New guidance launched on community development in end of life care

Categories: Community Engagement.

The guidance – entitled Every Community is Prepared to Help – has been produced by NCPC, Public Health Palliative Care UK and Hospice UK.

It contains a range of practical ideas for working with hospices, hospitals, Health & Wellbeing Boards, Clinical Commissioning Groups and other relevant organisations in rolling out community development in end of life care.  

Public health palliative care and community development approaches were endorsed in the national Ambitions framework for palliative and end of life care launched last year. Ambition six is entitled “Every Community is Prepared to Help”.

The community development guidance is published at the same time as an evaluation of eight pathfinder schemes across England aimed at developing compassionate communities.

The Dying Well Community Charter published in 2014 was 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.

All the pathfinder projects reported progress, although in each case a lack of resources held back what they felt they could achieve.

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 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 Every Community is Prepared to Help and is a palliative care consultant.

“Caring for people who are dying, and for those who are bereaved, is not just about giving hands on care,” he said. “It is a response of help and support from family, friends, neighbours, community members, work colleagues and 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.”

Antonia Bunnin, Director of Hospice Support and Development at national hospice care charity Hospice UK, added:

“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.”  

The community development guidance and the evaluation of the eight pathfinder schemes were launched this week at the Community Development Conference held at St Christopher’s Hospice in London.

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