Stopping over medication of people with a learning disability, autism or both (STOMP)

On 14 July 2015, reports were published highlighting widespread inappropriate use of antipsychotics and other medicines used to treat mental illness in people with learning disabilities.

Following these reports, NHS England led a ‘call to action’ which brought together representatives of professional and patients groups to make sure changes were made to these inappropriate practices. This led to a pledge to reduce over medication and the start of the STOMP project about stopping the over use of psychotropic medicines. The 3 year project runs until 2019.

It is estimated that every day about 35,000 people with learning disabilities or autism are prescribed psychotropic medicines when they do not have a diagnosed mental health condition, often to manage behaviour which is seen as challenging. This includes medicines used to treat psychosis, depression, anxiety and sleep disorders. It also includes epilepsy medication when it is only used for its calming effect, rather than to treat epilepsy.

STOMP is about making sure people get the right medicine if they need it and that people get all the help they need in other ways as well. It is about encouraging people to have regular medication reviews, supporting health professionals to involve people in decisions and showing how families and social care providers can be involved. STOMP also aims to improve awareness of non-drug therapies and practical ways of supporting people whose behaviour is seen as challenging.

The partners who signed the STOMP pledge in 2016 were:

  • NHS England
  • Royal College of Nursing
  • Royal College of Psychiatrists
  • Royal College of GPs
  • Royal Pharmaceutical Society
  • British Psychological Society

They are being joined by a growing number of organisations, such as

  • British Association of Social Workers
  • Royal College of Speech and Language Therapists RCSLT
  • The Learning Disability Professional Senate – made up of 16 professional bodies and other organisations
  • Voluntary Organisations Disability Group (VODG)

NHS England marked the first anniversary of the STOMP project on Tuesday 04 July with a review of the year and the launch of a play by the MiXIT theatre group in Newcastle. The group includes people with a learning disability, autism or both and shows the effects that over-medication can have on the health and wellbeing of individuals and their families.

Look at a summary of the year

Toolkit for GP prescribers

The toolkit – Stopping Over-Medication of People with a Learning Disability (STOMP) – has been co-produced by the Royal Colleges of Nursing, Psychiatrists and GPs, as well as the Royal Pharmaceutical Society, the British Psychological Society and NHS England.

The Royal College of Psychiatrists has also produce a Faculty Report with practice guidelines on psychotropic drug prescribing.

Toolkit for social care providers

The toolkit STOMP guidance for Social Care asks providers to pledge to reduce over medication. Over 100 providers have signed up so far, supporting more than 40,000 people. The Social Care Pledge is led by NHS England, VODG, The National Care Forum, Care England, ARC England, Learning Disability England and Skills for Care.

Advice for patients, families and carers

We recognise that you may be worried for yourself or someone you know about being prescribed these drugs so we have produced the following advice and information.

The medicine guidance is also available in easy read.

Help and advice

  • Firstly, it’s important that you don’t stop taking any medicines or change them without professional medical advice first because this could be dangerous.
  • If you are worried, either for yourself or someone you know, about the medicines being taken please speak to the person responsible for prescribing these medicines as soon as possible and ask for them to be reviewed. This will usually be a GP, psychiatrist, specialist doctors, pharmacist or nurse prescriber.
  • Please remember:
    • not all medicines that are prescribed to people with learning disabilities are medicines to treat mental illnesses, such as antipsychotics. If you have any concerns, please check and speak to the person responsible for prescribing them (GP, specialist doctor, pharmacist or nurse prescriber).
    • medicines used to treat mental illness can be very effective in treating some people with learning disabilities when used appropriately.

The British Psychological Society have produced a report on psychological therapies for people who have a learning disability to inform professionals, managers, commissioners, carers and service users as to what is available, what intervention may best help with, and what the likely outcomes are.

Work that Care Quality Commission (CQC) are doing in relation to stopping overmedication of people with learning disabilities, autism or both

Read the survey results: Survey of medication for detained patients with a learning disability

The CQC acknowledges the findings of high use of psychotropic medication in people with Learning Disabilities and supports the NHS England STOMP call for action. The CQC is undertaking a work programme to equip inspection teams with the awareness, knowledge and tools to assess whether good prescribing practice takes place in services that CQC regulates. This will range from checking clinical governance procedures associated with prescribing to checking practice standards. The Second Opinion Appointed Doctors who authorise/certify treatment plans for people with Learning Disabilities who are detained under the Mental Health Act in hospitals will also be offered, as part of their continuous professional development, updates on national and professional guidance on this topic.

Useful numbers to call

Challenging Behaviour Foundation

Registered charity which provides telephone and email support to families caring for individuals with severe learning disabilities and behaviour described as challenging. Free resources include information sheets on the use of medication and finding the causes of challenging behaviour.

National Autistic Society

Respond

Frequently Asked Questions

Q1: What are antipsychotic medicines and what are they prescribed for?

More information can be found on the Royal College of Psychiatrists’ website

Q2: Should I stop taking my medicines?

  • No, you should not stop taking any medicines that you have been prescribed without first speaking to the doctor, pharmacist or nurse who prescribed them. To stop taking medicines without taking advice first could be dangerous.

Q3: What should I do if I’m worried or want more information?

  • If you are worried or want to find out more information there are a number of things you can do.
  • Firstly, it’s important that you don’t stop taking any medicines or change them without professional medical advice first because this could be dangerous.
  • If you are worried, either for yourself or someone you know, about the medicines being taken please speak to the person responsible for prescribing these medicines as soon as possible and ask for them to be reviewed. This will usually be a GP, specialist doctor, pharmacist or nurse prescriber.
  • Please remember:
    • not all medicines that are prescribed to people with learning disabilities are medicines that are used to treat mental illnesses, such as antipsychotics. If you have any concerns, please check and speak to the person responsible for prescribing them (GP, specialist doctor, pharmacist or nurse prescriber).
    • medicines used to treat mental illness can be very effective in treating some people with learning disabilities when used appropriately.
  • Find out more about the organisations you can contact for help.

Q4: Are all people with a learning disability prescribed antipsychotic medicines or medicines used to treat mental illness?

  • Where the doctor has determined a real need for these medicines, and has discussed with the patient and/or their parent or carer both the risks and benefits, it may be entirely appropriate to use, for example, an antipsychotic medicine.

It’s important that the need for medicine is reviewed regularly.

Q5: Is my health at risk if I’m taking these medicines?

  • While all medicines have benefits, they also have side effects.

It’s important that the person prescribing that medicine discusses with the patient and/or their parent/carer the risks and benefits of any medication. These particular medicines can have serious side effects so it’s even more important to be sure they are needed, and that they are reviewed regularly.

Q6: What are the side effects?

  • These medicines can have serious side effects for many people who take them. The possible and likely side effects should have been explained to you/your family/carer before taking them. A careful assessment of the risks and benefits of taking these medicines needs to be discussed before they are prescribed for a patient and this is why it’s important that they are reviewed regularly and patients and carers are involved in decisions to prescribe and subsequent reviews.

Please discuss any concerns you have with your doctor, pharmacist or nurse who prescribes your medicines.