Trio who met working at Marie Curie hospice now head Wales’ only dedicated palliative care research centre which hasrecently relaunched with a further five years funding – and aims to do even more to support better end of life of people across Wales, the UK and the world.
The Marie Curie Palliative Care Research Centre at Cardiff University, which first launched in 2010, has recently received funding for a further five years from the UK’s leading end of life charity and marked the milestone with an event at the sbarc building on campus, chaired by Dr Idris Baker. Marie Curie is the largest charity funder of palliative and end of life care research in the UK.
Professor Anthony Byrne, Professor Annmarie Nelson and Professor Simon Noble
The centre headed by professors Annmarie Nelson, Simon Noble and Anthony Byrne, based at the School of Medicine at Cardiff University, has delivered groundbreaking research that has changed the way people at the end of life and their loved ones are cared for.
The three first crossed paths while working at the Marie Curie hospice in Penarth where they struck up a research partnership that has lasted for nearly two decades.
Professor Nelson started her career as an auxiliary nurse and went onto achieve an undergraduate degree and PhD and soon after this, was offered a secondment to the Wales Cancer Trials Unit and their journey towards founding the research centre truly began.
Professor Nelson said: “I was unbelievably fortunate to begin my research career with medics who were willing to work and trust me, as an auxiliary nurse, at the time. I think the small team, hospice setting and a lot of good will supported our partnership – I can’t imagine a similar trajectory in a large hospital setting.
“I’m proud that we ground our research with the patient and family perspective, including views and experiences of healthcare professionals. Patient experience has often challenged the assumptions that we make in our clinical trials about patient preference and need, and we are approached by trials units all around the country to lead this work for them.
“Putting the patient in the heart of everything, giving the patient a voice about anything that’s happening to them. It’s our job to help people to talk about what they need and want and to make sure that their services support them.”
Now, 13 years later, the centre has developed into an internationally-renowned leader of palliative care work, thanks to the passion of Professors Nelson, Noble and Byrne, and includes nine core-funded researchers, as well as students, PhDs and visiting experts.
Professor Noble, who was a registrar at the hospice when he and Professor Nelson met, said the way patient care has changed “underpins” the success of the centre.
“Our work has gone beyond Wales and research from the centre played a pivotal role in changing the law in England to ensure fairer and more equitable access to palliative care wherever you live. That is a huge thing.
“We are three very different personalities. We are constantly challenging each other. And because of our respect for each other, but also our understanding, that challenge is good. It means we do better work.
“Cicely Saunders was a rebel. Our specialty was founded by rebels. She tore up the rulebook and I think sometimes people forget this, I’m proud that we’ve done research which does challenge the zeitgeist of palliative care, and which has changed the lives of dying and bereaved people.”
One of their most successful publications together started with an unfunded research project into patient preference for thrombosis treatment, carried out by Professor Nelson and Professor Noble, which was published in the BMJ in 2006.
Since then, their work has influenced law change in England with the Health and Care Bill, and the bereavement research by Dr Emily Harrop has influenced the UK Commission on Bereavement and Welsh Government Bereavement Framework.
The thrombosis research has also led to them co-leading, with Leiden University Medical Centre (LUMC), and working with 13 other academics across Europe, on the 6 million euro Serenity project. The grant will see them develop an online app that enables shared decision making between doctors and patients regarding use of blood thinning medication.
The Deputy Chief Medical Officer for Wales, Dr Chris Jones said: “I am delighted that the Centre has been successful in securing funding from Marie Curie, enabling them to continue to produce research, in partnership with people affected by dying, death and bereavement, that has a substantial influence on end of life care in Wales and internationally.
“The Welsh government is committed to improving end of life experiences in Wales and I look forward to seeing the Centre continue to work together with the Welsh palliative care research community in ways that will drive growth in research excellence, research capability and benefit patients and the public across Wales.”
With another five years of funded research to carry out, and more researchers to meet, the professors certainly have plenty to keep them busy and challenging each other. Though, there’s still time for them to continue the discussions that started this journey and lead the way in palliative care research to support those most in need – the patients.
Marie Curie is the UK’s leading end of life charity.
The charity provides essential nursing and hospice care for people with any terminal illness, a free support line and a wealth of information and support on all aspects of dying, death, and bereavement.
It is the largest charity funder of palliative and end of life care research in the UK. Marie Curie is committed to sharing its expertise to improve quality of care and ensuring that everyone has a good end of life experience.
Marie Curie is calling for recognition and sustainable funding of end-of-life care and bereavement support.