A DESPERATE mum is demanding a face-to-face meeting with senior Scottish ministers over a ‘broken promise’ to facilitate a lifesaving drug for her son.
Lisa Quarrell needs to find £1500 every month for a private prescription for medical cannabis to treat 11-year-old Cole Thomson’s rare form of epilepsy.
The schoolboy was suffering up to 20 seizures a day before a daily dose of cannabis-based Bedrolite helped to bring his condition under control. Cole has gone from being confined to a wheelchair to playing football, but the ongoing financial pressure to fund his treatment is bringing an unbearable burden on his family.
Lisa claims that First Minister Humza Yousaf, while working as the country’s health secretary, gave her personal assurances that he would try to help with the bureaucracy around the drug being prescribed on the NHS.
But she says despite repeated attempts to contact him via his office, nothing has ever been done and she is now being met with a wall of silence.
Lisa explained: “Mr Yousaf listened at length to Cole’s case and about how his life had been transformed by taking Bedrolite daily.
“He promised me that he would go away and see how the Scottish Government could help, how it could facilitate his treatment without us having to pay for it privately. That was more than a year ago, and we’ve heard nothing.
“He is now First Minister and I want him to follow up on the hope he gave us.”
Lisa says she has only managed to pay for Cole’s treatment with the help of a group of big-hearted local businesses who were rallied by ice-cream magnet David Equi.
She said: “When they learned of Cole’s plight, they immediately wanted to help. Collectively they pulled together £20,000 to fund his medicine privately for the last 12 months, but it is hard for anyone to keep that level of fundraising going.”
Lisa says she faces a heartbreaking decision when the cash pot runs out in the new year. Without medical cannabis, Cole’s seizures will worsen, leaving him facing a huge operation where surgeons would be forced to cut his brain in half.
She told the Glasgow Times: “I could end up in a position where I will need to consider selling our home, because without the money to keep buying Cole his medication his life will be on the line.
“It is a decision no mother wants to face, the roof over your children’s head or looking after what they need to keep them well. It is tearing me apart.
“I don’t want Cole to endure what I consider to be a barbaric surgery that could leave him unable to walk or talk. He’s already had extensive procedures when he was younger and Bedrolite is the only medication that has helped Cole have a quality of life.”
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Bedrolite is a medical cannabis oil made by Bedrocan, the sole supplier of medicinal cannabis to the Dutch government's Office for Medicinal Cannabis.
The oil contains two key active compounds in cannabis for medical use: THC, which is psychoactive and gives a feeling of being "high", and CBD, which does not.
Lisa says medics remain sceptical about its benefits, but she says it has changed Cole’s life, adding: “Before this, he was having 20 seizures a day – now he is playing football, going to Tae Kwon Do and attending mainstream school. None of that would have been possible without this drug in my opinion.
“I was made a promise by the First Minister and I want him and current health secretary Michael Matheson to get around a table with me and explain why they won’t help my son. Mr Yousaf told me he would help bring change, and I deserve to know why he has never made good on that promise.”
A Scottish Government spokesperson said: “We have enormous sympathy for Cole Thomson and his family, and the Chief Pharmaceutical Officer is in regular contact with them. We deeply appreciate the very difficult situation any family will face in these circumstances.
“The regulation, licensing and supply of medicines remain reserved to the UK Government – this includes the scheduling of cannabis-based products for medicinal ese – and the Scottish Government has no power to alter this while responsibility rests with Westminster.
“We will continue to work with the UK Government, as well as to explore internally what further support we could provide to families like Ms Quarrell’s who find themselves in this very difficult situation.”
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