- 1:27 pm
- (Urgent Question): To ask the Secretary of State for Health and Social Care to make a statement on the learning disabilities mortality review.
- I would 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 addressing 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 population as a whole.Each and every death that might have been prevented is an absolute tragedy, and we must not compound that tragedy by failing to learn any lessons we can that might improve the care that is provided in the future. That is why the Government asked NHS England in the first place to commission the learning disabilities mortality review 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 care is organised, provided and experienced, to make a real difference locally and nationally. It means challenging often deep-rooted, systematic or 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 this issue so that people with a learning disability can access the best possible care and support. The annual reports published by the LeDeR programme and the recommendations it makes are all 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. In making this statement, I would like to record my deep regret at this apparent leak. It is also a regret that Her Majesty’s Opposition should table an urgent question based on leaks and, indeed, that the Speaker’s Office should see fit to grant it. More generally, the House—
- Order. The Minister will resume her seat. Forgive me, but I was being approached by the right hon. Member for South Holland and The Deepings (Sir John Hayes).I have the highest regard for the Minister, who is always a person of the utmost courtesy. She can have an opinion about the decision of a Member to apply for an urgent question; it is not for a Member on the Treasury Bench to seek to offer a judgment on the way in which the Speaker discharges his responsibilities as Speaker. I have made a judgment that this matter warrants the attention of the House, and that judgment is not to be argued with or contradicted by a Member of the House. The Minister’s duty is to come to the House and answer the question, but do not argue the toss with the Chair. That is the wrong way to behave.
- Thank you for clarifying that, Mr Speaker. I do not dispute that this is absolutely the right place and time to discuss this very important issue, but more broadly I think that Members across the House need to take a clearer view on how we discuss and view leaks, and to take a more consistent approach to that, because in recent weeks we have seen leaked information discussed in a very different way in the House.
- I understand. I hope I heard the hon. Lady correctly and I think I heard her correctly. She said what she said, and I am happy that she has offered that clarification or explanation of her thinking. I have no desire to have any argument with her about the matter. The issue is what needs to be aired, rather than the procedural question, but she has said what she has said on that, and I am sure she will now want to attend to the specifics of the inquiry.
- Thank you, Mr Speaker.With regard to the LeDeR programme, I have committed in the past and will commit once again to bringing the final report before Parliament on the day of publication, which we are told by NHS England will be in the next few weeks. Members will feel as concerned as I do about some of the things in the report that have been leaked, and I will be happy to discuss the more detailed information when the report is fully published.
- Well, this is a mess, isn’t it? Last year, the first report from this important review was sneaked out on a Friday, in the middle of the local election results, and this year we have read about it through leaks to The Sunday Times and the Health Service Journal. The Minister says that it is a draft that is going to be published shortly; I understand that the authors handed it over on 1 March. How long does it take the Department to turn round a draft? Clearly, somebody somewhere thinks it should be out there, because somebody somewhere is leaking it. Will the Minister take responsibility for this process and ensure that future reports are published in a timely manner? I am not happy with “shortly” or “in a few weeks”; will she tell us when the full copy of the report—not just what was leaked, first in the Sunday papers and now in the Health Service Journal—will be available?It appears from the leak that the review has been able to consider only a quarter of the premature deaths reported to it, leaving more than 3,000 families waiting for closure—it is those 3,000 families on whom we should be focusing—and that well over a third of cases do not even have a reviewer assigned to them. That shows that, as we suspected last year, the LeDeR programme is significantly under-resourced, so will the Minister pledge now to ensure that the review has the resources it needs in future?Last year, the Government made 24 specific commitments relating to the annual report, and 15 of them were due to be completed by now. Will the Minister update the House on the progress on those commitments?The leak tells us that the review found that in 8% of cases the care given“fell so short of good practice that it significantly impacted on their wellbeing or directly contributed to their cause of death”.What is the Minister doing now to ensure that no more people with learning disabilities die early because of poor care?
- This is not a mess; the Department of Health and Social Care requested that NHS England commission the whole LeDeR programme. The report is an independent document, which is very important because we are talking about people’s lives and about deaths that could have been prevented. It is really important that the work is done by an independent group and that it is carefully scrutinised, and that that scrutiny and work to look at the recommendations—[Interruption.] If the shadow Minister would like to bob up and ask some questions, I will happily answer them, but if she is going to keep murmuring from a sedentary position, I will not be able to address anything that she says.It is so important to do this process in an independent way, because we are talking about people’s lives. NHS England says that the LeDeR report has not been published yet because it contains some serious recommendations, as have other such reports, and NHS England needs to make sure that the correct people will be responsible for implementing those recommendations and that the document can be scrutinised in the correct way before it is published. I understand that the shadow Minister is always keen to get things published as quickly as possible, and not always with the benefit of their being done as thoroughly as possible, but in this case we will not be pushed. This is an independent document and I cannot control when it will be published, but the shadow Minister can rest assured that when it is published, I will be happy to answer any questions that arise from it.Members will feel, as I do, that recent press reports are a clear indication that we need to do more on this, and I assure the House that we recognise that. The LeDeR programme confirms how seriously we take the issue of premature mortality and differences in life expectancy. We will continue to work with partners across Government and throughout the health and social care system to consider any recommendations that improve care for people with learning disabilities and autism and address the shameful inequalities that they experience. Everybody has a right to expect effective, compassionate and dignified care. If someone has a learning disability, their expectations should be no different.
- I share the concern of the hon. Member for Worsley and Eccles South (Barbara Keeley) and the Minister about the fact that it appears that at least 19 patients had “do not resuscitate” orders specifically because of their learning disabilities. I welcome the fact that the Minister has made it clear that there will be an immediate notice to remind clinicians that that should never be a reason to not resuscitate a patient. May I ask her to go further, though? My understanding is that doctors should make “do not resuscitate” decisions only after a full discussion with their patient. It appears that, in these cases—without wishing to prejudge them—a doctor has made that decision without having had that discussion. Will the Minister also make it clear in her communication that the assumption should be that someone with a learning disability is just as capable of making these difficult decisions as everyone else? Their lives are worth as much as everyone else’s. That should be the assumption of everybody working in the national health service.
- My right hon. Friend makes a perfect point. As I have said, I will not go into the details of the report—the independent report—that have been leaked and that have not yet been published. However, we are very clear that treatment decisions must be based on objective information and should never, ever be based on assumptions about a person’s quality of life. We are very clear that a learning disability should never be used as a reason for a “do not resuscitate” notice. We will take steps to remind doctors of their responsibilities to ensure that they provide the same level of care for people with a learning disability as they do for others. He is absolutely right to point out that family members’ and personal opinion should always be taken into consideration and that no one’s life should ever be undervalued in this way.
- I congratulate my hon. Friend the Member for Worsley and Eccles South (Barbara Keeley) on securing this urgent question and you, Mr Speaker, on granting it. This is a mess. The Minister talked about the training that is expected to happen. Will she set out when the autism and learning disability training, on which this Government have recently consulted, will come into effect?
- I thank the hon. Lady for her question. This very thorough consultation has received more than 5,000 responses. It has very recently concluded, and we are now going through those consultation responses, some of which are quite detailed. We hope to respond in the next two or three months to set out how we would like to move forward on this.
- This question is similar to the “do not resuscitate” one. I am aware that a number of practitioners use seclusion, segregation and restraint against patients in the system. What is the Minister doing to stop that happening?
- This is really important. We have seen an increase in reports of segregation and restraint, but that is partly because we have seen much better recording of the data. That is also very important, because we need to understand where people are being kept in seclusion or restrained inappropriately. The Secretary of State has asked the Care Quality Commission to review the matter and make recommendations about the use of restrictive interventions in settings that provide all sorts of residential care. The first part of that review will be reporting back very shortly.
- I welcome the Minister’s clear statement that it is wholly unacceptable that people with learning disabilities continue to experience much shorter life expectancy. It is wholly unacceptable, but the problem is that we have all been saying this for years and nothing ever changes. We do not appear to be capable of learning the lessons that she says are necessary. One problem is that people with learning disabilities are often under the care of people who do not have the training necessary to understand the interaction between physical health conditions and learning disability. That is often the cause of that premature mortality. I brought together a group of clinicians who make the case for a new specialty in learning disability so that we have people who understand those crucial interactions between physical ill health and learning disability. Will the Minister meet me and those clinicians so that we can really understand how we can start to make a difference here rather than continuing to say that it is unacceptable and doing nothing effective about it?
- I start by saying that I am always very happy to meet the right hon. Gentleman because he has great expertise, knowledge and understanding of this field and often makes incredibly valuable suggestions. In response to his question, that is why the commitment to mandatory training for all health and care staff is absolutely vital. We should not forget that this is not just about medical professionals, but about people such as receptionists. The way that adults with learning disabilities and autism are treated by someone at the front desk of a health and care setting can immeasurably affect their interaction with that provider. That is why this training is so important, why we have consulted so widely on how to deliver it, and why we will set out some really coherent plans later on in the year.
- May I for one thank you, Mr Speaker, for allowing the House of Commons to turn the spotlight on people with learning disabilities? We should never miss an opportunity to talk about a part of our population whose problems are often swept under the carpet. That applies particularly to people with Down’s syndrome. We must proclaim that, in this country, there are no second-class citizens whatever disability a person might have, including Down’s syndrome. There are some countries, for instance Iceland, where there is virtual genocide—there is a 100% abortion rate for Down’s syndrome. Will the Minister proclaim now from the Dispatch Box that, if a person has Down’s syndrome, they are just as valued, just as loved, and just as cared for by society as anybody else?