Good morning and welcome to the inaugural DAAG monthly newsletter!
It's been an exciting couple of months since we launched the campaign in June, and we're delighted to share some of the progress we've made.
The Launch
We announced DAAG on a pre-recorded episode of Movers & Shakers at the end of May, expecting to have another month before it went live. They unexpectedly brought forward the release date which made for a sprint finish of the website - but we got there!
Meeting with the MHRA
Then a big breakthrough came in July. Following our engagement with Layla Moran MP and Lee Pitcher MP, the MHRA agreed to meet with us as it begins the review into dopamine agonists. It was a very positive first meeting and marked the beginning of what we hope will be a constructive dialogue with the regulator.
Read our summary of the meeting here
Our new advisors
We are incredibly fortunate to have assembled an outstanding group of advisors whose expertise spans medicine, law, politics and campaigning. Their support is a huge vote of confidence in the campaign and will help us strengthen both our advocacy and our engagement with policymakers and healthcare professionals.
Joeli Brearley MBE - activist, author, speaker and founder of the award-winning charity Pregnant Then Screwed.
Lee Pitcher MP - Labour Member of Parliament for Doncaster East and the Isle of Axholme.
Hamish McCallum - barrister specialising in civil liberties, public inquiries and human rights.
Dr. J. Andrew Berkowski - sleep neurologist and internationally recognised expert in Restless Legs Syndrome (RLS).
Dr Berkowski also co-wrote the updated RLS Foundation algorithm in May this year, which recommended against the use of dopamine agonists in the standard treatment of RLS. See our summary and response to the updated guidance here.
Petition update
Our petition calling for a full public inquiry into the use of dopamine agonists has now passed 7,000 signatures. If you haven't already signed the petition, or know someone who may be interested, we'd be hugely grateful if you could help us move towards the 10,000-signature milestone. Find the petition here.
Coming soon
We will aim to circulate a regular newsletter to keep you updated on progress. Coming soon we expect to bring you:
Our ongoing input into the MHRA review
Parliamentary lobbying and raising awareness so more people come forward.
Engagement with gambling and mental health charities.
Developing our strategy for a statutory public inquiry.
Updates on discussions with lawyers and barristers.
And please get in touch if you have any ideas to help with our campaign!
Final word from our Co-Founders….
From Freddie: “It’s almost exactly a decade since I realised the devastating impact rotigotine had on my father. I tried my best to kick up a fuss and raise some awareness, but ran out of steam as life looking after Dad took over. But since the Impulsive podcast, meeting my fellow DAAG co-founders, and seeing so many people subscribe and support the campaign - it truly feels like we are building something that can make a real difference. I get emotional thinking about it!”
And David “I’ve been leaflet dropping, putting up signs, going into pharmacies and joining hundreds of Facebook groups, getting one signature at a time. To see our petition gaining traction and the issue being talked about in Parliament makes it all feel worthwhile. It’s also helped raise awareness and helped scores of others finally join the dots. The DAAG dream team is already having a considerable impact.”
Emma and Julie have worked for many years with RLS-UK and the Health Unlocked Forum. Both suffered the effects of decades using dopamine agonists, including addiction and brutal withdrawal. Emma said “The stories appearing in the press are just the tip of the iceberg, but we feel we are being heard at last. These drugs can be dangerous and counterproductive and GPs need to know it!”
Thank you once again for your support - we couldn’t do this without you. If you know someone who may be affected by dopamine agonists, please consider forwarding them this newsletter or encouraging them to visit our website. Every conversation helps.
Best wishes,
Freddie, Emma, Julie & David
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