Abstract
Background: Frailty is a state of vulnerability that can lower physical and mental ability and increase the risk of disability, hospitalisation, and admission to residential care (Clegg, Young, Iliffe, et al., 2013. Lancet. 381: 752). Frailty affects around 10% of people aged over 65 (Clegg, Young, Iliffe, et al., 2013. Lancet. 381: 752), increasing to around 65% of people aged over 90 (Gale, Cooper & Sayer, 2015. Age Ageing. 44: 162), death from frailty is common. Older people with advancing frailty have complex care needs (NHS. The NHS long term plan. 2019). These needs require integrated health, social and third sector care, and a palliative care approach orientated towards living with, as well as dying from, advancing frailty (Evans, Ison, Ellis-Smith, et al., 2019. Milbank Q. 97:113). However, care is often not integrated and this can lead to poor quality end-of-life care for older people living with frailty and their families (Nicholson, Green & King, 2021. In: 17th World Congress of The European Association for Palliative Care).
Aim: To develop a cross-sectoral partnership to improve end-of-life care coordination for community-dwelling older people living with advancing frailty.
The partnership: ALLIANCE brings together three diverse regions of England: South East England, South West London and the East Midlands. Partnership members include stakeholders across the NHS, social and third sector care, local government, academic institutions, frail older people and their families.
The approach: ALLIANCE uses a co-production approach and places older people and their networks at the centre of every activity. This includes Patient and Public Involvement and Engagement systems being embedded throughout. ALLIANCE also draws on Cooke’s framework (2005. BMC Fam Pract. 6,44) for developing research capacity in care settings to support partnership members to become research-ready.
The phases:
Phase 1. Working together: Establish the Partnership, co-produce ground rules, and identify key contacts.
Phase 2. Learning together: Map baseline activity in each region regarding current clinical services and research capacity and capability.
Phase 3. Growing together: Support provider services to become research-ready and begin developing potential research questions.
Phase 4. Building together: Establish research priorities and questions and develop research proposals.
Overarching outcome: To develop co-produced, translational research proposals focused on enhancing the quality of living and dying with advancing frailty.