RAIRDA and its member charities have launched a short survey aimed at all adults with a rheumatic condition in the UK. We want to understand whether those who are eligible have been able to access a fourth dose of the coronavirus (COVID-19) vaccine as part of their COVID-19 vaccination schedule as well as gain insights on other important issues related to COVID-19.
To be clear this ‘fourth dose’ is a ‘booster’ dose. You can get a booster (4th dose) from 3 months (91 days) after your 3rd primary dose. Eligibility criteria for the third and fourth dose of the COVID-19 vaccine can be found via the following link: https://bit.ly/3D0m6KR
Please only complete the survey if you have a rheumatic condition AND believe yourself to be eligible for a third/fourth dose of the COVID-19 vaccine.
Examples of rheumatic conditions include:
Forms of connective tissue disease (for example: lupus, Sjogren’s Syndrome, scleroderma)
Form of systemic vasculitis (For example: Behcet’s or types of ANCA Vasculitis like GPA)
We have published a safe at work letter for people with rheumatic diseases who are located in England and are at higher risk from Covid-19 to use in discussion with their employers about how to keep safe at work, updated as government guidance changes.
We want to highlight that the Government have confirmed that, because of their continuing increased risk from Covid, people who are immunosuppressed are still advised to:
“Work from home if this feels right for you – if you cannot work from home, speak to your employer about what arrangements they can make to reduce your risk”
We are concerned that this specific guidance for immunosuppressed people may have been lost in the overall guidance changes and we therefore urge employers to continue to do all they can to support requests to work from home from your employees at highest risk from Covid. To protect those who cannot work from home, reasonable adjustments and strict adherence to risk reducing measures (set out in working safely guidance) remains as important as ever.
In the letter, we have highlighted the following key points:
Ask people who test positive for Covid to follow Government guidance and stay at home
Enable working from home wherever possible for people at highest risk who request to do so
Join us in calling on the UK Government to continue free tests for people who are eligible for COVID-19 treatments, their families and close contacts.
The UK Government is ending free COVID-19 tests for everyone excluding people at highest risk of severe illness from April 1st. The impact this will have, is that family, friends and carers run the risk of exposing vulnerable people to infection unless they can afford to keep paying for tests.
RAIRDA has joined LUPUS UK, Scleroderma and Raynaud’s UK, MS Society, Blood Cancer UK and Kidney Care UK as well as other charities in voicing our concerns to the UK Government in considering the needs of all higher-risk patients (like people with RAIRDs) and assessing their risk of catching COVID-19. No person should have to face being at risk because they simply can’t afford a COVID-19 test. We all have the right to be protected.
We and other charities are calling the on Government to:
continue to make adequate numbers of lateral flow tests available for free for those 1.3 million people that are eligible for Covid-19 treatments, their households and personal contacts, regardless of whether they have symptoms or not; and
to provide new money to the NHS and Local Authorities to continue to fund regular testing of frontline health and social care
To help us #PlanToProtect, fill out this EMAIL TEMPLATE and send it to your local MP
To find your local MP you can use your postcode or a place name and insert it into this Find MPs service. Once you click on your local MP their contact details will appear including their email.
The MELODY (Mass evaluation of lateral flow immunoassays for the detection of SARS-CoV-2 antibody responses in immunosuppressed people) study will use home antibody testing to understand how well immunocompromised patients respond to the Covid-19 vaccine.
The study is aiming to recruit people who have received solid organ transplants, people with rare autoimmune diseases and people who have had a diagnosis of blood cancer.
Who can take part in this study?
A random sample of 36,000 adults who have received a solid organ transplant, or who have been identified by the National Disease Registration Service (NDRS) as someone who may have a rare autoimmune disease or a form of blood cancer are being invited to take part in the study.
If you are a solid organ transplant recipient, you can sign-up now by visiting the site (you need your NHS number) – CLICK HERE
People who have blood cancer or rare autoimmune diseases will be receiving personal invitation letters soon. The researchers have 36,000 antibody test kits for the MELODY study, which is enough to achieve valid results but not enough for everyone with these conditions to participate. Invitations are therefore going out to a random sample of those people who are eligible.
Who is running the study?
This research is being run by doctors and researchers at Imperial College London, NHS Digital, NHS Blood and Transplant, University of Southampton, University of Cambridge, University of Nottingham and Ipsos MORI.
The research is funded by the Medical Research Council (MRC) in collaboration with health charities – Kidney Research UK, Blood Cancer UK, the Cystic Fibrosis Trust, and our member charity Vasculitis UK.
What does the study involve?
The study involves completing a home COVID-19 self-testing antibody kit. Full instructions will be provided with the kit. There is no obligation to take the test if you agree to be sent it.
Once you have completed the test, you will be shown the outcome of the antibody test within 10 to 15 minutes, but please be aware that the results are not 100% accurate at an individual level. A positive test does not necessarily mean that you are fully protected from getting COVID-19 or passing on the virus, and a negative test does not necessarily mean you do not have antibodies that may provide protection against COVID-19. Whatever your test result, it is important that you continue to follow the current Government advice.
You will also be asked to complete two short surveys collecting information about you, your household and current health status. In the first survey you will be asked for your consent to take part and register for the study. In the second survey, sent after registering, you will be asked to take a photo of your test result and upload it as part of the survey. You will be asked to complete the survey even if you have not done the test.
You can learn more about how people are selected and invited in The MELODY Study Fair Processing Notice, here.
Additional information
The MELODY study Participant Information Sheet (PIS) can be downloaded here: MELODY PIS (.pdf)
Frequently asked questions, including information on GDPR and Ethics can be found here: https://ipsos.uk/antibodyFAQs
To contact the survey helpline, please contact Ipsos MORI via telephone (0800 819 9150) or email (UK-MelodyStudy@ipsos.com)
Are you being treated with steroids for your rheumatic condition? We need your help to test a new questionnaire about steroid impact on quality of life for people living in the UK, USA or Australia.
UWE Bristol has launched a study looking into the impact of rare rheumatic diseases on peoples’ health related quality of life. They have performed in-depth interviews with 60 patients in the UK, USA and Australia to identify the most important impacts of being treated with steroids and how that impacts on peoples’ quality of life. The interview data has been used to develop a questionnaire which should be useful for anyone treated with steroids for their rheumatic disease, e.g. vasculitis, lupus, scleroderma, Sjogren’s, myositis, polymyalgia rheumatica and giant cell arteritis.
The final Steroid PRO questionnaire will be used in clinics or clinical trials to measure the impact of steroids on peoples’ quality of life (and hopefully highlight the true benefits of novel treatments that reduce the need for steroids in the future).
Here’s the direct link to the survey if you would like to read more or take part: https://bit.ly/3Hqy2GS
The Rare Autoimmune Rheumatic Disease Alliance 