A one hour debate in the Lords on Thursday blew some dusty old cobwebs away with blistering contributions from members. The film can be watched here and transcription here. It’s well worth making a brew and having a watch or a read. Personal experiences underpinned the debate with respectful and sensitive acknowledgement of the deaths of Patsy, Myles, David Lodge, Connor and many other people with learning disabilities.

Lord Paul Scriven was the force behind organising the debate and set the tone, stating the current situation is simply not acceptable. “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.” He referenced social murder arguing “state-sanctioned erasure whereby those very institutions aware of the risks to life choose to maintain the status quo rather than dismantle it”. Carefully dismantling current interventions that are often used to suggests a job is being done well, he listed the safeguards and reasonable adjustments Myles was supposed to have which failed. At Myles’ inquest, the coroner “found a culture stuck in another era where clinicians had only a superficial grasp of regulations and communication was unsafe”.

Why has the machinery of oversight failed so spectacularly, asked Lord S, as he described the CQC as a regulator of process and the Leder review a toothless archive of tragedy. I felt like punching the air as processes, interventions and programmes were punctured with intense sense and clarity. The government is acting in “a startling vacuum of oversight”. We are propping up what is a death making system. “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.”

Baroness Ramsey described the woeful health experiences of her sister Patsy while Baroness Hollins focused on the death of David Lodge which was again dense with failings. Digital flags, and patchy annual health checks were discussed with sadness as Baroness Hollins has been a central figure for decades, as a medic and a parent, involved in myriad initiatives while little has changed. “The question is no longer what needs to be done to ensure the safety of people with learning disabilities in health and social care settings, but why is it not being done?”

There is zero accountability.

Subsequent speakers raised the lack of accountability, the presence of interventions with no ‘heft’. As Lord Addington said “it is great having a flag, but what do we do when we see it?” There is some irony that the focus is on ‘flags’ while social murder happens in full view.

Hearing these words spoken in Parliament was refreshing. There was an energy set by Lord Scriven’s refusal to allow white noise to cloud the area, to allow empty words – annual health checks/digital flags/mandatory training/annual death review – to fill space. Human rights breaches are documented, evidenced and seemingly unstoppable. In the room yesterday, broadcast and laid on record, were determined, evidence-based, passionate words. As Lord S beautifully reminded us, Myles is “a citizen, with an inalienable right to safe care and an equal right to long life”.

He is indeedy. Thank you.