Charity calls for radical changes in support for end of life care

19 July 2016
The National Council for Palliative Care is calling for radical changes in the way that communities support bereaved and dying people. The call follows the evaluation of early work by eight pathfinder groups aiming to develop compassionate communities.

(From left to right: Libby Sallnow, Research fellow & doctoral student, St Joseph’s Hospice & University of Edinburgh, Debbie Horsfall, University of Western Sydney, Simon Chapman, Director of Policy and External Affairs, NCPC, Julian Abel, Consultant in Palliative Medicine, Weston NHS Trust & Expert Lead, Dying Well Community Charter, NCPC)

The evaluation of the eight pathfinder schemes across England was published today in conjunction with Each Community is Prepared to Help, new guidance supporting community development in end of life care. Both were launched at a national conference on Community Development in end of life care held at St Christopher’s Hospice in London yesterday. The conference was organised by NCPC in partnership with Hospice UK and Public Health Palliative Care UK. The conference heard from international experts in this emerging field, including Professor Debbie Horsfall, Professor Allan Kellehear and Dr Julian Abel.

Debbie Horsfall told the conference that her sense from an Australian perspective was that there is real momentum and excitement building up in the UK behind public health approaches to palliative care and community development. Four of the Dying Well Community Charter Pathfinders also spoke about their experiences with using the charter approach to galvanise local capacity building in their communities.

The Dying Well Community Charter was published in 2014, based on the principles that “dying and death do not happen in isolation from the rest of life” and that “care for one another at times of crisis and loss is not simply a task for health and social care services but is everybody’s responsibility.” Later that year eight areas were chosen out of 23 applicants to be pathfinder sites, to put the charter approach to public health palliative care into practice. All eight areas launched their local activities in the first half of 2015. This was the first time that these approaches had been tried at national scale.

The eight areas chosen were: Birmingham, Cheshire, Dorset, Hackney, Hull and East Riding of Yorkshire, Lancaster, Liverpool and North Somerset. Although the different projects were each tailored to their local areas, each had a local launch event and a series of local meetings. All the pathfinder projects reported progress, although in each case a lack of resources held back what they felt they could achieve.

Public health palliative care and community development approaches were subsequently recommended in Ambition 6 of  the national Ambitions framework for palliative and end of life care launched in 2015. Ambition 6 is headlined “Every Community is Prepared to Help.” The Ambitions framework was strongly endorsed by the government when launching its new National Commitment on end of life care earlier this month.

The new guidance published by the NCPC, Public Health Palliative Care UK and Hospice UK contains practical advice for community development in end of life care. It contains case studies and practical ideas for working with hospices, hospitals, Health & Wellbeing Boards, Clinical Commissioning Groups and more in rolling out community development in end of life care.

Simon Chapman, Director of Policy and External Affairs for the NCPC, said “taken together these two documents point us towards radical changes in community support for bereaved and dying people. We need to recognise dying, death and bereavement as being much more than just medical happenings, and re-imagine the role we all have to support each other as we go through these experiences, which are an inevitable part of life. The pathfinder projects have shown how relevant and supported local initiatives can make a difference to their areas. Although each had both good and bad experiences, overall we see there is a real need for these activities, and that the only limitation is the resources available. At the same time, the guidance on Ambition 6 adds further practical advice.

“The Government’s national commitment to personal choice in end of life care promises a breakthrough in end of life care, but in practice this will need more support to be delivered locally. Engaging communities, and developing local capacity to support dying and bereaved people and those who care for both will be essential if we are to meet the goals we have been set.”

Dr Julian Abel is one of the authors of Each Community is Prepared to Help, and a palliative care consultant. He says “Caring for people who are dying, and for those who are bereaved, is not just about giving hands on care. It is a response of help and support from out family, friends, neighbours, community members, work colleagues, school support from other children. It is about how we support each other wherever we are. We all have a responsibility to care for each other, creating compassionate communities. A compassionate community recognizes that care for one another at times of crisis and loss is not simply a task solely for health and social services but is everyone’s responsibility. This encompasses the full range of support, to simply being a friend, to helping with the tasks of life such as shopping, cooking and cleaning, to providing physical support to someone with a terminal illness. The challenge for professional care organisations is to find ways of working with and enhancing the naturally occurring supportive networks that make up a compassionate community.”

Antonia Bunnin, Director of Hospice Support and Development at national hospice care charity Hospice UK, said: “Building the capacity of communities to care for people at the end of life is a vital step in improving the support that we, as a society, give to people experiencing dying, death and loss.

“The evaluation from the pathfinder schemes and the new guidance on community development in end of life care are extremely valuable resources for everyone interested in strengthening community capacity to care for dying people and their families.

“Hospices are renowned for their compassionate ethos of care and have strong and wide-ranging links across their local communities. They can play a key role in spreading understanding of how to support people through death and grief. Many hospices are already pioneering community development initiatives, and these publications will help to strengthen and extend such work.”  



Every Community Prepared to Help can be downloaded here.

The Pathfinder Evaluation document can be downloaded here

Simon Chapman is available for interview.

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