At our 2017 Involvement Conference, where the people we support with disabilities direct us on how they want Walsingham Support to shape their support, people we support asked us to sign up to the STOMP campaign. Everyone is different, with different needs and abilities so since early 2018 Walsingham Support has been working towards stopping the over medication of people with a learning disability, autism or both.
Since then, Melanie* is one person whose life has changed significantly. Melanie has a complex learning disability, cerebral palsy and epilepsy and has communicated differently all her life. As Melanie communicates in ways that are not easily understandable, the team at Walsingham Support anticipate her needs and choices, such as choosing what Melanie wears and what Melanie eats. Staff have been supporting Melanie in this way since she moved to our support from a long stay hospital in 1996.
Following a seizure in 2001 Melanie was prescribed 100mg per day of anti-convulsant medication sodium valproate and clonazepam which was renewed by her GP every year. Melanie has had no further seizures since 2001so a few years after her first seizure staff felt that a medication review by her GP was necessary. The manager where Melanie lives questioned if Melanie was at very low risk of seizures, could she be spared the negative side effects of the medication? The GP said that the likelihood of another seizure was low but thought it best to continue the medication at the same level.
Every year staff raised the subject at Melanie’s annual health check, but her GP opted not to change the prescription. After a review of her support in 2016 via the Deprivation of Liberty Safeguards the Deprivation of Liberty Assessor opted to keep the dosage the same.
When staff became aware of the STOMP campaign they believed this could persuade the GP to reassess Melanie’s medication. At the next annual health review, a second opinion was requested, and staff described the STOMP campaign and how Melanie was a prime example of how it could improve her quality of life. The new GP was aware of the new STOMP campaign and after hearing about Melanie’s history was happy to begin the process to discontinue sodium valproate followed by clonazepam. It was important that careful monitoring was carried out throughout to monitor Melanie’s progress.
As soon as the sodium valproate was discontinued, staff noticed Melanie became more alert, more responsive and more mobile. She began laughing and giggling.
Following the stoppage of clonazepam 12 weeks later, Melanie has had no adverse side effects, or signs of seizure activity. She has become less drowsy, more vocal, and moving around in her bed independently, something she has never done before.
After 10 years of Walsingham Support staff petitioning the GP, and with support from a second GP and a change in Deprivation of Liberty Assessor, the STOMP campaign has finally enabled Melanie to have a reassessment of her medication and enjoy a better quality of life.
Melanie is currently on no medication at all and as a result her quality of life has improved dramatically including her responsiveness to her surroundings and interactions. Walsingham Support are committed to our pledge to STOMP and increasing the quality of life and happiness of every person we support.
*person has been anonymised.