Supported Self-management Programme

Living with axial SpA is what happens between medical appointments

Our Supported Self-management Programme gives people with axial SpA the skills and tools they need to confidently manage their symptoms and live well with the condition.

In partnership with patients and healthcare professionals

We ran a consultation with patients and healthcare professionals, which identified the key programme objectives:

• Empower people with axial SpA to live well with their condition
• Connect patients with their local rheumatology team
• Reduce isolation
• Be co-designed with people living with axial SpA and healthcare professionals
• Be easily accessible
• Leave a legacy

Online self-management sessions in partnership with NHS rheumatology teams

Since January 2021, we have run 60 online self-management sessions in partnership with 48 rheumatology teams and reached 1606 people living with axial SpA.

We have shared some of the results in:

• A recorded abstract presentation at BRITSpA Annual Scientific Meeting 2021
• An article in OT News in March 2022
• A poster showcase presentation at BSR 2022 Conference. The British Society for Rheumatology awarded Zoë Clark the Chris Moran award for Best Poster at the Annual Conference 2022, reflecting both presentation and quality
• An industry briefing at BSR 2023 Conference

My AS, My Life Live-streamed Webinars

We run regular webinars live-streamed across social media to give people with axial SpA:

• Up to date information about axial SpA
• Practical tips on managing their axial SpA and the impact it has on their life
• Access in real-time to experts in rheumatology and axial SpA
• A welcoming online community

Since April 2020, we have run 126 Live-streamed Webinars and had over 402,000 views.

Signpost your patients to our My AS, My Life homepage so they can access recordings and extra resources.

Your SpAce

Your SpAce enables people living with axial SpA to engage with their condition, learn more about axial SpA, and build skills to manage the impact it has on their life. Co-produced by healthcare professionals and people living with axial SpA, Your SpAce is a credible resource you can easily signpost patients to. We cover pain, flares, fatigue, and making medication decisions.

It provides a much-needed community for people who are at the start of their axial SpA journey or who are struggling and feeling isolated. Since April 2023, we have run 16 online peer support meetups with over 450 attendees.

Order a free pack of promotional materials to easily signpost your patients to Your SpAce. A promo pack contains A4 posters for clinics and postcards with QR codes that you can hand to patients.

Future plans

We are currently:

• Planning our 2024-25 self-management programme
• Seeking funding to create a resource library for healthcare professionals to run their own education sessions with our resources and guidance

Get involved

If you would like to be involved in future consultations regarding the programme, please contact Zoë Clark our Senior Self-management Programme Officer.

If you would like to share any information, knowledge or research updates with our community, please contact Zoë to learn more about running a My AS, My Life live.