Has anyone been successful in obtaining NHS funded 'continuing care' for their elderly parent?

[oliviaaah]

We have just been turned down and are wondering how to proceed.

I think you can appeal. But the cards are stacked against the families IMO.

OUr experience was this:

my DGM (Mother's mother) had dementia. GOt steadily worse over 5 years. Was cared for at home, but prone to repeated UTIs and so on.

Had massive UTI which sent her into hospital. At the time, was completely incoherent. Stopped eating and then stopped drinking. Was dying (she was 93). Immobile. No drip.

At the point where she had not eaten for 10 days and had had nothing to drink for 4, the hospital declared that she should be moved into a care home (forgotten the acronym, but a dementia care home). OUr take on it was that she was dying and had ongoing medical needs. Social services and NHS had a spat - to-ing and fro-ing. She lost the continuing care case because according to them she didn't need CC. At this point (a Thursday) we were told by SS to organise a care home for her so she could be transferred next day (this is wrong - spoke to Age Concern, and the SS should have been at least assisting us, but preferably sourcing such care).

We appealed. She died on the Friday. At which point she had been well over a week without fluid and much longer without food, and at the time she was having her case refused, she was entering into the final stages of dying - breathing changing, confusion, so on). She was out of it, but distressed, and the fantastic doc gave her morphine.

She won the appeal on the Monday after she died.

Bitter? Yes - I think that the care of our elderly is shocking. What my mother went through in the last week was bad enough, watching her die, having had 5 years of the dementia, but the money wrangling by the NHS bureaucrats and SS just made everything worse.

The nurses and doctors were fantastic and every experience I have had with the NHS and my young children has been amazing. But what happened to my Granny was just not good enough and was downright cruel given her age and her frailty.

On the other hand, my Step grandmother has NHS continuing care. She hasn't got dementia but has a specific medical need (not sure what and Step mother on holiday so can't ask her - is psychological though, rather than physiological). Has been in an NHS home for nearly 4 years. Is in early 80s.

There are specific criteria needed to get continuing care, there is more information here

Do you feel that your parent meets the criteria?

Have you had a look at the paperwork the NHS have sent you to see where your relative has scored in the various domains - do they have any critical or severe scorings etc ect?

There are a couple of online forums where you may be able to get help.. trying Googling "forum free nursing home care"..

From my own research and experience of the subject you will probably be for a long slog.... we started this process nearly 4/5 years ago and still have not managed to get funding..

Good Luck.

Thank you very much for your replies. I haven't yet seen their letter turning us down. I should be seeing it tomorrow. Pooka, yours is a horrendous story and sadly all too common. I hope getting it down on here helps in some small way. I certainly feel like I need a hand to hold through what I think is going to be a rough time...

Hi, I took advice and got help from a company called Cheselden Continuing Care, who specialise in helping with NHS funding. If you google them they should come up.

I have personal experience of obtaining Continuing Care (fully-funded NHS care) for both of my parents. It was a hard battle, but if your parent is in care primarily because of health needs, you have a good case.

You're right that the NHS and Social Services have different agendas and families can get stuck in the middle. It's a crazy situation - and the various agendas are always motivated by money somewhere along the line.

Tip: If your parent/relative is currently in hospital and needs to go into a care home, the NHS will be keen to get them out ASAP and will put pressure on Social Services to do so. However, neither the NHS nor Social Services can legally discharge your relative before a full assessment for Continuing Care has been carried out, according to the legal guidelines, AND you have been given every chance to appeal any decision to deny funding.

Tip: If your relative is already in a care home and paying care fees, and yet their primary needs are health needs, they should be assessed for Continuing Care. This should have been done within 3 months of them first going into care. Very often it's not though. You can ask for an assessment for Continuing Care - and you can request that it be done using the 'Decision Support Tool'. This is the full assessment. Make sure you attend this assessment, as you'll need to put forward as much evidence as you can to show what your relative's health needs are. Sadly, unless you (or another family member) do attend to fight your relative's corner, you're unlikley to secure the funding, as the whole process is such a shambles.

It's worth pursuing Continuing Care though. Very often you discover that the NHS and Social Services are acting illegally and they don't have a leg to stand on. As many families discover, the various authorities do seem to make the whole process as difficult as possible, but they cannot continue to break the law once this has been exposed.

I hope it's OK to post this link here: www.caretobedifferent.co.uk - you'll find lots more information on the site. It's my own site, and I now help families fight for Continuing Care.

Hope that helps for the moment.

Angela

hi Angela, just to say your website is excellent! I ended up ringing CareAware UK who were amazing and so knowledgable. I have the other thread re: joint property ownership. Despite being completely paralysed down her left side Mum does not qualify for continuing care.

I might just have to invest in your book!

I have been dealing with Cheselden Continuing Care [ in respect of my mother's claim for nursing home fees after she passed away in 2008] for the past three years. I have spent time and money over the years fulfilling their requests for information and obtaining deed of probate etc. Last month I was informed that we were almost there and I could expect to have my claim accepted [or refused] within the next three months. I was told that here was a deadline by which everything had to be completed before it was too late to claim. Then....... suddenly on 2nd. April I received a letter from Cheselden saying that they were closing down he business and if I wanted to continue my claim with another organisation they would send me all the documentation and records of everything they had regarding my mother's case. Even though I requested these documents I have never heard from Cheselden. So all my time and searching and money has been for nothing.

'Continuing Care' is a bit of NHS doublespeak, imo. They give it if they think it won't be 'continuing' for very much longer, i.e. terminal cases and so on.

It's about the money, so whether you get it or not depends on whether your local authority/county is in the red or not, it seems to me.

And with that in mind, you might want to ever so discretely ask yourself whether the care home, which only ever work in conjunction with the local council I'll have you know, and their Social Services, will be doing all they can to keep you relative alive should they be on Continuing Care. Not such a massive problem if we are talking terminal, but if it's in the balance, well, you might want to look at that. Otherwise it just might be a case of 'We're gonna finish off your rellie now, here's some money so you don't feel too bad about it.'

Needs have to be 'unpredictable' so shouting and carrying on, noisy dementia, etc might work in winning CC.

No.
My relative was blind, wheelchair bound and had an indwelling catheter.
He was deemed not to require any nursing care and not to have any needs that would qualify for financial support with care. He was self funding so paying roughly a third more than the state pays for non self funders in the same care home.

I don't know anyone who has been able to get continuing care funding.

My mum died from starvation and neglect in a busy ward.
She was denied a hospice bed because she was "likely to live too long".
She died 2 days later just after they agreed to allow her to have one.

I will never forgive them.

We got CHC. Funding for mum when she came home to die. The end of life team at the hospital were really good. It was done in 2 days and she was home 2 days after. She died 3 days later.

Finding a care agency to provide 24hr care was tricky though . They were nice people but no end of life training. Had she lasted longer they would have been fine but try hadn't ever done mouth care for instance.

At the time I was cross. But actually I have end of life care experience through work so it was ok. She wouldn't have got home without the carers in place so I can't be cross now.

Dad died recently in a care home. We were part way through Chc assessment. They were really good at the home.

I have also secured CHC funding for my dad. It is possible if you are well informed and organised and above all if your relative fulfills the criteria. And possibly too if you are lucky with the assessors on the day. There's lots of information out there (talking point on Alzhemiers Soc website, the organisation Care to be Different, and the governement guidelines are downloadable form the internet). I'm always happy to give advice on these boards too for those who are considering the process.

We got it for my dm, she had cancer and they mucked about for so long that by the time they were to start her treatment she was too ill.
We didn't apply for it, they wanted her out of the hospital and she lived on her own, we all work. I think they thought she would die in a few weeks. She lived a year, we stayed overnight after work and she finally died at home

My father is in hospital with pneumonia. He has Parkinson's and dementia. He also has a problem with his oesophagus which is the cause of the pneumonia as he aspirated. Last week he had an endoscopy to investigate the oesophagus- he aspirated again and nearly lost him. He's been in ICU all weekend on CPaP they won't ventilate due to age/prognosis. Today his breathing is better and hpjust on normal oxygen. They are looking to put a PEG in to feed him. My mum is desperate to get him home. Should I push for fast track assessment for continuing care?

You can, but I would concentrate on the PEG op really. If he can't swallow much, that is going to be important. You might get the hospital to fast track it but whether he gets it is down to the money and the attitude the local authority takes towards dolling out cash.

My mother had a PEG, it does buy you time.

Hello tinkerbell, fast track CHC is only likely to be granted if prognosis is thought to be 3 months or less. Even if his prognosis is thought to be longer it sounds that he has enough health needs to be considered for ongoing CHC. I managed to get it for my Dad who had dementia. Post again if you have any questions.

think that the care of our elderly is shocking
Me too.

I work in care home admissions and we have a lot of luck with people appealling using a local independent social worker who specialises in it.

Minimum " she had cancer and they mucked about for so long that by the time they were to start treatment it was to late" . I work in a hospital and it's something I see too. Especially if the person does not have relatives to bang on the table and demand action.

I'm just bumping this thread, as I'm starting to look at how applying for Continuing Care works for my mum who has Alzheimer's. I found this, so thought I'd share as I've found it useful. A friend who has managed to secure funding for his mother said he things you need to score 'A' grade on 3/4 of the sections. I was wondering if anyone could confirm that or has any more detail on it? NHS Continuing Care Guidelines/ Checklist

When i applied for my dad about 3 years ago you needed to score severe in 2 domains. There are about 9 domains.
In dementia I believe that behavioural problems (aggression, severe wandering) are the most likely way to obtain CHC, by scoring severe on behaviour (assuming cognition will also score severe). But if other significant problems are present eg complex medical needs needing skilled and variable application of medicines eg anti convulsants/ insulin that would also score highly.
If you look at Talking Point, the Alzheimer's Soc forum, they have a dedicated thread on this with lots of useful info. Care to be Different also has an excellent website with lots of useful info.