STOMP: What progress has been made with the overmedication of people with learning disabilities?

Almost a decade ago, the NHS launched a campaign to reduce psychotropic medication rates. The initiative, stopping overmedication of people with learning disabilities and autism (STOMP), went hand-in-hand with efforts to reduce the number of people in mental health hospitals.

Following several scandals, there have been long-standing concerns about the treatment of people with autism and learning disabilities in these hospitals amid fears they are routinely drugged, secluded and restrained.

Two years after the launch of STOMP, the NHS launched another campaign—this time focused on children and medication. Supporting treatment and appropriate medication in paediatrics (STAMP) would put psychotropic drug use among children under the microscope.

At the time of its launch, officials said STAMP would help ensure children with autism and learning disabilities “get medication for the right reason, in the right dose and for as short a time as possible”. So, how successful have the STOMP/STAMP initiatives been?

Real-life experiences of overmedication

Jane Davies says her autistic and learning disabled son was put on high levels of medication when he was looked after by a care company and experienced “significant abuse”. In the end, her 38-year-old son was being given the antipsychotic risperidone, the antidepressant sertraline, anti-anxiety medication lorazepam, and the anticonvulsant pregabalin as well as “medical drugs”.

Retired teacher Davies (not her real name), from South Wales, says her son developed “erratic” and “dangerous” behaviour after the abuse. Still, she and her university lecturer husband were kept in the dark. He ended up in a mental health hospital in 2019, without his parents’ knowledge, and Davies says he looked very unwell when she eventually saw him.

Against a social worker’s advice, the parents took him home after 12 weeks when he calmed down, but he was left with post-traumatic stress disorder symptoms as well as being passive, sleepy and inattentive. Her typically slender son became “large“ to the point of being distended; he had tremors, irritable bowel syndrome, a B12 deficiency, prostate issues and midsegment facial pain syndrome linked to headaches and sensitivity to touch. He also suffered random foot pain linked to stress and cramps.

She says a trip abroad brought home the extent of the psychotropic medications being used when a Greek doctor who saw her son was “appalled”.

“He couldn’t believe the cocktail or quantities, and that was when we took it on ourselves to reduce risperidone under the supervision (at a distance – Covid) from his psychiatrist,” she says.

Although her son needed very little, he was given vast quantities of lorazepam, and she could not stop the prescription. Davies insists she and her husband managed to get their son off risperidone before he moved to independent living, and all the drugs were reinstated with doses doubled. It eventually took a complaint to get the psychiatrist to set up a reduction programme.

Now her son is again off risperidone, and the lorazepam is “not much used“.  He is also on a programme of carefully monitored reductions in pregabalin. Davies views the way he was started on the drugs as a “form of abuse” and accuses carers of using the medication to manage his behaviour.

Impact of STOMP on people with learning disabilities

NHS England data shows that the proportion of patients with a learning disability prescribed antipsychotics fell from 15.7% in 2016/17, when STOMP started, to 13.9% in 2023/24. The prescribing rate for those without a learning disability is generally stable and now stands at 0.9%.

So the figures suggest that for the campaign, there has been a reduction of almost two percentage points in the use of antipsychotics for people with learning disabilities, or almost 12%.

Progress on antipsychotics could be viewed as significant. The antipsychotic clozapine has been dubbed Britain’s most dangerous prescription medication as it has been linked to 7000 deaths since 1990.

The STOMP/STAMP campaigns were prompted by concerns that the prescribing rate for antipsychotics for people with learning disabilities was 16 times higher, and for those with autism, seven times higher, than the general population.

However, the latest figures for 2023/24 show that prescribing rates remain more than 15 times higher than the general population.

Overmedication of antidepressants

When it comes to antidepressants, STOMP/STAMP has had no impact since 2020/2021. In fact, the proportion of people with a learning disability prescribed antidepressants has risen from 20.8% in 2020/21 to 22.1% in 2023/24.

By comparison, the proportion of people without a learning disability treated with antidepressants was 10.9% in 2023/24.

The NHS has not produced up-to-date figures for the proportion of people with autism on antipsychotics. But figures from previous years have shown a massive difference between those with autism who also have a learning disability on antipsychotics compared to those only with autism. For example, in 2021/22, the proportion of patients with autism who also had a learning disability prescribed antipsychotics was 20.4%, compared to just 3.7% for those without a learning disability.

Also, efforts to reduce the use of antipsychotics for people with dementia have proved far more successful than for those with a learning disability. Between 2008 and 2011, there was a reduction of 51.8% for people with dementia amid similar concerns around overmedication to those that prompted the STOMP campaign.

Sleep medication also still shows a massive difference in prescribing rates. In 2023/24, up to 12.8% of people with a learning disability under 25 were on the sleep drug melatonin. This is more than 18 times higher than the 7% of those without a learning disability in the same age group on melatonin.

STOMP and behaviours that challenge

In a statement, Jacqui Shurlock, chief executive of the Challenging Behaviour Foundation, said such high rates of antipsychotic and antidepressant use nearly a decade after the launch of STOMP were “unacceptable”.

Shurlock, whose charity focuses on the needs of children and adults with severe learning disabilities, added: “Families that we support have told us that medication is too often the first resort, not the last resort and that they feel powerless to challenge the decision to put their relative on medication even when they can see the negative side effects it is having.”

She said the medications are often used in response to “behaviours described as challenging” and as an alternative to putting the proper support in place, rather than because the person has a mental health condition. Shurlock said better community services need to be available to end the over-reliance on medication.

A recent study found that a high proportion of adults with learning disabilities living in community homes and supported living accommodations in the UK are still receiving psychotropic medicines, often off-licence, for behaviours that challenge in the absence of a severe mental illness.

The study, published in Research in Development Disabilities, found that the most commonly prescribed psychotropics among adults with learning disabilities were antipsychotics (47%), followed by antidepressants (23%), anti-epileptics (13%) and benzodiazepines (7%).

NHS launching new standard of practice

An NHS spokesperson said they were aware that antidepressant prescriptions have been on the rise in the general population, which is why reducing this is now a priority area in its medication strategy.

They added that while the NHS Digital dataset remains the largest available information source linked to prescribing for people with a learning disability that can be accessed, the following caveats need to be considered when interpreting the data. Firstly, the data covers 55% of available GP practices in England. It is not representative at a national level.

Secondly, the data indicates the prevalence of prescribing rates. It does not show any shifting patterns related to dosage burden. Multiple academic papers have shown a significant impact in dosage reduction and quality of life improvements for people with a learning disability.

They say that STOMP and STAMP are not anti-medication; instead, they support the judicious use of medication linked with alternative non-medication interventions. This should support the emphasis on the “lowest dose for the shortest time” principle. The work’s outcome should focus on quality of life improvement and a reduction in health inequalities endured by people with a learning disability.

“We remain committed to reducing inequalities through better psychotropic medication prescribing, which is why we’re developing a new standard of practice,” they added.

“We know that health outcomes for people with a learning disability or autism are often worse than those of broader groups, with historically high rates of antipsychotic and antidepressant prescriptions, which is why we’re pleased that the campaigns have supported the right medication to be prescribed for people according to NICE guidelines.”

Over the lifespan of STOMP, the programme has delivered a range of initiatives including:

• Launching a healthcare and social care pledge – signed by all NHS mental health trusts and hundreds of independent and social care organisations
• Production of a range of resources to raise awareness and understanding
• Production of educational resources to develop the workforce across primary, secondary and social care staff. Over 34,000 modules have been completed in the last two years.