When looking at whether your relative is eligible for NHS Continuing Healthcare Funding (CHC) you first have to consider whether they have a ‘primary health need’. In short, they must have health needs over and above what Social Services would ordinarily be expected to provide.
Your relative’s needs will be assessed at a Multi-Disciplinary Team Meeting (MDT) and their health needs will be scored using the Decision Support Tool (DST).
However, the DST is just what it says – a ‘tool’ to help practitioners assess an individual’s healthcare needs across the various Care Domains (listed below) and reach a decision as to eligibility for CHC Funding:
The 12 Care Domains are: Breathing, Nutrition – Food and Drink, Continence, Skin integrity (including tissue viability), Mobility, Communication, Psychological and emotional needs, Cognition, Behaviour, Drugs/Medication/Symptom control, Altered state of consciousness & Other.
Whilst a high score in one or more of the Care Domains may indicate that your relative has a primary health need, you still have to look at the overall totality of their needs – and in particular, consider the four indicators (or ‘characteristics’) and how they impact on the level of care needed. This is the essential point that most people fail to grasp.
The four key indicators are: Nature, Intensity, Complexity and Unpredictability.
So, for example an individual diagnosed with Dementia is unlikely to be eligible for CHC Funding on that basis alone. It is not the diagnosis that is critical, but the nature of those healthcare needs, and whether they require intense nursing, are complex in their management or are unpredictable.
The four key indicators are set out in paragraph 60 the National Framework for NHS Continuing Healthcare and NHS funded Nursing Care (revised October 2018), and are summarised below:
Nature: describes the particular characteristics of an individual’s needs (which can include physical, mental health or psychological needs) and the overall effect of those needs on the individual, including the type (‘quality’) of interventions required to manage them.
Intensity: relates both to the extent (‘quantity’) and severity (‘degree’) of the needs and to the support required to meet them, including the need for sustained/ongoing care (‘continuity’).
Complexity: looks at how the needs present and interact with one or more other conditions to increase the skill required to monitor the symptoms, treat the condition(s) and/or manage the care.
Unpredictability: describes the degree to which needs fluctuate and thereby create challenges in managing them. It also relates to the level of risk to the person’s health if adequate and timely care is not provided. An individual with an unpredictable healthcare need is likely to have either a fluctuating, unstable or rapidly deteriorating condition.
According to the NHS National Framework, “Each of these characteristics may, alone or in combination, demonstrate a primary health need, because of the quality and/or quantity of care that is required to meet the individual’s needs.”
Here’s an example of how you need to look carefully at the four key indicators when considering the interaction between all the Care Domains and assessing your relative’s eligibility for CHC Funding:
Example: Fictional Case study
NATURE
Mrs Jones (not her real name) has Diabetes and was diagnosed with Alzheimer’s disease. She is confused, disoriented and has poor short term memory. Mini-Mental State Examination shows a deterioration over many years.
COMPLEXITY
Mrs Jones is at risk of a seizure or hypoglycaemic attack. She was reported to have a vacant episode preceded by very pronounced jerky movements and tremors.
Mrs Jones needs staff to manage and monitor her continence needs which at times are problematic. Because of her memory loss she needs prompting to go to the toilet every 2 hours. She has a history of haemorrhoids and chronic constipation. However laxatives are usually ineffective and she needs District Nurse intervention with manual evacuation at times and phosphate enemas.
Due to Mrs Jones’s diabetes, she requires a managed diet to ensure that her blood glucose levels remain as constant as possible. She frequently suffers with diarrhoea, and on particularly bad days, must only take a small diet to avoid further aggravating her bowel.
Her Blood Sugar levels are high and are monitored by the District Nurse. She needs regular courses of antibiotics for infections. She was prescribed Metformin, but her appetite had deteriorated. She is very shaky and unsteady on her feet.
Mrs Jones is susceptible to weight loss because of her sporadic bowel, health and diabetic condition, and staff must ensure that her nutritional needs are met sufficiently. Staff are needed to observe her and record her dietary intake, and the District Nurse has intervened to educate staff about her diet.
Mrs Jones needs trained staff to administer and monitor her medication for its effectiveness. She has a complex regime which is frequently reviewed. Mrs Jones has a history of depression, and takes sertraline to alleviate some of the symptoms.
She suffers from tremors and shakes, and Diazepam has been tried to alleviate her anxiety and reduce her movements. However this proved to be ineffective and she was prescribed Lorazepam.
Sometimes Mrs Jones has swollen legs and these need to be kept elevated to dissipate built up fluids. As Mrs Jones is diabetic, special attention is due to her extremities as she is at risk of neuropathy and specialist advice may be necessary.
INTENSITY
Mrs Jones’ mobility is greatly affected by her tremors and dizziness which put her at risk of falling. She needs to be checked every 2 hours, and she needs staff to stay with her whilst she is getting washed and dressed.
Mrs Jones suffers with bronchitis and other chest infections and needs antibiotics. At one point. Staff have to monitor and observe Mrs Jones for any symptoms that may indicate a latent chest infection and alert her GP as appropriate.
Mrs Jones is diabetic and must adhere to a diabetic diet to maintain constant blood sugar levels and prevent hyperglycaemic seizures. Staff are responsible for providing Mrs Jones with suitable meals and monitoring her blood sugars for fluctuations.
Due to her dementia, she needs assistance as she can no longer sequence clothes, and forgets one task to the next when washing and dressing. She needs prompting to use the toilet, and now needs full assistance to locate the toilet. She needs staff supervision to ensure she doesn’t use inappropriate creams on her face, and these have had to be removed. In particular, with her recent basal cell carcinoma.
UNPREDICTABILITY
Mrs Jones is suffering from Alzheimer’s disease and is therefore prone to becoming confused and disorientated, putting her at risk of falls and emotional trauma. Staff have to ensure that her environment remains safe and hazard free to minimise risks.
She is unable to assess risks and hazards in her environment and has no insight into her condition and the impact it has on her activities of daily living and her health needs. Staff report that her memory has significantly deteriorated with decreased activities of daily living, and she is now doubly incontinent.
She was initially able to express her needs and communicate; however her communication has deteriorated and is no longer reliable. She is able to speak but is repetitive and anecdotal in her communication. She needs staff to anticipate her needs and to make decisions for her.
She has bleeding and painful piles and is very embarrassed about her continence status. On one occasion she locked herself in the toilet and would not let staff in, because she had faeces on the floor. She needs staff to bath her everyday to maintain good hygiene.
Mrs Jones has suffered a marked deterioration in her mental health. She becomes anxious and confused and needs staff to offer reassurance and support her with daily tasks and situations.
She can sometimes express a desire to die. Staff must monitor Mrs Jones to ensure that she does not try to harm herself, and that reassurance is given in a timely manner to prevent low mood progressing.
Mrs Jones is frequently noted to be dizzy and shaking, which can prove to be problematic as she is currently quite mobile and could fall easily. Staff support Mrs Jones with all her mobility needs and assist her as much as possible.
On particularly bad days, Mrs Jones is required to relocate to a downstairs room to prevent her falling down the stairs, as she could forget that she needs assistance to descend. Mrs Jones has fallen on several occasions. Her involuntary jerking movements which appear to be a fit or a hypoglycaemic attack are more pronounced when she is anxious.
Mrs Jones is not able to dry herself properly after bathing, and this leads to red and sore areas developing in vulnerable areas. She is at high risk of developing pressure sores. She requires Canesten cream to be applied to fungal infections and daily creaming of dry areas.
Summary:
The example shows how you need to take a holistic approach and look at the overall totality of Mrs Jones’ needs in conjunction with the four key indicators, when assessing her eligibility for NHS Continuing Healthcare Funding. It is arguable that her needs could only be managed effectively by skilled intervention over a sustained 24 hour period to prevent further deterioration.
Read these other related articles which are helpful:
‘Apply for NHS Continuing Healthcare Funding if your relative has a ‘primary health need’…
‘Primary health need’ made simple – what does it really mean?
‘Take a holistic approach to improve your chances of getting CHC Funding’
As well as reading our website and downloading e-book, ‘How to get the NHS to pay for care’, you can also subscribe to our Bulletin and sign up today on our website for further information.
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I’m very confused about all of this.
In the full chc assessment today, my mother scored 1 severe, 2 high and 4 moderate, yet was refused.
This seemed like a very high score to me. One of the moderates I do contest, the nurse told me that the high description was wrong, but only applied to patients who couldn’t talk at all, however that was not what the description stated and my mother matched that written description perfectly.
Also they downgraded her lots of times, despite admitting that the higher description did for my mother in lots of ways.
Seems to me that it’s a pointless exercise, as the result is now that the care home have put their fees up to accommodate all of my mother’s health needs.
Hi Sue – yes it can all be very demoralising. Please feel free to all us if you’d like to chat this through. We may be able to help. – 0161 979 0430. Kind regards
Do you or anyone know about the correct procedure regarding ‘the scoring’ after a CHC review meeting?
Our relative did get the funding again but we have just requested the report ( a year later) to find that one of the scores has been lowered from ‘severe” to high’. In the meeting we all felt that it had been agreed it would remain at severe. It wasn’t challenged by the assessor at the time and they seemed to agree. the meeting wasn’t minuted. Do they have the ability to change the scores after the meeting?
Hello Tom, I’m not an expert but have learnt quite a bit during the last few years, having fought for CHC for my late father.
My advice is to complain and keep complaining! You should have been given a copy of review outcome/DST. Even though you had a positive outcome with regard to the funding you should have been aware of how that decision/recommendation was reached. You have been denied the opportunity to comment/agree/disagree with the outcome and that is unfair.
Please, please fellow Care to be different contributers can we please keep this thread going. I would appreciate any advise on how to link the four key characteristics to prove a Primary Health Care Need. I am waiting to go to IRP and need as much up to date advice as possible. Dad had his funding withdrawn following FTPT at the 3 month review as he didn’t die immediately and his condition stabalised. The decision of the individual challenge and dispute review accepted that his care could best be met in a nursing home as the majority of his needs were to do with the delivery of washing,dressing elimination,feeding and Moving! In other words as a sufferer of Parkinson’s disease and Advanced Dementia he could do nothing for himself. The review concluded with the following statement, “there is intensity, complexity and unpredictability but he was not “overly complex, intense, or unpredictable and therefore did not present a Primary Health Care Need!
This is a ridiculous statement. Admit he has the key characteristics and then try and deny funding in a 6 word sentence…….not overly complex,intense or unpredictable!
He was a receipient of funding through FTPT, this alone should be clear evidence that he had a PHN, otherwise how could funding be commissioned?
Come on Care to be different and readers,I am waiting to hear your expert views and advice.
Good Luck everyone. M
Hi M. Unfortunately knowing the law and getting it applied are two different things. The NHS never answer and social services give you obtuse answers. This has been my experience over the past year. I am extremely stressed and frustrated also and my MP is backing me in fact we have written to Matt Hancock secretary of state as other cabinet ministers just gave obtuse answers to my questions. My initial strategy was to refuse to pay care home fees because I was certain my mother should qualify for CHC. But it penalises the home and a parent could get evicted from the home or transferred back to hospital to end up in some other less desirable home which would affect you parents well being . But the nhs also have a bigger responsibility to safeguard your parents well being as they are the Authority. I refused to pay for 3 months thinking the nhs would capitulate but they didn’t I owed the nursing home nearly £12000. I caved in because I didn’t want to risk or cause mum any due stress nor penalise the home otherwise what’s the worst the nhs could do to you, take you to court for neglecting your duties as attorney? When as attorney you have a legal duty to protect your parent’s financial interests and you are also fighting for their legal right to health care? In court is where we unfortunately need to go to enforce our rights. Nobody really wants to go there especially the NHS as they know they don’t have a leg to stand on. If they move your father to hospital the care is free again. If they want to put him in a new home and you still refuse to pay, It changes nothing.. Also under Article 8 of human rights you have a right to a family home life. The nursing home is your dad’s home. Again how do you enforce this, you go to the police and press charges for assault and abduction? It starts getting messy. The bottom line is you have to exhaust the appeals process before you can seek legal action and this is all that matters. The NHS will take it right to the line. The Ombudsman is free but he is not truly independent of government. If he is not sympathetic to your case he could probably introduce reviews that will delay a judgment only to start up a new review process. If you go straight to court after the IRP and skip the Ombudsman the NHS will make up its mind pretty soon. I am preparing for the IRP I am quoting all the legalities and framework and also trying to paint a picture of mum’s condition and present a moral and political argument also. Its 8 pages long. It will probably be thrown in the bin by the IRP immediately after reading the first paragraph. Quite frankly I don’t care as it is a legal matter and can only be solved in court if they don’t grant CHC as the only thing that interests the NHS is budgets. Patient centered my backside institutional care is like Primark knickers and socks, one size fits all at Armani Prices. A lot of solicitors that are experts in this area will help you put a case together for the appeals process but they won’t litigate.
Hi David, Thanks for your support. I feel your anger, frustration and stress. I agree entirely and have been through the exact same circumstances as you, ie: withheld fees, sought the help and met with local MP, all to no avail. We employed a supposedly reputable law firm, who sadly didn’t present a case any better than I put together. In fact I would go as far to say, my presentation for appeal was far more detailed.
The family spent a considerable amount of money in seeking help through the many law firms offering help with CHC, but when you actually get to talk to many of them, they really haven’t got any idea of what is required to prove eligibility. In fact I found myself thinking I knew more about the NF and the DST than many of the professionals did.
Knowing that CHC/CCG will not accept any legal challenge around COUGHLAN and GROGAN, I decided to go it alone and focus my effort on the NF and the key indicators.
I am also preparing for IRP, (WHICH IS WHY I’M LOOKING FOR EXPERT HELP ON THIS SITE ON PHN & KEY INDICATORS)
and finding it difficult to keep my document concise and take out the emotion! Very hard to do when you are having to think of your relative as just another number in this game! Like you, mine is currently 12 pages long. Quite how I can edit two and half yrs of work into a couple of pages is mind boggling, especially as my late father was deemed eligible for FTT and FNC at the point of entering the nursing home. Actually to be correct he was deemed eligible for FNC at the 1st MDT/DST to only 6 weeks later have the FTT commissioned.
So much of the NF tells us that the assessors should have anticipated the deterioration in his needs, as well as preventing unnecessary repeat assessments, which is what CHC wanted to do by trying to prevent the FTT being commissioned. So basically, just 6 weeks later, CHC wanted to subject the family to another assessment to argue the T*** about, if my father’s condition had worsened. We didn’t accept this and pushed for the FTT to be applied as the NF stipulates.
It makes my blood boil to think how CHC manipulate the NF to deny eligibility. The abuse of the NF and those who have abused their authority should hold their heads in shame. Quite how a CHC nurse assessor can over ride the decision of a GP is yet to be established.
So David, all I can offer you is Good Luck for the IRP. I think we both know it’s a waste of time and effort, and all we are doing is keeping people in jobs!
PLEASE PLEASE CARE TO BE DIFFERENT I would value any further information/help on Severe Cognitive impairment and how this affects all other domains, especially mobility. Also more please on this thread, which has been really useful.
As my father entered his nursing home he had a diagnosis of Advanced Parkinson’s disease/Dementia, and whilst I know that this had no bearing on the DST, I still grapple with the fact that everything he suffered was as a result of his diagnosis. Having just watched the excellent BBC documentary on the Parkinson’s drug trial, I don’t think anyone could not be moved to tears by the ravages of this cruel disease! It’s available on iplayer for those who didn’t catch it.
Maybe those who denied my father’s eligibility need to watch a few more of these documentaries to understand about degenerative neurological conditions! My father was in a state of progressive deterioration. He wasn’t going to get better. He was, through the FTT process deemed to have an PHN, but 3 months later CHC said he was no longer eligible, in other words he no longer had a PHN. It would seem that his degenerative neurological disease had been cured!
PS: This is the kind of emotion that I won’t be putting into my IRP presentation, even though I want to!
David , did you win your IRP appeal?
Chc is a legal decision not one of NHS policy. The dividing line between nhs care and social care was established in the Coughlan case. By default it is not the NHS that make the decision because the decision is based on the limits of care social services can provide . Care Act 2014 section 22. The law only gives a general guidance under the Act . This is why it is reasonable to compare your needs with that of Coughlan this is what the courts did. Are your needs the same or worse? Coughlan’s needs were judged to be well outside the services that social services could provide. The primary Heath test is not the test performed by the courts. There is no legal definition of a primary health need. In Coughlan the phn was mentioned once in that if there is a phn and the Secretary of State agreed and this is the reason an individual is placed by a local authority in a nursing home then the NHS is responsible for the full cost of the care package. The criteria nature intensity complexity and unpredictability are illegal in law. (Grogan case). They create an altogether illegally higher threshold for chc qualification. They focus on the intensity of the treatment rather than the needs and condition of the patient . In Coughlan and in the National Framework it’s about the needs of the individual not the treatment. Pamela Coughlan has a video online you can see her condition and she is still alive and campaigning for chc. Chc cannot be denied on an input related rational see Framework. The chc process is a procedure you must go through before you can access the Ombudsman. After which it is a judicial review. It’s one thing knowing the law and it’s another thing getting it applied. But if your needs are equal to or greater than Pam’s then there is no reason you shouldn’t win. What has effectively happened is that the NHS has reclassified health care as social care and introduced the Funded nursing care contribution to pay for the registered nursing care element of the care that social services are not allowed to provide and with the view that a patient cannot be expected to pay for and not fully appreciated their duty to provide CHC which covers all your care costs. The government will not admit that it has been acting illegally for 25 years they have the money to put things right. Think about this while chc assessors lie in the comfort warmth and safety of their own beds and enjoy a freedom that their fathers and grandfathers risked their life’s to fight for ,only to deny them their legal entitlement for health care in their twilight years. Is this fair?
Thanks David! Couldn’t agree more with your piece. The Law should trump every time, but sadly it makes no difference what you say about the Coughlan/Grogan cases at MDT/Reviews. They are not prepared to listen, let alone accept that the NF is based on these landmark cases.
I have my IRP date and letter giving me details of the purpose of the review, and it based entirely on the PHN by looking at the care needs in detail and relating them to four key indicators. I can take along anyone I wish but if the person I take is a legal advocate the panel WILL NOT consider any legal challenges to either the eligibility criteria or the responsibilities of the NHS. Quote: There is no role for legal professionals a the independent review panel and anyone who speaks will be restricted to comments only about the individual’s needs. So sadly I wont be able to use any of your argument.
So, basically a waste of time hiring a lawyer. I will probably be faced with the same CHC individuals, who will be there to justify their decisions and exonerate themselves!
The process we have gone through has been like many others on this site, stressful! There is no justice for families when faced with Commissioning Groups who are tasked with ” Financial Gatekeeping” and have no regard for the person at the centre of these lengthy disputes.
I am trying to remain positive and present my case using PHN and the four key indicators, but I don’t hold out much hope, but at least I will have my final say and move it on to the Ombudsman.
David, if you have any advice on PHN and the key indicators then please post, or anyone else who has useful tips on the K.I. My father was severely cognitively impaired, which impacts on every domain, but would value more help on this.
Good Luck to everyone and keep up the good work Care to be Different!
This is an excellent piece, which I have found useful as I prepare to attend my late father’s IRP.
I have fought CHC/CCG for the past two and a half years. Three Arch Lever folders full of documents and letters.
To get to IRP we have gone through 2 failed checklists, appeal accepted. MDT/DST- failed and appealed (this is what the IRP will focus on). FNC was awarded instead, which is yet another farce! FTT (Which was refused!!!!!) we argued with CHC about flouting the NF on this and the eventually gave in and the FTT was commissioned, only to be withdrawn 3 months later at the review, which we appealed on numerous grounds. The whole process is led by CHC individuals who believe they have the authority to over ride decisions of a Doctor, as was the case when the final FTT was submitted by the nursing home GP and manager in the final 6 weeks of my father’s life. The CHC nurse assessor denied eligibility even at this stage, by ring the nursing home to ask for further evidence of needs, and went as far to say that my father’s needs were stable! He died!
The point I want to make about the Key Indicators is that it seems to me that CHC/CCG will use these to justify not completing the DST accurately.
In our case the DST was incomplete. The assessors argued about the level of need for pyschological and emotional domain and it was left unawarded. The Social Services Assessor was in between levels and even wrote this on the DST. This should not happen if you follow the NF. I know I have read somewhere about not choosing a level in between scores! The lead Assessor should have known this and not allowed this to happen and awarded the higher score. She didn’t.
The point I make is that the evidence considered by the Individual Challenges and Disputes Review (local resolution)
which was completed by those we had complained about and had handled the case from the outset – so not independent!) Said:
1. It was not necessary for them to agree on a level of need as the held differing views.
2. In respect of the outcome letter ******** you are correct that the disagreement on the level of need is not mentioned,
but there is no need to do this in the letter. The purposed of the letter is to inform you of the outcome of the assessment, using the four key indicators, why the decision was made not to award CHC.
WHAT? So the argument is why have a DST at all, if the Scores have no bearing on eligibility?
How can I argue my case if no level is awarded.
The conclusion they gave was to focus on the four key indicators to determine if my father had a PHN.
Nature: a paragraph to describe his health and well-being – with incorrect information and nothing to portray his paranoia and emotional distress as a suffering of Parkinson’s disease and Dementia.
A few lines on Intensisty, Complexity and Unpredictability and then the PHN test!!!!
His needs are could best be met in a Nursing Home environment (in other words he needs nursing!)
But his needs are mostly to do with daily living needs ie washing, dressing, elimination, feeding and moving!!!! Yes, that’s what’s documented. So he couldn’t do anything for himself, not even empty his bowels without intervention.
This is the last few lines: There is intensity, complexity and unpredictability, but these do not extend to all of his needs and in the main, he is not overly complex, intense or unpredictable. For these reasons the Review concludes that my father did not present with a Primary Health Need and is therefore not eligible for CHC funding!!!
I welcome the expertise and comments from the readers of this excellent forum.
Good luck to everyone going through this horrendous fight.