Learning Disabilities Mortality Review

Baroness Keeley Excerpts

Wednesday 15th May 2019 Commons Chamber

[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—

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[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.