The research was based on a survey of 2,000 patients’ shared experiences, so the three-year delayed affected about half. The Rare Autoimmune Rheumatic Diseases Alliance (RAIRDA) published the study, “Reduce, Improve, Empower,” on Feb. 28 to coincide with Rare Disease Day 2018.
Although the U.K. Rare Disease Strategy was published in 2013, it focused largely on genetic diseases. This left people with rare autoimmune conditions still in need of answers.
The study showed that 61% of respondents were struggling to cope with their condition and that 55% felt either not very or not at all confident in their general practitioner’s knowledge of their disease.
About two-thirds of patients needed to visit multiple hospitals to get the required treatment and care, the report showed. A majority were not convinced that their care was correctly coordinated.
Another finding was that the conditions impacted patients’ professional life. About one in five missed over three months of work in the previous year, and a similar proportion reported having to stop working entirely.
“This report demonstrates for the first time the similar needs and experiences of people living with rare autoimmune rheumatic diseases,” Peter Lanyon, chair of RAIRDA, said in a press release.
RAIRDA is a forum to bring together doctor and patient organizations to improve care for people with rare autoimmune rheumatic diseases.
“Lupus, scleroderma and vasculitis are incurable conditions where the body’s own immune system attacks and damages healthy tissue and organs. This can have an overwhelming effect on the quality and length of life,” Lanyon added.
“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,” he said.
In addition to the delays in getting a diagnosis, Lanyon said the report’s results are a reminder of other challenges patients face, including access to treatment and coping with the disease’s impact on their quality of life.
“We have set out a series of  potential solutions [to the problems mentioned in the survey] linked to three important aims — to reduce delays in diagnosis, to improve the coordination of care, and to empower people with greater knowledge,” he said.
“More than 90% of respondents told us that they had received care from multiple different specialisms — but less than one in five did so at a joint clinic. 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,” said Sue Farrington, the chief executive of Scleroderma and Raynaud’s UK (SRUK).
“This report is the first of its kind, and highlights the value of the RAIRDA partnership,” said Ali Rivett, CEO of the British Society for Rheumatology. RAIRDA is calling “on the government [the National Health Service] and other health bodies to work with us to implement the recommendations and help improve the situation for all people living with these conditions,” Rivett added.
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