February 2025
This weekend, I attended the 2025 BACP Student Conference ‘Bridging The Gap’, focused on new mental health professionals and where their new found careers may take them. The lecture that resonated most with me was by Dr. Beverley Costa, entitled “What can I do beyond the therapy room? Harnessing therapeutic training in social action projects – introducing the Social Response Cycle.” Her talk bridged the gap between my two passions: advocating for the rare disease community and providing therapy to those affected by rare conditions.
She introduced the Social Response Cycle, a concept that emphasises the dual roles of therapists and mental health professionals in society. The cycle consists of two key elements: reaction and action. The reaction involves responding to the needs of individuals, such as through therapy, by helping them navigate and heal from their personal struggles. The action is about using the insights gained in therapy to address broader societal issues and create proactive change. This involves taking steps to identify and address unmet needs in the community before individuals reach crisis points that require therapeutic intervention. By blending both action and reaction, therapists can contribute to creating a more supportive and resilient society.
Her words made me realise that I had already identified a gap in my community—the lack of support for those affected by rare diseases, other medical diseases or becoming a carer. My journey began with advocating for rare disease patients, driven by my son’s genetic disorder and becoming a parent carer myself. Over the years, I’ve expanded my efforts by running the PTEN UK and Ireland Patient Group and serving on multiple PPIE boards as a patient advocate, working to influence policy and medical practice.
In addition to my advocacy work, I am proud to be a co-author of Positively Rare, a powerful collection of stories from 25 authors who share their personal journeys with rare diseases. In my chapter, I reflect on the profound impact my son’s diagnosis had on my mental health and how it ultimately led me to a new profession in counselling. The emotional toll of navigating the rare disease world opened my eyes to the importance of resilience and mental health, inspiring me to establish a patient group and later pursue psychotherapy training. Through this chapter, I hope to share how even the most difficult journeys can lead to personal growth and offer hope to others facing similar challenges.
This advocacy work and my personal experiences led me to psychotherapy, where I aim to support those affected by rare diseases—not just at a societal level, but on an individual, therapeutic one. Here, the ‘reaction’ of therapy comes into play, providing the support these individuals need.
Through the Social Response Cycle, I can now clearly see how my personal experience, passion, and qualifications complement each other. I’m excited about where this integrated career path will take me, as both aspects work together to serve the rare disease community.
The Social Response Cycle
Another lecture that deeply resonated with me was Myira Khan’s keynote speech, Legacy in Action: My Journey in Counselling, Entrepreneurship, and Purposeful Legacy Building. Myira spoke about how her 15-year career had not followed a clear map or plan. She simply followed her path with integrity and authenticity, and now, looking back, she has built a thriving career in diversity and Muslim counselling. Her legacy is still evolving, and she continues to build it with purpose.
This idea of creating a legacy without a rigid plan struck a chord with me. I feel the same way in my journey with rare disease advocacy. Like Myira, I’ve been driven by passion and authenticity, and while my path has not always been clear, I’ve continued to build upon my experiences. I didn’t set out with a plan to shift from patient advocacy to therapy, but it has emerged as a natural next step in my ongoing commitment to those affected by rare diseases. I have been intentional in my ‘actions’ by addressing the broader, societal needs of the rare community whilst also now being able to ‘react’ and help those that are struggling on a daily basis. Just like Myira, I am still building my legacy, and I look forward to seeing where this journey takes me.
If you are affected by a rare disease, medical diagnosis or autism, or you have become a carer to someone who is, then please do get in touch. I would love to help you on your journey.
