Continuing Healthcare funding and choice of care home: Part 1

Continuing Healthcare funding and choice of care home: Part 1

Continuing Healthcare funding and choice of care homeDo you have to move to a different care home once you receive Continuing Healthcare funding?

This two-part article looks at an issue raised frequently by families on our blog: It’s about Continuing Healthcare funding and choice of care home or care provider.

When you receive NHS Continuing Healthcare funding do you have to move to a different (cheaper) care home or change your care provider at home?

Families are also often told that if they want their relative to stay where they are currently, the family will have to pay part of the cost, i.e. top up the NHS Continuing Healthcare funding payments themselves – effectively paying for NHS care.

Let’s look at what the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care says about this. (The National Framework is the main set of guidelines for Continuing Healthcare assessments.)

But before we do, remember that the following 5 principals hold true regardless:

1. NHS Continuing Healthcare funding cannot be topped up. Top ups are only relevant to local authority means test care – not NHS care.

2. Continuing Healthcare funding must cover ALL assessed care needs regardless of where your relative is receiving that care. The NHS cannot neglect to fund all care needs identified during the assessment process.

3. Some Clinical Commissioning Groups (CCGs) are trying to impose a financial limit beyond above they will not pay for care. However, if your relative’s needs are high and their care costs are more than the NHS wants to pay, it doesn’t matter; the NHS must fund all the assessed care needs regardless.

4. Remember that when a person receives NHS Continuing Healthcare it’s because their care needs are such that they require NHS care and the NHS is legally responsible for paying – even if the actual care is provided by a private care home or care provider. It’s a bit like receiving care in hospital – you don’t have to pay. In England, just because a person is outside hospital when receiving their care, this principle does not change.

5. Continuing Healthcare is not dependent on where your relative is, i.e. in a care home, at home or elsewhere.

That said, there are certain paragraphs in the National Framework guidelines that are useful to mention here.

Let’s look at pages 117-119 of the National Framework…

Paragraph 99.1 states:

“The funding provided by CCGs in NHS continuing healthcare packages should be sufficient to meet the needs identified in the care plan, based on the CCG’s knowledge of the costs of services for the relevant needs in the locality where they are to be provided.”

“It is also important that the models of support and the provider used are appropriate to the individual’s needs and have the confidence of the person receiving the services.”

So…

  • all the care needs identified during the Continuing Healthcare assessment process must be included in the care plan AND must be funded by the NHS through Continuing Healthcare
  • the CCG must appreciate that there may be cost variances in different areas of the country
  • the care provider must have the resource and ability to care for all of those needs – and if the cost is higher because of the needs of the person, the NHS still covers the cost.

Paragraph 99.2 states:

“…it will not usually be permissible for individuals to pay for higher-cost services and/or accommodation (as distinct from purchasing additional services).”

Paragraph 99.3:

“‘Topping-up’…is not permissible under NHS legislation.”

In other words, you cannot top up NHS Continuing Healthcare funding – and you should not be asked to do so. This would be illegal. It is NHS care funding. Top ups are relevant only to local authority means tested care.

Pages 114-115 of the National Framework also cover this issue, including page 114 paragraph 96.1c, which says:

“…patients should never be charged for their NHS care, or be allowed to pay towards an NHS service (except where specific legislation is in place to allow this) as this would contravene the founding principles and legislation of the NHS.”

It’s worth reading the whole of pages 114-115 in the National Framework in this respect.

What if you already have a higher-cost care provider or care home once you become eligible for Continuing Healthcare?

We’re going back now to pages 117-119.

Paragraph 99.3 states:

“…there are some circumstances where a CCG may propose a move to different accommodation or a change in care provision.’

Paragraph 99.4:

“In such situations, CCGs should consider whether there are reasons why they should meet the full cost of the care package, notwithstanding that it is at a higher rate, such as that the frailty, mental health needs or other relevant needs of the individual mean that a move to other accommodation could involve significant risk to their health and well being.”

Paragraph 99.6:

“CCGs should deal with the above situations with sensitivity and in close liaison with the individuals affected…”

In other words, it comes back to the care needs every time. This must be the priority.

If it would be detrimental to your relative for them to be moved to another care home, the NHS may have a duty to fund all care where they are at present – and to continue to do so. People with cognitive, behavioural and/or psychological challenges often need familiarity as a priority; moving someone with such needs to a new care home or care provider can be extremely damaging to their health and wellbeing.

But what if your relative does have to move to a cheaper care home or switch care provider? We look at this in Part 2.

What’s your experience of having to change care provider or move to a different care home?

17 Comments

  1. Lynn Delaney 1 month ago

    Hello.

    We have just had the Decision Support Tool (DST) meeting for my Mum and were told at the end that they would not be recommending Continuing Healthcare (CHC) although she has very, very high needs, they don’t class them as health!! During the meeting there were a couple of things where they did not follow their own guidelines and even after I pointed them out they still refused to acknowledge them. One was regarding her skin integrity, my Mum is very prone to bed sores and has to be turned every 2 hours and cream applied otherwise they appear and very quickly. The assessors where arguing with me that because there were no open wounds at present it could only be scored low, while I said that it should be high as it is still a need even though it is being managed and if she was to be left there would be open wounds in a matter of a day or so but they weren’t having it. They also said that because her cognition was Severe her mood and emotions could only be Low. Again I quoted their own guidelines that every domain needs to be weighted in their on right, but again they wouldn’t listen. It was logged (I think) that I disagreed. Finally after the decision the assessor did say she was on the cusp of receiving the Funded Nursing Care but then cut us off by saying that my Mum would have to be moved. She has been in a residential home for 3 years so although she is unaware of where she is, she is familiar with the carers and they know her needs very, very well. Moving her to a nursing home where no-one knows her needs would be very damaging so we decided against it. Am I right in thinking that the CHC or the Funded Nursing Care can still be given in a residential home? We can’t decide whether to appeal as we don’t want her to be moved if successful.

  2. Lauren 6 months ago

    With the help of your articles, I have just received correspondence confirming that my mum has been awarded Continuing Healthcare (CHC) Full Funding. My question is what happens next? My dad is currently mum’s main carer at home with two self funded carer’s visiting twice daily. As dad’s health is failing we have made the decision that a nursing home would be the best option for mum. What is the process at this point to get mum into a nursing home that the funding will cover or will the funding offered be expected to provide further care at home? Your advice would be much appreciated.

  3. Pauline 12 months ago

    My dad is awaiting DST decision. I rang the OT today who was part of the MDT with the nurse assessor. The OT knows my dad well & has been extremely helpful &supportive. Dad has mixed dementia with challenging behaviour managed with antipsychotics. She pushed for a priority rating for behaviour in the assessment although the nurse felt it was severe. He also got severe for cognition. Dad has been paying for 2 live-in carers since Feb. It seems that the nurse has since raised a safeguarding alert because of his challenging behaviour recorded in the care log. I collated a mass of evidence which now seems to have worked against us as she is now recommending care in a secure environment with 24hr RMN cover. It seems she has breached many of the Guidelines in that the OTs were not given the draft DST to comment on or sign as members of the MDT. They are currently challenging this & I have emailed the nurse today asking for information. Can she insist on a change of care environment? We have fought so hard to keep dad at home & he is now in the end stages of dementia. We are prepared to fight this & will involve the psychiatrist who agrees home is best for dad. Thanks Pauline

    • Author
      Angela Sherman 12 months ago

      Pauline – the primary consideration here is the safety and wellbeing of your dad. As he has two Severe scores and given the nature of his needs, he should be found eligible for Continuing Healthcare funding. For that reason, there is a possibility that the NHS are now looking at things from a cost perspective now, instead of looking at it in terms of where would be best for your dad. We hear this frequently from other families too. Keep reinforcing the point about the NHS having a duty to consider the impact on your dad if he had to move.

  4. Julie Williams 1 year ago

    My mum is currently awaiting a multidisciplinary team (MDT) continuing healthcare meeting to see if she meets the criteria. If she doesn’t I have been told she will have to move to another care home as I can’t afford the top up fees. Is this right, as she had spent £90,0000 and has now run out of money. As I see it, it’s a case of I have had your money now go.

    • Rosie Mason 1 year ago

      Hello Julie
      My Mum is in the same situation. She will have been resident at this home for 3yrs in September. See knows all the carers, but has very bad Dementia. Her sight is going her left eye has a very bad cataract which should have been removed, but due to the Dementia and Anxiety wasn’t possible. The other eye has a cataract but is better than the other. Her money is going down rapidly, by September we shall be on the threshold. It is a very big worry. Rosie

    • Author
      Angela Sherman 1 year ago

      Julie – if your mum does not receive Continuing Healthcare funding, it means the local authority (LA) has agreed that her care needs are within the LA’s legal remit. If that is genuinely the case, and she is also below the capital threshold for her own money, the LA must contribute, which means she may potentially have to move to a home that fits with the LA weekly ‘rate’. (Unlike the NHS, LA’s have a fixed ‘rate’ they will pay.)

    • Author
      Angela Sherman 12 months ago

      Julie – see my responses to P and to G above.

  5. P. 1 year ago

    My mum is in a lovely home and has just been given Continuing Healthcare (CHC) funding. The home has requested £80 a week payment, as the CHC payment doesn’t cover their bill. Is this correct?
    It is a lovely home and far nicer than most in the area (and costs almost twice what the local authority pays /charges.) Mum has been self funding until the CHC payment given.

    • Author
      Angela Sherman 1 year ago

      P – any shortfall in Continuing Healthcare payments to the care home is a matter that the care home needs to take up with the NHS; the care home should not be coming to you for the difference.

      • P. 1 year ago

        The manageress said (just when she was letting me know mum had got CHC funding…I haven’t challenged anything) that the NHS only cover to a certain limit and if we didn’t pay it mum would have to go to a home that charges less.

        • G 1 year ago

          We’re are really worried because my sister-in-law has just been awarded continuing healthcare. She has Vascular Dementia, advanced Parkinson’s, completely immobile, TIAs every couple of months and other things, some detailed below.

          She was fast tracked for continuing care by a consultant on leaving hospital after the last TIA. We were told by the business manager at her residential care home that, because she now has NHS CHC, she should be in a nursing home and they were only letting her stay out of the goodness of their heart but I put him straight on that. This was whilst the manager of the home was away. We raised on her return and she said that it was no problem at all and she would definitely be staying.

          Her daughters live in Australia hence the reason why her brother and I have to do everything and we have P of A. The thing is that the owner told us that her daughters still had to pay the top up that they paid when she was LA funded, so they are doing this, but you have pointed out that this is illegal. Our worry is that if we challenge it and the NHS deem it’s not detrimental for her to be moved then she will have to move. This is a lovely home, it is HER home and she sees it exactly as that. All the other homes we saw were horrible. We know that she will deteriorate really quickly if she is moved.

          The anxiety itself could increase her blood pressure which is extremely dangerous for her as she has a dissected aorta as well as an abdominal aortic aneurysm which could rupture and could also bring on a full blown stroke.

          • Author
            Angela Sherman 12 months ago

            CHC is not just for nursing home residents. It doesn’t matter what kind of care home a person is in – it can be residential, nursing, or any other setting. So you were right to correct the business manager on that. LA funded care and NHS funded care are two completely different things, and so it sounds as though the owner doesn’t know what he/she is talking about. Top ups are for LA care only. You may want to quote the National Framework paragraphs to the owner – and reinforce the point about the NHS having a duty to consider what the impact on your sister in law would be if she had to move. There is a conflict of interest between care homes and CHC – because the care home will generally receive less money from the NHS than they would if a person was self-funding or topping up LA care.

        • Author
          Angela Sherman 12 months ago

          There’s no fixed limit across the board for CHC. It must cover all assessed care needs for each individual, whatever they are. That’s the first priority. Be sure to also read Part 2 of the article. (See link at the end of this article.)

      • Jane Blackmore 1 year ago

        My brother who has early on-set Parkinsons… he was diagnosed at the age of 32 and is now 46 has just been told he is not eligible for NHS Continuing Healthcare funding. The letter received, following his assessment, states “Information from multidisciplinary assessments has been used to complete a Decision Support Tool which together with other key evidence determines that a Primary Health Need has not been established”. We are going to appeal but first we would like a copy of the report that was sent to Panel. Can we ask for a copy of the report and if so who do we ask. We are getting absolutely no sense from the Social Worker (when she does bother to return our calls/emails,)nor from the district nurses who came out with the social workers to do the assessments. The report, apparently, was re-submitted to the Panel on at least three ocassions as they were asking for additional information before making a decision. When I pushed to know what additional information were they wanting, the district nurse told me “bits and bobs” and refused point blank to tell me what info they wanted. I also wanted to know who was on the Panel and if we could attend the Panel … apparently not. I want to know what was put in the report as I am concerned that they have misled the Panel in terms of my brother’s medication. We found out from an Advocate, that the social worker had actually said to her that my brother sometimes refused to take his medication, which is so not true and if this had been put in the report then it could have weighed heavily on the outcome. Any advice appreciated.

        • Author
          Angela Sherman 12 months ago

          Jane – if you are acting as your brother’s representative or you have power of attorney, you should have a copy of the completed Decision Support Tool (DST). This is usually sent by the CHC team, after the multidisciplinary team meeting. You should also have a copy of the original Checklist. It’s vital to have these documents, especially the DST, otherwise you can’t easily appeal what’s been said and done. The National Framework guidelines make it clear that the family should be kept involved at all times, and should be invite to inout into all assessments. It sounds as though some of those people involved in your situation are being very vague, and that seems suspicious. Family members don’t usually attend the actual decision making panel, but must be involved in the multidisciplinary team discussions that lead to the funding recommendation.

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