We are frequently asked questions along the following lines:
My father has been diagnosed with Dementia, which is a health issue, so why is he not entitled to NHS Continuing Healthcare Funding?
Unfortunately, the answer is not that simple! Read on…
The Daily Mail recently ran an extended campaign highlighting the need for more social care funding for Dementia sufferers. Their articles and contributors’ stories told of personal heart-rending accounts; how many thousands of Dementia sufferers have had to pay for their care out of hard earned savings or from the sale of their home, whilst cancer sufferers often have all their treatment paid for, free of charge, by the NHS. Whilst we applaud the Daily Mail for seeking to put pressure on the Government to increase Local Authority budgets to help Dementia sufferers, the apparent bias towards funding for cancer sufferers caused some consternation on both sides of the fence. When it comes to funded care, why should there be any distinction between these two life changing conditions?
Surely, it’s not just about the diagnosis of a condition as to who gets NHS funding and who doesn’t?
We felt that the Daily Mail’s excellent campaign had missed a wonderful opportunity to promote the availability of NHS Continuing Healthcare Funding (CHC) for both cancer and Dementia sufferers, as well as many thousands of other individuals nationwide who are missing out on this available funding for their relative’s care. Read our blog: Daily Mail’s Dementia Campaign – A missed opportunity
We believe that there are many more thousands of people throughout the country, who have been diagnosed with Dementia or other conditions affecting their cognitive impairment, who could and should be entitled to CHC Funded care.
The National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care (2018) explains that if your relative has a ‘primary healthcare need’, then their care needs should be funded in full by the NHS, FREE of charge. NHS Continuing Healthcare Funding is not means-tested and is free of charge at the point of need. That means that all your relative’s healthcare needs and associated social care needs (including accommodation) are paid for FREE by the NHS.
In contrast, social needs are provided by Local Authority (through Social Services) and are means-tested. If your relative has savings or assets (including a home) valued in excess of £23,350 they may be forced to pay for all of their Dementia care needs out of private funds or their lifetime savings. Many will be forced to sell their home to pay for the cost of care.
The distinction between healthcare needs and social care needs is vital, as it is all to do with funding and who pays for the cost of care! Read our blog for more information:
‘Primary health need’ made simple – what does it really mean?
Many relatives of Dementia sufferers have never even heard of NHS Continuing Healthcare Funding. Instead, they are directed straight down the Social Services funding route (or else pay for care privately) without their relative first being considered for eligibility for CHC Funded care – provided by the NHS free of charge!
That’s why it’s essential that your relative is first assessed for CHC before there is any discussion over funding their care needs – whatever their diagnosis.
Families often make the mistake in thinking that Dementia gives an absolute entitlement to CHC Funding. It doesn’t!
The important point to note is that the mere diagnosis of a condition such as Dementia, does not automatically entitle an individual to qualify for NHS Continuing Healthcare Funding. It’s far more complicated than that. It’s about whether your relative has a ‘primary health need’ as set out in the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care (2018). See below:
Paragraph 54: “Determining whether an individual has a primary health need involves looking at the totality of the relevant needs.”
Paragraph 55 states that: “Having a primary health need is not about the reason why an individual requires care or support, nor is it based on their diagnosis; it is about the level and type of their overall actual day-to-day care needs taken in their totality.”
The test of primary health need is set out in paragraph 58: “… a decision of ineligibility for NHS Continuing Healthcare is only possible where, taken as a whole, the nursing or other health services required by the individual:
a) are no more than incidental or ancillary to the provision of accommodation which local authority social services are, or would be but for a person’s means, under a duty to provide; and
b) are not of a nature beyond which a local authority whose primary responsibility it is to provide social services could be expected to provide.”
In simple terms, think of social care needs as things like assistance with activities of daily living, such as washing, feeding, dressing, mobility and toileting, or maintaining independence, social interaction or protecting your relative in vulnerable situations. These social care needs and assistance with daily activities could, of course, resonate with many Dementia sufferers nationwide, and would not ordinarily qualify as a ‘primary health need’ for CHC Funding purposes. That’s because the bar to obtaining CHC Funding is set very high.
CHC is not just about the description or label applied to your relative’s condition or diagnosis, but how difficult, complex, intense or unpredictable it is to manage their overall needs on a day-to-day basis. Consideration must be given to the nature of their condition, what interventions are required to manage and control it, how frequent these interventions are, and how unpredictable their needs are? You have to look at the totality of their needs using the 4 Key Indicators (Nature, Intensity, Complexity and Unpredictability) and take a holistic approach.
Don’t make the common error of just looking at the name or diagnosis given to a particular condition, such as Dementia, in isolation.
Remember, it’s about the overall package of healthcare needs!
For example, an individual with Dementia may have social needs at one end of the spectrum and need some advice, reassurance or help with their mobility and to have someone in attendance to ensure that they don’t wander or fall. They may need reminding to do certain tasks or need gentle encouragement with their dietary food intake or when taking medication. These low-level needs are more likely to be social needs and will not qualify for CHC Funding. Whereas another individual, also suffering with Dementia, may have significantly higher levels of overall need, have significantly impaired cognition, have profound behavioural issues; experience hallucinations and talk to imaginary people or objects, be disorientated as to place and time and be considered a danger to themselves and others. Their poor cognition may make it difficult or even impossible for them to communicate their needs and pain symptoms through speech or otherwise, cause them to be unsteady on their feet, and require hoisting with 2 or more carers for all transfers; be unable to eat or swallow food, leading to weight loss, malnutrition and becoming increasingly fragile. Their care needs may be such that they must have a puréed diet to prevent choking (aspiration) and drink from a beaker; they may be prescribed multiple medications which need to be carefully monitored and administered. Dementia can impact upon their continence if unaware that they the need to go to the toilet, and can therefore lead to developing skin problems, moisture lesions or pressure sores. A Dementia sufferer with this level of need is more likely to have a ‘primary health need’ and be eligible for Continuing Healthcare Funding.
However, all care needs have to be looked at as a whole, and not in isolation. It is the interaction of the care needs across the 12 Care Domains and how they impact on one another that may determine whether your relative is eligible for CHC Funding or not. For more information, read our blog: Understanding the four key indicators
Summary
If you have been told that your relative should automatically be eligible for CHC Funded care just because they have Dementia, then you ought to be very wary.
It’s not just about the diagnosis, description, or name of a condition (eg Dementia) which determines whether an individual is eligible for CHC.
You have to consider the totality of their healthcare needs in conjunction with the 4 Key Indicators and closely examine the nature, intensity, complexity and unpredictability of those needs.
If your relative has Dementia, get an NHS Checklist screening assessment to determine whether their needs are healthcare or social needs.
You must read the National Framework for NHS Continuing Healthcare and NHS-Funded Nursing Care in detail.
For further relevant information around the subject we strongly recommend you read:
New to NHS Continuing Healthcare Funding? Here’s a guide to the basics you need to know…
NHS Continuing Healthcare FAQs
16 useful tips you need to know at the beginning of your CHC journey
Your mum has ‘social’ needs, so she won’t get CHC funding…
 |
 |
I have just had a very interesting and long chat with my father in law’s social worker about why they have refused to carry out a checklist. He has schizophrenia and psychosis which is incurable and can therefore only be managed. His behaviour has resulted in one care home having to transfer him back to hospital and thence to a different care home. Of course this is caused entirely by his illness as he has never been a violent man. I have just succeeded is obtaining two reports from a psychiatrist made whilst he is in care. But his social worker was adamant that the diagnosis plays no part in determining CHC funding. But if she is correct, how does one begin to establish that medical needs are more than incidental to social care, as per Coughlan and the Framework? I think the answer must be that you can’t. If this is the training they have had, then this might be a cautionary tale for other people in the blog.
Diagnosis on its own is not a determination on eligibility. Unfortunately, it just isn’t possible to rely on the knowledge and expertise of those who assess eligibility. Whilst the mantra of the NHS says eligibility is determined on an individual basis, often you can draw comparisons from case law Coughlan, Pointon etc). The onus is definitely on the individual or their representative to evidence the need. This can often be difficult if you have no medical knowledge or understanding. So, as you say, how does someone with no understanding differentiate between nursing and social care needs? In own case, I very successfully used case law to evidence my needs, backed up with medical evidence and knowledge I accrued over years. It still took me four years!
Have tried before to get NHS funding for care for my wife, this was before being discharged from hospital. The ward sister was reluctant to help(she had to raise the documentation) which immediately as I see it influenced the outcome in a detrimental way. We were unsuccessful.
The test of primary health need is set out in paragraph 58: “… a decision of ineligibility for NHS Continuing Healthcare is only possible where, taken as a whole, the nursing or other health services required by the individual:
a) are no more than incidental or ancillary to the provision of accommodation which local authority social services are, or would be but for a person’s means, under a duty to provide; and
b) are not of a nature beyond which a local authority whose primary responsibility it is to provide social services could be expected to provide.”
The most important word here is the “and” in between a) and b). This is otherwise known as the quantity/quality test.
If you satisfy either then you should be entitled to CHC.
I think that this might be a very important point and I had not picked this up before. You have given a lawyer’s interpretation of the test in Coughlan and the Framework and so more fool me because I am one! But what you say ( a bit late in the day to reply to now) is of general importance when reading the Framework and the judgement. My approach to all disputes with authority is to look at every word of important definitions, the statutes and rules which in our case have a bearing on CHC and the relevant parts of the Framework. In this way, I have managed to succeed in almost all disputes I have had, whether commercial or otherwise. The lesson which you give us is to look at the wording carefully and don’t just gloss over it. You can often get the better of your opponent in this way and I suspect that the medical and social work people involved in CHC assessments will be taken by surprise.
It is extremely helpful – may I say sobering to read the experiences of others in similar circumstances.
Thank you to everyone who lodged comments herein…
I have been caring for both of my parents for the past 4 years, and I have noted that CHC procedures are being flouted by all of the hospitals that have dealt with them both during this period. I appear not to be alone.
I think that if anything substantial is to be done regarding any of this, there needs to be a total restructuring of the health care system through a Royal Commission, only then do I think you will see a statutory standard that is uniformed across the UK.
My husband was admitted into a nursing home after I sustained an injury caring for him
Leaving aside the fact that it was I who rang the home and found out contact details for the commissioning body , discovered the language needed, and used it. Ie
Len was admitted as an “urgent emergency referral, for respite care, for assessment in situ with the intention of permanent stay”
I confirmed the bed availability, even though told there were no beds in my chosen facility. I called a taxi. I delivered Len tho the Nursing Home
It is now 12 weeks since admission. Len is settled well although exhibiting all the behaviour alluded to in the CHC assessment.
I have had no contact from Social services at all
I have no idea if Len will get funding although Community Psychiatrist and Nurse, also Admiral Nurse. And the home administration themselves say it is not a problem.
He is in a long term bed, just relax and wait and see!
This is what they all say. Relax! Can you imagine!!
The reason for this sis that the Council are changing computer systems!
I may yet have to start this funding fight although. We have no money, I live in our small house, at the moment the bank is lurching in and out of overdraft…. (Lens DLA has stopped but charges for home carers were continuing!! Until I stopped direct de bit, strange how computer manages some things…….?)
Wish me luck
Need to add to reason for admission. After permanent stay, should read, “due to carer breakdown”
This is important will you please add it in. It may help someone else. Thanks. Catherine.
My Mother-in-Law, who suffers from Alzheimer’s, was committed to an NHS Mental Health Unit under Section 2 of the Mental Health Act, due to her violent behaviour towards family members. After 28 days she was subject to DOLS. I attended a meeting yesterday where I was informed she had been deemed ineligible for NHS continuing healthcare funding and was fit to be discharged into self-funded residential high care. The Discharge Co-ordinator refused to show me a copy of the response from the continuing healthcare team to the initial checklist assessment submitted to them by the Mental Health Unit, on the grounds that I did not have a power of attorney for health, although I had been the family representative for some time. I therefore telephoned the CHC team yesterday and asked them why I hadn’t received a copy of their response to the initial checklist submitted to them. The response I got was that they had no record of ever having received, or responded to an initial checklist submitted by the Mental Health Unit. If that is correct, it must at least be a clear breach of Dept of Health Guidelines and at worst, a criminal offence, for deception. Does anyone have any suggestions?
Dear Michael – thank you for sharing your experience here. Please do not hesitate to contact us if you would like to chat through whether we might be able to assist with an appeal. 0161 979 0430 Kind regards
My Mum has dementia and I as (COP deputy) needed to sell her house to pay care fees – currently running at grand-total of about £180K (over about just over 3 years) ….frankly her finances won’t take her past another 18 months or 2 years…..
I have had therefore to look at the overall situation through financial ”lenses” – so if NHS (ie the UK government) did actually step in and pay for dementia sufferers in the same way as cancer sufferers – how on earth would the UK government budget for this!! …..would have to mean higher tax rates from the wider population – which I would doubt would be very popular….in principle – based on current NHS philosophies to cover dementia sufferers would be fair – but it just wouldn’t add financially up surely – especially in the context of Brexit paralysis and then the hang-over….
I would be extremely interested to see if any organisation has costed dementia being included in the NHS funding purview…..
Brian – the NHS was set up to pay for care from cradle to grave and is designed to be free at the point of delivery. If someone qualifies for CHC then the NHS have to pay. Yes this is a much wider issue here which will no doubt have to be addressed by the government in due course due to the ever increasing aging population. Kind regards
The case law in respect of Grogan is relevant when considering if someone (with dementia) is entitled to CHC. The same applies to Coughlan as someone with a spinal cord injury. Providing you can demonstrate similar primary health led care needs that are complex, intense and unpredictable, then CHC should be provided. Unfortunately, in my experience too many ‘assessors’ do not have enough knowledge of the impairment they are assessing to reach the correct decision.
That’s an entirely succinct summary of the case law , National Framework and the lack of knowledge you’ll likely sadly encounter. Thanks Steve. Be aware of that, and go in very well informed (from here), and with all medical and care notes. Don’t rely upon anyone else to get these for you. It is possible to achieve CHC, but no one makes it easy or fair.
Just to say that I read that these 4 tests are disjunctive and not conjunctive. So if you satisfy any one of them, you will qualify for CHC. Maybe someone could comment on this point.
My wife is now at the end of life stage of a rapid acting dementia. During the last seven month her carefully saved life savings have been eaten up at the rate of £870 per week, as. care home fee’s. The NHS has had no input into her care, I assume that this is because dementia is classed as incurable.
I have no longer any faith in the state of the Nation, is only the love and care of the staff at the home that’s kept me going, and the knowledge that is has is warm and safe.
John – do get in touch if you would like to discuss with us the possibility of seeing whether your wife should in fact be assessed for CHC Funding. 0161 979 0430 Kind regards
Will our family ever be able to claim back the dementia tax we have just paid,mums house and savings?
What happens if you cannot pay? Do not have savings. My husband has frontal lobe dementia. I have cared for him without support for six years. During which time I underwent cancer surgery.
I look after an adult daughter who has a permanent mental illness.
What will happen to my husband? He is currently in a mental hospital under section 3. for assessment. He has been there for three months. I can no longer manage him.
I am so worried by it all.
Rosalind. If you haven’t been contacted for a Care Act Assessment or by a Social Worker then it may be a good idea to contact MIND or AGE UK for some help. Much will depend on whether you have Power of Attorney and how your husband may be further detained under The Mental Health Act, and this is a specialised area.
Briefly though, if there is a further extension of the sectioning and your husband is detained in hospital for treatment the care is paid for by the NHS.
Alternatively If you don’t have savings and he still requires a care home, then Social Services should do a means test once -he has been assessed for CHC, and only if he is not eligible.
Regarding your own situation, are you receiving support from MacMillan if your own illness is ongoing? Further, have you applied for Carer’s Allowance in respect of the care you give your daughter? Are you receiving any help with Council tax or rental payments if you make them?
If your daughter is not working, has she claimed ESA (Employment Support Allowance) or PIP (Personal Independence Payment). Citizens Advice can do a benefit check for you, or have a go using this: https://www.turn2us.org.uk/
Hi thank you for your email I have been fighting for funding for the past three years as my mother had Alzheimer’s and needed to be in care as very abusive and aggressive but not giving up !!
Keep fighting Sheila! Regards
I understand the distress felt by people who have relatives with Dementia. My Husband has Huntington’s Disease and is completely reliant on myself and carers. We have been turned down twice now ( and one appeal). I don’t know what to do next. Are there any people who have Huntington’s who have managed to get funding?
Hi Susan – certainly there are people who have secured funding with Huntington’s. Feel free to contact us if you would like to discuss how we might assist you with this. 0161 979 0430 Kind regards
Find a bed in a specialist unit, and get your relative into it
Tell s/w at end of tether can’t take abuse any longer it’s true isn’t it? Physically and mentally?
It’s like ownership is 9/10 of the battle. Crisis time. You or person are in danger ???
Good luck
The assessment and awarding of CHC has to be taken away from the health and social care organisations who would fund any award, this is a clear and obvious conflict of interest based on finance and not solely on health need. It is time for an independent CHC body to oversee assessments and awards. This is the only way to ensure fairness and that the rules are properly and consistently applied and adhered to. A legal challenge is required to prove the unfairness of the current system which not only breaks the fundamental principles of the national health service, but also of the appalling interpretation of the CHC framework and assessments.
Hi Mark – we completely agree and is part of the overall campaign strategy which we are working on in this area. Kind regards
Mark, I agree with everything you say but unfortunately, we live in the Real World and the NHS is more interested in protecting budgets than meeting someone’s health needs, even if they have a “primary health need” which is far too often the case. Individuals that could afford to launch a legal challenge are unlikely to ever need CHC services, it is those that can’t afford it that do, the NHS knows this, so they will just continue with their flawed, corrupt procedures which are often in direct breach of the national framework.
“A Dementia sufferer with this level of need is more likely to have a ‘primary health need’ and be eligible for Continuing Healthcare Funding.”
The problem is that you state it is more likely, but not certain, even with such severe needs. What is to stop the CCG saying that the interventions are ‘social and personal care’ and not ‘health/nursing services’ just to avoid funding the care? This is what I am currently fighting with. It is their get out of jail free card.
By classing the interventions as ‘social care’ (even though they are administering to some pretty severe health needs), they can claim the primary health need test has failed.
How do I fight against this argument?
Andy I wish you well in your fight for NHS CHF. My sister & I have been fighting mum’s case for 3 years. We instructed solicitor
s last year and are awaiting our 2nd appeal. We used all the info on the Care To Be Different site without success at the 1st appeal. I know how frustrating it can all get. If your loved one is at home or in care, the first step is to get get a ‘Checklist’ done. Hopefully you will then process to the DST (Decision Support Tool). I can’t stress enough the importance of keeping a daily (hourly) diary of care needs. If your loved one is in a care home you must insist that they keep an hourly daily diary of all care needs, behaviour & support. We discovered that the care notes written by nursing staff in the nursing home were inadequate for appeal. They only covered eating, drinking, meds & toileting. When we requested an hour by hour diary, it was very revealing. It showed constant pacing, agitation, hallucinations, moving & lifting furniture, aggravating & causing upset to residents in their personal space & very challenging behaviour. The nurses’ notes did not reveal any of this!
Hi Susan you are very well organised; I would expect we are at a similar stage , just gone through IRP; however, here is a question for you; how many residents at the Nursing home are fully funded? very few :I think it’s 2 or 3 out of 80 residents in our case ,so the odds are not good, in combination with the area you live in (Croydon CCG is the bottom three of funding requests for such a densely populated area)
So it’s a lottery and really a “National Disgrace” as Victoria Derbyshire states on her great programme. What chance have you I am sorry to say.
A decision should be reached on the Totality of Need having regard to Nature Intensity and Complexity -says The National Framework. I’d advise you to look up the definitions of each in the Guidance to the National Framework and in the excellent ebook. Apply these definitions to each of the domains and use their own language against them in the DST; it really does help.
Another area used to slip cases away concerns whether the inputs of care are “Routine”. I think there is an excellent article about this on this site. If you can get your head around this complicated area and then argue it successfully on behalf of your relative, I can guarantee you’ll be better informed than the assessor.
Get reading , and all good wishes. it is possible to win.
Hi Jenny, I searched for an article on this and came across this statement: “The individual should still be assessed as if their routine care is still in place, using that as a base-line. It is the management of their underlying health needs over and above the routine that you need to look at and how they are being managed. That is the key.”
But again we have a subjective area of where do you draw the line on what is routine and what isn’t. For example providing someone with general nourishment is routine, but when does it stop being routine? My mother suffers from disease related malnutrition and requires 15 interventions per 24 hour period just to keep her semi stable. I would argue that is not routine.
I also put a lot of effort into the four characteristics and tried to present it at the MDT. The assessor didn’t want to know.
I would agree on that point Andy. I’d focus on the feeding and nutrition domain requirements and highlight the symptoms which best reflect her level of needs. I’d then say her needs are well beyond Routine care because the Nature of her condition is (name the disease related malnutrition), this results in her needing 15 interventions over every 24 hour period which making her needs Intense. Give examples of weight loss when not under this regime if you have any. If this domain impacts on other domains eg Continence, Behaviour, Psych and Emotional then indicate how it impacts and note the complexity of the issue and need.
Hi Andy, We are in the same situation and at the same stage. We were also wondering about the phrase, “more likely to have a primary health need”. Does anyone have any answers on how to get over this hurdle.