Professor Ilora Baroness Finlay of Llandaff discusses the work of Dying Matters and the National Council for Palliative Care. She focuses on the importance of developing community involvement in end-of-life care.
This presentation was recorded at our conference, Innovative approaches to end-of-life care, on 22 September 2016.
Thank you very much for asking me to come and speak. I am going to talk about this from a slightly different perspective, really from the population’s responsibility within a community to look towards others. And I am very grateful to both speakers who have gone before, because they have touched on some things which I am also going to touch on, so I hope you will feel that it all links up well. We are coming up to World Hospice and Palliative Care Day, that is I think October 8th. And the theme around living and dying in pain, it doesn’t have to happen. Of course in many parts of the world it is even more pertinent than here. We know that 80% of the world’s population don’t have access to opioids, 6% of people around the world who are dying are children with absolutely no analgesia at all. So we are very lucky, we have got fantastic resources compared to a lot of the world, so why aren’t we doing better all the time for everybody, one could ask that question? Because we know what to do, but we are just not always doing it.
The National Council vision is relating to everyone who has palliative care needs, should receive the high quality care and support they need where and when they need it, and the when I think becomes really important. Slight commercial for Wales, which is where I am from, as some of you may know, but we have had seven day services for some years in palliative care, and we have 24/7 advice across the whole country. So you can do it with a remarkably small budget, but it does mean change, because the crises arise out of hours. And the choices review which I am sure all of you in this room have seen, and look at, came out with the things that people actually all know and all hear, these are things that people want, and are important to them. And the government response to that, that has already been spoken about, was this. And I do want to quote Ben Gummer, because I think it really demonstrates the commitment that every person nearing the end of life should receive attentive, high quality, compassionate care, so their pain is eased, their spirits lifted, and their wishes for their closing weeks, days and hours are respected.
So it is quite a major commitment, and the six commitments as already addressed relate to having honest discussions. And those honest discussions have to start really early. Serious illness, we don’t know which way it is going to go. The honest discussion is about uncertainty, and uncertainty is the thing that we don’t address adequately, because as healthcare professionals we want to have answers. We like to have answers, but the truth is that we haven’t got any, and there is a really good study about prognosis come out just recently, we get it wrong all the time, all the clinicians in the room know that. Informed choices about care, well that is a huge burden on the people giving the information, because you are the filter as to not only what the information is that you give, but how you give it. If you are miserable, you will make people feel miserable. I go back to Ben Gummer’s one about lifting people’s spirits. So if the team themselves are miserable, they will give the message that really this is even more miserable than you thought.
Personalised care plans for everyone. That might sound simple, it is a really big ask actually. And involving people around...we know that less than half the population have made a Will, people haven’t written a Lasting Power of Attorney for health and welfare decisions, particularly not at an enhanced level. So when a crisis happens, when their capacity is temporarily impaired, because lots of people, over half, have fluctuating capacity at some time during their illness, who do people turn to? And families think that next of kin has legal status, it has none. You are just there to be consulted in the same way as the neighbour or whatever. There is no such thing as next of kin. It is a nice term we use as a shorthand, I think it really means who do you want us to tell when you are dead? And who will take responsibility for your body when you are dead? That is really what the shorthand is.
So we also know that people need to know who to contact. There is nothing worse than 3:00 in the morning on a Saturday night, trying to phone through to the numbers you have got, getting an answer phone, getting shunted around, being told somebody will call you back within an hour. Two and a half hours later they haven’t, nobody has called back. And then you start the story all over again, you phone through, you get through to somebody different. Or then you get told ‘Well you had better go to A&E’ particularly if someone has had a fall or whatever. And there are some parts of the country now where apparently out of hours services can’t staff right round the clock with GPs. So there are gaps, even in the medical care out there, in the community. Some of you are nodding, so you must have had experience of that yourselves. And the themes in that document that Ben Gummer introduced are around personalised care, improving quality, using innovation. There are some fantastic innovative pilots going on around the country, really superb. Sheffield is taking a lead in many ways in doing things differently, in leading and commissioning differently. Education and training, I do have a worry that we ask more and more and more to be put into education and training, yet the clinicians are so busy, they can’t get a cup of tea, you know?
I have come across clinicians who say they had gone the whole shift, and they hadn’t been able to go to the toilet. How can you expect them in those pressures to go off on a nice training programme that somebody has planned? Lovely theory, but let’s be real, people are exhausted. And then strengthening accountability and the metrics and so on, and of course that’s right, and of course the horror stories of the past should and must be history. We have already about the visions. The one I want to look at is each community is prepared to help. Because we cannot ask more and more and more of services that are increasingly squeezed, when social care is incredibly important, but the budgets aren’t there. People aren’t getting out, aren’t getting what they need, because the social care budget isn’t there, so we have to do things differently or as a country we have to go over to a completely different funding formula for the whole of healthcare, but that is political, and I am not going there.
And in this, about communities being prepared to help, that is about public awareness, about using volunteers, and using them differently, and remembering that there may be people who are not formal trained volunteers, but who will form a network around somebody who is ill. Just at the time that they are ill, or they need support, and the difficulty of course is chronic illness, it is not the dying bit, it is all that getting ill, going downhill, up and down beforehand. That is when people get carer fatigue, and get worn out, that is when families end up on their knees. They are all ready for the death, and then the person comes out of it again, and might carry on for years.
So what are the problems? I think the problems are relating to resources, you have already heard about those and the pressures. We have heard about a third of people living alone. Loneliness is a huge issue. And one of the problems quite apart from anything is that people who are lonely, and who have slightly impaired capacity, or just are on that little bit before it is really impaired for taking decisions, so they can take decisions, but they seem to be very vulnerable. And I think the big word is vulnerability in this population, because they are often the victims of fraud. And there is something about our duty in society to protect them from people selling them all kinds of things, offering them all kinds of services, that are completely outside our regulation and control, but will actually drain them of money, mislead them, and so on.
And I have had an interesting time with the Office of the Public Guardian where Lasting Powers of Attorney really aren’t picked up enough. And they have got a large fraud department, and some of the stuff they come across is just dreadful. I have already said about the difficulty of living with uncertainty, and the fact that care needs fluctuate and do so unexpectedly.
So what have we been doing in the National Council? We are trying to upskill all those communities out there, developing community charters, community involvement, so people talk about what they need, what they have got on offer. There are some fantastic compassionate communities. I was down in Weston recently, and they have got a great scheme going. And those of you that know Weston‑super‑Mare, know that it is not a terribly wealthy area generally, but they have managed to harness a huge amount of energy, just in the general population to support people, take the pressure off some of the health and social care services, but also act as an early warning, and deal with some of those problems around vulnerability, frailty and also augmenting what people are doing.
We have got dying matters on the website, find me help, it gets thousands of hits. People want to know where they can go to get help. We have got a whole lot of resources there to help and support people. Interestingly the one being there which is the man with the red scarf holding the hand of the lady with the pink scarf over here, is one of our most used resources. Because people don’t know what to say, what to do, and it is just there very simply to say ‘It’s okay, just be there, just be there’ that is what you need to do, because the loneliness and the fear are the big issues. And about having difficult conversations around lots of issues, all those leaflets are available on the website. And it is also about developing communities, and we have been working with others in all that we have been doing, we are working in partnerships with other voluntary sector providers, looking at the public health needs in palliative care, to transform community support, and help people find new ways of working. And again descriptions of those are there.
But there have been a couple of interesting projects that I just want to highlight. One of them has been the one that we have been doing with Macmillan on building on the best, and the hospital sites that are there down on the side listed, and the topic areas are really to try to drive up the provision of care within those sites, and help support people. And there is good evidence that if you have got good palliative care, and you have got good symptom control, and people’s needs are addressed, you can get them home earlier, and they don’t sit there waiting and dwindling on a ward until things get worse.
And the other has been the emergency care improvement pilots. And those are really important, because actually out of hours is a problem area. There are five sites involved in that. The number of patients who now present as emergencies is phenomenal. I know that last Monday night at St Mary’s in Paddington, so just down the road from here, if anybody is ill here, that is where you will be taken. On Monday night, they had 70 patients into the emergency department. One consultant, two junior doctors, how do you cope with that? Because that wasn’t just the minors, there were some really big majors in there. Assaults, road accidents, horrible, horrible trauma, cardiac arrests where the team are having to decide whether to carry on or pull out, with a hospital, with all the beds full, where do they move these patients on to? That is what is happening in the emergency end of the services. When we have had the patients come through and filtered out of all that, in a way it is a luxury, because it is in that acute crisis, and don’t forget it is in those places that lots of people are also dying. And what happens there will as has been said live on in the memory of those left behind.
And I think we just have to remember that if we are going to improve the experience of everybody, and each person has spoken about families here, the memory lives on, it is emblazoned on the memory. And it might be the grandmother who is dying, or the grandfather, they may be the most important person in that child’s life, they may be the source of stability, and when they are dying, that child needs support. The school need to know what is happening, neighbours around need to know what is happening, and if they are teenagers, they often don’t get much support because they exhibit such difficult behaviour sometimes in response to being bereaved.
So I think Cicely’s words should actually be the things that drive us forward all the time. And my last thought for you is think patient, think child, because these children will grow up and live with whatever experience they have now, and we can do whatever we like for services around a patient, but if we don’t remember about the broader circle of people who are being affected, their misapprehensions, their misunderstood perceptions of what has happened, will just carry on through the rest of their lives. And I am afraid it happens far too often. So the challenges are huge, and they are out there in society. Thank you.