I do hope you manage to get things sorted so the carers do what they are paid for.



If you think the agency is reasonable quality, contact them and ask if they would charge you the same as the council. If they do contact the council and say you will deal direct with care agency. The council will no doubt say that you are open to hazard as they act as health and safety as well as overseer of standards, which by the sound of it they are not doing properly. If they say 4 visits are required does that not indicate a high level of care required which is what CHC is all about. also you need to appeal the CHC decision. Google Continuing Health Care some good articles as well as check list about what evidence is required. Also some companies that help you apply.

Sorry if teaching you to suck eggs, best wishes Tim


Surely, if you are self funding, you should be in charge! Get the manager of the Care Agency in and talk about their services. My sitter, from the agency, will do my ironing, hoovers the floor, cleans my kitchen. Anything, she can see needs doing. She comes every Monday for four hours, although, she has just started coming 3/4 hour early, as she now showers S!

Remember it's YOUR money, you don't have to take this shoddy service.! Complain! Complain! Complain! Or get another agency! I know that's easier said than done! We have to use our energy sparingly and fighting Social Services shouldn't have to be the main drain!!!!

Lots of love


1 like

Unfortunately, I do believe it. More work for you, I'm afraid but you need to complain to the agency and the council. Citizen's Advice bureau or Age Concern may advise you of your rights

Good luck, ! X


The Council organised G's sitting service, we were allocated 3 hours a week, it was disastrous so I demanded that we had direct payment. I then set the sitting service with the local hospice who last year set up a separate company to do sitting and care, and they have been fantastic. The council pays a certain amount and we make up the rest.

We were told that we would have to pay for any care element by the Council as G has over the amount allowed to get free care, chap even told us that our place in Cyprus was being included in savings,even though we are trying to sell it in order for us to buy in the UK!

yesterday I had a counselling session at the hospice, and a meeting with the Day Centre Sister, both said I really needed to get care in for washing G a my neck has got a lot worse. G gets Attendance Allowance so I have taken their advice and contacted the care side who are going to set up something for me, as for CHC the consultant has said that at some time and she will help us with applying, just another thing to look forward to with blasted PSP.


Being self funded means that you are the boss. If they do not perform get rid of them. You should be invoiced not SS.

You are then in control.

I would advise to pull out and start again.


Just saw a BBC article about how most of the CHC applications are turned funding. I guess it's not just the US that is so neglectful - no comfort in that!


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