NHS Continuing Healthcare interview – TV clip 7

NHS Continuing Healthcare interview – TV clip 7

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 the principles of the NHS, the new Lasting Powers of Attorney and the lack of care in Angela’s father’s cancer diagnosis. The interview was recorded before her parents died.

Duration: 00:09:27. Watch it here. [TV clip © Edge Media]'On The Edge' TV interview about NHS Continuing Healthcare

… 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: Welcome back… I’m going to read out a couple of texts from Brian from Maesteg again: “It’s been a long time since the inception of the NHS. A lot of variables have changed since then. Perhaps an overhaul is due.” Simon do you think so?

SS: Well there was one in 2006. The Act there was totally repealed and replaced the other legislation, so far as England is concerned, but the issue is one of funding. If you speak to anyone in the NHS they say, “Well, great, we will provide you with what you want, but we need more money to do it.”

TC: In the break there we were chatting and you mentioned about this power of attorney and I think this is a really important point, so I’d like you to go over that again if you would.

SS: Yes, Angela mentioned that she held a power of attorney for her parents. Now this was called an Enduring Power of Attorney. An ordinary power of attorney would lapse upon someone becoming mentally incapable. An Enduring Power of Attorney endures through the mental incapacity.

TC: So you can deal not just with their share certificates and house things, but you can also deal with the health issues?

SS: No, you can’t. That’s the important part. Under the Enduring Power of Attorney, you can only deal with finance and affairs.

TC: Oh, I’m sorry.

SS: But when it comes to the welfare, there is the new form of this Enduring Power of Attorney, called a Lasting Power of Attorney, and that has two aspects: One is financial and property affairs and the other side is the welfare side. But there is a big difference – that’s very expensive now and about 53 pages worth of forms compared with 4 pages worth of forms on the previous one.

TC: So just to get that ability to sit in with these tribunals and make decisions on behalf of your parent, you need to fill out a 53 page form, pay a lot of money…

SS: That is one way. I think most of these tribunals would listen to close family. Of course in this case, the next of kin would be the father but of course the father is already in that position of being incapable of managing his affairs so the only persons it falls down to then would be children.

TC: Well I’ve got someone here. Malcolm in Lincoln, is saying, “Yes, my Mum is in a home, I love her, but she wants to go.” Angela you have had a lot of experience of this now. If you were able to make a decision, would you advise people to go into a home or stay at home?

AS: There usually comes a point where you can’t stay at home. It’s either too dangerous for you to stay at home or you just cannot look after yourself, and that’s why most people go into a home. I don’t think many people choose to go in to a home if they are capable of staying at home.

TC: Linda again has texted in: “There are lots of elderly in care homes who should be in nursing homes. They cannot cope. This is a huge problem – many elderly need nursing care.  They should be treated with much more dignity. I could give you a lot of stories you wouldn’t believe.” Well Linda, get on to our forum and let’s have your stories. I can’t read them tonight, but for the future.

And Steve in Walsall says, “It’s a disgrace. They can spend billions on illegal wars, but can’t look after human beings. They are inhuman.” What do you think about that?

AS: I suppose every system is run by people, and people are either inherently good or they are ‘box tickers’ and at the centre of all this is a vulnerable person who needs protection and needs care.

TC: OK, let’s go back to your father then. What happened next?

AS: So about a year down the line from my initial question, another assessment was done and Simon came with me to that one because I wanted them to know that I was on their case and also that Simon was another pair of ears and another voice.

TC: So you wanted them to know that you had legal advice so they couldn’t pull the wool over your eyes with their nonsense about “she uses a wheelchair for long distance trips.”

AS: Yes, but it was also really good to have Simon there, because during the assessment, there are so many comments flying around, its useful to have someone else to pick up on things and to question things that you might miss, and to raise issues that perhaps haven’t been considered in the meeting. And it was very apparent at that assessment (and I was perhaps more acutely aware of it by that time) that there was so many holes, so many gaps, things that weren’t being taken into account –

TC: Such as?

AS: The medical history, for example.

TC: Once again they weren’t using the medical history.

AS: No, and there were elements of his health that they weren’t aware of still, at that point.

TC: So you could have said anything you liked? If they haven’t got the records, you could have said well actually now he is suffering from this, he is suffering from that.

AS: I could have, but they would have checked.

TC: So they kind of did know, they were using it to their advantage, but not for yours.

AS: No, I suspect that they didn’t know at that point, but they then spoke to other people afterwards to confirm and to pull in the information that I said was available. But at that same time – in fact I think it was the following day – sadly my father was diagnosed with terminal cancer.

TC: On that same day.

AS: I think it was the day after, so it was a very traumatic time.

TC: He is still alive isn’t he?

AS: He is still alive. And then everything fell into this black hole. The assessment had been done. Whatever was happening with that assessment was happening. I didn’t know the result of it, but also I was absolutely appalled at the way his cancer diagnosis was handled, and I feel sure that the lack of information that we had and the lack of any support or care was down to two things: 1. He is in a care home, and 2. He is old.

TC: How did they break the news to him and to you?

AS: We went to a routine hospital appointment, myself and him.

TC: Was that a standard thing that you went with him?

AS: Yes, because I wanted to know what was going on and we were actually going to see his neurologist. His neurologist also handles quite a lot of elderly care at the hospital and had the results of some scans he [my father] had had before – which showed that he had a massive tumour on one of his kidneys. So the neurologist broke the news to us, which was a real shock as we hadn’t expected that at all – and then nothing, nothing at all, no information, no ‘how will this be’, what –

TC: The neurologist simple said your father has got terminal cancer? Did they not suggest surgery? I mean you can survive on one kidney?

AS: He showed us the scan. The tumour is so large it’s very much wound up with a lot of the blood vessels. His view was that if they were to operate, he would bleed to death and the feeling I had was that he is an old man, it’s not worth it and in a way –

TC: But they didn’t actually say that.

AS: No, in a way I agree with them, but in a way, I also feel “Where are the options? Where’s the information? What else could be done?”

TC: I am sure there are skilled surgeons who can remove a tumour with the patient bleeding to death.

AS: I don’t know, but that’s how it felt.

TC: I think evidence is that there are.

AS: I don’t know, I’m not a surgeon.

TC: So they simply said, “Your father has terminal cancer.” Did they give you a prognosis?

AS: No, the hospital was supposed to get in touch with us to provide all this information, but there was nothing. And I rang and rang the hospital – there was nobody at the consultants department, nobody answered the phone. I was tearing my hair out thinking how could this be happening? Where’s the support for somebody who has just been told they have cancer and they are going to die? There was none. Eventually, we were contacted by the local hospice and at that point –

TC: How did they know about your father?

AS: They must have been told via the consultant who contacted the GP, I think, but I don’t really know. But at that point, the person who contacted me from the hospice was the only person in this whole thing who had ever shown any proactive interest in either my father or my mother, so I was actually really pleased they contacted me.

TC: Well, it’s my own experience of hospices is that they are not funded by the NHS at all. All their funding is from fundraising activities and charity work and so on, and a lot of them do a fantastic job, I do know that from my own experience. So presumably they are people with the right motives.

AS: I guess so, yes. I think one of the hospice nurses goes in every few weeks to see my father and that’s – you know, the fact that he may not really want to see them or that they can’t actually do anything is actually irrelevant, because the fact that they are doing that is such a good support, to know that someone else is there and actively doing something.

Watch the interview here.

Read the next transcript – TV clip 8.

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