How do you know if a Continuing Healthcare assessment should be done?

How do you know if a Continuing Healthcare assessment should be done?

How do you know if a Continuing Healthcare assessment should be done?

What’s the trigger point for getting your relative assessed for NHS Continuing Healthcare?

This is a question many people ask, and there are various ways to answer it. So how do you know if a Continuing Healthcare assessment should be done?

The following are all broad indications that your relative should be assessed for NHS Continuing Healthcare:

  • your relative is in hospital and needs ongoing care after discharge; they must be assessed for NHS Continuing Healthcare before being discharged. This is made clear in the Care Act.
  • your relative has health needs and is at home and needs care
  • your relative has been receiving care for some time – and paying for it themselves – but no one has assessed them for NHS Continuing Healthcare.
  • your relative is going into a care home or receiving full time care at home
  • your relative was previously assessed but denied NHS Continuing Healthcare – but their needs have now increased

In these situations it’s vital that a proper decision is taken about who is legally responsible for paying care fees.

There is a very important distinction between local authority care and NHS care – the former is means tested, the latter isn’t. And that distinction does NOT depend on how much money your relative has.

It’s vital that families understand this before they pay a penny in care fees.

But how can you gauge whether your relative is likely to be eligible for NHS Continuing Healthcare – and whether it’s worth pursuing?

Keep these two points in mind:

1. You have nothing to lose by asking for an NHS Continuing Healthcare assessment. There are different stages to the assessment process. Don’t be put off by people within health and social care who may tell you it’s ‘not worth it’ or that your relative ‘won’t qualify’ or that a person has to be at ‘end of life’ or some such other nonsense. No one can say whether or not your relative should receive the funding until care needs have been properly measured against the NHS Continuing Healthcare eligibility criteria. Those care needs must also be viewed in the light of the legal limit beyond which a local authority cannot provide care – and beyond which any means test or financial assessment would be illegal.

2. You can look at the assessment criteria yourself (see below) and gauge how you think your relative will fare.

The fundamental point in all of this and the deciding factor in ALL NHS Continuing Healthcare assessments is whether a person’s care needs are primarily social care needs or primarily healthcare/nursing care needs. If the latter, the person should be fully funded via NHS Continuing Healthcare. This means no means testing, no financial assessment, no top up fees.

NHS Continuing Healthcare funding is assessed by and provided by the NHS, through local Clinical Commissioning Groups (CCGs).

NHS Continuing Healthcare eligibility does not depend on any specific diagnosis that your relative may – or may not – have. Nor does it depend on whether they are in a care home or in their own home.

How can you know in advance what the likely outcome of a Continuing Healthcare assessment will be?

You can look at the assessment forms/criteria yourself and ‘score’ your relative yourself, based on their care needs – to get an idea of how they would get on in an assessment.

  1. Take a look at the Checklist assessment form (or ‘tool’). (Click the link and you’ll find all the Continuing Healthcare forms/assessment documents, including the Checklist. There are 11 sections or ‘domains’ in the Checklist. Look at the example descriptions of needs in each one and score your relative A, B or C for each domain.
  2. Once you’ve done that, look at the scores required to get through the Checklist (see pages 7-8 of the Checklist form).
  3. If you believe your relative would ‘pass’ the Checklist, get the NHS Continuing Healthcare assessment process started as soon as possible.

Note: You can’t actually submit your own Checklist to the NHS; instead, it has to be done by a health or social care professional. However, by doing it yourself in advance – just for your own purposes – you’ll get an idea of what scores the assessor should write down and what the outcome should be. It means you can better argue your relative’s case.

The Checklist is stage 1 of the Continuing Healthcare assessment process; it does not determine whether or not your relative will receive the funding – it simply gets you through to stage 2, which is a full multidisciplinary team (MDT) assessment. Stage 2 uses a form called the Decision Support Tool. You’ll find the Decision Support Tool here – it includes the assessment criteria and scoring system (which is different to the Checklist).

You could go through the same process yourself for stage 2 of the assessment process – using the Decision Support Tool – and see how you think your relative would get on at that stage.

Supplying evidence for Continuing Healthcare assessments – what’s needed?

How keeping a diary helps in a care funding application and appeal

NHS Continuing Healthcare: How daily care notes can damage your case

How to stand your ground in NHS Continuing Healthcare assessments



  1. Nat 3 years ago

    Thank you so much for all your advice. It is so reassuring to know that there are so many people willing to offer support and advice on this highly emotive issue.
    As it stands, we went ahead with discharging Dad on Friday. If we had allowed him to stay in hospital he most certainly would have died there.
    However before he left hospital, we lodged a formal complaint regarding Dads discharge – stating that not only had they not followed their hospital discharge policy but they had not adhered to the Care Act 2014.
    The hospital have already responded and apologised saying that they will oversee Dad having the checklist and assessment in the community. They have already said he will qualify!
    I’ll keep you updated as to whether any of this actually happens!

  2. Annie-C 3 years ago

    I had exactly the same experience with my elderly mother. You have the right to refuse the discharge until a care plan has been devised and an ongoing care package has been put in place, whether that be to home or to rehab. I said “no” to my mother being discharged and she remained in hospital for 5 weeks until all proper procedures had been undertaken. I have Power of Attorney, so don’t know whether or not that gave me added “clout”, but it was a senior nurse on the ward who told me that I could refuse to allow discharge. I also found the Social Workers attached to the hospital were extremely helpful. Richard is right; your strongest card is staying put, even though that is not what you want. J|anet is also right: GP’s are really not up to speed on the terms of the Care Act.
    I wish you well and hope you achieve your aim of getting your father home soon with a proper care package in place.

  3. Janet 3 years ago

    As far as I understand, you can still have a Checklist assessment for Continuing Healthcare (CHC) in the community. Don’t rely on your GP knowing much about it though. Have a look at the CHC guidelines.

  4. Nat 3 years ago

    URGENT advice needed please! My Dad is being discharged from an Acute hospital tomorrow. He fractured his hip after a fall at home. He has multiple health issues that are going to require 24/7 nursing. The hospital have recommended he goes to a rehab hospital but due to his massive decline in his mental state due to mixed dementia and having been in hospital for nearly 3 weeks, we’ve decided he should come home. He is desperate to come home and we are desperate to see him come home. I have asked the hospital to conduct a CHC checklist before his discharge. I know that he will definitely qualify for the CHC assessment & most probably funding. However the hospital keep trying every excuse in the book not to do it! They’ve now said they can’t do it till Monday and it will take them a few weeks to do?! I have seen the checklist and I know it would probably take less than 40 minutes to do! What is there problem?! They know I am not going to let my extremely vulnerable Dad stay in that place more than one second than I have too so there is no way I will be waiting for them to do it. They are effectively emotionally blackmailing us! Any advice would be very welcome.

    • Richard 3 years ago

      Strongest card is staying put. Hospital discharge regs say CHC screen must be done prior to discharge

      Refuse the discharge adv hospital and care / nursing home that moving your dad without agreement may constitute an assault and unlawful deprivation of liberty. Once out of hospital any influence you have on the authorities is minimal. Email all relevant chairs of trust, etc.

      • Chris-G 3 years ago

        But so often Richard, they just send them home and ask the nursing home to let the representative know. Then when challenged, they argue that they use the ‘discharge to assess’ protocol once the patient is back in their nursing home. They blame delays or non compliance on the nursing home. The hospital of course, knows nothing of the circumstances financial or otherwise, just that their patient will be cared for in a home and that allows the hospital a clean discharge without involving the council social workers.

        • Richard 3 years ago

          We stopped them sending get Mil direct to nursing home by serving solicitors letter on NHS trust and local nursing get home and ambulance service advising any attempt to move her without agreement would constitute assault deprivation of liberty etc .

          • Chris-G 3 years ago

            That is possible but when a patient already lives in a nursing home, the NHS often just sends them home. They can do this without a care plan because the home is apparently supposed to know what to do even if needs have changed.

    • Angela Sherman 3 years ago

      Nat – your experience is not unusual sadly. Vacating beds as quickly as possible seems to be most hospitals’ top priority at the moment – regardless of their duties under the Care Act. If your dad is discharged before the Continuing Healthcare (CHC) assessment has been done AND a decision reached, don’t pay a penny in care fees until the CHC process is complete. You’ll find more information to help you in the “Relative in hospital” section here:

  5. Richard 3 years ago

    Interesting video about Pamela Coughlan and same site has a PDF ‘Pamsday’ of her care needs which are the definition of Continuing Healthcare (CHC) entitlement – not Decision Support Tools or Multidisciplinary Teams. If your care needs are equal to or more than Pamela’s then you are entitled to CHC.

    • Chris-G 3 years ago

      The website is quite old Richard and some claims are opinions. However the video is unchallengeable in my opinion but try to get anyone that matters,to view it. The Pam’s day document is similar to an ADASS document posted on this site. The ADASS version lends more weight in any argument because that is the adult care director’s organisation and not similar observations that could be argued by the authorities because of their origins. What I do at appeals is to type out pamsday and in italics, I insert what DSTs, medical records And the nursing home records about my loved ones. It lends me confidence that I am indeed correct to fight these spiteful and hateful people.

  6. Richard 3 years ago

    Just had this from our lovely CCG ;
    My reading is that XXX the person who does the assessment presents to panel has been given a predetermined outcome from the C ops and Finance Officer of the CCG. How can either an appeal or fresh Continuing Healthcare (CHC) process be heard impartially?

    I refer to your request made under the Freedom of Information Act 2000 and the subsequent questions which were asked in relation to your funding at the public session of the Primary Care Commissioning Committee on the 21st October 2016.

    It should be noted that as the response to this enquiry details your individual case, we will not place the response into the public domain as we would normally do under the FOI act. We felt it necessary to answer all of your questions as thoroughly as we could and to ensure that you received a single consistent response.

    You requested a copy of the CCG policy for Continuing Healthcare (CHC) Funding. Having considered your request I am now able to provide the answers below.

    Please provide a copy of the CCG policy for CHC funding:
    The CCG has no separate policy on this matter. Decisions are made in accordance with the national framework for NHS Continuing Healthcare and Funded Nursing Care.

    A) Please explain why a fresh CHC process cannot be undertaken while an appeal is in progress:
    The National Framework does not mandate a particular process to be followed in assessing eligibility while an appeal against an existing decision is in progress. However, Regulation 21(2) of the NHS Commissioning Board and Clinical Commissioning Groups (Responsibilities and Standing Rules) Regulations 2012 requires the CCG to:

    “take reasonable steps to ensure that an assessment of eligibility for NHS Continuing Healthcare is carried out in respect of a person for which that body has responsibility in all cases where it appears to that body that –
    (a) there may be a need for such care; or
    (b) an individual who is receiving NHS Continuing Healthcare may no longer be eligible for such care.”

    The CCG are satisfied they have complied with this regulation in your case.

    As confirmed in XXXXX email to you on 14 October 2016, your care needs have been formally reviewed up to the date of the CHC Panel decision on 19 July 2016, when you were deemed ineligible for CHC funding. The NHS Foundation Trust have kept the CCG updated with your care and condition, and the CCG remain of the view that your needs have not changed to the degree that would indicate a substantive change in eligibility, prompting the need for a further assessment at this point.

    It has, however, already been confirmed that the CCG will assess you again post discharge from Hospital.

    A review would only be triggered at 3 months if a person had already been deemed eligible for CHC or there was a significant deterioration in the person’s condition; neither of these situations apply to you.

    B) Please explain why a fast track CHC can only be considered if the patient is in the last 12 weeks of life:
    A Fast Track can be considered for an individual with a primary health need arising from a rapidly deteriorating condition which may be entering a terminal phase.

    Such a submission should be supported by a clinical prognosis. Whilst there is not a prescribed time period for a Fast Track, the patient should be in a rapidly deteriorating terminal phase. Twelve weeks is therefore reasonable. It is the opinion of the consultant and the clinical team responsible for your care that you do not have a primary health need arising from a rapidly deteriorating condition. A Fast Track is therefore not appropriate at this point in time.

    C) Please explain why a person who needs 24 hour nursing and is eligible for CHC funding must go into a nursing home against their wishes rather than have a nursing care provided in their own home:
    The National Framework requires the CCG to consider patient preferences in organising care but acknowledges that financial considerations and risks to patients can and should be taken into account. The CCG Board in May 2014 approved a policy that guides decision-making on domiciliary care packages by consideration of the comparable care home costs for individuals, in order to ensure that limited resources are distributed in an equitable way when commissioning continuing care packages. However, as you have not been considered eligible for CHC, the policy is not applicable in this case.

    Any queries or concerns, or if you are dissatisfied with the handling of your request please contact the Director of Communications & Public Insight.

    • Chris-G 3 years ago

      Richard. They wrote. ‘CCG remain of the view that your needs have not changed to the degree that would indicate a substantive change in eligibility, prompting the need for a further assessment at this point.’
      Question. Without a chc assessment how could they tell that a chc assessment was not required…….. They prejudged the outcome without even assessing.

  7. Annie-C 3 years ago

    I wrote to the CCG in August (copying the letter to the GP, Social Services, LA, etc., etc., as advised, and using your excellent template letter) requesting a Continuing Care Assessment for my 99-year-old Mum and asking why one had not already been carried out. I received no response whatsoever, apart from a reply from the CCG over a month later telling me they had no record of her, which is nonsense! The GP was sympathetic, but said he thought I didn’t stand a chance! Two weeks after sending my letter, Mum had a very bad fall at home and was hospitalised for 5 weeks, during which time her Vascular Dementia, general health and incontinence worsened considerably, she became unable to walk unaided even with a frame and I was informed by a doctor that her kidneys were “shot”. Despite this they were desperate to discharge her. Mum couldn’t return home, as I couldn’t guarantee her safety, and she has no money left with which to increase the level of care to 24/7 in her own home.

    I managed to find her a place in a lovely care home 15 minutes from me, but it costs nearly £1000 per week. Reluctantly, therefore, I have put her home on the market and the LA have agreed to pay 3/4 of the fees for the first 12 weeks under the Property Disregard Scheme. At least, once the house is sold, I know there will be enough money to pay for her to have good care until the end of her life, which is all I want.

    I have been caring for Mum since 2001 when my father died, and haven’t had a proper break for 8 years since she was diagnosed with dementia. I am a reasonably healthy and positive 72 year old, but the past few weeks, with Mum in hospital, finding a care home, trying to sell her property, as well as trying to look after my husband and my own home, have been unbelievably stressful. Receiving the letter from the CCG was the last straw. I have reluctantly thrown in the towel before I, too, become a candidate for NHS CHC!!

    I know I have let the side down, but I sincerely wish all of you good luck in pursuing your own claims.

  8. Janet Benson 3 years ago

    Hello Sheila,
    it sounds like the same old story. I’m no expert as I’m new to the game, but consult the DoH document, ‘National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care’ , which I’m sure you have along with Angela Sherman’s book. I’m sure you can ask for another checklist to be done if you don’t agree with their findings. We did. But not sure how you stand if you’re already receiving FNC. The experts will tell you. I find the frustrating thing thing with this is there’s no one neutral that you can ask, as they all have an agenda.
    We are at the Decision Support Tool stage but the recommendation went against us. We are planning to question their process for flaws before we get the confirmation as we believe there were a few. It sounds as if there were flaws in the way they treated your Mother.
    The best of luck.

  9. Sheila 3 years ago

    My mother has been recently (6 months ago) diagnosed with Lewy Body Dementia. Until May this year she lived on her own, did her own shopping, cooking etc. but had been diagnosed with Parkinson’s a year earlier.
    After a UTI, she was admitted to hospital with serious confusion, where she stayed for 11 weeks, during which time her mental and physical state rapidly declined.
    She was assessed for care needs (with no prior warning) at the hospital and put into a nursing home at short notice. I have a copy of that report because I specifically asked for it.
    Since admission to hospital, she has been wheelchair bound, doubly incontinent and catheterised.
    Cognitively, she does not really know where she is and is unable to remember the names of her grandchildren, for example. Her communication is now very limited, rarely, if ever, even saying ‘hello’, ‘goodbye’ or acknowledging family or friends who visit.
    Her original assessment awarded 4 ‘B’s and 7 ‘C’s, with a ‘C’ for communication! She has been in the home for 3 months and is self funding apart from Funded Nursing Care (FNC). We contacted the NHS CCG and requested that an assessment was done with a view to a subsequent full Continuing Healthcare (CHC) appraisal, and this was agreed to be done by the nurse who returned our call from the NHS regional authority.
    On the agreed date the nurse never showed up, and my mother’s nursing home had been given no advance warning (apart from by myself) of their visit. Luckily, another nurse, who happened to be assessing three other residents for FNC, was eventually given my mother to put on her schedule for that day, and an assessment was carried out.
    This assessment, unknown to me, then became the 3 month FNC appraisal. When, at the end of the meeting, this became apparent, I explained that we were seeking a route to a full CHC assessment, but the nurse repeated all the usual ‘No, your mother is not ill enough etc. etc.’
    The new assessment gave my mother the same 4 ‘B’s and 7 ‘C’s just as before, despite the written notes taken down on the template reflecting our opinions as to her inabilities, hallucinations and whimsical answering to ‘needs’ questions etc..
    A senior nursing home nurse was called in to the meeting with us to offer her opinions about my mother and counter-signed the report. Previously, another senior nurse from the home had told me that my mother should be a ‘B’ rating for communication on the template in her opinion, but she was not on-shift on that day.
    Although my mother was dressed and readied for the meeting by the nursing home staff (at zero notice) she was not involved in the meeting.

    How, and to whom, can I appeal against this survey, as apparently my mother does not meet even meet the criteria for the pre-CHC appraisal [the Checklist], and I have been told that I can not appeal against this?

    Any other advice about her eligibility for CHC would be gratefully appreciated!

  10. Janet Benson 3 years ago


    Could anyone clarify this
    We have an Multidisciplinary Team (MDT) meeting and Decision Support Tool next week but have been told previously by a nurse assessor that our mother’s needs are not above the provision of a residential care home. We are aware of section of the Framework which deals with health need v social needs in particular section 3.3a which states that a person is considered to have a Primary Health need ‘when the nursing or other health services they require when considered in totality….. are more than incidental or ancillary to the provision of accommodation’. Can anyone give examples of what this means in practice, i.e. what is meant by incidental and ancillary in this context.
    PS. She is already in a care home and her complex needs are increasingly being managed well most of the time, as staff get to know her and her needs.

    • Chris-G 3 years ago

      Janet, the key to this is that the NHS decides what nursing care needs exist. They work from a local handbook and not the National Framework and so the outcomes seem almost random. They will minimise care needs so that they can claim them to be only needs of daily living. However, I argue that presenting lunch to a resident is very different to having to feed it to them. Having minimised the needs the NHS canbthentry to make it seem as if the accommodation is actually unnecessary and so ancillary to the care needs………….. In short, the needs could be met outside of a care home by carers or family. This is of course nonsense most of the time, because many residents are only there on advice given to long suffering family, by Consultants and GPs.

    • Angela Sherman 3 years ago

      Janet – a person can receive Continuing Healthcare funding in a residential home; the setting (place) where the care is provided is irrelevant, i.e. it doesn’t have to be a nursing home: The ‘incidental or ancillary’ point comes from the Coughlan case. All Continuing Healthcare cases must take into account the ruling in this case:

  11. April Barrass 4 years ago

    Hi Chris G

    If a person is considered to have capacity by the Continuing Healthcare (CHC) nurse, they must firstly be made aware of the reason the DST is taking place, & they agree to have the attendees present, secondly the person should be permitted & given time to ask questions & discuss their needs/ concerns. I can honestly say I have never attended a DST & the person leading the health meeting has indicated they leave due to personal commitments.
    I consider this as inappropriate & if a CHH nurse or any other agency worker behaving towards an individual, in a manner that appeared to diminish or discount their right to voice their opinions or respond to comments would be unacceptable, the local authority representative has a role to play in the DST, not just to attend but to ensure the person & their significant others have the opportunity to express opinions, concerns etc. I am somewhat surprised the social worker chose not to advocate on behalf of the individual. Saddens me you & your family have experienced a negative situation.

    • Angela Sherman 4 years ago

      Sadly, we often hear of assessments where members of the multidisciplinary team (MDT) either arrive late, or keep popping out or leave before the end. It’s a shambles.

    • Chris-G 4 years ago

      Hi April, We have been going through this since 2008. IRP’s are almost always the result. So far, we have won at three of them. We are being denied an IRP in relation to what I write below. NHS England reckons that it is the IRP chair that is refusing, but will not name the person. Go to the Ombudsman they say. Suspicious? Hell yes.
      After Oct 2013 when a single NHS nurse assessor carried out an assessment as a MDT without any other parties present withdrew CHC funding, in April 2014: Elderly double leg amputee and brain injured father in law (Fil) first declined to be got out of bed to attend his own assessment due to pain and morphine induced confusion, (his leg required further surgery (June 2014) after failing to heal within past two years and he was struggling to concentrate (in his limited way), due to pain and infection.)
      He had limited cognition but was encouraged to make unsupported choices as opposed to making irrevocable decisions. (Sometimes his choices were discouraged or ignored because of confusion caused by infection.)
      Records show that the Council assessor was already at the home for some time.
      NHS Assessor arrived 15 minutes late. Records showed that she had not attended the home in the last month. When did she research the records? When did she actually do the assessment of needs prior to hearing, first hand, and then declining or agreeing with what was said at the MDT meeting?
      NHS assessor surprised that FiL was not already at the meeting in a large social room. She was told of his refusal by us and the Council assessor.
      NHS said….. ‘i’ll soon see about that.’ And she stormed out and alone, at his bed side allegedly ‘persuaded’ him to attend.
      Then the home’s nurse came in and told the MDT that FiL would be there in about 40 minutes.
      NHS said. ‘That’s no good, we need to get on’.
      We packed up at her insistence and moved to his single bed room (with a full hospital bed place). Five people plus FiL in his bed making six.
      Then we began the search around the 50 bed home for folding seats. (visitors never take them out of rooms and put them back in the corridors): Because there was only one (comfy armchair) in the room.
      During which time the Council rep’ stated that the NHS needed to get away by 4.00pm because of her children being home alone otherwise. It was now well past 2.30pm.
      No examination of stump wounds. Minimised comments regarding the needs associated with planned re-amputation surgery and the confusion caused by repeated infections in a brain injured patient.
      Lots of requests (angry demands really) by NHS to FiL to please stop interrupting (incoherent reminiscing). But not one CHC relevant question addressed to him throughout. Or recognition of the inappropriate venue and decision to involve the patient. Let alone recognise the Complexity and Intensity of his needs in relation to just getting him out of bed to comply with her unpredicted need for him to attend or be part of an assessment that he had already declined to attend. (Him having already refused over several days of us ‘reminding’ him).
      FiL was eating a late lunch. Having refused it and then questioned why he had not been given any. This was given him AFTER he had allegedly agreed to have the assessment in his room but just before we got there.
      He was surprised that we were visiting, (having already spent two hours with him that morning, he did not seem to remember that we had visited).
      The NHS three times suggested that he have his lunch reheated during the assessment. It remained unfinished at 3.45pm. (Health violation to reheat cooked chilled and once reheated food. A Nurse of any worth should know that).
      In the room there was no space to even use a clipboard let alone lay out notes and reminders and past DST’s. Only the NHS assessor (in the one comfy chair) was able to spread out a bit and make proper notes. I had my knees against the foot board of the bed and my back tight against the wardrobe.
      The home’s nurse had to be replaced due to shift change and handover prior to the last two domains and the eligibility criteria discussion….. So was it a proper MDT? Of course not. How could a nurse, not present for the MDT assessment discussion, be allowed to make domain scores as part of the MDT when she had no idea what had been said by us and discussed by the NHS and the Council?
      There is so much more to this than many would believe.
      Had we just started this process for two family members, we would have involved relevant lawyers and expert witnesses from the outset. So much law is broken in the guise of (even only sometimes), obeying the National Framework, when it is in fact the local procedure handbook that is being adhered to. The matter is so long and complicated now, that just to instruct a Barrister would cost a fortune. Had we involved one from the outset, each infraction and breach of law would have been immediately and obviously apparent to such a person after a swift phone call.
      All the best. Chris.

    • Chris-G 4 years ago

      Additionally April, The Council rep’ stated (even before the NHS arrived), ‘I have reviewed his notes and I cannot support your assertions that he should be funded’. That was contrary to all of the funding that he had received for five years, when his needs were in fact lower than at the time of this assessment and the one in Oct 2013 that had seen it removed unilaterally by just one NHS worker.
      What was stupid is that it was the nursing home’s RGN Nurse manager and the GP that had actually requested the CHC MDT because of my FiL’s intractable pain and the disruption to the doubtfully phrased, ‘needs of daily care’. What we did not know is that he was also suffering from liver cancer (which killed him in Jan 2016), because he was permitted to keep refusing further attendances at the hospital because of the intractable leg pain. The home kept intercepting his letters in this regard and so we remained unaware until we too late, challenged them over his bowel pain and dark yellow colour.
      Somewhere on one of my Facebook posts on Care To Be Different is a photo of his exploded and gangrenous leg stump, that shows around two inches of exposed bone protruding from the end where his thigh muscles have parted from the stump pad and pulled back down the thigh.
      Although this massive injury was not the case during the assessment, surgeons had been planning surgery because of the risk of rapid and catastrophic failure and then cancelling the operations since May 2013, some 11 months previously. However, the wounds were there and the chisel shaped bone (necrosis of the flat bone), was pushing through the stump and causing bleeding at several sites from the inside out. (full thickness injuries are not always ulcers and such the injuries were a severe (priority?) domain score.) He was scored no needs. (Even with penile blistering for over three months previously, that required him to simply wet his bed pads because he could not be catheterised for his incontinence either.)
      The MDT did not examine the leg stump wounds and assess the risk and the need for the proposed surgery. Nor could they confirm or deny what we stated, but they denied it nonetheless.
      It is obvious that in saying what she did whilst failing to view the injuries, and understanding the needs, that the Council rep’ was accepting levels of care that were beyond a social services department. This was the same rep’ that had demanded we supply his financial details some months previously by attending our home and badgering us. What is ironic (moronic) is that the council will not supply the same data to us under a subject access request because of data protection law……. Next time (for my mother) I will refuse the council, the data under the same law.
      In finishing. If you had an exposed bone and/or a life threatening infection……… Would you ask for a social worker or an ambulance? Then who was truly responsible for his care?
      As for the council being competent to provide health care? Why are they after 8 months, still paying the nursing home and passing the charges to us when they have long ago written expressing sadness at his death?

  12. Alan 4 years ago

    Thanks to help from a clinical lead in the care sector i have now managed to secure a full assessment for my mother. There are people prepared to help but my word are they difficult to find! And i do know there are many caring professional people out there.

    I’ve learnt quite a lot thanks to this web site among others but one thing does not make sense to me (actually there’s many more than one). Can someone explain to me how the checklist and DST are remotely legal? Many comments refer to care needs which require nursing and are therefore legally beyond the remit of a LA. The checklist requires e.g. five items at level B, but surely it would only take one item to be beyond the remit of the LA. What am i missing here!

    • Angela Sherman 4 years ago

      You’re not alone in asking that question, Alan! Other have questioned the legality of the National Framework and other assessment ‘tools’.

  13. April Barrass 4 years ago

    Prior to DST the CHC nurse will need to initially determine capacity (time specific) & secondly if your mum lacks capacity a Best Interest Decision is made, family should be actively involved in this process, along with care staff & local authority worker, ultimately the Decision Maker is the CHC nurse as they are leading the process.
    The Decision is to identify if it is in the Best Interest of the person to progress DST, at this point family & any others can & do consider the appropriateness of the person attending & if their attendance would cause undue distress. If a 3rd party has POA (health & welfare) they have the authority in decision-making relating to health & welfare, (CHC may ask for a copy).
    The outcome of capacity & best interest should always be recorded & reflected in DST document.
    You have the right to formally record your comments, disagreements & areas of concern.
    The DST is to determine eligibility , be aware the DST document will be submitted to ‘CCG Panel’ & their decision will be based on the quality & comprehensive information collated at the DST.
    I have experienced, when attending a DST the CHC nurse passing the DST document to the attendees expecting signatures, I explain until the document is complete & not in draft form & I have read through the information & reflects an accurate account of the details, comments expressed I am unwilling to sign, I formally request at this point consent from person/family to receive copy, in addition I ask the CHC nurse to record the request/s for completed copy of DST.
    Hope this helps.

    • Chris-G 4 years ago

      April, My father in law was considered able to make decisions and choices by a NHS multidisciplinary team assessor…… Then she spent the entire assessment at his bedside telling him to be quiet, stop talking, let me get a word in edge-ways etc. Father in Law hadn’t a clue what was going on but he was enjoying having four attractive ladies and us (making seven) people packed like sardines within his single bed room. I doubt he had seen so many people since he injured his brain and almost died after a fall. The fact that the assessor had warned us of her need to get her kids from school on time didn’t go down too well with us either. We timed the assessment at about an hour what with disruptions and her over riding need to leave early.

  14. Janet and Susan 4 years ago

    Thank you for your advice. We are working through the Official booklets, so we are on the right lines. Thanks for the advice about care home records and care plan. At least they should be current, which was one of the criticisms at a previous Checklist meeting (not that things had improved at all.)
    If our Mother doesn’t have capacity (she hasn’t) and my sister has financial PoA, do they have to interview Mother? She found this very stressful on previous occasions.

    • Angela Sherman 4 years ago

      More on capacity: Remember it’s about a specific decision (or consent) about a specific thing at a specific time. Assessors usually work from care notes and verbal testimony. It’s actually unusual for the person needing care to be in the assessment (bizarrely), and of course in many cases the person needing care wouldn’t understand what was happening and may find it distressing. Assessors usually spend a few minutes with the person beforehand – and (from accounts we receive from many families) often seem to ask just a few irrelevant questions and yet use that to form an (often false) impression of the person’s needs. It’s a good idea to be there at that time, so you can see and hear what the assessors are doing and asking.

  15. April Barrass 4 years ago

    I work for the local authority and attend many DST’s, and I would advise you to familiarise yourselves with Primary Health Care criteria, managed needs, (framework clearly explains). Download National framework for NHS continuing healthcare & Decision Support Tool. The DST provides you with a guideline of health & medical conditions the CHC nurse will be focusing on during the health assessment.
    Prior to attending any health meeting I read through all daily records completed by care staff & check the homes care plans, risk assessments, records relating to medication & general medical/health intervention; consent is given by individual and/or next of kin, this is dependent on capacity.
    Reading the information gives you an indication of the responses the CHC nurse will receive from the care worker attending the meeting, however once you have read records if you disagree with specific details or believe the information does not reflect an accurate picture of your relative you need to challenge & question the care home, in addition confirm who will be attending the DST & arrange to discuss in detail the areas of concerns you have with them, remember the local authority worker & care home representatives should be aware of your mum’s health/care needs & be familiar with the DST process, they are not just making up the numbers, they should play an active role.
    Anyone including the CHC nurse should request permission before reading a persons records.
    I am involved with many individuals placed in both nursing & residential care homes, who receive CHC funding, if the person is settled & happy in the home they have the right to remain with ‘through the door’ nursing/health input, alternatively if the placement appears unsuitable choices & alternatives can be discussed to reach a decision that is the most appropriate for the person.
    Lastly at the end of the DST I establish the recommendation the CHC will make, & ask they record my formal request for a copy of the DST (consent obtained prior to meeting).

    • Chris-G 4 years ago

      Hi April, The crazy thing is that when one tries to question the home’s representative, the CHC assessor will usually try to shut you down. Whenever I have questioned the person regarding the care home notes, they usually (except for once), knew very little about my mother and her care needs never having had to provide hands on care. So (as the assessor once said to me), ‘if it isn’t in the notes then it didn’t happen’, seems to be the mantra acceptable to both the NHS and the Social Services. This is regardless of observations made by my father on his daily 3-6 hour long visits to my mum’s nursing home. (e.g. My Mum; a lifelong black coffee drinker, and after six years (with almost monthly challenges and changes), they still don’t know that mum will not drink tea….. Yet her notes incorrectly insist that is what she drinks. Or how about us trying to present another patient’s notes at the multidisciplinary team meeting. (Obvious Data Protection Act nightmare). The reason? Because whenever violent behaviour was recorded, our diaries coincided with his records and nothing was recorded in my mum’s.

      • Chris-G 3 years ago

        To follow on in the vein of records. Mum was admitted to hospital some weeks ago. She had been barely eating and was dehydrated. She was sent home (discharge to assess/forget… Again), without her own clothes, two cardigans belonging to the lady in the next bed, two puzzle books and a Georgette Heyer novel. What we found out after she had suffered two weeks of raging diarrhoea after her return, was that the nursing home staff had been giving her movicol, a laxitive. Why would someone that had been on a drip and was barely eating, have been given a laxitive? Perhaps the wrong clothes and the books returned with a non communicative, non cognizant, bedbound Alzheimer’s patient were an additional warning that she might be taking someone else’s medication? It still took my father some days to get the home to stop. They still have not produced any evidence or hospital/GP record that shows an actual prescribed use of the medication. Nor do their own records or care plan show similar. So much for accurate record keeping. These people gave mum meds that were not even boxed with her name on them, simply because they were in her luggage………. Insane or what?

    • Angela Sherman 4 years ago

      Thanks for your comment, April. Just for clarity: The Decision Support Tool doesn’t list medical conditions, but instead describes various ‘pictures’ of needs in each domain. I mention this only in case families might assume there will be a list of illnesses in there.

  16. Janet and Susan 4 years ago

    Apologies for the length, but this is the short version. Any advice gratefully received.

    We are trying to obtain fully funded CHC for our 94-year-old Mother.
    Following a stroke in April she spent 5 weeks in hospital then 10 weeks in reablement. She presents with multiple health issues and is currently in a Care home.

    We challenged a negative checklist and are now preparing for a DST
    Prior to the DST meeting we would welcome clarification on a couple of points from anyone out there who has more experience than we have.

    Our starting point is that if Mother is only in a Care home because she has multiple health needs. If she were at home, where she wants to be, her needs would require 24-hour care and at times, she would need 2 people. Left alone, she would be back in hospital within a day

    The assessor conducting the Checklist asserted that CHC could only be applied in a nursing home and asked if mother would be prepared to move (the current Care home does not offer nursing).

    Our understanding is that that fully funded CHC can be applied in a residential care home or even at home. i.e. ‘Eligibility for NHS continuing healthcare places no limits on the settings in which the package of support can be offered or on the type of service delivery’.
    Our question is therefore, – are there any particular circumstances that need to be met for CHC funding to be applied in a care home setting? (Apart from fast-track end of life care.)

    The assessor repeatedly said, ‘your mother’s needs are not above the service provision of a residential care home’.
    We accept that, in the main, her needs are being met in the care home. (Her needs are all health related i.e. dementia and cognition, mobility, stroke, skin problems, occasional continence issues and taking necessary medication, but these can become managed needs by competent care assistants). If she did not have these needs she would be at home – where she wants to be.

    Could what she is saying relate to the following, although, we don’t totally understand what this means?

    114. (p36 of the Framework)
    ‘There will be some individuals who, although they are not entitled to NHS continuing healthcare (because ‘taken as a whole’ their needs are not beyond the powers of a local authority to meet), but nonetheless have some specific needs identified through the Decision Support Tool that are not of a nature that an LA can solely meet or are beyond the powers of an LA to solely meet. CCGs should work in partnership with their LA colleagues to agree their respective responsibilities in a joint package of care, including which party will take the lead commissioning role’.

    In addition, we would welcome clarification on the following statement, in particular, the phrase, incidental and ancillary as used in the following section of the Framework

    1.3 (p50 of the framework)
    ‘However, local authorities can and do commission care in care homes (with or without nursing) where needs to be met include elements of ‘general nursing’ provided by healthcare assistants or care assistants. A local authority can fund this ‘nursing care’ provided it is both incidental and ancillary to the individual’s accommodation and of a nature that a local authority can be expected to provide’.

    • Angela Sherman 4 years ago

      The assessor in quite wrong to say Continuing Healthcare (CHC) is only available in nursing homes. You’re correct in your assumption that the care setting is irrelevant. The CHC assessment process is exactly the same wherever the care is to be provided. The assessor also seems to think that the funding criteria hinge on whether a person’s needs can be met in a residential home. Again this is wrong. The key criterion is whether a person’s needs are within – or beyond – the local authority’s legal remit for care. Also, it doesn’t matter whether or not a person’s needs are being met; it’s the underlying needs that count, as if no care were in place. Your final point – if joint funding is suggested, be cautious; this is where the costs are split between the local authority and the NHS, but of course the local authority % is means tested. If a person has sufficient needs to merit NHS funding in a joint funding package, then the question is why are they not receiving full CHC funding.

  17. April Barrass 4 years ago

    Hi Annie

    Sorry to read you are forced to prepare for a battle on your mum’s behalf, it saddens me that relatives who are trying to deal with their loved ones health conditions & providing support are placed in a position of defence & challenging authorities, rather than spending precious time with their families. I have read numerous articles, government guidelines & health/social care future objectives, the common thread appears to be the need to demonstrate & focus on PERSON CENTRED practice & ensuring carers are fully involved with the assessment process & offered appropriate support….I have yet to experience these ideals however, I am forever hopeful.
    I intend to continue my crusade & push for fairness rather than cost implications.
    I wish you a stress free & successful CHC journey.

    • Annie-C 4 years ago

      Hi April

      It certainly is hard trying to care for someone you love and not being able to concentrate fully on that because of all the red tape and obstacles which take up so much valuable time, but I will continue to press for CHC and do wish you well with your crusade.

      Like you, I can see very little evidence of anything being PATIENT CENTRED, despite all the rhetoric from politicians, NHS executives, et al! I want to believe that one day things will change for the better, but can’t see that happening any time soon.

  18. April Barrass 4 years ago

    I am a social work assistant working in a busy community team, I feel the need to respond to various comments made in relation to social care workers & the involvement of my own personal & professional experiences when liaising with Continuing Healthcare(CHC)/CCG teams.
    For the past 3 – 4 years I have battled, challenged and exhausted most of my free personal time off reading, gaining knowledge and utilising the CHC framework and regulationsin in an effort to initially, advocate and protect vulnerable adults and support their relatives. I am not alone in this crusade.
    I consider myself to be an assertive and confident person, however without support from senior Local Authority (LA) managers, I find myself in a constant ping pong game. Yes, this is frustrating as I feel strongly about upholding the principles and duties of my role and as TRANSPARENCY appears to be the new buzz word, I pride myself of ensuring clear and accurate information is provided, although when dealing with the CHC process, health practitioners, hospital nursing staff and health specialists I am forced to accept rude, unprofessional behaviour and comments, (this includes informal and formal complaints), following polite requests made for completion of Checklists, outcomes/scores, medical information and suggesting options in terms of rehab potential, OT/physic involvement and ensuring Decision Support Tools (DSTs) take place to minimise risk and ensure safe discharges are planned appropriately.
    In a majority of cases, even though DST’s are generally deferred, this results in further issues when challenging funding responsibilities and refusing to collate financial details or activating assessments on the individual’s finances.
    I am exhausted and believe it should not be this difficult performing my role; consequently I am losing the battle and the person who is most affected is the individual I am trying to support.

    • Annie-C 4 years ago

      Hi April

      Despite my general ranting, I do completely sympathise with your predicament. I used to work in the NHS and in my experience it is the principled, caring people who try to do their very best for their clients/patients – whether social workers or clinicians – who seem to end up being ground down by the general inefficiency and unprofessionalism of those whose only purpose in life seems to be thwarting claims, shuffling papers around, giving themselves grand titles and keeping their heads down below the parapet whilst commanding very lucrative salaries! Cynical? You bet! I have seen the NHS haemorrhaging wonderful nurses, doctors and social workers because of the utter frustration they feel. I may be battling with the CHC/CCG teams on my mum’s behalf, but have found the social workers with whom I have had contact to be very supportive and sympathetic , as have some individuals at the LA Finance Department. Unfortunately, that support and sympathy doesn’t appear to extend any further up the food chain and I, too, am feeling exhausted by the whole process.

  19. Alison C. 4 years ago

    I have an issue with the CCG in that they have a very keen interest in my Fathers home care workers notes which are not by any means accurate, in fact, comments like “fine on arrival” are regularly repeated/copied. One would not think that my Father had a combination of advance vascular and Lewy body dementia. Yet these are the notes that have been previously used to refuse his CHC funding in preference to those of his doctors. We are paying privately for the current home care and I wondered if the CCG are entitled to these notes or not? The CCG sneakily rang the Head Office of the home care company and said I had given permission for them to view the notes which I had not!

    Has anyone else had similar issues with CCG Assessors?

    • Annie-C 4 years ago

      Hi Alison
      I was very interested to read your comments regarding the CCG going behind your back and telling your Home Care Agency that you had given permission for them to look at the care workers’ notes. I have just checked with my own HCA and they told me that this happens quite often, but that they always notify the client/client’s representative when they are approached in this way and don’t share any information unless given permission to do so, which would make me think that the CCG doesn’t have an automatic right to peruse them. My home carers’ notes, like yours, are pretty sketchy and make very little reference to the vascular dementia and its associated problems. They probably just put down “fine on arrival”, “fine on leaving” because it saves them having to write copious notes regarding incontinence, confusion, agitation, etc. If, on the other hand, the CCG is entitled to look at these notes, then all home carers should be made aware that they have to be really accurate and explicit in their observations as it is only too easy for these notes to be used to refute any claim for NHS Continuing Care.
      I, too, would be interested to know whether or not the CCG are entitled to see these notes or not.

    • Angela Sherman 4 years ago

      Alison – The problem with the home care worker’s notes is very common, unfortunately – and hugely frustrating when they’re being used as evidence in funding assessments. It sounds extremely underhand – to say the least! – for the CCG to claim you’d given them permission to see the notes, and the care company should have checked with you, rather than just taking the CCG’s word for it. If you can get a repeat (or further) assessment, you could ask the care worker to be present, so he/she can explain in greater detail what the care requirements actually are. Alternatively, you could see if the care worker/provider would be prepared to put something in writing to say that they were not aware the notes needed to be much more detailed. That’s a bit of a cop out on the part of the care company, because the notes should be detailed in the first place, but it may be worth considering.

  20. Alan 4 years ago

    Hi Annie. What i didn’t mention in my original post was that this checklist was a resubmission. The original one scored my mother with just 3 B’s due to an error made when the form was completed and also due to the care home supplying incorrect information regarding recent falls. The faceless clinician accepted the changes to those items but has now downgraded items which they originally accepted as level B. I can only assume they did this to ensure less than 5 B’s appear on the checklist and furthermore that they are incentivised to do this. Clearly corrupt. I am now going to employ a solicitor on my mothers behalf. I can’t really lose doing this as the cost will probably be less than one months care fees and if i lose then the local authority will have to start paying for my mothers care one month sooner. Hopefully you will hear something positive soon but……….

    • Annie-C 4 years ago

      Hi Alan
      I do hope your solicitor will achieve the result you deserve for your mother. It is beyond scandalous that the NHS treats vulnerable people in this cavalier fashion. I wish you well with your continuing battle.

  21. Alan 4 years ago

    An initial checklist was completed and submitted for my mother. Six items were scored at level B meaning a full assessment should be performed. However a faceless clinician reviewed the form and without contacting anyone concerned with my mother’s care or even the qualified referrer. They downgraded the scores on three items ensuring my mather does not qualify for a full assessment. Quite simply the system is corrupt.

    • Annie-C 4 years ago

      I’m sorry to hear of your experience Alan, but sadly it does seem to be the norm rather than the exception. As you rightly say, the system is corrupt and that is patently obvious to anyone who has to go through this process. I suspect the same will probably apply to me, particularly as I have had no response whatsoever from NHS Continuing Care Team following GP’s referral in July and my own request more recently. They are probably hoping that Mum – and possibly I – will be dead before they get around to responding!
      On a positive note, I have today received a telephone call from the LA Finance Dept informing me that, following the letter I sent them disputing the enormous rise in Mum’s contribution towards her Direct Payments, they have decided to offset the outgoings I detailed and not impose the rise. A small victory, but a huge worry off my mind.
      I don’t think the results will be as positive from the NHS somehow . . .

    • Angela Sherman 4 years ago

      That’s appalling, Alan, and I think many families would agree with the conclusions you have reached. You could complain strongly to the Head of Adult Care at the local authority, as the local authority may now be in an illegal position by effectively having accepted responsibility for care that is beyond their legal remit. This may also help:

  22. Annie-C 4 years ago

    Thanks once again for taking the trouble to follow this up, Chris.

    I went to see our GP this morning and honestly (naively?) thought he would be supportive. However, he was very defensive when I said I wanted Mum assessed for NHS Continuing Care and insisted that her primary needs were social ones, although he told me she should be in a care home now with 24/7 supervision. He said that any health problems she has are solely caused by old age, which is nonsense because she was still running her own home, looking after herself, cooking, going out and living a normal life until she had what I now believe to have been her first TIA in 2009 when she was 92. She was in her 95th year when her vascular dementia necessitated my bringing in outside care to help me. He said I had no alternative but to sell her house to fund her care because “there is no-one in a care home in this country who is funded by the NHS”! I used all the arguments detailed in Angela’s book to refute that claim, but he was adamant that Mum would not receive funding. He did, though, inform me that he had referred her for a MDT Assessment back in July. I knew nothing about this and I have had no contact from anyone trying to arrange such a meeting, which he said he would chase up. I wonder why he decided to make this referral in July, considering she has been self-funding her care since 2012 and he hasn’t seen her since February of this year. Unfortunately, I embarrassed myself by getting quite emotional whilst talking to him – more in anger and frustration than anything else.

    I have told him that I intend to pursue this and to attend any MDT meeting that is arranged and I am going to ask my Care Agency Manager if she or one of Mum’s carers can attend as well. I just hope I have the courage to keep fighting, because I must admit I feel like throwing in the towel and hiding under the duvet at the moment.

    • Angela Sherman 4 years ago

      Annie – Your GP is clearly ignorant of the funding criteria and the fact that thousands of people in are homes receive full CHC! Unfortunately many GPs know very little about Continuing Healthcare and yours may not have actually even read the eligibility criteria or the National Framework guidelines. Also, no one can say whether a person will or won’t be eligible unless an assessment takes place. If your GP did actually refer your mum for an assessment, you should have been informed and involved. You don’t need to go via the GP – go directly to the CCG or via a social worker. A social worker has a duty under the Care Act to refer a person for CHC assessment where there’s any indication they might potentially be eligible. I can understand your anger and frustration. Hang in there.

      • Annie-C 4 years ago

        Many thanks Angela. I have sent a letter directly to the Continuing Care Team, using the template you provided in your enormously helpful book, with copies to Chief Exec of the CCG, Director of Adult Services for the County Council, Social Services in both counties and my GP, so await their responses with interest!

        It may well be that Mum won’t qualify for NHS Continuing Care and that I will lose the war, but I fully intend to make sure they all know they have been in a battle! I owe that at least to my Mum and Dad for all the years they worked hard and saved for their old age.

    • Chris-G 4 years ago

      It is the type, severity and amount of needs that form the logic of a Primary Health Need. Just because someone is meeting them does not mean that they are not needs that together might well be health needs.

  23. Annie-C 4 years ago

    Sorry I’m afraid this is a bit of a rant, but I am at my wit’s end to know what to do next and have only just discovered I would appreciate any advice that anyone can give me.

    My 99 year old mother has advanced Vascular Dementia, postural hypotension, angina, poor kidney function and arthritis. She was widowed in 2001 and managed quite well with me as sole carer for a few years after dementia was diagnosed in 2009. My husband and I retired in 2004 and when I found it too much trying to balance my life and look after Mum I employed a private care agency in 2012 so that she could remain in her own home and free up a bit of spare time for myself. I have had to gradually increase the hours of care to 93 visits per week because of numerous UTIs and falls and her complete inability to care for herself because of the dementia. Without our care she wouldn’t remember to eat or drink, take medication, use the loo, get dressed or do anything for herself. I was told at the time of her first Care Assessment (2013) that she would not qualify for NHS Continuing Care because her needs did not meet the criteria and in my ignorance I accepted this.
    The Local Authority granted Direct Payments to spend on her care, which I have been receiving for the past couple of years (I have LPA) and these cover approx 50% of the care agency costs. The balance is made up of a Client’s Contribution from my Mum of £38 per month and a top up of £1000 per month, both of which are paid from her current account and are just about covered by her State Pension, Higher Rate Attendance Allowance and Pension Credit. I have now been informed that the LA will be reducing her direct payment by £270 per month, effective immediately, and that she will have to pay this herself. On disputing this, I was told it is because since her last assessment she now gets Pension Credit and is exempt from paying Council Tax because of her significant cognitive impairment, “so therefore she is much better off now than when you first completed her means-tested application for direct payments”. The fact that the cost of her outgoings has gone up significantly since then and therefore negates any benefits received seems to have passed them by completely. She owns her house and this is her only asset. All of her savings have been spent on her care over the past 7 years. If she has to find an extra £270 per month, this will leave her with only what remains in her current account – a few hundred pounds at best – to cover food, heating and everything else. At the moment I am paying for everything over and above this, including £100 per month for incontinence pants alone, plus chiropody, gardening, home insurance, shopping, etc. and I can no longer afford it either, as I have been retired for 11 years and my savings are being rapidly depleted. Were she paying rent or had a mortgage, that would be offset against the £270. The powers that be seem to be of the opinion that home owners have no outgoings. To date she has paid over £60,000 in care agency fees alone.
    Worrying about how I am going to continue looking after Mum is affecting my health now and I am so lucky to have a kind and understand husband, but it is putting an enormous strain on us both personally and financially. The GP said 2 years ago that Mum required 24/7 care, but I can’t afford any more than the 124 hours from the agency that she is currently receiving in addition to my going in every day. The only way to fund her in a care home would be to sell her house, which I would be more than prepared to do except that I honestly believe her needs are primarily health and not social. I feel as though she has already been treated abominably, considering she worked from the age of 14 until she was 70, paying her Tax and NI, and has never asked for anything in her life, until I applied for Attendance Allowance when she was already in her Nineties.
    I have asked for a revised Care Assessment and requested an NHS Continuing Care Assessment as well, but was told this week that they don’t know when she might get the Care Assessment because they are busy and have again been informed that her needs are not severe enough to meet the criteria for NHS Continuing Care. I am so tired of filling in forms, battling with faceless officials and having to fight for everything to which I feel she should now be entitled in what realistically are the last years of her life.
    I live in dread of being taken ill myself, because without me fighting her corner, Mum would be just another statistic – left on her own she would collapse through dehydration, malnutrition or a horrendous fall – and what’s the betting that the LA and the NHS would then be rushing to the media to blame one another for their failure to care for yet another vulnerable old person!

    Should I continue to press for an NHS Continuing Care Assessment, which she has never had, or should I just throw in the towel, put her home on the market and find her a lovely Care Home. I must admit I feel as though I am going to do the latter because I’ve lost the will to fight them any more.

    Thank you – and sorry this is such a rant.

    • Janet Benson 4 years ago

      Hello Annie.
      You have my sympathy. I would begin to look for a nice care home because you may need to do this for your own sake. It takes time to find the right one for your mum. Read all the advice that is going, eg this web site and Age UK. Go and visit without an appointment. Ask lot of questions until you find what you want. In the meantime, insist on the CHC Checklist being done. If your Mum scores high enough, then you can trigger the DST for Continuing Healthcare. A lot of hurdles to jump but you need to have all the evidence ready for all the 11 domains. It sounds as if your Mum has plenty of that. It is so wearing though. Our family are going through something similar and are not there yet. Good luck

      • Annie-C 4 years ago

        Thank you so much, Janet, for taking the trouble to reply when you clearly have as much on your plate as I do. I find it so unbelievably sad that we live in a country that can be rightly proud of its young athletes and their work ethic, but treats so shabbily the generation who exhibited the same work ethic and gave us the NHS and 70 years of peace.

        Your kind advice confirms what I think I had already decided upon – namely, that I will get Mum’s name down for a good local care home. I have already been to a number of them when visiting friends of Mum and have identified one which really impressed me, so will be contacting them. Even though she has no short-term memory whatsoever, she has retained her sweet nature and sense of humour and she also loves people, so perhaps a good care home will be just what she needs to happily live out the rest of her life and it will enable my husband and I to have our first holiday in 6 years. I will continue to do battle with the LA and the NHS if I have the energy!
        Good luck to you and your family with your attempts to find a fair resolution to your own ongoing problems.

    • Chris-G 4 years ago

      This is horrendous. You will likely need to seek a Nursing Home opposed to a Care Home.
      You should not be paying for anything from your income or savings.
      Please make sure that your mum is getting (circa £25.00 a week), allowance from her income. She is entitled to that at least. It should not come from her savings.
      As you say, you’re sick of filling in forms etc. Would seeking out the services of a competent and relevant lawyer assist matters. After all, your mum (or you with a financial LPA) is allowed to spend her savings and income to protect her money by paying for a lawyer.
      I wish you luck.

      • Annie-C 4 years ago

        Hello Chris-G

        Thank you for your helpful advice and for your very useful previous postings which I have avidly studied!

        Unfortunately, since Mum was diagnosed with vascular dementia in 2012, we have been paying approx £2300 per month to the care agency in addition to all the costs of running her home, food, etc. and the money that she and Dad saved during their working lives has now all gone. He died in 2001 and her only income now is from the LA Direct Payments, her State Pension, Pension Credit and Attendance Allowance, most of which goes straight out again to pay for her care. She does get around £24 per week allowance, but this doesn’t even cover the cost of having to employ someone to look after garden for 2 hours a week. My husband and I used to try and keep the garden tidy, but we are now too old to manage hers as well as our own. She has no money with which to employ a lawyer and i couldn’t afford it myself. The irony is that in 2012 Mum’s health had deteriorated so badly because she had been neglecting herself (but hiding it very well) that I brought in the care agency to help me ensure that her “last months” were as comfortable as possible while keeping her in her own home. Between us, we have managed to keep her safe and alive for a further 4 years, but it has cost her all her savings.

        The care home that I would like her to go into specialises in dementia and covers nursing as well. However, it costs £1000 per week, so I have no alternative but to put her own home on the market to fund it. The proceeds from the sale of her house won’t last for more than 4 years, by which time she will be 103 years old and, if still alive, she probably wouldn’t be too aware if I had to make a change to her accommodation when the funds run out.

        Onward and upward . . .

        • Chris-G 3 years ago

          Annie, I had another thought about this. If a lawyer would help then how about legal aid. If your mum is destitute then perhaps the citizens advice could point you in the right direction and it might save you further stress.

          • Alan 3 years ago

            My personal view is that if you have a financial LPA in place and the care costs for your loved one are exorbitant then what have you got to lose but employ a solicitor? If you win then you lose a month or so’s care costs but your loved one can benefit therearfer, if you lose then the NHS/LA will end up with less but you did your legal duty and tried to get a better deal. My personal situation is now that the NHS have finally stopped manipulating scores and admitted that my mother qualifies for a full assessment but now can’t come up with the resource to do it. I stand by my earlier comment that the system is corrupt operated by government poodles.

          • Chris-G 3 years ago

            Alan, I have been saying the same thing for almost a decade. If you can’t handle it or don’t accept the outcomes then use the money to protect the money. This would also be valid if a next of kin was a joint account holder (and could, from pre-illness knowledge of the patient confirm the patient’s desires) and not just a holder of a LPA. (Or so my solicitor has written). Once the cash is spent in a legitimate cause, the L.A cannot really complain especially as so many L.A staff simply go along with what the NHS wanted in the first instance.

            Just as a relevant aside, if there is such a thing; I understand that a knowledgeable representative can instruct a Barrister directly now, without the expensive need to instruct a solicitor first. So ….. find a Barrister with NHS CHC experience and you will also get a legal opinion, arguable in a court that solicitors would likely have to seek from a Barrister at your expense anyway.

    • Angela Sherman 4 years ago

      Annie – the only way to know if your mother would be eligible for NHS Continuing Healthcare is for the assessment process to take place. No one can tell you she won’t be eligible without properly consideration of her care needs in relation to the eligibility criteria. It’s vital to get this process started as soon as possible:

      • Annie-C 4 years ago

        Thank you Angela. I asked for an NHS Continuing Care Assessment last week, but have heard nothing back so far. If I have still not heard after the bank holiday weekend, I will chase it up again.
        In the meantime, I have made an appointment with Mum’s GP (who is also my doctor) for Friday morning and am going to ask that he puts something in writing regarding her medical needs. He has been telling me Mum needs 24/7 care for more than 12 months, especially because of the risk of falls and frequent UTIs, and has encouraged me to find her a care home placement. I find it odd that the GP hasn’t himself instigated a CCA, but must say I find most healthcare professionals seem to be even more in the dark than i am regarding procedures.

        • Angela Sherman 4 years ago

          This may also help, depending on your mum’s current situation:

          • Annie-C 4 years ago

            Thank you. This was indeed a very helpful link – oh how I wish I had discovered caretobedifferent years ago!

            I don’t quite know quite where Mum fits in with regard to Fast Track. She is not terminally ill, nor is her health deteriorating at such a rate as to cause immediate concern – she is, however, 99 years old so I suppose that in itself suggests a degree of urgency.

            I have used the template letter to type a letter to the CCG regarding an NHS Continuing Healthcare assessment and will take a copy of that with me to the GP tomorrow. Unfortunately, Mum lives in a village which is on the county boundary and so the GP and District Nurses come from one county and her Local Authority/Social Services from another. The Care Home I have in mind is in the county covered by the latter and she would consequently have a new GP. If she should be granted NHS Continuing Healthcare by one Authority does that mean I would have to go through all this procedure again were she to be moved to a care home which comes under a different LA?



          • Chris_G 4 years ago

            Annie, from what you have written, it really does look like healthcare is required. That should be provided freely by the NHS, but because of these nasty rules, only after a continuing Health Care Assessment. If the current carers are concerned, could you get them involved in carrying out a checklist or asking for the assessment? I make that point because our CCG constantly moans on about nursing home staff carrying out checklists and then asking for assessments, whilst trying to ignore our requests for the same thing.

        • Angela Sherman 4 years ago

          Annie – if you receive Continuing Healthcare (CHC) then it’s the CCG boundaries that matter, not the local authority. If a person receives CHC from one CCG and then moves area, they can usually take the funding with them (funded by the first CCG). Then at the next review, if the person is still eligible, the new CCG may then take over the funding.

  24. Gilli Stacey 4 years ago

    Hi all!
    My mum has been receiving CHC for about a year but has been advised that it will shortly be removed. She has two bank accounts – one containing the proceeds of the house she had to sell when a charge was put on it when she was funding her own care, the other is for her pension. She has resigned herself to the fact that the first account will be used to pay for future care but wants to spend the contents of the other one (around £5,000) before ‘they get their grubby mitts on it!) As her next assessment is less than a fortnight away, is she allowed to do this or will it be perceived as deprivation of assets? Thank you.

    • Angela Sherman 4 years ago

      Gill – it could be perceived as a deprivation of assets, depending on what she spends it on. It would be a good idea to take independent financial advice before she does anything with that money. Make sure any financial adviser you speak to is a) a specialist in and qualified to advise on care fees and b) understands Continuing Healthcare. Be sure to appeal the decision to remove the CHC funding, if you feel it’s incorrect.

  25. Simon Withey 4 years ago

    Can anyone advise me how I go about appealing a CHC decision? I’m disgusted by the treatment I’ve received from Social Services and really don’t know which way to turn. Should I involve a solicitor? Thanks

  26. Chris-G 4 years ago

    Look out. Chris is having a bit of a long rant.

    Regarding so called social care need within the National Framework.
    Section 49 of the Health and Social Care Act 2001 prohibits LAs from providing, or
    arranging for the provision of, nursing care by a registered nurse in connection with the
    provision by them of community care services. ‘Nursing care by a registered nurse’ is
    defined as ‘services provided by a registered nurse and involving either the provision of
    care or the planning, supervision or delegation of the provision of care other than any
    services which, having regard to their nature and the circumstances in which they are
    provided, do not need to be provided by a registered nurse’.”

    I would be intrigued to discover if the paltry Funded Nursing Care Component, (FNCC), paid in place of CHC funding actually covers the 24/7 per person cost of nursing care within nursing homes. If not then the needs of the patient are in fact more complex, intense or unpredictable than stated at MDT or the nurses would be able to do the work including the full administration tasks, delegating care tasks to carers, laying out medication and recording it, etc. etc. for every patient, within cost and time. Who knows, they might even have time to look in on the patient every day too.
    To explain my logic; payments for accommodation that is seen as ancillary to the need for nursing by a CHC assessor, should not be being used to subsidize the allegedly minimal nursing care needs of the patient or the accommodation cannot be ancillary to the need for nursing care.

    So how much nursing care does the FNCC actually pay for? Including holidays, sickness, pensions, employer’s National Insurance, salary and locum nurses, I doubt that it is eight hours out of a 168 hour week per patient that receives FNCC.
    I also know that at one time there were hardly any residents in a 50 bed Nursing Home in receipt of FNCC whilst there were at least four nurses on staff, five if you include the R.N manager.
    The current £150+ a week paid to three or four patients would not likely have paid the employment costs of five nurses now would it? I can feel a Freedom of Information request coming on.

    National Framework. Page 50 & 51.
    “2.3 Social care needs are directly related to the type of welfare services that LAs have a
    duty or power to provide. These include, but are not limited to: social work services;
    advice; support; practical assistance in the home; assistance with equipment and home
    adaptations; visiting and sitting services; provision of meals; facilities for occupational,
    social, cultural and recreational activities outside the home; assistance to take
    advantage of educational facilities; and assistance in finding accommodation (e.g. a care home), etc.
    CCGs should be mindful that where a person is eligible for NHS continuing healthcare the NHS is responsible for meeting their assessed health and social care needs.”

    The services provided by social services listed above are available to all. People without illness are just as entitled to them.
    Apart from gaining a place in a home, and their meals, both of my relatives did not require or gain any other of the described services described as being social care needs because of misfortune or due to some council initiative to help the downtrodden or dispossessed and generally healthy population, my relatives required care solely because they were ill.

    The question that should be answered is; if the care required by a sick person is not co-incidental with any of a councils abilities to provide services for social care mentioned above then is it really the council’s responsibility to provide services that are not listed as their responsibility within the National framework?
    Also. Should a sick person be self funding to pay for those unused services?

    It is stated that the list above is not exhaustive…….. It should however, be relevant to the matter in hand and as such, anything missed out of the list above that is subsequently deemed by the NHS to be a social service, should be vigorously challenged.

    I really don’t think that the NHS could come up with any more services that could be the councils’ responsibility and record them in the section above. As such, if they cannot corrupt to their advantage, a so called social need, on paper within the Framework then why are they getting away with it at MDT and decision making panels?

    To explain that logic. One of the social services roles listed above can be “provision of meals”. The social services do not appear to have a duty to be responsible for actually feeding a person. Or don’t you think that the NHS would have taken advantage of that and listed that as a social service within the National Framework?
    This list is a corruption of a social service’s duties so that the NHS can create the so called social care need that is not actually a requirement of the law that engendered the National Framework.
    The MDT are only supposed to be identifying a Primary Health Need. To allow them to assess to discover a so called social care need is a travesty. The assessment process is not designed to discover a social care need. Especially as the NHS cannot even fully list and define such a need within the Framework.
    I dare you to try at MDT, to approach the process from the other end. State what needs can be provided for by a council and you will have the NHS MDT member tell you that they are not there to assess the council’s role and responsibilities. (Yes, I did do it). Later of course they will usually tell you that the care needs are not the NHS’s but are the council’s because the needs are social care needs.

    Have a go. Take those listed social service provisions apart and try to work out how they actually apply to your loved one and you might be surprised that many don’t apply at all. That being the case, how can your loved one only have a so called social care need?

  27. Janet Benson 4 years ago

    Our mother had the checklist at the end of a 5 week hospital stay on a stroke ward (completed by senior nurse and family members) and this triggered the DST. She was discharged to a reablement unit in a care home with continuing health care for 6 weeks. This included daily physio and nursing care provided by the in-house nursing staff. After 6 weeks, we were told we had to start again with another checklist. This was done and in the nurse’s opinion, Mother didn’t score highly enough to trigger the DST. We disagreed on 3 of the domains, but were told firmly that she din’t require nursing care, just social care. She has dementia, cannot walk more than a few steps with a frame and two people supporting her, has skin issues and is dependent on medication for multiple health issues. She has been judged not to have mental capacity. We were told we could object if we wished . However, if we were successful in triggering a DST and then were successful with the DST, she would have to go to a Nursing home and would get a weekly amount to pay for nursing care. She would still have to pay for her care home fees as she has savings above the threshold. Four weeks later she is moving to another care home, although she really wants to go home. She has no physio now and it is up to family to keep her exercises going though we were told we could refer her for physio.
    We agree that many of her needs can be addressed by social care, but without two people to help with mobility, personal needs etc, her needs become health needs.
    Is it worth asking for another checklist?

    • Brian Barnes 4 years ago

      Doesn’t dementia count as a health need, rather than a care need, from which full funding follows? I am just beginning my interaction with this problem for my mother in law who has Alzheimer’s and failing heart and has just entered a home where she is being assessed – for fees. Her GP referred her into care on health grounds, including heart problems and dementia but it seems the local authority overuled her and we tried care in her own home first, but she deteriorated because among other things she couldn’t take her medicine regularly (and neither could the carers, it seems). The matter of a Healthcare Checklist has only been mentioned when I brought it up. We are told she was assessed by the care managers on the ward after a week in hospital and Healthcare check ‘wasn’t triggered’. The home seems to be full of elderly with similar problems who must be in the same position and being charged for care, which makes me think we have no chance of turning the ship around.

      • Chris -G 4 years ago

        Brian. It is the needs displayed which are compared against some dodgy criteria, that count. The actual diagnosis is considered to be irrelevant.

      • Angela Sherman 4 years ago

        Brian – some of my response to Janet here may be helpful for you. If your mother in law did genuinely have an assessment on the ward, there should be a completed Checklist form and you should have a copy. You, as the family, should also have been informed in advance that the Checklist was to take place, and you should have been invited to attend and to input. Insist that this is done again, but this time with your involvement.

    • Chris -G 4 years ago

      Janet. Any type of need if it is complex, intense or unpredictable, is a health care need. Social care needs should not really be being searced for by asessors.

    • Angela Sherman 4 years ago

      Janet – if your mother’s Checklist triggered the need for a full multidisciplinary team (MDT) assessment, there is no need for another Checklist. The full assessment should take place and, until that is done, your mother should continue to be funded by the NHS. If there has been a dramatic improvement in her health and a dramatic reduction in her care needs, this might (possibly) warrant a new Checklist but I would say this is unlikely from what you’ve described. The person who has judged your mother not to have capacity may not understand what capacity means: it’s not a general view of a person’s cognitive ability; instead, it’s about the ability to make a specific decision about a specific thing at a specific time: Many health and social care professionals seem to misunderstand this. If your mother is successful in securing NHS Continuing Healthcare funding (CHC), she does not have to go into a nursing home. She can be cared for in any setting that is safe for her: If your mother receives CHC, she will be fully funded – not simply receive the weekly nursing payment. She would not have to pay any of her fees – not for accommodation, not for social care, not for anything. The weekly nursing payment you mention is called Funded Nursing Care (£156.25/wk) and it is for people in nursing homes who do NOT receive full CHC. It sounds as though you have been misinformed about that. Insist that the MDT full assessment is carried out as a matter of urgency.

      • Janet Benson 4 years ago

        Thank you for your advice.
        We are happy with the current decision that our Mother is judged not have capacity. The first time she was assessed , and judged to have capacity – we were not happy. It was one of those cases, when the questions asked were similar to the MMSE. The social worker concerned said she could return to her home. In our opinion she doesn’t see the risks and her dementia prevents her from remembering how things were at home before the stroke. She is remembering the situation as it was a few years ago.
        She has made a little improvement since the first successful checklist(only in her mobility) but this is not consistent and she needs 2 persons to help her. She is unsteady and is always at risk of a fall. We remember reading somewhere that a problem doesn’t cease to be a problem just because it is being managed.
        I feel there is nothing lost by asking for the checklist to be re-done. I’m not sure who we ask as Mother moves to a new care home this week. Would it be the GP?

        • Angela Sherman 4 years ago

          Yes, that’s correct Janet: a managed need is still a need, and it’s the underlying needs that count. A social worker, other health or social care people, a district nurse and/or the care home itself can all initiate the Checklist. GPs often seem to know very little about Continuing Healthcare unfortunately.

      • Chris-G 4 years ago

        Too often practitioners fail in this matter of cognition and pose simple questions and get immediate answers that are often correct. How is it correct to withdraw post operative care to a brain injured semi sedated and infected patient, simply because he waved them away when asked if he would take the meds. That stupidity caused two rounds of resuscitation and an extra week in hospital.

      • Bill B 4 years ago

        It is this sharing of experiences that is so helpful. My mother in Law has been through the Checklist (a Social Worker with myself, my wife and sister in law). Whilst I was waiting to see if the Social Worker would raise the topic of CHC, she did so almost as an after thought. When we had completed the Checklist (with 4 categories ‘scoring’ ‘A’) the Social Worker said that we now had to move to DST and that she had probably been “a bit generous”. Needless to say, we will be ready for the imminent DST meeting, although the supposed MDT will only be a Social Worker and a Nurse (is that adequate and complying with the National Framework?).

        • Chris-G 4 years ago

          Bill B, Yes they only need a Medical person and someone involved in assessing people for social services. So a junior social worker and a Physiotherapist would be acceptable but is is usually a Nurse and a social worker. If mother in law is in a home then it is worth checking the notes some time before and comparing them against any observations of your own. If at home or their own home then you will need to perhaps make a list of needs that you have observed. Look at the criteria of the National Framework, they are Intensity, complexity, unpredicatbility. Look at the needs that are being met well and break them down into thee minutest task and make a list of what actually is involved in perhaps making a cup of tea and ensuring that it is drunk. Likewise, do that for any other care need that is linked to the illness or injury.

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