Fresh perspectives from children and young people
29 Jul 2020, 4:35 p.m.
Talking to our young patients is so important. They tell us what works, what doesn’t, and how to improve what we do. Recently, we called on the expertise of our amazing patients to develop a series of videos about uveitis – a condition that causes inflammation of the eye.
In 2019, the GOSH Ophthalmology team held a special event for patients with uveitis and their families. They wanted to make sure that children and young people would enjoy the day and get lots out of it, so they asked for help from the GOSH Young Person’s Advisory Group – a dedicated group that helps to shape research at GOSH. Dr Lola Solebo and her team also asked patients in clinics at GOSH what they would like to hear about at the event, and how they would like to hear it.
This helped the team develop a presentation that was such a success on the day, and made things so clear for children and young people, that they just had to do more with it.
With the help of young people and their families, along with funding from the NIHR GOS BRC, they turned the presentation into a series of videos about what uveitis is, treatment options and the latest research (see above and below).
They also held a drawing competition, asking children to share what uveitis, or uveitis research meant to them.
Dr Lola Solebo says:
I’m constantly surprised by the great ideas young people come up with. One example is not making the pronunciation of drug names too perfect when the children were narrating the video, to reflect the reality that the drug names are hard to say!”
This is just one of the projects funded through the NIHR GOS BRC Patient and Public Involvement and Engagement call, which is run every year.
The videos are now available online and are used by the GOSH team to talk to children and young people about the condition. This work has supported their ongoing research study – known as UNICORNS - which aims to answer important questions about what happens to children with uveitis and why.
This video is about the different medications we use to treat Uveitis:
This video is about the research we are doing to help improve outcomes for children with uveitis:
Learning from patients and families during a pandemic
Researchers have worked with a patient support group to better understand the wide range of parenting experiences during the pandemic.
Helping parents find answers after miscarriage
A team at GOSH have developed a non-invasive imaging technique for the post-mortem imaging of babies who are miscarried or stillborn.
GOSH study reports most symptoms of severe COVID-19 in children are resolved after six months
Scientists and doctors from GOSH and UCL GOS ICH have reported that, despite severe illness, most children who had PIMS-TS after contracting SARS-CoV-2 infection had their symptoms resolve after six months.
New insight into when CAR T is effective against childhood leukaemia
Scientists studying the effectiveness of CAR T-cell therapies in children with leukaemia have discovered a small sub-set of T-cells that are likely to play a key role in whether the treatment is successful