The Louis Dundas Centre (LDC) for Children’s Palliative Care at Great Ormond Street Hospital is believed to revolutionise the care of children with life-limiting and life-threatening conditions. “LDC is dedicated to breaking down the misconception that paediatric palliative care is only focused on end-of-life care in children. Palliative care is not about end-of-life care, it’s about living with the illness,” said Myra Bluebond-Langner, True Colours Chair in Palliative Care for Children and Young People and lead professor at the LDC Centre.
Professor Bluebond-Langner and the team at LDC are dedicated to assisting children and their families make decisions that will give the child the best quality of life, for as long as possible. “Research and practice at the LDC follows three main guidelines,” said Professor Bluebond-Langner “these are to listen to the child, to take their concerns and wishes into account, and to make sure the difficult decisions are not the child’s alone to make.” The professor and her team are dedicated to the advancement of children’s palliative, they regularly visit children’s hospices across the country, speak at events worldwide and have published a number of journal articles.
Children’s palliative care was historically considered a taboo topic amongst researchers, however the LDC in partnership with The True Colours Trust is dedicated to kick-off a revolution in research and share this with hospices and hospitals around the world. Professor Bluebond-Langner is currently leading a study on decision-making for children with high-risk tumours, which is designed to capture a day of a family’s life in treatment, in clinic, hospital and at home. “While the work is desperately sad, the real burden I feel is the importance of giving a voice to parents, children, doctors and nurses, and transforming the way to meet their needs,” said Professor Bluebond-Langner.
Professor Bluebond-Langner and her team’s ultimate goal is to perform multi-site studies and research across the United Kingdom. “We are very much at the beginning of the journey, but that’s starting to happen. We are off to a good start. Our goal is to make a tangible difference in the lives of children with life-limiting and life-threatening illnesses through an integrated programme of research, practice, education and policy,” said Professor Bluebond-Langner. To read the full article, click here.