Learning Disabilities: Health and Social Care Access

Baroness Ramsey of Wall Heath Excerpts

Thursday 26th March 2026 Grand Committee

[Baroness Ramsey of Wall Heath (Lab)]

My Lords, I congratulate the noble Lord, Lord Scriven, and thank him for securing this important debate and for his deeply powerful and moving speech.

One day in 2018, I was walking down a south London street, trying desperately to get through on the phone to my older sister’s GP in the West Midlands. Patsy, my sister, who I have talked about in this House before, had profound learning disabilities. She never talked, she could not walk and was doubly incontinent. She had recently been diagnosed with lung cancer, despite having never smoked.

The consultant who gave us that diagnosis had advised that her cancer was not suitable for treatment and that he expected that she would receive palliative pain-relieving care at the end of her life, at some unpredictable time in the future. There would be future X-rays to establish the progress of the disease because, of course, Patsy could not tell anyone in the usual way how she was feeling. Her carers, and my other sister and me, could tell when she was in pain or happy, or cold or hot, but obviously with medical treatment it was important to have more information on the progress of the disease.

In our regular conversations with our carers and from what we observed with our regular visits, it seemed on that particular day important that she had a follow-up X-ray, as she seemed to be less comfortable. Our main worry was that she was in pain. I had had to telephone her GP practice countless times to remind them of Patsy’s needs, as well as on numerous occasions to speak to the hospital that was supposedly looking after her. She never did have that follow-up X-ray.

Noble Lords will see why this matters so deeply to me and my family, and why I care about the importance of the NHS providing reasonable adjustments to people with learning disabilities. But in case anyone listening—not knowledgeable and expert noble Lords, of course, but perhaps people reading Hansard—thinks that this is an extremely unfortunate one-off, I take them into a meeting of the children and young people steering group for transforming care, a body that the then NHS chief executive, my friend the noble Lord, Lord Stevens of Birmingham, asked me to chair, with the aim of improving outcomes for a particular group of young people with learning disabilities, autism or challenging behaviour.

One day, we were meeting with the then Minister for Children in the Department for Education and the Minister for Social Care in the Department of Health and Social Care under the previous Government. An important part of our work was to try to break down the considerable barriers to health and education for children and young people in these circumstances. But I had to interrupt the Ministers to leave the meeting—very unusually, of course—to take an urgent call on my mobile. I have done that only in particular circumstances.

The call was from Patsy’s carer, who explained that she had had to take Patsy into A&E that day, to a hospital in the Midlands, because she had developed an infection. Hours later, Patsy was still on a trolley waiting to be seen by a doctor, and the carer’s shift was about to come to an end. She was phoning me because she was anxious that she would have to leave Patsy alone as, once my sister had been in the care of the NHS for a certain period of time, the care provider could apparently hand over contractual responsibility for Patsy until she was back home after treatment. I was nearly 150 miles away and was acutely conscious that she was about to be left all alone, lying on a hospital trolley, with no one to give her a drink of water or any food or to change her incontinence pads. I had no idea when she would be seen or what would happen next. It was intolerable.

My elbows sharpened, as I am sure other relatives will understand, and I persuaded the inexperienced but kindly carer to take her phone, with me on it at the other end, and find somebody who looked like they were in a position of authority in the hospital. I asked her to find the nurse in charge, but she did not know what that meant, let alone who that person was. She managed to find the nurse in charge, who I spoke to in very clear terms, explaining the nature of my sister’s learning disabilities, that she had not eaten or had any water or pain relief the whole time she had been in A&E and that she would need a change of pad.

As a result, my sister was then swiftly seen by a doctor, treatment was prescribed and that distressing episode was over. But what a shame that this information had not been on the hospital system automatically, ensuring that she was prioritised accordingly rather than ignored for so long. I was haunted by the image of my sister lying alone, uncared for. Of course, this is the problem that the reasonable adjustments digital flag has been designed to address. Its introduction is too late for my sister, who sadly died some months later, but it could make such a difference to so many others, which is why I am keen to understand from my noble friend the Minister how implementation is going.

The latest deadline for full rollout is September 2026. I say “latest”, as the 2019 NHS Long Term Plan set a deadline of 2023-24. Of course, the NHS struggling with national IT systems is nothing new, but does my noble friend have some good news for me? What about healthcare for people with learning disabilities more generally? Will this now get the priority that it has not had before? I did not see anything specific for this group in the latest 10-year NHS plan, but I know that Ministers are ambitious for change, which is certainly needed.

One more story about Patsy, perhaps the saddest of all, brings this to life. Another day, another meeting of the transforming care steering group and another phone call about my sister, this time to tell me it was time to come up to the West Midlands straightaway, as lung cancer had done its worst and Patsy did not have long to live. When I arrived it was clear that she was in pain and needed morphine, so I phoned the district nursing service to be told that there were only two nurses working across the whole district and that, since morphine was a controlled substance that needed to be administered by the two of them together, Patsy would have to wait for a while in pain—on the last day of her life.

Noble Lords can imagine what I said to those poor district nurses, for whom I felt sorry, but I made sure that my sister was as high up the list as she reasonably could be, given their other commitments. My other sister and I sat all day and night either side of Patsy. The district nurses came when it was her turn. She became calm after the painkillers were administered and, in due course, some hours later, she died peacefully. Of course, many people with learning disabilities get much better care than this, but we all know that many still do not. What can my noble friend the Minister tell us today that will give us hope that action will be taken so that fewer people in future will suffer needlessly in the way that my sister did?