Transforming Care Programme

Thursday 5th July 2018 Commons Chamber

[Mr Speaker]

We now come to the Back-Bench motion on the future of the transforming care programme. I am pleased to say that the Member who is due to move the motion is in the Chamber. This is not a laughing matter, but, sadly, not many Members wish to speak in the debate, so it could finish early. Alternatively, the sheer breadth and depth of the learning of the right hon. Member for North Norfolk (Norman Lamb), together with his capacity to expatiate with great eloquence on it, could lead to a very full debate.

13:54

[Norman Lamb (North Norfolk) (LD)]

I beg to move,

That this House is concerned at the slow progress made under the Transforming Care programme, which was set up to improve the care and quality of life of children and adults with a learning disability and/or autism who display behaviour that challenges; recognises that a substantial number of people with learning disabilities remain trapped in, and continue to be inappropriately admitted to, Assessment and Treatment Units rather than living with support in the community; is further concerned at the lack of capacity within community services; notes evidence of the neglect, abuse, poor care, and premature deaths of people with learning disabilities; believes that the Transforming Care programme is unlikely to realise the ambitions set out in the Building the Right Support strategy before it ends in March 2019; calls on the Government to establish, prioritise, and adequately resource a successor programme that delivers a shift away from institutional care by investing in community services across education, health and social care; and further calls on the Government to ensure that such a programme is based on lifelong support that protects people’s human rights and promotes their independence and wellbeing.

May I thank the Backbench Business Committee for facilitating this important debate? Although the number of Members who have indicated a desire to speak is low, this incredibly important issue deserves to be debated in the House. I thank the hon. Member for Dulwich and West Norwood (Helen Hayes), together with other Members, for joining me in making the application for the debate. I have worked very closely with her on this issue, which we both care very much about.

I thank a number of voluntary sector organisations that have been incredibly helpful in preparing for this debate. I particularly want to mention the Challenging Behaviour Foundation, which is led by the very impressive Viv Cooper, as well as Mencap, the National Autistic Society, the Voluntary Organisations Disability Group and Shared Lives Plus.

It is perhaps sobering that we are debating this issue on the 70th anniversary of the NHS. I say that as someone who is a very strong supporter of the NHS, but for the people we are talking about in this debate, the record has not been a good one. The system has let down too many individuals and too many families. On this very significant day, it is important to recognise that the NHS has a lot of work to do to repair the damage that has been done to so many people, and to treat them properly.

The origins of the transforming care programme lie in the horror of the Winterbourne View scandal, which Members will remember. In that private hospital, people with learning disabilities and autism were abused and assaulted behind locked doors over a sustained period, and that was only revealed by brave whistleblowers. In the aftermath of that horror, I invited the families of those who had been patients in Winterbourne View to come to the Department of Health—I became a Health Minister in September 2012—to talk to me about their concerns.

I clearly remember a father called Steve Sollars, who talked to me about how he had watched his son become, in his words, increasingly zombie-like as he was pumped full of anti-psychotic drugs. Steve described how he tried to complain to the local authority and the primary care trust, as it was in those days, and said that he was just completely ignored. It really struck home when he said, “I felt guilty that I couldn’t do anything for my son.” I was left thinking how dreadful it was that we had got to a position in which state agencies had left an individual—a father—feeling guilty because they were ignoring his pleas for something to be done.

In the following months and years, I met some other parents of individuals trapped in hospital—sometimes in unattractive institutions—for long periods, all of whom felt that no one was listening to them. I refer in particular to Phill Wills, who campaigned brilliantly on behalf of his son Josh, who was stuck in a hospital in Birmingham for more than two years. The family live in Cornwall, so they had to make an incredible journey just to maintain contact with their little son.

I also met Shahana Hussein, the aunt of a girl called Fauzia, who was in St Andrew’s in Northampton. She talked to me about her fears of how her niece appeared to be trapped there. She was anxious that that might be her life course, and that she would never emerge from that place. I met Lynne McCarrick, whose son Chris had been stuck in Calderstones undergoing inappropriate treatment for a very long time, and Lorna and Sid, the parents of Simone, who is still stuck in hospital nine years after her first admission. For much of that time, she has been a long distance away from home, therefore making it impossible for her parents to visit, which is shocking in this day and age. Many of those families are present for today’s debate, and they remain extremely concerned about their loved ones and others who remain trapped in institutions.

The conclusion that I reached at that time, which I still hold, is that individuals’ human rights are routinely ignored and breached in serious ways. Someone who is convicted of a criminal offence and then sent to prison—other than the cohort who have received indeterminate sentences—generally knows the date of their release. However, people who go into institutions and their families do not know a release date, and many people stay in those institutions for much of their lives, which is shocking. To put it bluntly, they are treated as second-class citizens. I said that at the time, and I still say it now, because not enough has changed for any of us to be comfortable with the situation.

[Luciana Berger (Liverpool, Wavertree) (Lab/Co-op)]

I congratulate the right hon. Gentleman and my hon. Friend the Member for Dulwich and West Norwood (Helen Hayes) on the leadership they have shown by securing this debate through the Backbench Business Committee. The right hon. Gentleman said that this programme came out of the Winterbourne View scandal, which was back in 2011. Does he share my concern that we are discussing this issue seven years later in 2018 and yet thousands of people in our country—thousands!—are still in institutional care? It is an absolute disgrace that we find ourselves discussing this issue.

[Norman Lamb]

I completely agree. That sense of complete injustice and the denial of human rights still exists. Nothing much has changed, which is why the debate is so important, and I share the hon. Lady’s view that we should not tolerate this scandal. What makes the situation even worse is that this is not a demand for vast amounts of extra public money; it is about how public money is spent. Our demand is that money is spent in a way that respects people’s human rights and gives them the chance of a good, happy life in the community, with the support of care workers, friends and family, rather than being trapped in institutions. It is shocking that the situation for very many people has remained exactly the same as it was all those years ago.

[Mr Jim Cunningham (Coventry South) (Lab)]

As my hon. Friend the Member for Liverpool, Wavertree (Luciana Berger) said, it is shocking that it has taken seven years for us to get even this far. I have noticed that although on the one hand the national health service encourages whistleblowers, on the other hand it sometimes litigates to stop whistleblowers, so there is a contradiction. Does the right hon. Gentleman agree that if people had taken notice of whistleblowers, some of these things might never have happened?

[Norman Lamb]

I do agree, and that is another big subject that I will be pursuing further in the light of the Gosport inquiry, which I established when I was a Minister. In that case, brave nurses tried to blow the whistle in 1991, but they were shut down by management and unable to pursue their concerns. More than 456 people lost their lives as a result of the inappropriate prescribing of opioids, and that was because whistleblowers—brave staff members—were not listened to. In every part of our health service, we must ensure that people feel able to speak up and that they have the legal rights to do so.

The outcome of our deliberations in the Department was to establish the transforming care programme, which was published in December 2012. Interestingly, it was pursued as a concordat and an agreed programme of action. It was supported by an amazing array of organisations, all of whose logos appeared in the document, including—critically—NHS England. Every organisation that signed up to the programme committed to

“working together, with individuals and their families—

note the phrase “with individuals and their families”—

and with the groups that represent them, to deliver real change.”

That was in December 2012.

These organisations that had committed “to deliver real change” also stated:

“Our shared objective is to see the health and care system get to grips with past failings by listening to this very vulnerable group of people and their families, meeting their needs and working together to commission the range of support which will enable them to lead fulfilling and safe lives in their communities.”

To put it bluntly, there has been a shameful failure on that commitment to change, which simply has not happened for the majority of people involved.

At that time we were operating in a fog. No data had been collected historically on the numbers of people in beds in institutions, so we had to rely on periodic censuses to find out whether anything was changing. When we conducted a census about 18 months after the start of the programme, it was shocking to discover that there had effectively been no change—it was business as usual. The really disturbing thing was that many private sector organisations were making substantial investments in new facilities and delivering the wrong model of care. Why did those organisations have the confidence to make major million-pound investments in inappropriate care? It seems to me that to justify such investment, they must have had reassurance from somewhere in the system that things would carry on as they were. It was shocking to discover the extent to which it was simply business as usual.

[Luciana Berger]

I apologise if the right hon. Gentleman is going to come on to this, but I want to reflect on the reports commissioned by NHS England and Sir Stephen Bubb. Back in 2014, Sir Stephen was commissioned to write a report entitled “Winterbourne View – Time for Change”, yet nothing happened in the wake of that report, other than a closure programme that was published back in 2015, on which we have seen little progress. In February 2016, Sir Stephen Bubb published another report entitled “Time for Change – The Challenge Ahead”, which again demanded urgent action. Does the right hon. Gentleman share my concern that although those reports were commissioned, there was very little response or action taken?

[Norman Lamb]

Again, I entirely share the hon. Lady’s view. I work closely with Sir Stephen Bubb and we have exactly the same view about this. He and I attended a meeting about a year ago with NHS England to discuss progress, or the lack of it. The hon. Lady is right to say that there is a culture of looking at things again and again, and then doing nothing about the conclusions reached, which is wholly unacceptable.

At that time, three issues stood out, and they involved perverse incentives that acted to prevent change from happening. First—this is extraordinary—the person who was making the critical decision about whether an individual should stay in a bed or be discharged was, and still is, the clinician employed by the provider organisation that makes money out of the person staying in the bed. That total conflict of interest has never been confronted. As Minister, I kept asking NHS England to act to address that issue, but it has not yet been resolved. If a private sector organisation is earning £4,000 or £5,000 every week from someone being in a bed, there is a strong incentive to keep them in that bed. There is also an incentive for public sector organisations that want to maintain their existence, and that conflict of interest has never been confronted.

Secondly, there is a complete failure to invest properly in community provision. This is all about the need to shift resources from institutional care to community support; in other words, shifting money from NHS England to local authorities. The original transforming care concordat made it clear that there should be a pooling of resources between specialist commissioning, clinical commissioning groups and local authorities. As the hon. Member for Liverpool, Wavertree said, seven years on we are still waiting for a proper pooling of resources so that the money can actually shift and investment can be made in community resources.

The third insight I had at that time was the most extraordinary and wholly unacceptable exclusion of families and individuals from any decisions that were being made about their care. This, I am afraid, continues today. It is very far from the personalised care that the NHS and the Government say they are committed to. In the light of what I saw as our complete collective failure to deliver that change—this was the thing that caused me most distress as Minister—I decided that we had to come up with new proposals for new legal rights, so that families and individuals could challenge decisions that were being made behind their backs about where they would be cared for and treated.

Shortly before the 2015 general election, we published a Green Paper, I think in March 2015, called, “No Voice Unheard, No Right Ignored”. It has an important title, but I am afraid that those rights and those voices are still unheard and ignored because it has never been implemented. Nothing proposed in the Green Paper has been taken forward by the Government. We now have a review of the Mental Health Act 1983, so there is another opportunity to address the scandalous lack of rights for individuals, but the time it will take before there is any legislation will be very long—I doubt whether it will be in this Parliament—and families will just be left waiting.

At that time I worked with Sara Ryan, a remarkable woman and the mother of Connor Sparrowhawk, known as Laughing Boy. He was a young man in the “care” of Southern Health who lost his life while he was within its institution. He drowned in a bath because of neglect. The Health and Safety Executive had decided not to investigate the case. I intervened and asked it to reconsider. It then decided that it could investigate and eventually, years later, prosecutions and convictions followed. The result of the tragedy that struck that family was that Sara Ryan and an amazing group of people worked together to produce a Bill that would have strengthened the rights of individuals. We worked closely with them in the production of that Green Paper.

Because no progress was being made following the 2015 general election, the Government and NHS England embarked on a new process. In October 2015, they published a document called “Building the Right Support”. The plan was to close between 35% and 50% of in-patient beds and, critically, ensure that local areas developed the right community support by—this is the critical date—March next year. The plan involved the creation of 48 transforming care partnerships covering the whole country. These partnerships between NHS England specialist regional commissioners, local authorities and CCGs were to facilitate the shift of money from NHS England to local authorities, so that people could be cared for in the community.

There was a plan for people who had already been in in-patient care for more than five years at April 2016 to be given a dowry to facilitate their transfer into community support. When campaigners asked how many dowries had been provided, NHS England said it did not know because it did not have any records on that. What kind of implementation of a national programme is it when we do not even know, and have no way of telling, how many dowries have been delivered? And why was it just for that one cohort of people? Surely every person stuck in a hospital or institution has the right to have the money go with them on their journey back into the community. I want to know from the Government how many dowries have been delivered so far and whether they will become part of the programme in the future.

As I said, the programme ends in March next year, along with other work on learning disabilities which campaigners are concerned will continue—I will come back to that at the end—including the learning disabilities mortality review. There has already been a lot of concern expressed about how the annual report was slipped out the day after the local election at the beginning of May. The report contained pretty shocking findings, with life expectancy falling massively short of the rest of us—for men by about 22 years; for women, by 29 years—without any clear justification. Some 13% of the cohort of people looked at in the mortality review were cases where the person’s health had been adversely affected by delays in care or treatment, gaps in services or organisational dysfunction, neglect or abuse. Those findings are shocking and concerning. The question for the Government, which I will come back to, is what happens with the findings of mortality reviews. We can all express concern when they are published, but unless there is a plan of action to address the failings identified in them then nothing will change.

The nine principles in the “Building the Right Support” document are very good. They are all focused on personalised care and getting people into the community, which we all agree must happen.

[Luciana Berger]

I normally would not make so many interventions and I hope the right hon. Gentleman is happy to take them—I thank him greatly. I just want to reflect a bit more on the learning disabilities mortality review. The title is quite technical, but it comes back to what he opened his speech with: we are discussing thousands of the most vulnerable people in our country and we have a responsibility to do everything we can to compensate for the fact that they are so vulnerable. The mortality review, launched in May of the previous year, found that one in eight of the deaths reviewed showed there had been abuse, neglect, delays in treatment or gaps in care. Today we celebrate the 70th anniversary of the NHS. Is it not a sad reflection that, amidst all the positivity, we need to do something about this issue so urgently?

[Norman Lamb]

I totally agree. It is, as I said at the start, sobering. In a way, all of us who strongly support the NHS must not laud it as a perfect institution with nothing to complain about. As far as this group of people are concerned, they have been very badly let down. Fundamentally, in many cases they have died early through neglect. That is intolerable in this day and age.

The nine principles, which are positive and empowering, are really good. I sign up to them completely. It is the implementation that is lacking and has largely failed. I say to the Minister that she is very fortunate to be in her wonderful job. My great frustration is that this programme came early in my time as Minister, but I learned, as I did the job, just how critically important implementation is. You think that by establishing good principles and getting everyone to agree to implement them those organisations will do what they have committed to do. It was probably naïve to think that. The reality was that nothing changed and it still has not changed. One critically important lesson to learn from that failure is to have a total, obsessive focus on implementation and national leadership.

[Sandy Martin (Ipswich) (Lab)]

Does the right hon. Gentleman agree that to achieve transformation in care, investment needs to be put into alternatives in the community before it is possible to free vulnerable people from these institutions, and that far too often, the public sector tries to make savings before it has made the investment in the things that will achieve the same?

[Norman Lamb]

The hon. Gentleman makes a really important point, and I totally agree. I said at the start that this is not a great demand for a whole load more money. However, some up-front investment is needed, not only in establishing the facilities in the community, but in training people in the community, and I will come back to that in a little while.

[Dame Cheryl Gillan (Chesham and Amersham) (Con)]

I add my voice to others in the Chamber in saying that I am very grateful to the right hon. Gentleman for securing the debate, and I hope to catch the Chair’s eye to make a contribution on autism. Does the right hon. Gentleman agree that when it comes to financing and co-ordination, a lot can be learnt from the National Audit Office report from 2017 that looked specifically at progress in the transforming care programme? Does he also agree that it is quite worrying that the NAO said that it was concerned about the programme’s overall progress and whether it would achieve value for money? One of the problems that it pointed out was that some of the local partnerships were

“struggling to put in place appropriate accommodation quickly enough”,

which had led to delays in people coming out of hospital and perhaps not the correct co-ordination to provide the services that are so desperately required by this vulnerable group of people.

[Norman Lamb]

I thank the right hon. Lady for her intervention, although it was a bit freaky, because I was about to come on to the National Audit Office report. She is absolutely right in identifying the criticism that it made of progress on this programme.

Let me deal with the numbers involved. As I said, the commitment was to close between 35% and 50% of in-patient learning disability and autism beds and to provide alternative arrangements in the community by March next year. The document, “Building the Right Support”, mentioned getting 2,600 beds down to between 1,300 and 1,700 beds, which is a very significant drop. Hitting the minimum drop that the Government committed to of 35% would involve the closure of 922 beds. Of that total, 531 still need to be closed in what is now a very short space of time.

The latest data, from the end of May, shows that there are still 2,400 people in institutions, 41% of whom are over 50 km away from home. I ask hon. Members to think about what that means. Many of those families are not wealthy, and some people are themselves disabled. If their loved one—their child—is put in an institution a long way from home, it can sometimes be impossible to maintain contact. Just imagine—all of us—what that must mean to people to lose touch with their vulnerable child. It is not acceptable, but it persists today, and according to that latest data from the end of May, the length of stay is still over five years. There has been very little change in the length of stay. Perhaps most troubling of all from that latest data is that the number of children in in-patient beds has more than doubled. For goodness’ sake, this programme is about moving away from institutional care, yet between March 2015 and May 2018, we have doubled the number of children in institutions. This is intolerable and in a little while, I will come back to why that is not necessary if things are done properly.

I find myself in a horrible position of expressing anxiety about closing the rest of those beds by March next year, but it is important for the Minister to note that there is a real fear on the part of families and the organisations that represent them about a big risk in a head-long dash to close beds by the deadline in cases where many people have complex needs. Some people in units that have been earmarked either for closure or reductions in beds, apparently defined as “impacted sites” in the system, will not be going home but will have to be shunted somewhere else in the country. Of course, a move for someone who has very complex needs can be massively destabilising. If this is done in a hurry to meet a target because there has been a failure of the programme to date to prepare community resources, it will be a disaster for the individuals involved. For those able to live in the community who are still in institutional care, there is a massive concern that not enough has been done to develop community services or train the workforce. We have to avoid the risk of discharging people only to readmit them weeks or months later.

I mention the really shocking case of a young lad called Eden. He has been failed throughout his life, from childhood into adulthood. He has been in hospital for more than 10 years. His mother, Deb, is desperate. She constantly fights against the system, which does not listen to her. He is in a hospital in Norfolk, and they live in London. She has long journeys—a 10-hour round trip or something of that sort—to visit him. She is not wealthy. Eventually—I visited Eden in that hospital—she got him home to a facility near their home in west London, but because arrangements had not been made properly by the local authority to have the proper support services in place, within weeks he was back in that institution again. That individual has been horribly failed by the NHS—by the system—and it is wholly unacceptable.

The consequences of the failure to get people out of institutions include, as I said, the loss of contact with family. Care behind closed doors often involves unacceptable practices, hidden from view. I mentioned Fauzia earlier, who was admitted to St Andrew’s hospital in Northampton—she was a child of 15 at the time. Her family asked me to go and visit her. It is an unusual thing for a Minister to do, but I decided to go at the invitation not of the institution, but of the family. I went to see her and she was living in what I would describe as “a cell”. This is a 15-year-old girl. She suffered from the constant use of force—restraint—and she was being put into seclusion in another room that was completely bare, with concrete walls. She had a tiny exercise yard. This girl was in there for over two years. It was really shocking—a total abuse of her human rights. She had no life at all, yet from the day that she was discharged, when we finally got a review undertaken, there has been no more restraint. She went to a brilliant place called Alderwood, also in Northamptonshire. The people who work there have never had to use restraint against her, because they have been trained, crucially—the right hon. Member for Chesham and Amersham (Dame Cheryl Gillan) will know about this—in how autism affects the individual, which so often does not happen in big institutions.

I visited Fauzia at Alderwood. She has a very happy life. She is outdoors much of the time, happy and contented—still very complex, but not in the horribly alien environment that she was in in St Andrew’s. St Andrew’s is receiving a fortune in Government money—taxpayers’ money—in many cases to treat people using the wrong model of care, trapping them in this institution. It has invested in a very substantial new unit. It may be smart—I am told that it is—but why are we making this investment in new in-patient facilities when children should not be going into hospital, unless there is an absolutely exceptional circumstance?

I also visited Josh, who I mentioned earlier. He had been in a hospital in Birmingham that had cared for him well, but he was far away from home. He has now made a substantial improvement and is developing brilliantly. He has a life again, and he is happy with his family. It is inspiring to see what people are doing to support individuals in those community settings.

What have the Government done to assess the progress of this programme? The Department of Health commissioned an independent review of transforming care partnerships, allocated £1 million to it and put it out to tender, but I am told that it has now been pulled and will not go ahead. Why? I understand that it might be because NHS England is also, bizarrely, commissioning an independent review, but we have only had provisional results from that. When will we know more? Those provisional results are disturbing. They show that, in quarter 3 of 2017-18, only 35 of the 48 transforming care partnerships had intensive support services to look after adults 24/7 in their own homes across the whole area of the partnership. Those services are required by the Government’s document, and they are critical to ensuring that people can be safe at home, yet only 35 out of 48 partnerships have them in place.

Only 23—less than half—of the partnerships had intensive support services for children and young people, so it is little wonder that we have seen a doubling of the number of children going into institutions. Only 19 had adult community forensics services across the whole area, and only 14 had children and young people’s community forensics services across the area. There is no detail at all yet about what the services that are in place actually consist of. All we have is a tick-box exercise to show whether there is a service in place. As the hon. Member for Ipswich (Sandy Martin) rightly identified, there is so much missing from community support that would enable people to be safely discharged and return home.

The National Audit Office report, to which the right hon. Member for Chesham and Amersham referred, made a pretty damning assessment in 2017. It questioned the credibility of the transforming care partnership plans and highlighted the fact that care and treatment reviews were not taking place as promised. Those reviews are supposed to be carried out for every individual in in-patient care every six months, yet, as of May this year, only 54% had had one in the past six months, and 390 patients—16% of the total—had not had one for more than a year. Why not? If the programme is being properly implemented, with proper national leadership, surely those reviews should happen in every case, every six months.

The NAO made the case that money was not transferring quickly enough from hospitals to the community and that there was still no effective mechanism to guarantee that that would happen. It identified an absence of workforce plans for community provision and found that most transforming care partnerships did not intend to produce such plans until 2019. Well, how the hell are they going to meet the target of this dramatic reduction in beds by March 2019 if they do not produce workforce plans until that time? That is completely the wrong way round.

[Dame Cheryl Gillan]

I happen to agree with the right hon. Gentleman. Does he expect the Minister to be able to tell us what has happened to the extra £2 billion of investment that the Government have made in social care services since March last year? It seems to me that something is not quite right about the co-ordination in this area, because the money is going in but the outcomes are not coming out at the other end.

[Norman Lamb]

I agree, and I suspect that the social care system as a whole is under considerable strain. The Government have chosen to produce a Green Paper only on the older people element of social care. They are not looking at the position of younger adults with disability. The right hon. Lady is absolutely right to say that we are not seeing the outcomes that we absolutely need to see.

Importantly, the NAO focused on the proportion of people with learning disabilities who are in paid employment. We need to take a holistic view. This is not just about whether someone is in a hospital bed or in the community. We need to empower people, as far as possible, to live the kind of lives that the rest of us take for granted. The report highlights the fact that only 5.8% of people with a learning disability are in paid employment. However, some local authorities have up to 20% employment rates in that area, which shows what is possible. [Interruption.] Madam Deputy Speaker, I am moving towards the end of my speech. I heard a cough, and I note the point that you are trying to make.

Before I finish, however, I want to highlight the fact that there are good things going on. I want to ask the Minister a number of questions. Some areas of the country do this really well. They include Salford, Hertfordshire, Ealing and Bristol, and there is a brilliant community service in my own county of Norfolk, which is run by an immensely inspiring woman called Melanie Bruce. She previously worked in institutions, but now takes the view that very few children ever need to go into hospital and that, if they do need to do so, it should be for only a very short time. The community service is called Starfish, and I have written to Simon Stevens saying that that model should be applied everywhere. In the past year, among the group of people in the Starfish programme, there has not been a single admission to hospital. That shows what is possible, rather than the doubling of the numbers that we are seeing elsewhere. I also want to mention Shared Lives Plus, a scheme in which someone with a learning disability or with mental ill health goes to live in a family. The families are paid for the support that they give, but the scheme treats the person as a human being and an equal citizen, rather than putting them in an institution. That is what is so important.

I will end by asking the Minister some questions. What will happen after March 2019? Will she commit to an improved successor programme that learns lessons from the last seven years and actually fulfils the promise of the transforming care programme, with a focus on implementation and inspiring effective national leadership? Will she confirm that those other programmes in NHS England, which are vital for people with learning disability, will continue and that the same national focus will be maintained or indeed enhanced? What assurances can she give that this programme of work will continue as an absolute priority beyond March next year?

Given the slow progress to date on closing beds and the stated plan to close 922 beds by March, what evidence does the Minister have that new community support is available to support the safe discharge of those people? Can she guarantee that there will be a close focus on every single case, to avoid the risk of neglect? Will the Government establish a new workforce development fund to ensure that there are enough staff with the skills to deliver the right care in the community?

What actions will the Minister take to guarantee the pooling of money and the shift of resource from hospitals to the community? Will she address the conflict of interest of clinicians making decisions when they are employed by organisations that earn their money from keeping beds occupied? How will the Government ensure that all in-patients receive a care and treatment review every six months, instead of the failure of delivery that we have at the moment? What steps are the Government taking to improve data on in-patient numbers so that we can bring to an end the two unreconciled data sets that we still have, years on from when the NAO complained about this in the first place?

How will the Minister ensure that progress is robustly and independently monitored and scrutinised? When will the independent evaluation be published in full? How do the Government intend to learn from the areas of really good practice to deliver an approach based on early intervention and crisis prevention? Will she ensure that, from here on, children will be central to the Government’s programme? If we can prevent children from going into institutions in the first place, we can change their lives completely. We can rescue them from a life in an institution.

Finally, will the Minister discuss with the Prime Minister the case for a cross-departmental ministerial taskforce to drive progress and show that all parts of Government are doing their bit to meet people’s full range of needs, given the importance not only of where they are but of employment, housing, education and the criminal justice system? This is a story of the awful neglect of people’s human rights, and of people in this country here and now being treated as second-class citizens. This really does have to end, and we owe it to the families sitting in the Public Gallery today and their loved ones to do far better by them in the future.

14:39

[Dame Cheryl Gillan (Chesham and Amersham) (Con)]

Once again, I congratulate the right hon. Member for North Norfolk (Norman Lamb) on securing this debate, but I regret that more of our colleagues are not in the Chamber for what I consider to be a very important debate.

I hope that the right hon. Gentleman and the House will forgive me if I come at this purely from the angle of autism, but, having the privilege of chairing the all-party group on autism, I tend to refer to it on every occasion, as many of my colleagues know. I have just come from a lunchtime event in the other place with the Baroness Browning, Angela Browning, who entered the House in the same year as I did and who was the original inspiration behind the Autism Act 2009, a private Member’s Bill that I took through the House. She was entertaining a group of people from an organisation called Fixers. I appreciate that we are not allowed prompts in the Chamber, but its report, “Feel Happy on the Spectrum: Young Autistic People Speak Out”, has already left an impression on me. Two very impressive young people, Jenny and Gabriel, talked us through their experiences.

As the right hon. Gentleman talked about employment, I had a look at the recommendations in the report, and of course they include something we would all like to see: more education on autism in the workplace. It contains testimony that I thought would be interesting to read into the record from a young person who has obviously found an employer who is understanding and welcoming of their autism. They wrote:

“Civil Service fast-stream is really good for people with autism. They go out of their way to accommodate your autism in their entrance exams with things like extra time and they don’t discriminate if you disclose”.

That is a positive note on which to start my remarks in a debate that is partly a reflection of the very sad and disturbing stories that came out of Winterbourne View care home. The transforming care programme was developed in response to that atrocious scandal. No one could have failed to be moved by the shocking abuse of adults with learning disabilities and autism in that private hospital, which was supposed to be an assessment and treatment unit—it most certainly was not a treatment unit; it was a maltreatment unit. Following that, the Government committed to moving about 3,000 adults with learning disabilities and autism out of in-patient settings and into community-based support by next April.

Although we have seen a small reduction in the number of people in in-patient settings, about 2,500 people are still in hospital, as the right hon. Gentleman said. Some 10% of those patients are under 18—that number has more than doubled since 2015; 61% have been in hospital for over two years and some, sadly, for over 10 years; and 46% have not had a care treatment review in the past six months, as mandated. As he also told us, and as I also understand from an excellent organisation called Dimensions, which provides personalised social care services to people with learning disabilities and autism, more than 22% of people are placed more than 100 km from home. So although there has been a reduction in the number of people living in hospital and some real success in moving people into community support, too many people are still being admitted or readmitted to hospital, and there remain obstacles to moving some of the original cohort considered under the programme into real homes.

The success of the programme relies on the right support being available in the community to prevent people from being admitted in the first place or to help them move out of hospital. The number of autistic people recorded in in-patient units has increased by over a third in the three years since data collection began in March 2015. That is a phenomenal increase. According to the latest figures, almost 48% of people covered by the transforming care programme are in fact autistic. While some of this increase may be put down to better identification of autism, it still displays a concerning over-reliance on hospitals rather than homes. Put simply, if transforming care does not work for autistic people, I am afraid that it will not work. If the programme is to continue, all mental health staff will require better training on and understanding of autism and the right community support will have to be made available.

It is crucial that we hear from the Minister what plans there are beyond March 2019 to ensure that any progress made is not lost and that there is a focus on areas where better progress needs to be made, specifically in supporting autistic people.

[Jim Shannon (Strangford) (DUP)]

I am sorry I was not here earlier, but I was in a one-hour Westminster Hall debate. I commend the right hon. Lady for the hard work she does on autism across the United Kingdom. As she will know, Northern Ireland has an autism strategy that leads the United Kingdom. It is similar to the programme in Wales, but we are leading the way. Will she kindly suggest to the Minister that the Government look at the plan in Northern Ireland, along with the one in Wales, as a good way of proceeding?

[Dame Cheryl Gillan]

Yes, it is very important that we look at what arrangements the devolved countries make for people with autism. Certainly a few years ago, Wales was well in advance with its plans for autism, which I found most commendable, but I think it now needs to revisit and update its plans, because none of these plans must be left to one side; they need to be constantly reviewed and updated.

I am pleased that next year we will have the opportunity to conduct a 10-year review of the Autism Act. I hope the right hon. Gentleman will contribute to the work that many Members are doing on both sides of the House in various areas, from education to employment, healthcare and even the over-representation of people with autism in the criminal justice system, so that we can put down a marker for the Government after 10 years on what progress has been made and how much further we have to go. If the hon. Member for Strangford (Jim Shannon) would be good enough to send me a link to the plans in Northern Ireland, or point me in the right direction, I am sure they will be taken into consideration as we carry out the review.

I am pleased to see the Minister in her place, as she obviously has a lead role, but I think that all relevant Departments need to play their part. I still have a feeling that we need a cross-departmental ministerial taskforce to cover the areas that I have just been highlighting, such as health, education, housing, and justice, all of which we will include in the APPG’s summary and presentation to the Government next year. Let me put down a marker for the Government. I want to know what plans the Minister has for the future of transforming care, whether she will establish that cross-departmental taskforce to lead the process, and what steps she will take to reduce the number of admissions of autistic people and improve the community services that should support them.

I work closely with many autism charities, and in particular with the National Autistic Society. Alongside Mencap and the Challenging Behaviour Foundation, it has been leading research on the experience of families who have been affected by the transforming care programme. It wanted to look into exactly how relatives came to be in mental health hospitals, and what was getting in the way of their being discharged back into the community. I commend to the Minister the report “Transforming Care: our stories”. It contains the very powerful stories of 13 families, and I think that she will find it very useful, if she or her officials have not yet been able to read it.

The report found that, despite the existence of a national programme, five areas needed real focus to make the programme successful. The first is

“Making sure the right services are available in the community”.

I think we have covered that. The second is involving and listening to individual families, and helping them to be heard through advocacy if necessary. The third is improving the quality of in-patient care. The fourth is

“Making plans for discharge and sticking to them”.

The fifth is providing specialist support from trained and understanding staff. For me, that last one is key. When we have met someone with autism, we have met just one person with autism. Everyone is different. Staff really need to understand that, and to be trained to understand people with autism.

[Sandy Martin]

Does the right hon. Lady agree that one of the most important aspects of support for the families of children and young people with autism is the availability of respite care, to enable them to cope with the very great additional duties that they have?

[Dame Cheryl Gillan]

Absolutely. I know from my constituency casework—as, I think, will every MP—that providing a safe home and a safe environment for a family member who has autism can be a very intense, demanding and challenging process, and respite care plays an important part in giving family members a breathing space.

The report includes some remarks from someone called Anna, the mother of Catherine, who is autistic and has a learning disability and obsessive-compulsive disorder.

“Anna told us, ‘she’s not getting any treatment, it’s just a holding pen because staff [in the unit] don’t have the right skills, expertise or mindset…Everything is about seclusion, never about trying to prevent incidents happening in the first place.”

That demonstrates to me that there is a lack of training, and that much more emphasis should be put on that.

The report goes on to outline recommendations made from people and organisations at every level, from individual professionals to NHS England and the Government. In particular, it suggests that a cultural shift is needed to ensure that individuals and their families are listened to in a way that can reduce the number of adversarial relationships that sometimes arise. The importance of a good understanding of both autism and learning disabilities, as a comorbidity, should be emphasised more than it is at present.

One of the parents of an autistic man with mental health problems said:

““Stephen just falls between the gaps and no one takes ultimate responsibility for his case… Where is the pressure to get Stephen back into the community?”

That is a cry for help from a father who wants to see his son go out into the community and have the quality of life that everyone deserves to be able to achieve.

The report also highlights a lack of accountability throughout the system, particularly when it comes to meeting the needs of autistic people. At a national level, in NHS England, leadership for autism falls into the gap between established learning disability and mental health teams. The appointment of a new strategy lead for autism in NHS England is considered to be a very positive step, but I need to be reassured that, in the future, NHS England will focus on the needs of autistic people in order to meet the Government’s requirement for a reduction in their health inequality, which is a commitment in the NHS mandate. I hope that the Minister will tell us what steps she will take to ensure that NHS England allocates appropriate resources to the needs of autistic people, and to ensure that the issues set out in “Transforming Care: our stories”—I am going to give her a copy—are addressed.

Autism charities regularly hear that autistic people struggle to find mental health support that meets their needs, and in the worst cases, if this is not available, people hit crisis and are admitted to hospital. Traditional mental health interventions might need changing, for example by using clear, non-metaphorical language or communicating with someone who does not speak. That, again, requires a good understanding of autism.

In 2016 NHS England published its mental health “Five Year Forward View” outlining how it plans to improve mental health services in England. It includes a number of proposals for new care pathways to help people access the right support and, importantly, it proposes a care pathway for autism. Work on designing this pathway is due to start this year, but I have not seen any detail on what it will include. It is vital that it covers the following for children, young people and adults on the autism spectrum: timely access to autism diagnosis, autism training for all mental health staff, and the ability to make reasonable adjustments for mental health treatments so that if autistic people need mental health support, they can get the right help from services. I hope that the Minister will also address how the autism care pathway will be developed and that it will cover diagnosis, access to tailored mental health support and autism training.

Another contributory factor to the number of autistic people in mental health hospitals is the inclusion of autism in the Mental Health Act 1983 definition of mental disorder, meaning that autistic people can be sectioned without a diagnosed mental health problem. The independent review of the Mental Health Act is very important and has been welcomed by the autism charities. They believe it is important to create a legal regime around mental health support that properly meets the needs of autistic people and their families. The status quo fails to do this, and that has resulted in autistic people being inappropriately detained under the Act and far too often subjected to damaging over-medication. The NHS digital data show that autistic people are not benefiting entirely from the NHS England transforming care programme, because the in-patient numbers are failing to meaningfully reduce and in some cases are rising. The review’s interim report has identified this definition of autism as a mental disorder as a key question to be addressed in the final report, and I strongly urge that the review must address the inequality for autistic people at the heart of the Mental Health Act. I hope the Minister addresses that in her closing remarks.

I have spoken for some time, and I hope I have added to the debate initiated by the right hon. Member for North Norfolk, although I appreciate that I have, inevitably, repeated some of the points he made. In conclusion, I go back to something I said earlier about the transforming care programme that I think summarises the situation. Put simply, if transforming care does not work for autistic people, it will not work. We want transforming care to work; we want it to succeed. It has made a start: it is not an all-good start, but it is not an all-bad start. The Minister and the Government have a golden opportunity to turn what is a visionary programme into something that can reflect the success of the care with which we look after people in our community with learning disabilities and autism. I look forward to hearing the Minister’s response.

14:58

[Helen Hayes (Dulwich and West Norwood) (Lab)]

I am grateful to the Backbench Business Committee for allocating time for the debate and to the right hon. Member for North Norfolk (Norman Lamb) for securing it. I am also grateful for his commitment to this issue over many years. It is a pleasure to follow the right hon. Member for Chesham and Amersham (Dame Cheryl Gillan). I am grateful, too, for her deep commitment to, and knowledge of, the subject of autism.

The treatment of residents at Winterbourne View was a national disgrace. That any human being should be subjected to such terrifying physical and emotional abuse in their own home setting is utterly abhorrent, and that those people should be among the most vulnerable and least able to speak out or defend themselves simply defies belief. The way in which we treat our most vulnerable residents is a mark of our civilisation, and Winterbourne View was a failure of the most basic measure of human decency. It was therefore absolutely right that the public outcry that followed Winterbourne View led to a firm commitment from the Government and to the transforming care programme.

However, the transforming care programme has failed to live up to its name. It has not substantially transformed the care and support that many people with autism and/or a learning disability are receiving. There are still far too many people living in hospitals such as Winterbourne View instead of homes. There are still far too many examples of families who have to fight each week to ensure their relatives’ safety and security, and even the basics of care, and too many people are still not receiving the support they need to live healthy, secure and fulfilled lives. We are now eight months away from the end of the transforming care programme and urgent action is needed to deliver a genuine transformation in the quality of care for thousands of people living with learning disability and autism in the UK.

In December 2012, 3,400 people were in NHS-funded learning disability in-patient beds, with around 1,200 in assessment and treatment units. The original Department of Health report following Winterbourne View found that the main reason for referral was the management of a crisis, suggesting that the failure in service provision had often started long before the person was admitted to hospital. The failure often involved a lack of support in other areas of health, social care and education provision, often leading to behaviour and mental health deteriorating over time and then reaching a crisis point. The report’s conclusion suggested six key changes, and I want to restate them because, in the experience of too many of my constituents, those changes have not yet been implemented or become a reality.

The first recommendation was that the information made available by councils, health bodies and care providers should be transparent and of good quality. The second was that community-based mental health services should offer assertive outreach, 24-hour crisis resolution and general support. The third recommendation was that small-scale residential care should be available to those in greatest need. The fourth was that employment or daytime activities should be offered. The fifth was that health and social care commissioners should start to plan from day one of admission to in-patient services for the move back to the community. The final recommendation was that the Care Quality Commission should monitor whether services are meeting essential standards, take enforcement action if a provider is not compliant, and monitor the operation of the Mental Health Act 1983.

Those recommendations bring me to the case of my constituent Matthew Garnett. Matthew’s mother Isabelle is in the Public Gallery today, and I am grateful to the Minister for taking the time to meet me and Isabelle recently. I have spoken of Matthew’s situation in the Chamber several times, but I make no apologies for raising it again today because his case illustrates exactly how little progress has been made in implementing the Department of Health’s original recommendations in response to Winterbourne View.

Matthew is approaching his 18th birthday. He is a tall young man whose absolute passion is football, particularly Liverpool FC. Matthew has autism. I first met Matthew’s mum at the start of 2016 when she came to my surgery following a deterioration in Matthew’s mental health and behaviour at home. Matthew had been admitted to a mental health unit under section. At that time, Matthew’s parents were concerned that the assessment unit that he was in had no specialism in autism and that he had been there for far too long without appropriate clinical support. They had been recommended a hospital in Northampton, St Andrew’s, as a place with the right expertise for Matthew to be able to get well and come home. I supported their battle to get access to a bed for Matthew at St Andrew’s, and we celebrated when he was allocated a bed.

After Matthew had been at St Andrew’s for just a few weeks, his parents came to see me again. They were concerned that Matthew seemed to be taking part in very few activities, that he was losing weight, that he had become more withdrawn and that they had noticed signs of anxiety in his behaviour. They were concerned that there was no discharge plan and that staff seemed reluctant even to talk about one. Matthew’s situation deteriorated rapidly at St Andrew’s. He suffered a broken wrist and bruising. His parents found excrement in his shoes. He lost a catastrophic amount of weight. His parents became gravely concerned that he would die, so we fought again. They found alternative community-based provision not far from the hospital. They contacted Alderwood, which the right hon. Member for North Norfolk has already mentioned, and discovered that it had a place for Matthew, so he moved in.

Matthew is now flourishing. He volunteers at the local football club and in the village where his home is located. He takes part in a wide range of activities—from film nights to canoeing and trips to the seaside—and he is able to play and watch lots of football. Matthew is well and living life to the full. The care and support he is receiving costs considerably less than the £12,000 a week spent by the NHS on a private hospital bed in which his health was deteriorating and from which there was no plan to discharge him.

[Norman Lamb]

The hon. Lady is making a powerful case. Does she agree that the Care Quality Commission should do far more to challenge how these units often define themselves as specialist units? The care given to Matthew and Fouzia at St Andrew’s in Northampton was very far from specialist; it was inappropriate and it damaged them massively.

[Helen Hayes]

I thank the right hon. Gentleman for his intervention. I also visited St Andrew’s and, when I returned, I looked at how it was advertising its services and compared that with what I saw. I would go so far as to say that, in any consumer environment, a good case could be made that St Andrew’s was contravening the Trade Descriptions Act 1968 in how it was advertising itself, given the expertise the staff actually had in relation to autism. In my view, that is certainly a matter for the CQC.

Matthew’s case is important, because it demonstrates clearly that all the failures that led to Winterbourne View are still possible. Matthew’s family did not receive the support they needed for Matthew at any stage prior to his admission to hospital. It was that lack of support that led to his behaviour deteriorating in the first place. There was no assertive outreach or 24-hour crisis resolution support; there was just the local police force when things got too much. That was four years after the Department of Health report on Winterbourne View.

The small-scale residential setting in which Matthew is now living is brilliant, but there is far too little of that type of provision and none of it close to home. Matthew’s parents live in my south London constituency, and Matthew is currently living in Northamptonshire. I met the providers of his care at Alderwood, and they told me that what they provide is easily scalable. It is about training staff in effective communication techniques, paying staff properly and providing a good career structure so that providers can retain a stable team, and being able to access funding for the places they provide. It is not rocket science. It just needs a proper commitment to invest in settings that deliver the best possible care.

At St Andrew’s, Matthew was not participating in any meaningful activities on a day-to-day basis; the emphasis was on managing and containing his behaviour through medication rather than engaging him in recovery. In his new home at Alderwood, Matthew is on very low levels of medication. He takes part in meaningful activities that add value to his life and make a real contribution to his community on a daily basis.

There was no discharge planning while Matthew was at St Andrew’s. In fact, his parents were told they were being far too optimistic even to raise discharge with his clinicians. St Andrew’s is a private hospital that is largely funded by the NHS. The Government must look seriously and urgently at the perverse incentives at work in a system that is so reliant on the private sector because of the lack of NHS provision. Private hospitals currently have no incentive to discharge when they are being paid a rate of £12,000 a week by the NHS.

There was very little scrutiny of the effectiveness of the treatment Matthew was receiving in return for such large amounts of NHS funding, and no regard was given to the concerns of his family, who had to fight to get a second opinion, which was itself dismissed by staff at St Andrew’s.

Transforming care can never be fully implemented while such perverse incentives apply and while profit-making organisations are relied on to substitute for a lack of proper funding for NHS and social care provision. Private hospitals too often remain holding pens for patients, rather than the secure and supported homes that they need. No learning disabled or autistic person should be living in a hospital for the long term. We need homes not hospitals.

Too many of my constituents whose family members, including children, have a learning disability and/or autism still tell me that when they express concerns about the care their loved one is receiving, their views are not taken seriously and they have to battle to have their concerns addressed. Again, we cannot begin to see a system that delivers the care that vulnerable people need without proper processes for accountability through which family members can raise concerns.

I am concerned about the Government’s tracking of the progress of the implementation of transforming care. In response to a written question tabled by my hon. Friend the Member for Worsley and Eccles South (Barbara Keeley), the Minister for Care highlighted, in her answer on 4 June, the plan to decommission 900 beds in mental health hospitals. Assuring transformation data provides figures on the number of people with learning disabilities and/or autism admitted and discharged. In the 2017-18 period, there were 330 more discharges than admissions, but it should be noted that that applies not to individual people, but to the individual instance of an admission or discharge, so there is no way to tell to what extent some people are caught in a revolving door. The dataset does not directly identify whether an admission is from the community or a transfer from another hospital setting. Similarly, the data does not directly identify whether the end of an episode of care is a discharge to the community or a transfer to another hospital setting. Thus, although 330 discharges might sound like progress, the Department of Health and Social Care has not so far provided figures for individual cases. In the light of the target of closing 900 beds, this cannot be seen in any way as a victory for either the Government or, more importantly, those vulnerable individuals whom transforming care is intended to safeguard.

I am also concerned that the Government's focus for the final few months of transforming care is far too much on hospital bed closures. Bed closures should be a consequence of the provision of properly funded, high-quality community settings, and the by-product of achieving better outcomes for people currently in long-term hospital provision. Instead, the Government continually refer to bed closures as the headline target and measure for transforming care. Without high-quality, properly resourced alternative provision, bed closures, in themselves, will simply result in further pressures on the NHS, as people who are discharged without sufficient support will end up readmitted, via A&E, to a situation where fewer in-patient beds are available. It is almost impossible to find any meaningful data on the funding and level of community provision for people with autism and learning disabilities, and I urge the Government to switch their focus from bed closures to community provision for the final eight months of transforming care in its current form.

I also want to highlight the regulatory gap that still exists. A constituent contacted me recently on behalf of her brother, who is an adult with autism living in a supported housing provision, paid for through his personal budget. He needs a high level of support and his personal budget is considerable, but his sister has raised concerns about his treatment in the community provision over a period of months. The provision involves a high level of care, but is technically supported housing, which means that it is not regulated by the CQC. The recent report by the Housing, Communities and Local Government Committee and the Work and Pensions Committee on supported housing highlighted this gap in regulation and called on the Government to take action to address it, and I want to do so again today. There is great urgency that we make progress on transforming care, but discharging vulnerable people from hospital into settings that are not regulated creates a risk that they will be failed yet again.

Finally, I wish to highlight the wider gap in awareness and support, particularly in the area of autism. In schools and in the NHS, the experience of far too many of my constituents is that the support needed so that autistic people, particularly children, are able to thrive is simply not there. This continued failure to properly equip teachers and healthcare professionals to understand autism and the support that their students and patients need has long-term consequences through an increased level of care that people need later in life and an increased likelihood of crisis. I urge the Minister to work with her colleagues, particularly those in the Department for Education, to accelerate and bring forward training in autism for teachers, and not just new teachers coming through the education system now but existing teachers who are working day in, day out, without the knowledge that they need to serve autistic students well.

There is no way around the fact that the transforming care programme has failed significantly to date. We need a renewed focus on care and support for people with learning disabilities and autism. In every community throughout the country they should be living well, close to family and friends and properly supported, not locked away receiving over-medicalised care, with no one monitoring how effective that care is or what the public purse receives by way of high-quality provision in return for the expenditure. We need homes not hospitals, and we need everybody living with autism and a learning disability in this country to be able to live life to the full, with dignity, in community settings that are close to home.

[Madam Deputy Speaker (Dame Eleanor Laing)]

I call Ronnie Cowan.

15:15

[Ronnie Cowan (Inverclyde) (SNP)]

Thank you very much, Madam Deputy Speaker; it was like Hobson’s choice there, but I eventually got to my feet.

I thank the right hon. Member for North Norfolk (Norman Lamb) for securing this important debate. I echo the sentiments of the right hon. Member for Chesham and Amersham (Dame Cheryl Gillan) about there being lamentably few Members present to take part; it makes my job of summarising the debate a lot easier, but I am sure that all 650 MPs have constituency cases relating to the issues we are discussing.

The right hon. Member for North Norfolk correctly pointed out in his opening remarks that the input from charitable organisations in the sector is absolutely paramount. Where would we be without the organisations that turn out in numbers to raise money for and give help and support to people in care throughout our society? Their commitment and support of the caring community is quite extraordinary. He also brought a humane touch to the debate, detailing some distressing individual cases, and highlighted the risk that individuals can be trapped in the very system that is supposed to be there to aid them.

The right hon. Gentleman also encouraged whistle- blowers, saying that they should be listened to and not shut down. He offered strong support for the nine principles on getting the right support, describing them as positive and empowering, but unfortunately had to lament the fact that they have not actually been implemented yet. He spoke passionately about keeping children out of institutions and hospitals wherever possible and caring for them in our communities.

Once again, the right hon. Member for Chesham and Amersham educated the House on matters regarding autism, and she has no need to apologise for that. Several organisations in Inverclyde, my constituency, support children and young adults across the spectrum, and at least two of them were started because parents could not find the help and support for their loved ones that they were looking for. They got up and did it themselves. The right hon. Lady expressed concern that there is still an overriding reliance on hospital care and spoke about the need for a cross-departmental taskforce, because the issues cover a range of Departments. She also highlighted how inappropriate it is to detain people with autism under the Mental Health Act 1983.

The hon. Member for Dulwich and West Norwood (Helen Hayes) was highly critical of the transforming care programme and expressed concerns that many people with learning disabilities and autism are not properly supported. She forensically analysed the case of Matthew Garnett, thereby identifying the failings in the system. That was a timely reminder that behind the statistics are individuals and their families. Thankfully, Matthew is now flourishing at Alderwood, and it is notable that the care there costs less than institutional care.

I have absolutely no desire whatsoever to turn this speech into a party political broadcast but, as the hon. Member for Strangford (Jim Shannon) said, there are examples out there from throughout the United Kingdom that can be learned from, and I hope that the UK Government will look to improve the care that they provide.

I am proud to be a member of the Scottish National party. In our 2016 manifesto, we made the following pledge:

“Our services will be designed to support people living longer, often with complex conditions. Our aim is to deliver care as close to home as possible. We will build on health and social care integration by ensuring that our NHS develops as a Community Health Service.”

The Scottish Government are continuing to work on and review our strategy, and that is key: we have to work on and review our strategies; we cannot sit back on our laurels at any point and decide that we have this matter under control. It is about learning and re-learning as we go forward.

The Keys to Life, published in 2013, is a 10-year strategy, with a focus on health issues, to improve the quality of life for people with learning disabilities. With £7.7 million of investment, we are improving learning disability services in Scotland. The strategy’s implementation plan sets out four strategic outcomes: a healthy life; choice and control; independence; and active citizenship. The delivery of the strategy is being taken forward with a wide range of partners in the statutory and third sectors, and is focused on phased priorities targeted at each of the four outcomes. The Scottish Government have been working since 2017 on reviewing progress and identifying priorities for the next phase of implementation. Reducing the stark health inequalities that people with learning disabilities face is a key priority within the strategy. Without good health, people with learning disabilities are unable to contribute to, or participate in, their communities.

Ultimately, sometimes these things do come down to money. There will never be a time when we look at the healthcare that we are provided with and say, “Well, that’s good enough.” We always want better for our friends, our family and our loved ones. The Scottish Government are committed to the twin approach of investment and reform in our national health and care services. In 2018-19, the health resource budget will increase by more than £400 million to £13.1 billion— £360 million more than the inflation-only increases since 2016-17. By the end of the current Holyrood term, we will have increased the health resource budget by £2 billion.

I have grave concern with regard to the people providing these services. Although we all seek to improve care across our communities, Brexit and the UK Government’s hesitation in guaranteeing EU national rights for those in the UK means that we face a massive threat to the NHS workforce. As a result, we face losing valued and respected workers in the care sector and beyond. The free movement of people and the mutual recognition of qualifications allow skilled and experienced health professionals from the EU and the European economic area to work in our NHS. Without that, our ability to continue to provide high-quality health and social care services for the people of Scotland will suffer, particularly for the people in Scotland’s remote and rural communities, and that will be echoed throughout the United Kingdom.

I always take great pleasure in engaging in the local carers’ week in my community. It has happened in the past three years that I have been an MP. It is a learning process. Attending such events means that we can meet some of the best people in our communities. I learn from them on an ongoing basis, and I look forward to doing so. I ask this Government to take a serious long-term look at how to fund the service, where to get the people from and how to roll out the correct and appropriate training to help some of the most vulnerable people in our society.

15:21

[Paula Sherriff (Dewsbury) (Lab)]

Let me start by congratulating and thanking the right hon. Member for North Norfolk (Norman Lamb) for securing this debate and the Backbench Business Committee for granting the time on this very important issue. As the motion today notes, the transforming care programme was created with the stated intention of improving quality of care and quality of life for children and adults with a learning disability or autism who display challenging behaviours.

As we have heard from Members today, people with learning disabilities too often suffer from neglect, abuse, poor care and even premature death. Unfortunately, as the right hon. Gentleman set out, the transforming care programme simply is not delivering the promised improvements in their lives. Instead, too many are wrongly admitted to assessment and treatment units, in which they remain trapped, rather than living independently where they can be with their families and friends and, of course, the support network that comes with them. The community services that should be part of that support network are themselves underfunded and simply do not have the capacity that is needed. As it stands, the transforming care programme is unlikely even to come close to the ambitions rightly set out in the “Building the Right Support” strategy by March 2019, when it is due to conclude. Let us take, for example, the target to decommission 900 learning disability beds in conventional hospitals. The Minister admitted just this week, in an answer to my hon. Friend the Member for Worsley and Eccles South (Barbara Keeley), that the Government have not even come close to meeting the halfway point to that target.

Seven years after Winterbourne View and more than two years on from the start of “Building the Right Support” strategy, there has been a startling lack of progress in key areas. There has been little reduction in the number of people in in-patient units and in the number of admissions. Indeed, the most recent data, from May 2018, shows that there are 2,400 people with a learning disability and/or autism in in-patient units, which is an increase since the last monthly data was released. It should be of great concern that the number of children in in-patient units has also increased. The latest NHS Digital data shows there are 250 children in these units, more than double the number of children—110—who were reported as being in in-patient units in March 2015. There are 465 young people aged between 18 and 24 in in-patient units, and this age group makes up a significant proportion of the whole transforming care in-patient cohort. This data suggests that the transition from child to adult services is the point at which people with learning disabilities are particularly at risk of admission, as Dame Christine Lenehan pointed out in her review last year.

As we have already heard this afternoon, the average length of stay in in-patient units has stayed largely the same, at approximately 5.4 years. Similarly, in answers to my hon. Friends Ministers have admitted that discharges into the community actually went down in the last year, and quite significantly so for those with learning disabilities. It is clear that transforming care is not delivering the promised outcomes at this time. Unfortunately, this failure fits the wider picture of neglect for people with learning disabilities and the services on which they rely.

The recent learning disabilities mortality review came seven years after Winterbourne View and nearly three years since the death of Connor Sparrowhawk, which in part prompted it. Its findings show the scant regard with which people with learning disabilities are treated.

[Mark Tami (Alyn and Deeside) (Lab)]

The fact that the risk of people with learning disabilities dying before the age of 50 is 58 times higher than the rest of the population is scandalous in itself.

[Paula Sherriff]

My hon. Friend makes a very valid point. Everybody here this afternoon could not fail to be shocked and horrified by the case outlined by my hon. Friend the Member for Dulwich and West Norwood (Helen Hayes) regarding her young constituent, Matthew, and the quality of care that he received on an in-patient unit.

Some 1,311 cases were passed for review between July 2016 and November 2017, but only 103—that is 8%—have finished so far. The report cited a lack of local capacity to review cases, inadequate training for people completing mortality reviews and insufficient staff capacity to complete a mortality review. Will the Minister update the House on when the remaining cases will be finalised and what the Department is doing to ensure that these barriers are tackled? In 13% of cases reviewed, the person’s health had been adversely affected by delays in care or treatment, gaps in service provision, organisational dysfunction, neglect or abuse.

Just how many more deaths must occur before the Government tackle the unjust treatment of people with learning disabilities? Dr Ryan, Connor Sparrowhawk’s mother, was also damning in her assessment. She said that too many agencies had shown “systematic disregard” for some people with learning disabilities and she felt that certain people “simply don’t count” in the eyes of the authorities. We must do better, and we must show that every single life matters. But our fear is that, without some fundamental changes in the Government’s approach, the problem is set to get worse, not better.

Take the NHS workforce, for example. The latest figures from Health Education England show that the number of learning disability nurses working in the NHS has gone down by a third over five years. HEE data from March 2017 shows that learning disability nursing had the highest proportion of vacancies, at 16.3%, compared with all other fields of nursing. Will the Minister tell us how the Government plan to tackle this?

It is bad enough that the failures of transforming care have left too many people inappropriately in hospital settings, but the lack of trained staff when they are there makes that failure all the more stark.

[Dame Cheryl Gillan]

I am with the hon. Lady in her criticisms, and in wanting some constructive developments and improvements, but I would not want her to stay at the Dispatch Box and paint a picture that is completely negative. There are some inspirational stories about people coming out of these settings and institutions after being dealt with by a caring team, who have put a particular emphasis on communications and turned lives around. Some of the case studies published by Dimensions show that that really is one of the ways forward, and that is what we should seek. It is possible to take an aggressive individual out of an in-patient setting and give them the quality of life and meaning to life that we would all want and expect.

[Paula Sherriff]

I thank the right hon. Lady for her intervention. I absolutely agree. There are some incredible examples around the country of excellent work that is being done, but that makes it all the more important that we share that good practice so that it is disseminated more widely. Particularly on this very special day of the NHS’s 70th anniversary, I pay tribute to all those people who are involved in being innovative, and not just doing exactly what they have to and no more.

It is bad enough that the failure of transforming care has left too many people inappropriately in hospital settings, but the lack of trained staff when they are there makes that failure all the more stark. It is also a matter of great concern that the Government are not including people with learning disabilities, or working-age people with disabilities, in the social care Green Paper, but are instead having a “parallel workstream”. Once again, the care needs of people with learning disabilities seem to have been put in second place.

If this catalogue of failure were not enough, the issue around sleep-ins threatens to make it even worse. It has been woefully mishandled thus far. Having admitted that earlier guidance on pay was misleading both for providers and commissioners, Ministers are now playing for time rather than finding a solution, ignoring warnings from care providers, charities, and the Local Government Association. The consequences for people with learning disabilities and autism could be disastrous. Some 70% of learning disability providers have warned that they will no longer be viable. It could drastically reduce the number of providers available to provide community services. For people with learning disabilities, autism or challenging behaviour who are personal budget-holders in receipt of funding from local authorities to pay care staff themselves, this crisis could lead to difficulty in paying their personal back-pay bill and, in turn, having to reduce their level of support to cover costs.

Let me be clear, as a former healthcare worker and trade unionist, that the care workers affected should receive historic back pay for national minimum wage sleep-in shifts rather than paying the price for underfunding of social care. Given the state of the sector, without imminent investment we run the risk of a systemic failure that could leave thousands of people without the care that they desperately need. That is why we continue to call for the Government to reveal the full scale of financial liability and to increase funding for social care so that care providers can continue to deliver services to vulnerable people in need of care and workers can receive the pay to which they are entitled.

A Labour Government would provide care workers with paid travel time, access to training, and an option to choose regular hours. That, of course, comes in the context of proper investment, increasing social care budgets by £8 billion over the next Parliament, including an additional £1 billion for the first year to ease the Tory social care crisis. We have made our alternative crystal clear. Our policy will include all people with care needs, with the aim of ensuring that they can live independently and, most crucially, with dignity.

The question that the Minister must now answer is whether and how this Government can work towards that goal. Will there be a successor programme to transforming care? How will the shift to early intervention, prevention and community care be prioritised and properly resourced, given that what we have now is clearly not sufficient? In the end, this is a question of how we value human lives.

15:29

[The Minister for Care (Caroline Dinenage)]

I congratulate the right hon. Member for North Norfolk (Norman Lamb) on securing this really important debate. I thank him for his continuing hard work and commitment, both within this place and outside, in championing the interests of people with a learning disability. As a Minister in the coalition, he was a driving force on this issue, particularly following the Winterbourne View scandal.

On a personal note, I also thank the right hon. Gentleman for the work that he did in commissioning an investigation into the tragedies at Gosport War Memorial Hospital. As a Health Minister, I have had to recuse myself from speaking about that because I am also the local Member of Parliament, but I want to put on record my gratitude to him for the work that he did. In many ways, there are parallels with what we are talking about today: families whose voices have not been heard; families who do not necessarily feel that they have been listened to. We all have to look at how we can learn the lessons from cases like Winterbourne View and how we stop other families suffering in the same way.

I thank other Members from across the House for participating in the debate. I am so sorry that there are not more of them, because this is a really important issue. I have met many of the Members here today to discuss their concerns. I will always be available to do that at another point if they would wish me to do so. They have asked me lots of questions. I will do my best to answer as many of them as I can in the time that you have permitted me, Madam Deputy Speaker. If I fail to do that, I will write to the Members concerned.

[Madam Deputy Speaker (Dame Eleanor Laing)]

For the sake of clarity, I should say to the Minister that I cannot limit her time, nor would I try to. In the current circumstances, she actually has an enormous amount of time, but I know that she will not try the patience of the House. I agree with her that a great many important questions have been raised, and I am sure she will wish, assiduously as ever, to answer them all. I will not interfere with the time that it takes her to do so.

[Caroline Dinenage]

That truly is good news, Madam Deputy Speaker. I will try not to go on, as my husband tells me I have a propensity to do. I will answer as many questions as I can. I may have misinterpreted some of them, and I may not be able to read the copious notes I have written, but I will write to Members if I do not get to their points.

We can all agree that people with a learning disability and/or autism have the right to the same opportunities as everyone else to live satisfying and valued lives and to be treated with dignity and respect; that goes for their families, too. As good and as necessary as in-patient care can be—we have heard examples of how it has changed people’s lives—we know that people with a learning disability should have the opportunity to live at home, to develop and maintain relationships and to get the support they need to live healthy, safe and rewarding lives in their own local communities.

The mandate to NHS England—the list of “must dos” for the NHS—set by the Government every year includes the following clear objective:

“We expect NHS England to strive to reduce the health gap between people with mental health problems, learning disabilities and autism and the population as a whole, and support them to live full, healthy and independent lives.”

The transforming care programme is at the heart of that commitment. It is a partnership across local government and the NHS to transform the care, support and treatment available to enable people with a learning disability, autism or both to lead the lives of their choosing with and in their local community.

Through the national transformation plan, “Building the Right Support”, we have an ambitious and comprehensive plan to bring councils and clinical commissioning groups together in transforming care partnerships to plan and provide services across their areas; to use funding in new ways, including through pooling budgets, which I will talk about in a moment; and to ensure that people and their families have a clear idea of what they should expect from those agencies through the national service model. Key to all that has been building the right support in the community so that people do not need to go to hospital in the first place and those who are already there can move out.

Members have raised concerns today about the progress made under the transforming care programme. I can reassure them that progress continues to be made, but I will commit to take forward most seriously all the concerns raised today. The number of in-patients continues to decrease, and it is down to 2,400. NHS England has been clear that it is fully committed to meeting the ambition to reduce the number of in-patients by at least 35% by next March. It has talked about the intention to close around 900 learning disability beds. I entirely take the point made by the hon. Member for Dulwich and West Norwood (Helen Hayes) that focusing on the number of beds misses the point, and that it must be about ensuring that community provision and support are available to enable people to make that move, rather than the fact that beds are closing.

[Norman Lamb]

I appreciate the Minister being willing to write to us after the debate with anything she is not able to cover. Does she understand the concern that a headlong rush to meet the target because we are getting close to the deadline without proper arrangements in place could be disastrous for individuals? If the target is not achieved, that is better than a complete failure, with readmissions after failed discharges. The focus on detail in every case is critical.

[Caroline Dinenage]

I completely agree with the right hon. Gentleman. I do not want to have concerns about safe discharge, and that is why we look at that in care and treatment reviews. More than 7,000 of those reviews have been carried out, to reduce the time that people stay in hospital and improve the quality of care they receive while in hospital. Essentially, they are a step towards ensuring that community provision is available before people are allowed to leave hospital. The latest data show that the proportion of in-patients reported as never having had a care and treatment review was 8%, down from 47% in January 2016.

[Norman Lamb]

It should be 0%.

[Caroline Dinenage]

Absolutely, it should be 0%. As the right hon. Gentleman knows, that is what we are working towards.

[Dame Cheryl Gillan]

I appreciate that this is quite a complex area, but I have looked at some of the transition times. Dimensions—I mentioned it earlier—has estimated that its average transition time per patient is 12.5 months, which I believe is below the usual transition time. Does the Minister feel that this length of time will inhibit her from reaching her targets in 2019? Is there anything we can do to reduce the time, or does that length of time need to be taken?

[Caroline Dinenage]

My right hon. Friend makes an excellent point. NHS England says it is confident of hitting these targets and it will be doing all it can to ensure that that happens, but that must not be at the cost of treating people with the right levels of care or of having the right provision in place. This is also about keeping people out of the hospital setting in the first place.

The number of people receiving community or pre-admission care, education and treatment reviews also continues to improve, with 42% more undertaken in 2017-18 than in the previous year, of which 79% led to a decision not to admit somebody to in-patient care.

[Dame Cheryl Gillan]

I do not know whether the Minister will accept this, but I would have thought that everybody involved in this debate actually preferred us not to aim for a target that might not be reachable, because it is the quality of the outcomes and successful transitions that we are looking for. Will she be flexible enough to say, on looking at this again, that if we cannot achieve the targets by 2019, she will allow the timeframe to drop out of the picture? It is more important to have a successful transition, with the right length of time for somebody to transition, than to hit what might be an unattainable target.

[Caroline Dinenage]

I agree with my right hon. Friend that there is absolutely no point in having arbitrary targets that do not actually deliver the quality we are aiming for. As we all know from political history, targets for the sake of it have not always necessarily worked out in the way intended.

It is worth emphasising that this is a really special programme for people with very complex needs who require a very particular type of support. They also need to have their care reviewed and to have a bespoke package put in place, tailored to their needs, to allow them to live in the community. There is no one single intervention and no template for what care is needed because every person is different.

[Norman Lamb]

Will the Minister give way?

[Caroline Dinenage]

If I may make a little progress, I will definitely answer the right hon. Gentleman’s questions a bit later.

Care must be personalised, and it must be enduring. This can never be a case of rolling out a particular model of care across the country or seen as kicking off some kind of universal service.

To further accelerate discharge and the community service necessary to provide it, NHS England has transferred £50 million to clinical commissioning groups that are closing hospital beds so that they can invest in community alternatives. In addition, between 2015 and the end of the programme, NHS England will have invested over £50 million in transformation funding to support transforming care partnerships in putting in place the critical components of community support. This support includes community forensic teams, crisis prevention teams and teams focused on supporting children in the community.

Additionally, the Department of Health and Social Care has provided capital grants of over £23 million, which has been spent on housing to support people to return to live in the community or to prevent an admission to hospital. NHS England has a pipeline of further investments that it plans to deliver over the next year to support housing projects, to accelerate bed decommissioning and discharges and, most specifically and importantly, to develop community teams.

Members have expressed concern that once the transforming care programme ends in March 2019, action to support those with a learning disability and the most complex needs will also end, but I stress emphatically that that is not the case. NHS organisations and local authorities have come together to build on existing practice, and they have engaged with families and organisations to develop innovative plans to suit their areas. That must not stop. We are closing those beds permanently, and ensuring good-quality community provision is more important than ever. We should be crystal clear that the principles of building the right support will endure beyond March 2019. The philosophy is to change the way that we support people with learning disabilities for good.

[Norman Lamb]

rose—

[Caroline Dinenage]

Perhaps I can make a bit of progress and then I will come back to the right hon. Gentleman. We are not moving people from a hospital, where their outcomes are poor, into the community, just for them to be replaced in hospital by others. The transformation must be permanent, and we must consider what central support local areas need to ensure that that happens.

Hon. Members have been tempting me to talk about what will happen beyond March 2019, and to give a commitment on how the future of transforming care will look beyond that point. All delivery partners share a commitment to support the progress made by local partnerships to transform the choices available for local people, and to ensure that they are supported to lead fuller and more independent lives in their local communities. Plans are currently under way, and we will provide hon. Members with further updates once they have been finalised.

Transforming care is not the only area in which we seek to support those with a learning disability, and we are driving work to improve health and care outcomes across the board. It is an uncomfortable truth that mortality rates for people with a learning disability can be a measure of how well their care needs are being met. Following the publication of the report “Confidential Inquiry into premature deaths of people with learning disabilities” in 2013, we know that those with a learning disability die much earlier than those without, and too often for completely avoidable reasons. That is unforgivable.

In order to tackle that issue, in 2015 we established the learning disabilities mortality review programme, which requires consistent, local scrutiny across England into the deaths of anyone with a learning disability, so that action can be taken based on those findings. Like me, hon. Members will have been deeply concerned by the recent report from the University of Bristol, which leads that programme. The report highlights the persistence of inequalities faced by people with learning disabilities in their health and care. People with learning disabilities are still dying prematurely, and I was particularly alarmed and distressed to note that neglect, abuse, delays in treatment, and gaps in service provision played a part in one in eight of the deaths reviewed, which is unacceptable. The situation described in the report must change, and the Government will soon respond to its national recommendations in full. I am pleased, however, that we are not waiting for that publication to ensure that action is taken, and significant remedial actions are already under way.

I agree with the right hon. Gentleman that as well as implementation we must embed change and ensure that we never revert back—that is key and something I am determined to focus on. We need a relentless focus on improvement, and I am convinced that training is a key part of that. Local commissioners must use that learning and take appropriate remedial action in their own areas.

The NHS improvement learning disability standards published in June specify that an NHS trust should measure the service it provides against clearly defined standards, so as to identify improvements. We will collect information on every trust centrally, to monitor how well the needs of people with learning disabilities are being met.

Hon. Members mentioned workforce and training, and on 9 May we announced a £10 million fund for incentives for postgraduate students to go on to work in the fields of mental health and learning disabilities, as well as for those who go on to work in community nursing roles. We are considering the most effective way to implement an incentive scheme. Our response to the LeDeR report will address its clear recommendations on workforce training.

The right hon. Gentleman spoke about how we improve data. Clearly, with monthly data published on progress we are aiming for transparency. NHS Digital is working with the transforming care partnerships to make sure that we have high-quality data. The aim is for the mental health services dataset to be the main dataset in the future.

I was pleased that Members spoke with positivity about some of the outcomes for their constituents, albeit in some cases way too late. I am very grateful to my right hon. Friend the Member for Chesham and Amersham (Dame Cheryl Gillan) for talking about some of the transformational results of the work so far. We clearly need to see more of it. The right hon. Member for North Norfolk talked about what an incredible difference the Shared Lives scheme can make. My self-appointed best friend, an adult from my constituency with learning disabilities who sadly passed away last year, lived in a Shared Lives home. I saw what an incredible relationship she had with the family she lived with.

[Norman Lamb]

I am very grateful to the Minister for giving way. On that specific point, she will probably be aware that the development of Shared Lives is quite variable around the country. There are some regions where it has developed quite well and other regions where there is virtually nothing. The Government could give more resource to expand the programme, because that is the way that we really change lives, getting people out of institutions and giving them a fulfilling life.

[Caroline Dinenage]

I am very glad the right hon. Gentleman said that because as part of the Department of Health and Social Care legacy scheme we are providing £70,000 in this year for that sort of intermediate and reablement provision which Share Lives would come under. We should definitely be investing more in that.

I take very seriously the right hon. Gentleman’s point on conflicts of interest. We have to look at that very carefully, because it might imply that any clinician would be conflicted in making a clinical decision because they are employed by a trust. Providers are monitored by the CQC and doctors are of course subject to extremely rigorous professional registration, but I take what he says very seriously and I will look more closely at his concerns. I am very happy to meet him to discuss this issue further if he would like me to do so.

The right hon. Gentleman spoke about pooling resources. There are now formal mechanisms for that to take place, such as section 75 and the ways in which CCGs and local authorities can work together. That is the point of having transforming care partnerships’ commissioners working together.

The right hon. Gentleman spoke about the exclusion of families from decisions. That really upsets me and it really should not happen. There are legal duties, under the Mental Capacity Act 2005 and the Mental Health Act 2007, to have independent mental health advocates. I would be very keen to speak to him further about what more we can do to make sure that the legislation is having the desired effect.

My right hon. Friend the Member for Chesham and Amersham knows I am a massive fan of hers. She has probably done more to further the cause of individuals with autism and their families than anybody else in the history of this building. She spoke with great knowledge about autism and was absolutely right to point out that transforming care is not only about learning disabilities but people with autism. In Think Autism, the adult autism strategy, we set a programme of action across Government to support autistic people to lead fulfilling and independent lives where possible. We have recently refreshed the governance arrangements that will achieve greater traction and delivery of the required outcomes, better supporting autistic people to live healthy independent lives and participate in their local communities.

My right hon. Friend spoke about autism care pathways. NHS England is developing a framework of adult community mental health services which will include care for adults with comorbid neurodevelopmental disorders and/or learning disabilities, rather than the pathways planned and set out in the “Five Year Forward View” implementation plan. NHS England’s care pathway programme has evolved to take account of the current operational context and expert service user advice. The pathway is linear about discrete episodes of care, so is more appropriate for specific interventions undertaken by specialist teams.

My right hon. Friend spoke about the barriers that autistic people face in accessing mental health services. Trusts should already be ensuring that services are accessible to people with autism and that they have made reasonable adjustments to care pathways to ensure that people with learning disabilities and autism can access the highly personalised care and achieve the equality of outcome that we all want.

The hon. Member for Dulwich and West Norwood spoke about her constituent, Matthew Garnett. It was a great pleasure to meet the hon. Lady and Matthew’s mum, Isabelle, recently. I was very shocked to hear of Matthew’s experience and deeply upset to see the pictures of him at his lowest ebb, when he was suffering from the neglect that she spoke of. It was very distressing. I am pleased that the NHS is learning from this. The Marsh review into Matthew’s care has helped to shape a much more focused approach to the needs of children and young people who are at risk of slipping into the sort of crisis that she mentioned. The operational delivery group allows stakeholders, including young people, to shape policy.

[Helen Hayes]

The right hon. Member for North Norfolk (Norman Lamb) raised the issue of St Andrew’s in Northampton having been able to expand so significantly with the benefit of NHS funding—I cannot remember the exact percentage, but the percentage of funding that comes from the NHS for St Andrew’s is up in the eighties and nineties. Does she agree that this is not the right model and will she commit to looking at limiting the further expansion of private in-patient beds, when they are not what is needed for treating young people with autism and learning disability?

[Caroline Dinenage]

We can certainly look at what the hon. Lady suggests. I am pleased that the operational delivery group, which I just mentioned, allows stakeholders to shape policy and it is really good news that Isabelle Garnett, Matthew’s mum, is a major contributor to this and liaises with NHS England directly on its programme around children either in hospital or at risk of being admitted.

The right hon. Member for North Norfolk asked why the evaluation was cancelled. As he knows, an evaluation sponsored by NHS England is already under way, and the Department, having invited bids for its evaluation, was not satisfied that the proposals received were what was needed. That does not mean that we are not absolutely determined to critically review progress, particularly working with stakeholders and users.

The right hon. Gentleman spoke about the “No voice unheard, no right ignored” Green Paper. Although I am always ready to bow to his incredible knowledge in this field, it is not entirely true to say that the Green Paper went unheeded. Some of the recommendations were overtaken by changes in Government policy, and indeed, in Governments, but we have taken forward work such as the named social worker pilot and a review of the Mental Health Act. We have asked Professor Sir Simon Wessely, the chair of the independent review, to listen to people with direct experience of the Mental Health Act and this, of course, includes autistic people and their carers. He published his interim report to update the Government on his progress, which sets out specific issues that we must explore to look at how we can improve the scope of the Act.

The hon. Member for Dulwich and West Norwood also spoke about training for teachers in autism. The Department for Education has funded training and support for teachers through the Autism Education Trust. That is in early years, schools and further education, and so far, 175,000 staff have been trained.

[Dame Cheryl Gillan]

Does my hon. Friend also welcome the fact that from September this year in initial teacher training, the possibility of having a module on autism will now be included? It is something that we worked very hard for and the Department for Education responded. This is about not just the historical training, which is so important, but the future training that is coming on-stream from September this year.

[Caroline Dinenage]

My right hon. Friend is absolutely right to raise that, and I am sure that its introduction is in no small part down to her incredible work.

Society has failed people with learning disabilities for too many years. Our aim is to put things right. People are at the heart of the transforming care delivery programme. The priority is to provide safe, high-quality care that is appropriate for everyone. We will continue to work with our partners to ensure that people with learning disabilities have the opportunity to live as full and independent lives as possible.

15:59

[Norman Lamb]

I think I can safely say that the debate this afternoon has reflected quality rather than quantity. I am not referring to my own contribution, of course. We have focused on an important issue, and I am grateful that the Minister has treated it with the seriousness it deserves. I want quickly to highlight the key things that I think she needs to focus on, and I would be delighted to meet her to discuss them, perhaps together with the key organisations that I referred to at the start.

The Minister did not particularly focus on children in her response. If we are to have a system that works in a sustainable way in the long term, keeping children out of institutions will be key to solving the problem, particularly given that the numbers have doubled in the past few years and that we are going in the wrong direction. I particularly commend to her the brilliantly led Starfish programme in Norfolk as an exemplar of what can be done to keep people out of institutions.

On workforce training, I was pleased to hear about the money—£10 million, I think—for postgrads, but we also need training for the frontline staff in community settings who make the return to the community possible. A really important point was made about Alderwood and the experience of the constituents of the hon. Member for Dulwich and West Norwood (Helen Hayes). I also talked about Fauzia in this context. Training is needed in how autism affects individuals. It is not just about training in autism generally. Understanding the impact on an individual is what is so important, as is wider community training.

The Minister said that mechanisms were now in place to shift money across. What I do not understand is why that does not appear to be working effectively enough. If it is there, why is it not happening routinely? Why cannot the money just shift to a local authority to facilitate a much-needed community place? I am reassured that the work will continue after March next year, but it needs a national programme. I am afraid that it cannot just be left to localities. We know that there are some great places around the country doing amazing work, but others are falling well behind. There needs to be an inspiring national drive and the sense of an imperative that things have to change, wherever people live.

On the cross-departmental work and the taskforce to which the right hon. Member for Chesham and Amersham (Dame Cheryl Gillan) referred, we must recognise the importance of employment opportunities. So many people can work and can be paid in work, and that of course relieves the burden on the statutory services. Understanding that, and recognising that housing plays a vital part in this—

[Caroline Dinenage]

Will the right hon. Gentleman give way?

[Norman Lamb]

Am I allowed to give way, Madam Deputy Speaker? I am coming to the end of my response very soon—

[Madam Deputy Speaker (Dame Eleanor Laing)]

Order. Technically, no. The right hon. Gentleman has a strict two minutes to sum up at the end. However, I recognise that really important issues are being discussed here, and the Minister clearly has something to add. I am not creating a precedent here, but I am, unusually, allowing her to intervene.

[Caroline Dinenage]

I am grateful to you, Madam Deputy Speaker. My lack of understanding of the rules is clearly shining through quite beautifully here. I completely forgot to say earlier that we have an inter-ministerial group on disability in society which met for the first time yesterday, and I hope that it will go some way towards achieving some of the improvements that the right hon. Gentleman wants to see.

[Norman Lamb]

I am very glad to hear that. I was unaware that I had only two minutes, so I am really sorry, but I am pleased that you are so chilled out this afternoon, Madam Deputy Speaker. I applaud you for that.

I am pleased that the Minister has said that we must learn the lessons from the mortality review. Also, we must recognise the critical importance of involving the individual and the family in the decision making and in shaping the programme, in every case. This is about human rights, and human rights are routinely being abused and ignored. That must end. I am grateful to everyone who has spoken in the debate to highlight the critical issues involved in giving people the chance of a good life.

Question put and agreed to.

Resolved,

That this House is concerned at the slow progress made under the Transforming Care programme, which was set up to improve the care and quality of life of children and adults with a learning disability and/or autism who display behaviour that challenges; recognises that a substantial number of people with learning disabilities remain trapped in, and continue to be inappropriately admitted to, Assessment and Treatment Units rather than living with support in the community; is further concerned at the lack of capacity within community services; notes evidence of the neglect, abuse, poor care, and premature deaths of people with learning disabilities; believes that the Transforming Care programme is unlikely to realise the ambitions set out in the Building the Right Support strategy before it ends in March 2019; calls on the Government to establish, prioritise, and adequately resource a successor programme that delivers a shift away from institutional care by investing in community services across education, health and social care; and further calls on the Government to ensure that such a programme is based on lifelong support that protects people’s human rights and promotes their independence and wellbeing.

[Alison Thewliss (Glasgow Central) (SNP)]

On a point of order, Madam Deputy Speaker. Is there a means of putting it on record that the House’s business has finished just after 4 o’clock, collapsing an hour early, even though our important debate on baby leave in the House got pulled because of insufficient time? I understand that both this afternoon’s Westminster Hall debates also finished early. Do you agree that there ought to be a better way of organising business in the House so that important issues that need to be discussed have the time they need for discussion when other business falls short?

[Madam Deputy Speaker (Dame Eleanor Laing)]

I understand the hon. Lady’s point and her frustration that the debate on proxy voting, which we were all looking forward to, has not taken place, but she will understand that time had to be given in today’s proceedings for the Home Secretary to come to the House and address an urgent and important matter that arose only yesterday and which no one could have predicted. I am also aware that the timetabling of today’s business was so arranged, with a 2.30 pm cut-off for the first debate, because the Government were anxious to protect the time for the important matter we have just discussed in Back-Bench time. In saying that, I hope that those observing our proceedings will appreciate that the lack of Members in the Chamber did not reflect the importance the House attaches to this matter. It is extremely important; some of us have been debating these matters here for decades and are finally beginning to make progress. So while I take her point—it is well made—the fact is that sometimes the House has to adjust to events in the world outside, and that was why the Home Secretary needed time this afternoon.