- Just 10 children in Scotland will be prescribed cannabis-based treatments on the NHS
- Up to 7,000 Scottish children suffer from epilepsy
The Sunday Post has revealed that only 10 severely epileptic children in Scotland will be permitted to be prescribed medical cannabis on the NHS
Health Secretary Jeanne Freeman told parents of young sufferers of the strict limit on prescriptions despite claims that up to 500 children could potentially benefit from the treatment.
Scotland only has two specialist centres for childhood epilepsy, in Edinburgh and Glasgow. Both centres have been restricted to providing medical cannabis to just five children each.
Replying to a letter, Ms Freeman said:
“Each unit will be limited to applying for treatment for five children.
“The manufacturer will also have to approve the application prior to supplying the drug.”
Only patients with two specific types of drug-resistant epilepsy, Dravet Syndrome and Lennox-Gastaut Syndrome, qualify for cannabinoid treatment.
Speaking to Scotland’s Sunday Post, Lisa, 37, Lisa Quarrell, mother of Cole, 6, who suffers intractable epilepsy, discussed the ordeal her family is going through to get her son the medication he needs:
“We’ve been told he is on a very long list.
“We’ve all been waiting so long to get the help we believe will make our children’s lives more bearable.
“I’ve had to watch Cole go downhill. It’s heartbreaking when you know there’s a medicine out there that could help him.”
Emma Fitzharris, from Edinburgh also spoke to the Post, also voiced her distress concerning the proposal, telling The Post she was “shattered” to learn her son Reuben, 11, who suffers severe seizures, will not get a prescription.
“It’s terrifying because he can go blue during a fit for up to 10 minutes.
“I thought all our prayers were answered when the government decided to allow cannabis-based treatment, but I’ve just been told Reuben won’t get it.
“I’m going to have to beg and borrow from family and friends to get my boy overseas to doctors who can treat him.”
“Families shouldn’t have to fight to get treatment that can save their child from dying or make their life easier.”
– Karen Gray, Medical Cannabis Warrior
Lisa Cameron, Lisa Quarrell’s MP, commented on the “unfair” policy, which is leaving families desperate for access to a safer, potentially more effective, medication:
“It’s unfair to expect parents with children who are so desperately ill to continue waiting for a medicine that can help.
“These families don’t care who is to blame, they just want access to the treatment as quickly as possible and we need to get this situation sorted.”
Miles Briggs, Scottish Conservative health spokesman, said commented:
“It’s deeply disappointing this treatment is being restricted.
“There are up to 500 children who could benefit from this medication.
“It won’t work for every one of them but clinicians should feel free to prescribe this medication as and when they see fit, not politicians.”
Karen Gray, from Edinburgh, managed to collect the required 250,000 signatures for a petition which forced the issue of medical cannabis to be debated in Parliament, leading to the Home Office Minister, Sajid Javid, to begin the legalisation process for medical cannabis in the UK.
Discussing how her son Murray, 6, was one of the lucky few who has been given the drug on compassionate grounds, Karen said:
“I think we’re the only Scottish family I know who have been given Epidiolex.
“Families shouldn’t have to fight to get treatment that can save their child from dying or make their life easier.
“What kind of world are we living in when treatment that can help so many is being restricted to so few?”
A spokesperson for the Scottish Government said:
“As with all prescribing, it is a clinical decision to determine what medication is best for a patient.”
Chief executive of Epilepsy Scotland, Leslie Young, added:
“We applaud the introduction of any new treatment that can help but families should not take risks.”