Research Conference 2024

'Advance Care Planning' (ACP) is the process of making decisions about what kind of care you would like to have in the future, so that anyone looking after you knows what matters to you.

ACP has received significant research funding in the last 8 years. Join this session to hear what the research says about it, and listen to our panel of experts discuss the topic further.

00:00 - Welcome and opening of the conference - Matthew Reed (Marie Curie)

03:30 - Keynote: Back to the Future; care planning in palliative care - Dr Kirsty Boyd (Edinburgh)

31:00 - Advance Care Planning: research funding since 2015 - Jodie Crooks & Charlotte Simpson-Greene (Marie Curie)

46:05 - Innovative approaches to end of life care planning – learning from people with learning disabilities - Dr Andrea Bruun (Kingston University)

1:00:01 - Panel discussion on ACP - Chair: Clare Fuller (Advance Care Planning Advocate); Panellists: Dr Kirsty Boyd, Professor Erica Borgstrom (The Open University, Professor Sonja McIlfatrick (Ulster University)

* We understand that content relating to palliative and end of life care can be upsetting. If you need support, our Support Line is available on 0800 090 2309 from 8am-6pm Monday to Friday, and 11am-5pm on Saturdays. For information on support outside of these hours, please visit: https://www.mariecurie.org.uk/help/support/marie-curie-support-line/out-of-hours-help. There is also information and support available on our website: https://www.mariecurie.org.uk/help/support.*

Relevant links from the session

This session will cover some of the gaps in support or training of health and social care professionals working in palliative and end of life care, and some ways in which staff could be better supported in their role.

**Anyone is welcome to watch, but it may be of particular relevance to people working in the palliative and end of life care sector.**

00:00 - Welcome - Dr John MacArtney, chair

00:45 - Embedding Online Supportive Conversations and Reflective Sessions (OSCaRS) to support care home staff with end-of-life care (selected abstract) - Dr Julie Watson (Marie Curie Care Home Programme, Scotland)

18:36 - Wellbeing of lone working Healthcare Assistants and its impact on staff retention in hospice care at home services (selected abstract) - Katarzyna Patynowska (Marie Curie, Northern Ireland)

32:58 - Hospice Staff Ongoing Experiences of Living with Covid-19 in a Palliative Care Context (selected abstract) - Dr John MacArtney (Marie Curie & University of Warwick) & Rebecca Evans (University of Warwick)

* We understand that content relating to palliative and end of life care can be upsetting. If you need support, our Support Line is available on 0800 090 2309 from 8am-6pm Monday to Friday, and 11am-5pm on Saturdays. For information on support outside of these hours, please visit: https://www.mariecurie.org.uk/help/support/marie-curie-support-line/out-of-hours-help. There is also information and support available on our website: https://www.mariecurie.org.uk/help/support.*

Relevant links from the session

Join this session to hear about innovation in services – best practice, impact and evaluation.

**Anyone is welcome to watch, but it may be of particular relevance to people involved with the planning or delivery of health and social care services.**

00:00 - Welcome - Dr Sarah Holmes, chair

01:20 - Reactive Emergency Assessment and Community Team (REACT) - Lucy Wyld & Clare Rayment (Marie Curie & Bradford Teaching Hospitals NHS Foundation)

25:00 - Accessing and administering anticipatory medications at the end of life: a qualitative study of key stakeholders' perspectives (selected abstract) - Matthew Bernstein (University of Cambridge)

39:20 - Who needs care planning: Implementing a structured future care planning intervention in Scottish Primary Care (selected abstract) - Dr Kirsty Boyd (University of Edinburgh)

* We understand that content relating to palliative and end of life care can be upsetting. If you need support, our Support Line is available on 0800 090 2309 from 8am-6pm Monday to Friday, and 11am-5pm on Saturdays. For information on support outside of these hours, please visit: https://www.mariecurie.org.uk/help/support/marie-curie-support-line/out-of-hours-help. There is also information and support available on our website: https://www.mariecurie.org.uk/help/support.*

Relevant links from the session

Family and friends who are caring for someone with a terminal illness often go unsupported. Yet supporting carers could make a huge difference to the pre and post bereavement they will face and could help reduce the pressures they experience caring for their loved one.

This session will showcase ways to support people who have caring responsibilities, as well as those who are bereaved.

00:00 - Welcome to day two of the conference - Richard Meade

03:15 - The Carer Support Needs Assessment Tool Intervention (CSNAT-I) and launch of Marie Curie CSNAT-I ECHO Network - Professor Gunn Grande (University of Manchester) & Dr Gail Ewing (University of Cambridge)

33:48 - Evaluation of the school's bereavement programme in Northern Ireland - Joan McEwan & Austin Orr (Marie Curie)

1:03:32 - "I feel like I should be over this by now": the long-term grief experiences and support needs of people bereaved during the Covid-19 pandemic in the UK (selected abstract) - Dr Silvia Goss & Dr Emily Harrop (Marie Curie Palliative Care Research Centre & Cardiff University)

1:20:14 - Piloting a novel Carer Support Nurse role (selected abstract) - Professor Morag Farquhar (University of East Anglia)

1:37:10 - From research to resource: the development of the Grief Support Guide (selected abstract) - Dr Emily Harrop (Marie Curie Palliative Care Research Centre, Cardiff)

* We understand that content relating to palliative and end of life care can be upsetting. If you need support, our Support Line is available on 0800 090 2309 from 8am-6pm Monday to Friday, and 11am-5pm on Saturdays. For information on support outside of these hours, please visit: https://www.mariecurie.org.uk/help/support/marie-curie-support-line/out-of-hours-help. There is also information and support available on our website: https://www.mariecurie.org.uk/help/support.*

Relevant links from the session

Calls to emergency services are increasing for people at the end of life, likely in part because services in the community are under pressure. Yet until recently there has been little research in this area. Join this session to learn more about the experiences of paramedics providing end of life care and some of the complex issues they face. This session will reflect on how paramedics could be better supported in their role.

00:00: Welcome - Jackie Bell (Marie Curie)

01:03 - Paramedic practices and experiences of providing end of life care: An England-wide survey - Dr Natasha Campling (University of Southampton)

22:04 - Impact of paramedics carrying 'just in case' end of life care medication (title tbc) - Edward O'Brian (Welsh Ambulance Services NHS Trust)

43:20 - A Review of End of Life Medication Administration by Ambulance Clinicians (selected abstract) - Keri Fickling (Scottish Ambulance Service)

* We understand that content relating to palliative and end of life care can be upsetting. If you need support, our Support Line is available on 0800 090 2309 from 8am-6pm Monday to Friday, and 11am-5pm on Saturdays. For information on support outside of these hours, please visit: https://www.mariecurie.org.uk/help/support/marie-curie-support-line/out-of-hours-help. There is also information and support available on our website: https://www.mariecurie.org.uk/help/support.*

Relevant links from the session

Join this session to learn about how to enable and support research in hospice and community services.

**Anyone is welcome to watch, but it may be of particular relevance to research-interested staff working in hospices and other palliative and end of life care services.**

00:00 - Welcome (Sabine Best)

00:30 - Let's talk about research! A new resource. - Professor Catherine Walshe (Lancaster University)

19:25 - Change is coming....How research in hospices will be supported - Tara Maitland & Professor Christina Faull (LOROS Hospice)

31:52 - Marie Curie support for hospice research - Dr Emma Carduff (Marie Curie)

* We understand that content relating to palliative and end of life care can be upsetting. If you need support, our Support Line is available on 0800 090 2309 from 8am-6pm Monday to Friday, and 11am-5pm on Saturdays. For information on support outside of these hours, please visit: https://www.mariecurie.org.uk/help/support/marie-curie-support-line/out-of-hours-help. There is also information and support available on our website: https://www.mariecurie.org.uk/help/support.*

Relevant links from the session  

Everyone should have the best possible end of life experience, whatever their culture, race, religion, sex, gender, sexuality, or disability. Yet too many people are going without the care that they need and deserve, in some cases made worse by their geographical location, financial circumstance, or their protected characteristics.

Part of this session will focus on pain management for people from ethnic minority backgrounds as well as showcase research addressing inequities submitted as abstracts.

00:00 - Welcome to day three of the conference - Professor Richard Harding

00:56 - Are we all equal when it comes to the assessment and management of pain at the end of life? - Professor Jonathan Koffman (Hull York Medical School)

37:02 - Improving experiences of pain and pain management for people from South Asian communities in Leeds and Bradford UK: A qualitative interview study - Dr Gemma Clarke (Marie Curie & University of Leeds) & Ruby Bhatti, OBE DL (Independent Patient and Public Involvement Representative, Bradford)

1:02:13 - Intersection between ethnicity and area-based deprivation and the association with place of death: evidence from the UK Census (selected abstract) - Dr Joanna Davies (King's College London)

1:14:17- Evaluating the Impact of Healthcare Policies on the Delivery of Palliative and End-of-Life Care in the UK (selected abstract) - Laima Khan (University of Oxford)

1:30:47 - The experiences of family carers looking after older people at home towards the end-of-life in rural and remote locations (selected abstract) - Dr Caroline Mogan (Liverpool John Moores University)

* We understand that content relating to palliative and end of life care can be upsetting. If you need support, our Support Line is available on 0800 090 2309 from 8am-6pm Monday to Friday, and 11am-5pm on Saturdays. For information on support outside of these hours, please visit: https://www.mariecurie.org.uk/help/support/marie-curie-support-line/out-of-hours-help. There is also information and support available on our website: https://www.mariecurie.org.uk/help/support.*

Relevant links from the session

This session will look at how digital health has been applied or could be applied to palliative and end of life care now and in the future.

00:00 - Welcome - Professor Mark Taubert, chair (Cardiff University and Velindre University NHS Trust)

01:12 - Practical examples of using technology in clinical palliative care setting - Professor Mark Taubert

15:30 - My Churchill Fellowship: Artificial intelligence and design in palliative care - implications for practice - Dr Amara Nwosu (Marie Curie & Lancaster University)

38:45 - A rapid review of the evidence on internet-based interventions for bereavement support: Preliminary findings (selected abstract) - Dr Anne Finucane (Marie Curie & University of Edinburgh)

* We understand that content relating to palliative and end of life care can be upsetting. If you need support, our Support Line is available on 0800 090 2309 from 8am-6pm Monday to Friday, and 11am-5pm on Saturdays. For information on support outside of these hours, please visit: https://www.mariecurie.org.uk/help/support/marie-curie-support-line/out-of-hours-help. There is also information and support available on our website: https://www.mariecurie.org.uk/help/support.*

Relevant links from the session  

Obtaining funding can be an essential step in the research journey. However, it can be a challenging and overwhelming task to complete. In this session, you will hear from Donna Wakefield, Emma Carduff, Nicola White and Stephen Mason from the Palliative Care Research Society. They will discuss their experiences, share tips, resources and discuss the ups and downs of applying for funding. By the end of the session, you should feel more confident in where to start to apply for your own funding.

**Anyone is welcome to watch, but particularly relevant for early-mid stage researchers and professionals who are interested in getting more involved with research.**

00:00 - Welcome & why get involved in research - Dr Emma Carduff, Chair (Marie Curie)

05:24 - Donna's experience - Donna Wakefield (North Tees and Hartlepool NHS Foundation Trust)

15:00 - Nicola's experience - Dr Nicola White (Marie Curie Palliative Care Research Department, UCL)

26:40 - NIHR Personal Awards - Professor Ruth Endacott (NIHR)

36:00 - The PCRS - Dr Stephen Mason (University of Liverpool)

* We understand that content relating to palliative and end of life care can be upsetting. If you need support, our Support Line is available on 0800 090 2309 from 8am-6pm Monday to Friday, and 11am-5pm on Saturdays. For information on support outside of these hours, please visit: https://www.mariecurie.org.uk/help/support/marie-curie-support-line/out-of-hours-help. There is also information and support available on our website: https://www.mariecurie.org.uk/help/support.*

Relevant links from the session  

Professor Paddy Stone is the Marie Curie Chair of Palliative and End of Life Care and the Head of the Marie Curie Palliative Care Research Department at UCL. Paddy will be retiring in 2024, and this session will celebrate his contributions to palliative and end of life care research, including in the fields of prognostication, cancer related fatigue and end-of-life care. We will also have abstract presentations covering other aspects of physical health and wellbeing.

00:00 - Welcome to day four of the conference - Professor Anthony Byrne

02:22 - Reflections on a career in palliative medicine research - Professor Paddy Stone (UCL)

30:00 - Fatigue Research 2007 to date - Dr Ollie Minton (University Hospitals Sussex NHS Foundation Trust)

44:00 - Teaching the unteachable: just how do doctors recognise when someone is dying - Dr Nicola White (UCL)

1:02:10 - Tributes to Paddy Stone from past and present colleagues - Professor Glyn Lewis, Dr Sam Royston, Dr Adrian Tookman, Dr Ollie Minton, Dr Nicola White

1:22:40 - Clinician's experiences and attitudes towards shared decision-making for deprescribing antithrombotic therapy in patients with cancer at the end of life (selected abstract) - Nikhil Shah (Cardiff University)

1:38:40 - The importance of relational care outside normal working hours: experiences of patients and family carers, and healthcare professionals (selected abstract) - Joanna Goodrich (King's College London)

* We understand that content relating to palliative and end of life care can be upsetting. If you need support, our Support Line is available on 0800 090 2309 from 8am-6pm Monday to Friday, and 11am-5pm on Saturdays. For information on support outside of these hours, please visit: https://www.mariecurie.org.uk/help/support/marie-curie-support-line/out-of-hours-help. There is also information and support available on our website: https://www.mariecurie.org.uk/help/support.*

Relevant links from the session  

People affected by death, dying or bereavement offer valuable knowledge and expertise based on their lived experience. In this session we will hear from both researchers and people with lived experience. We will hear about recommendations for involving people with lived experience, including those with experience of homelessness.

00:00 - Welcome - Dr Briony Hudson, chair (Marie Curie)

01:25 - The TIFFIN recommendations for co-producing palliative and end of life care research with individuals with lived experience of homelessness - Jodie Crooks (Marie Curie)

17:00 - The need for disease-specific end-of-life care approaches for terminal brain tumours - Dr Florien Boele (University of Leeds) and Peter Buckle (Patient and Public Involvement Representative)

35:00 - We MUST be involved! 4 people with learning disabilities explain how they can be involved in end of life research – and why this matters - Video by Richard Keagan-Bull, Leon Jordan, Amanda Cresswell, David Jeffrey, Andrea Bruun and Irene Tuffrey-Wijne (Kingston University)

42:30 - Q & A with speakers

* We understand that content relating to palliative and end of life care can be upsetting. If you need support, our Support Line is available on 0800 090 2309 from 8am-6pm Monday to Friday, and 11am-5pm on Saturdays. For information on support outside of these hours, please visit: https://www.mariecurie.org.uk/help/support/marie-curie-support-line/out-of-hours-help. There is also information and support available on our website: https://www.mariecurie.org.uk/help/support.*

Relevant links from the session  

People with a terminal illness and their loved ones commonly experience anxiety, uncertainty and anticipatory grief. This session will look at how people with a terminal illness and their loved ones could be better supported.

00:00 - Welcome - Dr Anne Finucane (chair)

01:18 - Psychological interventions for patients with advanced disease and at the end-of-life - Professor Gary Rodin (University of Toronto & Princess Margaret Cancer Centre, Toronto)

29:41 - People with severe mental illness - a marginalised population with special palliative care needs (selected abstract) - Professor (Dr) Julia Verne (National Mental Health Intelligence Network, Office for Health Improvement and Disparities, Department of Health and Social Care)

48:10 - Mental health and wellbeing towards the end-of-life Research and Knowledge Exchange Network - Dr Anne Finucane (Marie Curie)

* We understand that content relating to palliative and end of life care can be upsetting. If you need support, our Support Line is available on 0800 090 2309 from 8am-6pm Monday to Friday, and 11am-5pm on Saturdays. For information on support outside of these hours, please visit: https://www.mariecurie.org.uk/help/support/marie-curie-support-line/out-of-hours-help. There is also information and support available on our website: https://www.mariecurie.org.uk/help/support.*

Relevant links from the session

It shouldn't be harder to make ends meet at the end of your life, yet we know that this is not always the case. From higher energy bills due to the medical need to stay warm and power medical equipment, to struggling to continue working especially without adequate policies in the workplace. Furthermore, people with lower socioeconomic position are more likely to die in hospital which, for many, is not their preference.

This session will explore these issues and look at potential ways that terminally ill people could be better supported financially.

00:00 - Welcome to day five of the conference - Dr Sam Royston

01:35 - Why are people with lower socioeconomic position more likely to die in hospital? - Dr Joanna Davies (King's College London)

29:55 - Taking the Temperature of NG6: A review of how the NICE Guideline NG6 is delivering warm and safe homes, and what more can be done for vulnerable and terminally ill people - Dr Danielle Butler (National Energy Action) and Leah Steadman (Marie Curie)

1:01:20 - Supporting employees with terminal illness: developing workplace policies and guidance - Joanne Smithson (What Works Centre for Wellbeing) and Izzie Baverstock-Poppy (Marie Curie)

1:27:20 - Presentation of prizes: the Susie Wilkinson Award, the Joanna Mugridge Award, the Clair Fisher Research Impact Award & the Tammy Prescott Patient and Public Involvement Award  - Dr Sam Royston (Marie Curie)

* We understand that content relating to palliative and end of life care can be upsetting. If you need support, our Support Line is available on 0800 090 2309 from 8am-6pm Monday to Friday, and 11am-5pm on Saturdays. For information on support outside of these hours, please visit: https://www.mariecurie.org.uk/help/support/marie-curie-support-line/out-of-hours-help. There is also information and support available on our website: https://www.mariecurie.org.uk/help/support.*

Relevant links from the session  

Palliative rehabilitation involves enabling people with a terminal illness to achieve their maximum potential physically, psychologically and socially, so that they can enjoy the best quality of life possible until they die.

Join this session to hear some of the latest evidence and thinking around this topic.

00:00 - Welcome - Dr Juliet Spiller

01:25 - Rehabilitation in Palliative Care: What, Where, When, Why and How? - Professor Matthew Maddocks (King's College London)

38:30 - Body-mind interventions (BMi) for breathlessness-related distress (BrD) in advanced disease: a realist review (abstract presentation) - Kate Binnie (Wolfson Palliative Care Research Centre, Hull York Medical School)

* We understand that content relating to palliative and end of life care can be upsetting. If you need support, our Support Line is available on 0800 090 2309 from 8am-6pm Monday to Friday, and 11am-5pm on Saturdays. For information on support outside of these hours, please visit: https://www.mariecurie.org.uk/help/support/marie-curie-support-line/out-of-hours-help. There is also information and support available on our website: https://www.mariecurie.org.uk/help/support.*

Relevant links from the session