Missing from the learning disability register, missing from care

Please note that views expressed in guest articles on our website are the authors' own and do not necessarily reflect the views of the Nuffield Trust.

Up to three-quarters of young people expected to have a learning disability may be missing from primary care learning disability registers. Recorded prevalence remains substantially below estimates of learning disability prevalence in the wider population. That is not simply a data problem. It is a patient safety problem.

People with learning disabilities continue to die significantly earlier than the general population, with many deaths considered avoidable. Decades of policy, national reviews and repeated recommendations have failed to close these health inequalities, as the Learning from Lives and Deaths – people with a learning disability and autistic people (LeDeR) programme continues to demonstrate.

England is now embarking on major reforms to special educational needs and disabilities (SEND), while national targets for learning disability health checks have been removed from NHS operational planning guidance. These changes make one question more urgent than ever: how can we reduce inequalities among people we fail to identify?

The importance of identification

People who are not identified cannot benefit from systems designed to reduce inequalities. For many young people with learning disabilities, inclusion on a primary care learning disability register is the gateway to annual health checks, reasonable adjustments, proactive care planning, and coordinated support during transition to adult services. Without registration, opportunities to provide care that recognises and responds to their needs may be missed.

Repeated LeDeR reviews demonstrate why this matters. Delayed identification of health needs, barriers to accessing care, and failures to make reasonable adjustments remain recurring themes in avoidable deaths. These are not simply isolated failures: they reflect a health system that too often struggles to recognise who needs additional support.

Our recent study in the British Journal of General Practice highlights both the scale of under-identification and the potential for improvement. Using national primary care data from 2015 to 2023, we found that registration increased substantially following initiatives linked to the 2019 NHS Long Term Plan, particularly during 2020/21, before subsequently declining towards earlier levels. This suggests that identification is not fixed: it responds to policy attention and organisational priorities.

That makes current policy changes particularly important. The removal of national targets for learning disability health checks risks weakening one mechanism that has maintained visibility and accountability. Our findings suggest that national priorities can provide a focus for case finding. Without them, there is a risk that identification once again slips down the agenda.

At the same time, the Children and Families Act 2014, the SEND Code of Practice and the government's recent SEND reforms all emphasise earlier identification and timely support. That ambition is welcome. But it depends on systems being able to reliably recognise learning disabilities in the first place.

Identification pathways for neurodevelopmental needs have increasingly focused on autism and ADHD, supported by established NICE guidance. There is no equivalent NICE guideline for identifying learning disabilities, nor a consistent approach to recording them across education, health and social care. Schools record primary and secondary needs, while NHS providers do not always have straightforward systems for consistently recording the full range of developmental needs. Young people with learning disabilities can therefore remain poorly visible across the very services intended to support them.

Identification must be recognised as core component of quality and safety

This fragmented approach matters particularly during transition to adulthood. Accurate identification can support transition planning, reasonable adjustments, and access to appropriate adult services. Failure to identify young people early risks widening inequalities at precisely the point when continuity of care becomes most important.

The challenge therefore extends beyond maintaining primary care learning disability registers. If England is serious about reducing health inequalities, identification must be recognised as a core component of quality and safety, rather than an administrative exercise. This requires shared definitions, consistent recording across education, health and social care, and systems that make identification straightforward rather than burdensome.

Registers are not valuable simply because they exist. They are valuable because of what they unlock: proactive care, reasonable adjustments, coordinated support, and equitable access to services.

The real question is not how many young people are missing from learning disability registers. It is how many opportunities for better care are being missed because they remain invisible.

The NHS Long Term Plan showed that focused national action can improve identification. As SEND reforms gather pace and national health check targets disappear, we cannot afford to lose that momentum.

Health systems cannot deliver equitable care to people they fail to see. Identification is not administration. It is the first step in preventing avoidable harm.

Dr Rakhee Shah is a Consultant Developmental Paediatrician at Chelsea and Westminster NHS Foundation Trust and a Senior Clinical Research Fellow at the Mohn Centre for Children’s Health and Wellbeing, based at Imperial College London; Dr Karen Horridge is a Visiting Professor of Childhood Disability and Development at the University of Sunderland; Prof Irene Petersen is a Professor of Epidemiology and Health Informatics at University College London.

Please note that views expressed in guest articles on our website are the authors' own and do not necessarily reflect the views of the Nuffield Trust.