Campaigners urge the government to publish the latest LeDeR report, after it experiences an unexplained and “unacceptable” delay.
The Department of Health and Social Care (DHSC) is facing mounting pressure to release the delayed report into the deaths of people with learning disabilities and autistic people, with critics accusing the government of “sitting on” the findings.
The Learning from Lives and Deaths report, known as LeDeR, is an annual report on the deaths of all adults with a learning disability and autistic people in the UK.
It was established in 2015 to investigate how people with learning disabilities and/or autism died and in what circumstances, with the aim of preventing future deaths. This is in response to official data, which indicates that people with a learning disability die, on average, 23 years earlier than the general population.
Delay in LeDeR report is unprecedented
Commissioned by NHS England and carried out by King’s College London, every other LeDeR has been published on time.
The latest, unpublished report relates to deaths which occurred in 2023, and was due to be released last year. The “unprecedented” delay in its publication means that the circumstances surrounding the deaths of people with learning disabilities or autism will now not be known until late 2025.
The LeDeR was submitted to NHS England and the DHSC last December, after having allegedly gone through “several review cycles” with King’s College London.
Disability campaigners had anticipated its release prior to Parliament’s summer recess, but it is now believed it will not be published until at least the autumn.
As a result, Health Secretary Wes Streeting is now being urged to publish the LeDeR immediately or provide an explanation for its delay.
Government questioned over LeDeR delay
Earlier this month, Liberal Democrat peer Lord Scriven spoke to ITV News on the issue, revealing that he had submitted two urgent questions to the government asking for an explanation for the report’s delay, but had not yet received a response.
Lord Scriven’s nephew, Myles Scriven – who had learning disabilities and was autistic – died while in the care of Calderdale and Huddersfield NHS Trust in 2023.
Lord Scriven criticised the “unacceptable delay,” in the release of the LeDeR report for 2023, adding:
“The extended wait for the LeDeR report’s publication raises important questions. It suggests either that the report contains findings which are challenging for the government and healthcare system or that the preventable deaths of people with learning disabilities are not being given the priority they deserve by those at the top of government.
“Like many, I am keen to see this report made public. I am calling for the immediate publication of the LeDeR report and would welcome an explanation from Wes Streeting regarding the ongoing delays.”
Professor Sara Ryan also spoke out about her frustration with the “incomprehensible” delay in publishing the LeDeR report.
Her son Connor, who was autistic and had epilepsy, drowned while unsupervised in a bath at an NHS facility in 2013. This tragic loss prompted her to research the deaths of people with learning disabilities and autistic people.
She told ITV earlier this month:
“We haven’t had a report since the end of 2023, the 2024 report, which was due out at the end of last year, hasn’t been published yet and has been held for incomprehensible reasons, and nobody is really saying why.
“We are facing these almost intractable problems about people dying earlier for no reason – constipation, drowning in a hospital bath, not receiving any healthcare whatsoever – conditions that people don’t die of in a country like the UK.
“Yet, the one mechanism, the one report we have, that provides data around these deaths is stuck somewhere – I have no idea where – but it’s stuck and I find that it truly appalling.”
LeDeR will help identify key improvements to tackle preventable deaths
A spokesperson from the DHSC said the government had “inherited a situation where the care of people with a learning disability and autistic people was not good enough,” but that they were working to change this.
The spokesperson referred to the recently published Oliver McGowan draft code of practice on statutory learning disability and autism training “to make sure staff have the right knowledge and skills to provide safe and informed care.”
Some have suggested that the government is waiting for the draft code of practice to be formalised by Parliament before publishing the latest LeDeR report.
The DHSC spokesperson added:
“We are committed to improving care for people with a learning disability and autistic people. The Learning from Lives and Deaths report will help identify key improvements needed to tackle health disparities and prevent avoidable deaths.”
Meanwhile, a spokesperson for NHS England apologised for the delay in publishing the report and said they “acknowledge this will be distressing for bereaved families. Practical data issue have delayed the work to date, but we are committed to publishing this report soon after Parliament returns.”
They added:
“This will ensure that there is proper and sufficient time for the report to be received and considered.”
Paula McGowan: continued LeDeR delay “risks more lives”
Celebrity and disability campaigner Chris Packham has joined calls for the long-awaited report to be published as soon as Parliament returns from its summer break.
Paula McGowan OBE also shared a powerful message on social media:
“The continued delay in publishing the LeDeR report is unacceptable.
“Every day of silence risks more lives of people with learning disabilities and autistic people.
“Transparency matters. Accountability matters. Lives matter.”
Paula’s son Oliver tragically died aged 18 when healthcare staff failed to understand his learning disability and autism and he received inappropriate treatment.
Since his death in 2016, his family have campaigned tirelessly for better training for healthcare staff. This eventually led to the introduction of the Health and Care Act 2022 and the statutory requirement for all health and care staff to undergo high quality training in learning disabilities and autism appropriate to their role.
Paula McGowan worked with NHS England, Skills for Care and people with learning disabilities and/or autism to develop the Oliver McGowan Mandatory Training Framework on Learning Disability and Autism. This aims to provide health and care staff with this valuable training and improve outcomes for people with learning disabilities and autistic people.
The Oliver McGowan Draft Code of Practice sets out the standards for this training.
Vital training for those working in healthcare
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.
“We hope that the LeDeR report can be published very soon for the benefit of everyone involved.”
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.
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.”
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.