Why is it important?
When people with IBD are empowered to take more control of their condition, they live fuller, freer lives.
This idea of ‘self-management’ stands for all the actions taken by people to recognise, treat and manage their own health – independently or in partnership with the healthcare system. It includes the management of IBD symptoms and treatment, but importantly, it also includes managing symptoms that might indicate an extra-intestinal manifestation, such as arthritis, as well as a person’s emotional and psychological wellbeing.
Supporting self-management is an essential part of providing truly holistic, person-centred care. It’s also closely aligned to the major UK policy drive of supporting people living with long-term conditions to manage their conditions at home or in the community, where appropriate, for example through social prescribing.
'Patient activation’ describes the knowledge, skills and confidence a person has in managing their own health and care. Evidence shows that when people are supported to become more activated, they benefit from better health outcomes, improved experiences of care and fewer unplanned care admissions.
A core component of self-management is information, as this helps ensure that people with IBD understand their condition and can manage everyday symptoms. The majority (64%) of adults with IBD responding to the IBD Patient Survey agreed that they had the information and skills to confidently manage everyday symptoms and live as well as possible. While this is positive, focus needs to now be placed on understanding why 17% disagreed and what information or support services these individuals require in order to feel confident to manage their symptoms.
One area of opportunity is the creation of structured self-management programmes, as is often offered to people living with other chronic conditions like diabetes and cancer—and as is recommended by the 2024 IBD UK National Report. We know that his is an area of need, as the majority of services reported in the 2023 Service Self-Assessment that a group education programme for IBD was not available (73%).