Opinion

Rachel de Souza: Left in limbo

Viewpoint
For the children and families facing the crisis in community, mental health and SEN services, it is urgent and real, says the children's commissioner for England, Rachel de Souza
Rachel de Souza: '[Children] are waiting in limbo for a diagnosis'

There is an invisible crisis happening in children and young people’s community and mental health services, as well as in the wider system of support for special educational needs (SEN).

Services intended to help families and improve their lives have not been resourced to keep pace with the increasing need for assessment and support for children with neurodevelopmental conditions. It has created an adversarial, disjointed system that is fighting against itself, robbing children of huge chunks of their childhoods as they wait in limbo for a diagnosis or assessment and failing to intervene early enough – meaning children are missing out on major developmental milestones.

My report into this crisis revealed the crucial role nurseries and early years professionals play intervening early in a child’s life. Nurseries are often naturally set up to respond to neurodivergence in a way that schools are not. But they, as any other frontline service caught up in this fragmented system, face the same challenge of limited resources.

Many parents will spot the signs of a neurodevelopmental condition in these early years – in community health services, 35 per cent of children diagnosed were under three. Nurseries are on the front line of responding to this increasing need for support, with parents looking to them for help investigating their suspicions, but many may not be able to get it unless a referral is made by nursery staff.

Early years settings can help mitigate the ‘wait and watch’ approach, which too often means that a child’s unmet needs escalate to the point of crisis.

Now is the time for action. We need funding for nurseries and schools that is linked to the needs of their children, with greater flexibility in how it is used – helping them to deliver a new national framework for SEN support so that families can expect the same level of care, no matter where they live.

We need a joint workforce strategy from the Government and the NHS that takes seriously the problems in recruitment and retention to boost the number of health, education and social care professionals available.

And we need the right tools and training available to nursery staff to help them spot and support emerging special educational needs, as well as evidence-backed profiling tools rolled out across all nurseries and schools. These cannot and should not replace diagnostic assessment, but must be part of the package of support. At such a critical time developmentally, every day spent waiting for support could alter a child’s life course.