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The Chief Executive of VoiceAbility looks at the crucial role advocates have to play in the campaign to Stop the Over-Medication of People with a learning disability, autism or both (STOMP):
In England alone, between 30,000 and 35,000 adults with a learning disability, autism or both are taking a prescribed psychotropic medicine when they do not have a diagnosed mental health condition.
These medicines are prescribed for psychosis, depression, anxiety, sleep problems or epilepsy. Sometimes they are given to people because their behaviour is seen as challenging, although evidence that psychotropic medication can help with behaviour that challenges is poor.
People with a learning disability, autism or both are more likely to be given psychotropic medicines than other people. These kinds of medication can cause serious side-effects and research by the Learning Disabilities Mortality Review (LeDer) Programme and others has shown that the inappropriate use of psychotropic medicines can contribute to, or even cause, a person’s death.
I’ve seen directly how over-medication can blight the lives of people with learning disabilities and people with autism and their families. I want to generate awareness and support from the advocacy sector I work in, so that more advocates play a greater role in helping to address these issues.
Advocates support and enable people to have their voice heard. They are in a good position to enable people who may be affected by medication issues to speak out and to get the support that they need. In some circumstances, advocates may have not only the opportunity to help, but also a legal duty to do so.
We’ve launched a ‘STOMP top tips’ guide in partnership with NHS England to help to inform and energise more advocates to play a fuller role in addressing over-medication.
For example, one of our tips is: ‘Ask about health and sensory checks’ – we want to remind everyone that if someone has an undiagnosed or untreated health condition or sensory impairment, this might be the reason why his or her behaviour has changed or is seen as challenging. Dealing with the underlying issue could reduce the need for psychotropic medication.
The guide is very practical, with clear summaries and links to further resources. This includes a link to our specially written outline of the law as it relates to STOMP and advocacy, which will also help health and social care professionals to know when to refer to advocacy.
We hope that the top tips will provide support and motivation to advocates. We believe that it may also be helpful to family members. More than anything we hope that it plays a role helping people to have a better life by supporting people to address over-medication.
You can find the top tips resources at voiceability.org/stomp Please do spread the word.