Everyone deserves care that works for them and their families at the end of their lives. However, we know that end of life care is not meeting the needs of people from Black, Asian and Minority Ethnic (BAME) communities, and we are in danger of failing to reach increasing numbers unless urgent steps are taken.
Research published last summer on behalf of Marie Curie and Public Health England identified a number of factors that have contributed to low levels of use of palliative and end of life care services by BAME communities. These include poor communication between healthcare professionals and patients/families and a lack of relevant training available for staff in the sector.
At the same time, the research highlighted that the end of life care needs of people from diverse backgrounds are growing, with the number of people from BAME groups aged 65 and over expected to increase to 1.3 million by 2026, compared to half a million in 2001. Another significant finding is a lower prevalence of cancer amongst BAME communities and a higher prevalence of other, chronic conditions, indicating that there is likely to be greater need for end of life care for people with non-cancer diagnoses in future.
It's clear that the end of life needs of BAME people are not adequately met or understood and this is a situation that needs to be addressed.
In response, in recent months Marie Curie has met with people from BAME communities, policy makers, practitioners and other stakeholders to discuss their experiences. These important discussions helped to inform recommendations on tackling the key issues and the charity has now launched a new report on the steps we believe health and social care commissioners, policy makers and providers in the health sector need to take.
The recommendations for commissioners and providers within the report include:
• ensuring demand for services is explored, understood and incorporated into the design of services
• reviewing how staff are trained, to ensure people have the skills and confidence to deliver services to people from all cultural backgrounds
• producing tailored information on services for different communities to make sure they know what services are available to them and that they will meet their needs
As a priority, we are asking NHS England to offer clear guidance to service commissioners on how to take into account the needs of different communities.
The UK faces some profound challenges in the coming decades which will mean that health and social care needs to be delivered in different ways. Our ageing population, changing disease profiles, workforce change and our approach to death and dying as a society are just some of the principal issues. If key decision-makers are to confront these challenges successfully, they must include a focus on the future needs of BAME communities.
A fundamental starting point for health and social care commissioners and providers is to work more closely with local communities to ensure they understand their needs. Only by doing so can they deliver the right care to the people who need it.