RIP Derek Draper and my admiration to Kate Garraway and best wishes to her and the children and entire family as they process everything and grieve. Kate has been an amazing advocate for her husband, her family, and patients, carers and families with similar challenges.
This is going to be a long one but I hope that it is useful to some people who are on this thread, or who view it later.
@AnnieMaeve, and @ others who have posted about friends and relatives not getting the long term care they need:
My DM is also very ill and requires full time nursing care, paid for from her savings at a cost of £5,500 per month.
It sounds as though some of the people with complex needs being described on this thread should be looking into something called NHS Continuing Healthcare (CHC). Once assessed as eligible, then it covers not only all actual nursing care but also all other care required to meet the person's needs as assessed. See here for some information (which is meant to be for solicitors working in this area of practice, and therefore unless you are one, I recommend that you do take professional advice):
https://communities.lawsociety.org.uk/may-2022/back-to-basics-nhs-continuing-healthcare-eligibility/6002314.article
Although many many people with care needs resulting from medical conditions will not meet the actual criteria (in the legislation), it is never-the-less a national scandal, in my opinion, that many people, including those with severe complications of Covid or severe long Covid, as well as degenerative neurological conditions, stroke, etc. etc., and who require extensive nursing and other care specifically because of their illness, have not heard of it, have been fobbed off when enquiring about it, have been erroneously discouraged from applying or told incorrectly that they are not eligible when they might be. And hence they do not have it and are struggling, having their assets unnecessarily drained, or both.
While some healthcare professionals and some social workers are knowledgeable and/or supportive on the matter, and so it would be wise to ASK these people involved with you to ascertain whether they are, unforunately at the same time people often are NOT told or helped to apply for it by healthcare professionals and some local councils and social workers put them into the social care route long term which is means tested and that's it, rather than encouraging and assisting them to go down CHC NHS route. Although it is a complex situation with councils and their responsibilities and the reasons not black and white.
My understanding is that it can be a difficult process to get, can take a long time and require appeal(s), and takes a lot of fortitude, and sometimes the claims are only paid out after someone has died (into their estate, sometimes considerable sums). And quite often the 'gatekeeping' step in order to be "allowed" to apply for it (and which if you read the legislation, isn't implemented correctly and is questionable as a concept) is problematic itself.
There are charities who can assist, and some charities are also (or instead) able to signpost to particular specialist solicitors for their client (patient) group, who can give initial free advice and who have been assessed as being legitimate, ethical, providing a service suitable for their client/patient group, and charging reasonable fees for further assistance with applying for or appealing for CHC. In my view, the cost of care is so high that this could be money well spent.
There are also things called Care Annuities which could be appropriate for some people in some circumstances and I would recommend anyone with assets being drained to speak to an Independent Financial Advisor, preferably one with SOLLA accreditation:
https://societyoflaterlifeadvisers.co.uk/
In fact, this could also be a useful step for someone looking at claiming CHC even without much or any assets, and don't forget the family home, insurance policies, and private and state pension accrual, it all counts, you do not have to be even 'well off' let alone rich to benefit from an initial consultation which is often free of charge. Also, you don't have to be IN later life to speak to them, as they will tell you what their specialisms are, which can include care fee planning (for people of any age, immediate or future), general retirement planning, other investment, pension and insurance planning, looking at the whole family if desired. Some SOLLA trained IFAs, and IFAs more generally, work only with clients with specific minimum income or asset levels, or at specific life stages, but many don't. Make some notes and check that they ask you all the right questions, including about CHC and grants and personal wheelchair budgets and so on, in their initial consultation with you, and then choose someone who will be right for your situation.
Disclaimer: I am not connected through paid work or volunteering to any commercial company or charity that deals with CHC directly, nor have I ever been to my knowledge. I am connected to one charity that signposts to a third party for CHC legal help, due to a personal connection with that charity and volunteering for it in an unrelated capacity. I am not a lawyer, an IFA or a registered healthcare professional either nor do I work for any of the above. I am a client of several of the above specialisms.