Creating my best odds to thrive

• Written by: Caroline Brocklehurst — Patient Representative & Peer Support Lead
• Published: 30th June 2025

Self Management Network Scotland member Caroline Brocklehurst tells us what she needs to take the lead in managing her health.

Being the leading partner in managing my health

Being supported as the lead partner in the management of my health gives me the best odds to thrive. I am not substituting my clinical care, but enhancing the partnership, to ensure my healthcare is tailored to my individual needs and circumstances. All patient journeys are unique, requiring bespoke strategies that evolve over time. Supported self management isn’t solely about managing conditions – it’s about improving my overall health and life in ways that matter to me as a person first, and a patient second.

The impact of chronic conditions

I was diagnosed with an incurable inflammatory bowel disease called Crohn’s Disease in 2009, followed by a correlating incurable spinal condition called Ankylosing Spondylitis (Axial Spondyloarthritis) in 2019, and in-between these diagnoses suffered illness involving debilitating neurological, cognitive, and psychiatric challenges. These conditions all profoundly affect my health, career, finances, relationships, and mental wellbeing. My dual role as both a patient and patient representative within health has been transformative. My lived, learnt and practiced experience has enabled me to represent patient voice in co-designing health strategies, advising on clinical guidelines, standards, education and research and has given me a sense of purpose, and also an enhanced awareness of the available strategies, tools and resources to be the lead partner in my health.

What do I need to lead?

There are four key pillars facilitating me to be the leading partner of my health:

1. Education and symptom management tools

Education in understanding my conditions and treatments is as important as the treatments themselves. Access to trusted information and tools from a variety of sources to support areas such as my medication monitoring, home aids, flare toolkits, and more, have been crucial. These resources support me in meaningful informed shared decision-making in my care and empowered symptom management. 

2. Lifestyle management strategies

Being able to access targeted and relevant tools to improve my “secondary symptoms” such as stress and sleep management, diet, fatigue management and exercise, creates the environment for me to achieve and maintain remission. Life and health are inevitably intertwined and interdependent.

3. Disease progression and complication prevention

I employ specialised strategies, supported by therapy-led services such as Physio and Occupational Therapy to prevent complications, arising from my treatments and conditions. Knowing when and how to access specialist clinical intervention in disease flare ups is also vital, both for slowing my disease progression and preserving my quality of life.

4. Peer support

Peer support plays a central role in my self management. Engaging with others who share similar experiences fosters connection, hope, and empowerment. Participating in and facilitating Peer Support groups has offered me shared learning opportunities, allowing me to make sense of my journey and to navigate it with greater clarity.

What healthcare needs to enable patients to lead:

• Tailored supported self management, which fosters meaningful interactions, promoting respect and inclusion.
• To embrace vulnerability and bravery in co-designing self management services which prioritise individuals over systems.
• Respect, recognition and resourcing of effective linked supported self management services.
• To empower patients to take an active role in their health, facilitating true shared decision-making, and meaningfully valuing lived experience throughout service design.
• To focus on patient-reported outcomes that reflect both the true impact on individuals’ disease journeys, but also their wider health and lives.

Continuous learning, empowerment and resources for patients, clinicians and policymakers are essential, for patients to be the leading partners in the management of their health. There’s a lot at stake, but there is also no greater stakeholder in my own health than me.

Caroline is an active member of the Self Management Network Scotland and Scotland’s Women’s Health Plan Stakeholder Group; a Peer Support Facilitator and Research Strategy and Funding Committee member with Crohn’s & Colitis UK; a Peer Support contributor for the Scottish Recovery Network; a Lived Experience Representative with the National Axial Spondyloarthritis Society (NASS), IBD UK and the British Society of Gastroenterology (BSG); and a Public Advisor with Health Data Research UK (HDR UK) and the NIHR Bioresource.

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