How community palliative rehabilitation is delivered in the United Kingdom: a multiple case study

Background Community palliative rehabilitation is an important part of palliative care. Little is known about how this is delivered in practice. Aim To understand how community palliative rehabilitation is organised and delivered within different models of care in the United Kingdom (UK). Methods A contrasting mixed methods case study compared two separate models of community palliative rehabilitation in the UK: a specialist palliative care service (an independently funded hospice which relies on charitable donations), and a generalist community rehabilitation service delivered by the government-funded National Health Service (NHS). Data collection included: qualitative interviews with people with a life-limiting condition, caregivers, physiotherapists, occupational therapists, multidisciplinary therapy assistants, managers and commissioners (n = 34); survey of therapy staff (n = 46); routine service use data (n = 2966 service users); and documentary analysis of internal policy documents (n = 14). Data were analysed within each case using reflexive thematic analysis and triangulation, followed by across case analysis. Results Therapists at both sites shared a commitment to holistic, person-centred rehabilitation, but delivery of this varied. Resources were limited in each site but clinicians in the specialist palliative care site described being able to spend time with service-users developing relationships and understanding what mattered to them, whereas clinicians at the NHS site reported a lack of time to do this due to waiting list and capacity pressures. Engagement between generalist and specialist teams in a ‘layered model’ where people with a life-limiting condition access different levels of care based on clinical need was limited, contributing to therapist-reported gaps in confidence and the need for training in palliative rehabilitation. Integration was improved through co-location of different services at both sites. However, the inability to access shared records limited communication between different services at the specialist palliative care site. Access to palliative community rehabilitation appeared to be good, although early referral into the service appeared to be difficult. Formal education for people with a life-limiting condition and informal caregivers was largely absent. Differences between the two sites were driven by each service's organisational and funding context: charitable funding of hospices enabled a more flexible, proactive model at the specialist site, while NHS workforce and target pressures constrained time-dependent processes such as holistic assessment and training. Conclusions Enabling earlier referral, strengthening specialist-generalist integration, and improving information for people with a life-limiting condition and informal caregivers may help services better realise their shared aims of holistic, person-centred care.