The palliative care research community has responded quickly to COVID-19. However, the experiences, concerns and research priorities of people affected by serious illness and their families remain unknown. Lucy Pocock was part of a team, lead by colleagues at the Cicely Saunder Institute at King's College London, who conducted a rapid public consultation from March 16th to April 15th, 2020 to understand the emerging experiences, concerns and research priorities of people affected by serious illness, in relation to palliative care, during the COVID-19 pandemic.
Using virtual methods (online forum, email, telephone) we consulted members of patient and public involvement networks across four palliative care research groups in England, including members of our own Bristol Palliative and End of Life Care PPI Advisory Panel. These networks include individuals living with serious illness, and their family members and/or informal carers. Responses were synthesised into categories by a team including people with clinical, academic and lived experience relevant to palliative care.
We received responses from 44 patient and public involvement contributors. Their concerns and research priorities centred around four key areas: reduced professional support; strains on informal care networks; risk of reduced quality of care; and increased loss, grief and bereavement. Responses described anxieties around disrupted services, and concerns for how existing health inequalities may be exacerbated. Issues around increasing informal care responsibilities, as well as losing informal support due to isolation measures, were also raised. Contributors had questions around how individualised and holistic care would be maintained, and how care may be rationed with rising demand for healthcare. Many also felt that bereavement support should be prioritised.
Research priorities to innovate access to palliative care during a pandemic and beyond should address: ensuring timely professional support with increasing service demand; sustaining informal care networks under increasing strain; ways of monitoring and detecting compromised outcomes of care; and bereavement support responsive to increasing loss and grief. It is essential that, going forward, people affected by serious illness can continue to contribute to the palliative care response to COVID-19.
You can read the report here.
The Palliative and End of Life Care (PEoLC) Research Group is delighted to announce that funding has been awarded by the Wellcome Trust for a new festival to help people talk, think and learn about grief in Bristol next May. The festival, Good Grief, Bristol, is a collaboration between the University of Bristol and charities, bereavement services and cultural venues across the city. The project is led by the University of Bristol, with partners including St Peter’s Hospice, Creative Youth Network, Bristol Museum & Art Gallery, Arnos Vale cemetery, Off The Record and Winston’s Wish.
The festival, taking place during Dying Matters Awareness Week, will involve dozens of scheduled events across the city - including a full weekend of events at Colston Hall, a conference at the University of Bristol and film screenings at Watershed. The initial programme will be announced in late January. Good Grief is now welcoming applications from organisations and individuals who would like to host community events as part of the festival. Funding is available to support such community events, and interested organisations can find out more here. The closing date for applications is January 31st.
“Grief affects everyone, yet people often don’t know how to react when someone is bereaved, and those grieving can feel isolated,” said Festival Founder, Dr Lucy Selman of the University of Bristol’s Palliative and End of Life Care Research Group. “We’re thrilled to bring Good Grief, Bristol to the city. The festival will provide many opportunities to explore this universal human experience, as well as offering unique ways to share stories and remember those who have died.” To find out more visit www.goodgriefbristol.com.
Public engagement funding success
The Palliative and End of Life Care (PEoLC) Research Group is delighted to have been awarded funding by the Elizabeth Blackwell Institute’s seed fund for public engagement with health research.
In collaboration with Bristol Black Carers and St Peter’s Hospice, we will be consulting with community members to explore the barriers experienced by black and minority ethnic (BAME) groups in accessing end of life care, advance care planning and bereavement support. The consultation meetings will also inform our future research and public engagement projects, with community members invited to join an ongoing patient and public advisory panel.
For more information, contact email@example.com.
Local press coverage featuring Lucy Pocock and Kathryn Mannix
Following our successful event at Arnos Vale Cemetery, Bristol Live has published a feature about death and dying with quotes from our co-lead, Dr Lucy Pocock, and Dr Kathryn Mannix, our recent guest speaker.
Death and dying in an age of denial - 13th June 2019, Arnos Vale Cemetery
Members of the public, local clinicians and academics and Councillor Jos Clark, the Lord Mayor of Bristol, were joined this week by one of the country's bestselling authors to encourage people in Bristol to be braver when it comes to discussing death.
The Palliative and End of Life Care Research Group at the University of Bristol presented the event, an evening discussion of death and dying, featuring Dr Kathryn Mannix, bestselling author of 'With The End In Mind' at Arnos Vale Cemetery on Thursday 13th June. The event was also an opportunity to hear more about Patient and Public Involvement (PPI) in research and anyone who is interested in steering research in this area is invited to contact us.
Read more about the event here.
South West Palliative and End of Life Care Research Network meeting - 13th June 2019, University of Bristol
On 13th June 40 researchers from across the South West came together to share ideas for new research, and findings from completed work, in the area of palliative and end of life care. We were also delighted to host Cllr Jos Clark, the newly inducted Lord Mayor of Bristol (and a former socal worker), who has an interest in care at the end of life.
Presentations were heard from Dr Antonia Beringer (UWE) on advance care planning in children, Dr Lucy Plumb (University of Bristol) on conservative care for children with end-stage renal disease, Dr George Kimpton (University of Bristol) on the impact of cognitive impairment on discrete choice experiments in adults with end-stage renal disease, and Dr Jimmy Hay (University of Bristol) on the portrayal of grief in film.
To follow the event on Twitter search for #peolcresearchgroupsw or click here.
EBI Grant Funding
We were recently granted funding from the Bioethics, Biolaw and Biosociety Research Strand of the Elizabeth Blackwell Institute (EBI), funded by the Wellcome Trust, University of Bristol, to hold three meetings in 2019.
The next will be a research meeting on 13th June 2019 on the theme of ‘Avoiding futile treatment while maintaining hope’, followed by an evening public lecture by author Kathryn Mannix at Arnos Vale Cemetery.
The scheme funded eight additional research activities on the theme of Health, Ageing and Dying Well:
Dialysis decisions - getting the right balance – Barnaby Hole
Identifying research directions in palliative surgery in oncology – Charlotte Chamberlain
Everyday ethics: Identifying the ethical challenges faced by UK palliative care practitioners, patients and carers – Guy Schofield
Exploring the forms and function of death talk and loss talk in an age of longevity – Karen West
(Re)Thinking trans healthcare: Bridging the gap between policy, practitioner and patient – Peter Dunne
For more information on the projects funded by EBI, please contact the named leads linked above.