NHS Continuing Healthcare retrospective reviews – 7 tips

NHS Continuing Healthcare retrospective reviews – 7 tips

NHS Continuing Healthcare retrospective reviewsCan NHS Continuing Healthcare retrospective reviews be fair if the reviewers have never met the person being assessed?

It’s a big question. And an important one. It cropped up recently on our blog and we’re expanding on it here.

In many NHS Continuing Healthcare retrospective reviews, families will be pursuing a review for a relative who is still in care, but who has not been properly assessed for NHS Continuing Healthcare funding.

In other cases, however, the person being assessed will already have died. Their family will be questioning whether the person should have actually been charged for their care – and a retrospective review may follow.

Let’s look first at some of the problems that occur in NHS Continuing Healthcare retrospective reviews.

This is not an exhaustive list, but it highlight some of the things families mention the most:

  • Many people feel that if they are pursuing a retrospective review for a relative who has already died, their Continuing Healthcare funding case is already compromised. Why? Because the whole thing hinges purely on the quality of historical care notes and written evidence about care needs.
  • What’s more, those notes may have been written by health and social care people who no longer work in this field, and indeed the care provider may no longer exist.
  • It’s also not unusual for the quality of care notes to be very poor.
  • Some families find that notes and reports and letters from therapists, medical consultants and other clinicians are written in very conservative terms – and sometimes with what seem like stock phrases. It means that information may fail to reflect the actual practical, hands-on, day-to-day needs of a person in care.
  • Also, many health professionals do not seem to understand what their notes and reports might be used for. It means that, sadly, many medical reports and notes do nothing to support a Continuing Healthcare funding case – even when it’s obvious the person in care is/was eligible.
  • Once a retrospective review is underway, the reviewer will produce a Needs Portrayal Document (NPD). This is supposed to capture a full picture of all care needs for the period of time being reviewed. However, many families report that their NPD has been full of inaccuracies, that the information has been cherry-picked from the care notes to give an unduly positive picture of need, and that whole periods of care have been missed out.

So what can you do?

7 tips to help you with NHS Continuing Healthcare retrospective reviews

Again, this is not an exhaustive list of everything you need to keep in mind, but it addresses some of the most common issues.

1. Just because a person may have died, it doesn’t mean that mistakes potentially made by the Clinical Commissioning Group (CCG) assessors in the past no longer count. Such mistakes could be, for example, the CCG failing to follow the correct procedure in a previous Continuing Healthcare assessment – or failing to even carry out an assessment at all. The CCG is answerable for these mistakes and the impact they have had.

2. Remember that in any retrospective review, just as in any current assessment, it must be clearly shown whether a person’s needs were within the local authority’s legal remit for care or whether they were outside that remit. If they were within it, the person would have been means tested. If their care needs were beyond that local authority legal remit, the NHS should have paid for care through NHS Continuing Healthcare funding.

3. If the evidence and/or care notes are inadequate, the CCG cannot simply conclude that a person did not warrant Continuing Healthcare funding. It is not the fault of the person being retrospectively assessed that evidence lacks integrity. Read more here about care notes being inadequate.

4. In an NHS Continuing Healthcare retrospective review, you should (as the family) be asked for your input – just as you would be in a current assessment. This may take the form of a Family Statement of Needs – a written account from you about your relatives care needs and why you believe they should have been receiving NHS Continuing Healthcare funding. It’s vital to make this as detailed and comprehensive as possible. Go through each care domain (Behaviour, Cognition, etc.) and build a case for the score you believe your relative should have been given. Also highlight every aspect of intensity, complexity and unpredictability in their care needs. Find links to the Continuing Healthcare eligibility criteria here.

5. If you ask a consultant or doctor or therapist or other clinical to write something in support of your case, make sure they understand what exactly this will be used for. Vague opinions about your relative’s health are pretty worthless in the Continuing Healthcare process; instead, you need something that highlights the severity of their specific care needs and that positively supports your case. Otherwise they may inadvertently write something that actually weakens your case, for example a phrase such as “Mrs X is has advanced Parkinson’s and is unlikely to recover.” It says nothing about the actual care needs.

6. Make sure you understand the difference between social care and healthcare needs – and make sure that anyone supplying evidence on your behalf also understands this. It is shocking to read how often health and social care professionals don’t seem to grasp this – and yet it’s fundamental to every single NHS Continuing Healthcare retrospective review.

7. When you receive the Needs Portrayal Document from the retrospective reviewer, go through it meticulously. Challenge anything that is incorrect, misleading (including the language used) or missing.

What other tips would you give families in this situation from your own experience?



  1. Diane 5 months ago

    I just wondered if anyone could advise as to whether if a retrospective claim was acknowledged and we don’t have Letters of Administration ,grant of probate or a will, are we still able to ask for the records and receive payment if the claim is successful? The estate had fallen to less than £30,000 after carehome fees of £1,300 per week. We had power of attorney previously and my sister had a joint account with my father.

    • Care to be Different 5 months ago

      Hi Diane – In our experience you will need to obtain Probate or Letters of Administration and produce proof of payments made for the care on the event of a successful claim. Kind regards

  2. D Jolly 1 year ago

    Hi everybody I have won the first part of my late mothers claim retrospectively. We won the first 2 years 3 months of her claim but was turned down for the last 2 years 5 months of her life, we are now going for a local resolution meeting at the CCG .They had originally turned down the claim and had it reassessed but were forced by a rule so they paid up just under half . On the Decision Support Tool (DST) the very next day the scores most of mysteriously were downgraded ??? its no surprise after reading the many comments on here, I wont go into the many needs as many are already covered by the many posts. Just to say a very deaf CVA into Hospital discharged without A DST should have been according to the Care Act local authority asking if she had a house. DST done approx. 3 months before she died. No notification for family rep. The report really surprised me – She was playing Bingo/taking part in discussions wheeling herself around to the lounge what a surprise to us (did they really see the right person). A pack of lies. I am due to speak with the solicitor about the meeting about what points I should object to. She certainly didn’t improve in the last 2 y 5 months until she died. This 2nd part of the claim is from 2008 to 2010 so a long time ago. If anybody has any tips for me to use in the continuing fight I would really appreciate any help. Have got the book – thank you for the website, will carry on but it doesn’t half wear you out. It’s designed to I know.

    • Anne Fraser 2 weeks ago

      HI, It may be too late for this posting looking at the date of yours, but knowing how long these things take I may just be in time. I know first hand, how frustrating and at times heartbreaking to read an nurse assessor’s (NA) report on the abilities of a close relative when appealing for retrospective NHS Continuing Care. Like you, we won part of the claim (all but the first 8 months). Also like you, it was written that my relative played bingo and cards, read books, watched films on TV, knit etc with no need to wear glasses, perfect hearing and ability to walk around unaided. When applying for NHS CC I purchased all reports and medical documents from the hospital. I had most of these but wanted to ensure I had everything. I carefully read each part of the NPD and found professional medical evidence to discredit what was written. I went back to a consultant’s report written 4 years before my relative went into care, which stated that my relative believed the year was 1922, had hearing problems and needed to wear glasses and that she had deteriorated since his last visit, which was to be expected due to the nature of her illnesses. Another report from before going into care stated that her Parkinsons disease was now at a stage where she could not hold a cup because of the tremor. It also stated that on the day of this particular report approx a year before going into care she was able to weight bear and walk a couple of steps with difficulty, but had been unable to walk at all the previous day. I went down each section finding something that discredited what the NA (who had never met, consulted with or cared for my relative) had written. I found numerous statements from five consultants and two psychiatrists which disagreed with the NA findings. I’m sure there will be evidence in your relative’s reports to help you. I could disprove my mother could play bingo and cards because two Parkinson’s disease consultants had documented in their reports her inability to hold an object due to her tremor. A psychiatrist said she was not aware of the date or time, had difficulty word finding etc, etc, so playing cards and bingo would have been difficult or more likely impossible. The consultants in their reports also said she had poor eyesight and needed to wear glasses and that her hearing was poor. Therefore using extracts from medical professionals reports and letters I explained it was highly unlikely that my relative could participate or enjoy the activities the NP advised she participated in. I said, I believed she may have been sat in front of the TV, the same as others, but her enjoyment needed to be questioned in light of her vision (she was sat in front of TV without glasses) and hearing problems not to mention her inability to follow storyline. It is annoying and frustrating and also disrespectful when the NPD is written by someone who does not know your relative and the statements made are so wrong and often made on assumptions. My advice is don’t get annoyed or frustrated. Keep calm and read what is said in the NPD. Then go through the findings of the consultants, psychiatrists and others who knew and had responsibility for your relative’s health. For each reason put forward on the NPD find evidence from the time to prove it’s incorrect. It takes time and patience, but evidence to the contrary will be there. I’m not aware of the outcome of my appeal yet, but I do feel that I discredited the NA findings and to a degree, if nothing else, put the record straight. I may need to go to the next stage and will do so if necessary. Just remember it’s easier for you then the NA to give a truthful and accurate account as you were there and know first hand the problems. You just need documented evidence from the time to backup what is the truth. Good luck.

  3. Kim H 1 year ago

    I have just been to an Independent Review Panel (IRP) who decided that for a part of the NHS Continuing Healthcare (CHC) dates (Dec2015-Mar2016) my mother-in-law was not eligible. However, they advise that they “recommend to XXX that they complete a retrospective review of X’s eligibility for NHS Continuing Healthcare from 1 April 2016 to her death. This should include the completion of a Needs Portrayal which needs to be discussed with Mr and Mrs X to ensure all of Mrs X’s needs are captured. This review will enable the CCG to fully review Mrs H’s care needs during and post the Mental Health Crisis of April/May 2016 and robustly determine whether or not Mrs X was eligible for that period of time as well as for the reminder of her life.”

    Are there any rules on timescales, process of this that they should follow? We have waited a 6 weeks now from when they were advised and still no contact.

    Any suggestions/advice/experience will be gratefully received! (This has taken 3 years to get to this stage!)

    • Kim H 1 year ago

      I have just received an email from Senior Nurse Reviewer asking for various legal documents (as my mother in law has now passed away) plus “retrospective review questionnaire”. This resembles the Decision Support Tool for the 12 Domains but is mainly questions with Yes/No boxes and a summary box at the end of each section.

      Has anybody else come across this before? And can anybody give me details of who this fits with the whole process? [I have so much information to include but want to make sure I include it at the appropriate point!]. Thanks in advance.

      • Leila 11 months ago

        Hi Kim, I’m just wondering what legal documents were required from you as your MIL has passed away. My mother passed away just before we sent in request for IRP. I have been through the local resolution meeting which did not uphold our appeal so just waiting for IRP date. NHS England have asked for Grant of Probate. I am executor named in the will but i did not need to get Grant of Probate to settle her estate. If I win the appeal and redress due I will obtain Probate a cost. But to obtain one without knowing the outcome I am not happy with as it has a cost implication. I have offered to send them a certified copy of the will which names me as executor and beneficiary. Any advice please?

        • Kim 11 months ago

          Hi Leila I am sorry to hear that your mother has passed away. For the IRP panel, we were not asked for any documents (as before my husband had Power of Attorney for his mother) even though my mother-in-law had already passed away. When we applied for a Retrospective Review we were asked for the following:- Grant of Probate or Letters of Administration, A redacted copy of the Will showing the Executor / Administrator or beneficiary, ID documents for the Executor/Executrix, A recent utility bill identifying the Executor’s address Signed consent to release records (that they provided). For us, we had copies of all the documents as probate was conducted by a solicitor. Sorry I cannot be more helpful.

          I am not sure if it is helpful, but the Framework states “”that the term “representative” is intended to include any friend, unpaid carer or family member who is supporting the individual in the process as well as anyone acting in a more formal capacity (e.g. welfare deputy or power of attorney, or an organisation representing the individual).”. So I don’t see why you have to have probate, as you have been her representative throughout the process (unless they are making a payment). But then, I am not a legal person. Maybe somebody else can pick up on the legal side?

    • Paul 11 months ago

      When delays become intolerable try to work out who the person you’re dealing with is afraid of, not their line manager but the person whose voice on the other end of phone makes them sit up. I was kept waiting for months by the CCG’s CHC department for copies of health records to be sent to the IRP. The IRP didn’t seem to have any clout. So I emailed the CCG’s chairman, a GP, complimenting him on the medical care his organisation had given my relative but asking if he realised how his CHC department was undoing all that good work and bringing the organisation for which he was responsible into disrepute. 24 hours later the copies were on their way – somebody in CHC had had their ears burnt.

      Another way in is that CCG governing bodies sometimes have lay members on them to liaise with the public and ask questions of the CCG. CCG governing bodies don’t like having their dirty linen on the minutes. Getting the lay member to ask questions might lead to CCG action in order to forestall embarrassment.

      None of this is infallible of course. One of the biggest failings of the CHC regime is that there is no effective sanction on CCGs for delay or incompetence. Families can have their cases thrown out if they don’t respond expeditiously to points raised by the CCG, there is no corresponding sanction on the CCG. If a CCG risked losing a case because of inordinate delay the whole CHC process would suddenly become much more efficient.

      • Care to be Different 11 months ago

        Hi Paul – Thank you for your insightful and very useful comments. Kind Regards

  4. Mel 2 years ago

    Please can someone help me??

    I have won back NHS Continuing Healthcare (CHC) to March 2014 on a retrospective review. She entered the care home in 2012 and was initially turned down for CHC. I now understand it better and have tried to get it backdated. I have only won back to March 2014. Notes are very scant though her behaviour was always in question.

    I have been to the Alzheimer’s Society for legal help, (I am disabled and cannot afford to pay for legal help), and because of a lack of notes, the guy helping, who also used to be a CHC assessor, has told me I have a very weak case not worth persuing unless I have written evidence of Mum’s behaviour.

    I cannot get a definition of Local Authority Remit. The LA will not get involved – EVEN THOUGH I AM GOING TO AN INDEPENDENT REVIEW – the IR Panel will just get a social worker from another area to look at the notes.

    I am desperate for some proper support and advice. I would be happy to attack this myself but I am disappointed the advice comes with a price tag which prices me out of getting justice for my Mum’s name.

    If anyone can please be kind enough to offer me some free advice I would be extremely grateful. Thank you.

    • Conrad 2 years ago

      There may be documented evidence of your Mother’s behaviour (and other Domains) in: GP Notes, Social Services Notes or Hospital Records (if she was admitted to hospital in that time period). You should be able to request these notes as a relative, and/or Power of Attorney, Court of Protection Deputy or Administrator to her Estate.

      Surprised that the Nursing/Care Home doesn’t have those records.

      I found Angela Sherman’s guide on NHS Continuing Healthcare the most accurate guide – some of the descriptions of the situations occurring on Decision Support Tool, Local Resolution and Independent Review Panel meetings were very close to my own experiences of the system.

      Good luck.

  5. Conrad Jones 2 years ago

    After going through an Independent Review Panel (IRP) Meeting (after the LRP Meeting) – the IRP refused to define what was outside of the Local Authority’s remit, and also said that they would not discuss the legal aspects of that. The Representative for Social Services also asked for clarification over the legal scope of Social Services for providing care and no clarification was provided.

    My Father’s needs were deemed as being : 1 Severe, 2 Highs, 6 Moderates and 2 Lows
    The Multidisciplinary Team (MDT) recomended that he be placed in a Nursing Home due obviously to his needs ecen though no Checklist or Health Needs Assessment was carried out until after he was in the Home for over two months. He had severe dementia, Breathing problems (COPD), Heart Problems, TIAs, Mobility Problems and Behavioral Problems. This was considered as not sufficient for Health Care and was deemed within the scope of Social Care – even though Hospitals and Other Care Homes could not cope with his conditions. He (in my view) and my Mother who cared for him – were seen as a Nuisance despite his medical diagnosis.
    My Parents had worked hard all their life and they were never on benefits but they owned their own Home so were regarded as Self Funders.

    The IRP was basically the same as the Local Dispute Resolution Panel and seems to be a way of stretching out the procedure to discourage people from presenting their cases.

    We are now considering taking the case (for my late Father) to the Ombudsman.

    • Chris-G 2 years ago

      And yet Conrad, my father in law had a fall induced brain injury that disabled him and made him doubly incontinent and unable to walk. Otherwise, although a little confused at times, he was quite well in himslf if virtually bed bound. He subsequently had both legs amputated.
      It was not until he required further amputations and developed liver cancer that they took away the funding that he had enjoyed for six years, when possibly, less in need.

    • N Durnford 2 years ago

      Just because your parents own their own home, this does not make them self funders. Where there is still a family member i.e. partner or dependent living in the property, the property must be excluded. What will make them self funders is having over £24K per individual, but once their funds fall below this amount a financial assessment is carried for any potential Social Care funding.

      • Chris-G 2 years ago

        You can always ask the council to intervene, and do a financial assessment even when in a self funding position….. The Council of course, must carry out their own needs assessment prior to making a financial assessment. (If Continuing Healthcare (CHC) is indicated then they should delay that financial assessment until funding is refused), Their own needs assessment might well lead to a demand for CHC assessment with a full Multidisciplinary Team. Even if the council does not think that action is necessary….. You well might disagree if you saw their assessments. There again….. The council often creates Deprivation of Liberty Safeguarding documentation regarding some nursing home residents; that must contain the very severe needs for (imprisoning in effect) placing restrictions on another human being. If the needs they express are at variance with their own perhaps lowered social services needs assessments then you have potential evidence of a primary health care need….. And should demand a CHC assessment.

  6. Maggie 2 years ago

    Does a Severe cognition score mean that the drugs therapy score should be Severe also ?

    • Chris-G 2 years ago

      I have always argued that on the grounds that CONCORDANCE is required in the descriptor and concordance is actually defined at the back of the Decision Support Tool (DST), and if the meds are not simple pain relief (paracetamol) then there is a RISK of relapse….. The wording should match the need but they always try to ignore that with their remit to use ‘professional judgement’. According to our 2015 Independent Review Panel (IRP) chair, they are not allowed to do that because they must make their case for recommendation (using ‘judgement’) at the end of the assessment. Then and only then they can explain their rationale for using the correct descriptor but ignoring the consequences in making a negative recommendation. That is also why having two or more ‘Severe’ scores is not exactly the same as one ‘Priority’ level. If they did this they would of course have very many more appeals and as such they try to avoid the system crashing by doing it wrongly.

  7. Maggie 2 years ago

    My CCG recently carried out a Retrospective Review on my late Mother.
    We were given 10 days notice to either attend a Needs’ Portrayal review (which we could not do) or submit an “applicants’ view” as our response to the Portrayal (which we did.)
    Two weeks later, using this Portayal, there was a Panel review from which a Decision Support Tool was produced. We were refused permission to attend this meeting as the “CCG do not permit members of the public to the panel hearings”.
    Can the CCG order this restriction?

    • Chris-G 2 years ago

      Maggie, you cannot attend the eligibility panel meetings. I would appeal matters if they are not to your satisfaction. It takes time and energy that many do not or cannot expend. If the sum is sufficient to warrant chasing or the principle is your motivation then a lawyer might assist.

  8. Lynne Rodgers 2 years ago

    First I would like to say thank you for this resource.
    My mother was referred for Continuing Healthcare Assessment in February 2016. She was deteriorating with a 9 year diagnosis of Alzheimers and in a dementia carehome. A Checklist was conducted over the phone by the carehome manager in May 2016 which triggered stage 2 assessment. Stage 2 did not start until January 2017, the Checklist was repeated and the Decision Support Tool (DST) implemented, the Multidisciplinary Team meeting was booked but cancelled the day before because the social worker could not attend; 4 days later my mother died suddenly of a stroke. I am finding it very difficult to arrange a retrospective assessment, the CCG say they unable to proceed without a DST, the retrospective assessment team say they are unable to assess without CCG referral. Any advice please.

  9. Gillian Lindley 2 years ago

    The whole system is fundamentally flawed . Most of the assessors do not look at the health needs of the person but the managed needs which is completely different . My father had a severe stroke leaving him totally dependant on carers . He could not communicate – the assessors say he could – because in the notes doctors had said he could sometimes nod ( but not always appropriately !! ) Absolutely amazing since the day he had the stroke he never spoke another word.It is well known that stroke patients sometimes nod yes when they actually mean no . The behaviour and psychological domain were classed as low needs because nothing was ever written in the notes about his psychological state – The staff in these homes are usually there for the wage and not because it is a ‘calling’and the notes are pretty poor. I asked the assessor what do you think your psychologically state would be if you were a man of 60 -who had never been to the doctors in his life -had worked every day of his life- was suddenly totally reliant on staff to change your incontipads and change your catheter ,not being able to make any decisions in any aspect of daily living and having a bib put on every mealtime because you were unable to feed yourself etc ? He still got assessed as a low. Fortunately as a former nurse I did have an insight into the unfair process but after waiting over 5 years for the CCG to admit he did actually qualify for certain periods . I am at the point where I know I could appeal with their final decision but I want my Mum to see some of the money they paid out before its too late. This is what they are hoping for -The CCG are now putting obstacles in our way regarding payment . My dad died intestate but we didn’t need to get a grant of probate because there was nothing left in the estate after paying the care fees. The CCG say now that if the sum of monies to be paid back is going to be over £5000 which it is- my mum has to now apply for a grant of probate before they will give her the money – this is an absolute disgrace – it is criminal !!

    • Chris-G 2 years ago

      Gillian, thanks for your all too common observations. However, as regards the matter of the cash return. Was the money paid from a joint account?…… The survivor in such cases becomes the owner of a joint account without probate as far as I am aware. As such the situation is supposed to be returned to the state that existed prior to the ‘errors’ and if such an account existed then the money should be returned to that account or to the person that survived and perhaps had to close such an account. It is an opinion but it might be worth looking into especially if like us, the account still exists in both names. All the best, Chris.

      • Gillian L 2 years ago

        Hi Chris
        The bank account was in joint names but now the CCG are being awkward and will not pay back the money to my Mum without a grant of probate. They were quite happy to take the £50,000 of their money over the eight years my Dad was in care but somehow now they are finding it hard to put it back where it came from -it was money that my mum and dad had saved all their lives for their old age and it is absolutely disgusting that they are holding on to this money which is rightly and legally theirs.

        • Chris-G 2 years ago

          Did they take into account at first usage, that any joint account should have been halved before taking what was left for care funding? If not then they have effectively stolen some of the money. In addition they should not have taken money after it had reached the savings limits of around 14,000 and 23,000 pounds. Various rules apply once around 23,000 is left in savings. However 14,000 or so cannot be touched.

  10. Zoe Arkell 2 years ago

    Please can I ask for some advice…..
    I have received a demand from my local council for £5500 for unpaid nursing. home fees. The fees relate to 2015 when my mum was discharged from hospital after a nasty fall (my mum had MS) to a nursing home. I responded to the council and asked whether a Continuing Healthcare (CHC) Checklist or assessment had been carried out before they did the financial assessment, it hadn’t been carried out. I have now received paperwork to start the CHC process, my mum actually passed away in May 2016. If the CHC process was never carried out, can the council demand that I pay this money? Mum had MS and Alzheimers and went to a residential care home after the nursing home and paid in excess of £50k until she passed away. What should my next action be? Thank you, Zoe.

    • Chris-G 2 years ago

      Zoe, be like us….?? Don’t pay at all…… Make them take matters to court. A court is more likely to question the validity of your loved one owing the money in place of the NHS (who should be countersued by you at the same time). It is the council’s task to prove that only your loved one owed the cash and that will open the door for you to accuse the NHS and council of misfeasance and cheating in front of someone that will have to listen……. A Real Judge. If the money is eaten up then you can’t then pay it to the council even if you lost. Just a thought. But councils are risk averse when faced with the creation of more Coughlan styled case law because others can use it against them.

  11. Kate T 2 years ago

    In a retrospective review carried out for my mother recently, two nurse assessors completed the Decision Support Tool (DST) which identified health needs only and made a recommendation to refuse funding. A Multidisciplinary Team (MDT) meeting was convened whereby a social worker and a different nurse assessor verified the refusal of funding, the so called “final decision”. This all came from the Commissioning Support Unit (CSU). The social worker did not contribute to the completion of the DST nor was there any Needs Portrayal Document completed. At the local resolution meeting, a different social worker to the one at the MDT meeting of which I was not invited, admitted she did not know what my mother’s social needs had been! And also admitted she had not seen any documents to be able to answer this!!! Is it mandatory that a Needs Portrayal document be completed in a retrospective review and should a social worker have contributed to the completion of the DST? Also what is meant by a “CCG decision making panel” as mentioned in the National Framework, i.e. Have the CSU acted outside their authority as the “final decision” was made by the CSU MDT, not the CCG itself. Thank you for such a wonderful website.

  12. Pip 2 years ago

    Last year, after many years, I finally won part of a claim for retrospective continuing healthcare. The other part of the claim dating back to 2006 is still ongoing as due to rule changes, the periods of care are dealt with differently. It was a long, upsetting and very frustrating time, but after my dear mother died I continued her claim retrospectivelly. I’d been very active in my mother’s care and had copies of all the medical letters and reports and knew first hand the findings of experts whom my mother had consulted. When my late mother’s claim was finally heard only the final two years of her retrospective claim were allowed. I was quite upset with the findings of the nurse assessor which I did not feel were accurate or fair. I appealled using information from letters and extracts from medical reports written by consultants and other medical professionals who knew my late mother’s medical conditions, and had met and treated her, unlike the nurse assessor who had never met, examined or had any input into her care. I think the Appeal Panel must have preferred the findings/medical evidence of the medical experts as the appeal was successful. I’m not saying it’s easy. It’s not. It’s very difficult and heartbreaking at times. Use the names of the consultants and dates together with their views/opinions . These after all are the doctors who knew and treated their patient you loved one. Good luck. Also thank you to Angela Sherman who inspired me to continue.

  13. Jane Barnes 2 years ago

    I have just received the following letter from xxx Commissioning Support Unit (CSU) regarding a retrospective Claim for Mum going back to Sept 2012:

    16 february 2017

    Dear Mrs Barnes
    Re: CHC Retrospective Claim for period 2012-2016

    We are writing with regard to your request to retrospectively review a previously unassessed period of care relating to Mrs X.

    xxx Commissioning Support Unit manage all Continuing Health Care assessments on behalf of most of the Clinical Commissioning Groups (CCGs) in xxx.

    The CCG is currently not mandated to undertake these reviews and is awaiting national policy and formal guidance on the processing of retrospective claims for Previously Unassessed Periods of Care (PUPOCs) during the period 2012 -2016 and is therefore not carrying out any reviews pertaining to this, at this time. Consequently we are unable to progress the requested review for Mrs X.

    Should you wish to discuss this issue further please contact the CCG directly as detailed below:

    CCG Head of Clinical Commissioning

    Basically they are saying that, although the CCG are not allowed to do these reviews, they are not allowing the CSU to do any reviews, who are legally allowed. So in other words, if you fall under this CCG, and you have applied for or in the process of going through any Retrospective claim, forget it as they are not going to do it and are taking no further action. I am sure that this is in contravention of the act and probably totally illegal and I am going to follow up with the CCG, when I get an e mail address but any advise would be greatly appreciated.

    • Jane Barnes 2 years ago

      Follow up, I got fed up with their attitude, so I emailed my late mum’s MP, whom I know, and have now heard that his office has contacted Jeremy Hunt requesting information on the department’s current policy regarding this issue. May come to nought, but at least questions are being asked in the right places!

  14. Mel 2 years ago

    Some advice please.
    I got told before Christmas that Mum’s CHC Retrospective review was to be back dated 30 weeks, but not right back to when I requested.
    I know have a date for Local Dispute Resolution. I have been asked to attend which I will do. I am told, however, that the local social care team, although asked, never attend these meetings.
    Is this legal? Should they be there to represent my mother’s interests?
    I get the feeling we in this area are being hoodwinked.
    Maybe someone has some info regarding that please?

  15. karin tolson 2 years ago

    Confirmation came through. My husbands case will be backdated to Checklist +28 days. It has been a struggle
    Thanks to all the people who help run this site.

    • Chris-G 2 years ago

      Great news!

  16. Peter Couch 3 years ago

    I have been waiting nearly two years for a NHS Continuing Healthcare assessment. After her death, my late mother’s estate was kept waiting over a year.

  17. J Drury 3 years ago

    I am still waiting for a Continuing Healthcare (CHC) for my dad after a year. I have chased this on several occasions, the social services say it is the district nurses fault, the district nurses blame the social services. All these agencies blame each other, but in the middle of all this is a very poorly person who needs help. The care home have also chased on my behalf but here we are a year later and still no CHC assessment has been done. How many people does this happen to? I am sure social services are under pressure but truly feel that they will just spin things out until people die and then they’ll save money. It is a disgrace how they treat older vulnerable people.

    • Chris-G 3 years ago

      J Dury. Contact your CCG directly. This is ridiculous.
      Make sure that you are dealing with a manager that is an actual CCG employee and not one of their Commissioning Support Unit contractors. It is the CSU’s that appear to cause many of the problems in the CHC process. Discover who the CCG chair is and copy them in via the follow up e-mail that is wise to send to whomever you contact on the phone. All the best.

    • Angela Sherman 2 years ago

      J Drury – you may find the section about local authorities in this article helpful: http://caretobedifferent.co.uk/wits-end-nhs-continuing-healthcare/ Consider sending all care bills to them until they take proper responsibility for their part in the CHC assessment process.

  18. Christine Jenkins 3 years ago

    Last year My Mother was in and out of hospital for 8 months, returning to her home which was her wish again and again… Home care visits were in place but her health declined as a result of her COPD/Asthma condition resulting in sever pressure breakdown to her skin which was being managed by the community nursing team.
    Upon her last admission to hospital in September 2016 a Safeguarding alert was raised by the hospital due to her very poor condition 10 pressure care areas with some a grade 4…. then the battle began, she was allocated a social worker whose sole plan seemed to get her back home as he felt she did not meet the criteria for residential care, my mother had by now accepted that she could not manage at home. As a family we contested this as my Mother was now not eating or drinking due to poor swallowing ability was incontinent required 1 hourly turns, was non mobile and became very confused.
    Eventually it was agreed that my Mother required total Nursing care and I requested a CHC Assessment, the Assessment was completed and I was informed she did not meet the criteria and so I challenged this and met with the Assessor and I went through the assessment which I have to agree as recorded by others that my Mother’s condition had been damped down and I became very upset that this had happened.
    I later met with my Mother’s hospital doctor and explained the injustice of the whole system and said I am prepared to challenge this.
    One day later I was telephoned and advised that the consultant had fast tracked CHC funding and my family and I found a suitable Nursing home, where My Mother received amazing care, pain relief was comfortable with her family around her when she passed away only 5 days later.
    So I recommend you fight on and hope you are successful…..I have to agree this appears always, to be about money, funding and not the vulnerable person.

    • Angela Sherman 3 years ago

      Thanks for sharing your story, Christine.

  19. Susan Thorpe 3 years ago

    Graham, how do I find an independent consultant?

  20. Chris-G 3 years ago

    Regarding needs portrayal. They mention the making of a simple hot drink. If needs portrayal includes listing the entire process of each need, and how many times the need is met, and by how many staff, especially if the patient cannot don’t he task at all, then complexity in so called social care needs becomes more apparent……. It is all of the needs that should be assessed for complexity and/or intensity and/or unpredictability allied to any requirement for continuity of that care regardless of if in individual needs, a council could provide them. As such, care notes indicating a change of incontinence pads actually have a long and sometimes disruptive story behind them. To further exaggerate, Anyone can bandage a wound……. Ifnit needs to be done several times a week, then it is no longer a simple task that a council can be charged with undertaking……. Look at all needs in a similar way and no matter how long the report becomes, list them with close attention to the actual tasks required that is usually minimised in care notes with a simple comment. After all simply stating that a patient stayed for three days in intensive care for example, is informative but not instructive as to the needs that were met and care that was undertaken and the reaction of the patient is not mentioned at all.

  21. graham 3 years ago

    My late mother’s case for continuing care was started whilst she was in care . It was finally
    concluded three years after she died. The whole process against the NHS took six years. We engaged a solicitor to assist us, but the main turning point was in engaging an independent “social services” consultant. This person had worked on both sides of the fence, including on assessment/review panels. The evidence for care needs was clear, so also were the failures of the NHS in the way it conducted reviews. Their own documents highlighted an unbelievable level of railroading decisions through by people not qualified to do so as they clearly did not understand their own policy or the law. My advice, find an independent consultant, in my experience they are more useful and less expensive than solicitors.

  22. Stacey 3 years ago

    My mom had a stroke all the sudden in August. The hospital discharged her without notifying me and said it wouldn’t be that day so I could be there to help decide as the hospital case worker and I talked briefly 2 days prior because she didn’t have time at the moment she was going into a meeting but would contact me back about the release plan etc. As I am a single mother of 2, I wasn’t there at the hospital at the time when they up and had a ambulance bring her home after they stated that day she was not going to be released. Then boom hospice is in. I had no choices or chances and now with the stroke and my dad being permanently disabled since I was 10. 21 years now I was the only person in the right mind state to make any decisions or even setting up home care. Thank you once again one person can help guide or make a huge difference in ones families lives.

  23. karin tolson 3 years ago

    I am still fighting my local CHC who won’t backdate to the checklist, in stead they have made the case a retrospective case. They have apparently taken advice from NHS on this.
    Here is an extract from their letter.
    “Why was the date of eligibility not back dated to the date of the checklist?
    There was a delay between the date of the checklist and the date of the multidisciplinary team meting (Almost a year) The multidisciplinary team was able to make a decision regarding the ongoing eligibility of Mr xxx, however given the lapse in time could not guarantee that the needs were the same at the time of the checklist as they were at the time of the multidisciplinary team meeting. Whilst this delay was unacceptable, it was, in part caused by factors outside of the control of the Clinical Commissioning Group, including the lack of availability of a social worker, which is why there would not be an automatic back dating of eligibility to the date of the checklist.

    Why was your late husband’s case dealt with as a retrospective case?
    At the time when your late husband’s case was being reviewed the CCG had, due to a national initiative received over 4000 CHC applications etc. ”
    O K so they were overworked, I do not think that should be my problem.
    We did not have a social worker, I did not realise that we needed one, again that is now my problem.
    My husband was looked after by me at home with cares, the retro meeting was held when we were supported by hospice at home for four months,not a time when I had a lot of energy to fight the case.
    We did have a retro review a month before my husband died, I was not allowed at the meeting, I did not know the people on the panel, I was sent the Decision support tool,75 pages, it was full of errors and inaccuracies, I went through the whole thing and returned my comments , the panel did backdate 3 or 4 months, I do not understand why they choose 3/2 2015 to backdate to, the date does not stand out in any way.?
    I suppose my main question is can the checklist be ignored in the way described above.?
    I hope there is somebody out there who can tell me what I should do.
    Thank you Angela for being so supportive you are doing a very much needed job.

    • Chris-G 3 years ago

      If a checklist signalled similar needs to the subsequent CHC assessment made a disgusting year later then how could they argue that, in the unassessed interim, your loved one did not have those needs……. It is a perverse decision and perversity is grounds for a Judicial Review. Seek legal advice if the sums involved justify the expense that you might not get refunded even upon a successful court ruling.

    • Angela Sherman 3 years ago

      Thank you for your kind words, Karin. You’re right, none of this is of your making. If the CHC team can’t get the assessment process completed on time it’s their problem and they shoulder the blame. Their excuse about a social worker not being available sounds pretty feeble. The original Checklist cannot simply be ignored.

      • Clive Read 2 years ago

        I first wanted to say what a brilliant resource Care To Be Different has provided for people in similar circumstances, so thank you for that.

        I have a few brief questions I would be grateful for guidance on please.

        1. My late Mother was not offered a CHC Assessment prior to her discharge from hospital, due partly I suspect because of the undue haste exerted because they wanted the bed back. Is such as assessment prior to discharge a legal requirement or just a procedural one under the terms of the National Framework? The only assessment she had was a FNCC assessment following her admission to a nursing home.
        2 Is the National Framework on the statute books or is it basically for guidance?
        3. Does the National Framework override the Coughlan case or, because it is a stated legal case, does/should this take precedence?

        Thank you in advance.

        • Chris-G 2 years ago

          1. A CHC assessment upon discharge is required if it is considered necessary by the CCG. They tend to confabulate matters by insisting that (unassessed), the patient’s needs might be better assessed after the needs have settled within a nursing home or upon return home after discharge. This settling of symptoms and reduction of risk in the original diagnosis seems to me to imply that needs above those that a LA can provide, are being ignored. After all it is needs and not the settling of symptoms that are at issue.
          A checklist should have been done on discharge if care needs similar to those required in the hospital, were envisaged to be required after discharge.
          However some areas seem to delight in using a process called ‘Discharge to Assess’. Or as I call it….. ‘discharge to forget’. This entails getting the patient out of the bed and into some form of care and then assessing their needs later. The problem????? Who pays for care in the meantime? Who pays for care that has not yet been assessed as being within the remit of the council or the patient to provide?
          As for FNC…… This cannot be awarded without a full NHS CHC assessment being undertaken by a properly constituted multi disciplinary team. If such a situation has developed then the NHS has failed catastrophically.
          Complain that; as the rules have been broken, such costs cannot have been your loved one’s.
          2. National Framework is a guidebook. It often poorly explains the implementation of many bits of law that the assessors seem blind to or that they simply ignore law because the guidance is too loose and allows too much room for misinterpretation.
          3.The Coughlan and other cases are difficult to apply in CHC matters directly.
          This is because the assessors seem to believe that their application of the National Framework is the ‘Gold Standard’. These people are not lawyers and as such are likely instructed to ignore accusations of being non Coughlan compliant during assessments and appeals. One needs to go through the entire appeals process (in most cases) before access to a court is practical. Only really at that stage would, (in my opinion), it be that the Coughlan case might be understood and any link to your relatives needs be taken on board. However it is useful to make such comparisons throughout the appeals process, because the Independent Review Panel Chair is often a Barrister. They might well understand the logic of comparing needs and that if the council cannot possibly provide care to Ms. Coughlan, then it is unlikely that they could insist on self funding or actually provide the funding themselves (to be recharged) according to a patient’s means.
          Sorry if this overlong. But there is in fact so much more to comprehend in fact and in opinion and of course from direct experience.

        • Angela Sherman 2 years ago

          Thank you for your kind words about the website, Clive. To add to what Chris has said: 1) The Care Act requires people to be considered for CHC prior to discharge from hospital; 2) The National Framework is guidance, not law. 3) The law overrides guidance every time, and so the Coughlan case still stands.

  24. Peter Charles Couch 3 years ago

    My late mother was blind in one eye; virtually blind in her good eye; crippled with arthritis of the spine, hips and knees ; had both bones broken in her right leg ; Deep Vein Thrombosis with consequent swelling and immobility in her left leg ; heart failure ; lung failure ; kidney failure and severe behavioural problems. A normal residential home could not cope with her behaviour and the local council Social Services put her in a home specialising in patients with severe behavioural problems at a cost of £850 per week.

    Yet, according to a retrospective review carried out without legal representation of my then late mother’s estate, it was decided that my late mother did not qualify for NHS Continuing Healthcare!

    It seems to me that the retrospective review process is flawed for the simple reason that it depends on people who have a vested interest in defending the previous decision not to award NHS Continuing Healthcare.

    • Chris-G 3 years ago

      Is the money involved worth a court action and the expense of a Barrister? If so, get to it. I don’t see much in the way of the national framework that denies anyone the ability to use the courts having been denied again, especially when needs are so obvious. Needs when explained to a Judge would more likely be understood than accepted by NHS CHC staff who are under pressure to maintain budgets and so continue to be able to pay their mortgages.

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