Abstract Background/Aims Supporting people with health conditions to remain in work is a UK government priority. We aimed to understand what resources are available from national charities for people with rheumatic and musculoskeletal conditions (RMDs), where people look for information about their condition, how helpful they find information, and identify areas for improvement. Methods National RMD charities were identified, and individual charity websites searched for information on work, and the frequency and extent to which these included key topics. Ten patient contributors provided feedback on the usefulness of topics covered and any gaps. Questions on type and experiences of information accessed were included in a UK cross-sectional web-based survey of people who reported a RMD diagnosis. The survey was co-designed with patient partners and disseminated to charities and social media channels between 30/8/21-26/11/21. Results 18 national RMD charities were identified, and available work information summarised (Table 1). There was significant variation in work information provided, with limited internal signposting between charities to those with more comprehensive resources. External signposting to NHS and government resources was variable and differences in work policy across devolved nations often not acknowledged. 859 people completed the survey. Charity websites, clinical services and friends/family were common sources of information. Compared to people with inflammatory RMDs, those with non-inflammatory RMDs were more likely to be employed/not working because of illness (76.9% v. 64%) and more likely to report difficultly accessing information about their condition (63.8% v. 36.4%). Our patient partners found navigating work information challenging. Improvements suggested included using simpler language and signposting to ‘bona fide’ information. Patients wanted positive patient stories, help with ‘soft skills’ e.g., how to have constructive conversations with their employer, and better employer training. Conclusion Charities have a key role in providing information but could improve signposting between charity websites and to external resources, including positive patient vignettes, and clearer language. People with non-inflammatory conditions feel their information needs are not being met. This provides important guidance to inform development of resources to support people with RMDs to work. Disclosure N. Mishra: None. G. Macfarlane: None. E. Wainwright: None. C. Jenkins: None. M. McAllister: None. K. Walker-Bone: None. R. Hollick: None.
Read full abstract