People with learning disabilities are dying when their deaths are avoidable: moving from learning to action – CBF’s statement on the 2023 LeDeR report
The latest 2023 LeDeR report, published yesterday (02/09/25) finds, as in previous years, that people with learning disabilities die early because of poor care, a lack of co-ordination and failures to provide proactive treatment. These deaths could be avoided.
Please be aware that some of the content of this statement may be upsetting. If you are a family carer and have been affected by any of the issues raised in this report, please contact the CBF’s Family Support Service – further details and resources can be found at the bottom of this statement.
After a delay of almost a year, the most recent Learning from Lives and Deaths – People with a Learning Disability and Autistic People (LeDeR) report has been published. This report looks at the lives and deaths of people with a learning disability and autistic people who died in England in 2023.
The report provides us with data, but every number represents a person – a son, daughter, brother, sister, aunt, uncle, a friend – a member of a family who was loved. Too many people died prematurely when they should have had longer lives.
For the first time, this report also included a specific chapter on people with severe and profound learning disabilities, highlighting the specific health inequalities they face – including the fact that people with severe or profound learning disabilities die on average almost 25 years younger than the general population.
The report provides evidence that too many people with a learning disability and autistic people died when their deaths could have been avoided. 38.8% of deaths of people with a learning disability in 2023 could have been avoided – this is nearly double the number of avoidable deaths in the general population. 1 in 4 deaths of people with severe or profound and multiple learning disabilities between 2021-2023 were treatable – meaning that, had better care and coordination been available, they would not have died. The number of treatable deaths in the general population is approximately 1 in 13.
The report also found that people with learning disabilities from non-white backgrounds who died between 2021-23 died at younger ages than people with learning disabilities from white backgrounds. The percentage of avoidable deaths for people with learning disabilities from non-white backgrounds between 2021-23 is also higher.
People with learning disabilities face significant health inequalities. The LeDeR report highlights that key issues for people with severe or profound learning disabilities include a lack of proactive care and treatment, poor organisational systems and delays and a lack or care co-ordination and overall responsibility. Too many people with severe learning disabilities experience poorer health outcomes because their ways of communicating health needs are misinterpreted. This “diagnostic overshadowing” often leads to significant delays in identifying health issues and in providing treatment and support.
The report also highlights that despite a national programme to stop people with learning disabilities being prescribed too much medication or medication that they don’t need, people are continuing to be given high levels of medication for long periods of time because this guidance is not being followed. In many cases, people with learning disabilities are being prescribed medication when they don’t have the condition the medication is for as a way of managing their behaviour, instead of other, more person-centred, and less restrictive ways of supporting them being considered.
Families contacting the CBF tell us that many healthcare professionals are unaware of the reasonable adjustments that are needed for people with severe learning disabilities, including:
- Family carers not being allowed to stay with their relative
- Hospital passports – which set out how to support someone with a learning disability, including their communication needs – not being used when they should be
- Assumptions about whether someone could (or should) receive treatment preventing them from receiving the care that their need
Families tell us that despite requesting support from a Learning Disability Liaison Nurse in hospital, this support is often not available, and that sometimes, healthcare professionals assume that people with a learning disability are unable to tolerate some forms of treatment – such as chemotherapy – which would be offered to people without a learning disability and which can be lifesaving.
The overall findings in this report, the 8th report from the LeDeR programme, remain similar to previous years. People with a learning disability continue to die when their death could have been avoided.
Over 20 years ago Mencap’s Death by Indifference report highlighted institutional failures to support people with learning disabilities to access healthcare – and the avoidable deaths they caused. Since then, we have seen multiple reports and inquiries, providing evidence that people with learning disabilities are facing serious healthcare inequalities
Despite a wealth of knowledge and evidence around how to improve care and outcomes for people, this knowledge is not translated into action. The Government must work with people with learning disabilities, families, and other stakeholders to identify and take concerted action to address the barriers to good health care.
We need to see systemic change, to include:
- Recruitment and training of more learning disability nurses to reverse the decline of the past 15 years – unless action is taken to increase the number of learning disability nurses, these numbers will continue to fall, and people with learning disabilities will continue to experience poor care
- Use of hospital passports so healthcare professionals understand how to communicate and provide effective support and care.
- Better understanding of the links between behaviour and health in people with learning disabilities
- High quality annual health checks
- Specialist support in the community and well resourced, multi-disciplinary community learning disability teams
- Reasonable adjustments, so people with learning disabilities can access the healthcare they need
- Support for people with learning disabilities whose behaviour challenges other than medication, and work to tackle people with learning disabilities being inappropriately/over-prescribed medication
- Overall responsibility and accountability for co-ordinating care for people with learning disabilities
- Better understanding and appropriate use of the Mental Capacity Act and Best Interest processes
We support the recommendations in this report, including the actions for health and care services to provide proactive health care and improve care coordination to avoid further treatable deaths of people with severe or profound learning disabilities.
Jacqui Shurlock, Chief Executive of the Challenging Behaviour Foundation, said:
“Each one of the avoidable deaths reviewed by this report was a person. Our thoughts are with all those who lost a relative or friend too soon and the grief and anger that may be rekindled by the data published today.
Any progress identified is far too slow and the reviews of deaths of people with severe or profound disabilities show that too many deaths are caused by poor care rather than because of the health condition itself. This is not something we should sit back and accept.
It is shocking to read that in some cases there was “a lack of professional curiosity” about the health of people with severe and profound disabilities and that people’s symptoms were not taken seriously.
We must see concerted action now by the government to properly understand and address the reasons for premature deaths. This action must include reforms to address poor treatment, delays and coordination or care.
The 10 Year Health Plan, published by the Government earlier this year, acknowledged the healthcare inequalities and poorer life expectancies that people with learning disabilities face but the proposed reforms do not include the evidence-based changes that could tackle this issue, as recommended by this report.
Neighbourhood health teams are a welcome reform, but they will not, on their own, deliver the level of proactive healthcare required to make a difference. The Government must work with people with learning disabilities, families and other stakeholders to identify and take action to address the barriers to good health care that this report (and the many others that have gone before it) have highlighted, so our health system starts to deliver good outcomes for people with learning disabilities.
People with learning disabilities must be able to access the healthcare that they are entitled to, with support that meets their needs. There is no excuse, the evidence is clear. Now we need action that makes a difference.”
Read an easy-read version of the report
The CBF’s resources and statements
You can read our statement on the 2022 LeDeR report here, and our recent statement on avoidable deaths here.
The CBF has a range of resources on health and care, which you can read below.
Read our information and guidance on health
Read our information and guidance on health and challenging behaviour
Read our information and guidance on reasonable adjustments
Read our information and guidance on getting the right support package
Read our resource sheet on learning disability nurses
The Co-Produced, Lifelong Action Plan has a section on health which sets out actions that tackle the health inequalities people with learning disabilities face:
Health – Actions for Policy Makers
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:
Family Support Service
If you have been affected by any of the issues raised in this report, 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 offer information about challenging behaviour to anyone who provides support to a child, young person or adult with a severe learning disability. We can also signpost you to other specialist organisations and sources of information.
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.