Draft:Dopamine Agonist Action Group

Dopamine Agonist Action Group (DAAG) is a UK-based volunteer-led patient advocacy and campaigning organisation focused on the adverse side-effects of dopamine agonist medications. It was founded in 2026 by patients, carers and family members with lived experience of harms associated with the drugs.

The organisation was formed following the BBC investigative podcast series Impulsive, which examined the behavioural effects of dopamine agonists and their impact on patients and families.

Organisation

DAAG was founded by Emma Sanderson-Nash, Freddie Waite, Julie Gould and David Williams.

Its advisors include:

• Joeli Brearley MBE, campaigner, author and founder of Pregnant Then Screwed;
• Lee Pitcher MP, Member of Parliament for Doncaster East and the Isle of Axholme;
• J. Andrew Berkowski, neurologist and sleep medicine specialist; and
• Hamish McCallum, barrister.

Author Sally Gardner has publicly supported the organisation's campaigning after speaking about her own experience of compulsive behaviour while taking dopamine agonist medication.

DAAG is an independent, volunteer-led organisation and works with other patient organisations, including RLS-UK, where their objectives overlap.

Impulsive podcast

DAAG was established following the 2026 ten-part BBC investigative podcast series Impulsive, which examined the behavioural effects of dopamine agonists and their impact on patients and families.

The series primarily investigated impulse control disorders, including compulsive gambling, hypersexuality and compulsive shopping. It also examined patient warnings, recognition of adverse effects, the role of the pharmaceutical industry and healthcare system, and the difficulties patients and families can face in recognising medication-induced behavioural changes.

DAAG co-founder Freddie Waite featured in Impulsive, discussing his family's experience of dopamine agonist-induced behavioural changes. Fellow co-founder Julie Gould acted as an advisor to the series, drawing on her own experience and research.

Campaigning and MHRA review

The BBC investigation brought wider public attention to dopamine agonist-related harms and was followed by the Medicines and Healthcare products Regulatory Agency (MHRA) reviewing whether further action was required concerning existing warnings about impulse control disorders associated with dopamine agonists.

In June 2026, BBC investigations correspondent and Impulsive presenter Noel Titheradge and Freddie Waite appeared on the Parkinson's podcast Movers & Shakers to discuss the investigation, dopamine agonist-related harms and the formation of DAAG.

Emma Sanderson-Nash has engaged with parliamentarians on RLS and dopamine agonist issues and, together with Freddie Waite, met senior MHRA officials in July 2026 as part of the review.

David Williams launched a petition calling for a public inquiry into the use of dopamine agonists.

Dopamine agonists

Dopamine agonists are drugs that activate dopamine receptors, mimicking some of the effects of the neurotransmitter dopamine.

They are used principally to treat Parkinson's disease, restless legs syndrome (RLS) and endocrine conditions including hyperprolactinaemia and prolactinoma. Some are also prescribed off-label for conditions including depression.

Dopamine agonists used clinically include:

• Pramipexole – Parkinson's disease and restless legs syndrome;
• Ropinirole – Parkinson's disease and restless legs syndrome;
• Rotigotine – Parkinson's disease and restless legs syndrome;
• Apomorphine – Parkinson's disease;
• Cabergoline – hyperprolactinaemia and prolactinomas; and
• Bromocriptine – endocrine disorders including hyperprolactinaemia, and historically Parkinson's disease.

Partial dopamine agonists

Partial dopamine agonists activate dopamine receptors but produce a lower level of receptor activation than full agonists. They include the antipsychotic medications aripiprazole, brexpiprazole and cariprazine, principally used for psychiatric conditions including schizophrenia and bipolar disorder. Aripiprazole is also used in the treatment of Tourette syndrome, while some partial dopamine agonists are used in major depressive disorder.

Although pharmacologically distinct from dopamine agonists such as pramipexole and ropinirole, partial dopamine agonists have also been associated with impulse-control problems, including compulsive gambling and other compulsive behaviours.

Adverse effects

Impulse control disorders

Impulse control disorders (ICDs) are behavioural disorders in which a person develops difficulty resisting impulses or urges that are harmful to themselves or others. When associated with dopamine agonists, they can include compulsive gambling, hypersexuality, compulsive shopping and binge eating, as well as other repetitive or compulsive behaviours.

ICDs have been most extensively studied in people with Parkinson's disease. The DOMINION study (2010), a cross-sectional study involving more than 3,000 people with Parkinson's disease, found that 17.1% of patients taking dopamine agonists had an active ICD at the time of assessment. A later longitudinal study by Corvol et al. (2018) found that 51.5% of patients exposed to dopamine agonists developed an ICD during five years of follow-up.

There has been less research in restless legs syndrome (RLS). However, studies have reported ICD frequencies of approximately 6–17% among people treated with dopamine agonists for RLS.

Some patients may have reduced insight into changes in their own behaviour, meaning recognition can depend partly on partners, relatives or carers. ICDs may emerge some time after treatment begins; one study reported a median time to onset of 23 months, with a range from three months to more than nine years. This delay can make the relationship between the medication and subsequent behavioural changes more difficult to recognise.

Augmentation

Augmentation is a medication-induced worsening of restless legs syndrome caused by dopaminergic treatment. Rather than simply becoming less effective, the medication causes RLS symptoms to begin earlier in the day, become more intense, occur after shorter periods of rest or spread to previously unaffected parts of the body.

Concerns about augmentation have contributed to a shift away from dopamine agonists as routine first-line long-term treatment for RLS in recent clinical guidance. The 2026 Restless Legs Syndrome Foundation treatment algorithm, co-written by DAAG advisor J. Andrew Berkowski, states that dopamine agonists are no longer considered first-line treatment for chronic persistent RLS and cites estimates that augmentation occurs in approximately 42–70% of patients treated with dopamine agonists over eight to ten years. Where augmentation develops, the algorithm recommends weaning and, where possible, discontinuing the dopamine agonist rather than increasing the dose or switching to a longer-acting dopamine agonist.

Dependency and dopamine agonist withdrawal syndrome

Long-term dopamine agonist treatment can be associated with dependency and difficulties reducing or discontinuing treatment.

Dopamine agonist withdrawal syndrome (DAWS) is a withdrawal condition that can occur when dopamine agonists are reduced or discontinued. It is characterised by a cluster of physical and psychological symptoms including anxiety, depression, agitation, fatigue, pain, sweating, nausea and drug cravings, and can be severe or prolonged in some patients.

DAWS has been most extensively studied in people with Parkinson's disease, although it has also been reported in people treated with dopamine agonists for restless legs syndrome. Studies have estimated that approximately 15–24% of people with Parkinson's disease who reduce or discontinue dopamine agonists develop DAWS.

Withdrawal can be particularly challenging when treatment needs to be reduced because of an impulse control disorder or, in RLS, augmentation, meaning that patients may experience significant withdrawal symptoms while attempting to stop the medication responsible for the original adverse effect.

Shame, stigma and recognition

Shame, stigma, fear of judgement, and impaired insight can all affect the recognition, disclosure and reporting of dopamine agonist-associated behavioural changes. ICDs can involve gambling, sex, spending, eating and other behaviours which patients may find difficult to disclose, particularly where they fear judgement or disbelief. Patients and families may also encounter scepticism that significant changes in behaviour could be caused by medication.

DAAG has argued that these factors should also be considered when interpreting research based on patient disclosure: the likelihood of recognising or reporting an adverse effect may not necessarily be the same as the likelihood of experiencing it.

The issue can continue after the behaviour itself has stopped. People affected by medication-induced changes in judgement and behaviour may experience guilt, shame or self-blame, while their actions may be attributed by themselves or others to character, personality or personal choice rather than recognised as a potential medication effect.

DAAG has highlighted the need for appropriate psychological and therapeutic support for people coming to terms with these experiences and their consequences.

DAAG has therefore sought greater awareness of medication-induced changes in behaviour and judgement, reduced stigma, and improved psychological and practical support for affected patients and families. As part of this work, it has engaged with UK mental health charities including Mind and Rethink Mental Illness.

Use in depression and other psychiatric conditions

Pramipexole has been studied and prescribed off-label for treatment-resistant depression and bipolar depression, based in part on its effects on dopamine pathways involved in motivation, reward and anhedonia. Recent clinical trials have investigated pramipexole as a treatment for people whose depression has not responded adequately to conventional treatments.

The use of dopamine agonists in psychiatric populations may create additional challenges in recognising and attributing behavioural adverse effects. Changes in impulsivity, risk-taking, sexual drive, spending or goal-directed activity could potentially be attributed to the underlying psychiatric condition, changes in mood or personality rather than recognised as medication-related.

This is also relevant because a history of depression has historically been identified in studies as a possible risk factor for developing impulse control disorders during dopamine agonist treatment.

Aims and objectives

DAAG's stated objectives include strengthening the evidence base concerning dopamine agonist harms and improving understanding of their prevalence and wider consequences.

The organisation campaigns for stronger warnings, including a black box warning; improved informed consent, monitoring, medication review and safeguarding; and appropriate involvement of families and carers, particularly where affected individuals may not recognise changes in their own behaviour or judgement.

Other objectives include:

• development of NICE clinical guidance for restless legs syndrome, reflecting changes in international treatment recommendations;
• improved public and clinical understanding of the effects dopamine agonists can have on behaviour, judgement, impulse regulation and insight;
• reduced stigma and improved psychological, practical and peer support for patients and families;
• improved clinical support for dependency, withdrawal and DAWS;
• improved support for people during withdrawal and longer-term recovery from dopamine agonist-related harms, including access to appropriate psychological and therapeutic support for people coming to terms with medication-induced changes in behaviour and their consequences;
• recognition and appropriate redress for people who have experienced harm; and
• appropriate monitoring and safeguarding as dopamine agonists are prescribed or investigated for new indications.

DAAG has engaged with the MHRA, members of the UK Parliament, patient organisations and mental health charities in pursuit of these objectives.

See also

• Dopamine agonist
• Impulse control disorder
• Parkinson's disease
• Restless legs syndrome
• Dopamine agonist withdrawal syndrome
• Hyperprolactinaemia
• Prolactinoma
• Pharmacovigilance

External links

• Official website