TNA UK New Year Message 2026

Support, Progress and Hope

Dear Friends and Members,

I hope you are well and that you had a wonderful Christmas. As we step into the New Year, I am looking forward to continuing our work together, strengthening the support so many people rely on and pushing for change where it is most needed. In this TNA UK New Year message, I want to share what we have achieved together and where we are heading next.

Trigeminal neuralgia (TN) and severe facial pain do not follow neat timelines. Pain can be unpredictable, exhausting and isolating. Too many people are still sent in circles before anyone names what is happening. That is why this year mattered so much for TNA UK.

Turning Silence into Evidence

Over the past year, 570 adults living with TN and related facial pain completed the TNA UK Patient Experience Survey. It is one of the largest pieces of work of its kind in this field.

The survey confirms that:

diagnosis is often delayed
dental misunderstandings are common
isolation is widespread
the impact on mental health is profound

As a result, this evidence now informs our contact with clinicians, commissioners and policymakers. It allows us to advocate with confidence, grounded in lived experience rather than anecdote.

Please note that data from the TNA UK Patient Experience Survey may not be used or referenced externally without written permission from the charity.

Support You Can Reach

Our freephone helpline is a service that we know has, in some cases, helped to save lives.
0800 999 1899 (option 1)

The helpline is run by volunteers with lived experience of TN or facial pain, or who care for someone who does. These volunteers give their time to listen, encourage and support people who may be in real distress. Although the helpline does not replace clinical care, it provides a lifeline at moments of fear, exhaustion and confusion. Because this is not a 24-hour service, we ask callers to be considerate. Volunteers are sharing their time around their own health and family responsibilities.

In addition to the helpline, the Friendship Line and Regional Support Groups give people different ways to reach us in the way that feels safest for them.

Friendship Line

The Friendship Line offers a regular weekly or fortnightly call from a trained volunteer for people who feel lonely, vulnerable or isolated. For many, this gentle, regular contact makes a real difference.

Regional Support Groups

Regional Support Groups meet online and in person several times a year, often quarterly. They give people the chance to share experiences and practical ideas with others who understand TN and facial pain. Again and again, people tell us that these services remind them they are not alone.

Pain, Loneliness and Connection

Pain and loneliness are a difficult combination. Many people withdraw because they are anxious about triggering pain in public or tired of explaining what TN means. Winter can intensify this. Cold air and wind can trigger pain and keep people inside for long periods.

For that reason, we treated loneliness as a central issue in 2025. We increased online options, widened attendance formats and made sure contact points were regular. In short, connection is not an optional extra. It is a vital part of support.

Practical Help and Benefits Guidance

We also improved support for people navigating benefits and disability assessments. A focused webinar and clearer written guidance helped members prepare for Personal Independence Payment (PIP) and Attendance Allowance.

Our aim is simple. No one should feel unable to explain the impact of TN or facial pain. While we cannot promise outcomes, we can help people present their situation with clarity and dignity.

Cardiff 2025: A Flagship Moment

On 16 July 2025, we held our first national conference in central Cardiff. Tickets sold out in advance and more than 120 people attended.

The programme included sessions on:

neurosurgery
oral medicine
pain management
maxillofacial care

The patient panel, which I chaired, created a space for lived experience to sit alongside clinical expertise. For many people, it was the first time they felt understood in a room with specialists. For me, it was a privilege to meet so many of you in person and online.

Making Trigeminal Neuralgia Visible

During 2025, more people saw trigeminal neuralgia than ever before.

Through the Face of TN portraits and the Show TN 3 Fingers gesture, we continued to build a clear visual identity for facial pain. Our campaign films linked to these activities have now been viewed more than 125,000 times across our digital channels. As a result, people who might otherwise feel invisible have a simple way to explain TN, and many go on to contact the helpline, visit the website or join groups and webinars.

NHS Guidance in Plain English

We also explained the NHS specialised neurology standards for trigeminal neuralgia in clear language. These standards include expectations around assessment, imaging where appropriate and multidisciplinary review.

In addition, we set out the direction of the Government’s 10-Year Health Plan and how shifts towards community-based care may affect access to treatment and support. This work is not an abstract policy. Instead, it is about equipping people to ask the right questions and challenge being “sent in circles”.

A Personal Reflection

What I remember most from 2025 are the quieter moments as much as the headline events. There were the messages after a webinar saying “I finally feel understood”, the relief in a voice on the helpline and the determination in support groups to keep going despite pain and setbacks. It is a privilege to be trusted with these experiences and to carry them into conversations with clinicians, policymakers and funders.

One story from this year, shared with her family’s permission, has given many of us hope. Grace, a young member and fundraiser, underwent major surgery to relieve her trigeminal neuralgia. The early days after the operation were tough, but she is now home and has been able to touch her face, eat, drink and talk without TN pain. Her family have asked me to pass on their thanks for the messages of support sent by the TNA UK community. They meant a great deal to Grace and to all of them.

Thank You

None of this work happens in isolation. It depends on the effort, kindness and resilience of many people.

First, thank you to our helpline and Friendship Line volunteers, who give their time and emotional energy to support others. Thank you also to our Regional Support Group Leads, who hold spaces where people can speak openly and honestly about life with TN and facial pain.

I am grateful to our trustees, fundraisers and donors for their commitment to TNA UK and for trusting us with their time and resources. In addition, I want to thank the clinicians on our Medical Advisory Board for their guidance and clarity. Their input helps us keep our information responsible, accurate and clinically grounded.

Finally, thank you to Heather Morris, our Finance and Office Manager, for supporting the charity and our members with efficiency, kindness and professionalism throughout the year.

The Year Ahead

Our priorities for 2026 are clear. TNA UK will:

press for earlier diagnosis
work to reduce avoidable dental harms
protect and strengthen free support services, including the helpline, Friendship Line and Regional Support Groups
expand practical guidance on benefits and on explaining TN and facial pain in clinical and everyday settings
support responsible research where lived experience shapes the questions being asked

Ultimately, every decision will be guided by one question. Does this improve life for people living with trigeminal neuralgia and for the families who stand alongside them?

Volunteer with TNA UK in 2026

Your voice brings hope. You do not need medical experience, only empathy, patience and reliability.

Roles include:

Helpline and email support
Be a reassuring voice for people who feel overwhelmed.
- Answer calls or emails during agreed hours
- Use our guidance and safeguarding procedures
- Direct people to reliable information and support
- Show compassion, confidentiality and calm at all times
Regional Support Leads
Create a connection and a community where you live.
- Host in-person or online meetups every two to three months
- Welcome new members and share local information
- Encourage mutual support between patients and families
Fundraising Ambassadors
Turn awareness into action.
- Help promote fundraising activities
- Share donation links online or in your community
- Inspire others by telling your story

If you have another skill that you think could help TNA UK, please let us know when you get in touch.

What We Offer

Induction and training
Helpline and safeguarding support
A supportive volunteer community
Skills that strengthen your CV
The chance to transform lives

Volunteering is flexible. Even two hours a month can make a meaningful difference.

If You Need Support

📞 TNA UK Support Helpline: 0800 999 1899
📩 Email: [email protected]

Happy New Year and, as ever, with my very best wishes,

Aneeta