As Lupus Awareness Month is beginning in the UK, I have completed my first six months as the Chief Executive of LUPUS UK – and what a six months it has been! I wanted to take this opportunity to provide a few updates about the work we’ve been doing throughout the COVID-19 pandemic and let you know about some of our forthcoming virtual events. 

You will no doubt have heard reports about the challenges experienced by the charity sector as a result of the pandemic. The widespread cancellation of organised fundraising events has created a massive loss of income, many charities are experiencing increased demand for their services and usual ways of doing things are disrupted to ensure social distancing is observed and people are kept safe. At the beginning of September we’d managed to get the LUPUS UK National Office team back together in a COVID-safe workplace, but with infection rates rising some of the team are back to remote working. I’m extremely grateful to my excellent team for their patience and dedication, working through whatever challenges we come across. The good news is that LUPUS UK will continue to be here for people affected by lupus throughout the duration of the pandemic and after.

We understand that many people with lupus across the UK are struggling and feeling abandoned by the rheumatology teams and GPs during this time. We are working closely with other organisations representing people with rare autoimmune rheumatic diseases through RAIRDA. Please continue to share your experiences with us so that we can drive for some improvements.

LUPUS UK COVID-19 Emergency Assistance Fund
We know that many individuals and families affected by lupus have been significantly impacted by the pandemic, with some experiencing financial uncertainty and hardship. In April this year we launched the LUPUS UK COVID-19 Emergency Assistance Fund, providing cash grants for those most in need. So far over £22,800 has been awarded in grants to support people through the pandemic and lockdown. We currently aim to keep the fund available as long as people affected by lupus are struggling as a result of this situation.

Virtual Lupus Support Group Meetings
In September we helped some of our Regional Lupus Support Groups launch virtual support group meetings as a way for people with lupus to chat to each other for mutual support and to help overcome isolation experienced by some. The initial feedback from the first couple of meetings has been very positive.

“Being able to meet up with my usual lupus group after 6 months has been very relieving! Not only to see everyone safe but to share experiences as things have been very different during this time and you don’t know if it’s just you going through something or everyone – I guess similar to the reassurance we get during the in-person groups during “normal” times!”

We hope to assist more of our groups to provide similar services over the autumn and winter. To find your nearest group and ask them if they’re planning any virtual meetings go HERE.

We are extremely grateful to The National Lottery Community Fund for providing LUPUS UK with a grant allowing us to host our Virtual Lupus Support Group meetings.

Forthcoming Virtual Seminars
Later this month we are planning to launch a new six month series of virtual patient education seminars. Very soon we will reveal a dedicated website for you to register and access the free events. You’ll be able to join the live sessions to listen to expert lupus clinicians and researchers, take part in interactive polls, and have your questions answered. If you’re not able to join for the live broadcast a recording will be available online. For those without internet access, we will happily send a DVD recording to watch at home. Our first session will include guest speakers Dr Peter Lanyon, Dr Fiona Pearce and Megan Rutter to discuss COVID-19 and lupus. The topics of the other sessions will be chosen by our community. Please keep an eye on our social media pages and website for more news soon!

Please support us during Lupus Awareness Month
We rely on your support to provide our information and services for people who need them. We hope that you can support us throughout October.

Fundraising
Whilst many of the large organised fundraising events have been cancelled or postponed due to the pandemic, there are still many ways for people to help support our charity. This could be by completing a socially distanced Go That Extra Mile sponsored walk, a virtual coffee morning/wine and cheese evening or a bake off against friends and family. There are loads of fundraising ideas on our website and if you need any help with your challenge, please just contact us.

Become a member
If you are not currently a member of LUPUS UK, now is the perfect time to join! A subscription costs £10 a year and you’ll receive three editions of our News & Views magazine and news from your local Regional Group. By joining the charity, you are helping us to support other people when they are newly diagnosed with lupus or otherwise in need. CLICK HERE to join online today.

Shop
Have a look at the LUPUS UK online shop! We’ve just added some new items, including the adjustable wristband, tote bag and sunflower lanyard. We’ve also added a new range of high quality Christmas cards for this year – a lovely way to maintain some contact with friends and family who you cannot see through the lockdown. Visit the LUPUS UK Shop.

Donate
Your donations mean more now than ever before. If you are able, please consider making a donation to LUPUS UK during Lupus Awareness Month to help us continue the COVID-19 Emergency Assistance Fund and still provide grants for medical research and Specialist Lupus Nurses in UK hospitals. DONATE HERE.

 

We look forward to chatting with you throughout October. We will continue to develop and deliver support services, raise awareness of lupus and campaign for improved medical care. Please take care of yourselves and each other.

Kind regards,
Paul Howard
Chief Executive Officer