Scots mum calls for epileptic son's cannabis medicine to be prescribed on NHS

By Jacob Farr & Hannah Mackenzie Wood

An Edinburgh mum fears her epileptic son's life and family's financial situation could be at risk following the retirement of their paediatric neurologist later this year.

The loss of their doctor will mean that Murray Gray, 9, from East Craigs, will no longer have access to to a medical professional who best understands the effects of different medications on his condition.

Instead, Murray and his family will being forced to rely on a Cannabis Clinic for the youngster to receive essential treatments used to alleviate his symptoms, according to Edinburgh Live.

However, Karen Gray, Murray's mum, along with a specialist say this concern could be avoided if government allowed those being treated with cannabis medication to transfer their prescriptions to an NHS GP.

This would allow doctors to continue supplying epileptic child patients with cannabis remedies once they were deemed stable on the medication, as is the situation with any other medicine.

They say they should be able to do this through the “Shared Care” initiative.

Little Murray Gray (Edinburgh Live)

Karen says that this is something that exists for almost all patients on unlicensed controlled drug medication but for whatever reason the government is denying the same right to epileptic children in the UK.

Under the new arrangement, Murray will still be prescribed his cannabis oils but only through a private cannabis clinic and will no longer have “direct contact” with the paediatric neurological specialist.

It also means a cost increase as Dr Martinez was writing Murray’s prescription on compassionate grounds.

As a result, his paediatric neurologist, Dr Adelaida Martinez, has written to the secretary of state for health and social care, Sajid Javid, asking him to allow for the children under her care to be transferred to their local GP’s.

In the letter she writes: "I am a private consultant paediatric neurologist practicing at The Portland Hospital, and have been prescribing CBD medication to a group of children with intractable epilepsy since December 2018.

"I have done this on compassionate grounds as these children do not have the two defined types of epilepsy that enable them to be prescribed the licensed Epidolex through the NHS, or this medication when taken has not helped reduce their seizures.

"Without access to their unlicensed CBD medications, many of these children would have been left fighting for their lives.”

She goes on to express the difficulty in finding an alternative paediatric neurologist to be able to prescribe the medications Murray needs and that the only alternative appears to be private clinics which are outside of mainstream medical care - putting the children at greater risk.

She added: “Most of the children have been taking their prescribed medications for at least two years and have been stable, or significantly improved during this time.

"Therefore, I feel it may be more clinically appropriate to transfer them to their local GP’s. This would follow the same process that is already in place for any other unlicensed controlled drug medication.

“I know that a majority of the GP’s dealing with this group of children wish to prescribe, but, in order to so so, this requires a change of policy from the Health Department because it is a CBD medication which has been treated differently to other controlled drugs.”

In response to the letter, the Health Department said: “Our sympathies are with all patients and families dealing with rare and hard to treat conditions.

"The government has already changed the law to allow specialist doctors to prescribe cannabis-based products, where clinically appropriate and in the best interests of patients.

“Licensed cannabis-based medicines are funded by the NHS where there is clear evidence of their quality, safety and effectiveness.”

Murray suffers from the rare form of epilepsy called ‘Doose Syndrome’ and prior to receiving medicinal cannabis he would have hundreds of seizures a day.

As well as the seizures, Murray would also suffer adverse side effects from anti-epileptic drugs but since being administered with medicinal cannabis he has been seizure free for over two years.

But his family fear that he may be forced back to being in a state of status and hospitalised constantly.

There are also fears that the cost of treatment will skyrocket beyond what they are paying for the already expensive cannabis oils - Bedrolite and Bedica - which cost around £1,300 a month.

Murray with his family (Edinburgh Live)

On the response from the Health Department, mum Karen said: “NHS clinicians are saying they want trials before they will prescribe but won’t look at cases like Murray. They won't and can’t prescribe anything other than Sativex (for MS) and Epidiolex (for epilepsy).

"Murray has tried epidiolex, and it didn’t help. He was in status whilst taking this nonsense.

“Sativex and epidiolex being made available has absolutely nothing to do with any changes that the Health Department claims they are making.

"Sativex has been prescribed for years and epidiolex was about to be available to the NHS. Murray received this before the law changed in 2018 but again it did not work.

“The interesting paragraph for me in their response, is the one saying” ‘once patients are established on treatments, a specialist may direct a GP to prescribe under shared care arrangements. Under these arrangements the GP accepts Bla Bla Bla.’ This is absolute bull.

“If this was the case, then Murray would have had a shared care agreement a year and a half ago. Our GP even spoke to the media about wanting to prescribe it!

"They have missed out ‘NHS specialist’ in this statement, as it is only being prescribed privately. It’s a misleading statement to make everyone think their GP can prescribe - when they can’t.

“They will not pull the wool over parents eyes with statements like this.

“The NHS prescribe unlicensed medication everyday to our children. There is no excuse why we cannot save a child’s life and their families finances with a straightforward change to legislation.

“Murray lives a happy and full life now. Next week he is going swimming with his school. Something that he was unable to do before due to the threat of him having a seizure. Before he had to wear a helmet and was in and out of hospital all the time.

"Being on his cannabis medication actually saves the NHS money in the long run.”


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