Susan Frankel (St Annes)
My name is Susan Frankel and I am the secretary of the North West Lupus Group.
I volunteered for the committee at the AGM in 2016 and became secretary a few months later when Janice stepped down. Subsequently, I became the representative of the North West group on the National Council which meets twice a year in London. At those meetings, I report back on our activities and learn what the other groups around the country are doing – we do get some good ideas that we can bring back to our area.
My Lupus was diagnosed in 1997 although, like many people, I had had symptoms for several years before that. As part of my role, I attend the coffee and chat groups at Oldham and MRI when possible and aim to support others with their illness from a position of experience. Having worked in the NHS for many years, I understand the frustrations for staff and patients that can result from the way the system works. One of the things I aim to do is to help in educating clinicians and find ways we can work together better.
Recently, I was appointed to the Patient Advisory network of Lupus Europe which is based in Belgium. This network was set up to ensure that the views and experiences of people with Lupus were fed into research studies and drug development. This should be exciting so keep an eye on the newsletter for any updates.