Building the Right Support: Inertia is not an option

Frequent use of physical and chemical restraint. Being forced to live in long-term segregation and seclusion. Prevented from having regular social contact with loved ones. Being behind lock and key far from family and friends. These are examples of the unacceptably low standard of ​‘care’ experienced by that many of the over 2,000 people with a learning disability and autistic people who are inpatients on mental health wards in England, right now. Some people have been held on these wards for years and years.

Alongside this, there are many people with learning disabilities, autistic people and families who are struggling with inadequate support, inappropriate housing and a lack of expertise on-hand – especially to respond supportively to behaviour which is seen as very challenging. These are the next generation of people who, without quality community-based support, may be admitted to hospital in future, and have relationships with loved ones eroded by distance and trauma. 

Last week, the government published its Building the Right Support Action Plan to reduce the number of people with a learning disability or autistic people who are held in mental health inpatient services. Given the awful experiences people currently face, I desperately want the plan to succeed.

On first impression, the action plan seems comprehensive, with a great number of measures that build on the multiple reports and reviews that have preceded it. This includes the NICE guideline I was involved in developing a few years ago which set out some of vital ingredients to making the necessary change, some of which have been clear from as long back as 1993 with the Mansell report. I know that a great deal of effort is being made by many highly skilled and committed people. 

However, I’m yet to be convinced that the Action Plan marks the decisive point that it needs to be to move at pace to end the shocking treatment of so many people, and to support people to live fuller and better lives. The slow progress of the past years has demonstrated that a series of workstreams, no matter how well-intentioned, cannot deliver real change without the political will to ensure urgency and sustained pace. 

Former Minister Sir Norman Lamb was passionate and committed to achieving change but has described how the voluntary approach of Transforming Care has ultimately failed. The Building the Right Support Delivery Board is proposed as the key driver for delivery of the Action Plan. The Board is heralded by the Action Plan as a critical break with past to provide confidence that change is coming. I hope that this is true. Yet, on first impression, the similarity with past commitments appears greater than the difference. If people are to live the lives they want rather than suffer the inhumane and degrading treatment too many have to endure at the moment, the Delivery Board will need to provide real clout across the accountable public bodies.

By and large, we know what needs to be done – which makes me certain that change is contingent on political will and leadership. We need focus and diligent prioritisation at a time of huge demand on health and social care services. In particular, we must concentrate our energies and resources on the following actions.

We must invest in the rapid enhancement of community-based support, expertise and in appropriate housing provision wherever it is lacking. Funding flows and financial incentives must be aligned and take account of the findings of the Red Quadrant report which was published alongside the Action Plan. 

We must adopt without delay and further strengthen the proposed new duties in the draft Mental Health Bill on local government and the NHS to ensure an adequate supply of community services for people with a learning disability and autistic people, and ensuring that this is delivered in practice. The pathway to hospital admission and continued detention is paved with the failure to support people in their local communities. 

We must empower and raise up the voices of people who use services and their families, including through national commissioning of high-quality independent advocacy on an ​‘opt out’ basis. We must listen to people who have lived experience of this broken system so that as we build a new approach, we have co-production at its core and we get it right.

We must extend and make full use of the regulatory regime we have available. The Care Quality Commission (CQC) has new powers to oversee and attend to the quality of services and care provided by Integrated Care Systems and local authorities. They should assess and drive improvements to the way in which local health and care systems anticipate and respond to the needs of people with learning disabilities and autistic people who are in hospital, or who are at risk of admission to hospital. Admission to hospitals which continue to be rated as ​‘requiring improvement’ should be restricted. The CQC should take regulatory action against hospitals who state they provide assessment and treatment but which do not provide the support required to enable people to leave hospital in a timely manner, as proposed in the Voluntary Organisations Disability Group’s A time for action report.