How can we address national priorities for palliative and end-of-life care?

Profs Gunn Grande and Damian Hodgson blog about our end-of-life (EoL) work and explain how we’re addressing national priorities.

The palliative and EoL care Priority Setting Partnership (PeolcPSP) was set up to identify and prioritise the key questions that remain unanswered in palliative and EoL care. This stakeholder exercise, initiated by Marie Curie Cancer Care in 2013 in partnership with the James Lind Alliance, involved approximately 30 organisations and groups, and aimed to capture the opinions of patients, family carers and health and social care professionals to develop a list of the top ten national priorities for palliative and EoL care.

We attended the priority launch event in January 2015 and were encouraged to see the close match between the priorities and what we’re already doing as part of our EoL programme of work.

How can access to palliative care services be improved for everyone regardless of where they are in the UK?

We are mapping the differences in access to care services locally and examining socioeconomic factors that explain the differences. This information will be key for improving access to palliative care services.

What information and training do carers and families need to provide the best care for their loved one who is dying?

We are addressing this through three pieces of work. Firstly, a Marie Curie Cancer Care funded study with Central Manchester Hospitals NHS Foundation Trust to ensure family carers’ support needs are assessed and addressed at discharge home from acute care. Secondly, a PhD project to facilitate implementation of a carer educational booklet intervention. Thirdly, we’re working closely with Pennine Care NHS Foundation Trust to develop educational resources for carers as part of the my health, my community programme.

How can we ensure that staff are adequately trained to deliver palliative care, no matter where the care is being delivered?

In collaboration with Macmillan, as part of the Macmillan Cancer Improvement Partnership, we’ve worked to establish the educational needs of generalist staff to support patients throughout the cancer trajectory, and are supporting the implementation of a strategy to address the gaps that were identified.

What are the best ways to determine a person’s palliative care needs, then initiate and deliver this care for patients with non-cancer diseases?

Our work encompasses patients of all diseases, and their carers where support for carers largely serves to improve support for patients. Specifically, we’re undertaking a PhD project to consider the needs of carers of patients with dementia, along with our work with Pennine Care NHS Foundation Trust on my health, my community, to develop educational resources for carers which consider carers of people with diabetes, stroke and cardiovascular disease.

What are the benefits, and best ways, of providing care in the patient’s home and how can home care be maintained as long as possible? Does good coordination of services affect this?

This is a core aim of our EoL programme. Through our pathways project we are examining death in usual place of residence (DiUPR) to shed light on the effectiveness of different areas across Greater Manchester in supporting EoL care outside of hospital and in patients’ homes. Our work to support family carers is central in making it possible to maintain care at home for as long as possible. Our work with Dimbleby Cancer Care to map the economic value of the contributions and costs of family caregiving is designed to raise awareness of the value of carers as co-workers among policy makers and service providers and improve carer support long-term.

What are the best ways to make sure there is continuity for patients at EoL in terms of the staff that they have contact with, and does this improve quality of palliative care? Would having a designated case coordinator improve this process?

This will be indirectly examined by phase two of our pathways project, which compares DiUPR outcomes with the way in which services are coordinated. We are comprehensively mapping palliative and EoL service provision to gain further insights into challenges for continuity of care and coordination.

If you would like to discuss our work around EoL and palliative care, or want to ask any questions about the content of this blog, please use the comment box below.

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