Research must start with the people living with the condition.
TNA UK is the established UK patient charity for people affected by trigeminal neuralgia and facial pain. We support patients, families and carers, while also bringing lived experience into research, trial awareness, professional education and future service improvement.
Our work is practical, trusted and already active.
Through our helpline, e-helpline, Regional Support Groups, befriending support, webinars, mailouts, membership, patient surveys and direct contact with families and carers, TNA UK hears what life with trigeminal neuralgia is really like.
We understand the fear of first symptoms, the confusion of dental pain, the delay before diagnosis, the difficulty of medication changes, the impact of side effects, the uncertainty around procedures and surgery, the isolation of severe facial pain, and the urgent need for better treatment options.
TNA UK welcomes ethical collaboration with researchers, clinicians, funders, pharmaceutical companies, biotechnology organisations and life-sciences partners where the work is transparent, properly governed and clearly benefits people affected by trigeminal neuralgia and facial pain.
TNA UK research and patient voice at a glance
TNA UK supports people affected by trigeminal neuralgia and facial pain through helpline support, e-helpline support, Regional Support Groups, befriending support, webinars, member communications, patient surveys, research engagement and professional education.
Our work includes:
over 400 people expressing interest following TNA UK’s engagement with the Neoma Libra trial;
more than 320 people attending the related patient webinar;
training for helpline volunteers and Regional Support Group leads on relevant research opportunities;
an original Patient Experience Survey with more than 570 responses, including 567 people consenting for anonymised use by TNA UK and researchers;
a latest TNA UK survey with more than 1,130 responses; and
a respected Medical Advisory Board supporting our information, education and research engagement work.
About trigeminal neuralgia
Trigeminal neuralgia, often called TN, is a severe facial pain condition affecting the trigeminal nerve.
The pain is often described as sudden, sharp, electric shock-like or stabbing. It may be triggered by everyday actions such as talking, eating, brushing teeth, washing the face, applying make-up, shaving, smiling, touching the face, or exposure to wind and cold air.
TN can affect eating, speaking, sleeping, working, relationships, confidence and mental health.
Many people affected by TN feel frightened, misunderstood or isolated, especially before they receive the right diagnosis and support.
TNA UK exists so that people affected by trigeminal neuralgia and facial pain are heard, informed, supported and taken seriously.
What TNA UK does
TNA UK is patient-led, independent and evidence-aware.
We provide information, support, education, signposting, research engagement and patient voice.
We do not diagnose, prescribe or provide individual medical advice. We help people understand the condition, prepare for appointments, ask better questions, access support and feel less alone.
Our work includes helpline support, e-helpline support, Regional Support Groups, befriending support, patient information, national webinars, member mailouts, research engagement, trial awareness, professional education, patient surveys, Medical Advisory Board input, awareness work and lived-experience insight.
This gives TNA UK a direct understanding of the patient journey, not only the clinical condition.
Research engagement and patient voice
TNA UK is already active in research engagement, trial awareness and patient voice.
Good research needs more than data. It needs patient trust, clear communication, practical insight and meaningful involvement from people who understand the condition.
TNA UK helps researchers and partners understand what patients need, what language they understand, what questions they ask, what barriers may stop them engaging, and what support may help them feel informed and safe.
Research should not treat people affected by TN as an afterthought. Patients should help shape the questions, priorities, outcomes and language from the beginning.
Research engagement in practice
TNA UK has practical experience of supporting research engagement in a safe, patient-centred way.
For the Neoma Libra trial, TNA UK supported patient engagement through approved communications, a patient webinar, helpline volunteer training, Regional Support Group lead training and member mailouts.
TNA UK records show that more than 400 people expressed interest following this engagement, and more than 320 attended the related patient webinar.
This demonstrates the value of working with an established patient charity.
TNA UK can help research partners communicate clearly with patients, support informed engagement, and provide independent information and signposting while the study team remains responsible for recruitment, consent, eligibility, governance and participant safety.
Our role is not to sell access to patients, hand over member lists or endorse treatment. Our role is to protect patient trust, improve understanding and help serious research reach people in a respectful, ethical and properly governed way.
Supporting informed research participation
Many TNA UK members are deeply interested in supporting research and helping improve understanding of trigeminal neuralgia and facial pain.
TNA UK facilitates this responsibly by ensuring that staff, trustees, helpline volunteers and Regional Support Group leads are appropriately briefed on relevant research opportunities.
This helps our support network provide clear information and signposting, while ensuring that trial-specific medical questions, eligibility decisions, consent and participant safety remain the responsibility of the research team.
This approach helps patients feel informed, supported and less isolated when considering research, while protecting independence, consent, data protection and patient trust.
A trusted patient support structure
TNA UK brings more than a mailing list.
We bring an established patient support structure.
Our helpline, e-helpline, Regional Support Groups, befriending support, webinars, mailouts, membership and patient communications allow us to support people before, during and after research engagement.
This matters because people considering research may need plain-English information, peer support and clear signposting.
Research participation is not only a scientific process. For patients, it can also be emotional, practical and personal.
People need to understand what a study is, what it is not, what questions they should ask, and where responsibility sits.
TNA UK helps people feel better informed while making clear that clinical trial teams and research teams remain responsible for recruitment, consent, eligibility, medical questions, trial governance and participant safety.
How TNA UK supports research partners
TNA UK can support ethical research engagement by:
sharing approved research opportunities with our community;
helping shape patient-friendly language;
supporting patient surveys and reports;
bringing lived experience into research design;
helping researchers understand patient priorities;
providing independent support and signposting;
training helpline volunteers and Regional Support Group leads where relevant;
supporting plain-English research updates;
hosting or supporting patient webinars;
helping partners understand delayed diagnosis, dental confusion, treatment burden and long-term pain; and
helping partners communicate with the patient community in a respectful and properly governed way.
TNA UK does not sell access to patients.
TNA UK does not hand over member lists.
TNA UK does not give trial-specific medical advice.
TNA UK does not recommend individual treatment.
TNA UK does not endorse a medicine.
Where TNA UK shares an approved research opportunity, the sponsor, research team or clinical trial team remains responsible for recruitment, consent, eligibility, medical questions, governance and participant safety.
Diagnosis, dental confusion and care pathways
Many people with trigeminal neuralgia experience confusion before they receive the right diagnosis.
Some are initially treated for dental pain. Others wait too long before being referred to clinicians with specialist knowledge of facial pain.
TNA UK hears these experiences through our helpline, Regional Support Groups, webinars, surveys and direct contact with patients and families.
We support work that improves earlier recognition, better signposting, clearer referral routes and access to appropriate specialist care.
TNA UK does not provide a diagnostic service. We do not replace doctors, dentists, neurologists, neurosurgeons, pain specialists or other healthcare professionals.
Our role is to support people with information, education and signposting, and to help make sure the patient voice is heard in work to improve care pathways.
Research areas TNA UK supports
TNA UK believes research and service improvement should focus on what patients need in real life.
Our priorities include:
earlier diagnosis;
reducing dental confusion;
better recognition in primary care;
clearer referral routes;
improved access to specialist assessment;
safer and better tolerated medication options;
understanding side effects and treatment burden;
surgical and procedural treatment outcomes;
emergency flare-ups;
mental health and emotional wellbeing;
work, family life and social isolation;
long-term quality of life;
patient-friendly information;
outcome measures that reflect what matters to patients;
registries and long-term data where properly governed;
research into new treatment options; and
progress towards lasting relief and, one day, a cure.
Research should not only ask what can be measured.
It should ask what matters to the people living with the condition.
Medical Advisory Board
TNA UK is supported by a respected Medical Advisory Board.
The Board brings specialist knowledge into our information, education, awareness and research engagement work, while TNA UK remains independent and patient-led.
This matters because people affected by TN need information they can trust, written in language they can understand.
The Medical Advisory Board helps TNA UK remain connected to clinical knowledge while ensuring that patient voice remains central to our work.
Professional education
TNA UK supports professional awareness by helping healthcare professionals understand the lived experience of trigeminal neuralgia and facial pain.
Patients often describe long delays, dental confusion, repeated appointments, medication changes, distress during flare-ups and difficulty knowing where to turn.
Professional education should not only explain symptoms and treatment options. It should also help professionals understand the human impact of TN and the importance of timely recognition, appropriate referral and compassionate care.
TNA UK can support professional learning through patient insight, lived-experience contributions, webinars, information resources and collaboration with clinicians and researchers.
Patient evidence from TNA UK surveys
TNA UK’s survey work strengthens our research engagement.
Our original Patient Experience Survey received more than 570 responses, with 567 people consenting for their anonymised information to be used by TNA UK and researchers to improve understanding and future care.
Our latest survey, championed by Aneeta Prem MBE and delivered by TNA UK, received more than 1,130 responses.
These surveys provide patient-reported evidence on diagnosis, pain, treatment, medication, dental confusion, emergency flare-ups, specialist access, work, family life, mental health and the daily reality of living with severe facial pain.
The survey evidence confirms what TNA UK hears every day: people affected by TN need earlier diagnosis, better treatment options, clearer information, faster access to specialist care and stronger support.
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What our patient evidence shows
TNA UK’s original Patient Experience Survey showed that many people live with trigeminal neuralgia for years.
Forty-one per cent of respondents reported symptoms for more than ten years.
Around one-third waited more than one year for the correct diagnosis.
Forty-two per cent were first told they had a dental problem rather than trigeminal neuralgia.
Seven in ten respondents said TN significantly or moderately affected normal daily activities.
Eighty per cent reported a negative impact on emotional wellbeing.
Two-thirds experienced social isolation or loneliness.
These findings must be interpreted carefully. Patient surveys do not replace clinical research and cannot measure the experience of every person with TN. They do, however, show a serious burden that must not be ignored.
Patient-reported evidence helps researchers, clinicians, funders, policymakers and life-sciences partners understand what matters to people living with TN and facial pain.
The wider cost of delayed diagnosis
Delayed diagnosis and unclear care pathways affect more than clinical records.
They affect patients, families, workplaces and health services.
People may attend repeated appointments, undergo unnecessary dental treatment, struggle to work, avoid social contact, need urgent help during severe flare-ups, or live for years without clear answers.
TNA UK believes patient experience should inform research into the human, social and economic burden of trigeminal neuralgia.
Understanding that burden matters if services are to improve.
Working with pharmaceutical and life-sciences partners
TNA UK is open to responsible collaboration with pharmaceutical companies, biotechnology organisations and life-sciences partners where the work is transparent, properly governed and clearly in the interests of people affected by trigeminal neuralgia and facial pain.
We can support ethical patient engagement, plain-English communication, patient insight, webinar education, survey work, research updates and signposting.
We can help partners understand the lived experience behind research: delayed diagnosis, medication changes, side effects, flare-ups, isolation, surgical decisions, treatment uncertainty and the need for better options.
Any collaboration must protect patient trust, charity independence, consent, data protection and clear patient benefit.
TNA UK will not allow commercial interest to override patient interest.
Working with funders, sponsors and donors
TNA UK welcomes conversations with funders, sponsors, grant-makers, corporate partners and individual donors who want to support better understanding, better information, better research engagement and better outcomes for people affected by TN and facial pain.
Funding can help TNA UK strengthen research engagement, patient surveys, plain-English research updates, webinars, helpline support, Regional Support Groups, professional education, awareness work, patient information, research partner communication, volunteer training and patient voice in future service improvement.
TNA UK is interested in funding that is ethical, transparent and aligned with our charitable objectives.
Volunteers and research support
TNA UK’s volunteers are central to our patient support work.
Helpline volunteers, Regional Support Group leads, trustees and trained supporters help us reach people affected by trigeminal neuralgia and facial pain across the UK and beyond.
Where research engagement is relevant, TNA UK can brief and train volunteers so they understand the purpose of the research, the limits of TNA UK’s role and the correct route for signposting patients back to the study team or their own healthcare professional.
This protects patients, supports informed engagement and helps maintain trust.
Funding research, education and patient voice
Donations to TNA UK help strengthen our work for people affected by trigeminal neuralgia and facial pain.
Your support helps us provide patient surveys, research engagement, trial awareness, plain-English updates, national webinars, helpline support, professional education and awareness work.
It also helps us build the evidence and patient support needed to influence better understanding, earlier recognition, clearer referral routes and improved care.
Every donation helps TNA UK turn lived experience into knowledge, and knowledge into change.
Leave a legacy for TN research and patient voice
A gift in your will can help TNA UK continue supporting people affected by trigeminal neuralgia and facial pain long into the future.
Legacy giving can help fund patient education, research engagement, survey work, professional awareness, helpline support and the search for better answers.
For many families, a legacy gift is a way to honour someone’s experience and help build a better future for others living with TN and facial pain.
Latest research and trial updates
TNA UK publishes research updates in clear language so that patients, families, professionals, researchers and funders can understand important developments in trigeminal neuralgia and facial pain.
Our updates explain what a study shows, what it does not show, and why it may matter for people living with TN.
Read the latest research and trial updates in our News section.
Featured research updates include:
New TN Trial Tests Earlier Gamma Knife
A plain-English update on research exploring whether Gamma Knife radiosurgery could be considered earlier for some people with trigeminal neuralgia.
IV Fosphenytoin for TN
A research update looking at hospital-based IV fosphenytoin and its relevance for acute trigeminal neuralgia flare-ups.
Swedish Trigeminal Neuralgia Study
A research summary highlighting the wider health, emotional and quality-of-life impact of trigeminal neuralgia.
TNA UK Research Funding and Donations
An update on why research funding, donations and patient voice matter for the future of trigeminal neuralgia care.
Transparency and independence
Patient trust comes first.
TNA UK will not share member access, patient stories, helpline insight, survey distribution or lived-experience information without appropriate consent, data protection review, trustee oversight, transparency about funding or partnership arrangements, and clear patient benefit.
Any research, pharmaceutical or life-sciences partnership must protect TNA UK’s independence and the trust patients place in us.
We want to work with partners who respect patients, value lived experience and understand that research must be done with people, not simply about them.
A note on urgent support
TNA UK provides information, support and signposting, but we are not an emergency service.
Anyone who feels unable to keep themselves safe should seek urgent help immediately by calling 999, contacting NHS 111, going to A&E, or contacting Samaritans on 116 123.
Frequently asked questions
What does TNA UK do?
TNA UK supports people affected by trigeminal neuralgia and facial pain through helpline support, e-helpline support, Regional Support Groups, befriending support, patient information, webinars, research engagement, professional education and patient voice.
Does TNA UK support research?
Yes. TNA UK supports research engagement, patient voice, patient education, plain-English research updates, survey work and ethical collaboration with researchers and life-sciences partners.
Does TNA UK take part in trial awareness work?
Yes. Where appropriate, TNA UK can share approved research opportunities with its community and support patients with information and signposting. The study team remains responsible for recruitment, eligibility, consent, governance and participant safety.
Can researchers work with TNA UK?
Yes. TNA UK welcomes appropriate approaches from researchers, clinicians, universities, NHS bodies, funders and life-sciences partners where the work protects patient trust and has clear patient benefit.
Can pharmaceutical companies contact TNA UK?
Yes. TNA UK is open to properly governed collaboration with pharmaceutical, biotechnology and life-sciences partners. We do not sell access to patients or endorse medicines. Any partnership must be transparent, independent and in the interests of people affected by TN and facial pain.
Does TNA UK provide a diagnostic service?
No. TNA UK does not diagnose, prescribe or provide individual medical advice. We provide information, education, support and signposting, and we encourage people to speak to their GP, dentist, neurologist, neurosurgeon, pain specialist or other appropriate healthcare professional.
Can TNA UK help improve care pathways?
TNA UK can help by bringing patient experience into conversations about earlier recognition, clearer referral routes, better signposting and access to appropriate specialist care. We do not provide clinical pathways ourselves, but we can show where patients experience delay, confusion or gaps in support.
How does TNA UK protect patients?
TNA UK protects patient trust, consent, data protection, independence and clear patient benefit. We do not share member access, patient stories, helpline insight or lived-experience information without appropriate safeguards and trustee oversight.
Can donors support research and patient voice?
Yes. Donations help TNA UK support patient surveys, research engagement, plain-English research updates, national webinars, helpline support, professional education and awareness work.
Can I leave a gift in my will to support future TN research and education?
Yes. A gift in your will can help TNA UK continue supporting people affected by trigeminal neuralgia and facial pain and contribute to future work on patient education, research engagement, professional awareness and better understanding.
Our position
People affected by trigeminal neuralgia and facial pain must not be treated as an afterthought in research.
TNA UK is already here, already listening and already supporting the patient community.
We listen. We support. We educate. We engage. We influence.
We are ready to work with responsible partners who respect patients, protect trust and want to improve diagnosis, treatment, support and quality of life for people affected by trigeminal neuralgia and facial pain.
