To urge NHS chiefs to include young patients in the 'transition' process
I have been in and out of hospital my whole life. When I was a toddler, my parents realised something wasn’t quite right. I was later diagnosed with progressive CIDP (Chronic Inflammatory Demyelinating Polyneuropathy). Since I was eight I have gradually lost all movement from the neck downwards, and I have had to stay in bed for the last four years.
When you spend a lot of time in hospital, you get to know the doctors and nurses really well and you can spend a lot of time on one particular ward. This makes the prospect of transitioning from children’s to adult NHS services really difficult and scary for lots of young patients.
With my team, we believe that NHS managers need to listen to us and understand that they must respect our views and opinions throughout the process, and understand that every young person has different needs.
Caitlin sadly passed away on November 17, 2016. Her team have dedicated this project to her memory.