Cost of Nursing Home concerns

Hi, I haven't been on here since Mum went into a home nearly 18 months ago. She is 83 now with Parkinsons and Lewy Body D and used to live with me before I felt I couldn't cope with her at home anymore. Still feel dreadful that she moved out. She is in a nursing home which was recommended by her GP. When she moved it was all a bit of a rush and I knew it was quite expensive but was so glad to find a bed that went ahead. She found the move so traumatic it took about 6 months for her to settle. She is self funding (sold her house a few years ago)and running out of money. I spent ages looking into it all at the time but I now realise that I should have found her somewhere cheaper because if the local authority agree to paying for her care (which I worry they might not due to issues too complex to go into here), myself and my brothers will still be liable for about £300 a week top up which we cannot afford.

I am now about to start looking at other places with a view to moving her. It is a nightmare all over again.

I have been looking at the local authority website and there seems to be a lot more advice about costs, etc than there used to be even in 2011 when she moved. The news is not good. There is even some kind of sliding scale tariff that she will have to pay weekly out of the remains of her savings. Also I hadn't taken on board that she won't get Attendance Allowance any more if LA are paying for her care.

I think my brothers are going to be furious with me for not finding somewhere cheaper as they t rusted me to sort this out.
Not expecting any answers. Just wanted to share this cautionary tale.
There is such a need for impartial advice. The social worker who saw mum when she lived with me was hopeless with his advice as he didn't really want to know because she had savings above the threshold.
I feel so angry that she has had to pay out all here savings on an unnecessarily expensive home and it is my fault.
The great thing about this forum is that it is somewhere to vent!
Hi Choogler

really sorry to hear of your situation, have you definitely been told that the LA will not contribute to the current NH fees, as you could argue the case that it has taken a long time to settle and moving her would not be in her 'best interest'and detrimental to her health
the sad thing is it is a post code lottery and different LA's have different 'rules'.
also has she been assessed if she would meet the criteria for continuing health care criteria , if a person's nursing and medical needs tips (sometimes not picked up by NH ) they may meet the criteria for CHC funding under complex need.
google or look on the Directgov website for the criteria domains.
I know the government are changing the rules so the maximum amount taken from someone's house/savings will be 70,000 but unsure when this will start.
good Luck must be very hard for you all, but don't shoulder all the responsibilities
Take Care x
Hello Choogler

As Bubble says, you really should find out whether your Mum would qualify for continuing healthcare (all fees paid by the NHS). My o/h had Parkinsons and associated dementia and was granted CHC. If you have a Parkinsons Support Worker they should help you to access this or you could ring the helpline. I am sure they would advise you.

Good luck.

Thank you for your support. There is no Parkinson's support around here (Kingston upon Thames) other than possibly through Parkinson's UK - no support worker or dedicated nurse at Kingston hospital.
Mum is receiving the nursing allowance (£101 week) but assessed as not eligible for anything else. I am informed that Continuing Care can only be considered in this LA if the person is assessed as having around 6 months left to live - which is not the case here, as far as can be predicted - there are no underlying medical conditions (as if Parkinsons and LBD not enough).

I am informed that because the LA will only pay about £800 a week and her home is £4K plus a month, the best case scenario is that we would have to make up the shortfall of at least £300 a week which we cannot afford to do.

On one hand I suppose it is only fair. LA shouldn't have to pay for an expensive home. Unfortunately there isn't that much provision around here (e.g. there is only one local authority nursing home which is going to be closed and about 6 possible private homes that are not in the £1K a week bracket). If I hadn't been in such a state initially I wouldn't have arranged somewhere so expensive - also it has gone up twice since she moved in less than 2 years ago.

The new rules about contributions do not come in till next year earliest and as far as I can make it, will be very complex and not that much of an advantage.

I started to broach the move with her tonight. It was a toss up whether to talk to her or not. She is very concerned now and I know she will worry but I think it is better than springing it on her on the day, so to speak.

Thanks again for your support. If only the government would do more for all those who need care homes. It wouldn't cost that much to have a better advice and brokering system. The push is for more care at home but as I and many others know, that can only offer limited assistance and can be a worry in itself. Look at that poor woman who died a while ago because the carers just stopped coming round. Doesn't bear thinking about. It is all about economics so things unlikely to improve in near future.
Dear Choogler

I really would urge you to contact PUK via the helpline (top left hand side of this page) for advice.

Continuing healthcare is not paid by the Local Authority but by the NHS. Has your Mum had a recent assessment for CHC? You can find all the details of assessments and criteria on the NHS web site. Does your Mum have a Community Psychiatric Nurse? My husband's CPN gave us great support and helped with the CHC assessment.

I agree that the financial support system for care is very complicated and I do feel that the first response is usually 'No' so you have to fight for it. My only experience of the system is my husband's case but if you look at the criteria you will see that many areas are taken into account, such as behaviour, cognition, mobility, symptom control and continence. There are others but it does not just have to be an underlying medical condition.

If your Mum is settled where she is, moving her will almost certainly have a detrimental effect. Do please try the PUK helpline. I am sure they will help you to explore all the options.

Chin up.

W xx

The Choogler - don't give up. 

It's really important that people know that Continuing Healthcare (CHC) is not just for End of Life care; it's for any patient (regardless of their financial situation) who primarily has medical or nursing needs. If you meet the criteria - the NHS are legally bound to pay for the care - it does not come out of Social Services budget. The budget comes from the local CCG (Clinical Commissioning Group - the bodies that were previously called Primary Care Trust).

The first stage is to request that you have a CHC Checklist performed - they use this document

My father went through the checklist yesterday, passed - and the next stage now is for a full multidisciplinary assessment

Please visit for lots of very good advice, and lots of information on the two legal test cases (Caughlan Case & Grogan Case)

Also see this excellent article from the Guardian


The main official NHS site for this is

"NHS continuing healthcare can be provided in any setting, including a care home, hospice or the home of the person you look after. If someone in a care home gets NHS continuing healthcare, it will cover their care home fees, including the cost of accommodation, personal care and healthcare costs."

Don't be fobbed off by anybody who tells you that you won't succeed, or that it's not appropriate for you. Just request that it's carried out.


Good luck 

Hello folks,

I know that in this case this is not appropriate but something for everyone to think about is an Immediate Needs Policy, these are where you pay quite a lot say around £100000 and the insurance will pay your care fees for the rest of your life. There are a few company's that do this and if you have a house to sell you can take it out of that and the rest could be invested where ever you wish. I do know of someone who did this and he outlived the initial cost and was very pleased to be able to say it was well worth it.

Just a thought




I have now heard of three people who have been in a care home and have been asked to move as they can not care for them anymore, When is someone going to do something about this problem for PWP's