Due to the lockdown and social distancing, LUPUS UK’s 2020 Annual General Meeting is being conducted by video/teleconference, attended by just the Trustees and myself. All current members should have received their AGM pack and voting slip in the post. We’re pleased to have received more votes than the 2019 AGM. We are sorry that it wasn’t possible to make the AGM as open as normal. We will publish the draft minutes soon, for all of you to read. Below is my CEO’s report for the AGM, being held at 11am on 16th May 2020:

The COVID-19 pandemic has had unexpected and unprecedented global consequences. The effect of the pandemic and measures introduced to prevent the spread of the virus have been felt by everyone, but some people within the community are impacted more greatly than others. It is during times like these that organisations such as LUPUS UK are never more needed.

We must be grateful to our Board of Trustees and previous CEO, Chris Maker, for ensuring that the charity always maintains sufficient financial reserves to cover our existing grant commitments and at least one year’s operating cost of the National Office. Thanks to this sensible forward planning, the future of LUPUS UK is not threatened by the current crisis and we can continue its vital work, which is more essential than ever.

LUPUS UK has been quick to respond to the COVID-19 pandemic, ensuring that trustworthy information and guidance tailored for the lupus community was available at the earliest opportunity and regularly updated to reflect new evidence and changes by officials. We kept our essential National Office Helpline open to receive an extraordinary number of calls allowing us to provide a listening ear and clarity to guidance from officials. The charity also launched the COVID-19 Emergency Assistance Fund, an initiative to provide financial support to individuals and families affected by lupus who are experiencing financial uncertainty and hardship.

During this time we have built stronger connections with organisations representing people with conditions similar to lupus; such as vasculitis, scleroderma and Sjögren’s syndrome. LUPUS UK’s involvement in the Rare Autoimmune Rheumatic Diseases Alliance (RAIRDA) is proving very beneficial. Through RAIRDA we have addressed issues around the stable supply of hydroxychloroquine in the UK and we continue to campaign for better guidance and support from the government for people considered to be ‘vulnerable’ or ‘extremely vulnerable’ to COVID-19. RAIRDA has been collecting evidence from people living with these diseases to campaign for access to good quality medical care throughout the lockdown and into the future.

LUPUS UK has already adapted to the climate we are currently living in. I am extremely grateful to our staff team who have shown great flexibility, patience and goodwill by swiftly changing to home working. I’d also like to express thanks to our Board of Trustees for utilising technology to continue meetings, allowing us to develop our strategy for these new challenges.

We were very disappointed to cancel and postpone events across the UK, many of which had already involved a great deal of work from volunteers in our Regional Groups. My team and I will be working hard over the coming weeks and months to develop and provide new services for people with lupus who are shielding and social distancing.

I’d like to finish my report by thanking all members and supporters of LUPUS UK. These are very challenging times for charities, due to the cancellation of so many important fundraising events. We’ve been blown away by the kindness, generosity and ingenuity of people who have found ways to help the charity, so that we can help others.

Stay safe,

Paul Howard
Chief Executive

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