Engaging with communities in rural, coastal and low-income areas to understand barriers to palliative care and bereavement support: reflections on a community engagement programme in South-west England.

Background: England's South-west Peninsula is largely rural, has a high proportion of over 65s, and has areas of rural and coastal deprivation. Rural and low-income populations face inequities at end of life and little is known about the support needs of rural, coastal and low-income communities. Objectives: To understand how to foster community support for dying and grieving well, a regional, multi-sectoral research partnership developed a community engagement programme to explore experiences of seeking support, issues important to people and the community support they valued. This article shares what people told us about the role that communities can play at end of life, and reflects on learning from our process of engaging communities in conversations about dying. Design and methods: A programme of varied community engagement which included: the use of the 'Departure Lounge' installation and four focus groups with interested individuals in a range of community settings; the co-creation of a 'Community Conversation' toolkit to facilitate conversations with individuals with experience of end-of-life care and their carers with Community Builders; a focus group with Community Builders and a storytelling project with three bereaved individuals. Results: People valued community support at the end of life or in bereavement that offered connection with others, peer support without judgement, responded to their individual needs and helped them to access services. Creative methods of engagement show potential to help researchers and practitioners better understand the needs and priorities of underserved populations. Collaboration with existing community groups was key to engagement, and contextual factors influenced levels of engagement. Conclusion: Local community organizations are well placed to support people at end of life. This work highlighted the potential for partnership with palliative care and bereavement organizations, who could offer opportunities to develop people's knowledge and skills, and together generate sustainable solutions to meet local need.

The medical risks of severe anorexia nervosa during initial re-feeding and medical stabilisation.

BACKGROUND & AIMS: Objective evidence about the risks associated with anorexia nervosa and how to manage them, is limited. The aim of this study is to describe the medical risk profile, management and outcomes of a cohort of patients with severe anorexia nervosa (sAN) during medical stabilisation treatment. METHODS: Retrospective analysis of case records gathered medical risk data for a 90 day high risk period, on 65 patients with sAN admitted to two specialist services. Prospectively established definitions of medical risk variables and significant complications were applied to the data to describe the risk profiles and outcomes. RESULTS: Amongst this population with an average initial BMI of 12.8 kg/m2, 74% developed no significant medical complications. Oral re-feeding over 60 days achieved an increase in mean BMI to 14.4 kg/m2 and mean weight gain of 4 kg. No patients developed severe hypophosphatemia (<0.45 mmol/L) or any other indicators of a re-feeding syndrome. All the medical complications that arose were temporary. CONCLUSIONS: Initial re-feeding and medical stabilisation of patients with severe AN can be managed safely in specialist inpatient and community settings with slow re-feeding. Although the prevalence of complications was shown to be low, slight worsening of medical risk markers and increased incidence of complications did occur during initial re-feeding. The limited comparable published data appears to support slower rates of re-feeding, showing fewer abnormal results and complications. There is however a need for a definitive prospective multi-centre observational cohort study to investigate risks factors, and the effects of treatment on medical outcomes, in a large sample with varied rates of re-feeding.

A new service model for the treatment of severe anorexia nervosa in the community: the Anorexia Nervosa Intensive Treatment Team.

Aims and method A community intensive treatment service for severe anorexia nervosa is described. The service is multidisciplinary but driven by a focus on psychological formulation. Psychological and dietetic interventions are grounded in a process of active risk management. Evaluations of safety, cost and acceptability of the service are described. Results Patients are highly satisfied with their care. A relatively low mortality rate for such a high-risk population was observed. In-patient bed use and costs were substantially reduced. Clinical implications There is a case for greater use of intensive community care for patients with severe anorexia nervosa, as it can be acceptable to patients, relatively safe and cost less than admission.