Lesley Goodburn’s letters written before and after the death of her husband from pancreatic cancer form the basis of Homeward Bound, a play and film that has toured the country as an educational resource . Lesley recently became chair of People in Partnership (PiP), and here she tells ehospice about the invaluable work they do and what she aims to achieve in this role.
How did you become involved with PiP?
During 2016 I worked with the National Council for Palliative Care to (NCPC) to develop a play, film and education package called Homeward Bound, which was the story of my husband Seth’s journey through late stage pancreatic cancer. Homeward Bound looks at love, relationships, empathy and compassion at the end of life and has been developed to help people, especially healthcare professionals, reflect on their personal practice. After working with NCPC I became involved with PiP and joined in 2017. I wanted to use Seth’s and my personal experience to influence high level policy, operational day to day service and to effect change at a one-to-one level helping healthcare professionals give personal and family-centred care at the end of a person’s life.
What are the main aims of PiP?
The Pip brings together the voices of people with lived experience of life limiting illness and palliative care along with people who have experienced death, grief and bereavement. Working in partnership with Hospice UK the group inputs into projects and takes part in the All Party Parliamentary Group on Hospice and End of Life care. PiP is a critical friend, sharing personal experiences to ensure that programmes of work are based on the reality of people’s needs. The partnership between Hospice UK as an organisation and the members of the group provides a basis to influence thinking about person and family-centred compassionate care.
What do you hope to accomplish in your role as chair?
To continue the work of the PiP and to develop the group and its network to include the voices of more people. Person and family-centred care is important in all aspects of health care, but never as important as at the end of a person’s life where there is only one chance to get things right. One of my aims is to extend the reach of the PiP through the network. It is a virtual network of people with lived experience who want to be involved in sharing their expertise and knowledge, but who may not want to be part of the formal group. A launch will follow later in the year and we are also keen to work with other voluntary/health care organisations that support people with conditions where palliative, end of life, grief and bereavement services are important.
How can people with life-limiting conditions, and those that care for them, access and benefit from PiP?
People with life limiting illnesses are critical to the role of PiP. Currently we have two members of the group who are living with life limiting illnesses and they bring honesty and an understanding of the challenges they experience to the work of the group. As we develop we want more people with life limiting illnesses to be involved and to share their experiences, as we know from our current members the value that their input brings to improve care, and also the affirming value their personal contribution brings to them as individuals.
How can someone join, and why should they?
If you are living with a life limiting illness, or if you have experiences of dying, death, grief and bereavement, and/or you want to make a positive impact this is definitely the group for you. You will be part of a group that has a passion for improving care and compassion, and you will be involved in rewarding work that will make a difference for others who are coming towards the end of their life.