RAIRDA’s work

Chronic Crisis: The Impact of COVID-19 on people with rare autoimmune rheumatic diseases

What is most concerning about the comments in this survey was the number of people who said they felt ‘abandoned’ by the health service and the rest of society in general. This came across in comments about people seeking guidance and information on their level of risk, seeking to raise issues such as a worsening of symptoms from their RAIRD and trying to understand how their care has been impacted by COVID-19.

This pandemic has caused severe disruption for people with these chronic conditions. But the crisis is also “chronic”, in the sense that many of these issues with care or support have their roots in problems which were present long before this crisis. If we do not get our response to these issues right, the consequences will be long-lasting.

Sue Farrington, Co-Chair, RAIRDA, Chief Executive, Scleroderma and Raynaud’s UK

From April 27th to May 15th 2020 we conducted an online survey of people with RAIRDs. We received over 1,300 responses from across the UK. This report is based on these survey responses and covers a range of issues which have affected people with RAIRDs during the COVID-19 pandemic from healthcare to employment and financial issues.

Key findings

  • 54% of respondents to the survey were currently shielding.
  • 80% of people with these conditions had experienced a change in their care.
  • 37% of these people said that their ability to manage their condition had been affected as a result. Virtual or telephone appointments can be helpful, but on their own they are insufficient to give all these patients the care they need.
  • 33% of people with RAIRDs say the pandemic has adversely impacted their household finances compared to 23% of the general public.
  • 34% of people with RAIRDs said that advice from the health service or the government was “unclear and contradictory”.
  • Some people raised concerns about accessing healthcare due to not wanting to add to the burden on the NHS or fears of infection with COVID-19. However, many more commented that they felt ‘abandoned’ due to a lack of clear information about their level of risk or the way their treatment plan had been changed.

When COVID-19 does recede as a public health concern, these conditions will still be with us. The testimony of people with RAIRDs in this report shows the need to improve the way these people are cared for and communicated.

Front Cover

Reduce, Improve, Empower report

“This powerful report demonstrates for the first time the similar needs and experiences of people living with rare autoimmune diseases. It speaks very clearly of the shared needs to reduce diagnostic delay in all stages of the pathway, to improve care coordination across specialities, and of the pivotal importance of empowering clinicians and patients with greater knowledge.

Whilst our unique alliance between professional society and patient charities in this disease area has an important role in identifying and supporting solutions, their implementation will require concerted action across the community. We therefore need your support, whether you are a clinician, commissioner, policy maker or patient.

Thank you for reading this report, which we hope will catalyse further progress to improve the lives of people living with rare autoimmune rheumatic diseases.”

Dr Peter Lanyon, Chair, Rare Auto-immune Rheumatic Disease Alliance

In 2013, the UK Strategy for Rare Diseases was published, which for the first time since the establishment of the NHS, provided direction for the healthcare needs of people living with rare diseases. The strategy was well received and signed by the health ministers of each country in the UK, with cross-party support; it contains 51 distinct commitments that are designed to improve health and social care for rare diseases.

There is however, a concern that the focus of the strategy and implementation to date has been on rare genetic conditions, with a worrying lack of focus on the 700,000 or so people living with non-genetic rare diseases. Four years on from the publication of the strategy, this lack of focus on rare autoimmune diseases means that there is a risk that the needs of people living with these conditions are being left behind.

To explore this further, in 2016, we conducted a survey of their patient members, designed to assess their experience of specific aspects of care highlighted by the UK Strategy for Rare Diseases.

The survey was sent to people across the UK who are living with a rare autoimmune rheumatic disease. It was distributed via social media, e-newsletters and forums, had 47 questions and received more than 2,300 responses from across all four nations. We published a report based on our analyse.

Key findings:

  • 55% of respondents reported feeling either not very or not at all confident in their GP’s knowledge of their condition
  • 61% of respondent’s state that they are struggling to cope with their condition