Why the need?

The needs of children and families are changing

As technology advances we are seeing more children surviving with medically complex conditions; they may have multiple healthcare needs, disability and / or life limiting illnesses. The fragmented health, education and social care systems often fail to serve these children and families well, through a combination of inadequate resources, difficulty managing complexity and uncertainty, and a mismatch between expectations and what is deliverable. As a result, their parents are often distressed, frustrated and exhausted. They recurrently note the absence of a lead clinician who knows and understands their child and can support them in hospital, at home and in the community.

In some centres in the USA, these children are identified as a special group ('children with medical complexity'), and teams and services are designed around their needs

The demands and pressures on staff are changing

We have held two meetings for clinical staff to talk about their perceptions of the changing world in which they find themselves. Clinical staff from all backgrounds (doctors, nurses, allied health professionals and others) often feel that they have not had the right training to look after the changing population of children on their wards. Those trained in acute care (for example, those working in general paediatrics, intensive and neonatal care) may not have the background in disability, complex long term condition management and end of life care. They may feel disempowered and ill-prepared for the ethical decision-making and conflict which is an increasing part of their day-to-day experiences. This is exacerbated by shortfalls in staffing and resource pressures. Many are experiencing mental health problems and burn-out, and this is leading to a recruitment crisis. 

The expectations of society are changing and this is being played out on social, as well as in the mainstream media

The media storm that accompanied the tragic cases of Charlie Gard and Alfie Evans represents the tip of an iceberg; on a day to day basis there is low-level conflict and distress as clinicians and families face increasingly emotionally charged ethical dilemmas. Societal expectations have changed, and the differing perspectives are currently being played out in the public arena in ways which are often poorly informed, and which can be unhelpful and damaging to all concerned. 

New ways of debating these issues have to be found, both in the privacy of hospital rooms and in the wider public domain.