Louis Dundas Centre for Children's Palliative Care

ICH Front Image

The Centre supports an integrated, multidisciplinary approach to research, education and clinical practice for children and young people with life-limiting conditions and life-threatening illnesses and their families.  The Centre will play a key role in the development of an evidence-base for palliative care and in the dissemination of the results of research.

Hosted by the UCL Institute of Child Health (ICH) and Great Ormond Street Hospital (GOSH), the Centre draws upon the full range of academic and clinical resources available at these institutions and welcomes collaboration with other researchers, clinicians and providers.  Research proceeds from questions arising out of clinical experience, feeding into practice and policy.  Attention is directed across four themes:  illness experience, decision making about care and treatment, pain and symptom management and service delivery.

Palliative care as it is understood here is an active approach to the care and treatment of children with life-limiting conditions and life-threatening illnesses. It is not limited to care of children and families at the end-of-life or in the terminal phases of the illness. It is appropriate at any and all points in the lives of these children and families as well as those bereaved. Paediatric palliative care should be delivered seamlessly along with disease-directed care. It addresses the physical, emotional, social and spiritual needs of child and family.


Mission

The Louis Dundas Centre works to make a tangible difference in the lives of children with life limiting or life threatening illnesses and the lives of their families.  It does so through research which impacts both practice and policy.  Research is disseminated through publication, education and training as well as by working directly with both clinicians and institutions providing palliative and disease directed care and treatment.

We proceed with a Vision:

1.  To be a nationally and internationally recognised centre for research on children with life limiting conditions and life threatening illnesses
2.  To be a respected source of knowledge and advice for clinicians, professional bodies and policy makers
3.  To be an effective agent in and for the paediatric palliative care sector.

History

UCL / ICH and GOSH, working with the GOSH Children's Charity, successfully tendered for the establishment of the first Chair of Paediatric Palliative Care in the UK.  The decision to locate the True Colours Chair in Palliative Care for Children and Young People at UCL / ICH as the head of an integrated academic and clinical centre for children's palliative care, was further enabled by the establishment of a fund by Ruth and Bruce Dundas in memory of their son Louis to support the development of clinical and research innovation at GOSH.  The Louis Dundas Centre for Children's Palliative Care including the palliative care team at GOSH and the academic unit at ICH was established in 2010, with the appointment of Professor Myra Bluebond-Langner as the True Colours Chair in Palliative Care for Children and Young People. Professor Bluebond-Langner's early work on children with Leukaemia is regarded as making an important change in the way that all children well and ill are studied by researchers (The Private Worlds of Dying Children. Princeton: Princeton University Press, 1978).

Work on how families manage everyday life with a child with Cystic Fibrosis highlighted the strategies families use to contain the intrusion the illness makes into their lives and their impact on siblings (In the Shadow of Illness: Parents and Siblings of the Chronically Ill Child. Princeton: Princeton University Press, 1996).  Her studies of decision making for children with cancer when standard therapy has failed and cure was not likely, broke new ground in understanding parents’ approaches to care and treatment.  The results of a two centre study in the UK and the USA underlined that parents in both countries advocated the integration of palliative and treatment directed services.

The Centre now has 3 full-time research associates and is currently recruiting for a Senior Lecturer in Palliative Care for Children and Young People.  In addition we have a link research post with the Marie Curie Cancer Research Unit funded by Marie Curie Cancer Care and a Lebedev PhD student funded by Lebedev for 4 years.  We are currently seeking a second Lebedev PhD student.

We work with a number of researchers and clinicians outside of ICH and GOSH.  These activities are detailed in subsequent pages.

Page last modified on 14 mar 14 12:10