We’re often asked who should pay for care when the NHS has refused to provide Continuing Care funding and the family is going through an appeal.

It can help to have some key points to argue if you’re in this position and your relative is told to start paying care fees. The information we’ve included here has already helped families avoid paying for care through appeal – and it may help you too.

Once the NHS has made a decision that the person needing care is ‘ineligible’ for Continuing Care funding, the assessors will say that the person must now start paying care fees.

However, many people find this highly questionable – especially as the original funding assessment will often have been done without full regard to Dept of Health guidelines and it will often have involved maladministration on the part of the NHS.

However, if you suggest to the NHS that it should pay for care while you appeal their decision, you may be asked to show the assessors exactly where in the National Framework for NHS Continuing Healthcare it states that they should. (The National Framework is the document that outlines the formal Dept of Health guidelines governing Continuing Care assessments.)

However, the answer won’t be found in the National Framework in isolation; the NHS’s responsibility for continuing to pay for care during an appeal is supported by a principle that is actually far more powerful than any single clause in the National Framework.

The principle of continued NHS funding is supported in the law that covers free nursing care and free healthcare in the UK. Indeed, legal opinion from the well-known Coughlan case suggests that the National Framework itself is seriously flawed, if not illegal, because it does not match the principle of free healthcare available to all.

It’s not surprising that health and social care employees ask the question about the National Framework though. Many people working in health and social care and involved in Continuing Care assessments and reviews are not familiar with the law and the legal framework in which they operate. Some are not even familiar with the National Framework, or with the Practice Guidance for Continuing Care. Feedback from families suggests that many assessors do not look beyond the ‘tick list’ approach of current Continuing Care assessments and clauses in the National Framework – if they even look that far.

The National Framework and the whole assessment paraphernalia surround Continuing Care would appear to be financially motivated, and yet budgetary concerns should never be a part of any decision about Continuing Care funding.

In addition, nowhere do the Continuing Care guidelines – or the law – give the NHS permission to force someone to pay for care when a funding decision is unsafe, and then make them fight to get the money back retrospectively.

Nor do the guidelines state that you have to start paying for healthcare before a proper decision has even been made – and by proper we mean where everything is thorough and above board, and has been done entirely in accordance with the guidelines.

Being asked to pay before this has happened goes against all principles of state healthcare provision in the UK.

The only way it can be decided who should pay for care at any given time is for the proper and full Continuing Care assessment process to have been carried out.

Any assessment carried out without full adherence to the guidelines – which means not following the proper process in all respects and/or not taking into account all health needs and risks, including those likely to emerge or worsen in the coming months – is neither a proper nor a full Continuing Care assessment, and does not form any safe basis for a decision about funding.

It is therefore inappropriate for the NHS to tell you to pay for care before this process has been properly followed. They cannot possibly find your relative ‘ineligible’ without doing this.

In part 2 we’ll look at some additional things to do when you’re faced with this situation.

Applying for Continuing Care? Explore our helpful step-by-step guide.

Many people needing an assessment for NHS Continuing Healthcare – or who are waiting for a Continuing Care appeal – are experiencing long delays in getting this done. It can be exasperating for families. And, in the meantime, their elderly relatives in care may be (wrongly) means tested and told to start paying care fees.

How long have you been waiting?

The health and social care authorities tend to put the onus on families to find out about care fees funding in the first place and many families are left in the dark about NHS Continuing Care funding. Then the authorities leave it up to families to chase proper assessments, pick up on maladministration in the assessment process and raise objections when care fees are imposed illegally. It causes a huge amount of anger and distress for families.

Retrospective claims

If you’ve lodged a retrospective claim for NHS Continuing Care  with the NHS to reclaim care fees already paid, the chances are you’re still waiting to receive even an acknowledgement of that application. You may not have had any replies to your phone calls or letters. This lack of communication is unacceptable behaviour for any organisation, let alone one with responsibility for vulnerable people.

Keep chasing your claim with the relevant NHS Continuing Care Dept. Let them know you’re not going to go away and that you need to be kept informed of timescales for reviewing your claim. In our experience of the whole Continuing Care process, you often have to make a nuisance of yourself to get a response.

The Continuing Care Dept may say that they have a backlog of claims to deal with, but this is no excuse for not providing you with any information at all about when they’re likely to look at yours.

Current Continuing Care assessments

If you’re waiting for a Checklist assessment  and you’re told by the Continuing Care Dept that it will take weeks or even months to get this done, this could well be an attempt to get you to start paying care fees.

The NHS may be short staffed, but a Checklist assessment can be carried out by any health or social care professional who understands the process, e.g. an informed care home manager, a social worker, a community psychiatric nurse, a district nurse, a GP (although many GPs are unaware of the process), or another health or social care practitioner who knows your relative’s health and care needs. It is a relatively short assessment and should certainly not take months to get done.

If you’re getting no response from the NHS itself, ask a health or social care professional directly to carry out the Checklist and send it to the NHS Continuing Care Dept local to your relative. Talk to the GP as well, and raise your concerns.

If you’re waiting for a full Continuing Care assessment (Decision Support Tool),  and you’re getting no response, keep sending letters to the NHS Continuing Care Dept.

Many people also find it helpful to get the local MP involved too, and to copy in the MP on all correspondence. Find your local MP here.

The full assessment should take place – and a decision made about funding – within 28 days of the Checklist assessment.

Continuing Care assessments in hospital

If your relative is in hospital and you’re being told they’ll be assessed once they’ve left hospital, be cautious. Read these 5 things to check before your relative is discharged from hospital.

If your relative is likely to show significant improvement in the short-term, the NHS may provide short-term rehab or reablement care, and so may wait until your relative’s actual care needs are clearer before it does an assessment. However, if your relative’s condition is unlikely to improve in the short term, a Continuing Care assessment should be carried out before they are discharged.

Continuing Care appeals and review

If you’re challenging or appealing a decision about Continuing Care funding and you’d like a review – or if you’re waiting for an Independent Review at the Strategic Health Authority – there are specific timescales in which this should take place. Read more about Continuing Care review timescales.

Always remember, it is not correct for the NHS to expect people to pay for care while waiting for an assessment. If this were the case, it would give the NHS carte blanche to delay assessments indefinitely. For that reason, at Care To Be Different we often recommend that families dig their heels in and refuse to start paying care fees until the proper assessment process has been followed – to allow a proper decision to be reached about who is actually responsible for paying for care.

Any health or social care professional who tells you otherwise – or who simply says there’s “no point” doing an assessment because “you won’t qualify” – may be trying to get you to pay for care under false pretences.

How long have you been waiting for a Continuing Care assessment or review? Leave a comment below.

The founder of Care To Be Different, explains how her stubborn streak helped her secure fully-funded NHS care for her parents – and why she set up Care To Be Different as a result…

“I was never a natural when it came to standing up to authority – until 2005 when both of my parents went into full-time care and I found myself face to face with the NHS.

“My parents both had the same illnesses (advanced Parkinson’s disease and dementia for starters), both needed care, both went into a care home on the same day, both were illegally charged for care (which cost them their home and everything they’d worked for) – and they both subsequently died within a few weeks of each other four and a half years later.

“To say that I was shell-shocked after that would be an understatement. It was a harrowing experience – yet one I know is also shared by tens of thousands of other people across the country.

“At the start I knew nothing about the care funding system or the Continuing Care funding criteria and I, like many other people, simply assumed that because my parents had a house and some savings they’d have to pay for care. After all, that’s what the health and social care authorities tell us, isn’t it?

“I soon realised, however, that this is in fact not the case. I started reading about Pamela Coughlan and the now well-known Coughlan case at the Court of Appeal, and the Grogan case, and began to realise my parents’ care fees were in fact illegal and that they should be receiving NHS Continuing Care funding to cover all their care fees.

“I started exploring what actual assessments had been done for my parents when they went into care, and I was shocked at what I found. The process was a mess – and highly questionable: Assessments had either not been done properly or not at all; in my mother’s case the NHS asked my father (who had dementia) to sign paperwork that was then used to deny her funding; I had been kept out of the loop (despite holding a power of attorney); I’d been given incorrect information; and key health needs had been completely disregarded. When I arranged for reassessments to be done I experienced verbal intimidation by one assessor and blatant misstatements of fact by another.

“Back then very few organisations, including the big charities, seemed to have even heard of Continuing Care, let alone be in a position to help me fight my parents’ corner. But, despite people in the care system being unwilling or unable to help me, I did a ton of research and started delving into the dark recesses of Continuing Care maladministration. I had no idea how to prepare for Continuing Care assessments, but I was going to find out. The local authority told me their files would now be closed and the care home management was appalling in its indifference. I felt utterly alone. I realised it was going to take all the energy I could muster to fight this.

“I’m Taurus, and we are (apparently) relentlessly persistent and determined, but also annoyingly stubborn and inflexible. I now count all those traits as blessings. My battle for Continuing Care for both of my parents took three and a half years and left me exhausted – not least because of the 250 mile round trip each time I visited them or attended any meetings, but also because I was a self-employed writer at the time and keeping a business afloat.

“And, of course, at the centre of it all were two people I loved who were dying. My father had developed kidney cancer and my mother had several strokes.

“My parents ran out of money, and the care home came after me personally for funds. It is, of course, not the family’s responsibility to pay care fees in this situation; instead, it’s up to the local authority. I realised how easy it is to be taken in by what the various care authorities tell you. But I was having none of it. I was incensed at what the State had put us though – and at what it was still trying to do.

“My mother’s case went all the way to a Strategic Health Authority tribunal. I learned so much about the care system during that time, how to counter what the NHS was saying, how to back up my case from a legal point of view, how to challenge the misinformation and appalling lack of knowledge on the part of the assessors, how to put the NHS on the back foot in an assessment and how to write a powerful appeal.

“I won my mother’s case, and I repeated similar arguments in my father’s case, using the same process, the same research and the same strategies to challenge everything. Eventually I won his case too. The NHS was forced to repay care fees and provide Continuing Care funding on an ongoing basis.

“I believe Continuing Care is one of the biggest scandals in elderly care in the UK. After my parents died, I realised that my experience and knowledge would be valuable to other families, and that’s why I set up Care To Be Different. I also knew that I could do things a lot more quickly for clients – and that I could make the process easier for them.

“Plus, I understood the tears, pain and anguish that families go through and how important it is to have someone on your side who is not simply helping from theoretical knowledge, but who has ‘been there and done it’ and who understands the ins and outs of the system. I also wanted to put a lot of my knowledge together in a format that families could access easily; the e-guide, ‘How To Get The NHS To Pay For Care’, has now proved valuable in helping many clients successfully obtain Continuing Care funding.

“My message to anyone who has an elderly relative in care and paying care fees is simple: challenge everything you’re told and don’t take no for an answer.

The NHS was set up to provide healthcare and nursing care free of charge at the point of use. That hasn’t changed – it’s enacted in law – and just because someone is old and in a care home doesn’t mean the authorities can change the rules.”

Read more about Continuing Healthcare and how to get assessed.