A desperate mother from Much Hoole has helped organise a series of medical cannabis vigils taking place across the country today (Wednesday 16 September).Advertisement
Joanne Griffiths, who is mum to severely epileptic Ben, is overseeing the vigils as part of the End Our Pain campaign, which is working to secure access to medical cannabis under NHS prescription.
A number of affected mothers are holding the vigils outside the offices of the Department of Health and Social Care, the London headquarters of NHS England, the Scottish Parliament and the Welsh Assembly.
The mums say they have found that medical cannabis is the only medicine that works for each of their children. They say they have been left paying thousands of pounds for private prescriptions after being denied NHS prescriptions, even though medical cannabis was legalised in November 2018.
Read more: South Ribble mum blasts hospital after epileptic son denied medicinal cannabis
Since January, the campaigners have been urging Secretary of State for Health and Social Care Matt Hancock to step in and fund the private prescriptions as an interim measure until the NHS starts to prescribe.
The groups says detailed arguments explaining that it is legally and procedurally possible for the Government/NHS to fund the private prescriptions have been provided. Despite this, 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.
The mums say they feel abandoned and desperate, and that the situation has left them broken, emotionally and financially.
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Joanne 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 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 health care systems in the world to help us.”
Read more: South Ribble mum protests at local elections – saying epileptic son is being failed
A spokesperson for 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 MP in Scotland and Vaughan Gething MS in Wales to find a way to make this work in their jurisdictions.”
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What do you think of Joanne’s situation and the campaign? Let us know in the comments.