Title: Will a new model of care for people with end of life care needs who are impacted by problematic substance use improve their access to and experience of support and care?​
Funder: Department of Health and Social Care

Abstract: Research question What should a new, co-produced, model of care look like for people with problematic substance use needing end of life care? To what extent does the new model have the potential to improve people s access to, and experience of, end of life care? Background New research by our multi-disciplinary team shows that the social and health care needs of this group of people are not being met (Galvani et al. 2018). The problem is exacerbated by gaps in policy and practice frameworks with each issue lacking attention in the policy and practice frameworks of the other. This gap results in care provision that focusses on either substance use (SU) or end of life care (EoLC), resulting in services and staff not equipped to respond adequately to people s needs. Liverpool, the geographical location for this study, is a region disproportionately affected by substance-related morbidity and mortality. Aims and Objectives We will build on our recent research to co-create a new model of care for people with problematic SU and EoLC needs and their family, friends and carers. The objectives are to: Develop and implement a new, co-produced, integrated model of care in partnership with people with experience (PWE) (current or past), families, friends, carers (FFC) and professionals. Establish whether people receiving the new model of care, and their FFCs, have an improved experience of care. Establish whether people in need of care and who sit outside of EoLC and SU services are more able to access care. Determine whether the professionals supporting people with problematic SU and EoLC needs feel better supported by the new model. Methods The model will be co-produced with a range of partners through participatory action research and measured using mixed method approaches. The new model of care will be underpinned by a theory of change, co-produced with PWE. It will be implemented then measured using a pre- and post-test design in addition to process monitoring through qualitative research methods including individual interviews and focus group discussion. Timelines for delivery The proposed start date is June 2019 and will run for 30 months. The initial roll out of the new model is anticipated to be around month 9. Anticipated Impact and Dissemination The anticipated impact is to deliver a model for social and health care that better supports people with overlapping SU and EoLC needs. Importantly, the intention is to improve access to services for people with both issues, and to provide a more informed and supported end of life for people who are not engaging with end of life or substance use services. This includes improved screening, engagement and care coordination of individuals as well as their family members, friends and carers. Dissemination will take place at a local level as well as a national and international level through both academic and practice fora and through social media and existing web based resources. This is likely to comprise papers and conference presentations but also practice and policy briefings, and information leaflets.

Lay abstract: This research aims to improve end of life care for people with alcohol and other drug problems, their families, friends and carers (hereafter, FFCs). It uses what we found out about their experiences from our recent research. That research showed that the social and health care needs of this group of people are not always being met (Galvani et al. 2018). They face a range of problems in finding the right kind of support and can face negative attitudes from social and health care professionals. The fear of the poor response they may get leaves people feeling alone and more likely to avoid services and support, or they leave it until much later in their illness to get help. By this stage, their illness can be fatal and their needs are more complicated. The research we are planning to do builds on these new research findings and puts our learning into practice. In this research, we will: Develop and introduce a new way of providing care in partnership with the people who are ill and their FFCs. Check whether people who get the new model of care, and their families, have a better experience of care. Check whether people who are not currently using services (but need care and support) find it easier to get help and support. Investigate whether the professionals working in these services feel better supported by the new model. To achieve this we will do two things: i) ask people what their experience was like, ii) see if there are any differences in people s care before and after the new way of providing care is put in place. People with direct experience will be at the centre of the research process, through a way of doing research called Participatory Action Research (PAR). PAR is a way of researching in partnership with a range of people where everyone involved contributes ideas to what the research should look like, not just the researchers. Second, we will also use before and after questionnaires to check for any early signs that it is working. We will be working closely with social and health care agencies working in substance use and end of life care services in Liverpool and Sefton, including Mersey Care NHS Foundation Trust, Liverpool City Council Adults Social Care, Addaction, YMCA, The Whitechapel Centre, Sefton and Southport Adults Social Care and Marie Curie. We will agree ways to tell people about the research in discussion with our PWE colleagues to ensure we reach as many people as possible. This might include reports, social media and conference presentations and other ways to share what we have learnt.

Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES;7.2 END OF LIFE CARE;7.1 INDIVIDUAL CARE NEEDS
Health categories: GENERIC HEALTH RELEVANCE