“Hi everyone, and welcome to the staying positive workshop, I’m Jaimee.
We are going to be starting with our icebreaker than going straight on to medication and treatment; I hope you have a good day.
I’m Jaimee Mallion and I’m 16, at GOSH I’m a Foundation Trust member, and I do a lot of volunteering for them as well. As a patient foundation trust member, I get involved with the hospital and try to improve the services for the children there.
I’ve done quite a lot of workshops for Great Ormond Street, it keeps me going through my condition and it helps me to help other people too. Today, I’m running a workshop for staying positive to help a group of teenagers through their condition and see the good side of life as well.
On the floor you see some animal alliteration; do you want to select one on how you feel about your medication and your treatment?
‘I’ve chosen bumble bee because I have to take steroids and when I have to increase me does I get a bit buzzy, almost, and a bit high buzzy like a bumble bee’
I first came to GOSH about four years ago; I fractured my spine after a gymnastics accident. I’ve been diagnosed with Ehlers-Danlos syndrome, where my ligaments are very, very stretchy so my muscles have to hold my joints in place.
I decided to become a Foundation Trust member with my mum and dad because we were sent an email through explaining all about the Foundation Trust and what it means, and how it can give the hospital the independence that it needs – from a patient perspective I know what it’s like to be treated [at GOSH] so I can help them to develop the hospital in that area.
What makes sticking with the regime difficult? ‘I suppose if sometimes you have to take your medication in front of friends or other people then that can be a little bit awkward and can make you feel a bit different, I suppose.’
‘It can disrupt your routines and you have to plan your day around that and plan your medication which can be a bit annoying.’
‘Yeh, I agree, I mean it can be a hindrance but it can also be a really big help – as you have all discovered and realised, medication can save your life if you take it at the right times, at the right slots, with the right food.’
The people that come to the work-shops are the people aged between 11 and 18, and the people that run them are aged between 15 and 24.
The patients are the people that know the hospital and how they’re treated is the most important part. It’s really important that they have their say about what they need out of the hospital because they’re the people that use it.
Ok what we’re going to do now is split into groups and we’re going to be discussing bullying. So what I want you to do is fill in the chart and describe your bullying incident, and mark whether you think it was verbal, physical, psychological, or cyber bullying. Also write down what you did about the bullying and what you could do.
Anyone can become a patient Foundation Trust member as long as they are a patient at Great Ormond Street. To be a good foundation trust member you have to believe in the hospital and what it does for you, want to help to improve it, and keep what it needs kept.
Can you notice any between what you do about the bullying?
‘I suppose it’s always about telling somebody, so not just sitting there and keeping it all to yourself. Telling someone that you trust is important too.’
The best thing about being a patient Foundation Trust member is having your voice herd and seeing what difference you can make.
My confidence has increased a lot since I’ve stood up and talked about what I think needs to be changed. I was very quiet and very shy, but I’m not anymore, and I can be who I want to be.”