Why the number of learning disabled people in hospital care remains stubbornly high

The number of people with learning disabilities in hospital placements has remained virtually unchanged for six months despite a national push to move them into community settings.

The latest Health & Social Care Information Centre figures for England show there were 2,600 inpatients with learning disabilities at the end of August, almost unchanged since March 2015 when the number was 2,640.

The figures show that 640 people were admitted over those six months while 690 people were discharged or transferred out of inpatient care. The data does not distinguish between new people being admitted and readmissions of people previously discharged.

Post-Winterbourne drive

The lack of change in the figures come despite the work of the government’s Transforming Care programme that was introduced in 2012 in the wake of the Winterbourne View abuse scandal with the express goal of reducing the use of inpatient care for people with learning disabilities and/or autism and additional mental health needs.

The original target of ending inappropriate hospital placements by June 2014 – an ambition expected to have brought numbers down into the hundreds – was wildly missed, forcing a reassessment of the programme in the latter part of last year.

Now, expectations are more modest. NHS England, which is leading on the programme, has a target of reducing inpatient numbers by 10% on the 1 April 2015 figure.

Rob Greig, chief executive of the National Development Team for Inclusion and the former government learning disability director, said the lack of progress raises questions about whether the focus of the Transforming Care programme has been right.

‘Missing the point’

“The rhetoric from a national level has been about what we do about the 2,600 or so people who are in these units and how there must be services planned to get those individuals out,” he said. “That’s true, but it completely misses the point that people find themselves in these services because of the failure of local community based services in the first place.

“It’s not just the 2,600 people who are in these establishments at the moment, it’s the two or three thousand whose services are on the brink of collapse at the moment too. You need to have systems to identify those people and intervene immediately but I don’t see what those systems are. Unless you put that in place you will for the next five years or more continue to see services collapsing and there being a risk that people will find themselves being sent to these places.”

Record of failure

Greig also questioned whether local health and social care commissioners are the best people to deliver change: “These commissioners who are expected to resolve things are the same commissioners who have been commissioning the services that are non-evidence-based and failing to date.

“What is it that makes us think that suddenly they will start doing things that we’ve known for 20 years need to be done when they haven’t done them over the past 20 years?”

He added that the five fast-track areas that have been tasked by NHS England with speeding up the redesign of services and developing a new models for commissioners offered a “glimmer of hope”, but questioned whether their work can be applied nationally without the extra funding the fast-track areas are getting.

Sarah Mitchell, director of sector-led improvement programme Towards Excellence in Adult Social Care at the Local Government Association, said the funding is an issue in developing new services to allow people to move back into the community as, aside from the £10m for the fast-track areas, the costs need to be met from existing budgets.

Personalised approach needed

“It’s a very real issue,” she said. “If you are looking at someone moving into a community based setting, obviously there is accommodation and the housing that has to be right for that person. It is a very personalised approach for people with challenging behaviour who may also have autism and you’ve really got to get it right for that individual. You can’t say, ‘Well, we know this works for this person so it will work for the other person’. It needs a very personalised care packaged and personalised accommodation and personalised support.”

Another pressure, she added, was the cost of ‘double running’ of services since the costs of inpatient care continues while developing new community services for them to move into.

There also needs to be local community health services, domiciliary care workers and personal assistants in place that can provide the care and support those leaving inpatient care need. “The most important thing is we do the right thing for those people who are currently in an assessment and treatment centre,” Mitchell said. “So that’s making sure whatever we do is absolutely the right thing for them in the timescale that is right for them. That’s the principle we should be following.”

In a statement NHS England said: “All the agencies involved in this work are clear that while a great deal of progress has been made we still have lots to do to transform and improve care for people with learning disabilities.

“We are committed to driving through changes at a fast but safe pace, we are on track to do so, and we will be setting out the closure and re-provision plans in October as previously announced.”

Start young

Ultimately, said Mitchell, there needs to be more work with families and their children early on. “We should start using personal health, social care and education budgets to really transform the type of care they get because a lot of families would say that if they had control of all the resources from a very young age it would have been a very different picture,” she said.

“One of the things we want to be able to say five years on is that we have really integrated personal commissioning budgets that aren’t just about health and social care but are also health, social care and education. That’s what will really shift this and make a difference.”