The event took place at Tingewick Hall in Oxford’s John Radcliffe Hospital, and was hosted by the team from Oxford’s NHS Highly Specialised Services for Rare Mitochondrial Disorders and supported by The Lily Foundation. The hall quickly filled up with patients and their families, some who had travelled from as far away as the Cotswolds, the south coast and Devon, and there was a varied age range present, from the very young to the young at heart.
At the entrance to the hall, team members from the Highly Specialised Services were on hand to greet patients, with many professionals displaying information stands and posters showcasing their work. Representing The Lily Foundation were Founder and CEO, Liz, and Science and Patient Engagement Officer, Katie, and both were delighted to welcome some familiar faces as well as plenty of new ones. The evening proved a great opportunity for patients old and new to meet the team, ask any questions they might have relating to their condition, and find out more about how to get involved with the foundation.
“I found the event in Oxford fairly informative and some of the speakers in particular impressed me, it was so nice to see known people again. Although I have lived with the condition for years I learnt so much key knowledge”
James, young adult mitochondrial disease patient
After an introduction from Oxford’s clinical lead, Dr Victoria Nesbitt, there followed a presentation from genetic counsellor Jo Lowndes on reproductive options for mitochondrial disease patients, before Claire Blair, the highly specialised Speech and Language Therapist for the team, spoke about dysphagia and dysarthria (problems with speech and swallowing) associated with mitochondrial disease. During the break, attendees enjoyed mingling and chatting whilst helping themselves to a delicious buffet courtesy of The Lily Foundation.
After the break, Kate Browne and Frankie Taylor, the service’s physiotherapy team, gave some practical advice about managing post-pandemic fatigue, before Professor Joanna Poulton discussed her current exciting research projects, including a new red light therapy trial that could potentially benefit patients with mitochondrial disease.
Katie rounded off the evening with a presentation on Lily’s three-point mission and the support services the charity currently offers, then the evening closed with a Q&A session. All in all, the event was a resounding success, offering an informal atmosphere where attendees could relax, socialise and share stories, something that will hopefully lead to better peer support and, most importantly, long-lasting friendships.
"I attended the Oxford Patients Information Evening and found it very helpful. It was good to get updates on the latest research and listen to all the other talks. I enjoyed speaking with the Oxford team, The Lily Foundation and meeting some of the other patients who are dealing with Mito."
Clare, young adult mitochondrial disease patient
If you would like to contact us about the adult support services we offer, or have any ideas about how this service can be improved, please contact [email protected].