Around 30,000 children in the UK suffer from daily, often life-threatening seizures, that cannot be controlled by standard medications. Clinical studies show medicines derived from cannabis to be extremely effective in reducing their seizures, with few or no side effects. That’s why, in 2018, the government allowed specialists to prescribe these medications to children where other options had failed: a lifeline to them and their families.
But four years later the NHS is still not issuing those prescriptions—meaning that lifeline is only available to those who can access it privately.
Medcan is a non-profit organization run by parents of children with drug-resistant epilepsy. We work in collaboration with international and UK clinicians, researchers, and academics to provide science-based evidence to educate, support and empower families coping with childhood epilepsy, childhood cancer and other neurological conditions. We believe that access to prescription cannabis should be available to all children who need it to control their chronic illness, via the NHS.
ACCESS: Patients who depend on cannabis-based medicine should be able to get the essential treatment and care they require, without delay, and on the NHS. Campaigning for this is at the heart of what we do
FUNDING: The struggle to pay for the medicine needed to keep their child well leaves many families unable to cover basic living costs. MedCan sets aside a share of all the money we raise to provide hardship grants and high-street vouchers
AMNESTY: No judgement. Without NHS access, many families have resorted to poorly regulated over-the-counter products, or even the illicit market. It is vital these families are able to talk frankly to doctors. Through education, MedCan aim to create greater understanding between the patient and clinical communities to ensure no family is left in fear of stigma or exclusion
DATA: High-quality care requires high-quality data. But the complexity of the situation and the cost of clinal trials makes that hard. MedCan are at the forefront of gathering in-depth, robust data on medicinal cannabis use and efficacy
Emma's Story. Four years ago my son developed epilepsy. After two years of cognitive decline and worsening seizures, Great Ormond Street Hospital informed me that there was nothing more they could do. But unbelievably, he has now been seizure free for 2 years; we managed to get a prescription for a cannabis-based medicine overseas. It has been life-changing for us both. During my darkest hours, it was Medcan that kept me strong and gave me the hope to carry on. Without their support Louis would not be well and thriving today. All this has now been jeopardized though, as the NHS have again refused to fund his prescription, even after acknowledging it is necessary to control his epilepsy. There is a very real possibility we won’t be able to raise enough money to pay to continue. This is threatening to cast us back to the lowest point in our lives, when my son was in hospital seizing all night for weeks at a time.
Amy's Story. My 17-year-old daughter was diagnosed with epilepsy as a baby. After many years of trying different medications, we decided to try medical cannabis. Starting any new course of treatment is nerve-wracking, but cannabis-based medication especially so, because there is so little understanding and knowledge within the health industry. But because Medcan was able to support us, answer our many questions, and connect us to others in a similar situation, we felt empowered to try. This has helped our daughter tremendously; reducing her seizures, improving her sleep, and alleviating her debilitating headaches and nausea.
Anja’s Story. At her request, we have changed Anja’s name. Anja’s daughter began having seizures as a baby and was diagnosed with a condition called Infantile Spasms. Despite doctors doing all they could, the seizures could not be controlled. She stopped smiling and babbling. She only moved when having seizures. Desperate at watching her little girl decline, Anja tried an oil she had read about online called CBD. It is a cannabis-derived compound known to help with epilepsy, but that does not cause a ‘high’. Since then her daughter has improved dramatically. She is smiling again and going to physiotherapy. Her family is hopeful she will soon walk. Although the oil Anja is giving her daughter is legal, she is too frightened to tell doctors about it. Nor has she told her family, as she doesn’t think they will understand the difference between this lifesaving, safe treatment and street cannabis. If there was any way Anja could obtain a prescription - to overcome that stigma - she would, but the NHS won’t prescribe it and she cannot afford to see a private doctor.
As part of our commitment to providing high-quality information MedCan Support work alongside and provide research to industry-leading and national organisations.
You can help us
Medcan is run by a small but committed team of volunteers, but we have reached a point where we need to employ a member of staff so that we can expand and help the growing number of families who seek our support and advice. Next year we have many initiatives we would like to launch, all designed to give greater voice to children unable to access the life-saving medications they need. In supporting us you are supporting them.
Please help us by contributing to this Crowdfunder campaign, following us on social media, and spreading awareness about the work we do, and the vital, life-changing education, research and advocacy we provide.