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

Implementing Disease Modifying Therapies in Neurodegenerative Diseases: Lessons From a Survey of Multiple Sclerosis Specialist Services Across England | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article Implementing Disease Modifying Therapies in Neurodegenerative Diseases: Lessons From a Survey of Multiple Sclerosis Specialist Services Across England Sedigheh Zabihi, Claudia Cooper, Riffat Tanveer, Kate Petheram, and 9 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-7924929/v1 This work is licensed under a CC BY 4.0 License Status: Under Review Version 1 posted 9 You are reading this latest preprint version Abstract 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. Multiple Sclerosis Specialised services Disease Modifying therapies Care coordination Figures Figure 1 Introduction The number of disease modifying therapies (DMTs) for multiple sclerosis (MS) has expanded significantly since the initial licensing of interferon Beta in the late 1990s ( 1 ); around 20 are now available, with varying mechanisms of action, efficacy, and side effect profiles ( 2 ). DMTs have transformed the treatment and prognosis of MS ( 3 ). They have recently been licensed for the treatment of primary and secondary progressive MS ( 4 ), although treatment eligibility and efficacy for progressive disease remains an unmet need. The roll out of DMTs with centralised National Health Service (NHS) commissioning arrangements has resulted in the migration of DMT-related MS services to neuroscience centres. “DMT clinics” set up to manage interferon prescribing and monitoring, have evolved into centralised “MS services” commissioned within neuroscience centres, requiring patients travel to receive these effective treatments ( 5 , 6 ). Within a fixed funding envelope, this has reduced resources for community services. MS services are under increasing strain, needing to meet the needs of a diverse population across wide geographical areas, balancing disease-specific care with safety critical treatment monitoring and personalised management. Therefore, access to DMTs remains limited. A 2022 English national survey identified that only 56% of those eligible for DMTs were receiving treatment (decreased from 60% in 2019) ( 7 ). The number of people living with MS in the UK continues to increase ( 8 ), with DMT eligibility and availability of licensed products expanding. With increasing pressure and prioritisation of DMT-related services, those people with MS ineligible for DMTs have less access to neurologist appointments and other specialist services ( 7 ). Alongside this, specialist community and nursing services are often very limited outside of regional centres ( 5 , 6 ). MS teams are now evaluating how to manage caseloads and deliver care closer to home in line with national priorities, but funding for such initiatives remains limited ( 9 ). We aimed to explore how current service models align with the proposition for specialist services in Lord Darzi’s independent investigation of the NHS in England, published September 2024 to innovate and grow the specialist workforce ( 10 ), and with drives to shift care from hospitals to the community, and enable care at home wherever possible, both major foci of the NHS 10 year health plan for England ( 11 ) and 2025 neurology service specifications ( 12 ). In this context, we investigated staff experiences of different service models across England. We looked at staff-perceived strengths and challenges across and between MS services for people who are and are not eligible for DMTs, with the aim of informing future service design, in MS and other neurological diseases, including Alzheimer’s disease, for which the first DMTs are now becoming available ( 13 ). Methods We aimed to develop, deliver and analyse a survey across purposively sampled NHS MS services in England to capture diversity of service structures, processes and perspectives on challenges and successes in delivering quality care. Survey co-design Our survey was developed for this study. We reviewed published and unpublished previous surveys regarding MS services ( 7 , 14 ) to develop an initial survey draft, with questions exploring DMTs and non-DMT service structures, and communication and information for patients. We then invited academics, clinicians and people with lived experience of MS to participate in a series of co-design workshops. Prior to each workshop, a summary was circulated including an introduction to the aim of the survey, objectives and what to expect from the workshop (appendix A). We convened five workshops online between August and October 2024, with an iteratively developing draft survey presented in each workshop prior to moderated discussion. Eight clinical and academic experts, and nine people with lived experience participated, including one person participating via email. The final survey contained forty questions and took 45–60 minutes, comprising multiple-choice, short-answer and open-ended questions. Questions related to details of the respondent, service processes, available DMT and non-DMT specialist services, barriers and challenges to delivering DMTs, major challenges, and what they are most proud of. One section, regarding staff composition and service structures, was only completed by service leads, who were encouraged to use service data to aid accurate completion. An abridged version omitting section 2 was completed by neurologists, MS nurses, coordinators and other staff. The survey was accessed using the online software survey platform Qualtrics ( https://www.qualtrics.com/ ). A copy of the survey is provided in Appendix B. Data collection Seven MS specialist services were selected from across England based on their structure and geography to maximise diversity of service models and geographical reach. Clinical leads (Consultant Neurologists) from each service were approached by RD and invited to complete the survey or nominate a colleague with oversight of patient numbers, service structure and demand. These lead participants completed and were asked to identify up to four staff, who could bring different perspectives around service delivery, to complete the abridged survey. Participants were emailed an invitation to complete the survey with SZ via Microsoft Teams or via the survey link. Participants did not receive any compensation for taking part. Data analysis Data were exported from Qualtrics. We used standard summary statistics to describe the sample. Responses were compiled to create detailed ‘case study’ description of DMT, and non-DMT service structures and processes. Where figures were reported, respondents were asked to provide their level of confidence in their accuracy (very sure, somewhat sure, not sure at all); where accuracy was rated as “not sure at all”, data were not included. Where responses differed, those from assigned leads are presented. We conducted content analysis of responses to open-ended questions, using published methods ( 15 ). Some respondents worked in services in which the lead did not take part; these responses were analysed regardless of role and location of the responder. Two authors (SZ, RD) independently coded > 10% of responses for each question using inductive approaches, developed initial codes and then met to discuss a coding framework. Two authors (SZ, MM) coded the remaining responses. Ethics approval and consent Our study adhered to the Declaration of Helsinki. The survey was conducted as part of the NIHR Dementia and Neurodegeneration Policy Research Unit- Queen Mary University of London (DeNPRU-QM) National Provider Survey. The project is commissioned by the English Department of Health and Social Care (DHSC). Participants provided informed consent before completing the survey. The study was approved by National Research Ethics service and Health Research Authority on 14.5.24 (24/IEC08/0008). Results 5/7 services who were approached agreed to take part (Table S1 ). From these five services, seventeen staff initially expressed an interest in participating and twelve completed the survey (71%). However, no clinical lead took part from the fifth service, so we did not present it as a case. Respondents included six neurology consultants, three MS nurses, one MS physiotherapist, one care coordinator, and one clinical researcher. Respondents were working in their current roles for an average of 8 years (Standard Deviation, SD = 5.7). Participating services were based in Integrated Care Boards (ICBs) in Northeast and Yorkshire, Northwest, London, Southeast, and East of England. No services had a paediatric service. Service structures (summarised in Table 1 ) We summarise below the structures of our four case study services (Fig. 1 ), describing differences between them and commonalities. All services provide a point of contact with the MS nurse, assisted by a secretary or MS co-ordinator in two services. All four services offered patient-initiated follow-up (PIFU), where patients are seen only on direct request. In services A-C, most patients live within the commissioned area. All services provided a full range of DMT, except for service A, where most DMT were offered. All services reported discussing all patients switching/escalating DMT in MDT. In all services, the MS nurses were responsible for safety monitoring, assisted by the MS co-ordinator in 2 services. All services reported lower rates of follow up for those not eligible for, and/or not receiving DMT. Service A: Neurologist/MS teams travel to satellite units Overview In Service A the specialist central team travel to satellite sites to conduct clinics. This was the largest service in our case studies, by staffing (n = 28) and caseload (n = 2,800), and the only one not reporting rising referral rates (though new referral rates were unavailable); a third of patients were on DMTs, and it was the only service where most patients had been reviewed (by phone) in the past year. All patients were seen up to three times a year with > 80% of patients reviewed by phone at least once in the past year. Relatively few patients were jointly managed by a second neurology team based in a different hospital (< 10%). Core staff include general and MS specialist neurologists (10 FTE), MS nurses (3.7 FTE), a pharmacist (0.7 FTE), MS co-ordinator (1.6 FTE), research nurses (1.6 FTE) and trainees (6.5 FTE). While no specific resource shortages were highlighted, the service lead noted that timely follow-up is not always possible, and there is a risk that patients who do not attend appointments may “fall through the net”. DMT 34% (n = 322/947) of patients receive DMTs with 92 patients initiated in the past year. Initiation and infusion are dependent on the drug company’s support, in addition to the plans for at-home delivery services. Barriers in DMT delivery include patient-related (e.g. not attending appointments), and long waiting lists. A monthly one-hour multidisciplinary team (MDT) meeting is held (with the neuroradiologist attending alternate meetings) with additional email correspondence if needed. Most (80–100%) new patients are discussed in MDT. Non-DMT specialised services All patients have access to twelve specialised services including speech and language therapy, pain management, continence advice, cognitive neuropsychology, counselling, optometry, maternal medicine network, respiratory support, palliative care, imaging and third sector free MS services. A minority (10–20%) of patients have access to a dietetics service. The service reported struggling to offer support for functional neurological issues and highlighted an unmet need for a psychology assessment and treatment service with a remit that extends beyond managing cognitive impairments. Service B: Patient flow from DGH to specialist centre Overview this service had a relatively large caseload (2,100 patients), fewer new referrals (78 in the past year), more discharges (10–15 patients moved out of area in the past year) and a moderate staff team (12 members; 7.2 FTE). Core staff include MS specialist neurologists (1.2 FTE), MS nurses (3 FTE), physiotherapists (1.5 FTE), an occupational therapist (0.25 FTE), a research nurse (1 FTE), and a trainee (0.2 FTE). Patients receiving DMTs are followed up one to three times a year; patients not on DMTs are followed up less than once a year. In the past year, less than two-thirds of patients were reviewed. Like service A, relatively few patients were jointly managed by a second neurology team based in a different hospital (< 10%). DMT Currently, 38% (n = 800) of patients receive a DMT with 25–30 patients initiating in the past year. Pharmaceutical company nurses carry out DMT infusions and support in-home services for newer drugs. There is a shortage of beds for Ocrelizumab infusion and nursing capacity. In addition to the fortnightly regional MDT, another one-hour MDT is held every two weeks to cover a wider area of the ICB with a neuroradiologist. 80–100% of new patients are discussed in MDT. Non-DMT specialised services MS specialised physiotherapy, speech and language therapy, pain management, continence advice, cognitive neuropsychology, optometry, maternal medicine network, respiratory support, tissue viability practice, palliative care, imaging and third sector free MS services are available to all patients. In addition, up to half of patients have access to MS specialised occupational therapy within the ICB. Counselling, wheelchair services, sexual health and social services are provided by the ICB, with “ neuropsychology, neuropsychiatry and vocational rehabilitation require[ing] a faster approach to improve benefits to patients ”. Patients are referred to MS trust, MS society and MS therapy centres as they are highly accessible and provide additional support and network. Service C: MS team located within the DGH and networked to the neighbouring neuroscience centre Overview Service C has a relatively small caseload (n = 950), with high referral numbers in the past year (n = 120), few discharges and a small staff team (n = 8). As for service B, in the past year, less than two-thirds of patients were reviewed in-person and by phone. Like services A and B, relatively few patients (< 20%) lived outside the service’s commissioned area or were jointly managed by a second neurology team based in a different hospital (< 10%). Unlike services A and B, this service requires a confirmed or highly likely diagnosis of MS for referrals. NHS-funded MS specialist neurologists (1.6 FTE), neuro-physiotherapist (0.5 FTE), research nurse (0.2 FTE), trainee (0.2 FTE) and a coordinator (0.8 FTE) comprise the team with charity-funded MS nurses (2 FTE) (total:5.3 FTE). DMT 385 (40%) patients receive DMTs and the service does not currently rely on company support for its delivery. This service faces limited resources including MS nurse capacity for DMT delivery. The MS consultants attend regional MDT at the regional neuroscience centre monthly. There is a local MS team MDT, currently 2–3 times per month. The local MDT is supplemented with email correspondence between MS nurse and consultant. However, lack of administrative support and neuroradiologist undermines the efficacy of these meetings. 61–80% of new patients are discussed in MDT. Non-DMT specialised services All patients have access to MS specialised physiotherapy, speech and language therapy, continence advice, social prescription, rehabilitation, podiatry, optometry, tissue viability practice, respiratory support, palliative care and imaging within the ICB. Pain management and vocational rehabilitation is offered to 50 and 10–20% of patients within the ICB, respectively. Third sector free MS services are available to patients outside of the ICB. Access to psychological services represents an unmet need. Service D: Bidirectional flow of patients and experts between DGH and specialist services Overview Service D has a small, direct caseload relative to other services (n = 305) and a small staff team (n = 9) but with the highest reported number of new referrals (n = 176). The service also supports 700 patients within a wider area with small staff team. It is the only service where most clients (63%) were on DMTs; relatively higher proportion of patients from out of area (20–40%) and under joint follow-up with other services (20%). Patients receiving DMTs are followed up one to three times a year and patients who are not on DMTs receive follow-ups less than once a year. In the past year, 61–80% of patients received a face-to-face follow-up appointment. All core staff are funded by the NHS including general (2 FTE) and MS specialist neurologists (0.3 FTE), MS nurses (1.6 FTE), a pharmacist (0.5 FTE) and a SAS doctor (1 FTE); total 5.4 FTE. DMT Currently, 37% (n = 259) of patients receive a DMT. Infusions are reliant on company-funded nurses in some tertiary sites as well as home care. The distance patients need to travel to receive DMT is challenging, especially in cases of disability where they cannot use public transport and do not have enough resources to travel otherwise. A 30-minute virtual MDT is held once a month where three patients are discussed with the presence of a neuroradiologist. 61 to 80% of new patients are discussed in MDT with no barriers. Non-DMT specialised services MS specialised physiotherapy and occupational therapy, speech and language therapy, dietetics, rehabilitation, podiatry and tissue viability practice are available to 30, 40, 60, 10, 20, 20 and 90% of service patients, respectively. In addition, all patients have access to pain management, continence advice, optometry, respiratory support, palliative care and imaging. Strengths and challenges Clinical leads and staff members of services completed open-ended questions on the strengths of their services, the challenges, and ideas for future proofing. We consider these below with reference to the three “big shifts” in the English NHS 10-year plan: from hospital to community; from analogue to digital; from sickness to prevention. Ideas for future proofing DMT services (Table S2) Responses predominantly highlighted resource limitations, including issues around staff recruitment and retention, and rising caseload as a major challenge. Proposed solutions included “use of innovative artificial intelligence models to help with the administrative burden of work”, and reviewing service models: Neurology need to have a realistic decision about long-term neurological disorders management, and be willing to discharge more patients to neurorehab services and not insist on dual follow-up, so that they have capacity to see patients in a timely manner. Relationship with primary care One respondent indicated that shared management with primary care had improved in the past five years while four suggested that arrangements had become more challenging. Two respondents reported that patients found it more difficult to access primary care, resulting in an increase in queries unrelated to the MS service, while one reflected on the reluctance of primary care to accept shared care and conduct blood tests. The remainder (58.3%) indicated no change in their relationship with primary care services. Major challenges of the service (Table S3) Almost all responses included issues with staffing and resources. Implications of this resource gap included challenges with providing a good level of clinical care and responsiveness to all patients, and flexibility within the service to enable meaningful innovation and development. It was commented that some of these challenges reflected improved diagnostic process and outcomes for people with MS, which had led to increasing numbers of patients with a wider range of needs within the service without associated financial or systems level support. One response indicated the importance of MS nurses in accessing the community, and one highlighted the inequity of care resulting from centralised DMT delivery. One respondent focused on long waiting times for MDT review and practical challenges relating to review of external scans. One answer indicated lack of proper care for patients who are not eligible for DMTs: “ holistic care of non-DMT patients so they don’t have capacity to deal with complex and advanced MS patients ”. Aspects of services respondents were most proud of (Table S4) Seven answers focused on the quality of care their service provide including their cohesive and supportive team of staff, ability to provide care despite challenges, and adherence to guidelines. Five responses indicated the accessibility as the aspect they were most proud of (access to DMTs, quick approach and access to the community) and two responses mentioned the innovative services they offer. Discussion This study provides a case study review of selected MS specialist services in England demonstrating examples of service structures and common challenges. It demonstrates how variation in service structure creates opportunities for services to be tailored specifically to their community’s needs. Clinical leads of included services were either very or mostly confident about their caseload and had broad access to and knowledge of their service in data. In line with national statistics ( 16 ), 3/4 services reported an increase in number of new referrals. They also reported discharging less than 10% of their patients in the last year ( 17 ). Increasing prevalence of MS demands preparation of services to ensure their ability to manage increasing caseloads, a problem that will only increase with new diagnostic criteria enabling people to be diagnosed earlier in the disease ( 18 ). Most respondents identified limited resources and staff capacity as the major challenge in delivering DMTs. Limited number of appointments and staff to provide quality care to patients on DMT and those ineligible for DMT was stated frequently as a major challenge within the service. When asked about future-proofing, the majority of respondents focused on improving resources and increasing workforce size. NHS England has launched programmes like ‘Getting It Right First Time’ and the ‘Neuroscience Transformation’ to improve coordination, efficiency, and access to specialist care in an attempt to help address these issues ( 19 , 20 ). While inequitable access to DMTs for MS across the country is a concern, our survey shows a wide range of DMTs available across involved services. Whilst the reported 40% of services’ caseload receiving DMTs is lower than the national average of 56% of eligible patients ( 21 ), we did not collect information on the proportion of patients who are eligible for DMTs due to concerns around data availability. Another point is availability of at-home delivery of DMTs which will enable patients with disabilities to receive it at home. While three of services were offering home delivery, it was limited to a few DMTs, leaving other options inaccessible to patients unable to travel. Increasing their availability and reach will increase accessible equitable care, in line with the shift from hospital to community outlined in the NHS 10-year plan ( 11 ). Consistent with the existing evidence ( 7 ), patients on DMTs receive more appointments/interactions. In all services, patients on DMTs received a follow-up one to three times a year, while patients who were not on DMTs were receiving one or less than one follow-up appointment in a year. In line with the quality standards set by the national neurology advisory group (NNAG)( 22 ), each service has appointed a single point of contact for patients. However, we did not collect information on how queries are addressed. In all included services MDTs are held frequently with a neuroradiologist, supra-regional MDTs are accessible and specialised services for symptom management are offered mostly within the ICB. While some respondents count their teamwork and high-quality care as their strengths, improved working relationships between the core team members and other service providers are needed. As mentioned by some, the relationship between specialised services and primary care can benefit from improved understanding of both individual and shared responsibilities. If specific aspects of care are not accepted by either side, the other could become overwhelmed by patients’ queries; and creates further barriers in access to care for patients. Another aspect of the optimal care pathway ( 22 ) which is also highlighted in the NHS ten-year plan ( 11 ) is to shift from analogue to digital and use technology and innovation. Some services are already using technology to support with administrative tasks and complement MDTs, and as pointed out by some respondents it can be beneficial in future-proofing services and optimising process of treatment delivery. This study has important limitations. The number of services and staff who took part in the survey is low. Those willing to participate are likely to differ from services in general, so introducing selection bias. In this phase of the work, we only collected information from healthcare professionals in this survey, we plan to interview people with MS and their families for the second phase of the project. However, we were able to investigate the participant services in detail and build an understanding of them from different aspects. Conclusion MS is a complex disease which requires continuous coordinated multidisciplinary care. Regardless of eligibility for DMTs, all patients should have access to symptoms management services and reviews with MS specialists. In-depth characterisation of services presented in this study will enable development of other neurology specialist services to provide equitable and high-quality care for all. Abbreviations MS Multiple Sclerosis DMT Disease modifying therapies ICB Integrated Care Board MDT Multi-disciplinary team PIFU Patient-initiated follow-up NHS National Health Service NICE National Institute for Health and Care Excellence Declarations Ethics approval This research has been approved by the National Research Ethics service and Health Research Authority on 14/05/2024 (24/IEC08/0008). Consent for Publication Not applicable Availability of data and materials Data may be made available from the corresponding author upon reasonable request. Funding This research is funded through the NIHR Policy Research Unit in Dementia and Neurodegeneration – Queen Mary University of London (reference NIHR206110). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care. Competing interest Authors declare no competing interest Author Contribution SZ, RD and CC wrote the main manuscript text. RT, KP, SG and RD contributed MS services expertise. MM and SZ analysed data. GR and SB contributed policy research expertise. CH, RH and TP contributed lived experience expertise. CK managed the research programme that delivered the survey. All authors reviewed the final manuscript and made revisions for intellectual input. References Stamatellos VP, Papazisis G. Safety and Monitoring of the Treatment with Disease-Modifying Therapies (DMTs) for Multiple Sclerosis (MS). Curr Rev Clin Exp Pharmacol. 2023;18(1):39–50. Disease-modifying therapies for multiple sclerosis. | The BMJ [Internet]. [cited 2025 Jul 7]. Available from: https://www.bmj.com/content/363/bmj.k4674.abstract?casa_token=sg6cAKYZ6FoAAAAA:16J2jE_0YLEplSuT59uriSEUYSCFFJ0m_vqTQKCZzzVq0DgeO4TRbiTDg0y2JbZ833crZkfn3Fw McGinley MP, Goldschmidt CH, Rae-Grant AD. Diagnosis and Treatment of Multiple Sclerosis: A Review. JAMA. 2021;325(8):765–79. Rashid W, Ciccarelli O, Leary SM, Arun T, Doshi A, Evangelou N, et al. 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Optimal clinical care pathway for adults: Multiple Sclerosis [Internet]. 2024 [cited 2025 Jul 14]. Available from: https://www.mssociety.org.uk/sites/default/files/2024-12/NNAG%20MS%20optimal%20pathway%202024.pdf Tables Table 1 is available in the Supplementary Files section. Additional Declarations No competing interests reported. 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Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-7924929","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":553765731,"identity":"a09db58b-dba3-4506-b75a-ab940cf0d5c9","order_by":0,"name":"Sedigheh Zabihi","email":"","orcid":"","institution":"Wolfson Institute of Population Health, Queen Mary University of London","correspondingAuthor":false,"prefix":"","firstName":"Sedigheh","middleName":"","lastName":"Zabihi","suffix":""},{"id":553765732,"identity":"170294d6-e49f-4879-b3ba-533168dc7557","order_by":1,"name":"Claudia Cooper","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAAA/0lEQVRIiWNgGAWjYBAC/nYgwWMA59sAMXMDmCmBQ4vEYVQtaUDMiF+LgTNIC4J/mAgtzMzPJN4U2AFd2Hzswcc952XXzkhsYPhRw5A4swGXFjYzyTkGyQwSZ46lG854dtt4243EBsaeYwyJs3HawmAmzQMkDSRygIwDtxNBWhh4GxgS5+HUwv4NqKUeouXPgXNgLYx/8Wlx5gHZchiiheHAAbAWZpAtuBwmcZin2HKOwXEesF96DiQbbzvzsOGwzDEJY1ze529v33jjzZ9qOXCI/ThgJ7vtePLBh29qbGRnHMBhDRSAooYNxABHygHcsYIKEFpGwSgYBaNgFCADADH5WT2RpbhsAAAAAElFTkSuQmCC","orcid":"","institution":"Wolfson Institute of Population Health, Queen Mary University of London","correspondingAuthor":true,"prefix":"","firstName":"Claudia","middleName":"","lastName":"Cooper","suffix":""},{"id":553765733,"identity":"8a6d17f2-7577-4c2c-ae1e-4534ce8f03c9","order_by":2,"name":"Riffat Tanveer","email":"","orcid":"","institution":"Lancashire Teaching Hospital NHS Foundation Trust","correspondingAuthor":false,"prefix":"","firstName":"Riffat","middleName":"","lastName":"Tanveer","suffix":""},{"id":553765734,"identity":"57d43f39-0770-460c-94bd-062b9c0becaf","order_by":3,"name":"Kate Petheram","email":"","orcid":"","institution":"South Tyneside and Sunderland NHS Foundation Trust, Sunderland Royal Hospital","correspondingAuthor":false,"prefix":"","firstName":"Kate","middleName":"","lastName":"Petheram","suffix":""},{"id":553765735,"identity":"30fe842f-6945-4143-a997-e62ec1dce4c9","order_by":4,"name":"Sharmilee Gnanapavan","email":"","orcid":"","institution":"Barts Health, Royal London Hospital","correspondingAuthor":false,"prefix":"","firstName":"Sharmilee","middleName":"","lastName":"Gnanapavan","suffix":""},{"id":553765736,"identity":"4e58a013-3a3f-4ed4-a5ea-9f00eaf94060","order_by":5,"name":"Malvika Muralidhar","email":"","orcid":"","institution":"Wolfson Institute of Population Health, Queen Mary University of London","correspondingAuthor":false,"prefix":"","firstName":"Malvika","middleName":"","lastName":"Muralidhar","suffix":""},{"id":553765737,"identity":"0f521511-1640-4488-9a5e-5ed3009be05c","order_by":6,"name":"Greta Rait","email":"","orcid":"","institution":"University College London","correspondingAuthor":false,"prefix":"","firstName":"Greta","middleName":"","lastName":"Rait","suffix":""},{"id":553765738,"identity":"5d955cfd-5de9-47f7-915b-2b73ade46231","order_by":7,"name":"Sube Banerjee","email":"","orcid":"","institution":"University of Nottingham","correspondingAuthor":false,"prefix":"","firstName":"Sube","middleName":"","lastName":"Banerjee","suffix":""},{"id":553765739,"identity":"f840b97f-789a-4606-969d-2e50c013cf79","order_by":8,"name":"Clare Hadley","email":"","orcid":"","institution":"Wolfson Institute of Population Health, Queen Mary University of London","correspondingAuthor":false,"prefix":"","firstName":"Clare","middleName":"","lastName":"Hadley","suffix":""},{"id":553765740,"identity":"168b42c0-9959-4d68-82f3-2c2f42315e89","order_by":9,"name":"Rachel Horne","email":"","orcid":"","institution":"Wolfson Institute of Population Health, Queen Mary University of London","correspondingAuthor":false,"prefix":"","firstName":"Rachel","middleName":"","lastName":"Horne","suffix":""},{"id":553765741,"identity":"d280011e-a290-4c6e-85fe-10876c514f79","order_by":10,"name":"Tommy Pouncy","email":"","orcid":"","institution":"Wolfson Institute of Population Health, Queen Mary University of London","correspondingAuthor":false,"prefix":"","firstName":"Tommy","middleName":"","lastName":"Pouncy","suffix":""},{"id":553765742,"identity":"12b25504-5c7c-4709-95b4-4cea8a7435aa","order_by":11,"name":"Charlotte Kenten","email":"","orcid":"","institution":"Wolfson Institute of Population Health, Queen Mary University of London","correspondingAuthor":false,"prefix":"","firstName":"Charlotte","middleName":"","lastName":"Kenten","suffix":""},{"id":553765743,"identity":"53cf25d1-092c-4a9c-8b67-a876dfe2d584","order_by":12,"name":"Ruth Dobson","email":"","orcid":"","institution":"Wolfson Institute of Population Health, Queen Mary University of London","correspondingAuthor":false,"prefix":"","firstName":"Ruth","middleName":"","lastName":"Dobson","suffix":""}],"badges":[],"createdAt":"2025-10-22 15:08:28","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-7924929/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-7924929/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":97780718,"identity":"e21e96a6-994b-4cad-a3df-59a969c1191b","added_by":"auto","created_at":"2025-12-09 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1","display":"","copyAsset":false,"role":"figure","size":500781,"visible":true,"origin":"","legend":"\u003cp\u003eService Models in each case study\u003c/p\u003e","description":"","filename":"1.png","url":"https://assets-eu.researchsquare.com/files/rs-7924929/v1/d8818703ee4237b8f72845c3.png"},{"id":97903025,"identity":"1d91f266-048a-4eed-92a9-f2333b638a0b","added_by":"auto","created_at":"2025-12-10 15:54:10","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":1258039,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-7924929/v1/9b56d467-ee46-48a3-984f-fc4331b1efd6.pdf"},{"id":97897648,"identity":"23014d3e-7cee-44f3-b370-973b305dbf8a","added_by":"auto","created_at":"2025-12-10 15:38:02","extension":"docx","order_by":1,"title":"","display":"","copyAsset":false,"role":"supplement","size":29518,"visible":true,"origin":"","legend":"","description":"","filename":"Table.docx","url":"https://assets-eu.researchsquare.com/files/rs-7924929/v1/1f050cb73785ce7dce4f240f.docx"},{"id":97780720,"identity":"c901bbcc-a9cc-4163-90ff-03f8dd332abe","added_by":"auto","created_at":"2025-12-09 09:50:50","extension":"docx","order_by":2,"title":"","display":"","copyAsset":false,"role":"supplement","size":29824,"visible":true,"origin":"","legend":"","description":"","filename":"Supplementarymaterials.docx","url":"https://assets-eu.researchsquare.com/files/rs-7924929/v1/967d88abefca8a4479b68a32.docx"}],"financialInterests":"No competing interests reported.","formattedTitle":"\u003cp\u003eImplementing Disease Modifying Therapies in Neurodegenerative Diseases: Lessons From a Survey of Multiple Sclerosis Specialist Services Across England\u003c/p\u003e","fulltext":[{"header":"Introduction","content":"\u003cp\u003eThe number of disease modifying therapies (DMTs) for multiple sclerosis (MS) has expanded significantly since the initial licensing of interferon Beta in the late 1990s (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e); around 20 are now available, with varying mechanisms of action, efficacy, and side effect profiles (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e). DMTs have transformed the treatment and prognosis of MS (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e). They have recently been licensed for the treatment of primary and secondary progressive MS (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e), although treatment eligibility and efficacy for progressive disease remains an unmet need.\u003c/p\u003e\u003cp\u003eThe roll out of DMTs with centralised National Health Service (NHS) commissioning arrangements has resulted in the migration of DMT-related MS services to neuroscience centres. \u0026ldquo;DMT clinics\u0026rdquo; set up to manage interferon prescribing and monitoring, have evolved into centralised \u0026ldquo;MS services\u0026rdquo; commissioned within neuroscience centres, requiring patients travel to receive these effective treatments (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e, \u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e). Within a fixed funding envelope, this has reduced resources for community services. MS services are under increasing strain, needing to meet the needs of a diverse population across wide geographical areas, balancing disease-specific care with safety critical treatment monitoring and personalised management. Therefore, access to DMTs remains limited. A 2022 English national survey identified that only 56% of those eligible for DMTs were receiving treatment (decreased from 60% in 2019) (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e). The number of people living with MS in the UK continues to increase (\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e), with DMT eligibility and availability of licensed products expanding. With increasing pressure and prioritisation of DMT-related services, those people with MS ineligible for DMTs have less access to neurologist appointments and other specialist services (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e). Alongside this, specialist community and nursing services are often very limited outside of regional centres (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e, \u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e). MS teams are now evaluating how to manage caseloads and deliver care closer to home in line with national priorities, but funding for such initiatives remains limited (\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eWe aimed to explore how current service models align with the proposition for specialist services in Lord Darzi\u0026rsquo;s independent investigation of the NHS in England, published September 2024 to innovate and grow the specialist workforce (\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e), and with drives to shift care from hospitals to the community, and enable care at home wherever possible, both major foci of the NHS 10 year health plan for England (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e) and 2025 neurology service specifications (\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e). In this context, we investigated staff experiences of different service models across England. We looked at staff-perceived strengths and challenges across and between MS services for people who are and are not eligible for DMTs, with the aim of informing future service design, in MS and other neurological diseases, including Alzheimer\u0026rsquo;s disease, for which the first DMTs are now becoming available (\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e).\u003c/p\u003e"},{"header":"Methods","content":"\u003cp\u003e We aimed to develop, deliver and analyse a survey across purposively sampled NHS MS services in England to capture diversity of service structures, processes and perspectives on challenges and successes in delivering quality care.\u003c/p\u003e\u003cdiv id=\"Sec3\" class=\"Section2\"\u003e\u003ch2\u003eSurvey co-design\u003c/h2\u003e\u003cp\u003eOur survey was developed for this study. We reviewed published and unpublished previous surveys regarding MS services (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e, \u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e) to develop an initial survey draft, with questions exploring DMTs and non-DMT service structures, and communication and information for patients. We then invited academics, clinicians and people with lived experience of MS to participate in a series of co-design workshops. Prior to each workshop, a summary was circulated including an introduction to the aim of the survey, objectives and what to expect from the workshop (appendix A). We convened five workshops online between August and October 2024, with an iteratively developing draft survey presented in each workshop prior to moderated discussion. Eight clinical and academic experts, and nine people with lived experience participated, including one person participating via email.\u003c/p\u003e\u003cp\u003eThe final survey contained forty questions and took 45\u0026ndash;60 minutes, comprising multiple-choice, short-answer and open-ended questions. Questions related to details of the respondent, service processes, available DMT and non-DMT specialist services, barriers and challenges to delivering DMTs, major challenges, and what they are most proud of. One section, regarding staff composition and service structures, was only completed by service leads, who were encouraged to use service data to aid accurate completion. An abridged version omitting section 2 was completed by neurologists, MS nurses, coordinators and other staff. The survey was accessed using the online software survey platform Qualtrics (\u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://www.qualtrics.com/\u003c/span\u003e\u003cspan address=\"https://www.qualtrics.com/\" targettype=\"URL\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e). A copy of the survey is provided in Appendix B.\u003c/p\u003e\u003c/div\u003e\n\u003ch3\u003eData collection\u003c/h3\u003e\n\u003cp\u003eSeven MS specialist services were selected from across England based on their structure and geography to maximise diversity of service models and geographical reach. Clinical leads (Consultant Neurologists) from each service were approached by RD and invited to complete the survey or nominate a colleague with oversight of patient numbers, service structure and demand. These lead participants completed and were asked to identify up to four staff, who could bring different perspectives around service delivery, to complete the abridged survey. Participants were emailed an invitation to complete the survey with SZ via Microsoft Teams or via the survey link. Participants did not receive any compensation for taking part.\u003c/p\u003e\u003cdiv id=\"Sec5\" class=\"Section2\"\u003e\u003ch2\u003eData analysis\u003c/h2\u003e\u003cp\u003eData were exported from Qualtrics. We used standard summary statistics to describe the sample. Responses were compiled to create detailed \u0026lsquo;case study\u0026rsquo; description of DMT, and non-DMT service structures and processes. Where figures were reported, respondents were asked to provide their level of confidence in their accuracy (very sure, somewhat sure, not sure at all); where accuracy was rated as \u0026ldquo;not sure at all\u0026rdquo;, data were not included. Where responses differed, those from assigned leads are presented.\u003c/p\u003e\u003cp\u003eWe conducted content analysis of responses to open-ended questions, using published methods (\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e). Some respondents worked in services in which the lead did not take part; these responses were analysed regardless of role and location of the responder. Two authors (SZ, RD) independently coded\u0026thinsp;\u0026gt;\u0026thinsp;10% of responses for each question using inductive approaches, developed initial codes and then met to discuss a coding framework. Two authors (SZ, MM) coded the remaining responses.\u003c/p\u003e\u003c/div\u003e\n\u003ch3\u003eEthics approval and consent\u003c/h3\u003e\n\u003cp\u003e Our study adhered to the Declaration of Helsinki. The survey was conducted as part of the NIHR Dementia and Neurodegeneration Policy Research Unit- Queen Mary University of London (DeNPRU-QM) National Provider Survey. The project is commissioned by the English Department of Health and Social Care (DHSC). Participants provided informed consent before completing the survey. The study was approved by National Research Ethics service and Health Research Authority on 14.5.24 (24/IEC08/0008).\u003c/p\u003e"},{"header":"Results","content":"\u003cp\u003e5/7 services who were approached agreed to take part (Table \u003cspan class=\"InternalRef\"\u003eS1\u003c/span\u003e). From these five services, seventeen staff initially expressed an interest in participating and twelve completed the survey (71%). However, no clinical lead took part from the fifth service, so we did not present it as a case. Respondents included six neurology consultants, three MS nurses, one MS physiotherapist, one care coordinator, and one clinical researcher. Respondents were working in their current roles for an average of 8 years (Standard Deviation, SD\u0026thinsp;=\u0026thinsp;5.7). Participating services were based in Integrated Care Boards (ICBs) in Northeast and Yorkshire, Northwest, London, Southeast, and East of England. No services had a paediatric service.\u003c/p\u003e\n\u003cdiv id=\"Sec8\" class=\"Section2\"\u003e\n \u003ch2\u003eService structures (summarised in Table \u003cspan class=\"InternalRef\"\u003e1\u003c/span\u003e)\u003c/h2\u003e\n \u003cp\u003eWe summarise below the structures of our four case study services (Fig. \u003cspan class=\"InternalRef\"\u003e1\u003c/span\u003e), describing differences between them and commonalities. All services provide a point of contact with the MS nurse, assisted by a secretary or MS co-ordinator in two services. All four services offered patient-initiated follow-up (PIFU), where patients are seen only on direct request. In services A-C, most patients live within the commissioned area. All services provided a full range of DMT, except for service A, where most DMT were offered. All services reported discussing all patients switching/escalating DMT in MDT. In all services, the MS nurses were responsible for safety monitoring, assisted by the MS co-ordinator in 2 services. All services reported lower rates of follow up for those not eligible for, and/or not receiving DMT.\u003c/p\u003e\n\u003c/div\u003e\n\u003ch3\u003eService A: Neurologist/MS teams travel to satellite units\u003c/h3\u003e\n\u003cp\u003e\u003cstrong\u003eOverview\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eIn Service A the specialist central team travel to satellite sites to conduct clinics. This was the largest service in our case studies, by staffing (n\u0026thinsp;=\u0026thinsp;28) and caseload (n\u0026thinsp;=\u0026thinsp;2,800), and the only one not reporting rising referral rates (though new referral rates were unavailable); a third of patients were on DMTs, and it was the only service where most patients had been reviewed (by phone) in the past year. All patients were seen up to three times a year with \u0026gt;\u0026thinsp;80% of patients reviewed by phone at least once in the past year. Relatively few patients were jointly managed by a second neurology team based in a different hospital (\u0026lt;\u0026thinsp;10%).\u003c/p\u003e\n\u003cp\u003eCore staff include general and MS specialist neurologists (10 FTE), MS nurses (3.7 FTE), a pharmacist (0.7 FTE), MS co-ordinator (1.6 FTE), research nurses (1.6 FTE) and trainees (6.5 FTE). While no specific resource shortages were highlighted, the service lead noted that timely follow-up is not always possible, and there is a risk that patients who do not attend appointments may \u0026ldquo;fall through the net\u0026rdquo;.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eDMT\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e34% (n\u0026thinsp;=\u0026thinsp;322/947) of patients receive DMTs with 92 patients initiated in the past year. Initiation and infusion are dependent on the drug company\u0026rsquo;s support, in addition to the plans for at-home delivery services. Barriers in DMT delivery include patient-related (e.g. not attending appointments), and long waiting lists. A monthly one-hour multidisciplinary team (MDT) meeting is held (with the neuroradiologist attending alternate meetings) with additional email correspondence if needed. Most (80\u0026ndash;100%) new patients are discussed in MDT.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eNon-DMT specialised services\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eAll patients have access to twelve specialised services including speech and language therapy, pain management, continence advice, cognitive neuropsychology, counselling, optometry, maternal medicine network, respiratory support, palliative care, imaging and third sector free MS services. A minority (10\u0026ndash;20%) of patients have access to a dietetics service. The service reported struggling to offer support for functional neurological issues and highlighted an unmet need for a psychology assessment and treatment service with a remit that extends beyond managing cognitive impairments.\u003c/p\u003e\n\u003ch3\u003eService B: Patient flow from DGH to specialist centre\u003c/h3\u003e\n\u003cp\u003e\u003cstrong\u003eOverview\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003ethis service had a relatively large caseload (2,100 patients), fewer new referrals (78 in the past year), more discharges (10\u0026ndash;15 patients moved out of area in the past year) and a moderate staff team (12 members; 7.2 FTE). Core staff include MS specialist neurologists (1.2 FTE), MS nurses (3 FTE), physiotherapists (1.5 FTE), an occupational therapist (0.25 FTE), a research nurse (1 FTE), and a trainee (0.2 FTE). Patients receiving DMTs are followed up one to three times a year; patients not on DMTs are followed up less than once a year. In the past year, less than two-thirds of patients were reviewed. Like service A, relatively few patients were jointly managed by a second neurology team based in a different hospital (\u0026lt;\u0026thinsp;10%).\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eDMT\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eCurrently, 38% (n\u0026thinsp;=\u0026thinsp;800) of patients receive a DMT with 25\u0026ndash;30 patients initiating in the past year. Pharmaceutical company nurses carry out DMT infusions and support in-home services for newer drugs. There is a shortage of beds for Ocrelizumab infusion and nursing capacity. In addition to the fortnightly regional MDT, another one-hour MDT is held every two weeks to cover a wider area of the ICB with a neuroradiologist. 80\u0026ndash;100% of new patients are discussed in MDT.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eNon-DMT specialised services\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eMS specialised physiotherapy, speech and language therapy, pain management, continence advice, cognitive neuropsychology, optometry, maternal medicine network, respiratory support, tissue viability practice, palliative care, imaging and third sector free MS services are available to all patients. In addition, up to half of patients have access to MS specialised occupational therapy within the ICB. Counselling, wheelchair services, sexual health and social services are provided by the ICB, with \u0026ldquo;\u003cem\u003eneuropsychology, neuropsychiatry and vocational rehabilitation require[ing] a faster approach to improve benefits to patients\u003c/em\u003e\u0026rdquo;. Patients are referred to MS trust, MS society and MS therapy centres as they are highly accessible and provide additional support and network.\u003c/p\u003e\n\u003cdiv id=\"Sec11\" class=\"Section2\"\u003e\n \u003ch2\u003eService C: MS team located within the DGH and networked to the neighbouring neuroscience centre\u003c/h2\u003e\n \u003cp\u003e\u003cstrong\u003eOverview\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003eService C has a relatively small caseload (n\u0026thinsp;=\u0026thinsp;950), with high referral numbers in the past year (n\u0026thinsp;=\u0026thinsp;120), few discharges and a small staff team (n\u0026thinsp;=\u0026thinsp;8). As for service B, in the past year, less than two-thirds of patients were reviewed in-person and by phone. Like services A and B, relatively few patients (\u0026lt;\u0026thinsp;20%) lived outside the service\u0026rsquo;s commissioned area or were jointly managed by a second neurology team based in a different hospital (\u0026lt;\u0026thinsp;10%).\u003c/p\u003e\n \u003cp\u003e\u003cbr\u003e\u003c/p\u003e\n \u003cp\u003eUnlike services A and B, this service requires a confirmed or highly likely diagnosis of MS for referrals. NHS-funded MS specialist neurologists (1.6 FTE), neuro-physiotherapist (0.5 FTE), research nurse (0.2 FTE), trainee (0.2 FTE) and a coordinator (0.8 FTE) comprise the team with charity-funded MS nurses (2 FTE) (total:5.3 FTE).\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003eDMT\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e385 (40%) patients receive DMTs and the service does not currently rely on company support for its delivery. This service faces limited resources including MS nurse capacity for DMT delivery. The MS consultants attend regional MDT at the regional neuroscience centre monthly. There is a local MS team MDT, currently 2\u0026ndash;3 times per month. The local MDT is supplemented with email correspondence between MS nurse and consultant. However, lack of administrative support and neuroradiologist undermines the efficacy of these meetings. 61\u0026ndash;80% of new patients are discussed in MDT.\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003eNon-DMT specialised services\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003eAll patients have access to MS specialised physiotherapy, speech and language therapy, continence advice, social prescription, rehabilitation, podiatry, optometry, tissue viability practice, respiratory support, palliative care and imaging within the ICB. Pain management and vocational rehabilitation is offered to 50 and 10\u0026ndash;20% of patients within the ICB, respectively. Third sector free MS services are available to patients outside of the ICB. Access to psychological services represents an unmet need.\u003c/p\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec12\" class=\"Section2\"\u003e\n \u003ch2\u003eService D: Bidirectional flow of patients and experts between DGH and specialist services\u003c/h2\u003e\n \u003cp\u003e\u003cstrong\u003eOverview\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003eService D has a small, direct caseload relative to other services (n\u0026thinsp;=\u0026thinsp;305) and a small staff team (n\u0026thinsp;=\u0026thinsp;9) but with the highest reported number of new referrals (n\u0026thinsp;=\u0026thinsp;176). The service also supports 700 patients within a wider area with small staff team. It is the only service where most clients (63%) were on DMTs; relatively higher proportion of patients from out of area (20\u0026ndash;40%) and under joint follow-up with other services (20%).\u003c/p\u003e\n \u003cp\u003ePatients receiving DMTs are followed up one to three times a year and patients who are not on DMTs receive follow-ups less than once a year. In the past year, 61\u0026ndash;80% of patients received a face-to-face follow-up appointment. All core staff are funded by the NHS including general (2 FTE) and MS specialist neurologists (0.3 FTE), MS nurses (1.6 FTE), a pharmacist (0.5 FTE) and a SAS doctor (1 FTE); total 5.4 FTE.\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003eDMT\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003eCurrently, 37% (n\u0026thinsp;=\u0026thinsp;259) of patients receive a DMT. Infusions are reliant on company-funded nurses in some tertiary sites as well as home care. The distance patients need to travel to receive DMT is challenging, especially in cases of disability where they cannot use public transport and do not have enough resources to travel otherwise. A 30-minute virtual MDT is held once a month where three patients are discussed with the presence of a neuroradiologist. 61 to 80% of new patients are discussed in MDT with no barriers.\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003eNon-DMT specialised services\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003eMS specialised physiotherapy and occupational therapy, speech and language therapy, dietetics, rehabilitation, podiatry and tissue viability practice are available to 30, 40, 60, 10, 20, 20 and 90% of service patients, respectively. In addition, all patients have access to pain management, continence advice, optometry, respiratory support, palliative care and imaging.\u003c/p\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec13\" class=\"Section2\"\u003e\n \u003ch2\u003eStrengths and challenges\u003c/h2\u003e\n \u003cp\u003eClinical leads and staff members of services completed open-ended questions on the strengths of their services, the challenges, and ideas for future proofing. We consider these below with reference to the three \u0026ldquo;big shifts\u0026rdquo; in the English NHS 10-year plan: from hospital to community; from analogue to digital; from sickness to prevention.\u003c/p\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec14\" class=\"Section2\"\u003e\n \u003ch2\u003eIdeas for future proofing DMT services (Table S2)\u003c/h2\u003e\n \u003cp\u003eResponses predominantly highlighted resource limitations, including issues around staff recruitment and retention, and rising caseload as a major challenge. Proposed solutions included \u0026ldquo;use of innovative artificial intelligence models to help with the administrative burden of work\u0026rdquo;, and reviewing service models:\u003c/p\u003e\n \u003cdiv class=\"BlockQuote\"\u003e\n \u003cp\u003e\u003cem\u003eNeurology need to have a realistic decision about long-term neurological disorders management, and be willing to discharge more patients to neurorehab services and not insist on dual follow-up, so that they have capacity to see patients in a timely manner.\u003c/em\u003e\u003c/p\u003e\n \u003c/div\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec15\" class=\"Section2\"\u003e\n \u003ch2\u003eRelationship with primary care\u003c/h2\u003e\n \u003cp\u003eOne respondent indicated that shared management with primary care had improved in the past five years while four suggested that arrangements had become more challenging. Two respondents reported that patients found it more difficult to access primary care, resulting in an increase in queries unrelated to the MS service, while one reflected on the reluctance of primary care to accept shared care and conduct blood tests. The remainder (58.3%) indicated no change in their relationship with primary care services.\u003c/p\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec16\" class=\"Section2\"\u003e\n \u003ch2\u003eMajor challenges of the service (Table S3)\u003c/h2\u003e\n \u003cp\u003eAlmost all responses included issues with staffing and resources. Implications of this resource gap included challenges with providing a good level of clinical care and responsiveness to all patients, and flexibility within the service to enable meaningful innovation and development. It was commented that some of these challenges reflected improved diagnostic process and outcomes for people with MS, which had led to increasing numbers of patients with a wider range of needs within the service without associated financial or systems level support.\u003c/p\u003e\n \u003cp\u003eOne response indicated the importance of MS nurses in accessing the community, and one highlighted the inequity of care resulting from centralised DMT delivery. One respondent focused on long waiting times for MDT review and practical challenges relating to review of external scans. One answer indicated lack of proper care for patients who are not eligible for DMTs: \u0026ldquo;\u003cem\u003eholistic care of non-DMT patients so they don\u0026rsquo;t have capacity to deal with complex and advanced MS patients\u003c/em\u003e\u0026rdquo;.\u003c/p\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec17\" class=\"Section2\"\u003e\n \u003ch2\u003eAspects of services respondents were most proud of (Table S4)\u003c/h2\u003e\n \u003cp\u003eSeven answers focused on the quality of care their service provide including their cohesive and supportive team of staff, ability to provide care despite challenges, and adherence to guidelines. Five responses indicated the accessibility as the aspect they were most proud of (access to DMTs, quick approach and access to the community) and two responses mentioned the innovative services they offer.\u003c/p\u003e\n\u003c/div\u003e"},{"header":"Discussion","content":"\u003cp\u003e This study provides a case study review of selected MS specialist services in England demonstrating examples of service structures and common challenges. It demonstrates how variation in service structure creates opportunities for services to be tailored specifically to their community\u0026rsquo;s needs. Clinical leads of included services were either very or mostly confident about their caseload and had broad access to and knowledge of their service in data. In line with national statistics (\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e), 3/4 services reported an increase in number of new referrals. They also reported discharging less than 10% of their patients in the last year (\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e). Increasing prevalence of MS demands preparation of services to ensure their ability to manage increasing caseloads, a problem that will only increase with new diagnostic criteria enabling people to be diagnosed earlier in the disease (\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e). Most respondents identified limited resources and staff capacity as the major challenge in delivering DMTs. Limited number of appointments and staff to provide quality care to patients on DMT and those ineligible for DMT was stated frequently as a major challenge within the service. When asked about future-proofing, the majority of respondents focused on improving resources and increasing workforce size. NHS England has launched programmes like \u0026lsquo;Getting It Right First Time\u0026rsquo; and the \u0026lsquo;Neuroscience Transformation\u0026rsquo; to improve coordination, efficiency, and access to specialist care in an attempt to help address these issues (\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e, \u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eWhile inequitable access to DMTs for MS across the country is a concern, our survey shows a wide range of DMTs available across involved services. Whilst the reported 40% of services\u0026rsquo; caseload receiving DMTs is lower than the national average of 56% of eligible patients (\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e), we did not collect information on the proportion of patients who are eligible for DMTs due to concerns around data availability. Another point is availability of at-home delivery of DMTs which will enable patients with disabilities to receive it at home. While three of services were offering home delivery, it was limited to a few DMTs, leaving other options inaccessible to patients unable to travel. Increasing their availability and reach will increase accessible equitable care, in line with the shift from hospital to community outlined in the NHS 10-year plan (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e). Consistent with the existing evidence (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e), patients on DMTs receive more appointments/interactions. In all services, patients on DMTs received a follow-up one to three times a year, while patients who were not on DMTs were receiving one or less than one follow-up appointment in a year. In line with the quality standards set by the national neurology advisory group (NNAG)(\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e), each service has appointed a single point of contact for patients. However, we did not collect information on how queries are addressed. In all included services MDTs are held frequently with a neuroradiologist, supra-regional MDTs are accessible and specialised services for symptom management are offered mostly within the ICB. While some respondents count their teamwork and high-quality care as their strengths, improved working relationships between the core team members and other service providers are needed. As mentioned by some, the relationship between specialised services and primary care can benefit from improved understanding of both individual and shared responsibilities. If specific aspects of care are not accepted by either side, the other could become overwhelmed by patients\u0026rsquo; queries; and creates further barriers in access to care for patients. Another aspect of the optimal care pathway (\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e) which is also highlighted in the NHS ten-year plan (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e) is to shift from analogue to digital and use technology and innovation. Some services are already using technology to support with administrative tasks and complement MDTs, and as pointed out by some respondents it can be beneficial in future-proofing services and optimising process of treatment delivery.\u003c/p\u003e\u003cp\u003eThis study has important limitations. The number of services and staff who took part in the survey is low. Those willing to participate are likely to differ from services in general, so introducing selection bias. In this phase of the work, we only collected information from healthcare professionals in this survey, we plan to interview people with MS and their families for the second phase of the project. However, we were able to investigate the participant services in detail and build an understanding of them from different aspects.\u003c/p\u003e"},{"header":"Conclusion","content":"\u003cp\u003eMS is a complex disease which requires continuous coordinated multidisciplinary care. Regardless of eligibility for DMTs, all patients should have access to symptoms management services and reviews with MS specialists. In-depth characterisation of services presented in this study will enable development of other neurology specialist services to provide equitable and high-quality care for all.\u003c/p\u003e"},{"header":"Abbreviations","content":"\u003cdiv class=\"DefinitionList\"\u003e\u003cdiv class=\"DefinitionListEntry\"\u003e\u003cdiv class=\"Term\"\u003eMS\u003c/div\u003e\u003cdiv class=\"Description\"\u003e\u003cp\u003eMultiple Sclerosis\u003c/p\u003e\u003c/div\u003e\u003c/div\u003e\u003cdiv class=\"DefinitionListEntry\"\u003e\u003cdiv class=\"Term\"\u003eDMT\u003c/div\u003e\u003cdiv class=\"Description\"\u003e\u003cp\u003eDisease modifying therapies\u003c/p\u003e\u003c/div\u003e\u003c/div\u003e\u003cdiv class=\"DefinitionListEntry\"\u003e\u003cdiv class=\"Term\"\u003eICB\u003c/div\u003e\u003cdiv class=\"Description\"\u003e\u003cp\u003eIntegrated Care Board\u003c/p\u003e\u003c/div\u003e\u003c/div\u003e\u003cdiv class=\"DefinitionListEntry\"\u003e\u003cdiv class=\"Term\"\u003eMDT\u003c/div\u003e\u003cdiv class=\"Description\"\u003e\u003cp\u003eMulti-disciplinary team\u003c/p\u003e\u003c/div\u003e\u003c/div\u003e\u003cdiv class=\"DefinitionListEntry\"\u003e\u003cdiv class=\"Term\"\u003ePIFU\u003c/div\u003e\u003cdiv class=\"Description\"\u003e\u003cp\u003ePatient-initiated follow-up\u003c/p\u003e\u003c/div\u003e\u003c/div\u003e\u003cdiv class=\"DefinitionListEntry\"\u003e\u003cdiv class=\"Term\"\u003eNHS\u003c/div\u003e\u003cdiv class=\"Description\"\u003e\u003cp\u003eNational Health Service\u003c/p\u003e\u003c/div\u003e\u003c/div\u003e\u003cdiv class=\"DefinitionListEntry\"\u003e\u003cdiv class=\"Term\"\u003eNICE\u003c/div\u003e\u003cdiv class=\"Description\"\u003e\u003cp\u003eNational Institute for Health and Care Excellence\u003c/p\u003e\u003c/div\u003e\u003c/div\u003e\u003c/div\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eEthics approval\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis research has been approved by the National Research Ethics service and Health Research Authority on 14/05/2024 (24/IEC08/0008).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConsent for Publication\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eNot applicable\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAvailability of data and materials\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eData may be made available from the corresponding author upon reasonable request.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFunding\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis research is funded through the NIHR Policy Research Unit in Dementia and Neurodegeneration \u0026ndash; Queen Mary University of London (reference NIHR206110). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCompeting interest\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eAuthors declare no competing interest\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthor Contribution\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eSZ, RD and CC wrote the main manuscript text. RT, KP, SG and RD contributed MS services expertise. MM and SZ analysed data. GR and SB contributed policy research expertise. CH, RH and TP contributed lived experience expertise. CK managed the research programme that delivered the survey. All authors reviewed the final manuscript and made revisions for intellectual input.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eStamatellos VP, Papazisis G. Safety and Monitoring of the Treatment with Disease-Modifying Therapies (DMTs) for Multiple Sclerosis (MS). 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Available from: \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://www.researchsquare.com/article/rs-6322268/v1v(direct\u003c/span\u003e\u003cspan address=\"https://www.researchsquare.com/article/rs-6322268/v1v(direct\" targettype=\"URL\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eTrust MS. Generating Evidence in MS Services (GEMSS) | MS Trust [Internet]. [cited 2025 Jul 3]. Available from: \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://mstrust.org.uk/health-professionals/resources/service-development/generating-evidence-ms-services-gemss\u003c/span\u003e\u003cspan address=\"https://mstrust.org.uk/health-professionals/resources/service-development/generating-evidence-ms-services-gemss\" targettype=\"URL\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eElo S, Kyng\u0026auml;s H. The qualitative content analysis process. J Adv Nurs. 2008;62(1):107\u0026ndash;15.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eTrust MS. The number of people living with MS in the UK increases | MS Trust [Internet]. [cited 2025 Jul 13]. Available from: \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://mstrust.org.uk/news/number-people-living-ms-uk-increases\u003c/span\u003e\u003cspan address=\"https://mstrust.org.uk/news/number-people-living-ms-uk-increases\" targettype=\"URL\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eMS in the UK | MS Society [Internet]. [cited 2025 Jul 13]. Available from: \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://www.mssociety.org.uk/what-we-do/our-work/our-evidence/ms-in-the-uk\u003c/span\u003e\u003cspan address=\"https://www.mssociety.org.uk/what-we-do/our-work/our-evidence/ms-in-the-uk\" targettype=\"URL\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eMontalban X, Lebrun-Fr\u0026eacute;nay C, Oh J, Arrambide G, Moccia M, Amato MP, et al. Diagnosis of multiple sclerosis: 2024 revisions of the McDonald criteria. Lancet Neurol. 2025;24(10):850\u0026ndash;65.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eThe Getting It Right First. Time (GIRFT) programme [Internet]. The Neurological Alliance. [cited 2025 Jul 13]. Available from: \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://www.neural.org.uk/the-getting-it-right-first-time-girft-programme/\u003c/span\u003e\u003cspan address=\"https://www.neural.org.uk/the-getting-it-right-first-time-girft-programme/\" targettype=\"URL\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eWhat is NHS England Neuroscience Transformation Programme? [Internet]. The Neurological Alliance. [cited 2025 Jul 13]. Available from: \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://www.neural.org.uk/what-is-nhs-england-neuroscience-transformation-programme/\u003c/span\u003e\u003cspan address=\"https://www.neural.org.uk/what-is-nhs-england-neuroscience-transformation-programme/\" targettype=\"URL\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eIs access to. treatment still a lottery? | MS Society [Internet]. [cited 2025 Jul 3]. Available from: \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://www.mssociety.org.uk/get-involved/campaign-with-us/treat-me-right/is-access-to-treatment-a-lottery\u003c/span\u003e\u003cspan address=\"https://www.mssociety.org.uk/get-involved/campaign-with-us/treat-me-right/is-access-to-treatment-a-lottery\" targettype=\"URL\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eNational Neurosciences Advisory Group (NNAG). Optimal clinical care pathway for adults: Multiple Sclerosis [Internet]. 2024 [cited 2025 Jul 14]. Available from: \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://www.mssociety.org.uk/sites/default/files/2024-12/NNAG%20MS%20optimal%20pathway%202024.pdf\u003c/span\u003e\u003cspan address=\"https://www.mssociety.org.uk/sites/default/files/2024-12/NNAG%20MS%20optimal%20pathway%202024.pdf\" targettype=\"URL\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"},{"header":"Tables","content":"\u003cp\u003eTable 1 is available in the Supplementary Files section.\u003c/p\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":true,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"bmc-neurology","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"nurl","sideBox":"Learn more about [BMC Neurology](http://bmcneurol.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/nurl","title":"BMC Neurology","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"Multiple Sclerosis, Specialised services, Disease Modifying therapies, Care coordination","lastPublishedDoi":"10.21203/rs.3.rs-7924929/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-7924929/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003e\u003cstrong\u003eBackground\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eSince 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.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eMethods\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eWe 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.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eResults\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eWe surveyed 12 healthcare professionals, developing four case studies. \u003cstrong\u003eService A \u003c/strong\u003ewas the most well-resourced team (24.1\u003cstrong\u003e \u003c/strong\u003eFull 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. \u0026nbsp;In \u003cstrong\u003eService B\u003c/strong\u003e (7.2 FTE/ 2100 patients), patients travel from district general hospitals (DGH) to the specialist centre. In \u003cstrong\u003eService C\u003c/strong\u003e (5.3 FTE/ 950 patients), the MS team were located within the DGH and networked to a neuroscience centre. In \u003cstrong\u003eService D\u003c/strong\u003e(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.\u003c/p\u003e\n\u003cp\u003eAcross 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.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConclusion\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eRespondents 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.\u003c/p\u003e","manuscriptTitle":"Implementing Disease Modifying Therapies in Neurodegenerative Diseases: Lessons From a Survey of Multiple Sclerosis Specialist Services Across England","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-12-09 09:50:45","doi":"10.21203/rs.3.rs-7924929/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"editorInvitedReview","content":"","date":"2026-01-11T16:33:40+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"131157072805835087958958415870957354927","date":"2026-01-01T19:03:24+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-12-24T17:58:18+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"106401990382236580067876179136963142032","date":"2025-12-23T17:05:31+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2025-12-23T10:14:14+00:00","index":"","fulltext":""},{"type":"editorInvited","content":"","date":"2025-11-12T08:49:18+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2025-11-12T08:48:36+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2025-11-10T20:35:58+00:00","index":"","fulltext":""},{"type":"submitted","content":"BMC Neurology","date":"2025-11-10T20:33:03+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"bmc-neurology","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"nurl","sideBox":"Learn more about [BMC Neurology](http://bmcneurol.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/nurl","title":"BMC Neurology","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"0734f4a8-6b9f-4f87-bf09-8f2008090974","owner":[],"postedDate":"December 9th, 2025","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"under-review","subjectAreas":[],"tags":[],"updatedAt":"2025-12-23T10:23:27+00:00","versionOfRecord":[],"versionCreatedAt":"2025-12-09 09:50:45","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-7924929","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-7924929","identity":"rs-7924929","version":["v1"]},"buildId":"8U1c8b4HqxoKbykW_rLl7","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}