Learning Disabilities: Health and Social Care Access
(1 day, 7 hours ago)
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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.
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?
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.
The Lord Bishop of Newcastle
My Lords, I am grateful to the noble Lord, Lord Scriven, for bringing forward this Question for Short Debate. I acknowledge his very personal connection to this topic and echo the words of the noble Baroness, Lady Ramsey of Wall Heath, in paying tribute to his powerful opening speech. I also express gratitude to the organisations that have written to me; I am particularly grateful for the extremely helpful briefing document from Mencap.
The topic of our debate has been on my mind since I sat on the Select Committee in your Lordships’ House as part of the Terminally Ill Adults (End of Life) Bill process. Persistent health inequalities for young people—well, for people generally—living with a learning disability and those with Down syndrome were raised on behalf of the National Down Syndrome Policy Group by Ken Ross, who gave evidence to the Select Committee describing
“a systemic direct and indirect bias shown within the health service, which could also be linked to a lack of understanding of the needs, wishes, health, learning and communication profiles of this particular group”.
The LeDeR report and others highlight that the rate of preventable deaths among those with learning disabilities is double that of the general population; the noble Lord, Lord Scriven, raised the critical matter of the lack of heft with LeDeR.
If we are going to make a real difference to health inequalities, we must focus on not only care delivery but preventive care such as accessible public health campaigns. The report noted that access to care is often missed for practical reasons such as a lack of accessible transport links, which, again, will only be compounded for rural communities. Preventive care that includes the practical must continue to be prioritised by ICBs in their strategies to reduce health inequalities.
As the Covid inquiry has continued, we have seen in close detail the impact of inappropriate application of DNACPRs, sometimes on those with learning disabilities. Fear and distrust of the health service for disabled people remains. In some places, that is worsened by geography. There are additional challenges of accessing care if living rurally—a particular feature of the area where I serve as Bishop, which includes Northumberland. This is about accessing the right care at the right time and with the appropriate reasonable adjustments in place.
On the availability of reasonable adjustments, the most recent LeDeR highlights that the involvement of a learning disability liaison nurse in someone’s interaction with the healthcare service is correlated with a higher likelihood of reasonable adjustments to care. It also says that access to learning disability liaison nurses is not straightforward in all parts of the country and they are less commonly available in the north-east.
We are living in an uncertain health and care landscape, and in the midst of significant reforms to the healthcare service and impending significant reforms to adult social care services. ICBs were asked to make 50% cuts to their running costs last year and, to meet this, many have made arrangements to merge and expand their geographical footprint. None of these agreements, to my knowledge, has been made in the north-east, but those ICBs will still have been required to make cuts. What then will the impact be of ICB cuts on the important measures to ensure patients have access to the reasonable adjustments they need? What support is being provided to ICBs to ensure that essential services like this are protected from cuts?
As we await the outcome of the Casey commission on adult social care, which promises significant reform, we know the huge pressure facing council budgets. Services such as Shared Lives, run by councils, are extremely beneficial, especially for those living with a learning disability. According to a survey carried out by the Association of Directors of Adult Social Services, 87% of its membership think that
“greater availability of Shared Lives would reduce or significantly reduce adult social care expenditure”.
Although this debate is not about the provision of social care per se, if care and support are the means by which we are all enabled to flourish, they are part of the discussion about ensuring reasonable adjustments to healthcare and good decision-making for patients.
In conclusion, overall, the problems are systemic, requiring stronger leadership, better designed services, collaborative thinking, improved training and consistent, proactive approaches to ensure equitable access to care.
Lord Crisp (CB)
My Lords, it is a privilege to follow four such powerful, knowledgeable and moving speeches. I will briefly discuss five areas.
First, following the powerful speech of the noble Lord, Lord Scriven, I congratulate him on getting this debate and focusing on reasonable adjustments—that kept coming up in all noble Lords’ speeches—and accountability. He discussed the learning disability physicians in Holland. One of their roles is, in a sense, cultural: it is not just what they do as people; it is what influence they have within the wider system. It is significant that there are physicians and doctors in that context and that they are playing a leadership role alongside their nursing and other colleagues. That is an important point, and I hope that the Minister will say something about discussing that at a later point—and not just whether she knows anything about it. Health is almost always about people. There may be other issues, but what happens inside the heads of the clinicians who look after us is really important. It is about how they see the world and how they want to behave.
Secondly, I will pick up on the Mencap briefing, which I am sure we all received. It makes the simple point that the NHS is not well designed to meet the needs of people with a learning disability—it is that simple. Mencap gives examples of that, and noble Lords have mentioned them already. I noticed one in particular that has a ring of truth about it: it seemed that, in many cases, one or two individuals in a practice were driving good practice, perhaps going above and beyond, and that care would fall apart when those people moved on. That is real. I not only see in that the importance of those people; I also bet they were good at beating the system and getting around the systemic obstacles that are in people’s way. That is the reality of what we have here. Accountability and the example of the learning disability physicians are part of that.
There is another issue here. What is good for people who have disabilities of different sorts is good for the rest of us as well. While we may not need the reasonable adjustments that some people need, we will need certain sorts of reasonable adjustments, particularly as we get older. This is about the focus on the individual patient in front of you and understanding that person as a person. All these stories are about not understanding the people that noble Lords have been talking about.
That takes me to the area of professional education. This is a much bigger question than this debate, but I would be interested to hear anything the Minister is prepared to say about it. Professional education has to change. For the people we are educating today—I am thinking about pre-service education—the world in which they will be working will be so different in 20 years’ time. AI is already affecting us in so many ways—but it is not just AI; it is all the other technologies that are around and impacting us.
Health is not just about smart technology; it is about people. When that develops, the leadership roles of professionals will involve picking up on some of the things that we are starting to talk about. I work with a group of young doctors who are trying to change some of this to get more emphasis on prevention and health creation—by which I mean creating the conditions for people to be healthy and helping them to be so.
The third area I have been reminded of is about reasonable adjustments and seeing the patient in front of you. I am not quite sure what the right language is here, but “reasonable adjustments” is what we use in this part of the world. I hope that we will return to professional educational change in the House and try to give it some push. There are lots of people out there who want to make that sort of change.
My two final points are about statistics. There was a wonderful description of the LeDeR results as a “toothless archive of tragedy”—we will remember that. The statistics are pretty awful. As the noble Lord, Lord Scriven, said, this is not about tinkering but about fundamental change. Where do we want to be in five years’ time?
Finally, I will share my personal story, which is not as tragic as those of others. I had a brother-in-law, Gareth, who had Down syndrome. At the end of his life, he suffered from dementia. He had some of the problems that people have talked about but to a much lesser degree than noble Lords have referred to. What we discovered about dementia as he became worse is that very little is known about dementia for people with Down syndrome. Yet there is a genetic connection that suggests that about 50% of people with Down syndrome will end up having some level of dementia by about the age of 60. There needs to be much more research in this area and more development of services. The simple answer is that people did not know how to handle it—it is just another service that did not know how to handle somebody with learning disabilities.
I will end with a point of praise for North Derbyshire. There is a community dementia team there—it is one of the few community dementia teams in the country—and it is first class. Its members were able to be those one or two people who sorted out and beat the system—they knew the back door and the ways to get things done. I have put this on the record before in the House, but I again praise that team. I hope that the Government are listening and will pick up on that in the future.
Lord Addington (LD)
My Lords, the most depressing thing about this debate is that it has been decades since I first spoke in a debate that pointed out that anybody with a learning disability or autism will have very bad health results and die early. That is an established fact. My noble friend said that you cannot change the past, but let us at least learn from it. We have been doing this for a long time with various Governments.
It turns out that our medical system is based on somebody telling a medical professional what the matter with them is by responding to certain, usually verbal, stimuli. Any group that has not been able to do that has always suffered badly. For example, it is an established fact that people using sign language have suffered badly. If we are going to do something about that, we will have to make some reasonable adjustments—that is the expression we are using here. If we do not do that, we will continue to get bad results because the medical profession will get involved only when something becomes obvious. We have all been told, again and again, “You should have seen a medical practitioner sooner”. We are guaranteeing that that will happen here if we do not find a way to assess those needs and get in earlier.
For anybody who has a communication problem or is communicating through one person that is going to be worse still. An example is the fear of an individual, usually a parent, who thinks, “What happens to my child with a disability when I’m not around?” The emphasis on that has been made very clear. It might be another relative who is doing the caring or somebody else. According to everything that we have heard today, they are quite right to be frightened when they are going through that.
We also have a system that has a series of flags coming up. As my noble friend pointed out to me, it is great having a flag, but what do we do when we see it? Until we get that ingrained in the training and structure—indeed, until somebody’s life is made more than a little unpleasant if they are not doing it—we will not get change. Every time we have a system that works in a certain way and we want to deviate slightly, what is required is to play the system and get around it.
I will repeat another bit of black humour. It is often said that the first thing a disabled child who wants to do well should do is to choose their parents carefully in order to give them that advantage. I am afraid that that still applies. What are we doing to make sure that when we have a system in place, action is taken? Then, if we have a system in place, are medical professionals told—even if they are not trained to do it themselves—how to communicate with somebody with autism who takes things very literally? How do we get that information out to them? If the patient has certain types of learning difficulties, how do they get in touch with somebody to receive health checks? Those checks normally depend on tick boxes, so how do we avoid that? How do medical professionals extract information from that person, given that we depend on their assessment of their health? If they cannot do it, a prolonged examination will be needed. All of that is clear. If you follow it through, there is an iron logic to it, and it has not changed. It is an accepted system.
I will ask the Minister a few questions. On the flagging system, what is the process to make sure that people react to flags? Where would a medical professional go to get help interpreting and extracting information from a person who has certain types of communication or perceptual difficulties? That is particularly the case if the parent or carer is not readily available. Is there a process? If not, there should be because we are guaranteeing more failure if we do not have one.
These are the things that we have come back to over and over again for years. They have been said with more eloquence and knowledge than I can manage today. Unless the Government can start to address this, we will come back to this subject again in a new form because nothing will have fundamentally changed. I hope this Government will at least move this project on because, let us face it, it is well overdue and needs to be given a good hard push, or even a kick.
The Earl of Effingham (Con)
My Lords, I thank all noble Lords for their valuable contributions, including the noble Lord, Lord Scriven, and the noble Baroness, Lady Ramsey, for their lived experience of this important issue. Ensuring that people who live with learning disabilities are able to access safe and effective health and social care is a fundamental test of the fairness of our system. Reasonable adjustments are essential to ensuring patient safety and equitable care. However, we know that, regrettably, people with learning disabilities continue to experience poorer health outcomes and face avoidable barriers when accessing services. This is a matter of both access and safety. Where reasonable adjustments are not properly understood or implemented, the consequences can be severe.
When in government, we took important steps to try to address these issues as best we could. The Health and Care Act 2022 placed a clear requirement on providers to ensure that staff receive training in learning disability and autism. The Oliver McGowan code of practice established a consistent standard for training across health and social care. The NHS Long Term Workforce Plan set out ambitious goals to increase learning disability nursing training places by 46% by 2029. The noble Baroness, Lady Hollins, made some constructive challenges of our proposals, and I of course respect the views of an acknowledged expert, as the noble Baroness is.
However, it is now the responsibility of this Government to make good on our previous commitments and push through the further social care reforms that are needed. The Government published guidance last year stating that any adult social care providers arranging staff training between April 2025 and March 2026 would be reimbursed. Will the Minister update the Committee on how many adult social care providers have participated in this scheme and what steps the Government took to ensure that social care providers were aware of the funding available?
Pressing workforce challenges also threaten effective access to social care. Faced with falling student numbers, some universities have been forced to close learning disability nursing courses. In the south-east of England, there is no learning disability nursing course available. Nursing in Practice reported that the domestic supply of learning disability nurse specialists could run out by 2028. While the Conservative’s workforce plan set ambitious targets, the most recent data shows a negligible increase in the number of learning disability nurses of 4% between 2024 and 2025. The Government have committed to publishing a revised NHS workforce plan by spring 2026, so can the Minister now provide a publication date? Are the Government confident that the existing targets remain achievable?
We also have concerns regarding accountability. The removal of the quality and outcomes framework indicator relating to learning disability registers raises important questions. If only a proportion of those with a learning disability are currently captured on the registers, how exactly will the department ensure that all patients are properly identified and supported as they should be?
Finally, I turn to the issue of safety. The insights of the learning from life and death programme are invaluable in understanding the causes of mortality and identifying areas for improvement. The most recent report’s issue with the integrity of its data and delays was most unfortunate. The noble Lords, Lord Scriven and Lord Crisp, mentioned LeDeR. His Majesty’s loyal Opposition suggest that it is fair and reasonable to ask why the Government have not placed the programme on a statutory footing. Through what process will the Government ensure that the report’s findings are consistently translated into improvements in care at a local level?
It appears that many noble Lords are in broad agreement on the importance of this issue. The framework for improvement exists; the challenge now lies in ensuring effective implementation. The noble Baroness, Lady Hollins, highlight this very clearly. We hope the Minister will provide clarity on how the Government intend to bridge the gap between policy and practice to ensure that those with learning disabilities receive the safe and equitable care they deserve.
The Parliamentary Under-Secretary of State, Department of Health and Social Care (Baroness Merron) (Lab)
My Lords, I am pleased to respond to this Question for Short Debate, and I congratulate the noble Lord, Lord Scriven, on securing what, as we have heard, is a very important debate. I also congratulate him on his commitment to improving outcomes for those who have a learning disability. Personally and publicly, I also want to acknowledge—I will use the noble Lord’s words—how raw this is for him. As well as giving my condolences on the death of his nephew Myles, I can only say that I genuinely believe that, as Myles’s uncle, he pays the greatest tribute to the memory of his nephew as he strives to improve services. It is a mission with which I fully associate myself and the Government.
I also want to acknowledge the other losses of the bereaved—not just those of noble Lords sitting here in the Room but those outside too. I have listened to the debate closely and if I am honest, what I am about to say can only in part meet some of the very real questions, and a number of the proposals too. I will do my best and I commit to raising the points made with my honourable friend Minister Zubir Ahmed, in whose portfolio this sits. I know he will welcome, as I have done, the contributions today.
I will pick up as many points as I can in the time that I have. All noble Lords, including the right reverend Prelate and the noble Lord, Lord Crisp, made the point that the health inequalities faced by people with a learning disability are totally unacceptable. I certainly align myself with that. We are committed to driving change. The 10-year health plan gives me hope in this regard because it outlines our ambitions to tackle health inequalities and speaks to the point the noble Lord, Lord Crisp—not exclusively but particularly—made about the need to see the whole person. That is what is missing generally, and it is what the 10-year health plan seeks to tackle, including driving that critical shift from treatment to prevention. The two issues that are presented by this debate are inseparable. I am grateful to the noble Lord for the way he has presented that.
I therefore say at the absolute outset to the noble Lords, Lord Scriven and Lord Addington, that a near 20-year life expectancy gap is not acceptable under any point. I also thank the noble Lord, Lord Addington, for saying that the shortcomings and concerns we are debating have been going on for many years, and what is important is that commitment to change. The noble Lord, Lord Crisp, who spoke of the experience of his brother-in-law Gareth, also spoke of good practice in Derbyshire. We should commend all those who do this and learn from it.
To the point about reasonable adjustments, there are clear legal requirements on health and care organisations and their staff. I hear what noble Lords say clearly: yes, that is all very well but it is not happening. But it is worth reminding ourselves that, under the Equality Act 2010, public sector organisations are required to adapt their approaches in a very practical sense, as the noble Lord, Lord Addington, called for, so that their services are accessible to disabled people as well as to everybody else.
I am grateful to my noble friend Lady Ramsey for bringing Patsy into the Room again. NHS England is rolling out a reasonable adjustment digital flag, as we have spoken about here. That will continue and it is to ensure that, in the way that she rightly demands, key information about a person and the reasonable adjustments needed for their care and treatment are to be recorded in care records. I say to my friend the noble Lord, Lord Addington, that a new information standard was published in December 2025, such that all publicly funded health and social care service providers must be able to share, read and write reasonable adjustment data by 30 September. Training on this digital flag is freely available.
Turning to the safety of people with a learning disability while accessing health and social care, the NHS learning disability improvement standards provide a framework to support NHS trusts and organisations in assessing the quality of their services, because we have to see consistency and improvement across the NHS. There is guidance available on the use of health and care passports to support personalised care for people with a learning disability, and for autistic people.
I say to the noble Baroness, Lady Hollins, that I am deeply saddened by the tragic circumstances of the death of David Lodge. I send my condolences to David’s friends and family. In response to the noble Baroness, who called for a way forward, and the noble Lord, Lord Scriven, who raised whether this can all be a tool for change, because it is not currently—I heard him say that—I know that the noble Lord recently met the Minister for Health Innovation and Safety, Zubir Ahmed MP, as I mentioned. I understand that my colleague the Minister has agreed to work with the noble Lord, Lord Scriven, to continue to hear insights from those with lived experience and wider stakeholders. The Minister is currently working with officials to explore options to improve the process, because we know there is a lot further to go to get ICBs to meet the expectations they have upon them. All these points have rightly been raised on ensuring accountability, reducing inequalities and preventing avoidable deaths. That work will absolutely continue, and I look forward to noble Lords taking part in it.
The noble Baroness, Lady Hollins, asked whether there are any plans to establish a specific inquiry or committee. Currently, there are no plans to do this; however, as I have said, the Minister is very much on the case. On wider action to improve health outcomes, I absolutely hear the points made by the noble Baroness not only in your Lordships’ House but to me personally before this debate, for which I am grateful. If we are talking about those with learning disabilities, we are talking about not just episodes of care but building relationships to enable the correct care for that person; I use the word “person” very definitely in this regard.
Reference was made to the Health and Care Act 2022 and the requirements that it contains. The Government have published a code of practice setting out their expectations on training delivery, and we continue to roll out the recommended Oliver McGowan mandatory training package. I can tell the noble Earl, Lord Effingham, that more than 3 million people have completed the first part of the training, and funding has been provided to support greater uptake this year.
On the point about health checks, the Secretary of State recently wrote to all GPs to emphasise the importance of identification, recording and the quality of the checks themselves.
A number of very pertinent points have been made. I assure noble Lords that they will all fed into the move towards improving the situation for those who have learning disabilities. We owe them nothing less.