UK Open Letter

Learn more about cluster headache in the UK

Urgent Access to Effective Treatments to End the Agony of Cluster Headaches

Cluster headache is one of the most excruciatingly painful conditions known to medicine, compared by those suffering to having a red-hot ice pick driven into the eye. It is also called "suicide headache" because some patients choose to end their lives to escape the pain. There is no known cure, and standard existing medical options are unable to consistently and reliably prevent or abort attacks. An estimated 29,000 British adults endure this unbearable pain every year.

Countless patients have reported previously unattainable relief using certain compounds of the indoleamine chemical family, which interact with serotonin receptors.[1] Psilocybin, LSD, 5-MeO-DALT and BOL-148 (a non-hallucinogenic derivative of LSD) have been shown to be effective in preventing attacks, and N,N-DMT has been found[2] to abort attacks within seconds and also have some preventative effects, even at sub-hallucinogenic doses. These are not isolated anecdotes: hundreds of patients have reported these effects in published scientific surveys, some clinical trials support these claims, and limited use in clinical settings has also demonstrated the effectiveness. In patient support groups and in conferences organised by a major patient advocacy group, patients relate the successes they have had in ending their pain through the use of these substances.

Based on an analysis of all the evidence, we have no doubt at all that these substances have medical value in preventing the excruciating pain of cluster headache where other therapies have failed. Although caution must always be exercised, these compounds are generally regarded as safe substances with low toxicity.[3]

None of these substances has yet been approved for the medical treatment of cluster headache. Conducting large-scale clinical trials is complicated by the difficulty to recruit patients with this relatively rare condition, and the lack of funding to study these non-proprietary compounds.

In the United Kingdom, psychedelics that could help cluster headache patients remain classified as Class A drugs under the Misuse of Drugs Act 1971 and placed in Schedule 1 of the Misuse of Drugs Regulations 2001, making them completely inaccessible through legal medical channels. This severe restriction means there are currently no compassionate use exceptions for cluster headache patients, forcing them to either suffer unnecessarily or risk criminal penalties to find relief. While scientific research is technically possible with special Home Office licenses, the bureaucratic barriers are substantial. Meanwhile, countries like Switzerland have established compassionate use provisions allowing physicians to prescribe psilocybin and LSD to cluster headache patients, and Canada has begun authorizing individual cases under its Special Access Program.[4]

This situation demands the same urgency as providing anaesthesia for major surgical procedures.

We call on the British government to institute the following measures:[5]


Rescheduling for medical use

Rescheduling
The Home Office should move certain psychedelics from Schedule 1 to Schedule 2 under the Misuse of Drugs Regulations, allowing medical and research use.

Medical recognition

Medical recognition
UK medical bodies, including the Royal College of Psychiatrists and neurological associations, should formally acknowledge the evidence supporting indoleamine-based treatments for cluster headache and develop clinical guidelines.

Compassionate access

Compassionate access
The government should establish a compassionate access program specifically for cluster headache patients, similar to the approach taken with medical cannabis, allowing specialists to prescribe these compounds when other treatments have failed.

Patient protection

Patient protection
No person with documented cluster headaches who uses these substances to treat their pain should face criminal penalties. The criminal code should be modified appropriately.

Research facilitation

Research facilitation
Following recommendations from the Advisory Council on the Misuse of Drugs, the government should create exemptions from Home Office licensing requirements for universities and hospitals researching these compounds for medical applications.

Insurance and NHS coverage

Insurance coverage
Once legally available, these treatments for cluster headache should be covered by the NHS when prescribed by appropriate specialists. Existing treatments such as high-flow oxygen should be provided without restrictions.
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