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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 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) campaign by the NHS.
Family Carer Medication Consultation
The CBF was asked 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.
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.
The CBF continue to raise the issue of STOMP / STAMP and are currently involved in pieces of work to do this including:-
- Developing 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
- Collaboration with MindEd to produce 6 online STOMP modules, developed in partnership with family carers recruited by the CBF. The first of the six sessions is planned to go live in April 2021.
- Collaborating with family carers to create and distribute STOMP information packs to CB-NSG core members to share with family carers and professionals in their network