Transforming Palliative Care: Working with people with personal experience

Categories: People & Places.

Jean Hindmarch, Projects Director at Hospice UK, reflects on how people with personal experience of hospice care have been involved in the design and delivery of Hospice UK’s national conference “Transforming Palliative Care.”

We have worked closely with the People in Partnership Forum (PIP), and with others who have personal experience of hospice and palliative care, to ensure they are involved in many aspects of this year’s national conference “Transforming Palliative Care.” These include participating in the abstract review process, speaking in or chairing conference sessions, informing the content of the opening plenary and having a lunchtime presence at the conference in what we are calling a ‘conversation corner’.

Well before the conference, PIP member Karina Christiansen was one of twenty-two people who worked with a partner to review and score a selection of abstracts submitted via the Call for Papers. This is the process via which people submit abstracts about their work with a view to it being presented as either a poster or a short talk. The reviewers’ scores and recommendations were considered and discussed at a meeting, chaired by Dr Sarah Russell, Hospice UK’s Head of Research, during which we selected over 300 abstracts for display as posters and 25 for presentation as short talks.

During the conference, several members of the group will be speaking in or chairing sessions. Ian Leech, Vice Chair of PIP and Community Engagement Manager at Giles Hospice, is speaking in a session focussing on community involvement, and how to translate thoughts into action. PIP-member Lucy Watts MBE, a patient leader and disability activist, will also be part of a line-up addressing what it is like for children and young people to live with a life limiting illness. From beyond the group, Lynn Cawley joins colleagues from the RCN and Skills for Care in a session featuring ‘Bounce Back Boy’, a film telling the story of her son Josh’s palliative care journey, and the struggles they both faced in trying to ensure good quality care for him. The session will be focused on using personal experience to tackle the challenges of transition, discrimination and indifference, and as a catalyst for change and improving care.

We are also delighted that PIP Chair Lesley Goodburn will chair a session on ‘Bereavement care for the 21st century’ and that Heather Richardson, joint Chief Executive of St Christopher’s, is consulting members of PIP on the content of her opening plenary ‘Reinvention – of course, but how do we do it?’

“The voices of people with lived experience of end of life care and those living with life limiting illnesses have such an important role to play in challenging traditional thinking and shaping the design of future care” Lesley said.

“The People in Partnership forum has been an integral part of the planning of this year’s Hospice UK conference and we are looking forward to delivering sessions, sharing our work in the conversation Corner and launching an exciting new initiative to extend and develop reach in the future.”

If you would like to engage more directly with Forum members, we are inviting those who are at the conference to participate in a ‘conversation corner’. The purpose of this space is to facilitate conversations and to encourage and support other organisations to involve people with personal experience of end of life and palliative care into their own work programmes.

The dedicated space will be in a prominent position in the foyer to the exhibition hall and will be open over the lunchbreak on 27 November.

The conference takes place on 27-28 November in Telford. You can find out more about the sessions and speakers, and the wider conference content, on the conference web pages.