Workstream B: Patients as partners – Get involved

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.

Objective:

To support people with MS to understand and take control of their condition and how they manage it.

Overview of the workstream

The workstream reviewed the considerable evidence that unwanted variance in MS care is driven by a number of factors including delays in diagnosis, lack of specialist MS nurses and neurologists, as well as stretched MS teams. People living with progressive MS continue to get the worst deal.

There was complete consensus that ‘engaged patients do better’. Emphasis is increasingly moving away from a physician-led system where patients rely on the information and advice they are given, to a therapeutic alliance where patients are involved in decision making because they are experts in their own condition. However, while some MSers have the skills, knowledge and confidence to engage in their healthcare, many others are more passive, and may expect everything to be done for them. The group discussed that the key window of opportunity for patient engagement is just after diagnosis and should be used to signpost new MSers to the relevant resources and to educate on how to make best use of the services available.

Our goal for the year ahead:

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

The course will cover issues such as:

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

Key steps in the process

As noted in the 3 year plan, by the end of year 2 (31^st July 2021), we would expect pilot centres to have tested a nationally-developed patient partner programme to upskill people with MS on how to navigate their local MS services and how to self-monitor and self-manage their MS.

Timings will be dependent on the scope of the programme and the funding. Ideal timeframes are shown in figure 2.

More information:

• Read the background to this workstream
• View the timeline for how this fits into the bigger picture this year
• Find out about the other workstream’s goals
• 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.
• Find out about the other workstream’s goals
• Listen to this presentation:

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