With Newcastle’s last Patient Information Day having taken place back in 2019, it was clear by the attendance this year that mitochondrial disease patients were delighted to have this social engagement back on the calendar.
As were we, since it offers us a great chance to raise awareness amongst patients about our support services.
Rather than enjoying some beautiful autumn sunshine or watching the Rugby World Cup, over 100 of them came along to The Catalyst on Saturday 14th October, including Emily who deserves a special mention for choosing to spend her birthday at the event. Her reward was a tuneful rendition of ‘Happy Birthday’ from everyone and a Colin the Caterpillar cake – a great celebration in our opinion!
Prof Bobby McFarland kicked off proceedings with a welcome and a quick rundown of notable events that had taken place since the last PID – so that’s a global pandemic, three prime ministers and a well-deserved MBE for our very own Liz Curtis to name but a few!
After all the introductions had been made, the day began in earnest with a keynote speech from MP Liz Twist, while the rest of the morning was dedicated to a presentation from Dr Andrew Schaefer on emergency care for mito patients and an update on current mitochondrial research and clinical trials from Prof Gráinne Gorman.
In the afternoon, patients split out into adult and paediatric sessions which included physiotherapist Dr Jane Newman banishing the post-lunch slump with some exercises as well as ‘Ask the Experts’ Q&A sessions with Newcastle’s, well, experts. And the day was rounded off with a big ‘thank you for pulling off an incredible event’ to the day’s organisers, Dr Yi Ng, Nurse Consultant Catherine Feeney and Nurse Specialist Alex Bright.
To be able to see everyone face to face, from patients to professionals, was amazing. I got a lot from this and it’s made me feel very positive.” – Clare, mito patient
During the day there were plenty of opportunities for families to meet, chat and visit the charity and research engagement stands that had been set up for the occasion. Lily were delighted to be invited along again, joining other charities including MDUK, Genetic Alliance, Leigh Network and IMP.
What a great opportunity this was for our Science & Patient Engagement Officer Katie to chat with mito patients of all ages and their families and share information about the support services The Lily Foundation offers. From practical and emotional support and benefits advice to Lily events and our Wish Fund, we always hope we can offer something to everyone, no matter what their mito story may be.
It was also a good chance for the supporting charities and patient organisations to meet up, share updates about what we’ve all been up to since the last PID (plenty!) and pinpoint areas for potential collaboration. Because everything we do is about putting the patient first, and we all know that when it comes to fighting mito, we’re stronger when we stand together.
Patient feedback after the event was overwhelmingly positive, with everyone agreeing that it was great to get together in person again, catch up and learn more about mito from the experts. Mito patient Clare commented: “To be able to see everyone face to face, from patients to professionals, was amazing. I got a lot from this and it’s made me feel very positive.”
If you would like to find out more about the support services we offer, please get in touch with [email protected].