NHS Continuing Healthcare – conflicts of interest

NHS Continuing Healthcare – conflicts of interest

NHS Continuing Healthcare - conflicts of interest

It will come as no surprise to many families to read that in NHS Continuing Healthcare conflicts of interest are commonplace.

Many things go wrong in the Continuing Healthcare assessment process, and we’ve listed some of the most frequent here:

  • Families are not told about Continuing Healthcare when a relative first needs care and so do not know that their relatives may need to be assessed for this funding.
  • There seems to be a lack of training on Continuing Healthcare for health and social care employees and assessors, including those working in hospitals. It means that many do not seem to understand the vital difference between healthcare and social care and how each is funded. Families, also, are often unaware of this difference and therefore do not always know when things are being done incorrectly and when a relative is being illegally means tested.
  • Families are frequently put off applying or pursuing Continuing Healthcare funding by some health and social care staff who say, “it’s not worth it” or “you won’t qualify” or “you have to be in a coma” or “paralysed” or “at end of life” – or other such nonsense. None of these things are true. This seems to be compounded by the ‘system’ making it as difficult as possible for people to pursue and secure the funding.
  • Assessments often happen behind a family’s back, i.e. the family is not told an assessment is taking place and therefore they can’t input evidence or monitor what’s going on. This goes hand in hand with poor quality care notes in many instances, which can render a person ineligible for funding even though a person clearly has significant care needs that warrant the provision of Continuing Healthcare. In such instances it is even more vital that the family is involved, to argue the case for their relative and to point out the flaws and inadequacies in the care notes and in the process being followed (or not followed) by assessors.

NHS Continuing Healthcare – conflicts of interest

There are some clear conflicts of interest that underpin these flaws. If you’re contacting your MP or other advocate to support you in your funding application or appeal, it’s worth highlighting the following points:

  • The Continuing Healthcare guidelines published by the Dept of Health stress the need for transparency and openness throughout the funding assessment and appeal process. However, the reports we receive from many families suggest that such transparency is sady lacking. Instead, other agendas seem to be at play (e.g. budgetary influences, protectionist and defensive attitudes, etc).
  • The people who conduct Continuing Healthcare assessments work for CCGs, who hold the purse strings. Continuing Healthcare assessors make a funding recommendation that goes to a CCG decision making panel; this panel is comprised of people who ultimately hold the purse strings.
  • A care home manager we spoke to told us that the CCG in her area is removing all Continuing Healthcare funding from people almost as routine, and making families fight to get it back. This is despite the NHS having a legal duty to fund people with a certain level of care needs. It would seem a cynical move, to say the least: it often comes at a time when the person needing care is dying; in addition, it takes energy, stamina and knowledge to pull together a detailed and coherent appeal case, and many families just aren’t in a position to do that.
  • Care homes, generally speaking, receive the most money from people who pay for their own care (so-called ‘self-funders’). It means there is often little incentive for a care home to help a family through the assessment process. Indeed, some families report care providers actively sabotaging funding cases.
  • We were involved in a Continuing Healthcare assessment where the assessor stated that the CCG gives training to all care homes in their area to show care home staff how to keep the kind of care notes needed to support a Continuing Healthcare funding application. This turned out to be untrue. Many care home staff who keep care notes have no idea about Continuing Healthcare and so cannot possibly be recording the things needed to support a case. Carers are also very busy. Families rely on care notes as the main form of evidence in funding assessments, and yet these care notes frequently let the family down.
  • Hospitals want to get people out and free up beds – and yet this may be before anyone has actioned a Continuing Healthcare assessment. It means vulnerable people are moved into long term care facilities and just told to pay the care fees; however these are care fees that the NHS may, in fact, have a legal duty to pay instead.

3 things need to happen to reduce these conflicts of interest:

  1. the whole process needs to be taken out of the hands of those with vested interests in the outcome
  2. all those involved need to be impartial
  3. care staff (and carers at home) need to be properly trained to understand the importance of every single thing they write in care notes

The greater the number of people who know about Continuing Healthcare the better – and families need to know how to argue their case in an assessment or appeal and know the potential pitfalls to watch out for.

If you’ve come across additional conflicts of interest in your own Continuing Healthcare case, please add a comment below.

90 Comments

  1. Michelle S 2 months ago

    I wonder if anyone can offer me some guidance. My Dad is currently in a nursing care home (specialise dementia wing) – he has vascular dementia, is severely cognitively impaired, hoisted between bed and chair, doubly incontinent, at high risk of pressure sores (although none as yet), high risk of aspiration/choking and so is fed thickened drinks and mashed food (stage 2), and he receives behavioural/anti-psychotic and anti-depressant drugs daily. He also has use of an inhaler as is often wheezy. We are fortunate enough to have been receiving Continuing Healthcare (CHC) for three years, but now we are being told that Dad’s needs have stabilised and that it is likely that the funding will be removed. We had a recent Multidisciplinary Team meeting (MDT), which had to be rescheduled so that we could attend as we weren’t even invited to the first one, and at the meeting was a rep from CCG, two social workers, Dad’s nursing lead and three members of the family. For two (Nutrition and Drugs) of the 12 x care domains, the CCG rep scored Dad lower than the family, social workers and nursing lead recommended….how can this be? We are so angry!! And now, two weeks on, it seems that the CCG rep is trying to get my Dad weaned off some of his medication, and is also trying to cancel my Dad’s forthcoming meeting with the SALT team to discuss his ongoing nutrition needs. And it seems that Dad’s GP is now ‘in on it, too!’ We believe that all this is being done so that ‘they’ succeed in removing Dad’s CHC. We are absolutely shattered, especially my Mum who has just come out of hospital after a nasty bout of pneumonia – brought on by all the stress and worry over Dad and his situation. Does anyone have any advice re next steps? Should we look to get a solicitor on-board? I don’t want to give up without a fight. I have purchased Angela’s Sherman’s book which is everso helpful, and I could do with some real-time tips, if anyone has any? Thanks!

  2. Paul 3 months ago

    We were in a similar position with my late father, Vascular dementia, needed 24 hour looking after, eventually got him into a nursing home, took £38,000 to cover costs after selling his home, he died there ! a remarkable capable man who worked hard all his life, never claimed a penny in benefits , still we were told he didn’t qualify for CHC funding!! after years of hitting our heads against a brick wall and getting nowhere, we employed a solicitor on a no win no fee basis, you guessed it! he won on our behalf we had all our dads fees refunded, sadly three years after he died of vascular dementia. The hassle Turmoil and pain we went through as a family was never compensated for, the NHS trust and decision makers who wasted our time over the years should be sacked as they did not do their job correctly, but no! they are still turning down valid claims. dont give up you may wish to go down the solicitors route yourself.

    • Chris-G 3 months ago

      Paul. Well done. And it shows up the ridiculous comment in the Framework regarding not needing a lawyer from the outset.

    • Author
      Angela Sherman 3 months ago

      Well done for persevering, Paul. The emotional toll on families is immense. I’m glad you’ve been able to succeed in the end.

  3. Eliza Gardiner 3 months ago

    Morning~ Had a Decision Support Tool (DST) yesterday on my self funding Mum, vascular dementia, no short term memory and long term going now. Doubly incontinent, cannot walk, hoist and wheelchair, terribly anxious, stays awake most of the night, high risk of falls and UTIs..
    DST was one person from the CCG and one person from the nursing home; all mum’s needs were minimised and airbrushed.
    Recommended no funding; basically she will be appearing on Strictly soon, she is so able.
    I said that I believed my Mum’s needs matched or exceeded Pam Coughlan’s but I was told that Pam wouldn’t get funding now.
    I will appeal, of course I will appeal but I am exhausted and this is what the NHS relies upon; worried, tired people in a sea of despair, watching loved ones disintegrate before their eyes and raping them of their assets (the result of long years of hard work).
    There is nothing transparent or fair about this system the judge, jury and prosecutor are one and the same and the budget has to be protected no matter the cost. It is shameful.

    • Val Moore 3 months ago

      I was in a similar position last year. Mum had first Decision Support Tool (DST) last July and assessed as illegible. After writing appeal letter, hundreds of emails and telephone conversations, finally had 2nd DST in Dec 16 and won.
      Had a Local Review Meeting re the July assessment, yesterday and now await that decision.
      I am not young (75) and It is exhausting .
      So keep at it Eliza. Good luck!

      Val

    • Chris-G 3 months ago

      The National Framework clearly states that Ms Coughlan’s needs are beyond the remit of a LA to provide……. For the assessors to have made that statement is a demonstration of their inability to make a recommendation. That is because if needs are beyond the LA to provide, then the person must be CHC funded. For the assessors to agree whilst wriggling out in such crass terms is tantamount to an agreement with what you said to them.

    • Chris-G 3 months ago

      By the way Eliza, if the two Assessors on the MDT were both nurses then it can not have been a multi disciplinary team. The law requires such and so does the Framework Guidance. Ergo it was an unlawful assessment and everything they recommend is going to be unlawful and so will any decision that remains to be made.

    • Author
      Angela Sherman 3 months ago

      Eliza – that wasn’t a valid multidisciplinary team (MDT) meeting, as there was no one from the local authority: http://caretobedifferent.co.uk/nhs-continuing-healthcare-assessments-2/

  4. Richard 3 months ago

    Ok this weeks fun and games; MIL in hospital 1 year now. Hospital sends in 2 consultants to claim she no longer has capacity – a couple of days after being notified she is suing them for the medical negligence (admitted by trust). We have a certificate from 9th jan and again today from independent Registered Mental Health Nurse (RMN) who assessed her as having capacity. They want to do a best interests hearing.

    advice please

    • Author
      Angela Sherman 3 months ago

      Richard – if they’re claiming your mother in law no longer has capacity, they must have the paperwork from the Mental Capacity Assessment to match. Also, mental capacity is about a specific decision that needs to be made – not a general assessment of a person’s cognitive ability: http://caretobedifferent.co.uk/mental-capacity-assessments/ Ask them what specific decision their mental capacity assessment was supposedly about.

  5. Martin Johnson 4 months ago

    Very interesting Richard as we are awaiting the IRP likely to be we are told in April. We also had professional help in comparing my mother’s condition in comparison to Pamela Coughlan and in each area my mother was equal to or worse than Coughlan. Will be interesting to hear the outcome of your case! Regards Martin

  6. Janet 4 months ago

    Last year had been the worse of my life.My husband was told he had dementia .In January of last year I had a major operation on my left lung and this was done at Guys London. MAny x rays and they found a shadow this was explained I had a virus could have been TB, measles, or hooping cough which stayed in my lungs since childhood.After coming home my husband then became violent with me so I asked him to give me a break and go into respite for two weeks.He then tried to slash his wrist and the home staff were not equipped to look after him so he went to a home for dementia,he has now been there a year.My husband has been self funding all last year .I tried to get CHC but was told I would not get it.The social did a financial assessment before this.I was then summoned to their office and took all bank details and was told that I could not access our joint account.I could not believe this.There have been three special needs assents ,I went along to two but refused the third one as I am so worn out.The dols team agree ,the two daughters agree but the social still wanted to send him home.I have told them so many times that I can’t cope anymore ,why don’t they listen.Now the case is going to court of protection.I have had a 26 years of marriage to a vey difficult person always wanting to argue always telling me I was mad .Always clinging to me etc. Now I have just read the last meeting comments and saw with amasment that when my husbands marriage broke up in 1983 he went into hospital and the phyc wrote to his doctor telling him he had Behaviour personality disorder. I never new this but this explains all the hell I have had to put up with.If only someone could have told me I might have been able to cope better..Just so hope this year will be better.Also I feel that the money side of things is not explained well .I had another financial assessment before Xmas and now the council have agreed to pay for his care with a contribution from him .Half of the bank account was disregarded so does that mean that I can use the other half ? Does anyone have the answer.

    • Author
      Angela Sherman 3 months ago

      Janet – no one can tell you that a person ‘won’t get’ CHC until the assessment process has been carried out. The local authority were wrong to do a financial assessment as the first step. In addition, you should not be expected to care for someone just because you are a relative. You may want to raise a safeguarding issue with the local authority, as it sounds as though it is not safe or appropriate for your husband to come home. This may also help regarding getting the CHC process started: http://caretobedifferent.co.uk/getting-the-nhs-continuing-healthcare-assessment-process-started/

  7. Richard 4 months ago

    Well appeal panel panel held ! Sitting was local authority (LA) Head of Service for Complex and Inclusion, a CCG doctor and an independent chair ex LA social worker CCG medical advisor (who spent most of her time not giving medical explanation but saying we’re not here to discuss that.)

    We challenged everything from all domains despite the chair being “keen” to finish by 5 and the nurse assessor having to leave by 4.30. We took the view that was their problem and if need be they would have to reconvene. as it happened we got through it in three hours.

    On our side myself (SIL) my wife (D) solicitor, family friend nurse and Solicitor, and RMN acting as an advisor to us.
    CCG manager nearly fell of her seat when shown the e mail from the LA Head of Social care (the panel members boss) stating that MIL in the LA’s opinion had a primary health need. She was subsequently forced by the RMN to admit that because they had agreed Funded Nursing Care (FNC) that they felt she had a medical need. She tried to argue FNC was distinct from Continuing Healthcare (CHC) which of course it is but neither is granted if your needs are only social.
    We summarised by explaining the Coughlan Case the chair had seen the video of Pam Coughlan (PC) we had included in the appeal pack . At this point the CCG manager tried to explain to panel that the old Coughlan case had been replaced by the framework! So nearly burst out laughing.
    We then ran through Pamela Coughlan’s needs and laid them side by side with MIL all of which MIL is demonstrably equal or greater than we then ran on to the many co morbidities that she has in excess of PC., explaining the DST is no more or less than a tool to compare the range of presenting signs eg how else do you compare a wheelchair bound person with an active adult with dementia? Finishing off stating the Coughlan case as the law which panel must follow care needs equal to or greater than PC must be met in full by the NHS as Lord Justice Woolf went on to say almost everyone who needs to be in a nursing home are likely to be eligible.
    We now await the deliberations of the great and the good. Not holding our breath.

    • Author
      Angela Sherman 4 months ago

      Richard – the suitability of the Chair in that position sounds questionable!

      • Richard 3 months ago

        We said as much prior to the hearing and the CCG carried in we suggested a barrister that got shot down by the ccg pretty quickly!
        Have put a Freedom Of Information request (FOI) in to see how many appeals he has chaired etc would be interesting to see a definition of independent chair

        • Chris-G 3 months ago

          Standing Rules Regulations and the National Framework Practice Guidance (at the back) will give you an idea of who can be an Independent Review Panel (IRP) chair. For some local appeal panel hogwash…

  8. coodie 4 months ago

    I am wondering whether if eligibility is denied at Independent Review Panel (IRP), it is worth persuing to the Health Ombudsman if the CCG can then refuse the recommendation and simply issue a county court claim form for retrospective fees instead. In fact on the Ombudsman website general page it seems to imply that if you can seek redress legally then you should do so, suggesting that if it is a financial matter and not an ongoing (retrospective care) matter, then this is the best course of action. Would we be right in bypassing this additional route of arbitration? We intend to represent ourselves should the case be defended.

    • Richard 4 months ago

      courts will generally say have all dispute resolution procedures been exhausted b4 agreeing to hear the case at least thats my understanding

      • Chris-G 3 months ago

        Richard, often the trouble is that the process fails but the CCG refuses to accept the facts and ignores the procedural failings during appeals. To keep appealing against refusal to fund is perhaps not the same as making a complaint against procedural failure. It doubles the workload and is a weapon used to discourage claimants. Appeal against refusals but complain about failure of process. Once reply to complaint is on hand then why is court out of the question?

  9. Andrew 5 months ago

    A few days ago Her Majesty’s Government published the draft Public Services Ombudsman Bill (https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/575922/draft_public_service_ombudsman_bill_print_version_december_2016.pdf) for consultation.

    This draft bill is intended to replace the current Parliamentary & Health Service Ombudsman & Local Government Ombudsman (which organisations consider complaints from the public about maladministration/poor service within public bodies such as local councils and the NHS) with a single organisation, the Public Services Ombudsman.

    I have no issue with merging the two organisations if that will create efficiency and consequent cost savings. However, as far as consumers being able to enforce their rights speedily and cost effectively, it appears absolutely nothing will change.

    If the Public Services Ombudsman Bill becomes law “as is”, it will decide the final manner in which many consumer complaints concerning the refusal of NHS Continuing Healthcare are dealt with. As you know, the current system for determining such matters is far from perfect at the moment. However, for HM Government to perpetuate one of the worst defects in the current system is illogical.

    As currently drafted the Public Service Ombudsman Bill places the same obstacles in the way of members of the public to obtain quick (relatively) and cheap (relatively) way of putting things right where maladministration or poor service has happened (such as where NHS Continuing Healthcare has been refused contrary to the law and the DoH National Framework).

    For example, draft section 14(8) of the Public Service Ombudsman Bill says if the Ombudsman makes a recommendation to a body that has been complained about, that body may ignore the recommendation!

    The draft Public Service Ombudsman Bill also says (see draft section 15) that if the Public Service Ombudsman discovers that the body complained about persists in not adopting and following the recommendations issued by the new Ombudsman, then the Ombudsman may issue a “special statement” be published before Parliament, naming and shaming the body concerned.

    These provisions simply repeat what the current Parliamentary & Health Service Ombudsman and Local Government Ombudsman are entitled to do in terms of remedying an injustice or hardship. How does that help a member of the public who, where NHS Continuing Healthcare has been refused incorrectly, could have been waiting 2-7 years or more to obtain justice?

    Justice delayed is justice denied. Why are the same failings in the current ombudsman system being repeated in the draft Bill? How does that help consumers?

    If the Legal Services Ombudsman has the power to order a provider of legal services to put right poor legal services provided to a consumer, and the Legal Services Ombudsman’s orders can be enforced in court, why can’t identical provisions be inserted into the Public Services Ombudsman Bill?

    • Author
      Angela Sherman 4 months ago

      That’s a good question, Andrew.

  10. Richard 5 months ago

    This from the CCG too re appeal panel etc

    Dear Mr and Mrs F,

    Thank you for your email of 30 November 2016, which my colleague xxx has shared with me as the responsible Director.

    I appreciate that you would have liked the appeal panel to be convened before Christmas but, as confirmed in xxx’s previous email, the 9th January 2017 was the earliest date on which panel members were available, given their other commitments. The timescales conform to NHS England guidelines for convening local appeals panels.

    I note your views in relation to the panel members. Of course, beyond the local appeal, you would have a further right of appeal to NHS England and the NHS England panel would comprise individuals from areas not connected to xxx. However, all attempts at local resolution should be exhausted before NHS England becomes involved. The CCG is satisfied that, with the exception of J, none of the individuals has had any prior involvement in the case and therefore all are appropriate panel members. I have therefore decided to reconstitute the Panel without J. I am in the process of finding a replacement but this may result in the hearing taking place on a date later than the 9th January 2017. We will let you know as soon as a date is confirmed.

    As reiterated in previous correspondence, the LA has not raised any concerns regarding the CHC determination of ineligibility. I am aware that the care package at home that you seek would exceed their permitted funding limits. This decision is the local authority’s alone and is entirely unrelated to CHC or to the Coughlan judgment.

    In terms of the procedural matters you raise, the appeal panel members would be, with the exception of J, as previously advised. A note taker and a clinical advisor (to both yourselves and the panel) would also be present. The panel proceedings will be recorded. The CHC Manager and Nurse Assessor will attend and outline the assessment completed and timeline of events (eg: CHC assessment date, first line appeal meeting etc.) You will also be invited to attend to outline the key issues of your appeal.

    You will receive the same information as the panel members including copies of all assessments, care notes and correspondence between us (including the information you have previously supplied about the Coughlan judgment/ADASS report). After the panel members have had the opportunity to discuss the case with both the CHC Manager and yourselves, everyone other than the panel members, the note taker and the clinical adviser will be asked to leave the room, in order that the panel may deliberate and reach their decision.

    Regarding the issue of legal proceedings, your position is noted although, as Mrs H has been identified as having capacity, it is unclear how deprivation of liberty can apply in this instance.

    Yours sincerely,

  11. Richard 5 months ago

    If as many of us as possible could ask their CCG the following and post answers on here we could get some valuable evidence about how the system is failing;

    FOI Request

    1. How many CHC applications have you processed in the last 5 years?

    2. How many CHC applications have been fully funded in the last 5 years?

    3. How many appeals under the CHC process have been heard in the last five years?

    4. How many have been successfully upheld?

    5. What is the largest retrospective payment that the CCG has made?

    6. How many retrospective payments have the CCG made?

    7. How much per annum is the largest CHC poc funded by the CCG?

    8. In the last five years how many times have social workers in this area been invited to MDT/CHC assessments?

    9. In the last five years how many times have social workers in this area invited to MDT/CHC assessments actually attended?

    10. Under the Fast Track procedure how many applications have been submitted?

    11. Under the Fast Track procedure how many applications have been paid for?

    12. Under the Fast Track procedure how many applications are still in payment after 12 weeks?

    13. How many applicants are still alive 12 weeks after a Fast Track assessment has been submitted?

  12. Chris-G 5 months ago

    If the person is ill, no matter the person’s wealth, never ever simply pay a nursing home until you have involved the NHS and had a checklist or full CHC assessment done. Then whilst appealing the NHS’s decision, do nothing further without involving the Council. (Claim ignorance of the system and make it a safeguarding issue on the grounds that you don’t know enough to properly assist.) Get them to carry out a financial assessment. Then get them if possible to assist you with making the Nursing Home placement. Then refuse to reimburse the council if they become financially involved or pay the Nursing Home until you get what you want. Court cases or ejection from the home would be unlikely to succeed whilst the CHC appeals process is underway. It could take years and if everyone did it the entire system would collapse within weeks.

  13. Richard 5 months ago

    Morning All,
    had notification of formal appeal date January. Is there any formal guidance on the appeals process structure who should sit etc. thanks in advance

  14. Gary 5 months ago

    I couldn’t find my original post to update on my mothers story so far. In summary we were self funding until she reached the £23k threshold, we then troubled for the next 3 years for a financial assesmemt for contributing costs , we ended up with a bill for £40k, I appealed this and it was reduced to £22.5k. In the mean time my mother was awarded Continuing Healthcare (CHC). I paid the £22.5k bill and 7 days later her funding was stopped following a 3 month Decision Support Tool review. I appealed and eventually got to attend a resolution meeting, armed with copious notes and evidence. I was very confident of the outcome – four months later I got a two page reply confirming that the original outcome was upheld. I am now in the process of a NHS England appeal. However, very exhausted and down beat. My mothers capital is now totally exhausted £80k, due to delays in assesmemt X and arrears. We now as of tomorrow pay a weekly contribution of £250 per week which leaves her £24.90. She needs new teeth which we cannot fund, and to top it off I have a bill for £3.5k for the last 15 weeks arrears since the decision – I give up !

    • Chris-G 5 months ago

      Gary, perhaps I misunderstand but if the council was involved, the full self payment should have ceased at £23,500 in savings. Then something like £2.00 per £500.00 over £14,300 could be added to any income or pension that the LA tries to take. This would continue until £14,300 is left in the bank. At this point, the LA should have taken over paying in addition to your loved one’s contributions. They should still get the weekly disregard and get to keep the fourteen grand. Have you questioned the LA as to why she is skint?

  15. Richard 6 months ago
    • Chris-G 5 months ago

      It was stated. “I have been made aware that [the care manager] is not a qualified social worker. He is a very experienced manager. The local authority refers to him as a social worker. He is selected by the local authority to support the continuing healthcare nurses in the [application] process.” That being the case, he was not a person described within the framework as eligible to form a council’s part of a multidisciplinary team (MDT)….. The entire assessment was unlawful and as such so was everything that followed. A NHS nurse and a nursing home nurse share the same qualifications and cannot form a MDT lawfully. It should be borne in mind that until a lawful assessment is done, anyone released from hospital without perhaps a checklist should be funded until the process lawfully excludes that need. The system swings both ways.
      Another part of the article describes a Baroness describing patient’s condition rather than their needs……

  16. Collin Goodhew 6 months ago

    We are due shortly to have an appeal meeting regarding retrospective CHC funding on behalf of my mother who sadly died in 2013 we made the claim before the dead line in 2012 and it has taken 4 years for the NHS to come to a decision which is that she did not qualify, thus the appeal hearing which has taken another year. In the original deadline documentation the deadline period stated that if the claimant was paying from 2004 to 2011 the dead line was 2012 which we met. However my wife who lodged the claim assumed this to mean we could claim back as far as 2004 but in reading more carefully there is no clear start date for the claim. My mother was admitted to a Care Home by Social Services in 2002 so does anybody know if we can go back this far.

    • Author
      Angela Sherman 6 months ago

      Collin – the deadlines you’re referring to cover periods of care back to 2004. However, if like many people you were never told about Continuing Healthcare back in 2002, you could potentially argue that the authorities were negligent in their duty in that respect. It may be a tough argument to win, though (even with right on your side) but it may nevertheless be worth trying.

  17. Jill Scholl 6 months ago

    I agree with the three areas described. I have an advocate and, although the process is taking much longer than I anticipated, and this is due to the CCG not adhering to any times lines, I could not have ‘taken on’ the establishment without help. We are at the ratification stage. Essentially the CCG has not agreed with my advocates’ arguments that my stepmother is entitled to funding, they have not changed any of their scores to suggest she is eligible, in spite of the arguments raised by my advocate, instead they have agreed to put our comments on the form and ‘allowed’ us through to the next stage. My advocate is very experienced in this process, and clearly knew when my stepmother’s health needs were not being represented correctly. The team from the CCG said they had not had a member of the family or an advocate before, they had made it very difficult for us to come, they were not well pleased, and made this very clear.
    I would like to add that I was also aware that the member of staff that ‘managed’ the ward and had attended the two meetings so far, was in awe of the leader of the CCG. The ward had kept excellent records, many things I would have liked to have known about earlier, and my advocate was able to quote from pages of entries that supported our case. In the first assessment the CCG and the employee had completed it before inviting me and my advocate to the meeting. We had to talk through what they had already decided. The meeting was cut short to one hour. We effectively lost, but were ‘allowed’ to go thought to the next stage. After a noble attempt on the part of the employee from the care home to stay neutral at the beginning of the DS assessment she was stopped from offering her opinions to any differences of ratings.
    My advocate will have sight of the information that will be forwarded for ratification by the CCG, he will be forwarding our case. I am told there is unlikely to be a change in the decision at this stage, but it paves the way to the appeal process which should consist of a panel that has been trained to follow guidelines and evidence. I have paid for this process, and would agree with an earlier comment, that why should we have to pay for professional assistance when NHS employees are obstructing our rights because they have been given a different agenda.
    Obstacles –
    Hospital lack of information about Continuing Care
    Care Home lack of information about Continuing Care
    Care home saying that client would not be eligible
    Care home sending their own negative assessment to CCG without inviting involvement of family
    Hostility and pre-judgement from CCG team
    Misinformation about not allowing me to come to assessment from CCG
    Misinformation about not allowing me to bring an advocate that could speak on my behalf
    Carrying out first hour of assessment with CCG, completing the form with care home employee, without inviting me or my advocate to join, and then dismissing our differences re scoring
    I guess the list will continue…..Jill

    • Author
      Angela Sherman 6 months ago

      Jill – thanks very much for your comment. The obstacles you’ve encountered are sadly all too common – and yet of course wholly unacceptable. I’m sure many families can relate to your experience.

  18. Colleen Sambrook 6 months ago

    My mother in law was never assessed for continuing health care whilst she was alive because we were not aware that such funding was available.She had dementia, was violent on occasions and as her condition worsened refused to eat or drink and was doubly incontinent. We have been fighting now for more than three years having been refused twice, the second time after an appeal. We have now resorted to handing over the case to a specialised firm of solicitors who have agreed to take the case on a no win no fee basis. I fear that our search for justice could drag on another three years as the CCG has no interest in paying out even if our claim is substantiated.

    • june tall 5 months ago

      Can I ask which firm of solicitors you are using and what their fees will be if they succeed.
      . I am in a very similar situation, the whole appeal process is mentally exhausting and I am running out of steam but want to persevere with my Mother’s case, or rather for someone to persevere with it.

  19. Siobhan 6 months ago

    I completely agree with all the comments made above. We have applied and been declined Continuing Healthcare twice so I am now appealing. My mother has had vascular dementia for 10 years now . It’s all very upsetting so to have the stress of the finances on top of it all is sometimes overwhelming. I feel the assessors attend the meetings with absolutely no intention of giving the go-ahead to the funding. I’m going to persevere in the hope that we win in the end!

  20. Michelle Fraser 6 months ago

    This is an appalling scandal sweeping the country – making life miserable for frail elderly people and their families. As previously pointed out, care homes make most of their profit from self-funders and therefore, have no incentive to support CHC. The Care To Be Different site here is the best there is – can we petition the government – or have you already done that? If a petition receives more than 100,000 signatures, they have to debate it. Any thoughts?

    • Vivien 6 months ago

      Hello Michelle, I would definitely actively support this idea. I imagine the requirement of 100 000 signatures would easily be met; the power of social media could be a force for good in this case. Recently, my mothers care home increased her weekly room and care fee by exactly the amount of increase of FNC awarded this April! I am not sure this is legal. Worse, all the posts I have just read demonstrate the terrible situation others are in – so many saying they are at their wits end.

      Yes, let’s initiate a petition. I will do some research over the weekend and post here my findings. Perhaps others reading this can also post their support in this discussion.

      • Shirley L 6 months ago

        I am definitely with you Vivien. Something really needs to be done .

        • Vivien 6 months ago

          It seems quite straightforward to initiate a petition to parliament; here is a link
          https://www.gov.uk/petition-government

          I think the problem would be that as there are so very many sub issues surrounding the assessment and qualification for continuing healthcare, it might be difficult to come up with a single, succinct topic for debate. I do not have extensive knowledge or experience of the system, so maybe Angela Sherman or perhaps a specialised advocate one of you knows could take the lead…

    • Val Moore 6 months ago

      I would certainly support a petition. It is a disgrace what is happening with CCG in effect blocking any application for CHC.
      Meanwhile I am persevering with the appeal.
      On another note…what do CCG define as nursing care needs? Anyone explain? I have read and read and cannot find a definative answer really.

    • Author
      Angela Sherman 6 months ago

      Thank you for your kind words about the website, Michelle.

    • Margaret Potter 6 months ago

      Michelle, Vivien, Val…any information on a petition? I would support it and help in any way I can.

      • Vivien 5 months ago

        Hello Margaret,

        Please see my post above together with a link to the gov.uk petition site.
        Vivien.

      • june tall 5 months ago

        I too would sign a petition
        June

        • Val Moore 5 months ago

          Any petition needs to have impact and i think it is difficult with the subject of CHC not known by many people.
          Do we want the Checklist and DST rewritten so they’re more effective in measuring health and social care needs? Easier to understand by us the relatives. I can contact 38 degrees and apparently staff are there to help.
          Regards

    • Author
      Angela Sherman 5 months ago

      There have been several Continuing Healthcare petitions over the years, each one with a slightly different angle, including:

      https://petition.parliament.uk/archived/petitions/44333

      https://you.38degrees.org.uk/petitions/investigation-into-the-malpractices-of-nhs-continuing-care

      https://you.38degrees.org.uk/petitions/free-health-care-for-elderly-people-in-nursing-homes

      (These are just some of the petitions – not all.)

      Here at Care To Be Different we are always happy to publicise good, relevant petitions that have a clear message. If you start one, let us know. We can publicise it through our mailing list and social media.

  21. Elaine 6 months ago

    We have recently been declined as during an assessment my Uncle did not “score” enough points, despite suffering from severe vascular dementia, poor mobility, diabetes and full incontinence. He has been stuck in hospital for some 5 weeks now and is often aggressive and offensive to staff who struggle to deal with his behaviour. We have been declined by 3 nursing homes due to his problems. It beggars the question just how needy does an individual need to be to be “scored” high enough to warrant continuing health care funding? We are at our wits end.

    • Author
      Angela Sherman 6 months ago
    • Richard 3 months ago

      It is a decision support tool Not a decision making tool DOH briefing notes actually set this out DST does not replace professional judgement
      https://www.youtube.com/watch?v=HrpFLLwGqhs is well worth a look

      • Chris-G 3 months ago

        Doh briefing notes are not law or even part of the framework. A CCG and no one else, is obliged under a duty in law to use the completed DST and recommendation in making their actual decision. Professional judgement should be based on all available evidence and expertise and knowledge of the patient’s needs. Many assessors and even their superiors don’t seem to know much associated law so how can they apply professional judgment?

        • Richard 3 months ago

          Chris yes they must use the (flawed) DST but the DOH clearly never intended it to be used as a decision making tool in a mechanical way as we all know pam coughlan would score v low across the domains but by definition is the embodiment of the standard for CHC. So many assessors tot up the points and if you dont pass go…..

  22. Robert 6 months ago

    I simply comment in agreement with all the above issues. My mother has been in care now with severe Alzheimers and dementia for 8 long years.After caring for her myself for several years before that it was taking a heavy toll on me and a geriatrician advised that I put mother into respite care and she never came home- We sold the family home and care costs after 8 years so far are now approaching £200K if not more. Now aged 96 she requires 24 /7 care and assistance for personal care and feeding. She also has to a ‘deprivation of liberty’ legal assessment made annually by Social Services via the Council and a retired psychiatrist confirms each year the extent of my mothers illness. Despite this I have had at least three goes at trying to get NHS Continuing care. The last one was done and I have heard nothing and I have run out of steam to be honest. Care fees increase year on year and in the last home where my mother lived for 4 years they increased the fees by £300 a month in two hits £200 in April and £100 in October so I moved her in protest. As one of your contributors says the sickening thing is that sat all around my mother were people who were paying nothing or had ‘avoided’ doing so legally or otherwise. My father worked until he was 70 to keep the modest bungalow in which they had lived for 60 years and when I took over all the work as they both became frail, housework, painting, gardening being told that it would all be yours one day. Now myself 65 with a heart problem I am 8 years into visiting the mother I love dearly who no longer knows who I am and can sometimes be very unkind. This in itself wears you down but the unfairness is what sticks in your throat even more so when I spotted the additional £29 per month precept on MY Council Tax bill for adult Social Care. You could not make it up.Alzheimer’s is a disease so why is it the only one not paid for under the NHS. Families suffer enough emotionally through this awful journey and the additional financial loss deprives families of a deserved inheritance of what their relatives have worked for all their lives and their parents before them.

    • Val Moore 6 months ago

      Hi Robert. i have access to Mums file and ask for printout of her daily records. I am currently going through and noting any behaviour and incidents myself as the assessor did not have adequate or accurate records. I have compared dates of incidents and accident (she often falls and injures herself) Mum also does not know me, has hallucinations and often hits out and saays the most awful thing to me. It is hard I know but I will persevere. As you say it is not right that other deseases receive NHS care free.

    • Shirley L 6 months ago

      Hi Robert
      I echo your sentiments entirely. We had a very similar situation with our Mum who we looked after for 4 years until it was not longer safe to keep her at home. She spent 5 years in a care home with long term medical conditions (Alzheimers , heart failure , atrial fibrillation and osteoporosis) She was doubly incontinent had very poor mobility , did not recognise the need to eat or drink and due to warfarin medication required continuous health intervention in the form of services via the anti coagulant clinic at the local hospital. She was of course only deemed as having social needs !! We have just been to IRP panel who have agreed with the CCG that Mum was not eligible for funding . This did not come as too much of a surprise as IRP meetings are arranged by the NHS which says it all !!! I am now taking our case to the Ombudsman and it remains to be seen how that pans out. I agree entirely that no one seems to take into account the emotional strain on families not only having to deal with stress of watching the suffering of loved ones but having to be dragged through the continuing healthcare funding process? Throughout the entire process the CCG has appeared to have had one aim only, which is to deny funding to an applicant who was clearly entitled. They have even resorted to saying that domain weightings were lowered ( which is completely against the framework guidelines ) because I was intimidating at the initial MDT meeting because I dared to raise the point that they were not assessing Mum in line with the framework. If the process was carried out fairly and guidelines adhered to there would have been no doubt that Mum would have been eligible for funding, however there has been so much maladministration swept under the carpet in the IRP report in order to deny her . Mum spent £211000.00 on her care , is this fair ??? And as you so correctly point out Robert , we are now also being asked to contribute to social care via our council tax. It really beggars belief !!!!

  23. Val Moore 6 months ago

    I am currently appealling against an ineligibility descision for my mother. Initially the care home manager said “she will get it” but now saying she won’t. I do believe this change of opinion to be all about mum being self funding. Manager also said that mum is only social care. She has alzheimers and vascular dementia, is deemed as at high risk of falls, been hospitalised due to falls, is verbally and physically aggressive to other residents, carers, staff and family.
    Besides that I have sent CCG a letter of appeal stating the flawed assessment due to inadequate recordings of the staff, I was not invited to assessment, though I did manage to get there as the staff rang me up and told me it was happening there and then! I have reminded the CCG numerous times that I am still waiting for a new assessment, to be told, by email, that it is in hand. This second attempt to obtain CHC started in March 2016, ineligible assessment in July and still waiting for something to happen. The first Checklist, Dec 2015, was declined by CCG as wrong forms used. I am at my wit’s end.

    • Author
      Angela Sherman 6 months ago

      Val – see my reply to Janet and to J Drury above. Also, the CCG should have involved you fully in the process. This may help you as well: http://caretobedifferent.co.uk/wits-end-nhs-continuing-healthcare/

      • val moore 6 months ago

        Thanks Angela, have looked at this link and is very helpful. I will give CCG one more chance to ‘do something’ then I will be writing a few letters starting g with my MP who happens to be a practicing GP.
        This site is so helpful, I recommend to everyone in need.

        • Author
          Angela Sherman 6 months ago

          Thanks for your kind feedback, Val.

        • Val Moore 5 months ago

          I did write to both CCG and my MP on the same day. I have a reply saying he has made representations on my behalf to Philip Dunne MP, Minister for Health, so I await. Surprisingly had no response from CCG…..

          • Val 5 months ago

            We now have a date for 2nd MDT Assessment!

    • Val 4 months ago

      Well had 2nd Multidisciplinary Team (MDT) on 15 Dec, still waiting result. Mum is shouting, swearing, hitting, spitting, scratching, throwing things at everyone including visitors, doubly incontinent, not sleeping, anxious and depressed. Her behaviour is unpredictable and unpleasant.

      However I also received a date for a meeting, 30 Jan 17, regards my appeal letter to ineligible assessment done in Jul 16 for CHC. What a dilemma! Should I cancel 30 Jan or should I wait till after result of 2nd MDT?

      • Val 4 months ago

        And numerous falls, last on Jan 1 requiring a stay in hospital and stitches.

      • Val 3 months ago

        At last, Success! Mum is eligible for Continuing Healthcare. Taken a lot of time a lot of work lot of discussion. Now I dont have to have the IRS on 30 Jan to the first Decision Support Tool meeting…phew!

  24. Gary 6 months ago

    Hi J Drury,

    Refuse to pay any money out until the relevant individuals have first screened your father for CHC funding. You should not have to pay anything until it is decided if your father qualifies for CHC funding or not. I would take it that your Council have done a “means-test” with your father for them to start the care home charging for his care? Therefore, if your father requires 24 hour care then potentially the Council are acting above their given legal limit.

    • Chris-G 5 months ago

      Hi both, it is three years since my FiL lost his Continuing Healthcare (CHC) funding and we have not paid a penny on his behalf. (We have done the same for my mother too). The council’s so called ‘special projects team’ contacted us with further and very formal looking legal threats about two years ago. We simply told them to take it to court…….Oh and don’t forget to invite the NHS because we will allege that it is they that owe the money and not Mr XXX. We also insisted that we would have to re-enact the entire CHC assessment process before the Judge so that the matter of who actually should be paying could be resolved…….. We asked them to understand that they would likely be found to have invoiced for care that was beyond their legal remit to provide. Apart from the regular monthly bills for care we have not been contacted since with a single threat. They do not dare run the risk of another Coughlan style court case. It is also the case that any decision in this environment would be open to everyone else to use in their own cases, which is very much more dangerous to them all, than the so called ‘patient centred’ approach to the appeals procedure that currently exists and in such a form as to prevent others using the decisions to assist their own cases.

  25. Janet spence 6 months ago

    I have been waiting since Jan 2016 for a Continuing Healthcare assessment. I managed to get my local MP involved and hey presto it going to happen on Monday. I have been told my husband will not get it. I do not understand this – he has dementia and all sort of problems. This is a nightmere to go through.

    • Martin 6 months ago

      You cannot be told your father will not get CHC without a checklist process and then full assessment being carried out. Whoever told you that your father will not receive it is incorrect until the process is complete.

    • Author
      Angela Sherman 6 months ago

      Janet – no one can say whether you husband will or won’t get the funding until the assessment process has been carried out, as Martin says. Sadly, many health and social care people seem to think it’s OK to ‘predict’ the outcome in advance – possibly out of ignorance or possibly to try to put the family off. Challenge everything you disagree with in the way things are done and in any subsequent funding decision. You may also find some of the links in this article helpful: http://caretobedifferent.co.uk/nhs-continuing-healthcare-funding-28-useful-links/

    • H G 5 months ago

      At a time when families are coping with the misery of their loved one’s deteriorating condition, they are also having to fight the NHS for funding, when the goalposts are being moved according to what appears to be expedience and a severe lack of fairness. This is just cruel and a million miles away from what the NHS was created for. It is also an area that ordinary people know nothing about until they are thrown into it. I know that what I have written will be self evident to those in the midst of it. The Sunday Times has been writing about it in their money section recently. It really needs placing firmly on the national agenda. The problem is not going to go away!

  26. wish to remain anon 6 months ago

    After 2-3 years of being denied continuing healthcare for my father suffering with Dementia my family were at their wits ends and getting nowhere. I was adamant he was entitled to full funding. We, as a last resort, employed a solicitor fluent in continuing healthcare claims, who took on my father’s case. It took another 2-3 years before the local NHS had to admit they denied my father his entitlement to continuing healthcare and we recieved a refund of costs of the nursing home. Sadly my father passed away before this, however my question is this: if through neglect to fund my father we as a family lost a portion of his fees as commission to the firm of solicitors, is there an argument in law that states if we should be entitled to all associated costs i.e. having to pay a solicitor to pursue this claim etc. Your thoughts please.

  27. Glynis Evans 6 months ago

    The person leading the assessment both times in my mother in law’s case were members of the CCG. The other members of the panel (Social Worker & Mental Health case worker) majority of the time agreed with what we were saying, but the lead assessor argued every point with us. The nurse at the care home who attended the meeting gave conflicting accounts with what was in care home notes with regards to relative being compliant, but the head assessor passed this off by saying that the patient has the right to refuse care & food if they want to – although this goes completely against her normal state of mind. I think sometimes they actively train them in how to counteract arguments !

  28. J Drury 6 months ago

    This article is very interesting. I have chased my local Social Services office to ask if a Continuing Healthcare Assessment has been done for my father. Still I have received no reply. I have chased three times with no one ringing me back. My dad has been in a care home since March and as he is “self funding” i.e. he has a house, we have to pay the whole costs of the care home fees. We haven’t got Power of Attorney so we have had to get a solicitor and pay £2,000 from my father’s assets to pay for her to act for us to go to the Court of Protection so that we can sell my dad’s house to pay for the care home fees. At the moment, there’s a shortfall of £1,000 per month which is clocking up against my dad’s house. It is all very depressing and confusing. The Government should have a debate about all this. Also, why do local authority people who are paid for by the State get a deal on care home fees. Effectively, this means that “self funders” are subsidising people who cannot pay and this is wrong.

    • Author
      Angela Sherman 6 months ago

      J – you may want to consider sending the care home invoices to the Continuing Healthcare (CHC) team at the NHS as a way of putting pressure on them to get the CHC process started. Just keep in mind any possible impact on quality of care provision though. You can also write to the Head of Adult Care at the local authority (LA) and let him/her know that the LA is potentially in an illegal position at the moment by not passing the responsibility for care to the NHS. This may also help: http://caretobedifferent.co.uk/care-act-2014-helps-you-with-nhs-continuing-healthcare/

    • SH 5 months ago

      Contact the CCG direct and request a checklist be completed they will then send out a nurse assessor to complete the checklist and a health needs assessment if the checklist is positive then a referral can be made for a social worker and a DST completed (you may not get a social worker being self funded) but at least an assessment can take place.

      • Author
        Angela Sherman 5 months ago

        A social worker must be involved – to look at the legal limit for local authority care. It doesn’t matter whether or not a person is self funding; a social worker or local authority representative must still be involved. That legal limit does not change just because a person is self funding: http://caretobedifferent.co.uk/nhs-continuing-healthcare-should-social-workers-be-involved/ Sadly, many families seem to be told that the rules don’t apply to self funders; they absolutely do!

  29. Janet Benson 6 months ago

    I totally agree with the three statements at the end, We couldn’t find anyone impartial to ask questions of. Even with the appeals process! Transparency and Openness do not seem to be words in their vocabulary! We have appealed about the process and will appeal about the recommendation when it is confirmed by CCG, as we are sure it will be. All on the same side!!!

  30. Moira Sykes 6 months ago

    The care home notes in the case of my relative are inaccurate. The manager has stated that they write them in the way to protect the dignity of the patient. The patent cannot read her notes. She is unable to feed herself or hold a drink. Her notes say “assisted and supported” with meals when in fact she has to be fed.
    I believe the home is opposing her getting Continuing Healthcare because of negative comments they have made.

Leave a reply

Your email address will not be published. Required fields are marked *

*

2100 characters max. All comments are moderated in line with our Acceptable Use Policy and our Terms of Website Use.