In recognition of the persistent challenges of providing support for dying people outside of normal working hours, Marie Curie, the UK’s leading end of life charity, will be holding an out-of-hours session to explore this issue at its research conference, launching this week (Sunday 30 Jan).
The out-of-hours session will be held alongside an inspiring series of presentations and talks focusing on improving experiences for everyone affected by dying, death and bereavement. The full schedule for the virtual conference, which is free to attend and runs from Sunday 30 Jan to Friday 4 Feb, is available now and registration is open.
The charity, which is the largest charitable funder of palliative and end of life care research in the UK, will also be using the conference to launch a new research, policy and public affairs strategy which brings research, policy and practice together under four clear areas of thematic focus:
- To provide quality care and support for the mental and physical health and wellbeing of people affected by death, dying and bereavement
- To end financial insecurity at end of life, and ensure that everyone has the support they need to address their practical concerns
- To ensure that everyone affected by death and dying – including the family, friends and carers of the dying person – are supported through and beyond the end of life
- To end inequity in end of life experience by ensuring access to excellent standards of care and support for all.
Each theme of the new strategy will be the focus of a specific day of the conference, as well the out of hours session (Sun 30 Jan), and debate on the nation’s readiness to have conversations about death (Mon 31 Jan). Monday will feature the conference’s special guest, Dr Kathryn Mannix, who will join a panel discussion and present insights from her latest book.
Dr Sabine Best, Head of Research at Marie Curie, says:
“I’m looking forward to welcoming people to our conference again this year, where leading experts from our field will present work that relates to the themes of our new research, policy and public affairs strategy.
“How to better provide out of hours care was the top research priority identified by carers, patients and health and social care professionals in the Palliative and end of life care Priority Setting Partnership with the James Lind Alliance. Many people told us about the difficulties in getting the right support for their loved ones out of hours and Marie Curie has highlighted the issue in a number of research calls since the report was published. That’s why we’re kicking-off this year’s conference with a session to showcase some of the research that has been funded to address this issue head on.”
The conference will be virtual, with content running across two hour windows each day so delegates can dip into these bitesize chunks while managing other work commitments.
Register your place now for the Marie Curie Research Conference:
https://goodgrieffest.com/marie-curie-research-conference-2022/
Full Conference Programme:
| Sunday 30th January 2022 17:00-19:00
Out of hours – palliative and end of life care in the community, CHAIR: Julie Pearce |
|||||
| 17:00 | ‘In the early hours’ – the role of the Health Care Assistant out of hours | Dr Felicity Hasson, Institute of Nursing and Health Sciences Research at Ulster University | |||
| 17:30 | Lone working is lonely – experiences of Marie Curie community-based Healthcare Assistants employed during the Covid-19 pandemic | Kasia Patynowska, Marie Curie | |||
| Selected abstracts: Out of hours care | |||||
| 18:00 | Dying out of hours: no time to die | Murray…Scott Murray, Primary Palliative Care Research Group, University of Edinburgh UK | |||
| 18:15 | Developing a typology for out-of-hours community service provision for patients nearing the end of life and their families | Alice Firth, Cicely Saunders Institute, King’s College London | |||
| 18:30 | Patient and public involvement in a Delphi study to determine the most important components of community palliative care outside normal working hours (‘out-of-hours’) | Dr Joanna Goodrich, Cicely Saunders Institute, King’s College London
Peter Buckle, Cicely Saunders Institute, King’s College London and Marie Curie Research Voices Group |
|||
| 18:45 | End of life anticipatory medication: understanding the financial costs of medicines | Lloyd Morgan, University of Cambridge | |||
| Monday 31st January 2022 12:00-14:00
Are we ready for conversations about death and dying? CHAIR: Matthew Reed |
|||||
| 12:00 | Welcome | Matthew Reed, Marie Curie | |||
| 12:05 | Launch of the new Marie Curie Research, Policy and Public Affairs (RPPA) strategy | Dr Sam Royston, Marie Curie | |||
| 12:20 | Society is ready to talk about death and dying – what is stopping us? | Professor Annmarie Nelson, Marie Curie Palliative Care Research Centre at Cardiff University | |||
| 12:50 | Tender conversations | Dr Kathryn Mannix, Author of the books “Listen” and “With the End in Mind” and palliative care physician | |||
| 13:20 | Panel Discussion | Dr Kathryn Mannix, Professor Annmarie Nelson, Lucy Watts MBE (patient advocate), Matthew Reed (Chair) | |||
| Tuesday 1st February 2022 12:00-14:00
Financial insecurity at the end of life, CHAIR: Dr Sam Royston |
|||||
| 12:00 | The vicious cycle of fuel poverty and terminal illness | Craig Harrison and Mark Jackson, Marie Curie | |||
| 12:30 | Dying in the Margins: A photovoice project investigating the reasons for unequal access to home dying for people experiencing financial hardship | Dr Sam Quinn, University of Glasgow | |||
| Selected abstracts: Mixed themes | |||||
| 13:00 | Learnings from a portfolio analysis of the UK’s two largest palliative and end of life care research funders | Dr Kay Lakin, National Institute for Health Research and Dr Sabine Best, Marie Curie | |||
| 13:12 | Managing social welfare needs in life-limiting illness: is there a system response? | Dr Colette Hawkins, South Tees Hospitals NHS Foundation Trust, England | |||
| 13:24 | What Matters? Using creativity to support PPI engagement: involving palliative care patients and family carers in developing research ideas and proposals | Dr Nicola White and Dr Bella Vivat, Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London (UCL) | |||
| 13:36 | How can technology be used to support communication in palliative care beyond the COVID-19 pandemic? | Sarah Stanley, Marie Curie Hospice Liverpool | |||
| 13:48 | Motivations and Impact of the Strategic Guiding Council: An International Patient and Public Involvement Panel for Long-term Care Research During the COVID-19 Pandemic | Danielle Just, Lawrence S. Bloomberg Faculty of Nursing, University of Toronto, Canada
Bianca Tétrault, Faculty of Health Sciences, School of Nursing, McMaster University, Canada |
|||
| Wednesday 2nd February 2022 12:00-14:00
Mental health and wellbeing: new ways of supporting people affected by dying, death and bereavement, CHAIR: Professor Paddy Stone |
|||||
| 12:00 | Feasibility study of an online Acceptance and Commitment Therapy (ACT) intervention to improve staff wellbeing in palliative care settings: Preliminary findings | Dr Anne Finucane, University of Edinburgh and Marie Curie Hospice Edinburgh
Dr David Gillanders, University of Edinburgh |
|||
| 12:30 | Can expressing emotions through writing or talking really enhance wellbeing for people with terminal illness? Insights from the Let It Out (LIO) study | Daisy McInnerney, Marie Curie Palliative Care Research Department, UCL | |||
| Selected abstracts: Mental and physical health and wellbeing | |||||
| 13:00 | Virtual Reality in Palliative Care: a systematic review and meta-analysis | Dr Nicola White, Marie Curie Palliative Care Research Department, University College London | |||
| 13:12 | Using Realist Evaluation to Understand Context, Mechanisms, and Outcomes of Social Support Interventions in Hospice Day Services | Dr Natasha Mary Bradley, University of West England | |||
| 13:24 | Communication of palliative needs in discharge letters from hospice to primary care | Dr Katharine Weetman, University of Warwick | |||
| 13:36 | Getting palliative medications right: intended processes for home, hospital and hospice | Dr Sarah Yardley, University College London, Central & North West London NHS Foundation Trust and Dr Sally-Anne Francis, University College London, United Kingdom | |||
| 13:48 | Patient safety consequences of medication incidents in palliative care: mixed method analysis of incident reports | Amy Brown and Matt Wills, Division of Population Medicine, School of Medicine, Cardiff University | |||
| Thursday 3rd February 2022 12:00-14:00
Bereavement: experiences of carers, family and services, CHAIR: Idris Baker |
|||||
| 12:00 | Inequity in access to bereavement support: Perspectives and experiences of bereaved people and voluntary and community sector bereavement services in the UK | Dr Lucy Selman, University of Bristol
Dr Emily Harrop, Marie Curie Palliative Care Research Centre at Cardiff University |
|||
| 12:30 | To be confirmed | Patrick Vernon (OBE) | |||
| Selected abstracts: support for carers, family and services, including bereavement | |||||
| 13:00 | A study exploring the experiences of carers who attended ‘Living Well’ an early access support group for people living with Motor Neurone Disease | Yvonne Dunn, Marie Curie Hospice Newcastle & Northumbria University, Newcastle Upon Tyne
Dr Julie Derbyshire, Northumbria University, Newcastle Upon Tyne |
|||
| 13:12 | Knowledge requirements and unmet needs of informal caregivers of patients with end-stage kidney disease (ESKD) receiving haemodialysis | Michael Matthews, School of Nursing and Midwifery, Queen’s University, N. Ireland | |||
| 13:24 | Unable to say a proper goodbye: the lived experiences of COVID-19 bereaved | Professor Lynn Sudbury-Riley, University of Liverpool | |||
| 13:36 | Narratives of COVID: Loss, Dying, Death and Grief during COVID-19 | Dr Sharon Mallon, The Open University, Milton Keynes, England | |||
| 13:48 | Death Literacy in the UK– benchmarking levels of death literacy and validating a new measure | Dr Lisa Graham-Wisener, Centre for Improving Health-Related Quality of Life, School of Psychology, Queen’s University Belfast | |||
| Friday 4th February 2022 12:00-14:00
Challenging inequity in palliative and end of life care; CHAIR: Professor Anthony Byrne |
|||||
| 12:00 | The palliative care response to ethnic minority groups with COVID-19: equal but inequitable – an observational study | Dr Sabrina Bajwah, King’s College London | |||
| 12:30 | Improving ethnicity data in palliative care: harms, benefits and overcoming challenges | Dr Gemma Clarke, University of Leeds and Marie Curie Hospice Bradford | |||
| Selected abstracts: Challenging inequity in palliative and end of life care | |||||
| 13:00 | Palliative care for people in the UK experiencing homelessness who have no recourse to public funds | Dr Briony Hudson, Marie Curie
Dr Caroline Shulman, Pathway and University College London |
|||
| 13:12 | Palliative and End of life Care experiences of people of African and Caribbean dEscent (PEACE) during COVID-19 | Dr Felicity Dewhurst, Newcastle University and St Oswald’s Hospice
Dr Marie Poole, Newcastle University Patience Kunonga, Newcastle University |
|||
| 13:24 | Assessing frailty in people experiencing homelessness: developing and piloting a tool for hostel staff | Dr Caroline Shulman, Pathway and University College London | |||
| 13:36 | Experiences of British Muslims with palliative care needs during the COVID 19 pandemic through peer research | Dr Briony Hudson, Marie Curie
Representative from The Muslim Council of Britain |
|||
| 13:48 | “ACP, what’s that?” Exploring public perceptions of advance/anticipatory care planning in research, among citizens and online | Dr Kirsty Boyd, Primary Palliative Care Research Group, University of Edinburgh | |||
Leave a Reply