A fresh approach to supporting people to live well with MS

Written by: Coleen Kelly, Self Management Lead, Multiple Sclerosis Society Scotland (MS)

Coleen shares some learning from the past year to develop their approach to supporting self management.

It has been a busy year for us here at the MS Society. With the start of a new year upon us, it feels like a good opportunity to reflect upon the self management development work we’ve carried out in 2017. We decided to review and re-design our offer after delivering the Stanford model of self-management courses for over 10 years.  This was prompted by people living with MS telling us the course no longer met their needs. We have now trialled and launched a new way of working which is flexible and built upon peer sharing and experiences.  This fresh approach has allowed us to engage with a new audience and work more dynamically.

Where we started in 2017

Between February and June we carried out a pilot to test our Living Well with MS face-to-face course. This pilot was the start of our new approach to self-management support, where we are building a flexible conversation around peers sharing their stories and experiences to help them to live well with MS. We delivered 5 two week courses across 5 different Integrated Joint Boards and learned a huge amount from the process and the evaluation results.  We also trialled an online peer network to give people the opportunity to stay in touch after the course.

What we learned from the pilot

  1. Most people who attended were newly diagnosed

The results of the pilot showed that the majority of people coming to our course were newly diagnosed with MS.  This means they have received a diagnosis in the last 5 years.  This helped us to identify a need for this kind of peer support for recently diagnosed people.

  1. Those who needed it the most gained the most

We used the Patient Activation Measure (PAM) to evaluate the journey of attendees on the course (pre, post and 3 month follow-up).  PAM is a validated measure which identifies how confident, knowledgeable and skilled someone feels in relation to managing their own health and care. We found that those who were identified as being least ‘activated’ through their PAM score benefitted the most from attending.  This means that those who felt the least knowledgeable, confident and skilled at managing their own health before attending the course experienced the biggest increase in these areas after taking part.

  1. Using technology helped people to stay in touch

77% of people who attend a course signed up to use the online peer network. This has given people the opportunity to stay in touch with others across Scotland who have taken part in one of our face-to-face courses. People can use the peer network to create or add to discussions on different themes. They can also send private messages to other users. We’ve found that hosting live web chats is particularly popular.  These last for an hour and the topic is chosen by people using the network. It’s been a really effective way of engaging people and supporting them to share their experiences about the things that are impacting their life.

Plans for 2018

Combining technology and peer support has helped us to engage with a completely new audience this year:  those who are newly diagnosed with MS.  We are now planning ahead for 2018 where we want to further build on using technology and peer sharing to extend our reach and continue to support those who are at the beginning of their journey with MS.  We are extremely excited about what next year has in store for us and we are committed to supporting people to live well with MS.


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Multiple Sclerosis Society Scotland (MS)