In the latest example that suggests specialist doctors are unlikely to make life any easier for UK patients seeking medicinal cannabis, Caroline Burns, a former council worker and mum who is fighting brain cancer, has appealed directly to the Home Secretary after she was denied making an application to the ‘expert panel’.
Caroline says cannabis has extended her life after being told that she had three months to live – three years later her tumour has shrunk by 26%. However, the cost of importing it from Canada amounts to at least £1,000 a month.
When Caroline asked doctors to forward her application to the expert panel they refused. Her oncologists at Glasgow’s Beatson cancer centre said there was no published evidence of the benefits of cannabis, too many uncertainties over cannabis-based products, and no official guidelines about how it should be taken. So she has written to the Home Secretary, Sajid Javid.
Other patients across Britain have said that applications are being refused or obstructed because clinicians and health authorities are unwilling to recommend the use of medicinal cannabis, and because the panel’s criteria are too strict. For example, the case of Eddie Braun, a three-year old who suffers with severe epilepsy, has been denied the right to apply by his neurologist.
Eddie Braun and mum Ilmarie
Caroline, 35, told the Sunday Post: “I find myself writing to the Home Secretary pleading for my life. When the expert panel was announced, it gave me real hope. However, if doctors do not feel able to refer patients to the panel, it means nothing.
“We have been promised medicinal cannabis and when we try to put it into practice we are denied. It’s a sham. All I ask is that I am kept alive to see my son Jack grow up.
“If the Home Secretary meant the panel to have any significance, he needs to prove it.”
Newcastle neurologist Professor Mike Barnes said doctors were reluctant to make referrals to the panel: “Many patients who need it are not able to get their specialists to forward proposals. It is difficult for people like Caroline, who are pioneers in using medicinal cannabis. I am launching an academy of medicinal cannabis in November to offer training to doctors.”
Caroline’s letter to the Home Secretary reads:
Dear Home Secretary,
I am a brain tumour patient who is being kept alive by medicinal cannabis. Your promise to allow patients medicinal cannabis, when they desperately need it for a medical condition, was welcomed by many people like me.
However, my application for medicinal cannabis has not been forwarded to the expert panel because I cannot get two senior clinicians to endorse it. It is heartbreaking to be told that I cannot be considered because the right protocols have not been put in place.
Since taking a laboratory-tested THC version of cannabis in 2015, my scans have improved. My tumour has stabilised instead of the expected growth. I am still alive and here for my husband, Gary, and son, Jack.
I am still alive three years after being given less than a year. The median survival rates and life expectancy for a glioblastoma brain tumour patient is 15 to 16 months for people who get surgery, chemotherapy and radiation treatment. I was unable to complete more than one session of chemotherapy because of adverse side effects.
My medicinal cannabis is taken with Sativex, the medicinal cannabis drug, which is prescribed privately. These are the only drugs I take. Medicinal cannabis is costing me £1,000 a month to import from Canada. As you can imagine, this is a considerable burden on my family but it is the price of staying alive.
A previous application for medicinal cannabis, under the European Medicines Agency’s compassionate use/named person scheme, was also refused.
Can you assist please, by putting into place a way for doctors to prescribe me medicinal cannabis?