On The Edge TV interview with Angela Sherman, founder of Care To be Different
In this clip, Angela Sherman talks about the first stages of her parents’ long-term care and outlines some of the difficulties families have understanding the care fees system. The interview was recorded before her parents died.
Duration: 00:08:10. Watch it here. [TV clip © Edge Media] … or read the transcript below:
TC = Theo Chalmers (interviewer), On The Edge
AS = Angela Sherman, founder, Care To Be Different
SS = Simon Stone, lawyer, Kingsley David Solicitors
TC: Good evening, welcome to tonight’s ‘On The Edge’ with me Theo Chalmers. Tonight’s show is once again two hours long and live, so if you have any questions for our guests during the show, text them to 87778 with the word EDGE a space and then your name, location and message, and we will try to pick up on any that really hit the mark. They are all charged at standard rates, so why not get texting.
In tonight’s show, I will be talking with two guests on the subject of how the National Health Service (NHS) is supposed to provide care, free of charge, at the point of need. However, if you are old and especially if you have some savings, the NHS often ‘opts out’ in some cases, apparently illegally.
My two guests are campaigner, Angela Sherman, who has been successful fighting to claw back the tens of thousands of pounds extracted by the NHS from her aged parents for their continuing care and lawyer, Simon Stone. What a show we’ve got tonight! Welcome.
So, Angela, I’ll start with you if I may. Tell me a bit of the history of your parents and how they become to be at the mercy of the NHS.
AS: That’s a good way of describing it. My parents are quite unusual in the sense that most of their adult life has been chequered by illness. They were both diagnosed with Parkinson’s Disease about 25 years ago. That’s a really unusual thing for a husband and wife to both have Parkinsons and to be diagnosed so early, in their mid 50’s, so obviously that’s been something that has progressed over the years.
My mother has had three strokes, she has dementia, she is a frail elderly lady. My father has terminal cancer and he also has dementia, so it’s a really, really difficult situation.
TC: I can see that it is, but if they’ve had Parkinson’s for 25 years presumably have they been in care all this time?
AS: No, they have been in care for the last 4 years.
TC: So they were able to stay at home and look after each other?
AS: Yes, they were at home until 2005 when really things reached a crisis point. My father was looking after my mother, but my father was deteriorating a lot and it reached the point where something had to happen, and I made the decision that they needed to go into nursing care. It was a really difficult decision.
TC: You made the decision? It wasn’t a clinical decision then?
AS: Social Services had been saying they really should consider full time care. They resisted that, but there came a point where they really could not look after themselves anymore.
TC: And you weren’t living there presumably?
TC: Ok, how old were they then, can I ask?
AS: Yes, well they are now late 70s, so when they went into care they were mid 70s.
TC: So alright, they went into care and how did the money aspect of this develop?
AS: Well that’s interesting because I think, like most people, I just assumed if they had savings they would have to pay for their care, I think a lot of people assume that, I don’t where that comes from. It’s perhaps a conditioning that we have. I knew from the fact that they had had to pay for some care at home themselves that Social Services realised they had some savings, and so when they went into a nursing home, immediately they were paying for themselves.
TC: Were they… did they both go into a nursing home together at the same time?
AS: They did.
TC: And instantly they were paying and they were doing that what, from their savings or pensions?
AS: Yes, that was coming out of their savings, and their pension was adding towards that.
TC: So they weren’t having to sell their home or anything?
AS: Not at that point, no, and at that point they were each paying £500 a week.
TC: OK, so that was £1,000 per a week. That’s quite a lot of money, isn’t it? OK and so how did your consciousness, if you like, develop from there – that perhaps they shouldn’t be paying for this? What does the law say? Perhaps I should ask Simon? Simon, you are a lawyer, what does the law say?
SS: Well in essence, it’s about the extent of the health need. If the health need is ‘primary’ then they should be covered by the NHS.
TC: As opposed to?
SS: The local authority.
TC: No sorry, I didn’t mean that, if their health need is primary as opposed to what?
SS: Well it depends on how poorly they are. If they are very poorly it’s a NHS requirement.
TC: And if they are not very poorly?
SS: And if they are not very poorly then it will be covered by care offered by the local authority, and that is means tested.
TC: Right, so if it’s social need, its means tested.
TC: If it’s medical need, it’s free at the point of need.
SS: Yes, that’s right, that’s what the law says. That’s the essence of it. There is a 2006 National Health Act which says in section 1, quite clearly, that it is free unless determined otherwise – and there’s always a possibility. As you can imagine, the cost of health care is huge.
TC: Well if it was £1,000 per week, that’s considerable.
SS: So there has to be an assessment, an understanding of the state and condition of the person, and if the primary need is a health need, then they will be covered by the NHS for free [through NHS Continuing Healthcare]. If it’s not, then the local authority take over – and it’s means tested.
TC: OK so, presumably, you learnt this, did you Angela?
AS: Yes, I knew before because my parents had had some care at home and they’d had to pay for it. I knew that instantly they were being means tested. When you go into a care home, you are supposed to be assessed for nursing care. That doesn’t necessary happen in the way it should.
TC: Let’s talk about your specific cases then, your parents – did it happen? [the assessment]
AS: My mother was assessed for nursing care three months after she went in. That’s ‘normal’.
TC: So whatever happens, you are going to be paying for the first 3 months?
AS: Yes. [NOTE: There is a 12-week ‘property disregard’ that should come into play when you go into care.]
TC: As a kind of hidden tax, if you like?
AS: Well, you could call it that. Yes, and at the point that she was assessed, they decided she wasn’t eligible for any NHS nursing care.
TC: So they were saying her need was social not medical, even though she had had Parkinson’s for 25 years, and she had dementia – and what else did she have?
AS: She’s had three strokes so she was very unwell.
TC: Was she paralysed from these strokes in any way?
AS: She was very much disabled from these strokes, and her cognitive function was affected a lot by it.
TC: But she had no ‘need’ for medical care, despite these?
AS: That’s right.
TC: And this is what the home decided?
AS: The home doesn’t decide it. The NHS goes in and assesses and then shifts the burden onto Social Services.
TC: Which is the local Council…
AS: …which means that you are means tested, so you end up paying. So the assessments themselves are an interesting experience. When my mum was assessed, I didn’t actually know anything about it because when you go into a care home, if you are the adult child, you’ve never been through that process before, you don’t know what to do. If your parents have any kind of savings, doors slam in your face. Social Services will not help you. They will not give you any advice.