Palliative and End of Life Co-Production Group
What we set out to achieve
The Palliative and End of Life Care Co-Production Group is facilitated by Lincolnshire Integrated Care Board.
Co-production brings people with experience of using services together with those who deliver them, to work together to design new things and make things better for everyone.
What we did
• We listened directly to people with lived experience of palliative and end of life care in Lincolnshire, including patients, families, carers and loved ones, as well as staff involved in delivering palliative and end of life care services.
• This involvement has provided a safe and meaningful space for people to share experiences, concerns and reflections, helping us to understand what matters most at the end of life and where care and support can be strengthened. The work aimed to ensure that services are shaped by compassion, dignity and real experience, and that learning is used to improve care for others.
What you told us
• Individuals have shared honest and deeply personal experiences of palliative and end of life care, highlighting both positive aspects of care and areas where support could be improved. Feedback focused on communication, coordination of care, consistency, emotional support and the experiences of families and carers alongside patients.
• These insights provided a clearer understanding of what good palliative and end of life care looks like and where change is needed across the pathway.
The difference it’s made
• Co produced survey questions for the VOICES Palliative and End of Life Care survey.
• Provided insight and recommendations on the language and definitions used in palliative and end of life care, ensuring these are more sensitive and understandable.
• Shared and reflected on lived experience stories, highlighting what is working well, areas of concern, and opportunities for improvement across the care pathway.
• Contributed feedback on experiences of the ReSPECT process, supporting better understanding and communication around care planning.
• Reviewed and informed updates to key information resources, including Care After Death, Last Weeks/Days of Life and Palliative Care in Lincolnshire leaflets.
• Developed an action plan based on the VOICES survey findings and will continue to inform service improvement, training and information resources aligned to the Palliative and End of Life Strategy 2023–2028 and associated work programmes.
What’s next
• The Palliative and End of Life Care Co-ordination Group continue to meet bi-monthly.
• It will continue to take forward work aligned to the Palliative and End of Life Strategy 2023/28 and work programmes associated with this work.