Transforming Care Programme

Luciana Berger 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.

[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.