People with learning disabilities should be in 'homes not hospitals'

People living with learning disabilities and autism will receive support to lead more independent lives, following the publication of a national plan to improve learning disabilities services.

More than 2,500 hospital beds for people learning disabilities in England will be lost as a result of the new plans laid out by the NHS, which will see care moved into the community.

The plans will see the closure of the last NHS hospital to specialise in care for people with learning disabilities. Calderstones, near Clithereoe, Lancashire will be replaced with supported housing schemes, allowing for people with learning disabilities to have greater independence.

Chief executive of NHS England, Simon Stevens, said: “As good and necessary as some inpatient care can be, people with learning disabilities are clear they want to live in homes, not hospitals.

“We’ve seen some progress over the last few years, but now is the moment to grasp the nettle and build the excellent community-based support that will allow people to move out of hospitals.”

The announcement is part of the NHS’s Transforming Care programme which was established following the Winterbourne View scandal, when a BBC Panorama programme filmed staff abusing patients at a private hospital in Gloucestershire.

Hospital placements used as a long-term care option due to a lack of community-based support services

More than 20,000 people in England with learning disabilities or autism are classed as being at risk of admission and despite improvements in the number of discharges and transfers, there was a 38 per cent increase in the past year.

Over 2,500 people were in inpatient settings on 30 September and more than 75 per cent of those had been there for more than a year, while the average length of stay is 5.4 years.

In 2013, there were 3,250 people in inpatient settings, a figure which was reduced to 3,230 in 2014, showing very little improvement over the course of one year.

In many cases, placements are used as a long-term care option, due to a lack of community-based support services and costs the health and care system more than £175,000 each year.

The ‘Building the right support’ document, published by NHS England and the Local Government Association (LGA) and the Association of Directors of Adult Social Services (ADASS), lays out plans over the next three years that will proved more high-quality community-based services. Services that will be accessible by hundreds of people with learning disabilities and autism and better care options in the community, in place of hospitals, resulting in many not being admitted in the first place.

The plans are representative of some of the key points featured in the ongoing Transforming Care programme which has resulted in reforms, including the introduction of the Care and Treatment Reviews and upcoming consultation on strengthening the rights of individuals.

They allow for local areas to offer bespoke care and support services to those who need them, but establishes the need for:

• Local housing that can meet the specific needs of people with learning disabilities, where people can have their own home, but also have access to on-site support staff;

• An ambitious and rapid expansion of the use of personal budgets, which would enable people and their families to plan their own care;

• People with learning disabilities and autism to have access to a local care and a support navigator or key worker;

• Investment in advocacy services that are run by local charities and voluntary organisations, allowing families to access independent advice and support.

Plans could see a 50 per cent reduction in the number of inpatient beds

Mencap and The Challenging Behaviour Foundation welcomed the report, but raised doubts as to whether it addresses the cause of failure to deliver change, four and half years since the Winterbourne View scandal.

Jan Tregelles, chief executive of Mencap, and Vivien Cooper, chief executive of the Challenging Behaviour Foundation, said: “Today’s report is a start. NHS England and the Government must adequately fund local areas to deliver this change, as well as hold them to account, and intervene where change is not happening. People with learning disabilities, families and carers need to see change on the ground before they will believe progress is being made.

“Despite numerous reports and missed targets, the same number of people with a learning disability remain in these units. In the meantime they have often been at increased risk of poor care and even abuse.

“Whilst this report has strong ambitions which we welcome, significant questions remain unanswered. At this stage we were expecting a proper analysis of why there has been a lack of progress to date, alongside a well thought through, costed and robust implementation plan.”

Steve Sollars, whose son Sam was at Winterbourne View, said: “My son, Sam, who was at Winterbourne View, was restrained 45 times in a six month period. Sam was unrecognisable because of what he had been through. He is now flourishing in the place where he is.

“However, there are still far too many people in places like this getting high levels of restraint and medication, behind closed doors. It is shocking and very frustrating that this is still going on even after all these years. We have had enough talk, what we need now is action to bring about change for people with a learning disability and families.”

The plans have been developed with the contributions made by people with learning disabilities and autism, as well as their carers and families, commissioning groups, providers, representative groups and the voluntary sector.

It is hoped that as the plans are introduced and as new services are implemented, there will be a 50 per cent reduction in the number of inpatient beds, resulting in some designated care units closing completely.

In addition, the new plans should see hundreds of millions of pounds freed up for investment in community-based support services, as well as improving the quality of any remaining beds.

'The Transforming Care plan is aiming to improve how care is provided for people with learning disabilities'

Speaking on behalf of ADASS, president and vice-chair of the Transforming Care Delivery board, Ray James, said: “ADASS welcomes this clear and ambitious national plan and is committed to ensuring that people with learning disabilities are supported to lead meaningful, independent lives in their local community wherever possible. This is already the case in many parts of the country: it can and must be done everywhere else.”

Community well-being spokeswoman for the LGA, Cllr Izzi Seccombe, said: “Councils want people with learning disabilities to have access to the right care and support they need in the right place, at the right time. Local authorities and the NHS have been working hard to make progress in providing this, but we also know that there is still more to be done.

“It is right that the Transforming Care plan is aiming to improve how care is provided for people with learning disabilities, including autism, and this needs to happen urgently.”

A national NHS England fund of £45 million will be available to Transforming Care Partnerships over the next three years to aid a smooth transition into community-based services. While ensuring the right services are available in local areas to allow for the first discharges.

Director of corporate affairs for Leonard Cheshire Disability, Andy Cole said: “People with learning disabilities are clear they want to live in their community, not in hospital. We welcome the clear and ambitious steps and timetable set out in this report to ensure that everyone with a learning disability can lead full and independent lives in their own local communities.

“There now has to be some real and rapid action taken to offer a better future for disabled people, with the necessary funding and resource to make this ambitious vision a reality.”

Commenting on NHS England’s plans to transform learning disabilities services in England, deputy chief inspector of hospitals (lead for mental health), Dr Paul Lelliott, added: “We support the vision to create more appropriate models of care so that people with learning disabilities can live more independently and whenever in their best interests, receive the care and support they need outside of hospitals'.

“These plans herald a period of great change for services and, more importantly, for the vulnerable people concerned who rely on their care. It is vital that they, and their families and carers, are fully engaged in the individual decisions about their future care.”

“We are continuing to look at how we register potential new ‘assessment and treatment’ providers so that inappropriate models of care do not continue. We will publish an update on our plans later this year.”

Progress of the plans will be reviewed before the end of 2018 and an assessment will be made on whether the number of beds could and should be reduced further in the following years.