Psychotropic medicines in people with learning disabilities

Psychotropic medicines in people with learning disabilities who show symptoms of distress*

( #jargonbuster – psychotropic medicines = The phrase “psychotropic drugs” is a technical term for psychiatric medicines that alter chemical levels in the brain which impact mood and behaviour.)

p7amgebk.jpg large                                                            #Oliverscampaign

In my tweets & posts I have suggested that patients themselves need to take more responsibility for the medicines they are prescribed.

But what about vulnerable groups who may depend on decisions being made for them, and in their best interests?

Key points:


  • Most of the prescribing in this area is ‘off label’ ( #jargonbuster – that’s medicines prescribed for something that isn’t listed as an ‘indication’ for that medicine ).
  • This prescribing can include multiple anti-psychotic medicines, often medicines in the same class. There is a limited evidence base for this type of prescribing.
  • Psychotropic medicines in people with learning disabilities who show symptoms of distress* are not always prescribed by a specialist in this area.
  • Diagnostic overshadowing may lead to inappropriate prescribing. This is the attribution of a person’s symptoms to their mental condition, when such symptoms actually suggest a comorbid condition.

Actions to take:

  • A Holistic assessment including taking all measures possible to understand why the person may be distressed, a taking actions to alleviate this, based around the person.*

Before prescribing it’s important to understand all triggers and environmental factors. Reasons for behaviour now and what has happened in the past, including what works well and what acts as triggers*.

After exploring ALL options, if medicine is thought to be the answer:

  • Ask about allergies, sensitivities and adverse reactions to medication. Check the documentation on this and ensure it’s recorded accurately (e.g. if the person has reacted to a drug is the nature of the reaction recorded in full, and has it been shared with all involved in the person’s care).
  • Take into account views of family and carers.
  • Take into account any advance decisions and support plans.
  • Take care to avoid diagnostic overshadowing.
  • Ensure there is Specialist initiation and review of prescribing.
  • Ensure Multi-Disciplinary team involvement & inter-organisational involvement.
  • Act in accordance with the Mental Capacity Act [MCA] , where capacity to make a specific decision is lacking. (NB: Capacity assessments must be time and decision specific).
  • Best interests decisions must involve all parties, be fully documented & regularly reviewed.
  • Where appropriate, a tiered approach to prescribing – ‘start low, go slow’.
  • Ensure involvement of Second Opinion Appointed Doctors (SOADs#) to provide a statutory safeguard where consent is an issue.


Link to above page (section 4 of the MCA on best interests)

#‘SOADs visit the person and explore the current and proposed treatment, certifying what is considered to be appropriate and reasonable in circumstances where the person cannot or does not consent to it, discussing it with team members and the person before reaching their conclusions.’

  • Clear documentation is vital:
    • Of the holistic assessment
    • Of the condition that’s being treated by the medicines
    • Of possible precipitating factors and measures that help the person*
    • Of patient involvement
    • Of carer and family involvement
    • Of multi-disciplinary team involvement
    • Of the decision making process and rationale for any best interests decision(s).
    • Of the rationale for prescribing / not prescribing
    • Including review dates and evidence of reviews
    • Monitoring of the effect of the medicine(s) that includes as required ‘prn’ medicines (Charts can be useful)
    • Documenting evidence of changes in response to the medicine(s) not being as expected, including if the medicines has no effect, and the actions taken on this.

The #Oliverscampaign web site illustrates why this is so important. Click  here for the web site

The Oliver McGowan Mandatory Training in Learning Disability and Autism – “Oliver’s Story”:

Clinically focused presentation on Oliver’s story, given to the NICE Medicines & Prescribing Associates on 1st May 2019. (14 minutes).

Information sources and links:

Learning from Deaths #LeDeR Review reports:


NHS Constitution


Competency Framework for all Prescribers


Feedback from teaching sessions (14/01/2018).

Taken from group work with  pre and post registration nursing students and senior nurse managers. N=210:


p7amgebk.jpg large


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



Supporting Treatment and Appropriate Medication in Paediatrics (STAMP)




Click on the image for more.

Feedback and views welcome, send them to

Personal views of Steve Turner RGN; RMN; Ba (Hons); P.G. Dip Ed

Steve is a nurse prescriber, Head of Medicines and Prescribing for @MedicineGov , Associate Lecturer at Plymouth University  and a former NICE Medicines and Prescribing Programme Associate.

You can follow Steve’s tweets @MedicineGovSte   hashtag #MedLearn


Version 6   Dated 15.03.2021

Revision history:


*Following feedback from parents & carers I’ve changed some wording and added some additional wording which puts the patient first. Thank you for the feedback.


Added the video from Paula McGowan telling Oliver’s’ story at a STOMPLD event.


Updated with link to the RPS Competency Framework for all Prescribers, following feedback from readers.


Updated to include reference to diagnostic oversahdowing.


Updated to include allergies, sensitivities adverse reactions and feedback from teaching sessions.


Updated to include specific mention the Mental Capacity Act.


Updated to include the #Oliverscampaign web site


Updated to include the training consultation and STOMPSTAMP link.


NHS Constitution link and image added.


Notes that medicines related option should only be considered if non-medical options have not worked. Minor amendments to text.


Updated to include a presentation to the NICE Medicines & Prescribing Associates Team.


Updated to include the 2019 Learning From Deaths Review Report

21/08/2019 Updated following feedback re: evidence base on prescribing combined antipsychotics. Point revised, new sentence and link added, ‘There is a limited evidence base for this type of prescribing.’

15/03/2021 Updated to include the Health Education England presentation by Oliver McGowan’s mother Paula McGowan, which is part of the Oliver McGowan Mandatory Training trials in Learning Disability and Autism.

18/10/2021 Updated to include reference to the updated RPS Prescribing Competency Framework for All Prescribers.

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s