QUESTION ABOUT CONTINUING CARE

[Guest]

Can CUK advise on this please?

Am looking after mum at home and have been for a number of years. She has dementia and has to be fed orally by syringe (not peg feed). I have PCT funded Continuing Care Support for my mum's carers to feed her and I have trained them. I am looking after her full-time. I also do some feeding sessions. Her feeding sessions total 6 and 1/4 hours per day. I was at one time doing 17 and 1/2 hours per week unpaid till social worker got on the case. I love looking after my mum but have to have support as I cannot do the feeding all the time as I could not get on with anything else. I am not paid for feeding.

I have been told by another carer who is very knowledgeable that he thinks that all the feeding should be fully funded by the PCT. I had heard this too from the social worker. When I was doing more of the feeding, , before I got more help, the nurse who came round to do the review was asked to get me more help, which he has done. However, in the course of that review, I questioned how much feeding support I was entitled to and he said that the PCT excpected the family to do some of the feeding otherwise mum would need to go into a home.

I think that this may be rubbish as I know that they cannot make mum go into a home and I would not allow it. I have EPOA. I put her in home for 2 and 1/2 weeks a year or so ago to have some respite after 4 years without a day off and they nearly killed her. She has legal aid for a possible court case for that.

I would like to know if the PCT are legally obliged to fully fund my mum's feeding support so that all of the feeding would in theory, be done by the carers, as she is classed as having severe needs. She has lewy body dementia, is completely unable to speak, is immobile and doubly incontinent.

She has a full care package from social serivices and is on pension credit. I have my own (rented) home so I am classed as not living with her although I am there most of the time.

Any factual information about this gratefully accepted.

[Guest]

How sweet, thanks so much, I am ok really........

[charles47]

Hi Danielle, and welcome! CUK has a helpline that can give you more information - look at the "New Members Start Here" section for details. We're all carers here and can give you pointers, but they can give you more personalised and more accurate information.

Some funding decisions vary across areas and it depends very much on how individuals are affected in terms of their health needs: some very strange lines are drawn between what is "health" care and what is "social" care, with no detailed guidance or legal guidelines from government. Age UK and the Alzheimers Society have raised concerns about how this is treated at a national level. Especially as the same government department is responsible for both.

As far as your mum is concerned, and only based on what you've told us, it seems to me that most of her needs are health needs due to her inability to communicate, her doouble incontinence, inability to self-care including feeding.

Now for the hard part.

If the PCT decide they are responsible for the funding, they will almost certainly try to put her in a nursing home because it's cheaper and easier to do so. However, a lady by the name of Barbara Poynton won a legal battle to keep her husband (who had dementia) at home and to have support there. It's well known that people with dementia are happier in familiar surroundings and it would be a mistake to assume that they don't recognise the fact even when they are unable to communicate or outwardly show any signs of emotion.

[Stacey]

Danielle,

Sorry to say, but if the reviewers believe that your mother cannot be properly cared for at home Continuing Care will place her in a nursing home. It's a financial issue as well, it might be less expensive for the NHS to put your mum in a home rather than pay for more carers.

[g.herschel]

What happens when the P.C.T.`s are gone April 2012 ??? your G.P. will have to pay direct for the funding ....if it is cheaper for your mum to be in a care home then for your G.P to fund her care .... how will you feel ,,, this is one problem we will have to look at closely as many G.P`s will go for the cheapest care suppoprt , not the best ....

however we must remember what CAMERON , CLEGG & LANSLEY all said just last week the patient has the right to chose the care they need , they can chose the consultant , surgeon & hospital , we are not removing the patient the right to chose ..and if the patient wants to remain at home to be cared for with respect , dignity and compassion then they will have the right to remain at home,,, you chose .....

[Guest]

Thanks everybody for your advice.

I have tried to get through to the advice line many times but it is very difficult and the times are so restricted.

I shall continue feeding her for the sessions I have although i want to find out the legal position. I shall never put her in a home.

Thanks to all

[charles47]

Danielle - you can email the helpline

[no1mum]

Hi Danielle,

It's worth you while to keep trying the helpline, it does get very busy.

Karen

[Brindleboy123]

Hi Danielle. Some excellent advice already given to you I see! I can only write from my own experience when Mum was alive. Mum didn't have dementia but did have many complex medical conditions. She was at home with a care package that provided 4 daily visits plus overnight care. The proviso from social services (who were paying, with Mum making a contributio of about £50 per week) was that I came over from Spain every 3rd week and took over for a week.

As Mum deteriorated her needs increased and it was at this point that both the hospital and social services deemed that it was not safe for mum to remain in her own home and she was placed in a nursing home and at this time she was granted Continuing Health Care. However, the district nurse realised that Mum wanted to remain in her own home and was working very hard to get the funding for this to happen. That said, it was made perfectly clear to me that because of the input that was required, it was quite possible that the funding would overtake the need, ie because nursing home was cheaper, that is all the funding would provide for. Mum passed away before any decision was ever made in hospital following a MRSA infection.

I am not convinced that the transfer of funding to GP's will make life any easier whatsoever. In fact from the 15 years I spent working in the NHS it seems from what I have read that the wheel has just gone full circle and the proposals appear to be little different to the GP Fundholding that was in place before..and that failed miserably!

We'll wait and see.

I really hope that you are able to resolve the issues that are causing such concern for you and your Mum. Keep fighting, that is the one thing I did learn from the whole experience of caring....fight, fight, fight. Sad reflection on life but inevitable nowadays it seems.

Bell