The 2023 LeDeR report has been presented to Parliament and published online.
The arguably long overdue report relates to avoidable and preventable deaths of people with learning disabilities and autistic people which occurred in the UK in 2023. It reveals some small improvements against a backdrop of “stark new figures” and “unacceptable” differences in life expectancy.
The LeDeR report is designed to identify key areas of learning for the future and improve care for people with learning disabilities and autistic people, and was due to be published last year, but has faced unexplained and unprecedented delays.
Produced on behalf of NHS England, the report is led by researchers at the Institute of Psychiatry, Psychology and Neuroscience at King’s College London University, in partnership with the University of Central Lancashire, and Kingston University London.
LeDeR report shows 4 in 10 learning disability deaths are avoidable
This latest LeDeR report analyses the deaths of 3,556 people, notified between January and December 2023 and found that the number of avoidable deaths in people with a learning disability had fallen.
Avoidable deaths are those which occur in people under the age of 75 as a result of a condition deemed preventable, treatable or both.
In 2023, 39% of deaths in people with a learning disability were found to be avoidable, compared to 46% in 2021.
The report’s Chief Investigator, Professor Andre Strydom commented:
“While this improvement is undeniably heartening, we cannot overlook the context, as the rate is almost double that of avoidable deaths in the general population (21%).”
In addition, the report found that, in 2023, adults with a learning disability died, on average, 19.5 years younger than the general population. Nearly 60% of adults with a learning disability who had a LeDeR review had died before the age of 65.
In 2023 the most common causes of avoidable death in people with learning disabilities were influenza, pneumonia, cancers of the digestive tract and heart disease.
The LeDeR report 2023 also reveals that almost 4 in 10 (37%) cases reported some form of delay in care or treatment, while 28% included instances of diagnosis and treatment guidelines not being met. Nearly a quarter (23%) showed gaps in care provision.
LeDeR report remains a vital measure of care
Researchers explain that the findings prove “there is also a need for ongoing reporting of deaths of people with a learning disability and autistic people, and for initiatives such as annual health checks and support when people are admitted to hospital to reduce avoidable deaths.”
The latest LeDeR report placed greater focus on the deaths of people with a learning disability from ethnic minority backgrounds and those who had died and had a severe or profound learning disability. It reveals that, compared to individuals from white backgrounds, those with minority ethnic backgrounds had a significantly lower median age of death – with a 20-year difference reported between those from Asian and Asian British backgrounds compared to those from white backgrounds.
Around 4 in 10 (44%) of people from white backgrounds were aged 65 or above when their deaths were reported, but for people from Asian backgrounds the same percentage was true of the 24-49 age category.
A third of reported cases of avoidable deaths in people with a learning disability related to people with a severe or profound learning disability.
The report reveals that individuals with a severe or profound learning disability had a younger median age of death – 57 compared to 64 – and were more likely to have a treatable cause of death, such as conditions like pneumonia or seizures. In comparison, people with a mild or moderate learning disability were more likely to have died from preventable causes such as heart disease or cancer.
More data needed to understand mortality of autistic adults
The LeDeR report also analyses deaths among autistic adults without a learning disability. Researchers found that mental health issues were a prominent issue among autistic adults and stressed the need for continued data collection to improve the understanding of mortality for autistic adults.
One of the report’s authors, Senior Clinical Lecturer Dr Rory Sheehan, admitted the annual LeDeR report only captured “a limited number of reviews of the deaths of autistic adults,” but asserted “the data underscore the need to ensure timely access to good quality mental health support adapted to the needs of this group.”
He added:
“LeDeR data continues to be important in demonstrating the health inequities people with a learning disability and autistic people experience and pressing the need for change.”
“Unacceptable” differences in life expectancy, but some improvements
A spokesperson for the NHS said the latest LeDeR report indicated that progress was being made but that more needed to be done to improve care for people with learning disabilities.
They explained:
“The NHS has rolled out training to more than 3 million health and care staff to improve the care offered to learning disability and autism patients, and all disabled people have a ‘reasonable adjustment digital flag’ so they are recognised and cared for appropriately when getting NHS support.”
Responding to the report in the House of Commons, Health Minister Stephen Kinnock said it highlighted an “unacceptable” discrepancy in life expectancy for people with learning disabilities but also showed that good NHS practice had increased by 10% since 2021. He asserted a commitment to driving further improvements in care.
Meanwhile, the Chief Executive of national learning disability charity Mencap, Jon Sparkes, said the report provided “stark new figures” and added:
“People with a learning disability and their families deserve better. In this day and age, no one should die early because they don’t get the right treatment.”
The full LeDeR report can be viewed and downloaded online, and there is also an easy read version and an infographic highlighting the key findings.
Vital training to improve care, treatment and support
First Response Training (FRT) is a leading, national training provider.
They deliver over 7,000 courses each year in the fields of health and safety, first aid, fire safety, food safety, mental health, health and social care and other special focus topics.
Their diverse portfolio includes training awards designed for care workers, such as Oliver McGowan Mandatory Training, Positive Behaviour Support, Safeguarding Adults, Equality, Diversity and Inclusion, Person Centred Care and Support and many others.
Their course portfolio spans Care Certificate standards, mandatory training awards, clinical skills, special focus courses and training for supervisors and managers.
A Trainer at FRT, says:
“It’s vitally important that lessons are learned from the avoidable, unnecessary deaths of people with learning disabilities and autistic people, to ensure that mistakes are not repeated and more people do not experience the same failures in care.
“The latest LeDeR report shows that not enough has changed and lessons are not being learned quick enough, showing that high quality training is very much needed to help drive forward change and improve care.”
Oliver McGowan Mandatory Training
FRT was one of the first training providers in the country to be approved to offer essential training in line with the Oliver McGowan Mandatory Training on Learning Disability and Autism. They are quality assured to deliver Oliver’s Training through the Quality Assured Care Learning Service from the Department of Health and Social Care and Skills for Care.
The national training provider aims to empower and educate staff to transform their practice by embracing the lived experiences of autistic individuals and those with learning disabilities. Through the collaborative strength of their trios—facilitating trainers and experts with lived experience — FRT aims to inspire lasting change in how individuals are understood, supported, and valued.
FRT are hosting a series of open, public Tier 2 courses in London, Manchester and Birmingham in the coming months. You can book a space on any of these courses online now.
FRT have also developed a free-to-download quick guide to the new Oliver McGowan draft code of practice.
This guide explains what the new code of practice means for health and social care providers, how to stay current, and how to meet new legal duties.
You can also download FRT’s free Oliver McGowan Mandatory Training brochure.
Providing an alternative training solution
To offer health and care providers flexibility and choice, FRT have also developed their own Tier 2 Mandatory Autism and Learning Disabilities Training package.
Fully mapped to the core capabilities framework, Oliver McGowan Mandatory Training Code of Practice and externally accredited, this package offers providers an efficient, affordable alternative solution.
Please note that, while fully interactive, this webinar-based training solution does not meet the code of practice’s requirement for the training to be ‘face-to-face’.
The training is designed to meet statutory standards and equip health and social care staff to deliver more empathetic, person-centred support.
A trainer at FRT explains:
“This isn’t just about compliance. It’s a chance to improve outcomes, reduce bias, and truly understand the lived realities of autistic individuals and people with learning disabilities, helping to improve care and support and prevent avoidable deaths.”
You can learn more about how FRT developed this training package here.
For further information on other types of neurodiversity training, visit their webpage or download the brochure.
You can contact FRT via freephone 0800 310 2300, send an e-mail to info@firstresponsetraining.com or submit an online enquiry.