Creating new solutions for end of life care
With Guy's & St. Thomas' Charity, London, UK
Everybody deserves great support for themselves and for their families at the end of their lives. At the moment this doesn’t always happen. We’re bringing together end of life care experts with excited members of the community to mobilise a new vision of what better endings look like. And, together we are designing solutions that make that vision a reality for people living and dying in Lambeth and Southwark.
in England in 2013 did not receive any palliative care.
predicted increase in the demand for end of life care support in Lambeth and Southwark by 2030.
“It seemed to me like there was a lack of humanity in the process right from the start. There didn't seem to be anybody that he felt he could ask questions to, it was a medical process that he just had to wait for and in the meantime there didn't seem to be any physical monitoring of the situation or anybody to talk to or give him advice.” Bereaved daughter
The research about end of life care in the UK makes for grim reading. It tells us that too many people die in unsettling environments, surrounded by the wrong people. Too many people die lonely and afraid, unable to access any appropriate support and care. And for too many, some of the most precious days of their lives are spent marking time, simply waiting for the end to come. Current ‘outcome measures’, such as whether someone dies in their ‘preferred place of death’ obscure much of the lived experience of people that are dying, and their loved ones. It doesn’t tell us how they feel, what’s important to them or how they want to be supported.
“Most of what we most value in life — love, friendship, respect, recognition, care — comes from relationships … People die well when they are supported by relationships with people who care for them and provide their lives with a sense of meaning.” Jake Garber and Charles Leadbeater
Inspired by the policy pamphlet Dying for Change (2010) by Charles Leadbeater and Jake Garber, Better Endings has been thoughtfully brought to life by Innovation Unit working with experts from within and beyond the clinical and professional care systems who are ambitious and impatient for change. Focused in South London, we’ve started by listening to people living and dying in Lambeth and Southwark about their experience of death, dying and loss.
“Death and dying have become the business and the responsibility of professionals and society and the public don’t recognise their role or their opportunities to influence it in the way that they might have done historically.” Heather Richardson
to bring together a fresh new group of people to think, design and test radically new approaches.
We know that relationships are at the heart of supporting people well at the end of life. And we believe it’s not just strong relationships with professional services that care for people that are important – we all have a role to play. We’re mobilising the great energy, ideas and capacity that exist in the voluntary sector, and in wider social and community life. We’re creating space for a diverse, expert group to come together and think differently, and supporting them to design and prototype new solutions for better endings.
The first major event of the programme in April 2017 will bring together more than 40 people from across Lambeth and Southwark to hear the stories we’ve collected about people dying and grieving in the boroughs. With representatives from hospices and hospitals, GP clinics and domiciliary care, homeless shelters and community groups, we’ll be thinking together about the key areas of opportunity for our work going forward.
Whilst our current focus is on South East London, the insights we surface and approaches we develop should be of much-wider interest. We want to be part of a growing movement for change in the way we think about and behave around death and dying.