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Patients given anti-psychotic drugs

Anti-psychotic medication is given to more than two thirds of inpatients with learning disabilities in specialist units, a census has shown.

It also found that over half (56.6%) of the patients had experienced an "incident" during the three months preceding the census date such as self-harm, an accident, physical assault on the patient, hands-on restraint or seclusion.

The findings are the result of further analysis of the 2013 Learning Disability Census commissioned in response to events at Winterbourne View Hospital and have been published by the Health and Social Care Information Centre (HSCIC).

They are based on survey responses received from 104 (58 NHS and 46 private) provider organisations in England on behalf of 3,250 service users in September last year.

The patient group includes people with learning disabilities, autistic spectrum disorder and/or behaviour that challenges.

The census shows that 68.3% (2,220) of the inpatients had been given anti-psychotic medication in the 28 days leading up to census day.

Of these, 93% (2,064) had been given the medication on a regular basis.

Proportionally more people belonging to black and minority ethnic groups had been given these drugs on a regular basis than in white ethnic groups - 72.6% (284 out of 391) compared with 61.8% (1682 out of 2,720).

Of the 56.6% (1,841) of patients who had experienced an "incident", more women experienced every type of incident than men.

The HSCIC also said there appears to be an association between hands-on restraint and the administration of anti-psychotic medication - 40% (889) of the 2,220 given these drugs had experienced at least one instance of hands-on restraint compared to 21.5% (221) of the 1,030 who were not given any of this medication.

Some 78% (2,536) of service users were subject to the Mental Health Act 1983 on census day, compared with 22% (714) who were classified as informal patients.

Of those subject to the Act, 99.5% (2,524) were subject to "longer term hospital orders" - a duration greater than 72 hours.

The census found 46.4% (1,508) of service users were in receipt of an active care plan without a discharge plan in place.

Around 4.7% (152) were experiencing a delayed transfer of care.

Care of 86% (2,795) cost between an estimated £1,500 and £4,499 per week, with 37.9% (1,231) being in the £2,500-£3,499 range.

For 11.4% (369), care provision was indicated to cost over £4,500 per week per person.

Some 20% (112) of service users staying in wards more than 100km from home were in high cost placements (over £4,500 per week), while 34% (208) staying within 10km from home were in placements costing under £2,500 per week.

Data was collected via the HSCIC on behalf of the Department of Health, the Care Quality Commission, Public Health England and NHS England.

The background to the census includes the BBC Panorama programme in May 2011 which reported the mistreatment and assault of adults with learning disabilities and autistic spectrum disorder at Winterbourne View Hospital, the HSCIC said.

Kingsley Manning, chair of the HSCIC, said: "The Learning Disabilities Census, and this further analysis, is an important contribution to understanding how episodes such as those seen at Winterbourne View Hospital can be avoided in the future.

"This further analysis of the census data will aid understanding of the experience of inpatients with learning disabilities nationally, and is an important benchmark.

"It is crucial that service providers have accurate data about complex issues such as these, to help them to develop their understanding and improve their services for patients. Providing this sort of data is a key role for the HSCIC."

The HSCIC said the census will be re-run in September 2014 in order to identify change and particularly, where appropriate, reductions in inpatient care in favour of more suitable community care and support options.

The figure for regular use of anti-psychotic medication is higher than reported in studies cited in a paper published in 2001, the HSCIC said.

That paper, from the Journal of Medical Ethics, indicated that 22%-45% of people with a learning disability in hospital populations were taking such medication.

Jan Tregelles, chief executive of Mencap, and Vivien Cooper, chief executive of The Challenging Behaviour Foundation, described the findings in the HSCIC report as "profoundly worrying" and "utterly disgraceful".

In a joint response, they said: "In December, we were told that, two and a 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."

A breakdown of length of stay figures in the report shows that 24 patients were listed as 20 years or more, while 44 patients were listed as staying 15 years to up to 20 years.

The length of stay for 130 of the patients was reported as 10 years to up to 15 years, while 374 patients were reported to have stayed five to 10 years.

Most patients - 892 - were reported as having a length of stay of up to six months.

Simon Shaw, policy and parliamentary manager at the National Autistic Society (NAS), expressed concern about the number of services users who were found to have an active care plan with no discharge plan in place.

"This is concerning on two counts. Firstly, 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.

"Good commissioning by local authorities and health bodies ensuring that the individual and their needs are at the heart of any care package will go a long way to preventing the kind of abuse that we saw at Winterbourne View."

Care and Support Minister, Norman Lamb, described the findings of the census as "intolerable".

"People with learning disabilities or autism deserve the best possible care, so the widespread use of antipsychotics and restrictive practices is extremely concerning. This is intolerable, and needs to change.

"I challenge everyone involved with the care of people with learning disabilities to use this report to address poor practice and make sure that people are taken care of in the right setting in their own communities as far as possible.

"I want to see progress on these issues when the next set of data is published later this year," he said.

Steve Sollars' 24-year-old son Sam, who has a learning disability and autism, was at Winterboune View.

Mr Sollars, from Bristol, said: "It is devastating to hear that this is still happening. My son, Sam, who was at Winterboune View, was restrained 45 times in a six- month period.

"We will never know how much more he was subjected to 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."


From Belfast Telegraph