Current structure and function
The Network provides an all Wales tertiary service as well as local secondary support in the care of children with any life-limiting condition, malignant or otherwise. It is administratively based at the Children’s Hospital in Cardiff, but individual members of the Network have their base in each of the Health Boards of the Principality as well as the children’s hospices that serve Wales. Its core members are the doctors, nurses and therapists delivering clinical care and other professionals are co-opted as is appropriate.
The terms of reference of the Network are currently under development, reflecting its joint origins from children’s and palliative care services.
The aim of the Network is to support children and their families with life-limiting conditions by facilitating the delivery of appropriate specialist care in whatever clinical environment the child is located. In practice, care is delivered through:
Specialist palliative care clinics in Boards and selected special schools across the Principality.
Medical Support (Consultant or GP led as is necessary) for children in Ty Hafan and Ty Gobaith children’s hospices.
Local support through local lead in children’s palliative care in each of the Health Boards in Wales.
Telephone advice as needed.
Dissemination of Wales wide guidelines and other resources.
Domiciliary visits by doctors and nurses in the Network.
Ward visits as needed.
The Network meets four times a year, and tertiary multi-disciplinary team meetings are held weekly at the Children’s Hospital.
The Welsh Managed Clinical Network in Paediatric Palliative Medicine was originally formed following the Children and Young People Specialist Services Report in 2007 (link). Since then, it has grown and, together with the All Wales Paediatric Palliative Care Forum, was able to give evidence to the Sugar Report in 2010 (link). Following that report, the Network was given the further task of taking forward the recommendations of the Sugar Report in respect of children’s palliative care services in Wales and was expanded to include local lead teams in most of the Boards in Wales.
The Network can be contacted either through the local lead nurse or paediatrician in children’s palliative care, or through Switchboard at the Children’s Hospital in Cardiff (029 2074 7747).
Out of hours
When available, out of hours is currently provided by one of the consultants on the Network who can be contacted through Switchboard at the above number.