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.

Shortcomings of the NHS for Cancer Care

I’m a big fan of the NHS, and very grateful for the treatment I am receiving for my grade 4 secondary metastatic breast cancer. Since being diagnosed I’ve made it my business to learn as much as I can about cancer treatments, both mainstream and complementary, in the UK and elsewhere in the world.  What I’ve learned has opened my eyes. We like to think of the NHS as a National Treasure. Best healthcare system in the world. 

Every advanced economy in the world except for the USA has a universal healthcare system. That’s more than 30 countries. They differ in the drugs, treatments and therapies they fund, but all have something in common. Their cancer survival results are strikingly superior to the NHS.

This winter especially we’ve all read about the long waits in A&E, cancelled operations, and staff shortages. And now the government has plans to increase funding, perhaps with a designated NHS tax. Good! Because we’ve been underfunding our health service for many years. We currently spend 9.1% of GDP on healthcare, while the EU average is 10.1%. We’re far behind the Netherlands, (12.9% of GDP), France 11.75% and Germany 11.3%. 

Our poor spending record shows up in our survival rates for cancer.  You might expect us to be world leaders, given all the excellent research we do. But we are at the bottom, not the top, of league tables for cancer survival. 

According to a UK 2020 report, The UK Health System – An International Comparison of Health Outcomes, in breast cancer the UK ranks 23rd in the world for five-year survival. Sweden is the best country, and if UK performed to Swedish standards it would save 4,242 lives a year.

Why do other countries do so much better than us, when the same treatments and drugs are available to all? Partly it is down to what is authorised for access under the healthcare system in each country. In the UK NICE controls the purse strings, and sometimes effective drugs are not permitted on the NHS which would be available to patients in other countries. Additionally, I have come to believe that the medical establishment in the UK is too narrow in its view of what is appropriate treatment. Unless there is a sufficiently robust evidence base, NHS doctors will not endorse treatments, drugs or therapies outside of their approved protocol. So, what is sufficient evidence? Randomised controlled tests are the currency acceptable to the NHS establishment. Fair enough, but there are many, many approaches where this level of evidence is not possible. And rather than remaining neutral about them, most NHS doctors will at best caution their cancer patients and at worst actively discourage their patients from trying them.

If the NHS protocols produced outstanding results this might be acceptable. But the standard approaches of surgery, chemotherapy and radiation followed by extremely sophisticated and expensive big pharma developed drugs are quite simply not good enough. At least for late stage cancer. They may be lifesaving and the best option in the short term despite the often-horrendous side effects, but the extraordinarily expensive drugs are not expected to provide a lasting solution. They last on average a few months until the cancer finds a way to outfox them. Now a few extra months when you are told that you are not expected to live for much longer is very welcome, but wouldn’t it be better to also use other approaches which might make things more difficult for the cancer and thus prolong life, even if not actually providing a cure?

In future, advances such as immunotherapy and individualised treatments may provide much better outcomes. But for now, there are many things which terminal cancer patients can usefully do which might buy them additional, precious quality time. These range from adjunct drugs which are licensed for other conditions but have beneficial actions in cancer to supplements, diet changes, medicinal cannabis, homeopathic remedies and alternative treatments such as acupuncture, reflexology or Reiki. Most of these will not make the cancer disappear, but they may enhance the effectiveness of the mainstream treatments, alleviate the nasty side effects, make conditions more difficult for cancer to thrive, strengthen the immune system to better deal with new cancer development and generally help the patient to feel better both physically and mentally, which has a beneficial systemic effect in the body. 

These complementary and alternative treatments are not easily testable in randomised controlled tests. Off patent drugs have no profit motivation for further research by big pharma companies. Terminal cancer patients don’t have time to try one treatment alone and wait to see if it works before trying another. How would you provide reliable evidence for diet, apart from case studies? And for cannabis, which is still illegal in the UK?

So, the medical establishment doesn’t provide guidance on any of them and it is up to the patients to do their own research. 

There must be a better way. We need a way to evaluate these integrated oncology options so that the medical establishment can either endorse them or at least stop being negative about them. 

I would like to explore opinion from people in different parts of the system to see what they think works now, what doesn’t work and potential ways forward to get better outcomes. I’ll write these up as blogs over time on this website. If I am successful in confounding medical expectations about how long I can expect to live, especially now that I have brain metastases, I may even be able to collate all the results into a second book. Watch this space!