The Scottish Medicines Consortium (SMC) is the body which decides whether new technologies and medicines should be made available on the NHS in Scotland.
In October 2015, the SMC invited comments from patient / parent organisations to contribute to their appraisal of Intuniv (guanfacine hydrochloride), a new non-stimulant medication for ADHD which they are currently considering.
Four Scottish ADHD Parent Groups (ourselves here at ADHD Parent Support West Glasgow, Mindroom, Dundee and Angus ADHD Support Group and Perth & Kinross ADHD Support Group) collaborated to undertake a rapid online survey of parents to inform our consultation submission. Together with ADHD Support West Lothian, we sent the survey out to parents in our groups.
The survey was circulated on 9th November 2015. By the closing date of 20th November, 87 responses had been received (from 64 mothers, 5 fathers and 7 foster carers/grandparent carers). Together these parents and carers have 92 children aged 6 – 18 with a diagnosis of ADHD.
The results were used to enable us to write our joint submission to the SMC, giving our views about the new medicine. These were considered by the SMC when they met to make recommendations about Intuniv on 6th January 2016.
Many thanks to all the parents who took the time to complete the survey. Although we were limited by space in our submission, the responses you gave helped give us a voice in Scottish health policy.
You can watch a video of our Chair, Geraldine Mynors, talking about the process of making the submission here.