On The Edge TV interview with Angela Sherman, founder of Care To be Different
In this clip, Angela Sherman talks about the lack of care for her father and the emotional stresses of having a parent in care. Lawyer, Simon Stone, highlights some of the flaws in the National Framework for NHS Continuing Care. The interview was recorded before Angela’s parents died.
Duration: 00:09:43. 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: Is your father on chemotherapy or…?
AS: No, nothing at all.
TC: They are not treating him at all?
TC: They haven’t volunteered to treat him at all?
TC: They have decided to withdraw all treatment or to not give him any treatment to start with? So it wasn’t just that he will probably bleed to death, it wasn’t just that… ‘We can’t be arsed to give surgery’ and ‘We are not going to do chemo and not going to radiation or any other experimental drug therapies of any type’…? How do you feel about that?
AS: Yes, I actually wouldn’t want him to go through that because I don’t think that’s a particularly nice thing to go through. He finds it really difficult to speak because of his Parkinson’s, but he has indicated that he doesn’t want anything like that. I think that he wants a way out, and that perhaps this is it. I don’t know that, but I wouldn’t be surprised if that was the case. But it doesn’t change the fact that there is no information and there’s no support.
TC: And there is no care.
AS: That was really difficult. It felt like a black hole, like he’d been totally abandoned and there was still no funding and I could not believe that at that point he still was having to pay every single penny of his nursing care.
TC: And this is after this overhaul you mentioned of the procedures – [The National Framework]
TC: The reason I ask that is because Brian of Maesteg again has come in: “Question to Simon – which body actioned that overhaul? Who was it who forced the overhaul of those procedures?”
SS: Well it was a combination of judges and the Health Ombudsman saying this is not good enough, something has to change. So the government changed it.
TC: But the judiciary are separate from the government, aren’t they?
SS: It is, but they were deciding cases and the judges were making comments about how this was in disarray, that how could the people within the health service fully understand what they have got to do when the guidelines were so complex and they were varied, so there was a bit of a lottery here – because you might have a different result in Devon to that you would have in Warwickshire. So consequent to that, the NHS put together this National Framework in order to try to pull it together, and when you read the Framework it makes a lot of sense – but the devil is always in the details.
TC: I can hear a ‘but’ coming…
SS: It’s because at the end of the day it’s about people’s interpretation, and people can get it wrong. And when they do, something has to be done about it. But in addition to people getting it wrong, there’s the natural assumption by many of us that perhaps they [NHS assessors] are told, “Well, don’t go right, go left here, because left here means we can hold back a bit of the money.”
TC: OK, alright, so you are waiting for this decision.
AS: The whole of last year this was happening.
TC: This took a year.
AS: And by the end of the year, last Christmas –
TC: Do you mean 2008?
AS: Yes, we finally heard that he would be funded and that they would backdate that to January 2007, which was the date I claimed from, so they’d actually agreed with me completely. But I do feel that if he hadn’t had the cancer ‘label’, we’d still be paying.
TC: They also knew you were prepared to go to court.
AS: I would have gone all the way, yes, I would.
TC: And you told them this?
AS: I think they knew that by that time, they’d had enough letters from me. I am sure they had the measure of me and they knew I wouldn’t give up.
TC: So if somebody – and we’re not giving anybody legal advice here – but if somebody wants to know a bit more about this, they can go to your website.
AS: They can, yes, angelasherman.com [now www.caretobedifferent.co.uk] and there’s some useful tips and information on there and there is also – there are a lot of organisations who provide really good fact sheets and information. Age Concern is one [now AgeUK]. There is a list. But when you are starting something like this, I think if I’d have known how much emotional energy it would take, how much time, how much cost, I don’t know at that time if I would have done it. I think if I’d also known that I was going to have to do the same thing for my father as I had done for my mother, I might have just dug myself a big hole and jumped in it, but what I have learned is that you can only deal with one day at a time. If you look at the whole thing and you think, “Oh, I’ve got to deal with this”, you wouldn’t. You can only take one step at a time. You can only deal with one stage of it at any one time and that’s how you do it. That’s you get through it.
TC: Just like the long march, isn’t it? It’s one step at a time. So, when was this victory then for your father?
AS: For my father it was last December just gone. So it’s now March and I am still waiting for the money.
TC: Why am I surprised!
AS: It’s just how it goes.
TC: I’m not surprised.
AS: But I do have it in writing and I am confident it will arrive, but you know…
TC: But you can’t buy the house back for instance.
AS: No, I can’t buy the house back.
TC: So, in a sense, would that have been your inheritance?
TC: But you weren’t doing it for you. You were doing it for them.
AS: No. Absolutely. It’s their money and anything I won back is their money. It’s not my money. And going back to my costs – my costs in time, lost work because I’m self-employed, expenses, all of that – that’s something I have ‘spent’, and I have chosen to spend that and I could litigate for my costs. Whether I have –
TC: But again, you don’t get this automatically, do you. Everything is like an ‘extra’, everything is another hurdle, another impediment.
AS: And you have to make a decision as to whether it’s worth it. Is it worth me spending another year or two or time of my energy, my time, fighting for my costs or shall I just get on with my life? You have to make a judgement there.
TC: But meanwhile, your parents are still desperately ill. They are still in a nursing home.
AS: And yes, I visit them every other weekend. It’s a really difficult thing. It’s very difficult. But one of the most important things you can do for somebody in a nursing home is to just be there.
TC: Do you think that makes a difference to the way that they are treated in the home?
AS: Yes, I think the more vocal you are, the better, but there is a fine balance and I have had to learn this myself. The people who work in nursing homes have a very difficult job but there are also things that don’t happen that you feel should be happening, and it’s a very fine line to tread between raising issues and –
TC: Upsetting them.
AS: Yes, when actually I don’t really understand what it’s like in their shoes, so it’s a very difficult balance, and I am sure most people with relatives in a care home find the same.
TC: I’ve got a question here from Ray in Teesdale for you Simon: “Is it true that Scotland has free care for the elderly?”
SS: Sorry, Ray, I don’t know because Scottish Law is very different and I think he’d need –
TC: You are a solicitor for England and Wales.
SS: England and Wales has its own set of legal precedents and cases and laws and Scotland is different, so I don’t know what the position is in Scotland, but I wouldn’t be at all surprised.
TC: OK, well you will have to take your own advice Ray. Teesdale’s in England anyway so… It’s quite close to Scotland – and it’s pretty cold up there, isn’t it!
OK, so you were saying…
AS: There must be huge waiting lists for care homes in Scotland!
TC: Well, I’d be tempted to cross the border, I must say. I noticed that they were – this is completely off the subject – but I notice they are going to have a minimum price for alcohol in Scotland, so I was thinking of buying an off-licence just over the border, as it’s going to be very busy. Sorry, completely digressed there.
So, one of the things I wanted to ask you about your parents and your experience of other people with dementia… Actually, let’s have a photograph of your parents. We haven’t had them up on screen.
Can we have image number 2, please? Let’s get them in the room, see if we can get that up here. It’s not coming through. Here we go, these are your parents, presumably on their wedding day.
AS: That was their wedding day, which I believe was 1959. Obviously, I wasn’t there at the time!
TC: I’m glad to hear that.
AS: Looking at that is quite strange, because obviously they were a lot younger. But even in photographs of them when they were older, now they are totally unrecognisable and that’s a really hard thing to see – as a child – watching your parents deteriorate like that.
TC: We’ve got a slightly more recent one, picture number 3, which is you, I believe, with your father. I think this was on your wedding day.
AS: That was on my wedding day. Yes, and he already had Parkinson’s at that point, although you wouldn’t really know.
TC: And we are just going to have the set. We’ll have picture number 1 as well which is a picture of your mother- which you have obviously cropped from a group of people there. Don’t want them on screen, whoever they are!