Overview

This assignment will be fulfilled at 30 hours per week across Monday-Thursday. The successful applicant will be required to visit the charity's Twickenham office at a minimum of once per week.

Fowler's Syndrome UK (FSUK) is the only charity in the world dedicated to women (and afab) with Fowler's Syndrome or Chronic Idiopathic Urinary Retention; a life-changing and poorly understood bladder condition that causes full or partial urinary retention. The CEO is excited to welcome a proactive, purpose-driven, and resourceful Communications and Engagement Lead to join their small and purposeful team and support the next phase in their journey.

In this multi-faceted role, you will ensure that women affected by Fowler's Syndrome, clinicians, researchers, and the wider public are intimately connected to the charity's work. You will enable smoother pathways for women seeking support and for healthcare professionals looking to access educational resources, while also leading on a range of communications activities and awareness campaigns.

You will take responsibility for coordinating and facilitating online patient groups, supporting in-person events, and helping to manage FSUK's Patient Council. Tasked with overseeing the development of content such as patient resources, you will also advance wider engagement across projects and research programmes and ensure that communications, whether via newsletters, social channels, or the website, reflect the charity's voice and values.

While having strategic oversight and leading on the management of FSUK's digital platforms, including their WordPress website and database consisting of patients and supporters, you will also maintain the charity's fundraising pages. Through managing FSUK's social platforms, you will at times also interact with the charity's online community, responding with empathy as you engage and signpost to appropriate services such as the FSUK helpline, ensuring people feel heard, informed, and supported.

Lastly, raising awareness of FSUK will be one strand of the communications output, however the primary focus is to enable stronger connections and deepen engagement and trust with their valued community.

Emotional intelligence and well defined interpersonal skills are essential, as well as having proficient organisational ability and the aptitude to multi-task when working independently within this small, yet fast-moving team.

A background in patient, community, or stakeholder engagement will also be a valuable asset, alongside exposure to working within the health, charity, or research sector. You will have demonstrable experience producing content, alongside a track record of managing digital and social platforms (particularly Instagram).

Lived experience of Fowler's Syndrome is not essential but would be a welcome bonus!

If you're eager to play a vital role in nurturing FSUK's patient community, enhancing the digital presence of a growing charity that ensures women living with Fowler's Syndrome feel supported and connected, we'd love to hear from you.

Fowler's Syndrome UK welcomes applications from people of all backgrounds and especially anyone with lived experience of FS. We actively encourage interest from racially and culturally minoritised individuals, those who are neurodivergent, part of the LGBTQIA+ community, or living with a disability.

Please get in touch if you would like to talk to us about any support that you may need in completing an application.

Responsibilities

• Coordinate and facilitate online patient groups; support in-person events; help manage FSUK's Patient Council.
• Oversee development of content (e.g., patient resources) and advance engagement across projects and research programmes; ensure communications reflect the charity's voice and values.
• Provide strategic oversight of FSUK's digital platforms (WordPress site and patient/supporter database) and maintain fundraising pages.
• Manage FSUK's social platforms; engage with the online community with empathy and signpost to services such as the FSUK helpline.
• Lead on awareness-raising activities while focusing on deeper engagement and trust with the community.
• Demonstrate emotional intelligence, strong interpersonal skills, and the ability to multitask in a small, fast-moving team.
• Background in patient, community, or stakeholder engagement; experience in health, charity, or research sectors is valuable.
• Proven ability to produce content and manage digital and social platforms (particularly Instagram).
• Lived experience of Fowler's Syndrome is optional but welcomed.

Qualifications

• Strong written and verbal communication skills; ability to translate complex topics for patients, clinicians, and the public.
• Experience in content creation and managing digital communications channels.
• Empathy, responsiveness, and ability to signpost to appropriate support services.
• Freedom to work with autonomy within a small team; dependable and well-organised with excellent multi-tasking capabilities.

Fowler's Syndrome UK welcomes applications from people of all backgrounds and especially anyone with lived experience of FS. We actively encourage interest from racially and culturally minoritised individuals, those who are neurodivergent, part of the LGBTQIA+ community, or living with a disability.