WARNING: Video contains scenes that viewers may find upsetting. Discretion is advised. The Edinburgh Evening News is sharing this video at the mother’s request.
A MUM-of-three who called for the legalised prescription of cannabis oil to help her five-year-old son who suffers from a rare form of epilepsy is now considering giving it to him herself as a last resort.
Karen Gray, from East Craigs, says she has “hit a brick wall” in her attempts to persuade the NHS to allow Murray to receive Cannabidiol (CBD) for medicinal purposes.
The youngster, a P1 pupil at Clermiston Primary School, receives treatment at the Royal Hospital for Sick Children for his condition, which can see him having up to 12 seizures a day. Karen has launched a petition and Murray’s Page on Facebook in a bid to raise support and awareness of her son’s condition.
Edinburgh Western MSP Alex Cole-Hamilton, who admitted he smoked cannabis in his student days, is onside and supports the use of CBD oil in the NHS to help ease conditions like epilepsy.
Karen said she has reversed her original decision not to take matters into her own hands, after speaking to other parents who have given their children cannabis oil bought online or in shops – to relieve “nightmare” seizures – and is now considering doing this for her son.
Karen said her son has only been able to attend school for a total of three weeks since starting and is missing out on his education and time with his friends. She is unable to look after Murray at home due to the severity of his epilepsy condition.
She said: “After speaking to a lot of parents who give their children the cannabis oil, I’ve gone from thinking it would be really irresponsible of me to go and do that without medical help to – am I actually being irresponsible by not giving Murray it?
“There’s a one in a hundred chance that Murray could die from a seizure and obviously having 12 on a bad day increases the risk.
“He’ll go through a period when he’s still having seizures but not many then he’ll just crash and have loads – it’s horrendous, we have to get him up to the hospital so he can be given rescue medication.
“We’re going up to the hospital now because he only got a pass for the weekend.”
The case mirrors that of Alfie Dingley, aged six, from Kenilworth, Warwickshire, who suffers from up to 30 seizures a day.
His family are also currently campaigning to have cannabis oil made available for medical purposes in the UK, after he responded to treatment with it in the Netherlands. Home Office ministers are considering the possibility of a cannabis oil drug trial to help him cope with his epilepsy.
Karen says that she feels angry that she has been put in this difficult position but states she is desperate to ease her son’s suffering.
Karen added: “I would be having to rely on the cannabis oil suppliers. How do I know that they know what they’re talking about and how do I know the dosage to give him when he’s on all this other medicine?
“It’s dangerous but I just feel I have to something that’s going to help him – due to all the people I’ve been speaking to who say don’t hang about, get him on the CBD oil. I’ve got people telling me what to get Murray and where to get it from as far away as the US. There’s a website called Charlotte’s Web that I think is based on a wee girl with epilepsy, so the guidance is out there for me to do this myself to help my son.
“But, it’s still a worry – I don’t want to do this on my own but I feel like I’ve hit a brick wall.
“I think there might be a licence put through for Cannabidiol to be made available on the NHS but that could take over a year and it really needs to be put through now.
“It’s just a joke really.”
Karen told the Evening News that medical staff have recommended Murray go on a strictly regulated, high-fat ketogenic diet which would mean she would have to take blood from him twice a day to make sure his blood sugar levels are normal and there was is no risk of hypoglycaemia.
She said she wants to hold off on the diet for now as it would make family life more difficult and may even add to Murray’s problems.
She added: “The ketogenic diet is the only option the NHS are offering me. I’ve just got this gut feeling to hold off with the diet for another week because I think it will make things worse.
“Murray loves his food, he’s always been a hungry boy asking for food but since he’s been on these steroids as well, he’s been horrendous.
“He has his dinner then half-an-hour later he’s telling me he’s hungry again and asking for more food.
“His weight is horrific just now because of the steroids and I’m thinking maybe we should just wait until he comes off the steroids before putting him on the diet.”
Scottish Lib Dems health spokesperson and local MSP, Alex Cole-Hamilton, said: “Karen Gray’s petition has done an amazing job highlighting the huge difference these treatments can make for kids like Murray. Any parent would want to make sure their child’s life is as pain-free as possible and it’s heartbreaking that under the laws currently in place, the NHS is not able to support patients who would benefit from the use of CBD oil.
“Many patients could benefit from such treatments if they had access to support from medical professionals in doing so.”
A Scottish Government spokesperson said: “The licensing, safety and efficacy of medicines is currently reserved to the UK government and is the responsibility of the Medicines and Healthcare products Regulatory Agency who operate on a UK-wide basis.
“We believe power in this area should be transferred so that in future the policy in this area would be for the Scottish Parliament to decide upon.”
Ley Sander: Pressing need for new medications to ease child epilepsy
There are more than half a million people in the UK with epilepsy. For one third, their seizures do not respond to current medications and they live with ongoing seizures.
This can impose a heavy burden in terms of education, employment prospects and quality of life. The need for better alternatives is pressing and we welcome the development of all new medications with the potential to offer hope to people with epilepsy.
Cannabidiol (CBD) has been effective in the treatment of refractory epilepsy for some with Dravet and Lennox Gastaut syndromes, tuberous sclerosis and infantile spasms.
The drug is also being evaluated as an add-on therapy for adults with poorly controlled focal seizures. Cannabidiol contains virtually no THC (tetrahyrocannabinol)- the property of cannabis which is responsible for psychoactive side effects. It is a pharmaceutical product and should not to be confused with the oils often available online. As a potential pharmaceutical drug, it is essential that it should go through rigorous regulatory and clinical trials to ensure its safety and efficacy. These must be evaluated relative to how the treatment is used. Benefits of the drug must outweigh the risks.
A new drug application for cannabidiol has been submitted to the US Food and Drug Administration and, if approved, it is likely to be available on prescription in the second half of 2018. A European submission has also been made for a marketing authorisation application. A decision is likely to be announced early in 2019. If it gains approval in the UK, the National Institute for Health and Care Excellence will need to assess the drug for cost effectiveness before it is available on the NHS. The results of trials offer hope for children who endure multiple seizures on a daily basis.
As with the complete armamentarium of epilepsy drugs, cannabidiol would seem to work for some but not for others.
Ley Sander, Epilepsy Society medical director and professor of neurology at University College London