LUPUS UK CEO Blog – January 2022

LUPUS UK CEO Blog – January 2022

With the end of “Plan B” restrictions in England today, as well as the relaxation of measures in other parts of the UK this week, it felt like a good time to write a blog update. 

As with previous lifting of restrictions during the pandemic, there is a mixture of views from the lupus community (join in with the conversation on HealthUnlocked). On one hand, there are people who are pleased to see restrictions coming to an end, with the hope that life will return to normal. On the other hand, there are people who experience reduced confidence using public transport and being in enclosed public spaces because fewer people wear face coverings or maintain social distance. We all know that lupus affects everyone differently and so individual circumstances can vary greatly. We will continue to campaign for additional support for those who are at an increased risk from COVID-19 in the hope of avoiding any further inequality experienced by those from our community.


Looking after yourself
There are some measures you can take to protect yourself and reduce the risk of severe illness from COVID-19 infection.

1. COVID-19 Vaccination
Vaccination remains the best form of protection against severe illness from COVID-19. It is generally recommended that people with lupus get fully vaccinated. Many people with lupus may be on immunosuppressant medications which means they are eligible for three primary doses and should have a booster (fourth) dose a minimum of three months after their third dose. Whilst some people may automatically be invited for this, we know that there have been issues with digital records for this cohort and therefore we encourage anyone who is due for their booster to make their own arrangements. You can get more guidance about this in our article HERE.

2. COVID-19 Treatments
Throughout the UK, people who are at a higher risk of severe illness from COVID-19 are now eligible for anti-viral treatments if they have a positive PCR test. Whilst many people may have automatically received a letter about this, we are aware that some people who should be eligible have been missed. If you haven’t received a letter, that does not necessarily mean that you are not eligible for these treatments. If you develop symptoms of COVID-19 you should still request a free PCR test. If your PCR test is positive and you are not contacted within 24 hours, call your GP surgery or 111; they will be able to make an urgent referral, if needed. To learn more about the COVID-19 treatments, please take a look at our article HERE.

3. Reduce chances of contact
There are some additional steps you may be able to take to reduce your chances of contracting COVID-19 when seeing friends and family.

– Continue to practise social distancing if that feels right for you and your friends.
– Ask friends and family to take a rapid lateral flow antigen test before visiting you.
– Ask home visitors to wear face coverings.
– Avoid enclosed crowded spaces.


Looking after others
Whilst COVID-19 restrictions are being lifted, the virus has not gone away. All of us have a responsibility to help protect people in the community who are at an increased risk from coronavirus. I am supportive of initiatives such as “Distance Aware” and “Please give me space” which aim to enable individuals and organisations to politely prompt ongoing distancing and respect of individual social space. Some people may choose to wear a badge or lanyard from one of these initiatives to discreetly identify that they appreciate some additional space to feel comfortable when in public. If you would like to learn more about these schemes, please take a look at our page HERE.

I am pleased to see many businesses have announced that they will continue requesting that shoppers wear face coverings (HERE). I hope that many people will choose to respect this and give more confidence to at-risk individuals who need to share these public spaces.


What’s next?
Whilst we may be approaching a time when COVID-19 is considered ‘endemic’, the impact of the pandemic will still be felt for a long time. This is particularly true for many people with chronic illnesses who have struggled to get good quality care from an NHS under extreme pressure. 

A paper recently published by Melanie Sloan and her research group has highlighted the persisting impact of COVID-19 for rheumatology patients and clinicians. You can read the paper in full HERE.

“Many patients have suffered greatly due to reduced care and quite understandably report feeling ‘forgotten’ and ‘abandoned’. They often felt let down by individual clinicians not responding in times of crisis, leading to reduced medical security. However, our study also identified that patient contact attempts often failed without the knowledge of clinicians. Clinicians reported a high level of empathy for their patients and that their efforts to provide care were often thwarted by inefficient administration systems and technology, chronic understaffing, and under-funding. Our findings from these multiple perspectives suggests that these are largely systemic rather than individual failings.’” – Melanie Sloan, lead author and researcher, University of Cambridge.

We will continue to ensure that people with lupus are listened to as plans for recovering from the pandemic are developed. Please keep an eye out for any opportunities to get involved and share your experiences and views.

I will be meeting with LUPUS UK’s Board of Trustees at the beginning of February and our National Council (with representatives from our Regional Groups) at the end of the month. We’ll be working hard to plan our activities for the rest of this year and continuing to improve everything we do. Look out for any announcements on our website and social media pages.

LUPUS UK is your charity and we are here to help. Please get in touch with me or one of my team if you need anything. I hope we can all work together through this next stage of the COVID-19 saga and build a better future for people affected by lupus.

Paul Howard
Chief Executive



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