For the last 3 years, we have been working with Greenwich University, Ellenor Hospice and Diversity House which resulted in the establishment of LAPCEL (Learning Alliance Palliative Care and End of Life).
In the first year, we organised many focus group consultations as part of the University’s 1-year feasibility study on BAME health needs regarding palliative care and end of life needs. The project took place from June 2014 to June 2015 in the South East of England.
The indicative interview schedule covered the participants’ experiences, beliefs and practices surrounding the end of life and end of life care; participants’ understandings of the concepts of end of life and palliative care; experiences of accessing and using palliative care in formal healthcare settings and identifying unmet needs and obstacles to effective palliative care and end of life. The interviews also considered how palliative care could be organised and provided to better suit the needs of the participants.
Recommendations
In the light of the findings the main recommendations are:
Further training in cultural proficiency for health care professionals.
The need for greater sensitivity around communication.
Explore in more depth the role of stigma and how this shapes decisions during terminal illness and the end of life.
Targeted public health campaigns aimed at the general public and specific BME groups.
A need for more sensitivity regarding communication was apparent and the use of cultural brokers or mediators was suggested.
To summarise the participants’ views on what their ideal palliative care services would consist of the main areas for improvement were identified as:
better information on what palliative and end of life care entails. There should be public health campaigns informing the general population and campaigns targeting specific BME groups to raise awareness of available palliative care services and how to access them.
Improved cultural proficiency among health care providers. Participants stated that the relation between faith/religion and palliative care services should be taken into consideration along with gender, ethnicity, class, sexuality, disability: palliative and end of life care are not exceptions to these intersectional issues in health care services, which present challenges to equality frameworks and requires a more sensitive and nuanced approach
provision of 24-hour support services for people dying at home and the corresponding respite for their carers
In April 2017, LAPCEL organised a seminar aimed for South east Asian population to inform them about what Palliative and End of life care services are, how they can access them in case they need them, and provide information about how health providers can work better with diverse groups based on some research findings by the LAPCEL network. Our special guest was Robert Twycross, Emeritus Clinical Reader in Palliative Medicine, Oxford University.
In September 2017, we held another conference titled ‘Working with and for Eastern Europeans, Romany & Traveller Communities”- how to engage in Palliative and End of Life Care Services’ palliative care overview and an opportunity to hear user experiences. Keynote speaker Jacqueline Joyce, Health Education England, spoke on “Journeying towards the End of Life.” There was opportunity for Healthcare professionals to hear research findings plus feedback from community members.