East Kilbride's MSP has submitted a motion to Parliament in a bid to secure enough support for a members' debate on access to medical cannabis for children with drug resistant epilepsy.
Collette Stevenson hopes to highlight the financial pressure placed on the family of East Kilbride boy Cole Thomson, as they struggle to source £1300 every month to pay for a private cannabis oil prescription.
A three year battle for government funding has resulted in nothing, with the family forking out £80,000 to keep the youngster seizure-free in that time.
Nine-year-old 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.
However Cole's mum, Lisa Quarrell, argues Cole's 'miracle' medicine has saved his life.
She told Lanarkshire Live : "Cole was having multiple seizures, he couldn't speak or lift his arms and ended up in a wheelchair.
"Cannabis oil has given him stability for the first time in his life. He's now back at taekwondo and out playing football with his friends. I have my wee boy back.
"If his consultant can't prescribe Bedrolite my only option when the money runs out is to take Cole off it and retrial the drugs he has already tried. The risks are huge - it's gambling with his life."
Lisa is standing as Labour candidate for East Kilbride Central South in the next local election, with the hope that she can impact reform surrounding medicinal cannabis.
She added: "Hopefully this debate will pull up all the flaws in the system.
"I want it highlighted that the Scottish Government can help Cole and other kids like him right now but they have done nothing.
"Cole would be dead if it wasn't for this medicine."
The Home Office rescheduled Cannabis Based Products for Medicinal use (CBPMs) in 2018, however, the rescheduling does not go far enough in assisting some patients.
Collette Stevenson's parliamentary motion calls for a change in the rules to allow GPs, who consider it appropriate, to prescribe unlicensed CBPMs where a non-NHS consultant has initiated that course of treatment.
The British Paediatric Neurology Association published updated guidance in October 2021, outlining concerns around the lack of randomised control trials demonstrating a product’s safety, quality and efficacy.
Ms Stevenson believes observational and clinical trials will offer the best opportunities for expansion of the range of CBPMs available from the NHS.
She told us : "By submitting this motion, I’m hoping to secure enough support to hold a members’ debate and highlight the various issues Lisa and Cole have faced.
"Funding for this treatment is incredibly expensive and that of course leaves Lisa and Cole in a difficult situation as they try and raise funds.
"The current Home Office rules only allow certain doctors to prescribe cannabis-based medicinal products but I understand there is a hesitancy for unlicensed products given the lack of clinical trials.
"I want to see trials – supported by the manufacturers, academics and government – so that NHS consultants can have the confidence to consider prescribing this type of treatment.
"Additionally, I’m keen to discuss the calls for a rule change to allow GPs to be able to prescribe unlicensed cannabis-based medicinal products where a non-NHS consultant has initiated that course of treatment.
"I pledged to do all I can to help Lisa and her family – they are in such a difficult place and this issue needs resolved.”
Responding to MsStevenson's motion, Lisa said: "I am grateful to have Collette onboard and to her for submitting this motion.
"This is another first for us and I hope this will highlight our fight again within the Scottish Parliament and show just how broken the current system is. I want to be clear though that clinical trials are of no use to Cole and will not help him or other children currently taking this medicine as no parent who has their child safe on a medicine would ever consider taking them off it, risking their life to give data.
"However, if the Scottish Government are serious about fixing this they would look at observational trials plus clinical trials and put their money where their mouth is and have funding made available immediately."
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 product for which the family is seeking NHS funding is not currently licensed for use on the NHS, and unlicensed products are not routinely prescribed by NHS clinicians.
“It is important to note 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.
“Most specialists doctors have concerns around the quality, safety and efficacy of CBPMs, and the lack of robust evidence on their use, particularly the long-term side effects on the developing brain. It is only by building this evidence base that specialist doctors will gain the confidence to support the prescribing of unlicensed CBPMs.
“Through the work of our Chief Pharmaceutical Officer, we continue to explore solutions for the families currently affected. We also continue to support the development of UK based clinical trials which will help to build the evidence base for CBPMs.”
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