Stopping the overmedication of people with learning disabilities

Dorset resident Jack has reduced his psychotropic medicines and is seeing the quality of his life improve.

Hs story is told by Jack’s Dad, Mark, and Vikki-Lee Dampier, Dimensions Operations Director in Dorset.

Vikki says:

“Until he moved into his own home a couple of years ago, Jack previously lived in three supported living homes. Each one didn’t meet his needs for various reasons – but mainly because Jack has very high levels of anxiety.

He needs a predictable environment, and living with others causes all sort of unpredictable situations that Jack find very difficult.

“His family, thankfully, are incredibly involved in his daily life. They’ve always been uncomfortable with the amount of medication that Jack is prescribed, having been told over the years that Jack was prescribed levels which weren’t clinically trialled – or were unlicensed at this level.

“In fact, there have been trials of reducing medication in the past that actually led to an increase…”

The medications increased over the years based on Jack’s distress levels. As Vikki says, “A crisis would result in an increase, and before it could be decreased again, there may be another crisis.”

Before STOMP [the NHS campaign supported by Dimensions which looks to stop the overuse of psychotropic medicines] came into existence, Jack’s family and GP were in talks about reductions – but the important elements of being able to reduce his medication weren’t at that point able to change.

“Jack was living in an environment that triggered his anxiety and distress daily. His needs weren’t fully understood. For example, Jack has incredibly sensitive hearing and his housemates could create noise. Because he lived with others, Jack couldn’t have control of his home.

His family, along with the rest of the circle of support, had trialled a reduction of medication previously – but it was unsuccessful because the environmental triggers and support weren’t as Jack needed them to be.

As Vikki explains: “When Jack moved into his own home, we (as a circle of support) wanted his support to change. We wanted Jack to have more choice and control over his daily decisions and his home – something that up until then hadn’t already been possible due to living with others.

Jack’s change in support led to him becoming happier and more settled. There was now time for quiet when he needed it; time to talk without any distractions; time for breathing exercises when he needed help to regulate; and time for Jack’s day to run exactly how he wanted it to. Mealtimes are when Jack wants them to be, or going out when he wants to, and not around other’s schedules.

This change of environment, with its positive benefits, led to his circle of support feeling confident to trial reductions in medication again.

Mark (Jack’s Dad) says:

“Lots of detailed planning went into this new trial. We knew we needed to be smart about when we made the reduction – it needed to be a time when there wasn’t going to be any exciting or worrying events for Jack.

“We therefore consulted with his psychiatrist which medication to reduce first…”

Jack was on a prescription of Clonidine, but in August 2022 it was reduced over a few months by 150mcg.

Mark continues, “We actually went back up a step in November 2022, as we found he wasn’t able to self-regulate. Instead of increasing to the previous dose, we increase by 50mcg – and that worked well for Jack. It was still a decrease of 100mcg per day.”

In March 2023, Jack’s dosage of Risperidone was decreased by 0.5mg per day. This, again, was successful, and Jack’s circle of support plan to reduce this further soon.

His medications had negative side effects listed; there was – and is still is – an increased risk to his health because of them. “But by reducing them,” says Vikki, “We are reducing the risk.

“Jack is also losing weight and is much more active.”

Lots of detailed planning went into this new trial. We knew we needed to be smart about when we made the reduction – it needed to be a time when there wasn’t going to be any exciting or worrying events for Jack.

Mark (Jack’s Dad)