Regular readers will know that after something of a nudge I was offered (perhaps here read coerced into being offered) a place to attend the War on Cancer event in London run by The Economist. It was the last in a series of events they have run discussing cancer & Cancer treatments & this one deemed to reflect “a Patients Journey”.
The location was a brilliant choice – the Honorable Artilary Company head quarters in London. Very symbolic! The timing brutal – when you are a mere patient with no travel grant available to you & you don’t believe it is morally right to use your organisations funds to provide accommodation in central London, it means a 5am start & frankly that hurt.
The room filled to capacity with hundreds of Pharma representatives, governmental & industry institution representatives, journalists, owners of Bio/Medical companies…it was much more of a networking & business opportunity than a genuine game changer. Of the 16 or so speakers – 4 were patients. In the audience, there were perhaps another 3. It wasn’t really for patients as much as about them. I felt very much the lone fish…apart from a journalist I already knew who is a huge advocate for patients (Anna Wagstaff) and the lady who I was sat next to from the BNJ, I felt very irrelevant.
There were excellent speakers – some with really very valid points…I had a good amount to share on Facebook & Twitter that stoked my fire….although many of the panel discussions also included the token Sales & Marketing rep from a sponsor organisation touting their own companies tale!
For all the other people in that room…as it is for the oncologists that treat us on a daily basis, it was business as usual.
For me…as a patient…it was a crying shame…. (But then, maybe that’s why I wasn’t “supposed to be there”!)
Here in this room were those who do actually have power & influence. On stage being interviewed for over 45 minutes was Simon Stevens CEO of NHS England. However, even he was clearly there for marketing & perfectly timed PR. The same day as the conference NHS England also announced a national initiative to target Smokers & improve early diagnosis.
Don’t get me wrong., I think placing Early Diagnosis high on the agenda for national activities is an extremely important initiative & one that so many patients in the UK really would welcome.
My concern is two-fold…no make that three-fold….and I’m afraid dear reader it involves one of those lovely soapbox moments…(sorry!)
Firstly…a lot of what was said was all talk no trousers (Which seems wrong to say when talking about such an esteemed & highly important chap such as Mr Stevens …and I’m sure he has the best of intentions)….anyway….My point here is that this initiative is counter intuitive. The government has already clearly said they do not see the NHS as providing anything even vaguely resembling a preventative style of care or treatment pathway, so the money that is getting invested in these wonderful campaigns is going to have to be taken from somewhere else in the NHS.
It will start as a brilliant program…it will run for 6-12 months, it will dwindle & before we know it, there won’t be a single CT Scanning bus going round a single supermarket or shopping mall in the country because there simply isn’t the money. Plus the media will no longer be interested in a million pound scheme that saves 1 in 33 lives….they (we) want an initiative that saves 1 in 5. Flash in a pan….and a costly flash too…
Secondly, we keep being advised of these wonderful survivor statistics. Increasing survival rates directly results in a greater burden upon an unbelievably overstretched NHS.
It’s brilliant that us patients survive. However, as we survive & we become more knowledgeable & more aware of our options we also come attached with higher expectations, wants & needs. We demand that perfect package we read about in the paper…..the reality is VERY different- because the wallet is empty….and who is to say that that Treatment X is even right for the patient. At what point should we step back as patients and allow the medical experts we idolise & place on pedestals to treat us the way they feel is best – not the way we are telling them to…because we read about it in the Guardian?
Patients have the capacity to influence so much – especially Rare Cancer patients who have desperation on our sides.
More than 22% of cancers are considered to be “Rare”…that’s 4.3 million patients across the EU fighting for survival. The patient community battle against access to drugs, lack of information, poor diagnosis, poorly designed trials, reimbursement issues that differ from country to country & even standards of care once we are on a treatment plan.
These topics amongst so many others were discussed – very eloquently at the conference. But herein lies my final issue.
What happens now.
I went to this event, it should have been perfect…there were so many things that could have made it better (least of all a few dozen more patients).
The problem is that these great discussions were had, and the box was ticked. There might be an article or two that goes out into some decent medical & industry publications…but that’s it.
Nothing changes.
Nobody will leave there & lobby parliament for the Millions & Millions of pounds needed to be really effective in a “war on cancer” in the UK. To provide more Nurses, to give patients time, to improve research, to invest.
It’s a vicious vicious circle.
Maybe others think talking, talking more & talking again is an effective use of time & money to make a difference….I’m genuinely not sure talk is effective unless followed immediately by action & there wasn’t a single call to action at the end of that conference. So despite the strong program & intelligent well chosen speakers…it falls flat.
Maybe that’s’ just par for the course….
Maybe I’m just being grouchy because I have a brutal 48 hours ahead getting myself ready for surgery. It’s a patient’s life for me. There isn’t a magic wand that can take this away from me, just as there isn’t one that can magically find the money to fix Cancer once & for all.