Learning Disability Today
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It has been almost a decade since the NHS launched the stopping overmedication of people with learning disabilities and autism (STOMP) campaign.
When launched, the programme – alongside the supporting treatment and appropriate medication in paediatrics (STAMP) campaign, which was launched two years later – aimed to ensure that people with learning disabilities should only be given psychotropic medication for the right reasons, in the lowest dose, for the shortest time. This was to combat historically high levels of people with learning disabilities being given antipsychotics for long periods of time.
There has been progress made towards this goal over the years. Figures from NHS England show that the number of people with learning disabilities prescribed antipsychotics stood at 13.9% in 2023/4, down from 15.7% in 2016/17 when STOMP started – a reduction of about 12%. But, when compared to the prescribing rate for people without learning disabilities, which is 0.9%, it is clear there is more to be done to reduce the inequality.
“Since it was introduced, the STOMP campaign has made a positive impact,” says Sarah Swindells, health and wellbeing Lead at Dimensions. “It has raised awareness, improved understanding of psychotropic medication, and supported providers to review prescribing practices. However, the numbers show there is still a long way to go before overmedication is no longer a widespread issue.
“Medication should never be a first response to behaviours of distress. We know there are better, safer, and more empowering approaches available – and our role is to make sure people get the right support at the right time, not more medication than they need.”
Changing the culture of overmedication
The adverse impacts of overmedication on people with learning disabilities and autism are well-documented. As Sam Sly, director of I’m Out of Here Ltd and a life plan facilitator and trainer, notes: “The people that I work with and do care and treatment reviews for, a majority have a diagnosis of being autistic now. They will have either had a history of being put on medication for a mental health disorder, then finding out that they’ve got autism, but finding people being not able to or want to backtrack out of the medication.
“Medication has different effects on autistic people. They have far more side effects, and it doesn’t often work for them. However, it’s still seen as the frontline treatment when someone’s in the hospital.
“Every now and again, you get a responsible clinician who sees a person being in hospital as a way of taking them off everything and seeing what’s going on. But often the culture hasn’t changed, and immediately when somebody goes into the hospital, if they’re in crisis, they get medicated.”
Best practice available
There are examples of good practice involving STOMP out there. For instance, at Tees, Esk and Wear Valley NHS Trust, a model is in place that supports GPs and primary care pharmacists in developing their knowledge and skills to conduct learning disability overmedication reviews within primary care.
This was devised by advanced nurse Sue Sargeant and primary care liaison nurse Claire Donnelly, who also operate the scheme. “We work alongside pharmacists and GPs to upskill them,” explains Sue. “The reason why our work has been so important is because people often perceive that when someone’s had a difficult event in a prescribed medication, it’s that medication that’s got them better, and therefore there’s a reticence or lack of confidence to review and reduce that medication in case the person becomes unwell again or has a problem.”
However, for Sue and Claire, it isn’t just about overmedication; it is the bigger picture of the person, which is why they conduct holistic reviews. “We also look at the alternatives to medication, and make sure we’re offering those,” says Claire. “For instance, with behaviour that challenges, we’ve got positive behavioural support, and we make sure that that’s in place and relevant and working.
“It is also about psychology, because often it has never been offered to the person when they’re coming in with depression or low mood. It’s not about looking at why we’re prescribing and why they’ve got that low mood, it’s about how we can support the individual through alternative therapies.”
Good quality holistic medication reviews
Sue adds that STOMP isn’t about stopping medication. “For some people, medication is right, and there is a clinical need for it,” she says. “It’s about making sure that people are on the lowest dose for the shortest period of time, and that they do have good quality holistic medication reviews throughout that period.
“It’s making sure that people who are on medication are on the right medication for the right amount of time. Then once it serves its purpose, there’s a pathway there to take them off the medication and onto alternative therapies.
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“Claire and I support that process, support pharmacists to reduce that medication and then to put any monitoring in place to ensure that it’s safe. We don’t want to place anybody at risk as we’re reducing medication. It’s a safe process so we want to be sure people can cope with any changes that happen as a result of coming off medication.”
Claire adds that it is also about ensuring that alternatives are already in place. “And it’s about ensuring that the staff have the confidence to use the tools that they’ve already got, and then we can start reducing that medication,” she adds. “It’s about making that patient safer, reducing the risk of any increased behaviours that challenge or any low moods or repeated deterioration in mental health.
“It’s about that holistic picture of what the quality of life is like now, before any medication reductions done. And that’s where we put that education and give the pharmacists and GPs the skills to do that and to take these things into consideration and look at things holistically.”
Anne-Marie’s story
This integrated approach has produced positive results. Teesside patient Anne-Marie finally feels she can “be me again” after taking part in the STOMP project.
The 36-year-old from Stockton underwent a medication review in 2024 and is now feeling brighter and much more confident.
“The review changed my life,” she says. “The help I got made me feel happier in myself and feel better about the future. I am very surprised by how different it has made me feel. When I wake up, I feel like me again. I feel much more alive now.”
Anne Marie spent a “couple of years” on strong medication, which she describes as “making life dull and boring”. Now that she is taking a lower dosage, life is changing for the better.
“I definitely feel more confident now,” she said. “I can do more stuff, like exercise outside and go for little walks. I can just be me for the first time in years.
“I really can feel the changes since the dose was lowered. I feel happier, I can walk into the world and can look forward to my future. I’d 100% recommend STOMP to other people.
“It has made such a difference to me, and I hope it will help others. Life seemed dull and boring before the medication changes, now the world has become bright again.”
Future of STOMP and overmedication
That shows what can be done. Dimensions says the principles of STOMP remain vital – improving quality of life, involving people in decisions about their health, and reducing inappropriate medication. “With renewed focus and leadership, STOMP could go even further in transforming care and ensuring people live healthier, more fulfilling lives,” says Sarah.
“Politicians and health leaders could do far more to promote STOMP, to ensure doctors, social care providers, and families are all supported and encouraged to use alternatives before turning to medication,” she says.
Sam agrees that more should be done. She perceives that, with reorganisations within the NHS, some of the impetus for STOMP that came from leaders has dissipated in recent years. “Sometimes you need that top-down emphasis to help keep the focus on it,” she says.
Sue adds that education about overmedication is crucial – and she and Claire are looking to spread the word of their model to other trusts around the country. “It is about spreading the word about what can be done,” she says. “STOMP is everyone’s business.”
