Dear friends and supporters!
We've had a busy couple of months at DAAG, with growing media coverage, new connections across the charity sector, and our petition passing 10,000 signatures.
While progress with regulators and government remains slow, we're encouraged by the increasing awareness and the opportunities emerging to make a difference.
Here are our main updates:
Petition for a public inquiry
Our petition passed 11,000 signatures in just ten weeks, thanks largely to a monumental effort from David. Thank you to everyone who signed! This triggered a response from government:
“The Government is not planning a public inquiry. The medicines regulator is reviewing the side effects of dopamine agonists and whether further action is needed”. You can read the full response and still sign our petition here.
This was a disappointing but perhaps predictable outcome. The Petitions Committee has been asked to review whether the government's response adequately addresses our request, and we will consider a further petition in 2027, potentially aiming for 100,000 signatures in pursuit of a parliamentary debate.
We will nevertheless keep pushing for a full inquiry, although we do not expect further progress until the MHRA review has concluded. We are still waiting to hear back from the MHRA following our positive first meeting in July, particularly about the scope, timeline and how DAAG can help ensure patient voices are heard.
In the meantime, we are working on a more detailed case for why a full public inquiry is still necessary. In short, whilst we are hopeful an MHRA review may improve things going forward, an inquiry will ask how we got here, how many people have been affected and how can they begin to receive acknowledgement, accountability, and justice.
Dopamine agonists recognised in criminal sentencing
In October, Sam McIver, 59, received a 33-month prison sentence, suspended for two years, at Lincoln Crown Court after admitting fraud involving money used to fund gambling. Sam had been taking dopamine agonists for RLS.
DAAG has been supporting Sam’s husband, Mick, through an extraordinarily difficult, drawn out and distressing ordeal, and we are relieved that the case has finally concluded. You can read the local news report here.
Importantly, the effects of dopamine agonists on impulse control were considered during sentencing. According to unofficial notes provided by Sam's barrister, the judge acknowledged that her medication significantly reduced her culpability. DAAG's petition for a public inquiry was also referenced in the sentencing remarks.
Although Sam avoided an immediate prison sentence, she still received a criminal conviction, and it is difficult to establish how much weight the medication evidence carried. Nevertheless, we consider this an important milestone in raising awareness of medication-induced impulsive behaviour within the criminal justice system. We are seeking an official transcript of the sentencing remarks.
World Mental Health Day
To mark World Mental Health Day on October 10th, we published an article:
The Dopamine Agonist Paradox: Why Mental Health Charities Need To Engage.
In the Dopamine Agoninist Paradox, we explore the intersections between dopamine agonists, mental health, behaviour and our concept of free will, the impact of shame and stigma on research and clinical guidance, and why mental health charities urgently need to engage - particularly now that pramipexole is being trialled and prescribed off-label for depression.
DAAG in the news
David shared his story in the Telegraph of caring for his father, Alan, and campaigning with DAAG. DAAG supporter Dorothy shared her story in the Daily Mail, covering the devastating dopamine agonist triple threat - impulsivity, augmentation and withdrawal. We are incredibly grateful to Dorothy for speaking so honestly and powerfully! Both articles are attached.
The Daily Mail article was particularly well-researched. However, the claim by the Royal College of GPs that “dopamine agonists are still prescribed relatively infrequently in general practice and often following specialist recommendation” is, we’re afraid, total horseshit simply not true.
Finally, Julie published this opinion piece with the Patient Safety Learning Hub.
Coronation Street storyline
Coronation Street has an ongoing story about a character, Sam Blakeman, who commits theft and crypto fraud. He has a diagnosis of schizophrenia and his doctors have attributed his behaviour to his medication, which, in the real world, would most likely be aripiprazole (Abilify) - a type of ‘partial’ dopamine agonist. We are pleased to see such a popular and iconic TV series raising awareness of this issue!
In Scotland, STV provides this dedicated support page for the storyline (although there doesn’t appear to be an equivalent on ITV in England) which directs viewers to Mind. However, whilst Mind provides valuable mental health support, their website does not currently offer specific information about dopamine agonists or impulse control disorders (as per all major mental health charities). We have written to ITV and Mind to encourage them to provide more relevant resources but as yet have not heard back.
Engagement with gambling charities
We were thrilled that the gambling support charity, Aquarius, reached out to DAAG to help review its support worker information and to present at a team meeting!
We shared anonymous stories of people who began compulsively gambling after taking dopamine agonists, highlighting the devastating emotional, relational and financial impact on patients and families. We also discussed how best to identify and support people experiencing these side effects, and we look forward to further collaboration.
Coming soon
In future newsletters, we aim to share:
Exciting upcoming media appearances!
Updates on the MHRA review
Updates on ongoing discussions with legal professionals in the pursuit of justice for patients and families
Further research into dopamine agonists and criminality
Engagement with mental health, gambling and debt charities.
If you know anyone working in these sectors, please share our newsletter and encourage them to get in touch!
Best wishes,
Freddie, Emma, Julie & David
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