STOMP and STAMP survey on how people with a learning disability and autism are given medication for their mind

Overview

This video shows Carl Shaw talking about why we are doing this survey, or you can read the information below.

Hello, My name is Carl Shaw, I am a person with a mild learning disability and am employed by NHS England as a learning disability and autism adviser. I and my work colleagues in the STOMP and STAMP team are working with Learning Disability England and the Challenging Behaviour foundation.

STOMP stands for Stop Over Medicating autistic people and people with a learning disability and it is for children, young people and adults.

STAMP stands for Supporting Treating Appropriate Medication in Paediatrics and is for children and young people.

We are contacting you because we would like to ask autistic people, people with a learning disability, families and carers about psychotropic medication. Psychotropic medication is any medication that affects the mind for example, medication used to treat psychosis, depression, anxiety, sleep problems, ADHD and epilepsy.

We know that health professionals give people these medications when people do not have a diagnosed mental health condition and it may be used to manage what some people describe as challenging behaviour.

If medication is not prescribed for the right reason, then we call this inappropriate medication. This needs to be regularly reviewed and taken away as soon as it is can be stopped. When medication is used for the wrong reasons, it can have side effects like putting on weight and becoming very unwell and this is what the STOMP and STAMP team, Learning Disability England and Challenging Behaviour Foundation want to stop happening. We would like to get your views to help us with this work.

We have made a survey that is here.

We will not ask you any information about who you are (like your name and address) and you can ask someone who you trust to help you if you need help. You do not have to answer any questions that you do not want to.

We will use the information you tell us to make plans about what we need to do to change things for the better. Thank you for taking the time to read this and answer our questions.

Any information we collect will be used to help us understand how to make services better for people but we will never share personal data including your name, address or contact details.

But if you would like to be updated about our work you can ask to join engagement teams mailing list to be updated on the work we do in the learning disability programme at NHS England.

To learn more about the STOMP and STAMP programme, see our leaflet.

If you are filling this out for someone else, please capture the opinions of the person you are supporting to the best of your ability.