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Disease insight reports

The Forgotten Many: A 2020 Vision for Secondary Progressive Multiple Sclerosis

This report has been developed by Wilmington Healthcare and funded by Novartis, with endorsement from leading MS patient and professional groups, to help shine a light on the significant gaps that currently exist across the NHS in Secondary Progressive Multiple Sclerosis (SPMS) policy, service provision and patient care.

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The report, ‘The Forgotten Many: A 2020 Vision for Secondary Progressive Multiple Sclerosis’ demonstrates the urgent need to address these gaps and puts forward a number of recommendations, identified by a group of leading experts in the area, that would help to transform the delivery of SPMS care, and the outcomes experienced for those living with the disease.

In addition to this, it sets out for the first time the number of people likely to be affected by SPMS at a local Clinical Commissioning Group (CCG), Health Board and Health and Social Care (HSC) Trust level.

The report highlights the following recommendations to achieve the above aims:

Urgent concerns:

  • Find the ‘Forgotten Many’: Understand the scale of the SPMS population and use a population management approach to address quality and value.
  • Develop guidance for SPMS diagnosis: Explicit guidance for SPMS would aid prompt diagnosis and help integrate psychological support.
  • Establish and integrated care pathway for all patients: A national agreed SPMS integrated pathway should be developed in consultation with patients and a wide range of professionals.
  • Use data to better understand patient need: To undertake the urgent concerns above and address other priorities we must use data to better understand patient need.

Major priorities:

  • Communication to people with MS: Care must be centred on positive communication with patients and access to the right psychological support.
  • Workforce capacity and professional practice: Services urgently need to understand and address capacity issues to ensure people with SPMS receive care and the professionals involved receive specific training to manage patients.
  • Establish care planning and annual reviews: Ensure all patients access care planning and an annual review. In order to do this the exactly what constitutes a care plan must be clearly defined.
  • Focus on outcomes: Agree on the outcomes that services for people with SPMS should focus on.
  • Clinical audit to highlight variations in care: Clinical audit of services is essential at a national level to identify and address variations in care.

“This report touches on the many facets of managing SPMS and the forgotten many and how we need to find them and offer them a holistic service to improve their quality of life, improve their neurological outcomes and at the same time reduce unnecessary and preventable utilisation of healthcare services. This report is a call to arms for parliamentarians, policy makers, NHS Providers, commissioners as well as the MS community to think differently, work differently and to now reconnect with the forgotten many. No patient with secondary progressive MS should be left behind.”
Professor Gavin Giovannoni, Professor of Neurology, Blizard Institute, Barts and the London School of Medicine and Dentistry, Queen Mary University of London

“In the research for this report it has been very apparent that people with SPMS are frequently discharged from regular neurological follow-up despite the fact that management of MS-related comorbidities and lifestyle interventions can improve MS outcomes. There is simply not the capacity in neurology services currently to manage this group of patients without services working differently. For the first time this report highlights the total numbers of people living with MS which should reinforce the need for improved strategic planning and commissioning of services for people with SPMS. Armed with this information we hope this will stimulate a re-think for future service provision”
Sue Thomas, Chief Executive, Commissioning Excellence, Wilmington Healthcare Consulting, London

Download the report

Download the full report and explore the gaps that currently exist across the NHS in Secondary Progressive Multiple Sclerosis policy, service provision and patient care.