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 However, if you genuinely believe that your relative has had their funding incorrectly withdrawn or wrongly declined, then consider whether there were any flaws in the CHC process or if the eligibility criteria were incorrectly applied.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 1st 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 1st 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 11th 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:
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…