Living & coping with Persistent Physical Symptoms (PPS): Co-design of community-based, health and wellbeing solutions.

Research Question What are the multi-sector interventions with the most potential to improve quality of life for people with PPS, in communities where health and wellbeing resources are hard to access and navigate? Background Persistent Physical Symptoms (PPS) describes bodily complaints not explained by obvious medical causes. PPS affects approximately 1 million UK adults who receive repeat investigations, with an NHS cost of £3 billion annually. PPS is labelled using a range of broad terms, leading to fragmented discussions and understandings, and medicalised approaches that do not address holistic support. Aim To improve the health and wellbeing of people with PPS by: Objectives Developing an appropriate way to discuss and understand personal experiences of PPS, acceptable to people living with PPS, that does not rely on overly medical terminology and understandings. Exploring how community-based PPS services and supports could improve life in ways that matter to people living with PPS, to understand effective outcomes. Understanding what matters to people when managing PPS in their communities and accessing both formal and informal support for PPS, in any sector, in the localities of Ashington/Newbiggin and Blyth. Co-producing recommendations for improving community-located resources, interventions, and ways of working, that improve the health and wellbeing outcomes for people living with PPS. Methods A community-based, participatory approach developed with people living with PPS and a group of 25 senior stakeholders from primary and secondary care, commissioning bodies, local authority, voluntary sector and academic organisations. Three work packages: My experience - 1-to-1/group interviews (n=15-25) with people with PPS, to understand their PPS lived experiences, including impacts, priorities, frustrations, questions, and suggestions. How?, what? and where? – Ethnographic walks/table top mapping exercises (n=15-25), to understand how?, what?, and where?' matters to people when managing PPS in their community. Even better if... – three large group events (3 x n=up to 50) where community members and stakeholders will be supported to generate even better if... proposals for improving community support and resources for managing PPS and promoting wellbeing. Sampling will be purposive, via contact with engaged community groups, with inclusion criteria as having self-identified PPS and living in Ashington/Newbiggin/Blyth. Research team members, community practitioners, and community leaders will speak with community members directly to discuss recruitment. Accessible information and informed consent material will be co-created with Healthwatch (a local health and social care champion and an independent statutory body) and PPI members. Timeline Preparation: minus 4-month 2 WP1: Months 3-9 WP2: Months 6-11 WP3: Months 12-18 Dissemination: Months 18-24 Impact and dissemination Community members and other stakeholders will be centrally involved in setting the dissemination strategy. This will be overseen by the PPI Governance Group, in liaison with communities/groups they are representing. Academic findings will be disseminated in peer-reviewed scientific articles and conferences, in partnership with community members. The visual outputs from the work packages will widen access and impact, and Healthwatch, community leaders and members will support a range of community engagement activities. Policy and service findings will be shared with commissioning bodies and service providers.