‘Supporting people with MS to understand and take control of their condition and how they manage it.’

Shift.ms are leading this workstream, with CEO George Pepper member of the ‘Raising the Bar’ steering group and Service designer Rob Sloan leading the workstream session.

Objective:

To develop an expert patient course designed by and for pwMS and to enable every MS centre in the UK to run it.

The course will cover issues such as:

  1. navigating the NHS when you have MS,
  2. understanding your MS service,
  3. self-monitoring,
  4. self-management and
  5. other initiatives for pwMS to help with the development and running of their MS services.

Why this workstream?

The landscape of health is shifting from a physician-led system with patients wholly reliant on the information and advice they are given, to a patient-physician partnership where patients have access to numerous information sources and are often experts in their own condition.

This shift, alongside the growing number of people living with one or more long term condition, is driving an empowerment agenda, a wish to encourage active participation of people in the type of treatment they receive, the lifestyle they adopt and the way they choose to manage their own condition.

One of the key break-out discussions at ‘the Way Forward’ was that of ensuring patients are equipped to be clear and equal partners in how they manage their MS. Key elements of the debate including how to encourage self-advocacy, the types of telehealth tools available to enable self-monitoring, the types and availability of expert patient courses. Georgina Carr, Head of Campaigns and External Relations shared evidence gathered from the MS Society recently in their online course ‘Living well with MS’ which covers four modules across self-management itself, fatigue, life balance and stress.

George Pepper, CEO of shift.MS, an online MS community, set the challenge to those at the event, saying that we need to ‘increase patient activation, promote self-advocacy, and leverage patient networks to demand change.’ This workstream seeks to meet that challenge.

What to expect

Shift.ms will outline the background to this workstream, including:

  • the need
  • the thinking behind the digital delivery,
  • the importance of the social elements,
  • the plans for developing this resource in 2019.

This workstream will be a practical, hands-on group with attendees:

  • Reviewing existing models of effective patient education for MS like ‘Living well with MS’, and for other conditions such as DAFNE, the online education tool for type 1 diabetes, and gathering learning to take into a similar MS programme
  • Agreeing the key elements of an expert MS course and developing the content
  • Creating a rollout plan so that every MS centre in the country is equipped and enabled to deliver this programme
  • Considering how to measure the success of the programme
  • Taking a leadership role in implementing the programme roll-out in their own locality

 

More information:

  • Listen to George’s presentation at ‘the Way Forward’ last year:
  • Read a short interview with George setting out why this workstream is so essential.
  • Read more about patient as partners George’s thoughts, and the discussions that prompted this workstream.
  • Find out more about the MS Society’s ‘Living well with MS’ online course and hear from those who have embraced self-management as a result of the course.

  

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