A review of 2020

We have almost reached the end of 2020, a year that has taken a significant toll on many people within our community.

Since March, when the pandemic reached us in the UK, and the first of the national lockdowns was introduced, we have heard from many people affected by lupus who have experienced financial hardship, disrupted healthcare services and emotional distress. There are certainly many who will be glad to see the back of 2020.

I am extremely proud to be a part of this fantastic charity which has continued to operate throughout the whole of the year, providing regularly updated information and guidance for our community, maintaining remote support services through our trained telephone Contacts and virtual group meetings, introducing new virtual seminars, and offering financial assistance to those hardest hit (over £27,500 has been awarded in welfare grants from our COVID-19 Emergency Assistance Fund).

All of this would not have been possible without the dedication and hard work of the LUPUS UK Staff Team, Trustees and Regional Volunteers throughout the country. I would like to thank everyone who has helped support the work of the charity during this year!

 

Office closing dates
To ensure our staff can get a decent rest, the LUPUS UK National Office will be closed for an extended period over the festive season this year. We will be closing on Friday 18^th December 2020 and will re-opening on Monday 4^th January 2021.

 

Stay safe over the Festive Season
We hope that you all have a safe and restful time over the festive season. There may be a lot of expectation and pressure around celebrating together, but you should feel comfortable to do what is right for you over this period. To do that, it is important that other people in your Christmas bubble (if you decide to form one) understand your needs and increased risk. They can help by being extra vigilant in the days before you get together, reducing any unnecessary contact with people, especially as some people with the virus have no symptoms. You can get more guidance for the festive season in our article HERE.

 

Looking forward to 2021

COVID-19 Vaccination
It is excellent to see that the rollout of the COVID-19 vaccination programme has already begun in the UK and this will pick up pace in the New Year. Hopefully, the vaccines will help provide protection to those who are most at risk of severe illness from COVID-19 infection and reduce the strain on our health service. I’m pleased to see that the NHS and Government has recognised that people with lupus are at an increased risk and have specifically named the disease within the priority groups for vaccination. If you need more information about the vaccines, please look at our article HERE. We will be updating this regularly as more guidance becomes available.

 

More virtual events
We will be continuing our popular series of Live Virtual Seminars in the New Year. On 27^th January I will be joined by Dr Arvind Kaul discuss “Understanding Lupus Blood Tests”, then on 25^th February I will be joined by Prof Liz Jury, Dr George Robinson and Dr Anastasia Kalea for a seminar about “Diet and Nutrition in Lupus”. To join these live virtual seminars and to watch recordings of the previous events, you just need to register for free at https://lupusuk-virtual.org.uk.

 

Anifrolumab
We have recently been involved in a NICE (National Institute for Clinical Excellence) consultation for this new lupus treatment. We expect that a full appraisal may take place during 2021 and we hope that NICE will approve the new biologic treatment for use by NHS England (devolved UK health services will have their own decision-making process).

Whilst only a relatively small number of people with lupus are likely to benefit from this new treatment, it will hopefully provide another vital treatment option for those people who have not experienced sufficient benefit from other available medications.

You can read a bit about this treatment HERE. We will keep you updated about any developments throughout next year.

 

Guidelines for the Management of Cutaneous Lupus Erythematosus (CLE)
LUPUS UK has recently contributed to a consultation on draft guidelines for the management of CLE produced by the British Association of Dermatologists (BAD) and other relevant specialist bodies.

We hope that the final guidelines will be published in 2021 and they will be the first NICE-accredited guidelines specifically for skin-involvement in lupus. It is hoped that the guidelines will help to improve understanding within the medical profession and result in better quality care and health outcomes for people with CLE.

 

Coming back together
I am hopeful that as 2021 progresses it will become safe to ease some social distancing restrictions and come together again. We will be working closely with our volunteer-led Regional Groups to help them re-start meetings when it is safe and we look forward to joining in with organised fundraising events again.

 

Your support
The support of our staff, Trustees, volunteers, members, fundraisers and donors is needed more than ever! We hope that you can continue to support the work of LUPUS UK throughout 2021 and help us make it a successful year. Some important lessons have been learned during 2020 and new opportunities are presenting themselves. Together, we can make a permanent and meaningful improvement for the experiences of people affected by lupus.

 

Thank you again for all your support throughout 2020. I hope you have a safe and peaceful time during the holidays and I look forward to catching up with you in 2021.

Paul Howard
Chief Executive

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If you would like to make a donation to support the work of LUPUS UK, please click HERE.