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’ve run consultations with patients and healthcare professionals to decide that our Supported Self-management Programme should:

  • 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

Support for your patients in Northern Ireland, England, and Wales

Thanks to funding from the National Lottery Community Fund Northern Ireland, we’re working with healthcare professionals in Northern Ireland to develop and pilot two courses of 6 online supported self-management sessions. We’ll support people living with axial SpA to understand more about their condition, meet others who can relate, and build a supportive community.

We’re also very grateful for funding from National Lottery Community Fund Wales. We’re developing and piloting a series of three online self-management sessions and one face-to-face meetup to bring people with axial SpA in Wales together. We’re aiming to enable attendees to learn practical ways to manage their symptoms and the impact axial SpA has on their life. Learn more and order free postcards to invite your newly patients (diagnosed within roughly the last three years).

We’re undertaking work to support people in England who are newly diagnosed with axial SpA. Thanks to the National Lottery Community Fund, we will run online education and peer support sessions and provide personalised and bespoke information. We expect to support 400 people recently diagnosed. Learn more and order free postcards to invite your newly diagnosed patients (diagnosed within roughly the last three years).

With thanks to National Lottery Community Fund

Signpost your patients to Your SpAce

Our dream is that every person newly diagnosed with axial SpA is signposted to Your SpAce for the information and support they need. 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. Order a free pack of promotional materials to easily signpost your patients. A promo pack contains A4 posters for clinics and postcards with QR codes that you can hand to patients.

Co-produced by healthcare professionals and people living with axial SpA, Your SpAce is a credible resource you can easily signpost patients to. Our short videos and downloadable resources support people to build practical skills around:

  • Managing pain
  • Coping with flares
  • Managing fatigue
  • Making medication decisions
  • Getting the most out of appointments

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 23 online peer support meetups with over 710 attendees.

We have shared results from the programme in:

My AS, My Life Live-streamed Webinars and video library

For more in-depth expert information, we run regular webinars live-streamed across social media. Signpost your patients to our My AS, My Life homepage so they can access a whole library of videos supporting them to manage their axial SpA and the impact it has on their life.

Since April 2020, we have run 130 Live-streamed Webinars and had over 437,000 views.

Online self-management sessions in partnership with NHS rheumatology teams

Since January 2021, we have run 63 online self-management sessions in partnership with 53 rheumatology teams and reached 1640 people living with axial SpA. We’ve shared 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

Future plans

We are currently:

  • Looking to create a final Your SpAce module on activity and exercise
  • 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 Programme Manager.

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.

Resources for your patients

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