NHS EnglandEnsuring high quality community-based alternatives to hospital are in place and tightening regulation and inspection of service providers are two key ambitions to overhaul services for people with learning disabilities, according to a report published today.

The report, Transforming Care for People with Learning Disabilities – Next Steps, is the latest stage in responding to the recommendations of Winterbourne View – Time for Change, an independent report commissioned by NHS England last year.

The report sets out a series of ways in which NHS England, the Local Government Association, the Association of Adult Social Services, the Care Quality Commission (CQC), Health Education England and the Department of Health, intend to improve the quality of life of those with learning disabilities by substantially reducing the number of people placed in hospital and the length of time they spend there, and enhancing the quality of hospital and community settings.

Plans to achieve these ambitions include:

Empowering people and their families by giving them the means to challenge their admission or continued placement in inpatient care through an admission gateway process and Care and Treatment Reviews, reducing the number of admissions and speeding up discharges

Getting the right care in the right place by working with local authorities and other providers to ensure high quality community-based alternatives to hospital are available, meaning more people can get the support they need close to home

Driving up the quality of care by tightening the regulation and inspection of providers, including closing poor quality settings and preventing inappropriate new settings from opening

Strengthening accountability for improving outcomes by reforming contracts, including giving commissioners the ability to fine providers who fail to meet care standards or an individual’s personal objectives

Increasing workforce capability by working with patient and carer groups to address gaps in skills, best practice and staff awareness of learning disabilities and mental health problems.

In the past few months, NHS England has undertaken a major programme of Care and Treatment Reviews for those who had been in hospitals or institutions the longest. To this end, 1,032 reviews have been completed and 566 inpatients had been discharged by mid-January. NHS England expects discharges to increase in the coming months as Care and Treatment Reviews become mainstreamed.

The system-wide response will be spearheaded by a new Transforming Care Delivery Board, which comprises senior representatives from each organisation responsible for delivery. Engagement and involvement of people with learning disabilities, their families and carers, and other stakeholders will continue to be a vital part of this programme.

A Reconfiguration Taskforce will also be established to help local leaders drive through the changes at pace in the North of England over the coming months, with the learning from that region helping to inform the national rollout.

Key priority

Jane Cummings, chief nursing officer England, said: “People with learning disabilities and their families have rightly demanded action on this, and there is nobody more frustrated than me that progress so far has not matched those calls.

“Providing the best and most appropriate care and support for people with learning disabilities and their families is a key priority for all the agencies involved in this report. There are no quick fixes, but nobody is happy with how things have been done for decades, and we are determined to drive through change quickly and safely.

“We have made some progress since we commissioned and received an independent report to chart a new way forward, carrying out over a thousand Care and Treatment reviews and transferring hundreds of people from institutions to community-based placements, but we know that there is much further to go.

“These plans, and the plans which will follow, represent a concrete and system-wide commitment to work together as agencies alongside people with learning disabilities to greatly improve how we care for them, and demonstrate our high ambition for their futures.”

David Behan, chief executive of the CQC, added: “Through our inspections and from what people tell us, we will determine whether services are providing care that is safe, caring, effective, responsive to people’s needs and well-led.

“If we find that providers are not offering care of the quality we expect of them, we will hold them to account to make the required improvements.

“Also, if we ever have concerns about a provider’s ability to meet these standards when they apply to register with us, or make an application to change their registration, we will want to be satisfied that the provider has the capacity and capability to provide services which are high quality, compassionate, safe and focus on promoting independence. Within the registration legislation we have the power to refuse applications and would not hesitate in doing so to ensure people are protected.

“At all times, we are on the side of people who use services.”

Not enough to deliver Bubb recommendations

But the report has received a lukewarm response from charities in the sector. In a joint statement, Jan Tregelles, chief executive of Mencap, and Viv Cooper, chief executive of the Challenging Behaviour Foundation, said: “Today’s publication by NHS England and its partners is the first recognition that collectively they understand the scale of the problem but does not do enough to take us nearer to delivering the key recommendations from the Bubb report.  

“There needs to be a clear, timetabled nationwide closure programme and investment in and development of local services, so thousands of people can be brought out of inappropriate settings and returned to their local community with good support. It will disappoint thousands of people with a learning disability and their families, who have been fighting for their right to be supported in the community, and for changes to the way support is provided for people with a learning disability and behaviour described as challenging.

“After the scandal of abuse and neglect at Winterbourne View, the government promised change. Following the failure to meet the June 2014 deadline to move people out of institutions, NHS England took a lead in driving forward urgent changes. They commissioned Sir Stephen Bubb’s November 2014 report, which set out clear recommendations. Bubb called for closure of units providing inappropriate care, the development of local housing and support services, and new training initiatives to develop the right skills and expertise to commission and deliver better care and support. Today, these recommendations have not been adequately addressed, leaving thousands of families whose loved ones are stuck in units still wondering when change will happen.

“Alarmingly, we know more people are still going in than coming out of units, while many people have been in them for years.  We need to see a systematic change to commissioning practices across health and social care, and joint working to create local services to both prevent in-patient admissions and enable people to return to their communities.”

Jolanta Lasota, chief executive of Ambitious about Autism, also expressed her frustration at the slowness of progress, but welcomed the introduction of Care and Treatment Reviews. “It’s really important that families can challenge any care provided but it’s equally important people with learning disabilities or autism themselves are supported to do so too,” she said. “This support must be independent to ensure that patients’ voices are truly heard. 

“We urge government and local authorities to act on the advice of NHS England and its partners to facilitate the commissioning of community-based services so families remain intact and people with autism can fulfil their potential.”