DAAG letter to UK’s leading Mental Health charities
The following letter was sent to Mind on 23 Jiune 2026. Similar letters were also sent to:
Dear Mind team,
I am writing as Co-Founder of the Dopamine Agonist Action Group (DAAG), a volunteer-led campaigning and advocacy organisation working to improve awareness, informed consent, safeguarding and support for people affected by dopamine agonist medications and their side effects.
Dopamine agonists are a family of drugs mainly used to treat Parkinson’s disease, Restless Legs Syndrome and certain endocrine disorders. However, while these medications can provide important clinical benefits, they have also been associated with significant behavioural and psychological side effects - particularly Impulse Control Disorder (ICD).
For some patients, ICDs have led to compulsive sexual behaviour, uncontrollable spending, pathological gambling and other risk-taking behaviours, often with disastrous consequences - relationship breakdown, financial ruin, homelessness, criminality, sexual violence (as offender and victim), suicide. In addition, dopamine agonists can be extremely difficult to discontinue, as they can impair insight while also causing dependency and withdrawal difficulties.
DAAG was established to build on recent press coverage and move toward tangible action. Earlier this year I appeared in the BBC podcast series, Impulsive, discussing my experience caring for my late father, Bill, who developed an ICD from his Parkinson’s medication, leading to profound changes to his behaviour and judgement. The story has more recently been covered by The Sun and The Sunday Times. All members of our campaign team have lived experience of these drugs and their harms, either as patients or carers.
Researchers and whistle-blowers have told drug companies for decades the likelihood and severity of these side-effects are underestimated. Cases go unreported due to the extraordinary silencing power of shame and embarrassment patients and their families may feel, and stigma around mental health and sex - particularly among the elderly. Many sufferers also encounter scepticism, with their experiences frequently misunderstood and dismissed as simply a lack of willpower and accountability.
What increasingly strikes us is that the dopamine agonist story is not simply a medication safety issue. It is a powerful illustration of the consequences of a societal and systemic lack of understanding about mental health, behaviour and judgement. We see this in the failures of physical health trials to adequately detect psychiatric harms, clinicians who advise patients to try treatment on the assumption that they can self-monitor and simply stop if side effects outweigh the benefits, and a legal and justice system that struggles to account for the role that illness and medication can play in shaping behaviour.
The issue also raises important questions about mental health parity. We often appear more willing to accept severe psychiatric and behavioural harms as a price worth paying for treating a physical health condition than we would be in the reverse situation.
We are also extremely concerned that lessons from the past risk being repeated as dopamine agonists are increasingly explored and prescribed off-label for treatment-resistant depression and other psychiatric conditions, particularly given the added complexity where medication-induced changes in behaviour or judgement may be difficult to distinguish from the underlying condition itself.
Given Mind's work on mental health awareness, stigma and the experiences of people living with mental health difficulties, I wondered whether this is a topic that may be of interest. I would welcome the opportunity to discuss our work further and explore whether there may be areas of common ground.
With best wishes,
Freddie Waite, Co-Founder
