Transforming Care Programme

Jim Shannon Excerpts

Thursday 5th July 2018 Commons Chamber

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

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

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

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

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

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

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

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

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

[Jim Shannon (Strangford) (DUP)]

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

[Dame Cheryl Gillan]

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

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

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

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

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

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

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

“Making plans for discharge and sticking to them”.

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