The Right Medication at the Right Time

16/01/2024

People with a learning disability, autism or both are more likely to be given medication (including psychotropic medication) than other people. ‘Psychotropic medication’ is medication which affect  behaviour, mood, thoughts, or perception.

Many individuals from the Learning Disability and Autism communities are given such medication when they do not have a diagnosed mental health condition. Sometimes these medications are given to individuals, including children and young people because of behaviours that challenge others and that others are struggling to understand.

People with learning disabilities, autism or both are significantly more likely to be given one of more of these medications and to stay on them longer.

Overmedication or using them for the wrong reason puts people at risk of

• weight gain
• Feeling tired or ‘drugged up’
• health problems
• even premature death (LeDer project – Learning from lives and deaths)

These medications can be right for some children and young people, however there are other ways of helping children and young people so that sometimes they need less medication or none at all. 

All behaviour is a form of communication and if a child or young person with a Learning Disability and / or Autism is behaving in a way that those around them find challenging, it is important that we try to understand why that behaviour is happening.  It could be for a number of reasons, for example;

• Pain or discomfort
• Boredom
• Emotional distress

If we understand what is triggering a behaviour, we might be able to provide support to improve the situation, currently too often medication is used instead of exploring how an individual’s quality of life can be improved.

NHS England are working with local systems to improve both;

• The decision making about prescribing medication for those with a Learning Disability and / or Autism and how medication use is monitored.
• Consideration of alternative responses to behaviours that challenge, which do not include medication.

This work is being done under the banner of STOMP/STAMP. STOMP stands for ‘Stopping the Over Medication of People with a Learning Disability and / or Autism and is an all-age programme.  It is supported by STAMP, which is Supporting Appropriate use of Medication in Paediatrics.

In Shropshire PACC provides parent carer representation on the STOMP/STAMP work group.  There are two subgroups which report to this work group. One is developing improved clinical pathways for the prescribing and monitoring of medication use.  This includes ensuring that those with a Learning Disability and / or Autism, who are taking psychotropic medication, receive regular health checks and that clinicians include individuals and their family in decision making relating to medication. The other subgroup, which is co-chaired by PACC, is focused on improving information provision about this issue, promoting an improved understanding of alternatives to medication use and supporting system/culture change in regard to the use of medication as a response to behaviour which challenges.

You can find out more about STOMP/STAMP on the NHS England Website.

https://www.england.nhs.uk/learning-disabilities/improving-health/stomp/

https://www.england.nhs.uk/learning-disabilities/improving-health/stamp/

Currently NHS England are asking for responses to a survey about the experience of those with a Learning Disability and / or Autism on being given medication for their mind.  Please provide your feedback if you are in this group, the survey is open until the 26^th February 2024.

https://www.engage.england.nhs.uk/survey/5711c69b/consultation/intro/

PACC will continue to share information about the STOMP/STAMP work being done locally.