Afiya Trust organises consultation with BME Communities to ensure their views are incorporated in the GMC draft guidance on end of life treatment and care

The Afiya Trust in partnership with the Mary Seacole Research Centre (De Montfort University) invited members of the community as well as carers from the National BME Carers Panel to take part in a on the GMC draft guidance on end of life treatment and care. 

The draft guidance “End of life treatment and care: good practice in decision making” (published for consultation on 27 March 2009) seeks to ensure that adults and children with life-limiting conditions will receive high quality care from their doctors regardless of whether they are in hospital, at home or in another community setting.  The guidance will impact on people with long term conditions such as cancer, heart and kidney disease, sickle cell anaemia and dementia which are known to disproportionately affect Black, Asian and other minority ethnic (BAME) groups.

Although aimed at doctors, the guidance is also intended to help patients and their carers to understand how doctors should work with them, to ensure that they receive treatment when they need and want it, and that patients who are dying are treated with dignity and not subjected to treatments which they do not want or which offer no overall benefit.

The consultation session held at the Peepul Centre in Leicester offered an opportunity to members of the community to go through the sections of the guidance and offer their contribution.  Nick Nallodorai member of the National BME Carers Panel said “I am sure those who participated in the exercise would agree with me when I say that we too benefitted by hearing the views of the many who took the trouble to come to Leicester and contribute.It was, for a change, a proper consultation!”

Afiya Trust who hosts the National BME Carers Panel, the carer representation arm of the NBCCWN was very pleased to be able to contribute to this consultation.  Sharon Burton, Senior Policy Adviser for the GMC later commented: The insights we gained from this event have enriched our understanding of the needs of BAME people towards the end of life and the ways that doctors should be responding. This will help us to produce revised guidance (and related teaching/ learning materials) that can support improved end of life treatment and care for BAME groups.