Acronyms, Connections & Snow

Iimg_20161125_230243 have just arrived home after a wonderful, intense weekend in Sweden. I say in Sweden – but really I didn’t see anything of Stockholm other than the welcoming airport, I didn’t do the tourist thing…I just travelled to a beautiful destination to sit inside a room & talk Cancer.

Oh ok …I am playing it down a little…there is nothing “just” about this experience.

img_20161126_225601MPNE was formed to pull together a European network of like-minded patient advocates.  Melanoma being the common ground obviously, but this is more about drive than stage. Not everyone is a patient. Not everyone is tackling the same issues…but there are connections & we learn from each other & support / guide our own individual country endeavours.

The topic of the workshop this weekend was “Access to Innovation”. We were there looking at innovative ideas, working out ways to implement these ideas or just how to tailor them to our own specific national requirements.

So I already threw one Acronym at you…the Melanoma Patient Network Europe…and you are going to get a couple more. Acronyms are useful…they were created* by some tortured & overworked secretary in the 1950’s who had to keep manually typing out huge long definitions squillions of times over & decided to simplify (*completely made up). They are handy if you know them, but I have found over time that there can be 5 different meanings for the same Acronyms….so it helps to know what they relate to & whether they are medical or financial or educational otherwise you can end up a/super confused & b/making a complete arse of yourself!

One of the most pressing issues across Europe for patients is medicines. You are probably now thinking – duh of course – but before you assume I over imbibed in booze this weekend & completely lost the plot, there is this convoluted & yet bizarrely methodical process that gets drugs to market.img_20161128_145026

I should add….the UK system looks freaking complex & like a never ending stream of bureaucracy & discussion & stumbling blocks…but you know what….in comparison to some other European countries, we have it EASY!

The process is essentially designed to avoid the issues of Postcode lottery that the UK has been plagued with for so long.

Like anything that vaguely involves medical monetary processes there are acronyms….and it was NICE that were formed as the UK HTA body (Health Technology Assesment) to ensure that the system worked effectively & efficiently. They evaluate not just whether Drug A costs less than the incumbent offering, but if the Drug A would actually be better because of other things, like side effects, & the cost to administer the drug and the ease of doing so. The team behind NICE even created this wonderful process called MEA (Managed Entry Agreements) which take out stumbling blocks & help these drugs get to the patients quicker. This system enables a drug to be reviewed whilst being used by patients before a final decision is enforced.

There is more to it…I will happily discuss this off blog posts with anyone that really wants to find out what the UK system works like & why…but I used a word at the start of this blog post & it was intense. This stuff is not for the faint hearted. Its complicated. It isn’t always methodical or logical. Some people (including the 2 ladies that presented the topics to us), take years & university PHD’s to get their heads around medical economics…we had 3 days to become competent.

So to help us get through all this learning & brain information overload we had endless supplies of sweets & caffeine …complete over stimulation.

We were fed typical Swedish food in abundance…because learning needs fuel.

We ate….we ate more…and then a bit more. I hadn’t taken my running shoes because there was no point. The days starts too early for a run because its dark before breakfast & the dark sets in at 3.30pm before the day’s mind melding finishes & as a result no running off of the food at the end of the day.

The Mr sent me a text message to remind me that the seats of the car I was driving home in from the airport are narrower than I am used to & I should allow for some sort of displacement.

img_20161126_220951The only thing in perpetual motion were our mouths…we talked & babbled, & chattered and nattered to our hearts content. There was even an impromptu singalong around the piano at the festive Julbord dinner on Saturday night…well if one of the advocates in attendance just happens to be a Eurovision contestant from their own country you would take full advantage!

One of my friends said afterwards “wouldn’t it be fun to all go on a holiday together…where it isn’t just work & play…with our families there as well”….but the thing is, it probably wouldn’t be.

Not because I wouldn’t want to do it. More it isn’t just our “work talk” that is heavy and a lot to process. Our “social time” talk is not really family consumption either. We literally talk Melanoma in all ways from dawn, until dusk & in the case of the Julbord feast night until 2am.!!!(priming the 2 journalists who came to teach us about managing the media & being innovative with our press engagement, with stories of pain, suffering & utter inspiration.)

There was the small matter of my having to do a talk too….there were 4 advocates who had been involved with Innovative campaigns of awareness or projects in our own countries & we shared our initiatives with everyone else. It was fun for me to look back on the first Melanoma patient conference, especially because I am already well underway with the plans for next year’s event!

It’s hard to explain why I do this…and in all honesty whilst the food & drink at Krusenberg are totally worth the fact that I am now on a hard core diet until Christmas Eve, I would go even if this event took place in a prison cell on Mars. (*for the space travel alone perhaps!)fb_img_1480242276353

We basically fried our brains & minds non-stop for 3 days…and then just as we were feeling the wall was about to hit, where we couldn’t take any more learning & our butts couldn’t take any more sitting (possibly because the seats were shrinking) it started to snow!

It was at that point that 26 “grown ups” turned into giddy children…we ran outside, without coats. We posed for group photos & laughed incessantly.

The most infectious of all things is a smile.