We’re grateful to the following members of the Midlands group of specialist cultural link workers for sharing this overview of their work:
- Anjana Vaja (Cultural Support Officer, LOROS Hospice)
- Gurpreet Grewal –Santini (Cultural Link Worker, Rainbows Hospice)
- Hardev Notta (South Asian Community Advisor, Acorns Hospice 1988–2019)
- Rukhsana Hanif (Cultural Link Worker, Diana Children’s Services)
Specialist Cultural Workers Support Group in Palliative Care (Midlands)
Research has shown that people from Black Asian Minority Ethnic (BAME) communities may access hospice palliative care services less often than other groups, (Worth et al 2009). Preventing factors could be lack of understanding of hospice services; accessibility; potentially the belief that the service is not appropriate for their cultural needs. BAME communities experience greater stigma attached to palliative and life-limiting conditions. Some palliative care organisations, with large diverse demographic populations, have responded by employing *Cultural Link Workers (CLWs). A group of CLWs from three hospices (one adult, two children) in partnership with NHS have met in the Midlands since 2012.
The CLWs were from the following organisations:
- Acorns Hospice (Birmingham)
- Coping with Cancer (Leicester) (left early on)
- Diana Children’s Service (Leicester)
- Leicestershire Organisation for the Relief of Suffering (LOROS)
- Rainbows Hospice for Children and Young People (Loughborough)
All these organisations had a dedicated worker working predominantly with the South Asian Community in a palliative care, terminal setting. One worker was from an adult hospice, two workers from children’s hospices, one from the NHS and one from a local cancer support charity.
These specialist posts work within the philosophy of care to provide a culturally sensitive, appropriate service in all aspects of care to adults, children, young users and their families from the many diverse communities in the areas their organisation represents.
It was recognised that people in positions of this nature may work in isolation and meeting regularly would be beneficial individually for the workers and for partnership working for the organisations.
The first meeting took place at LOROS on 28 March 2012. At the first meeting draft Terms of Reference were prepared for the workers to take back to their organisations to consider and all to agree on. The Members took responsibility, in turns, to facilitate and co-ordinate the meetings.
The Group works to achieve the following aims and objectives:
- Sharing information on resources and good practice about their individual roles in their respective workplaces.
- Raising issues, receiving feedback and supporting each other.
- Actively support families from BAME communities to access hospice and palliative care services and identify gaps in culturally appropriate service delivery.
- Raising awareness of palliative care services by engaging with faith and BAME communities in their respective geographical areas; attending community events; and having information events at their places of work.
- Promote understanding of BAME communities and varying cultural needs within the workplace. These would include language, religion, diet and any specific cultural practices.
- Provide education and resources to Health Care Professionals (HCPs), e.g. talks and presentation on culture, diversity and end of life practices in different communities, bi-lingual communication aids.
- Producing guidelines for Hospice Staff on the use of interpreters, highlighting the importance of independent language support.
- Working together with other professionals to engage and make links within education, business, health and social care.
It is not easy to statistically prove the impact of having CLWs. However it would be fair to say their roles have had a huge impact on increasing patients/families accessing palliative and hospice care services. They are a conduit in empowering families to make informed choices. By going out engaging with the community, they are in a good position to reduce stigma and myths around palliative and end of life care.
The other area they may have an impact when promoting their organisations, is encouraging people from diverse backgrounds to consider working or volunteering in a palliative care setting.
The following are quotes received from people who have received support from CLWs:
Thank goodness we were able to rely on your sensitive communication. You really eased the whole process for us. You were a great source of comfort for both of us. I could not have gone through this without your help
(Daughter of patient)
I am really grateful for the Cultural Link worker. I get a lot of support for stress relief and emotional well-being. I enjoying meeting other mums from different cultures who are in similar situations as myself.
The Asian mums group gave us a great opportunity to bond in our shared life experiences, as our cultural backgrounds were similar as this is so important to feel you belong as you spend a lot of time not fitting in with your family, friends and peers who do not have a child with complex care needs of a life-limiting prognosis.
The work of CLWs has been essential in giving confidence to patient/families and to professions of all disciplines. Communities and demographics in local population is always changing and CLWs in palliative care settings continue to respond to these changes.
*The members of this group all have different job titles. For the purpose of this article, we have given them the generic term ‘Cultural Link Workers’
Worth A, Irshad, T, Bhopal, R, Brown, D, Lawton, J, Grant, E, Murray, S, Kendall, M, Adams, J, Gardee, R and Sheikh, A (2009). Vulnerability and access to care for South Asian Sikh and Muslim patients with left limiting illnesses in Scotland: prospective longitudinal qualitative study, British Medical Journal, 338:b183 doi:10.1136/bmj.b183S