Theo Sergiou interviews Patrick Tonks, Chief Executive of the Childhood Eye Cancer Trust
Q) Why did you choose to apply for the job at CHECT?
A) Two or three main reasons. Having worked in the private sector for over 25 years, I decided that I wanted to do something that had more meaning and purpose, so I decided to move into the charity sector. I knew that working for a charity would mean that I could do something that would make a real difference and help other people.
I worked in a charity which provided help and support for children with severe stammers, but during that time I was diagnosed with cancer. I went through surgery, radiotherapy and chemotherapy, which made me very sick for quite a long time. After it had all happened, I really understood the massive impact cancer has on anyone, let alone a child and their family. So when I received the advert for the CEO role at CHECT the two words children and cancer really grabbed my attention and made me want to apply.
Q) What is so special about CHECT compared to other charities?
A) It’s the work it does. I’ve always wanted to work in a small charity, because every member of team contributes to help the cause, and you feel close, like a family. The work we do is in three sections: firstly helping to support families who have been affected by retinoblastoma; secondly the research we do; and third is raising awareness to drive early diagnosis. I think for a small charity to do so much work in those areas is extraordinary and the passion that people have here has made it happen.
Q) What does your job entail?
A) Ohh, that’s a lot of things! My job is to make sure that we do everything we can to help the people who need it, support families, raise awareness and find the funds to carry out research.
I make sure everyone works together so we are helping the families impacted by retinoblastoma. This can involve review meetings so we can learn from the past and make CHECT the best it can be. For example, I’ve recently sat down with Lizzie [CHECT’s Trust Fundraiser] trying to find funds to support our work, and I have a meeting later with Petra [CHECT’s Information and Research Manager] about an exciting new idea for using social media to raise awareness.
Q) What is the best part of your job?
A) For me, the best part is seeing the difference we have made. For example, reading your story about the teenage weekend made me feel happy. We worked really hard to plan that weekend and knowing how much it meant to you was immensely touching. What better job can you have than making people’s lives better?
Q) Did you know anything about retinoblastoma before becoming CEO of CHECT?
A) No, I had never heard of it and that’s quite worrying. Not a lot of people really know about retinoblastoma. Most GPs have never seen it before and often won’t recognise it. So raising awareness is extremely important and we are trying our utmost to ensure children are diagnosed as early as possible.
Q) What’s the best thing that’s happened while working at CHECT?
A) There are a lot, but what I enjoy the most is meeting people who we have supported, and seeing how well they are coping. When I first joined the charity I spent time at Birmingham Children’s Hospital and at the Royal London Hospital meeting some of the families in the clinics. It was really powerful to see first hand how much we can help families in such difficult situations.
Other examples are the teenage weekend, when it was wonderful to see the difference we’d made; and another was doing the Great North Run when I ran with my wife and three children to raise money and awareness for the charity.
Q) What progress do you hope to make with the charity?
A) I don’t particularly want to take it into any new places. I think after 30 years, the support, awareness raising and research are such important areas, we need to make sure they’re developed to their maximum potential.
Q) What one thing do you want to improve about CHECT? How? Why?
A) We need to find out how we can work better with teenagers who have been affected by Rb. For example, the teenage weekend helped a lot of people and we want to do more things like that. The other thing is to find ways to secure a stable income so our work can carry on. Our members are such phenomenal people and do amazing things to raise funds, so we can’t let them down!
Q) What have you done above and beyond to make CHECT be the best it can?
A) I don’t think I’ve done anything above and beyond. I’ve brought some new experience and fresh ideas, so part of that is changing the way we do things. My family would say encouraging them to run 13.1 miles was a lot of effort! But I think everybody goes above and beyond at CHECT. The CHECT family all have the intentions of the charity in their hearts.
Q) What do you have planned for CHECT’s 30th birthday?
A) Ohhh that’s top secret! But…there’s one thing we’re definitely planning. The members weekend in autumn 2017 will be a special time for everyone to get together and celebrate 30 years of CHECT!
We also have loads of other things planned, so we hope that it will be the best celebration we’ve ever had and a chance to show the real progress of CHECT over the past 30 years.
Q)What has been the biggest progress over the 30 years?
A) I believe the biggest progress has been developing the support that simply wasn’t there before. We have more to do but awareness of the signs and symptoms is higher today, and the research is helping to improve outcomes for current and future families affected by Rb.
Q) Any last messages?
A) I think I’m a very lucky man. Anyone who works in an environment like CHECT can see where they are making a real difference. I don’t think you could ever find a better job.
Here’s to another 30 years of miracles!