Part 1. Explaining The Vital Difference Between Social Needs vs Healthcare Needs

Published 23/03/2020

Please note: This article was published prior to July 2022, and some information may be outdated.

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that they did not meet the eligibility criteria for CHC, or are astounded and outraged when their existing funding is withdrawn.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.

Tagged Categories: CHC eligibility, CHC essentials, CHC funding, NHS Continuing Healthcare

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54 Comments

Valerie bradley December 25, 2020 at 11:10 pm

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

Valerie Bradley September 19, 2020 at 8:11 am

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.

Janet Partridge September 23, 2020 at 11:41 am

Hello Valerie,
I had a DST meeting and like you they skated over the Key Indicators but said that I would not be successful. When I begin to quote from the law i was told that

Michelle wetherall September 20, 2020 at 7:41 pm

Hi Valerie,
I'm so sorry to hear about the disastrous IRP. I was very fortunate to have had a positive outcome at IRP.
The Chairperson of panel was thorough in her questioning and allowed me to speak freely. I spent an inordinate amount of time preparing for the IRP and submitted a lengthy document that was focused on the Key Indicators. This was my priority and armed with the clinical and nursing care evidence that my father needed 24/7, I was able to show that he had a primary health care need at his first MDT/DST, whilst the assessors had not understood this and barely wrote 6 sentences to sum up the KI's. I believe, this is where I gained the respect from the panel, who concluded that my father's case was unsatisfactory and unsound and in their words DID have a primary health care need.
I hear what you are saying about corruption and fair decision making and the Health Ombudsman. I certainly encountered some of it in terms of transparency, ignoring professional judgement, manipulation of facts and indeed the law regarding CHC. I was asked before the start of the IRP what I wanted to focus upon, ie my concerns about impartiality/procedure/mssing documents OR the DST domains and KI's. I chose to base my appeal on the latter, knowing full well, that, even if it was agreed there had been failure to adhere to the regulations, the panel would not overturn the decision, because things hadn't been done properly. I had experienced incompetent assessors and an abysmal process but I couldn't change that. I could change the final outcome. The panel were only going to change the decision if I could prove he had a PHN using the K.I's. I believe this was the best course of action. I would have wasted valuable time arguing about the shambolic process and stress that I had encountered, even though I wanted to tell the panel what I really thought about my own CCG/CHC. I would probably have resorted to some expletives and have got thrown out!
Having done this and been successful, I would urge families to always focus on proving a case using the K.I's and the Domains/DST.
I wish you lots of luck as you battle on!

Valerie Bradley September 11, 2020 at 8:50 am

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.

Michelle wetherall September 16, 2020 at 3:35 pm

Hi Valerie,
Thanks for your reply. I admire your determination as you struggle with your health, but as you quite rightly point out the injustice of CHC will continue until something monumental happens, such as imprisonment of someone like you.
I have no need to continue to spend my time visiting this website, after my late father's case was successfully appealed at IRP, but I do so because I fear CCG's/CHC's will continue to deny nursing care to those in desperate need of it. I try to encourage other families to appeal and not give up the fight and to highlight this stream of funding from the NHS. So many families have never heard of CHC. I certainly, knew nothing about this funding until my father entered hospital in the end stages of Parkinson's disease/dementia.
Good Luck!

Valerie Bradley September 8, 2020 at 9:46 am

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.

Valerie Bradley September 2, 2020 at 6:53 pm

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

Michelle Wetherall September 8, 2020 at 7:42 am

Hello Valerie, I understand your reasons for taking the action you have but encouraging others to do the same is in my opinion just causing even more stress for individuals and families already caught in the trap of CHC. Whilst you have evaded paying for your social care at this moment in time, it may well be that you family when faced with probate will find that a deferred payment/charge has been put upon your estate for the care you have received. I only speak from experience and know of a family friend who had a similar experience.
In terms of not paying for nursing care in a home then I would caution readers to think carefully about non payment when a contract is in place between two parties. The biggest care home providers who dominate this sector have the funds and capacity for litigation.
The only way to avoid paying for care is to have nothing! No home or assets below the threshold allowed. When most people now own their own home, then the reality is, everyone will pay either now or in death!
My hope is that CHC will be reformed to make the system fairer ,so people like my late father are not penalised because they worked hard and saved and then when in need of nursing care in a nursing home his fees were inflated to cover the costs of those funded through social care. The system is so very unfair and subjective and that is why I fought a very long hard battle with my own CCG to prove that my father had a primary health care need. I was eventually successful at IRP with NHS England and recovered all of my late fathers fees.
I would encourage readers if they believe that their care should be funded to read the national framework and articles on this site to fully understand the process and to persevere and appeal all they way to IRP.

Tracy O'Neill September 2, 2020 at 8:54 am

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.

David September 1, 2020 at 12:19 pm

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?

Valerie Bradley February 5, 2024 at 1:37 am

Hi David,
The child poverty action group, might take the case, in fact its been some time since l have looked at their site

Jim September 22, 2020 at 2:38 pm

David - if the LA are seeking to charge and invoice you or your relative for care home fees other than the FNC amount then, presumably, it believes that it has a legal basis for doing so. But what is it? The short answer is that there isn't one. This why, in this instance, a LA will never risk taking anyone to court. As a carer, I was involved in a CHC/FNC case a few years ago. Like you, the individual refused to pay. It was explained that this was because there was no monies legally due. A short legal argument was set out and sent to both the CCG and LA. Both were then put under pressure and invited to respond. I recall that the LA did nothing but the CEO of the CCG ordered a fresh CHC assessment. Unsurprisingly, the individual was found to be eligible. It was claimed that this was due to "new" facts. There were none. But this, of course, was the only escape route that they had. Bizarrely, the National Framework's understanding and reliance on case law - Grogan - could be used to support the argument that the CHC regulations were flawed and that FNC was otiose.

Tracy O'Neill September 2, 2020 at 6:46 am

My son’s CCG Accountable Officer stared that there are “different interpretations” of the ancillary incidental clause, has refused to state what interpretation they use and keeps saying they will only discuss this at mediation. Therefore they are not following the complaints process as they aren’t properly responding to the complaint over it. The AO has also conceded that in three assessments and five DST’s (two have had DST’s redone on appeal) that they haven’t referenced the clause. But they’ve still applied it! It isn’t mentioned in the DSTs therefore they have not taken it into account so they are in breach of the regulations (SR 2996 21 (7)). The LA have confirmed (eventually) that it means “relatively minor”. It’s shocking. No accountability at all.

Michelle wetherall September 1, 2020 at 7:47 pm

Hi David,
I read your comment with interest. My immediate reaction was David & Goliath!
A Group Litigation such as the Backto60 Campaign against the DWP would be a way forward, but
such action would need a Mighty Law firm to take on the NHS! I was hopeful that Retired Rear Admiral
Mathias would be a figure head for such a campaign, but I think we are still awaiting the outcome of his
letter to the Dept of Health.
Health and Social Care is in desperate need of reform, but I'm not optimistic in the present climate, with the UK debt now standing at £2.0 trillion! and the NHS with legal fees of £4.3 bn to settle outstanding claims of clinical negligence.
These figures are mind boggling and I fear that the NHS, as we know it, is unsustainable.
I am very fortunate to be out the other end of the nightmare process of CHC, which took over my life, fighting for funding for my late father. I was successful at IRP, but I fear that in the present economic climate many many families are going to be fighting an unwinnable battle as the NHS/Commisioning Groups tighten their budgets!

Valerie Bradley May 6, 2020 at 4:44 pm

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

Heather Cox May 4, 2020 at 10:34 am

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.

Michelle wetherall May 7, 2020 at 3:43 pm

Hello Heather,
Can you ask a family member to help you with appealing the CHC decision not to fund the Fast Track?
Without knowing more of the details, it's difficult to make any comments, but if the District Nurse has submitted a Fast Track, then it must be commissioned! Take a look at the articles on this site about Fast Track.
I wouldn't give up on it! From the little you have said about your mum's end of life care, it appears that she has every right to CHC. I urge you to read more on this subject.
There are many legal firms/consultants specializing in this field of work. Any costs incurred can not be claimed back if you are successful at appeal. I have had discussions with Andrew Farley & Laura Began of FarleyDwek (this is their forum we are on!) and they were very sympathetic and helpful. In the end I did it myself. If I had to choose a firm I would go with FarleyDwek, purely on the basis of the up to date knowledge they have and share with others on this excellent website!
Good Luck

Ollie Howell May 7, 2020 at 9:10 am

I'm in exactly the same position as you with my sister advanced Alzheimer's, osteoporosis, dysphasia, bed bound no mobility, repositioning so critical by carers, no communication at all everything has to be done for her feeding drinking, doubly in incontinent had a IRP meeting Jan this year and still denied any funding. I'm going to fight this all the way either with the ombudsmen or through the court these people disgust me I know my sister has a primary health needs

Valerie Bradley April 30, 2020 at 6:54 am

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
I

Goldie April 29, 2020 at 2:04 pm

THE QUESTIONS NEED TO BE CHANGED, so that everyone needing CHC meets the criteria. We are all being lied to!

The powers that be are breaking the Law.

Just tell these people that you are not being bullied into paying because your son is eligible.

Will someone get a grip of the CHC situation and stop bullying/harrassing people for payment when quite frankly CHC is necessary for the most vulnerable of people.

Michelle wetherall May 2, 2020 at 8:25 am

Hi Goldie,
Who? Who is going to get a grip on CHC? I'm so pleased this forum is kept going by contributors with such passion as you have. My fear as we move forward in these uncertain times, is work that has taken place by campaigners such as AGE UK, Alzheimer's Society, The Royal College of GP's and various News agencies will fade into the background as Government deals with Brexit and now COVID19.
The Social/Care crisis has not been dealt with by successive Governments for at least the last two decades. Parties and Prime Ministers have made promises that have repeatedly been broken. Boris has said, no one should have to sell their home to pay for dementia care, yet it continues. It is a betrayal from all parties going back years!
The Royal Commission for free care was rejected by the Government in 2000 but adopted in Scotland.......20 years ago!!!! Personal care provided by Scottish councils is free if you're 65 or over, regardless of income, capital assets, or marital/civil status. So all of us are paying through our taxes for this - is that fair? You live just across the border and you are entitled to free care.
A huge industry of both privately owned nursing/care homes and specialist legal advisors now exists because of CHC.
My story and experience of CHC began back in 2016 with my father who had Parkinson's disease and dementia was no longer able to be cared for at home by the family. He was hospitalized and I found myself embroiled in the process of discharge to nursing home. The beginning of CHC was a very steep learning curve about NHS funding that in my opinion is a "double subsidy!", which saw my dad deemed able to pay for care, whilst subsidising the costs of support for those funded by the state. Dad went into a local nursing home, where the father of a friend of mine was also resident. Dad was paying a huge amount, yet my friend's father who had been imprisoned for a number of years and had lost everything and lived on benefits, was being fully funded!
CHC is unfair. This system sees mainly older people battling to get care, on top of battling the devastating effects of dementia/illness and old age. Is this how we want to treat the elderly and vulnerable? Penalize them for working and being self sufficient all their lives. Which is exactly what my dad did/was.
I don't see an end to CHC in the near future and that's why it's crucial for contributors to keep talking and posting their experiences and help. Campaigning has to continue to highlight the crisis in Social Care and the injustice of CHC.
I was successful at appeal with NHS England and was able to recover my late father's nursing home fees.
I took a lot of information from this website and I'm now trying in my own small way to give some help back and urge families to appeal AND CAMPAIGN TO KEEP THIS AT THE TOP OF THE AGENDA, like Admiral MATTHIAS has done recently.

Michelle wetherall April 29, 2020 at 3:58 pm

Hi Tracy,
Only one of the K.I's has to be met!
Keep the pressure on! From what you have described and the knowledge you have about CHC, it's just a question of now presenting all that at an IRP. I'm not sure why you have not reached this stage? With the appeals that have taken place, that have not been concluded satisfactorily by not answering your questions and complaints, then your case should have reached Local Resolution?
Perhaps now is the time to formulate all your complaints into one and submit it to your CCG and your local MP asking why your complaint has not been answered.
With the current situation, I'm guessing it will be a very protracted process but none more so than what you'v already experienced. Make sure you ask for acknowledgement and express your intention to challenge at IRP. You have every right to ask for this. An IRP isn't guaranteed, but you have nothing to lose at this point by pushing for it.
I spent literally hundreds of hours on the whole process. CCG's are hoping that you'll give up.
I urge you not to give up! It's evident you have done so much work already and have the evidence to prove that your son has a PHN. It's going to be hard to overturn a decision based on maladministration. The most you'll probably get is an apology. But with all the evidence you have with regard to your son's health needs, then you have every reason to be optimistic.
I feel the despair and anger it's caused you, but try not to let this overwhelm you. Keep focused and use your knowledge to make that complaint. My advice is simply based on my experience not qualification.
I'm merely trying to give a little help back, after all the help and information I took from this website.
Good Luck.

Michelle wetherall April 17, 2020 at 11:42 am

Hi Steve,
YES! If you can commit the time to research and feel confident in attending an IRP, then you have nothing to loose but everything to gain! We too paid for the services of a solicitor to advise us at the beginning of the process. This specialist firm of lawyers and there are many of them in this field, prepared our first appeal. As a point of interest and to see if my knowledge of the NF was good enough for me to try and do it myself, I prepared my own appeal for comparison. My draft appeal was better! Why? Because I knew my late father's health and 24/7 nursing needs better than anyone else! At this point I dispensed with the solicitors.
I'm not saying that everyone can do this alone, but the way I see it, is you have nothing to loose.
If you haven't all the previous documents regarding your FIL's CHC awards, then I would be now asking your CHC/CCG to provide you with copies of them. This is your starting point in terms of gathering evidence about your FIL's needs. You definitely need the last DST that would have been completed when funding was withdrawn together with the letter of outcome and the rationale behind the decision. I would also be sending a letter to CHC/CCG registering my intention to appeal. Ask for confirmation of the registration and also a date for the appeal submission. In these uncertain times, this could be months ahead. Keep all statements and invoices generated as a result of now paying for your FIL's care. It will be easier to present later, should you be successful.
You will need all the care/nursing notes from those providing the care as well as Doctors notes for the period of review ie: 2018 - 2019.
I'm not saying it's going to be easy. It isn't! You will need to read a huge amount and know the National Framework as well as those administering it. I was fortunate enough to be able to have the time to do this, whereas many relatives haven't. I experienced three/four years fighting for what my father was entitled to and even though he's no longer here, the huge fees that I recovered are now being used by my mum to ensure she has a good quality of life in her old age. Happily she remains independent and would at this stage not qualify for CHC, but I would do it all over again if I thought she qualified!
I firmly believe that understanding the NF and the KEY INDICATORS better than the assessors is your route to success. They rely on relatives being completely bamboozled by the NF. The use their own subjective interpretation of the DST in order to deny eligibility. The assessors are generally nurses! They aren't lawyers or specialists! Don't waste your time and energy moaning about it. The only way to overturn the decision is to prove it!
Good Luck!

Tracy O'Neill April 17, 2020 at 8:14 am

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?

Tracy O'Neill May 2, 2020 at 7:35 am

Good point. I will include that and see what the response is.

Michelle Wetherall April 18, 2020 at 7:38 am

Hello Tracy, I hope you can find the help and advice you need on this website. Have you tried searching the other articles that have a lot more responses about CHC and other benefits such as PIP? I’m guessing that you have ,especially as you are now on to your third appeal for CHC. Without understanding your unique set of circumstances regarding your son, it’s difficult to comment. I have a friend with an adult son with severe learning difficulties who is in “residential” care and his behaviour is extremely challenging and at times is a danger to himself and others. He is not CHC funded. His home does not have a registered nurse present 24/7
I hear what you say about the the Care Act and disability and the grey area that exists in many cases like your own. I agree entirely that a PHN is totally subjective and I would be making the case to prove it using the Key Indicators. If you can prove your son has a PHN using these characteristics then you have a chance of success. I’m terms of your sons challenging behaviour then you would only need to prove through this the Unpredictability element.
I guess that many disabled individuals in “residential” care are denied this funding as they do not require “nursing” care to be present 24/7.......yet they are disabled in terms of the Care Act. Have you listened to the articles by Professor Luke Clements. This may help?
I hope you can get the advice you need. My comments are just that......comments! I have no expertise in CHC just the experience of 3/4 years of battling for funding for my late father who had Parkinson’s disease and dementia.
Good Luck!

Michelle wetherall April 10, 2020 at 10:21 am

Hello Steve,
Please accept my sincere condolences on the loss of your father in law. I lost my dearly loved father in 2018. He had advanced Parkinson's disease and dementia, so I fully understand what your family are going through.
All I would say, is that to have funding withdrawn after a period of 5 years with funding, is grounds enough to appeal to NHS England. During those 5 years you would have had reviews that all concluded that funding should continue! I hope you have held on to this paperwork? I would certainly be gathering all the evidence and applying to NHS England for an IRP (Independent Review Panel) You have nothing to loose. It wouldn't be a waste of money if you are able to commit the time to appeal yourself. I can see that you would be looking at evidence from the period 2018 - Dec 2019, which is totally do-able. You would need to access your FIL care notes from his nursing team/ carer's looking after him at home?Together with any other hospital notes etc. Personally I would be appealing the decision in Feb 2020 and asking your CCG to forward you information to go to IRP. An IRP is not automatic. The evidence you give will be assessed by the Chairman of your IRP and you will then be informed of their decision.
I know we are all feeling like this isn't right thing to be doing, when the NHS is courageously battling Covid, but we have to look to the future and how funding for the NHS and Social Care is funded. The system of CHC we have in place needs reforming or replacing, but if we don't challenge it, then nothing will change! We shouldn't forget either the pledges made by the Government after the election, to fund the NHS and Social Care.....I remember ministers saying " That nobody needing social care will be forced to sell their home to pay for their care!"
Good Luck!

Steve Reynolds April 15, 2020 at 12:52 pm

Thanks Michelle, it's sad that there are just so many stories like this.

Our original solicitor has told us that we're unlikely to win an appeal but if we went ahead it would cost a further £2500 or so. Are you suggesting doing the appeal ourselves?

I hear what you say about changing the system, but given the current climate and the constant games of promises with no delivery that the government plays do you really think we stand a chance?

Janet Partridge April 9, 2020 at 8:09 pm

I agree Michelle. We need to know what wording to use to ensure that we are describing health care needs and not social care needs.

Valerie Bradley April 8, 2020 at 10:24 am

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

Tracy O'Neill September 8, 2020 at 6:50 am

Steve Reynolds April 7, 2020 at 2:35 pm

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.

Tracy O'Neill April 7, 2020 at 2:18 pm

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.

Tracy O'Neill April 7, 2020 at 2:11 pm

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?

Ian Mcclymont April 2, 2020 at 5:26 pm

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.

Ian McClymont March 28, 2020 at 11:01 am

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.

Michelle wetherall March 31, 2020 at 1:59 pm

Hi Ian,
I'm pleased to hear that you have been successful in securing funding as a result of the 1st CHC. I am assuming this was through LRP and not an IRP? An IRP would have taken many months to reach! So funding is in place from that date going forward ie Sept 2019? Any subsequent assessments/appeals shouldn't have any bearing on the outcome of the 1st successful CHC. I'm sure CTBD will correct me if I'm wrong. I would be arguing with your new authority that CHC has been awarded and they should be commissioning this. Concentrate all your efforts on fully funded CHC and not FNC. The paltry amount that is FNC is the "red-herring" in this process.

Michelle Wetherall March 27, 2020 at 8:06 am

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.