Stopping over medication of people with a learning disability and autistic people (STOMP) and supporting treatment and appropriate medication in paediatrics (STAMP)

Stopping over medication of people with a learning disability and autistic people (STOMP) is a national NHS England work programme to stop the inappropriate prescribing of psychotropic medications, an identified priority in the NHS Long Term Plan.

Alongside this, the national supporting treatment and appropriate medication in paediatrics (STAMP) programme aims to make sure that autistic children and young people and those with a learning disability get medication for the right reason, in the right dose and for as short a time as possible.

These programmes work particularly closely with people with lived experience and families and carers organisations as well as a range of health and social care professional bodies.

People with a learning disability are thought to be 16 times more likely and autistic people 7 times more likely to be prescribed an antipsychotic than the general population. It is this disparity that led to the creation of STOMP and STAMP as an NHS Long Term Plan commitment.

People should only be given psychotropic medication for the right reasons, in the lowest dose, for the shortest time.

STOMP and STAMP are not anti-medication. Instead, we want to help people stay well and have a good quality of life through the right use, review and optimisation of medication. This means thinking about alternative forms of treatment before prescribing medication, and having clearly defined circumstances in which the use of psychotropic medication is appropriate.

STOMP and STAMP are the responsibility of all professionals in primary care, secondary care, educational settings and social care. They promote information sharing and collaboration across sectors of care to minimise all forms of inappropriate prescribing.

Use of psychotropic medications

Psychotropic medications include antipsychotics, antidepressants, anxiolytics (benzodiazepines), anti-seizure medication (antiepileptics), sedatives (including hypnotics) and stimulants. They affect the working of the brain and impact on a person’s mood, thoughts, perceptions and behaviour.

However, the side effects of these medications can impact on a person’s quality of life. These include (but are not limited to):

  • sedation
  • weight gain
  • dyslipidaemia
  • increased diabetic risk
  • movement disorder such as extra-pyramidal side effects (EPSE)
  • hormonal change such as hyperprolactinaemia
  • ECT changes
  • sexual dysfunction.

Psychotropic medications are licensed to treat a range of serious mental illnesses including psychosis, mood-related conditions such as depression and bipolar disease, all forms of anxiety, attention deficit hyperactivity disorder, insomnia and all forms of epilepsy. Each of these conditions has National Institute for Health and Care Excellence (NICE) guidance on treatment pathways. While this guidance is applicable to people with a learning disability and autistic people who have a confirmed diagnosis of serious mental illness, NICE has developed additional guidance, Mental health problems in people with learning disabilities [NG54], to ensure people with a learning disability are assessed and managed in line with their individual needs.

Certain psychotropic medications can be prescribed for behaviour that is thought to be challenging. This is not a diagnosis, more a social construct that may identify a person’s communication needs and the impact of environmental triggers. This is an unlicensed indication and when medication is used for behaviour thought to be challenging, it should be initiated, monitored, reviewed and stopped in line with NICE guidance. Specialist oversight is required, particularly for initiation.

NICE guideline Challenging behaviour and learning disabilities [NG11] identifies two situations in which the use of antipsychotics – in combination with psychological measures, never as monotherapy – may support a person with behaviour thought to be challenging:

  • if psychological interventions do not achieve change
  • if the risk to the person or others is severe.

The medication should be initiated by a specialist and they should:

  • identify and measure the targeted behaviours that are thought to be challenging
  • use the minimum effective dose for the shortest possible time
  • regularly review the benefit of treatment and impact of side effects
  • record the rationale for medication and the likely length of treatment
  • write a strategy for reviewing and stopping the medication that must be shared with non-specialist colleagues.

Regular medication review

The impact of any side effects of psychotropic medication should be regularly weighed against the potential benefits of treatment.

To ensure continued prescribing remains appropriate, people should receive regular, person-centred, holistic and structured medication reviews from professionals who understand people with a learning disability and autistic people. The review should focus on physical, mental and behavioural wellbeing, with an emphasis on reducing health inequalities and promoting health and quality of life. It is important that people’s experience and feedback is captured when they attend a review.

From the age of 14, people with a learning disability are entitled to an annual health check, and this includes a holistic, structured medication review.

It may be helpful as part of any review to consider and offer alternatives to medication where appropriate, such as sleep hygiene or other non-pharmacological support.

How should organisations deliver STOMP and STAMP

All health and social care organisations are expected to:

  • explore alternatives to medication
  • ensure all staff have an understanding of psychotropic medication such as why it is used and the likely side effects
  • ensure people with a learning disability and autistic people of any age and their circle of support are fully informed about their medication and its potential side effects, and involved in decisions about their care. Medication information should be available in a format that is accessible to the person; for example, easy read, video or plain English
  • ensure that reasonable adjustments are identified, recorded and implemented in advance of any appointments and that people have been contacted to ensure adjustments are up to date or they have an advocate (who could be a family member or carer) to speak on their behalf if necessary
  • ensure all people are able to speak up if they have a concern about receiving inappropriate medication
  • maintain accurate records about a person’s health, wellbeing and behaviour
  • ensure that medication, if needed, is started, reviewed and monitored in line with the relevant NICE guidance: what it is intended for when started; how often it will be reviewed and by whom; a plan to safely reduce or remove the medication if no longer thought to be beneficial; alternatives to medication used before and in conjunction with medication
  • work in partnership with people with a learning disability and autistic people, their families, care teams, healthcare professionals, commissioners and others to stop over medication
  • inform people about non-drug therapies and practical ways of support so they only have medication for the right reasons
  • support autistic people and people with a learning disability to have regular medication reviews, and support people with a learning disability to access their annual health check. This should all be done in a holistic and person centred way
  • support doctors and other healthcare professionals to fully involve people, families and support staff in decisions about medication
  • specialist teams to work in partnership with primary care colleagues to educate, advise and support their delivery of STOMP and STAMP

If you are a health or social care professional, you can access local prescribing data, where available, using the interactive tool on the Health and Care of People with Learning Disabilities, Experimental Statistics 2022 to 2023 – NHS England Digital platform (this does not cover all areas of England), and you should look on your professional body’s website for its STOMP and STAMP commitments and guidance.

Professionals in all health and social care settings can join the STOMP and STAMP FutureNHS collaboration site to share best practice, participate in discussions and engage with other care professionals. This is a good way to stay connected with NHS England and other organisations, access resources and collaborate to improve delivery of STOMP and STAMP.

Tell others what you are doing using social media and the X hashtag #StompStamp.

For more information please contact england.wesupport.stomp@nhs.net

Resources

For all professionals

For families and carers

  • STOMP Programme core message leaflet (available in easy read and in 9 languages): created in collaboration with MIXIT Theatre group, this leaflet explains what STOMP is and goes through the best ways to support people with their medication.
  • No medication…? Why…?: this leaflet explains why someone with a learning disability or autistic people may not be prescribed mental health medication to change behaviours that may be challenging.
  • The Challenging Behaviour Foundation Medication Pathway: this pathway covers what families and carers should find out before their relative starts taking medication. It explores the alternatives to medication, how medication should be monitored and what a family member or carer should do if they have concerns about their relative’s medication.
  • STOMP and STAMP family guide: this guide for families whose loved one has been prescribed medication recommends the questions to ask and where to find more support.

For autistic people

For people with a learning disability

For social care organisations