People with a terminal illness are less likely to receive palliative care if they are from an ethnic minority or marginalised group, or if they have an illness other than cancer.
A new report, out today to mark Hospice Care Week, highlights what hospice nurses are doing to widen access to palliative and end of life care.
The report, ‘Towards excellence in hospice care: widening access through nurse leadership’, based on evaluation work by Cass Centre for Charity Effectiveness, has demonstrated the creative ways hospices can work with marginalised people in end of life care.
It is based on the innovative Widening Access through Nurse Leadership project, which saw hospices across the UK reaching out to underrepresented groups, and was funded by the Burdett Trust for Nursing and managed by Help the Hospices.
Nurses from 26 hospices across the UK were given funding to establish a wide range of new services reaching out to underrepresented groups. Half of the major grants aimed to improve access for people with long-term illnesses, dementia and learning disabilities. Others focused on reaching marginalised groups such as ethnic minorities and people affected by homelessness.
Previewed yesterday at a gathering of leads from the project, the report was written by Hilary Barnard (lead author), Christine Fogg, Professor Julienne Meyer and Sue Blackmore from the Cass Business School and City University, and Marie Cooper.
Speaking at the event, Hilary Barnard said: “We believe that this has been a terrific project that has been very successful and indeed is not complete – there is more to do.”
He drew attention to a quote from a mentor of the project: ‘Nurse leadership is not just about developing relationships, but about commitment, energy, not being frightened to challenge time and time again.’
Heather Richardson, national clinical lead for Help the Hospices, introduced the day, labelling it a day of both learning and celebration.
“Hospice nurses have irrefutably shown that, with support, they have the vision and expertise to better meet the needs of everyone in their community,” Heather said.
“We now need to see more innovation and partnerships, so that the hospice sector can transform our vision of universal access to hospice care into a reality.
“It is estimated that 92,000 people who could benefit from palliative care each year do not receive it, so it is crucial to recognise what the barriers are.
“In many languages, there isn’t even a direct translation for the word ‘hospice’. Cultural beliefs and attitudes around death, dying and illness can also vary hugely and affect people’s views on palliative care.
“By engaging with under represented groups such as ethnic minorities, understanding their needs and concerns and adapting their services accordingly, hospices can help many more dying people and their families to live well.
“As a society, we must collaborate to widen access to hospice care, not only to meet the present need but also to cope with increased demand in years to come, as more of us will live longer with more complex conditions.”
Help the Hospices is now calling for more innovation and collaboration between providers and community groups, so that hospices across the UK can reach out to all those who are affected by terminal illness in their communities.