Learning Disabilities: Health and Social Care Access

Baroness Hollins Excerpts

Thursday 26th March 2026 Grand Committee

[Baroness Hollins (CB)]

My Lords, I am grateful to the noble Lord, Lord Scriven, for securing this important debate and acknowledge with deep respect the noble Lord’s personal connection to the death of his nephew Myles; and to the noble Baroness, Lady Ramsey, for her moving speech.

This issue is about real lives, real families and the profound consequences when health and social care systems fail to provide reasonable adjustments. I speak as the mother of an autistic son with learning disabilities as well as a doctor, and I spent much of my career working with people with learning disabilities. I want to speak today primarily about David Lodge, whose death was recorded in the most recent LeDeR report and brings this into sharp focus. David was a 40 year-old man with a learning disability and autism. His sister Dr Lodge is a psychiatrist who some years ago worked here in your Lordships’ House with me as a parliamentary researcher. Her brother David was unable to speak using words and used AAC to communicate. He lived at home with his elderly father Peter, who was still his primary carer. When Peter unexpectedly died at home while caring for David, David had no way of raising the alarm. There had been no anticipatory emergency plan. Despite his father explicitly asking David’s social worker what would happen if he died, he was not helped to make a carer’s contingency plan. David was found by his sister days later and taken to hospital, where he very sadly died 13 hours after admission.

David’s inquest identified serious failings in his hospital care: basic physical examinations were not carried out, staff did not recognise how unwell he was and, most distressingly, he was left in pain. His sister told staff that David was in pain, but they did not listen. She told them that he had a hospital passport explaining how he showed pain. No one looked at it. No one acted on it. Despite her repeated concerns, David was not given any pain relief. A prevention of future deaths report issued by the coroner following David’s inquest raised clear concerns about the lack of reasonable adjustments around assessing David’s pain.

As we have heard, David’s case is not an isolated one. My research, published in the early 1990s, found that people with a learning disability died 20 or more years earlier than the rest of the population and it helped to make the case for a confidential inquiry. However, in the most recent LeDeR report, 39% of deaths were considered avoidable and men still die 20 years earlier. A recurring factor is the failure to provide reasonable adjustments. This is not the first time this House has debated reasonable adjustments, nor the first time I have spoken about them, and it is deeply troubling that the gap between policy and practice persists. 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? Does the Minister agree that perhaps a Select Committee or an inquiry should be established?

The reasonable adjustments digital flag, a national record of a person’s needs for reasonable adjustments across health and social care settings, is now live in England. The digital flag has the potential to ensure that reasonable adjustments are identified and recorded. However, implementation is slow and inconsistent, and recording alone is not enough if reasonable adjustments are then not provided. Tick box exercises are not enough. People with learning disabilities need trusted relationships. They need continuity in their relationships, not episodes of care after which a person is discharged, and not constantly changing healthcare professionals. David’s sister commented that his annual health checks were five-minute phone calls between a practice nurse who had never met David and his father.

My recent experience attending my son’s annual health check with him was incredibly disappointing. The health check was a tick box exercise delivered by a GP registrar who was about to qualify. He had not met her before, and she had not even heard of Oliver McGowan mandatory training. These are the same health checks at which reasonable adjustments should be agreed and recorded and a meaningful health action plan created. My son’s health plan was not discussed with us, but when it was sent to me it had three things on it and against each the action was “Mum to do”. That is me. Mum could not do.

I found this experience particularly painful as I was involved in the development of the Valuing People White Paper and subsequent work, including designing health checks; recommending health facilitators; helping to get the confidential inquiry agreed; and amending the Health and Care Act to include mandatory training and other initiatives, most of which have been implemented in patchy ways. If we are serious about safety, we must be serious about accountability. As the stories of Myles and David remind us, this is a matter of life and death. What mechanisms will the Government introduce to monitor compliance with recording and, vitally, to provide reasonable adjustments across health and social care?

Also, what accountability measures will apply when organisations fail to deliver? For example, what can be done to introduce standards for annual health checks? Would His Majesty’s Government require ICBs to commission learning disability liaison nurses to be available 24 hours a day in acute NHS trusts? What about committing to introduce David’s rule on the right for people with learning disabilities in NHS hospitals to be seen, heard and understood every day? This would include an obligation on healthcare staff to complete at least daily assessments of the person’s well-being, pain, hydration and nutrition, adapted to the individual’s communication needs—in other words, with reasonable adjustments—and at least daily communication with the individual’s carer, family or supporters to seek their views on the person’s well-being.

David’s sister is doing her own survey of local authorities and reviewing how many have included emergency care planning provisions, having done a carer’s assessment. I pick out one of her results. The City of York identified 298 carers’ assessments in the previous 12 months. Of those, only 32 had any details of emergency care plans, of which only four had alternative contact information. I wonder: does the Care Act need to be amended? If we are to honour the memories of Myles, David and the many others who die from avoidable causes each year, we must move beyond intention to delivery.