'Antipsychotics used on people with no mental illness diagnosis'

"'Chemical cosh' scandal: Thousands of patients with no history of mental illness needlessly given cocktail of antipsychotic drugs," says the Mail Online. The emotive words "needlessly" and "cocktail" are the Mail's imaginative inventions in its largely factually accurate report on a well-conducted and important piece of research.

The research in question looked at prescriptions of psychiatric drugs given to people with learning disabilities. It found – rather alarmingly and perhaps unexpectedly – that most people given antipsychotic drugs had never been diagnosed with a severe mental illness.

Antipsychotic drugs are usually used for conditions such as schizophrenia. They can help reduce hallucinations, ideas not based in reality, and extreme changes in mood. The story is in the news because of ongoing reports of the drugs' overuse in care homes to keep people's behaviour manageable – the so-called "chemical cosh".

In this study, researchers crunched a large amount of data from the medical records of adults with learning difficulties. As well as finding that 71% of people with learning disabilities who had been prescribed antipsychotics had no diagnosis of severe mental illness, the researchers found that almost half the people who had been prescribed antipsychotics had a history of challenging behaviour.

Should people with learning disabilities be treated this way? The answer is "perhaps" and "sometimes". The National Institute for Health and Care Excellence (NICE) says antipsychotics shouldn't be used except in certain circumstances – for example, if other psychological treatments have not helped within an agreed amount of time. 

Where did the story come from?

The study was done by researchers at University College London, and was funded by the Baily Thomas Charitable Fund and the UK National Institute for Health Research.

It was published in the peer-reviewed British Medical Journal (BMJ). It has been made available on an open-access basis, so this research paper is free to read online.

The Mail asserted that, "Doctors are needlessly doling out powerful anti-psychotic drugs", but the researchers said they did not know whether the drugs were being used inappropriately. The study produced genuinely concerning findings, but the colourful editorialising may cloud understanding of this important area of research.

The Guardian covered the study accurately, and reported how the prescription of such drugs in these groups had fallen from 1999 to 2013.

What kind of research was this?

This was a cohort study where researchers used diagnostic and prescription data collected by 571 UK general practices.

Cohort studies can show links between two factors. In this case, it showed people's diagnosis of mental illness and their chances of being prescribed an antipsychotic drug. But it can't show that the illness led to the drug being prescribed. 

What did the research involve?

The researchers analysed GP data to find out how often people with learning disabilities were diagnosed with mental illness or had challenging behaviour recorded in their medical records. They also analysed how often people with learning disabilities were prescribed psychotropic drugs (drugs that affect how the brain works).

There were 33,016 adults identified as having a learning disability. For each of them, the researchers looked at their records to see whether they had a record of a mental illness. Where a diagnosis of mental illness had been recorded, the researchers looked into which type of illness, whether their GP had recorded challenging behaviour, and whether they had been prescribed psychotropic drugs at any time.

The researchers followed people's records up to 2013 to see whether they were diagnosed with a mental illness, had been prescribed psychotropic drugs, or exhibited challenging behaviour. They looked at diagnoses of severe mental illness such as schizophrenia and bipolar disorder, as well as other types of mental illness, including depression, dementia and anxiety.

Challenging behaviour was defined as including aggression and self-harm, agitation, disruptive or destructive actions, withdrawn behaviour, and sexually inappropriate behaviour. The psychotropic drugs identified in this study included antidepressants, anti-anxiety drugs, mood stabilisers and antipsychotics.

Antipsychotics were studied in more depth, because they can have more serious side effects. They can cause movement disorders such as twitching and restlessness, sedation and weight gain, and lead to diabetes. Because of these side effects, antipsychotic drugs are usually only used to treat severe mental illnesses such as schizophrenia or bipolar disorder.

Finally, the researchers used statistical analysis to look at the relationship between people's mental health, challenging behaviour and whether they were prescribed psychotropic drugs, especially antipsychotic drugs. 

What were the basic results?

Of the more than 33,000 people studied, 9,135 people (28%) had been prescribed antipsychotic drugs by the end of the study. But of these people, 71% did not have any record of severe mental illness.

Many of the people in the study (36%) had a record of challenging behaviour. Almost half these people (47%) had been prescribed antipsychotic drugs, but only 12% of people with challenging behaviour had been diagnosed with severe mental illness.

The researchers calculated that people with challenging behaviour were more than twice as likely to be given a prescription of antipsychotic drugs compared with people without a record of challenging behaviour.

Over the course of the study, the use of antipsychotic drugs declined by about 4% a year. The diagnosis of new cases of severe mental illness also declined, by about 5% a year. 

How did the researchers interpret the results?

The researchers said their results called into question why so many people without serious mental illness are being prescribed antipsychotic drugs. "We need to understand why most antipsychotics are prescribed to people without a record of severe mental illness, and why so many people with challenging behaviour receive antipsychotics," they said.

They added: "We infer that ... antipsychotics are used to manage behaviour, but this might not be the case." They also said if antipsychotics were being used to manage behaviour, "investment in a skilled multidisciplinary team of professionals who can provide alternative evidence-based management strategies for challenging behaviour" would be needed.

The researchers also speculated that the drop in the number of prescriptions for antipsychotics might be the result of concerns raised about their use during the past 15 years. 

Conclusion

This study presents a worrying impression of how people with learning disabilities are medically treated. The fact that more than a quarter of people with learning disabilities were given antipsychotics when the vast majority of them did not have a serious mental illness is hard to explain.

The study had several strengths. It is very large, and because it was based on GP records, it should represent a good cross-section of UK society. Computerised GP records in the UK have a good reputation for being reliable. However, it is always possible that some diagnoses or prescriptions were wrongly coded in the system, which would make the data less reliable.

The researchers' definition of challenging behaviour and the way they collected records of challenging behaviour was new, which means it has not been tested in other studies.

Some GPs might not include diagnoses of severe mental illness – for example, they might just record the symptoms the people reported instead of the diagnosis. This would lead to fewer diagnoses of severe mental illness than you would expect and could skew the results.

Charities and campaign groups have long warned that elderly people – such as those with dementia – should not be treated with antipsychotic drugs unless they have a severe mental illness. This study showed that older people were also more likely to be prescribed an antipsychotic.

This study can't tell us why people with learning disabilities were prescribed antipsychotic drugs when they didn't have a severe mental illness. The authors suggest the drugs are being used to manage challenging behaviour.

While this seems plausible, we can't tell for sure from this study. Importantly, we don't know what doses of medication were used and whether they were prescribed at a sedating level – the so-called "chemical cosh" depicted in the media.

The study also does not report how regularly the medications were used and whether or not the person with learning disability found them beneficial, which is, of course, the usual goal of prescribing medication. Why older people are more likely to receive antipsychotic drugs remains unexplained, even after taking account older people with dementia.

The study raises questions about the care of people with learning disabilities in society. Challenging behaviour is a rather vague and inclusive term, and can be used to encompass behaviour ranging from serious violence to making a lot of noise, or simply disrupting the routine of a care home. As the researchers note, simply cracking down on the inappropriate use of antipsychotic drugs may not solve the problem.

For more information, read our advice on caring for someone who behaves in a difficult way because of their condition, or call the Carers Direct helpline on 0300 123 1053.