#ChronicillnessVOICE SPECIAL EDITION ‘PHARMA’ APRIL 2019 | eyeforpharma Barcelona review | Plus Newsletters & Resources

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Carole’s overall thoughts and experiences, ideas and conclusions

Personally, I think I did tremendously well to get there and back to Barcelona totally by myself without any carer, or my chair.

Everyone thought I was ‘bonkers’ when I chose to take the trip to Barcelona without the power-chair.
I mean, how on earth was I going to cope? I’d never manage it! Dragging my luggage, using two walking sticks and completely by myself… impossible for some to imagine.
There are times when pushing the boundaries is necessary in order to discover what your limitations are, to learn what you can cope with, and what you can’t cope with. I mean how else does a person find out? It’s not like I’ve never done it before, in fact I’ve often pushed my boundaries to self-test my limitations.
The fact of the matter is that I’m now a single woman so travelling solo is going to be something to get used to and the Barcelona journey was a good one to test my abilities. Call me crazy, or call me sensible, at the end of the day a self-assessment was needed so I took the opportunity to do it.

  • This was a test for me to push my boundaries to the maximum to learn what I could and could not cope with.  
  • It was a successful mission and now I know for next year what to do, what to avoid, but most importantly what help and support to request from event organisers.

The distance to walk, for patients, to the ‘pink room’ from the EXPO hall where the meeting’s zone and coffee / water stations were, was very long and something which I found overbearing many times during the conference.  It was a long way for people with mobility difficulties, especially when going backwards and forwards to the meetings zone for meetings in between speakers. The first day I was back and forth like a yo-yo!

It didn’t take me long to realise the mistake I’d made when assessing how much walking I’d be doing. I’d thought to myself the hotel is on the doorstep of the conference centre so not too far to walk, forgetting about the amount of walking I’d be doing in the centre itself. This has made me think about getting a walker with a flip down seat because it would be a lot less strain on my elbows and hands.
I did miss my chair for it’s leg-raisers and for getting me around, but not having it gave me the chance to find out what I could use instead, especially if travelling.

Not every city in the world is disabled friendly and using a walker, or sticks, are likely to be the only options that I have for getting around. This is something which I needed to address because I don’t want to be restricted to only going to conferences that I can manage in the chair.

There’s also the question of what type of luggage to use for disabled travelling without the chair, this is difficult because I am advised against heavy lifting of any kind so haversacks, etc are good… but also bad for my back and body due to me not having the muscle stamina in my lower half. I had a small case and an over the shoulder bag with a long strap, but it was awkward and I struggled at times. It wasn’t a problem in the airports as I had disability assistance, but the trains were a different matter. I’m used to travelling in my chair on trains and the chair carries the luggage. I had to fight my way to my seats too, which is something I’ve not experienced for 6 years. Don’t worry I did get tons of support from staff so wasn’t left to struggle on with my journey.

The biggest issue that I had was when getting breakfast, and lunch, due to me not speaking Spanish and not being able to ask for help with plating and carrying food because I had a walking stick in each hand. It bewildered the waiting staff in the hotel, and at the conference centre, when they would go to take my sticks so I could plate up food…whoa!!!! I need them for balance LOL… never mind LOL I mean… all I need to do is turn my head and I’d be wobbling LOL

Overall my decision to leave the chair was a good one because now I know that as long as I pace myself, don’t over pack and use the right type of gadgets for disabled foreign travel… then I can go anywhere.

Refuelling the gadgets… and refuelling the humans

The conference had a great set up in the EXPO Hall including charging stations for gadgets, and a few small seating areas that were a great idea, however, there was a distinct lack of areas to sit and eat the wonderful food, at lunchtimes, that we got as part of being conference delegates. There was a supply of beverages all day too so always had access to keeping hydrated and awake through their coffee, which was quite nice but always espresso so to a get a mug of coffee you had to top it up with hot water. It took me until Wednesday to figure that out! ha ha!!

Mmmm lots of cards collected

Networking / Meeting and making new friends

Eyeforpharma Barcelona is a fantastic playground for networking and meeting new people from across varying sectors within the pharma industry.
As a patient-leader it is important for me to make as many connections as I can to make it easier to keep a better eye on what is a key issue, and what not so much!

Personally, hearing some excellent speakers, meeting new friends and meeting the faces behind the names at eyeforpharma was fantastic.

It was also a great platform for promoting FibroFlutters and I got some great Feedback regarding my organisational structure, which was useful as I got to hear people speak freely about how they could see why it is ‘flexibly-centric’ depending on what is the main aim is of a project.  I mean whether it is patient, health, research or pharma advocacy. I now realise that one way to get pharma to recognise us is to add pharma to our advocacy listing because I do promote the fact that pharma is changing for the better.
If networking wasn’t available, I wouldn’t have come to this conclusion… well not just yet, anyways!

Obviously, as a patient organisation networking is just as important as learning so making new connections and getting the opportunity to speak to people was a key bonus.
It is also essential for me as a patient organisation to make connections that will lead to possible co-creative projects and I have a few in the pipeline that I am looking for collaborators for.  Being able to share these ideas to search for interested parties, put the ‘feelers’ out as a basic market research for potential project ideas is imperative. There’s not much point to embarking on projects that do not stir any interest.

I met a few company representatives through the meeting’s service and eyeforpharma conference networking App and am pleased that I utilised it, and filled in my profile. It was powered via a fantastic App as well! A great way to get yourself out there to possible interested parties before the event, and to pre-arrange meet-ups at times to suit whilst your there. This app was great and I think with a few tweaks it would have been perfect, being given the opportunity as a patient advocate to join this networking system was also a bonus and a way for us as advocates to meet directly with pharma.

As mentioned earlier in the ‘Pitching Day’ review I was also networking through other avenues as well, also provided by eyeforpharma such as the pre-conference networking at the ‘Hilton Hotel’ on the evening of 11th March where I got to talk to a number of the people who had been pitching for the awards. Giving them an opportunity to speak at a more personal level about their projects and work. It also gave me the opportunity to talk about my work as an advocate and introduce FibroFlutters to a number of people too. I did collect a number of business cards throughout the course of the week.

One of the other amazing opportunities given to me by eyeforpharma was a ticket to the networking event at the ‘W’ Hotel on the evening of 12th March. This was invitation only so I was really spoiled by the gesture, and quite humbled for the opportunity especially considering there were only 400 spaces for the event.
After my co-pilot Sonia didn’t make it to Barelona I was on my own so quite unsure about going, however as mentioned earlier I managed to meet the Norgine team and tag along with them. I was meeting someone there but I wasn’t fortunate enough to find them, it was quite crowded and I wasn’t very stable on my feet, and also not very tall which can be a hindrance when trying to look for people. Apologies were given the next day!

It was a classy affair with fancy nibbles and delicious ‘Mojito’ cocktails coupled with some fine people from the world of pharma to talk to. A chance to socialise and talk shop, promote the work that I do and also, it gave me the chance a little later on to meet some of the awesome folks who are part of the eyeforpharma team and spend a little time with them. Can’t thank the eyeforpharma team members enough for looking after me and making sure that I wasn’t left by myself to get back to our hotel.

All in all, I agree that eyeforpharma Barcelona is an amazing place for networking

Kris Sterkens from Janssen speaks at eyeforpharma Barcelona March 14 2019 and it was was one the best ‘Keynotes’ of the conference. It is always easy to tell if I am enjoying something, or agreeing as my head will be nodding a lot, which it did throughout the whole of Kris’s presentation.

This is from eyeforpharma’s ‘You Tube’ channel that I subscribe to, why not join me to see. and hear, other amazing speakers?!

Articles to read

The following article written by ‘Adam Chapman‘, Editor of eyeforpharma, discusses the dual-winners of this years eyeforpharma Patient Champion Award

A Win-Win Situation
Teresa Ferreiro and Catalina Cernica both take home the prestigious Patient Champion award

This is a great read about addressing systems change and the best ways to approach it by looking at the company Syntegrity, and the model that they have devised. They just have just presented at #efpPhilly.
Examining the structural forces at play could crack the industry’s most complex challenges

“Syntegrity has devised a method for pooling together key players and encouraging a cross-pollination of ideas that, in David’s words, is “so often missing.” The process culminates in a two-day event, where a pharma company will convene with its key internal and external stakeholders to thrash out a solution to the problem at hand.”

As an advocate for the use of everyone’s skillsets within a group to provide a broad perspective this article about Regina Fritsche Danielson from Astra Zeneca by Danielle Brown was an uplifting read.
For me it makes common sense to recruit a diverse set of mindsets rather than to opt for the like-minded! ~ Carole

The Art Of Leadership|  Danielle Barron | eyeforpharma Mar 27, 2019

AstraZeneca’s Regina Fritsche Danielson shares some practical wisdom on manning the tiller
“For me it’s really about diversity in personality, bringing different types of individuals with different perspectives into leadership teams and, most importantly, making everyone feel included.”

The Art Of Leadership| Danielle Barron | eyeforpharma Mar 27, 2019

Patient-Centricity: An Appraisal
It has highlighted the gulf between patient compliance and patient experience, but has it broadened the focus beyond disease states?

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eyeforpharma Editorial Disclaimer

“The views and opinions expressed in our content are those of the authors and do not necessarily reflect the official policy or position of eyeforpharma. Examples of analysis performed within this article are only examples. Assumptions made within the analysis are not reflective of the position of eyeforpharma.”

Thank you everyone at eyeforpharma for the hard work and support for all aspects of #efpbarca #impatientconf #efpawards you’re a fabulous team!

It was an amazing week, I’m very grateful for the opportunities. ~ Carole

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