NHS England: learning disabled people will not be left out of group to shape future of care

Chief nursing officer seeks to address service users and campaigners' anger over creation of steering group to lead post-Winterbourne response

Jane Cummings
Chief nursing officer Jane Cummings

NHS England has sought to address learning disabled service users and families’ anger over their lack of involvement in the creation of a steering group to help cut inappropriate hospital placements in the wake of Winterbourne View.

Chief nursing officer Jane Cummings pledged that service users and families would be fully involved in the group and that its membership and terms of reference were yet to be decided, in response to concerns that plans had been drawn up by sector leaders behind closed doors.

The steering group is being set in response to the failure to meet the government’s target to end inappropriate hospital placements by 1 June, made in response to the Winterbourne abuse scandal. About 2,500 people with learning disabilities or autism and additional mental health needs remain in hospitals in England, with just one-third of these due to move out within the next year.

The blog that sparked anger

News of the group broke this week in a blog post published on Monday by the person appointed to lead it, Stephen Bubb, chief executive of the Association of Chief Executives of Voluntary Organisations (Acevo).

Bubb said that he had been approached by NHS England chief executive Simon Stevens to develop a fresh plan to make progress on the government’s commitment, and had drawn up such a plan in a breakfast meeting with voluntary sector learning disability provider chiefs. This would involve “the closure of most or all of the current inpatient facilities and the transfer of clients to appropriate community placements near their families”, through investment in buildings and 10-year contracts for community-based care and support, financed by social investors.

One thing I’m crystal clear about is that we will involve people with learning disabilities and their families in whatever we do.” Jane Cummings, chief nursing officer

He then said the plan had been accepted by NHS England and he had been appointed to chair a steering group to deliver on it.

While NHS England put out a statement on the same day saying learning disabled people and their families would sit on the group, user-led bodies and campaigners expressed their anger on social media at their lack of involvement in the work to date.

In response, Cummings, who leads for NHS England on the Winterbourne programme, stressed that matters were at an “early stage”, and that no plan had been agreed to transform services.

No plan agreed

“We haven’t yet got a plan that says we are going to do a, b, c and d – what we are saying is that we need to create a new plan,” she said. “We haven’t agreed the membership of the group or the terms of reference. One thing I’m crystal clear about is that we will involve people with learning disabilities and their families in whatever we do.”

She said that since news of the group was announced, NHS England had been “inundated” with requests to take part.

“How we harness that energy is something we are thinking very carefully about, so that we don’t irritate people by not involving them in the steering group,” she said. “We can’t have 50 or 60 people sitting around the table but we need to ensure that they can really contribute to the plan.”

Bubb’s blog was also criticised – by leading learning disability academic Chris Hatton – for its reference to 10-year contracts and buildings-based solutions to the problem of inappropriate placements, saying this was “absolutely the last thing we need”.

However, Cummings said this would only be part of the solution.

“Some of it is about buildings – as Stephen Bubb says in his blog – but some of it is about putting more support in people’s homes. It can’t be a one-size-fits-all solution,” she said. “We also have to challenge the status quo and how existing services are provided.”

How charity consortia’s’ proposals led to steering group

The steering group arose from the submission of two papers to NHS England about how to tackle the persistence of inappropriate hospital placements, by voluntary sector organisations.

In a paper to NHS England’s board meeting on 3 July, Cummings said: “Two separate consortia of 3rd sector organisations have made proposals that provide a different focus to the programme including much greater involvement of 3rd sector organisations…A new programme steering group with the specific remit of establishing new ways of working will be established. This will be chaired by a representative from the 3rd sector, and include representatives of the organisations who submitted the two papers.”

It is not known which organisations – besides Acevo – submitted the papers, though Mencap confirmed it was not one of them. But, despite full membership of the steering group not having been confirmed, the chief executives of Mencap and the Challenging Behaviour Foundation have already agreed to take part.

Mencap chief defends involvement

In a blog posted yesterday, Mencap chief Janine Tregelles defended her involvement in the group in the light of the criticisms, saying that it was “the only opportunity I see to transform the lives of people”, and that it was better to shape its work than “sit on the outside and critique activity”.

But she said that the group would not succeed without the full involvement of service users and their families, adding: “Along with my colleagues, such as Viv Cooper [chief executive] of the Challenging Behaviour Foundation, I will make sure that people with a learning disability and their families are at the heart of its work.”

Both Tregelles and Cooper, in a separate statement, raised questions about the links between the steering group and the Winterbourne View Joint Improvement Programme (WVJIP) – the Department of Health-funded scheme set up in 2012 to help commissioners deliver on the government’s objectives.

The WVJIP, which is overseen by NHS England and the Local Government Association, was rocked last week by the resignation of programme director Bill Mumford, as a result of two safeguarding incidents at MacIntyre, the learning disability provider of which he is chief executive.

In a tweet on Wednesday, the WVJIP said it would align its work with that of the Bubb steering group.

Future of improvement programme under discussion

Cummings said the future governance of the response to Winterbourne View, including the WVJIP, was under discussion: “With Bill Mumford going, one of the things we are looking at, both with the Department of Health and the Local Government Association, is what should the governance be and how can we best create a governance structure to enable us to deliver. We haven’t confirmed how things are going to work. Whatever comes out of that, the group that Stephen Bubb is chairing and the other work needs to be in partnership.”

The DH said the JIP’s improvement advisers – Stephen Taylor and Zandrea Stewart – continued to work with commissioners and providers to reshape services, and that it would ensure alignment between the different pieces of work.

The WVJIP has a specific engagement strategy to ensure that people with learning disabilities and their families inform its work, including through representation of user forum the National Forum of People with Learning Disabilities on its board.

Cummings said the JIP’s engagement work had informed NHS England’s thinking in establishing the steering group. She said that more information on the make-up and terms of reference of the steering group would likely be available early next month.

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2 Responses to NHS England: learning disabled people will not be left out of group to shape future of care

  1. Cath Dyer July 20, 2014 at 11:36 am #

    We live in Wales, and yet our autistic daughter, 20, is currently having assessments from hospital units 4 hours away, and 5.5 hours away in order for her to have to go into one ASAP.

    It is against her wishes, and ours as her parents.

    She is heartbroken, and although she has been on MHA section 3 since 9.9.13 she has been home with us and in the community with us 252 times out of 312 days. She loves being us, and seeing us almost daily.

    It’s absolutely ridiculous and disgusting.

  2. Leo Andrade July 20, 2014 at 10:45 pm #

    http://www.change.org/en-GB/petitions/sue-powell-i-m-calling-for-nhs-islington-islington-social-services-to-bring-my-son-closer-to-our-family-home-not-have-him-hundreds-of-miles-away. Please read my petition. Then please pass on that to NHS England. See if hey have done anything about it … Post winterbourne situation yet my son was sent to a mental hospital. Still there 17 months later.