This month, MedCan Support has transitioned into the MedCan Family Foundation, introducing a new brand, new trustees, and pending charitable status, re-establishing its aims with the launch of its manifesto, No Child Left to Suffer.
Hannah Deacon and Matt Hughes co-founded MedCan Support with a clear mission at heart: to support families navigating complex neurological disorders and advocate for access to life-changing cannabis-derived medications through the NHS. Their motivation for establishing the foundation was deeply personal, having witnessed the significant improvements these treatments brought to their own children's lives.
In her mission statement as Chair, Hannah Deacon states:
“In a modern healthcare system, it is not acceptable that children who could be healthy are left to suffer with life limiting conditions when there is safe and effective treatment available. All because of red tape.
I know from my journey the difference these medications make for children and their families. But right now, bureaucracy and a tick-box approach is turning caring parents into criminals. That’s why MedCan wants an immediate shakeup of the system, so that kids are no longer denied the medicine that could save them.
With the launch of this manifesto, we are calling for an urgent 12 month plan from the government, medical bodies, and suppliers to get these medications to the families that need them with no more delays. Because no child should be left to suffer.”
With Hannah Deacon as the Foundation's Chair and Matt Hughes driving its work as CEO, this new approach marks a new chapter for this leading patient organisation dedicated to working on behalf of families living with complex neurological disorders. The need for the new generation of cannabis-based medications is urgent, and, for many, these treatments are a lifeline for their children.
Access is key for patients who rely on cannabis-based medicine. Such patients should be able to receive essential treatment and care without delay, and that too, on the NHS. High-quality data is essential to high-quality care and despite the complexities and lack of investment in epilepsy, the Foundation remains committed to gathering robust, in-depth data on cannabis-based medications.
Money is often a stumbling block for many families, with the struggle to afford life-saving medicine leaving them unable to cover basic living costs. In a compassionate response, MedCan earmarks a share of all funds raised to provide hardship grants and high-street vouchers. The issue of access often forces families to resort to poorly regulated over-the-counter or illicit products. MedCan is there for these families, offering them confidential support and advice. The Foundation's mission is to ensure families feel they can openly discuss their circumstances with doctors.
Support from experts in the sector
With the strong backing of various ambassadors, notable among them being Sir Norman Lamb, Tonia Antoniazzi MP, and Melanie Sykes, their collective efforts, bolstered by the support of dedicated clinical advisors and trustees, form a robust foundation for MedCan's goals.
One of MedCan's trustees is Professor Mike Barnes, who brings a wealth of knowledge and experience from his numerous prominent roles. As the director of Maple Tree, President of the Cannabis Industry Council, and President of the Medical Cannabis Clinicians Society, his influence spans various pivotal organisations within the cannabis industry. Adding to the team of trustees is Dr Callie Seaman, PhD. As co-chair of the Cannabis Industry Council, her significant experience in the field is invaluable. Not only does she hold an influential role on the Council, but she is also a veteran of the hydroponic industry, bringing a practical perspective to the work of MedCan.
Tom Cross serves as a leading advocate for families seeking to challenge the law in accessing life-saving medical treatment. His dedication in advocating for patients' rights has proven invaluable to MedCan's mission and to its challenge to NICE, which resulted in the clarification to prescribing for children. Alice Salisbury, an experienced communications director in the charity and health sector. As a parent of a child with epilepsy, her personal connection to the cause adds a unique perspective that further enriches the organisation's mission
The organisation also benefits from the expertise of its Clinical Advisors:
Dr Evan Lewis is a Paediatric Neurologist and serves as the Director of the Neurology Centre of Toronto. Dr Bonni Goldstein is a Paediatric Consultant with a special interest in medical cannabis. Finally, Dr Jennifer Anderson, a Canadian physician, advocates for the use of cannabis in paediatric epilepsy treatment, further enhancing the team's knowledge base.
Access support and stay informed
Parents and supporters wishing to know more can follow MedCan on Instagram @medcanfamily and access the website for FAQs and information to support families.
Visit medcanfoundation.co.uk to read the manifesto and learn more.
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