Broadening the range of treatments for patients with secondary cancer

Today the NHS is 70 years old. And Parliament is going to review the guidelines on medical cannabis.

Lots of debates to be had about how good the NHS is, where it fails and how to spend the additional funding of £20bn recently announced. While I am benefiting from excellent care and expensive treatments from the NHS I want to focus on what more can be done additionally to help late stage cancer patients like me to have symptom relief or life extending treatments in addition to those they can access through their oncologists. Because we know that the UK lags behind almost all advanced economies in the 5-year survival rates for cancer. For breast cancer the UK results rank 23rd in the world.

The NHS provides no guidance on these complementary and adjunct drugs and therapies. Worse, in many cases the doctors and oncologists actively put people off trying them. The argument is that there is no evidence that X or Y will work for cancer patients.

It is understandable that GPs and oncologists will err on the side of caution. They don’t want to give false hope. They have no knowledge of the treatments (or curiosity it seems!) They might fear litigation. They prefer to deal with drugs and treatments where they have knowledge and control. And they don’t like their authority being challenged.

So, the question is: what counts as acceptable evidence? Randomised Control Testing (RCT) of drugs, funded by the pharmaceutical companies is the gold standard that the medical profession will accept. But for many practical and financial reasons it isn’t possible to do this kind of testing on cannabis, curcumin, repurposed drugs such as aspirin and metformin, diet or mindfulness meditation, to name but a few.

Sometimes stories can trump data and capture the public imagination. This is what has happened recently with the media coverage of the cases of Billy Caldwell and Alfie Dingley where their epileptic seizures were shown to be massively reduced by cannabis oil. Is this evidence? Obviously, evidence in these cases, but how widely will our legislators open the goal posts for medical cannabis for other conditions, such as MS, Parkinson’s or Cancer?

Absence of evidence is not the same as evidence of absence of effectiveness.

Unfortunately for now there is not much between the narrow NICE review of evidence and cost effectiveness, and the plethora of anecdotal stories, documented case studies and the large number of self help information groups, such as closed groups on Facebook. How are patients to wade through and evaluate all this information, sifting through the suppliers of supplements and regimes promoted on YouTube, some of which are excellent, and some are questionable.

A number of organisations are actively trying to promote integrated oncology, through conferences, interviews, books etc. These include Yes to Life, College of Medicine, CANCERactive and the British Society for Integrative Oncology (BSIO). Excellent stuff, but while there is great consensus at their conferences they don’t seem to be having any meaningful traction in broadening the NHS view on what they might sanction for their patients, so that they might stand a chance of living a bit longer and managing their cancer as a chronic disease. Why not? I don’t know, but I suspect it is due to a combination of factors. Amongst the different organisations no one body takes the lead – nobody is driving the bus and the individual voices are less strong than a united front with an activist agenda. MPs are heavily reliant on doctors to advise on any changes, and the medical profession is heavily influenced by the pharmaceutical companies. While I don’t believe that all Big Pharma is wicked, it’s certainly true that it is not in their commercial interests to support investigation into off-licence drugs which seem to have good effect in tackling cancer. (Off-licence doesn’t mean they are illegal – simply that they have a licence for one condition such as diabetes, but did not go through RCTs for cancer, so while there may be epidemiological evidence of effectiveness this is not “evidence” the NHS will accept.)

Where are the voices of other parts of the medical world and patients themselves? Hospices, palliative care specialists and nurses all may have a broader view of what is helpful, based on what they see helps patients.

I don’t expect any of the complementary drugs and therapies that I use to cure me of cancer. But if I want to live longer than the NHS drugs normally achieve I need to look outside their protocol. I hope to live long enough to take advantage of the emerging approaches of individual treatments, based on DNA profiling of the patient’s tumours.

If medical cannabis becomes available on the NHS, then the basis of what counts as acceptable evidence will have been challenged. It is my hope that this will lead to other drugs and treatments being investigated – they won’t need a change in the law, but permission for oncologists to recommend trying them or at least not discouraging patients from trying them would be a big step forward.

It is my view that the kind of culture change necessary in the NHS would take a generation to achieve. I would like to see an authoritative body to be set up, equivalent in status to NICE, which can firstly propose ground rules for what can count as evidence and then go on to investigate the very many options available to cancer patients. Particularly late stage patients, who might then have a realistic chance of living longer.