Jack’s medication reduction story – a circle of support creating more choice and control

Below is Jack’s story – about a 25-year-old gentleman we support in Dorset who’s reduced his psychotropic medicines and is, as a result, seeing the quality of his life improve.

It’s told by Jack’s Dad, Mark, and Vikki-Lee Dampier, Dimensions Operations Director, 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.

“His family, thankfully, are incredibly involved in his daily life. They’ve always been uncomfortable with the amount of dosage of medications 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 medications prescribed…”

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 the 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.

“Jack, his family and his staff team lived day-to-day managing his triggers, which led to us at time over restricting him, or making assumptions about upcoming situations on his behalf, rather than involving him because the risk was deemed too high.”

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.

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.”

Important helpful reflections

Both Vikki and Mark have reflected on the medications reductions and share the below advice. They say:

Don’t just think about the goal of reducing medication. Think about what symptoms the medication is treating. What can you do holistically to treat those symptoms? For Jack, a total change in his environment and how he is supported enabled the medication changes.

Make sure that the full team supporting someone are all on board with any new approaches to support. The person we support, the manager, team and family (if involved) review support and make any changes together – this is key to ensure consistency for the person we support.

The overall picture. When considering reducing medications – look at the overall picture and plan very carefully. Place importance on considering the right time to do it. Is there something exciting coming up, for example? Are there events that might cause distress to the person we support? If so, plan to reduce that.

Keep reduction plans ‘live’. Although it might not be the time to reduce right now, there will come a time. With that in mind, keep talking about it as circle of support.

Involved the full circle of support in discussions and aim to do things slowly. Don’t be deflated if you need to go back a step in your plan – this is all about getting it right for the person at that time. It doesn’t mean that you can’t reduce again in the future.

And last, but certainly not least: closely monitor any changes in the person you support.