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Learning Disabilities Mortality Review

Volume 640: debated on Tuesday 8 May 2018

To ask the Secretary of State for Health and Social Care to make a statement on the learning disabilities mortality review. [Interruption.]

Order. There is a certain amount of chuntering from a sedentary position. The Secretary of State has been with us, but Minister Caroline Dinenage will answer the urgent question, and we look forward to her answer.

The Government are absolutely committed to reducing the number of people with learning disabilities whose deaths may have been preventable and have pledged to do so with different health and care interventions. The learning disabilities mortality review programme was established in June 2015; it was commissioned by NHS England to support local areas in England to review the deaths of people with a learning disability. Its aims were to identify common themes and learning points, and to provide support to local areas in their development of action plans to take forward the lessons learned.

On 4 May, the University of Bristol published its first annual report of the LeDeR programme, covering the period from July 2016 to November 2017. The report included 1,311 deaths that were notified to the programme and set out nine recommendations based on the 103 reviews completed in this period. The Government welcome the report’s recommendations and support NHS England’s funding of the programme for a further year at £1.4 million. We are already taking steps to address the concerns raised, but the early lessons from the programme will continue to feed into our work, and that of our partners, to reduce premature mortality and improve the quality of services for people with learning disabilities.

Mr Speaker, I think it is disgraceful that the Secretary of State has just run out of the Chamber, rather than answering this question himself—it is disgraceful.

Seven years after Winterbourne View and five years since the avoidable death of Connor Sparrowhawk, the findings of the review show a much worse picture than previous reports about the early deaths of people with learning disabilities. One in eight of the deaths reviewed showed that there had been abuse, neglect, delays in treatment or gaps in care. Women with a learning disability are dying 29 years younger than the general population, and men with a learning disability are dying 23 years younger. Some 28% of the deaths reviewed had occurred before the age of 50, compared with just 5% of the general population who had died by that age.

The Secretary of State announced to the House in December 2016 that he would ask the review for annual reports on its findings, so why was a review of this importance published during the recess, before a bank holiday weekend in the middle of local election results, giving Members little chance to scrutinise its findings? When asked about the report on the “Today” programme on Radio 4, Connor Sparrowhawk’s mother, Dr Sara Ryan, said that she was

“absolutely disgusted by the report”

and that the way it had been published at the beginning of a bank holiday weekend

“shows the disrespect and disregard”

there is for the scandalous position of people with learning disabilities shown in the report.

Only 103 of 1,300 cases passed for review between July 2016 and November 2017 have been reviewed. That is a paltry number. The report cites a lack of local capacity, inadequate training for people completing mortality reviews and staff not having enough time away from their duties to complete a review.

If there are issues around capacity and training, what is NHS England doing to rectify this? Sir Stephen Bubb, who wrote the review into abuse at Winterbourne View, said this in response to the report:

“there can be no community more abused and neglected than people with learning disabilities and their families. How many more deaths before we tackle this injustice?”

Dr Sara Ryan said:

“things have actually got worse than they were 10 years ago”.

What action will the Government take to show the families of people with learning disabilities that their relatives’ lives do count?

I thank the hon. Lady for raising this issue; the report makes for very troubling reading.

On the date of publication, the hon. Lady will be aware that this was an independent report prepared by the University of Bristol and commissioned by NHS England, which wanted to look into this really important issue, and because it was an independent report, it did not actually alert us to publication, so we had no more notice than she did. We are investigating through NHS England and others why that happened.[Official Report, 9 May 2018, Vol. 640, c. 8MC.]

As the report clearly identifies, there is still more work to do, and we will work with partners to see how the recommendations may be implemented. We are committed to learning from every avoidable death to ensure that such terrible tragedies are avoided in the future. She mentions Dr Sara Ryan, whose son, Connor Sparrowhawk, died in such tragic circumstances in my own Southern Health Trust area. She and other parents like her are testimony to the incredible dedication of people who have worked so hard to get justice for their loved ones at a time when they feel least able to do so.

We have done several things already. We have introduced a new legal requirement so that from June every NHS trust will have to publish data on avoidable deaths, including for people with a learning disability, and provide evidence of learning and improvements. We are the first healthcare system in the world to publish estimates of how many people have died as a result of problems in their care. Learning from the review is also informing the development of the pathways of care published by NHS England and the RightCare programme, which is tailored to the needs of people with learning disabilities. Pathways on epilepsy, sepsis and respiratory conditions will be published later this year.

We have introduced the learning disability annual health checks scheme to help ensure that undiagnosed health conditions can be identified early. The uptake of preventive care has been promoted and improved, while the establishing of trust between doctors and patients is providing better continuity of care. We have also supported workforce development by commissioning the development of learning disabilities core skills education and training framework, which sets out the essential skills and knowledge for all staff involved in learning disability care.

As I said, the report makes for troubling reading, but we asked NHS England to commission it so that we might learn from these deaths and make sure that trusts up and down the country are better equipped to prevent them from happening in the future.

Every preventable death brings personal tragedy, as was highlighted in a 2016 report by Autistica, the autism charity, entitled “Personal tragedies, public crisis”. Autistic adults with a learning disability are 40 times more likely to die prematurely. That is why I welcomed the Government’s announcement in March that reducing the gap in life expectancy for autistic people was one of the top autism priorities in the “Think Autism” strategy governance refresh under provisions in the Autism Act 2009. How will the Minister implement those provisions?

I pay tribute to my right hon. Friend, whose incredible work over many years campaigning on behalf of autistic people up and down the country has made a magnificent difference. She is right to raise this issue. It is of course unacceptable that people with autism have poorer health outcomes, and we are determined to address this. I meet regularly with representative groups and we take on board all their comments about how they would like to see the situation improved.

The report makes tragic reading. Some of our most vulnerable citizens are four times more likely to die prematurely than the general population, and there have been many avoidable deaths because of systemic failures. The situation cannot continue.

Let me ask the Minister three questions. First, will she look at the Scottish patient safety programme, a national programme that has been running since 2008 and is achieving good outcomes? Secondly, given that the Health and Social Care Committee has heard that learning disability nurses are very scarce, will she redouble the efforts to ensure that training for and recruitment to those roles are prioritised? Picking up symptoms early may be crucial to the prevention of morbidity. Thirdly, staff turnaround in social care is a real issue. Social care staff who know a client well, and can notice early changes such as signs of illness and report them timeously to ensure prevention, are crucial, and consistency in care is therefore critical. How will that be addressed?

The hon. Lady is right to raise those points. The Government are absolutely committed to reducing the number of people with learning disabilities whose deaths might have been preventable had there been different health and care interventions. That is why we set up the learning from deaths programme, and have commissioned an investigation of the issue. We are determined not only to learn from every single one of these tragic and avoidable deaths, but to share that learning with those in trusts up and down the country so that they can take a clear look at what is going on under their noses, and ensure that the terrible incidents that we have seen in the past do not happen again.

The hon. Lady was wise to raise the issue of training. It is important to have specialist practitioners, but it is also important to ensure that all healthcare staff, throughout the country, have the training that they need in order to recognise and support the needs of people with learning disabilities. That is something that we have done very successfully with dementia: we record the number of staff in the country who have received tier 1 and tier 2 training, and we are looking into how we can extend that to address the issues of people with learning disabilities.

In learning lessons from these truly horrific cases, will the Minister commit herself to working closely with the charities that do such incredible work to support people with learning disabilities and their families?

My right hon. Friend is absolutely right. Charities and voluntary organisations all over the country do remarkable work, supporting not only people with learning disabilities but their families and their carers, for whom instances involving their health and wellbeing can be incredibly distressing.

The Minister’s statement quite properly focused on hospitals, but does she acknowledge that charities dealing with people with learning disabilities will be among the worst affected by the £400 million back-pay charge? Will she try to ensure that the Government absorb that cost, so that the improvements in hospitals are not upset by a deterioration outside, in communities?

We are looking very carefully at the issue of sleep-ins, and are communicating with social care providers and others. It is important to recognise that we need to support not only the sector as a whole, but the many low-paid workers within it. We will present more proposals on sleep-ins shortly.

The biggest challenge that many learning-disabled people have is simply making their voices heard. Their legal entitlement to advocacy is not always upheld by health professionals, who often misunderstand that entitlement. Will the Minister look into the commissioning of advocacy services, and, indeed, the understanding of the Equality Act 2010 among NHS staff, to ensure that more learning-disabled people have access to organisations such as Speakeasy Advocacy in Basingstoke, which supports more than 600 people with learning disabilities in north Hampshire, helping to give them the voice that they so badly need?

My right hon. Friend is a fantastic champion for equality issues in her role as Chair of the Women and Equalities Committee. I take on board everything that she has said, and I will certainly look more closely at the issue that she has raised.

The true disgrace is that none of this is new and we have been here before. Five years ago the Government set out their promises to tackle this appalling death by indifference, yet we have seen no progress. Can the Minister tell me how many hospitals regularly ask the four questions on treatment of people with learning disabilities set out by Sir Mike Richards, how many clinical commissioning groups check and monitor how many health checks and health plans people have in place, and what Health Education England has done to put the training in place to try to start turning the tide on this appalling situation?

The hon. Lady is right that this issue was identified a few years ago. The report was commissioned in 2015 and has been in the making since then. There was a Care Quality Commission report in 2016 which concluded that bereaved families do not often experience openness and transparency. Everything we have done up until this point—the mortality review, the learning from deaths programme and all the other things we have put in place with regard to the transforming care programme and annual health checks—is geared towards addressing this very issue.

The learning disabilities mortality review programme sets out the stark and unacceptable health inequalities faced by those with learning disability, and I welcome the steps the Minister has set out today. May I press her further, however, on the point about workforce shortfall? What is she going to do not only about recruitment, but about retention of the vital workforce in both health and social care?

My hon. Friend is absolutely right that the workforce in our health and social care system is absolutely fundamental to the way we look after people in our country. We must be able to attract, recruit, retain and bring back into the system people who have left it. We are currently compiling a workforce strategy jointly between Skills for Care and Health Education England, and it will be reporting later in the year.

Parents come to me all the time expressing their grave concerns about what will happen to their children with learning difficulties and disabilities if they are not around to support them. In my constituency I have had reports of instances of bullying from other people in the community, of targeting by drug dealers and of exploitation by private companies such as mobile phone providers and utility companies, and that there are difficulties accessing mental health support. If the Minister is truly keen to show the Government’s desire to improve on the current appalling state of affairs, do not early support and state responsibilities need to be looked at more closely as well?

The hon. Lady is right to make the point more broadly, rather than just about the healthcare outcomes for people with learning disabilities. We need to look at how we protect people more broadly, and this issue must particularly be a terrible worry for the ageing parents. I take on board what the hon. Lady said, and we will definitely feed it into the system to see what more we can do in support.

The CQC conducted an inquiry into this issue in 2016 and has a responsibility to check local healthcare provision to ensure it is up to speed. When local trusts start publishing their learning from deaths data from June, the CQC will be able to inspect them on how they bring the data forward and to judge them on that information.

Societies and Governments should be judged by how they treat the most vulnerable. As well as avoidable deaths of people with learning disability, we have savage cuts to services across the country, so they have no constructive positive activities to participate in, and we have a complete dearth of employment opportunities now for people with learning disabilities. I started my working life 36 years ago working with people with learning disabilities, and we made tremendous progress over a 20-year period. It is a source of tremendous sadness that we have gone backwards in the last 10 years in the support that such people and their families are receiving. It is shameful. We need a cross-Government approach and we need action, not strategies.

It is sad that the hon. Gentleman has sought to politicise this issue. It is nothing to do with funding cuts or cost-saving measures. We have actually invested more money into this programme. We are the first Government in the world to publish a learning from deaths programme so that healthcare trusts are held accountable and have to publish their data on people who die unnecessarily in their care. Making short-sighted party political points is therefore very unfair and does not get to the heart of the issue, which is about supporting people with learning disabilities and making sure that their health outcomes are the same as those of the population as a whole.

The all-party parliamentary group on learning disability, which I have the honour to chair, will be looking at this area of policy later this year. Mencap, which provides the group’s secretariat, has a Treat Me Well campaign, which is about improving the position, and I know it is keen to work with the NHS. Drawing on some of the other questions, may I ask the Minister what she can do to get the NHS and all the providers to act with a real sense of urgency in making improvements in this regard with the speed that we would like?

My right hon. Friend is right to raise the Mencap report, because in many cases it reflects the recommendations that have been put forward in this particular report. The mandate to NHS England requires a reduction in the health gap between people with mental health problems, learning disabilities and autism and the population as a whole, and requests support for them to live full, healthy and independent lives. That is something that NHS England has a mandate to deliver, and we of course support it in doing that.

If it is a crime to politicise the vulnerability of some people and the Government’s cuts, I stand guilty as charged. Further to the question from my hon. Friend the Member for Leicester West (Liz Kendall), what we have seen since 2013 is the complete decimation of services working together on the ground. This is a local government and health issue locally, so may I press the Minister to tell us what action will be taken to make this happen at local level?

It is not about that. This is about inquiring into the deaths of people who have died in our care. Despite all the really difficult decisions we have had to make to deal with the financial challenges this country faced, which the hon. Lady’s party will be well aware of, we have made progress on this issue in terms of transforming care and the healthcare checks on people with learning disabilities, and this very report on the learning from deaths programme proves how absolutely committed we are to ensuring that not one single one of those deaths goes unrecognised or uninvestigated.

Surely the quicker integration of the NHS with social care across the board will help to solve some of these problems. Does the Minister agree with that?

Yes, my hon. Friend is absolutely right. The integration of health and social care services is absolutely vital, and that is why we are so delighted that we have renamed the Department as the Department of Health and Social Care. That has to be more than just a title; it has to be a statement of intent.

Last October, I secured a Westminster Hall debate on supporting and safeguarding adults with learning disabilities, following the horrendous murder of my constituent, Lee Irving. Following that debate, what reassurance can the Minister give me that one of the major lessons coming out of that case—that families must be involved in the decision making about a person’s care—has been learned?

I thank the hon. Lady for raising that case. It was a truly horrible case. The Mental Capacity Act 2005 is all about making sure that we have care that is centred around the individual, and that parents’, families’ and carers’ thoughts are taken into consideration when making decisions about how we care for people.

We can be confident that the right legal framework is now in place, with the Equality Act 2010 and the Health and Social Care Act 2012, but what further steps can the Minister take to ensure that those who work in NHS organisations are aware of them?

Of course it is the responsibility of individual employers to ensure that their staff are appropriately trained and competent to fulfil the responsibilities that we ask of them, but we have commissioned Health Education England, Skills for Health and Skills for Care to develop a learning disabilities core skills education and training framework, which sets out a tiered approach to that kind of training and how it needs to be improved.

This review should shame us all. If we reflect on Sir Stephen Bubb’s final reports from two years ago in 2016, following a report he wrote in 2014 when there had been no progress, we can see that he put forward 10 recommendations. We have seen little or no progress on any of those recommendations. One of them recommended the introduction of the commissioner for learning disabilities, and we need that to happen if we are to see real progress and change. Will the Minister now take that important recommendation forward?

The hon. Lady is right to raise that, but I will point out that we commissioned the review to examine the situation. We are not running away from our responsibilities; we are standing up and facing them. We are allowing them to be entirely transparent and out there in the public domain for people to judge. The deaths that the report covered come from the period starting July 2016, so they are historical, but it is important that they are examined. The hon. Lady is right to mention the issue of the commissioner, and I will look at that.

While the review’s conclusions make difficult reading in some ways, it is welcome that it happened, given that it is a world first and that it gives us the chance to have this discussion. What work will be done with councils and other third sector partners on taking away some of the lessons that can be learned from the review?

My hon. Friend is right to say that this is the first time in the world that such a review has been done. We are the first to have a learning from deaths programme and a Healthcare Safety Investigation Branch, so we take such things incredibly seriously. The whole point of the learning disabilities mortality reviews is that the information will be disseminated to local trusts so that they can make plans to avoid such disastrous, tragic incidents happening in the future.

The gap in life expectancy for people with learning disabilities is deeply troubling. Last week, and at Health questions earlier, the House discussed cancer screening and the need to improve screening opportunities. The Minister will know that screening participation rates among people with learning disabilities are far below those for the general population. What specific actions is she taking to address that gap?

The hon. Lady is right to raise the inequalities of diagnosis of conditions and illnesses for which catching them early can mean the difference between life and death. That is why we have introduced annual health checks for people with learning disabilities. They mark a huge step forward and will help to reduce recognised health inequalities and ensure that reasonably adjusted care needs are much better communicated to other NHS partners.

As a Bristol-area MP, I thank the University of Bristol for its rigorous review, which marks a milestone in increased transparency and in setting out appalling healthcare inequalities. I note with interest that the review recommends efforts to improve awareness of the signs of sepsis and pneumonia in patients with learning disabilities in the NHS. Will the Minister reassure the House that the NHS will take up that recommendation urgently?

Yes. Specific work on early detection of the symptoms of sepsis, pneumonia, constipation and epilepsy and on the effective use of the Mental Capacity Act 2005 in urgent care settings is already under way.

The front page of the report is clearly dated December 2017, so will the Minister clarify and explain why, as she has stated today, her Department did not have sight of it prior to its publication?

I completely hold my hands up. I am not trying to mislead the House in any way. It is an independent document and the University of Bristol decided when it was going to be published. It was published on Friday without permission from or any kind of communication with the Department of Health and Social Care. I do not know what communication the university had with NHS England, but no information was passed to us. The beauty of having an independent document is that it can be published when the organisation sees fit and the Government will have to respond to it.[Official Report, 9 May 2018, Vol. 640, c. 8MC.]

During my career as a paediatrician, I have seen huge improvements in the care of children and young people with severe and moderate learning disability, many of whom have survived into adulthood when that would not have been the case years ago. Owing to the association between severe and moderate learning disability and other medical problems that may limit someone’s lifespan, it is unlikely to ever be equal to that of the general population, but we should always ensure that the care of the most vulnerable in society is as good as it can be, and I welcome the steps that the Minister is taking to ensure that it is. Such people are cared for jointly in hospitals and in the community, so will she confirm that hospitals and community care will work together following such reviews?

This is something that my hon. Friend, as a healthcare professional, obviously knows an awful lot about. She is right that a person having the ability to communicate, understand and identify when they do not feel well is important. These annual health checks, which are available to children from the age of 14 and into adulthood, are important because they enable any healthcare issues to be disseminated and communicated much more effectively between different healthcare and other providers.

Can the Minister guarantee that future publications of such sensitive reports will be done in a timely manner and given proper parliamentary scrutiny?

I will certainly put that request to NHS England. It was not in our interest for the report to be published on Friday. This is an independent review, but it would have been much better for us to have had foreknowledge of its publication. We would then have brought a statement to the House. We will pass on the hon. Gentleman’s comments to NHS England.

Sepsis has already been mentioned by my hon. Friend the Member for Kingswood (Chris Skidmore). Is the Minister aware that the mortality rate for sepsis in the Worcestershire Acute Hospitals NHS Trust has experienced a remarkable turnaround from 49% above the national average to 26% below the national average? Will she look at some of the best practice that is down to the hard work of the doctors and nurses, the awareness-raising campaign and all the other education work happening in that hospital, and disseminate it more widely to benefit such patients?

I thank my hon. Friend for raising that important issue. Sepsis is a silent killer. If not identified early, it can lead to life-changing implications or death. She is right that we have made great steps in addressing sepsis. Only a couple of weeks ago, we launched a new e-learning tool to help healthcare professionals better identify the symptoms of sepsis, particularly in children, so they can tackle it early.

The Minister has spoken a lot about being committed to improvements in this area. Does she think it is acceptable that she did not know a report in this important area was to be published on Friday? Why did she not come to make a statement today, rather than waiting to be summoned to the House by my hon. Friend the Member for Worsley and Eccles South (Barbara Keeley)?

What is unacceptable is that people with learning disabilities have poorer health outcomes than the rest of the population, which is why NHS England commissioned this piece of work and why we are determined to address it.

What steps is the Minister taking to ensure that people with learning disabilities can confidently access good quality sexual health services? What work is she doing with her counterparts in the Department for Education to ensure that young people with learning disabilities receive excellent sex and relationships education?

This is an important aspect, and I will get in touch with the hon. Lady with a more detailed answer to her question.

This is a shocking report, and its conclusions demean us all. A lot of people on both sides of the Chamber have asked the Minister and her Department to come up with some actions. Rather than just talking about it, will she commit today to coming back to the House with a specific action plan to prevent and change what has been an absolutely shocking situation for many decades?

The hon. Gentleman is right to say that this has been a shocking situation for many decades, which is exactly why this report was commissioned so that we can learn from past errors and identify how to stop them ever happening again. There are nine recommendations in this report, and we will work with NHS England on how to adopt every single one of them.