068 Survey of the NHS care experience of people living with rare autoimmune rheumatic diseases

Abstract

Background: The UK Strategy for Rare Diseases (DH, 2013) makes commitments to empower those affected by rare diseases, promote earlier diagnosis/intervention, and improve care coordination. The Rare Autoimmune Rheumatic Disease Alliance (RAIRDA) comprising LUPUS UK, Scleroderma & Raynaud’s UK, Vasculitis UK and British Society for Rheumatology) was created in response, to raise the profile of the needs of people with rare autoimmune diseases, and aid their access to timely effective treatment. Methods: RAIRDA conducted a survey of their patient members designed to assess their experience of aspects of care highlighted by the UK Strategy for Rare Diseases. After piloting, it was promoted via social media, e-newsletters and forums amongst RAIRDA members during three months in 2017. Results: 2,389 responses were received, 160 were excluded due to unclear diagnosis; and 2,224 responses were analysed comprising people with lupus (1098), vasculitis (527), scleroderma (476) and Raynaud’s (128). 80% resided in England, 20% in devolved nations. Participant’s demographics were representative of these cohorts, including differences between conditions. Two thirds were aged >45 years. Overall 90% were female, with more males amongst people with vasculitis (22%), and more non-white respondents in SLE (9%). 33% were diagnosed within last three years and 31% >10 years ago. Overall 44% reported first symptoms to diagnosis of >three years; this was higher in lupus (56%) and lower in vasculitis (24%). This delay was identical (42%) amongst those diagnosed in last three years. Overall, 31% reported waiting >three months from referral to specialist appointment; this was 41% amongst those diagnosed in last three years. 65% reported attending at least one hospital, with 31% attending three or more sites. Only 35% had specialist-nurse supported care; of these, 43% indicated this was easy to access. 93% reported attending >one specialist clinic. Of these, only 17% attended joint clinics; rising to 20% amongst attendees at respiratory and rheumatology clinics. 50% considered they had adequate support from secondary care. The internet (63%), consultants (56%) and online discussion groups (46%) were reported to be the most useful information sources, rather than nurses (21%). 60% were struggling to cope with their disease, with 51% feeling lonely and isolated at least once a week. 43% reported that they or partner had had to change work hours because of their illness. Conclusion: This highlights the commonality of shared unmet need, and impact, amongst people living with rare autoimmune diseases. In particular, diagnostic delay does not appear to have improved amongst those diagnosed more recently. There are significant opportunities to improve care coordination, information and support for people living with these conditions, and an important role for rheumatologists to lead this by improving services for rare diseases to support the ambitions of the UK Strategy.