The Pan-London End of Life Alliance
The Pan-London End of Life Alliance is the first time that key partners from clinical commissioning groups, local authorities, NHS and independent providers, the voluntary sector; and patient and carers groups have come together to support and promote patient-centred, coordinated care commissioning and delivery across London.
The Alliance hopes this will translate into a better end of life care experience for individuals, carers and their families. To read more about the groups that make up the alliance, take a look at our Pan-London End of Life Alliance groups infographic or our 2016 terms of reference.
The Pan-London End of Life Alliance is a social movement that’s working to improve the care and support for people living with a terminal illness and their families in London.
The alliance consists of healthcare, social care and voluntary sector organisations as well as lay individuals. It will identify key areas for improvement so that services work for the people who need them and support individual choice, and there’s more consistency in the quality of care that’s provided across London.
The Pan-London End of Life Alliance is facilitated by an Executive Steering Group made up of senior figures from the health, social care and voluntary sectors. It also includes lay representation.
The alliance works with several interdependent London-wide initiatives including:
- LondonADASS – End of Life Care Network
- End of Life Care Clinical Network
- Pan-London End of Life Lay Representatives Board
- Pan-London End of Life Voluntary Sector Network (in its infancy)
Guided by a board of committed lay representatives, we are identifying key areas for improvement to make services work for the people who use them and support individual choice, and reduce variation in care that people receive, no matter where they live in London.
Research from the Office of National Statistics shows that 88% of dying people who express a preference say that they want to die at home or in a care home.
However, the latest figures in Public Health England's 'What We Know Now' report show that only 44% of people die in their usual place of residence. The majority of people continue to die in hospital, mainly because of a lack of palliative care in community settings.
Many health and social care challenges exist in supporting people's wishes to be cared for and die in their preferred place of residence, and this is particularly evident across London:
- The number of people dying in hospital is 5% higher than the national average
- London also has the highest average length of hospital stay for people with a terminal illness compared to other regions in England
- The 2011 national VOICES survey of bereaved relatives rated overall quality of care across all services lower in London than in any other part of the country
The Pan-London End of Life Alliance Lay Board
Four members of the Pan-London End of Life Alliance Lay Representatives Board speak about their involvement with the new group.
Jonathon Hope: I think the Pan-London End of Life Alliance is a hugely important body that has already got a lot of skill set, a lot of specialties, a lot of expertise around the table. That's a fantastic start, but I think everything at the end of the day has to start and end with the patient voice, because we're the people who have had loved ones die. We're the people who have had friends die. We know what good care and bad care looks like and feels like.
It's more likely that the outcomes that the Alliance is aiming for will make the real difference for all of those in the future who will approach the end of life or indeed die. So that's why I'm really excited about the launch of the Alliance. I'm excited to be involved, but also hugely enthused about the possibility that patients aren't just going to be asked their ideas. They're actually going to be an integral part of this whole process of improving services in London for those who are dying or approaching that point in their lives.
Sally Kirkpatrick: I think partly because I have such a passionate interest myself in it and, therefore, this is a way that I can hopefully get end of life a good experience for everybody, for family, for friends, as well as the actual person dying. I think that possibly it's almost more important for the family and supporters to have a good experience than the person themselves.
Eleanor Levy: I think the experience for many people in this country is unsatisfactory, perhaps the majority, regardless of how well resourced they are. For people with less resources, it's even worse, and they don't get the choices or even the opportunity to choose that they need. Some people want to be with their family. Some people don't have a family. Some people want to die alone. Some people want to die at home. Some people want to die in hospice. Some people want some other community facility. But some people don't even get that choice. People who are homeless, for example, don't have a choice about dying at home because they don't have a home. If their hostel isn't equipped, then hospitals usually aren't the best place to die because they're more into treatment and recovery. It's not such a good place to facilitate people's end of life experience and help to support people and to accept that they're going to die and make the arrangements accordingly.
Terri Specter: Because the experience I've had at the care home is so bad in most cases that it breaks your heart. Instead of giving my kids earache and moaning about it, I'd like to see if I can do something positive and constructive.
Sally Kirkpatrick: I'm joining in the hope that everybody will have the right to an end of life that they want and that they can die where they want to die. It isn't always at home. People think everybody wants to die at home. They don't always want to die at home. Sometimes it's much, much easier for everybody concerned if they're in a place where they've got on-tap medication, professionals, and also their own family can relax because they're not having to dash about loosely for things. So I'm hoping that I will be able to help for this to come about.
Terri Specter: My reason for joining the board is to make a difference, to bring my cynical voice, because I've seen so many box tickers that I want something different. I want to see action to change it.
Jonathon Hope: Personally, I've had so many experiences of losing friends mostly in the NHS system itself. There have been outstanding examples of what we'd call best practice in caring for people. But of course, as always, there have been examples where care has been poor or even inadequate.
So I think I'm really here today for all those examples of where care was poor and inadequate. I just want to share one brief example. I had a friend who was in a hospice. He was a deeply spiritual person and you knew it the moment you walked amongst him. The energy of this chap was of spiritual devotion, but also of compassion and kindness to all he met. What happened in the last few weeks of his life was that he didn't get any care that respected that spiritual need of his. The result was he approached death in fear, without any hope or aspiration, that he'd had most of his life, that death would be a good experience. The result was he was taken out of hospital because his needs weren't even recognized, respected, written down, or acted upon. I think that needs to be changed.
Eleanor Levy: Well, I think I know what isn't good. My mum had complex conditions and how she died was unsatisfactory. I experienced the death of my father in a vastly different way. His illnesses were protracted. He was very ill, but he died at home with his family around him. That didn't happen to my mum, although she wanted that to happen. The main reason for that was a failure of general hospital services to recognize particular conditions that had a relevance. So she was treated as if she was able-bodied except for her disease, when in fact she was suffering from an underlying condition that wasn't adequately treated.
Terri Specter: When my dad died, all the family were around him, and he was surrounded by love. And also an example I gave from the care home where I worked, when I worked there, I took entertainers into the bedridden, and there was an Irish lady who was on her way out and we took in the entertainers and they played her loads of Irish tunes. She was even moving her finger to it, and she just passed away. And that was good because she felt that she was loved in a way. It's very difficult for these people if they haven't got any family or anybody. They have to rely on staff for affection.
Sally Kirkpatrick: As I said, I've had two such very different experiences, and I think it helps to have had an extremely good one. Everything happened the way everybody wanted it to happen, although it was obviously very sad when the end came. We knew the end was coming, and everything had been really lovely up to that point, so that was good.
The other, on the other hand, I think that I can point out a lot of pitfalls that happened. It was some years ago, and hopefully things aren't quite as bad as they were then, but I think a lot of them could still apply. I've got a lot of experience of how things can go horribly wrong.
Jonathon Hope: My personal experience is just really an example of many people who have seen loved ones die or even approached death themselves as I have. I think the rawness of the experience, be it good or bad, has the potential to be a huge catalyst for the Alliance in terms of anchoring the service user and carer voice into their work and ensuring that that continues to happen throughout the whole program so at the end we can proudly stand up and say, "You know what? We didn't just listen to patients. We acted upon what they wanted, and the result is we have across London a different system, one that respects the needs and preferences of individuals and delivers on those needs."
For more information on the Pan-London End of Life Alliance or to get involved, email Meeta.Kathoria@mariecurie.org.uk or telephone us on 020 7599 7277.