Learning Disabilities Mortality Review

Wednesday 15th May 2019 Commons Chamber

13:27

[Barbara Keeley (Worsley and Eccles South) (Lab)]

(Urgent Question): To ask the Secretary of State for Health and Social Care to make a statement on the learning disabilities mortality review.

[The Minister for Care (Caroline Dinenage)]

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—

[Mr Speaker]

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.

[Caroline Dinenage]

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.

[Mr Speaker]

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.

[Caroline Dinenage]

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.

[Barbara Keeley]

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?

Lastly, and most disgracefully—I am certainly going to mention this from the leaked report—the report says that over a period of two years, at least 19 people with learning disabilities who died had “learning disabilities” or “Down’s syndrome” given as the reason not to resuscitate them. A patient having a learning disability or Down’s syndrome is not a reason to put a “do not resuscitate” order on their care. Does the Minister agree that such an approach, if it exists, smacks of eugenics and is completely unacceptable? What action will she take to ensure that it does not continue?

[Caroline Dinenage]

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 have already stated that I do not intend to comment on the specifics of the leaked bits of the document, which is independent and has not yet been published. However, like other Members, I am particularly concerned about any suggestion that doctors have recorded learning disability or Down’s syndrome as the reason for a “do not attempt cardio-pulmonary resuscitation” order—a DNACPR, as they call it. People with a learning disability have exactly the same right to enjoy a meaningful life as everyone else, and their disability should never, ever be used as an acceptable reason for a “do not resuscitate” order. We are taking immediate steps to ensure that doctors are reminded of their responsibilities and avoid any form of discrimination. [Interruption.] The shadow Minister says from a sedentary position that doctors should not need reminding. That is the whole point of commissioning the LeDeR review. Sometimes there are systematic or cultural ways of going about things in everyday life, whether in the medical profession or anywhere else, that mean people are not treated with the dignity and respect that they deserve. The whole point of the LeDeR review is to learn from every single preventable death and to make sure that no one else suffers in the same way.

The LeDeR programme published its second annual report in May 2018, and the Government’s response, which we published in September 2018, set out a range of actions for the Department of Health and Social Care, NHS England and other national partners to help to reduce premature mortality and improve outcomes for people with learning disabilities. Many of those actions have now been completed—for example, we recently closed our consultation exercise on plans to introduce mandatory training in learning disability and autism awareness for health and care staff, and we will set out plans to move forward on that later in the year.

The latest report will no doubt reinforce what we already know: that the Government and our health and care system need to do more to ensure that people with a learning disability receive good-quality, informed and safe care. There has been a significant improvement—there has been a tenfold increase in the number of LeDeR review cases that have been covered, the backlog has improved, and in 2018-19 NHS England invested an additional £1.4 million to support the local teams to accelerate the process, as well as to train 2,100 experts to carry out reviews. The process is new, but we are pushing forward and putting in the necessary resources to make sure that we deliver on time. The LeDeR programme is there to help to achieve what we have set out, which is to make sure that those with a learning disability should never expect to receive worse health outcomes. We will respond to the full version of the report as soon as it is published.

[Mr Mark Harper (Forest of Dean) (Con)]

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.

[Caroline Dinenage]

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.

[Marsha De Cordova (Battersea) (Lab)]

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?

[Caroline Dinenage]

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.

[John Howell (Henley) (Con)]

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?

[Caroline Dinenage]

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.

[Norman Lamb (North Norfolk) (LD)]

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?

[Caroline Dinenage]

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.

[Sir Edward Leigh (Gainsborough) (Con)]

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?

[Caroline Dinenage]

I do not think I could have said it any better than my right hon. Friend. Mencap has put out a fantastic tweet featuring a particularly special young man who has Down’s syndrome. He is incredibly brilliant in the way that he articulates how very proud he is to live with Down’s syndrome and to be just as useful, just as important and just as special as everybody else, and how that makes him just as much a valued member of society as others—in fact probably more so.

[Anneliese Dodds (Oxford East) (Lab/Co-op)]

It is six years since Connor Sparrowhawk died, yet these leaks—yes, leaks—indicate that 8% of the cases reviewed showed that people with learning disabilities had been harmed or even killed by the care that they received. What was meant to be helping them was actually harming them. That raises enormous questions, of course, about all the cases that have not been reviewed. The Minister said that action is being taken to deal with the backlog, but she knows that it is enormous. She must also know that the time that elapses after a death really counts for the amount of learning and the amount of change that will follow. Will she tell us exactly what she is doing to speed up the review of these cases, as it is just so important?

[Caroline Dinenage]

The hon. Lady is absolutely right to raise the case of Connor Sparrowhawk, which was an absolutely tragic lack of care. I have met his mum, Dr Sara Ryan, and I greatly value her feedback on how we move forward with the LeDeR programme, because she has such an important insight into the matter. As I have said, NHS England is putting in additional funding to clear the backlog, and the NHS planning guidance for 2019-20 is very clear that clinical commissioning groups must have robust plans in place to make sure that LeDeR reviews are undertaken within six months of a notification of death in their local area. The resources are going in and the guidelines are there to ensure that that happens.

[Bob Blackman (Harrow East) (Con)]

I must declare an interest: my sister was born with profound learning disabilities. Later this year, hopefully, she will celebrate her 60th birthday. During my lifetime, I have seen far too many young people with learning disabilities die premature deaths. One of the biggest problems is when they suffer a physical problem and have to go to A&E, or through the primary care system. If a doctor or surgeon diagnoses that individual, part and parcel of the communication is talking to them and getting a response. People with profound learning disabilities cannot do that, so doctors often issue DNRs—I have personal experience of this—on people who are perfectly capable of having a perfectly good quality of life. Can my hon. Friend ensure that individuals who have profound disabilities have a named person from the health service who will give advice before any such decisions are made?

[Caroline Dinenage]

I am grateful to my hon. Friend for his impassioned plea; he makes an excellent point. We have spoken quite comprehensively today about how important it is that people with learning disabilities are never written off as a “do not resuscitate”, because that is absolutely wrong. I can tell him—I think he will find this useful—that we have introduced annual GP health checks for people with a learning disability to help to recognise these health inequalities, so that some long-term health conditions can be picked up much earlier and diagnosed more quickly, and prevention can be put in place much sooner.

[Diana Johnson (Kingston upon Hull North) (Lab)]

I wonder if the Minister recognises that for many families the review feels like the NHS marking its own homework, and that there needs to be more of an independent body to look at all the cases to give the reassurance that those families want.

[Caroline Dinenage]

I do recognise what the hon. Lady is saying. It is difficult to know how best to analyse something as tragic as a death—how to bring forward all the relevant expertise. That is why NHS England works with the University of Bristol on this programme. It is a very new programme—the report to be published shortly will only be the third one—and we are always open to ways in which it can be improved and seen to be more independent, more thorough and to make more difference.

[Nigel Huddleston (Mid Worcestershire) (Con)]

I welcome the review and understand the Minister’s reluctance to comment on rumours and leaks, but as a point of principle does she agree that access to specialist services and care, as well as early and accurate diagnosis, is really important and should be consistently applied across the country? Will she therefore assure me that people with learning disabilities in Worcestershire will receive the same good service as people elsewhere in the country—in Birmingham or London, for example?

[Caroline Dinenage]

My hon. Friend is absolutely right that nobody with a learning disability, autism or any other condition should expect to receive worse care. Everybody should expect the same level of quality care, no matter who they are or where in the country they live. That is what we are working towards, and learning from deaths is a key element of helping to deliver that aim.

[Steve McCabe (Birmingham, Selly Oak) (Lab)]

I am pleased to hear the Minister condemn “do not resuscitate” instructions based on a person having a learning disability, but surely this situation is not a matter of mild neglect requiring a reminder letter; this is a grave abuse of power perpetrated on some of the most vulnerable people in our society. Does it not require disciplinary action?

[Caroline Dinenage]

The hon. Gentleman has partly tapped into my frustration with the fact that I am here today commenting on leaks of a report that has not yet been published, rather than on the full report, which, when it comes out, will provide clear recommendations as to how we can move forward on this matter. As I have said, we are already writing to reinforce the message that should be self-evident—that learning disabilities should never be a reason for a “do not resuscitate”. When the report is finally published, it will include a very well-considered recommendation as to how we tackle this issue in a way that will ensure that this situation will never happen in future.

[Chi Onwurah (Newcastle upon Tyne Central) (Lab)]

Thank you for allowing this urgent question, Mr Speaker. We should acknowledge that those with learning disabilities have not had their fair share of parliamentary time, and this review into learning disabilities mortality will be a matter of huge concern to them, their friends and their families. The Minister says that resources are going into the review. Will she confirm that a review will be allocated to everybody who has reported a death, and that the impact on access to care for people with learning disabilities from socioeconomically deprived backgrounds is being specifically considered?

[Caroline Dinenage]

The hon. Lady is absolutely right that we need to have much more discussions like this in this place because health inequalities need to be addressed and we need to be outspoken about them. The whole point of asking NHS England to commission this review is to think about how we address the most severe of these inequalities, which is when people die early or in a way that might have been preventable. We want to ensure that every single death of a person with a learning disability—whether or not people regard that it was preventable from the outset—is looked at very carefully. People should always have that reassurance, regardless of where they live and what kind of socioeconomic background they come from.

[Cat Smith (Lancaster and Fleetwood) (Lab)]

Vaccinations are one of the best ways to protect health and reduce mortality, and I was pleased that the Government pledged to increase the uptake among people with learning disabilities. Will the Minister update the House as to what progress she is making with that Government pledge?

[Caroline Dinenage]

The hon. Lady is right that vaccinations are very important. We have introduced the annual health check for people with learning disabilities because it is an opportunity for them to have a one to one with their GP to check that all things such as vaccinations are up to date, but also to see whether there are any other long-term health issues that have not yet been spotted. I speak about this from an entirely selfish point of view because a dear friend of mine—my self-appointed best friend, who was one of my constituents—very sadly died last year from a form of cancer that would have been curable had her case been picked up earlier. That is why health checks for people with learning disabilities are vital.