We spoke to Tannine Montgomery about her daughter Indie, who suffers from Dravet syndrome, a rare form of epilepsy. Because of this disease, Indie had trouble walking and showed cognitive impairments – no medicine proved effective at anything other than turning her into a ‘zombie’. About a year ago, Tannine attempted what seemed to be the last resort and decided to go to Holland and try whole-plant cannabis oil. After consulting doctors, who agreed with her, Tannine started raising money for treatment, getting between £8,000 and £10,000.
Indie’s condition improved with cannabis
After 6 months of fundraising, in August 2018 they left the UK and went to the Netherlands where they managed to get a prescription from the Erasmus Hospital in Rotterdam. Even travelling from the UK to Holland proved to be a quite difficult journey. Since patients with epilepsy are not allowed to fly within 24 hours of a seizure and indie rarely went a day without a seizure, they had to omit this fact to even get her on board. After three weeks using Bedrolite a high CBD medical cannabis, Indie was already improving. In the same period, in the UK, Health Secretary Jeremy Hunt announced his support for the medical use of cannabis and that a review would be undertaken to study changes to the law (20th June 2018) and Home Secretary Sajid Javid announced that cannabis products would be made legal for patients with an “exceptional clinical need” (26th July 2018).
UK doctors are reluctant to prescribe
Therefore they asked their doctor to make an application and get them a special licence from the Home Office in order to import Bedrolite and Bedica by Bedrocan, which were part of the treatment prescribed to Indie in Holland. They worked on this application for 4-5 weeks, along with the physicians following Indie’s case, including Professor Mike Barnes. Yet, to sustain Indie’s treatment in the meantime, the family had to fly back and forth importing thousands of pounds worth of cannabis oil, technically illegally.
Epidiolex is prescribed more but patients are sceptical
When finally in October they managed to get this licence, then they needed a prescription from a neurologist. Unfortunately, the doctor would not prescribe Bedrolite and Bedica despite the visible improvements. In his report, published by Tannine on Twitter, he writes as follows: “I am duty bound to follow the guidance of Paediatric Neurologists and my Medical Director, and so regrettably cannot prescribe these medications”. The option suggested was Epidiolex, which contains only a single cannabinoid extract. While the Bedrocan products contain a range of whole plant produced cannabinoids.
The joined efficacy of the full range of cannabinoids proved highly beneficial. This positive interaction, known as the entourage effect, come as the result of the synergistic value of multiple cannabinoids together, more efficacious than a single one in isolation. For this reason, Tannine refused to change her daughter’s medications and switch to Epidiolex. And rightly so, given the visible improvements: Indie suffered from terrible insomnia and panic attacks which were harder to manage than a seizure. After Bedrolite she was able to run – this month she has only had four seizures and there is a possibility that these could go down to zero, if she continues the treatment. The same day we heard from Tannine, they were out for a day at the Zoo, an experience which would have been impossible a few months ago.
4 tonic clonics this month.— Indies fight for a flower (@TannineM) February 27, 2019
Which is a place I never thought we would be. Without cannabis #indie was having 18-22 a month.
We have had again no panic attacks this month.😊 @MattHancock
But I’m still a criminal #endourpain #westandtogether pic.twitter.com/uE7pQFCZsf
Cannabis may be technically legal but for patients like Indie there is still a long way to go
Unfortunately, problems are not over: since the UK approved medical use of cannabis on November 1st, allowing doctors to prescribe, the temporary licences granted by the Home Office were revoked, leaving patients in limbo. Discussion, therefore, is still going on and the issue has been raised again a few days ago by Tonia Antoniazzi MP, Welsh Labour Party. In the meantime, Indie’s family is liable to face prosecution and has to self-fund the £22,000-a-year treatment, without any help from the Government.
Tannine is not a criminal, and seeking medication for her daughter should not be considered a crime. The government should be supporting her by paying for these medicines – instead they are doing the very opposite!