Skip to main content

Learning Disabilities Mortality Review

Volume 797: debated on Wednesday 15 May 2019


My Lords, with the leave of the House, I shall now repeat as a Statement the response given to an Urgent Question on the learning disabilities mortality review originally made by my honourable friend the Minister of State for Care in the other place. The response was as follows:

“Mr Speaker, I should like to start by restating our commitment to reducing the number of preventable deaths among those of our population with a learning disability and to address the persistent health inequalities that they experience. It is completely unacceptable that people in our country with a learning disability, and indeed autism, can expect a shorter life than the rest of the population as a whole.

Each and every death that might have been prevented is an absolute tragedy. We must not compound that tragedy by failing to learn lessons we can that might improve the care that is provided in the future. That is why the Government in the first place asked NHS England to commission the learning disability mortality programme, known as LeDeR.

The principle behind it is a relentless determination to learn from these deaths and to put in place changes to the way that care is organised, provided and experienced to make a real difference both locally and nationally. It means challenging often deep-rooted, systematic cultural issues that have existed for decades. It is driven by the fact that we are clear that the quality of care offered to people with a learning disability sometimes falls very short of the standards we expect—and that is simply not good enough.

The existence of the LeDeR programme testifies to our commitment to address that. It is so that people with a learning disability can access the very best possible care and support. The annual reports published by the LeDeR programme and the recommendations it makes, to which we respond, are a key part of this.

Over the weekend, the media reported on the findings of a draft of the third annual LeDeR report, which is due to be published shortly, and in making this Statement I record my deep regret at this apparent leak. It is also my regret that Her Majesty’s Opposition should table a UQ based on leaks, and indeed that the Speaker’s Office should see fit to grant it. I have committed in the past, and I will commit once again, to bring the final report before Parliament on the day of publication, which we are told by NHS England will be in the next few weeks. I know that honourable Members will feel as concerned as I do by some of the things that have been leaked in the report, which I shall be very happy to discuss in more detail when the report is fully published”.

I thank the Minister for repeating the Statement. I just make the obvious point that the Government have had the draft report since 1 March, and if they had published it in a reasonable time it might not have leaked.

I am sure that we can all agree that people with a learning disability have worse physical and mental health than people without a learning disability, and that the Confidential Inquiry into Premature Deaths of People with Learning Disabilities found that the average age of death from different levels of impairment was between 46 and 67 years, which is massively below the average lifespan for those without a learning disability. I look forward to the report, which the Government have told us that we will soon see.

Will the Minister now say that it is always unacceptable for learning disability to be given as a reason for not resuscitating someone? For this programme to work properly, does she agree that it needs to be resourced so that it can consider all reported cases in a timely manner? I suggest to her that many families feel that the review is the NHS marking its own homework, and that what is required here is a truly independent national body to review the premature deaths of people with learning disabilities.

I thank the noble Baroness for her important questions. On her first point, which is that the Government have had the report since March, I should like to be very clear that this is not a government report; it is an independent report from the University of Bristol. It is free to publish it when it is ready, although it was commissioned by NHS England, so the Government are not in control of the timetable for publishing it.

The noble Baroness is 100% right, however, on her point about “do not resuscitate” orders. The reports that we have heard that disabilities such as Down’s syndrome are being used by some doctors as a reason not to resuscitate are entirely unacceptable. We are taking immediate action and a letter will be sent to health professionals to make clear that that is not an acceptable reason to put in place a “do not resuscitate” order. On her last point about resourcing and the effectiveness of the LeDeR programme, progress has been made in implementing it: 15 out of 24 of the recommendations have already been completed, and in others we are making real progress. NHS England has trained more than 2,100 experts to carry out reviews, 1,500 reviews have been completed and a further 1,500 are in progress, but I have no doubt that given the situation in which we find ourselves, questions will be taken into account by NHS England and the department.

My Lords, I should declare my interests. I am chairman of Hft, a learning disability charity which cares for more than 2,000 adults. I thank the Minister for repeating the Statement and understand the limitation of her responses, but I am not sure that the Secretary of State’s words will console parents and other relatives of someone with a learning disability. If the Secretary of State were to take immediate action on any part of the leaked report, I should like it to be on the issue that the noble Baroness, Lady Thornton, just raised about “do not resuscitate” orders.

No one dies from a learning disability or Down’s syndrome. The reason for the annual report is to identify why people with learning disability die much earlier than the population average. Why and how well-trained doctors do not know and appreciate that appals me. Can the Minister put a note in the Secretary of State’s in-tray to suggest that this might be an area to look at urgently and remedy quickly? Can she ask him to ensure that all doctors in training learn to care for people with a learning disability, and that that is regularly refreshed as part of their ongoing professional development? Will she flag up to him that I look forward to discussing the report with him as soon as it is finally published?

The noble Baroness is absolutely right that this issue must be a top priority, and I assure her that the Secretary of State is taking it as such. I repeat that it is entirely inappropriate that disability of any kind—in particular, learning disability or Down’s syndrome—should ever be used as a reason for a DNR, and that NHS England will be writing to all doctors to remind them of this fact. It will be made absolutely clear.

The noble Baroness is right that there should be no reason for people with learning disability to have a different life expectancy. A commitment has already been made in the long-term plan to address those challenges, including increasing the uptake of annual GP health checks for people with learning disabilities to 75%, as it is recognised that physical care for those with learning disabilities is not as effective as it should be; creating a digital flag on patient records for all people with learning disabilities and autism by 2023; and reducing the number of in-patients with learning disabilities by half by 2024. We are increasing the pace with which we do that.

The noble Baroness’s last point, which is really important, concerns ensuring that all those working in the health system are trained to treat those with learning disabilities. A consultation on this matter has just closed and we will respond to that in the next two to three months.

My Lords, I thank my noble friend the Minister for her helpful answers so far. Is one of the problems that there is a contradiction between our natural desire to make sure that there is no variation in treatment or administration across the country and our equally natural desire to ensure that local people can make decisions on the basis of their local resources? Is there a sense that the Government cannot win?

In my view, there should be no variability in the quality of care that a person with learning disabilities receives in whatever part of the country they are in. That is exactly why the LeDeR was brought in, why we have brought in a care review to understand why there is variation, why we are bringing in support through training for those delivering care and why we are bringing in measures under the long-term plan: so that individuals can be identified and flagged up to healthcare professionals who, once they have the training, can apply it and bring in proper healthcare for individuals so that they do not see the life expectancy challenges in healthcare we have been seeing until now.

My Lords, I draw attention to my registered interests and involvement with Mencap and Mencap Wales. A moment ago, the Minister finished her answer by referring to the need for nurses to be trained, and to have the awareness and ability to deal with people with learning disabilities so as to mainstream what is happening. Can she assure us that some priority will be given to this issue? Until we get the lack of capacity sorted, we cannot make the reasonable adjustments that will solve the problem we are addressing.

I can say absolutely that priority will be given to this. The mandatory training consultation, which has just been completed, was published on 13 February. The consultation lasted eight weeks but such was the volume of responses to it that it was extended by a further month; it received more than 5,000 responses, which the department is currently going through. There has been a commitment to a response within two to three months. The Government are taking this extremely seriously.

My Lords, I thank my noble friend for her answers and the commitment and empathy she has shown, but let us be clear: what we are describing is appalling. The fact that people with learning disabilities—Down’s syndrome, autism and the like—have shorter life expectancies is completely unacceptable. I know that the Government and the Minister personally are committed to doing something about that but I want to return to the issue of training. To change a culture, we need to change not just the curricula of people training to enter the profession but the attitudes of everybody already working in the caring profession who do not always take these issues seriously. I appreciate that my noble friend will not be able to give details ahead of the consultation response in two to three months’ time, but can she give a commitment that we will think about not only training—in medical colleges, on nursing courses and so on—but continuing professional development so that everybody who is likely to have contact with people with learning disabilities in a care setting will have the opportunity to retrain, to understand the needs of these people and to make sure that we provide them with the care they deserve?

I thank my noble friend for his question. He is absolutely right: it is a disgrace that the reports demonstrate that too many people with learning disabilities are still dying prematurely and, all too often, for preventable reasons. We must ensure that we drive through the entire health system a change to make this come to an end. This is partly a matter of leadership, which is why it is absolutely right that Stephen Powis, the NHS England medical director, will write personally to doctors saying that it is not appropriate for DNRs to be based on disability and learning disabilities. It is why learning disabilities have been made a priority throughout the long-term plan and key programmes in the plan prioritise improving the physical healthcare of people with learning disabilities; that is important because it drives the issue up the priorities list of those working on an already busy schedule. It is also why the consultation on mandatory training will be brought forward as a matter of priority. Only when you have that combination of leadership, the practical healthcare programmes funded in the long-term plan and training will you get the culture change that my noble friend rightly identified as necessary.