Written evidence submitted by MS Society response
Multiple sclerosis (MS) is the most common disabling neurological condition affecting young adults. More than 130,000 people in the UK have MS, the equivalent of one in every 500 people.
MS can be relentless, painful and exhausting. It’s a condition which damages nerves in your body, making it harder to do everyday things like walk, talk, eat and think. Symptoms can fluctuate, making life unpredictable. They can include loss of balance, stiffness, spasms, speech problems, fatigue, pain, bladder and bowel, and vision problems.
About MS Society
The MS Society is the UK’s largest charity for people living with multiple sclerosis. We’re here for everyone living with MS – to provide practical help today, and the hope of a cure tomorrow. We fund world-leading research, share the latest information and campaign for everyone's rights. Together we are a community and together we can stop MS. We let people with MS know they’re not alone, and offer advice and support to help them manage their symptoms.
In May 2022, NHS England (NHSE) confirmed that delegation of approximately 65 specialised services from NHSE to Integrated Care Systems (ICSs) will begin in April 2023. Specialised adult neurology services are one of the 65 to be delegated. This service supports people with a wide range of rare and complex conditions, including some MS treatments.
We recognise the multiple opportunities for change offered by ICSs. In particular, we strongly welcome the opportunity to deal with issues around disjointed pathways and to deliver care in the place where it is most appropriate and beneficial to the patient. We maintain the majority of MS care does not need to take place in regional specialised centres, with the exception of neurosurgery and complicated neurological procedures such as stem cell therapy.
A sufficiently resourced neurology system within ICSs would be a major step towards embedding prevention and reducing inequalities between local populations. Access to services and treatments, such as MS disease modifying treatments (DMTs), closer to home can lessen the need for acute management interventions such as hospitalisation or neuro-rehabilitation, as well as decrease future costs to services and society as a consequence of disability progression. Research by the MS Trust and Wilmington Healthcare has previously found that better resourced and coordinated community care has the potential for massive savings through avoided emergency hospital admissions. They found that emergency admissions for bladder and bowel related issues for people with MS cost £10.4m in 2015/16. Total emergency hospital admission costs for people with MS that year cost NHS England over £46 million.
Many services for people affected by neurological conditions, including much of neurology, neurosurgery, neurophysiology and specialised rehabilitation will now be commissioned at an ICS level. This is particularly important for people with MS who are not eligible for DMTs, such as some people with progressive MS, who can require more support due to their level of disability and the deterioration of their health over time. They are also more likely to disengage with services and would benefit from local, community based support that minimises the need to travel.
People with MS should have access to a formalised multidisciplinary team (MDT) that includes professionals across specialist teams. According to NICE, core members of an MDT for patients with MS not treatable with DMTs include: physiotherapist, occupational therapist, wheelchair clinic, speech and language therapists, continence advisor, pain clinician, podiatrist, optometrist, psychologist, tissue viability practitioner, respiratory practitioner and palliative care/ end of life practitioner.
With so many different providers delivering these services, it is important that members of MDTs have formal ways of interacting to coordinate the care for a patient. We hope to see recruitment incentives across ICSs to enable effective networking across providers, allowing neurologists in smaller centres to prescribe and provide DMTs, in an multi-disciplinary team within a regional centre (‘hub and spoke’ model).
To help effectively enable coordinated care at ICS level, neurology patients and patient groups must be consulted on an assurance and oversight framework. ICBs, relevant NHSE bodies and specialised commissioning must assess and, where necessary, strengthen patient, carers’ and VCSE groups’ formal involvement and voice at place and system levels. This will best ensure that quality and safety of care are at the heart of ICB priorities.
The neurology workforce are facing several challenges. Adjusted for the population, France and Germany have over 7 neurologists for every 2 that the UK has. Furthermore, the UK ranks 44 out of 45 European nations for the number of neurologists for each person with a neurological condition.
A recent survey by the Neurological Alliance highlighted major delays to accessing neurologists across a range of conditions, including MS. Over half of respondents with MS (55%) experienced delays to a routine neurologist appointment in the past 12 months, with 49% reporting delays to a routine appointment with a specialist MS nurse.
For MS services, we are concerned that access to life-changing treatments such as DMTs could be at risk if the infrastructure and workforce required to provide, manage and monitor patients on such treatments are inadequately funded by ICBs.
While responsibility for commissioning certain specialised services will be delegated to ICBs, they will be required to commission against service specifications and clinical policies which NHSE will continue to set. Service specifications define the standards of care expected from providers of specialised services. They are the key national standard relied on to protect services during delegation of specialised services.
Many service specifications have not been updated since 2013, including specialised adult neurology, and patently require revision. Updates are unlikely to happen quickly enough for defined standards to be protective of service quality when delegation occurs in April 2023, especially given the complex planning required in advance of that date.
We would welcome further information on plans and timelines for updating service specifications, and further assurances as to how quality and services will be protected in the gap between delegation of services and the update to the neurology service specification.
Looking ahead to enablers of successful ICSs, we support the recent recommendations from the Neurological Alliance, of which we are a member, for ensuring services for people with neurological conditions are protected from regional variation and inequality. In particular, we support their calls for:
We also support the Neurological Alliance’s call for governments across the UK to work together to establish a Neurological Taskforce, to coordinate relevant departments, health and social care bodies, professional bodies, people affected by neurological conditions and the voluntary sector to:
In addition to the above, we believe it is important that the service specification for specialised neurology is sufficiently robust to ensure that access to DMTs for MS is equitable across ICSs. NHSE’s 2021 Getting It Right the First Time (GIRFT) for neurology report has previously highlighted wide regional variation not only in ability to access DMTs, but in the type of DMT accessed across England. The GIRFT report found significant variation in the proportion of higher vs lower efficacy DMTs prescribed at different neuroscience centres in England, with prescribing of higher efficacy DMTs ranging from 28-68% between regions. Such differences cannot be fully explained by differences in neurology caseload.
Furthermore, recent research has found that deprivation, as measured by English Index of Multiple Deprivation (IMD), negatively influences access to DMTs for MS patients in England, with eligible patients in the most deprived IMD score quintile 31% less likely than others to receive a DMT.
As previously highlighted, although not all MS patients are eligible for DMT treatment, DMT provision offers objective insight into many of the key aspects of a neurology service – ability to achieve timely diagnosis of complex conditions like MS, along with infrastructure and caseload management to ensure a timely pathway from diagnosis to treatment. As such it speaks to the quality of a neurology service generally and is relevant to other neurological conditions beyond MS.
We would like to see a metric that monitors use of DMTs as part of the ICS dashboard for neurology (linked to the neurology service specification). Such a metric would allow ICSs to monitor existing variation in access to DMTs and support more consistent clinical decision-making. It would provide an opportunity for ICSs to compare performance, share best practice and explore opportunities to improve outcomes across the board for the populations that they serve.
A range of optimum pathways and guidance to improve neurology care have been developed by the National Neurosciences Advisory Group (NNAG). One such pathway is the MS optimum pathway.
The pathway outlines how people with MS should be referred directly to an MS specialist for confirmation of diagnosis and assessment for DMTs. We believe this pathway is well placed to support ICBs and ICPs in their goals to improve local population health.
The pathway recommends that relapse, disease progression, symptom management, palliative care and end of life care should be triaged through an MS administrative coordinator with knowledge of an MS service, with an MS nurse available to help manage a patient’s care plan. MS nurses and other allied healthcare professionals could also free up MS consultant neurologist time through prescribing and monitoring.
A core principle of this MS pathway is to keep as much care local as possible. Blood tests and routine monitoring should be done close to home. The pathway also emphasises the importance of having access to a specialist MS team and clinic with different health and care professionals working together throughout the patient journey. This is key for those eligible for DMT treatments and those not eligible, the latter of whom sometimes slip through the net of healthcare.
Barriers to successfully adopting the optimum pathway include workforce shortages of MS specialist neurologists, MS specialist neuro-radiologists, MS nurses, and MS service admin support. Funding extra administrative and care coordination posts for MS services in the first instance would go a long way to freeing up clinician’s time, reduce backlogs and ultimately save costs by avoiding unnecessary deterioration and emergency admissions.
Key enablers of the optimum pathway include specialist networking and use of virtual consultation where appropriate. Additionally, increased focus on data sharing between and across services, as well as with people with MS, would greatly facilitate communication between clinicians and improve patient care.
We believe this pathway is a good example of how service improvement priorities can align with the wider population health management issues being prioritised by ICSs. However, NNAG optimum pathways are yet to be officially endorsed and adopted. We hope this is something that will change with the development of ICSs.
Based on the evidence outlined in this submission, we have suggested questions for the committee to consider as part of the inquiry. These are:
a) Optimum neurology pathways were endorsed and adopted;
b) Neurology was a system priority, underpinned by the Neuro Taskforce;
c) National neurological quality drivers were assured?
 NHSE, 2022. Roadmap for integrating specialised services within Integrated Care Systems.
 Ms Trust and Wilmington Healthcare, 2015. Measuring the burden of hospitalisation in multiple sclerosis: A cross-sectional analysis of the English Hospital Episode Statistics database 2009-2014.
 Association of British Neurologists, 2020. UK Neurology Workforce Survey
 Neurological Alliance, 2022. Together for the 1 in 6: findings from My Neuro Survey in England.
 Neurological Alliance, 2022. Together for the 1 in 6: findings from My Neuro Survey in England.
 NHS England/GIRFT, 2021. Neurology: Programme National Specialty Report.
 Das, J., Rog, D. J., Middleton, R., Rodgers, J. W., Fry, R., & Nicholas, R. (2022). The association between deprivation and the access to disease modifying therapies for multiple sclerosis: An England wide community-based study in the UK MS Register. Multiple Sclerosis and Related Disorders, 57, 103474.
 National Neurological Advisory Group (2019). Optimum clinical pathway: Multiple sclerosis.