Its been a while since I updated our petition. We have been hugely busy as a family, buts time to update you on where we are.

Alfie remains seizure free and has been for over four years. His life is changed, he goes to school every day, and has learnt to read, write and has made some lovely friendships at school. As parents it is all we ever wanted, to give him his best life. 

His prescription, which has been funded by the NHS since 19th June 2018, remains in place and he has benefited so much from this, whilst also saving the NHS over one million pounds in the last four years, from not attending hospital for emergency treatment.

The Conservative Government changed the law on 1st November 2018, we heard from the Home Secretary that children like Alfie were reason the law changed, because it was not good enough for them or for doctors. Since the law change no new prescriptions for children have been issued on the NHS, whilst there is some access privately, this comes at a great cost and some families have spent over £80k in the time since the law changed on private access to this legal medication. The Conservative Government failed every child with rare epilepsy in this country. They had the opportunity many times to do the right thing but they chose not to.

Now we have a new dawn, a Labour Government, with a large majority. We hope this means finally that there will be some help coming for the forgotten children with rare epilepsy, who benefit from medicinal cannabis on prescription. Whilst we may have new hope, we will not give up on this issue, until families are helped with their prescriptions and they can then enjoy their lives with their children, free from the worries of fund raising.

We will be looking to secure help urgently for the children who are currently paying privately, but also to push for innovative ways of researching these exciting medicines so patients with rare disease do not miss out. We also need to see the Government back this new medical sector, which will create jobs and a new economic boost our country so desperately needs. 

We hope now that all children who could benefit from medicinal cannabis on prescription will have the support from the Government which will mean that many doctors will also feel supported to prescribe, something which just has not happened.

Thank you again to each and every one of you for supporting Alfie and our family. We will not give up on all those families like ours who need new treatments for severe epilepsy and who deserve to live happier healthier lives.

With love from

Hannah, Alfie and all our family. 

xxx