'Living well with MS' : the new merged workstream in Raising the Bar


Working in the MS community, there are many different ways to support someone with MS to live their best life, and medication and rapid access to treatment options are amongst them. However, there is increasing evidence that we need to look at a broader range of factors - lifestyle, work, social connectedness, background, experiences and sense of purpose. All of these things impact on a person's ability to live well with MS.

The necessity of a whole-person, life-wide approach to health was highlighted at the Raising the Bar event last year. Guest speaker Caroline Clarke, CEO of the Royal Free London NHS Foundation Trust, Trustee of Overcoming MS, who herself lives with MS, said:

‘The NHS is trying to turn itself from a sickness service to a health and wellness service… the demand for services is so insatiable and so great that we can’t manage it and we have to do something different. Helping patients help themselves is one of the only ways we’re going to get out of our current predicament.’

'Raising the Bar for MS' identified several areas for focus when it began in 2018, each of which became a workstream. In 2019, we saw two of the work-streams with similar priorities combine to maximise their reach and effectiveness. The audit and data workstreams merged together and accomplished a great deal last year, from a national service audit to development of a digital data dashboard.

At the start of 2021, the core leaders of the two other workstreams, 'healthy lifestyle' and 'social determinants of health' made the decision to merge into one to address the health of the whole person: 'Living well with MS'.

Each of the existing areas of work within each workstream will still continue, but the remit will broaden where appropriate to reflect the wider agenda of the group.

For example, the online wellness tool is being designed for people with MS to ensure healthy lifestyle practices and self-management are built into the core care pathway for MS, from diagnosis onwards. This will now also feature questions and information pertaining to social determinants of health as well.

Dr Agne Straukiene, co-lead of 'Living Well with MS' workstream said:

'We would like to start focusing on longevity medicine, a branch of precision medicine that is specifically focused on promoting healthspan and lifespan.

Using AI powered tools such as deep aging clocks, clinicians should be able to more precisely assess and monitor individual health risks and and tailor appropriate interventions or changes in lifestyle for a specific person.'

Dr Agne Straukiene

Consultant Neurologist, Torbay and South Devon NHS Foundation Trust

Addressing health inequalities is a key focus within the new report, 'NHS Reset and Reform: a new direction for health and care in multiple sclerosis'. Talking about this, Gavin Giovannoni, Professor of Neurology, Blizard Institute, Barts and the London School of Medicine and Dentistry, said,

'Health inequalities or variation in MS services is a big factor that we need to address. I think the COVID-19 pandemic has highlighted this - not only in MS services but in healthcare in general. This needs to be a core feature going forward.'

Prof Gavin Giovannoni

Professor of Neurology, Barts and The London School of Medicine and Dentistry

This year, following the results of the surveys around the inclusion of lifestyle, wellness and social determinants in daily practice, and the requested direction of the workstream at the 'Raising the Bar' event in Autumn 2020, the Living well with MS' workstream plan to:

  1. Develop a range of resources for people with MS based around the themes of nutrition, movement, sleep and stress and depression, social determinants of health - that healthcare professionals working with them can use for signposting and support.

  2. Develop an online wellness tool, initially in the form of a patient-facing questionnaire, for people to complete pre-clinic and to open up discussions about their health and wellness and social aspects more generally in MS clinics.
    1. The ultimate aim is for this questionnaire to be developed into an online wellness tool which can provide information and support directly to the person with MS in line with their responses.

  3. Scope and map the wellness and social support services available around the country as an information-gathering exercise, to map variance, and open up understanding of the plethora of resources for specialist services to signpost into.

  4. Pilot the Disease-modifying lifestyle clinic model around the country based on the resources available online for use and use this as an example of good practice

  5. Increase awareness and understanding amongst healthcare professionals of the role of social determinants in affecting health outcomes, including sharing resources such as Shift.MS's MS and Work resources from a project examining work as a health outcome.

  6. Use the #ThinkSocial campaign to better understand how we can help to tackle the SDoH - and chronic stress - as a means of improving MS outcomes.

  7. Embed education and training for healthcare professionals in social determinants of health and lifestyle factors to increase confidence and understanding, through MS Academy webinars and MasterClasses.

  8. Champion ‘MS agents for change’ to implement change in their local MS populations.

  9. Work with other workstreams such as patients as partners, the MS register, and Data and Audit workstream, to gather evidence and data to support a clear policy direction for lifestyle medicine and the importance of addressing social determinants of health to optimise MS management.

  10. Establish a unique web-based platform that links most of the ‘Raising the bar’ workstreams, ‘all on one digital platform'; working with developers and artificial intelligence to develop management solutions.

Encouraging excellence, developing leaders, inspiring change

MS Academy was established five years ago and in that time has accomplished a huge amount. The six different levels of specialist MS training are dedicated to case-based learning and practical application of cutting edge research. Home to national programme Raising the Bar and the fantastic workstream content it is producing, this is an exciting Academy to belong to.