Survey shows poor communication around COVID-19 vaccine and treatments for people with rheumatic conditions

We would like to thank everybody who took part in our survey of people with rheumatic conditions about the fourth coronavirus (COVID-19) vaccination dose. The purpose of the survey was to better understand whether those eligible have been able to access a fourth dose of the COVID-19 vaccine as part of their vaccination schedule, as well as to gain insights on other important issues related to COVID-19. The survey was held between 23rd March 2022 and 7th April 2022. 

Survey findings

  • There were a total of 526 responses from England, Scotland, Wales, and Northern Ireland. 
  • 65% of respondents had received a fourth dose of the COVID-19 vaccination. 
  • Over half (62%) of respondents found accessing their fourth dose to be ‘very easy’ and 59% found ‘no part of the process to be particularly difficult’. 
  • Although when it came to communication, 40% of respondents had no form of contact from the NHS about their fourth dose. 
  • With regards to access to antiviral treatments, 40% reported they had no form of contact from the NHS about the treatments, with half (50%) finding the process to get referred to a COVID medicines delivery unit (CMDU) by their GP/consultant to be ‘very difficult’.

Overall, the findings suggest people with rheumatic conditions generally seemed to have found accessing their fourth dose of the COVID-19 vaccination to be an easier experience compared to their third dose.  However, there are still persistent issues with communications for both fourth vaccine doses and  COVID-19 antiviral treatments, with 2 in 5 people reporting no proactive contact from the NHS to inform them of their eligibility.

Our call to action 

We know from previous research that people with rheumatic conditions are considerably less likely to generate antibodies after two doses of a COVID-19 vaccine. [citation] Moreover, people with rare autoimmune rheumatic conditions are at greater risk, being twice as likely to die from COVID-19 or a complication related to the virus compared to the general population [1]. Therefore, it is imperative that this vulnerable group has timely access to new and existing treatments to ensure greater protection from COVID-19 and its variants [2].

RAIRDA has identified 3 areas that must be addressed to improve the situation:

  1. For healthcare professionals to be better informed on RAIRDs and the impact of the various diseases and their treatments on immunity.
  2. Improved communication to health care providers on who is eligible for vaccines and treatments. 
  3. Accurate and up-to-date digital coding of NHS records to identify RAIRDs patients, and to have simple systems to change codes when they are incorrect. 

Next steps 

Following the results of our survey, we have taken steps to brief NHS England on the issues highlighted in our survey and are working closely with them to improve communications for people with RAIRDs. We will also raise the issue of equitable access to COVID-19 vaccinations/treatments with Maggie Throup MP, the Vaccines Minister, in an upcoming coalition meeting. 

References

  1. Megan Rutter, Peter C Lanyon, Matthew J Grainge, Richard Hubbard, Emily Peach, Mary Bythell, Peter Stilwell, Jeanette Aston, Sarah Stevens, Fiona A Pearce, COVID-19 infection, admission and death among people with rare autoimmune rheumatic disease in England: results from the RECORDER project, Rheumatology, 2021;, keab794, https://doi.org/10.1093/rheumatology/keab794
  2. National Institute for Health Research (NIHR): OCTAVE trial: Initial data on vaccine responses in patients with impaired immune system https://www.nihr.ac.uk/news/octave-trial-initial-data-on-vaccine-responses-in-patients-with-impaired-immune-systems/28529

RAIRDA launches fourth vaccination dose survey

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)
  • Giant Cell Arteritis
  • Rheumatoid arthritis
  • Psoriatic arthritis
  • Axial spondyloarthritis (including ankylosing spondyloarthritis)
  • Polymyalgia Rheumatica

This survey will close on midnight Thursday 7th April 2022.

Safe At Work: letter to employers, March 2022

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
  • Reasonable adjustments

Download the Safe At Work letter and share it with your employer as you have discussions about your safety at work.

Take action against ending free COVID-19 testing kits

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.

MELODY Study: An Overview

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)