We spoke to Christopher Payne who attended the CHECT parliamentary drop-in event on Wednesday 15th May at Westminster. This was part of World Retinoblastoma Awareness Week 2019, to engage MPs in raising awareness of Rb in their constituencies.
Can you tell me a bit about your experiences with Rb?
When I was three and a half I was diagnosed with Retinoblastoma in my left eye. My eye was enucleated and replaced with an artificial one at the Royal London Hospital. I was then subject to rounds of Chemotherapy at Great Ormond Street Hospital.
Why do you take an interest in politics?
I have always had an interest for things going on around me and in the wider world; before 2016 I would ask people who they supported but not much else. However this has all changed with Brexit. I am very keen on politics now because I enjoy it, I enjoy debating and public speaking but I also think it is important to stay connected, stay informed and to take notice of policy and laws which could impact me now or in the future.
What was the parliamentary event for? What did you do?
The aim of the parliamentary debate was to raise awareness of retinoblastoma amongst MPs and to also raise awareness amongst the general public by asking the MPs to post about the event on their social media pages. We also asked MPs to help spread the signs and symptoms amongst healthcare professionals in their constituencies. Another aim was to attempt to alter policy, primarily regarding the Scottish Red Book. Personally, I spoke with the MPs about Rb, about what the charity does and what they could do as MPs to help. I also took some photos with MPs for their social media posts about the event.
How do you feel the event will benefit CHECT?
It was more about getting the retinoblastoma message across to MPs, healthcare professionals and the wider general public. CHECT were able to get their name out there, which can only be a good thing for the charity. Saying this, the benefit for CHECT is that the event has helped them further to achieve their goal to get more people aware of the signs and symptoms of Rb.
What motivated you to get involved with the event?
I really wanted to help and support the charity, especially at such a pivotal event. The chance to meet MPs was fantastic as well.
Was there anything about the event that surprised you?
The most surprising occurrence was definitely meeting Jacob Rees-Mogg. I obviously knew that I would get the chance to meet MPs, but had no idea I would meet anyone with such a high profile! It was fantastic to finally meet him though as I was trying to look for him at the first TFC meeting at Global Studios, as he was on air on LBC when we arrived. Another surprising thing was meeting the PPS (Parliamentary Private Secretary) of one of the MPs who attended who as it turns out I had been campaigning with.
Do you think that more people within politics should know about Rb?
Definitely, as with all rare diseases. It is important as rare diseases are still very impactful, but aren’t covered often enough in debates or in policy, something that should occur more.
Why do you feel that being involved with the Teen Focus Council is important?
I feel that being involved with the TFC is important because it is so valuable to be able to speak to other teenagers who have been through the same thing as you and to be able to chat and share ideas and experiences. It is a chance to learn from one another and to have fun, something which all members I believe really appreciate and value.
What is the most beneficial thing that CHECT has done for you?
What a hard question! CHECT have done so much for me and my family that it is hard to choose a single answer. I think probably the institutions like the TFC. The Royal London Hospital also ran the Eye Club which I would attend when I was younger – a CHECT staff member would often go along to these as well. These meet ups are so beneficial for all who attend, it is a chance to meet with others who are in the same boat and just have the opportunity to catch up and have fun.