CBF statement on the 2024 LeDeR report
The most recent LeDeR report shows that people with severe and profound learning disabilities are continuing to die at a young age from treatable conditions. The CBF has serious concerns that the programme work to reduce and monitor this is being deprioritised.
Please be aware that some of the content of this statement may be distressing. If you are a family carer and have been affected by any of the issues raised in this statement, please contact the CBF’s Family Support Service – further details and resources can be found at the bottom of this statement.
“Don’t stop looking at this because that puts us back in the dark. Don’t look away however uncomfortable it makes you feel. It may seem like we’re not getting anywhere but we want you to keep reporting and reviewing the deaths of people with a learning disability. Our lives matter. Please listen, and then DO something!” Staying Alive and Well Group, Foreword to the LeDeR report
On 13th July, the 2024 ‘Learning from lives and deaths – people with a learning disability and autistic people’ (LeDeR) report was published. Our thoughts are with all of the people with learning disabilities whose lives and deaths are included in this report, many of whom died too young and whose deaths could have been avoided, and their families.
Like its predecessors, this report found serious inequalities between health outcomes for people with a learning disability compared to people without a learning disability. Although the median age of death increased slightly from 2023, people with a learning disability still die, on average, 19 years younger than the general population. The percentage of deaths that were avoidable (deaths which could have been either prevented or treated) for people with a learning disability (39%) is nearly double the percentage of avoidable deaths for people without a learning disability (21.1%).
Chapter 2 of the report focuses on people with severe or profound learning disabilities. More than a quarter of deaths of people with severe or profound learning disabilities were treatable (27.1%) – meaning that people with severe or profound learning disabilities were more than three times as likely to die from a cause of death which is treatable than the general population. Treatable deaths are deaths that could have been avoided with better healthcare.
The report found differences in the most common causes of death for people with severe or profound learning disabilities. For people with severe or profound learning disabilities, the most common causes of death were diseases of the nervous system (including epilepsy) and diseases of the respiratory system (e.g., pneumonia). These differences, and the high numbers of avoidable deaths, show the need to specifically focus on health outcomes for people with severe or profound learning disabilities – who in many cases could have survived if they had received the right support.
In their foreword, the Staying Alive and Well group of people with learning disabilities who contribute to and review LeDeR reports highlighted how unacceptably slow change has been, and the importance of remembering that the numbers in this report are not just numbers; they are the lives of people who died too young. But they also make the important point that while change is slow, this is not a reason to stop looking at why people are dying too young – it is instead evidence of why it is so important to continue reviewing the lives and deaths of people with learning disabilities, so that people get better care in future.
The government plans to end the LeDeR programme and shift instead to a ‘new patient level dataset, which will bring together data on health outcomes for autism, ADHD, and people with a learning disability’. We are deeply concerned that the programme has been deprioritised nationally and locally and that lives may be lost as a result.
Families urgently need clarity on what action will be taken to address the stark health inequalities faced by people with severe learning disabilities, how the Government will monitor progress, and how local areas will be held accountable for delivering change.
People with learning disabilities, and their families, deserve better.
Learning Disability England’s National Policy Leads Network, of which the CBF is a member, has published an open letter to the new Prime Minister calling for urgent action to help people with a learning disability live good, healthy lives. Add your name to the letter and help strengthen the call for change.
Further information
- You can read the report, including easy read versions, here
- You can also read our response to the previous LeDeR report here
- The Minister’s statement on the 2024 LeDeR report can be found here
Support from the CBF
Resources on our website
The CBF has information available for anyone who has concerns about poor support or abuse which can be found here:
We have resources about healthcare for people with severe learning disabilities, including reasonable adjustments.
Our Family Carer Advocacy Resource provides information for family carers about their, and their relative’s, rights, and how they can advocate for these.
Family Carer Advocacy Resource
Family Support Service
If you have been affected by any of the issues raised in this statement, you can call the Family Support Service on 0300 666 0126 or email us at support@thecbf.org.uk
We are open at the following times: Monday – Thursday: 9am – 5pm | Friday: 9am – 3pm
We can provide information and support about the needs of your relative with a severe learning disability whose behaviour may be described as challenging. We can also help you navigate the complex health, education, and social care systems.
Please note we are a small support service so you may not be able to get support straight away. We will support families with urgent concerns as a priority. Professionals are also welcome to contact the CBF.