Stopping over medication of people with a learning disability, autism or both (STOMP)
STOMP stands for stopping over medication of people with a learning disability, autism or both with psychotropic medicines. It is a national project involving many different organisations which are helping to stop the over use of these medicines. STOMP is about helping people to stay well and have a good quality of life.
Psychotropic medicines affect how the brain works and include medicines for psychosis, depression, anxiety, sleep problems and epilepsy. Sometimes they are also given to people because their behaviour is seen as challenging.
People with a learning disability, autism or both are more likely to be given these medicines than other people.
These medicines are right for some people. They can help people stay safe and well. Sometimes there are other ways of helping people so they need less medicine or none at all.
It is not safe to change the dose of these medicines or stop taking them without help from a doctor.
Public Health England says that every day about 30,000 to 35,000 adults with a learning disability are taking psychotropic medicines, when they do not have the health conditions the medicines are for. Children and young people are also prescribed them.
Psychotropic medicines can cause problems if people take them for too long. Or take too high a dose. Or take them for the wrong reason. This can cause side effects like:
- putting on weight
- feeling tired or ‘drugged up’
- serious problems with physical health.
We worked with MiXit theatre group, people with a learning disability and families and carers to write an easy read leaflet about the project. This is available in different languages, including Urdu, Hindi, Punjabi, Gujarati, Bengali, Polish, Romanian and Somali.
We commissioned MiXit to do a new play about STOMP which is a great success everywhere it goes. They also made a short video about it.
NHS England also commissioned the Challenging Behaviour Foundation to produce some new resources for families.
One of the resources is a new online medication pathway for family carers. The other is a printed version of this. The pathway covers topics such as:
- What you need to find out before your relative starts taking medication
- What the alternatives are to medication
- How medication should be monitored
- What to do if you have concerns about your relative’s medication.
The printed medication information pack can be ordered from the CBF.
STOMP STAMP collaboration in Sunderland
This film describes a STOMP STAMP collaboration between a residential provider and the local trust in Sunderland. Using the STOMP STAMP principals led to a reduction in medication and improved quality of life for one of their services users.
STOMP STAMP day
On 29 July we held our first STOMP STAMP webinar day where we heard personal stories from people with a learning disability and autistic people. We also listened to presentations about improving care in primary and secondary care, LeDeR, children and young people, data, alternatives to medicine and the range of resources available to support health and social care professionals and people with a learning disability and/or autistic people and their families and carers.
The sessions were all recorded and you can listen to these by clicking on the links below.
- Welcome and core message slides – Carl Shaw and Dr Roger Banks
- Data – Natasha Chetwynd
- Improving care in primary care – Nigget Saleem
- Learning from lives and deaths of people with a learning disability (LeDeR) – Dr Emily Handley-Cole
- Children and young people – Mary Busk
- Alternatives to medication – Ruth and Jillian
- National Autistic Society (NAS) resource – Niki Daniel
- Multicultural STOMP resources – Dr Hassan Mahmood
- Reasonable adjustment flag – Nicola Easey
- Future work for children and young people – Mary Busk
- NHS Futures platform – Dave Gerrard and Janet Atukunda
- Next steps and Menti poll – Carl Shaw
STOMP pledge for health care providers
NHS England has worked with partners to produce a pledge for health care providers. This is about all health care providers improving the use of psychotropic medicine, offering non-drug therapies and making sure that people, families and staff are fully informed and involved.
Watch Dr Carter Singh, a GP in Nottinghamshire, describe how non-medical interventions can be used to support people with a learning disability. Dr Singh describes how he often sees people with acute or chronic presentations which are usually related to the person’s environment or frustration at being unable to communicate their wishes effectively and using a medical treatment to resolve a non-medical issue can be counterproductive or even harmful.
STOMP partner VODG (Voluntary Organisations Disability Group) was commissioned to produce a social care pledge that has been signed by more than 150 providers. Between them, they support more than 50,000 people with a learning disability, autism or both. VODG has produced other useful resources too, such as a booklet about supporting people when they visit the doctor, which includes an easy read section for the person.
The aims of STOMP are to:
- encourage people to have regular check-ups about their medicines
- make sure doctors and other health professionals involve people, families and support staff in decisions about medicines
- inform everyone about non-drug therapies and practical ways of supporting people so they are less likely to need as much medicine, if any.
Who is involved in STOMP?
STOMP was launched in 2016 by:
- NHS England
- The Royal College of Nursing
- The Royal College of Psychiatrists
- The Royal College of GPs
- The Royal Pharmaceutical Society
- The British Psychological Society.
These organisations pledged to work together to stop the over medication of people with a learning disability, autism or both.
Since then, the number of official STOMP partners has grown to include:
- British Association of Social Workers
- Royal College of Speech and Language Therapists
- The Learning Disability Professional Senate (NHS England, Care Quality Commission, Clinical Commissioning Groups, Challenging Behaviour Foundation, Department of Health and Health Education England
- British Association of Music Therapy
- Royal College of Occupational Therapists
- British Dietetics Association
- British Association of Art Therapy
- British Association of Dance Therapy, British Association of Drama Therapy and British Association of Art Therapy.
The children and young people’s team in the learning disability programme is working with the Royal College of Paediatricians and Child Health, and the British Academy of Childhood Disability, to deliver the STOMP message for children and young people.
There are links to resources for GPs, psychiatrists, psychologists, pharmacists, nurses and social care providers on the professional resources page.
- Your medicine might be right for you – you might need to take it to stay well.
- Don’t stop taking your medicine or change it without medical advice – this could be dangerous.
- To check if your medicine is right for you, speak to the person who prescribes your medicines, and ask for a medication review, which is a kind of check-up. You could ask your GP, psychiatrist, specialist doctor, pharmacist or nurse prescriber.
To find out more about how STOMP is making a difference to people’s lives read our case studies and blogs.
- Zoe has a happy life in the community thanks to the support she received
- Support received helped Graham with his diagnosis
- An easy read story about helping Charlie’s communication aids and his reduction in medication
- An easy read story about helping Eddie reduce his medication
- Make a choice, take a chance and life can change
- Peter is living the life he chooses thanks to STOMP
- Stopping over-medication: Ricky and Andy’s story
- Helping people get the right medicines in Bury
- An easy read story about helping Andrew to stop taking the wrong medicine.
- A blog about why STOMP matters by Anne Webster, clinical lead for the improving health and quality team in the NHS England learning disability programme.
- Carl Shaw, a learning disability adviser with NHS England, tells his story in a blog about working on the STOMP project. Or you can watch his video.
Children and young people
In December 2018 we launched STOMP-STAMP STAMP (Supporting Treatment and Appropriate Medication in Paediatrics) which looks at how we can make sure we are supporting children and young people with a learning disability, autism or both better.