NHS continuing healthcare is the name given to a package of care, which is arranged and funded by the NHS. It’s for people over the age of 18 who have a primary health need. Continuing healthcare can be received in any setting outside of hospital, so it can be received in a non-nursing residential healthcare home. It can be received in a care home with nursing and even in your own home. The important thing to bear in mind with continuing health care is that it’s not based on a diagnosis. Eligibility for continuing health care has to be purely based on your care needs alone.

So why is this significant? Nursing care in this country is free at the point of delivery and so those people who are eligible for continuing healthcare will have the full cost of their care and residential accommodation, where that’s part of their care, paid for by the NHS. Whereas those who are not eligible will either have to self-fund their care or they may get some support from social services.

The assessment process for continuing healthcare is a two-stage process and that consists, for most people, of an initial screening using what we call the checklist tool and then moving on to the full assessment process. So with a checklist [um] that can be carried out by any health or social care professional, who has been trained to do so, and so that could be a social worker, that could be a nurse at your care home, a district nurse, GP, for example, any of those people who have the training should be able to carry out the checklist. And the checklist is used to organise an overview of your care needs into 11 what we call care domains. And the care domains, these are sort of categories for organising your, your care. Things like behaviour, cognition, communication, mobility, medication, those sorts of areas.

Now the full stage of assessment is a bit different. This is organised and overseen and administered by your local CCG or clinical commissioning group. Now the CCG should assign a coordinator. So the coordinator brings together that multidisciplinary team they meet with you, as the individual being assessed or your representative, which could be a family member, and they’ll carry out the full continuing healthcare assessment. Once the multidisciplinary team have assessed you, they will then make a recommendation to the clinical commissioning group who should verify that recommendation and make a final decision

If, after a continuing healthcare assessment or indeed a checklist, it’s determined that you do not have a primary health need, so you’re not eligible for continuing healthcare, but you are going into or already in a residential care home with nursing, you would most likely be entitled to something called FNC or funded nursing care. Now funded nursing care is assessed in its own right. So not everybody in a nursing home will be eligible, but the majority of people will be, and this is a small amount of money, which is paid on a weekly basis, usually to the care provider. And that is to pay for the nursing care, which is being delivered by a registered nurse within that care setting so it’s a fairly small amount.

So the whole assessment process, this is, from the point in which a checklist is completed and referred to the clinical commissioning group, through to the point in which you receive your final decision, that should take no longer than 28 days. So the point of referral to final decision, 28 days.

You said earlier that you knew that you would get some funded nursing care was that what they were referring to was sort of half-funding?

No, that was if somebody goes into a nursing home and they have sort of recognised health needs there’s a payment I think it’s about £150 a week which is a contribution towards the costs of care so, but the continual healthcare funding is something else, yeah, yeah, but it all comes out of NHS funding in the end, so yeah.

You don’t know where to go to, and it’s the, then you’re, then it tends to be the care homes who will tell you as to what will happen with regards to funding. But I didn’t realise that she was entitled to keep her attendance allowance when she was in a care home and if she’s, if they’re in a nursing home they can also get a nursing allowance, which nobody tells you about, so.

And did you go to the local authority at any point for any assessments?

Only when we asked for an assessment for continuing healthcare, but that was arranged through the care home.

Because you always knew that funding was going to be your responsibility, so…?

Yeah, yeah. And, and, and I only found out about continuing health care through talking to other relatives in the care home.

Myra died two years, two weeks later, it never got to the stage where I got any, I had to pay and then they would refund, I never got to the stage and I didn’t really want to pursue it. So I did pay for that but it would have been, if it, I know someone who’s had it for six months, palliative care is free, well free to the individual, you know?

So that’s a good function and if it’s still happening you know, I think that was a commendable arrangement.

Tell me about the process then of getting the continuing healthcare?

That was that was a difficult process that was in the first care home we tried that, because somebody mentioned to me, one of the healthcare staff said, “You may, because of his decline, you may be able to get some healthcare funding, which means his place there will be funded.” And I didn’t know anything about this until I’d heard that, and I had read some bits and pieces about that so I thought I’ll try. And then the social workers were brought in, we had meet, a couple of meetings, and it turned out that dad fulfilled all the criteria for healthcare funding and then so that, a couple of months and then that worked. But, you know, I had to be strong and fight for that.

So who told you then that you could possibly apply for that – was it a member of staff?

It was somebody who came in to see mum and dad, and it was one of the financial assessors from [town]. She said that, yeah, because they had a couple of assessments for their finances over the time.

So [laughs] so you know that you’re just a sort of bed blocker really. So we started having meetings and I said that I thought that really John couldn’t go home, you know, it was, that the point had come where it was making a proper break really from hospital and the rehab unit into a nursing home and because they were talking about two carers four times a day and he was hoisted at that point. So it would have been, it would have been difficult really, so, although, you know, with hindsight you, you have, you have your guilt about it all, but anyway that’s what I thought. And I also mentioned about continual healthcare funding at that point, whether we should whether we might be eligible for that and the social worker at [Rehab unit] sort of agreed with me and, but they agreed that he met the criteria to go forward to be assessed for continual healthcare funding.

He was deemed to be needing only residential care when he went in and there was a thing saying at some point he could need nursing care and almost immediately after he went in there was some form of assessment that they needed to do to; I think it was a question of it was sort of future proofing. So they were doing an assessment of the likelihood of the need for nursing care; I mean I have to say I didn’t quite understand exactly what they were doing. But there was no increase as his situation deteriorated, there was no increase in cost, an additional nursing care charge. So he received all the care that he needed until the very end when I asked about continuing healthcare funding and the care home said, “Ooh yes, yes, yes, I think perhaps, yeah, that, ooh, ooh, yeah, ooh, good point” you know.

I don’t think so, at that stage. When we first received that news that she’d been; I mean that word ‘continuing’ the start of continuing healthcare makes you think that it’s continuing and would not be discontinued. So maybe that’s a misnomer, maybe it’s not [laughs] I don’t know. But yeah, it gives you some impression that we’re covered, we’re covered and thankfully, thankfully, and luckily, we don’t have to be worried about that; and I appreciate that that’s a very personal view because obviously other people are in similar situations who don’t get fast-tracked who don’t get the funding and have to find it themselves. So yes, we found ourselves thinking well we’ve been quite lucky there, under the circumstances. Obviously all wish mum wasn’t in that situation in the first place but you know, under those circumstances we were fortunate.

OK, it was withdrawn after [sighs] about 9 months, 8 or 9 months it was withdrawn, and mum has been paying for residential and nursing care for about 12 months now. So I don’t know if that stacks up with the previous figures I’ve given you but that, I think that’s more accurate. 8 months funded, currently about 12 months unfunded.

For people who are perhaps nearing the end of their life there is a slightly different process involved in assessing them for continuing healthcare and that’s called the fast track process. That decision needs to be made by an appropriate clinician. They then complete the fast track paperwork, without having to get a whole multidisciplinary team together, they should send that off with justification to the clinical commissioning group who should then authorise it and put that care and funding in place.

If you have been assessed as eligible for continuing health care, one thing to be aware of is that eligibility is not guaranteed for life. It’s normally reviewed initially three months after the first assessment and then annually thereafter.

I’m not saying I’m special in any sort of way, but I understood the process, I understood the sort of language you needed to use and the evidence you needed to provide and, you know, and use this word rather than that word because that’s more powerful than that one, you know. So I sort of understood that, I knew how to present the case, I hope, reasonably persuasively, and the fact that I got it obviously showed that something worked. But, you know, it’s like applying for any of these things anywhere, whether it’s CHC funding, whether it’s a blue badge, whether it’s; it seems to me that the people who are approving what you’re applying for come with it with a built-in assumption that you’re trying to screw the system; that’s the starting point, you are out to get something you’re not entitled to [laughs] so you have got to prove that you are entitled to it rather than, OK, you’re in a really difficult situation, how can we see, how can we work together to see what you’re best entitled to have? And it might not be what you think, what you were applying for, but it might be something else instead.

You’ve got to be alert and stay with it, but I have to say in those last few weeks trying to get my mum out of hospital I was struggling to focus on things; I was going down there every day and my mind was pretty, pretty much soaked with emotion. So it, I know it has to happen, they must do this lots and lots of times, why not just make it easy for the family members? They know what they’re going to do but just ease the, ease that burden, which doesn’t have to be there if it’s uniform and it should be. I mean I wouldn’t want to think that I got something for my mum that somebody else couldn’t get.

So that was the process in which you managed to get her to a nursing home, out of the hospital into a nursing home, and indeed that was then paid for by the NHS?

Yes, but I had a conversation even then about, well you might have to pay top-up provision. That’s, if they know what they’re going to do and then, and I understand money is tight, it’s probably a lot tighter now, but if there are agreed processes and procedures then it seems, to the point of being cruel, to put people through that turmoil at a time which is pretty damn difficult.

Well no, it wasn’t linked to the savings because the healthcare funding is a separate thing, you know, if they, if it finds out that their, it doesn’t matter what their savings were then, yeah it was a case of his…

So it was to do with his needs assessment?

…his, his needs, yeah whether that transfers to National Health or whether it’s still part of the Social Care, and it was still part of Social Care but healthcare funding, yeah. And so he did fulfil all the criteria, but I think only because I kept on at them, you know, “We need to try this.” Because the couple of the, people at the- staff at the home were overworked and they hadn’t got time for other meetings.

So told me the costs and we knew we would get funded nursing care, which was, it’s about £150 a week, I think, something like that. So he, a place became available about ten days/two weeks later, so he was transferred by ambulance to [Residential home] Nursing Home and I mean at that point we knew we were self-funding but the continual healthcare funding was overhanging at the time really. So I then got, was getting bills from [Residential home] and we got to, well I think there was a £6,000 bill and a £7,000 bill, and I explained to them that we were in the process of continual healthcare funding, we were, we had an interview which they’d postponed and so, you know, that was what we were waiting for, so they agreed to defer it really.

Yeah, so that was the other thing about it; we were told she was end-of-life and the person who told us that said that she thought that mum would be eligible for C-, for CHC, yeah. As soon as we moved her into nursing the nurse tells us, “she’s not at end of life, in my opinion,” and “in my opinion she won’t get CHC.” Yeah, so that we thought was; I mean we should have been getting one message [laughs] from them, yeah? They should have had that discussion before they talked to us and I don’t think they did and I think that was; I mean it’s awful to say because the standard of the care there has been great, but it just feels like they were trying to screw a bit more money out of us, I’m afraid.

I suppose I’ve got a bit of a network now; and then, but there’s, you know, but then you get, well not anecdotes, but people have said, oh my husband, we got continuing care for my husband, you know, and then I think, you know, she’s really wealthy, that woman, how did she get continuing care? I mean that’s a great mystery, the continuing care thing, and I’ve just got a brochure now but, you know it seems, it’s a mystery, the continuing care thing, it seems to me. So anyway, so it seems, it seems some people seem to be getting things and yet their situation seem to be comparable to my mum. So that’s a bit of a frustration but I’m not going to get too worked about it because we’re surviving at the moment, so.

I did apply for the; what’s it called? That you can get, because of what I’d heard from other people; the NHS continuing funding care you know, if you, they feel you have a medical, more of a nursing/medical need, because it is, this where [husband’s name] is, is just for dementia care, it’s not a nursing home, which again I realise perhaps it would have been better if it was both in that there would have been a nurse in there, whereas if anything goes wrong they have to apply to the Hub, the district nurses, or else to the doctors, so, and; anyway, we had a long assessment [sighs] last year but the outcome was that because it was mostly his behaviour that was a challenge though he has got lots of the medical needs, they weren’t the, they weren’t the challenge. But I do feel that it does vary because, because I have kept in touch with some of the group; some of the people have had everything paid [laughs] and others haven’t it is very strange but it’s, it’s just how it is.

No, I don’t think they would have done, because I think that’s the flaw in the system about the lack about that sort of, that’s what I talked about earlier, about this navigator role and, yes, at a more advanced stage it would probably need to be somebody like the community dement, community dementia nurse or, you know, somebody more versed in the, in the particular intricacies of the system at that time. But that’s why you need somebody to be able to hand-hold and to say, ah this is the point at which you should be thinking about CHC funding applications, you know?

Finally found a place and dad was very concerned, “How much is this going to cost? How much is this going to cost?” And I said, “Dad, we’ll work that out, we will work it out with you as to what it will cost.” But of course as it happened when we actually did all the assessments and everything it was a fully funded placement because my mum also had a she had a hypertrophic, hypertrophic cardiomyopathy, which is a heart condition. So she qualified for the funding from the NHS. Now the challenge here is that many people will struggle with that because they actually won’t be able to understand the form filling and all of that; so I think it is a huge challenge. I knew the system so it was very different in that I was able to work with the home; and the best thing is the managers of the services in care homes, if that is where you’re going to go down the route, they are the ones that should be able to support you through the process of how the funding can work, because they should have the knowledge and the experience to be looking at the different funds that are available. In some cases you do find providers are not really inclined to support but that is where the best support is.