NHS Continuing Care: Why the new deadlines for reclaiming care fees are illegal (Part 1)

NHS Continuing Care: Why the new deadlines for reclaiming care fees are illegal (Part 1)

Today’s article is a response to the recent announcement that, after September 2012, most elderly people in care in England will no longer have proper financial redress for wrongly charged care fees.

I remember it vividly. Sitting at the bottom of the stairs just after Christmas 2007, I opened the letter. As I read it, I began to sob. They were hard and heavy tears. I had been fighting for this letter for so long and now it finally confirmed that the NHS had acted illegally in charging my mother for care.

It also confirmed that the NHS would be issuing a refund of care fees and providing ongoing funding to cover all her care needs. It had been a ghastly battle – and at that point I was also in the middle of the same battle for my father.

20 years earlier they had both been diagnosed with Parkinson’s disease. They both subsequently developed dementia and other serious health conditions, they both went into a care home on the same day in 2005, and they both died within a few weeks of each other at the end of 2009.

My battle with the NHS for both of them took over three and a half years and left me utterly exhausted. I eventually succeeded in forcing the NHS to pay back over £105,000 in care fees and provide fully-funded Continuing Care for my parents right up until they died.

NHS funding for full-time care is called NHS Continuing Healthcare and it covers 100% of the costs of being in a care home or receiving full-time care at home for people whose needs are primarily health needs.

I’m not talking here about the current crisis in social care, which is bad enough in itself. This is about NHS care – the healthcare that is available to all of us because we live in the UK. Except, it seems, if you’re old.

In the UK healthcare/nursing care is free at the point of use. It is not based on ability to pay, and yet elderly people in full-time care are routinely told the opposite: that even though they may have health needs, they have to pay for their care.

It is one of the biggest scandals in health service provision, accounting for billions in lost personal assets, and it has been going on for years. But the most horrifying thing of all is that it is not just a small hole in the care system; instead, it is a massive unfairness that seems to be actively perpetuated and supported by the State. Successive governments have done little to stop it..

I believe this maladministration has and will directly affect every family in the UK, and it will continue unless the voices raised in protest continue to grow in strength and volume.

Breaking the law as routine
The whole Continuing Care application, appeal and review process is controlled by the very people who hold the purse strings, and that simply cannot be right. In my parents’ case, and in the case of tens of thousands of other families, the NHS seems to break the rules as routine – as a way of making people fight for the care they’re legally entitled to and most probably in the hope that those families will simply give up and go away.

Generally speaking, in the UK, no matter how old you are, if you need health care or nursing care, you do not have to pay for it.

The National Health Service Act 1946 outlined this clearly, as did the 2006 National Health Services Act. This has not changed. Indeed, the coalition government was at pains to point out that the new Health and Social Care Act 2012 also preserves it.

The law states that the Secretary of State has a statutory duty to promote a comprehensive health service, and the services provided must be free of charge. If the essence of the law is not being followed – to promote and provide health services, the government and the Secretary of State are answerable.

Despite this, a complex web of financially-motivated Continuing Care assessments and eligibility criteria has been fabricated for elderly people who need full time care – and this has wrongly been in place for many years. This assessment framework does not override case law, and yet NHS ‘assessors’ and decision making panels seem to take on the role of judge and jury, when in fact the principle of healthcare free at the point of use has never changed.

Most of us have no reason to understand the ins and outs of the care funding system – until that need is thrust upon us by an elderly relative needing care. Most of us also assume we can trust the health and social care authorities to tell us the truth about paying for care. Sadly, what we often seem to be told is far from the truth. It means when an elderly person goes into a care home, families don’t realise that the first priority is NHS funding – not questions about their money, property and savings.

This ‘oversight’ of the part of the authorities means that hundreds of thousands of elderly people have been illegally railroaded into selling their homes and everything they own to pay for care that should have been provided by the NHS – just as it is for other people in the UK. It is age discrimination on a massive scale. The press, too, in articles about care fees, rarely mention NHS Continuing Care funding, which further perpetuates the myth that when you grow old you have to pay for care.

Part 2 – How a vital landmark test case in Continuing Care is now being ignored – and illegal deadlines imposed on financial redress.

Read the whole article


  1. Sara mouatt 2 years ago

    I have waited five and a half years from the NHS on my late mother’s case study to inform me that my she as not entitled to any refund on her retrospective Continuing Healthcare whilst she was in a nursing home for the year she was there. I have on several occasions have rejected their report. Care homes only hold records for up to 6 months from when they pass away. I have had a phone call from them to say that she was entitled to £155 a week credit on the payments that were made but they are not sticking to their word. I’m fighting this due to the time it has taken and any refund to be given to her grandchildren. Question no one has given a percentage to how many people made claims to how many got paid out. NHS is struggling but also ripping off families. What’s your response on this.

  2. Barbara 2 years ago

    Could you please help me? My Dad died in 2016 in hospital but his place of residence was a nursing home. As of yet we have not received his final care bill as he was self funded. Do you know how long following a residents death that the care home legally have to claim the fees?

  3. Thomas Rayner 4 years ago

    My Uncle suffered repeated Angina Attacks and was run from pillar to post by medical people etc. In the end We had to get him in respsite care that is now full time care in a residential nursing home , the Social worker was not up to the job and after along period of messing my Uncle about applied for funding , My Uncle was not accessed by NHS for continuing care , only by the care home mananger whom the council accepted her finding she was initially refused funding from local council but when challenged that they had not been lawful in paying attention to the wishes of my Uncle they agreed to pay funding but my Uncle has to pay from his pension to cover rest and he is left with £15 per week he will loose his £73 pension credit after 12 months , We find now he is very settled and does not wish to move , Do you think the NHS should be covering his funding , considering his revolving door exprience with hospital treatments , We found he has a parasite consuming has magnesium and damaging blood cells causing blood clots and has a NHS nurse to make sure he gets his warfarin due to poor memory to prevent heart attacks, He is also unde a psychiarist due to consequencial emotional problems

    • Care To Be Different 4 years ago

      Thomas – if your uncle has never been assessed for Continuing Healthcare, this should happen right away. At the moment, the local authority may be in an illegal position by effectively taking responsibility for care that the NHS could have a legal duty to pay instead. I can’t say whether or not your uncle would be successful in the Continuing Healthcare assessment, but he should most certainly be assessed. Be sure to complain about the process not having taken place before. This may also help you: http://caretobedifferent.co.uk/getting-the-nhs-continuing-healthcare-assessment-process-started/

  4. Olivia 4 years ago

    My grandmother paid for her care up until she passed away in 2014, I only recently became aware of this process. I was wondering who I might apply to get her case reviewed? Do I write to the health board or is there are specific team/individual who can review her case?

    • Care To Be Different 4 years ago

      Olivia – you mention ‘health board’. Was your grandmother in England or in another part of the UK?

  5. Care To Be Different 6 years ago

    Hi Daisy – the same would apply as in my other comment above, and it shouldn’t matter whether or not the person has died. The validity of any individual claim – and the likelihood of success – depends of course on the specific circumstances and details in that individual case.

  6. Daisy 6 years ago

    Is it possible to make a claim after the deadline when the person has since died?

  7. Angela 6 years ago

    If the deadline was missed because of the incompetence. delay, lack of information, obstruction or other such actions (or inaction) on the part of the health and social care authorities, it’s worth pursuing.

  8. Paul Fisher 6 years ago

    Hi Angela, I was very interested in your comments above. I have been pursuing the NHS for over 18 months for a re-assessment. We missed the deadline by a month and I’m disgusted that we only had a 6 month window to be able to have the assessment completed. My next move is go to the ombudsman but I don’t hold out much hope. I wondered whether you have had any experience of anybody having an assessment outside of the deadline. Thanks.

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