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Guidance and support in care funding

Continuing Healthcare redress: what should the NHS pay?

Please note: This article was published prior to January 2024, and some information may be outdated.

What redress should the NHS provide when refunding care fees?

Continuing Healthcare redress - NHS payments when you win your caseWe’re frequently asked the question about Continuing Healthcare redress. It’s also a topic that seems to be rarely explained to families by funding assessors and decision makers. Once a family wins a Continuing Healthcare case, little seems to be mentioned by the NHS about Continuing Healthcare redress.

The deadlines set in 2012 by the Dept. of Health in relation to claiming back care fees wrongly paid led to a surge of claims by families. These families were concerned that their relatives had needlessly lost personal savings and assets to pay for care that the NHS should have paid for instead.

Families report that it’s not easy to apply for NHS funding at the best of times. Our own research shows how the assessment and appeal system is often characterised by maladministration and illegal practice on the part of assessors. The NHS then seems to act as judge and jury over its own shortcomings.

If you’ve had a Continuing Healthcare claim turned down, you may want to double check that the assessors have actually followed the rules. Read whether your Continuing Healthcare claim can be legitimately rejected.

If you’ve succeeded in securing funding, whether for current care needs or retrospectively, the sense of relief can be immense. Then comes the task of actually getting hold of the refund from the NHS.

It’s not just the actual care fees that should be repaid. Interest and additional financial redress may also be relevant.

The guidelines for NHS Continuing Healthcare funding are called the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care. It’s worth having a look at Annex F, paragraph 13, 14, 16, 17 and 18, shown below:

CCG = Clinical Commissioning Group

LA = Local Authority

IRP = Independent Review Panel

Continuing Healthcare redress:

“Where the Board or a CCG has unjustifiably taken longer than 28 days to reach a decision on eligibility for NHS continuing healthcare…

13. Where the Board or a CCG has unreasonably delayed reaching its decision on eligibility for NHS continuing healthcare, and the individual has arranged and paid for services directly during the interim period, the Board or the CCG should make an ex-gratia payment in respect of the period of unreasonable delay.

14. Such payments would need to be made in accordance with the guidance for ex-gratia payments set out in Managing Public Money.  This sets out (in paragraph 4.12.4) that, where public services organisations have caused injustice or hardship, they should provide remedies that, as far as reasonably possible, restore the wronged party to the position that they would have been in had matters been carried out correctly.

Where,  as  a  result  of  an  individual  disputing  an  NHS  continuing  healthcare  eligibility decision, the Board or a CCG has revised its decision…

16. Where:
i) an LA has provided community care services to an individual in circumstances where the Board or a CCG has decided that the individual is not eligible for NHS continuing healthcare, and

ii) the individual disputes the decision that they are not eligible for NHS continuing healthcare and the Board’s or the CCG’s decision is later revised (including where the revised decision is as a result of an IRP recommendation),

the Board or the CCG should refund the LA the costs of the care package. This should be based on the gross care package costs that the LA has incurred from the date of the decision that the individual was not eligible for NHS continuing healthcare (or earlier, if that decision was unreasonably delayed…) until the date that the revised decision comes into effect… Where the LA has collected an assessed charge from the individual, the refund from the Board or the CCG should include interest on that amount so that this can be reimbursed to the individual…

17. Where the Board or a CCG makes such a refund, the LA should refund any financial contributions made to it by the individual (with interest) in the light of the fact that it has been refunded on this basis.

18. Where:
i) no LA has provided community care services to an individual in circumstances where the Board or a CCG has decided that the individual is not eligible for NHS continuing healthcare, and

ii) the individual has arranged and paid for such services him or herself; and

iii) the individual disputes the decision that they are not eligible for NHS continuing healthcare and the Board’s or a CCG’s decision is later revised (including where the revised decision is as a result of an IRP recommendation),

the Board or the CCG should make an ex-gratia payment directly to the individual… An ex-gratia payment would be to remedy any injustice or hardship suffered by the individual as a result of the incorrect decision.”

So if you’ve been successful in securing Continuing Healthcare funding, whether retrospectively or otherwise, make sure you claim the Continuing Healthcare redress you’re entitled to.

If you’ve tried to get redress for your relative, has the NHS complied with the above guidelines in your case?

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33 Comments

33 responses to “Continuing Healthcare redress: what should the NHS pay?”

  1. Does the 28 day rule apply to retrospective claims as well? My Mother had a Checklist Process carried out on 11 March 2014 and we received a letter confirming she was eligible for a full assessment on 25 October 2014.

      • My retrospective claim has taken 5 frustrating years to be told we are eligible for two of the 5 years I claimed for. I now have to find proof of all payments in the way of bank statements and cheque copies , receipts etc which seems to be an impossible task, so goodness knows how much longer it will take..

  2. I should add my Mother passed away in Feb 2011 having been in a care home since March 2004. The checklist determined she was eligible from July 2007.

  3. I learned on Friday that I have been successful in obtaining NHS chc for my husband. It was like taking an A level, and I am indebted to you Angela and to other organisations which have supplied the information I needed to do it. I was particularly inspired by your televised interview in which your determination was matched only by your politeness and refusal to be angered or drawn into blaming anyone.
    As your latest article says, now begins the process of getting the money back. The NHS have offered to backdate it from the date of the assessment, 7th October, but I suspect that it should be backdated to the date when the process of reassessment began,

    • That’s great news, Ann. I’m so pleased for you. And thank you also for your very kind words, including about the TV interview. I’m so glad the information here is helpful, and that you felt encouraged to keep going through the assessment process. Wishing you well getting hold of the funds.

  4. partially sighted in her left eye, constantly in pain, her left leg is tucked up her back, is being fed through a peg feed into her stomache because she cannot swallow, has constant chest infections, she is in and out of hospital and suffers with demencia, has no stability and has to be propped up with cushions. I have been fighting for continuing healthcare funding for years and just can’t get it. My mothers nursing home fees so far have come to £300,000. Do not know what to do next, any sugestions…

    • Catherine: Don’t give up. My mum is like yours, except she’s able to swallow soft/puree foods, but is at risk of choking. I have just won CHC at local appeal after 18 months fighting, so if she is eligible, your mum is!! I’m in South Bucks, although this should not make a difference as the framework is SUPPOSED to be National. Get your MP on board, stand your ground, make sure you know the facts and get your own evidence from the hospitals, GP etc. Then carefully score against the DST. Be ready to argue your case at the MDT meeting (ensure it really is MDT – ours was not, but when I pointed that out they had to admit to that failing!). Above all, keep going. From what you say, you do have a case, but like me, you will have to show you are not just going to ‘give up and go away’. All the best to you.

      • Hi Sara, Good news.

        However My (Alzheimer’s) mum’s MP wont act on her behalf because I have made contact on my own behalf to my MP????? I do know that he is a personal friend of the local Commissioning Support Unit… Make of that what you will.

        October last year. My father in law had his CHC discontinued. Just the NHS was present. They deny that it was not a full MDT…… Apparently a team can now consist of 1 person. That should make football a lot cheaper then!

        I just got the bill from the council for my father in law’s contribution. We will not pay it until all appeals are finished. We are still waiting for Independent Review. Many other things are also involved in both cases. But I would reinforce your comments to keep at it.

        • Further to the last.
          I recently got a letter from the “special projects manager” at the county council. She wanted the almost £15,000 generated in the last 12 months since a single NHS assessor (no county council attendance), recommended stopping my father in law’s CHC funding.

          I went through the whole thing with her and she seemed genuinely shocked that she was trying to obtain money that cannot possibly be due because the funding was withdrawn unlawfully.

          The classic was when I asked her if social workers were responsible for disease prevention or were the NHS.

          For more than five weeks this year alone my father in law’s nursing home of 50+ beds was locked down due to outbreaks of c-difficile and norovirus……… Every resident immediately became NHS patients but those not CHC funded continued to pay for their healthcare.

          At circa £700.00 a week there is a potential saving to the NHS of £175,000 over this period with the slack being taken up by residents and the county council taxpayer.

          My mother’s 50+ bed nursing home was also shut down for three weeks this year too.

          She understood that this argument would also be made when she eventually takes my father in law to court for the alleged debt.

  5. Hi Chris-G,
    Just been back on here and seen your comment about the single person MDT. Yes that is what we originally had – just one Nurse Assessor who had never before met my mum. The Local Appeals Panel admitted that this was wrong when we started with this as our first point for appealing on the grounds of an flawed and illegal assessment.

    I can see from your comments that, l like me you will not be pushed around (I too refused to pay anything until the Care Home threatened to evict my mum who was confused enough with her dementia). I then paid the amount I calculated she would be liable for IF CHC was eventually not given; I disagreed with the Council’s figures and sent them a spreadsheet with my calculations – they never managed to check them but as far as I can tell just breathed a sigh of relief when let off the hook by the CHC decision being overturned!!

    I don’t think I need to refer you to the relevant parts of the Framework that specifies the correct formation of an MDT as I suspect you know them better than I do, but if you are in need of the page numbers just ask!

    I raised the question of how CHC assessments are being processed with the Health Minister and had a lovely reply telling me I needed to address the issue to the local CCG – wonder who he thought I’d been corresponding with for the last 18 months?

    Keep fighting Chris, and everyone else. Maybe, just maybe, we can not only win our own cases, but educate someone within the NHS along the way. Good luck all.

    • We often hear from families who have had assessments with single assessors calling themselves a multidisciplinary team – and of course without the essential contribution/presence of the local authority. It’s a fundamental – and very obvious – flaw, and yet many CCGs continue to act in deliberate breach of the guidelines and the law.

  6. I have been battling since Sept 2012 to try and get care home fees refunded retrospectively.
    Mother in law died 2007 and as she had advanced Alzeimers was never properly assessed and we paid over £55,000 her entire life savings.
    I have been very pushy with the NHS “so called retrospective team ” dealing with this, have provided them with medical records, hospital records and nursing home records.
    I now have a meeting in a few days with DST ………. any tips or advice would be very welcome.

  7. Hi,
    I was successful in being awarded retrospective redress for my late Uncle. I grew up with them and he was as good as a father to me . I was awarded redress from Aug 2006 to Oct 2009 plus interest up to the present day . The local health board were notified of this in early March and its now the 9th May and i’m still no closer to getting closure. For some reason i kept every single nursing home receipt so the redress calculation is a simple one . Whenever i speak to a member of staff from finance i’m given a different excuse . More so than the money its about closure for me . I was forced to sell my family home , i had to burn family memories that i had no room to keep – and whats worse than that is i now know i didn’t need to . The choice of being able to live (as was my uncles wish) in my family home was taken from me . I had to watch him waste away slowly until he was skin and bone – and then over 6 yrs later i have to read about it . By delaying the payment it feels like one last twist of the knife . I just wanted to know is there anything i can do to make them pay me to have an end to this stress ? . I feel i failed my uncle once in losing his home by not knowing about CHC -i don’t want to fail again .

    Thanks.

  8. My case is similar to Continuing Healthcare Redress’ point 18.i/ii/iii above. Almost 4 years of maladministration, unnecessary delays and incorrect application of the guidelines has caused a great deal of stress and anguish. Recently, an IRP overturned an earlier decision, ruling that my mother (who, sadly, passed away during this lumbering bureaucratic process) WAS eligible for NHS CHC retrospectively. Could you just clarify please… am I right in thinking that IN ADDITION to the simple ‘reimbursement’ of funds spent by my mother on her care home fees, we should ALSO request ‘redress’/’compensation’ in the form of ‘an ex-gratia payment… to remedy any injustice or hardship suffered by the individual as a result of the incorrect decision”? Are they two separate things? Thanks for your help.

    Reading all the horror stories of your other readers, I have total sympathy. All I would say to them is, like us, keep pushing, provide all the evidence possible, look in detail and the legal aspects of NHS CHC, argue your case that your loved ones were paying care fees for HEALTH reasons with conviction, and it will come eventually! Many NHS CHC decisions are made on the NHS’s interpretation of how cases should be assessed and NOT on the LEGAL guidelines and precedents. Good luck, all!

  9. We had an assessment in 2013 and it took 5 months for the decision that we were not eligible. We have had another assessment this year and we have been granted Continuing Healthcare. I asked our social worker about redress and she said she had never heard of it. I am just starting to ask questions about it now and it seems no one can tell me why redress wasn’t spoken about in this year’s assessment and I now have to go through an appeals procedure!

    • Joanne – sadly it’s not unusual that people working in the care system itself don’t understand the rules. Be sure to check out the link in my response to David above.

  10. My sister and I are expecting a refund but the LEA have rejected interest payments, here is what they said.

    I can now confirm that the refund of £16,908.53 was raised in yesterday’s BACS run and will hit your account on Wednesday 2 November.

    I have also received confirmation that the interest was considered jointly by ******** Council and ******** CCG at the resource allocation panel on 17 October 2016 and was rejected. If you wish to appeal this decision, you will need to contact the CCG direct.

    I didn’t think interest payments were optional?

  11. We have been awarded retrospective care home fees for my late mother in law
    Now we have to find out how much she paid but can’t get any records from care home or bank as it was in 2005/6 and they do not keep records for longer than 7 years
    What happens now it feels like it’s just another mountain to climb should they not be doing all of this?

  12. After 8 years of fighting for CHC for my Mother, I have finally won the claim after an independent review panel found in our favour. Sadly my Mother passed away several years before the claim reached it’s conclusion.
    Because she not in receipt of CHC funding, she was awarded attendance allowance. The CCG are now deducting the figure for attendance allowance from the total they are paying back into my late mother’s estate. I have heard that as the payment of AA was a due payment at the time, it is not legally recoverable. Has anyone got any information on this matter?.

    • Hi Dave – are you represented or are you pursuing this alone? No this should not be deducted. The guidance is clear on this. Kind regards

      • Thank you for your reply. You mention the guidance is clear . Can you please tell me which particular publication I can refer to.
        I’m not represented at the moment , but have already asked the PCT to keep the file live as I may be challenging their decision to recover AA.

        • Hi David – this is old but current guidance contained within a publication called ‘Retrospective continuing care funding and redress’ from PHSO dated March 2007 at para 22 which says ‘The Department reached a national agreement with the Department for Work and Pensions that social security benefits would not be reclaimed from individuals where overpayments had been made…’ Please do get in touch with us direct if you would like us to send you a copy of the guidance as it is not easily located on line. Kind regards

    • My late Mother has been awarded continuing healthcare funding on a retrospective claim. This had taken six and a half years. The period of the award is from Dec 2009 until April 2013. I am confused as to the amount of interest that is payable on the amount to be refunded in view of the April 2015 amendment which states it is based on the retail price index and also the period this interest is calculated as the decision following an IRP was only made in February 2020. Any advice would be greatly appreciated.

  13. Please note that in the revised 2018 version of the National Framework, the section quoted above has now become Annex E.

  14. I was engaged in a long drawn out case related to my late mother’s care which dated back to 2009. The CCG finally agreed that my mother should have been awarded CHC funding for the entire period she was in residential care in 2019. However, they deducted more than £13,200 (£10,600 plus interest) from the care fees settlement.

    From what you say, it looks like they shouldn’t have done that. Would I be able to claim that back nearly two years after they paid out?

    • Sorry, I meant to say that the CCG deducted £13,200 (£10,600 plus interest) from the care fees settlement for Attendance Allowance that my mother received whilst she was in care. She wasn’t receiving CHC funding at the time so it was correctly paid.

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