Has your retrospective claim for care fees been rejected?

Has your retrospective claim for care fees been rejected?

Has your retrospective claim for care fees been rejected?Many people with a retrospective claim for care fees (NHS Continuing Healthcare funding) are now finally receiving the outcome – but the funding decisions being made are not always correct.

If you’ve submitted a retrospective claim for NHS Continuing Healthcare, you may have had a long wait for any progress to be made. You may still be waiting. When you do eventually receive the funding decision, it may not necessarily be correct.

You may be told that your relative is ineligible for retrospective NHS Continuing Healthcare funding. We’ve noticed, however, that these decisions often contain serious flaws. This article highlights some of the things to be aware of if you’re in this situation.

In a retrospective claim for care fees these steps should be taken:

  • Your claim should have been reviewed by an NHS nurse reviewer, who should have looked thoroughly at all the relevant care notes, health reports and records, risk assessments, etc. for your relative – plus any information you submitted yourself.
  • The reviewer will have applied the principles of an initial Checklist assessment for NHS Continuing Healthcare to ascertain whether or not your claim warrants further investigation. Assuming it does, the reviewer will complete a document called a Needs Portrayal and should then apply to your case the eligibility criteria contained in the Decision Support Tool form. This is the form used in all full assessments for NHS Continuing Healthcare funding.
  • The reviewer will then make a recommendation about eligibility. Note – this is a recommendation, not a final decision. The final decision is made by a Clinical Commissioning Group (CCG) panel. When you receive the actual funding eligibility decision, and you find your retrospective claim for care fees has been rejected, be sure to request copies of the Needs Portrayal and Decision Support Tool – so that you can check that all relevant health and nursing care needs were properly considered.
  • Also, ask the CCG (reply to the person who sent you the letter) to send you information on every piece of evidence and information the reviewer looked at and everything the panel saw prior to making their decision. For the process to be open and transparent, you should see what evidence was actually put before the panel. If they say there’s nothing else to send you, and you feel that what you have been sent is not a true representation of needs and/or an incorrect decision, you can appeal.
  • If you believe your relative’s care needs have been played down or overlooked, write straight back to the Continuing Healthcare team at the CCG and state that you disagree with the outcome and will be appealing. State that you would like immediate action to rectify the situation.
  • If it becomes clear that the nurse reviewer did actually recommend retrospective funding, and yet this was then rejected by the panel – which means the CCG has overturned Continuing Healthcare eligibility and denied funding – you probably also have grounds to appeal. The panel should only overturn such a recommendation in exceptional circumstance. Again, write to complain. The CCGs decision will almost certainly be motivated by budgets, and yet that should play no part whatsoever in this process.
  • Unless you see the actual recommendation made by the reviewer (in the Decision Support Tool), you will not know if the panel has simply disregarded it.
  • If you’ve had a claim rejected, the whole review process may also contain the following three fundamental flaws:

1. The reviewer has assessed the ability of the care home to provide care, instead of looking at your relative’s actual care needs. This contravenes all guidelines. CCGs also often say that if carers are ‘competent’ then the care needs count for less. Again, this is completely flawed. The degree of competence of a carer does not in any way negate the health needs in question. Indeed, one would hope that the carers are competent! A Continuing Healthcare review is not about the ability of the care provider to provide care; it is about a person’s day-to-day care needs.


2. The reviewer has looked at ‘managed needs’ only (care needs as they appear once care is in place), and has ignored the underlying health and care needs (care needs as they would appear if no care were in place). This contravenes all guidelines.


3. The reviewer has written that care is ‘routine’ and so doesn’t qualify for funding. Again, this is completely wrong. Care can be ‘routine’ and still involve serious health issues. For example, care in an Intensive Care Unit is often ‘routine’ for the people working in it, and yet this doesn’t negate the severity of health needs for the people in that unit. The same principle applies in NHS Continuing Healthcare assessments.

Keep all these points in mind if your retrospective claim for care fees if rejected.

If you need to appeal, you’ll find information on the different stages of NHS Continuing Healthcare assessment and appeal here.

How long have you been waiting for the outcome of your retrospective claim for care fees?


  1. Lynn 1 year ago

    Hi Louise

    Thanks for your comments. No, I do not have a solicitor on board and am not sure if I need one at this late stage, as I have been doing it all myself up until now. I did ponder at the beginning about getting one to help me., but just went ahead and did it all myself with the help of my husband. Do you think that they look more favourably if someone has got legal help with them? I must admit I do find the task of sitting in front of a panel a bit daunting and not knowing or having the correct terms and words to come back at them!

  2. Lynn 1 year ago

    I have been many years in correspondence and had a telephone review in which my case was turned down. I appealed and finally my case was identified as requiring a full panel.

    I received a letter in November 2017 from Continuing Healthcare in my area, saying they are limited in resource and cannot advice on a date for an Independent Review Panel. This is now 7 months ago and am still waiting to hear back. Is this the normal amount of time other people have had to wait?

    Would appreciate a response from anyone else in my situation.

    • Louise Russell 1 year ago

      Hi Lynne – have you got a solicitor helping you? I won after my face to face interview (after refusing a telephone one). I started my claim in 2012 and was only awarded the full amount in early 2018 – it takes ages! This is where the solicitor is good as they push about the time delay. When I went to my face to face resolution meeting they apologized for the delay (due to so many claims) and the fact they had to put the claims to outside agency panels. Luckily mine was one that had been put to one of these panels and they were obviously not doing their job very well as they had not assessed my late father’s needs correctly. During my face to face they upgraded his care domains and awarded him retrospective Continuing Healthcare funding. Don’t give up – fight them! It may take time and I really believe they hope you will give in due to the time it takes, but don’t. x Louise

  3. Louise Russell 1 year ago

    Hi all – I started a retrospective claim in 2012 and won the whole amount in January 2018 – they rejected in twice and eventually I was given a telephone intervue which I rejected and asked for a face to face and this is what won me the claim ! Yes they do try to wear you down but don’t give up ever ! Even my solicitor started to think I didn’t have a case ? I knew I did and despite no care home records ( had gone missing) I carried on. Please anyone feel free to contact me as posts on this website really helped me prepare for my face to face – I knew this was my one opportunity to get the facts across – a lot of my evidence was purely verbal too due to lack of records. Do you see it can be done – nearly drove me crazy but where there’s a will there’s a way. x Louise

    • Kim 1 year ago

      Hi Louise,
      Thanks for your post and positive point of view. The Independent Review Panel has advised the local Trust that they need to perform a retrospective review, but as yet (2 months later!) we have had no contact from them. I am asking NHS what the procedure/rules are for restrospective review, but from reading the comments here, I am thinking it take as long as it takes! I will keep in touch and feel motivated by your comments. Kim

    • sheila jones 1 year ago

      Like a light on a sad day i read your article and is pushing me on again. Case started 2012. I have also believed that what I can say can only help as many records have gone astray even at the time.

      • Louise Russell 1 year ago

        Hi Sheila – please don’t give up ! I nearly did but did my home work and saw them face to face – what you must keep pushing for is the fact that they can’t look at needs being managed to make an assessment – they must look at needs before they are managed and if it is [overall a health] need then it it qualifies for continuing care .
        When I looked at my late father’s needs and their assessment (no need for NHS Continuing Healthcare funding) they were basing it on how the hospital/nursing home were dealing with his care. I disputed this as they were not dealing with it and I was going in every day to help and living a nightmare because his needs were not being met. Keep quoting the NHS guidelines for Continuing Healthcare – “if the primary need is a [health] need…….. – they must look at that need BEFORE any intervention and if it is medical then it qualifies for Continuing Health Care Funding. Let them know you you know !!! Hope this helps – but please contact me for any more advice x Louise

      • Louise Russell 1 year ago

        Hi Sheila – just a quick question – do you have a solicitor on board ? X Louise

        • sheila jones 1 year ago

          Hi Louise- No I do not have a solicitor. I do have an Advocate who is helping with writing a few letters and emails.

    • Diana 2 months ago

      Hi all, I started my retrospective claim in 2013 when my mother, who has since died, was awarded CHC funding. Following a teleconference call with a Retrospective Review Team Nurse it was noted “NPD evidences challenging behaviour throughout enquiry period” but it was refused in 2017: “The RRS have evidence of a checklist being completed in 2011, which has been sighted by the Needs Portrayal Assessor when compiling the NPD.” It states on mum’s Social Services assessment that a checklist was completed but I have not seen it and a copy has not been sent to me by the panel who do have mum’s care home records. I also requested a copy from Social Services but neither the Council nor the local CCG have one. It also says “The RRS are unable to compare a DST which was completed in 2013 against the decision the MDT made in 2016.” I have appealed, the Independent Chair are in the process of following up some queries raised with CSU and I am waiting for a date for an Independent Review meeting. Does anyone have any advice for me?

  4. Mary 1 year ago

    After a three year wait I’ve been offered to go before an independent review panel , has anyone had any success following this route, the venue is in another county, making it hard as I do not drive and no public transport goes in that direction, advice would be appreciated.

    • Louise Russell 1 year ago

      Yes Mary I did, and had to travel also, but was worth it as got the full amount back! X Louise

  5. kevin 2 years ago

    I now find myself in the situation where many of my questions to my mother’s CCG and the remote comm.group they use to complete the Retrospective Review of Continuing Health Care are still un-answered. Some questions date back to Jan.2016 and they will not be answered because a Director of the comm.group has confirmed my case is closed!!!, they have done their bit and ditched my mother’s claim. Something simple as what documents and guidelines are you using for this RROCHC are ignored and when I highlight the errors in procedure as stated in documents listed by NHS England they are also ignored. How is it possible for two NHS groups to just say they have had enough of my questions and leave me high and dry and tell me to move on to the next stage. I am now trying to find out who the CCG’s in England answer to, NHS England have said it’s not them, the Ombudsman only get involved after Independent Review Panel, so who is it?..any ideas. My mother’s problems were all mental and she was totally reliant on others for everything….but that is not good enough for the comm.group. While in care my mother thought another resident was her dog and tried to pick them up!!!…this did not even get a mention under behaviour in the Decision Support Tool, hallucinations dont seem to matter to CCG’s. I would love to see a claim which passed first time, just to see what the bottom line is and compare that winning claim to my mother’s. I have reached the point now where I dont believe any figures published under the Freedom of Information Act which I posted previously, who is going to check if the 59,000 claims all received a fair and full assessment, how much has been paid out to ” successful ” claims? I know that my mother’s CCG reads the posts on this site and I would not be surprised if they are quietly grinning at the attempts of claimants such as myself to get straight answers to questions put years ago. What a disgusting way to treat people who genuinely thought they would get an honest review of their claim.

    • Sue Hardy 1 year ago

      I was so infuriated with the CCGs and Commissioning Support Units (CSUs), I’ve tracked down a document this document “About CCGs” at NHSCC.org
      It still doesn’t help me with the fact that all evidence states that the CSU should have the Decision Support Tool signed off by the CCG before rejection or approval and mine was not. Don’t stop your fight Kevin.

  6. Derek Lowe 2 years ago

    I have had a retrospective assessment carried out for my late mother in an attempt to reclaim care fees. The Multidisciplinary Team (MDT) recommendation was that funding should be awarded. However the CCG Panel downgraded 6 domains, 4 of which were Severe with only predictable explanations. The outcome being that a recomendation for funding made by the MDT was overturned. I am appealing the decision and any comments of advice to assist in this process would be useful.

  7. mary lavelle 2 years ago

    NHS England wrote to me re my late mother’s claim on 15th March saying they are waiting the file from CCG and will contact me in due course, does any reader know how long due course is?! this has only been dragging on for five years now.

  8. kevin 2 years ago

    My mother’s CCG have closed my complaints file because they say ” we have now exhausted the local resolution stage of the NHS Complaints Procedure “. This is news to me as I still await answers to questions sent in January 2017? It seems that this CCG do not want to answer the most basic of questions, here are some examples… ” What guidelines were used in the review of my claim “…..” Did everyone working on this claim stick rigidly to the rules or did any improvisation take place, if so what authority allowed you to improvise “……” Please state exactly where the NHS guidelines mention what medical evidence will be used “…” When did you inform me of what medical records would be used in this claim “. These are just some of the questions they will not answer and yet I have asked other CCG’s about guidelines and if any improvisation was allowed and got a list of NHS documents they used and confirmation that NO improvisation was allowed so what is the problem? I now have to ask again the Chair of the CCG Board to what is going on, can a Chief Exec. just close a complaints file just like that?, without checking what has been fully answered. It seems my mother’s CCG is prepared to pass the parcel as quick as possible and have someone else take the flak, that is unacceptable and given the salary this Chief Exec. gets, obscene.

  9. Sheila 2 years ago

    I have just been reading through the papers for my appeal to the Independent Review Panel (IRP) for the refusal of Continuing Healthcare (CHC) for my late mother after a retrospective review, I have now found a document called Needs Portrayal Document which scores my mother against all the domains as her needs as suitable for referral for full consideration for NHS CHC funding, yet the Decision Support Tool (DST) completed on the same evidence rejects funding. Can anyone explain why and is the Needs Checklist not helpful to our case?

  10. Andrea White 2 years ago

    Well, one year after lodging my Notice of Dissatisfaction (NOD) I have received a letter today telling me that I have been allocated a 30 minute telephone ‘meeting’ that will, and I quote, “give you the opportunity for a meaningful discussion on the issues raised. The Registered Nurse Practitioner will review your comments and share their clinical perspective, and the rationale for this decision. Your views will also be fully documented.” According to previous correspondence this NOD was being ‘reviewed by a qualified professional’ and they have made their recommendations. They have my objections, but it looks as if I will have this meeting ‘cold’ not knowing what their professional’s views are. How can I be prepared for such a meeting. I will be requesting a face to face meeting rather than a telephone conference, even though the location is a 2 hour drive away. The date they have set is 18th May and we are going on holiday tomorrow returning on the 9 May. To my mind 30 minutes isn’t sufficient and I feel they are just doing the process lip service and will reject it anyway, leaving it open for me to request an independent review to NHS England. Does anyone want to bet what my chances of getting approval at this meeting? I first started this process in October 2012. All I want is a fair, logical conclusion. If they can prove that the dressings prescribed for bedsores didn’t mean that Mum’s skin was compromised by being bed ridden and if they can prove that she suddenly became doubly continent after 2 years of being doubly incontinent I will accept their findings.
    I’d be really grateful for some advice please on how I can prepare to fight a flawed system with considered, legal argument and I’d also be grateful if anyone could let me know whether they have been successful on an internal review at a Local Dispute Resolution meeting. I’m getting very tired and distressed, but I will not give up.

    Thank you

    • kevin 2 years ago

      Hello Andrea, this may help. I have asked NHS England to tell me what guidelines should be used by CCG’s when conducting the Retrospective Review of Continuing Healthcare also known as Previously Unassessed Periods of Care. They stated that the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care is the STATUTORY GUIDANCE to be used. If you do a search for face to face meeting in this document it comes up with one entry on page 75, paragraph 31.2 that states a face to face meeting, teleconference or a written submission can be offered. Also paragraph 32.1 states that the meeting can take place in any setting but should be as near to the individual’s location as possible. My mother’s CCG comm. group offered me a face to face meeting at a location over 200 miles away at 1.30pm, as I use public transport this was not only inconsiderate but beyond belief showing no thought of what would be involved for me. I have told the comm group about this NHS document and await their reply. I have also complained in writing to the Managing Director of the comm group and the Chair of the Board of the CCG about the “actions” of their underlings and asked for a confirmation in writing that the CCG and comm group are sticking strictly to this STATUTORY GUIDANCE issued by the NHS . This document could well be something that CCG’s will struggle to admit that they have followed to the letter and is worth reading even though it is very long.

      • Sue H 2 years ago

        Hello Kevin
        I noticed an important statement in your reply to Andrea and would be grateful if you could clarify something for me please. Your statement was: “conducting the Retrospective Review of Continuing Healthcare also known as Previously Unassessed Periods of Care”.
        When referring to previously unassessed periods of care, my father-in-law failed two of the “initial Checklists” and was therefore not deemed to require a full assessment. I have made a retrospective claim and having received a letter have passed the first stage, the CCG letter had a paragraph referring to the fact that if, in stage 2, they find that there has been a previous assessment, the claim will be taken no further. Do they consider initial checklists to be assessed periods of care?
        Thanks, Sue

        • kevin 2 years ago

          Hello Sue, I am assuming that your father in law is still alive which would mean that your claim would be under different guidelines to my own. My mother died in 2009 so the claim fell into the Oct.2007 – March.2011. there were other time periods April.2004-Sept.2007 and April.2011-March.2012. If I were you I would get your CCG to quote precisely what document,page and paragraph they are using to make that decision. Just to confuse things further the National Framework document I quoted to Andrea that was a Statutory Guidance for all CCG’s does not contain any reference to someone who is deceased? Also my claim was submitted before CCG’s were invented and things were much different back then under the old system. Sorry I cannot be of more help but I would be interested to see how long your CCG took to tell you about their reference source, I asked my mother’s CCG some questions in writing back in Jan.2017 and still have not received an answer.

          • Sue H 2 years ago

            Thank you Kevin, my father in law died in 2014 and we had to sell his house to pay for care, as we were asked if he had any assets before they went through the motions of a check list. If had known then, what I know now, I would not have allowed the assessor to twist everything that was asked whilst completing her check list, but with all the smiles, she was better than a car salesman. I put in my first request for a review in March 2015. After two CCG teams from different boroughs playing pass-the-parcel with my case for a few months, one was compelled, by my emails, to take it on. I believe that, compared to many on this message site, I have been reasonably lucky to have received a written reply that we have passed stage one. My concern is simply the wording in the letter – does a preliminary “check list” equate to a previously assessed period of care?

        • kevin 2 years ago

          Hello Sue, I have found something that might be helpful regarding “Checklist”. The National Framework document I quoted to Andrea has multiple entries for Checklist as you will see if you do a search in this document. I originally did a search for check list which gave no results but Checklist gives loads. Page 25, no. 68 is a good place to start by the looks of it and best of luck getting a prompt written reply from your CCG if you ask for a precise reference.

          • Sue H 2 years ago

            Thank you Kevin

        • Amy CH 2 years ago

          Hi Sue, even if someone had a preliminary Checklist completed, it still means it was an assessed period of care. It is also likly that if you appeal this, the period under assessment (usually a year from the date of assessment) is unlikely to be found eligible for Continuing Healthcare (CHC) funding.

          Checklists are slightly different to the full Decision Support Tool (DST), which is needed when a Checklist triggers positive. What would score an A on a Checklist, may only score High and not Severe on a DST. Therefore, with the Checklists scoring higher, which is meant to give more people the ‘chance’ of funding’ by triggering for a DST, the scores would be low on the DST.

          It is such a complex system, I’m afraid, but having a lot of High scoring needs, does not necessarily make a person eligible. It is about whether they have a Primary care need.

          I’m a senior appeals nurse, who has been working on CHC cases for the last 6 years.

          • Angela Sherman 2 years ago

            There is absolutely no reason to assume that high scores in a Checklist would not translate into high scores in the full assessment. There is just as much chance that they will. Do not be put off by anyone trying to discourage you, Sue.

          • Amy CH 2 years ago

            This is not meant to discourage you, it was meant as an insight, and I agree that the scores on a checklist can translate into high scores on a Decision Support Tool (DST). What I meant to say is what translates as an A – can be lower on a DST (not will), although it needs to be assessed by the Multidisciplinary Team (MDT) and not just the nurse assessor. However, if a Checklist was originally found not to trigger positive, and appealed, it is unusual for it to go on to be found eligible for Continuing Healthcare (CHC).

            In my experience, DST appeals can be successful, but it is unusual to find a Checklist appeal overturned and then found eligible. It can happen, but it is not common. I have overturned many Checklist decisions due to poor weightings being applied, but if someone has a primary care need, it should be picked up at the Checklist stage and you would hope that the assessor had the sense and knowledge to recognise this. Sadly it is not always the case!

            I would suggest appealling this as a retrosepctive claim, and not a Previously Unassessed Periods of Care claim and hopefully it will be properly assessed.

          • Angela Sherman 2 years ago

            Everyone has a different experience, but I have worked with many families who have challenged the outcome of the Checklist, had the Checklist result overturned and then gone on to secure full Continuing Healthcare funding at the full assessment stage.

          • Kevin 2 years ago

            Could you please explain why nurses are used to judge claims and not doctors?. I would not accept a diagnosis from a nurse over one from a qualified doctor if I were ill, so why should I accept a summary of events via a Decision Support Tool by a nurse who never met my mother over an assessment of all medical evidence by a qualified and experienced doctor who knows about mental illness. I find it very annoying that my claim for £128,000 care home fees plus compensation for being forced to sell my mother’s property is going to be judged by nurses and it is my job to highlight their mistakes and inform the comm.group and wait for months if not years to get an explanation of these “mistakes”. You state you are a Senior Appeals Nurse so please tell me who gives you instructions about assessing claims, what is their rank and position in the big scheme of things, what NHS guidelines do you follow if any. NHS management is a wilderness of mirrors, everywhere you look you are diverted to someone else and it seems to me that nurses may well be made scape goats for the failure of the Retrospective Review of Continuing Health Care and the Previous Unassessed Periods of Care schemes to give claimants a Fair and Full assessment of their claims.

          • Amy 2 years ago

            Hi Kevin, you correctly state that you would not accept a diagnosis from a nurse, neither would I, however I would not ask a doctor about a person’s care needs as it is ikely that they would not have experience of this. It is nurses who provide the hands on care in nursing homes, hospitals and in the community, and the doctors who make a diagnosis on an illness and prescribe the medication/treatment. If you go into a hospital and ask a doctor ‘how often has mum eaten today?’ or ‘did she need help to dress?’ a doctor will not know and turn to the nurse for the information. If you asked a doctor about the actual medical condition: diagnosis/treatment/prognosis then they’ll be able to discuss this in detail with you. In hospital or in the community it is a registered nurse who assesses the care needs of an individual and writes up the care plan, not the doctors. The doctors will only diagnose and recommend treatments which the nurse usually undertakes. We provide the actual care and this is the whole basis of any Continuing Healthcare (CHC) claim.

            When I carried out live CHC assessments for people with palliative care needs to ascertain if they could be Fast Tracked – most of the doctors didn’t know anything about CHC process. One doctor I spoke to never realised his patients could have funding for rapidly deterioating end of life care when I was trying to set up Marie Curie nurses for the patient and asked for his assistance.

            The CHC process is about care needs and not diagnosis, which is why nurses are used. Nurse assessors can only be employed if they are a senior banding (Band 6) and have had at least 3 years experience. I was a district nurse for many years and then a Marie Curie nurse providing palliative care in individual’s homes along with hospital experience. This has given me a background to base CHC assesments on. I had to undergo rigorous training prior to starting and all nurses have to abide by a clinical framework. To undertake a rerosepctive assessment (when a patient has died) takes a week or more to compile, depending on the length of claim, and doctors simply don’t have the time and care needs are something that nurses are used to assessing.

            The NHS have taken so many years to review the cases becasue they were simply overwhelmed by the response with four times as many claims as they anticipated. This is why it has taken so long with many claims taking up to 4-6 years to review. It is not right! We know this and it should not take so long, but there are only so many of us. There are not enough skilled nurses to undertake the assessments and as it is a job that receives a lot of negativity, it is not a job that attracts many nurses. As a result, those who do come into soon find they are talking to irate family members who have had to wait so long and don’t understand the process fully (which is not surpising as it is so complex) and they leave soon after. The turnover of staff is horrendous because we are uncertaking a very complex process, drowning in work and have thousands of appeals – mainly from solicitors trying to cash in.

            When we write up an assessment it is evidence based and then a social worker also has to review the case so that a decision is made by two care workers. This is then sent to a Band 7 clinical nurse to validate for accuracy to the framework prior to a draft copy going to the client. The reason it is sent to the client is to add comments to the summary in each domain. Within my organisation, all nurse assessors telephone the clients and inform them of each stage and let them know that the summary in the assessments may differ slightly to the client’s perception. This is usual and taken into account when making a recomendation. We don’t expect to know the person being assessed as well as their relatives, which is why I always call and ask if there is anything they would like me to explain or discuss with me. We can only go by the evidence we have in front of us and we are fully aware how care home records are not usually of a descriptive nature. For example daily care notes usually state: “continence needs met”, this does not tell me whether a person is doubly incontinent, has urinary and wears pads or was assisted to the toilet. This is why we talk to the family and record this in the evidence. I cannot say this is the case with all nurses but it is within my organisation. Then the assessments and evidence is presented to a panel of Band 8 Clinicians who decide on whether funding should be allocated. There standards are extremely high and if not up to suitable levels is given back to the nurse assessor to redo.

            I can understand your frustration, but believe me when I say it is not an easy job and we tend to be judged very harshly. Personally, I would not want a doctor going anywhere near a CHC assessment for me. Most of them have heard of CHC but have little concept about the process. Try it – ask a GP what he or she knows about the CHC process. I would bet my last dollar that they would possibly have heard of CHC but not be able to tell you about the process. They would ask you speak to the District Nurse instead. Another doctor I spoke to, when invited to attend an assessment, said to me “what do you think I can contribute? I don’t know what Mrs XXX’s care needs are, I’ll send you a print out of medical history and prescriptions and that will have to do.”

            From my perspective, relatives are not asked to point out mistakes in an assessment but provide their point of view and we do take any comments into consideration. We are also impartial and do not try and favour one side or another. It is purely based on the complexity, intensity, nature or unpredictability of a person’s care needs.

            It is difficult because there are a lot of nurses out there who do not compile robust reports and they end up in an appeal. I have overturned many cases where a person was found not eligible when clearly they were. A person can have low scoring needs but still be extremely complex to manage. It is not as straight forward as checking for a specific number of high scoring domains. There are not enough nurse assessors and I am bounced all over the country to manage to more complex or challenging cases. I usually end up working with the same group of independent assessors as we are so few, there are only a small number of what I would class as excellent and expereinced CHC assessors. Many of the appeals have poorly written assessments from inexperienced nurses and there lays the problem. How do we get the nurses experienced without undertaking cases? The NHS are desperate for more assessors so pay a premium for agency nurses who at times, have little experience, but cannot employ full time nurses because no-one wants to do the job. We certainly don’t get boxes of biscuits and choclates most weeks from grateful patients and are left with warm, fuzzy feelings! The whole systrem is a complete mess, but have to continue with what we have until the backlog is complete.

            I know you do not feel that nurses are qualified enough to assess claims, but I would defy any doctor to carry out a robust needs based assessment to an acceptable quality that would stand up to panel standards. Please do not judge all of us as incompetent nurses who are on the side of the NHS and write whatever we want without following a framework. We have to remain impartial and if there is a primary care need then we usually fight tooth and nail on behalf of the client. Unfortunately, there are good nurses and bad ones, just as there are doctors, and it is just as frustrating for those like myself who find themselves reviewing a case that has been handled poorly. We hate it just as much and it is easy to see why the NHS gets a bad press when some assessments are dreadfully written.

            I would love to be able to show you the thank you cards and flowers I have received from clients that I have helped with successful appeal claims for keeping in contact with them and writing such comprehensive reports taking into account everything that the family have informed me. It doesn’t happen often, but occasionally we feel the job is worth doing.

            Working as a lead appeals nurse assessor is much harder than my time with Marie Curie in palliative care. I went from being a caring ‘nursing angel’ who the public appreciates to ‘tax collector’ status overnight. We are not against you and if it were up to most of us we would give everyone funding, but it isn’t and we can’t. I’m sorry you have had such a bad experience. It’s not great by any standards but we are all fully aware of it.

          • Kevin 2 years ago

            Hello Amy, My mother was sectioned under the Mental Health Act Sect.2 by a Psychiatrist and a GP in her own home. She was sent to an assessment hospital and assessed by Doctors and when put into a care home she had regular written assessments by GP’s and Psychiatrists. All these people are fully qualified to do an assessment because they saw my mother face to face and put their findings in writing. Try and imaging my horror at seeing a Decision Support Tool completed by two Registered General Nurses, a Registered Mental Health Nurse and an independent lay panel member none of whom ever met my mother, that is a disgrace and the Board members and Managers at the commissioning groups should never have allowed that to happen. I assume that all the CCG’s and various comm. groups were under orders from NHS who themselves were under orders from the Goverment of the day way back when in 2012 and somebody somewhere said… No more than 10% successful claims for the Retrospective Review of Continuing Health Care (CHC)… that is what it seems to me. Of course if the NHS published full financial figures for RRoCHC we could see exactly what was paid out to successful claims and how much was spent by CCG’s and comm.groups in administration but that will never happen until the media get hold if it. It would have probably been much “cheaper” for the Government to say… Pay back the care home fees to all 60,000 claimants and we will get some back in taxes anyway and we will save millions in administration costs for the 211 CCG’s in England… I will always believe that the system for reviewing claims was flawed from day one and unfortunately nurses of various qualifications have been pushed up front to take the full force of claimants anger while Board members and Managers of the Clinical Commissioning Groups just shuffle financial data around until it’s time for promotion or bonuses to be decided. Finally it is coming up to a year since I submitted my Notice of Dissatisfaction against the comm. group and all my questions regarding the Decision Support Tool findings revolve around the opinions of Nurses who are doing what they are told to do by Managers in preference to written diagnosis by Doctors and Psychiatrists who actually saw my mother face to face…. Deja-Vu.

          • Sue Hardy 1 year ago

            Hello Amy, thank you for all your advice. I wonder if you would have the answer to one of my questions, having worked in this arena. When a retrospective review case is assessed, the CCG can appoint an agency as the Commissioning Support Unit (CSU) and the Decision Support Tool (DST) is produced. Looking at all the information provided by the NHS on NHS Continuing Healthcare (CHC), the CCG have to have the final approval of the DST before the decision is sent to the applicant. The DST we received has been signed off by two nurses from the CSU and not endorsed by the CCG. Is this your experience? Thank you

      • Andrea White 2 years ago

        Kevin – thank you very much, that’s really helpful and will give me some jolly holiday reading. I wonder how long the appeal process takes? As I truly believe the outcome is a foregone conclusion.

    • Louise Russell 2 years ago

      Hi Andrea – I started a retrospective claim for my father’s nursing home fees in 2012 and after 5 years wait they decided he wasn’t eligible! My solicitor appealed and I was offered a telephone resolution meeting. I declined this and asked for a face to face – I had to travel 300 miles for the meeting but it was worth it as the chair of the meeting listened very carefully to my arguments and looked at evidence I brought to the meeting and despite the fact all care home records had been destroyed we won and have had all previous decisions overturned and I will be receiving a full refund.
      Don’t give up but demand a face to face meeting. Mine lasted 2hours and I really did my homework as I had almost given up hope . If you need any advise please contact me ? Regards Louise

      • Andrea White 1 year ago

        Hi Louise, Firstly very many thanks for your reply – it was heart warming to hear that you have been successful. I had a telephone review in June last year when the only answers they gave me were that there was no medical evidence to support my claims. There was photographic evidence that my Mother had nutrition and bedsore issues. Even the ‘probability theory’ that if she was doubly incontinent in 2005 it was a pretty good bet that she still was doubly incontinent in 2009. I received a letter dated 4 June 2017 stating the negative outcome of the telephone review and that I had 6 months to appeal. This deadline has now passed. Is it worth having a go at this late stage or have I missed the boat. I would be really grateful for advice on this and also whether I should employ a solicitor. Despite my tenacity in the past I fear I have now let them win. I would really appreciate your advice Louise and thank you once again for replying to my post. Regards Andrea

        • Louise Russell 1 year ago

          Hi – I’m so sorry for the late reply as didn’t see your post until today. Don’t ever give up ! I did have a solicitor on board but apart from the initial tooing and froing of letters they suggested I didn’t have a strong case ? Well it just shows if you go armed with evidence and a lot of mine was verbal – face to face is a must – good luck after 5 months since you posted maybe you have an outcome.

          • andrea White 1 year ago

            Hi Louise – no worries re the delay, I’d love to report a result, but ill health has delayed taking the review further. Unfortunately, I fear that my mother’s case is now closed as the phone conference was last June. How quickly a year passes! It looks like I’m one of those whose tenacity after 7 years of battering has finally faltered. I think I will write once more asking for a face to face, though I fear my chances are very slim. I might also ask what their complaints procedure is so I can pursue it that way, they messed up on so many levels like lying about deadlines and making decisions and not informing me until 4 months later. Has anyone else made a formal complaint and got anywhere?

      • Sue H 1 year ago

        Hi Louise, well done for finally winning the case. Today I received the letter from the NHS Retrospective Review Service advising that my late father-in-law did not meet the criteria for NHS Continuing Healthcare Funding. He was wheelchair-bound, double incontinent, and suffered Alzheimer’s. He had a history of falls out of the bed, inappropriate verbal and physical issues, extreme weight loss and sores. Yet the NHS review were so sneaky when applying their weighting’s. An example being that, if you can co-operate whilst being hoisted from chair to bed, you are considered only “moderate” in the MOBILITY domain, even though he couldn’t walk one step. His double incontinence was also down marked to “moderate”. He had a catheter and numerous UTIs, but they concluded “continence care is routine”. I prepared all the documentation myself and they had every piece of evidence. I cannot believe they can downgrade by twisting terminology in the domains, to ensure they do not have to provide funding. Within the covering letter, it informs me I can only dispute the process, not the scoring. Can you advise the process of appeal you made, and to whom. thank you

        • louise Russell 12 months ago

          Hi Sue – after my post I have received so many replies and not sure if I replied to you – but in answer to your question you can dispute his scoring as I did and they upgraded 3 domains – bringing my dad into Continuing Healthcare and that’s why I won the case. My dad like your father in law had all the same issues and this is where you must ‘go for them’ as they should not look at how these are managed but what was he like without them being managed – this is what I kept saying at my resolution meeting and they caved in! My late dad’s needs were just the same as your late father in law’s – hope this helps. x Louise

    • Louise Russell 1 year ago

      Hi Andrea – how did your local resolution meeting go?

      • Andrea White 12 months ago

        Hi Louise, – well not much to report except that NHS England have declined an Independent Review as I am outside the 6 month deadline to respond. My fault, but I had been hospitalised and to be honest the emotional effect of 5 years of fighting had worn me down. I wonder if this is worth pursuing? Any advice from anyone would be gratefully received. I have now received the complaints procedure from [the CCG]. So I have now written to them asking what their procedure is. But this can only be a complaint about how they handled my application, not the outcome which I still strongly disagree with. How can a photograph of a 4 stone, elderly lady prompt the response – we have no medical evidence that she had nutritional issues?

        • Louise Russell 12 months ago

          Andrea – please don’t give up ! Tell them why you are outside the 6 months due to being in hospital yourself – yes they do try to wear you down and I know just how you feel as I was warn you a frazzle and was almost giving up after 7 years -thats what they want. I had no nursing home records either and the hospital ones were pitiful. I knew what state my dad was in and how thin he was – we did have reports from the nutritionalist but they were ridiculous saying he could swallow etc – but he couldn’t! Hence the weight loss – he went from 13 stone to about 6 stone ? The nursing home had lost or destroyed his records so made a written statement (my solicitors said this weakened my case) as they appeared to be managing his needs – but I insisted that they look at his needs before they were managed (they were not actually managed). Why would he lose that much weight if his needs were managed? Sorry if I am ranting but feel strongly about this!

          • Andrea White 12 months ago

            Hi Louise thank you for being so indignant on my behalf – I told them I had been in hospital and deeply affected by the whole process, but they said no – outside the 6 months. How can you put a time limit on such a travesty? Thank you also for sharing your experience. I will go to a solicitor and ask his/her opinion. Unfortunately the solicitor who I first employed is now too busy with like cases and cant take me on again 🙁

            Thank you once again and I will keep you posted.

          • Louise 12 months ago

            Hi Andrea – thanks for your reply and keep me posted – good luck x Louise

  11. Claire M 2 years ago

    If we’re successful in a retrospective claim for my mother could we include the thousands we spent on an annuity bought from AXA, as recommended at the time by Age UK? It was specifically designed to pay care home fees and we certainly wouldn’t have bought it if the Continuing Healthcare (CHC) had been funded earlier. CHC was then awarded just three months after we took the annuity and there is now formal agreement that Mum should have been getting CHC from the start of her time in a nursing home. We had a duty under Power of Attorney to make the best financial and care decisions for Mum, but have lost potentially tens of thousands in trying to do this.

  12. Mel 2 years ago

    I got the decision of the Local Dispute Resolution Meeting today.

    They still refuse making a ton of excuses.

    I now will take it to the Independent Tribunal. However, I am on benefits and cannot afford a solicitor. Can anyone help please?

    Many thanks

  13. mary 2 years ago

    I appealed to NHS England months ago, I’ve heard nothing for months. My appeal started two years ago, my mother had been in care five years and died in 2015 . Presumably CCG hope I too will die!

  14. Mel 2 years ago

    In March I went to a local resolution hearing re my mother’s retrospective Continuing Healthcare. The nurses seemed nice and to be fair didn’t try to change our minds. However, our local Social Services apparently refuse to attend and when it goes to appeal, as I guess it will, they draft in a Social Services worker from another county.

    I cannot understand how someone who didn’t know my mother can possibly support her case? Sounds rather like it will be a bit of a whitewash to me.

    With regards the Local Dispute Resolution Meeting; they said we would hear within 4 – 6 weeks. We havent. Any idea how long a decision usually takes at this level? Or is it like a length of string?

  15. Joanne 2 years ago

    About 3 months ago I posted on here about our restitution claim being rejected. We went to appeal and it was rejected so we appealed again. Today we received a letter saying that we have been found eligible. I can’t thank you enough for all the advice on this website, it has been invaluable. We are so happy with the outcome but it has been harder than we ever expected. Thank you again.

  16. Stacey 2 years ago

    Dear Myra,

    I would advise you to make a request under the “Access to Health Records Act (1990)”, requesting copies of the notes that you require. As the identified Next of Kin or Executor of your Father’s will, you should have sufficient authority to request these. There may be a small charge for the costs of producing the notes, but these are limited by law to £50 for health records. The home will have 40 days to provide the information to you, otherwise they will be in breach of the Act.

    If the home refuse to release the notes to you, you can appeal to the Information Commissioner, who can compel them to release the notes to you.

    I hope that is helpful.


    • myra comer 2 years ago

      Hi Mary, Thank you for your email and I apologise for the late reply. I am getting nowhere fast. I have spoken to the Information Commissioner who told me there is nothing they can do to help. I explained that there had already been a request for them to act whilst my father was alive. The owners of the home are doing everything to stop me from getting these notes and I cannot understand why. I have spoken to someone today who tells me that if there had already been a request and the home have said that there is no Power Of Attorney insitu, that they do not have to release the care plan. I am going round in circles and it is making me so ill I just don’t know what to do. Why are they (the home) able to do as they please, this says it all as they still haven’t released the notes. Who do I go to next? Does anyone really care? It would seem that from all the complaints I have made about this Home have been ignored. I would so appreciate some help here but don’t know who to go to next. Kind Regards, Myra

  17. David Jolly 2 years ago

    Hi sorry I forgot when we had to pay care home fees we had a deferred payment scheme with the local authority but they made us put a charge at our cost at the land registry so we could not sell unless we paid them back. I have been reading a document from the NHS about redress guidance dated 1st April 2015, Para 4 saying where people have suffered a maladministration resulting in financial injustice the principle of redress should return them to the position they would have been in, had their had their Continuing Healthcare (CHC) been granted at the time and the CCG can make a ex gratia payment over repayment plus interest and the Ombudsman is aware of this.
    After all if they had granted me CHC I would not have had to sell the house with this charge on it. Has anybody any thoughts on this point?

  18. David Jolly 2 years ago

    I have your ebook – very good. I engaged a no win no claim solicitor to fight my mothers retro claim. She was hospitalised after suffering a C.V.A. The Consultant said we wouldnt cope with looking after her (we had hoped to sell both houses and buy a bigger house with granny annex), as her needs were too great which shocked us as he said if your worried about your inheritance people do not last long usually. Well my mother lasted 5 years before passing away in 2010,so already money was rearing its ugly head! We didnt know about discharge assessments into a care homes. Local authority was involved and like many others thought we had to pay, nor did we know she should have been assessed yearly she was nt not until 3 months before her death when someone slipped in quietly and did one not notifying me her rep (P O A). They did a report that makes me think I think they got the wrong person. My mother was wheelchair bound, doubly incontinent, deaf, none compliant with her catheter it hurt so kept pulling out, didn’t understand where she was, hoisted out of bed washed etc, could not pull herself up in the chair, slipped out at least once and found on floor. According to the report was wheeling herself down to the lounge taking part in the bingo having chats enjoying her food (why did she need supplements etc) losing weight. A complete pack of lies. Anyway my situation now as executor is CCG refused to accept from Multidisciplinary Team (MDT) the recommendations but finally had to bow to National Framework revised should accept all MDT decisions, so I have had a partial result of them paying the first 2 years 3 months but not paying the final 2 years 8 months. My mother didn’t suddenly get better; obviously she got worse until her death, but strangely Behaviour and Continence were downgraded from high to low, Altered States always low (even though she though she was at school where she worked as a cook and the gardens of the home were the park). Clearly she didn’t know where she was. So now the solicitor has written to me saying he will have to review the case to see if I have a chance of appeal . My thoughts are hell yes if she was thought to be bad enough by the MDT in the first half then surely she was in the later 2yrs 8m. Reading on your site and comments from others I am going to appeal and I am going to dispute their version of events, but I’m not giving up now.

  19. Myra 2 years ago

    Hi, I am at breaking point regarding my late father’s care plan notes. Having received a reply to my formal complaint I am no nearer to getting dad’s notes released. The care company did in fact agree to allowing the Solicitor notes for 18 months and no more. Got in touch with Solicitors to let them know then did not hear anything for several weeks. Now, the home has changed its mind again regarding the notes and has informed solicitors , now I am back to square one. Solicitors rang to tell me almost two weeks ago so it would seem that they (solicitors) want me to do their job and get the notes. Apparently, according to the office manager/carer it is too difficult to find the notes as they are in the archives and unreachable. I have tried other bodies to assist but they all tell me there is nothing they can do as they cannot make the home release the notes. But, somebody must be able to demand the notes as I have been informed the home have to keep them for 7 years??
    For what if they won’t release them to anyone? I do not want to give up as my dad should never had to pay his own fees and I am trying to do what my dad wanted before he died. The Solicitors made out that once they had the notes they could move forward and get dads fees back…..it is almost two years now. The Solicitors have done very little apart from a couple of letters and phone calls. Don’t know what to do or who to go to ask for help. I would be so grateful to actually speak to someone who knows what they are talking about. I have had a breakdown due to all the hassle and upset and still receiving counselling for this but it will take time if I am ever going to get back to normality. This “Care Home” have got away with so much and yet they are still taking poor residents in and feeding them slops. Not sure what to do next now as I am continuously hitting a brick wall. It would seem this “Home” has more lives than a cat, but I must admit the cat does get fed better than the residents. Kind Regards,

  20. Andrea White 2 years ago

    Me neither. The CCG say that I requested a teleconference, but I have no record of this and I will definitely make the 2 hour trip for a face to face meeting – with my phone on record. I’ve tried to find out whether I will be given a summary of the ‘qualified professional” report before the meeting so I can go prepared, but they aren’t saying anything – just that I will receive a letter to organise a mutually convenient meeting. I too am collating all the evidence of mal administration for future reference. Do you think our tenacity will pay off?

    • kevin 2 years ago

      Will tenacity pay off, morally yes, financially maybe. I fully expect that this Retro Review will crawl along at a snail’s pace until the media get hold of it. I am going to keep everything I have on computer and hard copy regardless of the final outcome because the claimants who have accepted rejected claims may well feel cheated by their CCG’s decision once the media start to dig deep and expose very dubious practices by all concerned. All information we collect today may well be vital for future investigations so keep on digging. Way back in Sept 2012 when I submitted my claim for £128,000 care home fees and compensation for being forced to sell my mother’s property I am sure someone picked this claim out and marked it “do not allow this claim to be successful under any circumstances”. Is that paranoia on my behalf? I dont think so. Because of the huge amounts of money that should be paid out to worthy claimants the “reviewers” have an incentive to keep successful claims to an absolute minimum, it is called promotion, or maybe a bonus for reaching your targets, who knows , but that is what it looks like to me.

  21. Andrea White 2 years ago

    Hi Kevin, your fight seems to be running parallel to mine. Original application in October 2012, decision to refuse received April 2016; Notice of Dissatisfaction sent 27 May 2016. The last communication I received was that they have received the report from “their qualified professional” (only one I ask myself!) but have as yet to write up my mother’s case file. Once this is done they will contact me for either a telephone conference or face to face meeting before finalising the report. It’s their hope to complete all (please note the all!) such cases by the end of March 2017. Obviously I m not holding my breath. So, in answer to your rhetorical question I reckon it is a deliberate tactic to make people give up or die before resolution; obviously poor management but hey its a gravy train that is costing millions of pounds in CCG costs whilst delaying payouts, or refusals. Of course they are going to take as long as possible or the gravy train stops. Cynical? You bet I am, and all the while NHS funding is being crippled! As you say Kevin, the fight goes on.

    • kevin 2 years ago

      Hi, I cant understand the telephone conference set up? I have looked for this in various documents and have only found a reference to a trial use of this system. Is it legally binding, will it be recorded, do you get a copy of this “meeting”? I abandoned the use of phone calls to the CCG/CommGroup a long time ago because they always fob you off with “someone will ring you back” mantra. Putting questions in writing and sending by recorded delivery has been very revealing for me as the CCG manager answering has revealed information that has opened up another can of worms to be investigated. I am currently only writing to Board Members and the Complaints Dept. who probably have a job for life while I find more faults in their system. When the CCG do write to me with their explanation of their actions I want to know under what NHS guideline they are working so I can check for myself, with a telephone conference it could be all apologies and bluff or deception. It is a shame that it has come to this when back in Sept.2012 it seemed a fair way to try and settle the Care Home Fees problem, now it feels that the CCG’s are rubbing salt in a very open wound.

  22. kevin 2 years ago

    Latest fiasco update about Dissatisfaction, I have received an update from a Boardmember regarding my dissatisfaction claim. He states that the CCG waited till a contract monitoring meeting with the Comm Group in Feb 2017 to discuss my concerns…they have had this dissatisfaction claim since the beginning of Aug 2016?…what have they been doing for seven months? I have now resorted to asking for a detailed timeline of events from Aug 2016 up to present day from the Comm.Group concerned who are not part of the CCG but a separate group recommended by NHS England. I want to know who had my claim, for how long they had it, what specifically they were checking, has it been sitting on a desk ignored, what has been going on in detail. I have recently gathered all my evidence together,all correspondence from CCG, all medical evidence from NHS and Care Home,all NHS guidelines regarding Retro Review, everything since Sept 2012 when this review started and I read every word on every page. It took less than 3 hours to read all information so what is taking so long from the Comm Group, will I ever find out, I doubt it. As unacceptable delays are common across all CCG’s in England is it a deliberate tactic or another clear sign of poor management by CCG Boardmembers and the faceless wonders at NHS England, the fight continues.

  23. andrea White 2 years ago

    Further to my last post – the offices of the Commissioning Support Unit (CSU) are a 2 hour drive away!

  24. andrea White 2 years ago

    Now I’m really confused. This is the reply I have received from the Commissioning Support Unit (CSU) following my request to be told the outcome of their ‘qualified professional” (I wonder what they are qualified in?) report and what their decision is.
    “When a case is returned from our qualified professional the results need to be typed into our patient records. When this is done a letter will be sent out to you to arrange the conference call or meeting so you may discuss the findings of this. Unfortunately we haven’t completed this stage as yet but will be doing so shortly. If you would prefer a meeting to discuss this we will arrange this at this office at a mutually agreeable time with yourself and/or your legal representative.”

    When I said that it would be difficult to discuss things when I didn’t know what the findings were, I received this reply:

    “The meeting or teleconference is for us to discuss these findings and also it is for you to let us know if there is anything else that needs to be taken into consideration. The report is not finalised until after this meeting and we will send a copy to you as well.”

    How can I go to this meeting without knowing what there is to discuss? Should I get some indication as to the ‘qualified professional’ findings before the meeting? Or do I just revisit my 2 inch thick file and pull out all the relevant details? I get the feeling that they just want me to give up. Hell will freeze over before that happens!

  25. Andrea White 2 years ago

    I think I may be approaching the end of the road, but would like some advice please. This is following my original claim for retrospective funding for my mother’s care fees made in 2012 and refused in 2016. I lodged my Notice of Dissatisfaction on 27 May 2016 and after chasing I received the following response:
    “I can inform you that this case has recently been returned from investigation by our qualified professional and we will be contacting you shortly to arrange dates for the telephone conference call as requested by yourself.

    I would like to apologise for the length of time this has taken and can assure you that we are working towards a target of the end of March 2017 to finalise the majority of these investigations.”

    Firstly, I have no recollection of requesting a telephone conference, but my file is so thick and it all started such a long time ago that I just don’t know. If it is another refusal, wouldn’t they just write and tell me so? Is this part of the procedure? I haven’t attended a panel or a hearing or been given the chance to verbally contest their findings, although I have done this in writing . Am I within my rights to request a face to face meeting – I don’t want to be caught back footed on the phone with no witnesses or chance of recording what is said.
    I was naive enough to expect a fair, unbiased conclusion made on the evidence presented, but the Commissioning Support Unit have used ‘no evidence’ from the care home as an excuse to refuse my claim. They didn’t use the common sense, probability, approach like if the doctor prescribed dressings for bed sores, it would be pretty safe to assume that my mother had bed sores. But because the home didn’t have records to show that she had bed sores (she was bed ridden for nearly 2 years!) she was marked as low priority.

    How can I prepare for the next stage?

    I really would be grateful for any help and advice to get me through what I hope is the last stage. If it is the refusal I’m expecting I will take it to appeal. Do I have grounds to take it to the Ombudsman anyway or would it be best to await the outcome?

  26. Elisabeth 2 years ago

    My mother passed away last week, in the final stages of Alzheimer’s, but we were awaiting the outcome of her CHC assessment which took place in September 2016. We were told the payment would be backdated to September if the assessment was approved. My sister and I are both executors of her will and are keen to pursue this. We feel as if they were hoping Mum would die in the meantime so that they wouldn’t have to pay out. Do we now pursue this as a claim for retrospective CHC?

    • Angela Sherman 2 years ago

      Elisabeth – I’m so sad to hear about your mother. You should still receive a decision from the September ’16 CHC assessment. The CHC assessors should have made a recommendation there and then, which should then have been sent to the CCG for the actual funding decision. Any payment should be backdated to day 29 after the original Checklist assessment. You should not have to start a new retrospective claim – the current one (Sep ’16) still needs to be completed properly. This may also help: http://caretobedifferent.co.uk/wits-end-nhs-continuing-healthcare/

      • Kim 1 year ago

        We have just had an Independent Review Panel meeting for assessment period Dec 2015 – May 2016 (yes it has taken this long!) and I feel we will be told my mother in law was not eligible. They have confirmed our case is one of the worst processes (or total lack of following National Framework process) they have seen. They asked whether we had a review after May 2016 as they knew my mother in law’ s situation deteriorated and more health problems occurred. We said no. They said we had one year from the date of the local resolution panel decision (29 March 2017) to request this. Can you advise how we could request this Continuing Healthcare review, especially as we have no GP/Social Worker as my mother in law has passed away. And what is the official name/description for this?

    • D Jolly 1 year ago

      Elizabeth I have only just read your comments. I am executer of my mothers estate she died of Dementia etc in 2010, and I am still pursuing my retrospective claim. We have had a partial win just under half, but now for the next round next week. Reading your post and considering my own circumstances I have just realised the NHS has turned me into a Lay Accountant. I just look at the Decision Support Tool now after 6 or more years, realise that I have lost my caring side of my nature and act like some robot. I will carry on for my deceased parents sake and principles but will never forgive or forget the politicians who have made this happen. Don’t let the b s grind you down!

  27. MEL 2 years ago

    I filed a claim for retrospective CHC in respect of my late father in 2012 on behalf of my mother for whom I had a Power of Attorney. After 3 and a half years my father was deemed to have been eligible retrospectively for partial CHC. In the further 8 months, during which time I had to provide evidence of his care home costs my mother sadly also passed away. I have just received a letter confirming the payment due to my mother. I am the executor of my mother’s estate – can the payment which was due to be paid to my mother (for my father’s CHC costs) be paid into my mother’s estate?

    • Angela Sherman 2 years ago

      Mel – for tax reasons, the payment may need to be paid into your father’s estate, not your mother’s – but I’d strongly recommend checking this with a solicitor.

  28. kevin 2 years ago

    Where has all the money gone? update. It has taken ages to find out about what CCG’s call the Pooled Budget Fund and the National Risk Pool which has donated £444 million over 3 years to NHS England. CCG’s call it the Pooled Budget Fund and the National Risk Pool with regard to the Retrospective Review of Continuing Health Care but NHS England call it the NHS Continuing Healthcare Risk Pool with regard to Previously Unassessed Periods of Care (PUPoC). The CCG’s can apply to have money from this fund to pay for RRoCHC but NHS England have said they dont keep records of these transactions? Is it any wonder that confusion reigns about RRoCHC aka PUPoC when the groups involved do not speak the same language. It appears that most money is going on administration rather than giving it to worthy claimants,no surprise there. I asked NHS England if they would publish results for all CCG’s with regard to RRoCHC aka PUPoC…they said they have no plans to do that.

  29. joanne 2 years ago

    We managed to get CHC for my father but we had been paying for his care home fees for the past two years before we were found eligible. I asked our social worker about redress and was told that she didn’t know what I was talking about. Long story short, I managed to get to appeal in front of a panel who were supposed to be independent. They handed me a huge report which I was supposed to have had before the meeting but someone had forgotten to do this. I was then given the choice of a new meeting in a couple of months or two hours to read it and then have the meeting. I did the latter and during the meeting they went against everything I said. I think I have received the decision support tool as well as the documents from those who had input but I do not know how these people are independent as they work for the ccg, I don’t know their titles or what recommendation was given before we got to panel. To say that the process is a mess is an understatement and the way that families are treated is disgusting. I am going to appeal but doubt we will get anywhere with it. Feeling very deflated.

  30. kevin 2 years ago

    Dissatisfaction appeal…6 months and still waiting. The Commissioning Group performing this task are not part of the Clinical Commissioning Group and have stopped answering my info requests for several months. For some unknown reason my mother’s CCG chose not to have their own Comm. Group but opted to use one of NHS England’s “recommended” Comm. Groups as seen on their website. My research into comparing results of different CCGs with regard to Retrospective Review of Continuing Heath Care has shown that “in-house” Comm. Groups have a higher successful claim rate and higher pay out rate than those like my mother’s who went for a remote Comm.Group. Also the inhouse groups have a lower cost of performing those reviews than those who went for the remote Comm.Group option. I will admit that I have only sampled 6 CCG’s close to my mother’s geographically but it does pose another question about getting a FAIR and FULL assessment of our claims from a system so diverse in its application nationwide. The Government stated that all reviews should be completed by March 2017, back in 2012 that seemed like a very generous time frame, today it seems more like the under estimation of all time.

  31. Sue Hardy 2 years ago

    Hello Myra, it seems you have a lot of issues going on which you need to break down in to separate parts to fight.
    1) The return of the money from the company that took your £1400 to fight your father’s case.
    2) Your father’s records that you require from the care home.
    3) The treatment that your father received whilst in the care home.
    I am not in the legal profession. But I have had many years fighting for the return of care home fees, like others on this website. I have vast experience in the process and can also pack a punch when it matters. I shall write again shortly on my ideas on each area, if you would like my help? Kind regards, Sue

    • myra comer 2 years ago

      Hi Sue, Can you help me please with the whole mess of my dads care notes. I am at boiling point and ready to snap. I have been suffering mental health problems that have emanated from what has happened to my dad in the home. Every body of authority I have either spoken to or send messages to and they all come back with the usual comment ” we cant force the home to release your late fathers records. Now he had died it is even worse”. Apparently I have no rights to my dads notes even when he was alive. The home did not release them because they were “protecting my dad”. How I wished they had protected him from their awful and cruel ways. The only answers I got were, NO NO NO.. So I would be more than grateful if you would help me with all this. It is making me ill, and authorities that are there to do this say they cannot. do anything……..so why are they there.? I was informed I could take them to court…..how much would this cost ? And would it work? The …….. [CHC advice company]……. have not returned my calls on several occasions, last call Thursday last, also yesterday….nothing. In the hope that you may be able to assist makes me feel that somebody can help me sort this out. Thank you. Kind Regards, Myra

  32. Myra 2 years ago

    Hi, I am asking for some advice regarding my late father. He died on 2nd April 2016 in hospital . Prior to this some 10 months earlier I had read about the chance of dad getting his fees paid by NHS, so I employed a company who dealt with this situation all the time. I explained everything to them and they were certain dad should have been having his fees paid by NHS. I paid the company £1400 to begin with the search and also to ask for dad’s care plan notes from the home. Several times they denied release of the notes. Stating ‘I don’t have to’. This has gone on now maybe over 12 months. Data Protection were informed about this and failed to take any action as they think the care home did not understand this.

    Under any circumstances would they release the notes. Now my father has passed we are finding it much more difficult to deal with the propieters of the home. Ignoring letters from the company acting for me, telephone calls , emails. They have now said that I do not have a Power of Attorney and that’s that no notes. The company acting for me, after I had phoned them told me they were going to give it one more chance to request that CCG would give permission for us to get the files. Should this attempt fail then they have no other alternative than to disreguard the whole case.

    I emailed company telling them I would like my money refunding as they had not completed the task they had promised therefore, I wanted a refund. As yet I am still waiting to hear from them. I have informed the Care Home Ombudsman and did everything on line. By everything, I mean all my complaints to Care Home and reporting them to the newspaper about their ideals on caring for the residents. I had sent the home a letter regarding the food situation or lack of it. One carer told me on this occasion that there was no food for the residents supper. No, not a drastic thing, but when the food given to the residents for their lunch and tea was at times disgusting then their supper was very important in so much as they did not go to bed hungry. Cupboard empty, fridge empty (apart from a piece of rolled pork 6’long by 2′ high ) this was for the Sunday dinner for 14 people. Back to story,this is the reason why my fathers notes were not being released, my punishment. Formal complaint to Care Home sent by email one week ago requesting dads notes and my complaints about the food. Not sure if the Ombudsman will take my case really and another month down the line it is dubious if they will. I can only hope. I have read that I can go to the doctors and ask if I can get copies of dads files and use them. Would this be acceptable to get the ball rolling to start the request for dads case? I am sorry that I have gone round the houses to explain problem but don’t know what else I can do. I would be most grateful for any advice. Just one last thing, when dad was being discharged a meeting was held with family, nurses doctors etc and a Social Worker, who informed me that ‘if you think I am going to lose my job over you when you can’t care for your dad at home you are very sadly mistaken…..he needs 24 hour care. Nothing in writing just witnesses who were there at the meeting. Thank you whoever you are for taking the time and patience to read my story, keeping trying to get this sorted is all I can think about. Kind Regards, Myra Comer.

    • Angela Sherman 2 years ago

      Myra – if you have legal authority to act on behalf of your late father’s estate (e.g. as executor) then you should be able to access the necessary records. The behaviour and attitudes of many people involved here sounds shocking. There is a code of practice that all nursing staff have to follow and there’s a similar one for social care staff too. These codes may give you further clout in any action that you may take.

    • Angela Sherman 2 years ago
  33. Andrea White 3 years ago

    Kevin you are doing a fantastic job in extremely upsetting and frustrating circumstances. More power to your elbow. I have drafted letters to be sent once I have the answer to the Review of my Notice of Dissatisfaction and once our new MP has got her feet under the table. I was lucky in as much as I had Enduring Power of Attorney in place as I looked after Mum and her affairs for many years as the dementia took hold. Our local authority told us about the ‘deferred payment of fees’, but I thought that it would be better to sell Mum’s bungalow to keep everything simple. What the Council didn’t tell us was that the fees would go up drastically once Mum was self funding! When I asked to see the Manager to point out that they had made a mistake with Mum’s bill, he said, “Oh no, it’s right. We have a special deal with the local authority whereby they get special rates.” I would therefore advise anyone in a similar position to keep and rent out the property thereby reducing the amount of fees payable and providing additional income in the long term. It does beg the question though Kevin, why did the Court of Protection force the issue when it wasn’t necessary. Something that they should have known.
    As always good luck with your ongoing fight. And good luck to everyone on here with the hope of a positive outcome for every single one.

  34. kevin 3 years ago

    NHS Continuing HealthCare Refreshed Redress Guidance.. This document might interest those of you who had to sell a property to pay care home fees like myself. It states on page 10 under Deferred Payment Agreement that since Oct.2001 people who are paying all or part of their Care Home Fees may be able to AVOID selling their property to pay those fees by entering into a Deferred Payment Agreement with their Local Authority?..it then goes on to state that if this Deferred Payment offer was omitted in a particular case then the CCG should ENSURE that the individual is directed to the Local Authority. I was forced by the Court of Protection back in 2006 to clear my mother’s property and sell it to pay for the Care Home Fees. Did any NHS group contact me to explain what my mother may be entitled to?….NO. Although I realise this may only affect a small number
    of people who had to sell in order to pay care home fees it highlights yet again that the NHS has provided
    guidelines and instructions for CCG’s and other groups involved in Continuing Health Care but they are not
    being followed. I now will use this lack of knowledge and implementation of NHS Guidelines as another
    reason why my mother’s CCG have failed to provide the correct healthcare to suit my mother’s needs.
    I have sent this info to the complaints dept. and they are looking into it, I seem to have heard that phrase
    many times before….

  35. mary 3 years ago

    I have today had my claim rejected once again by the CQC they say that I can appeal to NHS England, has anyone had any success following this route?

  36. kevin 3 years ago

    Update on my use of FOI Act (Freedom of Information Act). I have been informed that I am barred from submitting any requests for information to my mother’s CCG for 2 months because I have asked too many questions on the subject of Retrospective Review of Continuing Health Care? This applies to FOI as well as general enquiries so I cannot ask about my dissatisfaction appeal, cannot ask about the Pooled Budget Fund, cannot even appeal this decision by the Chief Finance Officer of this CCG. I have 2 complaints about the “performance” of my mother’s CCG ongoing but will only hear about these if and when they decide to inform me. The number of submissions I have sent is 15 which over 4 months is hardly a back breaking task for the FOI team.

    • Sue Hardy 3 years ago

      Kevin, I had to laugh when I read your last message. I know it is not a laughing matter but you having used up your quota of FOI requests is hilarious. They must have your name in big letters at the FOI offices. If you need someone else to put the request in I am happy to do so if you could supply your exact wording etc. we must be like terriers in this matter and dig and dig until we have the truth. Great work Kevin.

      • kevin 3 years ago

        Sue,thanks for your offer but I have decided to continue collecting
        mistakes and errors made by my mother’s CCG by writing to other
        Board members and also using the Complaints Dept. If these people
        also ignore my questions for 2 months then it is only going to look
        worse for them as I follow guidelines for complaints and appeals.
        I have contacted the ICO (Information Commissioner’s Office) who
        will look into being barred for 2 months by this Board Member and
        I really would like to know what is the right amount of questions
        to ask while I try to claim £128,000+ in Care Home Fees and also
        get compensation for the mis-selling of my mother’s property to
        pay for those fees? I am now using a tactic of asking my mother’s
        CCG a question about Retrospective Review of Continuing Health
        Care that I know the answer to because I have found the answer
        amongst the wilderness of NHS documents and seeing how long
        it takes to get an answer,let alone the right answer from the CCG.
        What started out as a claim to see if Care Home Fees would be
        repayed back in Sept.2012 has now snow balled into trying to
        find out where has all the money gone that 211 CCG’s have
        access to,procedure mistakes,withholding information,delay
        tactics and the general stonewalling attitude of groups involved
        in Retrospective Review of Continuing Health Care.
        One last thought is that the groups involved in Retro Review
        are the same ones who do the current claims for Continuing
        Heath Care paid for by the NHS and that is depressing to say
        the least…..the fight continues.

      • Andrea White 3 years ago

        Hi Sue I can’t find your reply to my post, so am replying to this one instead. The mind boggles at a ‘new system’. Would it be too much to expect a ‘new IMPROVED system?’ More job creation schemes for the fat cats who seem to be the only people making money out of the ‘system’. Still not received an answer to my ‘Notice of Dissatisfaction’ notice sent on 27 May. And as an aside, a solicitor doesn’t seem to make any difference to the speed, or lack of speed, of response. I am growing old in the waiting.

  37. Jane Mulholland 3 years ago

    Can anyone help/advise me please? My mother was awarded CHC in October 2014 and has just had a review. The nurse has said, her recommendation to the panel, will be to withdraw the funding, even though mum’s ‘score’ indicated a higher level of needs now. If we appeal, do we continue to get the funding until the final decision is made, and if it goes against us, do we have to repay any funds paid during the appeal process?

  38. Mel 3 years ago

    OK I have just had a reply from the CCG re who the Panel are and with regards requesting the documents the Nurse Assessor and Panel saw when making the decision.

    I was quoted back that the LA are not involved with the retrospective process, as I quoted above. Can anyone confirm that Social Services should have been involved with the retrospective process and any laws I can quote please?

    With regards being allowed to see what documents were used to come to the decision; I have been told they do not have the authority to show these to me. I could try to request them from the bodies involved but they may not agree to sharing these documents with me. I was not told which bodies were involved, but I think I can safely assume Social Services were not and that my evidence wasn’t.

    If anyone can point me towards the law and what they are supposed to do on these points I would be grateful.

  39. Mel 3 years ago

    Hi C
    I have thankfully not been emotional in all of the correspondence and my input was sent via Recorded Delivery. Whilst I am not daft and have tried to gather as much evidence as possible, there are still a few questions I have to ask of people, for example the review stated that only the CCG was involved in the Retrospective review process and not the LA, but the CCG website states

    “A recommendation will be made to a multi- disciplinary team (MDT) of professionals within the CCG who will consider whether the nature, complexity, intensity or unpredictability of the individual’s needs indicate a ‘primary health need”.

    Now, I thought a MDT was supposed to include a Social Care Worker, but in this instance it wasn’t. Maybe this is correct, I don’t know.

    Also, although the Panel’s summary mentions the Coughlan and Grogan judgements, it states that Mum had “steady and predictable decline in her overall condition and is not considered to be a level or degree to deem her eligible for NHS Fully Funded Care.” It’s all based on a lack of clinical evidence.

    The fact my Mum was in a wheel chair which she could not mobilise herself, couldn’t really communicate, certainly couldn’t make and decisions herself, had no idea if she required anything and no idea if she was in danger, along with documented evidence of physical and verbal aggeression since 2005, I believe she was in a worse condition than Coughlan and thus would require Fully Funded Nursing Care. Plus her needs were not just Social obviously.

    But it’s how I approach this that is the issue.

  40. Mel 3 years ago

    Today I received an outcome of the Retrospective Review for my late mother. The period was for some 28 months of care from June 2012 to March 2014. They awarded my mother 7 months. The Review mentioned nothing of my detailed input I had sent, so I don’t know if the Nurse Reviewer ever saw this. The Review states she required assistance with decision making during the period they have refused funding for. I have found further evidence to prove she couldn’t make decision for herself from around 2005, due to Vascular Dementia.
    The period they have awarded her CHC for, is just after a diary was kept of Mum’s behaviour because she had failed the CHC around 9 months earlier, but just before it was noted mum seriously hurt the chiropodist – I gather covering their backs in case of being sued!
    I am on sickness benefits and cannot afford a solicitor, so will have to appeal this decision myself. If anyone can offer advice in preparing the appeal, I would be extremely grateful, as I know this is very wrong. My mother had serious behavioral needs from 2005, which only increased when she went into the care home in 2012.

    • C 3 years ago

      Hi, you don’t need a solicitor. Just keep good records and do everything in writing (be professional too, try not to let emotions get in your responses but do include the emotional stress on your loved one). Send everything in writing by recorded delivery so they cannot deny receiving anything. I’m fighting and fighting the CCG without a solicitor – submitted letter after letter and four years they denied part of the claim so I’m at dispute stage. I’ve been very clear in my letters that I know what’s what – quote case law, the rules, the framework, etc. And that I will fight them even if I need to go to an Independent Review Panel where I will share all of the CCG’s failings in public. Good luck – I’m fighting them too!

    • Angela Sherman 3 years ago

      Mel – this may help: http://caretobedifferent.co.uk/appealing-a-continuing-care-funding-decision/ Many of the points are relevant to retrospective appeals as well as current appeals. If the review panel have failed to look at all the evidence, they must do it again.

  41. andrea White 3 years ago

    Hi Kevin
    I completed my claim for Retrospective Review independently, but engaged a solicitor to complete and submit the Expression of Dissatisfaction following their refusal to fund my Mum’s care fees. They only acknowledged receipt after 2 emails asking for acknowledgement 14 days later. I was told that reviews of Dissatisfaction take between 10 and 12 weeks. It was submitted on 27 May!! and guess what? I’m still waiting. I emailed and phoned countless times – at least 9 phone calls – all of which were to an answerphone. My solicitor also contacted them, but to no avail. Eventually at the end of September someone from Customer Relations rang and apologised for not getting back to me, but the review process is taking a little bit longer than they had anticipated and that it would be Customer Relations that would be carrying out the review. Why, why why? I know what the outcome is going to be and I want to take it through to the appeal stage as soon as possible. It may actually be resolved by the time I’m 75! That was the long answer to your query Kevin – the short answer is – no, it doesn’t make the slightest difference whether its done by a solicitor or personally.

    I’d also like to thank you for all your hard work going through the FOI process – your findings make the whole farce of a process look like the job creation scheme that it is. How dare they!

  42. kevin 3 years ago

    Could anyone using a solicitor to present their claim for Retrospective
    Review of Continuing Healthcare tell me if the CCG involved are giving
    answers promptly?..are they co-operative in providing information?
    As I am claiming for my late mother myself I have reached the stage
    where every question I ask the CCG is “inhand ” with some group and
    an answer is not always forthcoming so I have to remind them of the
    job they should be doing providing accurate answers.
    It will be very interesting to see the success rate of claims submitted
    by solicitors compared to DIY claimants like myself when taken
    across the whole of England.

    • Sue Hardy 3 years ago

      Kevin, I wondered that myself. We are making our own claim and I have a feeling I am pushed to the back of the queue each time I call or email. Solicitors have more clout than general public. I have resorted to copying in the National Audit Office and CCG complaints department into my emails just to receive a reply from the Commissioning Support Unit.

  43. mary lavelle 3 years ago

    I too visited my mum three times a week over a five year period. The carer’s were lovely and did their best, mostly were from overseas and their spoken English was very good but their ability to convey care notes to write their reports was inadequate, not their fault, but sadly not helpful when trying to make a retrospective claim. The home my mum was in has since closed. I’ve not heard from CQC since my meeting four weeks ago! Thank you Kevin for your research.

  44. peter. 3 years ago

    Well Done Kevin, Keep up the good work, It’s high time someone took the bull by the horns. Years of comment has not done one iota of good! These “Boards” which make the final judgment as to reimburse people or not choose to ignore the professionals and rely on the hard working care workers [bless them one and all] who are not trained to professional standards, and certainly don’t have time observe patient’s in total] to assess the so called criteria on which to pass judgment, which in my case was used. I visited the home on a regular basis roughly 3 times a week, and the comments certainly did not match my observations with regard to my wife’s stay.

  45. kevin 3 years ago

    Where has the money gone? Using a Freedom of Information (FOI) request I have been told that £444 million has been put into the Pooled Budget Fund with respect to Retro Review of Continuing Healthcare (CHC) from 2014 to 2017. This was the contributions from 211 CCG’s in England…so where has this money gone? My mother’s CCG who put in £4,830,000 were asked for an explanation as to where this was used in Retrospective Reviews of CHC and even using FOI they are very reluctant to explain its use. I also asked another local CCG about Pooled Budget Fund and they also were sheepish about an explanation, so a FOI request was submitted and I await their answer. I have asked the group in control of the 211 CCG’s, NHS England, to explain where this money has gone and I also wait for their answer. So far I have 115 Emails regarding my claim since submitting the dissatisfaction appeal and there’s going to be many more as I prepare for the Independent Review Panel (IRP) and the Ombudsman.

    • Sue Hardy 3 years ago

      Kevin, there must be a paper trail. Every government department has to produce Year End and Quarter end statutory accounts. These are available for public review. The only issue we will have is how do we “unpick” the specific funding and outgoings of this department. From my experience of working in government accounting (not NHS), each department produces their own accounts (monthly, quarterly, annually) Consolidated into the final NHS accounts. It will be a hard task to obtain the exact departments records. I would love to dig down with you on this one, but there’s no point in me duplicating your work so far. Let me know if I can help.

  46. mary 3 years ago

    My mum went into a care home in 2010 having been sectioned with vascular dementia. She passed away in 2015. I applied for retrospective care for this period but was turned down. Then I applied for the last four months of her life and was turned down. Today I’ve been to an interview and can go to NHS England and apply for the last two months of her life! In the five year period of her care all her savings and her home have been lost. Is this the way families are rewarded for a life time of working and paying into the system? It seems dementia is not really considered along with physical disability. Its no wonder people would rather live on benefits, they’ve nothing to lose.

  47. Lynn 3 years ago

    I wholeheartedly agree with Michael’s comments above about the recouping of monies paid out by the families over the years – and we were lead to believe back in 2012 (I remember seeing a piece on GMTV at the time that the monies paid out by families could be claimed back by going through this CHC Retrospective Funding review – how wrong they were!) It is an extremely complicated, long-winded process and you have to jump through so many hoops, the goalposts keep getting moved and then you have the rug pulled out from under your feet by being told that the care homes have destroyed all records.

    I am, against my better judgement, going to apply to have my claim reviewed by the IRP now, as I feel I would be letting my father down if I didn’t at least have one last try – even though I do not have any further evidence. I expect it will be another 6-12 months of waiting and wondering etc and at the end more disappointment. I can’t be the only one who feels thoroughly deflated with this whole thing. After all, if the CCG have so much money allocated to them to pay out to families, then what on earth are they doing with all the left over money that has NOT been paid?

    • Angela Sherman 3 years ago

      Lynn – regarding care records, you may find the link in my response to angela helpful.

  48. angela 3 years ago

    Utterly disappointed to now be told the GP records they have are not sufficient, they have no access to care home records as they are no longer available. If I am unhappy they are asking me to write to appeals lead nurse….I will be doing so asap. This is so wrong, after 4 years of waiting.

  49. Andrea White 3 years ago

    Kevin – the statistics you are finding out through FOI are staggering. I can’t help thinking that this whole travesty of a non-system should be brought to the attention of the media – ITV’s Tonight springs to mind, but I’m sure there are others. What about Which as a consumer organisation? How about all of us disgruntled applicants contact our MPs en mass? Update on my situation – First application October 2012; decision to refuse Sept 2015; informed of decision April 2016; Notification of Dissatisfaction lodged 27 May 2016; after chasing for acknowledgement of receipt I was told a decision would be made within 10-12 weeks; started phoning (they only take answerphone messages and then allegedly get back to the caller) 1 September; 10 messages left and 3 emails sent; Return phone call to inform me that the review is being carried out by the PR department(!!!!! of course they are experts) and that they will definitely ring me by Wednesday next week. I know the answer will be that they will uphold the original decision, despite me hiring a solicitor to sort it on my behalf, but I want to get on with the appeal. I have advised my daughter to start applying for care home fees for me now so they might actually have made a decision by the time I need it.
    It’s bad enough for us whose relatives have died – what must it be like for people applying for fees to cover care costs of the living. It is all a living nightmare.

    • kevin 3 years ago

      You are right,the media should know about this fiasco and I plan to contact
      the local press where my mother lived and offer them all the information
      I have gathered since Sept.2012 once they have concluded the review for
      this CCG.With regard to FOI,if just one person from each CCG and there
      are 211 in England asked the same questions I did then we would have
      a good idea of what is going on nationwide,my latest info has revealed
      that a neighbouring CCG has a 11% successful claim rate whereas my
      mother’s CCG so far has a successful claim rate of 1.6%??? I thought
      11% was low,1.6% is obscene in my view and I am writing to the
      head of my mother’s CCG asking for an explanation.I can see the
      repercussions of this Retro Review going on for years.

  50. kevin 3 years ago

    Retrospective review and the Pooled Budget Fund…
    Using Freedom of Information (FOI) another unbelievable set of financial stats from a CCG nextdoor to my mother’s CCG. Every CCG has contributed to a Pooled Budget Fund; there are 211 CCG’s in England and this CCG paid £4,380,000 into this fund!!! They had 322 claims, 35 successful, paid £459,000 to those claims and paid an in-house Comm Group about £300,000 to do this review.This Pooled Budget Fund is another can of worms to be opened.I have asked NHS England about this fund and they are not very willing, so again I have put in a FOI request for more info…I will be back with more…

  51. a hutchinson 3 years ago

    I sent a complaint letter in [to the NHS] and surprise surprise they have replied saying they have found some GP records??? What they don’t have is care home records which are vital to the claim so I feel I am flogging a dead horse.

  52. Andrea White 3 years ago

    Thank you for your comments Angela. At the moment I would just be grateful for someone from the NHS to get back to me to let me know what is happening with my notice of dissatisfaction. I have now phoned them 6 times and sent 2 emails to them.

  53. Angela Sherman 3 years ago

    Many cases involved CCGs declining funding because of a lack of care records. That is, however, flawed. The CCG must use actual evidence to show that a person wasn’t eligible, and if care records have been destroyed or are inadequate, a CCG has no basis on which to decide that a person was ineligible. Similarly, a local authority must take a view (by referring to care records) as to whether the person in care was within or beyond the local authority’s legal remit for care. If the ‘system’ has failed to keep records, to is not the fault of the person who required the care. That’s easy to say, of course. The first thing to do is to ask the CCG for specific their specific written rationale that shows why a person was found not eligible – and a lack of care notes is not a rationale. Families may need a solicitor’s letter to challenge this if the CCG is being obstructive. The situation is far from ideal, to say the very least. It is indeed disgraceful.

  54. KATHLEEN LEE 3 years ago

    Andrea’s case appears to be almost identical to my claim, I have lodged a notice of dissatisfaction and have actually had an acknowledgement that it has been received . I submitted my mothers death certificate which stated one of the causes of death was food refusal, but again, because the care records have been destroyed there is no other written evidence.How do we go ahead if the basis of our claims are being assessed on the fact of NO EVIDENCE because of lack of care notes ? So many claims are being disregarded because of lack of evidence it is a disgrace!

  55. Michael 3 years ago

    A member of my family is claiming at the moment through a claim firm and it’s been turned down for the most of the period with them just allowing the last few months of the patients life. There seem to be so many cases on here with similar gripes and i can’t really gauge whether the final outcomes are positive or not. What does seem evident is that there are a lot of delay tactics and unfair criteria used. I seriously think that this should be brought to the attention of the national press to try and expose the deceit and cheating that is going on as it is scandalous. In all of these cases we are trying to recoup money unfairly taken from us by the government which was used to care for our loved ones which, according to them, should be repaid – if only it was that easy!

  56. kevin 3 years ago

    Just to highlight what I am up against with “my” CCG…. I was asked in 2013 the period of time I was claiming to have carehome fees repaid,I said 10/02/2005 up to 01/06/2009.The CCG Comm.Group took this as the dates to consider medical evidence for!!!!They selected these dates and compiled their Needs Portrayal Document (NPD) and DST using that info, unbelievable stupidity.They completely missed my mother’s psychiatric home assessment,GP records and my mother being sectioned in her own home.I now have
    to find out if my appeal will use “their” dates.This would make a great sitcom for TV but I dont find it funny.

  57. Andrea White 3 years ago

    There are so many people here telling the same story of incompetence, negligence and farcical decisions based on shoddy assessments. Kevin’s figures are a national disgrace and proves that this whole process is a ‘job creation scheme’ with no measurable outputs. Who are these people answerable to? The hierarchy is laughable. My story is so similar to everyone else’s. A claim for retrospective funding made in 2012; a decision made in September 2015 that they finally informed me of in February 2016; the decision was obviously a refusal through lack of records; A notice of dissatisfaction lodged 27 May, no acknowledgement of receipt, but after emails and phone calls I was told that the review decision usually takes between 10 and 12 weeks. I have now emailed once and phoned 3 times asking for an update and no-one has bothered to get back to me. It occurs to me that this is purely a tick box exercise with no common sense or standardisation of procedure through the different authorities. They didn’t use a ‘probability’ assessment, i.e. records in 2006 showed my mother to be losing weight and her nutrition had to be monitored – as part of my evidence I submitted a photo of her at 4.5 stone in 2009, but that ‘tick box’ showed low priority because of lack of records! Similarly, records showed that she was doubly incontinent in 2006, but I can only assume that the low priority tick in subsequent years was because she miraculously became continent – though no records exist to prove this. Final example (though there are loads more examples) is that GP records show regular prescriptions for dressings used to treat bed sores. But guess what? No care home records to show that she had bed sores, so again, low priority. Where do I go next to find out what happened in the review? I know it will uphold the original decision and I want to start proceding to the appeal stage.

    • Angela Sherman 3 years ago

      Andrea – the next stage is an Independent Review Panel hearing with NHS England, but before that you may need to have what’s called a Local Dispute Resolution Meeting with the local CCG.

  58. kevin 3 years ago

    Does anybody know which NHS dept. controls CCG’s with regard to Retro Reviews? I have asked the CCG I am claiming
    from but they are reluctant to say who gives them orders or instructions and what those orders or instructions were.
    I have resorted to using FOI act to find out but it makes me wonder what are CCG’s trying to hide.

    • Angela Sherman 3 years ago

      Kevin – it’s NHS England.

  59. Lynn 3 years ago

    In reply to Kevin’s comment above, I can’t believe only 10 claims have been successful so far…. well, actually I can!

    It just goes to show doesn’t it – that’s why the majority of cases have been turned down!!!

  60. Lynn 3 years ago

    My father died in 2008 and I think the care home may have kept the records for 3 years. I didn’t start my claim until 2012 and of course I wasn’t to know then that care home records played a massive part in this process. I get the impression that the appeal panel felt that my father’s needs were adequately cared for by the care home and he didn’t need any extra special medical care or was being fed by a tube etc, so that’s probably why they have come to this decision. I don’t think another Appeal would bring about a different decision, as I have no extra evidence to give them. Luckily the GP records were quite extensive, but obviously the panel felt that all that was needed to be done was done, as there was nothing “special” about this case.

    I will just have to live with the decision and say “C’est la vie”. I will get over it I’m sure.

    • kevin 3 years ago

      Some info about medical records,I had to buy from the care home copies of all records for £150,they also said that they did
      not give the NHS copies which puzzled me but I could buy them because I had worked for the Court of Protection as a
      deputy in charge of my mother’s financial and property affairs.I also purchased my mother’s GP records for a bargain £20
      along with psychiatric reports.All in all I had more than 80 pages of medical records which I copied and sent to the CCG doing
      my retrospective review claim.They acknowledged receiving them so I sat back and waited a few years for my claim to be
      examined.After 4 years of waiting I got an answer regarding my claim only to find they did not use all the records in assessing
      my claim!!!! so not surprisingly my claim failed.I am currently appealing their decision but with the same group doing this
      appeal as did the original claim this is turning into a farce.You would think that the NHS,Carehomes,CCG assessment groups
      would be compelled to all follow the same guidelines regarding medical records,sorry that was such a stupid suggestion,
      too obvious..it could never work in a computor age.

      • Angela Sherman 3 years ago

        That’s appalling, Kevin – and to be asked to pay that amount for the care records is outrageous.

    • Angela Sherman 3 years ago

      Lynn – if the funding decision was based on whether your father’s needs were being managed OK, then the decision is flawed. Managed needs are still needs, and they should be assessed as if no care were in place. To be eligible for Continuing Healthcare funding does not require a person to have specialist care or be tube fed or anything like that. Also, if there were no adequate care records, this does not mean that the NHS can simply deny retrospective funding on that basis; they must be able to show clearly that he wasn’t eligible – and why (if indeed he wasn’t eligible). If they can’t clearly show that, then they can’t say he wasn’t eligible. They will try, of course. It may be worth going back to them with these points. His case did not need to be ‘special’ in the sense of unusual or specialist care.

  61. kevin 3 years ago

    Using the Freedom of Information (FOI) act I have got the following information from the CCG examining my retrospective claim to repay care home fees…..1. 747 claims submitted.
    2. 600+ claims sorted so far.
    3.Up to 10 successful claims so far!!!!!!
    4. A total of £10k to £20k paid out in total to those claims!!!!!!
    5. The NHS group reviewing these claims are paid,wait for it….
    £382,541 annually….unbelievable…
    perhaps you might like to ask your CCG where the money is going…

  62. Lynn 3 years ago

    I have just had the outcome of an appeal with a Local Review Panel after my initial claim was rejected and unfortunately the decision still stands that my father was not eligible for Continuing Healthcare. The care home records were destroyed about 3 years after he passed away, so there was only the GP records to go on and I had no extra evidence to provide them. I feel that the last 4 years of waiting and wondering have been a complete waste of time and I only wish that the CCG had told me at the beginning of my claim 4 years ago, that if there are no care home records to look at, you don’t stand a cat in hell’s chance of getting anywhere and I would never have even bothered trying to claim as the whole process has left me feeling totally exasperated and let down.

    Good luck to anyone else who successfully makes a claim – you are in the minority and should feel very pleased with yourselves if you do actually get a successful outcome, as it seems these are few and far between!

    • Angela Sherman 3 years ago

      Lynn – that’s massively frustrating. A lack of care notes does not automatically equate to a decision of ineligibility – no matter what the CCG may say. There may be a case for incompetence by the care home, and perhaps by the NHS for failing to properly research care needs via (for example) the GP and other sources.

  63. a hutchinson 3 years ago

    I started the claim in 2012, my father sadly passed away in 2007 but I was requesting care home fees be returned as my father needed care all the time. Four years its taken to get a decision, only to be told there is no longer any gp or nursing home records available? how can make a decision then that should be based on those records? Surely it is not my fault this process has taken so long. they have told me I cannot appeal but I can complain? help!

    • Angela Sherman 3 years ago

      They are wrong to tell you you cannot appeal. See the response to Kathleen’s comment above.

  64. kathleen lee 3 years ago

    i have had the claim for my mother’s retrospective care home fees rejected, due mainly to non provision of care home notes. I have appealed against the decision and have now been sent another form to fill in. I feel I am fighting a losing battle due to other people’s negligence in failing to provide the care notes which I have discovered where destroyed. When I first submitted the retrospective claim the notes would probably still have been available but the process has taken 4 yrs. Do you think I still have a case with only the evidence I can provide?

    • Angela Sherman 3 years ago

      Kathleen – you’re not alone in how you feel about the process. A lack of notes doesn’t mean your mother’s case can simply be thrown out. To deny funding the NHS must be able to clearly show that she wasn’t eligible. I can’t say whether or not you should actually have the funding without looking in depth at your case, but negligence and incompetence on the part of the various authorities are not your fault, and so I would argue that point strongly.

  65. Diane Brown 3 years ago

    Thank you, I will let you know how I get on.

  66. Diane Brown 3 years ago

    Mum received NHS Continuing Care for 3 years from 2013 until she died this year. 3 years ago we applied for retrospective CC from October 2009 (when she first went into care ) and our case has just been turned down for the following reasons:
    “X’s case was considered at a Retrospective Review Service Multi-­Disciplinary Panel when their eligibility for NHS continuing healthcare period 17/11/2011 to 19/05/2013 was assessed and the decision has been ratified. Please be advised that an assessment was carried out 16/11/2011, therefore the enquiry period prior to this is considered as an assessed period of care and cannot be reassessed under the ‘NHS Continuing Healthcare’ dealing with requests for assessments of previously unassessed periods of care policy (October 2012). The Retrospective Review Panel concluded that they were not eligible for NHS continuing healthcare with respect to the National Framework (2012) for the period of enquiry.”
    The assessment they are referring to was carried out by a Social Worker from The Council regarding her placement at the home (not by a medical professional). Do we have grounds for appeal? Back to 2009?

    • Angela Sherman 3 years ago

      Diane – did you ever receive any paperwork for the supposed assessment in 2011, and were you involved? Depending on how far that assessment got (if indeed it was carried out), it may have been flawed because there was just one social worker involved. The first thing to do is to ask for copies of all paperwork and assessment notes relating to that assessment. Also, if no one ever told you about it at the time, it is flawed and does not stand as a proper assessment. For that reason alone the NHS’s claim that it is a period of care that has already been assessed is up for challenge. You can also challenge the outcome of the review of the more recent period of care if you disagree with the rationale for that decision.

      • Diane Brown 3 years ago

        Thank you for your help with this. No I don’t think we did receive any paperwork. My sister and I were there but only one social worker was involved. I had this further response: “The RRS is only commissioned by XXX Clinical Commissioning Group to undertake retrospective reviews of previously un-assessed periods of care. Assessed periods of care include that which was undertaken by XXX Council in 2011; therefore, NHS XXX Commissioning Support Unit’s RRS is unable to consider your mother’s case retrospectively.” Also can we ask for the review to go back to 2009?

        • Angela Sherman 3 years ago

          If they can’t produce the paperwork then they cannot claim an assessment was done. Also, they have failed to follow procedure by not involving you and taking your input and evidence into account. So you have two potential reasons to insist on a review back to your original date.

  67. Alistair Coy 3 years ago

    My dad’s claim for retrospective Continuing Healthcare has today been approved by the Panel. He went into care in June 2010 and died May 2013. I have just received a phone call to confirm that his CHC has been agreed to 31/03/2012 but surely, we should be able to claim a refund upto his death in 2013 on the basis that his health deteriorated dramatically from March 2012 to his death in 2013? I am awaiting the forms to process the necessary refund but would appreciate clarification as to what happens in a case like this. Thank you very much in anticipation of an early response.

    • Angela Sherman 3 years ago

      Normally a claim is reviewed based on the period of care stated on the actual claim. So, for example, a person might make a retrospective claim for care fees from 2010-2012. However, in your case, if you didn’t specify any ‘end’ date for the claim, and your father was still alive, it seems strange that March ’12 has been plucked from somewhere. If this is the case, I would write to the CHC people and complain about what has been done, and state that you are not prepared to have to wait all over again for the remaining refund.

  68. Diane Love 3 years ago

    Hi we are awaiting a decision to our appeal. If we are successfull who pays and how long is that likely to take. Thank you.

  69. kevin 3 years ago

    My claim has been rejected mainly because the Needs Portrayal Document (NPD) has limited the time period for assessment. My mother was sectioned under the Mental Health Act (MHA) sect.2 and removed from her home in front of my very eyes and taken to be assessed. They said she was too far gone, so off she went with no time given to pack clothes etc -gone. This is NOT covered in the NPD so limiting my chances of getting a fair review. They have assessed my mother only while she was in a care home pacified bya coctail of drugs making her more liable to be controlled. Surely a fair assessment would cover ALL medical information relevant to that illness? I am currently using the Freedom of Information Act to get detailed stats on how many applied, how many have succeeded with their claim, the qualifications of “nurses” who formed the panel which rejected my claim etc. Frustrating but not unexpected. Well done NHS.

  70. peter 3 years ago

    I have waited for about 8 years for a decision from the retrospect people who now have informed me the application has been turned down, as the reason given was totally erroneous. I have requested how and why the Panel arrived at this decision in writing, no less than 4 times, letters sent by me to be signed for over a three month period. No reply! It appears that the manager who is currently in charge of problems such as mine and countless others, is without purpose.

    Is it not possible that the people who are requesting action from these ignorant civil servants etc. could somehow sue them or their masters. I would be most interested in hearing from anyone who has an idea of how to turn the tables legally of course on the dictatorial individuals who are thumbing their noses at us all. If the boot was on the other foot we would have ended up in court long ago.

  71. Jean 3 years ago

    It had been five years since I started my claim and I have been told today it is going to panel. Please could somebody tell me what this means. thankyou

    • Angela Sherman 3 years ago

      Jean – it sounds as though the decision will be made about your claim – by a decision making panel. If you have not been given a copy of the report that is actually going to the panel, insist that this is done first. You should have the opportunity to comment on it first.

      • Jean 3 years ago

        I will do that thank you very much

  72. John 3 years ago

    Really helpful article. I am so happy, I have just come across your website. I am a bit confused in one area: Is there a definition provided by the government of “exceptional circumstances” regarding retrospective claims. I am looking to embark on a claim dating June 2011 and I understand that the cut off date has passed for this period unless there are “exceptional circumstances”. Is there any relevant documentation published by the NHS defining this ambiguous term?

    • Angela Sherman 3 years ago

      John – thanks for your comment. I’m not aware of any specific definition of ‘exceptional circumstances’. However, if the care authorities failed to properly assess your relative previously, failed to provide you with accurate information (or indeed any information) and/or failed to properly promote the claims deadlines in your area, you may be able to argue that you could not possibly have submitted your claim in time. This may be a hard battle, but it’s worth a go.

  73. Kelly Bishop 3 years ago

    I would so appreciate some guidance. My brothers are executors of my relative’s will, and one of them has been applying for NHS CHC funding for a relative (after she died) over the last five years. There is a little progress on this – but I have never seen any documentation and am dependent on my brothers to tell me, and we are not on good terms. There were only three of who were beneficiaries of the will. In a retrospective claim, would the funding automatically be paid to the whole estate – ie, can I be reassured that my brothers will not be able to exclude me from this?

    • Angela Sherman 3 years ago

      Any refund of care fees would go into the estate of your relative, and the funds in the estate should then be allocated to beneficiaries according to the instructions in the will.

  74. Ann 3 years ago

    Can anyone offer help with different problem please? My mother was a named next of kin and sole executor of her friend’s will. Her friend died and the claim for restitution has gone on for about 3 years. The claim is at the end of stage 2 which I believe is an interview? PROBLEM! Sadly, my mother has died and we have been told that the claim cannot progress, the claim has ended with the death of my mother. This means that any money owed back to my mother’s friend cannot now go back into the estate and be distributed to the beneficiaries. We have been told that only a next of kin ( real relative) can allow the claim to continue as they have a duty to the deceased – we agree – and feel it is our duty to see that the estate is shared out as per the will. We only know of one relative, a beneficiary, but he could not possibly have filled in any forms or provide any information since he lives hundreds of miles away and hadn’t seen his aunt for well over 25 years! Any help very gratefully accepted.

    • Angela Sherman 3 years ago

      That doesn’t sound right, Ann. You may need to consult a solicitor on this, though – choose one that specialises in Wills, Trusts and Probate.

  75. Lynn 3 years ago

    I have just received the outcome of a claim for my father who had dementia and passed away in 2008. He was in a care home for 5 years. I have received 5 checklists (one for each year he was in the care home) with the 3 columns A, B & C and the rationale for the decision. For the first 4 years the outcomes for full consideration is that he is not eligible for Continuing Healthcare. On the last one for the period 2008 (the last year he was being cared for, the conclusion is that is was eligible for full consideration for Continuing Healthcare. However, on the main letter I was sent it states that he is NOT eligible for any Continuing Healthcare. I would like some advice as to why I am not entitled to at least one full year of his care, when they state that he was eligible. What is this decision based on? I have yet to send back the sheet saying whether I agree or disagree these outcomes. I am going to send it back saying I disagree, as also some of the decisions seem to contradict themselves to me and I think that he should have been entitled to have more A’s than C’s which is what the assessor has given him.

    Do you think I have a case to claim for at least the one year they state he was eligible and has anybody else been in the same situation as myself?

    • Angela Sherman 3 years ago

      Lynn – the Checklist is stage one of the assessment process. If a person does not pass the Checklist stage, they are not eligible. (You can of course appeal.) If a person passes the Checklist stage (the scores are As, Bs and Cs), they are put forward for a full assessment for Continuing Healthcare (stage 2). Stage 2 uses the Decision Support Tool and the scores are Low, Moderate, High, Severe, etc. It is at stage 2 that the eligibility decision is made. So it sounds as though your father should have had a full assessment in 2008. This will help: http://caretobedifferent.co.uk/what-are-the-different-stages-of-nhs-continuing-care-assessment-and-appeal/

  76. Jilly gourlay 3 years ago

    Thank you so much for your reply, Angela. I now intend to seek solicitors advise and take this case further.
    I’ve already made an appointment to raise these issues with my MP – I’m determined not to go down without a fight!
    Once again – thank you for your advice and support. Your website is invaluable.
    I’ll let you know how I get on!

  77. Jilly 3 years ago

    After 6 very long difficult years, we have finally been offered a settlement covering my late mother’s care home costs(with interest)…..so don’t give up folks!
    However – before the offer came through, in September we were told that we could also add additional costs such as the sale of my mother’s property and any loss of rental charges etc. It was a family home, my grandparents before my mothers and we did not wish to sell it but as a family we had no choice as her care home fees were too much for any of us to fund. I sent mothers bank statements in to prove that she had insuffiencent funds in her accounts to pay for her care, which they have lost. We knew mother was not going to get better and come home so sold the property before we accrued debts.
    When I queried the ‘offer’, I was informed that I could only claim if we had defaulted on my mothers care home charges and if my mother had been threatened with eviction. I replied that this was an appalling predicament to have put my mother in and would have caused her and the family a lot of worry and anxiety. We are therefore being penalised for doing the right thing, at the right time.
    Do we have grounds for appeal about this decision? If so, what do we need to provide? More bank statements? My mother died 4 years ago now and the banks are unable to get these. I have however, contacted the estate agents who dealt with the sale and they have issued me a statement on what the difference in the property value of sale in 2011 to the present day valuation. Would this be enough?
    I would be very grateful for any advise you could give me.
    Ps. We have been down the route of seeing our MP, who was very helpful. He actually wrote to the Head of the NHS in our area….not that it did any good but it was good to get support. They also lost vital paperwork- care homes notes, proof of probate, took over 6 months getting GP notes. Even moved offices from one side of the county to another without informing me of their new address or telephone number, they have now lost their contract and another authority are now overseeing all the caseloads. I’ve left numerous messages on their answer phone too but no one gets back to you. But….I managed to find out the main switchboard number and ask for the complaints department and spoke to a lovely lady who went down the corridor and sorted things out. I had my ‘offer’ within 3 weeks. Brilliant!

    • Angela Sherman 3 years ago

      Jilly – I’m not aware of any such rule about having to have defaulted on care fees, etc. It sounds like nonsense. It sounds as though the NHS has also been shoddy and incompetent in handling your paperwork, and you should not be penalised for this. Regarding redress, this may help: http://caretobedifferent.co.uk/continuing-healthcare-redress-2/ You many also find that a strong letter from a solicitor helps, too.

  78. David 3 years ago

    We have been waiting for some news of our appeal which was lodged a couple of weeks before the claim deadline a few years ago. We have now heard that there is a meeting to announce the outcome which is scheduled this month. I believe my uncle, who has been dealing with issues since the outset, will be attending the meeting. Although he has been dealing with issues, the case has been handled by a claims solicitor as we felt it was too close to the deadline to work out what was supposed to be done. Do you know, if successful, if we will find out the amount that can be reclaimed at this meeting date? It has been so long coming, I am worried we will be given an outcome but still have to wait for them to calculate what is due. Also, is it true that they will also pay interest on the amount owed? Thanks

  79. C 3 years ago

    I had an ongoing retrospective claim for my dad. This was submitted in 2012. I have just received (April 2016) the decision of the panel which was made in January – he was not eligible!!!!

    My questions if anyone could help:

    – the panel made a decision in January, yet it took them 3 months to tell me the decision, do I have a case for them delaying telling me the outcome, i asked them numerous times for an update but were just ignored

    – the panel had 3 people on it including the person who did the review, should they have been independent of the person who did the review and all 3 worked for the commissioning unit (not the CCG)?

    – they have said i have 28 days to respond but they’ve had 4 years, this is unfair, can i have more time?

    Any help appreciated.

    • Angela Sherman 3 years ago

      Delays like these are sadly not uncommon – and yet so frustrating for all the families involved! Normally the decision making panel does not include the actual assessors; the assessors simply make a recommendation, which is then sent to the panel. The body responsible for the actual funding decision is the Clinical Commissioning Group (CCG), not the Commissioning Support Unit (CSU). Write and request more time – especially given their own delays.

      • C 3 years ago

        Angela, many thanks for your help, very much appreciated. I will post an update on how I get on with them. They are very frustrating to deal with, which is sad really as it could be such more efficient which would benefit everyone.

  80. Harry Adams 3 years ago

    We have been awaiting a decision on my late Fathers case for 4 years. Last week we received a letter stating that because we had left a period of over 12 months, from an assessment being made to making a challenge, the case has been rejected.

    My Father suffered a stroke in 2007 that left him completely paralysed on the left side of his body. It also resulted in his inability to swallow and was therefore on a PEG feed for the remainder of his life (some four years). He was also doubly incontinent. However, on my Fathers assessment sheet he was only assessed has having ‘A weakness on his left hand side’ and they would only ever class my Father as ‘medium band ‘and as such, self funding. We had my Father re-assessed in 2010 with the same result. Sadly he passed away in 2011 . We didn’t make an appeal within the 12 month period following this assessment, the reason being that we thought that with my fathers passing that was that.
    We heard about the opportunity to appeal in 2012 and therefore did so.
    My father had been in a Southern Cross Nursing Home which during the intervening years has gone into liquidation. All attempts to retrieve his notes have been met with a negative response until finally in March 2016 they admitted that they no longer had his notes or having any record of him being in the Nursing Home.
    My questions are, why would it take over 4 years to come to this conclusion, and is it worth trying to get the case re-investigated?

    • Angela Sherman 3 years ago

      It sounds as though the NHS didn’t give you sufficient information at the time about appealing, despite your father’s death. You mentioned that your father was assessed as ‘medium band’. There’s no ‘medium band’ in Continuing Healthcare funding and also none in Funded Nursing Care payments. Can you clarify what the medium band was for?

  81. Katherine 3 years ago

    My mother has late onset dementia, in her fourth nursing home and has begun falling over, getting black eyes and cuts on her face. She has been turned down for full funding and I am going to the appeal meeting tomorrow. Although I have put together a report with my conclusions as to why I feel she shouldn’t have been turned down I am still desperate to know what I can say to the hearing board. Please can you advise me.

    • Angela Sherman 3 years ago

      The same points outlined on this website, Katherine – stress the scores in the different domains and the nature, intensity, complexity or unpredictability of your mother’s needs; make sure the assessors have looked at underlying needs, not managed needs; make sure they’ve look at risks, etc. Most of all, make sure the local authority has been involved and that they have determined whether or not your mother’s needs are within their legal remit: http://caretobedifferent.co.uk/nhs-continuing-healthcare-should-social-workers-be-involved/

  82. Sue 3 years ago

    My Mums case has been ongoing since August 2012.She went into care in March 2010 having been in a dementia unit in hospital since July 2009. She was sectioned in. I have solicitors involved but not happy as they have accepted from the local PCT that she does not warrant continuing care from January 2012. This is because the staff at the home did NOT keep proper records on her. They are now apparently fighting to get care paid for since March 2010 to January 2012. Its a disgrace TBH. My Mother now is in a terrible state. Totally demented, doubly incontinent, does not know us any more. And this does not warrant the NHS to pay ? Its a joke.

    I am convinced the proper assessments have never been carried out.

    My question is how good is the Ombudsman? Any advice would be very welcome.

    • Angela Sherman 3 years ago

      That sounds very distressing, Sue. A lack of care home records does not equate to a decision of ineligibility, although we hear this often. Indeed, a lack of records means the NHS cannot prove that a person was not eligible. We’re currently carrying out a survey about the Ombudsman process, and we’ll be publishing those in due course.

  83. Mike Emm 3 years ago

    My aunt had Alzheimer’s and her GP arranged for her to be placed in a care home in 2003. I made a retrospective claim in 2012 for the period 1.4.2004 to 2.12.2006 when she died. I have been advised that she is not eligible for continuing healthcare and have been sent the checklist and Decision Support Tool for each year. These show a progressive deterioration. For the 2005 and 2006 assessments the RGN stated “Mrs Emm demonstrated that a primary need for healthcare is necessary”. I have a telephone conference booked for Monday afternoon, presumably a cancellation being short notice, and I should be grateful to know how to communicate the various ratings in an effective way. The checklists show she exceeded the minimum ratings (A’s, B’s & C’s) in each year, culminating in 4 A’s, 5 B’s and 2 C’s in 2006.

  84. Peter Leebetter 3 years ago

    My wife died way back in 2007 ! which was the year the application was made. I recently received a letter saying my application had been refused with no legitimate explanation as to why. I have appealed and asked for the details which were supposedly considered by the panel, no reply to date. What a charade on the part of powers that be.

    • Angela Sherman 3 years ago

      It does indeed sounds like a shambles, Peter. They must provide you with a written rationale for their decision. You could contact NHS England directly and ask for an Independent Review. https://www.england.nhs.uk/contact-us/

  85. Paula Whiteley 3 years ago

    As with many others, I’ve been waiting patiently for an outcome to a claim that I submitted in February 2012. I did get an interim Primary Trust letter saying that Nursing Home records couldn’t be obtained which was very annoying. Thankfully I was on the ball after my mother’s death and requested copies of all GP, care home and nursing home records (which were inches think). Due to the weight of documentation, my sister actually drove the evidence to the NHS to hand deliver it (and obtained a signature for it!). Pretty sure that someone on the decision making panel will still find a reason to get out of paying, even though her list of serious medical issues were as long as my arm. So frustrating!

    • Angela Sherman 3 years ago

      Yes, it can be very frustrating, Paula. Given that the NHS announced it was happy to look at claims back to 2004, they should also accept that some care records will no longer be available and make fair decisions despite this.

  86. Susanna Beaven 3 years ago

    I have replied to the NHS letter regarding them closing the case and now awaiting their reply. The NHS has the assessments from 2000 to 2004 and the ones lost are from 2004 to 2006. The NHS letter stated that my mum deteriorated in the last year of her life however in the absence of care home notes (destroyed after three years, my mum died in 2006) the MDT is not able to determine the Primary Health needs of, complexity and unpredictability. The quality and quantity of evidence available is insufficient to the MDT to be able to make a recommendation on eligibility. Surely this can’t be right. Thank you for your support and advice, I don’t think I would have got this far without it.

    • Angela Sherman 3 years ago

      Thanks for your very kind words, Susanna. You may want to have a look at some of the comments on the ‘Welcome’ post on our Facebook page regarding retrospective assessments: https://www.facebook.com/CareToBeDifferent/

  87. Susanna Beaven 3 years ago

    Please can you help? I have been told today that the have closed the case on my mum due to insufficient evidence. Its the Primary Care trust that have lost my mothers assessments. I requested the assessments seven months ago. The have made the decision on mums GP who said fulfilled the criteria and my criteria form. My sister received a letter from the NHS trust saying that there was nothing wrong with my mum and that they would increase her fees. Unfortunately we don’t have this letter. I’m now at a loss, it seems so fortunate for the trust to lose the assessments.

    • Angela Sherman 3 years ago

      Susanna – if it’s the NHS that has lost the assessments, your mum should not be penalised. I’ve heard this from many different people, and it’s very low behaviour on the part of the NHS – not to mention incompetence on losing vital documentation. A letter from the NHS saying that your mum does not have care needs is not at all the same as a proper assessment with full assessment notes.

  88. Jean Batchelor 3 years ago

    I applied for retrospective continuing healthcare in 2012 for my father who died in 2011.
    I have just had a letter informing me that this has been rejected as the nursing home records have been destroyed and the GP records were not forthcoming. This sounds like a ‘cop out’!

  89. FedUp 3 years ago

    I have been fighting for continuing health care for my mum who ism still here for 11 years.

    • Angela Sherman 3 years ago

      That’s such a long time to be fighting for funding. I can certainly understand why you’re fed up with what goes on.

  90. kerry 3 years ago

    I have a question about retrospective claims. For care costs between April 2004 and October 2007 cases were decided on different criteria depending on where you lived and the assessment and reclaim will be based on this. Is there any legislation that CCGs should abide this directive. If so are any documents available?

    • Angela Sherman 3 years ago

      Hi Kerry – can the CCG actually produce written criteria that was used in their area from 2004-2007?

  91. Mike 3 years ago

    I have been advised that my claim will be refused because they have not been able to access records from some of the care providers. The problem is, that the providers are advised that they only need to retain records for 6 years. I feel particularly aggrieved that the NHS should have been aware of this and their delay has possibly compromised my case. After all their delay I now have a very limited period to provide additional evidence to appeal the case.

  92. Abbie Pearson 3 years ago

    I too have lodged a claim for my late mother who died 2007. I must admit the actual process in my case has so many flaws:
    1.After sending all relevant documentation on time the clerk at the relevant retrospective care team forgot to load all my late mother’s details onto the system, and I only knew when I received a letter saying my late mother’s case would be closed because I hadn’t sent in the documentation! I was livid, so I called them and the clerk remembered me sending them. What she didn’t do was load them onto the system!!!
    2.In 2013 I called re any progress….I was told they were waiting for medical records. Four months later I called re. any progress; the reply was waiting for medical records. This happened over two years. In the end I contacted my late mother’s GP surgery and spoke to the practice manager and explained the situation. She requested my late mother’s records from the archive and they were at the Surgery within one week ready for the Retrospective Team to come and photograph them……I had clearly been fobbed off and fobbed off even by the Retrospective Manager who told me he would personally go to the archive and copy these records and this had been going on too long…..That is All Rubbish!!
    3.In September the Nurse Advisor called me and asked questions relevant to my mothers case. She said she would write it all up and would call me within two weeks (this didn’t happen). Then I received a call from the Nurse advisor just bfore Christmas 2015 asking if I had read through the documentation she had sent me and was it correct. I replied that there were one or two things that differed from the reality. She told me this would be sent onto the panel. In January I received a call from the Retrospective Review Team (RRT) saying the Nurse advisor was ill and my mother’s case couldn’t be dealt with till the Nurse advisor came back to work. As of today I heard not a thing so I have just called the RRT and spoken to an advisor who could only tell me that she would ask what the situation was? I have been told my late mother’s case has been to panel and they are typing up the minutes…..Why am I am sceptical this is the truth? Also I was told now it has to go to CCG and some other body before a decision???
    I have never ever seen such a badly organised, ill-thought out outfit in my whole life.

    • Angela Sherman 3 years ago

      What a shambles of a process, Abbie – I can certainly understand your exasperation and your feelings about what’s been going on.

  93. Barbara 3 years ago

    I am delighted to discover your website as I thought I was alone in the frustration of retrospective funding claims. It would appear I am not! My mother died in 2007 and our claim which we started in 2012 apparently progressed through the initial checks for it to go to panel in September 2015. I assumed that panel will say “yes” or “no” . However I have been advised that it isn’t that clear cut. Why does the decision of that panel have to go through various checking processes before I can be advised of its decision? In Sept I was told I would hear something in January. Yesterday when I rang to enquire about any update I was advised it could be another 5 months.!

    • Angela Sherman 3 years ago

      I am always suspicious when the process suddenly acquires extra layers or stages. It should be straightforward. If the panel felt there was insufficient evidence for a decision to be made, that’s one thing, but ongoing delays with no explanation are unacceptable. The delays in this whole process are a scandal in themselves.

  94. Andy White 4 years ago

    My mother died in a care home in February 2009. She suffered numerous TIAs resulting in Vascular dementia. I looked after her for ten years , but eventually had to make the difficult decision to place her in full time care where she stayed for 4 years before she died. I sold her bungalow to pay for her care and by the time she died, the £650 a week fees had virtually used up the proceeds of the sale. For the last 18 months of her life she was unable to communicate and her weight dropped to 4.5 stones. She had other health issues as well. Unfortunately, most of her records were destroyed in a flood, but there are doctors’ and hospital records. I put in my original claim in October 2012 and returned the Needs Portrayal on 28 August this year. When I telephoned to enquire when it would go before the Review Team I was told that the living have priority over the dead and I had to prove medical need as opposed to end of life needs. So, after three years I’m in limbo and don’t know when my Mum’s case will be reviewed or whether it has a chance of being approved. I feel totally powerless. After going through this process on my own, I wish I had found your website much, much earlier. Your advice would have been a great help.

    • Angela Sherman 4 years ago

      I imagine that’s all been a hugely difficult experience, Andy. The NHS is taking ages to review claims, and it’s very frustrating for many, many families.

    • Veronica Gilbert 3 years ago

      Hello Andy
      I have just had my late Mother’s decision yesterday. Ineligible unfortunately. I’ll now speak with my sisters about an appeal but their decision was that her care was social care only. Mum had vascular dementia, was admitted to the care home after a fall as a temp thing but they said she needed 24/7 care. NO assessment was made at the time and we were told self funding only option. We’d earmarked this home anyway. However, she was aggressive, violent at times, wouldn’t eat, incontinent. Again all social needs according to the DST. Basically they are saying she had no primary health needs. The last 6 months of her life were in a floating bed, being spoon fed. She died weighing 3stone. The documentation from the care home was not a daily record on the NPD, but a sad one for me and my sisters to read. I never realised the extent of her aggression. I’m not sure I can cope with an appeal …
      I wonder if anyone else has been in a similar situation and appealed, successfully.

      • Andy White 3 years ago

        Hi Veronica it sounds like your Mum’s circumstances were the same as mine. I too received an answer yesterday giving exactly the same reason. As you say – hugely upsetting reading that I couldn’t face yesterday. But I will face it later today and double check whether she fit the criterion. Didn’t Government say that they had reclassified dementia as a medical issue that qualified for funding, which was why I made the claim in the first place. I will do loads of checking and then if I think it’s worth it, I will take legal advice on making an appeal. Isn’t it strange that so many nursing home records have been destroyed! I think I smell a rat. I’m sorry I didn’t reply sooner, but I’d sort of given up on ever receiving a decision. I will keep posting my progress in the hope that it will either help other claimants or maybe find other claimants who are going through the same process. There is always more chance of success if there are a number of the same sort of case.
        Has anyone made a successful claim? and if so, how did they do it. I reckon the refusals are a massive, collective copout.

        • Sue Hardy 3 years ago

          Andy, we are also in the midst of making a claim for our late father who had dementia, as well as many other issues. Falls, incontinence, diabetes. I have put forward our retrospective claim to the “agents” who act on behalf of the NHS. I know it is outsourced, but cannot prove it. They seem to be the buffer before any cases are passed to the CCG for final approval. There are young men and woman who have sales skills and a quick turnover of staff so there is never any continuity. I ensured that I included ALL the care home and hospital records, highlighting any events qualifiying towards either one of the 12 domains. It has now been 12 months and I have been told that, although they have all the evidence, they will not be passing this on to their NHS qualified nurse for reviewal until the NEW PROCESS is put in place. I would be very interested if anyone knows if new regulations are being drawn up. The agency would not divulge any further information on this new process.

  95. Melanie 4 years ago

    I have been waiting for a decision on retrospective CHC funding for my father (who sadly died in November 2011) since September 2012. We are really no further forward in the 3 years we have been waiting but have just been told that all of the council’s social service records for my father have been destroyed in line with their ‘information retention policy’. How can this be given that they should have been aware of our pending claim and the fact that the delay has not been from our side but theirs? What should we do now?

    • Angela Sherman 4 years ago

      I agree that it’s highly questionable why those records have been destroyed. It’s not just the social care records that you need – it’s important for all of your father’s care records to be taken into account, and these could indicate that he should have been funded. The NHS should proactively obtain those records, and evaluate them properly, and there are various sources for those – not just Social Services. This may help: http://caretobedifferent.co.uk/supplying-evidence-for-continuing-healthcare-assessments/

  96. Rich 4 years ago

    I’m trying to get a favourable assessment in respect of my now dead mother (I have evidenced I am the executor to the trust). The assessment seems to ignore social worker input, hospital records (she was discharged directly to a home at the hospital’s insistance) and prior needs e.g. ambulance records and care providers – who visited 3 times a day before she fell and was admitted to hospital. Like so many others, this has dragged for years (4 since I lodged the claim and 5.5 since she died). I have asked the trust for the records they hold and upon which they made their decsion to refuse funding (in 2014). They refuse to provide records they hold that were obtained elesewhere e.g. from the care home because it is the home’s record rather than the trust itself. Is this correct?

    • Angela Sherman 4 years ago

      It sounds as though the CCG is being less than transparent – to say the least. You should be fully involved and it should be clear what evidence has been considered. As your late mother’s representative, you should be able to see the evidence that has been considered. If you don’t, you can’t reasonably fight on behalf of her estate.

  97. Sheila 4 years ago

    My Mother died in 2011 having been in a care home with severe dementia and requiring 24 hour care. We submitted a retrospective claim for continuing care in 2012 before the deadlines. We were notified that the NHS would reach a final decision by August 2015, however we have now been informed that in line with the agreement by the Parliamentary and Health Service Ombudsman that all case will have an INITIAL assessment and decision letter by 31 March 2017!! This is a completely disgraceful situation as over 3 years to look at this so far seems to be more than sufficient time.

    • Angela Sherman 4 years ago

      You’re absolutely right that it’s a disgraceful situation. Sheila. I don’t know your case, but from what you’ve written it sounds as though they are being exceptionally slow. Keep putting the pressure on if you can.

  98. Sue 4 years ago

    I have had a retrospective claim running since 2012 and no nearer to any answer guarding my very seriously demented mother who was sectioned in July 2009 and then placed in a home in March 2010. I have a solicitor on this but I have heard nothing from them since November so this morning they have received another email from me asking what is going on. The answer is always the same there are so many claims etc. Does bringing the MP into it do any good?

    • Angela Sherman 4 years ago

      Thanks for your comment, Sue. Getting an MP involved can help, but it depends on the MP. We’ve had mixed reports – some are helpful and proactive, others are not at all. It may be worth a try, though.

  99. Louise Bentley 4 years ago

    My Dad died in January 2006 and my Mum in November 2006. They were assessed as needing medium level care in a nursing home. As they had a house we had to fund the rest of the nursing care at a cost of £500 per month over 2 years. I always felt they should have been fully funded by the NHS, as both were very seriously ill and dying. So in 2012 I applied for a retrospective review for both of them. It took the NHS CCG until 2015 to actually agree an assessment and do the needs assessment applying the standard now, not as existed in 2005/06 when the assessments took place. However it turns out that all hospital records have been destroyed, for both my parents a year ago. The CCG team have copies of my parents records and are refusing to disclose them as they say they are prevent by Data Protection rules as they don’t own the records – as they belong to the old NHS!!! So I have no means of checking the accuracy of the information which has proved to be suspect, including an entry that my father had malaria, just prior to his death, which is news to me. More upsetting is that I learnt that my mother had MRSA in a sore on her heel for at least a year before she died. She broke her hip 18 months before she died and the sore appeared shortly thereafter. It meant that she couldn’t walk because of the pain. None of this is being taken into account in the assessment, other than a statement that she had it. When challenged via a complaint I was told it wasn’t relevant to her needs. Further all care records have been destroyed, so looks as if I won’t stand a chance. I have complained and had a response re the records and they will not disclose them, probably they are worried I might sue as clearly my Mother wasn’t properly treated for the MRSA, but how on earth can this go for consideration of CHC funding without any care records or information???? What do I do now?

    • Angela Sherman 4 years ago

      Louise – you said, “As they had a house we had to fund the rest of the nursing care…” It’s not a person’s assets that determines whether they pay for care – it’s the level of their care needs. Whether or not your parents had a house should have been irrelevant in determining whether they had to pay for their care. The CCGs statement about Data Protection sounds like a very feeble and ridiculous excuse on their part. There should be no problem with the care notes. It sounds like a very distressing situation. You may need some help to get access to the care records and counter what the NHS is saying. If you need any contact details, feel free to send us a note via the contact form below.

  100. jeanette 4 years ago

    Hi, does anyone know where the nurses reviewers come from? are they employed by the CCG or is there a company that contracts out work like an agency. Would be interested to know if the nurse reviewers have the capacity to make independent decisions if they are employed by the nhs?

  101. Kate Burton 4 years ago

    Angela, I’d really like to thank you for all the practical and thoughtful information available through your website. By buying your e-guide, I was well informed for the multi-disciplinary review and challenged the CHC assessor whose role appeared to be to belittle my mum’s needs. Being so well prepared enabled me to get partial CHC approved for my Mum and saved us more than one year of nursing home fees – more than £50,000. They seemed to set an arbitrary date from which it was awarded and then invited me to make a back dated retrospective claim for the time from which I claimed. This seems to be a great delaying tactic. But maybe it was a way of them being able to give us some funding on limited budgets. I’m now told that the CHC team are outsourcing the claim to a third party because they have such a backlog and they’ve taken several months sending backwards and forwards more forms to get approval for it to be outsourced. They think they may get some recommendation through by the end of 2015 if I’m lucky. So maybe we’ll hear more in 2016. The relentless bureaucracy makes me so frustrated, but it sounds like some people have had much longer waits. Ours has only been going for nearly three years.

    One of the things that upsets me the most is that I am educated, persistent and good with paperwork. I feel I’m in the minority here. I know my daughter would not be able to do this for me if I get Alzheimer’s too. So many people who deserve this funding do not get it because they have no hope of getting to understand the system and persist through it. The authorities are banking on ignorance. Mum has now died and my experience of the last three years of her life has been one where the loving relationship with her got subsumed by endless paperwork. Thanks again for what you’re doing to support us. Grief plus bureaucracy is a rotten mix.

    • Angela Sherman 4 years ago

      Thanks very much for your kind feedback, Kate. I’m sad to hear that your mum had now died. Sorry for the late reply – and well done to you for persevering. The funding should have been automatically backdated to day 29 after the date of the original Checklist, so I agree with you that making you claim backdated fees seems like a delaying tactic – and certainly a way of trying to avoid paying up in full. It’s outrageous really.

      There is a huge backlog of care funding claims. The last figure I read was 40,000 claims stuck in the system. You’re right that having to go through this whole process, at a time when someone you love is dying, and having to make sense of the care funding system, battle maladministration, write endless letters and appeals and all the while manage the rest of your life can be a horrendous experience. And for those who are less confident or perhaps not as able to challenge the assessors and put together all the appeal documentation, it’s even worse.

  102. Elspethblack 4 years ago

    Panic over regarding the assessment carried out in 2011 not being looked at. I rang the CCG this morning and they told me that the whole period from 2008 to the date of our mother’s next assessment would be looked at. Our mother’s assessment is scheduled to take place at the end of this month. Fingers crossed!

    • Angela Sherman 4 years ago

      Good news.

  103. Elspethblack 4 years ago

    I sent in an appeal against the decision of my mother’s continuing care assessment on 21 September 2012 (this was the deadline for appeals at the time). They wrote back to me asking me to confirm that I had Power of Attorney and I also completed a Continuing Care Authorisation form for the release of confidential medical/hospital/social information. This form also asked for the date of claim which I completed to show 2008 to present (September 2012). When I rang last week to check the progress of the claim, I was told that another assessment had been carried out in 2011 and that I wouldn’t be able to appeal this assessment as you only get 6 months. Although my sister attended the assessment, she never actually received written confirmation of the decision. I have two questions that I need help with 1. Why would the appeal I submitted in September 2012 not cover the assessment in 2011 and 2. Would the fact that we did not receive written confirmation of the decision be reasonable grounds for an extension of the deadline for appeal? The lady I spoke to said that confirmation would have probably been sent to the care home, but I would have thought my sister would have received something in writing too (she has joint Power of Attorney). I would be grateful for any help anyone can give me on this

    • Angela Sherman 4 years ago

      Absolutely right, Elspeth. The NHS failed to properly go through the assessment process, and if they also circumvented the power of attorney (i.e. your sister), this is a serious matter. It sounds as though the person who has told you it’s not possible to appeal is either trying to put you off or doesn’t understand the NHS’s responsibilities in this regard. You should most definitely have received a full copy of all assessment notes – and been kept in the loop at all times.

  104. Maureen 4 years ago

    Having sent in all the requested documents for my claim to be considered, I am informed that they will not review my case as I have not supplied my husbands Will (still tracing). I have written stating that it is my understanding that the review is to determine if a refund is due, if so, in which case the proof of beneficiaries of the estate will then become relevant but not before the review has taken place but its like talking to a machine.
    Has anyone had a similar issue?

    • Angela 4 years ago

      Hi Maureen – If your husband is still alive, a power of attorney or deputyship order is what you need to act on his behalf. If your husband has already died you’d need to show you had/have the authority to act on behalf of his estate. However, the actual beneficiaries in his will are irrelevant, as you say.

  105. Greta 4 years ago

    Hello Angela, Many thanks for your reply which I only noticed today as I was waiting for a reply to my NH Clinical Commissioning Group.
    I sent them a letter replying to the Checklists that they sent me,( one of the years is a complete duplicate) but I have not told them this yet, stating that I was not in agreement with their decision. I requested copies of Needs Portrayal and Decision Support Tool including all years that have not been seen eligible to be assessed.
    I also requested all evidence and information the reviewer looked at and everything the Panel saw prior to making their decision.
    I spoke on telephone with them today and was told if the Checklist is negative this is the end of the process and they do not supply Needs Portrayal and Decision Support Tool. (she was about to send me 7 years of Checklists, which I already have).
    They told me if I dont agree with their decision I need to make a complaint! This is what I thought I had done??
    Is this correct – have I read your website incorrectly – are they right, and am I wrong??

  106. greta bresgall 4 years ago

    I would very much like advice as I am now overwhelmed with paperwork trying to claim for my mother Retrospective NHS Care. Stages I have already been through:
    1) Sending in all documents relating to monies paid out, i.e. this related to 7 years of monthly bank statements, they also required the totals that we were claiming, together with any documentary legal paperwork
    2) Nearly 2 years later, received Decision Support Tool for NHS Continuing Healthcare, for the 1 year out of the 7 claimed for.
    3) As requested I wrote a Report (7 pages) stating why I disagreed that only 1 year was allowed.
    4) I have now been sent back NHS Continuing Healthcare Checklist for the 7 years, which states that claim has been considered by the Clinical Eligibility Panel, and that full assessment was not required.

    I do not think that certain things in my report were noted, and they are certainly not mentioned in the Checklist.
    Although when I liase with them they only keep reiterating that it has to be a “nursing care need”.
    I feel that of all the articles I have read and people I have spoken to, this is NOT the case.
    I need help/advice in moving forward please.

    • Angela 4 years ago

      Hi Greta – it can certainly be a frustrating process, and many people question not only the validity of the process but also the way it is carried out in individual cases. If you need one-to-one help with your case, feel free to complete the contact form at the bottom of this page and I may be able to put you in touch with someone who can help you. http://caretobedifferent.co.uk/contact/

  107. Pauline Hardinges 5 years ago

    I have been helping people to obtain NHS fully funded healthcare. One case I came across was totally unlawful, where a person had late stage Alzheimer’s, cancer, renal failure, heart disease and other medical problems. The hospital needed his bed but would only release him into a nursing home to maintain his level of nursing care. however for some reason a social worker did a financial assessment and found he had a house, a week later all his needs had been downgraded to mediums and lows, so he no longer qualified for CHC. He died a week later.

  108. Mick Statham 5 years ago

    I have been waiting since August 2012 and have recently been told it will take 5 years. The person I was talking to wasn’t sure if this was 5 years total or another 5 years!

    • D Jolly 1 year ago

      Mick I started on the merry go round approx. same time. Have won just under 2 years 3 months refund but in Dec 2017. Just starting second round June 2018. They hope you will give up!

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