What we do:
Around 1.8 million people in the UK are at heightened risk of COVID-19 due to immunocompromised conditions. Our group tirelessly advocates for their protection, promoting a range of prophylaxis drugs and preventive measures, both pharmaceutical and non-pharmaceutical including support systems. We support all vulnerable individuals across the four nations, as identified in the NHS England RAPID-C19 report, and assist those living with/caring for them, recognising the significant burden they carry.
We advocate for affected individuals by influencing healthcare policies and practices nationally and internationally. Through lobbying, public campaigns, and partnerships, we aim to create a more inclusive, responsive, and safer healthcare system. Our professional engagement with government departments like UKHSA, and national bodies such as MHRA and NICE, has established new pathways for this previously overlooked population.
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We offer a supportive community of peers, sharing information and resources to help navigate the healthcare system. Our collective knowledge helps members to access treatments and entitlements, empowering them to live safer, healthier lives.
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Our goal is to empower people with knowledge to allow them to better advocate for themselves and engage society, politicians, pharmaceutical industry, and decision makers in meaningful discussions around how we can support the immunocompromised and ensure that Government policy is improved to reflect the unmet needs of those in this position.
ResourcesFollowing the start of ‘Evusheld for the UK’ in spring 2022 as an individual patient group, the campaign quickly gathered momentum. We joined forces with various national charities, clinicians and politicians and the media to help raise the issue of the lack of support for immunocompromised individuals.
In the summer of 2022 we were approached by Jess Burley who headed up The&Partnership and mSix&Partners, who volunteered their expertise to work with us to produce the Forgotten 500K campaign. This was a hard-hitting, coordinated, national umbrella campaign that brought many charities together to highlight the issue and raise awareness with both the public and politicians. Through social media, parliamentary engagement, and media partnerships, the campaign demanded access to life-saving treatments such as Evusheld, resonating deeply with the public and policymakers alike.
At its crescendo, there were full-page adverts and journalistic stories in most of the national tabloids, recorded media interviews with both local BBC and radio across the four nations, BBC Breakfast time, National BBC News, Radio 4, Channel 5, The Media Leader, Tortoise Media ThinkIn, Andy Coulson’s Crisis What Crisis, Forgotten 500K podcast and Silent Vigil Parliament Square – Forgotten 500K.
The impact of the work we are doing has been far reaching, and this has been recognised by invitations to be involved in the Global COVID Community Council, Global Immunocompromised Health Coalition and International Immunocompromised Advocacy Network (IIAN).
The Global COVID Community Council fosters relationships with leading patient organisations worldwide, focusing on COVID-19. It ensures patient insights inform global programmes. We are one of eight council members and have submitted to key conferences such as ECCMID 2024 in Barcelona, ICOPH 2024 in Bangkok, and ID Week 2024 in Los Angeles.
In June 2023, we attended the inaugural conference for groups representing the immunocompromised in Barcelona, with global participants including Canada, Greece, Israel, and more. This event facilitated information exchange and collaboration. Following the conference, the International Immunocompromised Advocacy Network (IIAN) was formed, adding members from various countries and organisations. IIAN has released a Call to Action to governments and is now engaged in research and advocacy. We are proud to be part of the steering committee, driving this initiative.
One of the things that has been greatly highlighted whilst we have been working with our group members is the significant impact shielding for years has on their and their families mental health. This had never been recognised and through our involvement we have been able to demonstrate with real-life feedback on how devastating and far reaching this is.
Read the studies:
The Mental Health Impact of the COVID-19 Pandemic on Shielders and Their Family Members (January 2022)
Join us in our mission to protect the immunocompromised – get involved today and make a difference.
There are lots of ways you can help our campaigning efforts or get support.
If you want to get involved, have questions, or need support, please reach out to us using the contact form. We'd love to hear from you.
