Having always worked in a fast moving business I understand the importance of remaining ‘relevant.’ You are only as good as your last deal! If you don’t keep your work innovative you will quickly be lost. As I find myself now in the business of cancer, this is even more important. With social media available to everyone, and blogging being very common amongst people affected by cancer, I find myself asking that question now. My website has been going for nearly seven years now, and I do try to ensure that my subject matter is fresh, but the format has changed little. It is as good as it can be, I worried that this might be stale now, particularly with many fab bloggers/vloggers and the like entering the market. I only want to write if I know I am helping people and the minute I feel I am not, I will stop.
But strangely my readership is increasing, as also are the connections and speaking requests that come through the site. Of course, the work we do at simPal is helping too. What I have noticed is that I am receiving many more international requests! QUITE IRONIC CONSIDERING THAT THE FOUR LARGEST CANCER CHARITIES IN THIS COUNTRY CAN’T EVEN BRING THEMSELVES TO SHARE A TWEET FROM ME OR MY CHARITY! Collaboration is the subject they ALL want me to talk about. Quite crazy when I think how these charities work in the UK.
How we work with patients, health care professionals, politicians and business, and unite everyone, to ensure that communication improves and everyone understands the issues we face, is what people want to hear about. Cancer affects us all, therefore it is only logical that we should work together. The scramble for ‘cancer cash’ is one of the biggest hurdles we face. Whether it is the pharmaceutical giants slugging it out or cancer charities fighting for their slice of the cake, many decisions are taken purely with money in mind.
My latest venture of which I am very proud is my trip to Jerusalem and Palestine in a couple of weeks. I have been invited to talk to health groups across the region, talking about how my personal experience has led me to do the work I do now and helping many families via simPal. Collaboration across the globe is the ultimate answer, with so many similar issues but obviously each country has it’s own unique issues.
I will be meeting patients, support groups, local politician and businessmen, all keen to learn how to work together. As we all know this particular area has incredible political difficulties, so I am delighted to receive this invitation from the Patient’s Friends Society (Jerusalem) The trip will be groundbreaking for both parties, and I hope will open some more working relationships. Both countries have very different ways of working when it comes to healthcare, and I am honoured to be invited to share my own experiences.
In the following few months I have other international invitations which I will be fulfilling, and also seeing some of the finest technology available to treat cancer. Of course these visits do not change anything immediately, as change in healthcare can be so painfully slow. But what this indicates to me is that international minds are now much more receptive of collaboration. In fairness many of our charities in the UK have taken steps in this direction, but the ones at the top of the tree, unfortunately still with the most influence and money, have not.
By not even communicating with all the ‘patient experts’ in a meaningful way, they are leaving themselves isolated, with fewer and fewer, finding their work relevant. Quality over quantity will always show through, and people are becoming bored of the constant corporate messages we hear from these guys. The cancer world has progressed, whilst these organisations have been sitting on their hands. Cancer support no longer looks like bland help lines, forums and mass produced booklets. It’s about people and lived experiences. Rightly or wrongly people now turn to ‘Dr Google,’ for all of these things, and what they really need is face to face time. Fancy websites and videos are good, but are not close to the answer now. Practical support is what is really required. It’s difficult of course because it involves time and people, and can’t be solved by sending out loads of scheduled social media campaigns.
My speaking work has taken me to many lovely places, and hopefully will continue to do so. The one thing I see at EVERY conference I attend is that everyone wants to listen to the patient story. Powerpoint slides and wonderful scientists are all put in the shade when the personal stories are told. Everyone then understands why they do the work they do. The patient must be at the centre of the cancer world. If they are not, we will not be able to improve things and much more resource will be wasted! So it seems that my audience has told me that I am still relevant and I am delighted to continue my work until they say that I’m not!!
As always these are my own opinions and experiences, so please feel free to share yours below.