Raising the Bar for MS: Looking to the future


The aim of Raising the Bar for MS as a national initiative has always been to raise the bar for the whole MS community.

‘To improve MS services for all people with MS and their families, and make delivering these services for all involved a rich and rewarding experience.’

Throughout this year’s conference, one theme came back to us time and again. That was the wider importance of wellbeing both amongst people with MS, and amongst healthcare professionals in the MS community.

Caroline Clarke summed it up beautifully when she 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.’

Caroline Clarke

Why we need this shift

We heard how essential this shift in the healthcare landscape is as the audit and data workstream outlined the unsustainable working situation within neurology. Sharing that the average caseload for an MS service is 1,757 people with MS, they estimated that there was a national shortfall of over 100 neurologists, 200 nurses and 100 coordinators.

In terms of the effect this is having on healthcare professionals, the audit shared that the majority of respondents were ‘struggling to cope’ with their current caseload, or that they ‘compromised on the quality of care they’d like to deliver’.

This has a significant implication for the health of our workforce and the likelihood of burnout, something Dr Brian Marien shared on day 2 as a very real health problem within the medical workforce. He talked about mental resilience and the need to both develop it in ourselves, and model it to our peers and trainees.

Highlighting that social learning is five times more effective than independent learning, his suggestion to model this resilience was echoed by Gabriele De Luca as he talked about leading in a crisis.

‘Occupying a leadership position is not the same as leading: you need to see how you think and act, and how that affects others.’

Prof Gabriele De Luca

The two discussed the ways that the way we lead can model new behaviours to those around us, suggesting that ‘when you walk the talk that imparts a set of skills.’

A focus for understanding and a vehicle for change

Brian also talked about the wider need for wellness, sharing a quote:

‘The doctor of the future will give no medicine but will interest his patients in the care of the human frame, in diet and in the cause and prevention of disease.’

Thomas Edison

This particular theme was shared by numerous speakers throughout the conference, both as a focus for understanding and a vehicle for change. The need to provide holistic care remains important; yet the need to address wider social determinants of health and people’s personal investment in their own health and wellness, as is being explored by SDoH and Healthy lifestyle workstreams, is with a view to better engaging with individuals are their own ability to manage their conditions. There is a need for us to switch our focus, from cure to prevention. From reactivity to proactivity.

‘Give a sense of optimism and improvement that patients can have a role in their wellbeing and they can definitely affect their outcomes.’

Caroline Clarke

We know that there are many mechanisms, apps, resources and support available for those with MS who are keen to make lifestyle and behavioural changes to improve their outcomes, and we heard from Agne Straukiene and George Pepper as to why signposting individualised information is so important.

Engaging those who are less aware of the impact their own choices can make is more difficult, and this is where there is a need for healthcare professionals to be talking about, and sharing information on, the things people with MS can do for themselves to feel better and to live a better life.

The HLS workstream survey, and discussions following the SDoH presentation suggest that we are struggling to make this transition through lack of time, lack of information to confidently share, or a lack of understanding about who’s role it is to support the patient in their journey towards self-management and self-monitoring.

Collaborative care

Encouraging people to take an active role in their own treatment is just one side of the ‘live your best life’ coin, of course. Delivering timely and tailored medical treatment and models of care are essential if we are to slow down the progression of MS, and maximise brain health as a core goal.

On day 1, Raising the Bar heard from Carolyn Young, Emma Tallantyre and

Karen Vernon as they shared evolutions in their services, and promoted new ways of working, whilst being frank about the challenges too. Emma looked at virtual diagnosis and relapse management, and Carolyn discussed managing later stages of MS remotely. Both were clear on the limitations of digital consultation, and the need to work harder to meet individual needs, but were also positive about the breadth of investigations and care possible, sharing the assessment tools that can work well virtually.

Karen described the way of working her MS team is operating to address challenges in caseload management, administrative burden and delivering the right care to the right people at the right time. She described the new service, providing telephone clinics and following up with face to face appointments for those who need them as ‘3 years of modernisation in 3 months’, which has ‘fixed what was broken’ in the service, improved safety monitoring, and reduced A&E visits due to the weekend and out-of-hours availability, amongst other benefits.

Access to the latest disease-modifying treatment is an important part of optimised care and Wallace Brownlee gave a short symposium talk on siponimod for SPMS now that NICE has licensed it for use.

On day 3, Saúl Reyes gave a clear overview on the importance of maintaining up-to-date vaccinations for people with MS and was clear that there is no evidence of correlation between vaccines and disease progression. David Baker spoke eloquently about COVID-19 and vaccine readiness, noting that whilst anti-CD20’s may impact a response to the forthcoming vaccine, the likelihood of people with MS having a positive response to the vaccine was strong.

The future starts here

There can be difficulty demonstrating the worth of addressing the wider health and wellness of people with MS, despite the growing evidence in favour of it. However, new and existing forms of data on MS could provide a solution to this.

On day 2, Rod Middleton from the MS Register shared the breadth of meaningful data able to be analysed from across 17,530 contactable via email and 4,751 people inputting data into the website. The real world evidence being gathered presents incredible opportunities to understand people’s experiences and needs, and to create meaningful solutions. Examples include the instantly mobilised project assessing the impact of COVID-19 on the MS community presented by Richard Nicholas and the Optimise:MS study set to assess 5 year’s worth of DMT data, as well as the new pregnancy register led by Ruth Dobson which seeks to understand how we can support women in pregnancy from planning to post-partum.

The Register’s data, when used alongside other forms of data and tools, could enable a much more expansive picture of current experiences, services, or populations. For example, using some of their data on comorbidities management alongside the new data dashboard developed by the Audit and data workstream, Agne Straukiene was able to paint a detailed picture of the care and cost implications of comorbidities in people with MS.

‘More comorbidities in MS leads to more emergency admissions and longer length of stay. In the case of diabetes, almost double the stay and cost.’

Dr Agne Straukiene

The time constraints felt by healthcare professionals in routinely discussing wellness may be alleviated by MS101, the online education programme being launched by shift.ms in January 2021.

‘The programme will improve effective self-management and self-monitoring, promote positive lifestyle changes, support people in optimising their engagement with healthcare professionals, and reduce impact of health inequalities.’

George Pepper, CEO shift.ms

By giving people with MS the information and tools they need to better manage their own MS with confidence, this should also reduce some of the strain on MS services.

Further down the line, the Leader’s Academy cohort have a vision for a digital solution to complement and support current services with their proposal of MSUnite. In responding to the question, ‘What bold measures should the NHS take to minimise emergency admissions for people with MS?’ their research led them to envision a digital platform enabling ‘everything in one place‘. From information and support to access to services and at-home tests, virtual appointments, buddying systems, patient records and more.

Caroline Clarke’s top 5 things that a well informed person expects from their MS service (fig 1) also assist in reducing burden on services, thus reducing the strain placed on individuals providing that service. Addressing these five things should also make services more cohesive and more enjoyable to deliver.

To condense the opening quote, ‘Shifting from a sickness service to a health and wellness service… is one of the only ways we’re going to get out of our current predicament.’

The shift has begun in the MS community. Please join us in continuing on this journey.

The 3 year plan – where are we?

We set out a three year vision early in the programme. Here’s a top line of where we are with that:

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.