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:
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
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: