‘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

19 Comments

  1. David Gallone 2 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.

  2. Kelly 3 months 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 3 months 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

  3. Kathy Sawdon 5 months 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 5 months ago

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

  4. Simon Cherrill 7 months 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 7 months 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

  5. Tracey Murphy 1 year 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?

  6. 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.

  7. 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!

  8. 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.

  9. 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.

  10. Chris-G 2 years ago

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

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