Half of Britons with Rare Rheumatic Disease Need Three Years for Diagnosis, Report Says

It takes more than three years for half of Britons with rheumatic diseases like scleroderma, lupus and vasculitis to obtain a correct diagnosis, according to a Rare Autoimmune Rheumatic Diseases Alliance report.

This means a major delay in obtaining the treatment they need, according to the report, titled “Reduce, Improve, Empower.” It included observations from more than 2,000 patients.

Two out of three people living with one of the three diseases had to go to several hospitals to receive the treatment they needed, and most felt their care was not well-managed, according to the report.

Having one of the conditions takes a significant toll on patients’ social life and savings, it said. One in five patients missed at least three months’ work in the past year, and a similar number quit working entirely.

“This report demonstrates for the first time the similar needs and experiences of people living with rare autoimmune rheumatic diseases,” Peter Lanyon, the chair of the alliance, said in a news release.

“This can have an overwhelming effect on the quality and length of life,” he said. “Early treatment for all these conditions is essential, and so the potential delays reported here of three years or more to get a diagnosis are concerning.”

“These findings are a stark reminder of the challenges that people living with these conditions face — from getting a diagnosis, to accessing treatment and to coping with the impacts on home, work and family life,” he added.

Lanyon proposed a three-part solution to tackle these problems: reducing the time for diagnosis, improving coordination among healthcare providers, and increasing the public’s awareness and knowledge of rare diseases.

“More than 90% of respondents [to the survey used for the report] told us that they had received care from multiple” specialists, “but less than one in five did so” at a clinic that covered several rare autoimmune conditions, said Sue Farrington, chief executive of Scleroderma and Raynaud’s UK. “Many people reported needing to visit two, three, four — or more — different hospitals, which is likely to have an effect on how well care is coordinated.

“This report sheds light on the challenges faced by people with rare, non-genetic conditions,” she said. The alliance “is committed to working with all stakeholders to achieve these aims, to improve the lives of people living with rare autoimmune rheumatic diseases.”

Sixty percent of the respondents said they are struggling to cope with their condition.

“This report is the first of its kind and highlights the value of the RAIRDA [alliance] partnership, which brings clinicians [doctors] and patients together to improve the quality of care for these rare conditions,” said Ali Rivett, the CEO of the British Society for Rheumatology. “We now call on the government, the NHS [National Health System] and other health bodies to work with us to implement the recommendations and help improve the situation for all people living with these conditions.”