Human Rights in End of Life Care conference

Sue Ryder hosted a free conference on human rights in end of life care on Thursday 27th June 2019 in London. The full-day event built on our first human rights conference in February 2018, exploring further how applying a human rights approach to end of life care practice can help deliver person-centred and compassionate care.

27th June 2019 Conference

Human rights in end of life care: putting theory into practice  

This year's conference provided a great opportunity to reflect and share the impact of human rights training in end of life care practice, learn about new developments in the field, ask questions to our speakers panel and network with other professionals.

Guest speakers included:

  • Dr Sanchita Hosali, Director, British Institute of Human Rights
  • Tor Butler-Cole QC, Barrister, 39 Essex Chambers
  • Richard Harding, Herbert Dunhill Chair & Director of the Centre for Global Health Palliative Care
  • Professor Jenny Kitzinger, Cardiff University, Coma & Disorders of Consciousness Research Centre

You can read more about the 2019 conference in the retrospective on our news feed.

Meet our speakers

Jacqui Graves - Human Rights Lead, Sue Ryder

Jacqui is a Registered General Nurse with knowledge and skills developed over 33 years across the NHS, charitable (Imperial Cancer Research Fund and Macmillan Cancer Support) and private investment sectors. Her passion has been cancer and end of life care for the last 20 years and she has had the privilege to support many people to live and die well.

At Sue Ryder, she is the Human Rights Lead, leading a three-year project to design, deliver and evaluate a training programme called 'What Matters to Me: a human rights approach to end of life', working closely with subject experts from the British Institute of Human Rights. The project has been funded through a grant from the Burdett Trust for Nursing.

Outside of Sue Ryder, Jacqui is also a Trustee at Penny Brohn UK, a charity who offer a holistic approach to helping people live well with cancer based on The Bristol Whole Life Approach – an approach that shows that there is more to health than what is simply going on in our bodies, and that to be resilient and to function as well as we can, we need to pay attention to our mental, emotional and spiritual health, as well as our physical health.

Human Rights Lead Jacqui Graves

Victoria Butler-Cole QC - Barrister, 39 Essex Chambers

Victoria is a barrister at 39 Essex Chambers and specialises in the law relating to health and social care, in particular mental capacity. 

She is also an advisor to the Medical Mediation Foundation and for the past six years has been a Trustee of the charity Compassion in Dying.

Victoria Butler-Cole QC

Sanchita Hosali - Director, British Institute of Human Rights

Sanchita is a recognised expert in human rights and equality law, policy and practice, with almost 20 years’ experience working both in the UK and internationally.

As Director at BIHR, Sanchita provides strategic leadership and management, overseeing operations with a lead role in policy and campaigning. Sanchita has particular expertise in addressing violence against women from a human rights perspective, and is currently a trustee of the Centre for Women’s Justice.

Sanchita also teaches Human Rights Law at Queen Mary University of London, and has been an academic and freelance researcher, led policy and strategy development within NGOs, and worked on safeguarding in pan-London Mayoral projects.

Sanchita holds an LLM in Human Rights Law and an LLB in Law.

Sanchita Hosali

Professor Richard Harding - Director, Centre for Global Health Palliative Care

Richard is Director of the Centre for Global Health Palliative Care at the Cicely Saunders Institute, King’s College London.

He is Director of the WHO Collaborating Centre, Chair of the Dunhill Medical Trust and Vice Chair of the World Hospice Palliative Care Alliance.

He leads the WHO’s global palliative care evaluation, and also leads the palliative care work streams on two Global Challenges Research Fund programmes (R4HC-MENA in the Middle East, improving care and capacity building research for refugees and displaced people, and ASSET health systems strengthening in sub-Saharan Africa).

Professor Richard Harding

Professor Jenny Kitzinger - Coma and Disorders of Consciousness Research Centre, Cardiff University

Jenny Kitzinger is sister of Polly, who was severely brain injured in a car crash in 2009.

Jenny is Professor of Communications Research at Cardiff University and co-director of the ‘Coma and Disorders of Consciousness Research Centre’, which specialises in examining social and ethical aspects of long-term vegetative and minimally conscious states.

Jenny served on the Royal College of Physicians working party on disorders of consciousness and on the Nuffield Bioethics Council working party on novel neurotechnologies. Her research, conducted with another sister, Professor Celia Kitzinger, has been published in a wide range of academic and professional journals including Palliative Medicine, Medical Ethics, Social Science and Medicine, International Journal of Mental Health and Capacity Law and the BMJ.

The sisters have also used their research to create a multimedia resource about ‘coma’ for families (http://www.healthtalk.org/peoples-experiences/nerves-brain) and developed an e-learning resource for healthcare professionals with a particular focus on decision-making about feeding tubes (http://cdoctraining.org.uk).

Professor Jenny Kitzinger

Future conferences

Please keep an eye on our website for details of upcoming events and conferences as part of our human rights programme. 

If you attended the conference and have any feedback for us, a question to ask or a human rights story to share, please email humanrights@sueryder.org.