Should you pay care fees if your NHS Continuing Healthcare Funding is refused or withdrawn?

Published 18/09/2020

Please note: This article was published prior to July 2022, and some information may be outdated.

Should you pay care fees?

We’re often asked this question, and it’s an area many people find confusing. We always advise people not to start paying care fees automatically, but to consider challenging what they’re told by the Continuing Healthcare assessors. However, whether you are obliged to pay largely depends on what stage of the assessment, review or appeal stage you have reached. We explore 5 different situations below and offer our guidance to help you.

There are many good health and social care workers. At the same time, there are many who seem to have only scant understanding of the official guidelines (and the law) when it comes to NHS Continuing Healthcare Funding (CHC). Unfortunately, this can lead to many families being given incorrect information and their relative being inappropriately railroaded into paying care fees before the proper funding decision-making process is complete.

The National Framework for NHS Continuing Healthcare and NHS-Funded Nursing Care (revised October 2018) provides the official guidelines that dictate how eligibility for NHS CHC Funding should be carried and who has to pay. All Clinical Commissioning Groups (CCGs) are bound by these NHS guidelines and are obliged to follow them when carrying out their CHC assessments, reviews and appeals.

Only if it is clearly and reliably shown that a person is not entitled to NHS care (no matter what their age or circumstances) should CHC Funding be refused. However, if you genuinely believe that your relative has had their funding incorrectly withdrawn or wrongly declined, then consider whether there were any flaws in the CHC process or if the eligibility criteria were incorrectly applied. Take immediate action to address any concerns you have as delay could be detrimental to your relative’s entitlement to funding.

Disputes about CHC eligibility are always ultimately about money and who pays – whether it’s your relative who may be self-funding, the NHS and/or the local authority.

Let’s look at 5 common scenarios where your relative could be asked to pay for their care and what you can do:

1. Waiting for an initial Checklist assessment after discharge from hospital

Under the 2018 revised version of the National Framework, it is now preferable that assessments for CHC Funding should take place outside the acute hospital setting so as not to delay a patient’s discharge and to get a more accurate assessment of their long-term healthcare needs (see paragraphs 109 – 111).

Under new Government guidance, with effect from 1^st September 2020, when an individual is ready to be discharged safely from hospital, the NHS should put funding in place to support their recovery and rehabilitation needs for the first 6 weeks whilst an assessment for CHC Funding is completed.

If this process takes longer than 6 weeks, the NHS and/or Local Authority will continue to pay for care until that assessment takes place and the decision is notified to you. In the meantime, your relative should not be required to pay for their care.

The position is similar to paragraph 112 of the National Framework, which states that when a person who needs a care package is discharged from hospital: “There must be no gap in the provision of appropriate support to meet the individual’s needs.” And so, they are entitled to an interim package of care until their healthcare needs can be properly assessed.

So, just because an assessment has been deferred or delayed by the NHS, this should not let the NHS off the hook in funding your relative’s care in the interim period.

What’s more, if there is a dispute between the NHS and Local Authority as to which organisation has to pay for care, that should not affect your relative’s funding which should continue regardless without any gaps. The National Framework helpfully sets out detailed guidance as to how these organisations should attempt to resolve disputes over funding between themselves:

208 & 210: “Individuals must never be left without appropriate support while disputes between statutory bodies about funding responsibilities are resolved.”

213: “In situations where there is a dispute between CCGs regarding responsibility for an individual, then the underlying principle is that there should be no gaps in responsibility as a result. No treatment should be refused or delayed due to uncertainty or ambiguity as to which CCG is responsible for funding an individual’s healthcare provision. CCGs should agree interim responsibilities for who funds the package until the dispute is resolved. Where the CCGs are unable to resolve their dispute using current guidance, as a last resort the matter should be referred to NHS England.”

The clear overriding principle is that there should be no gap in your relative’s care and that the nature of the funding should not be changed (or illegally forced upon someone) just because a final funding decision has not yet been reached.

This applies whether or not your relative is already in care or not. If the NHS can’t get its act together regarding funding decisions, it’s not the fault of the individual being asked to pay fees.

But should you pay care fees?

In short, the answer is ‘no’. If your relative has been discharged from hospital and is awaiting a Checklist assessment, they should not be asked to pay for their care until it has taken place and the decision has been notified to you.

However, if your relative does not pass the initial Checklist assessment, then it is likely that their care needs are not of a sufficiently high level at that stage, and so, they will have to pay for their care unless local authority funding is available instead.

2. You’ve passed the Checklist assessment and are awaiting the outcome decision of the Full Assessment

The Full Assessment is carried out by a Multi-Disciplinary Team (MDT). If CHC Funding is awarded, then the NHS will pay for all your relative’s assessed healthcare needs including their accommodation and they shouldn’t be asked to pay a penny. Success!

But should you pay care fees?

However, whilst waiting for the MDT outcome, your relative may be required to pay for their own care. Read our suggestions below, if your relative falls into this category.

3. Refused funding after the Full MDT Assessment?

If, however, the MDT do not recommend CHC Funding and your relative’s application is rejected by the CCG, ordinarily, they will be expected to pay for their own care fees – whether through local authority funding or else from their own private means.

If you believe that MDT assessment was flawed or the decision to refuse funding is wrong, then make sure you appeal. You only have 6 months to lodge your appeal, so do not delay!

In the meantime, your relative will usually be required to pay for their care whilst their appeal is pending. Beware, that some appeals can take many months – sometimes as long as 12 to 18 months, so the sooner you can lodge your appeal, the better. There are plenty of helpful blogs and resources on our website giving guidance and help with your appeal, but don’t forget you can always seek professional expert advice and advocacy support with your appeal.

4. Been turned down for CHC funding after a 3 or 12 monthly review?

If CHC Funding is awarded, CCGs are obliged to carry out an initial review at 3 months, and then again, every 12 months thereafter. In the current COVID-19 environment, nearly all these reviews were put on hold since March 2020. But, since the 1^st September 2020, CCGs have been told by the Government to get back to business and restart reviews.

Often, people receiving CHC Funding for care find that their funding is taken away after a review. From viewing our readers’ comments, there was a time where it seemed that CCGs were targeting people who have previously been awarded full CHC Funding – and systematically taking it away. This was happening to people whose care needs had actually increased and whose health was deteriorating, and to people who needed round-the-clock nursing care.

The case of John Morrison highlighted in Victoria Derbyshire’s BBC documentary on 11^th June 2019 is one such vivid example. John suffers with cerebral palsy and has no use of his limbs. John was initially granted CHC Funding, but it was then withdrawn upon review in 2009 – despite clearly having healthcare needs which had not improved. Following a lengthy 10 year battle with the CCG, John’s CHC Funding was finally reinstated – leaving his family to retrospectively reclaim an estimated £300,000 for wrongly charged fees. You can read more about John’s case and the issue concerning reviews in our blog: Exposed: NHS Continuing Healthcare makes headline BBC News.

However, with the latest 2018 edition of the National Framework, the emphasis has noticeably changed. According to paragraph 183 of the National Framework, “These reviews should primarily focus on whether the plan or arrangements remain appropriate to meet the individual’s needs. It is expected in the majority of cases there will be no need to reassess for eligibility.” Therefore, reviews should no longer be regarded as an excuse for CCGs to withdraw existing funding unless there is evidence of a clear change in the individual’s needs, in which case the matter can be referred back to an MDT for reassessment. This is probably why so many families still fear these reviews and have sleepless nights worrying that their relative’s genuine need for funding could still be taken away, leaving them to self-fund, despite the obvious need for CHC Funding (just like John Morrison’s case).

But should you pay care fees?

Whilst the review is underway or reassessment by an MDT is in process, your relative should not be required to pay for their care until the outcome decision is made.

If, however, CHC funding is subsequently withdrawn, your relative will probably be told to start paying for their care – often using private means and savings, or they may even be forced to sell their home (unless they are eligible for local authority funding instead).

For more information, read our blog:

Beware! Annual Reviews can lead to CHC Funded Care being withdrawn

5. Been turned down for CHC Funding on appeal?

If you’ve reached the end of the line and your appeal to either the CCG’s Local Resolution Panel or to an NHS England Independent Review Panel are unsuccessful, then your relative will have to pay or make arrangements to cover the cost of their care either with the help of local authority funding or from their own private assets or savings.

What can you do about care fees?

If your relative has been awarded CHC Funding, the CCG will pay the cost of their care directly to the care home on your behalf. There will be an agreement in place between the CCG and the care home, so if the CCG stop paying, then arguably, it is for the care provider to chase payment and ensure that they are paid.

Generally speaking, if you are waiting the outcome of an assessment or appeal, you can try speaking to the care home manager to see if they are willing to defer payment until a decision has been reached. Suggest that they send their invoices to the CCG for payment pending resolution of these matters or else hold them in abeyance, as ultimately, you believe the CCG will be responsible once the matter is resolved (or any flawed decision is overturned).

Naturally, most care homes may not be too sympathetic to the idea of deferring payment or putting themselves into direct conflict with their local CCG (or local authority) whilst you wait for a decision on funding. Don’t forget, they too have a business to run, and in many circumstances it will be easier to seek payment from the family under the terms of their contract for care services, than it will be to approach the NHS. Understandably, many families will tread carefully, for fear of affecting the relationship with the care home, especially whilst they are looking after your relative. Some families will therefore choose to continue paying care fees as the safer option and just for peace of mind, while others may try to negotiate and hold out until the funding decision has gone through. It often comes down to doing what you feel most comfortable with and whether you think you might get a sympathetic response from the care home.

Remember, you are entitled to have specialist advocacy support at any stage of your relative’s assessment, review or appeal. Visit our one-to-one page if you need specialist assistance.

Share your experiences below of situations where you felt coerced into paying care fees and how you successfully dealt with the situation…

Tagged Categories: Appeals and reviews, Care fees, CHC funding, Legal and financial matters, NHS Continuing Healthcare

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8 Comments

Liz Curnock November 19, 2020 at 9:02 am

I have poa for my aunts finances and have been paying her care fees since 2018 i asked the care home after she had a fall if she would be entiled to nhs funding seeing as she broke her hip shes 96 a meeting was held where i told them she has a broken hip has numerous falls she has dementia shes incontinent shes deaf she wont eat without prompting all of this info came from a care assistant who worked there at the meeting the manager denied everything saying shes not incontinent she knows when she needs toilet so whys she wearing a pad then ? Oh thats because sometimes she doesnt make it to the toilet on time the manager also said she dont need prompting to eat if a cake is put in front of her !! Regarding the broken hip she blamed me !! For not providing her antislip slippers i had bought her a pair 2 weeks before her fall out of my money but the home denied that i had the meeting ended with shes not entitled to any funding based on what the manager has told us i couldent give the care assitants name who fed me the information due to her being scared of losing her job the home have not let me talk to my aunt on the phone since the beginning of covid ive had no contact although ive rang several times asking how she is i went into hospital myself this year with a serious illness and admitedly i forgot to pay her fees i was sent a demand letter next thing i no ive been reported to the opg for not doing my job as a poa the care assistant ive spoken to has told me im not the 1st person they have done this to they try to do it with any self funder to try and take over the poa

Kareen Bagshaw October 16, 2020 at 11:02 am

In September 2016 by husband was eventually granted half of his care home fees to be paid by NHS Continuing Health Care. I have paid the other half of his fees. Suddenly in March they reviewed him and said he was not eligible any more and funding would be stopped. I complained as I said what had changed between last year and this one, except that he was deteriorating. He suffered from advanced dementia. After correspondence and telephone calls in March when I agreed I wanted to complain officially [I last wrote complaining on March 19th] I have heard nothing since and in fact my husband died on 27th July. The care home has now come back to me to say the funding from the CCG was stopped in April and they had not realised this and I will be left to find the thousands of pounds to make up the deficit between April and his death in July.
I am so angry as I feel funding should not have stopped at that stage, borne out by the fact he has since died. I am 78 and not in the best of health and now have all this extra worry. Where do I go from here?

Michelle wetherall October 18, 2020 at 3:44 pm

Hello Kareen,
I feel so angry reading your post! Firstly please accept my sincere condolences on the loss of your husband. I do hope you have family to help you? It's disgraceful that you are now being chased by the care home for fees. Their errors in administration shouldn't be your fault!
I'm not sure how you secured part funding? CHC is fully funded. You should not have paid "the other half of his fees".
Without understanding all of the circumstances of your husband's funding being withdrawn and your complaint/appeal going unanswered, it's difficult to offer any advice, but I would urge you to get help. You could start with making a formal complaint to your CCG and Care home provider about what has happened, detailing that you disagreed with funding being withdrawn in March this year and that you have been awaiting their response. Send them a copy of the care home invoice you have now received.
I would urge you NOT to pay the care home fees until you have exhausted the appeal process.

Ron A Gain October 4, 2020 at 1:56 pm

Great news about the judicial review. I have two questions though.

If CCGs withdraw CHC funding on the basis of a review without having carried out the legally required new full assessment, which a number of people have reported as having occurred, has no-one thought of taking out an injunction to prevent the withdrawal of funding before a decision is reached after the new assessment? Isn't this a feasible option?

What is NHS policy regarding interest on care costs belatedly re-imbursed?

Steve Moxon October 1, 2020 at 12:01 pm

NEWS TODAY: NHS TO BE TAKEN TO JUDICIAL REVIEW OVER NON-FUNDING OF DEMENTIA HEALTHCARE
-- This ought to kick the Government out of its foot-dragging over putting forward recommendations for reform of CHC funding.
Rear Admiral Philip Mathias is to launch a judicial review to force the NHS to pay for elderly patients' long-term health costs. He branded the failure of NHS bosses to pay for patients continuing healthcare (CHC) requirements "one of the biggest public scandals of modern times". The former director of nuclear policy at the Ministry of Defence was inspired by his his own personal long-term battle to recover fees paid to fund his mother's care. "The failure of Government Ministers and senior NHS leadership to take effective correction action is disgraceful and they must be held to account", he said.
"They are responsible for causing emotional distress and financial devastation to many thousands of old, ill and vulnerable people and their families". Calling it the 'best kept secret in the NHS,' Mr Mathias highlighted the legal duty of NHS England to fully fund an individuals care costs through local CCGs if their significant health issues are the main reason they need care.
If successful, the threatened case could force the health service to pay back medical fees in the region of £5 billion. This would make it the biggest legal judgement since the mis-selling of payment protection insurance (PPI), which has become the UK's biggest financial scandal to date. Mr Mathias has launched a Crowd Justice fundraiser to fund the first stage of the judicial review to defeat this 'scandal'. "There is extensive evidence to show that in the last five years, tens of thousands of old, ill and vulnerable people have been unlawfully denied healthcare funding", he wrote on his £30,000 crowdfunding page. "The total level of unlawful financial deprivation is staggering – possibly as high as £5 billion".
Mr Mathias has first hand experience of the issue after being locked in a two year battle with Wiltshire CCG to recover his mother's nursing home fees.
His 90-year-old father shelled out £200,000 to pay for Joy's care when she was legally eligible for CHC because of her dementia diagnosis. "I have personal experience of the dysfunctional and failing NHS Continuing Healthcare (CHC) system", he wrote on his page. "My mother had severe dementia and also suffered from numerous other serious medical conditions. After a gruelling two year battle, the NHS eventually agreed to fund her healthcare. On behalf of those who have been less successful and unlawfully denied CHC funding, I am now taking legal action against the Government and NHS England to expose this scandal and to hold them to account. The aim is to force the Government and NHS England to stop Clinical Commissioning Groups (CCGs) breaking the law and to make sure redress is provided to those who have been unlawfully denied CHC funding".

Michelle wetherall October 2, 2020 at 12:19 pm

This is fantastic news! I've been hoping that Admiral Mathias would launch this challenge.
Having Rear Admiral Mathias spearhead this legal action will force the Government to now listen and be accountable
for the disgraceful way in which CCG's have been operating for too many years.
Everyone should get behind this challenge. With an ageing population and almost 12 million people aged over 65 or above, this should be of concern to every sector of the population as we all live longer with complex health needs that will need nursing/care. I was successful in appeal at IRP for my late father, but I may well be faced with the horrendous process of CHC for my elderly mother in the future, something that I never want to face again.

Michelle wetherall September 19, 2020 at 11:08 am

Thanks CTBD, more good advice in response to questions about paying fees. I have experience of this and from a practical point of view I would advise families to keep all invoices/receipts/statements, if they start paying for care and are in the process of appeal. My late father's funding was withdrawn at 3 months, following the FTT process because he hadn't died!
I successfully appealed the process at IRP, but in the meantime my father's fees were payable. I sensed that appeal process would be protracted and difficult and I decided to have an old fashioned paper trail by paying by cheque bearing my fathers and mothers name! (mum signed them!) The nursing home saw me as being difficult, (they continually asked for direct debit) but this way meant that it generated an invoice and receipt for payment. I also kept all the bank statements for the period as well as the statements generated from the home. It proved valuable when CCG asked for a mountain of evidence to prove my identity (even though I had proved this at every review/appeal) , that my father's fees had been paid. I didn't have to go back to the care home after my father passed away during the process and ask them to provide copies of the invoices. Asking the home to provide copies of care notes previously took months and months of chasing! I didn't need to chase the banks either and pay for additional statements. I had everything I needed to provide evidence immediately. I understand that this isn't going to be practical for many families who have long dispensed with cheque books and use online banking and have been unable to enter care homes during these COVID times. However, I urge families to keep track of bills and payments, it will make life easier should you be successful.
My own CCG required copies:
1. Invoices from the care/nursing home for the late Mr.*,care during the period stated. Please not the CCG are only able to reimburse for periods where evidence has been provided in the form of PAID INVOICES, or INVOICES due for payment where settlement has been delayed as the organisation concerned has been informed that there is a review pending. CCG are unable to reimburse for periods where NO EVIDENCE has been provided.
2. Bank Statement showing the payment made to the care/nursing home for the entire period stated.
Even though I was able to provide all this evidence within 7 days to my CCG. It took 3 months for CCG to make restitution as the calculations for the interest element became contentious.
There begins another story!