More than half of inpatients with learning disabilities in specialist care were put in seclusion, restrained or came to harm over a three-month period last year, research has found.
New analysis of the 2013 Learning Disability Census, published yesterday, found 57% of patients with learning disabilities, autism and/or “challenging behaviour” had experienced at least one “incident” between July and September 2013.
“Incidents” included being assaulted, subject to hands-on restraint, having an accident, being put in seclusion or self-harming. Some people may have experienced more than one incident in that time.
The census, by the Health and Social Care Information Centre (HSCIC), also found over two-thirds had been given anti-psychotic medication in the 28 days before the survey, with 93% of these people receiving the drugs regularly.
It said: “The reported incidence of use of anti-psychotic medication raises questions concerning the extent to which it may be appropriate.”
Figures in the report suggested that there had been little progress in improving the treatment of people with learning disabilities since the Winterbourne View scandal in 2011, despite a government programme to achieve this aim. The census said use of seclusion, hands-on restraint and self-harm had risen since the last “Count Me In” survey, a similar census carried out in 2010 by the Care Quality Commission. The percentages of patients who had an accident or had been assaulted only fell by a small amount between the surveys.
Target to end inappropriate placements
The government’s Transforming Care report, published in December 2012 in response to Winterbourne, set a target of ending all inappropriate hospital placements for people with learning disabilities or autism by 1 June this year. This target is now set to be missed.
It also said this group of patients should have a care plan agreed or reviewed by June 2013, setting out how they could be moved to community settings if possible.
However the census found nearly half of patients did not have a discharge plan, including 28% of informal patients. The report said informal patients – who are not detained under the Mental Health Act – “are potentially the most readily amenable” to being moved to community-based care.
Having a learning disability was the most common main reason for admission to hospital, cited in nearly 35% of cases. “Challenging behaviour” was only the third most frequently cited main reason for admission, given in 21% of cases.
Keith Smith, development manager at the British Institute of Learning Disabilities (Bild), said: “That suggests it is the lack of local tailored provision to meet the needs of a wide range of people who have learning disabilities – rather than people’s behavioural challenges – that makes the system fail.” He said there wasn’t enough urgency about changing the system.
Simon Shaw, policy and parliamentary manager at the National Autistic Society, said he was concerned about the lack of care plans for almost half the patients in the survey.
“Firstly, [I’m concerned because of] its potential impact on people living with autism, who struggle with change and require carefully managed transitions. And secondly, the lack of plans mean that people aren’t moving back to their communities or to appropriate community-based services quickly enough.”
Multiple use of restraint
Steve Sollars, whose son Sam was at Winterbourne View, said: “It is devastating to hear that this is still happening. My son, Sam, who was at Winterbourne View, was restrained 45 times in a six-month period. We will never know how much more he was subjected for the rest of his two-year time there. When he came out of Winterbourne View, Sam was unrecognisable because of what he had been through. He is now flourishing in the place where he is. Good care is possible and everything must be done to stop abuse and suffering of people who find themselves in similar places to Sam.”
In a joint statement, Jan Tregelles, chief executive of Mencap, and Vivien Cooper, chief executive of The Challenging Behaviour Foundation, said: “That some of the most vulnerable people in our society are in settings where they are regularly restrained, over medicated and kept in isolation is utterly disgraceful. In addition, the fact that this appalling ‘care’ is costing the public purse, in many cases, up to £4,500 per week demands that urgent questions are asked and answers provided.
“It is not enough for the government to say it should not be happening. It is happening to people’s sons and daughters, brothers and sisters and, what’s more, people are continuing to go into these places faster than they are coming out. The failure to stop this happening is an utter disgrace. We demand that the government takes urgent action and we expect to see immediate and real progress.”
Admission rates outstripping discharge rates
They highlighted an NHS England survey which said nearly twice as many people with learning disabilities were admitted to inpatient care as were transferred out of it between September and December 2013.
Eric Emerson, professor of disability and health research at Lancaster University, said: “I estimate the total direct costs of this provision to be in excess of £500m a year, of which £46m a year is spent on incarcerating children. For what? Putting people in places where they are at high risk of being assaulted, having an accident and being prescribed anti-psychotic medication, and not having a discharge plan in place.”
The census got information from 104 NHS and independent service providers about 3,250 people with learning disabilities, autism and/or challenging behaviour who were inpatients in facilities for mental or behavioural healthcare on 30 September 2013. An initial report was published in December 2013 and this report reveals the answers to some of the other questions asked by the survey.
The census was set up after the Transforming Care report said there should be an audit of services for people with challenging behaviour. The next census in September 2014 will include the same questions in order to see whether patients have been moved to community care.