Who we are:
For those who are immunocompromised, the threat of COVID-19 persists. Many receive little or no effective protection from vaccines and are at a much higher risk of severe health outcomes or even death. This has forced them to continue living restricted lives, with many still shielding or avoiding public places like hospitality venues, public transport, and entertainment events. Without financial support, they face significant physical and mental health challenges through no fault of their own.
We collaborate with various organisations to represent patients and push for faster, more effective approval processes for COVID-19 treatments, aiming to empower clinically vulnerable individuals to live healthier, safer lives.
In spring 2022, Nikola Brigden, Mark Oakley, and Martin Eve founded our patient advocacy group with a mission to get our voices heard and campaign for the availability of the drug Evusheld/Sipavibart both privately and via the NHS. Despite being a non-funded, voluntary group with no political or industry affiliations, our hard work and the support of many have led to significant victories.
We are recognised as a UK-wide patient support group and a key voice in the campaign to protect the immunocompromised. Our recognition as a Stakeholder with NICE allowed us to influence decisions regarding Evusheld. We have also been acknowledged by the Department of Health & Social Care, UK Health Security Agency, NHS, and the Government, and provided evidence to Baroness Hallett’s COVID-19 Inquiry as the nominated patient group for the All-Party Parliamentary Group for Vulnerable Groups to Pandemic (APPG VGP).
Over the past two years, we have formed valuable alliances with over 25 national UK charities, supportive clinicians, specialists, politicians from all parties, journalists, and drug companies. We were involved as the lead patient group in helping to deliver the clinical survey and call from over 100+ clinicians across the country for the delivery of Evusheld. Since then, we have lead the way on the submission of coalition letters to ministers and government departments, including hand-delivering letters to the Prime Minister on two occasions. We have also been recognised by institutions such as Oxford University History of Science Museum, and were involved in the planning of the Covid Exhibition, which was also taken to Parliament to display to MPs.
We have collaborated with Lord Mendelsohn, Daisy Cooper MP, Andrew Gwynne MP, the APPG for Vulnerable Groups to Pandemic, Dr. Lennard Lee, Prof. Antonio Pagliuca, Prof. Alex Richter, and mSix&Partners. Together, we spearheaded the political campaign, engaging many MPs across all parties. Our efforts included motivating members to contact MPs, resulting in significant parliamentary support and numerous oral and written questions. We also created the Forgotten 500K national media campaign, gaining widespread coverage. We have been appointed as the patient advocacy and advisory group to the APPG Vulnerable Groups to Pandemic, and we have provided lengthy witness statements and evidence packages to both module 3 and module 4 of the Covid Inquiry at the request of Baroness Hallett.
Our focus now is on ensuring rapid approval pathways for new COVID-19 medications. As we campaigned, it became apparent that many provisions to protect the immunocompromised are being withdrawn, causing further suffering. In April 2023, we renamed our group from Evusheld for the UK to Forgotten Lives UK to address the broader issues facing the immunocompromised community.
Our central aim is to collaborate with various organisations to represent patients and advocate for changes to the lengthy approval processes, which NICE has admitted are too slow and not tailored for the unmet need of COVID-19 prophylaxis and treatments. We are working to ensure that there is an equitable universal access to such drugs through the NHS as well as the private market. Alongside this we continue to work to make sure the needs of the immunocompromised are considered and met in policy decisions at both national and local level in order to allow them to live more normal lives with basic protections and considerations.
Co Lead and Founder
Nikola founded the group as her husband was diagnosed with mantle cell lymphoma in May of 2021. He had been through chemotherapy treatments and had a stem cell transplant in November 2021. Although he had recovered really well, he had no protection from COVID-19 due to the immunotherapy maintenance drug he has to take to maintain remission, so was left shielding and unable to integrate back into society and work.
Co Lead and Founder
Mark founded the group as a chronic pulmonary sarcoidosis sufferer who is immunosuppressed through his medication. He had to shield from the start of the pandemic, often living separately from his family, and was forced to close his business. Mark shielded for nearly 1,000 days and still lives a restricted life. Seeing how this situation affected his family and many others drives his work with Nikola and Martin to push for better protection for those still living under these conditions daily.
Founder
Martin founded the group as he has rheumatoid arthritis and kidney disease and was advised to shield at the beginning of the pandemic due to the medication he takes. Prior to this, Martin travelled the world in his role of Professor of Literature, Technology and Publishing at Birkbeck, University of London. Due to the deterioration of Martin's health conditions, he has had to take a step back from the group, but still advises on a consultancy basis.
Many organisations, medical practitioners, charities, and MPs support the use of Evusheld/Sipavibart for immunocompromised patients.
More than 100 clinicians also called on the Government in August of 2022 to make a preventative treatment for COVID-19 available in the UK to the approximate 1.8M clinically vulnerable people who may benefit from it.
The prophylactic monoclonal antibody treatment Evusheld was approved for use in March 2022, but it was not made available on the NHS, when it was being used in 28 countries, including the United States, France and Israel.
The All Party Parliamentary Group for Vulnerable Groups to Pandemic had asked Dr. Lennard Lee, academic lecturer and medical oncologist at Oxford University, to carry out a clinical consultation to ask clinicians how to help the people still at risk who do not have protection from vaccination.
125 clinicians responded across 17 medical specialities to the largest-known consultation in the UK, if not the world, about this new step of the pandemic response.
The consultation statement sets out the clinical benefits of making monoclonal prophylactic antibody therapies available – detailing how it helps from an individual level, to prevent infections, hospitalisation, and deaths. It also would help improve mental health and give immunocompromised people the confidence to reduce shielding. The statement also suggested it would help the broader health care system by reducing demand on the primary care, emergency services, and intensive care if there were a reduction in serious infections in immunocompromised people.
Read the National Clinical Expert Statement.
We have also worked with Dr. Luca Bernardi of Liverpool University and Dr. Jo Daniels of Bath University, in conjunction with the APPG VGP in the production of the Forsaken but Engaged. An inquiry into the psychological aspects of COVID 19, mental health, and political engagement survey, which was unique in highlighting how both the mental health and political engagement of the immunocompromised are impacted and launched this in a widely attended debate in Parliament in December 2023.
We operate totally independently without any external funding or affiliations with any pharmaceutical companies. The campaign is driven solely by the voluntary efforts of three individuals – Nikola Brigden, Martin Eve, and Mark Oakley – who serve as patients and carers, receiving no compensation for their work. We are supported by voluntary donations of time, advocacy, and skills by many, including from the immunocompromised community, as well as academia, healthcare, industry, and the media.
Lord Mendelsohn, Tracey Allen and the APPG for Vulnerable Groups to Pandemics (APPG-VGP) for their unwavering support of the immunocompromised population of the UK.
Dr. Lennard Lee for being the champion of immunocompromised patients. Lennard was lead of the UKCOVID Cancer programme which showed immunocompromised cancer patients were at risk, he also worked as clinical lead for the APPG VGP to ensure systematic steps are taken to prioritise the needs of the most vulnerable in our community.
Amanda Dantuma, of Dantuma Design, designed our logo and brand and has been a source of constant support throughout the campaign with her donations of time and talent; she has also assisted with the design of infographics for social media amongst other assistance. We are very grateful to her for her work. Please check out her site.
The “Forgotten 500K Campaign” was designed and supported by The&Partnership and mSix&Partners. The campaign represented a national campaign brought together across various facets of both traditional and social media and was produced in a short space of time and on a limited budget, and had to adapt to quickly changing national and political events during the autumn of 2022. The success of the campaign bears testament to the expertise, talent, organisation and management skills of those involved.
Our website was designed and built by Vivid Imagination.
Samuel Davies and Rob Boxhall for their help with the administration of the Facebook Group, expert knowledge and continued support.
Dr. Penelope Cream and Dr. Dorothy Frizelle, and the ACP-UK for their ongoing mental health support and assistance with producing crucial data on the impact of shielding in the immunocompromised and their families.
Dr. Luca Bernadi (University of Liverpool) and Dr. Jo Daniels (University of Bath) for their inquiry into the psychological aspects of COVD-19, mental health and political engagement of immunocompromised people.
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.
