Centre for Excellence Newsletter

The recent news from the House of Lords that the Terminally Ill Adults (End of Life) Bill will not progress into law at this stage will not come as a surprise to those closely following the passage of the ‘Assisted Dying Bill’ over the last few months.

However, our attention must now turn to what comes next. Many MPs who support the Bill have already indicated their intention to bring it back, meaning the national conversation it has generated is far from over.

While views on assisted dying remain varied and deeply personal—and LOROS remains neutral on any change in the law—the debate has shone an unprecedented spotlight on palliative and end of life care. There is clear and shared agreement that palliative care must improve, creating a rare moment of alignment across perspectives on this emotive topic.

At LOROS Centre for Excellence, we believe this represents a significant opportunity. The level of attention and engagement this issue has generated may be once in a generation. It is essential that we use this moment to champion the value of high quality palliative care and ensure that this focus translates into meaningful change.

Our role within this conversation is clear. We must continue to highlight the importance of education and workforce development, alongside the critical role of research in shaping the future of care, building a stronger evidence base to improve patient experience, outcomes, and access to services.

As the debate continues, so too must our collective efforts to ensure that palliative and end of life care remains central to the national conversation.

Linda Birt and her team of researchers at LOROS and the University of Leicester are investigating the experiences of family and friends who support people living with Motor Neurone Disease (MND) as part of the OptiMND Study.

The study aims to understand how families experience interactions with health and social care services and staff. To support this, three online surveys are currently open, giving families and professionals the opportunity to share what MND care is like in their local area.

The team are delighted to have received over 250 responses from families, patients and staff across the UK. Feedback highlights the complexity of care systems, with many families reporting that the overall system does not always work effectively, sometimes resulting in long delays for essential equipment.

However, there are also many positive experiences, with families praising individual health professionals as "amazing". Staff from a wide range of disciplines and healthcare settings have contributed to the survey, and there is strong agreement that when care teams communicate effectively, families benefit. As one response noted, "the overall family support network is very good, with close working across the various teams."

If you have experience of living with MND, supporting someone as a family member, or working as a professional, you are encouraged to take part. Please email optimnd@leicester.ac.uk to request a link to the survey.

Following strong interest in last year’s event, we are finalising registrations for the Sawubona (I see you) Conference 2026: From Present Practice to Future Directions in Providing Equitable Palliative Care, taking place virtually on Tuesday 2nd June.

The conference will bring together an inspiring range of speakers and researchers to explore equity in palliative care from multiple perspectives, including plenary input from Professor Catherine Walshe, sessions on bereavement and reducing inequity, a public health and policy keynote, and a showcase of next-generation researchers.

The day will include a mix of presentations, discussion and reflection on how we can collectively shape more equitable services. Attendance is free, but places are limited.

Bookings are now open for the LOROS Centre for Excellence education programme for July and August, offering a wide range of courses to support professional development across palliative and end of life care. Demand is already high, with some sessions oversubscribed, so early booking is strongly encouraged.