BRIDGING THE CARE GAP: OUR COMMITMENT TO ADVOCACY, AWARENESS, AND EDUCATION
Last year, our hearts guided every step we took at TWINS for iPouch & Stoma Patients Ltd. We set out to do more than support patients with stoma and ipouch care; we wanted to change lives. From the first quiet conversations with patients at their homes or over video calls, to late-night brainstorms about how to amplify their voices in the wider healthcare world, our journey has been fuelled by compassion, curiosity, and the unwavering belief that every person deserves to be seen, heard, and understood.
We launched the first of what would become a steady rhythm of TWINS webinars, one every four to eight weeks, and some of them also co-hosted with industry partners who share our vision for better stoma and ipouch care. In those sessions, we always began by centring patient voices. We dove into the nutritional challenges of ostomates and people with an ipouch, and explored in detail potential complications and their prevention and management. Attendance steadily climbed as word spread and patients logged in from across the UK and the World, asking questions in real time and staying on afterwards to share their own experiences. Each webinar reinforced something vital: when we bring practitioners, patients and partners together in honest dialogue, the gaps in care become impossible to ignore.
Our first awareness day, and the walk we organised through London’s Westminster parks, set the tone for everything that followed. On 7th October 2024, we started at Westminster Bridge under crisp autumn skies, and after a few hours of walking around, we reached Buckingham Palace and then back to Westminster Bridge. That day did more than raise awareness; it built community, gave our daily campaigns fresh stories to tell, and reminded us that visibility is the first step toward real change.
We also committed to daily social media campaigns designed to bring real life into the online world. Beginning in October 2024, every day, our channels have featured an “Awareness for iPouch & Stoma Patients” post. Our industry sponsors have always supported us by liking and reposting our posts, helping us reach thousands more people each month and ensuring these stories stay front and centre. These posts span across our website, as well as all major social media platforms - TikTok, Threads, YouTube, Facebook, Instagram, X (Twitter), LinkedIn. We have 45,000 views per month across all online media. These are also steadily increasing each month, helping us raise awareness for those who have an ipouch or stoma.
In early 2025, we poured our souls into a poster for the British Journal of Nursing Conference. We revisited patient stories, those who could have potentially slipped quietly through the cracks after discharge, those whose emotional needs went unspoken, and those who called us at dawn. We wove these experiences with data on follow-up disparities and regional inequities, and gently proposed solutions. When our poster was accepted, we felt the same rush of pride you get when someone finally listens to a story you have carried close to your heart.
Building on that momentum, we were also asked to write an article for the British Journal of Nursing. We revisited every line until it reflected both our clinical rigour and our empathy. We mapped out the unique struggles patients face, but we also shared words our patients spoke aloud, relief, frustration, and hope, to remind readers that behind every statistic stands a person rebuilding their life. Publishing that piece felt like handing our patients a powerful megaphone, one that could carry their truths from the bedside to boardrooms, shaping policy.
We also found ourselves on the virtual stage of the Gastrointestinal Nursing Webinar. We did not just lecture; we invited our audience into a conversation. We laid out the same core messages, addressing follow-up disparities, blending clinical and emotional support, and harnessing telehealth to keep patients connected.
Now, as we prepare for our next webinar and plan our next October awareness walk, we see how these initiatives feed into our research, our publications and our advocacy. Every hashtag, every webinar log-in and every shared photograph strengthens the case we bring to conferences and articles: that stoma and ipouch care must be continuous, compassionate and co-created with the people who live it. And so, we carry on, one webinar at a time, one social post each day, one step on London’s paths, because every voice raised in awareness brings us closer to the world our patients deserve.
Looking back over these milestones, we see more than accolades; we see lives touched, anxieties eased, and a chorus of voices finally finding resonance. Our poster, article and webinar were not ends in themselves but stepping stones toward a future where every ipouch and stoma patient feels genuinely supported. As we begin our second year, we remain unwavering in our promise: to advocate relentlessly for every stoma and ipouch patient, to raise awareness of gaps in care, and to deliver compassionate education that empowers patients, families and fellow professionals alike.
To learn more about all the work we do to raise awareness around stoma and ipouch patients, please visit our website pages at:
1. https://www.ipouch-stoma-twins.com/awareness
