Extract

Background and study aims People are living longer and more often die following a period of increasing illness and difficulties with their health. Palliative care is recommended for elderly people living with frailty and non-cancerous conditions to improve their quality of life and that of their carers, but how to achieve this is still uncertain. Palliative care is active holistic care that aims to relieve and avoid suffering for patients and their families, addressing physical, emotional, social and spiritual needs. Palliative care, unlike end of life or hospice care, is relevant at all stages of illness, including during curative treatment as well as at the end of life. This study aims to work with an NHS Community Trust to create and test a new service for frail elderly people with non-cancerous conditions living at home or in a care home. The new service is delivered by close working between specialists in palliative care such as Macmillan Nurses, and services provided by community workers such as community nurses and general practitioners (GPs). Who can participate? People aged 75 years or older and their carers can participate in this study. What does the study involve? The study has two parts: Part one uses information gathered from a postal survey sent to 882 bereaved relatives or carers of people aged over 75 years to find out how health services could be better provided to support older people living with frailty and when nearing the end of life. We then ask older people and carers, professionals providing health and social care, and members of voluntary groups about what people told us in the survey and the best ways to create the new service. This takes place in group discussions in January and February 2014. Part two looks at what is the best way to provide the proposed service and how the new service could benefit patients and carers. We ask 52 older people living with frailty and increasing health difficulties, and their carers, to receive either the new palliative care service or usual care provided by people like their GP. The new service is delivered by two palliative care teams working with four community nursing teams in a single Community NHS Trust. The new service involves up to three visits in the community by the specialist palliative care teams to provide an extra layer of support for frail older people and their carers at times of deterioration. Participants who receive usual care in the study are offered the new service at the study’s completion. We will see how well the new service compares with usual care in improving symptom burden, carers’ support and any differences in the services used and how much they cost. This will tell us if this new service could benefit patients and carers. What are the possible benefits and risks of participating? This study will help to inform how we should continue our work to see if this is the best way to deliver palliative care to older people in the community. There are minimal risks to participating as the study is extending an existing service to a new population group. Where is the study run from? The study is run from Sussex Community NHS Foundation Trust and takes place in four GP practices (UK) When is the study starting and how long is it expected to run for? The study started in January 2014. Part 2 will run from May 2014 until May 2016. Who is funding the study? The National Institute for Health Research (NIHR) (UK). Who is the main contact? Dr Catherine Evans [email protected] Tel: +44 (0)207 848 5579

Inclusion criteria

• Topic: Primary Care Research Network for England, Generic Health Relevance and Cross Cutting Themes; Subtopic: Not Assigned, Generic Health Relevance (all Subtopics); Disease: All Diseases, Age and ageing

Links

• ictrp
• isrctn