Intractable Epilepsy destroys lives, and it is our mission to make these lives better both medically and financially, for the sufferers and their families.

Full Extract Medicinal Cannabis can work where Pharmaceutical treatment has failed, although legalised in 2018 it is not yet fully available on the NHS. Assisting with the cost of private prescriptions from Neurologists is one way we can assist the families of these sufferers.

Until such a time when Full Extract Medicinal Cannabis Oil for the treatment of drug resistant epilepsy is available on the NHS, the Charitable Company ‘INTRACTABLE’ will aim to raise funds to pay for Private Prescriptions for those who qualify.

Medicinal Cannabis Oil was legalised in the UK in November 2018

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Joanne Griffiths

My name is Joanne Griffiths, and my son has intractable epilepsy. Over the past twelve years we have tried over 12 epilepsy medications some twice and the ketogenic diet, all failed to help and even surgery was not an option. In 2014 we found out about CBD oil, but my son did not meet the criteria for the NHS trials, we asked again in 2016 and we got told we could not yet access this treatment. So that meant we had to self-fund this treatment ourselves. I have been campaigning since early 2018 for NHS access to cannabis oils and joined the campaign group “End Our Pain” in early 2019, later becoming a parent spokesperson.

My son has had a private prescription since April 2019 for a full extract medical cannabis oil, which has transformed his life. However, we were unable to enjoy these moments of joy with our son as we had to constantly fundraise to give him that quality of life.

Therefore, me and few other parents have set up the charity INTRACTABLE EPILEPSY, to help families like us. I hope this charity will help educate people with Intractable Epilepsy to other options available to them and give some financial relief to those that are struggling to meet the cost of private epilepsy treatments.

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Karen Gray

My name is Karen Gray, and my son has Doose Syndrome (intractable epilepsy).

Murray started having seizures when he was 2 years old. They gradually became worse over the next 3 years. By January 2018 he was having many tonic clonic seizures each day and ended up in non convulsive status epilepticus (in other words he lay in a hospital bed in a vegetative state unable to move, talk or eat). Murray was put on many medications over the course of a year that did not help stop the seizures. He was now also suffering from drop seizures, myoclonic seizures and absences - 100s of seizures every day!

It was at this point I started to research cannabis oils as a suitable medication.

In March 2018 I started a petition to access medical cannabis through the NHS. Over 200,000 signatures were added to the petition then I hand delivered it to Downing Street. The law changed in November 2018 to allow clinicians to prescribe cannabis oils, however no clinicians are willing to do so due to no clinical trials taking place in the U.K.

In March 2019 Murray had been in status for 3 months and was terribly ill as his breathing had started to decline. We thought we were going to lose him. I begged the doctors to prescribe Bedrolite, a dutch cannabis oil that was already being prescribed to two children in the U.K. however the doctors refused. I decided to go to Holland and found a Dutch doctor who was willing to prescribe the oil. Over the course of a very stressful 3 months (illegally bringing cannabis oil into the U.K., Murray started to get better. Fast forward to today, Murray takes Bedrolite and Bedica (added THC) and he has been seizure free since June 2019.

Cannabis oils are now available privately which cost a lot of money. Many of us fundraise to be able to pay the vast cost each month. This is why we have set up the charity “Intractable”. We want to be able to help fund the costs of these life saving cannabis oils.

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Graham Levy

My name is Graham Levy and my wife is Elaine. Together we have 3 children with Fallon (second child) suffering from Lennox Gastaut Syndrome (LGS),which is a form of Intractable Epilepsy.

4 years ago we came across a story about Medicinal Cannabis , and as no pharmaceutical treatments had ever worked we decided to try.

Fallon has had a 90% reduction in seizures since then.

It was legalised in 2018 and it helps the suffers live a more normal life, but it cripples the families with a private prescription cost of over £2,000 a month. It is not yet available on the NHS, and therefore a charity has been established by some of the campaign group to assist with the costs.

I am urging the families to stay strong, I am urging the government to help clear the funding blockage, and I am urging anyone who will listen (individual and corporate) to give generously to a worthwhile cause.

Intractable Epilepsy destroys lives, and it is our mission to make these lives better both medically and financially.