The families of the campaign End Our Pain have written an open letter to the Prime Minister Boris Johnson to ask for his support with cannabis-based medicine prescriptions.
The campaigners, alongside Epilepsy Action, have been calling on the government to deliver on promises made two years ago around increasing access to cannabis-based medicines for those who need it.
In November 2018, it became legal for specialists to prescribe cannabis-based medicines to those with “exceptional clinical need”. However, since then, only three prescriptions for medicines containing cannabidiol (CBD) and tetrahydrocannabinol (THC) have been made, according to End Our Pain. CBD and THC are both parts of the cannabis plant, but THC is associated with the part of the plant that causes the feeling of a ‘high’.
The open letter, supported by Epilepsy Action, sets out many concerns and challenges families with children with severe epilepsies are facing in trying to source this medicine.
They also lay out why randomised controlled trials (RCTs) into these medicines might not be appropriate for all. Children already taking cannabis-based medicines would have to come off their medicine in order to take part in the RCTs and may be placed on a dummy drug during the trial. This is a risk many families don’t want to take.
“The financial and emotional pressure of the last two years is pushing our families to the edge of ruin,” the families write in the letter.
End Our Pain and Epilepsy Action are asking the government to provide financial support or provide alternative access to cannabis-based medicines through the NHS as a matter of urgency.
The organisations are also asking for the government to honour previous commitments to an ‘alternative study’ which would allow more people to take part. They stress that these trials and studies are needed urgently and should be undertaken as soon as possible.
Epilepsy Action deputy chief executive Simon Wigglesworth said: “We urge the Prime Minister to end the suffering of these families and work with them and MPs towards the same goal. There must be a way to access this treatment on the NHS for children with severe epilepsy. For many it is a treatment that is already reducing their seizures – something that they feel finally works for their child, after exhausting all other options. Their calls for change have gone on long enough. They have already waited for two years. They cannot afford to wait any longer.”
You can send an autofill email to your MP asking them to contact the Prime Minister and urge him to act on this vital issue from the End Our Pain website.
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The families of children with severe epilepsy and epilepsy charities are pleading with the UK government to act on promises made two years ago around access to cannabis-based medicines.