It was a privilege to be asked to write the foreword to a new policy document, “The Forgotten Many: A 2020 Vision for Secondary Progressive Multiple Sclerosis” dealing with more advanced MS. If you get a chance please read the document.
The ‘forgotten many’ is how people with secondary progressive or advanced multiple sclerosis (SPMS) describe themselves. SPMS has a significant impact on those with the disease, their families, the NHS and society overall.
The lack of efficacy of many of the licensed treatments for the relapsing forms of MS has left people with SPMS with the impression they have a second, different, untreatable disease. Telling someone they have SPMS is not too dissimilar to telling someone they have a terminal illness. For this reason, many healthcare professionals steer away from having this awkward conversation. For those people on a Disease-Modifying Therapy (DMT) for relapsing MS, disease progression conjures up fear that a diagnosis of SPMS will mean them having to stop their treatment.
A further issue is that many people with SPMS are discharged from regular neurological follow-up to local community-based services and their general practitioners to manage any problems. This is despite emerging evidence that aggressive management of MS-related comorbidities and lifestyle interventions can improve MS outcomes. So many people with progressive MS are smouldering away in the community thinking they have an untreatable, but relentlessly progressive disease.
A new report challenges this assumption and makes the case for actively managing and treating people with SPMS. However, to do this there is an urgent need to expand MS services and to develop new MS centres to accommodate these forgotten patients.
The emergence of treatments to treat and modify the course of progressive MS will require a retooling of MS centres and services; an increase in MS neurologists and specialist nurses, more dedicated MRI time for monitoring patients and additional ancillary services to address the massive unmet need associated with patients who have greater disabilities and associated comorbidities.
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.