Our resources give information about healthcare, answering your frequently asked questions about topics such as consenting to treatment and reasonable adjustments.
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.
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:
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.
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:
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:
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.
In June 2019 the CBF put together a briefing 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:
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)