Vital data on disability and additional learning needs is seriously lacking

Once again, the State of Child Health report presents a comprehensive picture—and a sobering set of facts. But we must remember that we can only tell the story when we have the right data to do so.

When it comes to disability and additional learning needs, certain facts are missing from the set. The multifaceted needs of these children and young people remain largely hidden from view.

Despite a mandate from NHS Digital in the Long Term Plan obliging NHS providers to report diagnostic data about disabled children and young people’s needs, few are able to oblige. One issue is a lack of easy-to-use interfaces at the point of care. Without these systems in place, it is impossible to capture and consistently code data. We need to get our act together and capture this information.

Moving beyond the medical setting, the school census often underpins education data, and serves as a proxy for the needs of disabled children and young people. Right now, this approach obscures the complex set of factors that need to be taken into account. Instead of a complete picture, we are left with only the so-called “primary need” being counted and made visible.

I look forward to a future report that is truly able to represent the many needs of this group.

This way of codifying oversimplifies the reality for many children and young people. Consider, for instance, an autistic child living with a learning disability, epilepsy, diabetes, constipation, disordered sleep, gastro-oesophageal reflux, a vagal nerve stimulator, and requiring around the clock care. Currently, such a child is simply coded under “autism spectrum condition”—concealing their other needs.

Until we can bring the full reality into our data, we are hindered in our ability to provide support. If we cannot get this right at the individual level, then we cannot gain thorough insights at the population level, either. This is reflected in the latest report. It is not possible to draw conclusions on trends within or between UK nations—even though we see nuanced comparisons for many other indicators.

There is no reason why we shouldn’t be able to bring disability and additional learning needs into that more sophisticated discussion. We should have basic data available to draw precise conclusions and call for policy accordingly. These children and young people should be included and have their needs met, just like the other groups featured throughout the report.

I look forward to a future report that is truly able to represent the many needs of this group. But this won’t happen by itself. We need policymakers and decision-makers to bring data collection to the point of care, where it is desperately needed. In doing so, we can bring unmet needs out of the dark, and ultimately better serve children, young people and their families.