Almost 30 members have signed a letter asking the Health Secretary Matt Hancock to offer ‘emergency funding’ to sufferers across the country. The law was changed in November 2018 to allow access to medical cannabis under prescription, after children such as Alfie Dingley and Billy Caldwell captured the nation’s heart. But since then very few patients have been given access to the medicine on the NHS, after strict guidance was implemented making the process more difficult.
Some NHS Trusts have refused to prescribe full plant cannabis medicine, which contains both THC and CBD, rather offering Epidiolex, which only has CBD and does not give the same results.
Families have instead been forced to go private, paying up to £2,500 a month for prescriptions to import the drug, inflicting a massive financial toll.
Many children receiving medical cannabis have seen clear results, with some being seizure-free for up to 18 months.
Now, the Department for Health has said they will not move forward based on this evidence, known as an ‘observational study’, instead saying randomised controlled clinical trials must take place before the NHS will roll it out.
This process could take years, leaving families with the crippling cost in the meantime.
In Northern Ireland Billy Caldwell was last week awarded a lifelong medical cannabis prescription on the NHS.
Some 27 MPs have now signed a letter asking Matt Hancock to help pay for the drug to ensure parity with Belfast.
Co-chair of the APPG on Medical Cannabis Mike Penning wrote in the letter to Mr Hancock: “Paying privately costs the families thousands of pounds a month. We imagine that your decision would have been based on internal advice that such a move was not possible.
“However, we are aware that the Health & Social Care of Northern Ireland appear to have found a way to grant funding of this kind for a high-profile case there. We hope you will agree that if such a move is possible in one part of the United Kingdom, it ought to be possible in the other nations too.”
Murray Gray, 8, from Edinburgh, was diagnosed with an extreme form of epilepsy in 2017 and caused him to have fits multiple times each day, almost costing him his life.
They were given legal permission to buy drugs Bedrolyte and Bedica from abroad in 2018, but it is costing his family £1,400 each month
His mother Karen, 46, said: “There is clear evidence that these drugs work, Murray has been completely seizure free for 17 months.
“The difference is unbelievable, he goes to school full time now, he no longer needs a wheelchair, he doesn’t need to wear a helmet, he is running around like every child should.
“There shouldn’t need to be a trial to test if Murray should get it, we know it helps him.”
Although family and friends have been generous in helping support families across the country, Covid-19 has put a stop to any large scale fundraising, increasing the pressure.
Elaine Levy, from Mill Hill, north London, has sold her house to continue paying for her adult daughter Fallon’s treatment, which costs £2,200 a month.
Fallon, 26, started taking the same drugs in 2018, and has seen a dramatic drop in the number of seizures she has.
“The drugs she was on before made Fallon dopey, like she was stoned. Once she started taking this she began to wake up, her IQ has gone up, we don’t need to cut her food any more, and she can walk and talk. She is like a different person.
“I don’t like asking for money, it isn’t in my nature, but family and friends have been so generous. In the end I sold my house as I just couldn’t see how we were going to pay for it.
“This is about cost. My doctor has even confirmed to me that if it was £5 a bottle there would be no problem. The idea that it is about safety is just smoke and mirrors.”
The Government claims there is little evidence for medical cannabis, and that further tests must be done to ensure it is safe enough to provide on the NHS.
Edward Argar, minister for health and social care, said: “The best course of action is to develop evidence via safe and robust clinical trials supported by the National Institute of Health Research (NIHR).
“A programme of two randomised controlled clinical trials are being developed by the NIHR. These trials will be critical in ensuring that evidence for cannabis-based medicinal products can be developed to plan future National Health Service commissioning decisions for the many hundreds of patients in the United Kingdom with refractory epilepsy. Industry also needs to step up and invest in robust clinical trials to improve understanding of how patients might benefit from these products.”