‘Primary health need’ made simple – what does it really mean?

‘Primary health need’ made simple – what does it really mean?

Jargon - primary health needIn NHS Continuing Healthcare assessments you’ve no doubt heard the expression ‘primary health need’

It’s a curious thing – because in other areas of NHS healthcare – e.g. going to see your GP, being admitted to hospital or accessing other kinds of NHS services, the chances are you’ll never hear the words ‘primary health need’.

Why? Because it’s an expression that was included in the first main NHS Continuing Healthcare funding assessment guidelines in 2007 (the National Framework for NHS Continuing Healthcare and NHS funded Nursing Care).

It’s an expression that was created to describe eligibility for NHS Continuing Healthcare funding.

A ‘primary health need’ is a concept, not a legal definition of care or care funding.

Page 7 of the National Framework (October 2018) states:

Primary health need’ is a concept developed by the Secretary of State for Health to assist in deciding when an individual’s primary need is for healthcare (which is appropriate for the NHS to provide) rather than social care (which the Local Authority may provide under the Care Act 2014).

So the first point to make here is not to get confused by the terminology. The concept is actually very simple – as we explain here…

Let’s look in more detail at what a ‘primary health need’ actually is

…plus what it means and how it affects you when being assessed for NHS Continuing Healthcare.

The National Framework guidelines were drafted in response to the Coughlan case, a landmark case in NHS Continuing Healthcare law:

In simple terms, there is a dividing ‘line’ between care that the NHS must pay for and care that is the responsibility of a local authority.

  • When a person’s care is the responsibility of the NHS, that care is free of charge.
  • When it is the responsibility of a local authority, the person may be means tested.

A ‘primary health need’ is simply a way of describing that a person’s care is on the NHS side of that line.

At this point it’s worth reading about the Coughlan case – because it was the judgment in this case that established the dividing line.

Essentially Pamela Coughlan challenged a decision that her needs were on the local authority side of that line, and successfully argued in the Court of Appeal that the NHS should fund all of her care.

The description of a ‘primary health need’ in the National Framework comes from the Coughlan case:

In a nutshell, a person has a ‘primary health need’ when the nature of their care is beyond that which a local authority can legally provide. Just like in Pamela Coughlan’s case: her care needs were the responsibility of the NHS to fund.

So a local authority cannot take responsibility for care that is on the NHS side of the line. If it does, the local authority will be in an illegal position.

But how do you know which side of that line your care needs fall?

Essentially, by going through the NHS Continuing Healthcare assessment process.

Questions have been raised, however, about the legality of the assessment ‘tools’ and eligibility criteria in Continuing Healthcare guidelines; if Pamela Coughlan were assessed against them, there is some debate about whether she would actually have been found eligible.

This excellent video by Professor Luke Clements explains more.

That said, the assessment process (the Checklist, the full multidisciplinary team (Decision Support Tool) and the Fast Track) are the assessments that people needing care do currently have to go through – and so it’s vital to familiarise yourself with them.

Keep in mind always, though, that any assessment for NHS Continuing Healthcare must be Coughlan compliant. In other words, it must comply with the judgment in the Coughlan case – and take account of that dividing line we mentioned earlier.

The National Framework itself on page 153 confirms that Pamela Coughlan’s needs were of a level that meant she did indeed have a ‘primary health need’:

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

How does a ‘primary health need’ relate to the Fast Track process?

A person whose condition is rapidly deteriorating and who may be at end of life should be Fast Tracked through the NHS Continuing Healthcare assessment process. Once they’ve been Fast Tracked, they should automatically be deemed to have a ‘primary health need’, as outlined on pages 63- 67 of the National Framework (revised October 2018):

217. “Individuals with a rapidly deteriorating condition that may be entering a terminal phase, may require ‘fast tracking’ for immediate provision of NHS Continuing Healthcare.”

218 .”Therefore, the completed Fast Track Pathway Tool, with clear reasons why the individual fulfils the criteria and which clearly evidences that an individual is both rapidly deteriorating and may be entering terminal phase, is in itself sufficient to establish eligibility.”

Read more about the Fast Track process here

In summary, saying that someone has a ‘primary health need’ is the same as saying they are on the NHS side of the funding dividing line – and therefore eligible for full NHS Continuing Healthcare funding.

How to quickly find what you need in the guidelines

Read more about the difference between healthcare and social care needs

Read about the Grogan case

The vital question to ask the social worker

If you’re new to Care To Be Different and to NHS Continuing Healthcare, the links on our Get Started page will help you

28 Comments

  1. Richard Saul 5 months ago

    Help – my mom has just been assessed for NHS continuing health care. Before assessment, she was moved from a care home to a nursing home and placed in a more secure unit. The care home asked for her to be moved as her actions were causing problems (attempting to bite, hiding in wardrobes, etc…). The assessment determined the actions were frustration at not being able to hear or see very well, although I believe much of it is a mind set that staff are against her. She needs help with bathroom activities, but is generally alert and with it. She is now stuck in this unit, but should be moved to where care and help with medication and bathroom activities exist. I have no idea what type of care this is placed under and no one seems interested in sorting it out – I would be most grateful for any advice

    • Paul2 5 months ago

      Hi Richard,
      So your mom meets the CHC funding criteria? right.
      So maybe the previous care home may not be making sufficient profit I wonder?
      I can’t tell if your mom was in a normal resident’s care floor, but it sounds like she is in an EMI sectioned off floor.
      Ids there a pin code access to stop the patients getting out?
      My mom was in EMI locked down mental section 24×7, but she did not qualify for CHC funding. Still fighting the case though.
      She was violent to others, holding knives at meals times to patients faces, and was also hospitalized twice with male patients pushing her to the ground. She was found in wardrobes too ! The staff have to perform SAFEGURDING skills for violence!!!!

      ASK for MCA/DOLS process for your Mom, to deny her rights and freedom if being locked up.
      Mental Capacity act.
      Mental Care Act (MCA), or sectioned as per Section 117, for her protection and loss of liberty to be locked away within a 24×7 mental unit providing health care, for their own safety and protection from the public.
      National Framework quote: PG 9 When is it appropriate to involve an Independent Mental Capacity Advocate (IMCA)? 9.1 An IMCA does not routinely need to be appointed in the context of an NHS Continuing Healthcare assessment. However, NHS bodies and LAs have a duty under the Mental Capacity Act 2005 to instruct and consult an IMCA if an individual lacks capacity in relation to, serious medical treatment or a change of accommodation for a certain period (at least 28 calendar days for a hospital admission or a stay of eight weeks in a care home), and has no family or friends that are available (or appropriate) for consultation on their behalf .

      Mom should be getting a full 29 plus care home log reporting , daily, weekly , monthly and annual reviews.Here goes:-
      1. Chiropodist visits (records held)
      2. Doctors Visits
      3. Opticians visits
      4. Dental visits
      5. Collaborative Care logs <— Important “Collaborative Care” is Nursing Care
      6. Residents Daily Report
      7. Residents Daily needs care plan
      8. Residents Record File Monthly Evaluation
      9. Residents handling Assessment
      10. Residents Ongoing Review Form – every 6 months
      11. Residents Weight Monitoring ( gain or loss)
      12. Dependency Assessment Evaluation ( monthly)
      13. Aggression Reports ( Care Monitoring Log)
      14. Moving and handling assessment
      15. Food monitor Log
      16. Nutritional Monthly Evaluation
      17. Care Monitor Log
      18. Dependency Assessment Waterflow
      19. Investigation/Specimen Details
      20. Pressure Sore Risk Assessment
      21. Daily activity and Recreation Record
      22. Authorisation for Administering Flu Vaccination
      23. Monitor logs – every morning, afternoon and evening – documenting- food , fluid, catheter chart, bed
      turn chart, signed by carer and senior staff.
      24. Assisting Clients Each Morning logs (out of bed, assist toilet, wash and dress, dental hygiene,
      applying creams prescribed, tidy room and bathroom (and no items to be lying around), among others
      25. Toileting Charts
      26. Night Checks Record – on every hour, with status is sleeping, incontinent
      27. Bath record
      28. Observation Charts ( Sheraton Court held these charts for EMI patient’s recording incidents)
      29.Including staff training and skill set for “Safeguarding” of mentally ill patients and
      30. Administration of medicine regimes
      31. Patient “Health of the Nation Outcomes Scales”
      Where the HoNOS consists of 12 items which measure behaviour, impairment, symptoms, and social functioning. Required for mentally ill patients.

      There is a lot to learn I'm afraid.

      • Richard Saul 5 months ago

        Thank you for your response, but to clarify mom didn’t pass the assessment for CNHS continuing health care and therefore didn’t meet the funding criteria. I believe this is the correct decision. However, the Social Services worker had moved her from a Care Home to an EMI sectioned off home (pin number access) because of reports from the Care Home and before the assessment. The problem is, she doesn’t need the facilities in this unit and they are charging £1700 a week for her being there (originally £500 a week in the care home). All agreed she didn’t need that level of care, but also agreed she needed more help that the original care home – but nobody is doing anything about it and the cost is mounting up – its over £7000 outstanding at the moment – because she doesn’t need specialist element of the care in that unit, she isn’t getting it, but because she is still placed there they are charging the full amount. I’m at my wits end as to what to do and refusing to pay at the moment.

        • Paul2 4 months ago

          Hi Richard,
          1- watch this video on Youtube of Ian Perkin, and take strength, and refuse to make any further payments.
          https://www.youtube.com/watch?v=FTEsCg0AnTI

          2- Put in writing to them that you believe that your mother is now receiving “nursing care” which is beyond the “legal responsibility of care” by which social services can provide for.
          That, EMI care system and its environment are providing a well managed and controlled environment, to manage and control mentally chronic patients which are not incidental or ancillary to accommodation of the patient; mention “safeguarding” and multiple logs being required for EMI patients, given in its totality, she is receiving nursing care. Quoting :-
          “Local councils should not be required to provide services beyond those they can provide under Section 21 of the National Assistance Act, i.e. the services they fund should be incidental or ancillary to accommodation.”

          Cancel payments and state you are formally informing them that you are in “CHC funding dispute”. That you understand that your mother does not have to pay a penny until it has been finally resolved.

          Also refer them to legislation(law ) of the standing rules:-
          National Framework – Annex B: The Coughlan Judgment – Page 153 section 3: para:-
          • Where a person’s primary need is a health need, the responsibility is that of the NHS, even when the individual has been placed in a home by an LA.(Local Authority)

          Standing Rules “Part 6”:-
          Item 21 – Duty of relevant bodies: assessment and provision of NHS Continuing Healthcare
          (7) In deciding whether a person has a primary health need in accordance with paragraph (5)(b), a relevant body must consider whether the nursing or other health services required by that person are— (a) where that person is, or is to be, accommodated in relevant premises, more than incidental or ancillary to the provision of accommodation which a social services authority is, or would be but for a person’s means, under a duty to provide; or (b) of a nature beyond which a social services authority whose primary responsibility is to provide social services could be expected to provide.

          I also draw your attention to paragraph 40 of the “NHS Continuing Healthcare Practice Guidance” clearly indicating that all professional judgements should be in accordance (compliance) with the Coughlan and Grogan judgements.

          ie, EMI facility IS NOT just for “accommodation” purposes only. It is there to control and manage mentally ill patients in a safe environment, with a full package of care , in its totality, a well managed nursing care package.

          3-
          Tell them you are halting all payments, and protecting her estate, as you understand that to continue to pay any further is a matter of fraud. That due process should be seen to be carried out. That you mother should access to a fair system. That legislation should be used. Her human rights have been presently been denied, by being institutionalized within a mental locked down EMI facility , against her will, or without due process for section 117, or a MCA/DOLS assessment. Insist you have those processes actioned, or that social services confirm they cannot provide care within an EMI facility.
          Tell them to take you to court if they think you are wrong in withholding payments. Important – state you are withholding payments indefinitely, as you are not refusing until a court has confirm or not that legislation has been fairly applied for your mother’s assessment to be now having nursing care.

          4- I am fighting to prove that ALL mentally ill patients submitted into an EMI locked down 24×7 facility IS NOT social Care – I am preparing to go to court on this piece of legislation. I have FOI evidence that my local CCG had not applied NHS England legislation , of the two law cases Coughlan and Grogan, from 1999, for their CHC funding assessments on my mother, or for any patient for that matter.

          5- You could ask social services to take care of your mother in her own home, 24×7 , to ensure her safety and the public’s safety, if they think she is just requiring “accommodation only” in EMI care facility. Also get hold of her care plan records. Is she noted as being CRITICAL in any reporting?

          Hope this helps
          Paul2

      • Alison 4 weeks ago

        I’m so confused! My mum had stage 4/ 5 ckd and had combined heart failure, she was completely off her feet couldn’t walk at all, she managed with help to use a Sara steady, she was doubly incontinent had a reoccurring esbl had no sight out of her left eye, small vessel desease due to tia had a parkinsonism and mental health problems and was under the mental health team and yet with all this the social worker did a financial assessment and her medical needs were totally disregarded as they said it was all to do with her mental health! In otherworld everything was in her head! Mum passed away last year although in the end she was fast tracked for funding, the Dr that did this was actually surprised mum was self funding ! Should I fight to claim for retrospective funding

  2. Richard 8 months ago

    Everybody who has had a hospital admission should be offered a continuing care assessment before discharge

  3. David Gallone 12 months ago

    Dear CTBD,
    I often feel that commentators and Documentaries on CHC miss the point. The Judges in the court of appeal and there were 3 did not use the Primary Health need test approach this is the incorrect test from the start! Wrong framework guidance and is illegal because it does not follow case law. The judges only commented once about the Primary Health Need and that was if the main reason for care was for health reasons then the care was the full responsibility of the NHS and the secretary of state agreed. The test applied by the judges was the one born out of Section 21(8) of the 1948 Care Act which is to be found replicated exactly in the 2014 Care Act section 22. Legislation has not changed. This is “If a service can be provided by the NHS it cannot be provided by Social Services unless it is merely incidental and ancillary to providing the accommodation and of a nature that you would expect social services to provide. Social services cannot provide registered nursing care except only in an emergency, on a temporary basis and only with the permission of the NHS. Where did this come from that Pam Coughlan had Autonomic Dysreflexia – a life-threatening condition which can result in sudden death? So can a stroke or a heart attack probably the most unpredictable condition of all. There is no mention of this in Pam’s own letter where she explains her daily care needs, nor do the judges mention this in the court hearing. This is because CHC eligibility is not based on a clinical condition but on the general condition of the patient and what their daily care needs are required. So if you need a lot of low-level care 24/7 and turning and monitoring and the services of an RGN nurse on a daily basis this will qualify you for CHC because social services are not allowed to provide overnight care, continence care, and such nursing services on a continuous basis. This is nursing, not social services and beyond social services remit.

    • Maureen 10 months ago

      David, this end bit of your post: *So if you need a lot of low-level care 24/7 and turning and monitoring and the services of an RGN nurse on a daily basis this will qualify you for CHC because social services are not allowed to provide overnight care, continence care, and such nursing services on a continuous basis. This is nursing, not social services and beyond social services remit.*

      Would you have a source for this please, I want to include it in an appeal for CHC. Thank you.

      • Paul2 8 months ago

        Hi did you get a reply to this? It sounds so much like EMI care home. Not for accommodation purposes.
        24 x 7 daily care which is a locked down mental institutionalized geriatric unit, requiring 39 plus monitoring logs, collaborative care etc. All documented whether daily, weekly, monthly or annually. To me way above standard social services.Not mentioning “safeguarding” techniques and training when patients hit and push each other over, all above police criminal charges.

    • Paul2 8 months ago

      Hi David,
      Your post about a “lot of low level care 24×7 needs, constitutes for CHC funding. Do you have an example to give this credence without being too specific?
      Our parent had a chronic condition of one of their organs.
      Medically, their brain was shrinking causing great loss of control, awareness and any understanding of their environment or safety to themselves. This being Alzheimers. One example would be that they would run across the road oblivious to any danger to themselves and others round them. Their social services Fair Access to Care rating was “critical” as they were unable to feed themselves with hygiene reasons being important factor, and had issues going to the toilet with faeces still on her hands. The only solution for such patients and what social services wanted, was to lock them away from society within a 24×7 EMI care system. So the environment is an important factor. They would consistently need looking after when going to the toilet ,with faeces on their hands, carpet and bathroom sink. They would also visit other patient’s rooms, use their toilet, and do the same thing to their room. Be found within wardrobes in various patient rooms. If they had not being locked away they would not be any primary health care to maintain.

      I maintain that when a patient steps into an EMI 24×7 locked sectioned ward, their main primary health care need is being managed day in day out,to keep them alive and safe, and not be a danger to themselves or others. Imagine if we let these patients free to wander the streets day or night unattended! Possible law suits!

  4. Kelly 1 year ago

    Hi
    My father has recently been assessed for CHC Funding and found to be not eligible. Would you say that someone who having had a massive stroke and has been left sided hemiplegic, unable to sit unaided as his balance is also gone, doubly incontinence, unable to carry out DoL’s by himself including feeding himself also on soft diet. He also has to be turned regularly as he has lost lots of weight and has a high water low score. I myself struggle to see how this is social care, please tell me if this would come under CHC Funding?

    • Care to be Different 1 year ago

      Hi Kelly – this doesn’t sound right at all. Do get in touch with us if you would like to chat it through. Kind regards

  5. Kathy Sawdon 1 year ago

    Mum has had review of continuing health care funding
    and was thankfully found still eligible.
    I found your website and e book invaluable.
    It has been a difficult and harrowing process as the funding was refused at first. My advice is not to give up.
    Kathy

    • Care to be Different 1 year ago

      Many thanks for your kind words Kathy – so good to hear some positive stories. Kind regards

  6. Simon Cherrill 1 year ago

    Hi. Simple question (at least I thought it was); when should someone be assessed for NHS CHC? This isn’t a fast track scenario. The checklist was completed with/ for my Mum just before Xmas when I became aware of CHC and at my insistence but she had already been in the care of social and health providers for nearly 3 years after a dementia diagnosis. We are fortunate, she is still at home, but I thought the idea of the National Framework, checklist & DST was to remove the subjectivity of assessment? In our case, health and social care professionals did not consider it ‘appropriate’ for mum to be assessed. Given no one told us about NHS CHC or that mum had been considered or the criteria used or the decision it seems both secretive and subjective. How can we challenge the appropriateness of the decision not to put mum forward to the formal checklist if we haven’t been told anything?

    • Care to be Different 1 year ago

      Hi Simon – there is no reason at all why a Checklist assessment should not be carried out at any time. Did your Mum pass the Checklist stage? If so then they will need to arrange a full MDT meeting in order to carry out the Decision Support Tool which will recommend whether she is eligible for CHC Funding or not. Do get in touch if you would like to discuss this via enquiries@caretobedifferent.co.uk Kind regards

  7. Tracey Murphy 2 years ago

    My mother was discharge from hospital with end stage life illnesses, mid 2017. Heart failure, heart only working at 20%, 3rd stage kidney failure and most recently diagnosed with severe sleep apnoea now having to wear a mask every night to assist her breathing. She is bed ridden and totally dependent on the care provided. Continuing Healthcare (CHC) are now chasing a review, but have failed to provide me with medical records and questions that they are to refer to in the meeting. All the bodies who are to assess mum have been evasive to say the least with why they need to assess my mother. Whilst it’s great my mother is still with us, the pressure of CHC threatening to take away funding is now making her more agitated and stressed than she has ever been. Can anyone advise me on the conditions above and are they classed as primary health care needs?

  8. Paul 2 years ago

    My relative was placed ina nursing home from hospital six years ago and thereafter was deemed to be self-funding . We suspect that a Checklist for consideration for a full assessment for nhs continuing care funding was never undertaken and since admission to the nursing home immediately was subject to self-funding which has continued to this date. Does anyone know what the legal position on this is and where can I locate the specific legislation and regulations etc that will address this particular process. My understanding is that the Local Authority should have engaged the process of looking at entitlement to possible NHS Continuing Healthcare Funding before setting up and means testing of her finances and thereafter billing her for her residential care. It appears to me that in the absence of following this process the Local Authority has acted illegally.

  9. Kate Parsons 2 years ago

    My husband was fast tracked with NHS Continuing Healthcare (CHC) as he has a brain tumour and on end of life. We were due an assessment from CHC after three months in a nursing home. There was a mixup so a new assessment is due on 26th February.
    Any tips for us when we have the meeting or anything we should be aware of that will be beneficial to our case. My husband needs 24 hour caring.

    • Chris-G 2 years ago

      Kate, remember that it is needs in close detail that you should concentrate upon. Then examine any input from carers that seems similar to what might be given in a hospital…. Remember, nursing care is limited as far as councils and self funders to what a council could lawfully provide. Registered nursing is not possible at all if the council accepts responsibility. So examine any registered nursing given to date within the home, in close details as to frequency intensity, complexity

      • Mark 2 years ago

        Kate

        My father was also fast tracked in early December for palliative care and is about to go through his three month review. He is bed ridden with a severe heart condition.

        We have heard nothing yet however from the CCG despite the three months being up in less than two weeks. After having ups and down he seems to be improving but has intermittent chestiness and urinary infections. The nurses at his nursing home feel confident his NHS Continuing Healthcare (CHC) funding will be confirmed but we are a little nervous of what to expect.

        Would be useful to feed back on how you get on next week. Good luck!

  10. Paul Clarke 2 years ago

    The National Framework ‘s statement: “The term ‘primary health need’ does not appear, nor is defined, in primary legislation, although it is referred to in the Standing Rules…” is disingenuous to the point of being misleading.
    It is true that the Standing Rules aren’t primary legislation. So what? They are secondary legislation and still form part of the law of the land, and trump departmental guidance like the National Framework (NF). And ‘primary health need’ is more than just ‘referred to’ in the Standing Rules as the NF claims.
    Section 21 (7) imposes two imperatives and permits no wiggle room. To paraphrase:
    Assessors “must” consider whether the healthcare need is more than just incidental to the provision of accommodation or is beyond the normal scope of social services. If either alternative applies, then a primary health need “must” exist.
    Once they have weighed the evidence as required by the NF, the assessors must run this test in order to reach their conclusion, or the decision will be unlawful.
    As a matter of law the Standing Rules specify when a primary health need exists. A working definition would be: “A primary health need is a healthcare need which is more than just incidental to the provision of accommodation or which is beyond the normal scope of social services.”

    • Chris-G 2 years ago

      Paul, the fact that it is mentioned in standing rules is still not a definition. As such it is an even greater disingenuity.

      • Paul Clarke 2 years ago

        True, Chris, but the Rules do provide a clear and mandatory test to determine when a primary health need “must” be present, and consequently when NHS Continuing Healthcare must be granted.

  11. Tracy Begley 2 years ago

    My mum passed away in April 2016. When her health began to deteriorate we requested an NHS Continuing Healthcare assessment. When the local CCG contacted me to make an appointment for assessment I explained that my mum was at that point end of life and I was told if mum passed away they would carry out a retrospective assessment. It is now almost two years later and the assessment still hasn’t been done. The member of staff at the CCG who made the appointment with me denied making it but fortunately there was written evidence in the form of a diary entry confirming the appointment. To say it is frustrating is an understatement because it seems that the CCG’s are untouchable. I have complained to PALS and also the Parliamentary & Health Service Ombudsman but it seems there is very little they can do.

    • Sara 2 years ago

      Tracy, it sounds as though they should have done Fast Track Assessment…in which case NHS Continuing Healthcare WAS due! Have you tried complaining on that basis?

    • Chris-G 2 years ago

      Tracy, if end of life was obvious then Fast Track was the course to take and not some nonsense about retrospective assessments. Gather medical evidence if medics recorded anything. Or use care notes and if the same care staff and nurses are still around, it might be worth working out relevant questions and getting them to write their answers. Fast Track is an uncontestable right…. If rapid decline is apparent.

  12. Chris-G 2 years ago

    Nicely written. I think that many posting with questions will thank you.

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