A pledge will be made to stop the over medication of people with a learning disability, autism or both (STOMP) following a highly successful service user led conference held on the Norfolk-Suffolk border.
The 70 people who attended the event, which was organised by Norfolk and Suffolk NHS Foundation Trust (NSFT), agreed to support STOMP, a national project involving many organisations, including NHS England, to stop over medication with psychotropic medicines.
Sue Bridges, NSFT’s Professional Lead for Learning Disabilities / Autism, said all of the presenters who spoke at the conference at Diss Business Hub were people with a learning disability, apart from David Gerrard, NHS England’s Pharmacist Lead for STOMP, who travelled to Norfolk from Newcastle.
“The 70 places were booked up in 36 hours and we had a waiting list of 45 people, which shows the appetite for information about learning disability and autism,” she said.
“We heard a number of powerful stories directly from service users who spoke about what it is like to be over medicated.
“They spoke about how they were not listened to and how the medication was not explained to them and how it affected their speech and ability to function.
“The ultimate aim of STOMP is to help people to stay well and have a good quality of life, which may involve non-medication interventions, such as positive behaviour support and psychological therapies.
“It is not about stopping medication but making sure it is used only when it is clinically appropriate to do so. Nationally, there have been stories about people on about half-a-dozen different anti-psychotic drugs but there is never any excuse for over-sedating people.”
The all-day conference was attended by staff from NSFT, including doctors, nurses and allied health professionals, representatives from social care in Norfolk and Suffolk and most of the two counties’ clinical commissioning groups (CCGs), as well as by provider organisations such as Autism Anglia and Cascade.
In a workshop session, delegates created a STOMP pledge which will be developed further before NSFT’s Board of Directors is asked to approve it.
Mrs Bridges said it was important to build on the conference’s success in raising awareness about STOMP, such as by encouraging doctors to think more about what they are prescribing and asking pharmacy staff to check prescriptions.
The conference was chaired by Paul McCluskey, who has learning disabilities and autism, and who joined NSFT in August in the new post of “Green Light Peer Support Worker.”
After the event, Mr Gerrard wrote to Mrs Bridges to say: “I thoroughly enjoyed the day and thought it was one of the best events I have attended in some time.”
Psychotropic medicines are a group of medicines that change how the brain works and are sometimes given to people because their behaviour is seen as challenging.
Public Health England says that every day about 30,000 to 35,000 adults with a learning disability are taking psychotropic medicines when they do not have the mental health conditions the medicines are for, such as psychosis, anxiety and depression.
While they are right for some people, they can cause problems when people take them for too long, take too high a dose or take them for the wrong reason. This can cause side effects like weight gain, feeling tired or “drugged up”, or serious problems with physical health.
For more information about STOMP, visit www.england.nhs.uk/stomp
Caption: Some of the speakers and organisers at the STOMP conference (left to right): Paul McCluskey; David Gerrard; Hayley Burwood from Opening Doors, a Norfolk user led organisation run by people with learning disabilities for people with learning disabilities; Ricky Tomlinson, Opening Doors; Dawn Collins, NSFT Director of Nursing, Quality and Patient Safety; Ian Hubbard, Opening Doors; Sue Bridges; and Francis Chennell and Andy Walton, both from Opening Doors.
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