Adapting to support during the pandemic

node leader
26 October 2020

Narcolepsy UK - Adapting network meetings during the coronavirus pandemic

Narcolepsy UK has been running volunteer coordinated network meetings all over the UK successfully for many years. Due to the government's current restrictions on group gatherings we have been unable to run our meetings as normal. We have had to adapt so that we can continue to provide support that network meetings provide.

This is what we have been doing:

  • We ran our first support group video chat on the 22nd March and our first One2one support call on the 23rd March. Before the end of March we had run 11 video chats and 5 One2one calls.
  • Our first few video chats were focused on narcolepsy and the effects lockdown was having on us. 
  • A Facebook group was created to make others aware that support was available.
  • Meetings became more popular and fun, we created themed chats like "Treasure Hunt" and "Bake off" while maintaining the original support groups too. We also have a group specifically for young people.
  • We experienced an increase in new members and volunteers.
  • Training opportunities were made available to volunteers.
  • We have run over 80 video chats and 30 one2one calls since we started them. 
  • Over 50 people with narcolepsy have received support via video chats and one2one calls.

We have had some amazing feedback and comments from our members and volunteers:

"Video chats have help me be more happy and less stressed" - NUK Volunteer

"For my sanity, in these strange times, the Narcolepsy UK online support group has been my lifeline" - NUK Online Support Group member

"Chatting to others the same, has helped me accept who I am. I'm proud now." - NUK Online Support Group member

Our quick response to the coronavirus pandemic has had a positive impact on the narcolepsy community. An example of this would include a small group of volunteers that got together via the online chats and decided on their own and created t-shirts, badges and bags to sell on World Narcolepsy Day to raise money for the charity. 

Going forward, we will continue to host regular group video chats and offer one2one calls when required to support our members and volunteers. If you are interested in joining one or more of the meetings, please email Liam -

We are grateful that the Scottish Government has supported our Volunteer Coordinator's position over the past few years, which has made giving this additional support possible.