Nerve Injury Community Day

(Above: artist Jenny Leonard speaks with visitors)

The Centre for Nerve Engineering event was an opportunity for people living with nerve injuries and their families to learn more about nerve injury research and treatment, and share their personal experiences with researchers and each other. Some visitors came from as far away as Northern Ireland and the Channel Islands.

The goal of the event was to work alongside people affected by nerve injuries to generate new insights into nerve injury treatment and guide the direction of research. You can read more details in our Nerve Injury Community Day Evaluation Report 2019, featuring full event details, pictures and feedback from contributors and attendees.

Attendees took part in three workshops, run by researchers, clincians and patients, all tailored to the concerns of people with nerve injuries and shaped with patient input

The event was an opportunity for people living with nerve injuries and their families to learn more about nerve injury research and treatment, and share their personal experiences with researchers and each other. Some visitors came from as far away as Northern Ireland and the Channel Islands.

The goal of the event was to work alongside people affected by nerve injuries to generate new insights into nerve injury treatment, and guide the direction of research.

There were a wide range of interactive stalls and activities, including:

• Researchers from the UCL Centre for Nerve Engineering
• Healthcare professionals from Royal National Orthopaedic Hospital
• A local patient-led pain support group
• Trauma Brachial Plexus Injuries (TBPI) Patient Charity
• Emotional support /active listening from Samaritans

How did we co-create Nerve Injury Community Day?

Co-creation

The Centre for Nerve Engineering’s priority was ensuring strong nerve injury patient involvement from the outset. The community day was co-developed by people with nerve injuries, researchers and medical professionals.

This group crafted the direction of the event together through a series of workshops and discussions getting to the crux of challenges faced by people with nerve injuries, and what information and support they needed, with the feedback used to create the content and structure of the day. 

Panel discussion with Tom Quick (nerve surgeon), James Phillips and Rebecca Shipley (Centre co-directors) and Ed Stevens (TBPI Patient Charity Group)

How did the event go?

After a welcome by the Centre for Nerve Engineering’s co-directors, Rebecca Shipley and James Phillips, the audience heard a moving talk from Gary Pearce.

Gary suffered a nerve injury following a motorbike accident. He recounted his experiences of recovery and the setbacks he faced along the way, and thanked his treatment team. 

The attendees then took part in a series of tailored workshops, the themes of which were identified by the nerve injury patient group:

1. 'Measuring your recovery' – with Matt Wilcox, PhD researcher, and Tom Quick, peripheral nerve surgeon
2. 'Sharing recovery experiences' – led by people who've experienced a nerve injury
3. 'The science behind nerve injury repair' – with James Phillips and Rebecca Shipley, UCL Centre for Nerve Engineering researchers

Graphic facilitator and artist, Jenny Leonard, created a visual summary of the event and the discussion it provoked. 

Visitor Feedback

What did you find most enjoyable or beneficial about the day?

“Meeting others with the same type of injury and finding out new research and possible surgeries” – Visitor

“It was nice to meet people, understand progressions in science and feel heard” – Visitor

“Interacting with people like me! The information and workshops have been great! Knowledge really is power and this event has left me more confident!” – Visitor

“It was like group therapy – loved every minute of it!” - Visitor

“Seeing the nerve injuries from patients’ perspectives” – Volunteer

Constructive feedback to improve future events

• Workshops based on nerve injury types and levels of recovery: we based workshops off general concerns, rather than specific nerve injury types. Some attendees felt like there was a focus on peripheral nerve injury and this wasn’t relevant to their condition. Grouping people with similar injuries and experiences would help them get more out of the discussions.
• Changes to the stalls: visitors would have liked more time to wander round. Some visitors found approaching stall volunteers a bit daunting, and would have liked people to come up to them instead.
• Involve more disciplines: a few attendees would like to have heard about other therapies, like the role of nutrition.
• Keep an eye on the venue temperature: we held the event on a Saturday in the UCL School of Pharmacy, and the heating had been turned off overnight. Even though we heated the building on Saturday, some visitors found the cool temperature worsened their nerve pain.

Future direction

Throughout the course of the day, people with nerve injuries got answers to some of their concerns and researchers received helpful feedback to inform the course of their research. The Centre for Nerve Engineering researchers hope to build on the success of this community day by incorporating these insights into their work, and further developing relationships with the nerve injury community.

A young girl with a nerve injury colours in a drawing of a nerve cell