Research: New Marie Curie programme aims to revolutionise end-of-life service design

A range of experts from palliative care, engineering, design, social sciences and public health are coming together to take a radical look at end of life care and tackle one of our generation’s greatest health and social care challenges.

This is what leading terminal illness charity, Marie Curie, has set out to do with the launch of its Design to Care Programme.

The five year £3.5m Marie Curie Design to Care Programme aims to build the future foundations for pioneering tailored care for people living with a terminal illness, that meets the increasing demand and complex palliative care needs of the UK’s ageing population. The programme’s end product will be a blueprint for a new type of palliative and end of life care service design, that is flexible enough to be rolled out anywhere in the UK for all people at end of life.

Dr Stephen Barclay (pictured), a GP and Consultant in Palliative Care from the Department of Public Health and Primary Care at the University of Cambridge, said: “More and more people are living longer – there’ll be a 50% increase of people aged over 65 by 2037 – and we will often have several illnesses and complicated care needs as we reach the end of our lives. Many of us will live away from family members who might otherwise help to care for us and there’ll be more pressure on health and social care services. So designing a new framework for end of life care is critical work. This is a fantastic opportunity to bring heads together in a rigorous process to produce a blueprint for the future of end of life care”.

Professor John Clarkson brings systems design expertise to the team from the Engineering Design Centre at the University of Cambridge. Professor Paul Chamberlain and Dr Claire Craig, from Sheffield Hallam University Art and Design Research Centre, bring their expertise in co-design; using creative techniques to draw out and refine ideas to shape the design process. The team will work with people who have experience of end of life care services including patients, carers, families, health and social care professionals and providers.

Professor Paul Chamberlain, from Sheffield Hallam University, said: “With ever increasing pressures, a paradigm shift is needed to rethink how we deliver future health and care services. No single discipline can tackle this big challenge alone. The Design to Care programme brings an exciting, diverse mix of specialists to re-imagine end of life care. Design, as a discipline, is well placed to help tackle the complex interdependencies of health where there is no single answer. Adopting a ‘co-design’ approach, working together, we will be able to give marginalised groups a voice in how we shape future palliative care”.

The programme will run in three phases:

• Scoping and designing the framework – led by researchers at the University of Cambridge and Sheffield Hallam University who will work with people with experience of using or delivering services for those with end of life care needs, including patients, carers and health and social care professionals. 

• Pilot and evaluation – the framework will be piloted in different areas of the UK to test it for feasibility, effectiveness and affordability. An independent evaluation will be carried out to make improvements where needed and increase the potential for the framework to work anywhere in the UK.

• Research and rollout – We’ll share the new framework of care we have developed and learnings from our research with policymakers, the NHS and other health and social care providers so that it can be adopted and rolled out across the UK.

Professor Bill Noble, Medical Director for Marie Curie and Programme Lead, said: “This programme will take a completely fresh look at how health services and society in general looks after people at the end of their lives. It will build on what we know about palliative care and combine the expertise of families with experience of terminal illness and academic experts in healthcare design to find new ways of caring.

“We are particularly excited to be working with such a diverse group of people who are eminent in their field and have a proven track record of improving services. We know that one in four people in the UK don’t get the care and support they need, so there is an urgency to act now.”

A programme advisory board, which includes palliative and end of life care experts, NHS and Department of Health representatives and lay representatives, will provide expert advice and guidance throughout the Programme.

Roberta Lovick, Ambassador for the Louise Hamilton Centre for Palliative Care and lay member of the advisory board, said: “I think this is one of the biggest opportunities we have to focus on what is needed to provide the best end of life care for patients and their carers and families. There is nothing worse than people witnessing bad end of life care and then living with a life of guilt from not being able to help make it as good as possible for their loved one. I’m excited to be involved in this programme and the level of expertise around the table. With all these great minds working together, we have a really good chance of getting this right.”

The Design to Care Programme will be funded by Marie Curie through fundraising. More information about the programme can be found here.