Hospices and NHS services must capture data about religion and ethnicity much more consistently from people using their services – as glaring gaps in this data are preventing effective planning of palliative and hospice services for Muslim patients and their families – according to our new report published today.
Similarly, local authorities should record this data for people who have died, as part of the death registration process, to help monitor patterns in end of life care provision, the report says.
Bridging the Gap
Strengthening relations between hospices and Muslims of Britain was commissioned by ourselves and Hospice UK and researched and written by the Woolf Institute. It is launched today at Hospice UK’s annual conference in Liverpool. The report looked at the top five local authorities in the UK where there is a significant Muslim population (over 40 per cent). It identified the lack of data on religion and ethnicity as a key barrier in planning and monitoring services for people in Muslim communities, including both ageing Muslims and children with life-shortening conditions.
The report highlights some excellent examples of good practice by hospices to broaden access to their services, through communication, engagement with the local community and good spiritual and cultural understanding, particularly in relation to children’s hospices. For instance, parents using Acorns Children’s Hospice appreciated the emphasis that was given to spirituality and staff that ‘went the extra mile’.
However the report calls for this good practice to become much more widespread across all palliative care services. Historically, Muslims have not tended to use hospices, for a variety of reasons, including cultural differences, language barriers and a lack of understanding of hospice care. However, the report’s author, Sughra Ahmed says, demographic and cultural changes will increase demand for hospice and end of life care from Muslim communities.
The number of Muslims aged 65 and over is increasing steadily and is expected to reach 250,000 before 2030; at the same time the number of babies, children and young people with palliative care needs is growing too. In addition, the pressures of dual working parents and smaller families create practical challenges for caring for relatives at home.
Key recommendations
In addition to tackling data gaps, the report’s key recommendations include:
- Hospices and other providers should use specialist community television and radio outlets to promote their services to people from Muslim communities
- Muslim burial services and mosques should store more detailed information on a deceased person’s end of life care, including a clear record of where a death occurred
- Hospices should actively seek to communicate with local Muslim women through groups and clubs, as well as other services like maternity classes and neonatal services.
- The report also includes a framework of measures for hospices to increase their engagement with people from Muslim communities. These include inviting Muslims to become trustees and employing bilingual Muslim staff across clinical and non-clinical teams.
There are some excellent examples of hospices engaging with people from Muslim communities and providing tailored care that meets their needs, but we need to build on this. Capturing the right data is critical, so that hospices and other providers can accurately map the needs of local communities and widen access. It is also imperative that hospices develop new approaches to supporting people from Muslim communities in more creative and engaging ways.
Dr Ros Taylor, National Director for Hospice Care, at Hospice UK
Barbara Gelb OBE, Chief Executive, Together for Short Lives commented:
“This important report provides helpful insights for the children’s palliative care sector into how we can do much better in reaching out to Muslim communities. There is more to be done to raise awareness of children’s palliative care services, and better understand local populations so we can plan and deliver culturally sensitive services to all children and families.
Whilst this report highlights many examples of good practice within children’s hospice services in particular and makes recommendations for the future, the findings are certainly relevant and applicable to all services for children with life-shortening conditions, as well as to those who commission or fund these services.”
Sughra Ahmed, Programmes Manager at the Woolf Institute’s Centre for Policy and Public Education and author of the report, said:
“Unless hospices and NHS services better record, monitor and pass on information on the place of death for Muslim communities in palliative care, there is a real risk of these communities falling through the gap and not being able to access these vital services when they need them most”.
