Campaign updates & press releases
DAAG welcomes four new advisors as patient safety campaign enters next phase
London, UK – 29 July 2026 – The Dopamine Agonist Action Group (DAAG) today welcomed four advisors, bringing together expertise from medicine, Parliament, law and patient advocacy to support its campaign to improve awareness, informed consent and patient safety surrounding dopamine agonists.
This marks an important milestone in DAAG's development. Since launching in 2026, the volunteer-led organisation has worked to raise awareness of the side effects of dopamine agonists while engaging with patients, clinicians, researchers, parliamentarians, charities and the Medicines and Healthcare products Regulatory Agency (MHRA) to improve understanding, support and safeguards.
The new advisors reflect DAAG's commitment to working collaboratively with clinicians, researchers, policymakers and people with lived experience to improve the safe use of dopamine agonist medications. They will share their expertise and experience to help inform DAAG's work as the organisation continues to grow.
The advisors are:
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.
Dr J. Andrew Berkowski - sleep neurologist and internationally recognised expert in Restless Legs Syndrome (RLS).
Hamish McCallum - barrister specialising in civil liberties, public inquiries and human rights.
Julie Gould, Co-Founder of DAAG, said:
"DAAG was founded by people whose lives have been profoundly affected by dopamine agonists, and lived experience will always remain at the heart of our work. Our advisors reflect our belief that meaningful change happens when patients, clinicians, researchers, campaigners, lawyers and policymakers work together.
We are delighted to welcome Joeli, Lee, Andy and Hamish. Collectively, they bring an exceptional breadth of expertise and experience, united by a shared commitment to improving patient safety. Their advice will help us ask better questions, challenge constructively where needed, and ultimately become a stronger organisation for the people we exist to serve."
Meet our campaign team and advisors here, with further advisors to be announced in the coming weeks.
DAAG welcomes constructive first meeting with MHRA as review of dopamine agonists gets underway
London, UK – 23 July 2026
The Dopamine Agonist Action Group (DAAG) recently held its first meeting with the Medicines and Healthcare products Regulatory Agency (MHRA) following the launch of the regulator's safety review into dopamine agonists.
The meeting brought together DAAG Co-Founders Freddie Waite and Emma Sanderson-Nash with senior MHRA representatives, led by Chief Safety Officer Dr Alison Cave. We welcomed the opportunity to contribute at this early stage of the review and were encouraged by the openness of the discussion and the recognition that people with lived experience have an important role to play.
A central theme of the discussion was that dopamine agonists present a unique patient safety challenge because they can impair the very abilities patients normally rely upon to recognise harm, seek help and discontinue treatment. DAAG argued that this challenges many of the assumptions underpinning traditional approaches to informed consent, patient monitoring and adverse event reporting, and requires a fundamentally different approach to managing these risks.
The MHRA acknowledged that the true prevalence of impulse control disorders is likely to be underestimated and that augmentation remains poorly recognised and understood by both clinicians and patients. The review remains at an early scoping stage. The MHRA will now develop a proposed scope for the review and continue discussions with DAAG on how patients and families can contribute as the work progresses.
Read our full summary of the meeting here.
Emma Sanderson-Nash, Co-Founder of DAAG, said:
“This was a genuinely positive meeting. We felt listened to and were encouraged by the MHRA's willingness to involve patients from the outset. But this is only the beginning. There is still a great deal of work ahead, and we welcome the opportunity to help ensure the review reflects the realities faced by patients and families. We hope it leads to meaningful improvements in patient safety.”
DAAG response to updated 2026 RLS Foundation Algorithm
London, UK – 13 July 2026 - The Scientific and Medical Advisory Board of the Restless Legs Syndrome Foundation has published its updated treatment algorithm in Mayo Clinic Proceedings. The guidance reinforces the move away from dopamine agonists as routine treatment, places greater emphasis on identifying and treating iron deficiency, and strengthens recommendations on patient monitoring, informed consent and safer withdrawal.
Read our full summary and response, including practical advice for patients, here.
Emma Sanderson-Nash, Co-founder of the Dopamine Agonist Action Group (DAAG), said:
“This is a significant and long-overdue step forward for patient safety for people living with Restless Legs Syndrome. The updated guidance closely reflects many of the changes DAAG has been calling for, including better informed consent, closer monitoring, earlier recognition of complications and safer withdrawal from dopamine agonists.
While this algorithm is specific to RLS, many of its underlying principles are relevant wherever dopamine agonists are prescribed. The challenge now is ensuring these recommendations are consistently translated into everyday clinical practice. Every patient prescribed a dopamine agonist should be fully informed of the risks, monitored appropriately throughout treatment, and supported safely if their medication needs to change. That is how we turn expert guidance into better outcomes for patients.”
DAAG meeting with MHRA confirmed
London, UK – 8 July 2026 - We are pleased to confirm that the Medicines and Healthcare products Regulatory Agency (MHRA) has accepted DAAG's request for a meeting as part of its ongoing review of dopamine agonists and their associated risks.
The meeting, scheduled for 20 July, will provide an opportunity to share the experiences of patients and families affected by dopamine agonists, alongside the evidence and recommendations that have emerged through our campaign.
In its response, the MHRA acknowledged concerns about the real-world impact of impulse control disorders, including the potential for under-recognition and under-reporting, and confirmed it is reviewing whether more can be done to improve communication and awareness.
We look forward to a constructive discussion and will provide a further update following the meeting.
Co-founder of DAAG, Freddie Waite, said:
"We welcome the opportunity to meet with the MHRA. We believe the prevalence and severity of dopamine agonist side effects have been underestimated for many years, and that there is an important opportunity to strengthen warnings, informed consent and patient safety. We look forward to a constructive and collaborative discussion."
MHRA review of dopamine agonist medications welcomed, with call for stronger evidence-based action
London, UK – 2 June 2026 – The Dopamine Agonist Action Group (DAAG) welcomes the MHRA’s review into dopamine agonist medications.
The group believes that current clinical guidance does not adequately reflect the evolving evidence on the risks associated with these medicines, including impulse control disorders and augmentation. As a result, there is concern that both clinicians and patients may not always be supported to make fully informed decisions or to implement appropriate monitoring and safeguarding.
DAAG notes that more recent evidence suggests a higher prevalence of impulse control disorders associated with certain dopamine agonists, including pramipexole, which may not be fully reflected in current risk classifications and clinical guidance.
The group has requested an opportunity to contribute to the MHRA consultation process, including sharing patient and clinical perspectives to support strengthened warnings, guidance, and safety monitoring. This request has been submitted directly to the MHRA and also raised via Layla Moran MP, Chair of the Parliamentary Health and Social Care Committee. Read our letter here.
Speaking on behalf of DAAG, Freddie Waite said:
“This review is welcome and an important opportunity to improve patient safety. We hope the MHRA will listen carefully to those whose lives have been profoundly affected by dopamine agonist medications, including patients and families who have experienced severe and life-altering consequences.
If this review leads to stronger warnings, better monitoring, and fewer families going through what so many have already endured, including myself, it will be a significant step in the right direction.”