Case study:

01 February 2011

Improving palliative care access for BME communities

Key points

The Marie Curie Delivering Choice Programme has been working with local health and social care bodies in Leeds to try to improve palliative care access for the city’s black and ethnic minority communities.

The initiative, which concluded in 2010, led to the appointment of a BME palliative care link worker, a resource pack for professionals and a community event as well as giving extra support to the interpreting service and raising awareness of what they do.

The Marie Curie Delivering Choice Programme, pioneered by Marie Curie Cancer Care, aims to double the number of people with a terminal illness across the UK who are cared for and are able to spend their final days at home.

The programme launched in Leeds in 2006 and worked in partnership with Leeds Primary Care Trust (Leeds PCT), Leeds Teaching Hospitals NHS Trust (LTHT), Leeds City Council – Adult Social Care, Yorkshire Ambulance Service NHS Trust, St Gemma’s Hospice and Sue Ryder Care: Wheatfields Hospice. One strand of work involved improving palliative care access for BME communities.

The first step was to appoint a BME palliative care link worker to improve access to palliative care for communities from various ethnic and religious backgrounds in Leeds. This was a two-year appointment that ended in 2009.

In initial discussions with community members from the South East Asian Community living in the Beeston and Harehills area, the issue of interpretation and translation services and appropriate cultural support for people accessing palliative care services figured prominently.

Professionals from hospital and community highlighted the fact they did not know how to access an interpreter or the best way to work with them.
Interpreters felt they did not know enough about end of life care and needed support, particularly after delivering bad news and discussing preferences for where people wanted to be cared for and die. .

The programme decided to hold a number of interactive sessions between the local interpreting service and professionals to provide more information about the local interpreting service and how to access them as well as offering the chance for a wider discussion of how to work with interpreters.

It also helped to develop a resource pack for professionals that outlined how to access an interpreter from the approved pool and guidance notes as well as top tips on working with interpreters. The pack contains communication pictures and other useful materials as well as cultural and spiritual awareness materials.

Local professionals also facilitated sessions, led by the local hospices, for small groups of interpreters providing an overview of end of life care, communication issues and how to obtain support for themselves. Interpreting staff that had received training could then be matched to requests for interpreting when discussing end of life issues.

Finally it was decided to hold a community event, entitled Part of Life is End of Life, delivered in partnership with the local BME Network, NHS Leeds Equality and Diversity Team and the Patient and Public Involvement Department. Over 200 people from BME communities and health, social care and voluntary sector organisations attended facilitated workshops which explored issues around end of life care and future improvements.

The work has now been picked up by the PCT’s PPI team and the palliative care education group is helping to facilitate interpreter training.