Part 1. Explaining The Vital Difference Between Social Needs vs Healthcare Needs
If your relative has a pending assessment or review for NHS Continuing Healthcare Funding, then you must read this article.
Many families undergoing an assessment to see whether their spouse or relative is eligible for NHS Continuing Healthcare Funding (or ‘CHC’) are often left bewildered when they learn that they did not meet the eligibility criteria for CHC, or are astounded and outraged when their existing funding is withdrawn.
In many cases, families will be left distraught and frustrated by the whole challenging process, but much of this anguish could have been avoided had they clearly understood the critical difference between social needs and healthcare needs.
What is NHS Continuing Healthcare Funding?
‘CHC’ as it is commonly known by professionals, is a package of services which is arranged and funded by the NHS through its local Clinical Commissioning Groups (CCGs) for individuals who have complex ongoing ‘primary health care needs’. More about this later…
The National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care (revised October 2018) states that health care needs relate to the “treatment, control, management or prevention of a disease, illness, injury or disability, and the care or after-care of a person with these needs (whether or not to the tasks involved have to be carried out by a health professional)“.
Important points you must know about CHC:
1.CHC is available if you are over 18 to meet needs that have arisen as a result of a disability, accident or illness.
2.CHC is not dependent on having a particular illness, diagnosis, condition or disease.
3.CHC is ‘free at the point of delivery’ i.e. when you need it as stated in paragraph 35 on page 14 of the National Framework.
4.CHC covers 100% of the care fees payable, regardless of the individual’s wealth, savings and assets. CHC is free!
5.CHC is payable regardless of who provides care or the place where the care is provided. So, for example, care can be provided in a care or nursing home, hospice, other care facility, or even in the person’s own home.
6.If you are resident in a care home, CHC covers all the care fees, including the cost of accommodation.
7.If you are receiving full-time care at home, CHC covers nursing care plus personal care, such as, bathing, dressing and any additional household cost directly related to care needs.
8.CHC is not means-tested, so wealth should never be a consideration.
In short: CHC is all about putting health needs first, not where you live or how much money you have.
Who gets CHC?
Everyone who receives full-time care and has healthcare needs should be assessed for CHC Funding. However, the public are generally unaware that this free NHS funding even exists! Instead, they are told that they have to pay for their own care and are subjected to means–testing.
To be eligible for CHC Funding, you have to have a ‘primary health need’ which means that the principal reason for care is due to health needs, not social needs.
The phrase, ‘primary health need’ is an expression included in the National Framework for NHS Continuing Healthcare. It is not a legal term, but a description to help identify the boundary between social needs and healthcare needs, and to determine the level and type of care required to meet those assessed care needs.
The distinction is critical in determining which side of the dividing line you fall onto, and consequently, who has to pay for your care.
This is the important bit…
- healthcare needs are provided free of charge by the NHS
- social care needs are provided by the Local Authority (Social Services) and are means–tested
However, in practice, the dividing line can become blurred, as NHS and Local Authorities may battle to suggest that your relative’s care needs fall into the other body’s remit and responsibility for payment.
The landmark Court of Appeal decision in the Pamela Coughlan case (1999), helped to clarify this boundary line and set out the ‘primary health needs test’. The Judgment set out what care could lawfully provide be provided by the Local Authority and what care fell beyond their remit and was the responsibility of the NHS.
Following the Coughlan decision, a Local Authority can only provide nursing care if it is merely:
- incidental or ancillary to the provision of the accommodation which a Local Authority is under a duty to provide; and
- of a nature which it can be expected that an authority whose primary responsibility is to provide social services, can be expected to provide.
As Pamela Coughlan’s healthcare needs were greater than those which the Local Authority could be expected to provide, she was eligible for NHS Continuing Healthcare and entitled to a free package of care.
The key is to look at the individual’s day-to-day nursing and healthcare needs, and consider when taken as a whole, whether they are above and beyond the expectation of the what a Local Authority can lawfully provide. You do this in conjunction with the 4 Key Indicators (or characteristics) – Nature, Intensity, Complexity and Unpredictability of the individual’s needs. Any one, or any combination, of these four Indicators of need, might mean that the individual has a primary health need, and is therefore eligible for CHC free-funded care.
The dividing line between social and health care needs in the Coughlan judgment and the ‘primary health needs’ approach was subsequently incorporated into the Care Act 2014. The Care Act 2014 has been included into the revised 2018 edition of the National Framework for NHS Continuing Healthcare and reinforces the existing boundaries and limits of what care is the responsibility of a Local Authority, and what is the responsibility of the NHS. The Care Act makes it clear that if an individual may be eligible for CHC, they should be referred to the local Clinical Commissioning Group for an assessment.
However, despite this assistance, unfortunately, the boundary demarcation is still not clear enough, and that creates uncertainty and room for the NHS to avoid paying CHC.
Some examples of social care needs to help you…
Social care is often thought of as needing help with things like:
- your well-being
- the activities of daily living
- helping to maintain independence and social interaction
- avoiding risks in vulnerable situations
Common examples of social care needs might include: help with getting in and out of bed, getting dressed and washed, toileting, meal preparation and eating, and assistance when going out shopping or visiting family and friends.
As an example, take an individual who has suffered a partial one-sided stroke. They may be perfectly able to communicate their needs reliably, have full cognition with no behavioural issues, have no breathing problems or incontinence needs, and enjoy a perfectly healthy well-balanced diet. However, they may require additional assistance with dressing, personal hygiene and their mobility, and need someone to accompany them at all times when going out of the home to minimise the risk of falling. This example of social needs may be available through the Local Authority (Social Services) – unless you have enough money, wherein you will have to pay for the care yourself.
Understanding this key difference between social and healthcare needs, could save you the stress and trouble of needlessly pursuing a CHC assessment for your relative if their needs simply aren’t high enough to meet the eligibility criteria for CHC Funding, and in fact, are plainly social needs (and therefore subject to means–testing).
Equally, the distinction is important because, if your relative clearly has a primary health need, but you fail to recognise the difference, they could be lead down the wrong track and end up self-funding their care out of private savings, and even being forced to sell their home, quite unnecessarily!
Joint Packages of Care
CHC includes personal and social care needs which might otherwise be met by Social Services.
In some situations, package of care can be provided jointly by both the NHS and the Local Authority.
If your relative’s care needs are equally funded by the NHS and the Local Authority, then there is an argument to say that their needs are sufficiently high to merit CHC Funding in full. However, your argument is strengthened if the majority of the joint care package is being funded by the NHS. For example, if the NHS are funding 75% and the Local Authority are funding the other 25%. If the majority of care needs are being paid for by the NHS, then arguably that demonstrates an overriding primary health need, and as such, all the funding should be paid for in full by the NHS, and not subjected to means-testing by the Local Authority.
For more information, read our blogs:
Are You Getting A Joint Package Of Care?
What is a joint package of care?
Summary:
Coughlan, The Care Act 2014 and the National Framework combined, draw an important distinction between social needs and healthcare needs.
Remember: It’s all about understanding who pays!
Recognising the difference is vital, as it determines which body is responsible for paying for your relative’s care, or whether they will have to contribute to the cost of their own care.
When you put the maths into practice, knowing the difference could mean paying care home fees of £937* a week / £45,000 a year (*Which.co.uk) or nothing at all!
The difficulty is that often the dividing lines are between social and healthcare needs are blurred, and it is not always obvious which side of the line you fall onto. If in doubt, then you must request an assessment for CHC Funding to ascertain whether your relative has a primary healthcare need.
If the NHS have tried to push your relative down the Local Authority means-tested route or self-funding, despite having obvious healthcare needs, then share your experience with others and explain how you dealt with the situation.
Thanks CTBD for another informative article.
I know when I was working on my late father’s case, this was so important to understand. That invisible line
that puts you either one side or the other in terms of funding. That line that can be “moved” ever so slightly by CHC/CCG at MDT/DST,so your loved one becomes the responsibility of the local authority.
For me (even though we were successful in reclaiming dad’s fees), I still can’t “square” FNC (Funded Nursing Care) in all of this. How can it be that my late father was deemed so poorly that he required a nursing home (not a care home) and was awarded FNC, but they deemed him not to have a primary healthcare need. It never made sense to me and inspired me to fight for justice for dad. The point I make is if a patient is awarded FNC, then I argue they have a PHN.
They are in receipt of nursing 24/7. I urge anyone who is paying for care in a Nursing Home, to challenge and appeal FNC and CHC.
Back to the article, which you gave examples of social care needs. This area is fairly simple to understand and I was expecting to scroll down and read some examples of healthcare needs? Primary Healthcare Need and the Four Key Indicators are undoubtedly the area of greatest concern for those applying for CHC. They need to know what this means. You have some excellent articles on here detailing them, but a refresher with examples of what Nature, Complexity, Intensity and Unpredictability means in terms of a PHN, would complete the article. I was left wondering why you hadn’t?
For me, this is where every challenge/appeal should focus. If relatives are to be successful the emphasis wont be on the woeful/inadequate delays or process. It will be on proving a PHN using those terms. Get that right, with overwhelming evidence to support it and there can be no argument.
Hello ,good article Michelle.
My current dad’s situation is in September I appealed a CHC .
Dad got worse and entered hospital in December.He then was re homed in a Dementia plus care facility ,which suits dad better because a lower occupancy and more staff to meet dad’s needs.
He then was given CHC number 2 and again did not meet the CHC framework,even though his RMN thought her 3 SEVERE needs score should have been acknowledged.
This now has gone to appeal.
In the meantime the CHC for September was successful and a PRIMARY HEALTH NEED was identified on 20/2/20.
Because dad had been re homed from hospital in December I am know awaiting the same dispute and resolution nurse to undertake a second appeal 4 weeks after a Primary Health Need was identified for appeal number 2.
The sting in the tail is because dad moved out of area the new local authority are refusing to pay his FNC on grounds that he should be given CHC on a permanent basis unless new evidence is presented to say otherwise.
We carry on paying and defering the £1,960 weekly fee.
Once this Covid 19 is done and property prices are 50% less dad’s property won’t cover his fees.
Thanks Michelle, however the new LA will not fund dad until the Appeal 2 has been concluded.
If no new evidence is presented by former LA they will fund dad.
Therefore the new LA cannot fund dad unless the old LA present dad as CHC qualified after appeal 2 is successful!
It is very very murky at this end of a Vascular Dementia journey, especially after September to November 30 was funded, on appeal 1 being successful.
Interesting article but it appears that if care needs are as a result of health and the person needs full time care to manage those needs then surely they have an eligibility for CHC especially if they meet the Care Act definition of a disabled person as there should be almost complete overlap with CHC. Also, I understand that the NICE requirements aren’t necessary to meet to get CHC. We are in the middle of three overlapping appeals so any help would be more than welcome before we get involved in a fourth CHC assessment. Also, if health allocation is, say, 82 hours a week and arguably far more, how can that be deemed to be incidental or ancillary?
My son’s first two CHC DSTs have been effectively reworked as desktop exercises on appeal. We have not accepted them. Are they allowed to change the DST without a new MDT? Used poor evidence and changed scores. Also not addressed process maladministration at all. And the last year’s CHC Appeal may be going the same way. We have never agreed to a desktop exercise done by a CCG nurse assessor who has never met our son and without our involvement or speaking to any professionals in the course of compiling the new DST. What a sham. How can they get away with this? After three years we still haven’t had any explanation as to why it took nearly six months to get an outcome letter and why the DST provided after a review showed different scores to what was agreed in jan 2017.
My late father in law had Parkinson’s and was awarded CHC funding in 2013. At the end of 2018 he was reassessed and deemed to not qualify any more despite being in the final stages of Parkinson’s and obviously worse than 5 years previous.
We appealed and whilst waiting for their decision my father in law died in Dec 2019.
I believe the stress of seeing £100,000 of his daughters’ legacy go toward 24hr care (this was waking care in his own home) contributed to his rapid decline.
To add insult to injury our appeal was eventually rejected in Feb 2020 and, although my first reaction was to do another appeal with NHS England, in the current Covid climate I think this would be a waste if time and money.
I just hate the injustice of a system that leaks ridiculous amounts of money from employing a whole tier of pointless middle management and external consultants and then tries to claw back the money from the very people it should be helping.
I was to have a DST to be completed before the covid 19 pandemic, so that will obviously be delayed,l have done my homework but l,realise that you have not gone in depth with the pain and medication section of the DST,l am expecting them to down grade the double incontinence section and most others,but l dont think l have gone over the top with the medication section,this l think will prove a problem to them,some my 31 healthcare needs are rheumatoid arthritis, fibromyalgia osteoarthritis and osteoporosis, as you are aware the pain from these 4 health care problems are overwhelming
I was discharged from the pain clinic by the consultant anesthetist, he wrote a letter to my GP stating he cannot control my chronic unremitting pain, dispite morphine and 9 strong tablets daily,he went on to tell my doctor not to increase my pain medication further as it would be FUTILE, he pointed out that l was not fit enough for the knee replacements l need due to heart failure and other coomorbiditys prevented the other 4 surgerys l needed none unfortunately for this lady can be carried out.
The second section in the medication part of the DST,has been written to my doctor,by the gastroenterologist who told her that the 40 medications daily are having bad side affects,l l had developed chronic diarrhoea daily as its vital,l have to,take this medication ,he told her to put me on diarrhoea medication for the rest of my life.
I am sure you agree that in this one section alone l should if the DST is carried out properly I should score a priority and be entitled to CHC.
I do after all have the evidence in the consultants letters,if they argue about this l will argue that they are a nurse and social worker,who do not have the expertise of the pain consultant, and the gastroenterologist consultant.
It would help as l said to do an article on unremitting pain and medication side affects valerie bradley
It seems that, like the DST itself, the definition of Primary Health Need is a subjective opinion. What is the objective test for a PHN? my son’s CCG admit he is complex, challenging etc and he is in full time care for his health needs and yet he keeps getting turned down for CHC on the basis of no primary health need. He meets the Care Act definition of a disabled person and he is in care to meet and manage those needs. They just keep saying no and now we have three ongoing appeals, ridiculous situation. What is the definition of PHN or is it variable?
Perhaps we should be taking a different set of principles here,if you recieve disability benefits, because of your health needs for example DLA/PIP its perfectly reasonable to point out to the assessors that a full assessment of your health needs,has been carried out already by the DWP.
Your evidence will be how many years have you been recieving this benefit, the fact that you would not be on,these benefits if you did not have health needs,and you would like the assessors to give you good detailed reasons as to why they say you only have social care needs after their assessments, when it’s already been established by the DWP that you have health needs.
You can also factor in these details in any appeals,eg “l wish to point out that your assessors carried out a flawed assessment,l have been in reciept of ( put down the benefit) since ( put down date) and it’s been clearly established that l have health needs,and can your assessors explain why they failed in,their assessment to come to the same conclusion as the DWP.if your carer receives carer allowance to look after you,point out also that they have to provide 35 hours or over of care for you weekly and get ask the carer to write a detailed document of what care is provided for what health needs daily,
If it goes to the IRP/ombudsman include the benefits ect you are on,pointing out your health needs have already been established by the DWP.
Valerie bradley
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Hello, my mum has been funding her own care over a number of years as her health deteriorated the private home care package has increased. After a number of hospital admissions over the years, and attempting for NHS CHC funding which was refused after the last hospital discharge to go home and not be readmitted to a hospital as considered on ‘end of life’ care’. The District Nurses were fast tracking for NHS CHC funding, but she was considered to be improving. So, she is still paying for her own care even though she is in a hospital bed (which we fought for) in her own home, cannot move or do anything for herself, verbal communication is next to non existant with dyphasia, and has for the last 2 years x4 care visits a day, district nurse visits, Mcmillan nurse visits/phone call, plus family support. Should I try to claim NHS CHC funding again? Should I use a solicitor to do this as I’m considering Compass Continuing Health Care as I just feel overwhelmed and at a loss to try and fight again? Advice would be very welcome – thank you.
The NHS
Trys to close every Avenue the claiments can think of to put forward a good case for continuing healthcare,so you have to find evidence they cant play down,go to your local library find every dictionary,like Collins,oxford,look at every definition,in every dictionary, for the words mearly incidental and ancillary,take a photo of each dictionary’s definition,of mearly incidental and ancillary, send by recorded delivery the photos of all the definitions,to the LA and the CCG,and state how ever the line is blurred between LA/NHS care this Coughlan judge’s judgement clearly points out that anything over the mearly,incidental and ancillary line,is to be NHS funded for if you look at the definitions provided in the dictionary you will clearly see it means minor,of no significance,hardly anything and so on.
State that this will be pointed out at the CCG panel as part of the appeal and l will audio record the meeting on my phone,and anything else you need to say.
Valerie bradley
CHC is a legal decision. This is an area that the appeals process does not address. It is outside their competence. The boundaries between social care and CHC were are set in legal precedence in cases such as Coughlan, Leads Ombudsman, Wigan, Pointen, Grogan etc. These are all benchmark cases that draw a consistent line between what is social care an what is CHC. So if your care needs are the same as or worse than any of the individuals in the above court cases then you are entitled to CHC, logical. The only way to fight this is to refuse to pay do not sign forms of consent giving the authorities the right to means test you or allow them to sell your house to pay for care fees it is a fraudulent act. But be sure that you are entitled to CHC firstly and that your care needs are at least like Coughlans. If you are in a care home then the owner has the legal right to evict you for non-payment of fees. If the authorities do not step in to pick up the bill as they should.
The Coughlan case clearly established that where a person`s primary need is for health care, and that is why they are placed in nursing home accommodation, the NHS is responsible for the full cost of the package. Contrary to government guidance social services may only purchase nursing care in very strictly limited circumstances. LEGISLATION DOES NOT PERMIT THE LOCAL AUTHORITIES TO PURCHASE REGISTERED NURSING CARE.( Ref Care Act 2014 Section 22).
What the NHS try to do is get away with only paying for your FNC but leave you to pay for the auxiliary nursing and the accommodation. The NHS has replaced consideration of whether a person`s primary need is for health care with an assumption that the only nursing that a person cannot be forced to pay for is registered nursing. This is a distortion of the true legal position established in Coughlan.
There is no legal distinction between FNC and CHC and thus the health need is deemed to be the Primary Need( Ref Lord Wolf or Lord Justice Charles not sure which! ). FNC is to cover the registered nurse element of care.
I have taken the attitude not to pay the fees and told the County Authorities to take me to court if they want the fees. They won`t because they know they will lose. Bear in mind that the local authority would also have to take the NHS to court as someone is liable for the fees! It would take a class action against the Government to end this CHC fraud once and for all. A Judicial Review(JR) is also a waste of time as the government has tampered with the remedies that a JR court can offer. At most a JR will result in your CHC decision being referred back to the NHS at a significant cost about £50,000 only to repeat the NHS process. The NHS only have to have due regard to the Framework they do not have to obey it. (Ref: Gossip v Surrey Downs CCG, 2019). CHC is a matter of LAW. If we all contributed to a class action against the Government then things would change. Has anyone got a few million to spare for barristers? Is there a Chamber of Barristers that will take this on as it will benefit everyone? Crowdfunding might be an option if the media could help in this regard. Does anyone have powerful connections?
Has anyone found that their CCG has actually changed the domain score (behaviour) twice? Once by showing It on DST as severe (we all agreed priority at DST meeting), then showing it as High on a DST validation tool. Presumably to get it passed as non eligible by the ‘panel”. And the CCG are refusing to answer to it, keep saying they want mediation. They have a duty to respond to a complaint under the complaints process and provide a proper response. They are now breaching their complaints process.
You are quite right david ,l have waited a long time for someone to say this,l stopped paying for my social care nearly 2 years ago ,the LA has still not taken me to court,everyone denied CHC should do this stop worrying about being taken to court,ignore those who ignore you , while you pay they have you over the barrel remember health care is free for those who are I’ll,so why should you be illegally charged for it .
Valerie
Hi Michelle,
I quite see where you are coming from,but l dont own my house and l am on pension credit, what some people dont understand is that people on pension credit,are paying nearly all their disability money and pension in care costs.
My council leave me with my minimum income, and the rest except mobility allowance,is taken in care charges because of council cuts,they resist paying you your disability expenses (mine are over £400 monthly) and l had to spend my mobility allowance on my expenses, which still did not cover my disability expenses.
I recieve both hi rates of disability living allowance,(indefinitely) which the council takes every month except the mobility allowance they are not allowed to take.
My minimum income the council cannot go below is £189 weekly (frozen at this rate for 10 years) and l am being charged £62 weekly taken of the £189 this has reduced me to poverty, unable to partake of well being and replacing things in the home having any holidays ect and so on .
My council has a judicial review coming up by a mother of a disabled young lady,on exactly the position off my self above,in reducing her daughter’s ability to have no well being and being forced into poverty.
This is not a rare avent most council’s are doing it to raise sums for the council,due to government cuts.
I do not know of the position of your friend,but a council can only take you to court,if you fail to pay for your care they cannot stop your direct payments or take any action but court proceedings.
In fact l am annoyed that they are refusing to take me to court,because l would have had no trouble in stating that l should not be paying for social care,in the first place as l should have qualified for CHC five years ago.
It will not be just my word in court proving it,l have several law books from Michael mandelstam,professor luke Clements, the care to be different book and so on,which l can read from in court.
Just to let you all know why l should be NHS funded,l am in palliative care and have 31 long term health problems,double incontinence heart failure insulin diabetic,and so on l am having tests for a rare cancer called ( carcinoid syndrome) l live in my home alone and have 3 carers / PA’s my age is 73.the council will not take me to court because they know they cannot win.they told me this.
So anyone in my situation l still say dont pay.
Hi Michelle,
Yes l understand some people cannot do what l have done(power of attorney) but if people in my position decide to do what l have done excellent,
Hopefully one of us will be sent to prison,unfortunately one of my nurses in palliative care, stated the Local authorities and NHS will just write of the debt because taking very sick people to court will expose all the corruption, that’s been ongoing for years,as you pointed out Victoria’s campaign came to nothing,and everytime a campaign starts it go’s nowhere l have given thought to this,and maybe a little more thought should be imputed to keep this issue in the spotlight,(regularly monthly at all CCG’s peaceful demonstrations ) the CCG’s just wait for the campaigns like Victoria ‘s to go away,so something like l have just suggested l feel would work it will keep it in the public domain.
And we can educate the public as to what’s been going on and spread the word,giving out leaflets ect.
I hope that Admiral Mathias,would consider this,as a good course of action.
Hi Michelle
I am afraid that the IRP that l attended was as corrupt as the CHC,without going into full details , so one of my carers attended with me,gave detailed evidence of my hypo’s and other health problems,she later read the report turning down my appeal,and was horrified at what she read,the panel basically called us both liars,stated l had no hypo’s and that l had lied about having had Bipolar since the age of 16,dispite medical evidence being provided about both these medical conditions.
The health ombudsman,totally ignored all my health conditions to.
Neither the IRP’s are independent and fit for purpose,and that apply,s to the ombudsman service to,the only way to have a fair decision in both decision making area’s is to insure that something like a jury system applies.
Eg members of the public sit on IRP’s and members of disability organisations,become ombudsman decision makers.
In other words remove the means by which the NHS can continue to corrupt the the CHC system.
Since l last commented, l did some more research,l reasoned that nurses should always tell the truth but nurse assessors were pressured to lie.
I went to the RCN site and found that nurses had to obey the nurses code,l wrote to the CCG and pointed out that the nurses employed by them have to abide by the nurses code,and further pointed out that one of the codes stated (you have to OBEY the LAWS of your country) as we all know Coughlan is the law in this country,backed up by Grogan and other cases.
So there now is the possibility of reporting these nurses to their governing bodies.
As l am going to record my next DST l will make certain that l will be informing the nurse Assessor that l will be contacting The RCN if he/she does not follow the Coughlan law of his/her country.
The nurses code is to be found on the RCN site.
Valerie bradley