Anger as users and carers ‘left out’ of planning for NHS learning disability scheme

Activists and academics raise questions over NHS England project

Picture credit: Photofusion/Rex

Learning disability activists and academics have accused NHS England of failing to involve people with experience of services and their families in the development of a new group tasked with cutting the use of inappropriate hospital placements.

Yesterday NHS England announced that it had appointed Sir Stephen Bubb, chief executive of charity leaders network ACEVO, to head a group dedicated to ‘co-commissioning’ solutions to cut inappropriate placements. The group will report its findings in October.

In a blog post, Bubb said NHS England had “accepted” a plan for the scheme that had been drawn up by a group of “top” learning disability providers over a breakfast meeting. The plan envisages the closure of most inpatient facilities and the transfer of people to appropriate community placements. This could be achieved through investment in buildings and “sensible commissioning i.e. 10 year contracts”, Bubb wrote.

NHS England’s statement announcing Bubb’s appointment said that the scheme would be drawing on the expertise of “patients and carers” going forward. But user-led groups, family members of people with learning disabilities and academics expressed surprise that an initial plan for the project had apparently been agreed without the involvement of people with experience of using services.

‘People are sick and tired of not being listened to’

Shaun Webster, European project coordinator at user-led group Change, said: “We need to shut down institutions. People with learning disabilities have the right to live in the community with the right support but we need to be involved in the programmes that are being set up to try and make that happen.

“Where were user led organisations in the process of setting up this group? Where were their voices? For me, they [policymakers] are not learning any lessons. They say they want to help people with learning disabilities but to me they’re not including us. We need to work together on this. We held an event last month where people with learning disabilities had that voice. You could hear the passion and the fire…People are sick and tired of not being listened to.”

Gary Bourlet, co-development lead of self-advocacy group People First England, said: “I was surprised by the announcement. There’s no doubt people with disability should have been involved, particularly those with learning disabilities and autism, to plan this.”

Mark Neary, whose son Steven was in an inappropriate hospital placement for almost a year, said: “It feels like this hasn’t been very transparent. It appears that they’ve come up with the plan and in the [Bubb’s] blog, it says the plan has already been accepted.

“There doesn’t seem to have been any invitation of people and their families to join the group. On the guest list for the breakfast there didn’t seem to be anyone with learning disabilities or their families.”

Sara Ryan, the mother of 18-year-old Connor Sparrowhawk – whose death at a learning disability unit last year was found to have been preventable, told Community Care she shared Neary’s concerns over the lack of transparency. She also raised questions over how the group’s work would fit in with “the now limping” government-backed Winterbourne Joint Improvement Programme.

The Winterbourne improvement scheme was set up in 2012 to support commissioners to move more people out of hospitals into appropriate community placements. Last week the programme’s director, Bill Mumford, stood down following two safeguarding incidents in services operated by MacIntyre, the learning disability provider of which he is the chief executive. A replacement for Mumford has still to be announced. Earlier today, a post on the official Winterbourne View programme Twitter account said the programme looked ‘forward to aligning our work’ with the NHS England project.

‘Focusing on providers doesn’t work’

Professor Chris Hatton, from Lancaster University’s centre for disability research, said the NHS England group’s plan to focus on providers suggested some lessons from the Winterbourne View scheme’s lack of progress had not been learnt.

In a blog post, he said: “Surely one glaringly obvious lesson from the iterations of the Winterbourne View programme so far is that focusing on providers doesn’t work. Commissioning is weak and providers run rings round them already, and many commissioners and current providers have been resistant to the radical changes needed.”

He added: “Absolutely the last thing we need are more, in essence, block contracts that lock people into a service for 10 years. Commissioners need to be disentangling themselves from these types of contract to allow for the nimble commissioning of support that people actually want and need from a much wider range of organisations (the voluntary sector is vital here, but the interests of the voluntary sector as a whole are not necessarily the interests of the CEOs of the big organisations round the breakfast table).”

Community Care has approached NHS England for a response.

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One Response to Anger as users and carers ‘left out’ of planning for NHS learning disability scheme

  1. Gavin harding mbe July 19, 2014 at 7:47 am #

    As co chair of new transforming care Winterbourne view and engagement group I was disappointed to see that voluntary sector chief executive Stephen Bubb who been appointed by Nhs England had not spoken to people with learning disabilities or families including them in the breakfast club with United Kingdom biggest provider and not advised by his statement. Cause for last three years the minister Paul Burstow and Norman lamb in their role minister for social care have always consulted with people with learning disabilities and families through out the Winterbourne view project which Nhs England have know this.

    But to have biggest providers their going on about closing assessment and treatment units and condemning is hypercritical considering big or small service providers for people with learning disabilities cannot get their own house in order and some have more safeguarding issues going on then been in assessment and treatment unit that’s people who live in their own homes as tenants their staff treat it as work place not as it is someone home they are treating people with learning disabilities as their are children some staff when their bosses are not around you only have to watch them in the community. I am direct payments I never agreed with providers I feel it should be person with learning disabilities in control of their lives not staff and to have managers of houses where the person is tenant of surely breaches someone human rights and being controlled by staff their hear to work as support people and assisted them helping advising them not being controlling them working as their personal assistant. Yes assessment and treatment units big ones and learning disability hospitals as they private ones need to close. But we need have small assessment and treatment units but they need to change the way they work. As someone who has been assessment and treatment units in the past and being large mental health hospital I feel safer going in learning disability specialist unit then been in with other people cause it can be frightening and you feel very vulnerable when your not well with mental health issues that’s one thing Stephen Bubb one thing when I was in assessment and treatment unit other patients were made ill by providers cause of the way staff behaviour and how they deal with people with challenging behaviour they certainly did not prevent people going into one to say they supposing to be supporting them in the community. Ask yourself that. That’s biggest providers in this country and the small ones. And their are some families as well who been cause of people going in one. But we need to change the way providers work in community with their directors, managers , staff before moving people in the community.

    But one I do not agree with is providers been campaign groups groups that does not work as they carry to much baggage themselves. Until sort there own house in order. They help assisted but this should leave campaigning and to people with learning disabilities to
    self advocacy groups and organisations who put heart of people with learning disabilities as the voice who not providers and family carer groups who really believe in people should have rights and to national forum for people with learning disabilities and national valuing families forum to work together to be voice of people with learning disabilities and family carers.
    Self advocacy groups need to working together instead of working in isolation I know that’s hard with funding issues at moment and family carer groups need to do the same. But on winterbourne view we need to working together instead of fighting amongst each other I know I have said things that are conversional in my statement but if I am not honest then I would not true to myself and only saying what other people are thinking in the lives of people with learning disabilities and family carers have saying for years or keeping their private foughts to themselves but I will be working together with everyone including providers to help them too.

    I am looking forward to working and being co chair with Norman lamb even if politics are opposite to each other but we agree on one thing that lives of people with learning disabilities has to change.

    Look at care quality commission since David behan took over if he changed the organisation who was not working well three years ago so can rest of us. We need work together on this it won’t happen over night we will stronger together as team we may not disagree with each other but need to be strong.