A surprisingly good meeting with my MP

I met my new (to me) MP, Jeremy Quin this afternoon.

I had emailed him off the back of a change.org petition about Alfie Dingley, a six-year-old boy who has around 30 seizures per day but had 27 days free from seizures when his parents took him to the Netherlands and he could access medical cannabis. They want to have a special licence to enable Alfie to get this here, but our rules say he can’t.

I sent the change.org suggested letter and prefaced it with some information about my interest in this as a person with terminal cancer. He replied with the expected outline of the status quo. Cannabis is not recognised in the UK s having any medicinal benefits, products must be thoroughly tested by the Medicines and Healthcare Products Regulatory Agency before they could be made available for medicinal use, so the Government would not issue licences for the personal consumption of cannabis.

I wasn’t expecting a positive response to what I wanted to tell him. This problem is wider than just cannabis – there is no recognised authority to say that any off licence, complementary or alternative treatment approaches, diet or supplements may be beneficial for cancer treatment.

It was news to Jeremy that there was lots of evidence that cannabis oil with THC kills cancer cells. And that off licence drugs such as those prescribed by the Care Oncology Clinic, or even aspirin, can make conditions tougher for cancer and so prolong life and perhaps enhance the effectiveness of chemo or ameliorate the side effects.

He told me that MPs are very dependent on what NHS medics tell them, as MPs themselves lack specialist knowledge. They are told that (except for Sativa, the one licensed drug) there is no evidence that cannabis is effective medically.

So what is evidence? The NHS currency is randomised controlled tests (RCT). Exceedingly expensive and normally funded by the big pharma company in their quest to find innovative profitable drugs. There is no commercial advantage for any organisation to do the research into drugs which are out of patent, and how could you provide RCT evidence for diet or cannabis?

He already knew that our performance for cancer survival is poor compared to other advanced countries, but he was genuinely surprised that epidemiological evidence exists for non-NHS treatments. He was very interested in whether my medical team supported my complementary treatments (they do, but most NHS oncologists are very constrained in what they can say outside of the usual protocol, and instead of being neutral they are often actively dismissive or hostile). He was interested as to how medical cannabis could be legalised without risking legitimising other forms of cannabis and increasing the risk of side-effects. Medical cannabis is, of course, a long way from street skunk and it would be easy to put in place adequate checks and balances.

He has undertaken to contact two MPs who have an interest and good knowledge in this area and agreed to do so with an open-mind. He feels that if the NHS is wrong in their approach things need to change. My view is that it would take far too long to bring about any change from within the NHS. What we need is a parallel body for integrated oncology, providing authoritative information about drugs and other treatments, and developing a framework for good evidence that isn’t RCT.

Let’s see what happens.