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.

http://www.communitycare.co.uk/2014/07/16/