Winterbourne View - Time is running out

7 months ago I produced my independent review on the failure of Government and the NHS to implement their promise to close all Winterbourne style institutions.  I made a number of recommendations.  I was also asked by NHS England to review progress after 6 months and then after a year.  I have just concluded my 6 month review and its published today.

I think the main messages are in my foreword so let me report that here:

Winterbourne View - Time is Running Out: Foreword

When Winterbourne View – Time for Change was published in November 2014, still more people with learning disabilities and/or autism were being admitted to inpatient facilities than being discharged. This is despite a promise from Government to close institutions such as Winterbourne View. Time for Change has been widely supported but I understood the deep scepticism of people with learning disabilities and/or autism and their families that anything would actually change. I am acutely aware that we do not just want more reports.

I believe that things have changed, and that we will see the closure of inappropriate institutions and the scaling up of community provision that has been needed for so long. The leadership being displayed by NHS England’s CEO, Simon Stevens, does give me that optimism. The Government endorsed my report and moved forward with a consultation on its recommendations, including the ‘right to challenge’ for people with learning disabilities and/or autism and their families. That is a step change.

The report laid out a clear roadmap of action – a new national framework in which commissioners choose community-based provision over hospitals. The programme would deliver closures and enable providers to work in partnership to offer new facilities, to ensure community support and independence for people with learning disabilities and/or autism. In particular I argued that people with learning disabilities and/or autism must have a central role in designing the care that will best meet their needs. And they should be able to challenge decisions when it does not.

There has been progress since the publication of my report. We have seen a definite shift in the direction and commitment to change which was not apparent when I started the review. At last we have an acceptance that institutions must close and I congratulate Simon Stevens on making his promise to the Public Accounts Committee that NHS England will produce a closure timetable. We expect this to be published in October.

The last Government were swift to move on the recommendations to strengthen the rights of people with learning disabilities and/or autism and their families. A consultation has been made through the Green Paper No Voice Unheard, No Right Ignored, which has seen over 400 responses. I look to the new Care Minister, Alistair Burt, to move on introducing legislation that will enshrine peoples’ ‘right to challenge’ in law.

The number of people being discharged from institutions is now greater than those being admitted. At the end of May 2015, over 1,700 Care and Treatment Reviews had been conducted. However it remains abundantly clear that a ‘revolving door’ of discharges and admissions will continue unless a closure and transition programme is acted on.

NHS England has made it a top strategic objective to improve the health outcomes for people with learning disabilities, by implementing new service models that provide care for people in their communities rather than in hospital. The Care Act is a landmark piece of legislation, and the Green Paper is progress that should not be underestimated. 

But the pace of change remains slow, and this is unacceptable. While a priority for NHS England, the Transforming Care programme has not yet delivered anything tangible in terms of new community facilities or closures.  This is worrying; robust community provision does not appear overnight. And yet the closure of institutions can only happen when there are sustainable alternatives built up by commissioners and providers.  

In responding to Time for Change, the Transforming Care partners committed to a series of actions. I accepted Simon Stevens’ proposal that my steering group be reconvened in 6 months to review progress and that a formal stock take of actions be taken in 12 months. So this report is a warning call – my steering group was clear on the changes that need to take place. Where positive step changes have been made, I have recognised the success. Where delivery has been lacking, my appraisal will be severe. 

I will be reviewing the adequacy of closure plans when published. The Transforming Care programme recently announced five ‘fast-track’ sites where services will be shifted away from hospitals. These sites will help shape the service model that is being developed to re-design care across England. A programme of action is clearly starting to take shape, but we must expect a closure programme to cover the whole country and not just five areas. We know that people with learning disabilities and/or autism are often in hospitals very far from their families – a nation-wide programme is therefore essential.

The scaling up of community provision is a fundamental part of this programme. Yet there has been little to no discussion with providers and stakeholders outside of the Transforming Care partners. Lack of communication from the centre prevents local commissioners and providers from readying themselves for change, or even being aware that they will be expected to respond to a new service model. 

That is why I have set up a Provider Delivery Taskforce, alongside the Voluntary Organisations Disability Group and Housing and Support Alliance. This will work with excellent providers of community-based care (using NHS England and LGA’s own ‘Ensuring Quality Services’ guidelines) to make sure they can be responsive and proactive in transitioning people out of institutions. But that is not enough. 

Time for Change was clear that building this capacity in the community is an absolute priority. But the two recommendations made to this effect – workforce development, and investment in community-based services –have seen little progress. This is unacceptable and risks undermining the work being done elsewhere to create a new framework of care for people with learning disabilities and/or autism. 

So I am now calling on NHS England to establish a Transition Taskforce which will be mandated to work with providers, commissioners, people with learning disabilities and/or autism and families to set out the national framework for scaling up community provision. It will plan for ‘shovel ready’ schemes that can be sustainably established to allow for the closure of institutions and the appropriate transition of individuals into the community. The Taskforce will examine the financial models that are needed, as well as how to secure a skilled workforce.

This will build on the excellent services that are already provided by charities and social enterprises, many of which pioneer innovative ways to support the wellbeing and independence of people with learning disabilities and/or autism outside of hospital settings. For example, there is wide-ranging good practice for staff training and Positive Behaviour Support. I am clear that restrictive practices, such as the use of mechanical restraint or seclusion have no place in the 21^st century of care for people with learning disabilities and/or autism, and this report gives recommendations to that effect. Given that it will take time to effectively transition care from institutions into the community, there must be steps taken now to ensure people are receiving the best support.

Since November, I have visited and spoken to a number of providers, as well as institutions about Time for Change. Any closure programme will lead to concern within this sector, especially the workforce, around whether such a shift can and will be managed effectively. Individuals with learning disabilities and/or autism, their families and carers cannot be isolated from the Transforming Care programme; they must be at its core.

I want to thank all of my colleagues on the steering group, and all those I have met or spoken to. In November, I cautioned NHS England and its partners to be realistic about the timeline for success – to not promise another ‘false dawn.’ However the call for urgent action remains and I will be holding Transforming Care to account on its commitment to deliver lasting change. 

I will review further progress at the year anniversary of the publication of Time for Change – the steering group will be reconvened on 7^th December 2015. I expect to see change being delivered on the ground. This is the opportunity for us, as a nation, to provide the care that people with learning disabilities and/or autism deserve and have been denied for so long.