NHS withdrawal of deaths data shows the damning lack of care for autistic and learning disabled people

In September 2025, NHS England and King’s College London published the 2023 version of the Learning from Lives and Deaths of People with a Learning Disability and Autistic People (LeDeR), which summarises those who have died in England. The LeDeR programme is produced with the intention of improving care for autistic people and people with learning disabilities, and preventing early deaths, which are far too common in these communities.

Last month, the 2023 LeDeR report – which had already been published extremely late – was withdrawn, due to ‘a technical issue within the data’ that ‘impacted elements’ of the report. KCL’s investigation found that some data on the causes of death were missing which should not have been. NHS England and KCL have said that the report will be republished this month, but the damage has been done to the families of those who have lost loved ones.

LeDeR is not just statistics

It’s very easy to say that mistakes happen when it comes to data, and of course they do. But the report being extremely late to start with in combination with this incompetence is symptomatic of the wider issues of a system that continues to oppress these groups, leading to so many different avoidable issues and ultimately, lives lost.

This ‘missing data’ is not simply research. Each one is a life lost from a family and the disabled community, often preventable and leaving people grieving. For them, this is not just a statistic or a little line of data in a report, this is another trauma to add to the pile. Many of these families are still navigating the same systems that have traumatised them and let them down, and that has to be taken seriously.

LeDeR was started because the median age of people with a learning disability is so much lower than the general population (autistic people were added to the reporting later down the line). There has been some improvement to this median age – from 60.1% in 2018 to 62.7% in 2022 – but this is still unacceptable. The LeDeR reports, and the people in them, must be treated with more care.

So many of these deaths were preventable

Huge amounts of the deaths that are seen across the various years of the LeDeR report can be understood as health and social care failures. Before the withdrawal of the data, the 2023 report showed that 1 in 4 deaths of people with profound, severe or multiple learning disabilities between 2021-2023 were treatable, compared to 1 in 13 in the general population. Causes of deaths include issues of delayed diagnosis and treatment, and adverse reactions to medication that should be noticed. Some of the more common diagnoses causing avoidable deaths are influenza, pneumonia, and some cancers.

People with learning disabilities and autistic people are not listened to in health and social care, causing entirely preventable deaths or long-term impacts. Individuals who communicate differently, or do not express pain or discomfort in exactly the same ways as their peers, do not deserve to lose their lives more quickly. And failures in the system such as so many not having access to preventative measures like Annual Health Checks remain. Programmes which work alongside LeDeR, like the STOMP programme (Stopping The Over-Medication of children and young People with a learning disability, autism or both), must continue to be funded and prioritised, particularly when considering the impending NHS England closures.

Although more recent LeDeR reports show a small drop in avoidable deaths, this is not enough. The system must commit to further measures which stop the premature loss of so many people with learning disabilities and autistic people. Increasing accommodations such as double appointments and Easy Read or plain language resources are crucial, but there also must be significant changes in culture amongst healthcare professionals and providers to begin to change this to deeper levels.

LeDeR must lead to real change – republishing the report is barely a start

The purpose of LeDeR is not simply to log those who have died. It is meant to lead to genuine care and change for how autistic people and people with learning disabilities are treated. We know that appropriate care is crucial to avoiding these premature deaths, and the drops in deaths are not yet significant enough.

Republishing the 2023 report this January does not even count as a beginning to fixing the way that communities vulnerable to oppression and discrimination in healthcare are treated. Nor does it fix the grief and trauma of families who are now finding out that their loved one’s death has been misused or been left missing in the report.

This incident must provoke bigger conversations and a better commitment to change when it comes to the lives and deaths of autistic people and people with learning disabilities – we are already so far behind.

Featured image via the Canary