Almost one-third of UK rare rheumatic patients face a five-year wait for diagnosis

Today, a new report reveals that some individuals with rare autoimmune rheumatic diseases (RAIRDs) in the UK encounter major barriers in accessing care and treatment. Nearly one-third waited over five years for a diagnosis, with the average wait time being two and a half years.

Rare autoimmune rheumatic diseases are a group of conditions, including Lupus, Sjögren’s, Vasculitis, Scleroderma and Raynaud’s, where the body’s immune system becomes overactive and attacks healthy tissues, often in multiple organs throughout the body simultaneously. These conditions are often life-limiting and can be fatal. And yet, alarmingly, even after diagnosis many patients face poor care coordination and difficulties accessing information and support. These challenges can lead to a significantly poorer quality of life with nearly all (95%) respondents stating their condition has a negative impact on their lives.

Key findings from Rare Care Matters: the struggle to access diagnosis and care for rare autoimmune rheumatic disease patients by Ipsos and the Rare Autoimmune Rheumatic Disease Alliance (RAIRDA) also include:

• 86% of those who waited more than five years for a diagnosis reported a negative impact on their ability to do day-to-day tasks
• Nearly three quarters (73%) said their condition negatively affects their psychological health
• Two-thirds (66%) of working individuals with RAIRDs stated that their condition impacts their ability to perform their jobs effectively.[

RAIRDA is the first dedicated body bringing together patients and clinicians to advocate for better care and treatment for people living with RAIRDs. The report is the result of a survey of over 1,300 people living with RAIRDs across the UK and aims to seek support from the Government to reduce inequalities for people living with rare disease. 

This report presents the findings from a survey of 1,352 people living with Rare Autoimmune Rheumatic Diseases (RAIRDs) across the UK, conducted by Ipsos in 2024 on behalf of the Rare Autoimmune Rheumatic Disease Alliance (RAIRDA). An online survey was conducted between 22nd April and 31st May 2024 of individuals aged 16 and over living with rare autoimmune rheumatic disease(s).

There are stark variations in the experiences of care and treatment which respondents reported. Some patients have been fortunate, with a third (34%) diagnosed within a year of symptom onset and over half (56%) reporting that the different healthcare professionals caring for them worked well together. However, a third (34%) felt that their healthcare professionals did not work well together. Just over a quarter (26%) felt that they had confidence in their GP’s understanding of their condition, and only 16% felt that they had sufficient access to information and support.

RAIRDA’s report lists a set of policy recommendations from RAIRDA, which include the creation of measurable, realistic targets for referrals to specialists and commencement of treatment for RAIRDs to be included in each nation’s health and care guidance body and implemented by the NHS. It outlines the need of every person living with a RAIRD to have a named person responsible for coordinating their care. In addition, it urges the Government to provide increased funding and support for research into the diagnostic pathway for RAIRDs.

Sue Farrington, Co-Chair of The Rare Autoimmune Rheumatic Disease Alliance (RAIRDA), said: “As this report shows, across the UK, people with RAIRDs are not getting the care they need. The evidence echoes the stories we hear every day from our patient communities – the UK’s health system is not working for people living with RAIRDs, and they are falling through the cracks.

These findings are perhaps not unsurprising, in a system where there has been an increasing focus on major and common conditions. The UK Rare Diseases Framework and subsequent action plans have enabled a significant step for rare conditions, but more is needed. It is imperative that the new Government does not lose sight of people living with RAIRDs, especially given the recent changes in the English health and social care system, including the abolition of NHS England. People living with RAIRDs should not be left feeling “totally alone with [their] disease,” as one respondent told us.”

Dr Bridget Griffiths, RAIRDA Co-Chair, said: “Whilst there are examples of excellent care and treatment across the UK, the situation for people with RAIRDs can be improved. We are calling on decision-makers and politicians to use the insights in this report to drive improvements in provision, such as the expansion of specialised networks to share knowledge and improve access to expert care and treatment, and the creation and implementation of the first ever quality standard for rare disease. Access to vital care and treatment should not be determined by the prevalence of your condition. The time for change is now.”

Rosie McQueen, who is 73, lives in South Wales and has Sjögren’s disease, said: "Sjögren’s is a systemic disease with a highly significant impact on many of us. Because it can, and often does, have an effect on several different bodily systems, we are frequently juggling medical appointments with different specialists, while trying to ensure they are coordinated with each other. It is very hard work being your own medical coordinator. This hard work comes on top of trying to balance normal living requirements with debilitating chronic fatigue and the brain fog that too often comes with it.

It is a condition that requires constant re-evaluation and mental agility, and is ever-changing, involving an ongoing grieving process as each loss hits home. The findings of this report reflect how important it is that care and support for people living with rare autoimmune rheumatic conditions is improved, to ensure we are given informed care and appropriate reassurance, which reflects the reality of these conditions."

Peter Dowd MP, Chair of the APPG on Rare Diseases said: "This report highlights the challenges faced by the 170,000 people living with rare autoimmune rheumatic diseases (RAIRDs) in the UK and the need for continued improvement in our healthcare system. The UK Rare Diseases Framework is an important step forward, and we must build on this progress to ensure that no one with RAIRDs is left behind. By strengthening support and care pathways, we can create a system that works for everyone."

For access to the full report, please visit: https://rairda.org/publication/report2025/