Flawed: NHS Continuing Healthcare Independent Review Panels

Flawed: NHS Continuing Healthcare Independent Review Panels

Flawed: NHS Continuing Healthcare Independent Review PanelsFurther insights into lack of impartiality: flawed NHS Continuing Healthcare Independent Review Panels

We were recently contacted by Peter, who previously worked as Chair of an NHS Continuing Healthcare appeal panel.

(We’ve changed his name here.)

Peter told us about a new practice by his own CCG that raises even more concerns about the fairness of NHS Continuing Healthcare appeals.

He recently had to go through the NHS Continuing Healthcare funding assessment process personally on behalf of a relative. His relative was fully funded for a long time through Continuing Healthcare, without any problem, but at the last assessment the assessor said that his relative no longer qualified.

Peter advised the CCG that he intended to appeal, and requested an NHS Continuing Healthcare Independent Review Panel (IRP) hearing.

He then received a telephone call stating that the appeal would be held locally – and he was surprised when the original assessor attended and stated that she would be handling the appeal herself. It was hardly independent. Peter wondered if the CCG hoped this would stop the family proceeding further.

The assessor stated that she had reviewed the situation and had not altered her opinion about removing funding from Peter’s relative. She also advised that it was not worth taking things any further.

Peter wrote to the Chair of the CCG expressing his concern at this ‘IRP’ not being independent. Had he not known the proper appeal procedure, it’s possible that he and the family would have had to simply accept the decision.

He received an unhelpful response, but the family was subsequently invited to a new review. This was held at the CCG’s offices and was dealt with by the manager of the original assessor. The manager discussed the case and confirmed the original decision would stand, i.e. funding would be removed.

Again, Peter suspected the CCG hoped this would stop them going any further.

However, Peter informed the manager that the family was unhappy and would continue with the appeal. His relative needed full 24-hour care at home, and now her health had deteriorated further.

An appeal of the funding decision was arranged, but this was postponed several times. The reason given was that “there was not a Chair available”.

The family wanted answers to their questions about the lack of independence in all this. They were informed that the CCG had altered its procedures and, from now on, appeals would be dealt with by an in-house member of staff – as had happened with Peter’s relative.

Unfortunately, Peter’s relative died, and he decided not to take the appeal any further. However, it left him wondering how many other families have just accepted this supposed ‘new process’ without question.

It’s not unusual for a senior member of staff to initially review the funding situation – but it’s deeply concerning that it involved the same person who carried out the actual assessment because there was a complete lack of impartiality.

On account of his background, Peter is aware that CCGs do not like appeals, as these are both costly and take up much time. It would however be interesting to know how many families are coming up against the same problem when requesting an IRP and how widespread this ‘change in procedure’ might be.

Have you been in a similar situation? Did you actually get to an NHS Continuing Healthcare Independent Review Panels outside your local area – and was the Chair independent?

We’re interested to hear whether other families have also experienced such flawed NHS Continuing Healthcare Independent Review Panels. (Please avoid mentioning any specific names of CCGs or local areas.)

Read more on NHS Continuing Healthcare Independent Review Panels

Read more on NHS Continuing Healthcare appeals

281 Comments

  1. Glynis Evans 3 months ago

    That’s disgraceful Judy – they get worse. We sent our appeal documents to Independent Review Panel (not independent as you say – this one is in adjoining council). They have denied receiving them despite having a signature from their receptionist! We have it in writing from home, GP & hospital that my mother-in-law was receiving palliative care & an advanced end of life care plane was in place, yet local appeal panel stated that “there was no end of life care plan & she was not receiving palliative care”. It is the most corrupt system I have ever come across, with extortionately over paid staff who are completely unprofessional, yet it seems nothing can be done.

  2. Sheila 6 months ago

    Hello we have appealed to the Independent Review Panel and they have announced their decision that they agree with the review panels decision that mother was not eligible for NHS Continuing Healthcare, however we were not invited to attend at the appeal and the decision has been made behind closed doors. Should we have been there to argue our case?? We now have to consider an appeal to the Ombudsman. Has anyone had any luck here?

    • Glynis Evans 6 months ago

      Hello Sheila – According to page 130 National Framework Guidelines you should have been invited to attend. I would definitely go to Ombudsman on that point alone. This is what it says on page 130 20. “An individual may have a representative present to speak on his or her behalf if they so choose, or if they are unable to, or have difficulty in presenting their own views. This role may be undertaken by a relative or carer or advocate acting on the individual’s behalf. The IRP should be satisfied that any person acting on behalf of the individual accurately represents their views, and that the representative’s interests or wishes do not conflict with those of the individual. The IRP should respect confidentiality at all times.” https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/213137/National-Framework-for-NHS-CHC-NHS-FNC-Nov-2012.pdf

      • Sheila 6 months ago

        Hello Glynis, thank you for your reply which of course is right, however I have read the IRP letter again and it appears I was mistaken, they are not going to hold an IRP the letter actually just rejected our claim under Annex E Paragraph 14 and goes no to say that it fully supports the original decision, basically as medical care could be provided by Doctors visiting my late mothers care home all the rest of the care is regarded as social care. Unbelievable my poor mum could do nothing for herself, she was doubly incontinent, had Alzheimer’s and did not recognise anyone or know time of day or night or who or where she was, had to be fed by hand, medicated, dressed, moved by hoists, had severe bed sores, chronic kidney disease, hypertensive disease, she was just a shell unable to communicate her needs or do anything at all for herself. I don’t really hold much hope out for the appeal to the Ombudsman as I suspect they are all just for not paying out any money from the creaking NHS Budget.

        • Glynis Evans 6 months ago

          That’s terrible Sheila. My mum in law had exactly the same illnesses plus advanced heart failure, was malnourished, epileptic & was diagnosed as end of life. From what you have said we don’t stand much chance either. Our local appeal is tomorrow & we should hopefully have an advocate attending on our behalf as we live 250 miles away. Surely your mum was having round the clock care which was being given or overseen by a registered nurse. would it be worth contacting them to ask how much worse she would have had to have been in each. They have to give clear & evidenced written conclusions. If this has not been done, I would ask them for a detailed rationale (relating to each specific domain if you can get it) detailing as to why they say she doesn’t have a primary health need. To say that medical care could be given by GP visiting home is utter nonsense. It doesn’t matter who is giving the care. I would definitely ask for a much more detailed rationale, telling them that you need this to refer the matter to the ombudsman.

        • Judy 6 months ago

          NHS England are not able to hold IRPs due to lack of Chairs needed on the panel. Believe that they currently cannot provide any dates for these panel meetings so it seems they are being “screened out” as a paper exercise first so again to deter anyone insisting they proceed further. Not sure how much the Ombudsman can assist since they will simply send it back to the CCG to look at again and no doubt they will come back to same conclusion. No accountability and they know only further recourse is Court action. I always believe you should be able to persue these matters personally but maybe a solicitor would make them think again. It seemed to make a difference in our case but we couldn’t afford the continuing fees so are persuing ourselves. Further update will follow when we know the final decision. Interestingly in order to get NHS Continuing Healthcare (CHC) through the process you have to meet the very high criteria under National Framework yet going to Court you would just prove a primary health need in accordance with Coughlan, a case it seems totally ignored when making CHC decisions.

          • Glynis Evans 6 months ago

            Thank you for information Judy. Doesn’t give much hope to us who can’t afford a solicitor. My mother in law was diagnosed end of life, palliative care just before the Decision Support Tool & passed away a few months later. She needed 24 hour nursing care & they said she didn’t have a primary health need. Local Appeal Panel was last week, but will be a month before we receive their decision. The 1st panel (ratification panel) who verified decision actually downgraded one of the domains – which they are not allowed to do – we put in an official complaint & it was immediately upgraded back up to high. They will try every trick in the book & more…. They are unprofessional & seem to lack any conscience or humanity – it is all about money…

          • Andrew 6 months ago

            Hello Judy

            As you know the Public Accounts Committee head hearings at the back end of last year about NHS Continuing Healthcare. NHS England was asked to provide by April 2018 the Public Accounts Committee with certain assurances about the how the system is being administered so that those who are entitled are receiving NHS CHC.

            If you are aware of a reason why the system isn’t working properly, or at all, are you able to email the Public Accounts Committee and draw what you have said to their attention?

          • Judy 6 months ago

            It was a face to face conversation with 2nd hand information so no proof of it and I can’t name the source of it on this site anyway. What assurances have the Public Accounts Committee have so far then from the NHS as the deadline is nearing? And Glynis we don’t have a solicitor anymore as couldn’t afford it . Please keep going, we are and shall update with anything new. Share the result of your Local appeal as the more we all share the better informed we are including ” every trick ” as you call it.Best of luck.

          • Andrew 6 months ago

            Thanks for your comment Judy

            I am not suggesting that you would name the individual(s) who made the comment. It is perfectly possible to anonymise whoever provided this anecdotal evidence. However, if you were told that there aren’t enough NHS England panel chairs to administer this process, I would have thought that is something our elected representatives might find useful to know and think about.

            Even our court system has to rely on second or third hand hearsay sometimes to try to get to the truth. It isn’t the strongest or best evidence, but it is evidence nevertheless.

            If no one tells the Public Accounts Committee, who are at least looking into NHS Continuing Healthcare, about failings in the system, there won’t be any impetus from Parliament to improve the system because they will be led to believe by those running the system that everything is OK with the way the system is being administered.

          • Jenette 3 months ago

            Further update. IRP (of sorts not independent) .The assessor was rude, clearly had come with a plan of meeting and we were met with outbursts and shouting during the meeting when that “plan” failed because we had come with evidence they thought we didn’t have. Even shouting “I’m the professional here” hardly proving the case by their conduct. Wasted time by trying to use a comparable case with no similar needs as a boundary for eligibility. Agreed complexity, unpredictability but refused intensity despite 40+ health care plans and barely one social need, then later said nursing needs were basic, contradicting their agreement earlier that needs were complex. What a farce. We were made to feel like kids having revised for an exam, getting all the right answers but still marked as wrong!! AND being told off by the teacher. Having met the criteria for “should have” funding they then implied they can add their professional judgement to the decision. Of course the earlier decision to deny funding is based solely on the criteria not being met. Using the Guidelines to suit? Court is now our next step if denied NHS Continuing Healthcare (decision awaited) as having got to the top of criteria there is very little margin for them to deny funding and they did not consider whether Coughlan compliant. Thinking though about complaining of conduct issues to Ombudsman as a recording was allowed.

  3. Paul No 2 7 months ago

    Further to my first reply regarding the families second Independent Review Panel (IRP) held in 2018, which covered a review period starting from 2006.

    I specifically informed the IRP panel that the term “Primary Health need” was not created until October of 2007. That the local Strategic Health Authority criteria dated April 2003, was in place. Which I showed them a copy of.
    The opening “Background” section, for this document even refers to the Coughlan case to clarify the responsibilities of the NHS and Social Services.( Which I previously mentioned in my first reply, that the panel would ignore and use the National Framework.)
    The only section that refers to the Eligibility Criteria for NHS Continuing Healthcare, is a table , which states that it will be based on the following key issues ( with this particular item describing our relative with Alzheimer’s in a nutshell ):-
    “ The individual has a deteriorating or unstable medical, physical or mental health condition and requires regular supervision by a member of the NHS Multi-Disciplinary Team such as the consultant, palliative care, therapy or other NHS member of the team”.
    Our relative had to have their medication monitored and adjusted by their psychiatric consultant, among the nursing care in the EMI section. We even have letters from their GP stating that 24×7 care is the best place for them, in a safe environment to meet their health and care needs.The EMI care home had over 28 various reports such as “Collaborative Care”, hourly, daily,,weekly,monthly and annual reports, documented for the patient, which I would classify as “nursing care” alone.

    The question is then; How will the IRP assess them, if all they know is the National Framework “Primary Health need”, which is not applicable, but only after October 2007?

    Second Item: Could someone please post a link to the important information regarding the “S107” ( Standing Rules?) which I keep coming across.
    Thank you

  4. Paul 7 months ago

    We had our Independent Review Panel (IRP) in 2018. At the end I requested that once the panel assessed the 12 domains, would they apply the Coughlan test? The chairperson said no. Only the National Framework. It was also clarified by a panel member, that the Coughlan case was in 1999, and only for Pamela Coughlan, and not relevant – verbatim. Even though I stated that the Coughlan case was law. This is the attitude we are up against. More importantly, how are these IRP panel member getting trained!

    • Glynis Evans 7 months ago

      So we have no chance at all of fighting them. Just been on Care to Be Different’s Facebook page & it appears that Independent Review Panel appeals, that should be taking around 3 months, are taking 1 to 3 years on average before they meet for the appeal. We are scuppered all ways :o(

      • Paul 7 months ago

        Not scuppered but delayed – complain to the Parliamentary & Health Service Ombudsman now that procedures (per S107 & Standing Rules) have not been followed; this is all about delay as the ultimate decision will be eligible at the Ombudsman as there are identical cases that have gone before.

        • Judy 7 months ago

          Please no one give in. Four years later and we are going to Independent Review Panel (IRP) but being delayed because they are withholding the evidence they used for the Decision Support Tool which we are entitled to see. We are not waiting a further year- 3 years, totally unreasonable as majority of our complaints are process failure. We see entitled now to bypass the IRP to Ombudsman though have no confidence even then about any decision, so may take our chances in Court. They clearly want to wear you out so you give up. We are still fighting even to Court if necessary.

          • Glynis Evans 7 months ago

            So sorry to hear of all the problems Judy. Unfortunately we have had to give up as it has caused us so much stress that it has left me seriously ill. I wish you all the luck in the world with your fight for justice x

          • Paul 7 months ago

            Judy would this information by any chance be an assessment carried out at the request of a company that you thought were just collating information ??

          • Judy 7 months ago

            Sorry Paul not sure what you are asking.The “family file” we have received for the Independent Review Panel has been carefully cherry picked with evidence THEY want the Chair to see, no-one has asked us what evidence we want included. The file was put together by the Multidisciplinary Team decision maker, conflict of interest or what because they have every reason to ensure the file was incomplete. Also we don’t know if the family file is the same as the Chairs file? We know it has been cherry-picked because we have most of the same information, we just wanted to know whether they had any evidence we don’t have.

          • Paul 7 months ago

            Judy if there is evidence you know is missing get a Subject Access Request asap – in that there will be plenty you don’t know about – that will include emails meetings and communications.

    • Judy 6 months ago

      So the result of the Subject Access Request (SAR) requested – so we could at least have the same evidence they had compiling the Decision Support Tool – was we got a copy of OUR evidence back!! Of course we weren’t charged for it, how could they? Apparently conveniently they have sent THEIR evidence already to the NHS for the Independent Review Panel without copies, yet have kept ours which appears to be what they are saying. There were no internal emails/meetings etc included. Now we have asked the NHS to complete the SAR as they are the data controllers and ultimately legally responsible the SAR is completed in full. Will they??As I have said before this is quickly heading to a Court case as they are constantly abusing the process and no-one is accountable. Incidently as a past loss adjuster, if I had behaved in this way my company would have been sued within 6 months and I would be legally accountable for non compliance with the SAR.

      • Richard 1 month ago

        From Richard: I’m interested to hear how the dpa part has progressed a familiar experience with our CCG who keep no notes and almost never write e mail apparently ! Did you consider the Information commisioner?

  5. Katrina 8 months ago

    in reply to Glynis Evans
    This may help, It’s all about the needs of Pamela Coughlan written in the format of a Decision Support Tool.
    https://www.spinal.co.uk/wp-content/uploads/2015/08/Summary_of_Pamela_Coughlans_Care_Needs_For_Comparison.pdf

    • Paul 8 months ago

      The only things I would say about this is as follows
      1) Do not try to ‘prove’ your loved one qualifies as that is not ‘possible’ Always tackle them on PROCESS – make sure they have guidelines in place to objectively assess against the needs of Pam Coughlan.
      2) Free Nursing Care is a right in this country – it is therefore incumbent on the CCG to prove that why your loved one is excluded

      • Chris-G 8 months ago

        I agree with this wholeheartedly. They always seem to break the law and the rules. I have always started with the law breaches.
        Everyone needs to understand that this is a set of hoops through which we all have to jump. The end result even if it involves a court is where this leads. It is doubtful that anyone wins whilst only arguing about diagnoses, illnesses, well met needs, and domain levels. Each of these could be at any level dependant upon who makes the assessment and decision.
        It is the law and the rules that will best assist claimants for NHS Continuing Healthcare. However, the bods involved have no power to act, even in defence of themselves. Nor do many have any legal knowledge. Ergo they cannot comprehend and likely do not even read the appeals and complaints with a legal eye.
        So one has to go through it (and we always take as long as possible), and then at Independent Review Panel (IRP) we impress on the chair that we will want our legal challenges ignored to date, assessed by a real judge in a real court if the IRP cannot comprehend the laws being broken.
        The chair is a gatekeeper to a degree… They are there to assess the risk of the case going to a court and rerunning the Coughlan decision and/or creating new law….. This is the entire reason for the nasty process… It is designed to make you give up….. So unless you really have to…..don’t.

        • Paul 8 months ago

          If the policies procedures and guidelines do not comply with s107 Grogan then you have to option to apply straight to the Ombudsman – No assessment can be Coughlan Compliant otherwise…..
          Its high time that the system is used against them….

        • Jenine 8 months ago

          Thank you Chris G, Paul definitely go to take what you say to the Independent Review Panel (IRP) with me. Perhaps copy and paste onto large lettering may do the trick. Problem is we can’t get to IRP yet as CCG have failed to supply us with all the evidence they used compiling Decision Support Tool. Believe this is failure of the IRP fair process. Process failures all round really.

          • Paul 8 months ago

            Jenine – I would make a Subject access Request to the CCG now and this is the wording

            I write to make a subject access request under the Data Protection Act 1998 for any and all personal information you hold about xxxxxxxxxxxxx.

            I will require all internal letters, memorandums, phone records, etc. This disclosure should include all correspondence with other parts of the NHS, and with other statutory authorities. I also require sight of any correspondence requesting advice received from external advisors to the CCG and the response received.

            Do it ASAP it takes 40 calendar days to receive – if (as almost certainly ) they have (let’s say) changed deleted information you should see it in that

          • Jenine 8 months ago

            Wish we could Paul, but mum is deceased and unfortunately we cannot ask for a Subject Access Request (SAR).

            “Personal data means data which relate to a living individual who can be identified –” Quote taken from Information Commissioners Office (ICO) website.

          • Paul 8 months ago

            Jenine you absolutely can – I’ve just done it !! Call the CCG and ask them where you direct it and send the wording I gave you – which CCG is it ?

          • Andrew 8 months ago

            Hello Jenine

            The individual(s) who are administering the estate of your deceased loved one can write to CCGs and other relevant medical organisations (for example a GP practice or hospital) under the Access To Medical Records Act 1990. The individual(s) will need to identify themselves by providing a copy of the grant of probate (assuming the deceased loved one left a will) or letters of administration (if the deceased loved one died without making a will).

            Alternatively, under The Access To Medical Records Act 1990 any person (for example a relative of a deceased loved one) who can prove that they may have a claim arising out of the deceased loved one’s estate. In this case the relative is only entitled to receive medical records that are “relevant” to the claim. It seems that someone asking for copies of medical records on this ground will need to prove their connection with the deceased, and the claim.

            Clearly it is easier to access medical records of a deceased person if you can prove you are administering a deceased loved one’s estate as a personal representative either as executor of their will (if there is a valid will) or as administrator following the grant of letters of administration.

            The letter you would right would be similar to the letter suggested by Paul. But instead of referring to a subject access request, it is necessary to refer to the Access to Medical Records Act 1990 and supply the necessary proof.

            You are correct the Information Commissioner’s Office does not resolve disputes arising under the Access to Medical Records Act 1990.

            Hope this helps.

          • Andrew 8 months ago

            Forgive me, I said that any person who can prove they may have a claim arising out of a deceased person’s estate can apply for access to the deceased person’s medical records.
            I mistyped. The person must prove that they may have a claim arising out of the deceased person’s death. My understanding is that this should allow an appropriate relative who seeks to recover care fees that were paid wrongly by the deceased, or by someone else on the deceased’s behalf, during the deceased’s lifetime to obtain “relevant” medical records of the deceased.

          • Paul 8 months ago

            Also want the Subject Access Request as you will require both medical records AND what the CCG got up to…… call the CCG complaints team and tell them what you want and they will tell you what to do – they will be helpful unlike the Continuing Healthcare team….

          • Paul 8 months ago

            I should also say that time the Subject Access Request to include the period of your dialogue with the CCG…….. 😉

          • Jenine 8 months ago

            Thank you all, very interesting and useful. I am not allowed to give details of the CCG involved and I also work for the NHS (a different CCG and certainly not in a Continuing Healthcare (CHC) role, I am front line, where the care is delivered. There is nothing caring about the CHC process I may add.

    • Glynis Evans 8 months ago

      Thank you Katrina x

    • Chris-G 8 months ago

      Excellent resource that compliments and adds weight to the ADASS Commentary in regard to the fledgling CHC process and it’s links to the Coughlan case.
      https://www.adass.org.uk/adassmedia/stories/Publications/Guidance/commentary_oct07.pdf

  6. Gillian Rausse 8 months ago

    My mother was Fast Tracked in July and assessed in September. We were advised she no longer met the criteria for full funding even though she had deteriorated further. There was a Nurse Assessor at the meeting and the Care Home Manager as well as me. I was under the impression that the Care Home Manager was part of the Multidisciplinary Team (MDT) and so was she. After the meeting the Nurse Assessor downgraded some of the scores unilaterally without giving us the chance to make comments on the Decision Support Tool (DST) before it went to panel. Can she do this without discussion with the other member of the MDT? The Care Home Manager is not mentioned anywhere on the DST. If she was not deemed a member then is it possible for there to be only one member of the TEAM? Is this legal – it is not recommended in the National Framework which states there should be at least two. I would be grateful for any comments.

    • Paul 8 months ago

      Was there any improvement ? If not then NO absolutely not – it’s a stunt they pull repeatedly – it’s illegal – they often try on the basis that the needs are ‘stable’.

      • Gillian Rausse 8 months ago

        Hi Paul, No, there has been no improvement at all – she is deteriorating all the time. Thanks for your help and I will be using it in my appeal next week.

        • Paul 8 months ago

          They try this stunt all the time – a managed need is still a need – if there is no improvement then this answers the question. They will try to say that a deterioration means easier to manage – always argue on PROCESS first – they have by law to have an objective test to compare needs v Coughlan & Grogan – they won’t have and they probably won’t be aware they have to

          • Gillian Rausse 8 months ago

            Thanks Paul. In this case they will not be able to say deterioration means easier to manage. She will no longer take medication, which they are now trying to give covertly in food and drink. However, she eats very little and only take tiny sips of liquids, so is not getting the medication she needs. She has no mobility at all, but due to her lack of capacity and increased anxiety she tries to stand and also get out of bed. She has no idea of risk and is a high falls risk. She shouts for help almost all night. So, the risks in at least three domains have increased quite dramatically.

          • Chris-G 8 months ago

            Gillian if the needs are in the form of a decline then ask the home/GP to fast track. Then the CCG will have to accept that and carry out a NHS Continuing Healthcare assessment afterwards to validate or to deny the funding need…… Then repeat at every serious decline.

    • Glynis Evans 8 months ago

      Hi Gillian, there should really be someone from the local authority, otherwise how can the LA possibly decide that your mother legally comes under their remit & therefore meaning that she has to be means tested. Was the Nurse assessor also the coordinator, if so then that is in contravention of guidelines as she has to be “impartial” to the team. As Paul says, if she has not improved, then she cannot be downgraded. We had similar & we put in a complaint & the domain was immediately graded back up to the original one. Query everything that you feel is not right.

      • Paul 8 months ago

        No – must be Care Act 2014

      • Gillian Rausse 8 months ago

        Hi Glynis, Yes, the Nurse Assessor was also the co-ordinator. Thanks for the information. I will do a bit more homework and use you information in my appeal next week. Mum has deteriorated so much since the assessment in September that I believe she should be graded Severe now rather than the High that was originally agreed (and subsequently downgraded by the Nurse Assessor) I am very grateful for your help and also Paul’s. It is so good to know there are people out there who are going through this awful procedure as well as the emotional stress of having someone you love so ill.

        • Glynis Evans 8 months ago

          You’re very welcome. This is the document that details about the role of the coordinator (5.1) & states “Being an impartial resource to the Multidisciplinary Team (MDT) and ensuring that it makes a clearly reasoned recommendation which is sent to the CCG in good time” https://www.england.nhs.uk/wp-content/uploads/2015/04/guide-hlth-socl-care-practnrs.pdf
          You cannot possibly be an “impartial” resource to the MDT team if you are actually part of that team.

          • Gillian Rausse 8 months ago

            Thanks again Glynis. I have made a note of this and it will be going in my notes for next week.

  7. Roger Wheeler 8 months ago

    Roger
    Very briefly, at the time of the Multidisciplinary Team assessment for Continuing Health Care my sister in law was in the later stages of vascular dementia, was doubly incontinent, completely unable to weight bear, was not aware that she was in hospital as a result of a fall (one of many documented falls by ambulance call out), unable to make any meaningful decision, very little food or liquid leading to extreme weight loss necessitating the need of food supplements.
    NHS Continuing Healthcare was refused and instead NHS and Local Authority (LA) collaborated by LA accepting social care and NHS funding all health care. It seems to me that this split is an attempt by NHS to offload care home fees to the patient. This has resulted in my sister in law being means tested by LA and having to pay approx. 85% care home fees.
    Am I right or wrong in interpreting the law as being an either or decision (either totally NHS or totally Social Services) depending on the level of medical needs?
    She was discharged from hospital to a care home and about four weeks later (first week of Jan ’18) was readmitted to hospital in a complete state of unconsciousness. She is now unable to eat or drink and has been placed on end of life palliative care plan. The hospital today 22/01/18 has discharged her back to the care home whilst suffering from extreme swelling to one side of her face and also other areas. On arrival at the care home a district nurse suspected Sepsis examined her and is consulting regarding.
    Today by post from the Chair of Independent Review Panel – the process was a complete paperwork exercise – stating the following:
    “There was no requirement for rapid changes to the care and care plans. Overall then, the Chair felt that no primary heath need existed”
    I have quoted all relevant case law and ombudsman rulings. I’ve pointed out the ‘incidental and ancillary’ limits of Social Services regarding health care involvement.
    I really don’t understand why NHS Wales are refusing Continuing Healthcare.
    Comments welcome

    • Paul 8 months ago

      The National Framework is a defence tool for the NHS – it does NOT alter the law Ask the CCG for its policies proceedures and Guidelines for CHC – If they do not have criteria as per the directive from the S of State then their procedures are unlawful and contravene Art 6 of the HRA – such conditions and nursing needs have been tested in the highest court in this country

      • Glynis Evans 8 months ago

        It is all very confusing. The Dept of Health document just refers to Grogan rather than Coughlan & just asks them to review their criteria eligibility. Is there a link to the Secretary of State directive please? Sorry to ask, but I have to be sure of my facts when I go back to them. I really do appreciate all your most kind help. Thank you everyone

      • Glynis Evans 7 months ago

        Hi Paul – I sent a letter to Chairman of local CCG as you advised with regards to being Coughlan compliant & processes in place to ensure this. This is their official reply:
        “I am aware that 2 of your main concerns relate to comparing Mrs XXXXX’ needs with Pamela Coughlan & the previous requirement for local criteria to be established.
        Please be aware that the framework replaced the need or local criteria with national criteria, so that individuals are considered on an equal basis by applying the primary health needs test taking into account the 4 key indicators – nature, complexity, intensity & unpredictability of the health needs.”

    • Chris-G 8 months ago

      Roger, Sorry to hear all this. Wales is a little different but it is likely that There was not an Independent Review, but a local review carried out by the same people that made the decision. Then again have you asked the GP/Nursing Home/ District Nurse for ‘Fast Track’? The Welsh NHS Continuing Healthcare (CHC) Framework ……. http://www.wales.nhs.uk/sitesplus/documents/866/Continuing%20NHS%20Healthcare%20The%20National%20Framework%20for%20Implementation%20in%20Wales%202014.pdf
      states:-
      ‘In some cases much speedier decisions should be taken in the individual’s best interests: for example in terminal illness, or where there has been a catastrophic event from the point of which it is clear that the individual has a primary health need (see ‘Fast Track Assessments’). ‘
      Or at another page:-
      ‘3.84 Occasionally, individuals with a rapidly deteriorating condition who may be entering a terminal phase will require ‘Fast Tracking’ for immediate provision of CHC so that they can be supported in their preferred place of care without waiting for the full CHC eligibility process to be completed. In such cases LHBs should aim to complete the process within two days. There will also be cases, other than end of life care e.g. a catastrophic event where professional judgement indicates that the individual has evidently developed a primary health need, where LHBs should also consider applying Fast Track assessment.’
      Please feel free to ignore the word…… ‘occasionally’ above…. Anyone in a terminal phase should be fast tracked upon or during their final discharge from hospital.

      Argue about the previous period later if you wish…. Get Fast Track now.

  8. Jenine 8 months ago

    Assessors need to be retrained then as National Framework (the Guideline !) says it is to be Coughlan compliant so to abide by the principles of the National Framework is just that. Definition of compliant – “meeting or in accordance with rules or standards: ” So far pre-Independent Review Panel, we have received a flimsy folder with some chosen evidence, hardly a year’s worth of care notes, plans etc. It’s not just the original assessor, all staff involved in the process need retraining to ensure it is a fair appeals process. Definition of appeal – “an application to a higher Court for a decision to be reversed” The “higher Court” here (NHS England) are as flawed as the CCG, and apart from the Chair (who is still paid by the NH ) no-one else will be independent, probably all employed by the NHS. Now that would not be the case in a real court.

    • Paul 8 months ago

      Assessors work in a culture that comes from Government down through NHS England and on to the CCGs that is set up to mislead by deliberate omission of what Coughlan Compliancy actually means – S107 Grogan is quite clear & backed by a directive from the Secretary of State. Effectively ‘Coughlan’ has been in front of the highest court in this country twice – The National Framework is a guidance document only & is described as SHOULD be used – that line passes legal liability on to the CCGs who must comply with the law – read the last line of AppB – Coughlan & Grogan are the stated cases – There are Ombudsman ‘rulings’ that cover most cases & yet CCGs repeatedly act as judge and jury deciding not to give NHS Continuing Healthcare to people that can be objectively seen to qualify against these cases – Fight all cases on PROCESS first and foremost – If the Guidelines are not there then any part of the assessment process is fatally flawed

      • Glynis Evans 8 months ago

        Thank you Paul – But I am unable to find any link to Grogan case where it states that each CCG must have their own criteria in place that to be able to compare against Coughlan case.

          • Glynis Evans 8 months ago

            This is what they have said when I challenged them about local criteria & I don’t know how to respond – I have to do it in a few parts due word restriction – Part 2
            “Following the publication of a report by the House of Commons Select Committee on Health in 2005 and further critical comment from the NHS Ombudsman, the Secretary of State announced that a National Framework would be introduced so that there would be only one set of national criteria which would be applied universally and equally across the country, Its main aim to was to overcome the so called “post code lottery” with individuals being subject to different criteria and policies dependent on where they lived.
            “PCTs (now CCGs) were advised not to attempt to re-write, revise or re-word the national criteria in order to avoid local interpretation of national policy guidance. Furthermore, the Department of Health undertook to ensure that the criteria outlined in the National Framework was compliant with the law outlined in the various the legal judgments (e.g. Coughlan, Grogan etc).
            “You have been incorrectly advised that CCGs are required to produce local criteria. As outlined above, this was the case but this requirement has long since been superseded by the publication of national criteria and introduced ( following confirmation of legal compliance) in September 2007. Further revisions of the framework were introduced in 2009 and 2012. However, these did not fundamentally change the policy or criteria and were designed to give greater detail and clarity in the light of experience.
            “All of our assessors are trained on the national criteria and this includes an understanding of Coughlan and other cases. We do not attempt to apply any added local variation. The primary health needs test which emerged from the Coughlan judgment is applied as set out in the framework as are the principles of Grogan relating to the limits of the responsibilities of local authorities in the provision of nursing care.”

        • Paul 8 months ago

          In simple terms Grogan cements Coughlan into place is backed up by the directive from Patricia Hewitt and says that a Primary Care Trust – now CCG – must have criteria within its Policies Procedures and guidelines to ensure that it does not set criteria that would mean a higher bar than the needs of Pam Coughlan – also it effectively renders Registered Nursing Care Contribution & Funded Nursing Care payments cannot be a substitution for NHS Continuing Healthcare (CHC) – It’s the Law, ignorance is no defence – every chance that the CHC team at the CCG are oblivious – write to the Chief Officer at the CCG and the Lay Governor at the same time and ask them specifically to confirm to you in writing that their corporate governance proceedures ensure that their CHC policies meet this directive and send them a copy – the response will be interesting……….

          • Glynis Evans 8 months ago

            This is what they have said when I challenged them about local criteria & I don’t know how to respond – I have to do it in a few parts due word restriction – Part 1
            “… However, I must correct the specific advice you have been given that CCGs are required to develop local criteria for eligibility. This used to be the case some years ago but now the opposite is true.
            When CHC was first introduced in 1996 each Health Authority was required to develop criteria for deciding who was eligible for full funding of care by the NHS in its area and to agree this criteria with their respective local authority. The outcome of this was the development of about 435 different sets of criteria although many health authorities failed to reach agreement with their local authority. Following serious and justified criticism by the media and the NHS Ombudsman the Department of Health attempted to overcome such local variation by requiring Regional Health Authorities (and subsequently Strategic Health Authorities) to draw up regional criteria. This at least meant that there were only 16 sets of differing criteria.”

      • Glynis Evans 8 months ago

        This is what they have said when I challenged them about local criteria & I don’t know how to respond – I have to do it in a few parts due word restriction – Part 3:
        “All of our assessors are trained on the national criteria and this includes an understanding of Coughlan and other cases. We do not attempt to apply any added local variation. The primary health needs test which emerged from the Coughlan judgment is applied as set out in the framework as are the principles of Grogan relating to the limits of the responsibilities of local authorities in the provision of nursing care.”

        • Paul 8 months ago

          Glynis this is rubbish the law has never changed – this is what they want you to think – Their Guidelines Per S107 Grogan are quite clear – They must have guidelines in place at the CCG upon which they can make an objective decision of the patient’s nursing needs versus Coughlan as to exceed that level would be unlawful. – The National Framework is a guidance document only – Coughlan & Grogan are the stated cases – remember it is 99% likely they will never had this put to them & they won’t ‘understand’ as it is contra to the culture & misguided principles in which they work

          • Chris-G 8 months ago

            Glynnis, The standing Rules Regulations (LAW) state this at part 6. https://www.nhs.uk/choiceintheNHS/Rightsandpledges/Waitingtimes/Documents/nhs-england-and-ccg-regulations.pdf
            ‘(7) In deciding whether a person has a primary health need in accordance with paragraph (5)(b), a relevant body must consider whether the nursing or other health services required by that person are—
            (a) where that person is, or is to be, accommodated in relevant premises, more than incidental or ancillary to the provision of accommodation which a social services authority is, or would be but for a person’s means, under a duty to provide; or
            (b) of a nature beyond which a social services authority whose primary responsibility is to provide social services could be expected to provide, and, if it decides that the nursing or other health services required do, when considered in their totality, fall within sub-paragraph (a) or (b), it must decide that that person has a primary health need.’
            This is the Coughlan case enshrined in Law, other than the original case law.
            Now: how does a CCG ensure that this law is complied with if they do not make a direct comparison of Coughlan’s and subsequent patient’s needs? In truth, they don’t do anything of the sort…. Instead they use so called ‘Professional Judgement’ to comply with the wishes of their budget controlling masters whilst claiming to follow the National Framework, which for the most part is not law. The framework even admits at several point that there are no legal definitions of Primary Health Need, Social Care, etc. So all that is left in law, is the Coughlan and other cases and this part of the Standing Rules Regulations that are so obviously ignored…..

          • Jenine 8 months ago

            In the normal course of Courts you would have a comparison with a previous case, known as case law so there are not multiple litigation on the same issue. As I have said previously what is the point of the appeals procedure if it is not lawful.It’s about time there were multiple cases in Court to prove the issue. For instance if you had no social activity to provide for then it is pretty much obvious your primary need is for health.The professional judgment seems to have evolved into a requirement to be on a Fast Track to deaths door and those health needs need to be complex, intense, unpredictable and probably constant 24 hours meaning you are probably in a hospital environment anyway.As soon as you leave that hospital then your needs are considered social even if they haven’t changed.

          • Glynis Evans 8 months ago

            Thank you Paul – I really don’t know how to reply to them now. They have actually said that “Primary Care Trusts (now CCGs) were advised not to attempt to re-write, revise or re-word the national criteria in order to avoid local interpretation of national policy guidance.” I am so confused by all of this. Are there any links that will uphold my argument? I am so very grateful for all your kind help.

          • Glynis Evans 8 months ago

            This is the CCG’s response & I have no idea at all how to respond – “the Coughlan judgement was one of the catalysts for the establishment of a “primary health needs” test. The requirement for local criteria to be developed by CCGs has long since been superseded by Secretary of State’s decision to develop national criteria and this criteria is enshrined within the National Framework for CHC and the supporting legislation which accompanied it before its introduction in September 2007. Annex G relates to a best practice guide for what to include when drawing up local protocols and operational procedures for delivering the national framework in each area as they may operate differently based on local arrangements. This guidance does not incorporate a requirement for local benchmarking as suggested in your email. This CCG does, of course, have operation guidelines and procedures to implement the national framework and these include…. “

        • Paul 8 months ago

          Essentially they have told you what they do & what they believe BUT you have asked them if they comply with the law which is a totally different matter & S107 Grogan tells them they have to and the Secretary of States directive & the Standing Rules are quite clear.

          • Glynis Evans 8 months ago

            Thank you Paul. Unfortunately if I go back to them & say that it is “hidden” within the National Framework, they will just affirm what they have already said that there is no legal requirement for them to have local policies & procedures in place. I do not think that I have a bona fide argument for this & that unfortunately they have basically won this point.

          • Glynis Evans 8 months ago

            The CCG has gone on to say – “The framework itself is Coughlan compliant and there is not a separate “Coughlan test” against which each case has to be compared because the nature of individual cases means that care needs will be different. For example, it is a matter of public record that Pamela Coughlan has autonomic dysreflexia. This is a potentially life threatening condition for individuals with spinal cord injuries above the level of T6. Many clinicians would argue that this condition, in itself, should justify NHS Continuing Healthcare eligibility because of the immediate support required to administer the appropriate treatment. However, it does not mean that individuals without this condition are not comparable and therefore do not qualify. The test which must be applied is that set out fully in the National Framework (pages 14 – 17) taking into account the nature, complexity, intensity and unpredictability of each individual’s assessed care needs.” – I have no idea as to how argue the point about Pamela Coughlan & would so welcome any advice that anyone can give.

        • Chris-G 8 months ago

          In addition the Coughlan Annex at the end of the Framework states this:-
          ‘The duty of clinical commissioning groups under section 3 of the National Health Service Act 2006 (as amended by the Health and Social Care Act 2012), is limited to providing the services identified, to the extent that they consider necessary to meet all reasonable requirements.

          In respect of Ms Coughlan, her needs were clearly of a scale beyond the scope of LA services.’

          As such any legal decision in this regard can only be made by comparing your loved one’s needs with Coughlan’s or a CCG cannot truthfully meet it’s legal duty (mentioned above), in identifying care needs that are within their duty to provide for.

          However, arguing with them at the coalface is a waste of time….. They have no authority to act. They likely do not know the law…… and have not been made aware of their risk of illegal action…..

          • Paul 8 months ago

            Glynis – in simple terms the information IS actually hidden within the National framework but the dots are not joined up for you & the legal duty of the CCGs is deliberately implied rather than specified. In this way CCGs project the conclusion they want to see on to the vagueness of the wording rather than follow their legal duty to pay and write nonesense like you have received. The quickest answer lies with the Ombudsman as it is the process that is flouted & the PHSO simply has to confirm what myself and Chris have outlined to you if asked this very question.

          • Glynis Evans 8 months ago

            Thank you Chris. Unfortunately I have as yet, not been able to find anywhere where it states that there is a legal requirement for them to have their own policies & guidelines with regards to the NHS Continuing Healthcare process & in particular the Coughlan case. Without this I am unable to counteract their points & arguments.

        • Paul 8 months ago

          Glynis – the answer to that letter is that it is nonsense – We are talking abut the law here not their interpretation of what is a guidance document. This is not about local rules being drawn up (which they are free to do) as long as they include criteria against which an objective assessment can be made against the needs of Pam COUGHLAN – Grogan cements it further into LAW – don’t let them confuse you.

        • Paul 8 months ago

          Maureen Grogan had needs that are indistinguishable from those of your loved one – the Grogan ruling was that the Primary Care Trust (now CCG) had set a higher bar than any objective assessment v needs of Coughlan – They are doing the same to you here – It’s a breach of Art 6 of HRA – also this is a financial decision – they are therefore committing a criminal act in denying NHS Continuing Healthcare.

  9. Jenine 8 months ago

    Jeff, you may find it will take about 18 months from time of request of retrospective review .We are waiting for an Independent Review Panel (IRP) date, now approaching 5 years since relative died. yes that long. As Paul says so easy to think all too much and give in. Well after recovering from surgery recently , with all that I have learned over the years about primary health, I noted all my healthcare needs during my overnight stay and I have to say my relatives needs involved more healthcare during that same 24 hour period.For a start I didn’t need turning every hour or more frequently if in pain . I wasn’t checked every hour overnignt.Why then was my care free?? if anyone has any recent advice about an IRP it will be greatly appreciated.

    • Shirley L 8 months ago

      Hi Jenine

      One bit of advice for Independent Review Panel, take someone with you specifically to take notes. Note everything said if possible. In my experience quite a lot of what was discussed , especially that which was favourable to my mother’s case , did not make it into their report. I wrote to them immediately and pointed this out , however had nothing back from NHS England other than they would pass my comments to the chair!!! Our case is now still with the Ombudsman.

      • Paul 8 months ago

        RECORD IT

    • Paul 8 months ago

      The NHS has always in general terms been responsible for
      1) Chronic Bedfast
      2) Convalescent Care (you) ie cannot be discharged
      3) People who owing to their mental condition cannot be social / LA care

      Essentially that has never changed – Government has tried to make it seem like it has but Coughlan & Grogan confirm it hasn’t – There has been no primary legislation which is what would be required and that would change the NHS from being free at the point of Delivery

      • Glynis Evans 8 months ago

        How would you define “Chronic Bedfast” Paul?

        • Paul 8 months ago

          Unable to mobilise from a bed – having to be lifted / hoisted into a chair or wheelchair – unable to assist with any transfers would be my definition

          • Glynis Evans 8 months ago

            Thank you so much Paul. Our relative is totally bedbound & they are unable even to weigh her because of risk of injury. She is on permanent oxygen, Renal & advanced heart failure. Severe cognition. Dementia with occasional behavioural problems. Has to be fed, has dysphagia. Has controlled drugs due to epilepsy plus lots of other other medication (even palliative care medicine from her last visit to A&E). Has severe contractures, doubly incontinent, diagnosed as at risk of malnutrition & has forticreme prescribed, has to be turned every few hours, has pressure ulcers & NHS Continuing Healthcare team say she does not have a primary health need. We are of course appealing decision.

          • Chris-G 8 months ago

            You are supposed to receive all documents that an IRP chair will use in the review……..

          • Chris-G 8 months ago

            Crazy when assisting with transfers from bed to chair / wheelchair used to mean being able to use a banana slide under supervision. Now it seems that if you can move your arms a bit then you are only assisted when two staff and a massive machine are required to hoist you…..

        • Paul 8 months ago

          Note – Pam Coughlan can not get out of Bed without assistance as she is tetraplegic – her nursing needs are not complex or unpredictable or intense ( all terms specifically ruled as illegal and not to be used in ‘Grogan’)

        • Paul 8 months ago

          From that description she simply has to ‘qualify’ for NHS Continuing Healthcare – I put in inverted commas for the reason that the NHS use the National Framework to do as they please on the basis that the law isn’t properly described within it nor the proper process required because of it – they will tell you that the nursing care has to be that given by a registered nurse, has to be ‘complex and intense & unpredictable’ all of which has been specifically discounted in the highest court in this country. See Leeds Ombudsman Case 1994 Coughlan herself and Grogan. The CCG has to know the law and ignorance is no defence.

          • Glynis Evans 8 months ago

            Thank you Paul. We have demonstrated the nature, complexity & intensity in a 35 page appeal document. The fact that they had to come out 4 times in the space of 4 weeks to re-visit the Decision Support Tool (DST) because of her deterioration & had to upgrade some of the domains, we believe shows the complexity of her illness. The medication domain they downgraded from High to Moderate when it went to panel. We complained vehemently as in the previous DST the same panel had agreed it should be High. They changed it back to High. The nutrition domain the graded as both Low & High because she went from being fed on the 1st visit to at great risk of malnutrition on the final visit (she has lost a lot of weigh over the last few months & we insisted a dietitian was brought in) & being prescribed Forticreme. We have complained & said that they cannot have 2 grades & should choose the higher one. She is not going to get better. They are now just managing the need with pureed food & high protein & vitamin supplements. It is disgraceful what they get away with

        • Paul 8 months ago

          Glynis – indeed everyone read this – what Ian did here [2006 article] is as clear and relevant now as it was then – http://news.bbc.co.uk/1/hi/programmes/panorama/5196242.stm

          • Glynis Evans 8 months ago

            Thank you Paul

          • Paul 8 months ago

            Trust me – don’t try to ‘prove eligibility’ challenge them on process first – Nursing Care is a right in this country and it’s up to them to prove she doesn’t qualify – If they haven’t got a process that is specifically directed by the Secretary of State in place then they better had before the review or it should not take place.

        • Paul 8 months ago

          If you are going to Independent Review Panel then you before you go must have a copy of the CCG’s Policies and guidelines which MUST comply with S107 Grogan – if they don’t then against what are they making an objective assessment? – Likewise with any previous assessments include Decision Support Tools Local appeals etc ? All procedure is flawed without that – Also I would get a Subject Access Request made to see everything they have done with your relative – all meetings letter emails etc

          • Glynis Evans 8 months ago

            Hi Paul – I have just put that to my local CCG as we are at Independent Review Panel stage & this is what they have come back with “The National Framework does not require local authorities or NHS bodies to compare each case it considers with Pamela Coughlan’s specific needs. This would not be possible because we have to consider a wide range of care groups including people with dementia, mental illness, learning disabilities etc. Indeed, Pamela Coughlan had specific needs which would not apply in many other cases. This would not necessarily make them ineligible.”
            I don’t really know how to respond to that…..

            “All of our assessors are trained in the understanding of the principles of the national framework and how the criteria set out in the national framework should be applied.”

        • Paul 8 months ago

          They won’t even realise what you are asking here – The National Framework is a carefully crafted piece of obfuscation – it contains broad information but we are talking about the law here as laid down by the stated cases – S107 Grogan absolutely requires them to have criteria in place against which they can compare your mother’s nursing needs against those of Pam Coughlan – they simply do not understand what Coughlan Compliant means – See the directive from the Secretary of State I posted on here a few days ago – their ignorance is no defence – for them not to have this in place
          Involved contravention of Article 6 of the Human Rights Act and criminal offences – they cannot set their own criteria – tell them to go read it – To contravene this means they would be committing serious criminal offences

          • Glynis Evans 8 months ago

            Thank you Paul. I have searched the internet to find details on Maureen Grogan’s case & where it mentions about the CCG having to have criteria in place to compare against Pamela Coughlan. All I can find is a link to a Panorama report, which does not mention this & some mentions on this website about the case, but nothing about them having to have criteria in place. Thank you for all your help & kindness

        • Paul 8 months ago

          Remember the diagnosis isn’t the determining factor anyway – you don’t get it because you have Dementia Parkinsons etc Per se it’s the nursing needs – very likely you will be the first person that has put this to the CCG – Most people will not have figured out what I have told you – DO NOT be put off

          • Chris-G 8 months ago

            This would not be possible because we have to consider a wide range of care groups including people with dementia, mental illness, learning disabilities etc. In regard to the comment above and yours, Paul, This is being used as a defence against comparing Coughlan and the current case, yet is in fact groups of patients sharing the same diagnoses…….. Of course diagnosis is irrelevant and as such, so is having patient groupings according to diagnosis. What the CCG has to show is how they complied with standing rules regulations that relate to Coughlan and others in that case. The rest of the Framework and the criteria are as Paul writes, an obfuscation. Even the term Primary Healthcare Need is bunk…… Primary and the word used by the Coughlan Judge, Primarily, are very different words…. She did not have a Primary Healthcare Need….. Her needs were primarily for healthcare…… Very different.

    • Glynis Evans 8 months ago

      Hi Jenine – My best advice would be to become a member of the Care to be Different Facebook page & then post a comment on there. We have received so much help on there from people who are going through similar. Good luck x

      • Paul 8 months ago

        Jenine – the Law is on your side – the process has to be Coughlan Compliant (see S107 Grogan) is on your side – the problem is that the CCGs do not have procedures and guidelines that are compliant with the Law. This has to be the starting point of the process not later in as a resolution. It’s violates your Article 6 Human Rights If it is not in place.

        • Glynis Evans 8 months ago

          That is really interesting Paul. can you clarify please how it violates ones human rights & how it could be used in an appeal etc. Thank you

          • Paul 8 months ago

            Simply they cannot fail to employ procedures that have been laid down in Law to obfuscate delay mislead you – Article 6 – however that is exactly what happens all the time – The Secretary of State gave a directive to follow S107 Grogan and set an objective standard at each Primary Care Trust (now CCG) so that Coughlan cannot be exceeded – None of them do therefore they break this – indeed all the Ombudsman cases are on line to provide guidance so these should not be exceeded either – they are committing criminal acts as a result – these are financial decisions

          • Paul 8 months ago

            Essentially if the CCG you are dealing with has not got stated Guidelines against which you can assess the individual concerned with the needs of Pam Coughlan to ensure they aren’t exceeded then ANY assessment Decision Support Tool, Independent Review Panel whatever cannot proceed and it will be a contravention of your Human Rights to do so.

            This IS the scam – the NHS / CCGs deliberately do not have these in place – It’s a starting point not for dispute resolution

    • Paul 8 months ago

      Jenine (replying to previous post as that is what it will allow me) Don’t need multiple cases in court – what is needed is for the LAW that has been tested twice at the highest level in Themis country to be properly implemented. ( Coughlan / Grogan) the Parliamentary & Health Service Ombudsman cases also need to be ‘assessed’ in practical terms to provide a national guideline and the process to be properly outlined in the National Framework – remember Complexity Intensity Unpredictability are terms rules inadmissible under Grogan……

  10. Katrina 8 months ago

    I have been told by NHS England after requesting an Independent Review Panel that all the “evidence” contained in 2 large boxes has been sent from the Commissioning Support Unit (CSU) direct to them. Can I insist that all the evidence be put in the chair’s file and then sent to me. I get the impression that the CSU did not copy the evidence but just sent the 2 boxes so that NHS England have the originals. I am not getting any advice from NHS England of the exact procedure as to how I can view all the evidence myself before it is sent to the chair.

    • Jeff 8 months ago

      I am not sure if anyone knows what the correct procedure is – I made a request for NHS Continuing Healthcare (CHC) for my Mother in Law, I started this process in Jan 2016 and she passed away in November 2016, and at that point we still had not received any progress on the application, apart from a checklist being completed. (August 2016). Since her passing I have tried to pursue the claim, and will not give up! – via the Local Hospital NHS Trust, CCG, Local Authority, Commissioning Support Unit, NHS England and the Ombudsman, and all seem to be ‘passing the buck’ the CCG have agreed to do a ‘retrospective review’ of the case this was agreed in November 2017, but since then – nothing. I have written twice to the CEO of the local CCG, and those letters have not even been acknowledged.
      The system is a complete disgrace, and no one seems to be able to move things along. As it has been said before, I think they just want you to get fed up with the process and you give in – I do not intend to do that.

      • Paul 8 months ago

        No DO NOT GIVE UP !!! The system is there to make you do that

      • Glynis Evans 8 months ago

        Hello Jeff – so very sorry to hear of the problems that you have been experiencing & so very sorry to hear of your mother in law’s passing. This is so typical of the people involved in this process. We have experienced virtually the same kind of thing. A number of us have contacted Victoria Macdonald at Channel 4 news & apparently some of what we have contacted her about will be featured on the Channel 4 News programme at 7pm tonight. All of this come on the back of a damming report released about the NHS watchdog & Parliamentary & Health Ombudsman. To be honest they are all as bad as one another. We are hoping that tonight’s piece will help highlight the problems. It may be worth contacting your MP & getting them on your side as well. Good luck

        • Paul 8 months ago

          Thanks for the heads up about C4 – will watch and comment

    • Paul 8 months ago

      You should get a copy of what the CCG have sent to NHS England – you may want to ask for a Subject Access request if you think things may be ‘missing’

    • Paul 8 months ago

      Remember it is the ‘job’ of the NHS to make things as opaque as possible & for you not to know what has to be part of the process – you must read S107 Grogan and they must have guidelines against which to make an objective assessment against the Nursing needs of Pam Coughlan as a result

  11. Jenine 8 months ago

    There does not need to be any physical issues if the behaviour is enough to be challenging that it seriously puts that person or others at serious risk ( assume that being naked in another resident’s room is serious enough !!!) – then this domain of the Decision Support Tool (DST) has a Priority rating enough presumably to give eligibility on its own. What you don’t want to see is those needs being downgraded because the need is being managed with 1-1 and sedatives. Might be better rewriting your comment on another thread dealing with the process from the beginning rather than this thread about the appeals procedure.

  12. mike 8 months ago

    Hi – I’m not sure if this is the right place to ask a question but if someone could point me in right direction please. My father has been in a care home for over a year self funding. He has Parkinson’s and behaviour issues mainly relating to dementia. Still being properly diagnosed and he’s having a mental assessment. The care home has served him with notice as he was found late at night naked in another residents room. Lots of confusion ensued and the police were called. They said its common and nothing further would happen, however the home have said he now needs one to one care 24 hours which is going to cost a whopping £3360 a week and we must move him. They supposedly now can’t cope with his behaviour. The home have applied for an NHS Continuing Healthcare (CHC) assesment which we are awaiting and they think he needs a scan. His front loba area is deteriorating. However if we move him will to obvoiusly more affordable and suitable home will this immpede the CHC process and how can the home justify such a large amount of money? It will just mean the pots empty very rapid and then council will have to pick up tab. He has a DoLS and it seems they have a nurse outside his room but there’s a pressure pad to alert them also. Any info would be appreciated as i’m not sure where to turn.

    • Glynis Evans 8 months ago

      Hi Mike – So sorry to hear about your father. We had a similar experience with my father, except he got up in the night & went walkabout. He saw his reflection in a mirror, then fell downstairs breaking his hip in the process. The care home said they could no longer cope with him. You need a nursing home that specialises in advanced dementia – you local authority should help advise on this. My father had to be sedated at bedtime & this may have to be the case with your father. £3360 per week seems absolutely extortionate & I would research other suitable establishments for him. Just as an additional note, my father did not get any funding of any kind – in fact we were never even told of any assessment when he left hospital. Although I doubt if he would have been entitled as physically he was not too bad. It was 8 years ago but we were only paying around £500 per week. Although the home he went into in the end, did not look after him properly & he ended up with pneumonia & sadly passed away in 2009. Good luck & don’t let them take advantage of you.

      • mike 8 months ago

        Thanks for the reply. We are looking around for another place. The present one is really greedy for money. The staff/carers are great but the management are like a sales team. Scandalous charges – the goverment should pass laws on this overcharging greed.

    • Christine 8 months ago

      Hello
      Your father though self-funding is entitled to support from social services in finding a suitable placement that can meet his needs. This is in accordance with the Care Act 2014. Social Services may charge.
      Under CQC Guidance the care home must clearly identify any charges made, for the increase they are demanding. The CQC website will detail other homes, be honest with the homes about your fathers needs. Sometimes social workers and care homes are not which is unfair on both parties.
      A positive is that at least the care home have requested an assessment for NHS Continuing Healthcare. You could check with your CCG that this is being actioned and get some names, emails and contact details so you can chase this up. Involve the GP, emphasise the urgency.
      Might sound silly but whilst you gather Information and gain knowledge of the process act a bit daft and say you simply do not know how to find a suitable placement as you wish to avoid other homes simply saying they cannot cope and have to move again. Though I can understand the urgency to find the most cost effective solution.
      Make sure the home is recording any behaviour that may challenge in detail as this is useful evidence for the future. Every single occasion, it’s duration, how it affects others, any triggers, what helps. If you are paying for 1:1 care make sure your father is getting it. They have no excuse for not having accurate records.
      As Deprivation of Living Standard (DOLs) is in place your father is entitled to an advocate (IMCA) as it is being requested that he move which is a big decision. If you or another family member is the relevant person’s representative under DOLs you are still entitled to advocacy to support you in the decision making process. The care home should know this but some don’t.

      Good luck, it’s a battle but one worth fighting.

      • Paul 8 months ago

        He is very likely NHS Continuing Healthcare (CHC) ‘qualified’ – the LA must be involved in the CHC process.

        • mike 8 months ago

          Hi Paul – what is the LA? I’m not famialiar with these abbreviations. I’m trying to catch up fast.

          • Angela Sherman 8 months ago

            Mike – ‘LA’ is local authority.

      • mike 8 months ago

        hi thanks for the reply christine. I have found another home which seems good and told the lady about his behaviour it is also going to be self-funding at first as there will be no decision or assesment done yet. Is it ok to move him or will this frustrate the process we really need to get him away from these extortionate costs that will start on feb 12th according to the letter of termination she is happy to go and assess him

      • mike 8 months ago

        Hi – ive just found out a bit more about the situation. It turns out my father molested the woman in the room the mental team said it was due to the dementia so they wont section him. I was hoping for this because then he can be properly assesed for his needs and type of home. Apparently they are doing an NHS Continuing Healthcare (CHC) assessment next week. The social workers are not to helpful but we have got some care homes to view who can cope with this situation and are secure. We have a care home that specializes in dementia assesing him thursday but i think they will turn him down now I know more of circumstances. Its totally out of his character but apparently the Parkinsons attacks the brain. Also and there is definite change in the last 6 months.

  13. Jenine 9 months ago

    Question. can you make a Subject Access Request if the person it is about is now deceased and it is a retrospective review.

  14. Katrina 9 months ago

    Deceit and dishonesty is the name of the game. I have just received a copy of the Chair’s file following a request for an Independent Review Panel to find that there is no evidence of care needs contained within it, just a very small selection of GP records/hospital records supplied by the nursing home. The Commissioning Support Unit did not even request hospital or GP records and instead told me they were “extremely” difficult to obtain.

    • Paul 9 months ago

      Submit a Subject Access Request to the CCG and ask for everything including all internal letters, memorandums details of meetings and attendees phone records etc

  15. Jennie 9 months ago

    Paul. There are a lot of criminal offences out there but who is prosecuting??

    • Paul 9 months ago

      The whole system is set up in such a way as to misinform mislead and delay in the hope that the vast majority of people give up and go away – Some ‘scalps’ are needed

      • Shirley L 9 months ago

        Paul

        I agree with you wholeheartedly. Surely these people cannot get away with so much deceit for much longer. I recently served Subject Access Requests on both the CCG and LA and is it apparent that I have been given so much misinformation throughout this process . It is truly unbelievable that they would stoop so low. I am attempting to pursue the issue . I have requested a meeting with the CCG operational manager to discuss this but she has not replied to my email !!

        • Paul 9 months ago

          They will almost certainly try to avoid the meeting. Obfuscation is the name of the game. Challenge the PROCESS rather than your claim as the answer lies there – see what I have written on here and repeat it to them

        • Glynis Evans 9 months ago

          I agree Shirley. they are totally corrupt & deceitful. The local hospital happen to have conveniently lost our relatives important case notes when she was last admitted to A&E & was prescribed palliative care medication – there is apparently an internal enquiry currently taking place. We requested a copy of the social workers notes that she used for the Decision Support Tool. They said they would need to remove 3rd party information first – that was 40 working days ago & today I am reporting them to the Information Commissioner’s Office.

  16. Jennie 9 months ago

    Very interesting comments Mr C G. Did not know the low level of medication Coughlan was on compared to our relative’s dozen or so drugs administered at least 4 different times of the day, and required 2 reg nurses for the pain patch, as 30 times more potent than morphine which also was not always effective as required additional pain relief. Massage increasingly during the claimed period which the nurse assessor downgraded and described as discomfort, yes really, why would you be on such a potent pain patch with just discomfort???. Also bedbound (mobility), and what that brings with it, the intensive turning schedule including during the night and inability to be weighed ( nutrition ) psychological as unable to move, bedbaths, hardly satisfactory (continence, hygiene issues with risks of infections) had 11 during the course of 1 year.,etc, etc.
    As far as I understand it social needs are the ability to be part of normal life, bathing, going to the toilet, being mobile to go out or move about etc. Surely bedbound with TV, books and visitors is no measure of any real social activity or any quality of life for that matter. Would you tell a relative they have to pay to watch their own T.V, read their own books and see their own visitors whilst the other care they received and paid for is health care when the vast majority of the public when in hospital receive it free? Once you leave hospital although the care you need is the same i.e you are not going to recover further, because it is being provided by a home not in a hospital, you have to pay .

    • Paul 9 months ago

      The whole point is that Pam Coughlans needs are Nursing needs but low level – She remains THE STATED CASE

      • Chris-G 9 months ago

        Of course it is Paul…… But it being the case, still requires one to go through all of the hoops before a Judge will hear matters. Given that, it is perhaps best to construct a type of legal skeleton argument that includes all of the breaches of the rules and law and then reference them, using some portions as emphasis. The matter of the needs and their general downgrading; that is where using ADASS’ Commentary as a reference and a comparator, comes in handy. The Independent Review always runs two separate parts. One is the procedural failure observations and the other is the needs….. Given that it is entirely correct to challenge both in minute detail (80+ pages (without reference material), once for us)….. so that the work (apart from revisions and additions), does not need repetition at each stage.

        • Paul 9 months ago

          Ah this is where I think the Ombudsman can short circuit – If the CCG is requested to confirm in writing (certify) they have made their assessment against the explicit instruction in S107 Grogan and fail to do so the Ombudsman HAS to rule the local procedure incomplete and throw it back to the CCG and tell them to look at it again

        • Paul 9 months ago

          It is a clear breach of the HRA for the CCG to deliberately obfuscate If a clear comparison to Coughlan or indeed any of the PHSO cases means eligible – These are financial decisions as well remember so they will be committing criminal offences if they deliberately withhold funding

    • Chris-G 9 months ago

      Jennie, Read the words within the boxes of the drugs domain. Any drug that is required to be administered to prevent relapse, stands alone within the domain as ‘SEVERE’ ….. I doubt that ‘as required’ pain killers counts but most other meds do.
      The rest of the domain wording does not mean a damn and should not need to be considered.
      Also there is the matter of ‘CONCORDANCE’…….. One cannot give the concordance, as is actually described and defined within the last pages of the Decision Support Tool, unless one has cognition….. Thereby making much of the rest of the wording in the drugs domain irrelevant if a patient has no cognition or is incapable of making decisions…..

  17. Andrew 9 months ago

    Happy New Year! In our case I have just discovered that there is a care home file which we have never seen or had access to in which the care home has written details of incidents concerning our Loved One’s need, which have not been detailed deliberately in our Loved One’s daily care notes (we have had assessments in the past where previous assessors have described the home’s notes as lacking detail or inaccurate). We had already sent subject access requests to the care home for the time periods in question and so the data in this file should have been disclosed.

    The Care Plans for our Loved One which we have seen deal with a specific snapshot in time. My experience is that care plans often miss needs; needs which add to the nature, intensity, complexity and/or complexity of a candidate for NHS Continuing Healthcare’s eligibility.

    Yes the Coughlan bar is low, but many clinical commissioning groups don’t care what the Coughlan judgement says. They mark their own homework after all, and whether we like it or not, the default position for many CCG’s is to deny full NHS Continuing Healthcare.

    Our experience so far is that it is necessary to prepare your case as if it will have to be appealed as far as the courts because the NHS gets to mark its own homework. Hopefully it won’t have to go that far because hopefully either an NHS England independent review or the Ombudsman will bring some much needed impartiality and compliance with the rule of law into the decision making.

    If you believe there is relevant evidence that might assist your loved one’s case, logically it is sensible to get hold of all of that information, regardless of how much of it there may be and regardless that some of it may invariably not assist. If you were instructing lawyers act for your loved one that is what they are obliged to do professionally. Winning or losing a case sometimes turns on a few pieces of key evidence which have been sifted from a haystack of irrelevant material.

    • Paul 9 months ago

      Andrew they can’t set their own criteria – That is what the Grogan case was all about – Challenge them on the process they use which MUST Be ‘Coughlan’ compliant, following the stated case R (Ex parte Coughlan) v North and East Devon Health Authority July 1999 Ask them What objective standard did the assessors use to assess the level of nursing need? In R (Grogan) v Bexley NHS Trust (2006) 9 CCLR 188 Mrs Grogan argued she had wrongly been denied continuing care funding because the eligibility criteria used by Bexley Care Trust were not ‘Coughlan compliant’ and therefore her assessment was unlawful. Instead, they had applied a higher test than that set out by the Court of Appeal in the Coughlan Judgment to assess her eligibility. On what objective basis did they ensure that they have not applied a higher test than that set out by the Court of Appeal? Section 107 of the Grogan judgement requires them to (1) establish the test to be applied, (2) to satisfy themselves that it is lawful under Coughlan and (3) be clear that the establishment of the RNCC scheme in 2001 does not and could not alter the law as established by the Court of Appeal in the Coughlan case. On what objective basis has the CCG assured itself that it is fully compliant with the requirements established by ‘Grogan’? Send them this word for word – if they do not follow this process complain immediately to the Parliamentary & Health Service Ombudsman.

      • Andrew 9 months ago

        Paul

        You are preaching to the choir!

        Unfortunately, what you have said isn’t my experience. Clinical Commissioning Groups ignore the case law. They have been given their guidance issued by the Department of Health and the case law does not matter to them.

    • Paul 9 months ago

      The point is don’t challenge the decision challenge the PROCESS for unless the CCG have that in place they are breaking the law and the HRA – and none of them do….

      • Andrew 9 months ago

        Paul

        With all due respect, in order to obtain NHS Continuing Healthcare for our loved ones it is necessary to prove that they have a “primary health need.” Simply proving that a clinical commissioning group has failed to follow process will usually force a CCG to have to re-examine afresh the assessment.

        The law in Coughlan and the underlying secondary legislation which is based on Coughlan are quite clear. A candidate is only eligible to receive NHS Continuing Healthcare if their needs are primarily health needs.

        • Paul 9 months ago

          Andrew – Coughlan is the law being the stated case – This is cemented by Grogan and the CCG cannot set a higher bar – the issue is the CCGs have to be able to make a value judgment against that case otherwise their PROCESS is flawed – Don’t try to ‘prove’ the person had a Primary Health Need because that’s when the CCG can use the National Framework as a defence where it is for guidance only and just state they don’t believe they qualified. This is all about misdirection / holding you up in the hope you give up and go away.

          • Andrew 9 months ago

            Paul

            Again, with all due respect, if a candidate for NHS Continuing Healthcare cannot demonstrate that their needs are primarily health related as opposed to social care needs, the legislation and case law is crystal clear. They are not eligible.

            My experience is that at clinical commissioning group level the CCGs are not interested in the law. They follow their guidance doggedly. But even if a case were to get to court, the law still requires a candidate to prove that the majority of their needs are health related such that they have a “primary health need.”

            As drafted the current National Framework is quite a well drafted document (assuming it is followed). Unfortunately, the real problem lies with the Decision Support Tool (DST) which Clinical Commissioning Groups are supposed to use as information gathering documents to assist professional judgement in deciding NHS Continuing Healthcare eligibility is flawed and allows far too high a degree of subjectivity in the decision making process in terms of how complex, intense and unpredictable a health need is. It doesn’t help that the DST is one of the most badly written (deliberately so) documents I have ever had the misfortune to come across.

            Having seen the “system” that is in place for a while now, if I could be granted one wish, it would be that the decisions taken in the first instance are taken out of the hands of Clinical Commissioning Groups, many of whom as I have said have adopted the default position that candidates are ineligible.

        • Paul 9 months ago

          Andrew I should also point out there is NO secondary legislation – Coughlan is the stated case nothing has changed apart from the National Framework (NF) muddying the water – The key line from the NF is the last line in Appendix B –

        • Paul 9 months ago

          Andrew no you are wrong – Yes correct about Primary Health Need (PHN) but the LAW the ONLY Law is Coughlan – The scam is the CCGs are allowed to use the National Framework which is well written to put you off the scent but Coughlan and Grogan remain in there for very good reason – Read Grogan S107 in full – Trust me the CCGs are allowed to operate outside what has been laid down in the Court of Appeal as they STILL don’t have the right processes in place 18 years after the Judgemnt and 11 years after Grogan There are many Ombudsman cases as well covering most peoples conditions. This is about flouting the Law to protect budgets and the culture goes from the Department of Health down through the system.

        • Paul 9 months ago

          It may be better to take our discussion off line as this is not an easy thing to grasp for the reasons I have intimated –
          you have a twitter account ?

          • Andrew 9 months ago

            Paul
            Thank you for your comments. The entire current NHS continuing healthcare system is now based on primary and secondary legislation.

            Section 22 of the Care Act 2014 (primary legislation) sets out the level of support local authorities can provide at law. It forbids local authorities providing health services unless “doing so would be merely incidental or ancillary” to providing the usual social services a local authority is supposed to provide. In addition, the health services provided must be “of a nature that the local authority could be expected to provide.”

            The National Framework, Checklist and Decision Support Tool were created following the passing of secondary legislation through the Department of Health. The current relevant secondary legislation is The National Health Service Commissioning Board and Clinical Commissioning Groups (Responsibilities and Standing Rules) Regulations 2012 (regulations 20 to 32)

            Alas no I am not on Twitter, nor Facebook. I don’t do social media.

            This isn’t my area of expertise. But I think I understand the law and procedure fairly well now. If I don’t then all that time and money Mum and Dad spent sending me to law school was wasted.

            Paul in fact you and I actually agree. All I am saying is that my experience so far is clinical commissioning groups are prone to say “The Department of Health has mandated that we follow the National Framework. We don’t care what the cases say, they are old cases and don’t apply!” That, of course, is wrong.

            To use your example, yes if you can prove that a CCG has made a decision based on protecting its budget rather than based on health needs of course that gives you grounds to appeal (successfully one hopes) and hopefully a fresh hearing of the evidence. But legally one is still required to demonstrate from the evidence that our loved one’s primary need is a health need (even though the legal threshold for doing so is relatively low based on the case law).

        • Paul 9 months ago

          Andrew yes we agree completely about the Law – However I what I am talking about is how to navigate the system – Whilst one allows the CCG to follow the procedure in the National Framework (NF) rather than what is laid down in case Law (Coughlan & Grogan) then they can obfuscate (in contravention of the human rights act) – If you complain to the Parliamentary & Health Service Ombudsman (PHSO) that the CCG is ignoring the LAW in its assessment process (per S107 Grogan) then they must throw it back to them. Because of the cost implications this is a political game where the LAW is avoided by the NHS in fear of setting a stated precedent. Hence Coughlans condition is not specified in the NF But described as ‘clearly of a scale beyond the scope of LA services’ The Ombudsman’s ‘stated cases’ all involve asking the CCG ‘to look at it again’ rather than specifically ruling for that same reason.

          • Chris-G 9 months ago

            What does clearly show the Coughlan case is this 2007 document that is still valid advice (as far as an ADASS manager was concerned). See:-
            https://www.adass.org.uk/adassmedia/stories/Publications/Guidance/commentary_oct07.pdf
            The later parts show Coughlan’s needs and if you type them into a word processor and then use your own care notes to compare, in a different script or italics you can provide anyone who needs to review matters, with evidence that your loved ones needs exceed the legal remit of a council to provide……… Especially if you read the whole document……… You will see that this is advice to adult social service managers and it was based upon analysis of many patient’s assessment’s of levels of need that had already allowed Continuing Healthcare funding. What many do not realise is the number of patients that also benefitted from joint complainants in the case….. One (unlike Ms Coughlan), was bedbound for example….. So being bedbound should not be an indication of less needs as is often tried on by assessors…….

          • Chris-G 9 months ago

            I should have written to make a copy of the ADASS document https://www.adass.org.uk/adassmedia/stories/Publications/Guidance/commentary_oct07.pdf because these things get taken down or hidden….. (as this was hidden within a long list of random looking documents, a while ago)…….

          • Chris-G 9 months ago

            So in short, attack the procedural failings and law breaches. Decisions cannot stand if they are made illegally.
            Then also make a comparison of Coughlan’s needs with yours. Make observations of Decision Support Tool information that is incorrect or in conflict with the wording of the score given.
            Don’t forget to make your version of the comparison in nit picking detail e.g. ‘needs assistance to transfer’….. Requires greater explanation. Most assistance is in fact the doing of the entire task for the person….. ‘Assistance’ is misleading. Then remember….. ADASS wrote this:-

            ‘The court found that Pamela Coughlan’s needs “were primarily health needs for which the Health Authority is, as a matter of law, responsible”.

            F1.9 Pamela Coughlan’s healthcare needs and her need for registered nurse care were neither complex nor unpredictable. However the court took the view that a) the quality and quantity (nature and intensity) of her health needs and interventions were such that she had predominantly healthcare needs and b) her need for registered or unregistered nurse care was more than incidental or ancillary to her accommodation needs and was not of a nature that a Local Authority could reasonably provide (i.e. they were not social care needs). ‘

          • Chris-G 9 months ago

            Even the medication that Coughlan is described as receiving is beyond a social services team to administer and is in fact only various laxatives and she could state the efficacy of them or otherwise to her nursing staff. She could ask for more or less…… She could delay……
            That is not the case for anyone without cognition that would relapse if much more complex meds were ineffective or did not have a registered nurse to monitor the efficacy and to administer them. That is why the medication part of the Decision Support Tool has a stand alone clause stating the need for meds that would cause relapse if they were administered incorrectly……..

          • Chris-G 9 months ago

            And I agree with Paul, that the CCG/Commissioning Support Unit (CSU) will only follow the Framework. But law that over rules the Framework actually exists within the standing rules regulations and actually does require them to consider Coughlan’s levels of needs because there is the obligation in the law to apply the social services’ legal remit test:-
            ‘ (7) In deciding whether a person has a primary health need in accordance with paragraph (5)(b), a relevant body must consider whether the nursing or other health services required by that person are—
            (a)
            where that person is, or is to be, accommodated in relevant premises, more than incidental or ancillary to the provision of accommodation which a social services authority is, or would be but for a person’s means, under a duty to provide; or
            (b)
            of a nature beyond which a social services authority whose primary responsibility is to provide social services could be expected to provide,
            and, if it decides that the nursing or other health services required do, when considered in their totality, fall within sub-paragraph (a) or (b), it must decide that that person has a primary health need.’

            That is of course, a need to understand the Coughlan case or assessments cannot be done properly….. Outcomes cannot be legal.
            So any time an assessor denies knowledge of the Coughlan case or dismisses it as old etc. then they display contempt for the law and expose their own failures to properly assess, recommend and then to indicate what the correct decision should be…….
            For panels and then CCG decision makers to fail in this is to have disobeyed the law whilst following the Framework Guidance in it’s place…….

  18. Glynis Evans 9 months ago

    Thank you for your kind responses. As we live 250 miles away it is difficult to choose which notes to request, so have no option but to request them all. We have LPA. We really don’t want to antagonise the Nursing Home owner by reporting them to the Independent Commissioners Office as we are concerned about repercussions to my mother in law. Also the owner is currently on our side & believes that she should be receiving full funding.

    • Paul 9 months ago

      Glynis – remind me what you specifically need this for again – I’ve lost the thread

    • Paul 9 months ago

      Where are you and where is the nursing home ?

      • Glynis Evans 9 months ago

        Was just adding follow up comment to rest of the thread. We are currently in 1st stages of appeal – Local panel, which apparently is going to take up to 3 months for them to collate information & arrange review/meeting.

    • Andrew 9 months ago

      Glynis

      I really feel for you. We are lucky in that we do not live too far away from our loved one’s care home and so we can visit and review the care home documents at our leisure. Indeed, sometimes it is better to do so because sometimes the home may decide not to copy and send you something which might turn out to be relevant.

      Do you have any relatives who live closer to the home who might be able to view what you are after and take copies?

      If the care home owner is on your side I would agree that it is best to try to keep them on your side. We know from bitter experience how easy it is to antagonise care home owners and staff, which invariably leads to them being uncooperative in future and impacts the quality and helpfulness of future care notes they write about a loved one.

      • Glynis Evans 9 months ago

        Thank you for your kind message Andrew. Yes, there is my husband’s sister. Unfortunately she works for the NHS & will not help us in any way.

        • Paul 9 months ago

          That is ridiculous – Why ? Remind her of her duty of Candour……. Anyway this is just obtaining information – this is as if she was was involved in NHS Continuing Healthcare……

          • Glynis Evans 9 months ago

            She has virtually fallen out with us over it, she will not help us. It is as though we are battling both her & the CCG :o(

  19. Glynis Evans 9 months ago

    Hi Andrew – We have recently requested copies of our relatives notes at the Nursing home she is in, mentioning it was part of a subject Access request. After numerous attempts to get hold of the manager there he told us that he did not have the staff to do copies of all her notes, however he told us we were most welcome to come and view the notes anytime. That is unfortunately a little difficult for us as we live 250 miles away. We wondered too how we stand, although we don’t want to report them to ICO for fear of repercussions on our relative and the fact that the Manager is on our side & stated that he believed our relative should be getting full funding. It is a very difficult situation.

    • Phil 9 months ago

      The Data Protection Act is very clear; there is no exclusion for “not having the staff”. Contact the owners of the nursing home and insist that this is done. make it clear that you do not wish to cause trouble, but do need the notes. Do ensure that you have a right to see the notes, only the “subject” has the right to make the request, or someone acting on her behalf with proper authority (at least written authority from the person concerned, ideally a Power of Attorney.

      • Chris-G 9 months ago

        Not strictly true Phil. One can request personal data on behalf of another to be sent to them. But only if you are close to them and that they do not have someone as a formal advocate. So care home notes should be passed to the patient upon your request and at a time that suits you as representative. If they wont do that then complain to the Information Commissioners and pass the letter to the home too.

        • Paul Culliford 9 months ago

          Has to be a reasonable request – they are not denying access – Why do you need all the notes what does the care plan say – remember Coughlan is the bar and it’s a low one – Best way is to ask assessor to verify the assessment is Coughlan compliant – Section 107 of the Grogan judgement requires them to (1) establish the test to be applied, (2) to satisfy themselves that it is lawful under Coughlan – they cannot set a higher bar

        • Paul Culliford 9 months ago

          They won’t have by the way

  20. Andrew 10 months ago

    Does anyone know whether a GP practice in England taking on a new patient, particularly a new patient who is a British citizen that has lived abroad for a few years and has relevant medical records abroad, is obliged either under their professional codes of conduct and / or legally to obtain the new patient’s old medical records from their previous GP practice in the UK and foreign doctor?

    Thank you.

    • Paul 10 months ago

      How long they been out of the country – NHS Legacy will hold their records if before 2013

    • Chris-G 10 months ago

      Andrew,
      I would imagine that (having lived abroad myself), the GP would do what mine did and obtain the records from my last UK GP. We lived in a jurisdiction that made patients responsible for their own records and as such I was able to pass them to the new UK GP to fill in the gap. If not then I imagine that someone if not the person you are helping, knows a little about what health needs were treated abroad if not the entire details. Such info with approx. dates would enable a GP to add them on in some way as reference if not entirely complete records.
      If the foreign GP is known to you then perhaps they have the records, if the system there was not designed for records to be kept by the person you are helping.
      I don’t think the emphasis is on the new GP to do anything except track down records from the last UK GP…. It would appear unfair to expect them to go globe trotting as a last resort.

      • Andrew 10 months ago

        Chris, Paul and Clare

        Thanks for your thoughts on this.

        I suspect the answer to my question is that there is no professional or legal obligation on a GP practice to obtain relevant medical notes from a previous GP practice, nor from a foreign doctor if the new patient lived abroad.

        If I am right that is a glaring omission in ensuring that a GP practice has everything relevant in order to care for that new patient.

        I am well aware that clinicians like to take a “fresh” medical history when they first meet a new patient. I understand the reasons why they do so. But what happens when the GP practice is taking a history from a patient who cannot or will not tell them EVERYTHING they need to know, and whose family and friends are unaware of pertinent medical history, particularly relevant medical history recorded abroad?

        If there isn’t a professional or legal obligation to obtain such records, there ought to be.

        If any of us were fighting a legal action and decided to change law firms part way through the case, wouldn’t we think the new law firm were failing in its professional duty if it failed to obtain all of the information that the previous firm we instructed held on our behalf? Indeed, there would be legal consequences for the new firm if they failed to obtain information from the old firm that was relevant to the case which resulted in the case being lost.

        Why should GPs not be under a similar duty?

        • Chris-G 10 months ago

          Andrew perhaps I confused you. The UK GP should search last know GPs for any records. I obtained all of mine to check if translation of my foreign records had been fitted into them. My records went back almost 45 years.

          • Andrew 10 months ago

            Hi Chris

            No you haven’t confused me at all.

            I cannot say too much at this stage. However, we have good reason to believe that we have a patient who was diagnosed with significant and substantial ongoing medical conditions, and significant needs generated by those medical conditions, which the patient’s GP practice could and should have been aware of if they had been thorough and curious and attempted to obtain the patient’s foreign medical records.

            The patient was diagnosed with these medical conditions whilst living, working or vacationing in English speaking countries. Diagnosed by English speaking foreign doctors who documented in detail what was wrong with the patient. Foreign doctors who prescribed, where possible, medication to alleviate the symptoms of those conditions.

            On their return to the UK the patient did not inform their new GP practice, nor family nor friends about everything that was wrong.

            Years later when the patient was in crisis, there is a record that a family member told the UK clinicians treating the patient what they knew: that the patient said they had been taken seriously ill whilst abroad in country X. There is also a note by one of the UK clinicians stating an attempt would be made to obtain the patient’s foreign medical records.

            We do not know if any attempt was made to obtain the foreign medical records, or whether the records were obtained and not disclosed to the family.

            This matters because we have good reason to believe that the patient may have been given medication to treat subsequent medical conditions some of which may have had the effect of worsening those ongoing medical conditions that were diagnosed whilst the patient was abroad. And that the patient was not being given medication which may have relieved ongoing illnesses that were diagnosed when the patient was abroad.

            We believe that the patient may have suffered unnecessary distress as a result.

            Yes, ultimately it is the fault of the patient for not being honest and open with their GP practice. That said, we have absolutely no idea how substantial the patient’s loss of memory and descent into dementia was at the time they joined their GP practice.

            It would have cost the GP practice the cost of a few foreign telephone calls and perhaps a few foreign postage stamps to two English speaking countries to have obtained the patient’s written previous medical history.

          • Andrew 10 months ago

            I also know from my personal experience that some GP practices do not bother to get hold of our old medical notes.

            When I was 18 I had to have a minor operation. My GP at the time sent me to a really good hospital to have the operation done.

            Before the surgery was done I had a number of blood tests. One of those tests told me that I have a particular gene which can be problematic if I were to have children with someone who has the other gene.

            That information should be a permanent part of my medical records right?

            And our medical records are supposed to follow us around from “cradle to grave” right?

            Why is it then that my current GP was totally unaware that I had this gene until he did of series of blood tests relatively recently?

            Whenever I have joined a GP practice I have always informed them who my previous GP was.

      • Andrew 9 months ago

        I have been going through our Loved One’s daily care home notes. I just discovered the care home keeps a file about our loved one in which they record information which, presumably, they don’t want relatives to see or have ready access to.

        I have never seen this file. The only reason I know about it is that our LO was taken ill while they were participating in some activity, and the daily care notes refer to a record of the incident being written in some file.

        I need to see this file and have copies of relevant information it contains about our LO’s needs.

        I have no doubt that the file probably contains instances when the care home may have made comments about me and other family members when the care home considered that we were “challenging” in order to get the best for our LO. I don’t care about that now. I really do need to see this file, especially if it details needs that have been deliberately omitted from our LO’s daily care home notes.

        If I make a subject access request, is there any justifiable reason that the care home can to refuse to provide me with copies of all relevant information from their secret file?

        I don’t believe there is because any relevant notes in this secret file form part of our LO’s medical records. But I thought I would check.

        Thank you

    • Clare 10 months ago

      Andrew, I can’t say for certain how things are now, but 17 years ago when I returned to the UK after 25 years in Australia. I was not asked for my medical records. Neither was I asked for the extensive medical records of my profoundly disabled daughter. I gave the GP a detailed run-down on all the family’s health history, including medications and she took me entirely at my word. I don’t know if that was just a fluke or common practice. When our things were finally shipped from Australia to UK, I was able to provide some of my daughter’s records that I had kept filed, which the GP accepted willingly but it wasn’t necessary for me to do so as far as she was concerned. I don’t know if this will be at all useful to you but hope that it helps somehow!

  21. Jenine 11 months ago

    Hello Chris G
    Can you explain why the appeals process has to be exhausted before a right to sue Arbitration has to do ” what is says on the tin”? Sounds to me Independent Review Panel is a re-run of the local appeal not independent and the same false rubbish quoted from the Decision Support Tool. Count me out !!! If I sue what will the Courts say? If arbitration isn’t fair or reasonable then surely you cannot be bound by its decision? Also the Courts will be bound by the Coughlan decision not the National Framework. If the Continuing Healthcare is retrospective then it is a monetary claim. I do get the Local Authority (LA) argument and that it should be easier to prove care beyond LA limits but what if the LA don’t sue us? You have an ongoing debt hanging around and also our own care fees which have still not been repaid.

    • Paul 11 months ago

      Because it’s part of the scam – delay & misdirect is the name of the game – Duty of Candour goes out of the window with their integrity

    • Chris-G 11 months ago

      Jenine,
      Much of what I write here is my considered supposition but it is backed by legal experience and good knowledge of the Framework and it’s Laws. There is some logic applied to what I understand of other law too.
      Advice and a Legal Opinion can be sought via a Barrister if you have the skills to instruct them (Demonstrate The Case), yourself…. Otherwise you would need to lay everything out for a Solicitor to look at so that they can instruct the Barrister. Get a legal opinion even if you feel confident to construct the case and to take the matter to court yourself. Remember…. All judges were once Barristers. Their opinion barring an unknown reason for a better case for the defence, will indicate if grounds exist, to act.
      To answer your question…. The appeals process is a formal process and under Administrative Law any decision that has a formal appeals process cannot be challenged in a court…. Until the entire appeals process (Decision through to Ombudsman), has been exhausted. The CHC process is deliberately designed to prevent court action and to generate failure at every turn, because those failures become ammunition against any determined complainant, to a court…. The failures in appeals cloud the issues…
      The Framework divides appeals at IRP level. For example it splits the session into Appealing the Evidence of Needs and then the Procedural Methods used….. so even ‘Procedural Error’ … Law Breaking and ….. Criminality, has to undergo appeal in the same way as a challenge to the evidence of needs. This is regardless of if it appears deliberate as was the case that happened from 2010 until 2017 in my mum’s repeated assessments and appeals.
      Criminal examples can be stressed (and backed by the written Criminal Law too), in appeals but they will only act on them if you make it plain that you do not want a Magistrates Hearing at this time and then clearly link the criminal act to the Framework Breaches. Here is a good link to get you started because simply knowing the words of the Law is not sufficient……. https://www.cps.gov.uk/legal/d_to_g/fraud_act/
      It is also a way of ‘threatening’ the chair and their panel, because to have heard a criminal accusation and then fail to act on the link to the failure in procedures is tantamount to assisting the alleged offender or even to commit the act after the fact. The Chair arguably has a ‘Legal Duty’ to hear your evidence and accusations (even if they cannot act and decide upon them). A IRP Chair would likely be guilty of a criminal offence to refuse to hear accusations of criminality if it is linked to the matter in hand.
      e.g. Extremely perhaps; if you had video footage of a named CHC individual striking your loved one during an assessment…. It would be bloody foolish to ignore the criminality and so also ignore the fault within the assessment process under consideration. So, an altered DST for example, is proof of a criminal act; the item you hold is a forgery if you also hold the substantially different original. To ignore the criminality and then the failure in the process would be to condone the criminal act and that makes the Chair complicit in the criminality, (if you ever got to a Magistrates/Crown Court to prove it).
      e.g. The Framework States:-
      ‘40.2 CCG decision-making processes should not have the function of: […]
      • completing/altering DSTs […]’
      For anyone to alter a medical record is an offence. The DST forms the care plan. it is clearly a medical record. See half way down this determined FOI request with Police: https://www.whatdotheyknow.com/request/police_response_to_falsification
      For anyone to Knowingly and Dishonestly make a false representation is a criminal offence when done in a financial matter. See: http://www.legislation.gov.uk/ukpga/2006/35/contents
      To (substantially) alter a document and hide the original whilst making a replacement is criminal forgery. To do the same to your own or your employer’s financial advantage is again, Fraud and Forgery too. See: http://www.legislation.gov.uk/ukpga/1981/45
      People have tried to get decisions Judicially Reviewed and have had the Judge refuse to do so solely because they consider (with likely no experience of the process) that the appeals process is all encompassing. (The process, the Needs Evidence, The Coughlan Levels for Councils, The criminal Law, etc.)
      We know that an all encompassing process and appeals are not the case when remarks like…. ‘I cannot discuss law’. Or, ‘Criminal matters cannot be addressed here’. Or …… ‘The Coughlan case is very old and has been replaced by the Framework’…. ‘I cannot comment on whether something is criminal’….. ‘I wouldn’t know if a council top up requested of a spouse is illegal’…. And oh so many more….. Even including ‘We will continue the IRP without you if you insist on leaving now’. (Having failed to properly carry out a MDT assessment, the IRP cannot go ahead because the Law requires such; and also a legally made DST to be in existence before an IRP can actually sit legally. What they would be hearing is an illegal process without admitting their part in taking that illegality further).
      So having covered that and not explained so much more….. In my mind many years ago it became apparent that the much less well resourced and less capable council would be a better target for any court action….. Some here have even commented that the money grabbing lawyers for the council do not know the CHC process when they start action. It is also the case that ‘Coughlan’ was a claim against a Council………
      Why attack the council? (Appeal the NHS too of course).
      They do not have any appeals process that you need by law to adhere to, in regard to their acceptance of the NHS’ CHC decision. You are excluded from their decision making process.
      If it can be shown to be a faulty decision then it is a way in…..

      The NHS assessor’s and Council rep’s incorrect procedure during the MDT and subsequent Panel Phase (if any), is the key here….
      If the council accepts an incorrectly made decision then they would struggle to avoid an outcome via the court, in your favour. Judicial Review seldom demands an overturning of the decision but it is usually what happens. Or else a much more serious and expensive court action ensues that is already risky because of the JR findings of error.

      Criminal matters can be brought up by referring to them in that way whilst demonstrating that they are, (regardless of that court’s inability to rule over), actually against the rules. And very seriously so because the procedural errors represent ‘Prima Facie’ evidence of criminal acts.

      Note: Ours Council did not even have a legally and Framework required interagency CHC appeals process to dispute NHS decisions with the NHS from 2007 until 2012 and then again from 1.4.2013 until I caught them again in Early 2014. IRP records show this is true. Letters too.

      Whilst a complaint is required in regard to their wrongly accepting care needs, it is not an appeal. There is nothing requiring you to formally appeal to the council within the CHC process.
      A refusal to act in your case upon complaint allows Judicial Review of THEIR original decision to accept care needs beyond their legal remit and if you want it complicated, their refusal to act as a result of your doubtless complex and detailed complaint that is sown with examples of Civil Law, Criminal Law, Framework Rules and Court Precedents too.
      Also a JR of their exceeding of the Coughlan Limits is reasonable. Regardless of if they fund or you are self funding.
      Also JR regarding the recharging of funding (if they contribute to cost of care needs). Because they are doing that upon faulty decision making having failed to use their own appeals process in support of your loved one.

      The logic is to avoid any mention of the NHS except to state that their, (Perhaps still being appealed by you), decision has been accepted by the Council and it is the council’s decision to accept the care needs is itself faulty……

      In that last regard….. https://www.adass.org.uk/adassmedia/stories/Publications/Guidance/commentary_oct07.pdf is useful because at Page 22 onwards, there is a ‘Pen Portrait’ of Coughlan and her needs. It can be sliced up and your loved one’s care needs inserted to allow a direct comparison of your loved one’s needs.
      Because it is a creation of the Social Services Managing organisation for Adult Care Directors, It cannot really be dismissed as something that an unidentifiable someone once placed on a Blog. In that light….. Make a copy on your computer, just in case it disappears from the internet….. Things do when they become inconvenient…….

      I won’t go too much into the similar methods available to combat a civil claim for the funding to be paid to the council….. Almost everything discussed and more can be written out and sent to the council as a warning that they will be challenged and that the entire case will need to be heard regardless of any appeals processes….. Their claim will also allow you to get the NHS into a court to answer if they behaved lawfully. This si required because if it is judged that they behaved unlawfully, then how could you owe the money being claimed.

      This is also because the organisation claiming the cash, can only do so because they worked with the organisation that has failed to do things properly….. And by attacking your non payment has kicked in the door to the courts before CHC appeals have ended.

      You could argue that they cannot claim the money until the appeals have ended….. I doubt that would work because technically the money is owed and refundable if they are wrong….. However, one arguably commits a criminal offence if attempting to take money that is not one hundred percent owed…..

      You can read the ADASS report (link above) that actually suggests that any money taken under appeal …. is kept in an interest accruing account and not actually used to pay for the care. (Until I presume, such expenditure becomes lawful).
      I very much doubt (having acquired the records), that (even having refused to pay) that such would ever have occurred in my mum’s case. Ergo the money being claimed was seen as 100% theirs when in three IRP cases it was subsequently proven not to be.
      In any financial transaction, it is not for you to prove that your money is yours…. Anyone claiming it must by law be confident that it is in fact theirs to invoice and then take.
      Having a formal refunds policy makes it apparent that there is doubt as to the ownership claims made by the Councils or the refunds policy need not exist.

      Refunds policies are contrary to the criminal law which makes it an offence to retain a false credit. In short…. ; you get a bank statement showing a million extra pounds has been paid in that is not due you…… If you keep it or hide the fact let alone spend it, then you commit a criminal offence. Having a policy does not over ride criminal law….. Ergo, if an outcome involving council staff is appealed with the NHS, then to invoice and take the money would appear to be a matter of poor timing….. Even if there is an entitlement to invoice for it.

  22. Kate T 11 months ago

    I am currently awaiting an Independent Review Panel (IRP) for a retrospective review of Continuing Healthcare (CHC) funding for my late mother. NHS England sent a request to the CSU back in May for all documents to be sent to them. I have repeatedly e-mailed the CSU myself to ask why it still has not been done. The latest “excuse” is that the senior team member works from home! I was promised these documents 2 weeks ago. The IRP cannot be convened without any documents. What can I do?. I am extremely frustrated after 3 years of this tortuous process.

    • Chris-G 11 months ago

      Kate T, It is not at all unusual even in cases with living patients that NHS England send the docs with a couple of weeks to spare….. At that point I usually tell them to cancel the Independent Review Panel (IRP) and rebook it for some time later……. If these people can take so much time and get paid to delay matters as they do then I demand the right to have a similar period in which to amass data (that they haven’t sent), and to write up further representations to the IRP chair.

  23. Jenine 11 months ago

    Paul 3 weeks ago Reply
    The National Framework is bunkum – it’s a tool that looks like it’s the definitive rules but it’s only for the NHS to misdirect delay and confuse people – The law is what applies.

    If the IRP cannot deal with matters of law then what is the point of this arbitration when it cannot address the key case law on the primary health need principle.All we are doing is complaining about the application of the Guidelines only .The definition of arbitrator is of an impartial person being asked to make a decision to resolve a dispute.So what if this person(s )are not independent or agreed by both parties? You have not properly arbitrated? therefore you cannot be bound by it.And the decision is not final anyway as there is an option to appeal to the Ombudsman.My point in all this is, the only solution is Court action as the only impartial view you are ever going to get on this merrygo round.And further to Chris G on paying the LA debt , we were asked to pay the debt upfront ( By LA’s solicitors who incidently despite offering training on the Care Act don’t actually understand its content or having taken on the case have any knowledge of CHC matters and the law , never mind any understanding of the National Framework.)we were then asked to reclaim from the NHS.Would you pay a £10K gas bill you don’t owe and claim it back? I don’t think so….

    • Paul 11 months ago

      Once the IRP is complete take immediate action with a lawyer and you will win – this is instituionalised fraud – top to bottom – Govt through to CCG – I wish I was joking

      • Chris-G 11 months ago

        Also in this instance, if the council is involved…… Their decisions also require scrutiny. Especially if they take on the partial funding of and recharging for the care. To do such a thing when exceeding their clear legal limits is verging on criminal and is provable as civil fraud at the same time as the main action in proving care needs were beyond their legal remit.
        The way in is to challenge them in a court on the very clear grounds that care needs (in most cases) very obviously exceed those of Ms Coughlan and others in her case. (Again! The argument is with the Council not the NHS).
        That being true, they cannot have taken the Coughlan case (and the Framework requirements and the relevant parts of the Standing Rules Regulations in that regard), into account before agreeing to take on the care from the NHS.
        The intricacies and complexity of the DST in regard to needs and the assessment process almost becomes irrelevant, (except to report process failures by the Council and the outcome and to use the Needs described in the DST (and other records), as being above those of Coughlan), once this point is reached.

        • Paul 11 months ago

          Ha – almost all of the time the council don’t get involved after the Local Appeal which actually invalidates anything at that meeting – reason is don’t want LA exposed to patients representatives – The NHS ‘decide’ what is LA limit and are wrong 99% of the time

          • Chris-G 11 months ago

            Paul, Many years ago I began to explore how so many people that want a court action, could do so. The NHS process is hidebound and requires the need to appeal and ombudsman etc. Very time consuming and complex. No court action is possible until all of that is done and if it even looks (after 3+years ) that you would win then they, via the appeals process, let you get funding for another year as if you had cleanly won the appeals.
            However…… It was the social service that had a limit of care placed upon them by their own laws of inception and later the Coughlan and other cases.
            * In that regard… I consider it quicker to first complain to them that they have exceeded the limits of their legal remit. They cannot ignore an official complaint.
            * Do a subject access request of the council and chase them when they ‘forget’ that most council’s also use subcontract accountants and invoicing companies, lawyers too; all of whom are obliged to respond to the council with the data but often don’t.
            * Then complain to their ombudsman too. If it is ignored and the social do not appeal against the NHS’s decision …….
            * Then the courts are open to decide that if by accepting the care needs, (and this also applies for self funders that have been rejected by the process because their needs are not considered to be healthcare needs), that the council has broken the law by agreeing that the needs are within their legal remit to provide for…. self funders are included in this because they except for their wealth would have required a Council’s assistance and still at some point (Reduced to £23,000 assets or less), could call on them.
            * The court would hear a comparison with others such as Coughlan, or indeed your own previous funding scenario (if funding is removed)…. Because that usually shows little if any change in needs that shortly before, the council had considered to be beyond their legal remit but now do.
            * The need to go through the NHS Continuing Healthcare appeals process still remains. But positive action taken against the council might well win the day if their decision to accept the funding is theirs/the patient’s is adjuged to be beyond that remit.
            It seems to me that this is the best way to go about a pre-emptive court case, because one cannot do such against the NHS and in any case they will cloud the issue with the medical issues as opposed to the genuine level of all of the needs, social or health that is supposed to assessed as to their Nature, quantity, quality etc. .
            All the best.

          • Chris-G 11 months ago

            To follow up my last, Paul, You appeal to the NHS for decision they have made.
            There is no appeal procedure for the decision that the Council makes….. The decision to accept the NHS’ usually faulty decision.
            That is what should be challenged…, The council’s decision that care needs are within their legal remit.
            And because here is not a right of appeal to the council…. Complain and then prosecute.
            They have no defence within a defined process as part of the NHS Continuing Healthcare National Framework to protect against that… or so it seems to me.

          • Chris-G 11 months ago

            Some more logic…… Judicial Review (JR) is time constrained from the date of the original disputed action. It is difficult to even get a JR against an NHS Continuing Healthcare funding decision while including the NHS as respondents. It would be quicker and simpler to ask for JR against the council’s position in making their decision to accept the NHS’s decision, a clear copy of which you hold, because they do not have (or appear to have), the same protection (within the National Framework), in regard to answering appeals…. Their decision to accept the care needs could possibly be Judicially Reviewed in an application made very soon after the NHS’ refusal letter is received.
            This I believe, is a route that needs exploring with a Barrister.

    • Chris-G 11 months ago

      Jenine.
      The IRP can deal with matters of relevant law. The Standing Rules Regulations etc. for example can be used to reinforce an argument. If they (as they will) try to fob you off, then having stated that law is being broken you have to have the flexibility to demonstrate that it is also against the framework rules that they can adjudicate on.
      To explain with a single example… even using criminal law as a starting point to state that for the local appeal to have ignored the civil law that requires a Multidisciplinary Team (MDT) to consist of more than one person; and to then add that if the ignoring was deliberate then Fraud has occurred and if it was negligence then it was surely misfeasance in a public office.
      Then when such matters are brushed aside, you need to reiterate and link the matter by mentioning the lawful form and the framework description of a MDT.
      And then reiterate that to have ignored your appeal observations made in the same vein, was tantamount to Fraud or Misfeasance.
      In short you can get them to listen to the legal argument by linking it to the misuse or ignorance of framework rules.
      I don’t understand how you can pay a debt to a council ,upfront…… If money was owed and the assessment process was genuinely unlawful or seriously flawed, or even if the appeals process was incomplete, then the Council can threaten but not act…. You cannot take a council to court or the NHS either until the appeals process is exhausted. What is sauce for the goose is sauce for the gander. and local council lawyers chasing cash (without CHC knowledge and skills), eventually get it that they will lose in the court once the NHS who could as easily owe the money also in the same case, face a judge to explain how they have made a decision without following the process lawfully. How they have made the council act unlawfully. How the council has acted unlawfully when refusing to perhaps appeal on your behalf using their own procedures.
      Then of course the council loses also because they are only then able to be shown to a judge to be providing funding and care that is beyond that of Ms Coughlan’s care. (her case is a legal precedent and her needs when compared with your loved one’s would certainly be less and the Framework does clearly state that her needs are beyond the legal remit of a council to provide.

      • Paul 11 months ago

        Chris – As you know this is both incorrect and correct at the same time – The IRP rules state that they will not discuss the Law – However I am sure they know the law and raising the fact that to fail to award at that point would undoubtedly be unlawful is pretty wise !! All CCGs commit fraud & breaches of HRA ‘unavoidably’ on a daily basis – When they do this those staff members are committing jailable crimes

        • Chris-G 11 months ago

          Here’s a list for some attempt a brevity Paul:-
          Jan 2010 Three copies of Decision Support Tool (DST). 1 Handwritten: 1 Almost exact Typed Transcript: Made by Multidisciplinary Team (MDT) to FUND.
          * Primary Care Trust (Now CCG), Panel wrote own DST declining Funding.
          * They also typed their ‘rationale’ for refusal. Then over ruled themselves in pen to award TEMP’ FUNDING.
          2010 Three months review. Panel member that created false DST undertook review.
          * She used false DST as the basis and attempted throughout to lower scores that were already false.
          * Told if she did not pack it in we would take matter to the Police, She created an identical DST of the false one.
          * Her rationale stated that funding would be short lived.
          2011 Same ex Panel now assessor formed MDT and reassessed.
          * Domains argued by Social and not agreed at MDT.
          * DST sent to Panel with question marks and no recommendation but mentioned inability to agree.
          * Panel completed DST by striking out the higher ‘SEVERE’ scores that should have been the default position.
          * Panel Chair even initialled his changes. Then created his own DST to hide his changes.
          * Panel Chair wrote internal NHS accounting forms to alter existing funding. Stating ‘no dispute’ at MDT.
          * Three different DST copies were used here. 1 for Social: 1 for PANEL: 1 by Panel as sent to us.
          * Police Financial Crimes Unit. Wrote. ‘There is Prima Facie Evidence Of Forgery And Fraud.’
          * Police eventually (2 years) gave up because they did not have time for two cops to learn the National Framework.
          * Council chased our refunding. Told over and again to take us to court. They never did.
          * Council warned that they had been defrauded according to Police.
          * Social Worker investigated without seeing our evidence replied: ‘I cannot find evidence in our files’.
          * 2013: Independent Review Panel (IRP) refused to discuss Forgery/Fraud. But had to accept that it was a very risky breach of procedures.
          * IRP told that to failure to overturn this would be to become complicit in the offences ‘after the fact’.
          * IRP had to increase domains under disagreement at MDT and censured the NHS for the breaches.
          This is just one of my relatives under the regimen and for only a period of around a year. As the bottles state….. ‘Now rinse and repeat’.
          This kept up until the last in April 2017 for my mum.
          * MDT agreed funding with their first and last words of assessment.
          * Commissioning Support Unit manager altered DST and sent his version and recommendation to CCG.
          * CCG manager declined to continue funding based on falsified evidence.
          * Social Worker never got a copy of the altered DST. Was holding the original DST and agreement to fund.
          * Social refused to appeal in own case.
          * Social immediately invoiced for care.
          * Mum passed away (within days of the refusal to fund) due to inability to eat due to Alzheimer’s & aspiration
          * 1 of 4 short lines of the rationale stated ‘There is no evidence of food aspiration.’
          * DST stated several times that she had been hospitalised just days before MDT for aspiration.
          * Mum was on ‘Fast Track’ whilst being fraudulently refused CHC due to a false DST and recommendation again.

          • Paul 11 months ago

            It’s the Wild West – I don’t buy that NHS Continuing Healthcare (CHC) teams are ignorant of the Law – it takes little time or effort to see Pam Couglan’s level of nursing needs albeit it is deliberately ‘missed out’ of the National Framework. It is specifically mentioned in last line of AppB that her needs were “clearly of a scale beyond the scope of Local Authority”. It’s the only salient line in the thing. Virtually everyone ‘qualifies’

          • Chris-G 11 months ago

            I agree. But the Framework is the NHS’s (well ignored), Bible. It seeks the non existent Primary Health Need. All needs relating to the care of a sick/injured/diseased person are the responsibility of the NHS. At least the definitions state that.
            The matter of the Coughlan case was an argument with the Social Services. It is no coincidence that the assessment process is led by the NHS even though the Coughlan case established limits for Social Services. It is a deliberate attempt to make one organisation compete with the other to prevent illegal acts in decision making whilst making one (ironically; the NHS), more dominant and better resourced.

    • Chris-G 11 months ago

      No Jenine, I wouldn’t pay it….. We are still intermittently arguing after almost two years since my FiL died. The amount is considerably greater than 10k. We refused to pay since a lone assessor recommended to remove his funding back in April 2013. He was awaiting and putting off re-amputation of a failing leg amputation that due to infection clouding his mind (and intermittent MRSA that held up the op’), kept causing him to change his mind (without anyone telling us). Then he collapsed after the eventual re-amputation failed and they sent him home to die with two inches of thigh protruding from his exploded surgical wound. (We saw it explode when the stitches began to be taken out.). Liver cancer and general decline due to infection and the the need for repeated amputations and repairs did for him and all while his needs were adjuged by a lone assessor to have been within the legal remit of an absent social worker, to provide….. Yeah Right!…..

  24. Shirley L 11 months ago

    Hi everyone.
    Long story short I am almost 5 years into this process. Went to Independent Review Panel (IRP) last October and most of what was discussed never made the report. They very conveniently left out anything that would have been seen as favourable to my Mum’s case and when I pointed this out to the NHS England representative I was told that “the report is not verbatim”!!! I then pointed out that if the report also represented the minutes of the meeting, (which they said it did) then it should at least be an accurate account of matters discussed. My case has now been with the Ombudsman for 7 months and just heard, surprise surprise, “complaint not upheld”! As a very brief summary Multidisciplinary Team (MDT) meeting took place January 15, Mum’s weightings 2/3 Severe 3/4 High and the remainder Moderate and Low. These weightings were then lowered at a closed door meeting 6 days later, for reasons that have never been explained other than a fabrication of intimidation by myself because I dared to produce a copy of the National Framework and questioned what they were saying, especially regarding well managed needs. The original Decision Support Tool (DST) documents which I watched both the nurse assessor and Local Authority (LA) representative have (by their own written admission) been destroyed so I have had no chance of proving what the original weightings were. The IRP flagged up that the fact that the nurse assessor destroyed the original DST would not have passed an audit trail, however they have done nothing to address this issue. I wonder how many others they have done this to. The Ombudsman has also done nothing to address this. Following his draft report he invited me to let him have my comments. I sent an 11 page letter detailing failings in the process, ie the LA representative not knowledgeable regarding my mother’s needs, no coordinator assigned, weightings lowered with no explanation, and the original DST destroyed/ not kept by both members of the MDT.He has refused to comment on any of these issues. This is all apparently fine with the Ombudsman!!!
    I am now starting a further complaints procedure with them. My advice to anyone approaching IRP is to take very detailed notes and / or record the meeting, as my experience is that not everything discussed will make their report, especially if it is in your favour. The saga continues. Any pointers of how to approach the next step would be appreciated. I understand that I can request complete electronic copies of mum’s files from both the LA and CCG but am unsure how to do this.

    • Paul 11 months ago

      Shirley what is your mothers condition ? This doesn’t make any sense whatsoever – are these scores yours or theirs ? What was the Ombudsman asked to look at ?

      • Shirley L 11 months ago

        Hi Paul

        Unfortunately Mum passed away in August of last year but I have continued with the fight because I felt what the CCG had done didn’t ring true.
        Mum had late stage Alzheimer’s, heart failure, atrial fibrillation, osteoporosis, was doubly incontinent and had numerous bouts of thrush, odeoma to her legs on a regular basis.
        I attended the initial Multidisciplinary Team (MDT) together with one of Mum’s regular carers. Exactly what I have said happened. The MDT agreed weightings at that meeting albeit a difference of opinion regarding behaviour domain. Weighting all agreed otherwise . I even asked them to reiterate at the of the meeting to make sure I had it right. The next thing I know is that they held a closed door meeting 6 days later to which I was not invited, they informed my advocate the day before, but had no intention of letting me go to that meeting. I have protested at local resolution, local panel review and Independent Review Panel (IRP) to no avail. The reason the CCG said they held a closed door meeting was a total fabrication of intimidation (yes , that old chestnut!). Weightings were pretty much all lowered at that closed door meeting, some by more than two levels. No explanation given.

        I requested copies of both nurse assessor’s and LA rep copies of the Decision Support Tool I saw them both complete at the initial meeting, I know exactly what weightings Mum was awarded . However both copies were, as I said, both lost/destroyed/not kept … very convenient of course. I have subsequently got nowhere during the appeals meetings. It was flagged up at IRP but they know exactly was has gone on here as do you and I !!! IRP made recommendation that CCG keep original documents in the future. Hardly helps my Mum, and of course they will probably do exactly the same thing again.

        All of this pointed out to Ombudsman but he gave me no option other than to investigate my complaint regarding procedure in a form that just disputed domain levels and that I felt Mum’s needs were above legal remit of social services. He has of course agreed with IRP that Mum did not have a primary health need and has done nothing to investigate any failings in process. I am naturally going to challenge this.
        In light of the National Audit Office report in July almost all of the things listed in their concerns happened in our case. How are they getting away with this???? This whole scenario is a nightmare. (Hope this makes sense). I will add the IRP raised some of the weightings but they were never going to put them back up to those agreed at initial MDT for obvious reasons!

        • Paul 11 months ago

          Simply the they get away with whatever they can until their actions are assessed against the law – it’s quite honestly the Wild West – The National Framework has no legal basis and is used by CCGs as a defensive tool to avoid paying for care – have you compared your mothers position against what happened in the Pointon case ?

          • Shirley L 11 months ago

            I have come to that conclusion too Paul. Thanks for the suggestion re. Pointon case. I know of it but will give it a thorough read. . As I have said before on this website this whole scenario is a National disgrace. Huge thanks to Angela for keeping the momentum going.

          • Angela Sherman 11 months ago

            Thanks for your kind words, Shirley.

      • Dom 11 months ago

        Hi Shirley, Sorry to hear your struggle and I am not surprised by the CCG’s actions as I am experiencing what I believe to be a whole tale of potential failures with the of CCG and NHS England, by the sounds of it they have already informed/appointed their solicitors even prior to IRP meeting.

        In terms of retrieving data I would certainly advise doing a Subject Access Request (SAR) under the 1997 data protection act. its likely to be £50 for NHS and £10 for Local Authority and if they comply then you should have every document related to your mothers case. You can also request the case file under the ‘Access to Health records’ under the Access to Health Records Act 1990 which I do not believe there is a charge.

        As I said, If it was me I would issue SAR’s to both CCG and LA as they would have a deadline of 40 days to respond under the Information Commissioner’s Office (ICO) set criteria.

        You will probably find a template letter online and you may want to request all data relating to your mother but also yourself and anything relation to the claim.

        I would also advise you also look at the Freedom of Information Act (FOIR) as as long as the question you ask does falls under a question for a FOIR reasonable response, then the CCG will be obliged to respond.

        Apart from loosing the DST, ask for a copy of the ‘Evidence File’ and a ‘Needs Portrayal’ as they would had to create the DST upon the evidence they had gathered.

        Remember, the quicker you issue the SAR the quicker you will get the docs and I would also say you should telephone the ICO and get advice on the lost or destroyed data as I think it should of been held on file for at least 6 years before being destroyed. They are really service helpful and will provide you guidance.

        I hope that helps
        Best wishes
        Dom

        • Shirley L 11 months ago

          Thank you so much for responding Dom.
          I am very grateful for the advice and will act upon it ASAP. I cannot express how useful this website has been to me and it is good to know that there are people out there willing to offer help and advice. My sincere thanks to you all.

          • Angela Sherman 11 months ago

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

          • Paul 11 months ago

            Just keep on keeping on – Remember nursing care is free always has been and always will be unless they change the law – the national framework assessments panels are all smoke and mirrors designed to hold you back – always attack from the angle of what cannot legally be provided by the local authority and use the case law available

    • Chris-G 11 months ago

      Shirley,
      Sorry about your mum.
      However, to answer one of your questions.
      Make a ‘Subject Access’ request for her DST copies in electronic and paper form from either laptops used or the central servers upon which they were likely loaded. There are likely paper records filed too. Also ask for the minutes of the assessment meetings, if they kept a record.
      Ensure that you request explanations as to the reasons for (if) any excluding or omitting of data and an outline of what that excluded data record was about. To explain: My CCG/CSU could not format and print the original typed computer copy of the DST. Nor could they send it electronically. The second copy turned out to be opened for around 15 hours straight from the time of it being first opened (according to hidden metadata on the file). I concluded that the assessor had recreated the DST from memory to create version 2 that I was sent.
      Also request any and all references to her name and/or NHS number in both electronic and paper form. This should include emails too. Such as between managers and the social services.
      The right to this data is enshrined within the Data Protection Act. I would insist that as you are executor that you are entitled to see it. Do this same thing from the Social Services too.
      There will be a cost for each set of data and the internet will confirm the maximum charge.
      They can refuse if to do the work exceeds a certain number of hours…. So don’t let them confuse supplying her entire medical record with what you are requesting….. Keep it relative to CHC assessment matters only.
      You mentioned an advocate during your description…. If they were a trained professional then they should have been invited to the MDT meeting held 6 days after the original assessment.
      I note that the domain scores were downgraded at the second meeting. You need to discover if this was solely attended by the MDT members of the original assessment because for anyone else to be involved is a local procedure and it is not a correct procedure. The higher of disputed scores at a MDT assessment should be accepted and only if exceptional circumstances have been outlined, could anyone other than the full (original) MDT change them. For anyone else to change a MDT’s recommendation (even to lower the default raised argued scores), is to break the rules. It is potentially criminal too. Money is involved in the outcome of breaking those rules and that is Fraud.

      • Shirley L 11 months ago

        Hello Chris
        Thank you so much for your comments and suggestions . I have today received a complaint form from the ombudsman’s office customer care team, which will give me the opportunity to present any further evidence which may get them to change their decision and you have given me plenty of fuel for the fire. It is my opinion that something very untoward has gone on throughout this whole process and I was at least hoping for some fairness from the Ombudsman but it appears to be a case of same old same old so far ! I still have plenty of stamina for this and am not down and out yet. This has become a matter of principle!!!

        • Chris-G 11 months ago

          Hi Shirley L,
          If you use the form, I would suggest that you are not led by it. Use ‘see attached page (x)’, etc. and then avoid the medical conditions in favour of naming them and then breaking down the care needs (so called social too), into constituent parts. Feed in the positive observations of the ‘fake’ DST where it helps. Argue the fake (with common sense/evidence), when that helps too.

          Make as much of the procedural failures (one at a time) even if you have to keep repeating the entire law or Framework rules broken. (I use italics and bold for references within the body of the page/paragraph). This makes the case that if an action in part, is against the rules the rules must be outlined. If another part of the same action breaks the same rule, then include the exact same reference. Other failings later in the ‘appeal’ might well require exactly the same reference. (I do this because so many decision makers fail to look at appendices and enclosed references). As such the wordy document you create cannot be ignored or misunderstood. Do not be worried if it numbers dozens of pages….. If it is all relevant then a parting shot could be to mention that none of this process to decide on needs is adjudged so far to have been complex or intense etc. So why is the appeal enclosed so necessarily detailed and complex? And why is it so much more detailed than the original DST? And why were so many rules/laws broken, if understanding and correctly applying them is not complex or intense?

          • Shirley L 11 months ago

            Thank you so much Chris. That’s very helpful. It’s kind of you to spare the time to provide me with this invaluable information. It’s such a minefield!

    • Chris-G 11 months ago

      The Ombudsman has made a potentially fatal error here regarding the destruction of the original DST and council assessment copy…..
      q. Was that the copy that was altered six days later?
      q. If not then was it the copy that the decision maker used to refuse funding?
      q. If a second copy was presented to the decision maker then the decision made was not legally made because the Framework requires that the DST created at the MDT assessment (that included everyone) be used to ‘inform’ that decision. Note: You formed part of the MDT as a representative. As a non professional, your scores should have been noted even if later ignored during the private session that should have included all professionals. (Even care home professionals in my experience, get to work on the final MDT domain scores). To alter matters without their presence is an error.
      q. Was the destroyed version the originator of the copy sent to you in refusal to fund?
      q. If not then were you told a lie regarding the outcome of the assessment?
      Comment. The Framework does not allow the alteration of a DST. However, extra work can be done by the original MDT (including professional advocates too) but that work should not be to disfigure or to remove any part of the original DST because some of what is recorded is your and you apparently missing advocate’s input. If it is removed or ‘enhanced’ at some later date without your acceptance, then your words have been falsified.

      There is so much more to this.

  25. Jenine 12 months ago

    I think Chris G’s handwash scenario makes the key factors clearer. But they insist on all key factors applying, not an And or Or. Has anyone tested the belief that you cannot take to Court without going through the entire arbitration process.Surely the courts have to allow some reasonableness of upwards of 5 years. For instance for a car insurance complaint you would write to the insurer who has to reply within around 3 weeks, then arbitration if you are not happy, this IS completely independent. Court action could follow that. This whole process could take you around 3- 6 months. I know I used to work in insurance. So if we are given a date for IRP around a years time, we will test this for you, without a solicitor since we know more now than any solicitor could do. It is up to the Courts to decide whether the arbitration process is long enough. We have had enough and are at breaking point.The Local Authority still want the “money” for care and are using bully tactics despite being out of time to sue. If we spend the money paying lawyers then so be it. Then, if the case is to be heard before IRP, then I very much doubt they will want to waste thousands on lawyers, we will see.

    • Angela Sherman 12 months ago

      Keep in mind that with the 4 characteristics that are considered as part of a Continuing Healthcare assessment (Nature, Intensity, Complexity and Unpredictability), you only have to show characteristics of one of these, not all of them.

      • Andrew 12 months ago

        And the “nature, intensity, complexity and/or unpredictability” criteria overcomplicate this entire process. It was a throwaway comment made by Lord Woolf who gave the leading judgement in the leading CHC case of R. v. North and East Devon Health Authority Ex Parte Coughlan. The Court of Appeal did not rely on this criteria when they delivered their judgement.

        The actual test formulated by the Court of Appeal was what is the quantity and quality of healthcare need required by the individual? And is it lawful for those needs to be met by a local authority?

        In Coughlan it was agreed that Ms Coughlan was receiving low level, “routine” nursing care. Her health needs were at the time of the judgement “stable.” The Court of Appeal found she was eligible for CHC.

        I am not a fan of the confusing “nature, intensity, complexity, unpredictability” factors. They do overcomplicate the real issue. But I guess we have to live with it as the people who assess have to do so.

        • Paul 12 months ago

          In respect of Ms Coughlan, her needs were clearly of a scale beyond the scope of LA services……

        • Chris-G 12 months ago

          It’s unfortunate that the Decision Support Tool contains the criteria for eligibility because the Standing Rules Regulations at Sec 6 (LAW) mentions it’s mandatory use. So as far as ignoring the criteria, they are, without definition, actually (by implication only), written into law.

    • Chris-G 12 months ago

      Jenine,
      This is why I often fight with the council as well as the NHS.
      They want paying for what they have spent. Yet they did not appeal matters in their name, when asked by us, even though adequate grounds existed for them to do so. In our area, they twice failed to even have an agreed process for disputing from before 2009 until mid 2014.
      Such example for their appeal being, the clear nonsense of the NHS excluding one eligibility criteria by using another to excuse the action. (The complex but not intense rubbish).
      Or the NHS overturning the council’s recommendation and written statement that care needs were beyond their legal remit to provide for.
      This is why we never repay the council and await the court action, which although often threatened, has after many years (9), so far failed to materialise.
      We actually plead with them to take it to court because it is easier to attack from within a legal defence. (I usually include a written ‘skeleton argument’. To explain: Trying to bring a case against the council is complex. But turning up with legally assisted counterclaims and demands that the NHS are also there to prove that they do not actually owe the funding in our place, are all complexities that the council do not want.) Also. Look up your rights on the internet, to claim costs in your own right too…… Something like £19.00 per hour for your relevant time which could be argued in the circumstances that lawyers do not know this stuff, also includes much of the study time required to gain your competence in NHS CHC matters.
      The matter has to be proven by the council (and the NHS if you call them to appear too), who will have to answer before a real judge, why very obvious wrongdoing was not challenged by them and by so failing, have they spent taxpayer’s money correctly? Are they invoicing with accuracy? Does having a refunds policy in case they are wrong actually admit that they probably are? etc. etc.
      Some form of arbitration and meetings regarding the identification of only the issues in dispute will be required by the court before a hearing, at which point you will get a genuine council lawyer and not a teenaged ‘help line’ lackey, in front of you.
      They would be stupid to fail to see the stupidities of the people they represent.
      They would be equally stupid to continue to a court case, unless they genuinely discovered some major flaw in your case. At which point it would have to be made obvious to you. Thereby enabling some manoeuvring if you had merely erred in your choice of events and/or words and/or court precedents.
      In a civil court accusations against specific individuals, of criminal acts are entirely possible but will be ignored except so far as the criminal act when described, is generally a civil offence too. It is also possible to require individuals to attend if they had a role in any kind of decision making or involved in wrongly applying the Framework.
      And to agree with what you wrote: (and as I was advised by solicitors), it might well be better to spend the money defending the money, rather than simply paying on demand of the council.
      Lastly. If you do not have financial power of attorney you are generally protected when acting in a best interests capacity, so that no cost accrues to you if you act to protect the money. If costs or awards were made against you… then in fact they would be the responsibility of the person being represented (or their estate), and not the representative.
      That is how it was explained to me. But wisdom suggests that current legal advice might be sought to confirm that liability issue, at least.
      My position is to await the council court action and after any meetings to establish disputed ground, I would create my own ‘skeleton arguments’ (not forgetting the references in various annexes). Require the NHS to attend on the grounds that it is they that should have paid and not us. And wherever complicated as far as timings and court rules are concerned, I would employ legal services to carry out that part of it.
      Some of what I write is rhetorical. I do have sound reasons for it, too long to explain.
      However, it is also possible and legal to get a legal opinion regarding your defence from a barrister without doubling the cost and involving an instructing solicitor…. You would be doing the instructing and informing, if you get me?

      • Andrew 12 months ago

        Chris

        In our case the person from social services who was part of the MDT and DST we are challenging wasn’t even a qualified social worker, but a general nurse. We have found out subsequently that this individual completed a social services report on the same day that the MDT completed its assessment and the recommendation to the CCG on our Loved One, having agreed with every recommendation made by the nurse assessor. This person from social services who was part of the MDT says (having been informed by the nursing home that our Loved one has assets) that our Loved One should self fund.

        • Chris-G 12 months ago

          Andrew, if both MDT members were from the same profession (and the Council’s nurse was not trained in providing social services in accordance with their own regulations), then I might argue that it was an illegal assessment.
          The Framework requires differing medical professionals. At other points it states that ‘crucial’ face to face meeting between the social services rep and the NHS rep be undertaken at the MDT stage. It also requires council qualified staff to remove funding as part of MDT.
          No one should be deciding how you pay for care at the time of the MDT meeting. It is needs that should be being assessed.

          • Andrew 12 months ago

            Thank you Chris

    • Chris-G 12 months ago

      Jenine.
      Another problem with going to court, perhaps for Judicial Review of a bad series of decisions etc., would be that JR requires that all of an established appeal procedure be gone through before seeking legal redress.
      This has been confirmed in failed JR requests by the judges involved.
      However; as far as if, (non criminal), law breaking that is clearly expressed is denied by untrained non legal personnel, I have often wondered if that would put matters beyond the Local and Independent Appeals Process. Because they usually write that they cannot deal with matters of law, only the Framework etc.
      Especially as my experience of Independent Review Panels is that they refuse to discuss breaches of law at all, unless, (I still do both), the breaches of law are expressed as breaches of procedure.
      I use phrases such as. ‘they broke the law of ZXZ etc. Which point is entirely Judicially Reviewable according to lawyers, but as this panel will not deal with such accusations, I might point out that the problem is also a breach of QWQ etc. within the Framework. Perhaps the existence of the law is the reason for the existence of the rules that have been so cavalierly treated by the NHS/Council’.
      You can do this for almost every infraction of Framework rules because they are usually supported with civil court precedents, administrative or criminal law.
      For example: our last refusal to fund by the CCG was left unsigned and without even a name of the decision maker typed at the bottom.
      Administrative law states that it is not a legal decision simply because of that failing or desire by the CCG to avoid naming the decision maker who will be easily contactable directly, by their name and the CCG/NHS email tags, common to all of their staff.
      You get my drift…. Laws are broken and without making a threat at Independent Review Panel (IRP), you are putting the IRP chair (often a lawyer), on notice that you will eventually go to court (if they ignore you), and on some very safe grounds too.

      • Paul 12 months ago

        Never been tested – a class action / deputisation may be the remedy here – The NHS is operating outside the Law and Joe Public is denied speedy resolution by an institutionalised system of misdirection deliberate delays & outright lies.

        • Chris-G 12 months ago

          It might be possible to challenge the Framework on an academic basis. It would require Judicial Review (JR) of each and every annoyance within the Framework without actually personalising it. (Because the appeals process is supposed to allow you to do that).
          However, without the ability to demonstrate personal incidents that the Framework cannot cover or to demonstrate with cases how it is open to repeated abuse, then JR becomes impractical if not impossible. Perhaps I am wrong but this is how I see it. There again it does not take government very long to rewrite law when judges over rule their scams.

    • Andrew 12 months ago

      Jenine

      Chris is right. The National Framework is crystal clear that the nature and/or intensity and/or complexity and/or unpredictability of the needs may be sufficient to make someone eligible for CHC.
      The various criteria are NOT cumulative.

      As the National Framework says “Each of these characteristics may, alone or in combination, demonstrate a primary health need, because of the quality and/or quantity of care that is required to meet the individual’s needs. The totality of the overall needs and the effects of the interaction of
      needs should be carefully considered.”

      If a clinical commissioning group is suggesting the factors must all be present, they are misapplying the Department of Health guidance, which I would hope gives a ground to appeal.

      • Paul 12 months ago

        The National Framework is bunkum – it’s a tool that looks like it’s the definitive rules but it’s only for the NHS to misdirect delay and confuse people – The law is what applies

        • Chris-G 11 months ago

          I agree Paul, I am lucky in that my earliest training was in Police work. And as such I learned to read and apply the law and comprehended that Law also has intent (that can be different to what is written) and that it alters over time due to additions/new Acts and case law created by judges.
          However, it is hard work but not impractical to use the nonsense within the DST and the Framework against them. Especially if you first comprehend the law within sec 6 of the Standing Rules Regulations. You can make accusations in appeal/assessments such as: ‘The standing rules reg’s states x and you have done z’.
          Even having perhaps made accusations of criminality, you can also state that the failing was at the very least a ‘Procedural Error’ which is required to be addressed within appeals.
          You could ask:- ‘You are not behaving lawfully. Go on explain how what you said/wrote is a lawful action?’
          Then repeat over and again the same mantra in response to their many failings. To further explain:- There are many other laws involved that are not referenced within the Framework. Altering a DST is stated to not be possible. The explanation that to do so is criminal fraud, is not referenced or even hinted at. Nor is the fact that someone has altered/corrupted data, and that is an offence under the data protection act. I would imagine that to falsify a medical record is in there too. I tend to ignore the ‘Professional Opinion’ malarkey that might give a manager a get out because that right to opinion is clearly only that of the MDT. Others can only act in clearly articulated ‘exceptional circumstances’ to return the task to the MDT for more work. The rules 91 at page 31 after all do state that ‘A decision not to accept the recommendation should never be made by one person acting unilaterally.’ This happens regularly at my CCG by virtue of a single manager making the decision that is often (and in my mum’s case too), an overturning of the MDT recommendation.
          An even handed explanation complete with the idiots guide to the criminal law included often makes even the most recalcitrant NHS manager start to wonder.

    • Jim 11 months ago

      ref Jenine’s posting. By applying a quantitive and qualitative test to the four characteristics the NHS assessors are, as Angela has indicated, getting this wrong. It all depends whether you’re looking at this from the NHS or the local authority (LA) side of the divide. In Coughlan, the Court of Appeal (CA) was looking at it from the LA side. It considered the extent that nursing and/or other healthcare services could lawfully be provided by a LA. It set out a quantitative AND qualitative test in order to determine the legal limitation of such provision. But the NHS assessors are looking at it from the opposite, NHS, side of the divide. It follows that, as both a matter of logic and in order to be Coughlan compliant, the test being applied must be a quantitative OR qualitative test. The latter determines whether the nursing services are capable of LA provision – if not then there is a primary health need. But if they are capable of LA provision then the test is a quantitative test – are the nursing services more than incidental or ancillary etc., This is reflected in the NHSCHC test set out in Regulation 21(7) of the Standing Rules – note the word “or” between (a) – the quantitative test – and (b) – the qualitative test – set out in that regulation. I suggest that you refer the assessors – or even the Chief Executive of the CCG – to it.

      You say that the LA wants “money” for care. it follows that its position must, by implication, be that any nursing and/or other healthcare services are merely incidental and ancillary to the provision of accommodation. And your position must, by implication, be that the nursing etc., services are more than incidental or ancillary to the accommodation. If the latter (and you can demonstrate this) then you’re right (as I and other contributors have done) to withhold payment. If the LA chase you again then you should, in order to put them on the back foot, set out your position in writing. This should set out the factual position – identify the nursing etc., (as against social care) services and the frequency etc., those services. In short, identify and quantify the services. Does the care plan (or anything else) evidence this? Follow the factual position by setting out both (a) the relevant primary law provision – S3 NHS Act 2006 – explaining that there is a “reasonable requirement ” (under S3) for the provision of both nursing (S3(c))and other healthcare services (S3(e)) and for the provision of “other accommodation”(S3(b)) in order to facilitate the provision of those services – NHSCHC is simply shorthand for this – and (b) the secondary legislation – the Standing Rules (SI 2012/2996) – which S3 NHSA 2006 gives effect to. Show here that the nursing etc., services are more than incidental or ancillary to the accommodation. If the person entered a care home in order to be provided with nursing and/or other healthcare services which the NHS could (or would) not provide to that person in his/her own home then the services are more than ancillary to the accommodation. This is because the provision of nursing etc., services constitutes an aim in itself than rather being a means of better enjoying the accommodation. But, if on the other hand, they are a means of better enjoying the provision of accommodation (and which includes social care) then the services are merely ancillary.

  26. John 12 months ago

    There appears to be a lot of confusion on here about the Continuing Healthcare (CHC) appeal process, with people conflating Independent Review Panel (IRP) with Local Resolution (LRM). These are completely different stages of the process and are not interchangeable.

    The fist stage is so-called “Local Resolution”, which usually involves meeting with the CCG/CSU that made the original decision of ineligibility. If the CCG/CSU deems it necessary, the case will be returned to a multidisciplinary panel (MDP) which makes a further recommendation on eligibility. The person conducting the meeting CANNOT make a decision on eligibility: this must be done by a proper Multidisciplinary Team (MDT) (e.g. two nurses of different disciplines and a Local Authority (LA) rep).

    If the outcome of this local appeal is negative, then, and only then, can you request a hearing with an IRP at NHS England. You cannot request IRP before local resolution has been exhausted. And no, it is not your inalienable right to have a hearing with NHS England (*see below).

    Due to the volume of requests, NHS England now employs a Single Chair decision-making-process to sort the wheat from the chaff; if the Single Chair believes there is no evidence of eligibility, and thus no case for the CCG to answer, no IRP will be convened and you will receive a final decision at this stage. If you remain dissatisfied, you can complain to the Ombudsman, but it will only deal with issues of incorrect process, and not clinical judgements.

    Finally, people here keep referring to “law” and “regulations” with regard to the CHC process, and even a comment above about the NHS “operating outside the law”. A word to the wise: there is no legislation for CHC, only a “framework” and “guidance” to be followed. There is no litigation involved, at any stage. There have been legal precedents set (Coughlan/Grogan/Dennison et al.) following judicial review, but this is very, very rare.

    The fact remains that hardly any CHC cases end up in court because the eligibility criteria are almost totally subjective and the risks for solicitors too high . *The lack of a proper legal framework is what allows the NHS to get away with the shoddy practices described on this forum. It can be compelled to improve, but there is no legal obligation whatsoever.

    Many law-firms have tried to get involved in CHC claims and a very small minority have been successful, largely by screening cases even more aggressively than the NHS and refusing to take on any but the strongest. A great deal more have gone bust in the process because they thought they could quote the Human Rights Act and cow the NHS into submission. Not so. To suggest the NHS is afraid of getting sued over CHC is wishful thinking.

    I don’t want to defend the NHS – I think the way patients and their families are treated during the CHC process is appalling and in some cases unforgiveable – but neither do I think riling-up grieving families with misinformation is at all helpful.

    • Angela Sherman 12 months ago

      Thank you for your comment John. I understand that you are looking to clarify elements of the process, and there may well be confusion in some quarters about this, but the article here is specifically about IRPs, and it does not seek to mislead. The NHS does indeed attempt to act outside the law when denying people healthcare that they have a right, in law, to receive – and many illustrations of that are shown in the of the thousands of comments on this – and other – blogs.

    • Paul 12 months ago

      The reason they never go to court is that until you exhaust the NHS appeal process a case wouldn’t be heard – HOWEVER once you get to the Ombudsman the law finally comes into play – They will not risk a case in court as it would set a precedent – the shoe is on the other foot…. Rather than ‘rule’ the CCGs are told to ‘look at it again’

    • Chris-G 12 months ago

      Absolutely correct Angela.
      Although some of what John wrote is correct.
      However, the CHC process is actually enshrined in law John. It is called the Standing Rules Regulations. Part 6. SEE: http://www.legislation.gov.uk/uksi/2012/2996/contents/made
      It does lay out certain aspects of what is required. The only way to use the law is to establish wrongdoing within the Framework and then compare it with what the above law and often many other related laws and court precedents states. The lawyers chasing profits you mentioned do not see beyond the DST and Framework and often have little knowledge of the criminal law whilst espousing their expertise as lawyers.
      For example a council potentially breaks Data Protection Law by obtaining financial and personal data to means test, when an appeal is underway. Because when it is won it exposes the lack of actual need to have collected and processed the data. The logic for that argument is that they never needed the data or to process it until appeals were ended. So it is a matter of timing and not an automatic immediate right in law for them to acquire the data and recharge their own costs.
      In major infractions of the Framework there is obvious misfeasance or procedural irregularities that can be represented in slightly lesser tones during local appeals, not that they will listen…. That is why I always write local appeals in great detail and include all legal infractions and references to the laws and rules broken, as if for the end user, the Independent Review Panel that is often (in my experience), chaired by a barrister who well might understand the risks if matters ever got to a court.
      The human rights legislation does in fact require independent review of decisions if requested. (This does not mean an entire panel either). That is why it is included (if messed about with by those that manage the things), in the National Framework as a right.
      External law is obvious throughout the Framework. The trouble is, the rule breakers do not even understand for example, that for anyone other than the original MDT to alter or rewrite a DST and it’s recommendation (a regular occurrence), is in fact fraud and forgery in the purely criminal sense because of the potential of monetary loss or savings to their employer.
      Using all of this external law is allowable in appeals to Independent panels because even though they will deny any ability to deal with criminal complaints, the complaints especially if couched in this form are in fact severe procedural errors. For an IRP to ignore such failures that you identify to them as crimes, or civil offences would kick the door open to actually getting into a real court and the NHS and councils do not want that because of the risk of new precedents being set that others could exploit. .

      • Paul 12 months ago

        Do NOT confuse rules and regulations with the LAW !! This is precisely what they want you to think – it’s a massive smokescreen – The Law is Coughlan Leeds Ombudsman & NAA 1948

      • Andrew 12 months ago

        Chris
        Thank you very much for this comment.
        We are very interested in what you said, particularly where you say “for anyone other than the original Multidisciplinary Team (MDT) to alter or rewrite a Decision Support Tool (DST) and it’s recommendation (a regular occurrence), is in fact fraud and forgery in the purely criminal sense.”

        We are going though a local resolution process. We are at the first stage of the process and the clinical commissioning group has got a senior nurse who was not part of the original MDT to review the papers (the nurse has not seen our loved one – they cannot do so now as out loved one died it has taken so long to get the CCG to conduct the appeal). The nurse reviewing the papers has in some instances scored our loved one lower than the MDT that was conducted!

        So we would be very interested to know on what basis we can claim that for “anyone other than the original MDT to alter or rewrite a Decision Support Tool and it’s recommendation (a regular occurrence), is in fact fraud and forgery in the purely criminal sense.” We can’t see anything in the Department of Health’s National Framework that would allow us to make such a claim, nor in the general law. Isn’t the nurse who has reviewed the papers simply putting a contrary viewpoint (even if it is wrong)?

        Thank you

        Andrew

        • Paul 12 months ago

          Always conduct your own review – then hand it to them – they will never do a proper one until they ‘have’ to – you aren’t up against the law with the CCG you are trying to get through gatekeepers – your task is to point out that tonfail to provide funding for nursing care would be fraud (as it is)

        • Chris-G 12 months ago

          Andrew. and others too…. Use your internet browser or word processor to read a Framework Copy and then use the ‘find’ function….. Type in a word, phrase or number and it will take you to the part that is relevant. You can search other documents such as the blank DST notes too. For example the 2009 Framework contains 8 references to the word ‘Exceptional’ in various causes. The 2012 does it 20 times.
          Clearly written within the Framework there has to be ‘Exceptional Circumstances’ expressed by the decision maker. (They cannot add this after their decision either.)
          ’80. Many PCTs use a panel […] Only in exceptional circumstances, and for clearly articulated reasons, should the multidisciplinary team’s recommendation not be followed. A decision not to accept the recommendation should never be made by one person acting unilaterally.’ The law has not changed so the 2009 notes would likely apply in a court. However the same thing is written within the latest Framework model at para 91 page 21.
          Nowhere does it state within the Framework the legal or criminal ramification if instructions are disobeyed and I take that to be that to include every section of the criminal and civil law as references within this would make for an even more unwieldy set of instructions….. The key here is instructions…… If I instruct you then you do it! I do not have to explain why you must do it in only that way. If you want to insert the law as a reference within appeals, as I do……. Then look up the theft act, the fraud act, and even have a look at the DPP’s boundaries and practices for prosecution in relation to those acts of Parliament. There are also pages on the internet about legal decision making and the roles and responsibilies of decision makers and of course court cases that indicate if decisions of a similar nature are properly made. If you have experience of the Data Processing Act then by all means read it for transgressions……. It is a bit of a bu@@er to comprehend it unless you have had to know it for work etc.

          • Angela Sherman 12 months ago

            How to find what you need in the Continuing Healthcare guidelines: http://caretobedifferent.co.uk/find-what-you-need-in-continuing-healthcare-guidelines/

          • Andrew 12 months ago

            Thank you.

            Andrew

          • Andrew 12 months ago

            The National Framework says at page 16 paragraph 35 “The degree to which needs fluctuate and thereby create challenges in managing them. It also relates to the level of risk to the person’s health if adequate and timely care is not provided. Someone with an unpredictable healthcare need is likely to have either a fluctuating, unstable or rapidly deteriorating condition.”

            Clinical commissioning groups focus on the first sentence. Effectively clinical commissioning groups say, for example, “your loved one is exhibiting behaviour which would not be normal or rational in the outside world if they weren’t suffering from dementia or mental illness, but because they are exhibiting this [abnormal] behaviour regularly or semi regularly and the nursing home staff are aware of it, it is now “predictable,” “routine” and can be managed by the staff. The behaviour is not “new behaviour” nor “rapidly deteriorating behaviour” but is “stable” and therefore we discount/dismiss it.”

            How do you deal with an argument like that?

          • Chris-G 12 months ago

            Andrew,
            The matter of the Eligibility Criteria that allow for CHC funding is a source of huge confusion (deliberate?) even within MDTs. Even without having got your head around what the terms mean, often one criterion is used by assessors and their managers to cancel the effects of another.
            The Eligibility Criteria are:-
            Intense…. and/or…. complex…. and/or…. unpredictable…. and/or a need for continuity of care. (Note this last, does not specifically demand that it be a clear health care requirement to meet this (almost hidden) criterion).
            The average NHS/council assessor does not appear to understand this and their decision making bosses always try to reduce needs by making statements (a true one in our case), such as ‘ The need demonstrates unpredictability but because the care required is not complex, the need is of a social care nature’. Or even more serious, ‘The need displays some complexity but as the care required has little intensity it is of no consequence’.
            Selecting individual needs and consigning them, one at a time to so called ‘social care’ is in fact the wrong way to assess…. According to two IRP chairs in our experience.
            The reason? It is the total needs social or otherwise that must be assessed and then the weight of need decided. To explain further: Food is a health need. Unarguable, the NHS records that fact.
            It is the way in which it is provided and consumed and the effects of lacks or provision that is at issue in CHC assessing. To piecemeal (whoops), ignore this need for food, if it displays any of the criteria whilst supporting and caring for say, drugs or cognition, would be bl@@dy ridiculous because all other care would soon become redundant, would it not?
            Another true one. ‘Behavioural needs are predictably unpredictable’. The same could be said of almost every car being driven that I observed today, yet for all of the potential predictability of every other driver’s unpredictable behaviour, I am still obliged to pay due care and attention to others that probably won’t be a problem and even being the worlds best driver, (yeah right, I hear you all say), I still require car insurance in case the predictable unpredictability comes home to bite me or them.
            Remember Andrew it is AND or OR and in any combination or alone, as far as the criteria for eligibility are concerned.

        • Chris-G 12 months ago

          To reply in greater detail Andrew,

          National Framework:-
          ‘PG 40 What should the role of the CCG decision-making process be?
          40.1 The role of the CCG decision-making processes, whether by use of a panel or other processes should include:

          • verifying and confirming recommendations on eligibility made by the MDT, having regard to the issues in PG41 below;

          • agreeing required actions where issues or concerns arise.

          40.2 CCG decision-making processes should not have the function of:

          • financial gatekeeping

          • completing/altering DSTs

          • overturning recommendations (although they can refer cases back to an MDT for further work in certain circumstances – see below). ‘

          And:-
          ‘PG 41 What are the ‘exceptional circumstances’ under which a CCG or panel might not accept an MDT recommendation regarding eligibility for NHS continuing healthcare?
          41.1 Eligibility recommendations must be led by the practitioners who have met and assessed the individual. Exceptional circumstances where these recommendations may not be accepted by a CCG include:

          • where the DST is not completed fully (including where there is no recommendation)
          National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care
          83
          • where there are significant gaps in evidence to support the recommendation • where there is a obvious mismatch between evidence provided and the recommendation made • where the recommendation would result in either authority acting unlawfully.
          41.2 In such cases the matter should be sent back to the MDT with a full explanation of the relevant matters to be addressed. Where there is an urgent need for care/support to be provided, the CCG (and LA where relevant) should make appropriate interim arrangements without delay. Ultimately responsibility for the eligibility decision rests with the CCG.’

          What I tend to do is when fully reading the Framework and DST notes or other documents, is to keep a note of the many different trigger words (Alter/MDT/CCG/ etc. you get what I mean), and then look them up As Angela has suggested elsewhere within this post, by using the ‘find’ function or a word processor or the internet browser being used.

          • Paul 12 months ago

            The National Framework is a carefully written smokescreen which allows the NHS to reach a conclusion and then for it to the ‘criteria’ It is worth NOTHING apart from the last line / paragraph in Appendix B – that line has stayed there despite two revisions for a very good reason – it’s the only link for that document to the LAW – People on here need to fight on this basis – The LAs need to be asked by what mechanism they use to ensure they are not illegally providing funding (at patients expense below £23k limit)…… Because they do it ALL the time – it’s actionable in a court of law as well – The simple truth is that if you get a Continuing Healthcare assessment I would say the chances are 98% plus you are eligible as a starting point

          • Andrew 12 months ago

            I think I understand Chris. Thank you.

            In our case the Multidisciplinary Team (MDT) that took place was a long long time ago; so long ago that it would be impossible for the same MDT to get together again because we assume they have moved on to other jobs, etc.

            It can be very intimidating when you are faced with a local review which has been done by a senior nurse with lots of qualifications and letters after their name, a senior nurse who never even met your loved one or saw the needs that you saw your loved one clearly had, who comes up with a needs profile that actually worse than the MDT (who still got it wrong on the day they met your loved one to complete the Decision Support Tool), and the senior nurse argues they would have scored your loved one even lower than the MDT.

            It makes you start to doubt yourself and think “Hmm! OK, are we right? Or are they right?”

          • Chris-G 12 months ago

            That’s the point Andrew. The current nurse assessor/NHS manager has downgraded needs and I doubt that on yet another decision, the decision maker has given a serious rationale for doing so. Let alone expressed ‘exceptional circumstances’ for so doing.
            The other aspect I mentioned was that far too often, the original DST does not contain sufficient detail (as is bourn out when the reviewer tries to downgrade what they read).
            That is why one should consider making a cup of tea for someone that could do it for themselves. Then look again at what might be required in the relevant case to make the same cup of tea. (i.e. my mum was downstairs and the staff and tea was upstairs by needing to go backwards and forwards and up and down or repeatedly doing so then the criteria are met for funding). Of course applying such nit picking to each and every need so poorly recorded within an average DST takes time to do and good knowledge (or imagination), to expand on what was originally written. One must bear in mind that there are no ‘needs of daily living’. There are no so called ‘social care needs’: Not at an individual level within the domains. All needs observed by you/family, recorded by yourself, the care home and the MDT require expanding on paper (later perhaps verbally too), so that they can have the eligibility criteria applied against them. That is what the NHS attempts to do in the first place…. Limit what is recorded in the DST (whilst also denying that it is the assessment) and then lose other parts to the needs of daily living nonsense, and what is left will never get past the criteria test of the Framework because there is so little of it. The council’s legal remit is all but ignored and so often overlooked because everything sent to you comes from the NHS. I might also revisit the above comment ‘whilst also denying that it is the assessment’. So often this is used to justify refusing to fund, ‘of course there is more to it than the DST’ and such remarks are made……. If that is true, then how the hell can they use the DST at a much later date (and downgrade needs) and make a decision if the original decision was reached using much more than the DST that is obviously not available or you would have been given the materiel?

          • Chris-G 12 months ago

            Sorry Andrew, to follow up on the tea thing.
            How often do you wash your hands?
            To elaborate: My mum for 18 months and longer was getting eye infections. It was her dirty sweaty fists and hands being scrubbed over and again into her eyes.
            My father recorded and reported.
            Little was done by the home. A bit of eye cleaning.
            My father reported that her eyes were sticking together.
            A GP visited.
            Creams were prescribed.
            Creams were ordered by nurses from the chemist’s.
            Creams arrived and had to be placed on the care plan.
            Staff had to understand their repeated use.
            My father had to ensure use. Remind existing staff. Inform temps.
            The need required inspection of the eye by nurses. Checking of date codes and reordering of the creams on prescription.
            Only the effect was treated and even so, at some complexity, intensity.
            What was missed was his repeated requests for staff to smell her hands.
            He would wash her hands daily with a bowl of water a disposable cloth and soap.
            Eventually staff began to use wetwipes to clean her hands without it doing very much to eliminate the musty smell. Once they were under instruction to do so.
            It was hit and miss as to if they did it.
            Staff began cleaning the other 50 patient’s hands before meals and drinks if my dad was about because the boss had given instructions to clean everyone’s hands.
            In short for 18 months to start and another three years before she died my dad had to argue for and then monitor the slap dash wet wipe hand cleaning of 50 patients including his wife.
            This can only have been proof of intensity in just the simple matter of the regular washing of hands. Something that is dismissed by the NHS as ‘needs of daily living’ until you get the MDT at assessments include the long winded version in the DST.
            When you wash your hands…. It is needs of daily living. When someone cannot do it and for others to fail or risk failing to do it, then infection breaks out and patient’s get sicker. The needs of daily living becomes nonsense because of the complexity, intensity implied by the risk of it not being done as much as meeting the apparently simple need.

    • May Gold 12 months ago

      One of the biggest problems with Continuing Healthcare (CHC) is that Care Homes are generally reluctant to see a self-funding resident (paying full care costs) admitted to NHS CHC which will often pay less than the full fees. The daily reports that Care Homes produce are often minimal and unlikely to show really accurate records which could be used in conjunction with CHC decisions.
      Not only are the Care Homes conflicted by the funding difference, but care staff are not necessarily trained to give full details which would require more time than is available and can be upsetting for family visitors.
      This can frequently make the difference between a positive decision for CHC funding and being denied CHC funding. This dilemma seems impossible to resolve.

      • Barbara 12 months ago

        I totally agree with you May, I am having a very similar problem at the moment. I have queried the nursing home daily records and staff have been disciplined, but it is obviously difficult for the home to admit their failings in order to support my appeal. Once an overall impression has been made by the assessor, it is difficult to change their views without specific details.

      • Chris-G 12 months ago

        And with no racist intent May, … (I have lived abroad), Foreign workers often employed with great results can be a bit short of adjectives when reporting incidents and needs and problems caused in caregiving. (I learned foreign language and Cyrillic alphabet sufficient to get by but struggled to vary the number of words especially in unfamiliar circumstances or situations).

      • Paul 12 months ago

        This is an issue for sure but it doesn’t make any difference with the supply of nursing care – it remains the law that it is free – the Local Authority cannot by Law provide for anything that is more than either ancillary or incidental to the accommodation.

        • Andrew 12 months ago

          Paul
          You are right. Unfortunately, however, the rules and say that in order to receive NHS Continuing Healthcare, a patient must demonstrate that they have a “primary health need.” Based on what we have experienced so far, doing so is usually entirely dependent on having the evidence (usually in paper form) to prove it. Care home notes – and indeed the notes of a patient’s general practitioner – through being too busy, poor choice of language, lack of attention to detail or conflicts of interest, can leave a lot to be desired in terms of providing sufficient evidence.

          • Paul 12 months ago

            Actually not really – The bar is VERY low – See last line of appendix B in National Framework – Pam Coughlan is deemed wholly in excess of what Local Authority can legally provide.

          • Chris-G 12 months ago

            Andrew, it is a two part process. One is to discover the Primary Health Need (PHN), the other is to ensure that needs are not beyond the legal remit of a council to provide. The first having little basis in law except for a short regulation and a very long Framework that is littered with informal descriptions of so called social care and health care. I imagine that the NHS train their Continuing Healthcare (CHC) nurses to do the PHN bit and totally avoid the matter of the Coughlan decision which is described law and the obvious fact that her needs are actually also described within the Framework as being needs beyond the legal remit of a council to provide. The assessment process is crudely designed to discover needs within the legal remit of a council to provide and ignore or minimise any health needs that are a risk to NHS budgets. They say they seek the Primary Health Need whereas they actually seek the social care need, neither of which is described in law. This why it is so important to describe all needs and treatment/care in great detail and to include/mention law and precedents where applicable and to challenge every breach of the rules on the run through the process right up to (a genuine) Independent Review Panel. What I find especially frustrating for Multidisciplinary Teams is to ask very many times at relevant moments, of course, …. ‘So is what you are saying above or below the recorded needs of Ms Coughlan?’ Then I might pick a short verbal fight when they get uppity about answering it. Similar practice can be used when making appeals. Along the lines of, ‘ The Decision Support Tool states zzzz, when that is beyond the needs of Coughlan. Is your decision correct in this individual regard?’ Then repeat as often as differences are discovered.

  27. Nicola 12 months ago

    It is a disgrace they way we allow people to treat our families who have paid in National Insurance all their lives and they are treated so badly. Do not give up any of you. Keep going. I fought and won eventually.

  28. CBS 12 months ago

    At the point of my daughter’s transition from Paediatric to Adult services, and having been told that she had been assessed as being eligible for Continuing Healthcare (CHC) (to nobody’s surprise given the complexities of her conditions), we were informed at 5.30PM on New Year’s Eve that “someone had made a mistake” and that my daughter was no longer eligible. They then claimed that crucial paperwork had been lost. We used Legal Aid to challenge them and it was at that point that the CCG and Health Authorities suddenly became helpful and reinstated her CHC eligibility. Though she had been allocated a decent budget, many health and social needs were not met and it became clear that the health authority had no intention of meeting those needs since they were creaming off several tens of thousands of pounds off her package because it was ‘underspent’ – Roll forward several years and up until last year, we were lulled into a false sense of security – it was – to us and health professionals alike – inconceivable that the CCG would seek to use carers instead of registered nurses. In 2015 my daughter’s Care manager finally said that she could have a Personal Health Budget. We were given an Independent Advocate who helped enormously – perhaps too much, for she was suddenly sacked. The Care Manager then evaded submitting that document to Panel until at the end of 2016, he returned with an ‘assistant’ who was clearly there to cut costs. They stated that the previous assessment was ‘irrelevant’ despite it being incredibly detailed and current. In the meantime, they illegally stopped payment for my daughter’s social activities until the assessment was completed. In June, I was told that the assessment was submitted – this was without the ratification of the Multidisciplinary Team (MDT). I was assured that my daughter was still eligible for NHS funding and would retain her nurses. At the same time, the health authority here ceased to exist and I was told that my daughter’s package would now be handled by a different body. Though the staff were the same, we were allocated a different Care Manager who promptly informed me that the last assessment had not been submitted. There was no documentation to be found but somehow they knew that £20,000 of my daughter’s former budget had been slashed. The Care Manager then asked to come to my house to meet me and my daughter – “just a meet and greet to see how things are done and to get to know you” – the day after she met us (seeing my daughter for all of two minutes), she sent me a newly completed assessment from which it was clear that she had used the previous day’s very casual conversation as “evidence’ to downgrade my daughter’s domain scores. It is illegal to conduct an assessment without informing the client first. She pressured me to sign it, but I made huge amendments and pointed out that she had not only made significant errors but had misquoted my daughter’s nurse. All the “mistakes” the care manager had made were with a view to downgrading my daughter’s domain scores. The other half of her MDT panel this time was an experienced registered nurse who also worked as a private care manager. Where she had scored higher than the assessor, the assessor refused to document the higher score. The assessor also engaged several professionals such as my daughter’ respiratory consultant and seizure specialist in seemingly casual conversation and used their generic, offhand, unguarded replies as “evidence” that my daughter had significantly reduced needs. I wrote a civil email to the assessor’s superior complaining of the non-compliance and received a rude and threatening email in return. I took legal advice and outlined the unlawfulness of the whole procedure to this superior and asked her to forward this to the CCG – but she refused to reply to me. I then wrote to the Chief Executive of the CCG and its Board, informing them of the unlawful approach of the assessor and received no reply whatsoever. I then sought legal advice and informed the other professionals that their words had been used as “evidence’ to place my daughter’s CHC status in jeopardy – they were outraged. Despite the CCG having been alerted to the unlawful and non-compliant approach of their assessor and the many errors that she had made in describing my daughter’s need, they upheld all of what she had written and refused to raise her domain scores to match the higher scorings that the registered nurse from the MDT had given her. My daughter was accorded CHC status and retained her nursing staff for the next twelve months (thanks to the legal advisor and the fact that her ensuing hospital admission negated all the assessor’s so-called ‘evidence’ but I have no doubts that they are seeking to chip away at her domain scores until they can deny her status. On that basis, I am seeking to legally challenge them still. The immorality and criminality of these people is breathtaking. It is my belief that the health authorities, the CCG and governmental departments flagrantly flout the law because there is no accountability – in fact, the more they do so, the more they appear to thrive in terms of promotions and remuneration. I think that there should be serious prosecutions – but one only has to look at the outcome of the Connor Sparrowhawk case to realise that the authorities seem to be above the law and that injustice in this system is rife. Apologies for the length – there is just so much I could say but I hope that this condensed version makes sense!

  29. Jeff Calderbank 12 months ago

    My Story is slightly different, My Mother in Law went into a home in July 2015, that home was in a different local authority than her home address, and at that time we thought that she would qualify for Continuing Healthcare (CHC) funding, but on the first assessment she passed the first part of it and then went to the Decision Support Tool (DST) stage, and that was the end of that attempt. At that stage she did not have a social worker attached to her, which we later understood that she should have had.
    In January 2016 we started the process again (her condition had got considerably worse) and were advised that she was ‘non priority’ to have the Checklist completed (but how they could say that without her being visited I can’t understand). As time progressed and very many attempts she was eventually assessed in September 2016 for the Checklist, which she had the required number of ‘points’ to go to the next stage, but unfortunately the next stage never happened, through a complete lack of cooperation from the authority of CCG, and she passed away in November 2016.
    I contacted the CCG and was given many excuses, but nothing was done.
    I eventually took the case to NHS England CHC in my region, and initially they seemed to be on our side, but then advised me that they couldn’t pursue the case any further as our local CCG said that my Mother in Law had never been assessed – she had, I was there!!.
    I have asked for a retrospective review of the case from our local CCG, but that does not seem to be moving forward.
    I continue to attempt to put pressure on the CCG, but just get fobbed of with excuses.
    I have also made a complaint to the Parliamentary and Health Ombudsman – but that was only submitted recently, and to-date no correspondence has been received from them.
    The CCG just seem to think that eventually I will get fed up and give in – I won’t!!
    Just wonder if anyone else has had a similar experience?

  30. Steven Hearne 12 months ago

    I went to appeal and was rejected and was then told if I appealed further to NHS England it could take at least a year and there might be a `Review of the facts on paper first`before consideration of a hearing date in my area. Before this I was trying for seven months to get an updated assessment of my Mum`s failing health in the care home, without success, and now they say that aspect will be `Retrospectively looked at` based on care home notes as my Mum passed on!

  31. Barbara 12 months ago

    We are going through a similar process at the moment. We were given Continuing Healthcare (CHC) 18 months after our initial application and following an appeal process that took 5 months and we have now been funded for 2 years. After an annual review recently we have been told that funding is to be withdrawn because my husband `no longer qualifies`.The assessor told me during the assessment (the nurse from the nursing home had to leave the meeting for a phone call) that she didn`t think we would qualify, so she had decided very early to withdraw funding.
    My husband has a progressive, degenerative, terminal illness that means he has to be hoisted for transfers, fed with pureed food and thickened liquids (to avoid choking episodes), is turned in bed, has eye problems, poor cognition, poor communication, is doubly incontinent and has medication for diabetes, vitamin B12 deficiency, thick saliva, creams for skin problems etc, etc.
    I have sent a letter to the CHC team informing them formally of my intention to appeal again, but what a waste of time and energy. I have contacted all the relevant medical staff (Consultant, GP, specialist nurse, Speech & Language Therapy (SALT) team etc) for letters of support as `evidence`. They have all expressed support but I am certain their time could be better spent. It all takes such a long time to resolve and I really want to devote my time to my husband while I can, however I will not give up.

  32. Christine 12 months ago

    Best thing is to exhaust the local dispute process as quickly as possible and get to NHS England. Local CCG’s are a waste of money. I am an angry nurse disgusted with some so called professionals who should be struck off for being in breach of their code of practice.

    • Chris-G 12 months ago

      I agree, and with that in mind I always write the first appeal in close detail including supporting evidence as if I was going to present it to some one that will listen. The chair of the Independent Review Panel. What seems to be going on here is some kind of local resolution panel…. It is not the correct procedure…. It does however seem to lend ammunition to the local CCG when it answers the IRP chair prior to them agreeing to even hear the case. We have had such a thing happen recently. NHS England declared that one assessment would be heard but not one that followed. They blamed the IRP chair but refused to name the person. The matter remains unresolved after 18 months. It relates to appeals going back to 2013. I reckon that NHS England is no longer non partisan in this anymore. They are protecting CCGs and blaming panel chairs for not hearing cases.

  33. Jennie 12 months ago

    We have requested IRP. But it seems from above this is a waste of time. We are now looking into legal action as running out of time for this option and we will go alone as we seem to know more about Continuing Healthcare (CHC) than anyone we have met in the process or at least anyone willing to be honest through this process. I work for the NHS on a ward and please don’t be put off that the attitudes in CHC are anything similar on the wards, they are not. Such good honest work is being done by staff to get people home and safely discharged.

    • Paul 12 months ago

      Absolutely not – You keep on – once the IRP has sat you have completed the procedures and then it’s up to the Ombudsman to hear your complaint and apply the law – remember nothing up until that point is in any way ‘lawful’

    • Paul 12 months ago

      Jennie – I should have said that if you have had the Local Appeal Panel and have requested the IRP you are actually ‘through the system’ They can either give you IRP or decline – Either way you can complain to the Ombudsman at which point the LAW gets applied.

  34. Chris-G 12 months ago

    Paul is correct. One is entitled to an Independent hearing regarding most administrative decisions. This is writen within the actual CHC standing rules regulations (law) because it is both UK and EU law……. It is a human right.

  35. wb 12 months ago

    Continuing Healthcare (CHC) history: Concerns relative in hospital summer 2016. In August 2016 I requested CHC – the relative was living alone and disabled. The Mental Health social worker said he was not eligible. He was discharged Oct 2016. I had made my self familiar with the National Framework (NF) for CHC and asked to see a Decision Support Tool (DST) from the hospital. Blank faces all round. A Checklist was quickly sent off by Soc Serv to the CCG. Nothing happened and I then chase up the CCG who denied the existence of said Checklist. I then got the Soc Services to send of another Checklist. This was followed up very slowly and after 14 months Joint funding was awarded. I then asked Soc Services why hey had not followed up the original Checklist which the CCG denied the existence of and asked if they had any correspondence citing the original Checklist. This they provide which proved the failings of the CCG.
    We heard no more – the joint funding which was not enough for his care and which I made up – and the Dec 2016 a review we set up (4 years later than the NF specifies) and a rationale was produced (Dec 2016) which states 24 intensive care. To date (Oct 2017) the funding is not in place and I am funding the shortfall. The panel is now setting about employing a private contractor to assess the needs. I have asked the CCG if the the needs in the Rationale are wrong and should they not keep the patient fully informed of what they are doing and why? There is something very suspicious in this service (CHC) and unlike other NHS services in our opinion. I have tried to identify the panel and asked to be present but am getting nowhere. BE VERY,VERY CAREFUL

    • Paul 12 months ago

      Get the name and position of eveey member but particularly the chairperson that will be present – VERY important – Note pretty much all they tell you contravenes the law – these people are gatekeepers

  36. Glynis Evans 12 months ago

    That is disgraceful. We are just about to go to an IRP Appeal & have a feeling that it will be exactly the same. We don’t hold out any hope with IRP panel. From what you read they may as well not have that stage of the appeals process. Seems a waste of time & money. Should perhaps just go straight to NHS ENgland stage & then Ombudsman.

    • Paul 12 months ago

      Glynis – problem is you can’t just go to NHS England as you have to complete their ‘procedures’ where are you to attend the IRP ?

      • Chris-G 12 months ago

        Nor can you bypass any of it in the courts.

    • Chris-G 12 months ago

      If it is not a genuinely Independent Chair in charge then make your position known and perhaps leave. The fault will be theirs for misleading you. Misleading someone in a financial matter or causing them expense in the same vein if it done with dishonesty is fraud.

      • Paul 12 months ago

        100% it’s both fraud AND a breach of the HRA – right to a fair hearing – they are risking their jobs if they do this although whether they realise or not is a matter for conjecture……..

  37. Martin Terry-Evans 12 months ago

    Blowing the whistle on state-sponsored organised criminals can be hazardous.

    My experiences include.
    1. Being falsely accused by so-called “safeguarding adults team” after making a complaint about Continuing Healthcare (CHC) assessors.
    2. Threatening letter from NHS solicitor when publishing identities of those flouting the law.

    • Paul 12 months ago

      Honestly I wouldn’t worry about any threats at all – The NHS is operating almost entirely outside the Law with continuing care – they wouldn’t dare take it further

    • Chris-G 12 months ago

      Martin, I just get banned from communication with them. They really don’t like a skeleton legal argument that exposes wrongdoings, along with supporting evidence.

    • Chris-G 12 months ago

      One can visit magistrates and lay an information about identifiable crimes. They will want evidence and there is a charge to do so. However….. The DPP can take over and drop matters on very dubious grounds. So even this route simply risks losing money.

    • Tarquin 12 months ago

      Join the club. I recently discovered that a safeguard had been issued because I was persistent and difficult. What I can’t understand or comprehend is the attitude of these civil servants. How do they sleep at night? They appear to be totally indifferent to people’s suffering and the pressure they put on families. Even more concerning is the attitude of MPs who appear to be to scared to do anything about it. I recently wrote to my MP and asked him what was the point of passing legislation if said legislation is ignored. In addition to this I asked him why he thought it was acceptable for a CCG to redact anything in their files which is compromising on the grounds that it would affect the relationship between the care provider and the patient.

    • Chris-G 12 months ago

      http://www.neneccg.nhs.uk/resources/uploads/files/Management%20of%20Persistent%20_%20Vexatious%20complainants%20v6%20Published%20Feb%202014.pdf

      Above is an address detailing action over Persistent and Vexatious Complainants. There are dozens of such protocols available.

      • Chris-G 12 months ago

        To follow up…. They ban you if you raise the same issue once they have responded. That of course does not allow for their often fatuous response becoming the source of further questioning or eventually complaint….. Do that and they ban you; regardless of their own failures to actually respond properly.

        In a nutshell…. They ignore your first question. Then you write again and include three or four more questions. They answer one. Then they ban you for asking why they have not answered the others.

        Even better: I have had (after 5 months of being ignored), a Social Services Director (£142,000.00 a year salary), state that ‘your questions are too hard to answer and as such are causing me and my staff some considerable distress’. He went on to ask for bullet pointed correspondence in future and for some reason he sent it to the NHS CSU involved in decision making….. They the NHS, then promptly banned me from communicating with the NHS for complying with his council based request and writing 79 bullet points of the question that he had failed to answer. Every one was relevant. He didn’t ban me, the NHS did!

        • Paul 12 months ago

          It’s another stinger in the road to stop you getting to legality as of course they will always ‘lose’ at that point. The law has never changed.

        • Paul 12 months ago

          What people think is that when they are going through the assessment procedures they are dealing with a legal process when they are absolutely not – National Framework is just a guideline for the NHS to use as a shield nothing more

  38. Paul 12 months ago

    Has happened to me – This is in direct contravention of your human rights for a start. The CCGs are repeatedly going ‘rogue’ in attempt to put you off pursuing legally if needs be – It’s a massive scam Govt NHS England The CCGs are ALL complicit

    • Chris-G 12 months ago

      Paul, back in the PCT days before 2013, my dad was threatened with an NHS Security Team, if he communicated again, when it was me doing the admin and the questioning……. We still laugh at the imagined vision of bullet proof jacketed SAS style blokes swinging in through the windows from their helicopter. The idiot that sent the letter was quickly promoted to director level within another NHS area during our complaint about her conduct……. Which to this day remains unanswered.

      • Paul 12 months ago

        Chris sorry I missed this before – Hahaha they are living in their own little world and all of them are committing fraud on a daily basis without probably realising it…..

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