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Psychotropic medicines for people with learning disability / autism

Prescribing psychotropic medicines for people with learning disabilities / autism 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. Often referred to as anti-psychotic medicines).

Summary:

People with learning disabilities and / or autism can be prescribed antipsychotic medicines for reasons other than to treat psychosis. This is a complex area that involves detailed knowledge off the patient and inclusion of everybody concerned with their care. This includes parents relatives and carers and must involve anyone with power of attorney [LPA] or a Court of Protection Deputyship. This piece sets are some of the key areas to consider when prescribing in the form of an aide memoire. It is important to note that the art and science of prescribing is not simply about writing a prescription. It is also prescribing decision if a medicine is stopped, changed or the dose altered, or if a non-medical option is chosen. Avoiding unnecessary prescribing should be an absolute priority and all guidelines refer to this. On the other hand, some patients require unusual medicines regimes. If this is the case, then the reasons for this must be fully documented as part of a multidisciplinary process including best interest decision-making. This must then be regularly monitored and reviewed.


Key points:

Facts:

  • 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, or is over/under the recommended dose).
  • 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. Concurrent prescribing of this nature renders the medicines off-label.
  • Psychotropic medicines in people with learning disabilities / autism who show symptoms of distress* should be initiated by an appropriate specialist, after which they are not always prescribed by a specialist in this area.
  • Diagnostic overshadowing may lead to inappropriate prescribing.

Diagnostic overshadowing is the attribution of a person’s symptoms to their mental condition, when such symptoms actually suggest a comorbid condition.

Actions to take for each person:

  • A Holistic assessment including taking all measures possible to understand why the person may be distressed, and taking actions to alleviate this, based around the person.*
  • Ensure that the prescribing takes into account the tests and  monitoring required for safe prescribing, and takes into account the latest national and local guidelines.
  • Before prescribing it’s important to understand all triggers and environmental factors. Plus the reasons for behaviour now and what has happened in the past, including what works well and what acts as triggers*.

There are ongoing concerns that psychotropic
drugs are used inappropriately in people with
intellectual disability. [2]

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 the prescribing.
  • Ensure Multi-Disciplinary team involvement & inter-organisational involvement.
  • If the prescribing deviates from guidelines (for example around tests and monitoring required and dosage) this must be documented, with a reason.
  • Act in accordance with the Mental Capacity Act [MCA] , where capacity to make a specific decision is lacking. (NB: Mental Capacity assessments must be time and decision specific).
  • Best interests decisions must involve all parties, be fully documented & regularly reviewed. This includes involving people who have Lasting Power of Attorney [LPA] or are Court of Protection Deputies.
  • Where appropriate, use 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.

Follow up and monitoring:

  • Confirm the monitoring required and ensure a process is in place for this.
  • Set a review date.
slide13

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 medicine(s)
    • Of the indication for each medicine (i.e. what it is being prescribed for) is explicitly documented, and this information is available to everyone involved in their care.
    • 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
    • Real time monitoring of the effect of the medicine(s), including any as required ‘prn’ medicines.
    • 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.

Information sources and links:

  1. Royal Pharmaceutical Society [RPS] (2021) A Competency Framework for All Prescribers  https://www.rpharms.com/resources/frameworks/prescribing-competency-framework/competency-framework 
  2. Royal College of Psychiatrists – Faculty of Psychiatry of Intellectual Disability (2016) Psychotropic drug prescribing for people with intellectual disability, mental health problems and/or behaviours that challenge: practice guidelines. Document Ref: FR/IXD/09 http://www.rcpsych.ac.uk/docs/default-source/members/faculties/intellectual-disability/id-faculty-report-id-09.pdf?sfvrsn=55b66f2c_6

Personal views of Steve Turner RGN; RMN; Ba (Hons); P.G. Dip Ed Feedback and views welcome, send them to carerightnow@gmail.com 

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




Version 7   Dated 25.11.2024

Revision history:

25/11/2024

Out of date links removed, information sources updated, some text & links removed. Extra explanatory text added.

03/05/18

*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.

12/12/2018

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

09/01/2019

Updated to include reference to diagnostic overshadowing.

14/01/2019

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

15/01/2018

Updated to include specific mention the Mental Capacity Act.

20/04/2019

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

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.’

18/10/2021

Updated to include reference to the updated RPS Prescribing Competency Framework for All Prescribers.