A service evaluation of rehabilitation medicine interventions for people with multiple sclerosis

Summary

Over 270 people with multiple sclerosis (PwMS) are under active follow up by the Rehabilitation Medicine (RM) department in Derby at University Hospitals of Derby and Burton NHS Foundation Trust. They are seen as part of “general rehabilitation” clinics in the outpatient department, and sometimes on home visits by our multiple sclerosis specialist nurse (MSSN) or team of doctors. We have not previously reviewed the characteristics of the MS population under RM review in Derby.

We felt that it was important and timely (particularly in view of recent developments regarding disease modifying therapies for people with progressive MS) to conduct a review of our patient population in terms of their demographics, diagnoses and contact with the RM and, where relevant, neurology departments. We also wanted to check whether there were patients under RM but not neurology follow-up who might potentially be eligible for DMT but who would need rereferring to neurology to access this.

Available clinic letters on the hospital computer system (iCM) were reviewed to provide details of patient diagnosis and disability. Appointments records were reviewed for details of appointments or follow ups by local RM and neurology services. Clinical information was compared to relevant criteria for DMTs (ocrelizumab for PPMS and Siponimod for SPMS).

78% of PwMS had been reviewed by RM in the past 12 months, as a further 19% within the past 24 months. The majority of reviews (42%) had been carried out by the MSSN. 27% of PwMS had been reviewed by the neurology department in Derby within the last 24 months.

1 patient with PPMS and 8 patients with SPMS who are not currently under neurology follow-up have been identified as being potentially eligible for DMTs (albeit without up to date neuroimaging).

We are liaising with local neurology services about the next steps for assessment of these patients. We also recognised that we were not encouraging feedback from patients regarding service provision. A questionnaire was posted to all patients asking about their experiences and opinions of RM input into their MS care.

65 responses were received, mostly from patients with progressive MS and nearly all with significant mobility restrictions. Respondents were less likely to think that they had been reviewed by RM and more likely to think that they had been reviewed by neurology in the past 2 years than the computer system showed. Respondents were keen for input by more members of the multidisciplinary team (MDT), including having MDT clinics, and were also keen on having review by both neurology and RM.

Respondents placed emphasis on symptom management as being important to them, and something they felt should be addressed in RM clinics. Areas that are viewed by RM physicians as being important, including activity, participation and self-management, were less prioritised by respondents.

Respondents reported frequently struggling to get in touch with the RM department, and not having a Single Point of Contact (SPOC) for their MS management, as recommended by NICE. Of the 28 respondents who reported not having a SPOC, 25 (89%) would like to have a SPOC.

Respondents made suggestions about how the RM service could be improved, including methods of contact, ways of organising clinics and ease of access.

This service evaluation has provided useful information about our MS population and service delivery. A number of areas are already under discussion within the clinical and management teams (clinic documentation, clarifying routes of contact for patients, MDT clinics, need for cover for MSSN during absences), waiting for discussion (establishing closer links with neurology, establishing and keeping updated a database) and some larger pieces of work are being planned (personalised patient information booklets; exploring perceptions of RM by patients and clinicians; reviewing the language and scales used to describe people with progressive MS).