LeDeR Report 2024: What Care Providers Need to Know

Every year, the LeDeR report tells the Health and Social Care Sector something uncomfortable but necessary. The 2024 report is no exception. If you run or work in a Care Service, this isn’t just background reading. It’s directly relevant to how you train your Staff, what CQC will ask you about, and ultimately, the safety of the people you support.

What Is the LeDeR Report?

LeDeR stands for Learning from Lives and Deaths. NHS England Commissions this National review, and King’s College London carries it out. It looks at the deaths of adults with a Learning Disability across England. Every death reviewed asks the same question: could anything have been done differently to prevent it, or extend that person’s life?

It isn’t a one-off study. It’s been running for several years, and it has reviewed thousands of deaths. Together, these reviews build a consistent National picture of where Care is failing people with a Learning Disability and Autistic people.

What Did the 2024 Report Find?

Here’s what Providers need to know, in plain terms:

• People with a Learning Disability are dying, on average, 19 years earlier than the general population. The median age of death was 62.8, compared to 81.8 in the general population.
• 39% of these deaths were avoidable. That’s almost double the avoidable death rate for the general population, which sits at 21.1%.
• Over half of adults with a Learning Disability (56.6%) died before the age of 65. In the general population, that figure is just 14.8%.
• Respiratory infections, Ischaemic Heart Disease and Epilepsy caused a significant share of avoidable deaths.
• For the first time, the report looked specifically at adults with Down syndrome. They are dying on average 22 years younger than the general population, and many also live with Dementia.
• “Treatable” causes of death drove most of the gap. These are conditions that timely, effective Healthcare could have managed, through early diagnosis and prompt action when someone’s health started to decline.

There is a small amount of good news: the avoidable death rate has fallen from 46.3% in 2021 to 39% in 2024. That’s genuine progress. But people with a Learning Disability are still dying from causes that, with the right Care, shouldn’t have led to their death.

Why Do These Deaths Keep Happening?

The report doesn’t point to one dramatic failure. It points to something quieter, more everyday, and more fixable. The same issues show up again and again across reviews:

• Deterioration not recognised in time. Staff don’t always notice, or act on, the early warning signs that someone’s Health is getting worse.
• Reasonable adjustments not made. The Equality Act already requires things like longer appointments, easy-read information, or accommodating sensory needs. In practice, this doesn’t always happen.
• Communication breakdowns. Staff don’t always know how to communicate effectively with Autistic people or people with a Learning Disability, or adjust their approach when the standard way isn’t working.
• Diagnostic overshadowing. Staff sometimes put Physical Health symptoms down to a person’s Learning Disability or Autism, rather than investigating them properly.

None of these are rare or unusual events. LeDeR reviews keep uncovering the same issues, year after year. That consistency matters. It tells us this is a Training and systems problem, not a series of unfortunate one-offs. And Training and Systems problems can be fixed.

Why Oliver McGowan Mandatory Training Exists

Oliver McGowan Mandatory Training on Learning Disability and Autism exists because of exactly this pattern of failure. It’s named after Oliver McGowan, a young man with a mild Learning Disability and Autism. He died in 2016 after doctors gave him medication he had previously reacted badly to, against his and his family’s wishes. His mother, Paula McGowan MBE, campaigned for years afterwards to make sure no other family went through the same thing. Her campaign led directly to the Training becoming a Legal requirement.

Read more here.

The Legal position

Since 1 July 2022, Section 181 of the Health and Care Act 2022 has required every CQC-registered Health and Social Care Provider to ensure their Staff receive Training on Learning Disability and Autism, appropriate to their role. This isn’t limited to specialist Learning Disability Services. It applies across every CQC-Registered Setting, including care homes, GP surgeries, dentists and hospitals. It also covers ancillary and administrative staff, wherever they have contact with people with a learning disability or autistic people.

The requirement got stronger on 6 September 2025, when the Oliver McGowan Code of Practice came into force. This Code sets out what “appropriate to the person’s role” actually means in practice. CQC now uses it as the benchmark to assess compliance with Regulation 18 (Staffing) during Inspections. The government recommends Oliver McGowan Mandatory Training as the preferred way to meet this duty. Learn more.

Tier 1 and Tier 2, in simple terms.

The training splits into two tiers. Your staff’s roles determine which one they need:

• Tier 1 suits Staff who need general awareness of Learning Disability and Autism but don’t provide direct care or support. This includes an e-learning component.
• Tier 2 suits staff who provide direct care, support, or healthcare, or who have a high degree of autonomy in how care is delivered. This covers nurses, care workers, allied Health Professionals and Registered Managers. It includes face-to-face Training, co-delivered by Trainers with Lived Experience of Learning Disability or Autism.

As the Employer, you need to work out which tier applies to each role. You also need to keep records CQC can check, showing who completed which tier and when.

What makes it different

• People with Lived Experience co-design and co-deliver it. Autistic people and people with a Learning Disability don’t just get consulted on the content. They help build it and teach it.
• It targets the exact gaps LeDeR keeps finding, including recognising deterioration, making reasonable adjustments, avoiding diagnostic overshadowing, and communicating well.
• Independent evaluators tested it before National rollout, rather than assembling a training package without testing.

What This Means Practically for Your Service

If you’re a Registered Manager, Training lead, or Provider, this report should prompt you to check three things:

1. Do you have a clear Training matrix? It should show every Staff member’s role, which tier they need, and when they completed it, ready to show CQC on request.
2. Have you prioritised your highest-risk roles? Make Tier 2 Training your first focus for frontline Staff who provide direct Care or support, if they haven’t completed it yet.
3. Have you embedded the learning, not just completed it? A Certificate on file doesn’t guarantee safer Care. Think about how your Service escalates deterioration, records and actions reasonable adjustments, and supports staff to communicate well day to day, not just in a Training session.

A Note on NHS England’s Latest Guidance

NHS England has also published guidance on supporting autistic people and people with a Learning Disability to live well in their communities. It sets out what local systems need to have in place. We’re keeping a close eye on this, but we want to be upfront: we’re currently waiting for NHS England to update the accompanying materials, as the current version does not yet reflect the most recent information. We’ll update this post once that’s confirmed, so you’re not relying on anything out of date.

Where We Come In

We’re proud to be on the NHS Approved Provider list for Oliver McGowan Mandatory Training. Our approved status is confirmed directly with NHS England; we’re aware their published list hasn’t yet been updated to reflect this, and we’ll share the listing here as soon as it is. You can be confident you’re working with a provider that meets the standard NHS England expects, delivered by trainers with real lived experience.

This year’s LeDeR report makes the evidence clear. Proper Training, embedded well, closes the gap between good intentions and safe, person-centred Care. Good luck doesn’t close that gap. If your Team hasn’t completed Oliver McGowan Mandatory Training yet, or you’re not confident your records would satisfy a CQC Inspector today, act now.

Find out more about our Oliver McGowan Mandatory Training

You can read the full LeDeR 2024 report via King’s College London’s LeDeR research page.