The Challenging Behaviour Foundation (CBF) 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 the report "Stopping the Over Medication of
People with Learning Disability, Autism or Both: A Family Carer
The CBF 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 a more comprehensive investigation. The 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
This survey and report by the CBF is a part of the STOMP campaign work. The CBF aim
to publish further analysis of the survey results.