Learning Disabilities Mortality Review

Mark Harper Excerpts

Wednesday 15th May 2019 Commons Chamber

[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.