‘Primary health need’ made simple – what does it really mean?
In 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
Nicely written. I think that many posting with questions will thank you.
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.
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.”
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.
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.
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?
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?
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
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?
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.
Everybody who has had a hospital admission should be offered a continuing care assessment before discharge
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
Hi, I know its am old post but hoping I will get some advice.
My 86 years old mum has Alzheimers, diagnosed 3 years ago. She was living at home on her own and was self funding for her care that she had twice a day, I am her Power of Attorney for property and finance. My mum took a turn for the worse and was admitted to hospital for a suspected water infection and anemia. We had waited 3 weeks for UTI test results, we had 3 samples done and all came back either spoilt or inconclusive. Once in hospital, they found that she did have a UTI, she was anemic and they also found a small chest infection. They started to treat her for this and I was hoping she was going to be home again within 10 days. Unfortunately after just a few days in hospital, my mum had a fall, they found her on the floor of the ward. She was in lot of pain. They done an x-ray on her spine, this showed no damage. Left her for the weekend, thinking with pain relief the pain would reduce. But on the Monday, when they realised the pain was not going and through further assessment, they decided to do another x-ray, this time on her hip. This showed that my mum had broken her hip, when she had the fall. Up until she was in hospital, my mum had NO falls at home or anywhere else, I checked this with her carers to confirm. On the Wednesday, they operated and she had a hip replacement. Since having the operation (nearly 4 weeks ago now), my mum is unable to walk and her speech has been virtually non existent. Just sounds for words, noises with her tounge and the cry of “mum” virtually all day. Before the operation, she was walking and talking. She was moved to another ward in the hospital that can help her recover, although she has improved a little, she is miles away from being anywhere near how she was prior to the operation. They have today moved he to another hospital for further assessment. I am told this will be funded by the NHS, but I am getting very worried about what happens when they decide she has been assesssed and needs to be moved to either a care home for 24/7 care, or home again for what they have said could be 2 carers 4 times a day. Who will be liable to pay for the further care? Mum owns her house and still has a good income from her pensions. Surely if she has been under NHS care and its through their own negligence that she needed to have an operation, it should be paid for by the NHS. I am right or wrong on this? Is there anyone that can recommend what I should be doing now? Even now after chasing the ward that she had her fall, they are not being responsive in letting me see the report into why or how she fell. Something just doe not seem right to me.
Any help would be very much appreciated.
Thank you
[…] package of free-funded care provided by the NHS that is free at the point of need if you have a ‘primary health need’ and which is not means-tested. Arguably, had her mother been properly assessed at the outset […]
Whilst I note that posts her are few and far between they are nevertheless of great help to some I suspect. Can I offer a positive note and an effective way in my experience of overturning decisions by difficult CCG. Long story short. Family friend was awarded CHC but that decision was reversed by the CCG following a so called “verification”. (rules say they cannot do that except in four clearly defined circumstances) This CCG decision was immediately appeal and unbeknown to the CCG I applied for the CCGs “Verification Policy and Process” as an FOI. Got the usual handoff about how good the CCG verification process was. Then hit them with a formal complaint (copy ombudsman) pointing out that they had declared via the FOI that they did not have a verification process. Family friend suddenly received circa £80K and full funding. Whilst I know that there are some good CCG out there always remember that the majority are there not to spend money and thus spin them on the fishing line until you break it. Track all correspondence, forget phone calls and file everything! That how I defeated this particular CCG