Last month, King’s College London’s NHS-funded Learning from Lives and Deaths – People with a Learning Disability and Autistic People (LeDeR) programme released its 2024 report, highlighting key findings about the lives and deaths of people with learning disabilities and autistic people.
The report follows the 2023 LeDeR report, which came under scrutiny following significant delays caused by discrepancies in the data. It subsequently revealed that a number of potentially avoidable deaths of people with learning disabilities had been incorrectly recorded, raising concerns about the accuracy of reporting and the scale of health inequalities faced by this population.
The 2024 report, which analysed data and death records for people with learning disabilities between 2021 and 2024, found a reduction in avoidable deaths among people with a learning disability. However, the rate of avoidable deaths remains significantly higher than in the general population, highlighting the ongoing health inequalities and barriers to healthcare experienced by people with learning disabilities.
While the proportion of deaths from treatable causes has fallen significantly since the previous report, decreasing from 46% to 39% in 2024, it remains around double that seen in the general population. Many of these deaths were attributed to treatable conditions such as pneumonia and epilepsy—conditions that can often be prevented or better managed through regular health checks, timely access to healthcare and appropriate health education.
Through our Kirklees Involvement Network, Calderdale Self Advocacy Network, Talking Lincs and Lead the Way services, we have been working alongside people with learning disabilities, local authorities and healthcare partners to raise awareness of the importance of annual health checks. However, these initiatives can only be effective when people are genuinely listened to and their views, wishes and concerns are acted upon.
The report also highlighted a stark and concerning fact: people with a learning disability are still dying, on average, 19 years earlier than the general population.
This year’s report, which delved deeper into Down’s syndrome statistics compared to previous years, also revealed that nearly four in five (78.8%) adults with Down’s syndrome died before reaching the age of 65, underlining the urgent need to address the persistent health inequalities experienced by people with learning disabilities.
The report also included a section on outcomes for autistic people. However, as with last year’s report, this section only made up a small proportion of the report compared to the data provided for people with learning disabilities.
Particularly concerning was the report’s finding that suicide was the leading cause of death among autistic people, with one-third of deaths recorded under the category of “suicide, misadventure or accidental death”. This stark finding serves as a reminder of the significant challenges many autistic people continue to face in accessing timely and effective mental health support. It highlights the need for healthcare services to listen to autistic people, respond to their needs earlier and build greater trust in the support available. This echoes Cloverleaf’s own findings from our Neurodivergence in Healthcare study, where many neurodivergent people highlighted significant barriers they face to accessing healthcare: Campaigns – Cloverleaf Advocacy
Commenting on the report, Self-advocates from the Calderdale Self Advocacy Network said: “An Annual Health Check should be more than just a tick-box exercise. It is our chance to be listened to, understood and supported to stay healthy. The LeDeR reports tell us that too many people with learning disabilities die too young because health problems are identified and treated too late. A high-quality Annual Health Check can save lives, but only if health professionals take the time to get to know us, make reasonable adjustments and act on what they find. People with learning disabilities deserve healthcare of the highest quality.”
Suzi Henderson, CEO of Cloverleaf Advocacy, said: “While this year’s report shows a reduction in avoidable deaths, any avoidable death is one too many. People with learning disabilities and autistic people should not experience poor health outcomes simply because of who they are. Everyone should have an equal right to healthcare.
Too many people continue to die from causes that could potentially be prevented through regular health checks and health education. The fact that people with a learning disability are still dying, on average, 19 years earlier than the general population, shows we have a long way to go for health equality.
We are also deeply concerned that the suicide rate remains high among autistic people. It is a sombre reminder that many autistic people are not getting the support they need at the right time. More needs to be done to ensure autistic people are listened to and can access appropriate mental health support in a timely manner.
These stats reflect real people and more needs to be done for them to be heard. We must work together to tackle health inequality and ensure that people with learning disabilities and autistic people have the same opportunities to lead healthy, fulfilling lives as everyone else.
We are calling on everyone with the power to make change, from Government and NHS leaders to local services, to take action to prevent avoidable deaths, improve mental health support and ensure people with learning disabilities and autistic people are treated with the dignity, fairness and respect they deserve.”
Read the 2024 LeDer report here: Combined 2024 LeDeR report
