UK hospices rely on volunteers to meet growing demand for palliative care

Press release published

New research published today (31 January 2014) 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.1

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 UK2 and it is calculated that their contribution reduces hospice costs by an estimated 23%.3

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.

-ENDS-

References:

 

1. Rachel Burbeck, Joe Low, Elizabeth L Sampson, Ruth Bravery, Matthew Hill, Sara Morris, Nick Ockenden, Sheila Payne, and Bridget Candy. Volunteers in Specialist Palliative Care: A Survey of Adult Services in the United Kingdom. JOURNAL OF PALLIATIVE MEDICINE. Volume 17, Number X, 2014. Online at http://online.liebertpub.com/doi/full/10.1089/jpm.2013.0157. Corresponding author: b.candy@ucl.ac.uk.

 

2. Help the Hospices. Volunteering. www.helpthehospices.org.uk/getinvolved/volunteering/. (Last accessed Nov 5 2012)

 

3. Help the Hospices. Volunteer Value: a pilot survey of UK hospices. London: Help the Hospices, 2006

 

 


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Updated

Notes to editor

Link to paper: http://online.liebertpub.com/doi/abs/10.1089/jpm.2013.0157

Survey responses breakdown: researchers contacted 290 organisations (218 voluntary sector services (hospices) and 72 statutory services; 227 (78%) in England; 30 (10%) in Scotland; 28 (10%) in Wales; and 5 (2%) in Northern Ireland). We received 233 responses resulting in evaluable data from 194 hospices and palliative care organisations, a 67% response rate. Of these, 79% (n=153) were voluntary sector services and 21% (n=41) were statutory.

The Dimbleby Marie Curie Cancer Care Research Fund: The aim of the joint Dimbleby Marie Curie Cancer Care Research Fund is to invest in research areas that are currently poorly funded nationally. Dimbleby Cancer Care and Marie Curie both seek to support research into the supportive and palliative care needs of patients who have cancer and other life-threatening diseases. Applications to the Fund are awarded in open competition and are externally peer-reviewed.

This study is part of a wider programme of research funded by The Dimbleby Marie Curie Cancer Care Research Fund including studies on meeting the specific challenges of involving volunteers in palliative care roles which require direct contact with patients or their families, and an innovative approach for volunteers to support the care of patients and their families in the last hours and days of life.
More information on this research

Marie Curie is the leading charity providing care to people with any terminal illness in their own homes or in one of its nine hospices. The charity is also a leader in research into the best ways of caring for people with a terminal illness. In addition to this the charity designs and advises on end of life services and works to ensure that the best possible care and patient choice is at the heart of commissioning end of life care across the UK. All Marie Curie services are completely free of charge. Around 70% of the charity’s income comes from donations with the balance of funds coming from the NHS.

For more information visit www.mariecurie.org.uk
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The Institute for Volunteering Research (IVR) is a world-class research, consultancy and evaluation agency which aims to improve policy and practice in all areas of volunteering. Established in 1997, IVR has been part of the National Council for Voluntary Organisations (NCVO) since 2013 and has academic partnerships with Birkbeck, University of London and Northumbria University.

The International Observatory on End of Life Care at Lancaster University undertakes high quality research, clinical studies, evaluation, education, advocacy and consultancy to improve palliative and end of life care for patients and family carers. The Observatory works closely with the local health and social care community in the North West, as well as nationally and internationally. Contact: Director: Professor Sheila Payne (s.a.payne@lancaster.ac.uk)

Lancaster University is ranked in the top 1% of universities in the world and is one of a few collegiate universities in the UK. Following the latest research assessment exercise over 90% of the research at Lancaster was found to be world leading or internationally significant with some key areas of research ranked top in the UK. www.lancs.ac.uk


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