Author: RAIRDA

New research published last week showed that in March and April 2020, as COVID-19 hit the UK, the risk of death among people with RAIRDs (rare autoimmune rheumatic diseases), in England increased more than it did among the general public. In this article, we explain the importance of this research.

Why is this research important?

As well as showing a generally higher risk of death for people with RAIRDs than the general public, other key findings from the research included: the fact that for people with RAIRDs, being female did not seem to reduce the risk of death, as it does generally with COVID-19; and that the risk of death from COVID-19 for people with RAIRDs increased from the age of 35, rather than 55 as it does among the general public.

The research does not tell us whether the extra risk of people with RAIRDs dying was due to them being more likely to become severely ill due to COVID-19 infection, or whether it was down to something else, like the disruption to care for their long-term rare autoimmune rheumatic disease.

Either way, this research shows that improving care for people with these conditions must be prioritised in the long-term. We showed in 2018 that there were long waits for diagnosis, inconsistent access to specialist care, and clear issues with coordination of care for too many people. These issues have been compounded, not created, by COVID-19.

NHS England’s current guidance says services should prioritise seeing people with RAIRDs, even if services come under pressure from COVID-19. This study supports this prioritisation, but coupled with RAIRDA’s findings, shows the need to build services back better to fix the long-term issues with care.

Importantly, clinicians and patients have highlighted to us the ways that disruption to care by COVID-19 stores up problems for the future. Delays to treatment, diagnosis, and medication monitoring could all have long-terms implications for patients, including potential organ damage. Whilst these less immediate impacts were not the focus of this study, they should not be forgotten.

Other important findings of this research include the fact that, ‘COVID-age’ a tool used by workplaces to assess someone’s vulnerability to COVID-19, would “underestimate the risks particularly to young and/or female people with RAIRDs”. Another planned COVID-19 risk prediction model commissioned by Office of the Chief Medical Officer for England to help GPs and clinicians give patients better advice about their risk from COVID-19 would also underestimate risk to people with RAIRDs. This is because the risk for people with RAIRDs is higher than people with other chronic conditions which these conditions have been grouped with.

This is the first research we are aware of that collects national-level data on rare autoimmune rheumatic diseases. One of the major issues with these rare diseases is that UK health services do not collect and compile data which can be used for this kind of research. The authors have done the RAIRD community an important service by showing how routinely collected Hospital Episode Data (information which is noted whenever someone visits hospital, importantly noting the condition they were admitted with) can be used to understand how people with RAIRDs are being impacted by the pandemic.

Whilst individually the 17 diseases covered by this research may be rare, the study shows that just under 170,000 people have been diagnosed with one in England since 2003 and were still alive as of the 1st March 2020. So, the first message to take away from this research is that lots of people live with RAIRDs. Given the similarities between different RAIRDs, improving the way we diagnose, treat, and care for people with these conditions across the UK will help thousands of people.

Whilst the study covered just England, with COVID-19 impacting each of the four nations in the UK in a similar way, we believe this study has similar implications for Wales, Scotland and Northern Ireland.

What comes next?

Before this research was published, we knew just how difficult the past 9 months have been for people with RAIRDs. This was clear from our ‘Chronic Crisis’ survey and what patients told RAIRDA’s member charities on helplines and online forums. We also know that this research will not make comfortable reading for patients who have already faced months and months of difficult news, and may have experienced first-hand the challenges of shielding, or difficulties accessing care. However, this research is an important step towards making health services and decision-makers give RAIRDs the attention and resources they need.

The research authors now plan to look at to look at death certificate data to determine the cause of deaths and the impact of shielding. This could help health services and clinicians make decisions in the future to better protect patients. The authors also note there is a need to examine the effect of ethnicity, immunosuppression and steroid usage on risks for people with RAIRD.

In the coming months we will be campaigning for the government and health service to make RAIRDs a priority as the health service recovers, and make sure they get the same quality of care which is expected for other life-altering and life-threatening conditions. This is something we will need the support of patients to do, and we hope to share details of how you can support this in the coming months.

The good news is that the last few months have shown how quickly the health services can transform and make progress, whether with changes to processes like introducing remote appointments en masse or rapid advances in treatment, and now vaccinations, for COVID-19. We believe we can make sure future changes and transformations benefit people with RAIRDs. There is some excellent care for RAIRDs in the UK, this too shows that many of the long-term issues which many people with RAIRDs have faced are not inevitable and can be overcome.

Read more on the study from the British Society for Rheumatology here.

The Registration of Complex Rare Diseases Exemplars in Rheumatology (RECORDER) project is a collaboration between the University of Nottingham, and the National Congenital Anomaly and Rare Disease Registration Service (NCARDRS) within Public Health England. Read the full study here.

Dr Peter Lanyon, one of research’s authors is a Co-Chair of RAIRDA. The research received funding from RAIRDA member Vasculitis UK.

COVID-19 has had a huge impact on people with rare autoimmune rheumatic diseases. Over the next few weeks, we’ll be featuring the stories of people with RAIRDs on our website, showing the dramatic impact the pandemic has had on different areas of people’s lives.

Sarah lives in Hampshire and has been diagnosed with a form of vasculitis. For Sarah, her autoimmune condition caused strokes as well as permanent organ and nerve damage. The immunosuppressant medication she takes to control her vasculitis, combined with issues with her respiratory system from the disease, mean she is ‘extremely clinically vulnerable’ to COVID-19. Before the second lockdown began, and the government formally recognised the need to allow people who were extremely clinically vulnerable to be furloughed, Sarah was forced to leave her job due to her concerns about the virus

“I had a role tutoring English in a secondary school,” Sarah says. “It involved a lot of moving around in busy corridors and teaching pupils from different classes or bubbles.”

“When I went to my doctor with my concerns all they could say to me was: ‘I don’t think this is the right job for you right now.’ Whilst the school tried to do everything they could and were supportive, after a few weeks back at work in September it was just clear that there was still a risk. With cases on the rise, and with a few cases in the school, I made the decision to leave my job.”

“I’m lucky that I’ve got a bit of savings to live on for a short time. However, I’m worried about whether I’ll be able to claim any other financial support like universal credit due to the fact I technically chose to leave my job.”

“Everything people who are at higher risk from COVID-19 have heard since March has told them to take this virus extremely seriously. For example, my GP was told to ask me whether I would like to be resuscitated if I got COVID-19 and became seriously ill. I’m 38 and to be discussing end of life care like that was really shocking. The fact people like me who’ve had to have that kind of conversation were being told they need to go into work, when cases were rising so dramatically, or lose their income was really shocking.”

Whilst the furlough scheme is now available to people who are clinically extremely vulnerable and cannot work from home, in order to access it employees need to have been in work on October 30^th meaning that, Sarah, and anyone like her who was forced to leave work before this date will not be able to receive furlough payments.

Additionally, if someone is clinically extremely vulnerable and in work, employers have the choice to place someone on SSP (statutory sick pay) instead of furloughing them. The level of financial support available under SSP is much lower than under the furlough scheme.

During the first lockdown, a small but significant number of people with RAIRDs who were ‘extremely clinically vulnerable’ were placed on SSP rather than being furloughed (See the ‘Employment and Income’ section of our Chronic Crisis report for more details). RAIRDA is concerned if employers could continue to choose to be people on SSP rather than furlough them. The low level of SSP payments will mean that this is, at best, unfair on those who are vulnerable to COVID-19 and could, at worst, force people to choose between their health and their livelihoods.

If you would like to have your own experiences featured in future posts on our website please email rairdauk@gmail.com.

On 1st October, the House of Commons Health and Social Care Committee published its report into NHS core services during the pandemic. The report looks at how normal NHS services have been impacted by the need to care for COVID-19 patients and prevent the spread of the virus in healthcare settings. We submitted evidence to the committee based on what over 1,300 people with RAIRDs told us in a survey about their experiences of pandemic. 

RAIRDA was cited by the committee as one of the many organisations which gave evidence indicating how unclear and confusing shielding guidance and advice had been in the initial wave of the pandemic.

The committee’s report also notes the need for clear communications between medical teams and patients about how people’s care has been changed and disrupted due to the pandemic. Simon Stevens, the head of the NHS in England told the committee in August that they have instructed that: “[NHS] trusts working with GP practices should ensure that between them every patient whose planned care has been disrupted by COVID receives clear communication about how they will be looked after, and who to contact in the event that their clinical circumstances change.” This is important for people with RAIRDs, whose conditions can flare and progress without warnings, and who may require support from hospital-based specialists rather than just their GP.

We would have liked to have seen more mention of chronic or long-term conditions in the report. Whilst these are often not seen as an emergency, the reality is that delays between appointments and late diagnosis can have serious consequences for patients with chronic conditions. Treatment options may not ‘cure’ chronic conditions like vasculitis, lupus, sjogren’s and scleroderma but we know early treatment can help patients live better lives and prevent serious complications. 

There are four main areas relevant to people with RAIRDs where the committee asks the health service to take action:

First, the committee has asked NHS England to report back on what steps it is taking to deal with the backlogs caused by the pandemic and measure these. Moving forward, we will make clear that disruptions to the care of people with chronic conditions, like RAIRDs, need to be captured by any assessments of how NHS services have been disrupted by the pandemic. Relying on more common metrics, like waiting times for cancer treatment or the number of people waiting for elective surgery, risks missing the many people who have had necessary monitoring appointments cancelled or that people who needed help have struggled to access it. When we surveyed them in late April and early May, 1 in 3 of the people with RAIRDs who said their care had changed or been disrupted said it had already affected their ability to manage their conditions. 

Second, we look forward to seeing the health service’s assessment of how telemedicine can be used and has been used well. We know it can be very beneficial, helping patients avoid long journey’s to specialists, but we also know that it cannot replace physical appointments when tests or procedures which can only be performed in hospital are needed.

Noting the actions taken already, the committee asked the NHS to review how patients are communicated with about both their care and their level of risk during any future spikes and ensure that patients are treated with “dignity and compassion”. We welcome this, as a number of patients felt they had been “abandoned” during the pandemic. 

Finally, the committee asked for clarity on when weekly testing for NHS staff will be implemented. Regular testing for NHS staff will give vulnerable patients reassurance about accessing services, as well as preventing the spread of the virus in general.

Overall, this is a very important report for the NHS in England as we go into the winter. We hope the devolved nations will undertake similar actions. We will continue to work to make sure the needs of people with RAIRDs are addressed in work like this.

We also submitted evidence to the Welsh Senedd’s Health, Social Care, and Sport Committee’s inquiry on COVID-19. Whilst this covered the impact of COVID-19 on core health services, it also covered issues like PPE and contact tracing and so cover these issues in less depth than this inquiry on services in England.

What we’re doing now

RAIRDA will soon be holding a roundtable with patients and clinicians to look at how we can alleviate the problems identified in our recent report and those that patients continue to raise with us. We hope this discussion will provide the basis of a policy paper with useful recommendations for the health service going forward. The health service is likely to go through a period of redesign over the coming months and years and we will be feeding in wherever possible to make sure this supports people with RAIRDs. We hope to have more news in the future about how people with RAIRDs can get involved in, and support, our work.

Continuing care

As COVID-19 cases, hospitalisations, and sadly deaths, begin to rise we know that many people with rare autoimmune rheumatic diseases (RAIRDs), such as lupus, scleroderma, Sjögren’s syndrome and vasculitis will be concerned about the continuing care for their condition.

The consequences of disruption of care for these conditions can be serious and much of the care patients need cannot be done remotely. For example, for some people, physical monitoring tests are the only way to detect organ damage and potential disease progression.

Despite new connective tissue and vasculitis patients being regarded as a priority in NHS guidelines, the first wave of COVID-19 saw widespread disruption to peoples’ care as many clinicians were deployed to treat those seriously ill with COVID-19. 80% of people with RAIRDs had already experienced a change or disruption to their care by mid-May 2020 and 1 in 3 of these people already felt it had impacted their ability to manage their condition. Some told us they had appointments moved back by over a year, were still waiting for test results or to start treatment, or that they were reluctant to ask for help to manage a flare. When asked to comment in their own words about the issues that mattered to them, it was deeply alarming that many said they felt “abandoned”. Over summer we have continued to hear from people who are struggling to access the support they need.

The line between essential and non-essential care and support is also hard to draw with these conditions – damage can be asymptomatic before it becomes irreversible and if escalating flares are not dealt with early, people can become critically ill.

So far, we understand that clinicians and health service leaders are determined that services will not be disrupted during any future rise in cases to the extent they were during the spring, nor do they want patients to be discouraged from seeking help due to their concerns about COVID-19. In some areas, there are plans to keep some hospitals COVID-free whilst in others, rigid infection control will prevent transmission in hospitals.

We welcome this and hope the health service will be supported to achieve this continuity of care in the coming months. Clear communication with patients about when and how they should seek help, ensuring COVID-19 hospitalisations remain low, and giving clinicians the support they need to run services effectively will all be crucial.

Shielding

We understand there is a recognition in government and the health sector that shielding was an extremely difficult process and there is no sign of a return of nation-wide advice to shield yet.

If cases continue to rise, it is important that there is support for those people who are at high risk and wish to shield, such as access to the job retention scheme for those who cannot work from home and clear directives for employers. It is also important that patients have as complete an understanding of their risk as possible so they can take the steps they feel are appropriate to protect themselves.

Data from Public Health England on where cases are concentrated may also help patients make judgements about what activities they feel comfortable undertaking at the current time.