‘The Forgotten Many’ reports on significant service gaps for people with secondary progressive MS

A new report has been released today which shines a light on the significant gaps that currently exist across the NHS in Secondary Progressive Multiple Sclerosis (SPMS) policy, service provision and patient care.

Developed by Wilmington Healthcare and funded by Novartis, the report, ‘The Forgotten Many: A 2020 Vision for Secondary Progressive Multiple Sclerosis’, has been endorsed by MS Academy and leading MS patient and professional groups.

‘The Forgotten Many’ 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.

From an MS Academy perspective, one of the main recommendations which focuses on workforce and professional practice, states:

‘Education in MS and SPMS is needed for a range of professionals and services because delays in diagnosis of MS are often brought about by lack of knowledge among non-specialist staff managing people with MS.’

MS Academy is providing a range of education and training to equip existing and new specialists in MS care through its many training programmes.

Professor Gavin Giovannoni, Professor of Neurology, Blizard Institute, Barts and the London School of Medicine and Dentistry, Queen Mary University of London and Academic Director of MS Academy stated:

“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, and commissioners, as well as the entire MS community. It highlights the need to think differently, work differently and to now reconnect with the forgotten many. No patient with secondary progressive MS should be left behind.”

Jamie McGregor, Head of Policy, Intelligence and Operations at MS Academy and one of the experts interviewed for the report, stated:

“Not only does MS Academy provide educational programmes, our mentorship and leadership support to delegates spearheads service transformation – a unique feature of this innovative programme.

We will be focussing on addressing the inequalities identified for SPMS in our future work programmes to help support service change.’’

For more information, read the press release, or the full report.

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