Last year, the Department of Health asked me to consider the ‘system’ of care and treatment for a group of children and young people whose lives are often hidden from society.
They have a complex mix of disabilities, challenging behaviour and mental health needs. Many have autism as well.
What concerned me was that, despite numerous government initiatives – accelerated since the abuse of people with learning disabilities was uncovered at Winterbourne View – many children are institutionalised at an early age. This represents a huge cost to taxpayers and limits ambitions to improve the lives of those affected.
Speaking to families and professionals, what struck me was how often inability to change is due to a lack of ownership or accountability across a fragmented system of care. If professionals find the system confusing, then imagine how complicated it must be for parents trying to get the best treatment for their child.
So in my report, titled ‘These are our Children’, which was launched in January, I call for every child in an inpatient setting, or at risk of entering one, to have a keyworker. This person could from either the health or social care field, but should be in touch with both, and should act as a single point of contact for the family.
But we also need local services, commissioned by local authorities and clinical commissioning groups, that can respond to these children’s needs. Service providers should recognise the value of early interventions, base their responses on families’ needs and concerns and respond to any emergencies that occur.
At a national level, I call on the Royal College of Psychiatrists, the Royal College of Paediatrics and Child Health, the Royal College of GPs and other royal colleges to clarify the responsibility of medical professionals and others for these children. They should develop guidance together to ensure their roles are widely and consistently understood.
And there is much work for the Department of Health, Department for Education, Department for Communities and Local Government and NHS England.
They should act together to align the initiatives that apply to this group of young people. These include Transforming Care for people with learning disabilities, Integrated Personal Commissioning, continuing care and special educational needs and disability.
If we get this right, we can shift the focus of responsibility so that ‘these children’ become ‘our children’, with exactly the same rights to health, education, community life and hope as their peers.
- Dame Christine Lenehan is director of the Council for Disabled Children.