My story - Sophie Lyons

A patient's view: A smooth transitionSophie Lyons

Teenager Sophie Lyons lives a full and active life despite having a serious congenital heart condition and is being supported through the transition from paediatric to adult services by staff at Royal Brompton.

Sophie’s first visit to Royal Brompton as a four-day-old baby was accompanied by flashing blue lights. She has been a patient under the care of consultant cardiologist Dr Michael Rigby ever since and says that she is glad to be staying at the hospital for her adult care.

Sophie says: “I have been visiting Royal Brompton all my life and the staff have always been so lovely to me and explained everything that was happening. When I became a teenager, I wanted to bury my head in the sand and ignore my condition, but the cardiac nurse specialists showed me that I could live an almost normal life as long as I looked after myself. The nurses have been a great support and are always available by email or by phone.

“I also trusted Dr Rigby and found him really approachable. I used to save up questions to ask him at my appointments, such as whether I could go on rollercoasters – which I could! In fact, I remember one phase when I wouldn’t listen to anyone else and felt that other adults were using my condition to stop me having fun.”

Sophie says that she feels prepared for the transition to the adult team and has been introduced to her new cardiac nurse specialist, Lynda Shaughnessy, who has explained her condition to her in more detail. Sophie adds: “This has given me a better understanding of what was originally wrong with my heart and how it’s been corrected over the years. Learning about my condition and treatment has been a very gradual process. When I was younger, the staff talked more to my parents than me, but now they talk to me on my own.”

Margaret Jiggins is one of a team of cardiac nurse specialists who have looked after Sophie. She says the transition to adult services is a big step: “It’s not just attending a different clinic, but a whole new approach. As an adult, Sophie will be empowered to take control of her own care and we have been helping her to prepare for this. It’s also a difficult time for her parents as they have been so involved in her care since she was a baby. Although the transition will be tough, I know that Sophie will be brilliant as she has a very positive attitude towards looking after her health.”