Susan Swan, Research Nurse at Marie Curie, reflects on the role of unpaid carers in a person's palliative and end of life care.

The role of family carers in a person’s palliative and end of life care is crucial in helping terminally ill people get the day-to-day support they need for a good quality of life. But support for family carers themselves has historically been overlooked and poorly identified.

Identifying unpaid carers to ensure they receive the support they are entitled to can often be difficult which must be improved, as many do not self-identify as carers or get picked up by formal services and therefore miss out on support and benefits they may be eligible for.

During the pandemic, there has been a 40% increase in deaths at home, and Carers Scotland has reported that almost 80% of carers said the needs of the person they were caring for increased. But it is unclear if carers of terminally ill people received all the support they needed during a time when health and social care services were so stretched.

It is also estimated that an additional 400,000 people took on unpaid caring roles during the first COVID-19 lockdown, taking the total number of unpaid carers in Scotland to 1.1 million. Many are completely exhausted and are at breaking point; 66% have reported a worsening in their own mental health.

Having a live-in carer is one of the most important factors in whether someone is able to die at home or not, but family carer breakdown is the most likely factor in a person with a terminal illness being admitted to a hospital, hospice or a care home.

Evidence from Marie Curie services during the pandemic found that many terminally ill people with family carers were slow to engage with services and often much later at crisis point which caused further challenges.

Marie Curie and the University of Birmingham are seeking the experiences of bereaved family carers that looked after someone who was terminally ill at home during the pandemic for a piece of research which will explore the challenges faced by carers to inform future provision of support.

The research aims to better understand the level of support family carers accessed and received during the pandemic, and will document key learnings for the provision of effective support for family carers in future.

Demographic changes predict more people will be dying in the coming decade which is likely to see a mirrored increase in the number of family carers. Identifying gaps in care now is crucial for development of support available to family carers of terminally ill people to ensure they have full access to the physical, emotional and financial support they need.

We would like to hear the experiences of bereaved family carers who cared for a terminally ill person over 16 at home between October 2020-March 2021 and received support from Marie Curie services to inform our research.

If you would be willing to share your story, please get in touch with me at Susan.Swan@mariecurie.org.uk

Susan Swan is a Research Nurse at Marie Curie.

Resources

Marie Curie: Getting it right for carers supporting someone at end of life (November 2018) (this link will take you away from our website).

Carers UK: Carers Week 2020 Research Report – The rise in the number of unpaid carers during the coronavirus (COVID-19) outbreak (this link will take you away from our website).

Carers UK: Caring behind closed doors six months on; the continued impact of the Coronavirus pandemic on unpaid carers (October 2020) (this link will take you away from our website).

Keri Thomas: Community Palliative Care (this link will take you away from our website).

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