The mother of severely epileptic Murray Gray was told his consultant was unable to continue his care due to the ‘stress’ the situation was causing him.
Murray, eight, who has a rare form of epilepsy known as Doose Syndrome, has been seizure free for 16 months since he has been receiving a medical cannabis prescription from a private neurologist.
His mum Karen, who is currently funding the £1,400 a month costs herself, has tirelessly campaigned for access on the NHS after Murray’s consultant refused to prescribe the medication.
His case was referred to the Refractory Epilepsy Specialist Clinical Advisory Service (RESCAS) which recommended he be weaned off the oils and treated with epidiolex – a medication which left Murray in epileptic status and in hospital for months.
Now the consultant, who has treated Murray since the age of two, has resigned as his neurologist claiming he is unable to continue to provide care due to his own ‘stress’ caused by the situation.
In a letter which Karen received ‘out of the blue’ he said he has been finding it ‘difficult to deal with’ her requests for Bedrolite and Bedica (which have a higher strain of THC) and claims the demand was having a ‘serious impact’ on him.
In a follow up letter sent on behalf of the Lothian NHS Board, Executive Medical Director Tracey Gillies said the ‘difference of opinion’ and emails from Karen ‘questioning his actions’ were putting the consultant ‘under a lot of strain’.
However, it is nothing compared to the financial and emotional strain faced by Murray’s family, says Karen.
“We’re the ones having to live with the stress of finding £1,400 every month,” she said.
“I feel let down, he has been our neurologist for the last six years.”
Despite epidiolex working for Murray initially his condition deteriorated to the point that he almost died in 2019.
For three months Karen criminalised herself, travelling to Holland to bring back Bedrolite until she could get access to a private prescription in the UK.
“Our consultant has always said he didn’t want to prescribe it and go against the BPNA (British Paediatric Neurology Association) guidelines and I’ve always accepted it,” she continued.
“But Murray has been seizure free since June last year, so there’s no way I’m not going to take him off it.”
After RESCAS recommended that the treatment of another UK youngster should be continued earlier this year, Karen asked to appeal the decision they had made in regards to Murray.
“It’s not like I emailed him a lot – maybe once every few months,” she said.
“After RESCAS agreed that Billy could stay on his medication I quite rightly asked him to appeal their decision for Murray so I could pursue a shared care agreement.
“All of a sudden I got the letter saying he was resigning due to the strain of the situation.”
Murray will now be taken over by the Complex Epilepsy Team, made up of three neurologists and specialist nursing staff, but he will be left without a named consultant.
Dr Tracey Gillies, Medical Director, NHS Lothian, said: “We are unable to discuss individual patients, but in some cases it may be appropriate for care to be taken over by the Complex Epilepsy team, which is designed specifically for children, and consists of three Neurology consultants along with Specialist nursing staff.”
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