New research from researchers at the Marie Curie Palliative Care Research Unit, University College London Medical School, Institute for Volunteering Research and International Observatory on End of Life Care Lancaster University reveals the true extent to which UK hospices rely on unpaid volunteers to meet the growing demand for palliative care.
The new study, published in the Journal of Palliative Medicine, provides the most comprehensive picture to date of volunteer activity in specialist adult palliative care in the UK.
There are more than 100,000 hospice volunteers in the UK1 and it is calculated that their contribution reduces hospice costs by an estimated 23%2.
The research team conducted a comprehensive survey of volunteer activity in the UK – gathering data from two-thirds (194) of the UK’s adult hospices and specialist palliative care services who involve volunteers. Of these 79% were voluntary (charitable) sector services and 21% were statutory.
It found that volunteers were commonly involved in day care (where non-resident patients receive care services available to inpatients including some medical care) and bereavement services but also entirely ran some complementary, beauty therapy/hairdressing and pastoral/faith-based care services.
Researchers also found that the voluntary sector services had more volunteers overall, and more volunteers in direct contact with patients and families than statutory services. The voluntary sector services were more likely to involve volunteers (offering professional skills) in day care, bereavement services and home-based care.
Other main findings
- volunteers were most commonly involved in day care and bereavement services. They also gave emotional care to patients and, in at least half of the settings, to patients’ families
- in 68% of services volunteers were involved in counselling, which is a highly skilled and emotionally demanding role
- in nearly half of organisations where volunteers were involved with inpatients, volunteers sat with patients in the last hours of life – demonstrating how much volunteers contribute to core end-of-life care
- in nearly a third of organisations volunteers also provided help in patients’ homes, such as running errands or providing a ‘listening ear’
- creative/diversional therapies, beauty therapy/hairdressing complementary/alternative therapies, and pastoral/faith-based services were most commonly run entirely by volunteers – and free of charge
- volunteers offered their professional skills for free – mostly beauty therapists/hairdressers, complementary therapists and spiritual care workers
Bridget Candy, researcher and principal investigator of the project at the Marie Curie Palliative Care Research Unit at UCL, said: “Our comprehensive survey shows that volunteers are involved intrinsically and extensively in specialist adult palliative services. We should acknowledge their immense contribution and ensure that their support needs are well understood.”
Sheila Woodhams, a volunteer at Marie Curie Hospice, Solihull, said: “Volunteering at the local Marie Curie hospice once a week gives me a real sense of achievement. Helping with different activities in the day care centre and gaining the trust of patients so that they can talk about their concerns is a truly humbling and rewarding experience. It can be quite upsetting at times, but I know my help and support is really appreciated by patients and their families.”
Ruth Bravery, Director of Community Involvement at Marie Curie and co-author, said: “The demand for specialist palliative care is increasing but funding is limited. It is clear from this research that volunteers add real value and benefit to ensuring the best possible experience for patients and their families who require palliative care support. As a leading hospice charitable provider, we need to ensure that their contributions are fully recognised and seen as an essential fabric of hospice and palliative care services.”
This study was funded by the Dimbleby Marie Curie Cancer Care Research Fund grant.
1. Help the Hospices. Volunteering. www.helpthehospices.org.uk/getinvolved/volunteering/. (Last accessed Nov 5 2012)
2. Help the Hospices. Volunteer Value: a pilot survey of UK hospices. London: Help the Hospices, 2006
Volunteers in Specialist Palliative Care: A Survey of Adult Services in the United Kingdom, Authors: Burbeck Rachel, Low Joe, Sampson Elizabeth L, Bravery Ruth, Hill Matthew, Morris Sara, Ockenden Nick, Payne Sheila, and Candy Bridget, Journal of Palliative Medicine – doi:10.1089/jpm.2013.0157