December 14, 2018

Patient Advocate in Focus - Kay Curtin

"I guess you could say I fell into patient advocacy with a bang," says Kay Curtin.

"Of course no one expects to find themselves with cancer, advocating for services and drugs, and I was no different. When I got my diagnosis of a recurrence of Melanoma taking me to a Stage IV with a poor prognosis, I realised no one was talking about my particular cancer, and there was lots I wanted and needed to know."

"This spurred me into seeking out other patients, and the only luck I could see in that moment was stumbling across a very newly-formed group on facebook called Melanoma Support Ireland. I have never been shy (well not since I was a teenager) and I quickly found a place for myself as an administrator in the group. Through our Irish group I came into contact with a European Melanoma umbrella group called Melanoma Patient Network Europe (MPNE). They offered me and another member of our group a bursary to travel to Brussels for their annual conference."

"When I think back now to that time, I cringe a little at just how little I knew about my own disease. I had tried in the years I was in remission (over ten in total) to ignore anything relating to Melanoma. I laugh at the messages I sent to the conference organiser. I was so nervous about attending - How would I get there? What I should wear - casual or smart? What should I know? Would I understand anything?... All these questions were swirling around inside me as I made my way to Leuven, just outside Brussels. When I got there, I soaked up everything I could learn like a sponge. I knew this was a tremendous opportunity, not just for me personally but for the patients in our group who weren’t in a position to travel."

"This first foray into advocacy opened many doors for me; I connected with patient advocates from around Europe that were experiencing similar issues to us in Ireland. We discussed so many topics that weekend that I felt my head might explode on the way back home."

"While I was there, some of the other patient advocates mentioned other conferences that would be happening in the coming months. I was still unsure medically what would happen with me, but I knew I wanted desperately to learn more. I knew it would help me and the others cope - information is power!"

"Later that year, I found myself in Chicago at the largest oncology conference in the world - The American Society of Clinical Oncology (ASCO). I’ll admit at times I questioned myself why I was there; I stood, lost physically and mentally amongst a sea of 40,000+ delegates. But something happened. I found my voice. Before I knew it, I was standing at a microphone asking a question at a plenary session on Melanoma. Afterwards, I spoke to some of the presenters. I was still naive; I would later realise these oncologists and researchers were literally the rock stars of my disease. I’m glad I wasn’t intimidated, and I was glad that they were, for the most part, very happy to talk to me."

"I felt I had nothing to lose. Besides that, they were just humans like me and you. I had Stage IV cancer and I might never get this opportunity to question again. I knew if I left the sessions without asking, I would know in my heart I’d wasted an opportunity not just for me, but also for the patients back home desperately waiting for some news on a breakthrough."

"On one occasion during a huge session with over 5,000 delegates in the audience, I got up to ask a question. Later my friend Iain, a fellow patient from the UK, would remark that he was in the overflow room, and all he could hear was an Irish accent coming through the speakers, and he thought, 'Bloody hell, that’s Kay!' It still hadn’t sunk in with me that what I was doing was unusual. I was the green Irish lady, but I was learning fast."

"I haven’t returned to ASCO as getting travel insurance for America is too problematic for me, but I have continued my quest for information by attending the annual European equivalent European Society of Medical Oncology (ESMO). It rotates around different European cities, and its attendance is growing each year."

European Society of Medical Oncology ESMO

"ESMO have a very active patient advocacy track, which covers very diverse topics from side effects of treatments to best practice in advocacy, and encourages patients’ advocates to realise the valuable contribution they can make. ESMO has embraced patient advocacy. We are full society members, we attend the conferences, have our own sessions, have access to learning resources and learn from each other’s experiences (they also learn from us, I might add). We are the patients living with this disease. We have a right to sit at the table and have our voices heard."

Kay's 13 top tips for attending ESMO

  1. "Become a member. It's mandatory to attend the conference. The membership fee is greatly reduced for patient advocates."
  2. "Look out on the ESMO website for details of the annual conference and the application date for the patient advocacy grant. The grant covers travel and accommodation."
  3. "If you’re planning to apply, book some accommodation well in advance. Book somewhere that doesn't  impose a cancellation fee, just in case you don’t get accepted to attend."
  4. "Follow ESMO on Twitter and Facebook. If you want to know what’s happening, you got to get social media savvy."
  5. "Join the Facebook ESMO patient advocates group to network with other advocates. They are equally diverse and dynamic."
  6. "Download the ESMO event app, and plan in advance the sessions you want to attend. Remember to pace yourself - you cannot attend everything."
  7. "Reach out to researchers from your own country that may be attending, arrange some meetings to discuss what issues are important to your cancer type, and take the opportunity to let them know what’s important to the patient."
  8. "Get familiar with scientific papers and presentation posters. Know when the relevant poster sessions are on. It's a good place to ask eager-to-talk researchers about their work, on a one-to-one basis."
  9. "Get to the Members' Lounge early to avail of the catering. It really keeps your trip expenses in check. You will also get free travel within the city for the duration of the conference."
  10. "Don’t ask personal questions about your own diagnosis in scientific sessions. It is not the time or place. If it's personal, go speak to the presenter after the session ends, but don’t be disappointed if they don’t have all the answers for you. The reason they are researching is because they don’t."
  11. "Let people know you are there by tweeting with #ESMO, and your cancer type. It’s a great way to connect, to let people know you are there, and what you are working on. NETWORK!"
  12. "Most of all, be a sponge - soak it all up; the friendships, the atmosphere, the strange food, getting lost, seeing a face you recognise in the crowd, the professional connections, the knowledge you gain."
  13. "Be proud to represent your fellow patients and your country... I know I am."