When are the Government going to fix CHC?

Published 03/07/2020

Please note: This article was published prior to July 2022, and some information may be outdated.

Boris Johnson said in his Economy Briefing on 30^th June 2020:

“We won’t wait to fix the problems of social care [which] every government has flunked for the last 30 years. We will end the injustice that some people have to sell their homes to finance the cost of their care whilst others don’t…”

For many years now, Care To Be Different has been helping individuals and their families through the tortuous NHS Continuing Healthcare Funding (CHC) process. CHC is not means-tested, is free at the point of need, and is delivered by the NHS to individuals with a ‘primary healthcare need’ ie who have intense, complex or unpredictable healthcare needs beyond which a local authority can lawfully provide. CHC is provided regardless of wealth or the setting where the care takes place – be it a care or nursing home, your own home, other care facility or a hospice.

CHC was originally provided by individual Strategic Health Authorities, each applying their own assessment criteria. This led to a great deal of subjectivity and inconsistency throughout the country as to who might receive CHC – free care from the NHS – and who would have to pay for it from their own funds (‘self-funders’). The nationwide disparity has been described as a ‘postcode lottery’, and depending on where you lived, could dictate whether you were more or less likely to be awarded CHC. This proved grossly unfair to those deserving of CHC, who were being denied funding by a flawed system. So, two individuals with similar needs may experience totally different outcomes. One may receive a CHC package and have all their healthcare and social needs paid for in full by the NHS; the other might be forced to pay for their care privately and end up selling their home.

That changed in 2007 with the introduction of the NHS National Framework. The intention was to create a uniform, fair and consistent assessment and appeal process throughout the country with clear nationwide guidelines. The National Framework has since evolved over the years with several revisions, recently culminating in the latest version – The National Framework for NHS Continuing Healthcare Funding and NHS-funded Nursing Care – which came into force on 1^st October 2018. This latest edition is an improvement and addresses some of the previous omissions, but it is not yet the perfect article. The assessment process remains subjective and that means that there is still the opportunity for inconsistency and errors in its application and the outcome as to eligibility for CHC Funding. Many families feel that the process is slanted in favour of the NHS and it is not user-friendly.

The National Framework principally deals with the issues surrounding NHS CHC Funded care which also includes social care funding, so there is, of course, interaction with local authority funding, mention of joint packages of care (funded jointly by both the NHS and local authority) and now inclusion of the Care Act 2014 (which deals with social care funding issues and assessments).

If you are ineligible for CHC Funding, then you should pass over to the social services to see if you are eligible for alternative funding instead from the local authority. The difference is that local authority funding is means-tested, and so, depending the level of your assets and savings, you could well end up paying for your own care if you are over the threshold (£23,350).

For more information about what constitutes healthcare needs and social care needs, read our blogs:

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

Part 2 – Explaining The Vital Difference Between Social Needs vs Healthcare Needs

Care provided in your own home or in a care home can be very expensive, often costing on average around £6,000 a month / £72,000 a year and upwards – depending on your locality and facilities offered by the care home. Care homes will demand regular payment as part of the contractual arrangement. If self-funding, care fees can mount up pretty quickly and the family assets – usually the home – is often sold to pay for a relative’s care.

The Prime Minister talks of boosting NHS funds and creating 40 more new hospitals, which is both welcome and much needed. He talks about improving social care and also not having to sell your home to pay for social care – also most welcome!

But, he does not specifically mention NHS Continuing Healthcare! At the heart of the National Framework (and supported by Section 9 of the Care Act 2014) is the core principle that eligibility for CHC should be considered before local authority funding or private funding are ever mentioned. The first discussion should always be about healthcare needs ie CHC, and not how you are going to pay for your care! Unfortunately, that is not always the case, and quite often, CHC is not even on the agenda.

Transparency: The PM doesn’t deal with the NHS’s past failings to openly tell the public about the availability of NHS Continuing Healthcare Funding, or of its failure to freely volunteer an initial assessment to at least ascertain whether an individual could be eligible for CHC.

The outcome of a successful CHC application should result in all your assessed healthcare needs being paid in full, by the NHS, free of charge. No need to sell your home; no need to contribute to your healthcare needs! You’ve saved all your life and paid taxes, so that at the point in your life when you most need care, you should be entitled to receive it free of charge.

Sadly, however, CHC rarely features on the public agenda. Unless you happen to come across it by chance, most families looking into care will never have even heard of it, and instead will be pushed down the route of self-funding care and most likely having to sell their home. CHC is has been described as the ‘NHS’s best kept secret’. Care To Be Different strives to promote CHC and offers families lots of free resources and information on its website to help you navigate the CHC system.

Whilst the NHS have excelled in coping with coronavirus, the Prime Minister has not yet addressed the misery that thousands of families have suffered as a result of inadequate and flawed NHS CHC assessments – where individuals justly deserving of free NHS care packages to meet their healthcare needs – have been turned down for CHC Funding and instead have been forced to sell their home to pay for their care. Remember: CHC is ‘free at the point of delivery’ (paragraph 180 of the National Framework). Nor has the PM yet sought to address the assessment and appeal’s process which still remains flawed and far too subjective, frequently leading to incorrect outcomes and decisions to reject or withdraw existing CHC Funding – which are fundamentally wrong – heaping distress and financial misery on families. As an example, read Admiral Mathias’ story:

‘Fighting for NHS funding for my mother was as complex as my work on the nuclear deterrent…’

We wonder how many thousands of homes have been sold needlessly over the years to pay for care, which should have been funded by the NHS? Had CHC been awarded, then this stressful and anxious situation could have been avoided. Read our blog: Is the National Framework still working effectively?

Hopefully, the Prime Minister will address these funding issues when the Government reviews social care funding.

Paying care home fees or paying for full-time care at home? You could be entitled to NHS Continuing Healthcare.

What contribution do I have to make towards my care costs, and when?

New to NHS Continuing Healthcare Funding? Here’s a guide to the basics you need to know…

Leave a comment below and let us know what you think the Government ought to be doing to promote the awareness and availability of CHC Funding…

Tagged Categories: CHC funding, NHS Continuing Healthcare

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14 Comments

PAULINE HARDINGES July 17, 2020 at 10:24 am

The current system is a complete minefield for obtaining CHC. I feel all the shouting I have been doing for the last 12 years seems to have fallen on deaf ears. The way forward is to have a complete overhaul from the bottom up. One would assume that it would be relatively simple to draw a line between a social need and a nursing need, after all there is a vast difference between helping with and doing for. Also some of these assessors need a lesson in assessing met needs. A need is still a need whether the need is being met or not. The NHS waste so much money doing retrospective reviews when had they done the assessment correctly in the first place it would have saved money.

Sharon September 3, 2021 at 3:25 pm

Couldn’t agree more.
Chc & social care assessors work hand n hand and work with budgets.
Your comments are absolutely correct especially difference between help or need! My mum was a danger to herself and others for health and safety but they still made me go through 2 appeals to finally get it, then they would agree to first 24 weeks, it was horrendous task over 2.5 yrs in total fighting this ridiculous system

Jacqueline Day July 15, 2020 at 12:10 pm

I have read the above comments with empathy and interest. I have been trying to research CHC funding since January and have bought the Care to Be Different book "How to get the NHS to pay for Continuing Health Care, together with the "Seven common Mistakes" that people make in their attempts to get to a panel assessment. I managed considerable research whilst on respite, but this has trailed off due to highly increased care responsibilties.I tried to research the National Framework, and have kept reading the Caretobedifferent site.

We have recently undergone the Checklist for my husband, and his needs outcome were mostly "A" which is severe
.
My husband has also been assessed by the Local Authority to establish his needs, and a package has been put in place. At the time of this assessment I asked for it to be noted on his file that we intended to go for CHC funding.I believe that this was done.

But the local authority are requiring a Financial Assessment for the package just put in place. They have sent the Financial Assessment form as a preliminary. It is very detailed.

I understand that withthe Checklist now successfully completed the next stage is for a nurse assessor to examine the needs in more detail using the Decision Support Tool before advancing to the Multi Disciplinary Team panel.
Is this correct protocol please. I am trying to reach Farley Dwek for their take on these stages of action.

My general comment and question is this:

Has the requirement for the a CHC assessment coming BEFORE the LA input and funded package is put in place, been SUPERCEDED IN ANY (LEGAL) way , or even by the overriding complications of the pandemic being OFFICIALLY accepted as appropriate in the interim?

I am currently trying to ask Farley Dwek, specialist solicitors, for a comment on this general question.

I realise that there will be a long, long queue, the length of which depends on the proactive input of the relevant local authority.

Hope there will be a useful response to this dilemma. I have been given one week to complete the Financial Assessment form, but I want to be able to tell the LA that they have got it the wrong way round?!

Thank you so very much for the enormous amounts of helpful info I now have in my files. I need it in my head too, of course.
Jacqueline

Rosemary Lawrence August 24, 2020 at 4:15 pm

I’m in the same boat as you, having had 3 CHC assessments..
My husband needs full time 24 hr nursing care,
He’s completely disabled, cannot do anything for himself, he has advanced Parkinson’s.
I’ve cared for him 10 yrs, I’m to old and sick myself to continue, but my husband is means tested
And they will even take our funeral funds

Michelle wetherall July 16, 2020 at 7:27 pm

Hi Jacqueline,
Don't complete the Financial Assessment!
You have started the process of CHC, with the completion of the Checklist. Have you had confirmation that your husband was eligible for a full assessment using the Decision Support Tool? If not then you need to know. This will give you the information you need to respond to the local authority and inform them that until the DST/MDT has taken place, then they can not know if your husband is entitled to full CHC Funding. As such your husband or you should NOT AGREE to disclose financial details. There's a wealth of information on this website to help you understand the process.
Best Wishes!

Steve Moxon July 16, 2020 at 6:01 pm

Well, I don't know but surely any financial assessment always follows the decision on whether or not to award CHC (or FNC): it would no make sense the other way and would risk being a serious imposition: if CHC were to be awarded then a financial assessment would be not only irrelevant but inappropriate; a clear abuse in being a serious invasion of what of all things should be private. You could simply ignore the request, and if they repeat it or hassle you, politely decline to complete anything until the decision on CHC, and set them straight on what you understand is the procedure, and that you see no good reason to deviate from this, and, moreover, good reasons both of logic and privacy not to comply with the request.

Michelle wetherall July 13, 2020 at 12:19 pm

Hi Steve,
Great response and you've raised my hopes for progress! It's what we all want, a fairer system that doesn't disadvantage those that have worked and paid into a system and then find themselves paying to subsidize
others within a care setting, who for whatever reason do not pay!
Welcome news that your mum isn't being reviewed. I wouldn't rest on your laurels though! Be watchful and prepared for the next round!

Rosemary Lawrence August 12, 2020 at 12:38 pm

My husband has advanced Parkinson’s
And been told he needs 24 hr nursing care now
We live in an extra care apartment for 1 yr where he gets social care, but his needs are beyond this now, and the SS want him to go into permanent care, but getting CHC has proved futile before,
And the charges for full time nursing care are astronomical... I’m no longer able to cope with his day to day needs, as I have Heart failure...and kidney failure. ...
he has lost the power of speech, and only way of getting an answer to a ? Is to write it down and ask yes or no!
But he will not voluntarily go into 24 hr care,
I’m at a loss, as to know where and how I can cope
The SS mentioned TFC
No idea what it means, as I cannot pay all the fee a care home required without being homeless myself....
It does not pay to work all you’re life to get pensions... to have them clawed of you for you’re
Retirement care
Feeling so ill with worry

Steve Moxon July 7, 2020 at 2:04 pm

I'm more optimistic than Michelle on this. The ground has totally changed. Fiscal rules are completely out of the window. The Government regularly crows about its open chequebook for the NHS, and there is no stopping the national debt, already at £2trillion, rising by several hundred billion £ more with the economy-wrecking measures in over-reaction re younger, healthy people, stopping them going to work; so the £billions needed to sort CHC are dwarfed. COVID-19 has intensely focused attention on healthcare spending and especially on care homes, given the impact of the virus here, so it's politically the right time for the Government to grasp the nettle.
What I think they will do is to stop the taxpayer paying care home residents both their CHC costs AND their pensions. The average pension income of a care home resident comprises the state pension + any private pension + any transferred pension from a decease spouse. On average this surely must amount to something like £300 or £350 per week. That's about half of what the NHS pays out in CHC. If all residents forfeited their current income, then this would hugely offset the cost to taxpayers of abolishing all self-funding.
The other meassure that should be implemented is exemption of capital sufficient for everyone to be able to pass in to offspring a modest family home -- say a threshold of equity value of £200,000. That's the value of an average home in an ordinary part of England. If you live in a place where the house prices are truly crazy (the south-east), or you live in a relative mansion, then the family home won't be exempt, but there'll nevertheless be the same equity exemption.
This combination of measures seems the fairest way forward. It's still a big imposition on taxpayers, but not to the unacceptable extent as would be the case if there were a blanket exemption of the family home. There has to be a major element of equitability. Many taxpayers have no assets, so can't be expected to pay to subsidise inter-generational transfer of assets of those much better off than they are. It's a big balancing act, but there is no better time than this for the Government to try to pull it off.

Michelle wetherall July 7, 2020 at 8:01 pm

Hi Steve,
You've raised some very good points! It's really good to read other's ideas and opinions.
The country will take many years to recover (if ever!) from the fall out of COVID & BREXIT but we
shouldn't allow Government to use this to dodge dealing with Social Care/Dementia and CHC.
The last two decades have been filled with political promises, with successive Governments failing to
take action. We've had a Royal Commission, but its recommendation for free long-term personal care was rejected in 1998. Tony Blair, Alan Johnson, Burnham, Theresa May, Blunkett, to name but a few, have all failed in an attempt to improve our care system. So I guess it's not surprising that "I'm less optimistic!"
It's hugely complicated and there is never going to be a solution that everyone is going to be happy with, but we have to have a fairer system that ends the "double subsidy", where care homes charge a higher rate for private residents than they charge councils to look after residents who have no savings, despite both cases receiving identical care and facilities. This happened in my late father's case. My friend's father was in the same nursing home and sat at the same dining table, had an identical room, same food and care, yet he didn't pay for it, because he had no assets, a result of his criminal past. His family had not been subjected to the horrendous process of CHC . It's simply not fair! I know I sound bitter, but my dad was an honest, law abiding, hardworking man, who never claimed state benefits, yet when he needed care at the very end of his life, because of the impact of the final stages of Parkinson's disease/dementia, he was made to pay for it, even though he had paid into the system right up to his retirement. Today is the 2nd anniversary of his death, so there's probably a bit of emotion in here, that I wouldn't necessarily do!
I could not let this happen and worked tirelessly to recover his fees and eventually did so at IRP. Money that is now being spent on social care for my mother.
We should not in these COVID times, forget that there remains a dementia care crisis and Government MUST commit to long-term social care reform and find a way to fund it through either pension contributions, insurance scheme or tax. So I welcome your comments and others! Who knows, maybe someone on this site has the solution! Now wouldn't that be wonderful!
Good Luck with your mum's review!

Michelle wetherall July 5, 2020 at 8:03 am

Hopefully? It's doubtful! This has been going on for decades. So much has been written and said by politicians, campaigners and the national press over the years but successive Governments have been afraid to deal with this because it's such a huge problem that requires radical change to how society views the elderly, ill and disabled and how we look after them.
Boris has promised to build 40 new hospitals. Jolly good Boris, but these will be filled in no time with the over 85's which is forecast to double by 2030. Most of these will be suffering from dementia, Parkinson's and other age related disease.
Is this the answer? I know first hand that my late father spent almost 12 weeks in a hospital setting with Parkinson's disease and dementia. He was bed blocking! This familiar scenario plays out across the country and costs the NHS millions, because they are unable to discharge patients on time.
It is a crisis that is spiralling out of control! It's estimated that the NHS budget would need to be increased in excess of £88 billion over the next 50 years to cover the rising costs to cope with the ageing population.
Families will have to continue to face the injustice of CHC as local authorities will have even more restricted budgets to look after our elderly following COVID and not forgetting BREXIT!
There isn't a simple solution to this complicated system or indeed health & social care, that impacts all of us, so I urge everyone to insist that Boris keeps his promise to stop the injustice of some paying for care and others not.
In the end, I guess all of us will be paying some kind of tax throughout our working lives for a care in old age, but at least that will be fair for everyone and end the nightmare system of CHC and its Rules on Complexity, Severity, and Unpredicatability!