Newsletter: summary of the first Nerve Injury Community Day

Newsletter: summary of the first Nerve Injury Community Day

In November 2019 we held our first community day, for which a series of activities were organised that aimed to be informative about the research in the field and to provide a venue for people living with nerve injuries, their families, and others interested in the topic to interact. With those aims in mind, the question now is, how did we fair? Did we properly convey our intentions and did we, in fact, help to create a community? To address these points lets go through the events of the day. Additionally, attendees were kind enough to provide us with feedback about the activities we planned. Thank you very much for taking the time, this information is very helpful.

The activities fell into three categories: talks, workshops and stalls. All these aimed to provide scientific information, clinical expertise and allow participants to share their experience of living with a nerve injury. Regarding the scientific content, attendees mentioned that it was at the, “right level for [their] understanding”, that it was, “really good to hear from professionals” that “truly [want] to make a difference”. The feature most lauded, however, was the space given to share experiences, as attendees found it “good to share stories and hear other perspectives”. Special mention should be made of the personal testimonial by Gary Pearce, which was both moving and informative, and at some points even funny. Furthermore, everyone appreciated having “real people sharing real-life experiences” and stated they appreciated “meeting others with similar injuries, journeys and empathy”. However, we did find that there is much space for improvement. It was mentioned that a discussion of more diverse therapeutic approaches would be appreciated, and in particular that not enough time was allocated to survey the stalls area. All this feedback is summarised in the graph below.

Ratings for each organised activity type

From the researchers’ side it was an invaluable experience, with researchers saying that it was, “such a privilege to have chance to talk directly to people living with nerve injuries”. Additionally, researchers learned that, “pain is a much more serious issue than we originally thought” and consequently hope to address this area more in their work.

In the future we hope to build on our experience and organise another event, considering this feedback. This may include adjustments to the format as some attendees, justifiably, stated that they are, “not into lectures” and would prefer “more opportunities to share stories”. We would particularly like to build on the sentiment expressed that “it’s nice to be asked and listened to” and for the next event, we hope, therefore, to have more input from the community at large. So please contact us if you would like to take part in the organisation of the next event and help to strengthen this community.

You can read even more about the Nerve Injury Community Day in our PDF booklet for the event

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