Updates and news

Survey shows nearly a quarter of people with rheumatic conditions are struggling to get access to a vital third primary jab

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. 


References

  1. NHS England, COVID-19 vaccinations – Assuring implementation of JCVI guidance for vaccinating severely immunosuppressed individuals with a third primary dose https://www.england.nhs.uk/coronavirus/wp-content/uploads/sites/52/2021/09/C1427-covid-19-vacc-assuring-implementation-of-jcvi-guidance-vaccinating-severely-immunosuppressed-individuals.pdf?
  2. Joint Committee on Vaccination and Immunisation (JCVI) advice on third primary dose vaccination, 1st September 2021 https://www.gov.uk/government/publications/third-primary-covid-19-vaccine-dose-for-people-who-are-immunosuppressed-jcvi-advice/joint-committee-on-vaccination-and-immunisation-jcvi-advice-on-third-primary-dose-vaccination
  3. 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
  4. 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

Charities launch rapid third primary vaccination dose survey

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

Statement on third primary COVID-19 vaccine doses for people with rare autoimmune rheumatic diseases

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’s story: “With lupus, you don’t know when your next flare will be.” 

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 

RAIRDA calls for specialised centre within Wales

RAIRDA recently submitted evidence to the Welsh Government in response to their consultation on guidance for services for people with arthritis and long-term musculoskeletal conditions.

We told the Welsh Government that there is a clear need to improve care for people with RAIRDs in Wales. Evidence from our surveys indicates that patients in Wales, on average, have more problems with their care than those in the rest of the UK. Whilst there is some good care in Wales and some clinicians with specific expertise in RAIRDs, we believe the lack of a commissioned specialised centre in Wales is a major reason for this difference.

Current Issues in Wales

The figures outlined in this blog are taken from fresh analysis of a UK-wide survey of people with RAIRDs conducted in 2018, to which we received 2229 responses (125 from people in Wales) and from a new survey conducted in June 2021 of 126 patients living in Wales. In addition we’re extremely grateful to the small group of patients in Wales commented on our draft submission to the Welsh Government.

Read our full 2018 report here.

On average, patients in Wales report worse care than those in the rest of the UK

Our 2018 survey indicated that people with these condition in Wales, on average, have greater issues accessing care for their conditions than in the rest of the UK.

We found that:

  • In Wales 35% of respondents said they waited over 6 months to see a specialist when waiting for a diagnosis. In the rest of the UK the figure was 29%.
  • 27% of respondents in Wales said they had a coordinated plan in place for their care, compared to 40% across the rest of the UK.
  • 9% of respondents living in Wales reported they had been able to access care at a joint clinic with doctors from multiple different specialties compared to a, still low, 17% across the rest of the UK. This is despite the that fact 93% of UK survey respondents reported seeing clinicians from multiple specialties.
  • In Wales, 62% of respondents said they weren’t confident in their GP’s understanding of their condition, compared to 53% in the rest of the UK.
  • In Wales, 9% of respondents reported being offered psychological support to help them manage the impact of their condition on their mental health, compared to 15% in the rest of the UK.
  • Fewer respondents from Wales had a specialist nurse involved in their care, and of those that did, fewer found it easy to contact their nurse compared to the rest of the UK.
  • In addition, in Wales, 38% of patients said they had accessed private healthcare for their condition compared to 28% in the rest of the UK. This indicates less patients are able to get the care they need through the NHS.

Meanwhile, comments collected in our 2021 survey made clear how serious issues were in parts of Wales:

“Patients with chronic ill health are being failed in Wales. There is no support, no monitoring, no bloods taken, no medication. I worked hard in my career. For the past eleven years I have become incapacitated by my illness. I have lost my career and am now unable to afford private care.”

“My diagnosis 12 years ago took so long and was traumatic, I became so much worse than I needed to before diagnosis and treatment, this fear stays with me.”

“I have felt totally abandoned for the last 5 years since being diagnosed.”

“Having to fight the health board for minimal contact.”

“I’m often waiting for months despite appealing for help.”

Whilst some patients did report good, responsive, and coordinated care, comments like the above illustrate that many patients in Wales face serious issues.

Given the differences between the rest of the UK and Wales, there need to be specific proposals from the Welsh Government to improve outcomes for people with rare autoimmune rheumatic diseases.

Impact of COVID-19 pandemic on access to care

Our June 2021 survey asked patients what impact the pandemic had on the care they received:

  • 41% said it had a major negative impact
  • 29% said it had a minor negative impact

There were clear variations in how responsive services had been able to be, and some services had delivered good care despite the pressures of the pandemic. However, some very ill patients reported issues getting care.

“Whilst face to face appointments were swapped to telephone appointments during the pandemic when I had issues and new symptoms I was seen in clinic within the same week.”

“I had my rheumatology appointment cancelled during March 2020. I have not heard anything more from the hospital since. I am unwell and was hoping to start a new treatment for the conditions I’ve had diagnosed. I feel there is no help whatsoever and as if I have fallen off the radar completely. Just left in pain and forgotten about.”

“I went privately as I didn’t know who to contact during a flare. The consultant explained it will be due to COVID that the rheumatology nurses don’t answer the phone, or reply to messages left”

Rheumatology staffing issues affect RAIRD patients

Comments we received from patients in 2021 from patients provide further evidence of the extent of staffing issues in Wales. For example:

“The rheumatology department is vastly understaffed, and the waiting list for clinics are long. Therefore, conditions deteriorate and end up needing more intensive intervention, making the rheumatologists job much more difficult and burdening the waiting list more.

“My rheumatologist left the health board over 2 years ago and I have been left in limbo with care.”

Workforce issues have contributed to overstretched services and it’s evident to patients that healthcare professionals do not have the time to deliver the quality care they aim to.

Issues with access to specialist care in Wales

In Wales, patients may be referred onto another hospital in Wales for care where a consultant or team is understood to have additional expertise caring for a certain rare disease, or onto a specialised centre in England. However, doing this through the NHS is a difficult process and can require an individual patient funding request (IPFR) to be made by clinicians.

In their comments, respondents to our 2021 survey told us:

“I feel the Welsh NHS has abandoned me, I’m fortunate I can pay to access treatment and consultation in England, but there is a desperate need for a centre in Wales to treat patients like myself with specialist care”

“I was under the care of a health board outside of where I lived initially and as it was a specialist centre I had very good care. However, I’ve been repatriated to my local health board and since then the care I’ve had has been awful, in fact it’s been non-existent.”

Given the disparities between care in Wales and care in the rest of the UK, there is a clear need to improve access to specialist care for RAIRDs in Wales.

Key recommendations

We believe there is compelling evidence to support specific actions for patients with rare autoimmune rheumatic diseases.

A specialised, tertiary centre (or centres) for these conditions should be formally commissioned in Wales by the Welsh Health Specialised Services Committee.

Recognising that many people with these diseases cannot get all the care they need from their local hospital, other UK nations specifically commission certain hospitals to deliver specialised centres specifically for these diseases. Patients are referred to these centres by other clinicians in local hospitals and these centres have to meet certain criteria to qualify as specialised.

The Welsh Government can help close the gap between Wales and the rest of the UK by commissioning a specialised centre.

Some patients will continue to need care from hospitals in England – this is because there are some patients who need to see a clinician with further expertise than can exist in Wales. For example, some patients in the north of England travel to Cambridge for their care, despite there being a specialist centre in their region. However, a specialist centre is still needed to drive improvements in care in Wales.

A specialised network could further increase the impact of a new specialised centre

To effectively amplify the benefits of a specialised centre, we support the use of specialised networks to support local rheumatologists to care for these conditions when appropriate. These networks exist in other parts of the UK and often use video conferencing to allow clinicians to seek advice on treatment and make sure care is delivered consistently.

These networks function best when they are centred on a recognised specialised centre, which is properly funded to invest time into supporting the network.

Additional recommendations

Other recommendations in our response include:

  • Action on workforce development, education, and recruitment in rheumatology and investment in wider multidisciplinary teams including specialist nurses and clinical psychologists in line with the British Society of Rheumatology’s recent report ‘Rheumatology workforce: a crisis in numbers’.
  • Improve access to rapid advice through advice lines and department email inboxes.
  • Action to ensure face-to-face appointments when needed.
  • Specific recommendations to support rare autoimmune rheumatic diseases, rather than recommendations covering rare diseases in general.

We hope that the evidence provided in our response fosters a sense of urgency. Specific actions to improve care for rare autoimmune rheumatic diseases, and support clinicians to deliver this, need to be taken by the Welsh Government.