Please complete our trigeminal neuralgia survey
TNA UK’s new trigeminal neuralgia survey is now open, and every response matters.
Please complete the survey
This survey has been created to build a clearer and more credible picture of what life with trigeminal neuralgia and facial pain is really like. Too often, the reality of this condition is missed. Diagnosis can take too long. Pain can be mistaken for dental problems. Treatment may be delayed. The daily and emotional impact can be far greater than many people realise.
Our last survey received more than 570 responses, and that evidence helped us better understand the patient journey. It also strengthened the case we make on behalf of patients and families. This new survey goes further. It has been designed to gather stronger, more useful evidence so that TNA UK can keep pushing for better understanding, better support, better research and better care.
Why this trigeminal neuralgia survey matters
I designed this survey to reflect the real experiences of people living with trigeminal neuralgia and facial pain, while also gathering the evidence that funders, researchers and decision-makers need to see.
That matters because lived experience alone is too often overlooked unless it is backed by clear, structured evidence. This trigeminal neuralgia survey helps turn experience into knowledge that can be used. It helps us show what patients go through, where systems fall short, and what needs to change.
The survey is not just about symptoms. It is about the full reality of living with this condition. It looks at diagnosis, pain, treatment, daily life, emotional wellbeing and support. As a result, the findings will be more useful for research, future planning, funding applications, awareness work and service development.
What the trigeminal neuralgia survey asks
The trigeminal neuralgia survey asks questions in several important areas.
First, it asks a few background questions, such as age, sex and where people live. These questions help us understand who is responding and whether any patterns appear across different groups or locations.
Next, it asks about diagnosis. It looks at how long the diagnosis took, who first provided help, whether the pain was first thought to be dental, and how many professionals were seen before answers were given. These questions matter because delay and misdiagnosis remain a serious part of many people’s experience.
The survey also asks about pain itself. It explores how the pain feels, how severe it is, how often attacks happen, how long they last, whether pain continues between attacks, and what may trigger it. This matters because trigeminal neuralgia and facial pain do not affect everyone in exactly the same way.
Another section looks at the impact on everyday life. It covers eating, drinking, speaking, brushing teeth, washing the face, sleeping, working, socialising, concentration, relationships and leaving the house. Severe facial pain is not only a medical issue. It can affect almost every part of daily life.
There are also questions about treatment and support. These include medication, procedures, work, access to help, and what people believe TNA UK should prioritise. This helps us understand what is helping, what is missing, and what people need most.
Finally, the survey includes open questions. These ask what has been hardest, what doctors should understand better, what would have helped earlier, and what support would make the biggest difference now. Those answers are especially important because they allow people to speak in their own words.
Why your response matters
Every completed trigeminal neuralgia survey adds strength to the evidence.
Whether diagnosis came quickly or after years of uncertainty, whether pain comes in sudden attacks or stays in the background every day, whether someone is newly diagnosed or has lived with this condition for many years, each response has value. No experience is too small. No journey is unimportant.
The more people who complete the survey, the stronger and more credible the findings become. That evidence helps TNA UK speak with greater authority, support future research, strengthen funding bids, guide services and push for better care.
Responses from outside the UK are welcome too. Although TNA UK is a UK charity, trigeminal neuralgia and facial pain affect people around the world. International responses will help broaden understanding of the condition and the patient experience.
Please complete the trigeminal neuralgia survey
The survey takes around 8 to 12 minutes to complete. All responses are anonymous. If you choose to take part in a follow-up study, your email address will be collected separately at the end.
If completing the survey yourself is difficult, a family member, friend or carer can complete it on your behalf.
Please take part if you can. By completing this trigeminal neuralgia survey, you will help TNA UK build stronger evidence and make a stronger case for change.
Complete the survey here:
https://www.surveymonkey.com/r/KRF79GQ
Aneeta Prem
CEO, TNA UK