The rules and guidance for NHS Continuing Care (CHC) funding are complex, but the funding can be very valuable, as the funding covers the whole of the assessed needs of the person, which generally covers the entire cost of their care in the care home or their own home. It does not cover care in hospital, since this is free at the point of delivery by the NHS in any event.
The funding is granted in two cases, one where the person is in the “final stages of a terminal illness and rapidly declining” or secondly when the person has a “primary health need”.
When someone is known to be dying then the NHS will meet the cost of care, however they need to be actively dying, as all of us are getting closer to death every single day! For some conditions being sure that they are actively dying can be tricky to tell, as they might just be unwell, but not actively in the final stages of dying. It can be easier to know with some cancers, as they have a known pathway, but often with the elderly and their life limiting deteriorating conditions, it can be much harder to tell, until the final few days or hours. As a result, this stream of funding has limited financial value, as funding a few days of care does not cost that much money when compared against funding months or years of care.
The primary healthcare need test will fund care ongoingly, but will be subject to a re-assessment process from time to time to ensure that it remains relevant.
The question of assessment of needs then looks at what are considered to be healthcare needs and what are social care needs. The basic needs of washing, dressing and feeding are considered to be social care, unless they are highly complex, such as when someone has a high risk of choking, then feeding them is more challenging. It is only people who are really very unwell that will pass this primary healthcare need test. I often hear people say things like “they could not stay at home” or “they have X disease, which is a healthcare issue” this is not the test for CHC and is not worth bringing up as part of the assessment process, as they will carry no weight. People who get the funding can either be elderly with the deteriorating conditions of old age or younger with either an acquired brain injury, personality disorder or learning disability.
The NHS look across a range of specific named “domains” or areas of care need, such as continence, nutrition, mobility and behaviour. There are 11 named domains in total and a final one that deals with anything that has not already been covered, but usually most things are dealt with in these first 11 domains. Once these separate areas are considered, the next thing that is looked at is the overall care when taken holistically and defined against the “four key characteristics” of nature, intensity, complexity and unpredictability. In other words, is caring for this person over very intense or very unpredictable for example.
If assessment in the first instance is not successful, then it can be appealed within the CCG, if that is still not successful, then it can be appealed to NHS England and then it can also be appealed to the Parliamentary ombudsman. I generally find that the first two appeals are worthwhile, but I only appeal to the Ombudsman for specific reasons of process or consideration of a specific point, which happens rarely.
The assessment can even be done retrospectively, so even if the person has died, the NHS can still look back and decide that they should have been awarded funding and reimburse the estate for the funds that they should not have had to spend.
If you are going through this and need some help, then please get in touch, I work to support individuals, but mostly families to make sure that the right questions are asked during the assessment, to ensure that they get the best possible opportunities to obtain CHC. The final decision is always that of the CCG responsible for payment, but over the years, I have been successful in lots of cases. The process can be time consuming and distressing, so if you need help, it is worthwhile obtaining support. Good luck.