Building a joined up response to social welfare needs in end of life care.
- Health & Social Care Research, Public Involvement & Engagement
Introduction: Social welfare needs, including problems around money, jobs and suitable housing, are frequently encountered by people diagnosed with a serious illness. These issues also impact family members and other carers, who often find life is turned upside down. There are legal rights, entitlements and protections relating to the common social welfare needs, but many people, and professional care providers, are unaware of these, or don’t know how to enact them. Many organisations and agencies are relevant to the health and social care needs of people living towards end of life, including community groups, charities, advice services, legal services, social services as well as health and social care providers. But these organisations are not joined up, making it even more difficult for people to find the advice and support they need.
This project, funded by NIHR Applied Research Collaborative North East and North Cumbria, investigated learning together, as a multi-agency system, as a way to work together to meet social welfare needs towards end of life more effectively. This used an approach called Human Learning Systems (Human Learning Systems). Our geographic focus was Gateshead. We worked together with a group of people with lived experience (PPI group) and a multi-agency stakeholder group to agree how the system needs to respond to meet social welfare needs in life-limiting illness, and how learning together can promote working together.
People with lived experience of social welfare needs and life-limiting illness were recruited through VOICE and became our PPI group. Nine people joined the project, mostly from the North East of England but three from elsewhere in England. Most were current, or bereaved, carers. We started the project by running focus groups with our PPI members, hearing their experience of seeking, and finding, support for social welfare needs and the challenges they faced. We produced a short video from these focus groups and used this as a foundation for discussion with stakeholders (you can find this at https://youtu.be/f6G04-0-8dU). Both the PPI and stakeholder groups helped us to define the response that’s needed across the health, care and support system. We re-engaged our PPI group towards the end of the project to share findings and consider next steps.
The impact of PPI involvement in this project was significant. It helped change our focus from services, to the people needing those services. We appreciated the need to respect our PPI contributors as equal partners, bringing expertise into the discussion and development of the project. The impact on our thinking was so significant that we presented this at the Marie Curie Research Conference in February 2022 (5 Managing social welfare needs in life-limiting illness: is there a system response? | BMJ Supportive & Palliative Care). We continue to work with the PPI group in our follow-on project and we are planning ways to include people with lived experience within our service innovations.
Author: Colette Hawkins, Associate Clinical Lecturer, Population Health Sciences, Newcastle University