Quote this paragraph in NHS Continuing Healthcare disputes

Quote this paragraph in NHS Continuing Healthcare disputes

NHS Continuing Healthcare disputesIn NHS Continuing Healthcare disputes, make sure assessors record your concerns in writing

NHS Continuing Healthcare disputes are common, and they can occur at any stage during the Continuing Healthcare assessment process.

Many disputes arise during the multidisciplinary team (MDT) meeting. This is the full assessment – where the assessors complete a Decision Support Tool (DST) form and then make their funding recommendation. Where there is disagreement about this recommendation, a local dispute resolution meeting may follow.

You may have verbally expressed concerns during the MDT assessment meeting and also at the end when you hear the recommendation. But how can you make sure those concerns are noted?

There’s a paragraph in the National Framework guidelines (the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care) that can help you:

National Framework page 95, paragraph 70.4:

“Where an individual and/or their representative expresses concern about any aspect of the MDT or DST process, the CCG coordinator should discuss this matter with them and seek to resolve their concerns. Where the concerns remain unresolved, these should be noted within the DST so that they can be brought to the attention of the CCG making the final decision.”

So, if you have concerns about anything at the MDT meeting make sure they get written down – very clearly – in the DST. Also, given that your concerns must at some point be noted, don’t wait until a local dispute resolution meeting for this to happen; instead, get it done at the MDT assessment:

  • Before the MDT meeting ends, make sure you ask the lead assessor to include all your concerns – in writing – in the DST. (Better still, make sure the assessor does this throughout the meeting.)
  • Refuse to leave the meeting until this is done.
  • Ask for an immediate copy of the DST for your own records. (If the assessment is taking place in a care home or NHS office, there may be a photocopier nearby.)

As mentioned just now, where you disagree with the funding recommendation, there may subsequently be a dispute resolution meeting (held at local level) at some point after the MDT meeting. Your concerns should be fully addressed at that meeting. Take a look also at how the above paragraph from the National Framework ends. It says that your concerns should be:

“…brought to the attention of the CCG making the final decision”.

In other words, it is not only at the MDT assessment meeting that your concerns should be written down, and it is not only at a local dispute resolution meeting that your concerns should be addressed, but your concerns must also be addressed by the actual CCG decision making panel.

If your concerns have been properly recorded – in writing – in the DST, they should (in theory at least) automatically be seen by the CCG.

One final tip:

When asking the lead assessor in the MDT meeting to write your concerns in the DST, it’s also worth asking that person to add a note that you expect the CCG itself to fully address your concerns – in writing – in the letter that delivers the CCGs final funding decision.

Read more about preparing for a full MDT assessment

91 Comments

  1. MelanieP 2 months ago

    This number of specialists does mean a better constituted Multidisciplinary Team (MDT) in accordance with National Framework (NF). As four of domains are related to mental health then Registered Mental Health Nurse (RMN) is essential – I have had issues over this. Parkinson’s nurse can be invaluable as a friend of mine found with her Dad – they are properly able to deal with issues of medication which by itself can be a priority. Yes I found this number of people daunting hence my use of solicitor and advocate because as relatives we are emotionally involved to the point where it becomes difficult to make all the points – a professional keeps them on line in accordance with law and framework

    • Marina 2 months ago

      I would have loved to have the services of a solicitor, but I cannot afford it. It is a big struggle especially as I am elderly a feel easily overwhelmed.

  2. Richard 2 months ago

    A change for the better: !!!!! Mmmm
    Nearly a year on after out first “Multidisciplinary Team meeting (MDT)” with only a nurse assessor and my wife present (how little we knew then) to this invite today in the inbox:
    The MDT members have been confirmed as:

    A– RMN, CHC assessor
    B – RGN – CHC assessor
    C – Social Worker (LA)
    Z – Acute Clinical Nurse Specialist in Parkinson’s Disease
    Y– Occupational Therapist
    X– RGN, ward nurse

    Any thoughts or comments around the CCG getting to choose as many members of panel as they like , should all MDT members be Continuing Healthcare (CHC) trained ?

    MIL will by the date of the MDT meeting been FFD for over a year in the opinion of the NHS trust who have threatened to evict on two occasions but back off when told the defence will be Coughlan they really don’t want that fight before a judge.

    • Marina 2 months ago

      Richard this sounds like the Spanish Inquisition, all those people. I only hope that they all have a least seen the person involved. The thought of having to argue a case in front of such a large group would fill me with dread (and I think a lot of other people). Just a thought why don’t they put all of their wages into Continuing Healthcare (CHC) payments. I wish you the very best of luck.
      Does there ever become a time when one can just concentrate on visiting their relative and doing the best they can for them, without the continual threat of Multidisciplinary Team (MDT), best interest meetings etc.

  3. Lynda Summers 2 months ago

    We have a Decision Support Tool (DST) meeting next Wednesday for my Mum. At the moment she has full Continuing Healthcare (CHC) funding. Since the last assessment last March, she had a very bad fall in the care home and broke her hip. Subsequently she was handled badly by a senior member of staff (neglect case) which exacerbated the problem resulting in her being completely wheelchair bound and prone to falls if she tries to walk.
    As her Alzheimers has also deteriorated this is a daily problem. She will not use a walking frame so staff have to be on the alert for her to try and leave her chair. I rang the manager of the home last week just to check that they were aware of the meeting and she said we will loose the funding because her previous aggressive behaviour has somewhat mellowed now she is immobile. At the last meeting she scored 2 severe marks in Behaviour and Cognition, 1 high in Drug Therapies and Medication, 3 medium, 2 low and 4 no needs, one of which was mobility. She was very agile despite having a very crooked spine and being in a lot of pain. I think the Alzheimers has taken away her feeling for pain as she was on strong medication for years for that condition. What we are worried about now is how do we present the case for her mobility to be considered as high. Last time ,although she had no needs, her fall risk assessment said 13 high risk. She also suffers from virtually no vision in one eye and limited in the other. While her behaviour has definitely reduced as a lot of her old problems involved interfering with other residents and being very aggressive to her carers, especially during personal care I don’t know if this is still happening as I haven’t actually spoken to her nurse to find out if this has improved. I do feel very anxious about the upcoming meeting, as the assessor we have is very much against Mum getting the funding , always lowering the grade but we have managed to dispute this successfully up till now. Also we’ve had a problem with the carers in the past not keeping good notes about all the daily incidents as evidence. The manager told me that there is a new lady who has dealt with other residents and has passed almost everyone she assessed. Much to the amazement of the staff. It does seem very unfair that such an important decision can be so varied due to the person you are lucky or unlucky to have handling your case.

    • Marina 2 months ago

      Good luck. Our DST Meeting was a social worker. Saw him for the first time, the nurse from the ward had a look after his part of the workday for half a night two weeks before. The assessor hadn’t seen him at all but played down every domain we got part funding. I think some one must be at death’s door to the get full Continuing Healthcare (CHC) funding. He has very severe needs (my opinion, which doesn’t seem to count. See my previous post.) At least he is now in a nursing home near to me. I am worn out with the excessive hassle but nobody cares about that. All to do with saving money!!

    • Richard 2 months ago

      https://www.youtube.com/watch?v=HrpFLLwGqhs well worth the time watching.
      Well managed needs ( behaviour) are still needs .
      If the interventions / medications were taken away would the need still be there? Then it is still a need.
      It is not for the assessor to unilaterally lower a grade it must be agreed by the Multidisciplinary Team (MDT) the assessor is but one member of.

  4. Marina 2 months ago

    The saga continues.
    The social worker said there are now two more nursing homes which might accept him.
    I think they may have had to raise the money they will pay. However one on the last 3 inspections, had one inadequate criteria and the rest ‘need improvement’ I don’t think that will do. I’m trying to visit the other one (all good on last inspection). As the social worker is going away for 3 weeks, and her last day is tomorrow, she is trying to bully us into doing things too fast

  5. Marina 2 months ago

    The assessment was the full CHC assessment. The CHC assessor played down every domain. Then he said about only having partial funding. Have not heard from social worker who is organising nursing home, since the only one suitable turned him down (too many complex needs) and she’s only there one day before she is off on holiday. There seems to be stalemate.

    • Richard 2 months ago

      How can he have complex social needs so great nursing home can’t cope yet not have a primary health need? It’s an insane system; so much double think that Orwell would have been proud to recruit CCG’s to the ministry of truth.

  6. Vanessa 2 months ago

    I am no expert, just experienced 5 years of battling to get CHC for my Mother, still having a retrospective review of her care. Did you attend the checklist assessment for CHC and did you receive a copy of that assessment and reasons as to why he was not put forward for a full assessment for CHC? If you were not given a good enough reason for not being put forward for a full assessment, I would ring your CCG and formally request a full assessment. In the meantime gather as much information about your wife, ask for a full set of hospital notes and insist on being in attendance at the assessment process (you have every right to attend). I would suggest you do not discharge your husband from the hospital until you have had a full CHC assessment, you are entitled to ask for this. I suggest you read as much as you can on this website, possibly get the good book suggested to help you through the whole system. Stick at it and do not be fobbed off, it sounds as if you have a very good case for having all of his care paid for via NHS CHC.

  7. Marina 2 months ago

    My husband is in hospital and has just been allowed nursing care funding of £156. Not total Continuing Healthcare (CHC).
    He is bedfast, doubly incontinent, needs feeding has a pressure sore, in totally confused, has at Christmas been under a Section 2 for aggression. Is on one-to-one care in hospital due to falling out of bed. His dementia is such that he doesn’t know his family.
    The assessor played down everything in the assessment, for instance saying that he wouldn’t need one-to-one care in a nursing home. The only contribution the ward nurse made was to say could I cut his nails as she wasn’t allowed to. Now the only home that the social worker could find won’t take because they don’t do one-to-one care.
    There is no choice and we were told the hospital wanted him out the day after the assessment. The social worker was off 2 days last week and is only working 2 days this week and is then off for 2 weeks. I feel like piggy in the middle.

  8. Vanessa 2 months ago

    Jim, it is shocking that you have not had more support during such a difficult time for you. I am sure that you would have wanted to be the main carer for your partner, especially during the crucial 6 months following her injury, but you should have been given more financial support and help with care. A retrospective review is definitely what you require, but don’t hold your breath on it happening quickly, my Mother’s case is 2009-2013 and I am still hanging!! All the best, this site has been an absolute Godsend for me for information and support, I suggest you read as much as you can from all the links that Angela Sherman has so kindly provided for us. Kind regards, Vanessa.

  9. Vanessa 2 months ago

    Jim, yes sounds very similar to my experience, no mention of CHC when she was discharged from hospital, checklists done (one without even informing us and no record of any visit to my Mum in her care notes or care home visitors record), after asking for copies of said checklists they appeared 14 months later (computer generated, unsigned and with a date a year after the assessments were done!). After many years of asking for the whole period to be reviewed and them refusing because they felt their administration was “robust”, they finally agreed to pay an independent nurse assessor to review the whole period in question. I am currently waiting for a revised Needs Portrayal doc so that I can comment on it before it goes to the CCG for final decision. My advice to you is do not give up, keep at it, if you feel your partner is requiring more care than Pamela Coughlin (look her up on the internet) then keep going. I feel that I owe it to my Mum that my Father’s hard earned £200,000 should not have been paid to the Nursing homes, but should have been paid by the NHS as she definitely had a healthcare need and her needs were just not social needs. Good luck and keep in touch. Vanessa.

    • Jim Anderson 2 months ago

      Vanessa
      Outrageous! Shocking! An absolute disgrace. We’ve not spent a penny on care but I’ve been required to provide it and I’ve been unable to work as my partner’s care and support needs can be incessant and constant. The first 6 months following brain injury are crucial and other than the lack of CHC provided, the issue for us is my partner’s likely progress (I can’t use the word recovery) has been hampered by not having been able to access a day service for ABI (acquired brain injury) and similar services in the community (she can’t go out unattended and she’s unable to be left alone for more than a ‘couple of hours’). Once we get notification of the funding from the NHS, we will request a Retrospective Review and I believe escalate our complaint (via Voiceability) to the Parliamentary & Health Service Ombudsman (PHSO) and report individuals’ ‘conduct’ if appropriate to their Professional Bodies. Thanks again. Will keep you posted. Jim

    • Chris-G 2 months ago

      Elsewhere on the site are the many tales of my Father in law (FIL). One included having Continuing Healthcare (CHC) withdrawn whilst awaiting re-amputation of more of his left thigh. (Already a double amputee). The operation failed but no Checklist just ‘discharge to assess’ process that of course forgot to assess. Then the leg exploded during stitch removal. In and out of casualty with 6 hours no treatment because he was confused and apparently refused it. We were told the wrong hospital and could not support him before they released him to go home and die at his own expense, of sepsis. . . Again…..No Checklist ‘discharge to assess’ process imposed and of course no subsequent assessment. Photos and a complaint made. CCG director wrote: “The photos [of his festering thigh] you sent are irrelevant in the matter of requesting CHC assessments.” The nursing home kept him alive for some weeks on drips and supported by almost continual GP attendance until his mind cleared enough to want to go and have the leg amputated for the third time. All this happened back, from Oct 2013 and still has not been resolved even though he developed liver cancer in conjunction with his brain injury, double incontinence double amputations etc.etc……. He never got a Checklist or a CHC assessment since 1st April 2014. He died after bowel surgery; in his brain injured and drugged and infected confusion he ripped from his liver a surgically implanted drain designed to make his last two years more comfortable. It took him three days after that to die and all of the while he was of course expected to continue to pay for his healthcare. These people’s mortgages and careers are more important than you or your loved ones.

    • Chris-G 2 months ago

      P.s My FiL died in Jan 2016. And since Oct 2013 we have never paid the council a penny. We are still arguing over one of two Independent Review Panel (IRP) appeals. Apparently, NHS England can take 2 years and six months to answer our request for IRP whilst avoiding a local appeal due to possible delay, which is in line with the Framework. They refused a few weeks ago on the grounds that the original six months in which to make a local appeal was sufficient to have done so. Which of course puts us in the middle of catch 22. How could we make a local appeal having only been told 30 months after requesting to avoid such a local appeal, that we could not have a IRP hearing? As I wrote, the matter is yet to be resolved.

  10. Vanessa 2 months ago

    I am no expert other than having experience myself of a retrospective claim for my Mother dating back to 2009. Most important thing for you to do is to contact your local CCG and insist on an assessment being carried out now so that you can ascertain whether she is entitled to full NHS Continuing Healthcare (CHC) (she would have an initial checklist done, then if she qualifies a full assessment by a Multi-Disciplinary Team). With regard to her previous care, you should insist that they carry out a retrospective assessment of the total care period, and if they have already done so, then insist that they provide you with the completed Checklists and copies of any Needs Portrayal Documents or Decision Support Tools (DSTs) that have been completed. If they cannot provide these, then they have not followed correct procedure and you can insist on a review. You should have been asked to attend any assessments that were carried out as next of kin or as your partner’s representative. Do you have Power of Attorney, if not you should consider sorting this out so that you can act on your partners behalf, although at the end of the day she can have any close relative or friend act as her advocate I believe. First port of call for you though is to contact the relevant CCG and ask for an immediate NHS CHC assessment to be carried out and that you want to be present and to ask for all backdated copies of Checklists/assessments etc. Also, start taking notes of your partner’s care needs (daily if possible) and start gathering any information from any professionals or GPs that are involved in her care. Good luck and keep us updated.

    • Jim Anderson 2 months ago

      Vanessa
      Thank you for responding. Will keep you posted in case our experience helps others. She had a Checklist and assessment completed earlier this month (which we were involved in) and has been awarded joint-funded care. Problem is the Health Trust have no documentation from all earlier screenings (apparently there were 2 or 3 others) we weren’t involved in any way at all. Had never heard of CHC! Will wait for letter confirming award and ask for Retrospective Review. Jim

  11. Jim Anderson 2 months ago

    HELP please! What a mess! Partner (aged 39) suffered brain injury in Oct 2015 and has substantial support needs. I’ve been full-time carer since her discharge from hospital in Mar 2016, unable to work due to her needs. She’s received no support (whether Local Authority or NHS funded). I do it all on my own. She’s now been awarded joint-funded care. We were not involved in any Continuing Healthcare screenings except for the most recent one (apparently there were ‘a few’ in 2016), her consent for earlier screenings was not obtained, her capacity for earlier screenings was not assessed and we did not receive copies of earlier Checklists. We made a formal complaint and the Health Trust acknowledge that not only have they failed to follow proper procedures but they don’t have copies of earlier Checklists. My partners’ care and support needs haven’t changed one jot so we want to challenge earlier decisions. How do we proceed? Do we ask for copies of documentation they have when she was screened? Do we request a Retrospective Review? Do we escalate the complaint through the Health Trust’s complaint procedure (Local Resolution Meeting) and then to the Parliamentary & Health Service Ombudsman (PHSO)? My partner lacks capacity and I’m not sure what to do. Any thoughts? Thank you for reading. Jim

  12. Ian Grimmett 3 months ago

    In the unlikely event that anybody having issue with NHS or Social Workers professionalism or competency, do not forget that apart from the Healthservice Ombudsman there is also a Local Government Ombudsman that deals with that type of issue and that can also be done on line.

  13. MelanieP 3 months ago

    I had exactly the same thing said to me at our Local Appeal by the nurse on the panel when I explained how carefully my Mum requires to be positioned – she is bed bound, has severe rigidity and pressure sores. They would only opt for the “top end of high” – clearly scores against descriptors have been pre decided in order to downgrade domains – I don’t see anything in Framework which allows this

  14. Graham Davis 3 months ago

    We had 1 Severe and 6 Highs at the Decision Support Tool and were refused funding. On the Mobility domain, weighted as High, we are told by the Multidisciplinary Team that Severe is for people who cannot use any limbs thereby avoiding a second Severe weighting. Can this be correct? Is there a true definition of Severe or should there be a more liberal interpretation of the descriptor?
    Our Mum is chair and bed bound and has not walked for 2 years.

    • Chris-G 2 months ago

      Graham….. The domain level is given in relation to the needs of the patient and it not entirely dependent upon diagnosis or lack or otherwise, of abilities. eg. A person with no balance that also lacked sight, would have greater needs than someone with sight and balance that required hoisting into a chair. However, a severe is supposed to be a certainty that Continuing Healthcare should be awarded. If someone other than the Multidisciplinary Team changed this then they were wrong to do so because altering a Decision Support Tool is unlawful.

  15. Chris-G 3 months ago

    Denise,
    You need to start looking at all needs and their complexity and/or unpredictability and/or intensity along with any obvious requirements for continuity of care. Create a list of what is actually involved….. Not just that, lets say, ‘they are doubly incontinent’….. You need to record all of the steps involved in providing care in such circumstances. When the assessment is undertaken then you will be equipped to argue every time the assessors try to minimise each and every need.

  16. Denise D 3 months ago

    I am new to this site and it has been a god-send. My mum is 87 in the latter stages of dementia ( although not end of life stage) has epilepsy, is doubly incontinent, has trouble swallowing and now has to be turned in bed as she is unable to do this herself. She has been cared for at home for the last five years and has contributed financially to this but she is currently in hospital and I have asked for a Continuing Healthcare (CHC) assessment. The discharge coordinator told us she does not qualify for CHC and will only receive NHS Funded Nursing Care.

    She said only people with severe needs qualify for CHC, like those without an oesophagus or who have had a tracheotomy! I know she is talking rubbish. I asked for a copy of the Checklist which I got and recommends mum does go to full assessment- so the coordinator was either lying or had not seen the Checklist when she said mum was not eligible. Having looked at at the Checklist in some domains they have given her a rating but left the evidence bit blank. Should I challenge this? They clearly haven’t completed the paperwork to the required standard but I am wary if I rock the boat at this early stage they may redo the Checklist and decide she shouldn’t go to full assessment just to spite me because I am being difficult. Mum has scored 5Bs on the checklist so does go through to the next stage. Any thoughts or advice greatly appreciated.

    • Author
      Angela Sherman 3 months ago

      Thank you for your kind feedback on the website, Denise. The discharge coordinator has no right to simply tell you your mum is ‘not eligible’. As you suspect, she clearly has no idea what she’s talking about – and we hear from many families who are given false information like this. I can understand your concern about whether to challenge the Checklist at this point. How you do it and at what stage may depend on the attitudes of those involved. You may want to wait until the multidisciplinary team (MDT) meeting is scheduled and/or until it takes place, but in the meantime I would strongly recommend pulling together into a document the details all the points you disagree with in the Checklist and why. You may want to then present this at the start of the MDT meeting, so that it’s on the record.

  17. Mike Clark 3 months ago

    After a long and stressful 5 years, I finally achieved some NHS Funding for my now 98 year old Dad who lives at home with 24/7 nursing care. In what has been a very high profile case, with national and international media attention, the local CCG and Social Services agreed a Shared Funding arrangement last year. However, my Dad is still being asked to contribute to the ‘Social Services’ part of the Shared Funding.
    What is concerning me now – and has done for the 5 year period – is that when my Dad’s Nurse/Carer has her daily break of 2 hours, Dad is left in the care of untrained Social Carers who know how to make him a cup of tea but have no knowledge or understanding of his medical condition. Dad has had syncope attacks when the Social Carers are on their own with him and did not have a clue about what to do – neither are they able – or willing – to apply oxygen when he has a COPD attack. The response from the Council Social Services who supply the Care Agency, and the CCG, is for the NHS to train the Social Carers to deal with these and other health issues when they are on their own with Dad. I have disagreed, saying that this is a Health/NHS matter and is ‘beyond the legal responsibility’ of Social Carers to do this (the Coughlan case). The CCG and Social Services do not want to listen to this – importantly Dad is still paying for these 2 hour breaks each day as it is still being sourced as ‘social care’. Am I right in my thinking and if so what should I do next? Many thanks. Mike

    • Author
      Angela Sherman 3 months ago

      I think you’re right in your thinking, Mike – although keep in mind that, according to the Continuing Healthcare guidelines, it doesn’t matter who actually administers the care, i.e. it doesn’t have to be an actual healthcare professional or RGN. That said, the person delivering the care should of course be competent! It does sound as though this is a nursing care matter, as you said. If you haven’t done so already, you could write to the Head of Adult Care at the local authority and make the point strongly that they may be acting outside the law by providing (and charging for) care that is outside their legal remit. You may also find this helpful: http://caretobedifferent.co.uk/wits-end-nhs-continuing-healthcare/

  18. Alison L 3 months ago

    Thanks all for your supportive comments. They really are determined to ignore the law aren’t they? I notice that the growing problem arising from this complete split between social care and the NHS is increasingly in the news and being discussed in parliament. Unless this is properly addressed, the whole system will fall apart – correction… I think it already has.

  19. ian grimmett 3 months ago

    Yet another failure of the system.
    If it was not so important in all of our cases, it would become boring.
    We all suffer the same in that this damned situation takes over our lives.
    There is no accountability whatsoever, no fear of punishment, no fear of legislation, no admittance of failure, no sense of moral compass, no regard to the core values of the process, no sense of responsibility, it goes on and on and on and on.
    When is somebody in authority in the government going to step up to the plate and bring these miscreant authorities and organisations to book?

  20. Alison Ledgerwood 3 months ago

    My father and I are now at our wits end. I want to give up but he would like to keep going. My mother died in October 2015 and we have had one long fight ever since she was admitted to a care home from hospital in February 2015.
    After much pleading on our part and endless maladministration on the part of the Clinical Commissioning Group (CCG) we finally had an Multi-Disciplinary Team (MDT) meeting in July 2015 and a decision declining funding was issued issued on 30th September 2015. We had a local resolution meeting on 28th April 2016, which was a complete waste of time as we just went through the same stuff with the same people, and then finally we had a Local Appeal meeting on 28th September . A final decision declining funding was received on the 13th October.
    My mother was bed ridden, doubly incontinent, had a severe heart condition and Alzheimers and was unable to do anything at all for herself. The Local Appeal Meeting agreed to up the scores in two of the domains but still maintain that her needs were primarily social. I will not go into the details of all the mistakes in procedure that the CCG made throughout the whole process.

    Now we have asked for an Independent Review Panel (IRP) but the the notes they have sent us say the “Chairs of IRPs will not allow proceedings to be drawn into discussions on points of law”. However our whole case rests on points of law. My mother’s needs were equal to, and in some areas exceeded those of Pamela Coughlan. The CCG refuse to accept this. The fact that her needs were managed successfully does not mean that she did not have these needs.

    The CCG also say they have a huge backlog of cases and they say that they will inform us “as to whether or not an Independent Review ” should be arranged and we have to put everything in writing (YET AGAIN!) and fill in a detailed questionnaire. Only then will they consider whether or not our case will be put forward to the next stage.

    Firstly, I thought that we were entitled to request an Independent Panel Review. Secondly, what is the point of us having one (assuming it is ever granted) if they refuse to consider points of law? How can they possibly do that?

    We had a specialist advocate working with us or we would not have got this far. She was an ex-social worker who really knew her stuff, but sadly she is ill and unable to continue. A relative, who is a barrister (although not specialist in this area) was going to help us to the next stage but there is clearly no point if the CCG refuse to take the law into account.

    It seems to me that the CCGs flout the law constantly and I cannot see the point of going on if they cannot be made to take it into account.

    • MelanieP 3 months ago

      Alison your story is familiar to so many of us – problem is that CCG’s are deliberately flouting the law, National Framework etc in every respect. Speaking from personal experience the stress is immense. I am only coping just about because I have a solicitor who specialises in this area. I would recommend the use of a specialist in this area of the law.

      This is not a fair playing field. The agenda for all CCG’s is to use every means possible to reduce budget spend on CHC. The only way to hold them accountable before the law and the guidance is to use this law against them. As I have said here before – we are all working in stress filled silos all over the country fighting the same battles over the same issues. Without concerted class action /judicial review this is going to continue. They work on the premise of wearing us down and us giving up – so many people do. Should my recent local appeal result in independent review then I will be involving my MP.

    • Shirley L 3 months ago

      Hi Alison
      I completely understand your frustration. We went to Independent Review Panel (IRP) last October with my mother’s case which has been ongoing for 4 years and we are now in the process of preparing a case for the Ombudsman, needless to say Mum was again refused funding. My experience was, as you suggest, one in which the chair and panel would not be drawn into the actual points of law within Continuing Healthcare and especially tried to glance over the legal remit of Social Services. The initial social worker involved in our case was not knowledgable regarding mum’s needs at the time of the first Decision Support Tool (DST) and I have always argued that this did not represent a correctly formed Multidisciplinary Team (MDT). There was also no co- ordinator assigned, which is again incorrect procedure. The original DST completed by the nurse assessor and social worker has been lost or destroyed by the CCG’s own admission and a second DST performed behind closed doors one week after the original MDT meeting, saw 3 of the weightings agreed at the initial MDT (2 severe 3 high 5 moderate 1 no need) lowered so that Mum did not meet the criteria!! This was again incorrect proceedure. A complete catalogue of errors you would think? However the Chair at IRP simply brushed over these issues . I argued my case for over 3 hours but to no avail. The Chair’s report was cherry picked very much in the favour of the CCG in our case. My advice to you would be to definitely take someone with you who can take notes on your behalf and note everything that is said. Better still record the meeting (if they will allow it) and then there can be no dispute about what was said. My experience is that some very important issues discussed at IRP meeting were in Mum’s favour but have simply been disregarded or completely left out of their report and recommendation , hence we are now going to the Ombudsman. Please don’t give up. That is exactly what they would like you to do !!!!

    • Chris-G 3 months ago

      Alison, Try not to despair. The whole lot of us suffer this nasty process along with you in various degrees. As for the comments about legal points. You cannot argue about the law and why it might not apply…… However, almost every time law crops up, I would list it and then seek the corresponding ‘Procedural Failure’. Then I would make the argument around the failure because that is permitted.
      As for the remarks about using Coughlan as a comparator…….. That is entirely correct due to the fact that the National Framework records and uses Coughlan 21 times as far as I can see. So paragraphs that state :- ‘ 1.2 Whilst there is no legal lower limit to what the NHS can provide, there is a legal upper limit to nursing and healthcare that can be provided by local authorities. This is a complex area of law and there is no simple authoritative definition of what is beyond the responsibility of the local authority. The powers and duties of local authorities are a matter of Statute and case law, including the Coughlan Judgment.’ Also include legal argument that is entirely correct for an Independent Review Panel (IRP) chair to hear, because you or a lawyer would not be arguing the correctness or otherwise of the laws involved but the correct application of those laws.
      Finally…… How can a IRP not comprehend if argued that:- ‘• In respect of Ms Coughlan, her needs were clearly of a scale beyond the scope of LA services.’ When that is written in exactly that way at page 125 of the National Framework. To compare your loved ones needs against Coughlan’s would seem to be obvious as should the outcome be.

    • Chris-G 3 months ago

      I forgot to add…. If your barrister relative wants to be involved then they should be. The fact that they will not be able to re-run the entire Coughlan decision or try to change existing acts of parliament will not alter their ability to get your case over, assuming that they can understand the intricacies well enough.
      It is also the case that the last three Independent Review Panels (IRP) that I have attended, were chaired by barristers. And they well understood me when I challenged the unlawful actions or our Commissioning Support Unit/CCG because I was in fact making legal points and not arguing about the law as it stood. What is written in the IRP and NHS England’s appeal pack is in fact misleading but then so much is within this spiteful process.

  21. Vanessa 3 months ago

    Thank you all for your kind comments and advice. I wish you all well with your cases. I am too confronted with a Nurse Assessor who has prepared a Needs Portrayal Doc based on scantily written inadequate “care” notes, (which I provided as the CCG were too slow in requesting them and the care home changed hand and they destroyed all old notes!). I have had a meeting to discuss the Needs Portrayal (NP) and have provided comprehensive evidence (and provided again copies of all that evidence!) and have given her all my domain scorings and reasons why. She has gone away to produce an updated NP and then she is going to have a Multidisciplinary Team (MDT) meeting with an ex Occupational Health Nurse who will produce the Decision Support Tool (DST) and recommendation and then they are going to send to me at the same time as sending to the CCG. No one involved has ever met my Mother, no one is from her Local Authority (LA) or Social Services (SS) and I am not being given the chance to comment on their domain scores or recommendation. I think I will await the outcome and then challenge them that the DST recommendation cannot be lawful as I have not had the opportunity to comment on it prior to CCG decision and also that an LA/SS representative hasn’t commented as to whether she was outside their legal remit to care for. I just don’t know how people cope with all this, my case has been ongoing since 2012!

  22. Ian Grimmett 3 months ago

    Vanessa.
    It is prof Clements, not Coleman.

  23. Ian Grimmett 3 months ago

    Vanessa.
    I am no expert, just gained knowledge over the last 18 months.
    Re. the Decision Support Tool (DST),. I don’t know if you have a definite entitlement to see it before it goes for ratification, you may have but I cannot find it for definite within the National Framework (NF), perhaps somebody else reading this can clarify the point.
    You should certainly get a copy with your comments on but, when we have received them previously, the comments on it were those that we made as interpreted by the person entering them which can be a totally different thing altogether, and, it was sent after the decision had been ratified.
    As we understand it, normally, the NF states that, the Multidisciplinary Team (MDT) decision will be supported by those making the ratification decision so we are all on losers to start with.
    You mention legal limit for care.
    This is a current and very sore point for us and will form part of our OTHER complaint which will be submitted in due course covering the period December 2015 to present day.
    Briefly, out last MDT in the summer, was attended by a Local Authority(LA)/Social Worker/Adult care specialist, whatever they are called, together with 2 other MDT team members including a coordinator.
    We informed the CCG of our concerns regarding the meeting within 48 hours, according to the NF there should have been a meeting held with us to discuss our concerns, before the documentation was sent of for a final decision.
    That, is in the NF.
    It did not happen!
    That LA rep made inappropriate comment during the MDT and we made a complaint to the local county council and had a meeting.
    We cannot discuss that here for obvious reasons but,. it was eye opening and the outfall from that continues.
    The LA rep has a duty to act independently in her own right on behalf of the LA to assess people, she is not part of the tag team from beginning of the MDT, she has responsibilities to come to conclusions of her own
    The upshot of that MDT touches on what you say.
    The LA rep is “supposed” to prepare a professional, clinical signed dated assessment that identifies whether or not the person applying for CHC is within LA limits for care.
    Once that assessment has been done, THEN the MDT go on to discuss the case which eventually reveals whether or not the person is entitled to CHC.
    Effectively and practically,. without LA assessment, the qualifying decision for CHC cannot/should not be made as, without it, neither the LA or the MDT know whether or not one or other of them is unlawfully taking responsibility for the persons care.
    It is quite clear in the NF and the LA guidance for Social workers/adult care managers.
    In our case, NO such report was made, no assessment was made in any shape or form, NONE of the MDT members knew or had ever met or spoken with our friend prior to or during the MDT (contrary to the NF)
    In some ways we are where you are.
    (We have demanded an Independent Review Panel (IRP), but will have to attend a Local Appeal panel first.
    Because or our past jobs, we relish these meetings as all our facts and figures are backed by evidence, particularly from the NF and it is so important that you know that document which is daunting.
    If you are sent any letters or comments, go through line by line and find relevant info. in the NF or other guidance that blows their argument out of the water.
    We have found this gives good results as it shows up how little some of the alleged professional staff know about the regulations and there requirements!)
    We are at the stage where, THINK ABOUT THE INSANITY OF THIS:-
    We are going to have a Local Appeal Panel regarding a decision made by a ratified MDT where, the MDT was held initially by people who did not know or had ever met the client AND where the LA had NOT prepared an assessment deciding whether or not the person was within LA limits or not!!!
    AND all of that is absolutely and totally contrary to the NF, LA guidance and rules !!
    Regarding recording meetings.
    There is no law preventing this, we have managed it on one occasion BUT, they do not like it as they are so obviously unsure that what they say is correct AND they get extremely uncomfortable if there are people who are challenging their statements who have equal or, in some cases, more knowledge than they do.
    The other unrecorded meetings minutes always lack the detail of what we have said and cherry pick words and statements, generalise, minimise and misreport discussions.
    The NF, once you take the time to read it, really is just a process that shows the way the CHC applications should be dealt with.
    Again, I suggest you take a copy with you and when you have good reason to disprove what they say, put it firmly down in front of them and politely but firmly and with confidence say, these are the rules, this is your instruction book and bible, you are not following it because………….
    At our local appeal panel in a month or two, sparks will fly and we relish it.
    Good luck.
    By the way, the lady we are doing all this for died months ago but, we will not give up the fight!
    Ian G.

  24. Jo 3 months ago

    The best bit of advice I was given was firstly to read Angela’s book ( best £30 I’ve ever spent) read and digest. Highlight, page mark and download guidelines. I went to my mothers multi agency meeting and pulled them apart.
    I clearly knew more than them and they allegedly do the job!!
    Refer to your documents and insist on everything in writing or e mail so you have the paper trail. I haven’t received anything to state what the initial scores were. I have power of attorney for mum yet I wasn’t even contacted and told this had taken place. The care home manager rang to inform me.
    Because of my mothers terminal health the eventual panel did grant continuing care. However mum has been clearly entitled to this for some years and I didn’t know about it.
    Just do your homework, record everything and be a nuisance without offending. If you read around your subject I can promise you , you will be better informed than most in the room.
    I now have to tackle the issue of claiming the backdated funds they say mum owes.
    Any advice anyone? Anything appreciated.

    • Chris-G 3 months ago

      Nice Positive Post……. If the amounts paid are significant and because as LPA you would have right of access to data and patient records, I might consider a lawyer. If you can find a specialist Barrister, you can approach them directly on the grounds that you probably know more about it than even they or a solicitor do. Or you could just use a specialist law firm (internet search), to get an initial idea of costs and the likelihood of success.

    • Author
      Angela Sherman 3 months ago

      Thank you, Jo, for your very kind words about the book.

    • Author
      Angela Sherman 3 months ago
      • Jo 3 months ago

        Thank you for that. It is appreciated. Jo

  25. Vanessa 3 months ago

    Ian, don’t worry firm and dogged is exactly what I am being! I have insisted that I see copy of the DST and domain scores and recommendation PRIOR to it being sent to the CCG and that I have the right to put my objections/comments on that DST before the CCG see it and make their decision. As far as the Multi-Disciplinary Team is concerned, if the “Occupational Therapist” turns out not to work for a Local Authority or Social Services, can I reject said DST? I know that the MDT should be examined from a Local Authority perspective so that they can decide whether my Mother was above the legal limit for their care, but if this is not the case, can I refuse to accept that DST? I have insisted in writing, twice that I attend the MDT meeting, but have been refused (in writing) and have, so far, been refused to comment on the DST prior to CCG making the overall decision. The whole “system” stinks!

    • Chris-G 3 months ago

      Vanessa there is supposed to be a crucial (yes it does state that in the Framework), crucial face to face meeting between the local authority (LA) and NHS representatives on a Multidisciplinary Team (MDT) so that an agreed recommendation can be recorded on the completed Decision Support Tool (DST).
      ‘PG 30 What is a multidisciplinary team in the context of NHS continuing healthcare?
      30.1 ‘Multidisciplinary team’ (MDT) has many meanings but in the context of NHS continuing healthcare the Standing Rules Regulations define a ‘multidisciplinary team’ as:

      ‘(i) two professionals who are from different healthcare professions, or

      (ii) one professional who is from a healthcare profession and one person who is responsible for assessing individuals for community care services under section 47 of the National Health Service and Community Care Act 1990’.

      30.2 Whilst as a minimum requirement an MDT can comprise two professionals from different healthcare professions, the Framework makes it clear that the MDT should usually include both health and social care professionals, who are knowledgeable about the individual’s health and social care needs.’

      Here is some more:-
      ‘PG 31 What happens if the coordinator is unable to engage relevant professionals to attend an MDT meeting?
      31.1 CCGs should not make decisions on eligibility in the absence of an MDT recommendation, unless exceptional circumstances require an urgent decision to be made.

      31.2 Apart from ensuring that all the relevant information is collated, it is crucial to have a genuine and meaningful multidisciplinary discussion about the correct recommendation to be made. This should normally involve a face-to-face MDT meeting (including the individual and/or their representative). If a situation arises where a relevant professional is unable or unwilling to attend an MDT meeting every possible effort should be made to ensure their input to the process in another way, such as participating in the MDT meeting as a teleconference call. ‘

      Sooooo….. If it is a usual requirement that the LA has a representative on the MDT then it is crucial that they are involved in a face to face discussion at that same MDT assessment. No social worker = no crucial discussion in my mind that = no lawfully completed DST and no lawful Recommendation to send to the CCG.

  26. Ian Grimmett 3 months ago

    Vanessa.
    “What your CCG do “is an irrelevant statement by them.
    What they are supposed to do and legislated to do is FOLLOW the National Framework NF.
    No ifs, buts or interpretations or variations.
    It is a set procedure and they have to follow it.
    It is the law, it is statute.
    See you tube, Professor Coleman re Continuing Health Care CHC.
    Sadly their statement is not uncommon, when I was told that, I put down a copy of the NF in front of them and said “This is your bible and instruction book combined for CHC and you have to follow it.”
    They did not like it bit it is the truth.
    Generally the professionals involved in CHC are not accustomed to being challenged, they don’t like it but, that is there problem and they need to get over themselves.
    Be firm and dogged in pursuit of the whole CHC process.
    Ian G

  27. Judy 3 months ago

    Is a registered nurse and a mental health nurse a multiple discipline? The CCG in our area seem to think so. Also on the DST doubt any of your input is recorded. Ours just said “your comments are noted ” but no detail of the comment was written into the DST. We were allowed to record the LRP meeting. What a farce, so patronising especially the chair who was the Deputy Exec of the CSU. Don’t trust them that they are taking notes , they pretend to and anyway probably won’t let you have any copies if they have written anything meaningful. Good luck John, let us know how you got on, what type of appeal is it???

    • Chris-G 3 months ago

      Judy. Next time take a copy of the blank Decision Support Tool (DST) from the internet. Fill your own comments in at the relevant points.
      As far as some other comments: This is what the National Framework states:-
      ‘30.2 Whilst as a minimum requirement an MDT can comprise two professionals from different healthcare professions, the Framework makes it clear that the MDT should usually include both health and social care professionals, who are knowledgeable about the individual’s health and social care needs.’
      This is fact and a requirement in law. I would argue that it applies in all but the most exceptional circumstances and such circumstances should be thoroughly explained.
      It cannot be correct that two NHS personnel alone can represent a council and it’s council taxpayers’ interests. Otherwise, why would the Framework insist on the following?:-
      ‘76.4 The roles that a LA should undertake as part of this duty include:
      • making staff available wherever practicable to be part of multidisciplinary teams (MDTs) which will undertake joint assessments and jointly complete the DST (including where the individual is a self-funder) […]’
      A duty by the way, is an unarguable task that actually does have penalties for non compliance with the law.
      I might also argue that a nurse is a nurse is a nurse. What they do whilst being a qualified nurse to vary their careers is not an alteration to their basic professional qualification unless they dropped out of the role of nurse altogether. After all, a General and a Private are both soldiers. Just my opinion you understand but the framework does seem to back me up.

  28. Lis 3 months ago

    Our area no longer give their decision to award or not at the end of the MDT meeting, preferring instead to write, presumably to avoid challenge. Is this within the framework?

    • Chris-G 3 months ago

      The MDT after the assessment hold an in-private session to decide the domain levels and that is usually done in conjunction with someone from the home or care organisation if still in their own homes. How is it an agreed recommendation, as law requires, if the other members of the MDT and the subjects and representatives are not made aware of the recommendation? Here is what the Framework states……….. ‘30.4 If the individual and/or their representative are not present for the part of the meeting where the MDT agrees the recommendation regarding primary health need, the outcome should be communicated to them as soon as possible.’ Or in the rule immediately before, it states………. ‘Therefore the MDT meeting should be arranged in a way that enables that individual to give his/her views on the completed domain levels before they leave the meeting.’ …… So without being told the agreed recommendation or of a disagreement and failure to agree, then how can you give your views on the agreed domain levels and have them properly recorded?

      • Fred 3 months ago

        Chris G – I am unable to locate these quotes on the Framework – can you please tell me on which page they appear?

        • Chris-G 3 months ago

          Fred, Have you got a copy of the National Framework (2012) on computer? If so, you can use the find function if it is in a word processor format.
          I usually use one that is lodged in favourites on my internet browser (Google etc.) Then I can use the find function belonging to the browser once the Framework page is opened by the browser. I use any number of words and acronyms to search the document so that I can see every use of the word. For example the Decision Support Tool (DST) is mentioned 114 times in that short form within the Framework document. To answer your question: when I typed 30.4, I got directly to page 74 of the Framework. As is Practice Guidance (PG) note 30.3. The reason for relaying this is that it might help you and others to know that I open a blank or ‘research’ word processor file and whenever I find something in the rules or guidance or the Law, I copy it and paste it to the word processor file along with the title of the rule or law. That way I know where it is and can cut and paste it as many times as I want when repeating the appeals documentation. So for example I might repeat the same bit of law at every instance of the CCG’s ignoring of it during assessments and local appeals, rather than simply making a list and then only once mentioning the law…… It makes for very long appeals documentation and engenders more errors by the CCG because they fail to address the concerns that are individually laid out; and that failure can be further exploited at Independent Review Panel (IRP) stage.

        • Author
    • Author
      Angela Sherman 3 months ago

      Lis – the MDT will make a recommendation, however it is the CCG decision making panel that makes the actual funding decision, and this will be sent in writing and should include a full rationale for the decision.

  29. IAN GRIMMETT 3 months ago

    Colin.

    We all sympathise regarding the initials but, if you are at the beginning if this process, you will, sadly, soon know what they all mean.
    They will eventually trip off your tongue.
    Good luck with your enquiries.
    Onward and upward.
    Regards.
    Ian G.

  30. Chris-G 3 months ago

    The national framework requires the person or their representative or both even, to be present at the MDT assessment, if they have cognition or if that is what is necessary in someone’s best interests. Also, check that it is a council occupational therapist and not just a rebadged NHS Registered Nurse. A MDT must not consist of two nurses alone. There are supposed to be multiple disciplines. Also, can a person charged with Occupational Therapy undertake the creation of an enforceable assessment in their own right or does it actually require a trained social worker? There is supposed to be an assessment made on the council’s side that is separate from the MDT assessment.

  31. Vanessa 3 months ago

    I have been told I cannot attend the MDT meeting with the Nurse Assessor and an Occupational Therapist as that is not what my CCG do. I have also been told that following their meeting they will produce the DST and recommendation and send a copy to me at the same time as to the CCG. I have told the Nurse Assessor that I should have the opportunity to comment on their recommended domain scores and recommendation and my comments should be noted on the DST PRIOR to it being sent to the CCG for decision. I am awaiting comments from the Nurse Assessor as to whether the CCG will allow this (even though it is part of the NHS National Framework guidelines that I should be allowed to!). I think my CCG make up their rules as they go along as I seem to know more about the National Framework Guidelines than they do!

  32. Colin Smith 3 months ago

    Useful information. Thank you.
    Can we please avoid these acronyms. What is an MDT , CCG & DST? Makes it very difficult to read.

    • Author
      Angela Sherman 3 months ago

      Take a look at the second paragraph, Colin – MDT and DST are mentioned there in full. CCG is Clinical Commissioning Group.

  33. Fred 3 months ago

    At my relative’s recent MDT assessment, the assessor stated that she & the social worker would not pass any opinion or decide upon the mark for any of the domains at that time as they had too much paperwork to consult even though they had been doing that for 2 hours at the nursing home prior to our meeting. Therefore, although we were asked our opinions/thoughts on each of the domains & the family’s score was recorded, we were unable to discuss and/or disagree with the MDT’s decision at that time. In addition, the nursing home’s registered nurse who attended was allowed to “sit on the fence” on a couple of domains & record no score. We have now received the completed DST & the decision is that our relative is not eligible for CHC funding. The scores that the MDT have recorded are quite ludicrous in at least 2 domains, including one where the nurse was encouraged to abstain and they have marked lower in other domains where the family & the nurse agreed a higher mark. In addition, the first page of the checklist completed by the home upon admittance has the question ïs the resident self funded, yes/no” – therefore both the NHS Assessor & the Social Worker knew that there were private funds available prior to the assessment. Are these all good grounds for an Appeal please?

    • Chris-G 3 months ago

      No one on a MDT is allowed to refuse to score a domain level. The DST is there to assist with a recommendation and the subsequent decision. If part of the team could not decide on domain levels then how was their part in creating a supposedly agreed recommendation, valid? I assume that you are talking about the DST as was sent upon the decision being made. If so then the original DST should be sought for comparison. I say this because it sounds as if the eligibility panel has altered the original DST and that is illegal. It is also a specific offence under part of one of the more recent health law changes. In that one is not permitted to deliberately publish information that is untrue. Altering a DST is, in the Framework, stated to not be permitted; ergo there is the clear offence of publishing an untruth that someone created and that action carries a potential two year prison sentence. Here is the Offence under the Health and Social Care Act 2014……… ’92
      Offence
      (1)
      A care provider of a specified description commits an offence if—
      (a)
      it supplies, publishes or otherwise makes available information of a specified description,
      (b)
      the supply, publication or making available by other means of information of that description is required under an enactment or other legal obligation, and
      (c)
      the information is false or misleading in a material respect.’
      It is obvious that a manager that alters a MDT’s DST to suit his budgetary targets and then sends the forgery to you has committed the offence.

      • Fred 3 months ago

        Chris-G Thank you so much for your response. I do not think, or am suggesting, that the original DST was altered. IT would, I believe, just state as does the completed DST we have been sent, that the Nursing Home Nurse “was invited to offer a level of need; no score reflected”. The NHS Assessor actually asked the Nurse, as she was taking a while to give her mark, whether she wanted to “sit on the fence” – the family assumed that she would possibly give her mark to the Assessors after the meeting. Is there anything in the Framework or anywhere else that states everyone has to give a score? Does this nullify the Assessment & therefore rather than starting the long appeal process, can we insist upon another MDT meeting?

      • Richard 3 months ago

        thanks Chris just about to start putting together a complaint following our lost local appeal where on the record the nurse assessor stated in absolute terms x y &Z thanks to DPA we have her e mails where she says the exact opposite
        panels reasoning in turning down the appeal was ostensibly influenced by x y z

        noli illegitimi carborundum

    • Richard 3 months ago

      Fred I would want to know what training the social worker had in CHC if none shouldn’t have been there if trained then this behaviour is tantamount to professional negligence and certainly warrants a complaint to the professional body

      • Fred 3 months ago

        Richard what would we have to do to ascertain the social worker’s training? What behaviour in particular are you referring to as negligence i.e. the fact that she knew our relative is self funded, the fact that she did not offer opinions on domain scores at the meeting (neither did the CHC Assessor) denying us the chance to disagree etc. or the fact that she has concluded that our relative’s needs are not beyond the LA legal remit? We’d appreciate any and all advice offered please.

    • Author
      Angela Sherman 3 months ago

      The process they’ve used sounds thoroughly flawed, Fred – and yes, most definitely appeal. The purpose of the DST is a support tool, to aid decision making, and it cannot do that unless completed in full. Page 16 paragraph 34 of the actual Decision Support Tool document requires all parts of the form to be completed: https://www.gov.uk/government/publications/national-framework-for-nhs-continuing-healthcare-and-nhs-funded-nursing-care In addition, page 45 contains a table that must be filled in with all the scores from all the domains. It sounds as though they have taken financial considerations into account, which is of course quite wrong. Insist that a new Multidisciplinary Team (MDT) meeting is held and make the LA aware that you believe they are acting outside their legal remit. Some of these points may also help: http://caretobedifferent.co.uk/wits-end-nhs-continuing-healthcare/

  34. Sally Lord 3 months ago

    Thank you so much for the great ideas. Do you have to tell them you are recording the meeting. ?

    • Chris-G 3 months ago

      I wouldn’t unless they are doing it too.

    • Author
      Angela Sherman 3 months ago

      Sally – whether you tell them or not is open for debate. Given that the whole assessment process is supposed to be open and transparent on the part of the assessors, and yet as we know very often it is not, it may be a good idea for families to be open and transparent, to avoid potentially being accused of the same thing. However, if you tell the assessors you are recording the meeting, there is a risk that they may try to stop you. Recording it is simply one way of creating a word-for-word record of the meeting, comparable with a full written transcription – so in that sense there is no reason for assessors to stop you. The reality may be different, of course – and it’s much easier to prove what someone has said when you have an audio recording. See how it goes.

  35. John Stewart 3 months ago

    What happens when it is an annual review for Continuing funding (or not!). I had one for my wife last week (it was me who provided them with a copy of previous review!) and altho I, my son and Care Home nurse made comments and disagreement during the review, I’m pretty certain they were not written down, and we were not offered a copy of the notes written down by the assessor, although a photocopier was available. Further, her ‘supporting’ member of the ‘team’ was from the local Council Support Team, who also disagreed with some of the assertions made, I’ve no evidence that these comments were recorded either. We did at close of meeting advise her verbally that should the funding be rejected, we would be appealing the decision, and requested details of appeals address, which she said would be within the decision letter ! She seemed to disregard that because my wife’s medical condition was controlled by drugs and nursing, there was a reduced ‘score’ in that domain. But I recall that a ‘need is a need regardless of whether it is controlled’ it is still a need.

  36. Chris-G 3 months ago

    Often there are comments on the site regarding the award of domain (scores) levels that are carried out in private. That being acceptable under the framework, it is necessary to get your domain levels recorded upon the DST or within the MDT’s notes (that only sometimes are made separately so watch for this and ask for them along with DST copies).
    Don’t worry about the exact level. Use phrases like…. ‘According to the correct use of the wording within the domain descriptors, I would consider “high” is correct at the very least’. Or words to that effect. Do not let the MDT move on to the next domain without ensuring that your domain score and the rationale for it is recorded on the DST. This is another way of getting your objection and disagreement recorded even prior to the in-private MDT meeting and subsequent ‘panel’ decision. It serves as a reminder and a shorthand reference that can be expanded upon when making appeals too.

  37. Ian Grimmett 3 months ago

    Hi.
    Thanks for the information which is very valid.
    There is one small problem.
    If, after having brought up concerns about the MDT/DST, the various organisations can, AND DO, still submit it and get it ratified without your concerns being noted/referred to even though they were fully aware.
    This is just another of the many instances where the National Framework (NF) and associated guidance and legislation are totally ignored by those involved, with apparent impunity.
    The problem with all of this is that there is no system of “punishment” in place that can come into effect against the various people involved in CHC.
    As you go through the system, the checklist, the assessment, the MDT/DST, local resolution panel, local appeal panel, Independent Review Panel, the Ombudsman and onwards there is absolutely NOTHING with any teeth, that subjects those people failing the system and not following the legislation, to any punishment.
    There can be proven and evidenced lies, alterations of documents, failing to supply documents, failing to give advice and information when required (the list goes on and on) IT DOES NOT MATTER.
    The authorities carry on regardless of any guidance and legislation, they will not admit failures in the presence of evidence, they ignore with impunity and carry on in their cavalier “we don’t give a toss” manner, no matter what.
    We are part way through a complaint relating from October 2015 – December 2015 that involves blatant and proven lying by senior staff, alteration of records, all evidenced and other matters .
    Since December 2015 to present day, we are going through another complaint regarding this period with even more evidence of non compliance and failures by the Local Authority and the CCG.
    This involves again NF not being followed and the LA adult care worker failing to comply with regulations and other matters.
    IF there was some authority in place that could hold these alleged “professionals” to account in a worthwhile way, things may improve.
    At present the does not seem to be any “punishment” for failure at all.
    It is all an absolute mess and those involved in failing to follow the process should be ashamed of themselves as should the Government Departments who MUST be aware of this mess..
    If those people put as much effort into complying with the NF etc., as they do trying to avoid it, it would be a far better situation.
    Ian G.

    • Colin Smith 3 months ago

      Ians comments ‘hit the nail on the head’ It’s all very well people posting on this site and sharing experiences, but I concure with Ian, haveing been through exactly the same experiences as all of you with my father. At the end of the day there is no accountability, it’s all been removed or ignored. That being the case they can do what they like. Incidentally the same has happend with the laws governing our Parish Councils. Over the past 5 years all accountability has been removed. Now they can do as they please and corruption is rampart. So what is happening to our democracy? In the case of the NHS maybe we should get together and consider a class action. Something has to happen as people are being robbed across the counrty.
      Soon we won’t even have the European Court of Appeal.

    • MelanieP 3 months ago

      Agree entirely. My experience – my Mum was granted Continuing Healthcare (CHC) in 2013. Since 2015 they have been trying to remove it in favour of Funded Nursing Care (FNC). Last Multidisciplinary Team (MDT) assessment took place in August 2016. No representative from Local Authority – they had been informed but I would guess that they assumed that Mum’s CHC was to continue. There were two nurse assessors – we had complained on last occasion about no Registered Mental Health Nurse (RMN) given that mental health issues are the first domains. I had alongside me my solicitor and his clinical lead who is an ex CHC assessor/RMN and we had a solicitor trainee taking full notes throughout. All the way through the assessment they kept referring to “their guidance”. In the mental health domains this guidance talked about diagnosis and specific conditions such as psychosis etc in order to meet High. My solicitor pointed out that in no way did the descriptors address this in any way. He asked for a copy of this guidance – no response. Whole assessment tried to concentrate on the amount of nursing input as a justification for recommendation of FNC, not establishing a primary health care needs. They also had no knowledge of Coughlan. They stopped payments to the nursing home after 28 days despite our notice to appeal etc. Having threatened them with proceedings they finally sent to us this “guidance” that they are using – I have it. It bears no relation to the Decision Support Tool (DST) and is deliberately designed to downgrade domains. Against this you would literally have to be almost and probably dead before you would score Severe ! Yesterday we went to Local Appeal having presented lengthy submissions – the Chair passed off Pamela Coughlan in the words of “things have moved on” and declared that she was no longer alive (I don’t think this is the case). My Mum has severe and needs in all domains except breathing the majority of which are high and in the case of skin could be argued as severe yet according to assessor her nursing care was “routine”. Yes I had made submissions and evidence but none of it was taken into account. The Chair was minded to note our concerns about the “guidance” and we were told that it was a training aid. There were three appeals being heard yesterday – everyone had boxes of files and evidence. No one would be there unless they had a case. Inevitably most of us will end up at IRP for no good reason. The landscape has changed dramatically – Coughlan is being ignored, CCG’S are moulding the DST to suit their own agenda which is entirely budget driven – CHC is being removed arbitrarily forcing people to fight again for it – many give up the fight. My solicitor has a litany of cases where a primary health care need is blindingly obvious yet CHC withdrawn and endless appeal process. I have read Coughlan, National Framework, DST to the point of seeing it in my sleep but the situation is currently corrupt. How can we use the law when it is being wilfully ignored across the country – when deals are being done between CCG’s and LA’s where notes are being altered and other guidance is in existence – maybe even within NHS England as whole. In the public eye CHC or rather the scandals accompanying it are still very much below the radar. We all have individual and painful experiences but we are fighting as individuals and CCG’s are working on a principle of Divide and carry on regardless. Unless we can come together in some sort of class/combined action I see very little hope. My solicitor commented that he had found the Ombudsman to be less than helpful. We are considering Maladministration complaint over the use of “guidance” but this will no doubt go on forever as there is really no legal sanction on these CCG’s. Apart from being one of the most stressful experiences as all on this website will testify it is now becoming one of the most depressing.

      • ian grimmett 3 months ago

        Melanie.
        At the end of the day, at our Local Appeal Panel in a month or two (an IRP will no doubt follow going on previous experiences) we will NOT become involved in ANY diversionary tactics or react to the always pleasant smiling and on occasion, condescending attitude from the panel which is always a feature.
        (When you do leave and get the negative response re CHC you feel that you have been mugged by very nice people!)
        We have absolute iron clad evidence and that is what we will progress with, stick to and insist they do the same.
        The panels that you attend are for YOUR BENEFIT and you MUST ensure that YOU drive the panel in the direction that YOU want and that the matters addressed are the matters important to you and NOT the panel.
        They do not and will not like it but, that is their problem, they need to get over themselves and get used to their opinions being challenged.
        If you can get in the position where you are in control, apart from being most satisfying, it is advantageous.
        We have already requested that we be allowed to record the Local Appeal Panel stating that, there is no law against it, it should be something that is welcomed by the panel and all present, it allows a clear and accurate record of what was said, all statements made by those present should not cause any worries to anybody and that all present should be confident in their knowledge and what they state. Not, to allow a recording is indicative of the fact that those turning the request down are being secretive about the content or, not confident in their own statement, either of which you are sure will not occur in the case of the panel you are attending so a recording would appear to be a “given”..
        When you first start with this unpleasant process, you tend to behave in a respectful manner, you soon learn that this is not a good idea.
        This whole process, sadly, has become a battle of wills and this is due entirely to the failure of the involved:-
        Hospital Trusts Initial Assessments prior to patient discharge – Multidisciplinary Team (MDT)/Decision Support Tool (DST) – CCG’s – Resolution Panels – Local Appeal Panels – Independent Review Panels and onwards to NHS England if you get that far and have not died yourself through frustration and lacking the will to live due to the continual failures of process.
        It is a long, long debilitating and stressful haul for those acting on behalf of mainly elderly, vulnerable people who, towards the end of their lives should be treated with respect and be the subject of a “PERSON CENTERED” approach which is the mantra of the National Framework, this mantra bears no resemblance whatsoever to the real life experience of the system.
        Basically and generally, if you have worked hard, taken responsibility in life for yourself you are, regarding Continuing Healthcare, on a loser to start with as that is looked on almost as a mark against you.
        It would appear that, and as a generalisation, in the most part, if you have not worked hard, have made efforts to look after yourself financially, you appear to have a distinct advantage.
        If you lack confidence, knowledge of the whole system, hard irrefutable evidence and do not feel confident in driving the panels yourself in the direction you want it to go, it is very difficult and overwhelming.
        Our experience has taught us that you have to be firm almost to the point of being rude and overtalking members of whatever panel you are at, to get your message across.
        The “Coughlan” case is continually dismissed as old and no longer applicable but it is the latest and only legislated case law there is so it has to be referred to.
        Panels just ignore the law, dismiss guidance WITHOUT being accountable or liable for punishment/disciplinary process and this is where the whole thing falls down.
        IF there were accountability within the process it may perhaps be better.
        From the countrywide discussion regarding CHC, the media attention etc., there is no way that the various government ministers are unaware of the situation but, as there is no accountability they and all those involved in the administration of the National Framework ignore all.

        • Chris-G 3 months ago

          The ‘Person Centred Approach’ is designed so that any outcome cannot be used as a legal precedent and along with patient confidentiality needs, it allows these people to limit spending expressly because the outcomes of assessments, appeals etc. are not published.
          Having two relatives needing CHC funding gave us a edge in this regard but the PCT/CCG still refused to understand that they were funding one patient with lesser needs than the other who displayed very much greater needs.
          What is outrageous is the fact that not only do they insist on this confidentiality dogma, they try to apply it to every new assessment of the same person…. They behave as if the patient’s last result or even a long history of funding, did not form an individualised precedent and that you should know nothing about it either. They hate it whenever I point out that their comments and written observations are the same as the last time funding was permitted.
          To clarify: whenever I look at the multiple DST copies going back several years, the similarities between domains that allowed funding and later, disallowed funding are very obvious yet the original person centred precedent that allowed funding is used to deny it twelve months later. The similarities are so similar that I produced a spreadsheet of almost every written observation within each domain and colour coded them for each document. So I have date xxx comment and date yyy and date zzz one after the other from each domain. Add to each comment, the funding status and you have a pretty compelling document to put in front of an IRP that has been pre-warned that a court action based upon the document and the Framework’s requirement for consistency, will be undertaken if the obvious failings and inconsistencies are not attended to.

      • Colin Smith 3 months ago

        Yes, it’s all very distressing. We are living in a world where people have learned that you don’t have to behave or follow the rules as nothing will happen to them. Once you remove penalties and accountability then it causes chaos and at the end of the day, once again the little guy loses.
        Not sure what the answer is but I’m keen to explore a class action.

      • Chris-G 3 months ago

        Melanie, Approach your lawyer with sec 92 of the health and social care act. Do this in regard to the so called guidance if it in any way conflicts with the original standing rules regulations (around sec 6). Or the Framework guidance sections that are marked PG at the back. The reason to look at this is that the law has created a criminal offence so that those that publish documents with substance sufficient to misdirect anyone, you or assessors, can be punished. That is why I always advise obtaining any and all copies of the DST and associated minutes if any. If a CCG manager changes or adds to a DST, they break the rules…….. If it disallows CHC after a MDT has recommended it, then the copy that you hold has been published with the intent to deceive. And that isnan offence.

    • Chris-G 3 months ago

      Ian, Have a look at sec 92 of the 2014 Health and social care act. If Information is specified in law as necessary in a matter and it is altered or otherwise presented falsely then the people that did have committed a criminal offence.
      Have a look and break the long wordy-ness of the law up and see if it fits what you think is happening.
      The last time I looked, a Magistrates Court action to ‘lay an information’ before them was around £500.00. Or you could try to get a hard pressed Police Fraud Unit to get their heads around matters (doubtful, I’ve tried even after they stated that it looked like Forgery and Fraud they just let it slip away cos they were always busy on other matters).
      In short, you could begin an action yourself that has fines (magistrates) and imprisonment (at crown court) as remedies for the offences. However, the Director Of Public Prosecutions can stop the case, apparently.

      • ian grimmett 3 months ago

        Chris.
        Thanks for that.

      • Ian Grimmett 3 months ago

        Chris, going through it now.

        It is important to read it from the VERY BEGINNING as there are provisos as to who it applies and under what circumstance.
        It does not necessarily appear to be applicable to all who are going through this dreadful CHC process.

        • Chris-G 3 months ago

          Ian, I take the view that if I had lied to obtain funding or created false needs records the it is beyond doubt that I would be facing sanctions in some way. Why not them?

          • Ian Grimmett 3 months ago

            Because NOBODY holds them to account or is interested in doing so.

  38. John Petters 3 months ago

    Very interesting. What happens, I wonder, when there is no CCG Coordinator and only one nurse assessor? I have recorded all MDT and appeal meetings. It is easily done on most mobile phones and enables me to quote verbatim what was raised at the meetings. For example, I have an appeal tomorrow and realsed there was no checklist supplied, but my recording reveals one was completed. It seems to have been destroyed. Tomorrow could be an interesting day!

    • Chris-G 3 months ago

      John. Was there a council assessor on the MDT? If not then it was not a MULTI – Disciplinary – TEAM. Without a team it was not a lawful assessment at all.

    • John Petters 3 months ago

      I’ve just been told by the CCG that they only “should” have a coordinator and it is not obligatory. Also that checklists do not form part of a person’s medical records.

      • Chris-G 3 months ago

        Here is what the Standing Rules Regulations (law) states . ‘(4) If a relevant body wishes to use an initial screening process to decide whether to undertake an assessment of a person’s eligibility for NHS Continuing Healthcare it must (a) complete and use the NHS Continuing Healthcare Checklist issued by the Secretary of State and dated 28th November 2012(a) to inform that decision; (b) inform that person (or someone lawfully acting on that person’s behalf) in writing of the decision as to whether to carry out an assessment of that person’s eligibility for NHS Continuing Healthcare; and (c) make a record of that decision.’ …….. I would infer that making a record of a decision might well require keeping the source materiel used to make that decision. It is also required as part of a hospital discharge. Why are some patient’s hospital records subject to destruction and not others?

        • John Petters 3 months ago

          Chris, routinely any notes at MDT/DSTs have been destroyed by my CCG. In my case, the CCG have lost / destroyed the Checklist fr the appeal I atteneded yesterday. My argument is that this forms part of my mother’s medical records and there is a statutory time that these must be kept.
          At the CCG Appeal panel yesterday, I forcefully put these points forward. The Ratification document, which was signed and dated 6th July 16, but according to the “word ” properties audit trail was not created unti 11th July, stated, “The Social Work members of the MDT dispute the decision to score this domain as a Low. The Adult is non-concordant with her medication regime (this was discussed in the Care Act 2014 assessment completed by the Local Authority-“.
          I asked the appeal panel chairman about this assessment and he was clear that is would have to be a wriiten document separate from the DST.
          The Council will only deal with me through its solicitor and he said, “You are assuming that the “assessment” was a written one. We do not have such a document.

          We would draw your attention to the CHC checklist page 19 in the Evidence column where it states that Mrs X could not explain her medications.”

          The checklist to which he referred was a subsequent checklist, so this was an incorrect answer. It appears there is no assessment. That leads me to your observation about Section 92 or the Care Act 2014. I appear not only to have a document, signed and dated some dayes before it was created, but also one that contains false information!
          I’ve made allegation of confilict of interest against senior staff at the CCG – its CHC budget was £1.6 million overspent in 2013 and a document from the person responsible for CHC states action needed to be taken. That person is also the person that sets and implements the budget. The Accountable Officer is sufficiently rattled, after I alleged possible misconduct in public office, that he has ordered a peer review. He wont’ tell me who is doing the reviewing. At least the panel chariman promised to provide that information yesterday, besides which I’ve made an SAR.

          • Chris-G 3 months ago

            John. How can the CCG represent matters at Local Appeal or subsequent Independent Review Panel (IRP) or at the Ombudsman if they have no recorded information?
            For that matter how do they notify the council of their decisions without such data? How would a council dispute matters (had they the nerve!).
            I asked for and received a memory stick and hard copies too of DST and minutes of my mum’s assessment. From Metadata (buried within the documents on the memory stick), I saw that the CCG assessor was still editing the Decision Support Tool (DST) on the run up to local appeal and then again on the run up to IRP. In short, the file had been opened and edited 35 times after it had been filed and presented to the CCG for ratification. The minutes of the assessment were edited even more savagely. Back to your case: As for the Council’s Multidisciplinary Team (MDT) member’s disagreement with domain scores; the law requires such disagreement to be recorded upon the DST. Then if the disagreement cannot be got around, then the higher of the argued scores should be given as the agreed score again in the DST. The dispute should also be noted. Non of this is the business of an eligibility panel of even the CCG. Why? Because no one can alter or challenge a DST and disagree with the MDT’s recommendation unless they clearly articulate ‘exceptional circumstances’.
            As for overspend, I have internet published minutes of our local CCG that had spent all of the budget within 6 months. The minutes also underlined what was going to be done to prevent further overspend…… I don’t need to tell you that an increase in numbers funded was considered acceptable.

  39. Lee Harris 3 months ago

    If there is no printer or photcopier available. Photograph the assessment using your phone, I did

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