Learning Disabilities: Health and Social Care Access

Lord Scriven Excerpts

Thursday 26th March 2026 Grand Committee

Asked by

[Lord Scriven]

To ask His Majesty’s Government what assessment they have made of (1) the use of reasonable adjustments for, and (2) the safety of, people living with learning disabilities when accessing health and social care.

[Lord Scriven (LD)]

My Lords, I thank all noble Lords who put their names down to speak in this important short debate, which for me is rather a raw one. This debate is not to ask for more of the same; to do so would be to sign death sentences for thousands more individuals with a learning disability. The system does more than fail. It facilitates what Professor Sara Ryan describes as “social murder”. As both a researcher and the mother of Connor Sparrowhawk, whose preventable death occurred a decade ago, she uses this term to describe a state-sanctioned erasure whereby those very institutions aware of the risks to life choose to maintain the status quo rather than dismantle it. People with a learning disability die, on average, 20 years earlier than the general population, and 40% of these deaths are preventable. At current trends, it will take 102 years to close this life expectancy gap. I therefore ask the Minister: does she accept that this century-long wait is a human rights failure?

Saying that tweaks will be made to a fundamentally broken system is an acceptance of the status quo that killed Connor a decade ago, and it is the same status quo that killed my nephew. My nephew, Myles Scriven, died in 2023 at the age of 31. The coroner delivered a devastating judgment of the evidential reality of today’s health and care system. He found a culture stuck in another era where clinicians had only a superficial grasp of regulations and communication was unsafe. Most tellingly, the reasonable adjustments were laid out in Myles’s medical notes: advocates required; mental capacity tests required; a hospital passport required; communication support required. Yet this was ignored by all healthcare staff, despite the trust telling us at the inquest that 98% of staff had been trained. Safeguards existed on paper only; they did not exist for Myles.

Since Myles’s death, hundreds of families have contacted me, confirming that his experience was not an isolated incident. They have shared identical accounts of systemic failure. Reasonable adjustments are being bypassed, parental expertise is being dismissed, and regulators are failing to enforce the very standards that they are sworn uphold. Despite repeated warnings, some providers continue to ignore the very changes necessary to prevent further avoidable tragedy. Myles’s case was no outlier, but a systemic norm.

We see the grim reality of this failure in the superb journalism of Daniel Hewitt of ITV News, whose investigations have exposed a trail of preventable deaths where life-saving laws are treated as optional. We also see it in the timeless reporting of Dr George Julian, who spent a decade at inquests documenting the fatal consequences of diagnostic overshadowing. Her work reveals an ingrained culture that refuses to see the person behind the disability and a culture that sometimes weaponises the Mental Capacity Act, while completely abandoning the legal duty to provide reasonable adjustments.

So why has the machinery of oversight failed so spectacularly? The CQC has become a regulator of process. It audits the existence of policy, not the efficacy of its application at the bedside. With only one prosecution in this area by the CQC, despite hundreds of preventable deaths, I ask the Minister: does she not agree that the regulatory framework is fundamentally broken and requires urgent statutory reform? Similarly, LeDeR is a toothless archive of tragedy. It is a system of learning without much doing. It produces a report with no legal powers to compel change. Can the Minister say what the Government’s plan is to transform LeDeR from an archive of tragedy into a tool for change? Specifically, will they commit to a statutory requirement that makes LeDeR’s findings legally binding on providers?

The system is obsessed with inputs. It measures how many staff attend training, not whether they have learned and changed. It measures the number of annual health checks, yet senior clinicians say that these are frequently tick-box exercises. The quality is dangerously variable, leaving serious underlying health needs entirely unaddressed. A tweak will not save lives. We need a systematic reform of the implementation, accountability and regulatory framework that moves beyond paper policy and puts the actual safety and survival of human beings at the very heart of the system.

First, we need a statutory review of all deaths, ensuring legal accountability for implementing recommendations. Can the Minister explain the Government’s ongoing refusal to support this call and why they believe the current voluntary arrangements are sufficient, when the death toll suggests otherwise?

Secondly, the Government must look to the Netherlands, where a dedicated medical specialty for learning disabilities has transformed outcomes and extended life expectancy. We need senior clinical leaders—consultants who can navigate multiple overlapping health issues with the same authority that we see from clinicians in paediatrics. This is about providing the expert clinical leadership required to break through systematic inertia. Will the Government commit to the establishment of these senior clinical leadership roles across the system? Will they provide the recurrent funding required to ensure that this model delivers the improvement and accountability that are so desperately missing?

Thirdly, we need real leadership accountability. The era of moving on from tragedy to tragedy must end. If a provider fails, the responsibility for reform must personally be held right at the top. Accountability must be triggered where a leader presides over safety breaches and fails to implement documented remedial actions—then they should face a lifetime ban from holding any senior management or board-level position in the health and social care sectors. Government responses to my Written Questions reveal a startling vacuum of oversight. They currently lack the basic data required to identify where the system is failing. How can the Government claim to enforce accountability when they do not even track which safety actions are being ignored?

The Minister cannot change the past, but the Government can be the architect of a new era of robust, safe services, accountability and regulatory action that works—or do we continue to defend a system that oversees social murder by another name? Systemic change is more than a tweak; it is a fundamental shift in how we value these human lives. It is the transition from viewing my nephew as a tragic case to seeing him as a citizen, with an inalienable right to safe care and an equal right to long life.

If we do not move to a legally binding new model of improvement, accountability and effective regulation, the Government are effectively saying that a 20-year life expectancy gap is the cost of doing business. Families deserve more than a sympathetic nod. They deserve more than a system that does not work in practice and they deserve a guarantee that “never again” starts today. I look forward to the Minister’s response, not just as a Member of your Lordships’ House, but as an uncle who will not allow his nephew’s preventable death and those of others to be in vain.