NHS Continuing Healthcare Funding (or ‘CHC’ for short) is a package of care that is arranged and funded solely by the National Health Service (NHS) and is intended to pay 100% of care fees (including accommodation) for individuals whose care needs are predominantly health needs.
The National Framework for NHS Continuing Healthcare and NHS-funded nursing care (revised October 2018) refers to these needs as a ‘primary health need’.
Read our blog; ‘Primary health need’ made simple – what does it really mean?
Typically, it is more common for the elderly and physically or mentally frail, or those with disabilities to have a primary health need and require long term care. However, the National Framework states that: “Such care is provided to an individual aged 18 or over, to meet health and associated social care needs that have arisen as a result of disability, accident or illness.”
To determine whether your relative has a primary health need and qualifies for CHC Funding, there is a formal assessment process to go through starting with an initial Checklist screening tool.
If your relative scores highly enough at this Checklist stage, they will ordinarily pass on to a Full Assessment, which is dealt with by a Multi – Disciplinary Team using the Decision Support Tool (DST).
The threshold for passing the Checklist stage is set relatively low, so that if your relative does not pass on to a Full Assessment, you can assume that they have little or no needs at this stage. Of course, health needs can fluctuate over time. So, if your relative’s health deteriorates then you can request another Checklist be carried out at any time to see if they then trigger for a Full Assessment.
Visit our website for plenty more free articles and information if you want to learn more about the Checklist and Full Assessment processes, what to expect, traps and pitfalls, and how to succeed. You can also read our book “How To Get The NHS To Pay For Care”.
Remember: CHC Funding is available regardless of wealth or financial means, and no matter where care is delivered. The setting is irrelevant. So, care can be provided in a care facility (eg care or nursing home) or at home.
However, many people are not told about CHC Funding (often described as the ‘NHS’s best kept secret!’), and many families who do ask about it on behalf of a spouse or elderly relative are simply told they won’t get it – and that there’s no point in doing an Assessment.
This is not only completely wrong (because everyone with health needs going into care should be assessed for NHS Continuing Healthcare Funding), but it also puts families off pursuing things further. Sadly, it means that many elderly or vulnerable people, often wrongly sell their homes and everything they own to pay for their care, that should be paid for in full, free of charge, by the NHS.
It is one of the biggest financial scandals in elderly care in the UK.
One of our contributors, Admiral Philip Mathias, has said that: “This is probably one of the biggest financial scandals in the history of the NHS. It also causes untold stress and anxiety to very ill people when they are at their most vulnerable and is often a major distraction to their families, as they battle with CCGs, when they should be focussed on their loved ones who are often approaching end of life. It is an utterly disgraceful situation, given that the purpose of the NHS is to alleviate suffering, not to create it”. You can read his story here: Fighting for NHS funding for my mother was as complex as my work on the nuclear deterrent…
BBC’s Victoria Derbyshire said, “It’s a national scandal – families spending their life savings to pay for care for their severely ill relatives when it should be paid for by the state.”
Read our blog: Exposed: NHS Continuing Healthcare makes headline BBC News
At Care To Be Different we hear from many families who’ve been given incorrect information about CHC Funding by the health and social care authorities. That’s why we’re sharing with you the 10 most outrageous reasons we’ve heard for not being assessed. We’ve also included some useful tips about what to say in response…
1. “You won’t get funding because not many people do.”
No one can possibly make a decision about funding until an Assessment has been done! If your relative needs to go into a care home, or needs full-time care at home, they should be assessed for NHS Continuing Healthcare ideally at the start, but certainly within three months of starting to receive care. If your relative is in hospital, they should be assessed once they’re discharged to their own home, care home or care facility.
2. “We’re not doing an Assessment because you won’t qualify.”
Again, no assessor (or care home nurse) can make a pre-determined judgment about funding without first doing an Assessment. This is an abuse of process.
Your relative should first undergo the screening Checklist Assessment. This determines whether your relative will receive a second Full Assessment using the Decision Support Tool. The NHS assessors should have an open mind and should not prejudge the outcome.
Make sure you’re present at every Assessment and keep a record of what was said.
3. “We’ve already assessed your relative and they don’t qualify.”
Don’t be fobbed off by such comments! Again, you have every right to attend and should be given sufficient notice of the Assessment taking place. If the proposed date or time is not convenient, say so.
You are entitled to attend, and we strongly suggest that you do!
4. “We’re not proceeding if you’ve got a lawyer.”
Assessments are supposed to be conducted fairly and impartially by the NHS’s appointed assessors. They are supposed to be familiar with the Assessment process and have been involved in your relative’s daily care.
The National Framework permits you to have any advocate of your choice to represent you at any stage of the Assessment or appeal process. You can choose to have legal representation if you wish and the NHS cannot object. Some families prefer the comfort of having a professional advocate on their side to fight for their relative’s funding. Professional advocates will spot any abuse of process and ensure that the Assessment (or appeal) is conducted fairly and robustly.
Legal advocates have exactly the same status as any other advocate and therefore should not be discriminated against. If the NHS assessors refuse to proceed with the Assessment because you have legal representation or a professional advocate, you must object and stand your ground. Otherwise, the implication is that the NHS assessors have something to hide. Perhaps they are ill-prepared for the Assessment meeting or have come with a pre-determined negative outcome in mind and don’t want to be challenged.
5. “To get Continuing Care you have to be about to die.”
The eligibility criteria for NHS Continuing Healthcare Funding looks at your ongoing health needs, not how long you have left to live. There’s no limit to the length of time you can receive CHC, and it has nothing to do with how close you are to the end of your life.
6. “There’s no NHS CHC assessor here.”
There may not be an NHS assessor where your relative is based, but that’s irrelevant. The NHS must arrange for someone to be available to carry out the Assessment.
7. “The care you need is too expensive.”
If your relative’s care needs are primarily health needs, it doesn’t matter what their full-time care costs. The NHS has a legal duty to pay for all of it, including the costs of accommodation in a care home.
8. “We’re too busy to assess you.”
It doesn’t matter how busy the local NHS Continuing Healthcare Department is – or how busy any other assessor is – your relative should be properly assessed. As your relative’s representative, you also have the right to appeal any decisions you don’t agree with.
9. “You’ll have to pay for an Assessment.”
Nonsense! You will never have to pay for an NHS Assessment, so don’t part with any money.
….And the most outrageous reason we’ve heard so far:
10. “Continuing Care is only for people who can’t swallow.”
A family called us to say that their relative was desperately ill and had significant healthcare needs but had been told none of that mattered because the elderly person could still swallow. The CHC Assessment looks at a range of health needs, from mobility to symptom control, and from cognition to breathing, including those needs arising from dementia. It is not, and never has been, solely about the ability to swallow.
If you’ve heard excuses like this or may be even something more outrageous, let us know and leave a comment below…
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I have heard so many ‘lies’. CHC don’t do night care, being the best! If you do catch them out, then sue for maladministration. I studied H&SC law just to learn how to fight back. Best investment I ever made!
Well done Steve. It’s a great pity that unless claimants have representation by professionals and/or relatives with tenacity, time and training they’ll struggle. It was dire doing my relative’s case but at every stage, I wondered what happens to those without help and information.
Does the above apply to people in Scottish care homes?
Hi Norma. No – CHC is not applicable in Scotland.
If a judge has ruled the term Nature , Predictability etc , as fatally flawed , why are the nurse assessors still trying to get people to answer them, at a stage 2 meeting,.(going to be a negotiation meeting after partial CHC proposed for one month. out of 11 months) She only awarded High , Medium, and no needs. Which is higher than the Pam Coughlan score sheet, and a comment that she could swallow, so she was not eligible for CHC.
A nurse assessor informed my solicitor’s office, by letter that my mother was not eligible. For Continuing Health Care Retrospective fees , due to her being able to swallow.
Paul, I suggest you ask to see the decision rationale that was sent to the solicitor and go through the reasons written, and ask for explanation from the solicitor and ask about the decision making process. If the reasons for refusal don’t seem to correspond with the scoring levels in the domains, and also if you don’t think they reflect your mother’s overall condition, then ask your solicitor about an appeal.
Help! Has anyone else had this situation? My brother and I went through a 3 hour Checklist assessment with my mother at which the conclusion was that she met the criteria to move forward to the decision support tool stage. Almost 3 months later the CCG have now sent her paperwork (by registered post – no copy to my brother or I) that rewrites history to make the conclusion of that meeting to be that she DIDN’T meet the criteria!! Can they do that? Has anyone else had this?
Yep. On one early occasion I discovered that a nursing sister had amended the documents, and also contacted the then PCT to say they needn’t proceed as relative had been discharged. He hadn’t, and she’d managed to get the dates wrong on the docs which showed she’d made it all up!
The lesson learned ? Always make a copy (by phone if necessary) of anything CHC you sign. Or decline to sign, noting that as the reason, if you are told you can’t photo the document when completed.
Contact the CCG with your reasons, and request a lawful Checklist assessment which you should attend. Direct them to the relevant part of The National Framework on Checklist process in case they’re unaware.
Over a period of 18 months we heard just about every excuse and were presented with an endless supply of misinformation. Everything we were told was untrue.
1.When we mentioned CHC to a social worker she couldn’t repeat the phrase “there’s no point he won’t qualify” often enough.
2.A nurse working for the CCG said CHC didn’t apply to my father because he was being cared for at home. It was only for people in care homes.
3. A CMH nurse, backed up by the CCG, refused to carry out a full assessment after a checklist indicated the need for one. The rationale was that a minor medication change could markedly improve my father’s health and there should not be a full assessment for CHC because he might improve. (None of the health conditions my father had were curable and his GP and consultant had told us that he would continue to deteriorate.)
4.A hospital discharge nurse insisted that CHC only provided a maximum 4 care visits per day.
5. A hospital consultant told us Fast Track was only for people with less than six weeks to live.
6.A community nurse told us that in her 35 years in nursing she had never known anyone get CHC.(This could well be true but was said to deter us from asking any more about CHC.
7. When I asked one nurse/manager about CHC she asked suspiciously whether I worked for the NHS before telling me that what I was asking for (care at home) was not something the NHS did.
8.A hospital consultant insisted my father would have to stay in hospital and wait 28 days before a CHC assessment could start. If we took him home (he was approaching end of life) there would be no CHC assessment.
9. When I asked the CCG about sending information about my fathers care needs I was told this was not needed because the GP could send a list of his diagnoses and they didn’t need anything else.
I don’t recall receiving any accurate information about CHC from a single professional in the NHS or social services.
Everything we were told was wrong, whether because of ignorance, deliberate misinformation, or outright lies.
My feeling was that in the area where my father lived everything possible was done to avoid CHC assessments. If there are no assessments then naturally no-one can be found eligible. I believe avoiding assessments was systemic and had been going on for so long it was simply custom and practice and professionals involved didn’t question it. I found that simply asking about CHC made people immediately defensive and annoyed. They resented what they clearly regarded as “interference” by relatives and regarded me as a nuisance and an irritation.
It is, as so many on this site have said before, a national scandal and in my opinion it is no less than abuse of power by public bodies and the inexcusable financial abuse of vulnerable, and very ill, elderly people.
I also believe the National Framework was introduced to provide the illusion of a fair and lawful approach to long-term healthcare while in reality, and quite deliberately, providing a document and a process that the NHS could hide behind, something that could be subjectively interpreted, however the NHS wishes, in order to protect its budgets. It has also very successfully stopped individuals from going to court and adding to the somewhat inconvenient body of case law that followed and reinforced Coughlan.
Meggie, that’s a horrible list of excuses. I have no doubt when deluged by this level of opposition it is a trained area. If only CCGs and CSUs would invest money in communication and administration of CHC – but as you identify, it’s not in their financial interest to do so. For them to fail to say this honestly and openly is to collude with the Government assertions that the NHS is adequately funded. They have a clear choice, but many seem more keen on keeping their positions than in actually helping address the issue.
Hi Jenny – here is the information you wanted. Kind regards
Thank you for your message, we are pleased to hear that you have been successful with your CHC claim after a long battle with the CCG.
In relation to the interest rate applied, the guidelines state that from 1 April 2015 interest should be applied at the Retail Price Index (RPI) rate. If you would more information on this you can have a look at the NHS Continuing Healthcare Refreshed Redress Guidance, a copy of which can be found at https://eur02.safelinks.protection.outlook.com/?url=https%3A%2F%2Fwww.england.nhs.uk%2Fwp-content%2Fuploads%2F2015%2F04%2Fnhs-cont-hlthcr-rdress-guid-fin.pdf&data=02%7C01%7Candrew.farley%40farleydwek.com%7C7fb05f2c6a7740964e6a08d75d3e2a65%7C262ce588236f45e1bd886a021bd23050%7C0%7C0%7C637080393882978054&sdata=kQoz%2FqxRvJbw6%2FkA5eaLvWmGDOTRTBigO3jJxEAscEY%3D&reserved=0
We have challenged this with many CCGs and also with the Ombudsman on cases which were registered prior to April 2015 as the previous guidelines stated that 8% interest (with a deduction of any retained benefits) was appropriate. Unfortunately, the Ombudsman have confirmed that they feel the RPI rate is reasonable for any claim settled after 1 April 2015, but it may be something to consider if you feel the CCG have delayed significantly in dealing with your claim.
We are also aware that HMRC have requested that CCGs withhold 20% tax on the interest element of their payment. We understand that this is currently being challenged by NHS England but unfortunately, the CCG are entitled to withhold this amount until the challenge by NHS England has been settled. If NHS England are successful in challenging this matter, the CCG will return the money they are withholding to you.
Thank you for the update.
Isn’t that extraordinary, because Court interest at 8% on Personal Injury awards isn’t taxable I believe.
At least it’s only tax on the RPI element, otherwise it would be a further tax on the patient’s own money which the NHS had wrongly caused to be paid, by failing to assess for CHC!
It is in effect payment of interest to reinstate the patient for payments historically made for care due to the wrongdoing of a Public Body. I’m not sure the NHS or HMRC can deny individuals the Equitable remedy of Restitution, however hard The Refreshed Financial Guidance tries!
Thank you for your comment Jenny,
Do you believe the situation will ever change? At a national level the issue is never directly discussed and the media and clueless MPs seem obsessed with “social care” even though it is clear from almost everything that is said and written that they haven’t a clue what “social care” even is.
The long-promised social care Green paper, if it is ever published, will not address the issue of free long-term NHS care. No-one wants to address it because the current system of steering almost all elderly people into social care, regardless of whether they are seriously ill, and making them pay for their own care is the only thing preventing the total collapse of an under-funded NHS and under-funded local authorities. The government currently helps itself unlawfully to the property wealth and savings of the current generation of elderly people. Without this money the current system would collapse as the NHS is not funded well enough to provide long-term health care for all the elderly people who need it. Neither could the social care sector (private care homes) remain viable businesses if they could no longer charge higher rates to self-funders to subsidise the low rates paid by local authorities for council funded patients.
Addressing the scandal is simply not in the governments interests. Anything that could be done to improve matters can only be done by spending more money, ie enough money to fund the healthcare of the elderly and no government has been prepared to do that for more than 20 years.
I completely agree. Nobody changes anything which works well for them, and as you note, the media, MPs and many NHS staff frequently refer to Health Needs as Social Care. Somebody must have started this off, and it works brilliantly to cause confusion and keep people ignorant about CHC.
Also correct; There isn’t enough money to address the issue and it’s been left for years, and long after previous governments had plenty of demographic information warning them about the care crisis down the line.
Unless they look hard and honestly at the whole system – which would mean a massive hike in taxes – it’s unlikely that anything better than a sticking plaster will be applied.