A number of mothers, each with a severely epileptic child, are today holding a vigil outside the offices of the Department of Health & Social Care, the London headquarters of NHSE, the Scottish Parliament, and the Welsh Assembly.
The mothers are protesting as medical cannabis is the only medication that works for managing their children’s symptoms but they have been denied NHS prescriptions despite medical cannabis being legalised in November 2018.
No help for families
Private prescriptions, which can cost thousands of pounds, are the only option available to the families, which are unable to obtain medical cannabis through the NHS. The UK Government has told them that it will not offer financial support, despite the devolved administration in Northern Ireland recently stepping in to supporting a family there.
A spokesman for the End Our Pain Campaign said: “Everyone involved from the Government and NHS side says they want to help, but the months drag on and these families have not had any help. Some of the doctors in the leading medical professional bodies constantly say that they want more evidence that medical cannabis works and is safe. What they fail to acknowledge is that these families have got the best evidence of all that it works for their child.
“They have been securing and administering it for months now with dramatic improvements in their children’s wellbeing. Some of the children have gone from being exceptionally ill to going a year seizure free. Given what appears to have happened in Northern Ireland we are pleading with Matt Hancock and the health ministers Jeane Freeman MSP in Scotland and Vaughan Gething MS in Wales to find a way to make this work in their jurisdictions.”
Access to medical cannabis
Campaigners have been urging Matt Hancock since January to step in and fund the private prescriptions as an interim measure until the NHS starts to prescribe. Despite detailed arguments explaining that it is legally and procedurally possible for the Government or the NHS to step in and fund the private prescriptions, including an opinion from a Quality Commission, the Government wrote to the co-chairs of the All Party Parliamentary Group (APPG) on Access to Medical Cannabis Under Prescription stating that they would not step in.
Joanne Griffiths, the mother of a severely epileptic son and spokeswoman for the mothers, said: “We have been passed from pillar to post for nearly two years now since the law was changed in November 2018 to allow medical cannabis to be prescribed. The situation is a complete mess. The Secretary of State, the NHS and the leading doctors are all standing by and watching us have to fundraise thousands of pounds to secure access to the only medicine that helps our children.
“Everyone involved just seems to blame everyone else. Caring for a very ill child is incredibly tough in its own right. To have to fundraise thousands on top of that is intolerable and then we’ve had to cope with the COVID-19 restrictions on our fundraising.
“In desperation, we asked Matt Hancock to find a way to use Government and/or NHS money to fund our private prescriptions until the NHS sorts itself out. The Government has said no, and then we hear media reports that the devolved administration in Northern Ireland appears to have stepped in to help pay for medical cannabis for a family there. If it can be done in one part of the United Kingdom, it can be done in others too. Surely it can’t be beyond the wit and will of one of the most advanced public healthcare systems in the world to help us.”
Mother, Elaine Levy, added: “We are broken, emotionally and now financially. The sums of money involved are minuscule when set against the overall health budget, but for our children it is about life and death. This can be sorted at the stroke of a pen. That it is feasible for the Government to help us in this way is proven by what appears to have happened in Northern Ireland.”