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Medication

The use of inappropriate medication is a major issue for people with a learning disability. This webpage sets out the CBF’s work on raising awareness of and tackling this issue.

Background 

Following the scandal at Winterbourne View Hospital, a Serious Case Review found many patients were prescribed antipsychotic and antidepressant medication with no diagnosis of a mental health need to support their use. CBF wrote to the Minister in post when the Transforming Care concordat was issued, met with senior officials and made the case for a more comprehensive investigation. The further scrutiny of prescribing practices that resulted from this evidenced widespread inappropriate medication of people with learning disabilities and autism spectrum disorders, including that more than half of those prescribed medication did not have a diagnosis for which the prescriptions were a recognised treatment.  

These findings have resulted in specific recommendations to reduce the use of antipsychotic and antidepressant medication, including the Stopping the Over Medication of People with a Learning Disability, Autism or Both (STOMP) and Supporting Treatment and Appropriate Medication in Paediatrics (STAMP) campaigns by the NHS.   

STOMP/STAMP

In 2016, NHSE commissioned the CBF to run a consultation, providing a voice for family carers to share their lived experience when medication is suggested or prescribed for their relative, as well as to identify what information and support family carers currently have access to when medication is suggested or prescribed for their relative. 

We found that many family carers were concerned about the devastating side effects that medication had had on their relatives, and that despite these side effects, it was extremely difficult to have the use of medication monitored and reviewed. Family carers also shared that they were not given information and were not listened to during the process.  

You can read the full report here:

Stopping the Over Medication of People with Learning Disability, Autism or Both: A Family Carer Perspective

In 2022, the CBF were asked to run another focus group with family carers.This focus group, held in November 2022, looked at their experiences of medication, their views of the STOMP/STAMP programme so far, and what they think the next steps for STOMP/STAMP should be. This has been written up into an internal report by NHSE and we hope to see the outcomes of this work soon. 

Medication Pathway

The CBF have developed an online Medication Pathway, a resource for families of people with learning disabilities, autism or both who are prescribed or may be prescribed psychotropic medication.

You can access the medication pathway here:

Medication Pathway

MindEd STOMP Modules

The CBF collaborated with MindEd to produce 6 online STOMP modules, which were developed in partnership with professionals and family carers. These modules went live in January 2022.  

You can access these modules here: 

MindEd STOMP Modules 

The CBF and MindEd are currently working on an expansion of this work to create 4 additional modules, which we hope will soon be available. 

Other work

In June 2019 the CBF put together abriefing paper on medication, including background information about medication use and why it is important to avoid inappropriate medication.  

You can view this briefing paper here:  

Briefing Paper: Use of Psychotropic Medication in People with Learning Disabilities

 

The CBF have also worked with family carers to create STOMP information packs for family carers and professionals. This can be purchased from the CBF’s shop here, and is also available free of charge for family carers (please see the shop link for details on how to order your free copy)

Health

Health

Our resources give information about healthcare, answering your frequently asked questions about topics such as consenting to treatment and reasonable adjustments.

What to do when things go wrong

What to do when things go wrong

The information on this page will help you understand what is meant by poor support and abuse, and who to talk to if you suspect your relative is coming to harm or not being cared for properly.

Medication and Challenging Behaviour

Medication and Challenging Behaviour

There is a long history of excessive and inappropriate use of major tranquillising medication for “treating” challenging behaviour. Medication should not be used in this way. Quick read guide with a complete information sheet available to download.