Karen Gray, mother of young Doose syndrome sufferer Murray Gray, has stated her intentions to go on hunger strike alongside other members of the End Our Pain group to protest against the NHS’s continued lack of prescription of medical cannabis products.
This protest comes as the year anniversary of the U.K law around cannabis prescription being changed is marked– although these changes made back in November have resulted in a disappointing lack of real change for those affected.
Karen Gray currently uses oil derived from the whole cannabis plant for the management of her son Murray’s rare form of epilepsy known as Doose syndrome.
What is Doose Syndrome?
Doose syndrome, otherwise known as Myoclonic Astatic Epilepsy, is a rare form of epilepsy that typically occurs in children aged between 7 months to 6 years old, with the syndrome starting for the majority of sufferers from the ages of 2 to 4.
The syndrome is characterised by seizures including drop attacks (or atonic seizures – where the sufferers’ muscles may become limp often causing them to fall to the ground) and staring seizures (also known as absence seizures – where abnormal electrical activity affects both sides of the brain simultaneously). Atonic seizures are also common in those suffering from other childhood epilepsy syndromes like Dravet syndrome and Lennox-Gastaut syndrome.
Doose syndrome is usually diagnosed through an abnormal EEG (electroencephalogram) reading that shows unusual electrical activity in the brain.
The treatment of Doose syndrome is often very difficult as it is often treatment-resistant when using conventional epilepsy drugs. Interestingly, this syndrome is often mitigated to some extent by adoption of the ketogenic diet. But the adoption of this diet alone is usually not enough to have any notable impact upon the condition.
Why use medical cannabis?
With conventional epilepsy drugs often failing to treat the symptoms of Doose syndrome effectively, many patients and their carers are turning to medical cannabis products for relief.
Ms. Gray began using the combination of THC-constituted Bedrolite and Bedica for her son after the original prescription of the CBD-only drug Epidiolex in August 2018 ceased working effectively after a period of just 3 months, leaving Murray unable to live a normal life.
It was found that medications containing THC worked far more effectively for Murray than CBD treatment alone, allowing him to experience an amazing 140 days seizure free – no mean feat considering the young boy’s previous experience of up to 600 seizures a day.
However, such treatment is expensive with a lack of NHS funding. The vital combination of medicines used by Murray costs Ms. Gray and families like her around £1300 a month – obviously an unsustainable amount for the majority of families affected by such circumstances, with the continued lack of change proving to be a crushing disappointment following the promise of the law reform last year.
Ms. Gray now only has enough money to fund Murray’s treatment for the remainder of the year unless the national health service steps up to provide the prescriptions for treatment many hoped last year’s legislative change would bring.
We contacted Karen Gray to update us on End Our Pain and her own plans to go on hunger strike and she told us that:
‘Our plans to hold a hunger strike have been put on hold due to the impending general election. Ministers cannot, by law, make any decisions during a general election therefore it would be pointless holding the hunger strike during this period. Plans are being made to start the hunger strike after the general election unless funding is put in place immediately to pay for our children’s cannabis oil medications.’
Whilst the possibility of a general election looms and political dramatics command the attention of the population, many epileptic sufferers and their carers still anxiously await NHS access to life-changing medication.
Regardless of the outcome of such an election, the need for the new government to urgently work with the medical field to resolve this impasse remains. The idea that a hunger strike needs to be carried out to elicit change highlights just how ineffective the law change in 2018 has been for those in need.
We can only hope that these drastic measures bring about the changes that many hoped to see a year ago.
For more information on epilepsy and cannabis-based treatments take a look at our evidence base, a ground-breaking systematic review of the history of research in this area and a global first-of-its-kind searchable database for clinical referencing.
The rest of our comprehensive resources on medical cannabis are available on our website. We urge anyone considering the use of medical cannabis products to consult with a trained medical professional prior to beginning use.