Anyone know about eligibility for NHS Continuing Care Assessments?

[PeterParkerSays]

MIL is going to need to move into a care home. She has long standing Parkinsons and is now getting problems with her memory. She's had 3 falls in 4 days and because the dosage of her meds have been increased, she now can't move as her legs freeze, making falls more likely.

SS have been in to do an assessment and have recommended she goes into a care home in the short term, for assessment, and then to a care home nearer her son (DH) or daughter (SiL) thereafter. MIL is in sheltered accommodation paid for with housing benefit, having moved there from a council house.

Her short term care, whilst she's assessed, is fine but longer term we've looked at the places that the council's £376 a week will get her and the CQC reports for them are awful -all of them have had follow up assessments because of failings - low staffing, damp, unsafe practise with medicines etc. Realistically she will be going into a home which charges a top-up fee as the no top-ups are grim. She can't pay the top-up though, as she has some savings so has to make some contribution to her care costs until they drop below £14k of assets. Which leaves top-up fees, SIL on a NMW job and DH with a mortgage and a family. We could be looking at £1k a month in top ups and we just don't have that sort of money. MiL would be happy to pay more out of her savings whilst they last. She's just in a limbo situation where is she had a couple of grand less she'd contribute nothing, so could use her savings to top up, and about 20K more in savings and she'd be paying the lot and chose wherever the hell she likes.

Looking online, I found out about the NHS Continuing Care Assessment, which, if successful, could pay her care fees for MiL. We've asked her Social Worker whether one will be done whilst she's in the short-stay care home, to be told that she's not eligible for a NHS CCA because she needs a care home not a nursing home i.e. she doesn't need nursing. From what I've seen online, you find out if you're eligible by getting a first-stage CCA done by medical or social services staff and seeing what the scores are, not by him arbitrarily deciding she's not eligible. This woman has parkinson's, very limited mobility / ability to stand, continence issues, some speech issues with her voice (PD related). I just think how bad do you have to be to be eligible for an assessment if she's not bad enough?

Apologies that this is so long, but does anyone know about NHS Continuing Care Assessments? Is it worth our time pushing for an assessment despite what the social worker says?

As you've already found out, there's an initial checklist, according to the The NHS CHoices website - perhaps your MIL's Social Worker might be referring to this? Maybe worth asking the SW if they've used the checklist, or if you could see a copy?

You've probably already found this leaflet about CHC funded care, and the main checklist which has the eligibility for CHC funding is also here.

Sorry - there's probably nothing here that you've not already found online - good luck

NHS Continuing Health Care only pays for Nursing needs.
My DD gets CHC (although they are re-assessing next week). YOu have to score HIGH or SEVERE in a number of categories to qualify for CHC - includng areas like breathing and behaviour. You will not qualify for CHC funding just because you cannot walk and are incontinent - those are care needs not nursing needs. The criteria is quite tough - and open to interpretation by the individual assessor. But my feeling is that if they think your MIL can be looked after in a Care home then she is unlikely to qualify.

An experienced social worker (or OT or CoE nurse) will be able to tell without needing to do an assessment whether your MIL would qualify for CHC. I'm an OT - what you've described definitely wouldn't qualify for CHC, I'm afraid. Falls, speech problems and incontinence can all be managed by a carer without nursing qualifications, therefore the NHS would not need to fund qualified nursing care to ensure she is looked after.

As an example, the kinds of Parkinson's patients that I have worked with that have qualified for CHC have severe swallowing problems, so are at risk of aspiration (i.e. inhaling food) and therefore risking pneumonia so need supervision by a qualified nurse during all meals; have severe cognitive/psychological problems meaning they are a danger to themselves or others; high-grade pressure sores that need regular qualified input; complete immobility (needing hoisting or completely bed-bound) plus something like a feeding tube; at the end stage of the disease and have been determined to have fewer than six weeks to live...you usually need at least two more more of the above for CHC to be an option.

Hi PPS. Does your MIL have little enough assets not to have to pay for care: ie is she not a home owner and does she have less than £23000?
I have managed to secure it CHC (for now) for my father who has Alzheimers and does not require nursing care. He has all day carers due to challenging behaviour and severe memory loss, and a few medical issues (nothing as debilitating as your MILs) which require medication to be given by carers. CHC is assessed against about 11 domains (cognition, behaviour, nutrition, mobility, breathing, skin integrity, medication etc) and you need to score severe needs in 2 domains to qualify. I was put off, incorrectly, from applying for a long time because Dad does not have much in the way of physical illness.I argued his illness results in behaviour being such that he cannot be left alone without putting himself and others at risk and so the NHS is paying for his care.
In summary, do not be put off applying. It is definitely worth having a careful read of the govt papers explaining CHC which are available online and comparing your MIL's health issues against the domains in the checklist. The checklist is the 1st step in the assessment, the decision support tool is the second.
The organisation Care to be Different has an excellent website which explains CHC and all the pitfalls people face in applying. The founder is a mumsnetter who has given me very valuable advice via email.

Thanks for mentioning Care To Be Different, whataboutbob. I hope the following sheds light on some of the points made above. There are many myths and misconceptions about Continuing Healthcare. Be aware that:

No one can say whether a person will or won't be eligible for Continuing Healthcare funding until the assessment process has been carried out and a full picture of need has been established - including risk.

Many people are told that to qualify you have to have a PEG feeding tube or be at the end of life or be completely immobile or be unable to swallow, etc etc. None of those specifics are true. They may be relevant, and they may contribute to the full picture of need, but please don't be put off if your relative doesn't display these specific things. Eligibility is about the whole picture of need - and it's also never about any specific diagnosis or diagnoses.

The qualifications of the person delivering the care are irrelevant! This is a vital point. The Pointon case (Malcolm Pointon/Barbara Pointon) established this. What matters are the actual care needs, NOT who delivers the care. It can be a husband or a wife, a carer or someone else - it does not have to be a nurse.

You do not have to be in a nursing home to qualify for Continuing Healthcare. You can be in any kind of care home, or you can be in your own home, or somewhere else. The care setting (i.e. where the care is delivered) is irrelevant.

There are two stages to the main assessment process: 1) The Checklist - this does not determine eligibility, instead it determines whether you go through to stage 2. 2) A full assessment by a multidisciplinary team (MDT) where a Decision Support Tool (form) is completed with input and evidence from all relevant health and social care professionals, and with input and involvement from the family. A separate Fast Track process is available for people in a period of rapid deterioration or at end of life. It's important to remember that a period of rapid deterioration does not necessarily have to be at the end of life stage. Many people are wrongly told that the Fast Track is for end of life care only. This is not true.

One of the most important factors in determining whether a person is eligible for Continuing Healthcare (and this gets ignored so often) is whether their care needs are beyond those for which a local authority can legally take responsibility for. This was reinforced in the Coughlan case at the Court of Appeal. If the care needs are beyond the scope of a local authority, they are by default the responsibility of the NHS to fund. This is why it's vital that a social worker or other representative from the local authority attends a full assessment MDT meeting. If a person is found not eligible for Continuing Healthcare and yet their needs are beyond the local authority's remit, the local authority will be acting illegally in taking responsibility/means testing, and the NHS will have been wrong in its conclusion that the person is ineligible for Continuing Healthcare.

I hope that helps.

Lots of good info above re eligibility.
one of the assumptions made re CHC is that if you have a certain diagnosis then you will be eligiblem this is not the case it depends on the assessed need.
another is that it will pay when you can not pay for the home you want, ie topup fees or above adult services rates, sgain this is not the case, if you are assessed as eligible then your fees will be paid, if you are not eligible then they wont. However there will still be a llimit on fees, snd CHC will still need to agree how much they will fund and where.
in the meantime it is really helpful if families keep a diary of needs and be very explicit in the care given, this will help as evidence.

Okay, will deal with Cont Care first.

But but but. FFS see if you can get Power of Attorney in Health and Welfare while she still has some marbles. If not, opt for Deputyship. Otherwise, someone else will OWN your relative. Believe me on this.

You have been moaning about bad care homes. Really? Well I have news for you. If your relative is in a death-trap nursing home and you want to move her back home cos you fear for her safety and frankly know better than the carers who are logging up a body count, get this. The home can rat on you to social services, who then have the right to send the police round and reinstate her in said death-trap nursing home, for the duration. True. Google Merok Park in Banstead for an idea of their speciality nursing homes.

Google your local social services to find out their reputation locally. Generally they thrive on being unaccountable as you have seen in the news lately.

Once your relative has dementia, they lack the capacity to grant you power or attorney in H + W so social services can step in and outrank you by law and decide what is in her 'best interests'. That actually translates as 'we will do what we want to do and can, flying in the face of your better knowledge.' And as dead residents do save the local council as small fortune, well, you figure it out.

Re Cont Care. Well, it's a money thing. Getting it is a mixed blessing as it implies that your relative won't last long. I mean, they don't just hand out money. Sure, there are exceptions. Often they will ask if the need your relative has is complex and unpredictable. Parkinson's is many things, but not frankly that unpredictable. Or complex. And it is hard to predict longevity. So they are loath to just grant it and hand out cash willy nilly.

But apply anyway. It's just, yes, you may get it if someone has a PEG but really that is something to avoid imo as doctors are keen on it - Northey Suite at Epsom District Hospital put the pressure on us to install a PEG and we somehow avoided it, and one year on our mum who has Parkinson's (advanced) still doesn't need it. They did actually arrange Cont Care for us, and I vaguely get the feeling they did this on the proviso that she'd be getting a PEG. I later heard that the prognosis ain't great if you have this inserted in the stomach. Okay for them, though - means the Cont Care is not open ended.

Some do go on Cont Care, improve and then get taken off it, which is fair enough so it is not always a death sentence, but it is often granted to terminal cases.

Can I ask, my mum has had an assessment today (despite being in close contact with the team no-one told me it was today when I specifically said I could be there) my mum says she was told she has to pay £181 per week for her continued care? She has pressure sores/needs hoisting/unable to walk or weight bear and has had carers 4 times a day for this for last 4 weeks wanting to stay in own home. No savings. I'm horrified and she is terrified

Reassuring post for the OP there ProfessorDent. Do you subscribe to the Daily Mail or just get it via the app

carrie Has she perhaps had joint funding between the NHS and social services agreed rather than full CHC? Or was CHC perhaps not approved? Either of those sound more likely to be the case if she's being asked to contribute towards the care. It should, in theory, be able to be covered by the carers and attendance allowances.

Professor Dent- while appreciating that you have had a bad experience with a care home, I am concerned about several of the aspects of your post.
Not all care homes are death traps and many people here are grappling with the difficult issue of not being able to meet their parents' needs at home, because they are overwhelmed in trying to meet them. Sure vigilance is needed, but not panic.
Continuing Health Care is not just awarded to those in terminal phase. The fast track where people are thought to have 3 months or less is only one of the possible ways of getting CHC. My Dad is definitely not terminal and he got it, for now.
I am an NHS dietitian and doctors are generally very wary of giving PEG s to those with dementia because it sets up a series of ethical difficulties for them. Furthermore having a PEG does not necessarily mean you are terminal. There are a whole range of reasons for having one. For some patients it is a temporary measure.
I do agree with you about the vital importance of getting POA wherever you can. If the OPs MIL has not yet granted it, it's something the family should strive hard to get.

CarrieLou if you are granted CHC ALL your care needs are paid by the local CCG (the body that decides how the NHSs' monies are spent in the area). I would suggest going back and getting more info. If your mum has no savings then it should be a case of deciding which organisation meets the costs of her care need. In your mum's case it may be the local authority but I'm not sure. is she currently in hospital? If she is ask to speak to the ward's discharge co ordinator. If there isn't one, to the hospital's discharge co-ordinator, or failing that to the ward's allocated social worker. It is vital you are given a good explanation of who will be organising, and paying for her care so that you have a point of contact to make sure her needs are met.

Have just re-read my post and I cannot fault any of it.

Sure, I know the Daily Mail has a well-deserved reputation as the Daily Hate. But on the other hand, it is the only newspaper that has gone to town exposing the shoddy mindset of nursing homes, and made it into a bit of a crusade. So good for them. If any other paper wants to do that, I'd sign up for them instead, but they haven't.

I had no intention of reassuring the OP. I was warning them. How I wish someone had done that with us when we started out.

As for doctors being reluctant to install a PEG, really? Not our experience at all, and my mother has Parkinson's dementia. How can installing a PEG be temporary? It is a tube inserted into the stomach via an operation, you take it to the grave.

I have explained that Continuing Care is a mixed blessing and does not always mean terminal. On the other hand, if there is negligence, do you have a leg to stand on? After all, if they've only been given a few months to live anyway?

Anyone want to explain to me how the evacuation of Merok Park, shut down because the CQC deemed it so appalling, at short notice on a cold November evening, following which two people die, can not lead to any kind of reprimand for the organisers, because it's beyond me.

Still, no need to panic.