Title: Meeting Social Welfare Legal Needs in End of Life Care: Co-creation of a System-wide Research Partnership
Funder: Department of Health and Social Care

Abstract: People nearing the end of life, who are expected to die within 12 months, often experience a wide range of problems. In addition to poor health, they often have problems around daily life (social welfare problems), such as money concerns or problems with unsuitable housing. These problems can also affect family members or others caring for the person who is ill. They can be very upsetting and cause difficult practical problems, but finding help is not always easy. Although there are many services involved in supporting people towards the end of life, they often don’t link together and it can be hard to know where to go for advice or help around social welfare problems. For many people, this means these problems are left unresolved, even though they may have legal rights or entitlements which would improve their situation. _x000D_ Some people are more likely than others to experience social welfare problems towards the end of life. These include people living in deprived areas, certain groups in society, such as people from ethnic minority backgrounds, and people with complicated needs, such as people with dementia. It is important that our research considers the people with the greatest need and also that our research includes places and organisations which are not usually included in health research._x000D_ Our research so far has built a network of organisations committed to improving social welfare problems towards end of life. We have shown that learning together can be a way to help services work more closely together to improve social welfare problems. We have also shown that people need the help of a link worker and could benefit from the support of someone who has had a similar experience (peer support). These are the approaches (intervention) we would like to test in a research project. The first step is to agree how to deliver and test the intervention._x000D_ Our project takes a ‘big picture’ approach, considering the services as a whole system, rather than individual parts. This makes it different from most traditional health research projects. We will build a partnership group, including research experts and representatives from a number of organisations across healthcare, social care, charities, social services, advice services and legal services. We will also include people with personal experience of social welfare problems towards end of life. This partnership group will work together to agree how to deliver and test our intervention. We will run two workshops and one online task, led by members of the research team. These will explore how we offer our interventions to all services and how we make sure our research is available to everyone accessing those services. We will also think about what success looks like and how we test the effect of our interventions._x000D_ The main outcome of this partnership work is an application for a follow-on research project, to test our intervention. Our research could change practice, as we are linked with a team at University College London, which is working with policy-makers to make partnerships between health services and social welfare services part of standard practice. We also have routes to sharing our findings and the experience of this partnership work.

Lay abstract: Proposal: to build research capacity and capability within a multi-agency partnership group in order to improve social welfare support towards end of life._x000D_ Background: Social welfare legal (SWL) needs are matters of daily life for which the law defines rights and protections, including finances, employment and housing. They disproportionately affect people with complex health needs and/or social disadvantage and are prevalent and burdensome towards end of life, affecting patients and informal carers. Routes to support are often unclear and difficult to navigate, resulting in unmet need or battles to access support. Our research has built a network of national stakeholders and generated a proposed system-wide intervention, including interprofessional learning and direct SWL support using link workers and peer support. _x000D_ Aim and Objectives: The aim of this work is to co-design an intervention delivery strategy and research approach to evaluation of our intervention. We will build research capacity and expertise within our core project team and extend our multi-agency partnership group, increasing representation of disadvantaged groups, research naïve or inexperienced sites and under-researched areas. Together with people with lived experience, the partnership will co-design an approach to delivery and evaluation of our intervention, leading to a Part 2 application. A complexity-informed approach (Human Learning Systems) will provide the methodological framework. The partnership is intended to be sustained, building the evidence base and supporting innovation in this field._x000D_ Methods: A webinar will introduce background, methodology and aims to the partnership group. Two facilitated workshops and a Delphi exercise will follow. Workshop 1 will consider the partnership group as a Learning Community, confirming membership, identifying expertise and experience within the group and agreeing priorities for discussion in Workshop 2. The Delphi exercise will focus on specific areas of intervention delivery and evaluation. Workshop 2 will build on this, capitalising on the expertise within the partnership group, to agree the research strategy including consideration of meaningful outcomes for our research and the infrastructure needed to deliver it. Thematic analysis of workshops and sense-making of findings by the partnership group will lead to co-production of a Part 2 NIHR funding application._x000D_ Timelines for delivery: Month 1: introductory webinar; month 2: Workshop 1; month 3-4: Delphi exercise; month 5: workshop 2 and data analysis; months 6-10: draft, edit and submit Part 2 application; months 9-12: dissemination of findings._x000D_ Anticipated impact and dissemination: There is a need and opportunity to foster a system-wide response to SWL needs towards end of life. Our network of national stakeholders has demonstrated commitment to a collective response to a widely recognised problem and provides a route to knowledge mobilisation. Our collaborators at UCL Centre for Access to Justice are working at national policy level to address social determinants of health through closer partnership of providers across health, social care and the wider system supporting SWL needs. We plan to build the evidence base and support the national dialogue to influence policy change. We will also disseminate our experience of the partnership process through ARC-NENC, Fuse, HLS Collaborative, Voluntary Organisations Network North East and peer review publication.

Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: GENERIC HEALTH RELEVANCE