What do users want from rheumatology telephone advice lines? A cross-sectional survey with the National Rheumatoid Arthritis Society.

Objectives: Telephone advice lines are a key component of National Health Service (NHS) rheumatology services and increased demand poses challenges for users and service providers. To explore the experiences of people using these services we undertook an evaluation survey with the National Rheumatoid Arthritis Society (NRAS).

Methods: An online survey, co-designed with people with lived experience, was distributed by NRAS between August and September 2024. The survey collected data on respondent demographics, reasons for contacting advice line services, experiences using the advice line and how services could be improved.

Results: A total of 1423 participants completed the survey. The majority were female [n = 1338 (94%)], of White British ethnicity [n = 1455 (95%)], had rheumatoid arthritis [n = 1288 (91%)], with a disease duration of >6 years [n = 975 (68%)] and were 61-80 years of age [n = 849 (56%)]. Most services were automated [n = 1273 (85%)], although participants would prefer to speak to someone directly [n = 889 (59%)]. The main reasons for contacting advice lines were experiencing a flare [n = 946 (66%)], pain [n = 876 (61%)] and medication concerns [n = 863 (61%)]. Most participants found the advice to be 'helpful to very helpful' [n = 847 (59%)] and were 'confident to very confident' [n = 866 (61%)] they could implement the advice given. A total of 839 (56%) calls were returned within 48 hours. There were 665 free-text responses on how telephone advice line services could be improved that focused on three main areas: increasing availability, improving response times and having more staff to deliver advice line support.

Conclusion: The increasing demand for NHS rheumatology telephone advice line services requires a redesign of current systems to maximize accessibility and manage user expectations.