.jpeg)
By Aneeta Prem MBE
There is medical knowledge, and there is the knowledge that comes from living inside a condition every day.
They are not the same thing. They should not compete with one another either.
I live with trigeminal neuralgia and I lead TNA UK, The Facial Pain Charity. That gives me a particular perspective on the condition, but it does not make me a neurologist, neurosurgeon or pain specialist.
I am very clear about that distinction.
What I can bring is lived experience, years of listening to people affected by facial pain and a determination that patients should be treated as participants in healthcare rather than spectators.
What is trigeminal neuralgia?
Trigeminal neuralgia, usually shortened to TN, is a neurological pain condition affecting the trigeminal nerve.
The NHS describes it as sudden, severe facial pain, often sharp, shooting or similar to an electric shock. It can be triggered by ordinary activities including eating, talking, brushing teeth, touching the face or even a cool breeze.
Those words are clinically useful. But they cannot fully convey what unpredictability does to somebody’s life.
A few seconds of pain can change an entire day
An attack may last seconds. The fear of triggering the next attack can last much longer.
If eating may trigger pain, somebody may start changing how, when or what they eat. If air movement is a trigger, leaving the house can require planning. If talking hurts, a telephone call is no longer an ordinary task.
The burden of TN is therefore not measured only in the duration of an individual attack.
It includes anticipation, adaptation, isolation, medication effects, work, family life, sleep, confidence and the mental effort involved in constantly calculating what might trigger pain next.
This is where patient voice becomes evidence of a different kind.
Diagnosis is more than getting the correct label
The NHS recognises that TN can be difficult to diagnose and that many people first seek dental help because the pain is felt in the jaw, teeth or gums.
Diagnosis depends heavily on the description and pattern of symptoms, while MRI can help investigate potential causes and rule out other conditions.
That means listening is not an optional extra. The patient’s description is part of the diagnostic process.
How does the pain feel? Where is it? How long does it last? What triggers it? Is there numbness? Is there pain between attacks?
Those details matter.
Patient expertise is not clinical expertise
I sometimes hear discussions about whether patients are “experts”. I think the argument becomes easier when we stop pretending there is only one kind of expertise.
A clinician may understand anatomy, diagnosis, medication, procedures, risk and research in ways a patient does not.
A patient knows what it is like to take the medicine in the morning and then try to function at work. They know which side effect becomes intolerable. They know what a particular trigger means in a supermarket, an office, a restaurant or on public transport.
They also know whether a treatment result described as successful on paper has restored the parts of life that mattered to them.
Those forms of knowledge answer different questions. Good healthcare needs both.
What patient voice should mean
Patient voice should not mean inviting somebody to tell their story after every important decision has already been made.
It should mean involving people early enough to influence what is being decided.
When research priorities are set, patients can help identify questions that matter in real life. When information is written, patients can tell us whether somebody newly diagnosed will actually understand it. When services are designed, patients can explain practical barriers that may be invisible on a spreadsheet.
And when outcomes are measured, patients can ask whether the chosen measures reflect what treatment success actually means to them.
Pain reduction matters. So can eating normally, speaking, returning to work, sleeping, reducing medication because of side effects, leaving the house without fear of wind across the face and being able to hug somebody.
Healthcare outcomes should be able to see the person as well as the symptom.
Charities have a particular responsibility
Patient charities occupy an unusual position.
We are not hospitals. We do not replace clinicians. But we hear patterns.
We hear what people ask repeatedly. We hear where information has been misunderstood. We hear about difficulties moving between dentistry, general practice, neurology, pain services and neurosurgery.
That collective experience can help identify questions that deserve proper investigation.
The responsibility of a charity is not to turn anecdotes into medical facts. It is to listen carefully enough to recognise when a pattern needs evidence.
Treatment decisions must remain individual
There are medicines and specialist procedures used in the treatment of TN. Different options carry different potential benefits and risks.
No charity website, social-media group or individual patient’s experience should tell another person which operation or medicine they should have.
A treatment that transformed one person’s life may not be appropriate for somebody else.
Patient voice should improve informed decision-making. It should never replace it.
What I want to see next
I want people with TN to reach the right professional sooner.
I want facial pain to be better recognised across dentistry and medicine.
I want patients to receive information they can actually use.
I want research questions to reflect the realities patients describe.
I want services to understand the cumulative burden of pain, medication, isolation and uncertainty.
And I want people with TN to know that asking for psychological support does not mean anybody thinks their neurological pain is imaginary. Living with severe pain affects human beings emotionally as well as physically. Supporting both is not a contradiction.
The lesson TN has taught me
Long before I became involved in patient advocacy, I understood intellectually that listening mattered. TN made that lesson personal.
A patient’s story cannot tell us everything. Neither can a scan. Neither can a prescription. Neither can a questionnaire.
Each gives us a different part of the picture.
Patient voice is not about asking medicine to surrender its expertise. It is about making sure expertise never loses sight of the person it exists to help.
Important note
This article reflects lived experience and patient advocacy. It is not medical advice. Anyone experiencing frequent or persistent facial pain should seek appropriate medical or dental assessment.
