Transforming Care Programme

Norman Lamb Excerpts

Thursday 5th July 2018 Commons Chamber

[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.

--- Later in debate ---

[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.

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[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.

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[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.

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[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.

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[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?