NNUH patient sets up Vasculitis Support Group

A new support group has been set up to support those living with Vasculitis, their families and carers in Norfolk.

The group was started by Norfolk and Norwich University Hospital patient Mark Sayer and his wife Maz, along with the help of healthcare assistant Sue Burrows.

Mark was diagnosed in 2016 and at the time was struggling with all that his treatment entailed so that both he and Maz began to feel very alone and helpless.

Having met Sue, who works as an HCA in the rheumatology department, they realised many people living with Vasculitis felt the same way and so they set up a support page on social media.
 
This gathered a lot of interest with many NNUH patients joining the group and realising the benefits of supporting and sharing experiences that would help others.
 
The first meeting was held recently at NNUH, in the Edith Cavell building, with Sue working tirelessly to ensure that every one of the patients had the opportunity to join and meet others and learn more about their condition, and for their families and carers to meet a support network too.

Professor David Scott, a retired Consultant Rheumatologist who had a distinguished clinical and academic career in Vasculitis, spoke at the meeting along with Dr Chetan Mukhtyar, a Consultant Rheumatologist at NNUH.

David said afterwards: “The setting up of this support group is great news for Vasculitis patients and will provide vital help for them and their families.”

Nursing assistant Amy O’Leary said: “There was a fantastic turnout with more than 50 people attending who were all keen to make the most of the opportunity and learn from the consultants that attended but also each other.

“Both speakers offered some invaluable help and guidance and honesty during the Q&A. We are very grateful that both were able to join us and help create a wonderful atmosphere of open discussions and support for all attending.”

“We have received a lot of really positive feedback and many people are very keen to meet again and set up the group on a regular basis and grow to offer more support to each other and anyone affected by Vasculitis in Norfolk.

“This group is in place to offer moral support and establish friendships which, from feedback received, is exactly what many of our patients are hoping for.

“Sue very kindly organised raffles and we received very generous donations for Vasculitis UK and we were able to raise a fantastic £588. We hope to continue to raise more for them and will be taking part in the NNUH Christmas Fair and other events throughout the year.“

She said future meetings would be publicised on social media and by spreading the word in clinics, adding: “We hope to see everyone back again and hope that more people will benefit from this shared experience and together we can gain more insight and understanding about Vasculitis and how we can all deal with this together.”