Lanarkshire schoolboy Cole Thomson was at the heart of Holyrood's first ever members' debate on access to medicinal cannabis.
Led by East Kilbride MSP Collette Stevenson who highlighted the nine-year-old's desperate plight, members of the cross-party group on medicinal cannabis called the debate "long overdue" and made impassioned pleas to parliament to recognise cannabis oil as a "critical lifeline" to patients like Cole.
However, to Cole's mum's disappointment, notably absent on the day (June 1) was Health Minister Humza Yousaf, with Kevin Stewart, Minister for Mental Wellbeing and Social Care instead answering members' questions.
Lisa Quarrell told Lanarkshire Live the debate was a massively important first for Cole and for the Scottish Parliament, but she left feeling defeated yet again.
"Collette's opening speech was phenomenal and the other members all spoke really well and made really valid points", she said. "It's nice to have people so invested for the right reasons and talk from the heart with genuine passion.
"But it was frustrating and so disapponting the Scottish Government put up Kevin Stewart who has no background or relevance with this issue.
"It was obvious he came with a pre-written script and couldn't answer the questions put to him - it just shows where the government's priorites lie.
"Humza Yousaf promised me he was going to cut through the red tape and help Cole and he can't even make such an important debate.
"It just felt like a kick in the teeth when we've worked so hard to get here."
Collette Stevenson highlighted the financial pressure placed on Cole's family as they struggle to source £1300 every month to pay for a private cannabis oil prescription.
A four-year battle for government funding has resulted in nothing, with the family forking out in excess of £80,000 to keep the youngster seizure-free in that time.
Cole receives Bedrolite privately as his NHS consultant is not allowed to prescribe unlicensed medical cannabis due to a lack of robust evidence of the drug's safety, quality or efficacy.
Under the current law, only consultants can prescribe these unlicensed products. Ms Stevenson is calling for the Home Office to consider allowing GPs to prescribe these medicines.
It is their hope that with more evidence on their effectiveness, that NHS consultants will get the reassurances they need to consider prescribing more cannabis-based medicines.
Lisa says Cole is "living proof" of the effectiveness of cannabis oil.
Crippled by multiple daily seizures, wheelchair-bound and in hospital fighting for his life just three years ago, he is now seizure-free, thriving at school and back training at taekwondo with dreams of becoming a black belt.
Lisa added: "The government keep saying they don't have enough evidence. In October it will be four years since the change in the law and four years since I started fundraising and we're no further forward.
"I feel like I'm the only one fighting but it doesn't matter how much I do, the government always come back with the same line. They need to start saying what they can do, not what they can't do."
East Kilbride MSP Collette Stevenson said she was "delighted" to secure the first ever debate on medicinal cannabis at the Scottish Parliament.
"It was important to raise Cole’s case and hear of other people’s experiences from across Scotland and discuss the various complex and wide-ranging issues", she said.
"I understand there is a hesitance from doctors to prescribe cannabis-based products that do no not have a marketing authorisation as they do not have a rigorous evidence base behind them. I made the case during my speech that scientists, medics, pharmaceutical companies and other parties should consider different ways in which evidence can be gathered.
"I am hopeful there is potential for conducting observational trials involving patients who are already on a product. We desperately need manufacturers to commit to clinical trials too so that clinicians have the confidence to prescribe such products.”
Speakers including Central Scotland MSP Monica Lennon, Rona Mackay, MSP for Strathkelvin and Bearsden, Glasgow MSP Pauline McNeill and Alex Cole-Hamilton, Edinburgh Western MSP called on the government to help break down the legal barriers facing desperate parents of children with drug resistant epilepsy as they battle an "immoral" system in a bid to access lifesaving cannabis oil to keep their kids alive.
They highlighted that issues around prescribing cannabis-based medicines are embedded in a legal minefield which desperate parents are having to take on themselves with no support from the Scottish government.
Members identified a need to build the evidence base for cannabis-based medicinal products, to look at international evidence of the immeasurable benefits, get clinical trials underway and sort out the legal complexities.
Central Scotland Labour MSP Monica Lennon, who is a member of the cross-party group on medicinal cannabis said she was "pleased" to take part in the debate.
"Cole is an exceptional young boy and it has been heartbreaking to see his family struggle to fund the treatment they know is keeping him alive and seizure-free", she said.
"While I commend his mum, Lisa Quarrell, for doing all she can to raise awareness of this issue, it is a fight that cannot be left to individual families – it is a battle for us all.
"Change needs to come at government level, and I am encouraged that the UK Government will introduce trials involving cannabis medicine. It is now time to focus on what we can do in the Scottish Parliament rather than what we cannot do in order to make real progress."
A Scottish Government spokesperson said: “We have enormous sympathy for Cole Thomson and his family. 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 Use (CBPMs) – and the Scottish Government has no power to alter this while responsibility rests with Westminster.
“Although specialist doctors have been allowed to prescribe CBPMs on the NHS since 2018, most have concerns around their safety and efficacy and the lack of robust evidence on their use, particularly the long-term side effects. It is only by building this evidence base that specialist doctors will gain the confidence to support the prescribing of unlicensed CBPMs.
“The Cabinet Secretary for Health and Care remains committed to working with the UK Government on medicinal cannabis and recently met with the UK Government’s Minister for Patient Safety and Primary Care to discuss the development of clinical trials to build the evidence base for CBPMs.”
Lanarkshire Live has contacted Humza Yousaf's office for comment.
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