Many people assume that if you have some savings or own a property, you have to pay for your own care, but this is not always the case.
How reliable is the information you have?
Did you know that the NHS is obliged to pay 100% of your care home fees if you have a ‘Primary Health Need’. This means that your primary need for care is a health need – as opposed to a social care need. This funding is called NHS Continuing Healthcare (or ‘CHC’ for short) and it’s FREE!
However, many of the families who contact us say that they’ve not received any accurate information about this from the health and social care authorities.
Looking back into our archives, we came across this BBC article about NHS Continuing Healthcare entitled, “The little-known fund that can cover complex care costs.” The article is still as relevant today as it was when published on 7th November 2014. Read how more than one million people in the UK have had to sell their homes to pay for their care or a relative’s care. Just think how many more thousands of homes have been sold since then!
The National scandal continues, and nothing seems to have changed since 2014! If anything, from what our readers comment, the NHS are finding even more ways to put families off seeking their entitlement to CHC Funding. Thankfully, BBC’s Victoria Derbyshire Programme delved into this scandal again more recently, and highlighted the hurdles and difficulties that some families have faced whilst battling the NHS to obtain CHC Funding for their relative.
Inordinate delays, disseminating incorrect information, failing to adhere to the National Framework for NHS Continuing Healthcare Funding, missing prescribed timescales, conducting assessments that are neither fair nor robust, incorrectly removing vital CHC Funding at reassessments, and generally bamboozling families engaged in the CHC assessment or appeal process – are just some of the concerns raised by families who contact us. No wonder so many give up and end up paying for their relative’s care unnecessarily!
For more information on some of the recent NHS behaviours that we’ve uncovered, read:
- The 10 Most Outrageous Excuses For Not Having An NHS Continuing Healthcare Assessment
- Watch out for the CCGs’ latest tricks to save costs
- Has your relative been “optimised?” NHS invent more delays to avoid CHC Funding…
- Heard of the ‘Grogan Gap’?
Help Care To Be Different to spread the word and raise public awareness of the availability of CHC Funding nationwide, so others are better informed about how to get funding for their relative.
If you’re new to NHS Continuing Healthcare and the assessment process, here’s a really helpful article to get you started: New to NHS Continuing Healthcare Funding? Here’s a guide to the basics you need to know…
There are two types of nursing care funding:
- Fully-funded NHS care is called NHS Continuing Healthcare. This covers 100% of care fees, including accommodation.
- Funded Nursing Care (FNC) is a weekly allowance (previously £158.16, but recently increased to £165.56 from April 2019) paid by the NHS as a contribution specifically to cover the cost of nursing care (only) provided by a registered nurse in a nursing home facility. FNC is paid tax-free and is not means-tested.
Remember: You should ALWAYS be assessed for NHS Continuing Healthcare BEFORE you’re assessed for FNC.
Have a look at our blog: Have you considered NHS-Funded Nursing Care (FNC)?
Cutting through the confusion
Family representatives are often confused between the fine dividing line over social care vs healthcare. Understanding the difference is critical in terms of who funds the cost of care.
Generally speaking, in simple terms:
- Social Services (your Local Authority) provides social care – which is means-tested – so your relative may be required to contribute to some or all of the cost of their care depending on the level of their assets and savings
- The NHS provides health/nursing care – which is not means-tested -and is free at the point of need
Unfortunately, most families don’t really understand the difference between social needs and healthcare needs, and so, often wrongly assume that their relative’s needs must be healthcare needs (because how else could they survive), when in fact they’re entirely social needs (or even, perhaps, a combination of both).
Although there is no definition of social care needs, it is often thought of as needing help with ‘activities of daily living’ or assisting someone to maintain social interaction and their independence, or preventing them from coming to harm in vulnerable situations. For example, getting help with dressing, mobility, washing, feeding and toileting etc.
If your relative has health needs then make sure that any ‘assessment’, is an assessment to determine eligibility for NHS Continuing Healthcare (ie free care) and conducted in accordance with the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care (revised October 2018), and not a Local Authority financial assessment which is means-tested (and could result in your relative self-funding all of their care).
Beware: Don’t get caught in the middle. Even when healthcare needs may be obvious, the NHS might still try to push you down the Local Authority route for financial assessment just to save funds coming out their budget, and vice versa! If your relative has a Primary Health Need, insist on a CHC assessment!
How to get the NHS to pay for care
Having to choose a care home, negotiate the care ‘system’, understand care fees and figure out what to do next can be very difficult, and many families feel confused and exasperated.
Care To Be Different can help by showing you what should and shouldn’t happen.
How To Get The NHS To Pay For Care is an easy-to-follow, practical e-book (now also available in handy paperback) that helps you cut through the confusion and claim what you’re entitled to.
“We have heard today that my mother-in-law is to receive NHS Continuing Care funding. We could not have done it without your book and website. Thank you so much.” Ian Johnson
“Everything you said would happen did happen.” (further feedback on How To Get The NHS To Pay For Care)
Julia C, “Yesterday I received notification that my CHC application for my relative has been successful. I bought and studied your excellent book before the MDT. Without this, I am sure the outcome would have been different. It was invaluable, many thanks.”
Michelle Wetherall, “Yet another excellent article from CTBD. Thank you! Without this website I would have struggled for information and support during the appeal process for my late father.”
Please help us to spread the word, as much more still needs to be done to help families secure this vital source of NHS funding where it is rightfully due!
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It is still confusing to understand the difference between social care and health/nursing care.My wife was diagnosed with dementia,i was never given an exact diagnosis.This was in 2014,but i was back and forth to the GP for over a year before she was properly assessed.Of course everything has gone downhill since then,and she is now totally dependent on me.She cannot wash,change clothing,eat for herself,and she is doubly incontinent.This means she is totally reliant on me for everything.As i understand it she would not be funded by the NHS,this means i have to care for her 24/7.I do get funding for caring help,but this just covers 6 hours per week.So basically i am entrapped in a situation that i cannot escape from.We do own our own flat,but this is where i live,i could not contemplate them taking that from me.At what point can i say,enough is enough,i cannot,nor do not,want to go on like this?
Hello Charles – Please feel free to call us for an initial chat with one of our experts CHC Advisors. Kind regards
Hello Charles,
I am so sorry to hear about the challenges you face looking after your wife 24/7. It is exhausting and emotionally draining and I admire your courage and hard work. Our own family faced a similar set of circumstances, with my mum caring for my father who had Parkinson’s disease and dementia. At that time my mother was recovering from bowel cancer and both were in their mid 70’s. It all came to a head when my father was admitted to hospital because of a medical problem. This is when I embarked on the process of CHC, eventually reaching an Independent Review with NHS England at which I was successful. It is possible to secure full funding for your wife through NHS Continuing Healthcare if you can prove she has a Primary Health Care need. This website will help you understand the process and the Framework for CHC. I know you will be very busy looking after your wife but the more you can read about this process the more you will understand it. I urge you to read as much about Dementia and it’s complexities. Just because your wife isn’t bed bound doesn’t mean she does not qualify for full funding.
You say you getting funding? How did this come about? Has your wife had a Checklist completed? I would urge you to involve your family/friends for help with your wife and help with beginning the process of CHC.
You have made an excellent start by posting this comment and reaching out for help from the experienced folk who contribute to this forum.
I would urge you to get in contact with your local Age Concern/GP/Community Mental Health Team and make an appointment to visit you and your wife. Insist that a practitioner completes the Checklist.
There are plenty of specialist firms that will offer to help you through this process but please be mindful of the cost involved. Any legal costs that are incurred aren’t refundable should you be successful with CHC.
Good Luck and don’t be afraid to be persistent!
The article is very informative and reliable. Only, in my view, the term ‘primary health need’ is misleading (not CTBD’s fault). The CHC system was not designed to be fair but to exclude as many people as possible, in my experience, plus making the application process a jungle of near-conflicting guidelines (so poorly trained assessing staff does not help). It is worth fighting for, in any case – be prepared for a long haul, appeals etc – so breathe deeply and look after yourself while you are going about it. Best wishes,
Primary Health Need is an NHS construction. The phrase Health Need derives from The Coughlan case and is therefore caselaw, the Primary bit was added when the National Framework was drafted.
I’ve sometimes heard CHC process people change this to “Nursing Need” which comes from nowhere.
Don’t get drawn into using or accepting nonsense jargon.
Hi Barbara, CHC is so subjective and in many cases the real evidence of a patient’s needs can only come from those professionals treating them. In our own case, clinicial evidence from my father’s consultant t neurologist with specialism in Parkinson’s disease was not considered because it was completed 10 days after the MDT/DST. The failure by the assessors to source all evidence prior to these meetings is where CHC/CCG’s are failing families.
It isn’t down to the families to do this work. It is the job of assessors, which you rightly point out are poorly trained. The assessors both CHC and Social Work were not the professional competent persons we had expected. They bluff there way through the DST because they really don’t know how to apply it using the NF. As for the key indicators. They used 3 sentences to describe
Complexity. 1 sentence for intensity and 2 sentences for Unpredictability. In effect 6 sentences to describe my father’s overall actual day to day care needs taken in their totality.
Woefully inadequate and with no consideration to my father’s deteriorating condition that culminated in the Fast Track being commissioned just 26 days later.
Given the fact that it seems that most contributors on this platform speak of incompetent assessors I would urge relatives to do their homework. Knowledge is the Key! No pun intended. Most families haven’t the means to litigate and so arguing about principles and the law (whilst we know it to be true) isn’t going to be as productive as arguing the case using the key indicators.
Having read the pathetic 6 sentences to sum up my father’s nursing needs made me so angry and determined to do the job properly!
I wrote a page on each area and another page to show how these proved my father had a so called Primary Healthcare need.
Assessors have neither the ability or the time to do these assessments properly or if you are cynical are deliberately manipulating DST’s to deny eligibility. Either way, in the majority of cases the evidence is there as well as the maladministration.
Michelle, There isn’t ANY debate going on. There’s just a continuing tide of misinformation being recirculated so that people believe old age = dementia= social care needs for which you must pay. How often is CHC actually mentioned and accurately discussed on any form of media?
This strategy worked well for spreading mis information about the EU. I guess this government will rinse and repeat (and avoid media interviews) over CHC and “The Social Care Crisis”, until we all mindlessly chant the formula above.
The reality is there isn’t the money to provide the service although successive governments have known the demographics for years. Increasing Income tax wouldn’t be a vote winner, so it’s easier to hide entitlement and access to policies, and keep as many health professionals very busy and ignorant about all aspects of CHC, Care Act Assessments, Powers of Attorney and good care standards for the elderly and chronically unwell.
I doubt any cabinet minister will admit to being complicit nor will be rewarded for highlighting what’s going on. The only hope is relentless vigilance, education and persistence. Hold everyone to account at every stage of the process. Always put everything in writing and send by Signed For post. Write to the head of the CCG or CSU if you encounter difficulties, and name everyone you’ve spoken to detailing breaches of The National Framework clearly and simply. Insist on replies. Keep writing until you get a written reply. Avoid getting into their own, self administered and self adjudicating IRP and Appeals system if you can by being really well informed from the start.
In retrospective cases try to establish what procedure your CCG or CSU is using from the outset. Use the NHS Financial Redress Guidance, but know it is not statute and does not “Top Trump” the civil remedy of Restitution when there is admitted or proved wrongdoing by the public body and where the body has been unjustly enriched by their failure to act (eg no CHC assessment, delayed CHC or No Care Act assessment) resulting in financial outlay by the Plaintiff.
CP v NE Lincs is a recent Court of Appeal decision which makes clear costs and expenses ARE recoverable in these circumstances, so bring this to their attention, or to the attention of your legal adviser.
Hi Jenny, Agreed! I have become boring to my family and friends because I am so concerned about what the future holds for us, that I find myself talking about it all the time to anyone that will listen. Trouble is most people don’t want to hear about it. They have busy lives and are naturally concerned with day to day issues of work, family and leisure. They don’t want to contemplate the future until it happens to them. I was one of those people!
I am really hopeful of the work that has been carried out by retired Admiral Matthias, hopeful that it will bring about debate and reforms. I have to be optimistic!
Even though I was successful at IRP and restitution has been made, I am now preparing a lengthy complaint to my CCG about the handling of my case. I don’t intend to let them off the hook, just because they accepted the judgement of NHS ENGLAND without so much as an apology or how they intend to improve the service following the findings.
I’m not sure what else I can do on a personal level to bring about change, other than the support I can offer on this site and of course spread the word. This forum has been excellent for communicating with like minded people, but I do urge readers to think carefully about pursuing specialist help. Any fees incurred through specialist firms can not be reclaimed if successful with appeal.
I have copied my MP into all of my communications about CHC/CCG and my upcoming complaint. To be fair he agreed to meet with me to discuss my concerns and he has lately written to HMRC about the 20% tax withheld by CCG.
I totally agree with your comments about Government and the demographics – same as women born in the 1950’S who are now fighting against the rise in pension age. They knew these women existed! They knew when they were born!
Just like they have known about the global population growth and in particular those aged over 80 years.
It’s too big an issue to tackle without cross party cooperation and honest debate. Don’t get me started on honesty!
I guess in the end CHC will be withdrawn completely. The NHS can’t carry on in it’s present form paying for care and clinical negligence claims etc, etc. I just hope that I don’t become a burden to my family, because that’s what will happen to most people as they become old and develop complex health issues related to age. They will not be able to afford the huge cost of care and will be dependent on the goodwill of family! Many thanks for sharing your thoughts and advice. I look forward to your next piece!
Agreed with your agreed Michelle! However, the point of the Appeal Court case is that legal costs can be recovered where there is a wrongdoing by a public body, and where there has been unjust enrichment.
This applies to CHC cases, and Care Act cases.
My Aunt is in a Nursing home and receives £165 per week FNC.
I am currently awaiting Deputyship and want the best for my Aunt. We will have to sell her house to keep her in the home. She has Dementia, can’t walk and depends on nursing staff for all personal care. She has a catheter permanently. Can you give me more advice please
Hi Karen – she may be eligible for fully funded NHS care. Did a full CHC assessment take place? Call us if you would like to chat this through 0161 979 0430 Kind regards
The BBC is axing the Victoria Derbyshire later this year. This will be a great loss to families.
Her programme challenged the injustice of CHC. She featured Suzanne Morrison’s family and Joyce Bryant in her programme last June. The programme led us to believe that it would continue to highlight the plight of those navigating CHC, but sadly this doesn’t look as if it will happen now. We have to pin our hopes on Admiral Matthias and his campaign.
So less “air time” about the scandalous processes that some CHC/CCG’s use.
After being successful at IRP and being told that my late father had a Primary Healthcare Need at his 1st MDT/DST I am left angry and frustrated at “what could have been”. I have said a few times already, that having the funding restored was a bittersweet victory. Yes, restitution has been made, but no amount of money can put right what my dad and I and the rest of my family had to go through. The stress and anguish can not be compensated.
Had dad been found eligible at the point of the 1st assessment, we could have had a package of care for him at home. He and the rest of the family were denied that opportunity by an unfair and unprofessional/incompetent assessment (just too much to detail here)
Dad always wanted to die at home surrounded by his family but the NHS prevented that.
The family looked into paying for a full package of care at home, but it was an extortionate amount of money and dad sadly ended up in a nursing home, surrounded by people who he didn’t know and whilst it wasn’t all bad, we knew that dad was unhappy and his care wasn’t the best throughout his time there. I don’t think I will ever come to terms with what happened and will forever feel that I couldn’t get what he wanted……..which was to die in the home he had lived in for 62 years.
Families need to know that in securing CHC their relative is entitled to a FULL package of care be it at home or in a Nursing home. They purposely don’t promote this because of the cost, as I’ve just highlighted. A Full Package of care at home will far out weigh the cost of a nursing home place.
One other point that families get caught with is the “red herring” that is FNC – Funded Nursing Care.
This seems to be awarded readily to patients applying for CHC and being denied the FULL package. A sweetener!
I remember my mum saying, bless her, “Oh, isn’t that very nice of the hospital to help us”. Mum is compos mentis, but she was obviously “taken in” by this ploy.
The small contribution of approx £158 a week can only be paid if you are in a nursing home NOT a care home. The cost of most nursing homes now exceed £1,000.00 a week! I would say that most patients in a nursing home are there because they have a significant level of nursing. I know this forum has explored this area in other posts/articles, but families need to be reminded about it and challenge FNC.
As we go forward with the NHS, the Government has to take this issue seriously and reforms need to happen.
There isn’t enough debate going on about how the country is going to fund the NHS with the ageing population and the billions it needs to settle clinical negligence claims.