By London YPAG,
Hello, I hope you are all well. I am going to tell you about our last meeting which was on the 7th of July two days before my birthday, so I brought in some cake!
The first person who came in to speak to us was Frankie, she was researching about Rasmussen’s Encephalitis (it’s very long I know). This is when one side of your brain is damaged and it is most commonly found in the left side of your brain which controls languages so usually with this condition you will forget how to talk. Frankie wanted to know what improvements could be made to her Patient Information Sheet that establishes how patients are progressing after their hemispherectomy (it means literally what it says, hemi: half, sphere: ball.
After that Sarah came in to talk about an app her and her colleagues at the National Institute of Health Research are creating to thank patients for their involvement in research.
It is a personal app where nobody can spy on you while you’re using it, it is also accessible and friendly to use and it gives you updates on the results of your research.
Afterwards, Jasmine came in. She is a dentist and she researches Osteogenesis imperfecta, which makes you have weak bones , your sclera is blue and your teeth can crumble. We had to look at her questionnaire sheet and suggest any improvements.
Well that was it really, hope you have a lovely summer, hope to see you next time!.
Alexis
Shout Out For Youth Mental Health Mia, a member of the Network’s Young Persons’ Steering Group writes: On Tuesday 7 June, five of us from the Group were lucky enough to attend the ‘Shout Out For Youth Mental Health’ conference day in Birmingham. There were many inspirational speakers that we heard from, who had come […]
A short, 1 minute animation produced by Cancer Research UK, explaining the term ‘randomised trial’
This is a workshop on clinical research that can be run by teachers with young people as a learning exercise.
