Mother of Alfie Dingley Joins ECH to Improve Access to Medical Cannabis

Apr 18, 2019

LONDON: ECH, the group of companies behind the launch of the UK's first medical cannabis clinic, has reinforced its ambition to expand patient access by appointing Hannah Deacon as its Patient Advocacy Specialist.

Hannah Deacon, a tireless campaigner for access to medical cannabis in the UK, led a high-profile campaign on behalf of her young son Alfie Dingley which helped change the law last year. Alfie was the first person in the UK to receive a permanent medical cannabis license, obtained by Professor Mike Barnes, ECH's Chief Medical Officer.

Seven-year-old Alfie Dingley suffered up to 500 life-threatening seizures a month, and was admitted to hospital 48 times a year as a result of his severe epilepsy. Following successful treatment with cannabis oil, he has had only one hospital admission in a year, his seizures are controlled, and he can now live a more normal life. Although around 500,000 people in the UK have epilepsy, only one other person has been prescribed the treatment on the NHS[i].

ECH is committed to building the infrastructure that will make medical cannabis more readily acceptable and accessible, by delivering clinical education, access to consultation and treatment for people living with a range of chronic and debilitating conditions.

As ECH Patient Advocacy Specialist, Hannah will support the teams behind ECH, the network of Medical Cannabis clinics and The Academy, an online educational platform, to support the safe and effective use of medical cannabis. She will advise on the specific needs of patients who are navigating the system since the Home Office decision in November, and are still struggling to access medical cannabis. She will also help to ensure ECH's innovation in medical cannabis treatment best reflects the needs of patients with high unmet needs, including those living with chronic pain, neurological and psychiatric conditions.

Hannah Deacon commented Families were delighted when the law changed last year, they thought their battle was over. Now they are in despair. The families I speak to every day have exhausted all their options, and are suffering terribly but they still can't access the medical cannabis that could help them like it has helped Alfie.

I'm delighted to join ECH to continue to fight the battle to overcome barriers to medical cannabis in the UK, support better education and ensure patients right across the country get the access they need and the help they deserve.

Stephen Murphy, ECH Group Managing Director, added The legalisation of prescription cannabis has given people with chronic illnesses hope, and it is ECH's mission to fulfil that. We are thrilled that Hannah Deacon, who understands what it means to fight for the care her son deserves, has come onboard to share her insight and counsel on what more we can do to make sure that other patients - like Alfie - are no longer denied the treatment they need to survive. (PRN)

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