The Experiences of Healthcare and Outpatient Neurology Appointments for People with Multiple Sclerosis

Systematic Review Abstract Background: Multiple Sclerosis (MS) is a complex neurodegenerative condition. People with MS (pwMS) frequently encounter healthcare professionals (HCPs) and healthcare services. Understanding the healthcare experiences of pwMS is essential, as often, their needs are unmet. This can impact the management of disease, long-term health outcomes, and future healthcare access. Objectives: This qualitative systematic review aimed to understand pwMS’ healthcare experiences across an international context. Method: A systematic search of Embase, MEDLINE, and CINAHL was conducted, followed by a forward citation search. Twenty-five papers met the full-text screening criteria. The papers were summarised and critically evaluated, and a thematic synthesis was conducted. Results: Six main themes were generated; pwMS felt there was a lack of person centred information from HCPs, holistic care options, and attention to inclusion and diversity. PwMS felt dismissed and abandoned by HCPs and experienced a range of difficult emotions both due to their MS and healthcare experiences. PwMS highly valued peer support. Conclusions: The findings from the review indicate that pwMS would like increased person-centred information about their MS, attention to inclusion and diversity, and a comprehensive range of care options. The findings highlight the emotional impact of living with MS, the healthcare experience, and the importance of peer support. Based on these findings, clinical implications for HCPs and clinical psychologists are suggested. Empirical Paper Abstract Objective: I aimed to explore people with Multiple Sclerosis’s (pwMS) narrative experiences of outpatient neurology appointments, particularly concerning their relationships with their neurologists. Design: I interviewed twelve participants with Multiple Sclerosis (MS). Participants' interviews were analysed using narrative analysis. I identified story summaries, subject positions, turning points. I used positioning theory to consider the patient doctor relationship. Results: Three main narrative types were identified: processing, frustration, and acceptance. The analysis identified participants’ differing positions as both a person with MS and their peers with MS. Within their narratives participants positioned their neurologists as either ‘heroes’ or ‘villains’. Analysis of turning points highlighted that for participants, the COVID-19 pandemic and having something they could practically do for their MS changed how participants spoke about their MS and their neurology appointments. Conclusion: The findings indicated the different experiences of pwMS in outpatient neurology appointments and how their needs change across the care pathway. The findings also tell us about the importance of the patient-doctor relationship and the impact this relationship can have on a person’s experience of MS. Practical suggestions are made for clinical psychologists working with neurologists in multi disciplinary teams (MDTs).