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.