Jane Seymour's Speech

House of Commons event, June 30th 2008
Jane Seymour, Sue Ryder Care Professor of Palliative and End of Life Studies, University of Nottingham.

It is a great pleasure to be here this evening; thank you to Sue Ryder Care for inviting me.  I represent the Sue Ryder Care Centre for Palliative and End of Life Studies, at the University of Nottingham. The Centre was launched on January 31st 2006, following a generous private donation to the University given to enable the development of a new and comprehensive research and education programme in neglected areas of palliative and end of life care.

We are delighted to be able to use the name of Sue Ryder Care, and to be working in collaboration with them. 

The centre is one of only a small handful of research units in the UK dedicated to palliative and end of life care, and probably the only one that explicitly seeks to develop a programme of work to inform palliative and end of life care in chronic and progressive illness beyond cancer. In our relationship with Sue Ryder Care we seek to provide evidence to allow them to develop innovative services based on strong research evidence. Providing evidence for practice and policy in palliative care is challenging and this is a relatively new field of research endeavour. The Centre is supported in its work by being a partner in one of the first national supportive and palliative care collaboratives which brings together specialist researchers in the field from the Universities of Southampton, Lancaster, Liverpool, Manchester and Nottingham.

Research in palliative and end of life care has three main aims: firstly, to add to and refine the body of evidence which can contribute to new service models or interventions; secondly, to provide academically rigorous and balanced analyses of problems in palliative and end of life care (issues surrounding end of life decision making might be one example); and thirdly, to disseminate research findings so that they can be used effectively by all those affected by palliative care needs, whether these are policy makers, practitioners or patients. We have a research and education programme including involvement in a rich range externally funded research projects, seven PhD studies and a Postgraduate Programme in Palliative and End of Life Studies which takes full and part time Masters students from the UK and abroad.

One example of our current work is a project ‘Innovations and Solutions in Care Homes’ commissioned by the NHS End of Life Care Programme to find out what support care homes need to provide better end of life care to their residents. This links to another project being undertaken with colleagues from Bristol, which focuses on the extent to which frail older people are able to maintain their sense of dignity as they approach the last stage of life.  This is a prestigious project funded by the Economic and Social Research Council under a programme of work seeking to examine aspects of ageing in the 21st century.

Another example of our current work is a project dedicated to examining palliative care needs in neurological care, which involves studying the experiences of staff, patients and their families. We are grateful for partial funding of this project from the Huntington’s Disease Association. Part of this project has involved an evaluation of the work that Sue Ryder Care did in their ‘Palliative Initiatives in Neurological Care’ project. We are now collaborating on the production of a textbook for practitioners addressing a range of problems in this field.

One of our concerns is to develop sensitive ways to provide older people and those that care for them with information about advance care planning for end of life care. We have large grant from the Burdett Trust for Nursing, supported by funds from Help the Aged, which are helping us to develop work in this area. In the same strand of activity, we have recently assisted the NHS End of Life Care Programme in developing advance care planning guidance for health and social care professionals in the light of the Mental Capacity Act and have provided advice to the Department of Health as it develops the first End of Life Strategy for England.

The Centre demonstrates that it is possible to forge close links between government bodies, charities and the academic sector as new ways are sought to meet the challenges facing palliative care in the 21st century.  There have never been such great opportunities or interest in palliative and end of life care, and the needs for such care have never before been subject to so much rapid demographic and epidemiological change. Working together, we have the best chance we have ever had to begin to make a positive difference to people as they live with progressive illness and to support them as they face death.