This week saw the publication of the 2024 Learning from Lives and Deaths (LeDeR) report. At first glance, some of the headlines appear encouraging. The proportion of avoidable deaths among adults with a learning disability has fallen from 46.3% in 2021 to 39.0% in 2024. Yet, despite this improvement, people with a learning disability are still experiencing avoidable deaths at almost twice the rate of the general population. They continue to die, on average, 19 years younger than everyone else. More than half die before reaching the age of 65. [kcl.ac.uk],
This is more than statistics. It is thousands of lives cut short, families left grieving, and a society that continues to fail some of its most vulnerable citizens. Every one of those deaths was a person who mattered to their family, friends and community. That is easy to forget when we become focused on percentages and trends. Professor Sara Ryan and colleagues have described these persistent and preventable inequalities as a form of ‘social murder’ reflecting the scale of the injustice many families experience.
I find myself asking the same question that many people with learning disabilities, family members, clinicians and providers are asking: how many more reports do we need before meaningful change happens?
The LeDeR programme has repeatedly highlighted many of the same issues for over a decade. We know that respiratory conditions remain a major cause of avoidable death. We know that epilepsy continues to claim lives unnecessarily. We know that people with learning disabilities often experience poorer access to healthcare, delayed diagnosis, diagnostic overshadowing, and failures to make reasonable adjustments. None of this is new information.
What is missing is action, not evidence.
Progress is Too Slow
The Government’s response to the report points to a range of initiatives, including the mandatory awareness training programmes, improvements to annual health checks, and the rollout of the Reasonable Adjustment Digital Flag. These are all positive developments and should be welcomed. [questions-…liament.uk]
However, too often these announcements risk becoming a substitute for meaningful systemic change. We have become very good at publishing strategies, guidance and action plans. Yet despite years of policy initiatives, people with learning disabilities continue to die nearly two decades earlier than the rest of the population. The gap between rhetoric and outcomes remains stark.
When adults with learning disabilities are still dying nearly two decades younger than the wider population, this cannot be presented as a success story.
The reality is that health inequalities on this scale would be considered a national scandal if they affected any other population group.
The Workforce Question that Continues to be Avoided
If we are serious about reducing avoidable deaths, then we must be serious about investing in the workforce.
For too long, learning disability nursing has been overlooked within workforce planning. Learning disability nurses play a unique and vital role in bridging the gap between health services, social care, individuals and families. They understand the complex needs of people with learning disabilities and multiple long-term conditions. They are often the professionals who identify deteriorating health, challenge inequitable treatment, ensure reasonable adjustments are made and advocate for people whose voices are too often ignored.
Yet the profession continues to face reductions in our health services, workforce pressures, recruitment challenges and insufficient national focus.
Alongside this, we need a highly skilled specialist learning disability social care workforce that is recognised, valued and properly developed. Social care staff support people every day. They are often the first to notice changes in health, behaviour or wellbeing. They are critical partners in preventing avoidable deaths.
If we genuinely want better outcomes, then workforce development cannot be an afterthought. It must be at the centre of the solution. It is not only about more accessible health and social care systems, it is also about having a dedicated specialist workforce for this group.
A National Health Plan Cannot Wait
PBS4 was proud to support Learning Disability England’s recent letter to Members of Parliament calling for a National Health Plan for people with learning disabilities.
The continued findings of LeDeR make the case for such a plan stronger than ever.
We need a coordinated national approach with clear accountability, measurable outcomes and sustained investment. Not another collection of fragmented initiatives, but a genuine commitment to tackling the health inequalities experienced by people with learning disabilities throughout their lives. There has been no dedicated government plan for everyone with learning disabilities since the 2001 white paper Valuing People.
A National Health Plan should address prevention, access to primary care, specialist support, mental health, epilepsy management, respiratory health, workforce development and reasonable adjustments across all health settings.
Most importantly, it should be co-produced with people with learning disabilities and their families. This should also include a dedicated focus on the needs of people with profound and multiple learning disabilities, and those with severe learning disabilities who can struggle to articulate their lived experiences, and whose needs can vary greatly from those who are typically included in coproduction.
The Greatest Concern: What Happens to LeDeR Next?
Perhaps the most troubling aspect of this year’s publication is that it appears to mark the end of LeDeR reporting in its current form. The Government has announced that future data will be incorporated into a broader dataset covering a range of health outcomes rather than continuing as a standalone national review programme. [learningdi…oday.co.uk]
I understand the rationale for improving data systems. Better data integration has potential benefits. But we must be extremely careful not to lose what made LeDeR so powerful.
LeDeR was never just about counting deaths. It was about learning from lives. It shone a light on the circumstances surrounding deaths, identified recurring failures, and provided a mechanism for accountability. My concern is that, without that focus, we risk losing visibility of the very inequalities we are trying to address.
I am also concerned by the timing of this publication. We are reading a report about deaths reviewed in 2024 that has only been published in mid-2026. At a time when urgent action is needed, such delays weaken the impact of learning and slow the pace of improvement. People with learning disabilities cannot afford a two-year delay in learning lessons that could save lives. If we truly believe every avoidable death matters, then learning must be timely, transparent and acted upon quickly.
“We Must Not Look Away”
One quote from people with learning disabilities involved in the LeDeR process stands out. They reminded us that these are not just numbers; these are real people whose deaths could, in many cases, have been prevented. Over half of adults with learning difficulties do not live past 65, report says – BBC News They are right.
The 2024 LeDeR report should not be seen as evidence that the problem is being solved. It should be seen as evidence that, despite years of awareness, profound inequalities remain.
If national policies, mandatory training programmes and annual health checks are to be more than well-intentioned initiatives, government and NHS leaders must be prepared to publish clear measures of success and be held accountable for progress. Without transparency and accountability, there is a risk that today’s commitments become tomorrow’s forgotten promises
At PBS4, we will continue to champion the rights, health and lives of people with learning disabilities. We will continue to support calls for a National Health Plan. We will continue to advocate for investment in learning disability nursing and the social care workforce.
Importantly, we will continue to ask difficult questions when progress is too slow or misaligned. Because a society should not be judged by the reports it publishes. It should be judged by whether people stop dying too young.
Written by Jonathan Beebee – RNLD, Chief Enablement Officer
