There is growing awareness of issues of inequity in end of life, not least the long-standing challenge of access to palliative care for people with conditions other than cancer, including people living with heart failure.
This will not be news to most readers and yet many people with heart failure who seek help with future planning, or experience high symptom burden, or want help and support for their families and carers continue to fail to benefit from the expertise of hospice and other palliative care teams.
At a conference hosted by St Christopher’s Hospice in June 2024, clinicians from cardiology, palliative and heart failure services met with each other to think together about how to improve the experience of end of life for people with heart failure. See here for a report on the event.
The conference drew, in part, on learning generated from an innovative programme of service development at St Christopher’s for people with heart failure, their families and carers.
The new services were well integrated into local cardiology and heart failure services; co-designed with patients and carers, carefully documented and evaluated. Programme inputs outputs and outcomes are exciting to note – extended (and necessary) length of engagement with palliative care prior to death; new home and hospice based services that reduced burden on hospital care; better quality of life for patients (function and symptom burden); and increased proportions of people dying in the place of their choice and at home or in care homes.
The programme saw significant numbers of people with frailty and people previously lost to follow up by heart failure and cardiac services including those with preserved ejection fraction.
The findings of this programme are shortly to be written up, but in advance of that St Christopher’s is keen to respond to an unexpected request at the conference – where participants asked for advice in setting up similar services in response to patient, family and carer requirements.
They didn’t need help to acknowledge local need or encouragement to respond. Rather, they wanted guidance about how to engage their organisations in the value of this work. They wanted help to connect with, and convince others of the value of a system wide response. They were keen to continue to network with others involved in a similar journey of development and to share their learning as they went along.
In response St Christopher’s offers a new network to which hospices, palliative care and heart failure teams or anyone else with a stake in system wide improvement for people with heart failure can join.
The network offers connection, teaching and practical support as people get their plans underway. To find out more email education@stchristophers.org.uk or visit our Heart Failure Network page to find out more.
We welcome individuals and teams to join and look forward to working with you.
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https://www.stchristophers.org.uk/transforming-heart-failure-care/
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