Keech launches research to help ethnic minority groups with end of life care

Keech Hospice Care in Luton has launched a 12-month ‘End of Life Care Research Partnership’ in collaboration with the University of Bedfordshire, aiming to identify barriers and improve access to palliative care amongst ethnic minority populations.

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.

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’. 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: [email protected]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.

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.”