We are pleased to see that NHS England have updated the COVID-19 vaccination booking system on their website to include a category for third primary doses. This is a welcome update and follows RAIRDA’s calls to the government to go further in its commitment to protect vulnerable people by developing a self-referral mechanism for third primary doses, when booking a vaccination appointment.
If you have been informed of your eligibility for a third primary dose of the COVID-19 vaccine by a GP or consultant, you can now book your appointment using the link below.
RAIRDA and its member charities are calling for urgent government action to address concerns about the roll-out of third primary doses for the COVID-19 vaccine. Our recent survey suggests that nearly one quarter (22%) in England with a rheumatic disease, whose treatment affects their immune system, are still unable to access a third primary COVID-19 vaccine dose. This is despite a national commitment to offer a third primary dose to immunosuppressed people by 11 October [1].
Two in five (41%) respondents, in England, also said they believed they received a booster jab instead of a primary dose. This raises concerns that some primary doses are being misclassified as boosters, which could prevent patients from accessing a recommended booster dose six months later.
Additional findings
Supported by the National Axial Spondyloarthritis Society (NASS), National Rheumatoid Arthritis Society (NRAS) and Arthritis and Musculoskeletal Alliance (ARMA) the survey findings in England found that:
More than one in three (38%) reported no proactive contact from the NHS to inform them of their eligibility for a third primary dose
Of those who had received their third primary dose, nearly half (45%) said it was much more difficult to access than their first or second.
17% of patients taking rituximab, a treatment for those with very serious illness that is proven to have a major impact on vaccine protection, have still not received their third primary dose.
Two in five (42%) people who completed the survey found it difficult to get an acknowledgement, or evidence from a healthcare professional to confirm eligibility in order to secure a third primary dose.
Guidance
The Joint Committee on Vaccination and Immunisation (JCVI) had issued guidance earlier this year recommending three primary COVID-19 vaccine doses for people who are immunosuppressed [2]. A booster jab would normally follow six months later.
Risk from COVID-19 and vaccine protection
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 [3]. 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 [4].
Our asks
The lack of clarity and communication means that many continue to remain inadequately protected as we approach Winter. As a result, we are calling for the government to go further in its commitment to protect vulnerable people from COVID-19 and work with NHS England and NHS Improvement to increase uptake of third primary doses. This includes:
clearer information for healthcare professionals and patients on third primary dose eligibility.
the accurate recording of third primary doses to ensure people have access to COVID-19 booster vaccinations.
the development of a self-referral mechanism for third primary doses on the national vaccine booking system, which will allow appointments to be booked more easily.
Advice and support
We urge those who think they are eligible for a third primary dose, and have not yet been contacted by the NHS, to contact their consultant for advice. Our member charities are also able to offer support and information.
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
Along with a number of other charities, RAIRDA and its member charities are supporting a rapid survey aimed at all adults with a rheumatic condition in the UK. We want to understand the progress of the roll-out of third primary COVID-19 vaccination doses for people who are severely immunosuppressed.
We have heard from patients reporting difficulties accessing third primary doses. We hope this survey will help us to understand the scale of any issues, what has worked well, and what has not.
Please complete the survey whether or not you have received your third primary vaccination dose. You can also complete the survey if you have a rheumatic disease but do not think you are eligible for a third primary dose. This is a rapid survey and it will close on midday Monday 8th November.
Full guidance on third primary doses can be read here.
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)
Over the past few weeks, RAIRDA’s member charities have had hundreds of calls from patients reporting problems arranging the third primary COVID-19 vaccination dose they are eligible for.
There are tens of thousands of people in the UK with rare autoimmune rheumatic diseases. Whilst individually uncommon, people with these diseases therefore represent a significant proportion of those deemed clinically extremely vulnerable to the virus. Research has shown people with these diseases were significantly more likely to be infected with, and die from, COVID-19 during the first few months of the pandemic in the UK.
Given many of these people are on strong immunosuppressive treatment, they may not mount a strong immune response after two doses of COVID-19 vaccine.
Whilst we understand that the first two doses of vaccines should have given some degree of protection to patients, there is a clear need for a third primary doses for this group to give them the best protection, ideally timed to minimise the impact of their immunosuppressive treatments.
For England, full guidance on who is eligible for a third primary vaccination can be read here in Annex A. Guidance from the British Society for Rheumatology is that all rheumatology patients, aside from those solely on hydroxychloroquine and/or sulfasalazine, should receive a third dose to enhance primary vaccination.
We passed on the patient concerns we had heard in England to the Department of Health and Social Care who have given us the following guidance:
If you have received a letter from your consultant or GP advising on when you should have your third dose, you can take the letter to a walk-in vaccination site. Vaccinators will not be able to administer the vaccine without this letter.
The NHS in England has sent texts to those eligible last week and letters should be arriving this week.
In the meantime, any patient who has not yet been contacted but thinks they may be eligible for a third dose can contact their consultant for an update.
However, we know that some patients find it difficult to contact their consultant or get a timely response to queries, and that many consultants, hospital departments, and GPs are currently over capacity.
The above guidance applies in England. However, we understand there are issues, to a lesser or greater extent, across the UK and are working to relay the concerns of patients, and to obtain similar guidance from health departments, in the other nations of the UK.
In some areas, we have heard positive feedback from patients about hospital departments who seem to have been able to contact all their patients. To us, this is just another example of the importance and the advantages of well-resourced, well-organised, and well-coordinated care for these conditions.
Due to the ongoing issues we hope the health service will explore a self-referral mechanism for people who need a third primary dose which could keep the need for GP and consultant involvement to a minimum.
Dalila, who lives in Cardiff, was diagnosed with systemic lupus erythematosus during childhood. In this blog for #LupusAwarenessMonth she talks about her experiences with the condition and the differences in the care she’s received between England and Wales.
Diagnosis
When I was diagnosed, I couldn’t understand that this complex condition doesn’t have a cure and that it wouldn’t be like many of the colds I’d had in the past.
My parents were taking care of everything and many of my memories during that time are blurred. Eventually, I understood that my lupus meant I had a different life to most of my friends. For example, I needed to take extra care when planning activities in the sun or that could cause me too much stress.
I also learned that: being regularly in and out of hospital wasn’t unusual, active lupus can result in organ damage, regular doctor’s appointments are part of my routine, and I should always carry my medication with me.
These lessons were difficult to learn but, in the end, they helped me to improve my quality of life. In 20 years living with lupus, I’ve been lucky to meet wonderful consultants, nurses, and other health care staff that have encouraged me to fight off every flare. They’ve given me strength during my most difficult times, during painful medical procedures and when making tough decisions.
Kidney damage
After being diagnosed with lupus whilst living in England, I was diagnosed with lupus nephritis, meaning my lupus has caused damage to my kidneys.
This was a complete shock to me as I had no visible symptoms. I was scared my nephritis could progress very quickly, but thankfully I was referred to a specialised lupus consultant who managed my condition very professionally, without any delay, and with great accuracy. Together with a coordinated medical team they got my flare under control and stabilised my kidneys.
Regular monitoring and open communication kept my lupus, and my own stress about my health, well under control.
With lupus, you don’t know when your next flare will be. Whenever you have a flare, you need to be able to get help quickly and you need to have support from healthcare professionals that not only know about lupus, but your individual condition.
No lupus patient should live in a stressful and uncertain situation where they don’t receive responsive and specialised medical attention. This is important to help reduce organ damage to the minimum.
Care in Wales
Years later I moved to Wales, and I fell in love with the country. Unfortunately, after an intense search, I couldn’t find a lupus specialist team in the area. Nor was I allowed to remain under the care of the team in England, even though when they were willing to continue my care. I was able to keep my lupus under control for some time, but through monitoring inconsistencies and lack of immunosuppression being prescribed my condition continuously flared up until it was decided to restart the treatment that I was prescribed back in England.
There are big differences between the care I have had in England and in Wales. For instance, my nephritis came back and being referred to see a nephrologist was difficult even though I had kidney damage. We also don’t have a telephone adviceline or lupus nurse to contact about issues which arise at short notice.
Whilst some consultants have been very kind and tried to help in every possible way, they’ve also been honest and admitted that they don’t know what is best for lupus patients.
The experience of people like Dalila is why we are calling for change in how people with rare autoimmune rheumatic diseases are cared for in Wales.
We’re calling for:
A properly commissioned specialised centre for rare autoimmune rheumatic diseases in Wales.
A network, where this specialised centre can support local hospitals to deliver better care.
Urgent action to resolve workforce issues in rheumatology in Wales
You can read more about our campaign, and the evidence we’ve submitted to the Welsh Government, here.
The Rare Autoimmune Rheumatic Disease Alliance 