Jan Tregelles MencapThe majority of people with learning disabilities living in hospital-style institutions are regularly given anti-psychotic drugs and have been subject to an incident of assault, restraint, seclusion or self-harm, according to newly-revealed figures.

The report of further findings from the 2013 Learning Disabilities Census, by the Health and Social Care Information Centre (HSCIC), focused on the conditions that people with learning disabilities were living in at assessment and treatment centres.

These findings follow an earlier report, published in December 2013, which found that 6 in 10 people with learning disabilities who are inpatients in hospital-style institutions have lived there for more than a year and, of those, more than a quarter have been resident for more than 5 years.

The new report found that of the 3,250 people living in institutions on September 30, 2013:

More than two thirds of service users (68.3%) had been given anti-psychotic medication leading up to Census day. Of these, 93% had been given them on a regular basis

More than half (56.6%) had been the subject of at least one incident involving self-harm, an accident, physical assault, hands-on restraint or seclusion during the three months preceding the Census. Proportionally, more females experienced every type of incident than males

Almost half (46%) were in receipt of an active care plan without a discharge plan in place. About 1 in 20 (4.7%) were experiencing a delayed transfer of care

78% were subject to the Mental Health Act 1983 with the remaining 22% classed as informal patients

Care for the majority (86%) between an estimated £1,500 and £4,499 per week, with the highest proportion (37.9%) being in the £2,500-£3,499 range. For 11.4% care provision was reported to have cost more than £4,500 per week

There also seemed to be a correlation between cost and distance from home: 19.6% of service users staying 100km or more from home were in placements costing more than £4,500 per week. By contrast, 34% of those staying within 10km of home were in placements costing under £2,500 per week.

“Profoundly worrying”

The HSCIC’s findings have been met with dismay by learning disability charities. Jan Tregelles (pictured), chief executive of Mencap, and Vivien Cooper, chief executive of The Challenging Behaviour Foundation, commented in a joint statement:

“In December, we were told that two and half years on from the Winterbourne View scandal, 3,250 people with a learning disability were still stuck in similar institutions. This was shocking enough, but what we have heard today about the actual circumstances of these individuals is profoundly worrying.

“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.”

Steve Sollars, father of Sam, who was a resident at the former Winterboune View hospital in Bristol, which was closed after abuse was uncovered by a Panorama documentary in May 2011, added: “It is devastating to hear that this is still happening. My son… 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.”

Personalised support

Steve Scown, chief executive of service provider Dimensions, added: “It is so very important for people with learning disabilities to be supported in a personalised way that reduces any interventions including medication and restraints. In my opinion, this data shows that these practices are still too often used and relied upon.

“There are ways in which support providers can and do reduce such practices, like creating Behaviour Support plans to reduce and manage complex behaviours. The sector really does need to focus on ensuring these practices are reduced so that the lives of people with learning disabilities are enhanced. 

“To see that half of people with learning disabilities with a care plan do not have a discharge plan in place very much disappoints me. This is a crucial stage in the process for the person being supported and helps identify the next stage of their lives. 

“But it comes as no surprise that those supported further away from home are in more expensive packages of support. Yet again, this emphasises the fact that, along with the many social and personal reasons people need to be close to their local communities and have choice and control over their support, there are also reduced costs for doing this.”