RCPCH young spokesperson comments on children's services

Youth Advisory Panel Member, Thines Ganeshamoorthy writes the 'My Life' feature for the latest edition of Children and Young People Now magazine.

'My Life', Thines Ganeshamoorthy, 18, from London:

I’m really keen to make sure healthcare for young people is the best it can be so I’ve recently joined the Royal College of Paediatrics and Child Health’s Youth Advisory Panel to make sure my voice is heard.

I have a rare condition called Osteogenesis Imperfecta so I’ve had to travel from hospital to hospital all my life. I frequently use specialist services and over the years I’ve seen big improvements but there are still some problems. For me, my care would be so much better if there was better communication between hospitals - at the moment, they just can’t seem to get it right. I find that 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, however there are people who can’t do this, and to be honest patients shouldn’t need to.

I was just one of many young people who came from across the UK to tell the NHS London Tertiary Paediatrics Project my ideas for improving the city’s children’s services. The parent and carers event which was held at the Ambassadors Hotel, in London, on Monday 23 April, gave us an opportunity to highlight concerns that adults may not necessarily think of and influence services before decisions are made and the window of opportunity closes.

Some of our ideas included:

• Visiting patients, parents and carers locally to support their engagement in the project
• Creating on line webinars and forums to enable patient and carer input & communications about the project development
• Listening to their input and providing feedback.

I was so excited about attending the event, it was great to meet other people and hear their experiences as I don’t get to do it very often. It’s 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.

To find out more about the London Tertiary Paediatrics Project visit www.londonspecialisedcommissioning.nhs.uk/