Anyone with relevant medical experience give an estimate

[HermioneWeasley]

Ok, so I appreciate this is going to be difficult question to answer, but my mum is worried sick about care home fees for my dad and how many years she might have to fund.

he is likely in the near future to need nursing care at £2k a week and obviously there is a limit to how long she could fund that for.

he is 81. He has had one major stroke and a number of TIAs. He is type 2 diabetic on insulin. Double incontinence. He has vascular dementia- probably middle stage by now. Gets confused easily, can’t remember events. He has very limited mobility, likely to be bed bound soon. Whenever he is checked over his vitals are good, good heart, blood pressure etc.

i can’t imagine him living more than 3-5 years more like this, but as my mum says, there’s nothing wrong with his major organs.

so, can anyone with any experience of older patients give a view on typically how long he might have?

I know it sounds cold, but we need to plan financially if yes, realistically he could live another 10 years like that.

Not a medical expert (sorry) but you might want to look at this from the other end of the telescope. If your DF is in care then he is liable to pay while he singular - not your parents jointly - has assets to fund his care. So your DM will not end up homeless and on the breadline. Also, their home will not be sold to pay for his care: it will be protected as long as she is living there.

It might be worth them getting some financial advice on how to ensure clarity on what "his" share of the marital assets would be considered to be for paying for care, so that if "his" money runs out there is no quibbling.

Some homes will accept council funding for long-term residents who are at the end of their lives.

There is no telling what could happen to him - some people do really well in good care homes; lots of medical attention to pounce on any problems, regular food and hydration, falls avoidance, good socialisation.

Thanks @olderbutwiser

pretty much all of their assets are joint. I assume if he were to transfer them to her solely that would be a deprivation of assets? Or would they say 50% of the value is his and let her keep the other half?

While your mum is living in the joint house it will not be sold for his care.

there is a disregard.

https://www.carehome.co.uk/advice/do-i-have-to-sell-a-jointly-owned-property-to-pay-for-care-home-fees

It’s not her responsibility to pay for his care. Anything held jointly is split 50/50. It would be sensible to make sure her half is in an account in her own name.
The house can’t be sold to pay for care if she’s living in it.
Once his savings get down to a certain level he’d need a financial assessment and some funding should then come from SS until his own savings drop down again.
https://www.ageuk.org.uk/information-advice/care/paying-for-care/

As mentioned, anything in his name will be used, anything held jointly will be halved until it reaches £23,500 and then Social Services may pick up the costs.
In terms of how long for, the average life expectancy for anyone going into nursing home care is around 12 months but there is a huge variety within that average, from days to years.

When DF went into care we opened separate bank accounts for them and split all their money 50/50. Then a financial assessment was done based on DF only (if you have assets/money over £23,500 you are self funding until it goes below that number, at which time you pay a ‘contribution’ which is effectively all your income less about £30 pw.As PPs have said the house is not included while DM was living there - after she died however it was and then it was back to self funding and they are putting a charge on the house.

…. DF is very poorly, but has been in a care home for nearly 4 years

If he is very poorly you could ask for a continuing health care (CHC) assessment, it is really hard to access but if he can’t care for himself due to his dementia, he may meet criteria.

It could be that with his high level of care needs he might qualify for continuing health care funding via the NHS. Check out beaconchc.co.uk.
The funding comes from the NHS and is not means tested. It applies to care both at home and in a nursing home.
My late OH had this funding ... but I had to appeal as it was turned down initially.
It us worth looking it all up in advance.

Thanks everyone for your input and advice.

In my experience nursing home care does seem to extend people’s lives - they’re not doing anything at all risky or effortful and get regular meds, meals etc. My Mil lasted 5 long years, my mum has done 4 years so far. The average is supposed to be a lot shorter but that must be skewed by people who are at end of life?

Get onto Social Services if you haven't already. We eventually did after years of Fil caring for Mil and they've been really good, especially at assessing and explaining stuff.

It sounds like he has high care needs rather than a nursing need so don't bank on CHC funding. MIL was left paralysed, incontinent and non verbal after a stroke but her condition was stable so no CHC. When FIL had cancer the ride effects from the only painkillers he could tolerate, and I use that word VERY loosely, meant his diabetes became very unstable with multiple hospital admissions and twice daily district nurse visits so he got CHC.

Thanks all for your input

Then you were badly advised. Having a condition that is "stable" does not preclude CHC funding and an appeal should have been lodged. There is nothing in the CHC rules that says that a stable condition does not qualify - it is purely based on needs.

This is why I am advising the OP to take advice from BeaconCHC so she goes into it with full knowledge of the facts, because she will rapidly find that in fact the HCPs know zilch about it and just make stuff up. Honestly - I kid you not. It is not surprising as the conditions are very strict and detailed - and they are busy treating patients, quite rightly.

There are every year thousands of people who qualify and do not get it. And the NHS is happy to keep it that way because it saves them money.

I had both professional and personal experience of all this and got it for my OH on appeal simply because I knew what I was doing. I want the OP to know what she is doing - knowledge is power.

The simple fact is that if everyone who qualified was granted this funding the NHS would collapse, which is an argument for changing the law/rules but not for the fudging and lies that we have now.

Well it didn't make any difference to us as she was LA funded but I'm pretty sure they would know when they could get someone else to pay. CHC requires nursing decision making.

I wish it were as simple as that. Unfortunately it is not. It is not a nursing decision. Nurses who know the patient well do have some input but they are bound by the very tight conditions and often bung in ticks in boxes without knowing how that form is assessed. Something that I knew.

My late OH was turned down twice. On both occasions the LA rep present had gone along with it as they did not know him but were just drafted in to sit in on the meeting. They just believed everything they were told.

When I launched the appeal, the person allocated to talk with me about it from the regional health authority said straight away that he should never have been turned down, let alone twice. She helped me with the appeal as she could see that it was justified. When the appeal happened (by zoom) I was phoned back straight away with the result.

How many people would have had the knowledge or tenacity to appeal after 2 rejections? I could do it as I knew exactly what I was doing.

This again is why the OP needs knowledge before embarking on this.

This is happening every day.

Relatives are spoken to in hospital or at home by a nurse who has ticked the boxes of the preliminary form and told that their loved one does not qualify and there is no point in taking it further - this by someone who does not know the ins and outs of the system and is simply a nurse trying to get on with the job for which they do have the right knowledge. So there are thousands who never get past that stage because they believe what they are told by someone who does not know what they are talking about because it is not their area of expertise.

I see it amongst friends and am able to point them in the right direction.

One thing that people are confused about is that they think it is only for people who are terminally ill. That is not the case. There is a fast track option for the terminally ill, but that is entirely aside from the main process which applies to anyone who meets the criteria.

I didn't mean nurses make the decisions, but the patients condition needs nursing decisions on a frequent basis. If it's social/personal care that's needed but not healthy care it's outside CHC. A lot of people think if someone needs everything doing for them CHC might apply but it's only if they need health care not washing, feeding etc.

The categories on which it is assessed are very detailed. The social/nursing care interface is complex and this is why they have tried to pin it down in such detail.
Most people have both social care and medical needs and often the person doing the initial assessment confuses the two.
There are also some slightly more subtle aspects that are to do with cognitive and mental health factors that are often underestimated, and the interaction between these two.
It needs specialist advice rather than taking the word of a ward or district nurse for whom it is a sideline in their daily work.

I refused to fill in the financial assessment from the LA because it implied that CHC was off the table.

Thanks @Mischance

i had been wondering whether he might qualify for this.

I doubt he would be able to transfer money to her, he has vascular dementia, poor memory and is confused, no solicitor or bank would agree to this. Where is he at the moment, does anyone have power of attorney, has he had a capacity assessment.

I am a nurse working in a care home. CHC is very precise and sadly doesn’t cover many residents needs. A resident would require very specific needs that only a registered nurse can make decisions about. It is an absolute minefield and I have been very surprised about how many residents have been rejected for CHC .

@Weeee can you share examples of conditions which have qualified? Thanks

You can Google the chc checklist,it's awarded for complex nursing needs like artifical feeding, oxygen therapy, severe behaviour, end of life care, it's not about specific conditions,it's based on the person's needs and the care that only registered nurses carry out.

https://assets.publishing.service.gov.uk/media/630399dae90e0729db4b59f9/NHS-Continuing-Healthcare-Checklist-guidance-2022.pdf

Above is the basic checklist that gets the process started - it is important to really give thought to each category - it is tempting to just say someone can do something but if you go it into detail and ask yourself questions (e.g. can they do this completely on their own, do they need prompting, and most importantly could they do it or would they realise they had to do it if no-one was there?).

Take a look at the checklist then ring Beacon to go through it with you, having thought about it in detail. They are state funded to help people with this - you are entitled to a set period of advice for free - which is why it is good to have all your ducks in a row first so that time can be used well. A charge only comes into it if they provide you with legal help to appeal for instance.

It is very important to think about the mental and cognitive aspects. One of the reasons my OH was awarded it (posthumously on appeal) was because of the interplay of these elements on top of his physical limitations. As well as being unable to walk, transfer, eat without help etc. and being very high risk for pressure sores due to massive weight loss, he was delusional, paranoid and his behaviour towards people was inappropriate at times. It was the combination of all these factors that qualified him.