IBD Care is reactive and focused on a bio medical model, leaving people struggling with pain, fatigue, anxiety, extraintestinal manifestations and other issues related to their Crohn’s or Colitis. This means they are unable to manage and live well with their condition.

The idea

Crohn's & Colitis UK, working in partnership with the The Scottish Government Modernising Patient Pathways Programme IBD work stream, used the results of a UK-wide scoping exercise on self-management and the resulting Position Statement, to inform a piece of co-design work in Scotland.

An externally facilitated multi-stakeholder co-design workshop was held in Perth in May 2018 which led to the development of two distinct ideas for self-management tools; a ‘Flare Card’ based on a model already developed in NHS Greater Glasgow and Clyde and a Personalised Care Plan.

The Flare Card

• 25 participants attended the workshop, including Primary and Secondary Care professionals and IBD patients.
• Participants used a co-design process to ensure that the flare card was patient-centred and would enable people to self-manage their condition when clinically appropriate.
• Participants agreed the content of the flare cards, including symptom information, possible side-effects of treatment, and details of how to access additional help or advice.
• Following the initial workshop, clinicians from multiple health boards provided additional comments and Crohn’s & Colitis UK facilitated additional patient focus groups, both of which helped inform the design and content of the final version.

The Personalised Care Plan

Co-designed to help people with IBD prepare for their clinical appointments. The Care Plan gives prompts and questions, supporting people to focus on what matters most to them, and to assist clinicians to initiate conversations about aspects of daily living, including mental wellbeing.

The development of the Care Plan has so far included:

• An initial draft written to ensure prompts make sense and are easy to understand.
• Further refinement incorporating feedback from those involved in it`s co-design and from the Crohn's & Colitis UK Readers Panel.
• Forming a multi-stakeholder Steering Group, with representation from Healthcare Professionals and patients from across Scotland, to further refine and sign off the content. The group is also developing the process flow for a paper-based care plan which will allow IBD services in Health Boards to insert local information and contact details, alongside a digitised version of the care plan.

The Results

Winner of The Alliance Self-Management Resource of the Year Award 2020 the Flare Card, which helps patients to recognise symptoms of a flare, know what they can do themselves and signposts them to appropriate support, is now available to all IBD Services across Scotland.

The intention is for both tools to be used by IBD services in conjunction with the Crohn’s & Colitis UK Patient Pack and accredited information. This package will support people with Crohn's and Colitis to self-manage their condition at diagnosis and beyond, offering a more person-centred approach to their care, and ongoing condition management.

While this support aspects of a Supported Self-Management Programme, it is not sufficient.

There is currently no consistent and cohesive approach to supporting people with IBD with self-management, which includes good quality support and information given at the right time. As well as, emotional and psychological support.

Crohn's & Colitis UK, in a continuing partnership with the Modernising Patient Pathways Programme, has developed a Project Plan to integrate these tools, identify what further resources and support are needed. With the final step being to bring everything together to deliver a structured Supported Self-Management Programme for IBD, and embed this into clinical practice.

The project will begin in 2 pilot sites for eventual scale up across Scotland.

By embedding the use of The Flare Card and Personalised Care Plan within a structured Supported Self-Management Programme and overall approach to care, all IBD Services in Scotland will recognise people with IBD as partners in their care and be able to meet their holistic and changing needs over time.

Date created: April 2021