Current estimates suggest 1 in 4 people miss out on palliative care.1 Older people, people with non-cancer conditions, from BAME backgrounds, or with learning disabilities are some groups that face barriers to good end of life care.2 With more people living and dying from complex chronic illnesses3 and estimates that by 2051 20–30% of the UK population will be ethnic minorities4, these groups’ needs will significantly influence the growth in future palliative care demand.
2 projects in South Wales explored these barriers for people:
from BAME backgrounds;
with learning disabilities; and
from religious and non–religious backgrounds
We consulted 499 people through focus groups and interviews.
People’s understanding of palliative care is limited. Accessible and tailored communication would reduce fear and increase trust in services.
People with non–cancer conditions and from BAME backgrounds feel they are less likely to be referred to palliative care. Some reported experiencing discrimination. Less restrictive referral processes would reduce barriers.
People decline services for fear that their spiritual, cultural, or diagnosis–related needs will not be met. Staff need increased understanding of diverse needs and skills to meet them, and this inclusion should be promoted within communities.
FindingsAs palliative care need increases and demographics shift, services will support an increasingly diverse patient population. It is vital that we work in partnership across the health and social care system to reduce systemic barriers to access services. We must also recognise the value of communities, and the experience and knowledge they have, to help us improve.
Hospice UK. (2018) Hospice care in Wales 2018: supporting people closer to home. Available at: https://www.hospiceuk.org/what-we-offer/publications (Accessed 02 July 2019).
Care Quality Commission. (2016) A different ending: Addressing inequalities in end of life care. Available at: https://www.cqc.org.uk/publications/themed-work/different-ending-end-life-care-review (Accessed 02 July 2019).
Marie Curie. (2016) Palliative care and the UK nations, implications for Wales. Available at: https://www.mariecurie.org.uk/policy/publications (Accessed 02 July 2019).
Sunak R, Rajeswaran S. (2014) A Portrait of Modern Britain. Policy Exchange. Available at: https://policyexchange.org.uk/wp-content/uploads/2016/09/a-portrait-of-modern-britain.pdf (Acessed 02 July 2019).
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