NHS EnglandSir Stephen Bubb, chief executive of charity leaders’ network ACEVO, has been asked by NHS England to head a new group of experts and advisors to develop a national guide on how to provide health and care for people with learning disabilities.  

But this announcement has been met with cynicism by some in the sector, who have questioned where this group fits within the current structure, especially in relation to the Winterbourne View Joint Improvement Partnership (JIP), and whether people with learning disabilities and their families will be at the centre of planning.

The group Bubb is heading up will also include healthcare, charity and voluntary sectors, as well as with people with learning disabilities and their families. It aims to design more innovative and integrated local commissioning of healthcare and housing to best support people with learning disabilities at home and in their communities, reducing reliance on hospital care.

The key objectives of the group, according to NHS England, are to:

Develop models for local implementation that meet the needs of people with learning disabilities and autism

Develop funding models for new services

Identify potential sources of social investment

Identify the best way for funding to meet individual needs

Seek input and guidance from partners working in this field.

Jane Cummings, chief nursing officer for NHS England, said: “Too often we see people being admitted to an inpatient setting and staying for long periods of time purely because this support is lacking. This is not good for patients and through the Winterbourne [View] Joint Improvement Programme, we are addressing this by ensuring local areas improve their discharge and care planning arrangements.

“But many areas need wider service redesign, greater integration and longer-term, sustainable solutions. We are seeing more co-commissioning with local authorities but this needs to be expanded and accelerated. We need to ensure that funding follows the individual. The new group will drive this, drawing on essential expertise from the third sector and importantly from patients and carers. I am pleased that we have the experience and expertise of Sir Stephen Bubb to lead this process.”

Bubb added: “The Government made a brave pledge to improve the quality of care for people with learning disabilities in the Winterbourne View Concordat. While I am delighted that Simon Stevens has asked me to help create a plan to support the Government meet that pledge, I am also determined to bring the experience and strength of the third sector to help transform care for people with learning disabilities.

“Co-commissioning with charities and social enterprises in this way is unprecedented in the NHS and offers new solutions to these problems. I believe that the third sector will bring the innovation required to create a sustainable ‘national framework, locally delivered’.”

The group will provide a final report by the end of October to inform commissioning and the Everyone Counts planning guidance refresh.

Questions asked

But Professor Chris Hatton from the Centre for Disability Research, Lancaster University, and a co-director of Improving Health and Lives, the Learning Disabilities Public Health Observatory, has questioned the purpose of the group. In a blog [http://chrishatton.blogspot.co.at/2014/07/deja-vu-all-over-again.html] he asked: “Where are people with learning disabilities, families and allies, in any of this process? Certainly not at the heart of decision-making and power here, which is absolutely essential… A cursory look at the #justiceforLB #107days campaign, or conversations with any number of superb self-advocacy and human rights organisations led by people with learning disabilities, makes the centrality of this so clear.”

Blogger and campaigner @Sarasiobhan – the mother of Connor Sparrowhawk, who died in an assessment and treatment centre and is behind the #justiceforLB campaign – also questioned the apparent lack of engagement with people with learning disabilities and their families. [http://mydaftlife.wordpress.com/]

Hatton also questioned what the group’s relationship is to the Winterbourne View JIP and the work already being done to move people out of assessment and treatment units, as well as the focus on the voluntary sector and providers. 

“There is good evidence on how all people with learning disabilities can be supported in their own homes to live meaningful, fulfilling and self-determined lives,” he wrote. “We have the examples of successive waves of institutional closure programmes for people with learning disabilities in the UK and internationally to draw on... Why not apply these?”