It’s lunchtime, and I’m having a great conference experience. I’m at home, comfy, watching on a screen. I can get up and move about, make my own coffee, chat to the smelly dog, get a hot water bottle. I haven’t had to wash my hair, draw on a face, or leave the house. I’m watching via a live stream that works, and joining the conversation via twitter. And nobody can see me cry.
#PPIConferenceGalway has been occupying me most of the morning. Full title: Public and Patient Involvement (PPI) in Research: working as partners, making a difference. You know me, I’m all for getting involved in all aspects of health & social care. Sometimes it’s about fighting the tokenism, sometimes it’s a battle to get a space at the table at all. If I didn’t think it could change I’d walk away.
But I’ve never had the opportunity to be involved in clinical trails. For many people, trials are the only options. For many people with rare conditions there are no clinical trials because the interest isn’t there. No interest= no funding. Social media and the internet are changing the scope of trials-patients and families are finding each other and connecting across the world, creating a critical mass.
The tale that had me in tears today was told by Jude Sibley– Navigating clinical trials as the parent of a child with a rare disease. This is Jude speaking at a different event. Her presentation today was chilling, and powerful, and hopeful. Parent power is a wonderful thing. But since it doesn’t come cheap, what with all the trips to the USA to participate in trials, parents need to be fundraisers too. On top of everything else they need to do.
I had somehow missed the charity single that raised money for Lily Mae’s treatment. Jude and her husband are ballet dancers, Lily Mae is their Tiny Dancer.
WordPress won’t let me upload videos any more, but please do watch it, and spare a thought for all the families struggling to access clinical trials.
Now, to wash my face and get ready for the afternoon sessions!