NMOSD Regional Patient Meeting on 26th January 2018 at Avonmouth House, London.
The Oxford NMOSD team invited people with NMOSD (and their guests) who live in the London area, to attend a patient meeting at Avonmouth House. There were 16 attendees, including 8 people with NMOSD, 6 guests (partner/family/friend), and four members of the Oxford NMOSD team: Dr Jackie Palace, Rosie Everett, Kay Day and Dr Silvia Messina.
We started with a questionnaire about medication and an overview of NMOSD and its treatment, followed by an exercise exploring the different medications NMOSD patients may be prescribed, and what they are prescribed for.
We then had a discussion about medications and the reasons why people may not take them, which stimulated lots of discussion. As staff we found this useful to help us understand the challenges of taking long-term medication, and from the feedback we received, found the session beneficial to all the participants.
We then had a delicious lunch and time to chat with each other. For some this was the first time they had met another person with NMOSD, despite their having had the condition for many years.
We should like to thank NMO Spectrum-UK, the UK’s leading charity and patient advocacy group in the fight against NMOSD, for funding the event and we look forward to the next patient meeting.