Innovative end-of-life role made possible after charitable support
An innovative clinical role which cares for children with life-limiting conditions has been introduced permanently at our hospital.
The role of Consultant in Paediatric Palliative Medicine, based at Birmingham Children’s Hospital, has been previously funded by charity Molly Olly’s Wishes as part of a three-year-project. After demonstrating the effectiveness of the role, and significantly changing the experience for all those who have benefitted from the service, it will now be funded centrally by the NHS.
Dr Yifan Liang, who has carried out the role of Consultant in Paediatric Palliative Medicine, said: “It has been an amazing opportunity made possible by the vision and generosity of a small charity that recognised that there was a need and a desire for change.
“Losing a child is incredibly distressing. But end of life care for those with life-limiting conditions is not just about those final moments. It’s about making a real difference to the lives of those children, and their families, by addressing symptoms, fulfilling wishes for activities, memory-making excursions and enabling end of life in the place and manner of a family’s choosing.”
“My role has helped to create a culture shift, both within the hospital and for those being treated out in the community, demonstrating that our teams can serve the needs of children which are increasingly complex.”
Prior to 2018, the West Midlands did not have a specialist in Paediatric palliative medicine. Paediatricians cared for children at the end of life within their own sub-specialties and it was recognised that there was a need for a Consultant-led Palliative service to deliver care and support to families.
Molly Olly’s Wishes agreed to provide the funding for the first three years of the role, which worked across Birmingham Women’s and Children’s and Birmingham Community Healthcare NHS Foundation Trusts for the benefit of children and families right across the city.
The role provides a Consultant-led service by developing the existing nurse-led services as well as integrating care delivery for families between the hospital and community. For families facing the worst situation of losing a child, the support provided by joined up care is hugely beneficial, allowing more coherent options for location of end of life care to be realised. Fulfilling choices and wishes at the end of life has huge, lasting impact and significance for families.
One of the parents to benefit from the service is Aemal Akbari, whose daughter Sadaf has severe spastic quadriplegic cerebral palsy. He said: “I remember before 2018, which was the first time the palliative team’s service started in the community, it was really hard for us because of the nature of the complexity of the condition my daughter Sadaf has got. The condition requires specialist medicines and a quick response.
“But after 2018, when the palliative care services started more at a community level, it helped us significantly as a family. This is provided a bridge – a very crucial bridge – between us and the hospital. It has become a very crucial role in Sadaf’s day-to-day care management.”
Rachel Ollerenshaw, co-founder of Molly Olly’s Wishes, added: “For children and families going through such a heart-breaking experience knowing that your child is not in pain, they are in the environment that they or you as their parent have chosen to be at end of life, that the quality of life is as good as possible has a huge impact on the emotional well-being of the child and family.”
“The significance of this role cannot be underestimated. Molly Olly’s are confident that it has demonstrated the need, and as a consequence will help encourage greater support for Paediatric Palliative Consultants across the UK.”
A video on the innovative clinical role, funded by Molly Olly’s Wishes, is available here.