Hello and welcome to this eyeforpharma event special where I share with you the upcoming conferences in Philadelphia – North America and in London – Europe, during October 2019

Many people possibly will wish to know why I champion eyeforpharma, and indeed pharma in general so I’ll go into it, ‘briefly’, here before introducing the events.

Back in 2017 I literally did stumble across eyeforpharma and start to follow their webinars and found myself getting quite animated at the things I was hearing and reading. Of course, I am a patient so to me I naturally had a different perspective on the things they were discussing. When it comes down to it the topic of ‘patientcentricity’ was very similar to my own regarding the need for a multi-disciplinary approach to medical healthcare of patients. All of this regarding how we became connected can be read in FibroFlutters About Us pages but for the purpose of this mini-magazine I will tell a brief outline.

In the Autumn of 2017 after discovering the world of pharma I made a decision to become a more external advocate rather than just on social media sharing campaigns for the different health therapeutic areas within chronic, invisible and rare illnesses. FibroFlutters was still trying to find it’s niche as we kept developing and growing after attracting people from all over the globe to our website for information, which back then was predominantly about Fibromyalgia.

It just didn’t feel like we were doing enough to encourage change, or to get our voices heard about the things that mattered especially when considering medical side of healthcare and pharma. We were already engaged with research from the beginning and I realised early on that the lack of communication between academia and clinical was so huge that it was no surprise that drug development was a slow progress because when you combine the minds, and skill-sets, you are bound to achieve better outcomes. In my opinion, it was time for them to stop being insular, stop scrapping with, and against each other, and begin to collaborate… with us… patients!

On the other side of the fence as ‘patients’ we also needed our healthcare providers to see, and understand, that those of us with multiple conditions required a different approach to our care. Meaning that we needed a multi-disciplined team approach rather than just having one condition looked at a time because one illness doesn’t go away to let another one step forward, they are all at play all the time. We are also patients 24/7 and not just when we visit the doctor.

It soon became apparent that the best way to help drive forward change was to get more involved so when I saw that eyeforpharma were holding a conference in Barcelona March 2018 I did everything possible to get there and get involved. I had already signed up and registered as Patient Research Ambassador with the NIHR – National Institutes of Health and Research in the UK as well so I went to Barcelona advocating research as well as patient voice.

The trip to Barcelona for FibroFlutters was probably one of the best things that ever happened to us as myself and fellow Flutter Sonia Hawkins, who was there as my care support but also got involved with the round-tables. She is a patient-carer so all-in-all we were wearing various hats and we were literally ‘gobsmacked’ by the responses we received from some very high profile people from the pharma industry. We found our calling, and have never looked back.

One of the best things was during the final round-table hosted by eyeforpharma chairman Paul Simms, when my ideas and thought processes were avidly accepted regarding a multi-stakeholder approach to gaining patientcentricity that arose from my own model for multi-disciplinary medical centres for people with multiple chronic conditions. We hadn’t met Paul before the roundtable but it was more than obvious that I’d caught his attention as well as the people in the room. It just so happened that an idea spawned from our table that ended up becoming the reality of a new event ‘Im-Patient’ a pharma conference designed by patients for pharma and we were involved.

It is true, I pledged my loyalty to Paul and his team at eyeforpharma for giving us the opportunity to be heard. For the first time it felt like we mattered, that our voices mattered and that we finally find our niche! No, we are not employed by eyeforpharma we are Patient advocates who help to advise the team, and Paul, alongside taking part in the events as a speaker when needed. They have helped to educate us about modern-day pharma in exchange for our insights as well as through their patient policy given us the chance to attend their events. I now spend time trying to motivate other patient leaders to embark on a similar journey and share their stories with eyeforpharma and to get involved with encouraging change to our healthcare systems. Patient advocacy is the best way forward to get heard but knowing where you can do it is the hard part, then getting through the door is the next hard part. Getting on stage and speaking, or being involved in round-tables are things we can teach ourselves to manage, but only once we through that door to begin with.

On behalf of FibroFlutters for giving us the opportunities that they have I thank Paul and his team for everything this last 18 months and can honestly say that I, personally, am very proud to have been part of it all. They have helped us find our niche and now we are a group supporting patient, health, research & pharma advocacy in our efforts to show that we also support all-stakeholders.

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