Beth Holman interviews Lesley Geen, Support and Information Worker at the Childhood Eye Cancer Trust.
Q1. What does your role include?
One of the main things that I do is support. I work closely with babies during treatment as well as children, teenagers and adults affected by retinoblastoma but also their families and friends, making sure they have the support the they need. I visit out patients clinics at the Royal London Hospital to see those that come for check ups. I am at the hospital every Wednesday too, where children are going through treatment and those who are at risk of developing Rb are screened to catch it early. As you can imagine, there are a lot of questions that people have during these visits and help that they need – whether its someone to talk to or signposting in the direction of another charity or professional who can provide more efficient assistance.
I also help organise financial-support, such as grants for people visiting hospital frequently, lower utility bills for eligible families, advice on benefits and more. There is a lot of relationship building involved in my work as I am closely involved with patients and families, but I work with the Rb team at the hospital too. Not only do I support existing families, but I also help Rb survivors who are thinking of starting their own family and need advice, or suggest resources that can help them with daily activities they struggle with. I also monitor our closed Facebook groups to make sure they’re a supportive place where everyone involved feels welcome and able to express any concerns and share experiences.
Q2. What motivated you to apply for a job with CHECT?
I was a nurse for 28 years and mostly worked with children. I often saw children with specialist cancers and the lack of knowledge about them surprised me. I then worked for Barnardo’s, which is a national children’s charity, but I managed and developed children’s services meaning I didn’t have much contact with the people actually receiving help and support. I missed working with children, so when I found a job with CHECT it was ideal as I could utilise my previous skills from my paediatric work.
Q3. What do you find most rewarding about your job?
One thing that I really enjoy about my job is making a positive influence on people’s lives, especially as people can be going through such a difficult situation. Another thing is seeing how people progress – I often see families through the child’s treatment as this is a hard time, then throughout primary school we don’t see them much as there can be fewer obstacles, but then seeing them as teenagers and adults shows us how much of a difference we have made and can continue to make throughout their lives.
Q4. Did you know about Rb and CHECT prior to working for the charity? If so, how did you find out?
Yes I did already know about retinoblastoma. During my nursing I saw a child with it, but only once. I did not know of CHECT though. I only found out about them through looking for a new job after my time at Barnardo’s.
Q5. In what way does CHECT differ to other charities?
Although we are a national charity, we are very small. This benefits us because we have a good connection between staff and get to know the members on a more personal level too. It also allows me to support people from diagnosis and all throughout their life, whereas in a larger charity you may not always see the same person.
Q6. How long have you worked with CHECT? How have things changed since you have been there?
I have worked there for around seven years now, I used to do three days a week but now work full time and enjoy my job a lot. It isn’t much different now to when I started; although our fundraising is very different as we used to just receive funds from members – now we have grants from other organisations too.
Q7. Do more parents know about Rb or is it still rarely heard of? Has working with a large, commercial, high street brand like Vision Express helped with this?
There has definitely been an increase in parental knowledge of retinoblastoma, we have seen through surveys that more parents now know about it and I believe social media posts from us and families has helped with that. Although there are still cases where someone’s child has just been diagnosed and they have never heard of it before, but this happens less now than when I started.
Working with Vision Express has helped spread the word. When they open a new store some of our families have attended which puts them in the public eye. This allows them to share their story which is often been written about in newspapers too, which is an amazing way to raise awareness. They have also done some fundraising for us which has been a great help.