Implementing Disease Modifying Therapies in Neurodegenerative Diseases: Lessons From a Survey of Multiple Sclerosis Specialist Services Across England

Background Since 2010, NHS multiple sclerosis (MS) services have transformed to deliver disease modifying therapies (DMTs). To inform future service developments, including intended policy shifts towards care closer to home, we surveyed staff working with different service models across England about their experiences of care delivery. Methods We co-designed a survey with clinicians, academics and people with lived experience of MS, to capture structures and processes in four diverse service models; and explore what service innovations staff are most proud of, and what they perceive as the main current challenges. Results We surveyed 12 healthcare professionals, developing four case studies. Service A was the most well-resourced team (24.1 Full Time Equivalent (FTE) staff/ 2800 patient caseload) and the only service that had reviewed most clients within a year. The MS team travel to satellite units to see patients. In Service B (7.2 FTE/ 2100 patients), patients travel from district general hospitals (DGH) to the specialist centre. In Service C (5.3 FTE/ 950 patients), the MS team were located within the DGH and networked to a neuroscience centre. In Service D (5.4 FTE/ 305 patients – but with 700 further patients supported) there was bi-directional flow between a neuroscience centre and DGH; with most clients living outside the commissioned area and many in joint care arrangements. Across all services, respondents were proud to deliver guideline-based care; MS nurses provided a point of contact and were responsible for safety monitoring; all provided patient-initiated services and MDT discussions (with neuroradiology) around all switching/ escalating DMT decisions. Key challenges were identified around workforce (recruitment and retention), and rising caseloads; concerns around care inequities due to limited home treatment availability for DMTs; and limited support for functional neurology, vocational rehabilitation and specialist psychology, dietetics and community provision. Conclusion Respondents consistently highlighted gaps in provision of functional neurology services, specialist psychological therapies, dietetics and community support; and vocational rehabilitation services. To align with 10-year health plan, there is a need for workforce capacity and training development to support far greater access to MS care and treatment pathways close to home, including for those with multiple long-term conditions.