On The Edge TV interview with Angela Sherman, founder of Care To be Different
In this clip, Angela Sherman and lawyer, Simon Stone, talk about attitudes within the NHS and in wider society towards elderly people with chronic illness, and how important it is to be vigilant to make sure health assessments are carried out properly. The interview was recorded before Angela’s parents died.
Duration: 00:06:19. 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
[Talking about being turned down for NHS Continuing Healthcare…]
TC; So do they have to give you grounds for ineligibility?
AS: They say his needs are social needs.
TC: So let me just recap again because I am finding it hard to get my head around this really. So he’s had Parkinson’s for over 25 years, he suffers from dementia and he is only in the home for ‘social’ reasons – what because he likes playing chess or…?
AS: They call washing, dressing and all the personal needs, they call that social care. The fact that the reason he needs that is because he is ill is irrelevant in this.
TC: Presumably if he could, he would have dressed himself. I can’t imagine most people, apart from a 15th century monarch, would want to be dressed by somebody else.
AS: I think one of the cultural issues within the NHS is the difference between acute and chronic illness. If you are acutely ill, you go to A&E. You’d be in intensive care, you’d have instant medical input. If you are chronically ill –
TC: That’s ongoing illness?
AS: Ongoing, deterioration, the NHS just isn’t interested.
TC: But surely if it’s ill, it’s ill.
AS: Well yes, it’s this cultural issue that I think is one of the problems, and because he is an old man, he is deteriorating gradually, he has a degenerative disease, it’s a chronic condition, there’s no real urgent nursing input in any given day… I think that’s part of the system that decides he is ineligible.
TC: So after his initial assessment that you were at, they said that we need a proper – what is it they call it?
AS: Another assessment – and that came back as ineligible, so I challenged it. And I think the NHS must have got totally fed up with me because my challenges were always pages long, picking apart –
TC: Well you are a writer, aren’t you, a professional writer. I think it’s worth mentioning that, so presumably you wrote a great epistle about why they were wrong and they should fund your father.
AS: Yes, and you have to pay attention to all the detail. You need to pick apart the reports and assessments because there will be errors throughout them, there will be untruths, there will be errors.
TC: When you say untruths, what do you really mean?
AS: I would say some of the language that is used in the reports – the assessments – is designed to produce a result that requires ‘no funding’. For example, if I think of my mother’s case, she is a woman who is completely immobile, dependant. I mean you could call her paralysed really. She is totally immobile.
TC: Because of the three strokes.
AS: Yes, and the Parkinson’s and everything else and she is very old – older than her years – and an assessment would come back and it would say, “She uses a wheelchair for distance”. You would think –
TC: Oh that means she is running around the house the rest of the time!
TC: When actually she was using it all the time, was she?
AS: No, she only was in a wheelchair when someone might be wheeling her to the loo, so it’s that kind of thing.
TC: But she was incapable of moving otherwise, oh I see, what you are saying is that they worded it like that because –
AS: It kind of gave the impression she was able to just wheel herself around. Other things like for example, one of the assessors came to do one of the early assessments and Mum was in bed, but she was awake and the assessor said hello to her and she kind of murmured a reply. In the assessment it said, “We didn’t want to disturb her because she was asleep.” – and that was their reason for not including her in the assessment. It’s little things like that that you have to be so careful of, because the assessments will be littered with them. Unless you pick them apart, they will just go through.
SS: Can I just interject? What they are looking for here is the ‘hook’ to say the nursing care of the medical care that is needed is simply ‘ancillary’ to the other care – the social care that she needs – and it’s not the primary need. So they are trying to find ways and reasons to say, no she does need a bit of support, she does need a bit of help, but it’s not a primary issue.
TC: Well, I have something here: Malcolm in Lincoln has texted in and said, “The NHS should spend its resources on those who can get better.” What do you think about that?
AS: It’s a point of view. I wonder if somebody very close to him would also – I wonder if he would feel the same about that.
TC: Well, let us know Malcolm.
AS: I wonder if he was in that position, if he would feel the same? Just because somebody is not going to get better, doesn’t mean they are of lesser significance.
SS: That’s an interesting point because we tend to treat the elderly very differently, don’t we, to children. We love the children, we care for them, there are lots of ‘aahhhs’ about children, but when it comes to the old people, it’s not quite that. It’s the old person who is wrinkly and smelly in the corner, whereas these people are children of somebody long gone. They were loved, they were cared for.Now they are loved and cared for by siblings, or by family, yet somehow we depict them – or we treat them in our minds – as something else. We don’t give them the same credence, I don’t think, and as a result of that I think they are poorly dealt with within the system. And somebody needs to champion it and in this case of course, Angela was championing it because it’s her parents.
TC: And of course, you must have been deeply hurt by what was happening.
AS: Yes, terribly, it was a really painful experience and they are my parents, I love them, if I didn’t fight for them I would regret it always.
TC: You would walk over hot coals for them.
AS: I would.
TC: Fair enough.