Aims and Objectives

We call for a thorough and independent review of the evidence on dopamine agonist medications and their behavioural and psychiatric side effects - informed by physicians, psychologists, statisticians, and patients with lived experience. Historically, important gaps and limitations in the evidence base have contributed to an inconsistent picture of risk, creating confusion for clinicians and patients and potentially contributing to avoidable harm.

We believe greater scrutiny should be given to the powerful impact of shame, stigma and impaired insight, which can contribute to underreporting and uncertainty surrounding identified "risk factors" or vulnerable groups. Given how shame and stigma can vary widely across society, existing studies may not always distinguish between likelihood of harm and likelihood of recognition, disclosure and reporting.

We believe aspects of the existing evidence base may need to be re-evaluated in light of these limitations. We support further and improved research, data collection and reporting systems that better reflect real-world patient experiences and the true prevalence of harm.

We also support a comprehensive review of the wider harms associated with dopamine agonist medications. This should examine not only the prevalence of impulse control disorders and other adverse effects, but also their broader consequences for individuals, families and society, including financial harm, relationship breakdown, safeguarding concerns, involvement with the criminal justice system, loss of employment, mental health impacts and other long-term outcomes. A clearer understanding of the full scale, severity and societal impact of these harms is necessary to inform future policy, clinical practice and patient protection.

We recognise that a thorough review of the evidence may have significant implications for if, how and to whom dopamine agonists are prescribed. We believe future treatment recommendations should be guided by a robust and independent assessment of the available evidence rather than assumptions based on an incomplete understanding of the prevalence and severity of harm.

If dopamine agonists are prescribed, they should be accompanied by clearer and more effective warnings about the risks associated with these medications, including impulse control disorders, behavioural changes, dependency and withdrawal difficulties.

The current presentation of risk information often incorporates well-established behavioural science principles known to reduce salience and impair decision-making. Serious behavioural and psychiatric side effects may be overlooked, poorly understood, or lost amongst long lists of more familiar and less consequential side effects. More prominent warnings are needed to ensure that patients, families and healthcare professionals recognise and discuss these risks before significant harm occurs. 

Researchers and patient safety advocates in the United States have called for FDA “black box” warnings on dopamine agonists since 2014. Given the severity, prevalence and potential consequences of these side effects, we agree these are urgently needed.

The risks associated with dopamine agonist medications are not confined to a single condition and can affect patients regardless of why the medication has been prescribed. All patients should receive the same high standard of monitoring, review and safeguarding, regardless of diagnosis.

We support the development of consistent national standards for monitoring, review and safeguarding across all clinical indications for dopamine agonist medications. Patients should be routinely monitored for behavioural, psychological and neurological side effects throughout treatment, with family members and carers involved where appropriate, recognising that affected individuals may not always recognise changes in their own behaviour or judgement.

Patients should have access to regular medication reviews that consider both the benefits and risks of ongoing treatment in light of evolving evidence and clinical guidance. This should include proactive review of patients receiving long-term dopamine agonist treatment, particularly where prescribing decisions were made under earlier guidance. Significant developments in the evidence base should be communicated to both patients and healthcare professionals and reflected in ongoing treatment decisions.

Patients who wish to reduce, discontinue or transition from dopamine agonist medications should have access to appropriate clinical support, recognising that withdrawal can be complex and may involve augmentation, dependency, withdrawal symptoms or dopamine agonist withdrawal syndrome (DAWS).

We want to see a NICE Clinical Guideline for Restless Legs Syndrome (RLS), informed by the May 2026 RLS Foundation treatment algorithm and the findings of an independent review of the evidence base.

The updated 2026 RLS Foundation treatment algorithm represents a fundamental change in approach. Dopamine agonists, once considered standard treatment for many patients, are now recommended only in exceptional circumstances, including some patients receiving end-of-life care.

The name “Restless Legs Syndrome” may sound relatively harmless, but the condition can be severe, debilitating and life-altering for some patients, and deserves to be taken seriously.

National guidance should reflect the evolving evidence base, including greater emphasis on identifying and treating iron deficiency, the shift away from dopamine agonists as routine treatment and the growing international recognition of their long-term risks, while supporting informed, patient-centred treatment decisions.

We aim to build upon recent media coverage by improving public and clinical understanding of the serious harms associated with dopamine agonist medications. 

People affected by dopamine agonist-associated impulse control disorders frequently encounter scepticism, minimisation or misunderstanding of their experiences. Many of the behaviours involved - compulsive gambling, hypersexuality, compulsive spending and other profound changes in judgement and behaviour - challenge common assumptions about personal responsibility, self-control and decision-making.

Many people take for granted their ability to recognise, assess and reject harmful thoughts or impulses. This can make it difficult to comprehend how medication-induced changes in judgement, behaviour and insight can develop gradually, often without the affected person fully recognising what is happening. As a result, patients, families and healthcare professionals may not recognise emerging problems until significant harm has already occurred.

Improving awareness therefore requires more than simply listing side effects. It requires a clearer public and clinical understanding of how these medications can affect judgement, behaviour, impulse regulation and insight, and why affected individuals may not always recognise these changes themselves.

We also believe greater awareness is needed amongst healthcare professionals. Evidence suggests that many patients are not consistently warned about the risks of impulse control disorders, augmentation, dependency and withdrawal difficulties, and that existing guidance is not always implemented in practice. We support improved clinician education, stronger adherence to clinical guidance, and clearer communication with patients and families throughout treatment.

We aim to challenge the shame, stigma and moral judgement often associated with impulse control disorders and other behavioural side effects linked to dopamine agonist medications.

We recognise that stigma surrounding sexuality, mental health and compulsive behaviours can make it particularly difficult for people to seek help. Sexual desire and discussion of sexual health are normal parts of life at any age, and patients should feel able to discuss sensitive behavioural changes openly and without embarrassment or judgement.

Many affected individuals report feelings of embarrassment, self-blame and isolation. We believe greater awareness is needed that these harms do not necessarily reflect a person's prior character, values or behaviour.

We support compassionate, informed and non-judgemental support for patients, carers and families affected by dopamine agonist-associated harms. This includes improved access to safeguarding, mental health support, financial advice, peer support and other services that help individuals and families recover from the consequences of these conditions.

We believe it is also necessary to address the harms experienced by patients since the introduction of dopamine agonist medications.

Many people were prescribed these medications without adequate warnings about the risks, while others who experienced serious behavioural changes were misdiagnosed, disbelieved, or treated without sufficient recognition of the role their medication may have played. For some, the consequences of impulse control disorders included the loss of savings, relationships, careers, liberty, and, in some cases, their lives.

Justice means more than preventing future harm. It also requires recognition of past experiences, acknowledgement of where systems may have failed, and fair consideration of the consequences for those affected.

We support efforts to ensure that past harms are properly examined and addressed through appropriate legal, regulatory and formal channels. This should include creating meaningful opportunities for affected individuals and families to share their experiences, both to inform ongoing policy and practice and to ensure that those impacted feel heard, respected and treated with dignity.

Patients prescribed dopamine agonists should have access to structured, evidence-based support when reducing, discontinuing or transitioning from these medications, including specialist advice on tapering and alternative treatment options where appropriate.

Some patients experience significant difficulties reducing or stopping dopamine agonists, including Dopamine Agonist Withdrawal Syndrome (DAWS), while others require support managing the return of their underlying condition or transitioning to alternative therapies.

Recovery, however, extends well beyond medication. Patients affected by Impulse Control Disorders (ICDs) and other psychiatric side effects, together with their families, may require psychological support to understand and come to terms with medication-induced changes in behaviour, judgement and personality. Many also need practical support rebuilding relationships, finances, employment and everyday life following the consequences of these behaviours.

These services should form a routine part of care rather than being left to patients and families to navigate alone.