My Life: Thines Ganeshamoorthy, 18, London

I have a rare condition called Osteogenesis Imperfecta, so I’ve had to travel from hospital to hospital all my life. I use specialist services and over the years I’ve seen improvements, but there are still some problems. My care would be so much better if there was better communication between hospitals.

I always have to tell my local hospital what’s been going on at my specialist hospital and vice-versa. I’m heavily involved in all aspects of my care, so it doesn’t faze me to talk to doctors about it. But there are people who can’t do this.

I was one of many young people from across the UK to tell the NHS London Tertiary Paediatrics Project my ideas for improving children’s services, as one of the Royal College of Paediatrics and Child Health’s youth advisory panel. The parent and carers event gave us an opportunity to highlight concerns that adults may not think of, and influence services before decisions are made and the window of opportunity closes.

Ideas included visiting patients, parents and carers to support their engagement in the project; creating webinars and forums to enable ?patient and carer input about the project development; and listening to their input and providing feedback.

It was great to meet other people and hear their experiences as I don’t get to do it very often. It was positive to hear everything that’s going to be done to improve paediatric services and I look forward to seeing how our ideas and comments shape ?the service.