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STOMP is prompting questions on care

In the second of four blogs to mark the launch of today’s drive by NHS England urging doctors and other healthcare professionals to sign up to a national pledge to Stop the Over Medication of People with a learning disability, autism or both (STOMP), a clinical psychologist explains how it is making a difference:

In the past, people with a learning disability, autism or both who presented with behaviours which challenged, were prescribed antipsychotic medication.

This may have reduced the challenging behaviour, probably because the person was too tired and sleepy to challenge, but it didn’t tell us anything about why a person may have behaved in this way.

We know that antipsychotic medication can have nasty side effects, and can be harmful when used for long periods of time. This medication may be helpful for someone who is experiencing psychosis, but is not helpful for someone with a learning disability who is just trying to tell you what they need.

We know that all behaviour happens for a reason and challenging behaviour is no different. I would much rather find out the reason why someone was challenging, and help make sure they get what they need, rather than just stop it with medication.

For example, if someone was shouting and stamping their feet, because they needed someone’s help and they couldn’t ask for it in any other way, then surely we should be finding out what they need, rather than trying to keep them quiet.

We use positive behavioural support (PBS) to find out the reasons why someone may be behaving in a particular way. We work closely with people with a learning disability, autism or both, their families, and carers to try to make sure the person has access to things that they need. We also teach people new skills, and new ways to tell us what they need.

The overall aim is to make sure people have a good quality of life, and access to things that are important to them.

PBS should be used before medication is considered. Many people are prescribed antipsychotic medication without a clear reason why – most likely because they were considered ‘challenging’.

STOMP is prompting us to question if medication is appropriate, and if it isn’t, then we should look to reduce it.

We need to work really closely with people with a learning disability, autism or both, and the people around them, when we do this. Some people have been on this medication for more than ten years so understandably they, and others around them, worry what life might be like without it. That’s why our PBS team works closely with anyone on a medication reduction programme. This way we can monitor the effect of medication reduction, and if any challenges arise, we can help understand them.

I have seen the positive impact STOMP has had on people’s lives. People who have been taking tablets for ten years of their life, no longer need them.

I love my job and feel passionate about listening to what people are telling us, and helping them get what they need and live their best life.

Jen Rhodes is a principal clinical psychologist working for Northumberland Tyne and Wear NHS Foundation Trust.

She has worked in the learning disability community treatment team in Sunderland for the past eight years.

Jen’s role involves working with people with a learning disability, autism or both, their families, and carers, to implement positive behavioural support.

She provides training and supervision for direct care staff, families, and other professionals, and is responsible for making sure the work of the team is high quality, and is doing the best for the people being served.