NHS Continuing Care review process – new timescales

NHS Continuing Care review process – new timescales

New review timescales for Continuing Care reviews after 1st April 2012

Magnifying-glassNHS Continuing Care is NHS funding and it covers 100% of the costs of full-time care in a care home or at home.

It’s available to people who need full-time care primarily for health reasons. Sadly, many elderly people are wrongly charged care fees when they should have been receiving this NHS funding all along.

You can reclaim care fees that have been wrongly charged. HOWEVER… the Department of Health has imposed new deadlines for retrospective care fees claims in England – and it has also introduced new timescales for reviews of current Continuing Care eligibility decisions.

Current Continuing Care reviews

If you’re applying for NHS Continuing Care funding for a period of care from 1st April 2012 onwards, and you’re found to be ineligible for funding, you can ask for a review.

Follow the steps below…

If you disagree with a decision made by the local Clinical Commissioning Group (CCG) to deny Continuing Care funding:

  • You have 6 months* to notify the local CCG that you disagree with their decision and that you’re requesting a review
  • The CCG has 5 days to acknowledge in writing that it has received your request – and it must also provide you with information on the Continuing Care appeal process
  • The local CCG must deal with your request, complete a review and make a further eligibility decision within 3 months of receiving your initial request for review. If there’s a delay, the CCG must inform you in writing explaining why. It could be because they can’t access the relevant care records in time or they can’t pull together an appropriate multi-disciplinary team to carry out the review.

If you miss the initial 6 month deadline, but you have a good reason, you may still be able to get your case reviewed, as long as it’s still possible for the CCG to access all the relevant care records, etc.

If the CCG still denies funding and you still disagree:

  • You can contact NHS England and request an Independent Review Panel (IRP) hearing; you should do this within 6 months* of the CCG’s earlier decision
  • The Independent Review should be conducted within 3 months – unless it’s found that the CCG’s previous assessment for Continuing Care was not done properly OR the members of the Review Panel are not available OR the Review Panel can’t get hold of the care records in time OR you request a delay yourself due to unforeseen circumstances
  • You should receive the Independent Review Panel’s funding decision within 6 weeks – and the letter you receive must give you information on how to contact the Parliamentary Health Service Ombudsman if you’re still not happy

If you are still denied funding after the IRP hearing:

  • You have 12 months* to contact the Parliamentary Health Service Ombudsman to take your case further.

* from the date you were notified of the decision

The CCG is responsible for informing you about the review/appeal process for Continuing Care – and it must do this at the same time as it informs you of its Continuing Care eligibility decision.

Retrospective Continuing Care reviews

The Dept of Health has also issued deadlines for retrospective Continuing Care claims in England – for periods of care from 1st April 2004 to 31st March 2012. Find out more.

Read more about NHS Continuing Care funding – it can save you losing your home to pay for care.

149 Comments

  1. Linda Rickwood 1 year ago

    We have been told that, if we wish to claim Retrospective Funding from 2012 we have to submit another claim as it is deemed to be a Legact Claim. Our original claim was made within the guidelines and within time and my response was that, when our claim was received, the CCG should have then carried out a Decision Support Tool for current funding therefore it’s their fault and we should not have to make a second claim. Can anyone clarify this point for me please!

    • Sue Risbridger 11 months ago

      Just had annual review for mum’s NHS Continuing Care. Last year she was funded , Decision Support Tool (DST) 1 severe, 4 high, 2 mod, 3 low and 1 no need. This year the DST was 1 severe, 5 high, 3 mod, 1 low and 1 no need the assessor has recommended mum is social. Although the assessment was flawed we were not present when she spoke the matron of the nursing home about ‘Nature, Complexity, Intensity and Unpredictability (mum has latter stage dementia following a severe stroke so I represent my mum) also she did not give her recommendation at end of meeting; she phoned my sister 3 days later and also said she had passed it on to her manager to decide!!! We now have to attend another meeting at the nursing home with a social worker present. I can only assume she wants social worker to agree so she can withdraw funding, is this meeting normal as I thought you had to do an appeal if you disagreed with outcome? Can anyone help with this please.

      • Sue 10 months ago

        I had a similar position with my father when they carried out a Decision Support Tool without me present. I had PoA for my father, a fact well known. They immediately said the same as you have been told, we will do another one, with you present. I then insisted that the ‘first’ assessment be struck from the records and that such a comment be recorded. It made no difference to the outcome however. In fact they actually said he was showing improvement in mobility whilst at the same time marking him high for mobility risks! (by the way, this comment followed a fall where he had broken his hip!!). I immediately lodged an appeal for that and other points. My father had his funding removed after two years of such funding. He died a couple of weeks ago but I will pursue the appeal regardless.

  2. Jo 1 year ago

    We have just received letter from CCG confirming mother-in-law’s ineligibility for NHS Continuing Healthcare and they have given us 14 days to respond in writing. Is that right? I have already drafted an appeal letter after the Multidisciplinary Team (MDT) meeting, as we knew which way it was going, but since NHS have fallen way behind on their recommended timeframe – Checklist completed on 17th August – we think it’s a bit rich that we have only 14 days!

  3. steph 2 years ago

    Hi have recently been turned down for Continuing Healthcare (CHC) funding but allocated Funded Nursing Care (FNC) – my father is still in hospital and I cannot find a nursing home to take him as his needs are greater than they can provide on FNC? any ideas, I am refusing to let him leave hospital until I have a repeat full assessment meeting as he needs funding to keep him safe? – any suggestions

  4. Andrea White 2 years ago

    I am preparing for the Local Dispute Resolution (LDR) meeting due to take place one year after lodging my Notice of Dissatisfaction. I note that the regulations state that I should have had 6 months in which to lodge my dissatisfaction, but they only gave me 30 days in which to raise my dissatisfaction within 30 days they will consider the outcome to have been acceptable. I think you can imagine my panic to get the submission in on time. They would not release my Mother’s medical records – the originals have now been destroyed – because I was not the original owner of the records. It was I who gave the CCG power to access my late Mothers’ records. Going through everything now, I find that there several other areas that I could have objected to with a valid rationale. I suspect that this meeting will only serve to allow the CCG to stand by their original decision to refuse my application, but I wonder if I can bring up additional items of dispute when I appeal to NHS England – which I will definitely do. In September 2012, everything sounded so simple and straight forward – ‘the Government has accepted that dementia is a medical condition and as such qualifies for NHS funding’. How many millions of pounds have been spent by CCgs and the NHS refusing to pay what should have rightfully been paid. Will the LDR purely concentrate on the objections that I raised, thus making it a whitewash? They won’t give me any information about the review or its findings so will be going completely in the dark. I think I may have quite a case to take to the Ombudsman already. Wish me luck.

    • Andrea White 2 years ago

      Well – no surprises this afternoon. My Notice of Dissatisfaction has been rejected on all counts – blow the idea of common sense and probability. e.g. if she was doubly incontinent in 2007 it’s pretty safe to assume she was still doubly incontinent in 2008 and 2009, but there was no ‘clinical evidence’ to support 2008 and 2009. Along with thousands of other claimants – the care home records were miraculously destroyed by an alleged flood in the basement. Several grounds on which to sue the home, but it’s changed hands. Thought I hasten to add that my mother did have excellent care.
      Absolutely gutted at reliving my beautiful Mum’s last devastating years.
      But I won’t give up

  5. Judy 2 years ago

    We are progressing a retrospective review from April 2012 and after 18 months had a Decision Support Tool (DST) and Multidisciplinary Team (MDT) meeting which denied Continuing Healthcare (CHC) for which we appealed. We are still waiting 13 weeks from the local review panel meeting yet we were told it would be only be 8 weeks wait. How can we progress to Independent Review Panel (IRP) if we still haven’t got the result of the local meeting?? The excuses from the CCG are “The lead nurse is currently preparing the panel report but this has proven to take longer than the 6-8 weeks advised at the meeting, as time is required to consider all of the comments you provided” and also that some members of the panel are sick, on leave etc. We wonder whether we should now just issue a County Court claim as the arbitration process as clearly broken down in our case and it should be put to the judge that the long delays are not either acceptable or reasonable.

  6. Ja 2 years ago

    I finally heard from the CCG, via the NHS complaints department, and after initially refusing a retrospective review they have now agreed to one – only took 8 months! As I haven’t got all of my dad’s social services records I emailed asking for copies and although they have them, I have been refused on the basis that they are my dad’s personal records. I informed them that I had power of attorney whilst he was alive, that I am the next of kin, and that I am the executor of his will.
    Does anyone know the legal position regarding this? Every other health body has copied them without any problem once they had seen the will.
    Thanks for any help with this.

    • Ja 2 years ago

      Heard back after I challenged them and they have agreed they may have got it wrong and are passing it on to the relevant person.

  7. Rose Flynn 2 years ago

    Hi – I have found your book and forums invaluable. I am at the stage now that I have been turned down at local and IRP and decided to take my Dad’s case to the Ombudsman. My Dad had Dementia went into care for 2 weeks respite but remained there for 2 years. I have pulled apart all the CHC failings with a fine tooth comb to the point that they have admitted a flawed process but have come out with the same answers of well managed needs etc and I have backed everything up with well managed needs are still needs etc. I work as a Practice Nurse and cannot believe I am not getting anywhere with my medical knowledge. I decided to try to challenge procedure as well as domains., which has been said they are satisfied with answers to both decisions from local and IRP. Absolutely devastated. Despite 10 months nursing notes missing (Breach of information Governance issue as well)
    The reply from the Ombudsman when I have challenged procedure bearing in mind My Dad was in an EMI home he got hurt by another resident and they could not offer him a nursing bed on another flour due to bed blocking. I requested further CHC review as they had never been to reasses after 15 months when he was refused it. Checklist was completed, Nurse never made a recommendation or a comment whether to be assessed and went off sick, I involved social worker for safety concern, they did an assessment and he was moved to a nursing home where he deteriorated. The assessment from CHC never took place. I wrote to CQC, social and services and CHC. This assessment never took place, I thought they had 28 days to do it and shouldn’t it have been done before moving him? Also I said it financial end burned the family as we had to pay top up fees in the new home. After phoning 5 months later a date was set but my Dad had died before then. A retrospective review was then done with the usual missing relevant details in a needs portrayal document
    There are so many contemperous issues. I have to reply with my comments to the Ombudsman. Have you any other advice as I can’t afford to take legal action in case I don’t win but I know how much work I have put into it to let them get away with it.
    Thank you

    • Rose Flynn 2 years ago

      The reply from the Ombudsman for communication failings about not following procedure when a DST was not completed correctly involving a MDT was: “The CCG’s local review panel rectified these earlier deficiencies in carrying out a thorough review according to the four key indicators. Therefore the IRP decided that whilst the start of the process was flawed, it was rectified by the local panel by reviewing all the evidence in detail. We are satisfied but taking this approach the IRP properly addressed the CCG’s shortcomings. The IRP role is then to consider the case taking into account all the relevant evidence including family’s submissions, those of the CCG, care home records. The decision takes precedence over the CCG’s findings.”
      I cannot believe it. Urgent advice will be much appreciated.

  8. Ja 2 years ago

    Hi Ian
    Sorry to hear about your bad experience, which unfortunately is all too common. We went through three assessments concerning my dad’s funding and they never got any easier – even the last one, where we actually succeeded in getting Continuing Healthcare (CHC) funding, I felt as if I was banging my head against a brick wall most of the time.
    Two things that helped us a lot was a letter of support from my father’s psychiatrist who stated that in his professional opinion my father should be entitled to CHC funding, and the fact the care home nurse sided with us on a couple of the domains. (But unfortunately not all doctors and care home staff are willing to do this.)
    Regarding your father’s behaviour and his risk of falls the ‘National Framework’ clearly states that a well-managed need is still a need and should not be marginalized just because it is well managed – i.e. they should consider what would happen to your father if the care he was receiving wasn’t in place.
    My father was exactly the same and I argued these points strongly, stating that because of his aggression and mobility problems if the care given by the staff was removed my father would be a danger to himself, others and property as he would be constantly lashing out and falling.
    [quote] 56. ……The decision-making rationale should not marginalise a need just because it is successfully managed: well-managed needs are still needs. Only where the successful management of a healthcare need has permanently reduced or removed an ongoing need, such that the active management of this need is reduced or no longer required, will this have a bearing on NHS continuing healthcare eligibility. [/quote]
    Fighting the CCG is extremely difficult and stressful and comes at the very time when you just want to give all your attention to your loved one – and that is exactly what the CCG are banking on, that people will give up because it is so hard.
    Hope some of this helps. All the best and good luck with your appeal.
    Ja

  9. Ian Potter 2 years ago

    My father has been placed in nursing care home after many falls at home and in hospital and his worsening dementia.
    We were told by the hospital that there was no way he could go home as my Mum would be unable to look after him due to his aggressive nature (caused by his dementia) it took 4 nurses to wash him in hospital. The hospital also stated that Care couldn’t be provided at home as they felt he would require more than maximum possible visits in any given day.
    After he moved in the Care Nursing home he was assessed for continuing healthcare and this is where I’m struggling to figure out what actually went on in the meeting – which are stressful enough when you have to admit and describe how much a loved father has deteriorated.
    Can I first of all say his initial assessment was cancelled due to his aggressive nature and mental state – the delay was six weeks until the rearranged assessment in which time through medication his aggression had subsided somewhat.
    I was then taken aback that his aggressive nature should have been taken into account during his assessment but as it was now ‘under control’ he would not score highly for funding and past incidents were now classed to be outside of the assessment period- how can they cancel an assessment for a reason that’s part of the assessment?
    He is also classed as a high fall risk but low funding as he had only fallen twice since being in the home – again the delay in the assessment ruled out previous fall as they were outside of the assessment period – including the one that put him in hospital. I don’t understand how someone can be high fall risk and low funded – surely this is a case of the home managing the risk well by applying extra staff to escort him around the home – if he had fallen 10 times wouldn’t the NHS be asking the home what’s was going on. Even the home manager finds his low funding mark in this area hard to believe.
    finally when I asked when we would need to start paying if he didn’t get funding or only got FNC funding – I was told categorically by the NHS assessor that payment would start 5 days after we had written confirmation of the decision taken by the CCG – this wasn’t challenged by either the home representative or the local authority representative even though I asked the question twice – I’ve spoke to them both after the meeting and they both recall him saying it -It took the CCG 8 week to write to us too inform us we were only getting FNC funding. I’m now led to believe this 5 days after written notification isn’t true although trying to contact the CCG/NHS to confirm this is nigh on impossible – spoken to 10 people and still no definitive answer – does anyone from this chat know?
    To top it all the assessor was so rude – calling the homes representative ‘stupid’ on numerous occasions – he said to me ‘ how many times do I have to tell you’ when I was trying to get my head round part of the assessment – and at times flatly ignoring the input of the local authority representative. All in all a really bad experience and one I hope never to go through.
    We aim to appeal the decision any advice would be much appreciated
    sorry for the rant – just needed to get it off my chest…..
    Great website – keep up the great service you are providing.

    • Angela Sherman 2 years ago

      Ian – that sounds like a cynical move on the part of the CCG to see if to see if your father’s needs would decrease – and then to ignore the ‘managed needs’ principle. There is no mention of the ‘5 days’ in the National Framework guidance. You may want to make a complaint about the nurse assessor’s behaviour: https://www.nmc.org.uk/standards/code/

  10. Andrea White 2 years ago

    The saga continues. Well actually it doesn’t continue as nothing has been done. Brief summary – Checklist completed August 2012. Submission for retrospective funding submitted October 2012. Decision made that Mum wasn’t eligible October 2015. Informed me of said decision March 2016 after pushing for a response. Notification of dissatisfaction lodged 27 May. After asking for confirmation of receipt I was told that a decision would be made within 10-12 weeks. After countless phone calls (all responded to by answerphone) and emails asking what the outcome was, I received a phone call 2 months ago saying that the process is taking a little longer than they expected and they’ll be in touch. How can I make them do something? I know they will find in favour of their original decision and I’m keen to take it on to the appeal stage. Is it time to go to the ombudsman? Who are these people accountable to?

    • Angela Sherman 2 years ago

      Andrea – many families are in the same position as you, and it’s extremely frustrating all round. You may want to approach NHS England at this point and/or follow some of the options shown here: http://caretobedifferent.co.uk/wits-end-nhs-continuing-healthcare/

      • Andrea White 2 years ago

        Once again Angela – excellent advice and I’ve started drafting letters to go to everyone suggested in your link. What would we do without you and your brilliant website?

  11. Louise 2 years ago

    My Mum is just at the very beginning stages of the Continuing Healthcare (CHC) process and I have found your website and book invaluable. She had a Checklist done by a nurse in hospital which “did not meet needs” but myself and Mum’s Care Home Manager refuted this and asked for another Checklist in our presence. This was done and she passed through to the next stage. That was 2 weeks ago. I have tried to find out when the full assessment will take place but they just say that “someone will be in touch” when they are ready. Also, I am being told that another Initial Checklist will be required as she has developed a chest infection in hospital since the first one was done and the Consultant is tweaking her Parkinson’s medication to see if it will help with her delerium – and “there is no point in doing a full assessment while all this is going on”. Is this correct or should insist on the initial Checklist being used? Also, I can’t find any information regarding the timescales between initial checklist and full assessment? I would be grateful for your comments and help. Louise

    • Angela Sherman 2 years ago

      Thanks for your kind feedback on the book and the website, Louise. Your experience is a good example of how challenging an initial assessment (in your case the Checklist) can force it to be done again more accurately. I’m always suspicious when families are told that a ‘new’ Checklist needs to be done, as it could be that the NHS is hoping the overall scores will be lower. However, your mum’s chest infection is likely to increase her needs in some ways. If a person’s ongoing needs are not clear, there is a case for waiting to start the whole assessment process until things are clearer, but as the Checklist has been done already in your case I would keep pushing for the full multidisciplinary team assessment, and if your mum leaves hospital in the meantime, refuse to pay any care fees until this full assessment is done. The whole process including the funding decision is supposed to take 28 days. This is mentioned in the Continuing Healthcare guidelines: http://caretobedifferent.co.uk/continuing-healthcare-assessment-guidelines/

  12. Sue Zackheim 3 years ago

    Having made a retrospective claim for my late mother’s care home fees, I have recently been awarded a repayment of the last four months fees ( she was in care for 2.5 years). They say I must accept this in full and final settlement and they will add the RPI inflation rate as interest. Not sure why they don’t add Statutory Interest ? I think the claim should go back further but fear that I may lose what has been awarded. Not sure why they can’t pay what is due and I still consider the other period and see what other information I am able to locate. Any views or advice would be very helpful.

  13. Ja 3 years ago

    Hi Susanna, as I will be writing to the ombudsman myself over the next couple of weeks (as the NHS/CCG have rejected my complaint), could I ask what you actually submitted to the ombudsman when you originally wrote to the them?
    For example did you send any evidence with your complaint or did the Ombudsman write back and ask if you had any supportive evidence? I’m just wondering if it’s better to send as much information in the first instance as I’m concerned that if the Ombudsman decides to reject my claim based on my submission alone I won’t get a second chance to provide the supportive evidence.
    If anyone else on the forum has any experience of the ombudsman and what to send with an initial claim I would be very interested to hear from you.
    Good luck Susanna, I’ll keep my fingers crossed.

  14. Susanna 3 years ago

    I am waiting for the ombudsman to make a decision. They have been very helpful and have kept me informed by e-mail and telephone. Even if nothing comes of this at least we can have closure.

  15. Ja 3 years ago

    Thanks Angela

  16. Ja 3 years ago

    Hi,
    I have now been informed by the CCG that my father had a CHC checklist carried out by the memory clinic a month before he went into care.
    However my question is whether or not the CCG was obliged to carry out another CHC checklist (not just a general review) once my dad had actually moved into the home – for example say within the first six weeks of him being in care? (I think I read somewhere that the CCG should carry out a CHC checklist quite early on after a person moves into care, but I can’t find the information again.)
    Just wondering if anyone knows the official position on this matter?
    Thanks
    Ja

    • Angela Sherman 3 years ago

      Ja – if your father’s needs increased between the original Checklist and when he went into care then you could argue he should have had another one. So you could get that process started now. The first Checklist sounds flawed because you were not informed that it was being carried out and so you couldn’t input. That is reason enough to get it redone.

  17. Kevin 3 years ago

    My wife has a major neurological degenerative condition (terminal in three to five years.)
    She gets Fast Track CHC, but her condition has worsened and so in March I asked for a re-assessment of her needs and for her funding to be moved onto a Personal Budget basis.

    Nothing happened so in Late I made a gentle verbal complain to the Team Manager and the paperwork was completed within a couple of days (DST etc) and sent to go before the Funding Panel.

    The Funding Panel has been cancelled three times!

    Is there anything I can do about this?

    TIA

    Kevin

    • Kevin 3 years ago

      Oh, thanks – I found it anyway – NSF – 28 days.
      Thanks for this wonderful site and the book.

  18. Ja 3 years ago

    Hi Gill,
    The ‘Independent Review Panel’ gave my dad 1 severe, 3 highs and 3 moderates and it was mentioned in their report that the DST advices on Page 15;
    ‘Where there is;
    • one domain recorded as severe, together with needs in a number of other domains
    This may… depending on the combination of needs, indicate a primary health need and therefore careful consideration needs to be given to the eligibility decision and clear reasons recorded if the decision is that the person does not have a primary health need’

    If it was me (once you receive the official written decision) I would definitely appeal the decision.
    Good luck.

  19. Rosie 3 years ago

    Does anyone know the process when CCG disagrees with MDT recommendation? I find it strange that we as a family have not been informed!!!

    • Angela Sherman 3 years ago

      Rosie – you should have received a decision in writing from the CCG. If the MDT’s recommendation was positive (i.e. yes to funding), the CCG can in some instances request more evidence. Either way, you should be kept fully informed, and you should have received a copy of the full DST notes with the written rationale for the MDT recommendation.

      • Rosie 3 years ago

        Yes it’s very odd that we have not been kept up to date. The CCG asked for additional evidence which social care and nursing home provided however since that we have not heard anything official.
        I think I will phone them today .

  20. Gill Saxton 3 years ago

    My brother and I attended a CHC initial checklist meeting, taking 2 hours, around 6 weeks ago. He ‘passed’ with flying colours. He has mixed dementia and is bed bound etc etc. We had his full assessment (nearly 3 hours) today and it was concluded by the assessor that he does not qualify for CHC even though he had ‘severe’ in one category and several ‘highs’ and ‘moderates’. We did not agree with him on some of the categories and each time he would say it was a grey area. When the other 2 health workers were asked to sign, the 1 who had done the initial checklist said she was not happy to sign and started referring to her findings and other paperwork. We had to leave the room whilst they had a discussion, the result of which was no change but we could tell that the person was not convinced. It was decided by the assessor that my dad would be entitled to FNC of £112 per week instead. When I asked who actually received the money he said he didn’t know! My dad will in theory remain in his residential care home as it would be too stressful for him to be moved, even though his care home has said he should have been moved to a nursing home a year ago. So as far as I can tell, my brother and I have spent around 20 hours, including travelling time, between us and all we have done is saved the local authority some money! This is because my dad part funds his care and it’s topped up by the LA. If the home then receives this extra funding, my dad won’t receive any more care but assume it will cost the LA less? Please give your opinion. Thank you. The whole assessment was frustrating as the assessor made out it was a joint assessment when it very clearly wasn’t.

    • Gill Saxton 3 years ago

      Forgot to say this is about my dad!

    • Angela Sherman 3 years ago

      Gill – did the social worker speak up during the meeting? If not, this may give you some arguments for an appeal: http://caretobedifferent.co.uk/nhs-continuing-healthcare-assessments-2/ Keep in mind though that until you receive the CHC decision in writing, take the view that no decision has yet been made. The assessors in the meeting can make a recommendation only, not the actual decision. The FBC payment is now £156.25/wk (from 01/04/16) and it is paid directly to nursing homes (not residential homes): http://caretobedifferent.co.uk/registered-nursing-care-contribution/ It sounds as though the assessor in the meeting doesn’t understand how this works.

  21. Ja 3 years ago

    Thanks Angela. CCG has agreed (reluctantly) to pay the medical records fee.

  22. Lorraine 3 years ago

    Thanks Ja,
    I am so pleased to hear you won after all your perserverance and effort Though I see you are now into round 2.I am totally blown away by the deceptive ,corrupt behaviour of these’caring profesionals’.If we behaved in the same manner I am sure we would end up being prosecuted for perjury/deception.

    • Ja 3 years ago

      Hi Lorraine,
      How very true – It is appalling the way they behave.

      Yes, ding, ding, round 2 has just started as the CCG have just let me know that they will not refund his earlier time in care and I must go through the NHS complaints system – so it all starts again. But I must admit the win that will refund more than half of my father’s time in care has made this part a little easier and less daunting.

      On another matter can anyone advise with regards to a refund, and as to whether or not I can claim back the money paid for my dad’s medical records in order to prove his case? I would be interested to hear anyone’s thoughts.
      Thanks and good luck to all.

  23. Ja 3 years ago

    Hi Lorraine,
    Sorry to hear about your very sad loss. It’s so difficult having to deal with grief whilst also fighting the CCG as well.
    With regards to your question, I can only speak from my own experience.
    When I appealed my dad’s decision I was told that stage 1 of the appeal process was a meeting in the first place with the CCG clinical lead to discuss the situation and if I was still unhappy then I could ask for a ‘Local Resolution Panel’ to review the decision which would also be organised by the CCG. Alternatively, I was told I could chose to go straight to the ‘Local Resolution Panel’ if I wished.
    I thought about it and decided that the meeting with the clinical lead would probably be a waste of time and asked to go straight to the ‘Local Resolution Panel’. The CCG weren’t happy, but reluctantly had to agreed.
    The ‘Local Resolution Panel’ meeting took place and (surprise, surprise) they upheld the CCG’s original decision.
    I then told the CCG that I wanted to carry on to the next stage of the appeal process which was an ‘Independent Review Panel’ meeting. This was arranged through NHS England and they did found in our favour, but it wasn’t easy and unfortunately I know that most appeals fail.
    In total it took nearly 2 years to complete the process. Which is a long time, but not as long as I know some people have had to wait.
    Good luck.

  24. Lorraine 3 years ago

    I have recieved a second letter having requested a review.It states my letter was reviewed and the next stage in the local process is a 2 hour (max) ‘remote meeting with a Clinical Appeals Coordinator’ The purpose being to discuss and explore my reasons for disagreeing with the eligibility decision.During the meeting they will explain the next stage in the review process.I feel this is just them delaying the process and hoping I will go no further ? I have clearly given my reasons in the letter I submitted asking for a review.Could I/should I try to bypass this stage.All the information I have read on reviews does not mention this meeting.I do not even live in the same county so this would most likely be wasted time and expense.

  25. Elspethblack 3 years ago

    Thanks. This is helpful.

  26. Andrea White 3 years ago

    Quick update – my solicitor emailed my Notification of Dissatisfaction on 27 May, but surprise, surprise, neither of us received acknowledgement of receipt. I emailed them today to confirm if they had received it and what the next step would be. Their response – within 5 minutes!!!! (I know, I couldn’t believe it either!) was that the ‘case would now be reviewed and on average this can take 10-12 weeks. Once our investigations have been completed this will be communicated to you in writing.’ As they will be investigating themselves I would like to take bets on what the outcome of their investigations will be. Please excuse me if my cynicism is showing.

    Trust, Rosie, Ja and Lorraine – the sheer lunacy of this system is so frustrating and unfair. We just have to keep on keeping on and hope that more of us have the same result as Annie 🙂

  27. Lorraine Buckley 3 years ago

    I am at the stage of asking for a review for my mum who sadly died recently. In the Decision Support Tool the Nurse Assessor filled in a question at the start ‘Do you have a disability’ as NO. Mum had Lewy Bodies Dementia, Parkinson’s, Osteoporosis, Type 1 Diabetes (not controlled over 30 years), had been bedbound for 18 months on an air mattress to prevent bedsores and repositioned by staff every 3 hours. OCD, a history of anorexia (weighed 5 stone) was unable to move her matchstick, painful legs and was not even hoisted to a bath due to her frailty. From then onwards the Nurse assessor wrote fiction………………………..

    • Angela Sherman 3 years ago

      From all the reports we receive from many families, Lorraine, it’s clear that such works of fiction are sadly not unusual.

  28. Ja 3 years ago

    As I start to prepare to appeal the rest of my father’s time in care, can anyone tell me if my dad should have had a checklist assessment done before he went into care or during the seven months he was in his first care home?
    The social worker carried out a number of reviews before he entered care and a couple whilst he was in his first care home, but never a full checklist assessment.
    The first time he had one was after seven months when the care home finally said they couldn’t cope with his challenging behaviour anymore and he needed to leave. Therefore the checklist was carried out as an emergency to get him into an EMI unit.
    My question is basically was the CCG obliged to carry out a checklist during the first seven months or is a social worker’s review enough?
    In fact no one from the local CCG ever visited my dad during the seven months to carry out any sort of review/assessment whilst he was in his first care home, only the social worker who had to do a 50 mile round trip as she was from another district where my dad had originally lived before going into care.
    Thanks for any advise.

    • Angela Sherman 3 years ago

      Ja – yes, this should have been done before anyone made any decisions about who was responsible for pay for care. Remember that the Checklist is just the first stage. Social workers must play an active role in looking at whether a person’s need are beyond a local authority’s responsibility – and that can only be done via the Continuing Healthcare assessment process.

      • Ja 3 years ago

        Thanks Angela that helps me a lot.
        I was just sent forms to fill in by social services who wanted to know what his financial situation was and bank details. At the time I was totally ignorance of what Continuing Healthcare was and just went along with the situation. I just remember being so grateful that I was getting some help at a very difficult time that I never thought there was any alternative, other than my dad paying for his care.
        I will now use this information to continue the fight!
        Thanks again. Good to have it confirmed.
        P.S. Just got a letter regarding refund from the CCG and the games have already begun with them trying to reduce the claim by a couple of weeks. Strange, how CCG mistakes are always made in their favour, never the claimant’s. I’ve made it clear to them that I know the refund should include accommodation charges, top-up fees and compound interest and I want them to break the figures down to show me exactly how they worked it out. We shall see.

  29. Rosie 3 years ago

    This is a tricky one, I have been told that as my mum receives Funded Nursing Care (FNC) the CCG acknowledge she has nursing needs and that is suffice to CHC funding!
    When I try and argue that my mums needs are more than ancillary to the accommodation (she wasn’t allowed to return to her ‘assisted living’ home which had carers 24 hours a day -after her fall) reminding them of the purpose of defining a primary health need I was told that CHC funding will bankrupt the NHS!!

    • Angela Sherman 3 years ago

      They’ve shot themselves in the foot there, as the statement shows clearly that they’re basing decisions on budgets and not on need.

  30. Rosie 3 years ago

    Ok have you heard that you can’t use the same evidence in more than one domain?
    We were also told that it was difficult to show mum is at risk of hurting herself or others until I challenged them that was because she can’t have anything in her reach to grab, throw or spill over her!
    This process really is proving beyond needs, it is bureaucratic and I think very discriminatory towards people with late stage dementia, who have no voice!

    • Angela Sherman 3 years ago

      The need to keep things out of her reach, Rosie, is a need that requires managing and funding. So you were quite right to challenge this. If needs and risks apply in different domains, be sure to keep making that point; specific needs often have an impact on a number of different domains. Sadly we often hear of assessors trying to look at things in isolation – but the human body doesn’t work like that!

  31. Annie 3 years ago

    Thanks Splishy and Andrea, and thanks for your very good advice Splishy. I don’t have all the info needed at the moment, most of it but not all, this is my next challenge!

  32. Trish 3 years ago

    Hi, received a letter last week to say that my claim for my late mothers care costs was rejected. They wouldn’t do the last year of her life – when she was at her worst – as they couldn’t get the medical records for that time. Finding it difficult to understand how they could have records for 2009 and 2010 but not 2011. They are saying that as they have no records this period isn’t covered. Where do I stand now?

    • Angela Sherman 3 years ago

      Trish – if the NHS cannot find the records, they cannot simply say that your mother was not eligible for retrospective funding. The NHS must show clearly how any funding decision has been made, and if they cannot do this, then they cannot assign responsibility for previous care fees to your mother. You can approach NHS England and ask for an Independent Review, and state that the CCG are making decisions without the proper records. This may help: http://caretobedifferent.co.uk/what-are-the-different-stages-of-nhs-continuing-care-assessment-and-appeal/

  33. Andrea White 3 years ago

    Well done Annie – brilliant news, so happy for you and excellent advice splishy. Let’s hope there are many more people able to post their successes.

  34. Annie 3 years ago

    Thank you Angela that’s very useful, your help really has been invaluable.

    • Angela Sherman 3 years ago

      That’s really good to know, Annie.

  35. splishy 3 years ago

    Congratulations Annie, are they having a push at getting them through I wonder? One of the nurses told me they had a deadline to get all their cases processed and they were approaching it, although she didn’t say when it was. We used no win no fee and the solicitor has advised us to have proof of charges from the homes as well as proof of corresponding transactions leaving the bank account, Luckily the bank account in question was with Lloyds and they provide historic statements going back further than some others – at no charge. You might want to gather that information if you don’t already have it lying to hand (we didn’t) as goodness knows if that will be more excuse for delays in finally closing the file!

  36. Annie 3 years ago

    I posted a comment 3 months ago, as I wasn’t getting anywhere with my late father’s retrospective CHC review, which I had applied for in 2012. The problem was that the assessors wouldn’t go ahead with the review as they couldn’t get any documentation from his care home.
    I wrote to the assessors asking for the review to go ahead with the documentation they did have, but I didn’t receive any acknowledgement or reply.
    Then, amazingly, I heard yesterday that the claim has been upheld – I still can’t believe it!
    But now I’m wondering, what is the situation regarding interest? Is interest payable on the amount due?

  37. Rosie 3 years ago

    Yes we certainly are lucky to have found Care to be Different. At the last DST they said there wasn’t enough evidence to show mum refusing medication – mum has her meds given covertly! How many times do carers have to document every move my mum makes just to satisfy the CCG? It appears that ‘well managed needs are still needs’ (CHC guidance) has no bearing on our local CCG!!

  38. Andrea White 3 years ago

    Splishy and Ja – amazing result, I couldn’t be more pleased for you. Plus, it is a spur to the rest of us not to give up. I actually gave an interview on the Radio 4 programme, but their main focus was on the length of time being taken to reach a decision, but the interviewer gave the ‘health professional’ a real grilling. It was fantastic that at least some of the aspects of this flawed system are being aired nationally. I have now submitted my Notification of Dissatisfaction to the CCG doing the review. They will review their own review and I will be invited to attend the ‘hearing’. Any guesses about what the outcome will be? Rosie – we too are determined to take this as far as we can – also as a matter of principle. The radio interviewer asked me how much money was involved and I honestly didn’t know until we did a quick calculation before the programme. If the assessment had given me proper, logical reasons for refusal I would have accepted it, but they just ticked boxes that said no evidence without taking into account that there was evidence in previous years. As my solicitor said, “it is ludicrous to suppose that having been doubly incontinent in 2007 that she suddenly became continent”. The whole assessment was riddled with this kind of ‘objectivity’ so am hopeful that once the Dissatisfaction review has found in favour of the assessors we too can go to the IRP stage. Rosie, aren’t we lucky to have found Care to be Different? I just hope others in the same boat as us find them too. Thank you Angela and your team for giving us the information and encouragement to go on.

    • Ja 3 years ago

      Thanks Andrea. One of the criticisms by the independent review panel was the length of time it took the CCG to carry out the assessment from the checklist to notifying me that my dad wasn’t eligible. (Surprise, surprise!)
      We also had a similar problem as you mention as my dad suffered a stroke in 2013 which left him immobile – but in his 2014 assessment the CCG stated he had suddenly become capable of walking and moving from chair to chair! It is despicable and disgusting the lengths they will go to – I don’t know how they sleep at night! Good luck with your claim; I’ll keep my fingers crossed!

    • Angela Sherman 3 years ago

      Thanks, Andrea, for your kind words. I’m so glad the information we publish is helpful. The CHC process certainly can be a hard battle. It shouldn’t be like that, of course, but sadly it often is.

  39. Rosies 3 years ago

    We’re waiting for our appeal to go to panel again before we can move to IRP. It is exhausting, frustrating and filled with barriers but we too are determined to continue as a matter of principle.
    So pleased people have been successful, wishing everyone else still fighting courage and energy!
    Thank you Care to be Different for all the information and guidance too!!

    • Angela Sherman 3 years ago

      Thanks for your kind words, Rosies.

  40. splishy 3 years ago

    For those of you who didn’t catch it, there was a programme about continuing care on Radio 4 last week. I know when we were going through the process I was hungry to hear any media coverage and it all went very quiet for a while. We actually first heard about the possibility of a retrospective claim (and the looming deadline) through a R4 programme, and used the solicitors that they interviewed in that original segment back in 2012. Here’s the link for last week’s programme for anyone who’s interested.
    http://www.bbc.co.uk/programmes/b04p86c4

  41. Ja 3 years ago

    Thanks Angela, the result was made all the more sweet as it was won on my father’s mental health issues, which the CCG fought tooth and nail against.
    I am determined to carry on with the fight and will be challenging the earlier CHC decisions regarding my father as it has now become a matter of principle.
    Believe me I know how hard it is sometimes to carry on but I hope our success on mental health will encourage others to continue. At my lowest point, which was after my dad died, I spurred myself on by telling myself, win or lose it didn’t matter, because at the end of the day I had come this far and at least I knew I had tried my best for him and that is all that mattered.
    All the best to everyone.

  42. Angela Sherman 3 years ago

    Thank you for your kind feedback, Ja. Splishy and Ja – well done for persevering and getting a positive result. That’s really good news.

  43. Ja 3 years ago

    Congratulations splishy! I know how you are feeling.
    After 6 weeks I finally received the Independent Review Panel’s decision and I am extremely pleased to report that they have agreed that my father should have been entitled to NHS funding!
    It has taken two years but we finally got there and I am sure my father, who sadly died at Christmas, is smiling down on us.
    It has been an extremely hard, stressful and exhausting time but obviously I am so pleased I decided to try.
    We did it without the use of solicitors but it was certainly not easy and our success is in many ways due to this site’s great information and advice.
    Thanks Angela – you are doing a fantastic job and good luck to everyone!

  44. splishy 3 years ago

    Since starting our claim for CHC in September 2012 we have now had our claim upheld. We did use the services of a law firm on a no win no fee basis as to be honest we couldn’t face dealing with the various constituents by ourselves. Our claim involved getting records from two care homes, GPs and hospital records and we certainly faced obstacles along the way. However I’m happy to report that we did succeed, so do keep at it – it’s beyond frustrating (even more so when you’re doing it by yourself I’m sure) but there are some success stories. Wishing all of you still battling all the best of luck!

  45. Andrea White 3 years ago

    The saga continues! The Retrospective Review Service has got back to me with a Notification of Dissatisfaction document and given me until 27 May to respond. In my letter informing them that I was going to appeal against their decision I asked for copies of all the health records relating to my mother that they hold. In their response, they refused as ‘they are not custodians of the records’ and I would have to ‘request in writing for copies to the local CHC people. There was no explanation as to what or who or where the CHC could be found. I tracked them down and they only have the Social Care records that they can only send on completion of the online forms. With regard to other health records I was told to go to my mother’s doctor surgery. As my mother is deceased I was told that they will have ben sent, together with the hospital and mental health records to a repository in the county and I was given a phone number. Guess what – the number I was given is that of the Retrospective Review Service. I telephoned the service who sent me the letter to tell them that the social care records could take up to 40 days to be sent, which takes the time limit beyond the time limit to respond. They refused to extend the time limit and asked me why I needed them anyway. I said that I disagreed with the clinical judgement of the Nurse Assessor and I needed to see the medical records to ascertain whether they had been correctly judged. He then told me that he had all the records and once again, verbally, refused to allow me access to them. I told him that they were obliged to give me access if I was appealing. He told me that this was a Local Dispute Resolution, not an appeal. This, despite the letter stating that the LDR is the first stage in the appeals process. In all, I have made 5 phone calls and nearly 3 hours trying to track down medical records all to no avail. I am so frustrated and am now totally convinced that the Retrospective Review is a total farce with every intention of being as obstructive as possible. Thank you for allowing me to rant. As a final point they have returned my photographs of Mum showing her to be around 4.5 stone – in the letter, they asked if these were the originals!

    • Angela Sherman 3 years ago

      That’s frustrating beyond belief, Andrea.

  46. andrea White 3 years ago

    Thanks Angela – I expected them to play fair and use common sense. I didn’t think I would have to go through this process, but you are right, anyone starting out should always get as much written evidence as possible. Take copies of every review and care plan – my Mum was on three monthly reviews as she was deteriorating so quickly. What a wonderful ‘get out clause’ in the guidelines, that diagnosis isn’t evidence of medical need!

    Good luck to everyone going through this process

  47. Andrea White 3 years ago

    I have come to the conclusion that in my case, the CCG either haven’t read the timescales, do not understand the timescales or are just out to mislead and scare potential appealers. A decision to refuse my claim for retrospective funding for my mother was refused on 9 September 2015. After I phoned at the beginning of March to see if there had been any progress, I received the letter telling me of their decision on 18 March 2016. The sedan from last paragraph stated ” If, however, you disagree with the Panel’s conclusion then please detail your concerns in writing within 30 days of receipt of this letter”. Thankfully, I found your website and doubly thankful I have taken legal advice and apparently I have 6 months, not 30 days to appeal. However, I have written (sent recorded delivery as I wouldn’t put anything past them!) to them informing them that I intend to lodge a formal appeal against their decision and I see above that they should acknowledge this within 5 days? We shall see.
    My biggest bone of contention is burden of evidence and their complete lack of using the probability argument. EG my Mother was reported as being bedridden in 2007 (yes there was written evidence for that year), but no evidence for 2008 and 2009 meant that for this area she was marked as low priority. The catalogue of evidence for one year that was not carried forward into the following years was shocking and impacted heavily on my mother’s scores.
    I am now fighting mad – not so desperately distressed as I was when I first received the documents – and am in the process of taking legal advice. All I want is for a fair, unbiased, logical decision. I am more than happy to share my experiences and the outcomes on this brilliant website.

    • Angela Sherman 3 years ago

      Thank you for your very kind words, Andrea. Families often report that they’ve been told to respond within a very short time, when in fact they have longer. The ‘evidence’ pulled together in retrospective reviews (and indeed in current assessments) is often very ‘thin’ and shoddy, and hardly suitable as decision making material – as you’ve discovered. It’s vital to check everything and pull together a detailed summary of every inaccuracy, omission, misleading statement, etc., as no doubt you are.

  48. Phil Seurre 3 years ago

    You understood my question perfectly, I am waiting for a response to my request for an IRP with details of the form that my appeal should take and submission of additional evidence. You have said that they must hear my appeal within three months of my request, this helps.

  49. Phil Seurre 3 years ago

    Interested in all theses comments, can you please tell me if there are timescales within which the
    NHS must reply, even only to acknowledge, requests for an IRP to hear an appeal. I applied in writing on 14th March and have heard nothing. What sort of information do they look for at this stage?

    • Angela Sherman 3 years ago

      There are timescales for the initial assessment process and decision making, which is 28 days, but (as far as I’m aware) no specific time within which the NHS must reply to an IRP request. If you don’t receive a reply soon, contact NHS England directly. In advance of the IRP you’ll need to put together an appeal, if you haven’t done so already, citing all the reasons why you disagree with the current funding decision.

      • Rosie 3 years ago

        I’m confused, I thought the CCG had 3 months to respond to an appeal of the DST decision as long as the appeal was requested within 6 months of the decision letter?
        I have a local meeting with the appeals coordinator in a couple of weeks for her to explain the judgements made to support their decision and for me to explain why I think they are wrong! Should be interesting…

        • Angela Sherman 3 years ago

          Hi Rosie – yes, for local level reviews you are correct. I may have misunderstood Phil’s question – I understood he was asking about the time required for an acknowledgement of an IRP request. IRPs should however be actually conducted within three months of the request, as outlined above.

  50. Angela Sherman 3 years ago

    Reply to Susanna Mullins: You’re absolutely right, Susanna. It’s a cop out. Just because they don’t have evidence doesn’t mean they can make a decision in their favour. If they don’t have the evidence to show that she was ineligible, then they cannot reach such a conclusion.

    • Susanna Mullins 3 years ago

      I wrote to the NHS and voiced my concerns and they replied that there wasn’t ‘sufficient profession detail to be able to reach a recommendation regarding eligibility’ and that multidisciplinary meetings are closed meetings. Through out the letter they keep quoting insufficient professional evidence. Is this worth pursuing? If so who do I contact now?

      • Angela Sherman 3 years ago

        Susanna – Multidisciplinary team (MDT) meetings should be open and transparent – and the family should be involved and invited to input. Whoever has said that those meetings are closed doesn’t know what they’re talking about. The National Framework for NHS Continuing Healthcare makes it very clear that family involvement is very important. Depending on what stage you’re at, you may want to contact NHS England for an Independent Review. This may help: http://caretobedifferent.co.uk/what-are-the-different-stages-of-nhs-continuing-care-assessment-and-appeal/

      • Susanna Mullins 3 years ago

        I e-mailed the National Audit Office and they said because my mothers records have been lost, it may warrant further investigation. It was suggested I referred the case to the Parliamentary and Health Service Ombudsman. Do I need to inform the NHS Respective Review Team that I intend to contact the Ombudsman?. I must add that my sister and I were never told/invited to any meetings when my mother was assessed during the six years she was in the nursing home.

        • Fran Shuttlewood 3 years ago

          Susanna,
          I am in exactly the same boat, no records can be found (from Care Home, Doctor, Hospital, Mental Health etc, etc) for my mother-in-law despite the fact that she was ill for many years. What rubbish!! Can I ask how your claim is progressing? I am just about to write back to the CCG and tell them that we intend to appeal.
          Many thanks in advance.
          Fran Shuttlewood

  51. Angela Sherman 3 years ago

    Reply to Susanna Beaven: What a shambles the NHS is, Susanna. Sounds like they cannot even find their own paperwork. Also, if they held the multidisciplinary team meeting without you, and as a result they deny funding, they must repeat the process. Social Services MUST be involved, by law, in order to ascertain whether or not your mother’s care was within or beyond the local authority legal remit.

  52. Ja 3 years ago

    Thanks Angela. I found the link very useful. I will let you know how I go on at the IRP which has been rearranged for April – unless of course the CCG decide not to carry on after reading my lengthy submission and evidence. (But I’m not holding my breath, knowing how they operate.)

    • Angela Sherman 3 years ago

      Wishing you well, Ja.

      • Ja 3 years ago

        Well finally had Independent Review Panel (IRP) last week. It seemed to go ok but very difficult to say if they will find in my dad’s favour or not. The Clinical Commissioning Group (CCG) actually said very little. I will now have to wait 6-8 weeks to find out. One thing though, the IRP chair did confirm that it wasn’t possible for them to look at anything except the period covered by the last Multidisciplinary Team, as it was outside their remit, so I will have to go back to the CCG regarding the rest of the period, which I am happy to do as I have already done all the donkey work in preparation for this one. But for now I am going to forget everything for the next couple of months and have a well-earned break and spend some quality time with my grandchildren. I will post again once I find out the decision. Good luck to anyone going through this nightmare of a process that robs you of so much precious time.

  53. Annie 3 years ago

    I don’t know what to do. I applied for retrospective CHC funding for my late father in August 2012, but I’ve got nowhere.
    My late father’s care home won’t send any documents for the review, despite being chased up all the time.
    The problem is that my father was neglected at the care home and they had a lot of adverse publicity in the local press because of this.
    After my father died there was an inquest because of the state he was in, but the inquest was delayed for years because the care home wouldn’t send documentation to the coroner. Now, unsurprisingly, they are not being helpful with the CHC review. Without documents from the care home, the review can’t go ahead – although I have provided all of the documents from the inquest, and from Social Services from before my father died, which are very detailed. Does anyone know if these are enough for a review?

    • Angela Sherman 3 years ago

      I imagine it’s been a very distressing time, Annie, not least because of the way your father was treated. The problem of care notes is one many families face. The documents you have may be OK – I can’t really say. But keep in mind that just because care notes are not available doesn’t mean your father wasn’t eligible for CHC. There’s no logic to that argument, and yet it’s once that assessors use. There’s an argument to say that if the proper notes aren’t available, then no one can say that your father wasn’t eligible, and so the case should be settled regardless. You may need some legal help with this. You’re welcome to contact us via the Contact link below and we may be able to put you in touch with someone.

      • Annie 3 years ago

        Thank you Angela.
        I’ve now written to the assessors asking for the review to go ahead asap with the records that they have, as I’m really fed up with chasing this. I’m expecting them to turn it down because of the lack of records, when in reality I think they have enough to prove how ill he was. We will see, but I think legal help may be needed.
        Thanks again for your help.

  54. Ja 3 years ago

    Thanks Angela. I did mention the lack of information in my LRP submission which included the 2013 assessment, but the CCG insisted the period under consideration was only the 2014 claim. I will bring this matter up at the IRP when it is rescheduled.
    I have to say a big thank you for all the incredibly useful information on your website because if it hadn’t been for you I wouldn’t have got so far with my appeal. Yours was the first website I came across when I started to look at what CHC funding was all about. I purchased your eBook and have found it an invaluable source of information that I constantly refer to. Your emails are also of great help, including your last on that mentioned the use of the phrase ‘routine care’ which I quickly incorporated into my IRP submission the day before I had to have it in.
    The CCG have used every underhand trick in the book (and more), many of which your website and ebook alerted me to. It has literally taken up two years of my life so far with months and months of researching, writing lengthy submissions, gathering evidence etc but I am determined to carry on for my father’s sake, who sadly died at Christmas.
    If it is determined that I can only claim back for the 2014 assessment how does that work regarding a refund? (Refunding is one of the areas which I am still uncertain of.)
    My father’s checklist assessment took place in November 2013 when he screened him in for a full CHC assessment but the MDT did not meet until the following year in March 2014 when I was told he was not eligible. It then took the CCG panel another 3 months, June 2014, to confirm this. So in total it took them over seven months to reach a decision which I understand should have only taken 28 days at the most. Does the refund go back to the date of the checklist (Nov 13), or the date I was notified (June 14)?
    And how far forward can a refund go, is there a maximum limit, e.g. 12 months?
    Any advice would be more than welcome.

    • Angela Sherman 3 years ago

      Thank you for your very kind feedback on our website and info bulletins and book, Ja. It’s good to know they’re useful. I’m sad to hear your father died at Christmas. Not an easy time, I’m sure. A refund goes back to day 29 after the original Checklist is received by the CCG. (And there should be very little, if any, gap between the Checklist being completed and it being received.) This may help you with refund guidance: http://caretobedifferent.co.uk/continuing-healthcare-redress-2/ Make sure they pay interest on any refund amount.

  55. Ja 3 years ago

    HI,
    I am currently awaiting an IRP. The first one should have taken place a couple of days ago but was cancelled by the IRP because they said the CCG had not considered enough evidence and they wanted them to look at it again, including the extra evidence I supplied.
    The assessment I am appealing (within the 6 months time limit) took place in 2014. However I would also like to appeal the first CHC assessment that took place in 2013, but I am unsure as to whether or not I am allowed to do this.
    The reason I didn’t appeal the 2013 was because I had no idea what CHC funding was about a I had never been informed, I though they were just health care checks that everyone in care homes underwent. and it was only in 2014 that I learnt exactly what these assessment were really about.
    Do you think there is any chance I could ask that the first 2013 assessment is also considered by the IRP or would I be wasting my time.

    • Angela Sherman 3 years ago

      My own view on this is that, if the health and social care authorities failed in their professional duty to inform you properly, then it’s not your fault and it should not penalise your relative – so I would put a claim in on that basis. The local NHS bodies were told to promote the claim deadlines to their various populations, so families would know about them, but this largely did not happen. You may have to pursue a separate claim, but it’s worth asking.

  56. jayne Lancashire 3 years ago

    I am continously up against a wall with the review department nothing been done at all for first 4 years apart from sitting on someone’s desk collecting dust. Now we are another coming up to 3 years, it sitting on someone else’s desk who seems to do just as little, not wanting to do anything. As soon as I told them frustrastions today, as anyone would be all this time, she put the phone down on me. That was totally unprofessional and I’m shocked these people are even in a job and this was a so called team leader, who clearly has no idea how to conduct themselves. My mother in law has since died 2 years ago. She had a stroke 16 years ago and father in law cared for in their home on his own. But 8 years ago it was taken out of his hands when the social services took her into a nursing home. But my father in law was still made to sell his home and pay well over £80,000 in fees. Interestingly enough he was the only one in the whole place paying anything. When he was caring for my mother in law at home all that time he did everything for her as she was totally paralysed down one side. At no point in all of that time did they receive any help whatsoever. I asked to speak to a senior management today above this person and the manager has been on long term sick so yet again another brick wall and no further down the road. I am sure the media would love to know about all these departments in the NHS that do very very little. I mean how does someone have a case to investigate for 4 years and not one single thing was done. I am of the understanding we where not the only ones. Well over 7 years down the road and nothing!!!!!!!

    • Angela Sherman 3 years ago

      How maddening and frustrating, Jayne. And it sounds like thoroughly unprofessional behaviour on the part of the NHS person. Your father in law should not have paid anything from his own money (or his share of any money/assets) for your mother in law’s care. Many families are not told this by the care authorities. You may want to contact local or national press with your story perhaps?

  57. Carol 3 years ago

    My mother, who has severe dementia, has recently been awarded CHC. Her funding started from the date of the DST meeting (after a 4 month wait from checklist submission to DST session). Mum’s care needs are severe and complex, and because of this, I believe that she is likely to have been eligible for CHC for many months (if not years) before the nursing home suggested we apply for CHC funding. I have spoken to Mum’s home about this and they say they will support my application for a retrospective CHC claim. I’m unsure how to proceed. Do you have any advice on the process I should follow?

    • Angela Sherman 3 years ago

      Hi Carol – your mother’s new CHC funding should have started from day 29 after the date of the Checklist, not the DST. Families report that they are often given misinformation about this, and as a result they miss out on funding. Regarding a retrospective claim, write to the CHC team and insist on a retrospective review back to the time you believe your mother would have been eligible. It sounds as though the CHC team failed in their duty to properly assess your mother before.

  58. Jennine 3 years ago

    Received the Decision Support Tool document (DST) for a retrospective CHC after 15 months. We have been given 2 weeks to respond. This is clearly on purpose to ensure we cannot provide our comments to the panel in time. They then of course have 6 weeks before the panel to review our comments. As there is no legislation on what time they give us, they can do what they like. It works all in their favour. If they think we will give up, forget it, we are taking it all the way through all the appeals processes.

    • Angela Sherman 3 years ago

      This is rather typical, sadly – that the NHS seems to be able to take as long as it likes but then give families hardly any time to respond. Write to them immediately requesting additional time.

  59. Hal 3 years ago

    So what happens if you are refused at checklist stage where social services carriec out the check? One can’t appeal a CHC decision as the NHS CHC did not make a decision!

    What then can one do – get involved in a SS complaint procedure? Or complain to the the local CCG CHC section, but about what?
    H.

    • Angela Sherman 3 years ago

      Although a Checklist can be carried out by any health or social care professional (who is trained in the process and knows the person’s care needs), it is still an NHS process and responsibility. Any complaint about a Checklist needs to be made to the CHC Dept at the local CCG – regardless of whether or not social services actually carried it out.

  60. Sheila Perry 4 years ago

    Mother died in July 2012, in Jan-2013 we were advised that we could claim for care fees paid from April 2011 up to Jan-2012 when she became fully funded. In 2008 mother went into care suffering with dementia and was classed as high dependency.
    Without going into all of the problems of her decline I did apply for retrospective funding & at that time [Jan-13]was told that the claim should go forward. Not until 2-weeks ago after speaking to my M.P. [Dennis Skinner] did I get a satisfactory reply from the CCG only to be told that she was not eligible for refund, so it has taken 2-years and 7-months to reach this decision. I am now going dissatisfaction procedure, will this take another 2-years?. I think these people hope that you will either give up or die!
    Can I at this stage still take this to a solicitor?

    • Angela Sherman 3 years ago

      Hi Sheila – If they told you your mother was not eligible for a refund, they should be able to produce full documentation of the whole review process, including what evidence they have looked at, how the review was undertaken, copies of Needs Portrayal documents (summaries of care needs), how they have applied the eligibility criteria, etc, etc. You should have been kept informed and involved throughout. If the NHS has failed to abide by the guidelines, you have every right to appeal. You can take this to a solicitor at any stage of the process. Alternatively, a care funding specialist can also help. If you need any contact details, do get in touch using the Contact link below.

  61. carol barker 4 years ago

    My mother in law died in April 15. We now know she should not have been paying for her care in a care home. Can we still claim money that’s been paid for her care back.

    • Angela Sherman 4 years ago

      Let the NHS Continuing Healthcare team know immediately that they failed to assess your mother in law when she went into care, and while she was in care. Insist on them dealing with this as a matter of urgency. You may still be able to claim for about a year’s worth of fees. However, a further argument to use is that they failed in their professional – and legal – duty to properly assess; this could potentially have put the local authority in an illegal position all this time, which calls into question the legality of the care fees. These articles may help: http://caretobedifferent.co.uk/vital-information-about-paying-for-care/ and also http://caretobedifferent.co.uk/nhs-continuing-healthcare-assessments-2/

  62. Michael Villis 4 years ago

    My Mother was diagnosed with dementia in 1994 and had severe dementia problems in 1998 where she was admitted to a private care home. At that time my Father was terminally ill with cancer and died six months after my Mother was admitted to the home. The family paid for the £2750 monthly bill for 9 years during which time my Mother deteriorated year on year and died in 2007. In last four years of her life she was marked as severe to priority in all twelve aspects of the care domain score sheet which is the indicator to the Retrospective Review panel when making their final assessment.
    Our claim to the Clinical Commissioning Group was made in June 2012. The letter from the review panel arrived 29th May 2015, nearly three years after the claim was made; according to the panel review we are not eligible. I cannot understand why when my Mother for the last 5 years of her life, could not move, speak, could not feed herself and had been doubly incontinent for 10 years. Everything she required to survive required 24 hour nursing care. Furthermore, the nursing fees were in excess of £3000 per month at the time of her death.
    A full report with the Multi-Disciplinary Panel (MDP) recommendation was meant to have been sent within 6 to 8 weeks of receiving the letter in May this year. It is now thirteen weeks and still there is no report in the post. When I phoned this week I was told that the panel have not signed off the report. I find this extremely annoying as I am wanting to appeal. Could you recommend a solicitor who specialises in these situations as I feel my case is 100% watertight.

  63. Linda Rickwood 4 years ago

    Thank you Angela, we are going to call her bluff and tell her to put it in writing with an explanation so we can show it to our solicitor.

  64. Linda Rickwood 4 years ago

    We are in the process of claiming back my mums care home fees and the retrospective claims team have told us that they will only assess from when she entered the home in 2008 to 31st March 2012′ they say after that it becomes a “Legacy claim” which is nothing to do with them. We have never heard of this, neither has our solicitor, can anybody shed some light on what we do now please.

    • Angela Sherman 4 years ago

      Hi Linda – what you’ve been told by the retrospective claims team is nonsense. The period after 2012 is everything to do with them, and they should address this, just as they are for the 2008-2012 period.

  65. Susanna Mullins 4 years ago

    My mother was in a care home from 2000 to 2006, I have heard from the Primary Care Trust that the care home no longer has records of my mum. They informed me that the un-assessed review will be from 2004 to 2005. Can anyone tell me why the preceding three years are not being assessed. It has already taken 3 years to get this far!

    • Angela Sherman 4 years ago

      Retrospective reviews go back only to 01/04/2004 unfortunately, and it’s very difficult now to get anything reviewed earlier than that now. If you mother was in a care home until 2006, though, and you believe she may have been eligible until 2006, then the NHS should be reviewing 2004-2006. It’s a very frustrating process (as you have already discovered), but it’s vital to insist on the proper period of review, i.e. up to 2006.

      • Susanna Mullins 4 years ago

        Thanks for explaining the process. The NHS are reviewing 2005-2006. Can I request my mums assessments? I was never told when the assessments where carried out or by whom.

        • Angela Sherman 4 years ago

          Yes, if you are acting for your mum, whether retrospectively or otherwise, you should be able to see the notes the NHS is using to make their decision, so definitely ask for those. If assessments were carried out, there should be copies of the Decision Support Tool documents somewhere. The NHS may ask to see formal evidence of your authority to act, e.g. a power of attorney or proof that you are now acting on behalf of your mum’s estate.

          • Susanna Beaven 3 years ago

            I requested my mothers assessment notes five months ago and again in January 2016. Today I have received a letter, dated & March 2016, informing me that the assessments cannot be located. They held a meeting today and the term was ‘multidisciplinary team meeting’ and that they had limited evidence available. I was surprised we were not asked to attend the meeting. They also said the my mother was not known to the Social Services. When I submitted the criteria form I gave them the name of the Social Worker who completed mum’s initial assessment. If they have lost the assessment forms what are the chances they have lost the letter we received, after mum had died, that there was nothing wrong with my mum and that they intended to increase her payments.

          • Susanna Mullins 3 years ago

            Please can you help? I have received a letter from the Retrospective Review – Multidisciplinary meeting, that due to lack of evidence they cannot take my mother’s case any further; their outcome is Case Closed due to insufficient evidence. The only evidence they have is from mum’s GP. The care home – No records. Mental Health – no records provided, Social Services, requested but not received, District Nurse, unknown if service used. I feel that this is a cop out. The last letter I received they stated that there was no Social Services involvement, I told them there was and this has now been noted on their form. What do I do now as theie decision is based on what THEY don’t know and not the truth.

  66. Christine 4 years ago

    My mother put in a claim for a period of previously unassessed Continuing Healthcare Funding for my late father. The claim was submitted in November 2012. We have received numerous letters informing us of our place in the queue and now we are being shunted further down the queue as the CCG is taking on cases from other areas. My mother is elderly and time is of the essence for this claim to be concluded. How do I go about expediting our case? I suspect the CCG would be delighted if my mother died before the case was concluded so they could refuse payment if we are successful!

    • Angela Sherman 4 years ago

      You’ll need to keep chasing them, every week if necessary. I know of one person who is calling the CCG every day. It’s very frustrating, but keep persevering. I can certainly understand your concerns.

  67. terri 4 years ago

    Hi
    We applied nearly three years ago for my late mothers retrospective claim, it has gone to panel and now waiting ratification and then CCG does anyone know how much longer it will be? It went through panel approx. 1 month ago

    • Angela Sherman 4 years ago

      These claims are taking a long, long time and the situation is quite unacceptable. Keep chasing the CCG for a decision.

  68. Joan Smith 4 years ago

    Can Continuing Healthcare stop my husband’s care funding whilst appealing against a decision that he does not hold the criteria for NHS continuing healthcare funding?

  69. Ros Collin 4 years ago

    My 96 yr Father has been in a home for 6 yrs, now cannot feed himself, almost bed-bound, it takes 3 people to hoist him: Alzheimers and vascular dementure etc etc.He is in a residential home because he is passive,and they have agreed to keep him if they can cope as we do not want to move him.His annual assessment is due in June. What can we expect from the NHS as his money is running out at £3,000 per month.?

  70. Chris I'Anson 4 years ago

    My mother in law was discharged from a long stay in hospital where we were informed she was suffering from vascular dementia was a risk to herself and others and needed to go into an emi nursing home. Whilst in hospital the family, doctors and nurses did a dst test on mum and she was put forward for continuing nursing care, shortly after the family were told she was not as bad as first thought and did not qualify, this happened three times, we then got a letter from head office saying that there was not enough evidence. The three dsts were done by six different nursing staff who all agreed she met the criteria. the doctor had the family in to say how bad her behaviour was and that she had attacked staff and visitors, we were told by the doctor that she needed to go to an emi nursing home and that her behaviour was bizarre. When we were told she could not go home we reluctantly let her go to this nursing home. she had been there six weeks when we were asked to do another assessment which we did not agree with so we were told we would have another asessment in February to see if she had settled down. She has been violent in the home, she has lots of medical problems eg she is disabled, partially sighted, osteo arthritis, diabetes type two, high blood pressure, skin problems etc.
    I thought all this was wrong until I read your website, but the fight goes on!!!!

    • Angela 4 years ago

      Thanks for sharing your experience, Chris. This is sadly not unusual when it comes to some the things that go on in CHC. Just appalling. Wishing you ongoing determination in your fight.

  71. Martin 5 years ago

    We applied for NHS Continuing Health Care for my mother. My Mum has dementia at the advanced stage. We have to date paid over £50,000.00 for my mums care Home. The care home have been great. My mum Qualified in all areas for the NHS Continuing Health Care when the assessment was completed by social services, Nursing staff and Doctors. The continuing Care Team of 5 Senior and Associate care team reviewed the assessment they declined the Continuing Heath Care. My mum now has Hospice Nurse visiting her and she has just been on end of Life Care, which means she could die any day. What is going on. I do not think these people know about the Human Rights Act 1998. I want to take NHS to court and for these people to lose their jobs because they do not know what they are doing. My Mum need end of life care and my family need support as well. Regards
    Mr M.T. Smith

    • Angela 5 years ago

      Thanks for your comment, Martin. You’re not alone in your feelings about some of the people who work in health and social care. Many assessors seem to either obstruct process, ignore the guidelines or just don’t have a clue about proper process. Families naturally feel incensed and enraged at what goes on.

  72. melissa bull 5 years ago

    anyone know of a possible timescale of how long an appeal of this kind can take?

    • Angela 5 years ago

      Very hard to say, Melissa. The retrospective ones are taking longer than appeals for current funding. It comes down to the area you’re in, how overloaded the NHS is, how helpful/competent (or otherwise) the assessors and reviewers are, how quickly you can get a date for an Independent Review – all sorts. Retrospective claims – at least a year, I’d say – but often longer. Current appeals – it varies hugely.

  73. melissa bull 5 years ago

    hi the retrospective claim has now gone to an appeal process following a meeting last dec , so wonder how long a wait this will be…………. who’d have ever thought this would take so long, its so wrong how things get pushed from pillar to post

  74. Angela 5 years ago

    Keep chasing the Ombudsman for a response, and keep pestering the NHS too, every day if you can. They seem to be a law unto themselves, unfortunately. It may be worth contacting the regional or national levels of the NHS National Commissioning Board, although they’re part of the same ‘machine’.

  75. PAM RIMMER 6 years ago

    Our case for respectrospective CHC has been referred by the Ombudsman back to the NHS after all procedures exhausted. The NHS wrote to us to say they were carrying out a “desktop review” and would write to us by the end of September. Needless to say we have heard nothing. The Ombudsman said the case would be closed whilst this is ongoing – which we feel is odd as nothing has been resolved and the NHS have not responded within their promised timescale. We have informed the Ombudsman of a non response by the NHS. Is there anything else we can do?

  76. Chris H 6 years ago

    Surely the Govt should put a response time Charter for the review.I feel we’ve just been fobbed off say 18 mth to 2 years because of volume. Then what happens, they loose the papers, it is passed to another dept to deal with or not accepted then you have to go through a review process where no doubt the clock starts again! How can we escalate our case and should the PCT not be under same rules as others. If in my business you get correspondence claims,one has to deal with them in a certain time otherwise the customer can go to the Ombudsman

  77. Tracey 6 years ago

    Following a full assessment in Jan 2013 we wrote appealing the decision on CHC in April 2013. Apart from their sending us a questionnaire as to our reasons for the appeal in May, we heard nothing til Sept when we chased them again. Now after more discussions they are doing a needs review and have said they have “paused” the timescale while they get documents. However, more than 3 months have passed and this is the first we have heard of timescales. What implications, if any, does this have?
    Many thanks
    Tracey

    • Angela 6 years ago

      Thanks for your comment, Tracey. Keep chasing them. Sounds as though they’re stalling and deliberately obstructing the process. All they have to do is get hold of care notes and other key evidence that is usually fairly readily available.

  78. chris 6 years ago

    Before the deadline we also requested a retrospective continuing health care review for my husbands Grandmother ( sadly deceased).She was assessed at first as residential care funded by social services then reassessed as nursing care funded by social services. whilst in care she contributed all her pension/benefits and was left with a personal allowance. At no time was continuing health care offered.Her health deteriorated in which she was in a comatose state and peg fed, totally reliant on experienced nursing staff. We did contact the PCT who confirmed they had recieved the application .
    After 6 months we still had not heard anything so we contacted them again only to be informed the matter had now transfered to theClinical Commisioning group. In sept the matter will be with the authorities for 1 year. Any advice on what the next step should be.

    • Angela 6 years ago

      It sounds like the NHS has failed to act properly in assessing her when she first needed care. Being assessed as needing ‘nursing care’ means she should, in theory, at least have received the weekly Funded Nursing Care payment. The restructuring of the NHS into CCGs is no excuse for the authorities to ignore your claim – regardless of what they may say. You could contact the regional NHS National Commissioning Board and highlight the lack of response by the CCG.

      • chris 6 years ago

        Thank you Angela

        will do

        will post here how we get on
        Thanks again

  79. Angela 6 years ago

    Thanks for your comment Melissa. You’re not alone in finding the process so slow. If your claim has been going on since 2008, though, that’s an awfully long time. Maintaining contact with the Continuing Care Team at the relevant Clinical Commissioning Group (CCG) – formerly the Primary Care Trust (PCT) – helps, and it would be advisable to ask them why this is taking so long and when it will be concluded.

  80. melissa bull 6 years ago

    i have a continueing care home review in progress for my late father who died in 2008 and the claim has been open since then for i am told wrongly paid care home fees the family home had to be sold to pay the balance why is the claim takeing so long??? i cannot lay my father properly to rest as its all still in the air

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