Published On: 9th May 2024

The Access Foundation Supports LUPUS UK

With World Lupus Day this week (May 10th), The Access Foundation is shining a light on the fantastic work of Lupus UK in order to help raise awareness, assist and connect people suffering with this debilitating, life-threatening disease.

There are more than five million people around the world living with the disease. In the UK, 1 in around 1000 people have lupus yet it is still a relatively unknown condition, indeed 55% of people with lupus had never heard of it until they were diagnosed.

  • Lupus is a chronic illness of the immune system.
  • Lupus can cause inflammation and pain in any part of your body.
  • Lupus can cause many different symptoms.

LUPUS UK provides information for people with lupus, their carers, loved ones, employers and medical professionals. They also raise awareness and provide peer-support services, specialist lupus nurses, and medical research to improve treatments and build towards a cure. It is the only national charity that supports people affected by lupus.

Thanks to the £5,045 grant awarded by the Access Foundation, the charity was able to hold an information day in Cardiff, create an awareness video and pay for eight WebEx virtual meeting licences for volunteer regional support groups.

The information day was an excellent opportunity to improve education about the disease and treatment for people living with lupus. Sharing their knowledge were expert consultants, healthcare professionals and researchers. Moreover, attendees had the chance to meet others with shared experiences which was beneficial for them both socially and psychologically.

The awareness video was not only shared on social media, but also with NHS patient groups, general practitioners, and healthcare groups. The video also shared new research findings, providing welcome reassurance and validation for those recently diagnosed with Lupus regarding their experience of the journey to diagnosis (which is often long and complex). Finally, the video signposted people to the support services available to those living with Lupus.

People with lupus have mobility issues or experience severe fatigue, compromising their ability to attend meetings. Hence the eight WebEx Licences were utilised to provide regular meeting opportunities. As a result, it increased accessibility and reduced barriers for people with lupus to make the most of peer support opportunities.

Pictured left to right: Dr Siân Griffin, Consultant Nephrologist in Cardiff and Honorary Senior Lecturer at Cardiff University, Dr Chris Wincup, Consultant Rheumatologist at Kings College Hospital, London, Dr Arvind Kaul, Consultant Rheumatologist at St Georges Hospital, London and the London Lupus Centre, London Bridge Hospital, Paul Howard, LUPUS UK CEO, Dalila Tremarias, Co-ordinator of Cardiff Regional Group, Wendy Diment, LUPUS UK Vice-Chair and Trustee and Co-ordinator of Pembrokeshire and Carmarthenshire Regional Group, and Elaine Holland, LUPUS UK Chair of Trustees, and Chair of the North West Regional Group.

Paul Howard, CEO at LUPUS UK said:

“This very generous award will help us achieve three important activities - bringing together people with lupus, raising awareness of lupus, and keeping up virtual social connections with people who benefit from joining our Regional Groups but may not be able to travel. On behalf of our dedicated volunteers, and our National Office Team, I would like to thank the Access Foundation for making an effective and hugely welcome donation to our work.”