PSP Association
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continuing care

I have applied for cc for my sister who is in a nursing home. We have been assessed by the social worker and cc nurse back in June. Promised an answer within 3/4 weeks. We are still waiting for an answer after one cancelled appointment, meanwhile my sister's condition has got worse. I have been advised to collect all information of her present condition and behaviour to present to the powers that be WHEN we get the appointment for a decision. Why should we have to struggle like this to get what is needed for those struck down by this dreadful disease. There is money out there. It took 5 months to get the Nursing Needs Care allowance for my sister. It makes our job as family, carers doubly frustrating knowing the sufferer is entitled to this money but you have to be practically on your death bed to get it. Sorry about this - it makes me so angry when I see how much is wasted on other things in this country. We have enough to cope with watching our loved ones suffer without having to fight for help, support, essential equipment and money. I will now get off my soap box and try to think beautiful thoughts!!


4 Replies

all these "allowances" are made so difficult to claim that it is so easy to give up - straight into the government's trap! The nurse at Franks care home just dismissed my questions with "well he feeds himself". Maeve, where is the best place to start please. I am going to go for it. Do hope you hear something again very soon.



Hi Maeve....stick at it !!!! Whatever you do, don't give up. We were in the process of going for CC when Frank deteriorated rapidly back in April. It was set to go before the Panel but sadly Frank passed away the week before. Unfortunately it's a lengthy process & then depends on funding availability. Our District nurses, Social worker & local Hospice were all doing as much as they could to hurry up the process but to no avail.

We all have to get on our soap box at regular intervals when dealing with this horrendous illness in order to get the best possible care for our loved ones.

Although I am no longer a Carer, I feel for you & agree that money should be better placed.

Take care & keep smiling. Love Hazel B xx


My husband was granted CHC over a year ago. In my experience it's those who shout loudest get! Everything takes weeks and weeks to get sorted equipment, respite,extra carers etc. They will not understand that this is a progressive disease and things change rapidly. I find dealing with these people almost as stressful as watching my beloved husband cope with this terrible disease for over 10 years. My advice is if all else fails contact your local MP and give him all the facts. It is amazing how things can move forward then!


Hi Maeve

I was told that my dad would have CHC on the day he passed away. It is a really difficult process and because the condition is the way it is it somehow seems to slip through the criteria, but keep at it. If you don't get it this time, push for a review very quickly and keep reminding them of the speed of the condition. Good luck with it.

Lesley x


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