Since 2013 Synonca has generously supported the Louis Dundas Centre for Children’s Palliative Care at GOSH, a world-class centre of research, teaching and practice in palliative care for children and young people
The centre is the vision of Ruth and Bruce Dundas, out of the experience of the too short life and death of their son Louis. Their experience highlighted to them the lack of research in palliative care for children and young people, and the desperate need to share knowledge within the UK and worldwide.
Thanks to their efforts, and with the help of generous supporters like Syncona, the Louis Dundas Centre today provides vital support for families of patients with life-limiting conditions or life-threatening illnesses. The Centre’s team provides round-the-clock care for very sick children, reducing suffering by managing their symptoms, and supporting families through the most difficult circumstances. The team also drive forward an integrated program of research, policy, practice and teaching, leading to better paediatric palliative care provision across the UK and abroad.
- During 2019/20 the Louis Dundas Centre Paediatric Palliative Care team supported 558 children and their families, including 200 cancer patients.
- The team also provided expert guidance in over 2,500 additional cases across GOSH inpatient wards, in outreach settings and in hospice care.
- End of life care provision provided by the Louis Dundas Centre Paediatric Palliative Care team at GOSH is rated as ‘outstanding’ by the Care Quality Commission.
- During 2019/20 the team offered numerous training and education sessions to support the improvement of clinical practice around the world, including a palliative care foundation program for nurses in Iceland.
Julie Bayliss is Consultant Nurse and Speciality lead in Paediatric Palliative Care and Oncology Outreach within the Louis Dundas Centre at Great Ormond Street Hospital. Julie and her team provide palliative care for children and their families throughout their illness, in hospital, at home and in hospice care.
“Our service is provided by a multidisciplinary team of specialist consultants, pharmacists and nurses, and psychosocial professionals with expertise in all elements of paediatric palliative care, from highly specialist symptom management to end of life care. We provide a patient-centred pathway from diagnosis, and 24-hour support for patients, families and the professionals who care for them. The Louis Dundas Centre is a joint venture between GOSH and its research partner the UCL Great Ormond Street Institute of Child Health integrating academic research and clinical care – this means we can undertake a variety of clinical research projects which further improve care for children and young people.
“The team has grown over the last ten years with new posts thanks to support like Syncona’s. This has allowed us to reach a greater number of children, young people and their families. As a recognised specialist palliative team we are also able to support new teams starting out, providing mentoring, training and shared policy – most recently in Scotland and Australia.
“We recently recruited a specialist paediatric palliative care pharmacist to the team. Families have welcomed this specialist knowledge and enhanced access to medication required to manage complex symptoms at home. We have also been able to develop an early intervention program of Enhanced Supportive Care for high risk cancer patients at GOSH, managing the full range of symptoms experienced as their cancer progresses.
“I’m hugely grateful that we can do what we do as a team to drive forward positive change in paediatric palliative care, thanks to support like Syncona’s. Our most recent annual family experience survey demonstrated that over 90% of families would recommend the palliative care service at GOSH. One parent described ‘We feel we are not a number, but an individual family with unique needs which are being addressed at all times.’ We are so pleased with these results as they demonstrate that, above all else, our work is making a difference to children, young people and their families, in the most difficult of circumstances.”