As we welcome 2025, I reflect on the past year with pride in what we have accomplished together and gratitude for the strength of our TNA UK community. Despite the significant challenges of 2024, including the ongoing cost-of-living crisis and increasing demands on our services, we have grown stronger, more connected, and more determined to support every person living with trigeminal neuralgia and facial pain (TNFP).Through your trust and engagement, we have made real progress in reducing isolation, challenging misinformation, and advocating for meaningful change.
2024: A Year of Impact
Connection and Support
Regional Support Groups (RSGs): Visiting RSG meetings across the UK was a humbling experience. I saw first-hand how these RSG meetings provide vital lifelines, offering members a space to share, connect, and find solace in understanding. Whether online or face-to-face, RSGs remain at the heart of our mission to combat isolation.
National Webinars: Our webinars brought world-class experts directly to members, addressing pressing concerns and providing clear, practical advice. These events, shaped by the thoughtful questions you raised, have become an invaluable resource for the TNFP community.
Listening and Learning from You
TNFP Survey: With over 570 responses, our largest-ever member survey provided a comprehensive picture of the challenges you face, from long waiting times to the emotional toll of living with TNFP. These insights are shaping our priorities, ensuring our actions are rooted in your experiences and needs.
Critical Support Services
Helpline and Friendship Line: The rising number of calls to our helpline and Friendship Line underscores their importance. Members have told us how these services offer hope and compassion during their most difficult times. One member shared, “Having someone from TNA call me once a week has given me a reason to keep going”.
Addressing Financial Hardship: The cost-of-living crisis has placed additional strain on many lives. Through initiatives like “Donate a Membership,” we’ve ensured that no one is left without access to the support they need.
Advocacy and Representation
Policy Engagement: By meeting with MPs and ministers, we’ve shone a light on the postcode lottery affecting TNFP treatment and called for reforms to Personal Independence Payments (PIP).
Our Voice: My role as a Trustee of The Neurological Alliance has strengthened our advocacy, enabling us to push for TNFP to be recognised as a priority in national healthcare policy.
Partnering with Professionals
Educational Outreach: Tailored resources distributed to neurologists, pain specialists, and GPs have improved understanding of TNFP, ensuring more patients receive timely and accurate care.
Medical Advisory Board: Dr Giorgio Lambru and Mr Sinan Barazi continue to guide our medical efforts with their expertise, helping us address systemic gaps in care and push for better outcomes for members.
Sustaining Financial Stability
Grants and Donations: A significant national grant allowed us to expand essential services, while QR codes simplified donations, encouraging more members and supporters to contribute.
Legacy Giving: Families who participated in legacy giving shared how this process brought a renewed sense of purpose, knowing their contributions will leave a lasting impact.
Empowering Volunteers and Staff
Volunteer Training: Comprehensive training has prepared our helpline staff, RSG leaders, and Friendship Line volunteers to provide compassionate, effective support.
New Roles for Growth: The addition of a Volunteer and Fundraising Officer has strengthened grassroots engagement, ensuring we continue to grow and meet demand.
Moving Into 2025: A Time for New Resolutions
As we step into the new year, many of us are thinking about resolutions. Perhaps you’re giving up chocolate, alcohol, or something else to stay healthy. Why not take it one step further and consider donating the money you save to support TNA UK? Your contribution could directly help someone living with the challenges of trigeminal neuralgia or facial pain.
Another resolution to consider might be giving your time. Could you spare a few hours to volunteer with us? Whether it’s supporting others on the helpline, leading a regional support group, fundraising, or offering a particular skill, your involvement would make a huge difference.
If this resonates with you, we’d love to hear from you. Together, we can create a stronger, more connected community for everyone affected by TNFP.
Together, We Move Forward
As we step into 2025, let’s continue to build on the progress we’ve made. Whether you volunteer, join a support group, or share your story, your involvement strengthens our community and helps us move closer to a future where no one feels unsupported or unheard.
Let’s make this year one of health, happiness, and meaningful progress.
Wishing you and your loved ones a healthy and happy 2025.
Warm regards,
Aneeta
Aneeta Prem MBE JP
CEO, Trigeminal Neuralgia Association UK
