Two years ago I went to the first ever Melanoma Patient Network Europe conference in Brussels. I missed last year’s annual conference because we were in Florida for my brother in law’s wedding, so was really pleased that the dates worked this year.
The venue ; Leuven. The challenge; present my project to the network to show them what I am doing in the UK.
I type that knowing full well, that anyone who “knows” me will roll their eyes reading the above…a challenge…”ask Imogen to talk about the Melanoma Patient Conference”….and then they will laugh, scoff and brush aside any element of challenge to me…rather the challenge to get me to stop talking about it!
But you see…there are two flaws here….one I have never really presented anything to an audience of 95 before & whilst I am truly passionate about this project and could talk about it for hours (yes I’ll admit it) there is nothing that intimidates me more than public speaking.
Second…and perhaps something I need to work on even more that finding my inner brave girl….I under-estimate my nerves & preparation…then I “fluff up” and chastise myself endlessly.
The purpose of the MPNE is to share our individual experiences – both personal and in terms of the national successes & issues – and then work together as a network to improve the situation for Patients across Europe.
There may be those in the UK that might voice how far ahead the UK is & we don’t need to help Europe, we should concentrate on what we do at home….and on one hand I agree…we should focus on fixing issues at home. However we can learn from others. We might have some of the best researchers & oncologists in the world treating Melanoma in the UK, yet our survival rates in relation to incidence are lower than most of Europe.
We should be willing & able to learn from other countries systems & collectively pick out the best bits that other countries do in order to improve our own system. Then in turn we should then bring that same methodology internally – all UK trusts should learn from each other. Rather than concentrate on the “failings” we should recognise hospitals & teams that are really helping patients & making a difference…and other hospitals & departments should want to emulate these achievements.
It’s very much one of the key messages for the Melanoma Patient Conference I am organising.
The network has helped me to see what can be done to improve the systems within the UK.
My story isn’t unique – my diagnosis didn’t go well & my Melanoma was missed for far too long. Melanoma Patients across the UK are not getting the support or information they should be getting.
When you go to any networking event – you take your own agenda…I don’t just mean the conference agenda, I mean the things you personally want to get out of the event.
I wanted to launch Melanoma Patient Conference and I wanted to talk to one of the other people that was going to be speaking at the event to invite them to talk at my conference.
But when you take your agenda & the focus of what you want to achieve, you also have to be prepared to listen & learn from others. Your voice isn’t the only voice…and certainly when attending a Melanoma conference…your story is by no means the worst. There are people that attend the network who have lost loved ones & still choose to remain as members…actively working together for the benefit of Melanoma patients.
The conference is exhausting. New things to learn & understand become overwhelming. Personal stores can be emotional to listen & relate to. But these are people whom are more than just fellow network members to me.
They are friends and people that I admire. We are genuinely pleased for each other’s achievements. It’s really reassuring for other patients to know that there are these people who are working so very hard…voluntarily…to strive to help make sure other Melanoma patients don’t experience what they did. We learn together…we cry together… we will make a difference…together.
My talk went well….my hands shook a bit….but the network were really interested to hear about the event & what has been achieved with it in such a small amount of time.
The speakers we have on board are amazing….funding is well underway & we will have delegates to accommodate, educate & feed in just 3 months’ time!
I may well have been nervous about speaking in front of 95 people most of whom are patient advocates like me….but I am going to be having to present to 350 Delegates in June…and some of them are the leading Oncologists in the country.
I need bigger pants!
We still need some funding support & we are still inviting Melanoma Patients & Medical professionals to join us. It will be quite an achievement. 350 Delegates working together, talking care, access to information & survival.
The website is now live www.melanomapatientconference.co.uk so you can view the draft agenda. Elements of the website are still a work in progress so please check it out & share it amongst your circles.