Funded by the National Institute for Health Research (NIHR), the £108k project will build a research network comprising of representatives from organisations providing care, and from those receiving care, in Bedfordshire, Hertfordshire and Milton Keynes. It will leverage the cultural diversity of the region to evaluate and improve palliative and end-of-life care for patients from different ethnic minority groups. This will create a research agenda made for the community by the community.

Disparities in the availability and uptake of support for people in the final year of life have been highlighted by Covid-19, with ethnic minority communities consistently identified as being under-served.  However, many of the barriers to care are deep-rooted and complex, requiring insight that can best be found from within the communities themselves.

Bedfordshire, Hertfordshire and Milton Keynes are home to significant numbers of ethnically- and faith-diverse communities. This project will draw on those communities and is designed to include people whose voices are not usually heard. Mentoring and training will be provided, meaning that everyone can contribute irrespective of previous experience.

The project began at the end of February and will be conducted in three ‘phases’. ‘Phase One’ is a mapping review of all palliative and end of life care services across Bedfordshire, Hertfordshire and Milton Keynes – this will not only include NHS and hospice care but also domiciliary, well-being and practical support services, and will be used to create a searchable repository. It will also inform the building of an inclusive and representative research capability in ‘Phase Two’, while in ‘Phase Three’ the network will identify and develop research priorities. From these applications, future research funding will be made.

Organisations interested in taking part in the mapping exercise can find out more here and individuals with experiences of end of life care can contact the project’s team – based at University’s Institute for Health Research (IHR) – by emailing: KEEPNET@beds.ac.uk

Keech Hospice Care has been providing hospice care to people across the region for over 30 years and is dedicated to respecting and meeting the care wishes of adults and children from the day they receive their diagnosis through to their final year of life. It is aware that while patients who receive support from specialist care teams tend to have a better end-of-life experience, ethnic minority groups are less likely than their white British counterparts to use palliative services. Indeed, a recent tour of Keech Hospice Care’s facilities was declined by an ethnically diverse local women’s group. A local advocate explained that the women were fearful of the taboo subject of death and had questions about what to expect before they would agree to attend.

Cultural differences in attitudes to death is just one of many barriers to equality in end of life care. In addition, information about services available, language, religion, and family communication – have all been shown to contribute to the limited uptake of end-of-life care services among the UK’s ethnic minority population. However, there are many other issues and nuances to those identified that the inclusive research network will be able to identify.

Professor Gurch Randhawa, project lead and Director of IHR at the University of Bedfordshire, said: “To effectively plan care for all people, we need to improve access to services for ethnically diverse patients by understanding the barriers to their uptake of services and developing suitable training for professionals to overcome these issues.

“The NIHR has a longstanding commitment to addressing inequalities in access and uptake of healthcare, including end of life care, so we’re excited to be working in partnership with Keech Hospice Care to establish a tailored End of Life Care Research Partnership. Our findings will ultimately provide local people and service users the chance to influence the improvement of future research priorities around diverse and accessible end of life care.”

Elaine Tolliday, Clinical Director and Deputy CEO at Keech Hospice Care, added: “We are delighted to be working in partnership with the University of Bedfordshire to develop an inclusive End of Life Care Research Partnership. It will offer local statutory and voluntary sector organisations the opportunity to shape our future research priorities, with the aim of improving access to end of life care services for all communities within our region’s diverse population.”

Professor Andrew Church, Pro Vice Chancellor for Research & Innovation at the University of Bedfordshire, commented: “It’s very pleasing to be involved in this important study which will hopefully support and benefit our diverse local communities. This project will influence vital change to current end of life and palliative care guidance. I hope our University’s researchers will pave the way for future investment in improving and diversifying support and healthcare available to all members of the public.”