Families Rally for Change
In a poignant demonstration of hope and determination, families from across the UK gathered at Westminster on November 5, holding photos of their loved ones and sharing powerful testimonies. They are calling for improved access to cannabis-based medicines through the NHS, as new statistics reveal a significant shortfall in prescriptions since the legalization of medical cannabis six years ago.
Every year since the law changed in 2018, these families have made their voices heard, urging Members of Parliament to dismantle the barriers that prevent them from accessing these crucial treatments. Despite the promises made, the reality remains stark: many patients continue to struggle without the support they need.
Staggering Statistics: A Shortage of Prescriptions
Recent data from the NHS Business Service Authority paints a troubling picture. Fewer than five patients have received NHS prescriptions for unlicensed cannabis medicines, while only 1,104 patients were prescribed licensed cannabis medicines in 2023. This marks a mere increase of 127 patients compared to 2021. Alarmingly, the number of children receiving these medicines has actually decreased during this period.
In stark contrast, the private sector has seen a boom, with around 35,000 patients currently prescribed cannabis through private channels. A recent report by the Care Quality Commission noted a staggering 118% increase in private prescriptions between 2021 and 2023, highlighting the disparity between the two systems.
Barriers to Pediatric Prescriptions
Access to cannabis prescriptions for children remains particularly grim. Currently, only 50 children in the UK can obtain a private cannabis prescription, which can cost upwards of £2,000 a month. The shortage of pediatric neurologists willing to prescribe these treatments has left many families feeling abandoned. A waiting list of over 700 children at Curaleaf Clinic underscores the urgent need for more prescribers in this field.
Dr. Simon Erridge, head of research at Curaleaf Clinic, has expressed frustration over the lack of progress in increasing the number of pediatric prescribers. He noted that many doctors are hesitant to prescribe cannabis due to pressure from their peers and professional bodies, such as the British Paediatric Neurology Association, which has been resistant to endorsing cannabis-based treatments.
Data Collection Issues
Another significant hurdle is the lack of comprehensive data on the safety and efficacy of cannabis-based treatments. The NHS Patient Registry was established to collect this crucial information, but as of 2023, it has yet to enroll any patients. This lack of data makes it challenging to assess the effectiveness of these treatments and to advocate for broader access.
Dr. Erridge has indicated that Curaleaf has offered to share data from its own registry with the NHS, but this offer has not been accepted. He emphasized the need for collaboration to create a more informed approach to prescribing cannabis-based medicines.
Urgent Calls for Innovation
As the debate continues, epilepsy charities are urging for innovative approaches to research and treatment options. With 35,000 children in the UK living with uncontrolled seizures, the demand for effective therapies has never been higher. Families are advocating for observational trials alongside randomized controlled trials to expedite access to treatments that demonstrate clear benefits.
Success Stories Amidst Challenges
Despite the obstacles, many families have found hope through cannabis-based medicines. Some children who have been prescribed these treatments since 2018 are now experiencing seizure freedom, a remarkable achievement given their previous struggles. Dr. Evan Lewis, a pediatric neurologist, has noted that the success rate of cannabis in achieving seizure freedom can be significantly higher than conventional anti-epileptic drugs.
Calls for Action from the NHS
Leaders from the Cannabis Industry Council have expressed their disappointment with the NHS, accusing it of failing patients in dire need of treatment. They are calling for a clear pathway for patients to access cannabis prescriptions through the NHS, emphasizing that the situation has not met the expectations set when legalization occurred six years ago.
In response, NHS representatives have acknowledged the concerns but maintain that they are committed to an evidence-based approach when it comes to cannabis treatments. They assert that licensed products are available where there is clear evidence of their safety and effectiveness, while unlicensed products require further validation before broader rollout.
Looking Forward
As families continue to advocate for their loved ones, the hope remains that the NHS will take meaningful steps to expand access to cannabis-based treatments. The stories shared by these families serve as a powerful reminder of the urgent need for change in the medical cannabis landscape in the UK.
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