November is epilepsy awareness month and also the month that the law was changed to allow medicinal cannabis to be prescribed.
Team INTRACTABLE Epilepsy held an event in Parliament to spread awareness of our existence as a fully registered charity.
So many fantastic MPs came along to support us. You can see our full list of supporters HERE
So why did the charity commission give us charitable status?
The simple answer is because families can only access this medication via private clinics and when prescribed by a clinician on the specialist register. Very few have successfully obtained an NHS prescription leaving families to self-fund their medicine.
So, what does that mean for families?
It means they must find up to two thousand pounds every month to make sure they have a continued supply of medication.
What happens if they cannot find the money?
As everyone is aware the cost of living has hit everyone hard but for these families it came four years ago. It was soon apparent that NHS prescriptions were not flowing. For many children who were already reliant on medicinal cannabis to control their seizures, this came as a huge blow. Some families have run out of savings, homes to sell, and the good will of others and have seen their children's seizures increase dramatically, some children needing intensive care. Once they obtain enough money to pay for their medicine again, they are able to return home safe and well.
The charity was foundered by families, to give "relief of sickness and the preservation and protection of good health" particularly for children with intractable epilepsy.
We need as many supporters as possible to spread the word about this vital charity. Only with your help and support will we be able to give a child their life back!
Team INTRACTABLE also attended the Drug Science and MedCan Support, UK patient conference on the 4th of November.
Our Treasurer Emily, spoke emotionally of her own personal experiences to raise awareness of the dangers for children with epilepsy, why families need accessible specialists and a safe supply of medication.
We saw a huge support shown for the charity. We have been invited to some of the facilities and offered charitable help from some of the companies.
We met some fantastic people and were all moved by Dr Jennifer Anderson and the documentary "Anything Can Happen". We are thrilled that she has agreed to be on our expert advisory panel.
Team Intractable want to thank You all for your continued support and donations.
Together we can give children their lives back!