Results of CBF's Family Carer Medication Consultation

Report on family perspectives on use of medication

The Challenging Behaviour Foundation was recently asked by NHS England 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.

The result of that work is this report "Stopping the Over Medication of People with Learning Disability, Autism or Both: A Family Carer Perspective"

We found that many family carers welcomed national work to stop the over medication of people with learning disabilities and autism, but expressed frustration and anger at how long change is taking. Many family carers were anxious that their loved ones had been medicated inappropriately and had a range of debilitating side-effects. There was also evidence of a lack of information and advice for family carers regarding medication decisions. 

The CBF continues to work with NHS England, with further information resources for family carers around medication planned within the next few months.



The CBF has been raising the issue of over-mediation and inappropriate medication use for many years, with a succession of Government Ministers. A Serious Case Review following the scandal at Winterbourne View 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 more comprehensive investigationThe further scrutiny of prescribing practicesthat 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) campaign by the NHS. This survey and report by the CBF is a part of the STOMP campaign work. We aim to publish further analysis of the survey results.

Thank you to all family carers who took the time to complete this survey.


Download the full report here


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