An NHS England-commissioned steering group tasked with cutting inappropriate learning disability hospital placements will fail unless it rethinks its priorities, experts have warned.
The Ideas Collective, an informal network of learning disability experts including carers and professionals (see box), said that the NHS group’s plan to develop a ‘closure’ programme for assessment and treatment units and related hospital settings placed insufficient focus on tackling the factors underpinning demand for beds, particularly poor support from community health and social care services. The collective was also critical of the fact the steering group membership only includes one person with a learning disability and one carer.
The NHS England group, chaired by Sir Stephen Bubb, chief executive of ACEVO, was set up in light of the failure to meet the government’s target to end inappropriate placements by 1 June, made in response to the Winterbourne View 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.
Signatories to the Ideas Collective letter include:
Dame Philippa Russell, former chair of Prime Minister’s carers commission and parent of a son with a learning disability
Rob Greig, chief executive of NDTi and previously the government’s national director for learning disabilities
Karen Flood, co-chair of the national forum for people with learning disabilities
NHS England published terms of reference for the group this week and revealed that it will be advised by a service user and carer reference group. At a meeting with members of the Ideas Collective, Bubb reportedly said that his steering group had four ‘core objectives’: the inpatient unit closure programme; the development of a ‘sensible commissioning framework’; a workforce development programme and a social capital programme for investment in community services.
In a letter to Bubb, the Ideas Collective said that the inpatient unit closure programme and social capital programme plans were “flawed”, particularly givenprevious statements that suggested the social capital programme would be used to fund “group homes and long-term provider contracts.” The collective also questioned how the commissioning framework could be effective if the NHS group “have been given no authority” over local authority commissioning.
In its letter, the collective told Bubb that his group had the “potential to achieve real change” if it revised its plans but warned: “If your group continues with the focus and priorities previously stated, then we fear that another opportunity will have been wasted and any change will merely be superficial and short-term – leaving other people with learning disabilities and families to bear the consequences in the years to come.”
On the ‘closure programme’ the collective said that the focus on closing units should be replaced by a wider project aimed at significantly reducing the number of assessment and treatment beds while recognising a small number will be needed in each area. This should involve ‘hands-on’ support for local authority and NHS commissioners, person centred design for all people currently in placements, and the creation of levers to require commissioners to follow best practice, the letter said.
“Demand has to be addressed and simply closing beds and moving people elsewhere will create a bottled up problem elsewhere in the system….If people are simply moved out of them without action to also reduce demand, the places will be immediately filled by new people who are being failed by local services,” the letter said.
Dame Philippa Russell, one of the letter’s signatories and parent of a son with a learning disability, said a comprehensive demand prevention programme was needed.
“Importantly we must find a better way of transferring resources currently locked into regional specialist commissioning back into the local authorities who will have the main responsibility for reintegration into families and communities,” she said.
“I see a real opportunity in the introduction of independent personalised commissioning, integrating both health and social care budgets and designing care and support around and with people. Without individualised and integrated care planning, families will again fail and people with learning disabilities will continue to be at risk of ‘exile’ to distant emergency services from which a constructive return will be difficult, if not impossible.”
The NHS England steering group, which will report its findings by the end of October, has triggered fierce debate since it was first announced last month. Learning disability activists expressed anger after a blog post by Bubb announcing the group suggested that plans had been drawn up by sector leaders behind closed doors without the involvement of users and carers. NHS England has moved to quell those concerns and insist families and users will be involved in the group.
An NHS England spokesperson said: “NHS England thanks the Ideas Collective for their letter and ideas, many of which we are already working on and we will be considering all the issues raised. We are working closely with people with Learning Disabilities, partners and stakeholders and will be publishing the steering group’s terms of reference, agendas and minutes on the NHS England website.”