Continuing Healthcare funding and choice of care home: Part 2

Published 22/07/2016

Please note: This article was published prior to July 2022, and some information may be outdated.

What if your relative does have to move to a cheaper care home or switch care provider?

If your relative starts receiving NHS Continuing Healthcare funding you may be told that they have to move to a different care home or switch to a home care provider on the NHS’s list – not the one you have at present.

This can be an extremely distressing prospect.

In Part 1 of this article we looked at this problem and we highlighted some vital points from NHS guidelines you can use to make your case for staying where you are and/or retaining the same care provider.

But what if your relative does have to move or switch provider?

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.)

National Framework pages 117-119…

Paragraph 99.6:

“…any decisions on moves to other accommodation or changes in care provider should be…put in writing (by the CCG) with reasons given. Advocacy support should be provided where this is appropriate.”

Paragraph 99.7:

“Where an individual become entitled to NHS continuing healthcare and has an existing high-cost care package, CCGs should consider funding the full cost of the existing higher-cost package until a decision is made on whether to meet the higher cost package on an ongoing basis or to arrange an alternative placement.”

In other words, the NHS must consider any such move carefully. It cannot just give you, for example, a few days verbal notice to find alternative care as soon as you’ve received the Continuing Healthcare eligibility decision – and then just leave you to it.

Paragraph 99.10:

“The new accommodation and/or services should reflect the individual’s assessed needs…including taking into account personal needs such as proximity to family members.”

“Individuals should be provided with a reasonable choice of providers.”

“A transition care plan should be developed by the existing and new providers that identifies key needs and preferences, including how any specific needs and risks in the transition process should be addressed.”

“The CCG should keep in regular liaison… and to ensure that any issues that have arisen are being appropriately addressed.”

In other words…

Even if your relative does need to move to a new care home or switch care provider, the CCG must:

consider very carefully whether your relative really does have to move
still cover the cost of ALL the care needs that have been identified and assessed as part of the Continuing Healthcare process, even if that cost is more than it wants to pay
make sure any new care provider is actually up to the job
manage the transition carefully – for the benefit of your relative, not for the sake of NHS budgets
offer you choice

None of this means that Continuing Healthcare funding can be capped and fail to cover all of your relative’s assessed care needs. If your relative needs a high level of care, and that care costs more that what the NHS wants to pay, those care needs must still be covered. The NHS cannot ask you to pay for NHS care.

If your current care home or care provider is the only one able to meet your needs, and it costs more than the NHS wants to pay, your relative’s care needs come first – and the NHS must nevertheless fund all their care needs with that care home or care provider.

Are you just starting out with all this – and looking for a care home or care provider?

Before choosing a care home or care provider it’s a good idea to ask the manager of the care home or care provider if they have – or have had – residents funded through NHS Continuing Healthcare. If they have, the NHS cannot really refuse to fund your relative there too.

It’s worth reading pages 117-119 of the National Framework in full – indeed, it’s worth reading the whole National Framework in full to be as informed and well-armed as possible in NHS Continuing Healthcare assessments and appeals.

Pages 107-110 also deal with the issue of receiving NHS Continuing Healthcare at home.

You’ll find Part 1 of this blog article here.

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

Tagged Categories: Care homes, Care homes and hospitals, CHC funding, NHS Continuing Healthcare

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28 Comments

coral August 3, 2019 at 6:54 pm

My husband has PD, dementia and had a brain tumour removed four years ago; He was
fast tracked and is fully funded. Now he's about to be assessed for a 3rd year. I feel
guilty but he is funded because of health needs, nothing else. Since summarily being
moved from his original "walking wounded" floor, without any prior notice or warning
into the Dementia wing in September last year, his health (and mine) has deteriorated
significantly.

His nursing home is part of a large group which is currently up for sale and according to
press releases, the company wants to make the sale more attractive to potential buyers by
focusing purely on self-funders. They do not want NHS or local authority funded people.
At a recent review, the care home nurse watered down my husbands health needs
in a shocking way. What she said to the Assessor, was clearly misleading and in
some cases false. The Assessor was puzzled as to how someone who had 1 severe, 2 highs
and 3 moderates in 17/18 could have made such a remarkable recovery; this has thrown in
doubt future funding. The CCG has now called another full assessment for next week.

I feel I am in between a rock and a hard place; My battle is now with the Care home rather
than the CHC, who I have found to be efficient and fair from the start of this unhappy
period in our lives. if my husbands health was as good as the care home nurse suggests,
I would be over the moon and he could come home to me. On principal, I feel I must
fight this unfair injustice and would like to thank you for the many helpful articles you
have written, which have been a great help.

Peco

LISA COLLINGS October 15, 2018 at 3:38 pm

We have been recommended for funding, now awaiting CCG decision. We would like to choose a care home for our mother out of her current area. Do we have a chance of funding transferring to a different area or would we have to reapply once in new area? Thanks for any advice

Colette May 8, 2019 at 4:11 pm

Yes you do the funding goes with them but stays with the same area who granted it

Colette October 16, 2018 at 12:46 pm

Hi Lisa, I would wait until you get your confirmation then make the request to move area. We did it without any issues.

C.Parry October 15, 2018 at 8:35 am

Hi
My mum has Parkinson’s & vascular dementia and is CHC funded for the past 6 months, 3 months of that in a nursing. home. Mum was awarded CHC in Lancashire but due to circumstances is in nursing home in Yorkshire. Because she is out of area they say she has to be fully reviewed every 6 months, she has just had a review to say that the home are meeting her needs after 3 months & that a full review will have to be done in six months time. Although the assessor said that mums needs are being met she has shown a significant improvement since being in care. My instinct kicked in & I feel she will not get it in 6 months time. Mum’s house was signed over to us 3 years ago because her hospice consultant said she was palliative care. Her partner left her after 13 years as he could no longer cope so mum came to live with me then I had cancer & unable to cope she then went into a home. I sold her house & as it was mine & my sisters we split the money of £120,000 & cleared debts etc. We had been told 8 months earlier to prepare for mum’s demise & mum was told the same by the hospice pain specialist.
I am now terrified that if they withdraw the funding they will accuse us of diversion of assets. The money has been spent.
Are we in the wrong at all as the house was in our name and we were clearly told she was going to die within months. My mum at the time was 4st 11lbs & is the same in height. Mum is now mobile to a certain extent & reasonably with it most of the time due to medication which they have dramatically cut back on.
Please can you advise as I am making myself ill with worry?
Regards

Mel March 29, 2018 at 10:17 pm

Hi - My Mum was assessed for NHS Continuing Healthcare (CHC) 2 years ago but was award Funded Nursing Care care instead. She moved to a nursing home and 6 months later moved into end of life care. No one at the time re assessed my Mum for CHC. She passed away in March 2017. I left a message with the Social Worker when Mum entered end of life care requesting a reassessment, but received no response and was then so involved in the last few weeks of Mum's life that I did not chase this up. Can I question 12 months later why a CHC reassessment was not completed and if so who would I contact? Social Care or CCG?

Thanks

pamela March 29, 2018 at 9:11 pm

My daughter, who had been receiving funding from the local authority plus part NHS Continuing Healthcare (CHC) funding, has been reassessed and she now qualifies for full CHC funding. She has a care provider, who insists that staff will now still only receive minimum wage. As my daughter has complex needs I think they should be paid more than minimum wage. If my daughter decided to change to direct payments, would she be able to pay them more than the minimum wage? If so what would you say is the current acceptable hourly pay that would be acceptable to CCGs?

Neil Phillips July 25, 2017 at 10:28 am

Our Mum was assessed for Continuing Healthcare (CHC) back in April whilst still in hospital. The Multidisciplinary Team (MDT) meeting followed the proscribed format and was run extremely professionally, nonetheless it was a tough few hours and I would definitely not have wanted to go through it without having first read Angela's book (shameless plug but absolutely true!). The outcome of the assessment was that Mum's condition was such that she warranted CHC (a hollow victory!) and we were able to take up a place in a fantastic care home that we had found. After being there now for several weeks, Mum is settling in well and some aspects of her condition even appear to have improved.
Two questions:
(i) the CCG are stating that their CHC payment to the care home can only cover Mum's healthcare needs. The care home provided a breakdown to the CCG (which I haven't yet seen) which apparently showed the baseline healthcare costs. These are being covered by the CHC payment but the remaining costs we are having to cover using Mum's pension income. This "topping up" amounts to close to £1000/month and I am assuming that the CCG argue that the costs are associated with the various non-healthcare related extras that any/all(?) carehomes provide eg/ activities and events for the residents.
There is no way we would want to move Mum but equally we don't want her to miss out on her entitlement. Would this arrangement be defined as "topping up" and therefore illegal? Or is it just a cosy arrangement between CCG and Carehome provider to ensure that CCG budgets are protected and the Carehome maximises their income?
(ii) Mum will shortly be having a 3 month re-assessment. Should this performed in the same way (ie with a full MDT meeting) and what about the annual re-assessments that the CCG explained would happen?

Angela Sherman July 25, 2017 at 1:11 pm

Thanks for your kind words about the book, Neil - and well done for getting CHC. Take a look at the National Framework page 15 paragraph 33: "Where an individual has a primary health need and is therefore eligible for NHS continuing healthcare, the NHS is responsible for providing ALL of that individual’s assessed health AND social care needs – including accommodation..." CHC covers all care needs, whether they're healthcare or social care - and you should not be asked to top up. Whoever's asking you for money to 'top up' is acting illegally.

K Lemin November 7, 2016 at 3:14 pm

My father's care home has effectively been closed by the local authority's safeguarding nurses & the Care Quality Commission (CQC). At this home he was washed & dressed every day & taken to sit in a small quiet lounge where there was TV on & many of the carers popped in & out & used it as a place where they could write up their care notes so there were always people there often speaking to the residents & any visitors. His incontinence pads were changed regularly & his room had an electric air freshener provided by the home. I have noticed that he is brighter & more alert when taken into the lounge than he is on odd days (such as when the lift breaks down) when he has to stay in his room. They also have a little religious service on Sundays provided by a small local Evangelical Church which my father enjoys. Because he is Continuing Healthcare (CHC) funded I seem to have no say in where he goes next. The CCG have chosen a nursing home which I suspect may be cheaper than others locally, but I have heard through others that have supported people there that residents are just left in their rooms all day, often left in bed, often in wet & dirty incontinence pads & the rooms are dirty & smelly. I have found out that at least one other local home with nursing facilities has vacancies; can I veto the move to the horrible home even if they assess my father & state that they can meet his needs?

Angela Sherman November 11, 2016 at 11:52 am

K - you may be right that the CCG's choice of home is based on their own financial interests instead of the interests of your father. It shouldn't be like this, of course, and I can fully understand why you are concerned about the level of care. You may be able to argue specific concerns to do with emotional and psychological needs, mobility, etc. that could help prevent your father being placed there, and state that it wholly unsuitable for his care. Also, the NHS cannot simply give you one option; you should have a choice.

Sue Aucutt November 4, 2016 at 12:21 pm

My mum was assessed in hospital and now receives Continuing Healthcare (CHC) funding. We were told to look for a suitable placement which took several weeks and two providers said they couldn't meet her challenging behaviour needs as they didn't have staffing at an appropriate level. Eventually her current provider visited and assessed her and offered her a place. Within 48 hours of her admission there they decided they couldn't meet her needs as they don't have the staff and served us with a week's notice to find her somewhere else.
They subsequently relented and said she could stay, but have changed her medication to try and 'modify' her behaviour and on Tuesday again said she will have to go. The CHC team are not proactive and I feel like I have to drive things alone - yesterday they gave me the name of one provider who has not yet decided whether they will assess mum. We don't want mum to be somewhere that can't meet her needs but surely the CCG can negotiate with the current provider and agree a workable solution in mums best interests?? I have held off sending in a letter of complaint to both the provider and the CCG but think this needs to be done prior to the best interests meeting we have booked for 16th Nov. Any advice/guidance would be gratefully received.
Thanks
Sue

Angela Sherman November 11, 2016 at 11:44 am

Sue - it's sadly not unusual for families to have to drive the CHC process. It can be so very frustrating. If the NHS is providing CHC, then they are effectively responsible for your mum's care - and they must be able to offer a provider than can manage all your mum's care needs. Anything less and the NHS could be considered negligent.

R J Cortis October 12, 2016 at 12:08 pm

Can you advise on how an initial decision about which care home is chosen and by whom .. a good friend has been assessed as eligible for CHC .. and is currently receiving carer support at home on a 24 hour basis .. but his spouse will soon find that advanced Parkinsons and Dementia .. mean that this is no longer the right solution for either the sufferer or the spouse. Nearest care home would be ideal .. but is expensive .. so who chooses and how do they make this choice. It is understood that CHC support cannot be topped up.

Angela Sherman October 21, 2016 at 11:41 am

You're correct that CHC cannot legally be topped up, despite many CCGs now seeming to condone it. You have choice about care and care homes, and the NHS must cover all assessed care needs, with cost taken out of the equation. A single choice cannot be imposed on you. If there is no other suitable option where care needs are all addressed safely and comprehensively, where the family can still visit and where it it suitable for a person with dementia, the CCG will need to pay for the option that is safe, suitable and appropriate. You may also want to take a look at the National Framework page 118, paragraph 99.5 onwards.

Debbie eccleston September 13, 2016 at 7:43 pm

My mum is in a residential care home with dementia. We have been told she has declined and has to go to an EMI home. We have found one but it has a top up fee and we have benn told my sister as having lasting power of attorney still cannot use mums money to pay the top up it has to be a third party payment as all the family won't agree to cover the costs. We have started to apply for CHC. Mum has vascular dementia is in continent has COPD, has a bad back and is bed bound at times with it also she is struggling to eat now and losing weight as the carers said she's forgetting how to swallow. What are her chances of getting CHC? Also the social worker has said they will look for a home for her with no top up but where do we stand if we are not happy with their choice? Can we push for them to pay the fees of the home we have picked for mum?

Angela Sherman September 18, 2016 at 1:29 pm

Debbie - yes, it does have to be a third party who pays the top up fee. However, you can't be forced to pay this. Take a look at this article and the links it contains: http://caretobedifferent.co.uk/care-home-top-up-fees/ You also asked what your mum's chances are of receiving Continuing Healthcare funding. You'll need to look at the eligibility criteria; this will help you: http://caretobedifferent.co.uk/how-do-you-know-if-a-continuing-healthcare-assessment-should-be-done/

Shirley August 31, 2016 at 1:07 pm

I have spent almost 4 years trying to secure funding for my late mother , who passed away last August. I was tempted to stop trying at that point but have carried on the fight and have now managed to secure an Independent Review in October. Mum most definitively had a primary healthcare need , aged 91 and suffering with Heart failure, Atrial Fibrilation , osteoporosis, double incontinence and late stage Alzheimers, a combination of which caused her very severe and complex problems. However we, like many others , were continually told that she only had social needs!!! The National framework has been disregarded in so many ways along the whole process, these people really are a law unto themselves and make the rules up as they go along. We have been spun so much nonsense and have endured insults such as " it is her choice" to wander the corridors and get into other people's beds at night when she was so severely cognitively impaired that she had no idea at all of what she was doing. DST's have been lowered on two occasions just so that she did not score two severe weightings even when the evidence was there to support it. However I think the saddest thing of all is that our elderly parents are being treated so disrespectfully and are being thrown on the scrap heap by the NHS , when they are the very people who have help to fund the system for so many years. What a very sad society we live in, something really needs to be sorted out . I am very much looking forward to the Independent review, and will be very interested to see just how 'Independent ' it is. I am nevertheless doing my homework and hopefully can present a very strong case on behalf of my dear late Mum who truly deserves some justice.

Angela Sherman September 4, 2016 at 4:12 pm

Shirley - I can completely understand why you found their comments so insulting. Unbelievable. Wishing you well for the Independent Review. Let us know how you get on. Make sure they, at the very least, follow their own required process on this: https://www.youtube.com/watch?v=yiN5cK50FS0

Mel August 11, 2016 at 6:47 pm

My mum has been awarded the nursing contribution rather than full CHC funding and she has to move from her current residential home to a nursing home. I have visited lots of homes in the local area and placed her name on the two we feel are right for my mum. Can the residential home ask my mum to leave before a bed becomes available at one of these homes? Thanks.

Angela Sherman August 11, 2016 at 7:44 pm

Mel - continuity of care is vital and no one should leave your mum without appropriate and safe care.

GARY CULLUM August 1, 2016 at 9:52 am

How long does it take NHS to start paying the Home the CHC funds? As we have just been granted payment March 2016 going forward and also retrospective from January 2016? Thanks

Angela Sherman August 4, 2016 at 2:31 pm

Gary - it should be immediate. Also, you'll probably be asked to submit copies of all invoices for care fees that your relative has paid since Jan'16 to date. The NHS should also pay interest on the refund: http://caretobedifferent.co.uk/continuing-healthcare-redress-2/

Marilyn Howe July 26, 2016 at 5:32 pm

My husband has just been awarded 'fully funded' Continuing Healthcare in a nursing home where other residents are also fully funded. He was transferred from hospital to this home via a transitional 30 day NHS funded assessment period before being assessed by a MDT. The care home manager says that the funding body (the CCG) pay a set amount to the care home of £578 per week. The room my husband was placed in costs £750 a week, other rooms are more expensive, and I have been told I will be billed for the difference. When I pointed out that top up fees were not allowed under the framework rules, the manager said it was not a top up fee, but an additional payment for comfort. My husband will lose his DLA and only has another £900 per month in pensions. I am also a pensioner; we have very little savings and I'm still paying a mortgage on the property that I own. My husband has Lewy Body dementia with complex and changing needs. I cannot see how we can afford to pay any fees. I have the LPA for my husband. I've had 3 extremely worrying, stressful months and feel I'm running out of fight. I can't seem to get any answers.

Angela Sherman July 31, 2016 at 3:16 pm

Marilyn - if this is an 'additional payment for comfort' (which I somehow doubt, as it sounds too convenient), the care home must be able to give you a itemised breakdown of pricing for these 'luxury extras' they say they're delivering. You should not be forced to pay fees yourself if puts you in a difficult position financially: http://caretobedifferent.co.uk/care-home-top-up-fees/

Angela Sherman July 25, 2016 at 12:04 pm

Gary - CHC funds are paid by the NHS and they are paid directly to the care provider for ongoing care. Any refund of care fees is paid back to your relative by the NHS, not by the care home. See page 133 paragraph 9 of the National Framework: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/213137/National-Framework-for-NHS-CHC-NHS-FNC-Nov-2012.pdf

GARY CULLUM July 22, 2016 at 4:29 pm

Can you please tell us how long it takes for theAuthority to pay out CHC Funds to a home once the decision has been made and would the funds be paid monhtly in advance or???
We have been granted retrospective CHC Funding from jan 2016 untill March 2016 but the Care Home wont refund untill they have been paid by the Authority