Sophie, 24, first came to Great Ormond Street Hospital (GOSH) when she was just eight weeks old. Now under the care of adult services, she looks back on her experiences at GOSH and making the move to a different hospital.
“At my eight-week check-up, doctors discovered I’d been born with cataracts in both eyes. I was referred to GOSH and had my first operation (to remove one of the cataracts) straight away. I had my second operation (to remove the other cataract) a week later.
“I used to have to go to GOSH every couple of months for check-ups and, although it sounds strange to say this about a hospital, I did actually enjoy visiting. I had to wear eye patches to strengthen my vision and I remember the nurses giving me animal stickers as a treat, which was fun. Having my eye pressures checked was always scary and I still don’t like having them tested now. The staff were really great though. With any of the tests or treatment, if I felt like I couldn't do something, they would appreciate that and see if there were ways to work around it.
“Growing up, it was difficult going in to hospital so often, but my school teachers were all supportive. Someone used to visit the school to assess how far away I was sitting from the board, and see how my vision was faring by playing games with me. It helped to talk to my friends about it as well and I had a close friend who understood."
“When I was 15, I went for a routine appointment at GOSH and they talked about moving on to adult services. I did feel like I was thrown in the deep end. I know now that there are services and clinics for young people to talk about transition but I don’t think I was offered that at the time.
“It was all very scary at first and I did get upset, but I soon got used to it. It’s part of growing up and it’s a transition you have to make. To begin with, I would either take my mum or my dad with me and that helped me get used to going somewhere different. Gradually, I asked my parents to wait outside for me or, if it was a very short appointment, try and go on my own.
“Now I’m happy to go by myself. I understand my condition more too. I spent time reading up on it and reading up on medical terms and things I might experience. That’s really helped me understand what the doctors are talking about."
“At an adult hospital, you’re more in control of your decisions and the future of your treatment. I’ll have to have a corneal transplant in the near future but it’s up to me when to have the procedure. I can decide when the time is right - no-one’s telling me to have it now. I’ve had to take responsibility for taking my medication on time too.
“I used to see the same team every time at GOSH, which was reassuring, and Isabelle Russell-Eggitt, the surgeon who oversaw my care when I was just a few weeks old, is still at the hospital. Now, I don’t see the same person at every appointment, so it can sometimes be frustrating explaining my condition again.
“I still call both of my parents every time I go to the hospital and fill them in on what’s happening. And if I’m having an operation, I’ll ask one of them to come with me. They’re very supportive, and so is my husband. Also, if I’m really unsure about something, I can always call the hospital for advice."
"I now work full time on a farm now where I look after all of the animals and educate visitors about animal care and farm life. It’s definitely important to talk to your employer and make sure that they understand how they can help you in the workplace.In 2014, I got married and graduated from university with a first class honours in Animal Behaviour and Welfare.
“Everyone gets scared when they move to adult services and it can be an upsetting time, but it does get better as you mature and grow up. Make sure you talk to people about how you’re feeling and get different opinions. You don’t always have to make quick decisions – if you want to think about things, you can. It doesn't have to be an immediate change either, you can gradually ease yourself into it. It doesn't stay scary forever.”