continuing care fees and costs

[katek]

If I needed a CH in such circumstances, the thought of what would happen to my assets would be the least of my concerns. And if I had a spouse, the house would be disregarded.



My mum self-funded from a pot of £220K and modest pensions for eight years. There was a decent amount left at the end as my inheritance. Thanks Mum and Dad



LOL at the suggesting that care homes do not vary hugely. Someone must end up in the horrible ones - and I'm betting it's not the self funder.



I wouldn't want to go in later than needed. Read some of the cases on TP and see how often that happens when social services are involved in the decision



CHC and LA funding are two completely different issues.



Oh well, I guess we'll have to agree to disagree then

My post #78 shows how paying more for something is not necessarily better.

I know that LA funding is different from CHC but you just said at the mercy of the 'state'. Would you prefer to self fund rather than receive either of these forms of state funding - LA or NHS?

 

[Chemmy]

My post #78 shows how paying more for something is not necessarily better.

I know that LA funding is different from CHC but you just said at the mercy of the 'state'. Would you prefer to self fund rather than receive either of these forms of state funding - LA or NHS?

If my medical condition were such that I needed CHC, I would expect it to be provided by the NHS and to be honest, if I was that ill, I doubt if money matters would be of much concern by then. I certainly would not be likely to have much need of my assets.


Assuming I am not so incapacitated that I qualify for CHC, then I am happy to self fund if it means my children (and your children) are not paying extra taxes to pay for my social care. I want my children to choose the CH they think is the most suitable for me, not the one the LA insists I have to go in.

I don't disagree that in an ideal world that what you suggest would be good, but there is no magic money tree, so the costs to the next generations would be astronomical. I don't see any point in getting myself (and others) wound up about the 'unfairness' when we know the solution you are proposing is something that's never going to happen

 

[katek]

If I needed a CH in such circumstances, the thought of what would happen to my assets would be the least of my concerns. And if I had a spouse, the house would be disregarded.



My mum self-funded from a pot of £220K and modest pensions for eight years. There was a decent amount left at the end as my inheritance. Thanks Mum and Dad



LOL at the suggestion that care homes do not vary hugely. Someone must end up in the horrible ones - and I'm betting it's not the self funder.



I wouldn't want to go in later than needed. Read some of the cases on TP and see how often that happens when social services are involved in the decision



CHC and LA funding are two completely different issues.



Oh well, I guess we'll have to agree to disagree then Can I just add, I am pleased your father is receiving CHC, but his problems are probably much more serious than most who move into a CH, otherwise he would not have been awarded CHC.

Our posts are overlapping!

I take your point about problems being serious enough to warrant CHC, but the fact remains that many people are wronglydenied CHC (because of the financial limitations of the NHS which we've been discussing) and are then forced to pay for care when it is actually of a level which shouldbe NHS funded according to the Coughlan judgement. In another post I told about how my late sister unfortunately fell into this category, and there are other forums where people tell a similar tale. That is what is so wrong.

 

[Chemmy]

Our posts are overlapping!

I take your point about problems being serious enough to warrant CHC, but the fact remains that many people are wronglydenied CHC (because of the financial limitations of the NHS which we've been discussing) and are then forced to pay for care when it is actually of a level which shouldbe NHS funded according to the Coughlan judgement. In another post I told about how my late sister unfortunately fell into this category, and there are other forums where people tell a similar tale. That is what is so wrong.

I thought we were discussing self-funding and inheritance, not the ins and out of CHC

Maybe it's time to call it a day as this argument invariably leads nowhere.

 

[katek]

Chemmy

Depending on the illness, people will need an increasing amount of what we call 'social care' as it progresses - whether or not other more 'medical' treatments (e.g. drugs/surgery/chemo) are available alongside it. I think what people are trying to say is that because for people AD the majority of their care is 'social' they lose out even more than people who are eventually charged (equally wrongly) for this.

Whatever the illness, nobody should be charged when an illness is at the level that they are totally dependant 24 hours a day. As Lord Woolf made clear in the Coughlan judgement, when this care arises from an illness, it includes the so-called 'social care', as it did with Pamela Coughlan. When you are in hospital, you are not charged for a bed bath or being helped to use a bedpan! That 'social' need is temporary, so why should you be charged if it is permanent?!

My late sister had advanced MS which also included significant cognitive impairment. At one stage she was having carers coming in 4 times a day to help her, and this level of care carries a charge. When her limited mobility decreased significantly, it led to a month long hospital stay followed by 4 months in an NHS neuro-rehab unit.
All her care there was obviously free, but apart from a little physio and occupational therapy, it was all personal care -simply washing, dressing, feeding, continence care etc - as there was no drug or other treatment availalable.

Because she was obviously unable to live her life in a hospital, she was eventually assessed for discharge to a nursing home, as living at home with 4 care visits would not be sufficient. She needed 24-hour care. Despite that fact, she failed to qualify for CHC meaning that she would now be paying for identical care to what she was receiving in hospital!

The problem is basically lack of funding available for anyone with a long-term incurable illness including Alzheimers, when treatment other than care is not possible.

Chemmy

My sister went on to become much worse including being fed by PEG tube, and still did not qualify for CHC. She was then funded by LA as she had no assets but could have paid out hundreds of thousands of pounds if she had. She would rather have left some money to her teenage daughter than that.

 

[katek]

I thought we were discussing self-funding and inheritance, not the ins and out of CHC

Maybe it's time to call it a day as this argument invariably leads nowhere.

But the two are related - if CHC is not awarded when it should be - as is too often the case - the result is that the patient will have to self fund if they have the assets. They thereby end up paying for healthcare (as they would in a country without an NHS) even though they have paid into the NHS as well. Paying twice over and having to use their savings to do so.

But, as you said, I don't think we'll ever agree on this!

 

[Pickles53]

I think the divergence of views on this thread does show that even among those who have personal experience of a relative with dementia (and indeed other serious illnesses like MS) there would not be a consensus about increasing taxation or NI specifically to fund adult social care free at the point of use for all. That doesn't mean it should be ruled out, but it would be very contentious.

So I'm not holding my breath for any significant change beyond the implementation of whatever financial limits there are on contributions under the new Care Act.

 

[katek]

LOL at the suggestion that care homes do not vary hugely. Someone must end up in the horrible ones - and I'm betting it's not the self funder.
.[/QUOTE]


Just to reply to this in a general way to anyone looking for a care home.

No-one should go to a 'horrible' (whatever was meant by that) home whether they are paying or not. Homes do vary according to age/decor/facilities such as a nice garden etc BUT all Homes are inspected by the CQC and have to meet their standards re staffing/cleanliness etc. Their reports are publicly available. That said, you should not rely solely on the CQC report. You need to go to the home and talk to staff/patients/relatives. Nothing beats getting a feel of the place, and whether it meets the particular needs of the patient.

If by 'horrible' the poster meant a bit shabby round the edges, that may not matter as long as the care is good. Someone who is ill may not mind about decor anyway. Having no garden might be irrelevant if the patient wouldn't be able to appreciate it anyway - self funding or not.

If by 'horrible' it is maltreatment of any kind, that is of course unacceptable and should be reported. Homes which appear good on the surface are no guarantee that this could not happen.

Re self funding versus LA funded, there are not completely separate homes as in the way that there are separate state and private schools for example. Homes are mainly privately run anyway, and while they prefer self funders as they can charge them more, the reality is that most have to accept LA funded patients as well or they would not survive. The result is that most homes have a mixture of self-funders and LA funded patients (so to use the analogy of schools again, it is more akin to when a pupil gets a scholarship to a private school but does not pay).

So, being LA funded does not necessarily mean you have no choice at all, just a bit less than you might if you were self funding. But that does not mean you have to accept a home which is sub-standard in any way.

 

[katek]

I think the divergence of views on this thread does show that even among those who have personal experience of a relative with dementia (and indeed other serious illnesses like MS) there would not be a consensus about increasing taxation or NI specifically to fund adult social care free at the point of use for all. That doesn't mean it should be ruled out, but it would be very contentious.

So I'm not holding my breath for any significant change beyond the implementation of whatever financial limits there are on contributions under the new Care Act.

My bolding of your post, Pickles.

I think you, and others, may have misunderstood so I just wanted to make clear for the record, that when I raised the idea of a possible increase in NI, it would not be for all adult social care! It would be used only for those in nursing homes - NOT residential homes or having LA support at home, as that would still rightly come under social services remit, and paid for by those who can afford it.

I was thinking about situations when, usually after a hospital stay, someone is told their only option is nursing home care. They then have to pay dearly (even though they have no choice in the matter) with the £109 nursing care contribution not making much difference.

(I personally would prefer complete reform of CHC, with nobody outside hospital getting everything free - but too lengthy to go into here. However, as you say, significant change is highly unlikely anyway).

Thanks for your interest in the discussion anyway!

 

[LYN T]

My bolding of your post, Pickles.

I think you, and others, may have misunderstood so I just wanted to make clear for the record, that when I raised the idea of a possible increase in NI, it would not be for all adult social care! It would be used only for those in nursing homes - NOT residential homes or having LA support at home, as that would still rightly come under social services remit, and paid for by those who can afford it.

I was thinking about situations when, usually after a hospital stay, someone is told their only option is nursing home care. They then have to pay dearly (even though they have no choice in the matter) with the £109 nursing care contribution not making much difference.

(I personally would prefer complete reform of CHC, with nobody outside hospital getting everything free - but too lengthy to go into here. However, as you say, significant change is highly unlikely anyway).

Thanks for your interest in the discussion anyway!

I'm not sure about your point re nursing homes. My Husband was in a CH and his care was free as he was entitled to CHC Funding. Are you saying that CHC, or any other way of free funding, shouldn't be awarded to people in CH's or those who qualify for funding and live in their own homes? That seems a step back in time; it used to be that CHC Funding was only awarded to people in NH's but that changed. Maybe I've misunderstood your comments.

 

[katek]

I'm not sure about your point re nursing homes. My Husband was in a CH and his care was free as he was entitled to CHC Funding. Are you saying that CHC, or any other way of free funding, shouldn't be awarded to people in CH's or those who qualify for funding and live in their own homes? That seems a step back in time; it used to be that CHC Funding was only awarded to people in NH's but that changed. Maybe I've misunderstood your comments.

Good point Lyn.

I know that CHC is available 'in any setting' but I've never quite understood how that might work in practice. Obviously I don't know your husband's circumstances or how he scored, but if you look at the criteria for 'priority' or even 'severe' they are of a level which would need nursing input.

To give an example, my sister was fed by PEG tube (needing some nursing for this), and in the 'Nutrition' domain this only counts as 'high', which didn't count for much. To get a 'severe' you would need to be fed intravenously, which is definitely a nursing matter. Not only that, you would need to be severe in another domain to get the CHC, which makes me wonder how a residential home could cope.

(Incidentally, if you google Luke Clements, it is enlightening to read his damning criticism of the way CHC is determined, from a lawyer's point of view)

Re funding, I think the problem lies with the different types of people who need CHC, and the ensuing costs. People at end of life, need pretty intense, but relatively short term care, and there is usually not a problem obtaining this. Where the NHS are much more reluctant to award it, is for long term care, because of the potential massive cost over the years. My sister was only 50 so could have needed it for 20+ years. (Pamela Coughlan has been getting it even longer!).

That is why I think we should make a distinction between these two different needs for CHC, and think it is reasonable to recognise that when people are living long-term with a high level of needs, they actually pay something for their food, utilities etc, as they would if they were well and living their life anyway.

To return to your question, I am not in any way denying that someone like your husband should get CHC if he happened to be in a residential home and they could somehow manage it. The difference would be that under my system, he - and everyone else getting it long-term, wherever - would pay a contribution to food etc of a level not dissimilar to what they would be paying at home. This would save the NHS money, and together with the enhanced NI contribution, allow more people to qualify than at present.

The result would be more people getting care paid for, and just paying 'living expenses' as opposed to the current situation. That is very few getting CHC long-term - and paying nothing at all, and very many not getting it when they should paying £1,000 a week.

 

[Pickles53]

My bolding of your post, Pickles.

I think you, and others, may have misunderstood so I just wanted to make clear for the record, that when I raised the idea of a possible increase in NI, it would not be for all adult social care! It would be used only for those in nursing homes - NOT residential homes or having LA support at home, as that would still rightly come under social services remit, and paid for by those who can afford it.

I was thinking about situations when, usually after a hospital stay, someone is told their only option is nursing home care. They then have to pay dearly (even though they have no choice in the matter) with the £109 nursing care contribution not making much difference.

(I personally would prefer complete reform of CHC, with nobody outside hospital getting everything free - but too lengthy to go into here. However, as you say, significant change is highly unlikely anyway).

Thanks for your interest in the discussion anyway!

Katek thanks for your clarification. I do see what you mean about the narrower interpretation of what you would like to see included. As with most sets of rules/criteria, defining what is included/excluded is a real challenge and nobody seems willing to grasp the nettle.

 

[LYN T]

Good point Lyn.

I know that CHC is available 'in any setting' but I've never quite understood how that might work in practice. Obviously I don't know your husband's circumstances or how he scored, but if you look at the criteria for 'priority' or even 'severe' they are of a level which would need nursing input.
.

My Husband had 2 severe behaviour/cognition, 3 high and 3 moderates 2 lows and 2 no needs. His behaviour/cognition was skillfully managed by very talented Carers at his CH. My Husband was plagued with infections and those were managed by the District Nurse/GP. He also had a huge weight loss and the Nutritionist and District Nurse kept an eye on his 'weigh ins'. So, even though Pete was in a CH, he received the best emotional/physical care he could receive from anyone-CH or NH. I doubt he would have been better looked after anywhere-including a Nursing Home. Both the Ch and I fought to keep him there as the local MHT liked to interfere and tried to move him-long story. I argued his care was exemplary and 'won'

 

[katek]

Katek thanks for your clarification. I do see what you mean about the narrower interpretation of what you would like to see included. As with most sets of rules/criteria, defining what is included/excluded is a real challenge and nobody seems willing to grasp the nettle.

It wouldn't be any narrower than now in as much as people who are genuinely below the qualifying bar for CHC would still not qualify. That is based on the the original 1948 Act and the 1999 Coughlan judgement on the boundary between what is actually social services responsibilty, and what is that of the NHS, by law. People with relatively low needs can legitimately be supported by social services, and therefore means tested.

It would in fact actually widen - in practice - the number of people who get NHS CHC. At present, too many people who fit the Coughlan interpretation are actually deemed not high enough to qualify by the CHC panels. Cost must play a large part in this refusal. I have since written a post regarding this, and how a reform of the whole system could allow many who currently fail (wrongly) to be able to qualify as they should, - which of course includes many people with advanced AD.

 

[katek]

My Husband had 2 severe behaviour/cognition, 3 high and 3 moderates 2 lows and 2 no needs. His behaviour/cognition was skillfully managed by very talented Carers at his CH. My Husband was plagued with infections and those were managed by the District Nurse/GP. He also had a huge weight loss and the Nutritionist and District Nurse kept an eye on his 'weigh ins'. So, even though Pete was in a CH, he received the best emotional/physical care he could receive from anyone-CH or NH. I doubt he would have been better looked after anywhere-including a Nursing Home. Both the Ch and I fought to keep him there as the local MHT liked to interfere and tried to move him-long story. I argued his care was exemplary and 'won'

Thanks for your reply, Lyn.

Your husband was correctly awarded CHC, and fortunately the CH were able to manage him. If as you say, that was also your preference, it is great that you managed to keep him there. The guidelines actually say 'in any setting' so I don't really see why the MHT team were so keen to move him - probably just to protect their own backs should anything have happened.

It sounds like a lovely Care Home, but I would say that the majority of residential homes would not be able to cope with someone like that. My father was in the dementia wing of a residential home (self funding after narrowly missing CHC) and they eventually couldn't cope with him. After an emergency sectioning, followed by 10 months in an assessment unit, he then scored very similarly to your husband and got CHC. In his case (he is also sectioned) they say there is no way a NH, let alone a CH, could cope, and he is now in a lovely NHS unit, with a ratio of 1 staff member (including mental health nurses) to 3 patients.

I guess it just comes down to how each individual can be managed and that is what counts. The real tragedy is when lack of funding causes lack of the right support.

 

[katek]

My Husband had 2 severe behaviour/cognition, 3 high and 3 moderates 2 lows and 2 no needs. :

Lyn

Just a question on this, as I am interested in how people who have had experience of CHC assessments view the whole process.

- Was that it hard fought to get that scoring? (I.E. did they try to argue that, say, his behaviour for example, was only 'high' rather than 'severe' before agreeing to 'severe' ?

- If he had only scored 'high' for behaviour', (but you considered it 'severe') and not got the CHC, would you have
a) appealed? OR
b) accepted it and the fact that he would have to self-fund?

With this level of needs, the very fine line between qualifying or not has huge financial repercussions for the patient.

 

[LYN T]

I have posted on a couple of other threads that Pete went to a CH after being sectioned in a MHU; he was sectioned 5 times all together over 8 1/2 years. When he left the MHU he was given a checklist and failed to win funding. When I received the paperwork they had done the checklist on two patients; 1/2 of it on my Pete and half of it on another gentleman named Peter A. Of course I was furious especially as I was told in no uncertain terms that I couldn't look after my OH at home due to his violence/high needs. So I appealed and another checklist was completed. He received enough 'points' for the assessment which was done over a cup of tea with the CH manager, myself and the CHC person. The SW was invited but failed to appear. Pete was awarded CHC funding within the hour without it going to panel.

After 9 months he was given a three month review which was completed by two ladies who were much more stern-more like bad cop/nice cop. I never considered that it would be withdrawn at that time as he had deteriorated further-with another section and inout from the local MHU. The scores were even higher than the ones I had given in my previous post.

So, even though I did sort of appeal after the first error ridden checklist (with the mixed up patients) I never had to consider it after the CHC was awarded.

I do think it is right to appeal-but who has the energy? It's a soul destroying business and so much depends on the records kept by CH/NH's etc. I was lucky in that respect as Pete's CH kept extremely detailed records-which I read on a regular basis.

 

[katek]

Lyn

I agree about the amount of energy involved in appealing, and that is even worse if it is as a result of the ineptitude of the CHC team that you describe. I wonder what the cost of these endless panels etc must mount up to? Money which surely could be better spent on patient care.

 

[Wirralson]

If the state are funding elderly care 'at some point', which is what they're doing now, as Wirralson has said in the past at some point, it's a drop in the ocean to the NHS. Even smaller a drop are the private contributions stolen from those with savings over £24k. Rest assured, it is not the very wealthy who are being penalised here. Those with more money can easily afford to protect their assets from the public purse. As it stands in law now, the NHS is acting contrary to the law with its guidelines on CHC funding. Lawyers say so. It's up to the individual to challenge that. It's not hard to find current legal precedent.

I think you're very slightly misquoting me on the "drop in the ocean" point, fr0d0. I was referring to another TPer's pst and the fact that the amount their CCG's budget would save by refusing CHC was a tiny proportion of the CCG budget.

Expansion of the NHS into what is presently social care would have rather more significant costs, and it's much harder to put numbers on it. Some of the cost is at present borne by LAs, so we are really talking only about the number of those with assets above the threshold being added to the public bill, but very roughly, every additional 33,000 persons needing full time residential care adds £1bn to the bill, assuming an average cost to the NHS of £30k pa. I'll see if I can find some stats on the potential numbers involved. We also need to bear in mind two other things - this issue goes much wider than dementia, and that not all of those with dementia or some of the other conditions involved need (or wish) full residential care - as this site shows there are many living with dementia.

BTW arranging large-scale residential care is a role the NHS is not equipped for or remotely capable of managing at present and which it has no wish to assume. It would mean that CCGs would end up having to procure the service, possibly with staff transferred under TUPE from LAs - the result would quite probably be an omnishambles of gargantuan proportions. Also, for those who advocate it, I can't see direct state provision any time soon.

W

 

[Wirralson]

I- 'Choosing where to go into care'. Care homes do not vary hugely. It is not as if state subsidised patients have to go to some sort of 'workhouse' while self-funders are in 5-star hotel luxury. In reality, they are usually in the same home, but the self-funders are just paying more for it (including subsidising others) Wouldn't you rather be state-funded - getting the same care for nothing!

- More expensive homes are not always better, and similarly cheaper homes are not necessarily 'worse' in terms of the actual care.

While I agree with your assertion about price and quality I cannot agree totally that care homes do not differ hugely. I wouldd defy you to visit the range of homes I visited when my mother was going into care and not say how some differed hugely in almost every aspect, including price, staff attitude, cleanliness, condition, atmosphere, spaciousness, food..... We may have different definitions of "hugely" but I think most would find them significant.

W