‘Hundreds of learning disabled people excluded from Winterbourne support scheme’

Charities warn that number people with learning disabilities being supported to move out of hospital may fall far short of total number in inpatient settings.

Hundreds of learning disabled hospital patients may have been excluded from the government’s Winterbourne View programme to help them move into the community, warn charities.

NHS England, which oversees healthcare commissioning, has revealed that 1,317 people with learning disabilities or autism and behaviour that challenges services had been registered as being in NHS-funded hospitals as of 1 April.

Of these, 1279 (97%) have had their care and support needs reviewed by clinical commissioning groups (CCGs) and councils with a view to them being moved into community-based care by the government’s target of June next year. The rest of the reviews are due to be carried out by the end of July.

However, the number of people registered falls far short of the 3,400 people who were counted as being in NHS-inpatient learning disability beds in 2010. Mencap and the Challenging Behaviour Foundation warned that the figures suggested many people in inpatient settings could be missing out on support to move into community-based settings.

‘Deeply concerned’

“We are deeply concerned that the registers only record a fraction of the people whose situations need to be scrutinised,” said the two charities chief executives, Jan Tregelles (Mencap) and Vivien Cooper (CBF). “Previous reports indicated that about 3,500 people were living in health settings, including assessment and treatment units similar to Winterbourne View.”

In a paper to this month’s meeting of the government’s Learning Disability Programme Board, NHS England said more work had to be done to ensure that the registers were comprehensive and were capturing people in services commissioned centrally by NHS England, rather than locally by CCGs. These include secure settings and children and young people’s mental health services (Camhs) in particular.

It said it was carrying out an exercise this month to ensure clients in these services were registered so they could have a review of their needs and be supported to move into community-based settings by 1 June 2014. This will involve working with Camhs and secure providers to draw up a list of clients.

Initial guidelines ‘not specific’ on who should be included

Initial guidelines on who should be included on the registers were “not specific”, said a spokesperson for Gateshead, Newcastle North and East, Newcastle West, North Tyneside and Northumberland CCGs. The five CCGs accounted for 34 of the 38 registered patients who had not had their needs reviewed by the start of this month.

“Local CCGs omitted complex rehabilitation patients from the original exercise in error, these have now been included and as highlighted in the report from NHS England all outstanding reviews will be completed by end of July, in fact many of the reviews have already been completed,” added the spokesperson.

The 3,400 figure was derived from the last Count Me In Census, which provided an annual stocktake of people in inpatient mental health or learning disability beds until 2010. Of the 3,400, 1,200 were deemed to be in assessment and treatment centres like Winterbourne View – services designed to provide temporary care for people whose community placements have broken down with a view to helping them return.

Beverley Dawkins, Mencap’s national officer for profound and multiple learning disabilities, said she was concerned people who had not been placed in assessment and treatment units may not have been registered by clinical commissioning groups.

‘Confusion’ over assessment and treatment units

“There are people in NHS-funded beds that may be described as ‘rehabilitation beds’ or ‘step-down beds’,” she said. “My first reaction is that there may be some confusion [about who should be counted].” “Just because someone is not in something called an assessment and treatment unit doesn’t mean that they are not at risk. People have experiences in a range of settings that are pretty troubling.”

A Department of Health spokesperson said it was carrying out audits of the number of people with learning disabilities or autism and challenging behaviour in NHS-funded beds in the summer and autumn because the “data available…is not as robust as we would like”. 

“The estimate of 3,400 people in NHS funded inpatient beds in the report was based on a 2010 Count Me In Census,” he added. “This estimate included some patients who could be in other types of units not falling within the description of assessment and treatment centres.”

Were targets met?

Under the government’s Winterbourne View improvement programme, commissioners should have set up registers of NHS-funded people with ‘challenging behaviour’ by 1 April and reviewed their needs by 1 June.

Care services minister Norman Lamb has warned that CCGs and councils that failed to meet the targets would be “named and shamed”. A letter from NHS England deputy chief executive Barbara Hakin, also published as part of the agenda of this month’s Learning Disability Programme Board meeting, suggested about 60% of registered patients had had their needs reviewed by 1 June.

The government has funded NHS England and the Local Government Association to deliver a joint improvement programme to support commissioners deliver on the Winterbourne View targets. The programme has surveyed CCGs and councils for a stocktake on progress to support people to move from hospitals into the community, which includes questions such as:

  • Is there a pooled budget to support people with ‘challenging behaviour’ or clear arrangements to share financial risk between CCGs and councils?
  • Do you have a joint, integrated community team to support this client group and does it have the capacity to deliver on the Winterbourne programme?
  • Are the interests of service users and their carers being supported by named workers and/or advocates?
  • Is there confidence that comprehensive local registers of people with behaviour that challenges have been developed and are being used?
  • Where people are placed out of area, are you engaged with local safeguarding arrangements?
  • Are you confident that the 1 June 2014 target will be achieved?

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