Raising the Bar for MS – your essential update: December 2019

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

MS Service Provision in the UK 2020

We want to keep the momentum going. Therefore, we need to ensure that those issues raised and discussed are addressed, to create a greater service for people with MS. So – we’re currently planning the follow-up meeting for 2020!

4, 10 & 11 November 2020


‘Those of us in the room have the power we need to fundamentally improve the quality of MS care in the UK, reduce variation and offer consistent care at the level we want everywhere, in the next 3 years’.

85% of 120 healthcare professionals in attendance agreed

What has happened since we met in July?

In July, we shared our three year plan with you, based on your comments and thoughts back in November 2018, and we all collectively painted a picture of what successful action would look like in each of the five workstreams this year.

Data and audit have merged to reflect the overlap between them.

  • 33 Trusts have sourced and provided their Blueteq data,
  • 19 have completed the audit questionnaire.

The initial questionnaire has been revamped based on your feedback. It gathers more specific and meaningful data – it will provide more usable data; data that will make a difference and lead to a change. Early findings to be reported in the new year. Fill yours out now!

Social determinants of health (SDoH) have developed an audit questionnaire to map the SDoH across populations in pilot sites across the UK. The questionnaire will be circulated in the new year and deadline for involvement is March 2020.

Wellness and lifestyle:

  • have established a short survey, which will be circulated in the new year
  • are recruiting a steering group to develop a patient-facing questionnaire on wellness and lifestyle-related elements - please register your interest
  • are recruiting pilot sites to trial use of these questionnaires in clinic.

What you can do – the quick summary

Data and audit:

Social determinants of health:

  • Sign up to be a pilot site and participate in the development of an SDoH report
  • Complete the questionnaire when it is circulated in the new year

Wellness and lifestyle:

  • Join the steering group and develop a patient-facing q'aire for wellness
  • Sign up to be a pilot site
  • Complete the survey when it is circulated in the new year

Data and Audit

These two workstreams have been merged due to the significant overlap between them. Led by Professor Jeremy Hobart and Dr David Rog, they underpin much of our ability to make lasting change in the most effective way possible.

So far:

  1. 100% of the professionals at the audit workstream session in July agreed to participate in a rolling audit, and agreed to a simple strategy (fig 1)
  2. 33 trusts have sourced and provided their Blueteq data. Our handy crib sheet can help you do this too.
  3. 19 services have completed the audit questionnaire – and based on initial feedback the questionnaire has been revamped to make the data it gathers more meaningful and help us all to use it more effectively.
  4. A report is set to publish in the new year with initial findings. This will shape our next steps.
  5. Trusts are starting to link their Blueteq data with their local data to make it more usable (fig 2)
  6. Dashboard discussions are in the pipeline… watch this space! [...]

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Social determinants of health

The social determinants of health (SDoH) are life-enhancing resources. Their distribution across populations effectively determines length and quality of life. It is critical that we address these elements if we are to ‘raise the bar’ for everyone with MS, irrespective of their background, circumstances, education or income.

Our starting point is to gather the information we need from pilot sites and submit it for publication, sharing it as widely as possible.

We are asking every participating site to report on:

  1. whether they have a comprehensive register of their patients,
  2. an estimate of prevalence for their population;
  3. whether they have access to some surrogates for the SES of their patients;
  4. whether they are screening their patients for some key SDoH;
  5. whether their patients have access to social prescribing.

The report will be produced in March 2020, and participation will take just a few minutes [...]

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Wellbeing and lifestyle

The need to look at a wider picture of a person’s health, wellness and lifestyle, including nutrition, movement, sleep and stress, is becoming more widely accepted. Stress has been found to trigger relapse in MS (Mohr: 2004), and evidence around moving more and eating non-processed, natural food linked to improved mental and physical health across a range of conditions (list a few inc SMILES 2017, Neurology Academy: 2019).

This workstream wants to both:

  • understand current practice relating to wellness and lifestyle through a baseline audit,
  • begin to change future practice by encouraging a holistic review of patients within regular existing clinics

We would like to understand what most MS Centres routinely do for wellness and lifestyle so we can see the baseline we’re working from and know how best to target activity for the workstream.

Please can you answer 5 super-quick questions to give us a picture of your centre’s practices? [...]

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Patients as partners

Shift.ms lead this workstream with their community of people living with MS, or MSers as they term themselves, sharing and supporting the development of a model that gives people with MS the tools, information and confidence they need to live their best life with MS, from treatments to activities, across work life and home life.

Shift.ms are in the process of putting a funding proposal together to support development of this workstream which envisages an online tool and will therefore require a software team to bring it to fruition [...]

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The Leadership MasterClass

The applicants for the first Leadership MasterClass, taking place in February 2020, have been selected. The nine successful delegates will attend their first retreat on 19th February for a three-day retreat, covering ‘leading in a VUCA world’, ‘leading self’, and ‘leading others’.

When asked how this course on change leadership is different to any other leadership course, Barbara Hoese said:

‘All leadership is about change; leading towards something, creating something new or different.’

Barbara has created the course alongside Professor Gabriele De Luca for MS Academy as an enabler to achieve the vision to ‘raise the bar’ for MS [...]

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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.