Last week saw the publication of the ‘Bubb Report’, the product of the working group commissioned by Simon Stevens, CEO of NHS England to make recommendations on a new commissioning framework for services to people with learning disabilities and/or autism who are currently in inappropriate hospital placements.

The working group was chaired by Sir Stephen Bubb, the Chief Executive of ACEVO, the Association of Chief Executives of Voluntary Organisations and got off to an inauspicious start as people with learning disabilities and family members felt shut out of what as seen as a top down process. The group however was broadened and the report, now published, aims set out a new commissioning framework to tackle the development of community based services.

The group is tackling a major problem of inertia and perverse incentives which have existed for many years and resulted in many people being placed in units, often away from families and local communities. The Government set an ambitious target for reducing this number as a result of the Winterbourne View scandal, but this was not only missed, but figures now show that there are actually more people being admitted to such units than are being discharged, prompting care minister Norman Lamb to call the response thus far ‘an abject failure.’

Present position ‘unacceptable’

The report states that the starting point is that

it is not acceptable in the twenty-first century for thousands of people to be living in hospitals when with the right support they could be living in the community”

The recommendations therefore suggest actions that are for NHS England, local government, central government and other Arms-Length Bodies) but also that seek to empower people with disabilities and their families.

Bubb reiterates the key points put forward by Mansell as far back as 1993 (and again in 2007) that there needs to be both community-based support services with sufficient skills and expertise in order to support people discharged from in-patient, but also investment of time and energy in supporting people in the community to prevent admissions in the first place. Mansell for example talked about four sub-systems of activity that included crisis management as well as prevention and skilled support.

We know what good looks like

Bubb et al point out that there is good evidence of ‘what good looks like’ as well as a clear understanding of does not work and what should be avoided in service design and delivery. There is now a growing body of evidence that services designed on the principles of Positive Behavioural Support using good functional analysis are delivering positive outcomes for people. (Gray et al 2014)

They also point to the Concordat which set out the need for pooled budgets, joint local commissioning plans and better person centred planning and outcomes monitoring.

What the authors suggest however, is that this vision, whilst necessary, is not sufficient to overcome the in-built inertia in the system. They suggest that this makes it easy to continue with the status quo and does not incentivise change or penalise poor performance.

Recommendations of the Bubb Report

The report recommendations focus therefore on

• Strengthening rights
  • Through a Charter of Rights for people with learning disabilities and/or autism and their families to underpin commissioning.
  • The Charter to include the right for people with learning disabilities and/or autism and their families to challenge’ decisions to admit or continue keeping them in inpatient care.
  • There should be independent expert support to exercise that right, including high-quality independent advocacy.
• Better individualised commissioning arrangements
  • More people with learning disabilities and/or autism should have the right to a personal budget
  • Existing home tenancies to be protected when people are admitted to hospital
• Improved commissioning
  • Introducing a Mandatory Commissioning Framework requiring pooling of health, social care and housing budgets, with commissioning decisions made as locally as possible
  • A joint long-term plan for spending to help unblock systemic barriers (including Ordinary Residence rules and eligibility for Continuing Health Care).
  • A named lead commissioner in each area
  • Community-based providers to have the ‘right to propose alternatives’ to inpatient care to individuals
• Closures of inpatient institutions
  • Active decommissioning to be driven by tougher approach from the Care Quality Commission
• Building capacity in the community
  • Creation of a national workforce ‘Academy’ to develop the workforce across the system
  • A ‘Life in the Community’ Social Investment Fund to be established to expand community-based services
• Holding people to account
  • Improved collection and publication of performance data
  • Local commissioners and national bodies to be held to account for implementing the recommendations

What next?

The report has been broadly welcomed, but at present the recommendations are just  that – recommendations and as Rob Greig points out in his blog in response to the report, the recommendations are suggesting the creation of an NHS commissioning framework, but that “the failure of both social care and health care creates demand,” and consequently a joint framework, ideally led by local government, is needed.

This is an ambitious vision for change in a system that has continued to hold firm in the face of national outrage following the Winterbourne View scandal and will require:

• clear leadership for change
• sharing power with people with disabilities and their families
• improved information
• better person centred planning
• changes in working cultures
• improved wok practices
• a focus on improving skills in working with positive behavioural support
• improving the competencies of local commissioners.

However, large sums continue to be spent on inappropriate and ineffective solutions – sometimes as much as £4,000 per week per person – but as the report states, we know how to spend this money more effectively. We need to ensure that the local arrangements for commissioning allow and support this to happen, in ways that do not simply recreate in community settings, the attitudes, culture and practices that we are trying to overcome. This will take time, commitment and patience.

As Jan Tregelles (Mencap) and Viv Cooper (Challenging Behaviour Foundation) point out in their joint response to the report:

People with a learning disability and their families have been repeatedly let down by the failure to achieve the change we all want to see.”

We do not want to see this pattern repeated in the response to these recommendations in the coming years.

Link

Bubb S. Winterbourne View – Time for Change:  Transforming the commissioning of services for people with learning disabilities and/or autism (PDF). A report by the Transforming Care and Commissioning Steering Group, chaired by Sir Stephen Bubb – 2014 (PDF File)

https://www.acevo.org.uk/sites/default/files/STRICTLY%20EMBARGOED%200001%2026%20Nov%20-%20Winterbourne%20View%20Time%20for%20Change.pdf

References

Services for People with Learning Disabilities and Challenging Behaviour of Mental Health Needs (1993), and revised edition (2007), Mansell J.

Positive Behavioural Support as a Clinical Model within Acute Assessment and Treatment Services, Gray D et al., in International Journal of Positive Behavioural Support, 3,1, 4-46