April CEO Update: TNA, patient voice and the London Marathon
April has reminded us why TNA UK’s work must stay close to the real lives of people living with trigeminal neuralgia. Our focus has moved from stress and dental confusion to disability benefits, patient voice, practical support and the generosity of those raising awareness for a condition still too often misunderstood.
Trigeminal neuralgia is a severe facial pain condition. For many people, it affects far more than pain alone. It can affect eating, speaking, sleep, work, confidence and ordinary daily life.
That is why our work this month has centred on clarity, support and patient voice.
Stress and trigeminal neuralgia
April was Stress Awareness Month. We focused on a simple but important point.
Stress does not cause trigeminal neuralgia. However, living with severe facial pain creates pressure that can be difficult to explain. The uncertainty of attacks, poor sleep, exhaustion and the need to manage daily risk can take a real toll.
Our article sets this out clearly and avoids the common misunderstandings that patients often face.
Read more here:
Does Stress Make Trigeminal Neuralgia Worse? What Actually Helps
Facial pain and the route to the right care
We also addressed a growing concern around dental access and facial pain.
Trigeminal neuralgia is not a dental condition. Yet many people first enter the system through dentistry or primary care. When access is limited or pathways are unclear, people can feel lost before reaching the right specialist support.
This is not just about access. It is about recognition. Facial pain is complex, and people need clear, informed guidance at the right time.
Read more here:
Dental Crisis Facial Pain
PIP and the reality of living with TN
April also brought renewed attention to disability benefits. For people living with trigeminal neuralgia, the key issue is practical.
PIP is based on how a condition affects daily life. For many of our members, that may include difficulties with eating, preparing food, speaking, washing, travelling and managing a normal routine safely and reliably.
Our article explains this carefully, without overpromising, and helps people understand how to approach the process.
Read more here:
Trigeminal Neuralgia PIP
Listening to the patient experience
Patient voice remains central to TNA UK.
Through our survey and ongoing contact with members, we are building a clearer picture of what people experience across diagnosis, treatment, support, mental health and daily life.
This evidence matters because it helps us speak from real experience, not assumption. It strengthens our conversations with clinicians, policymakers, funders and partners, and it helps keep patient reality at the centre of our work.
You can find my CEO messages here:
CEO Messages by Aneeta Prem
Running the London Marathon for trigeminal neuralgia
April also brought a moment of real commitment and generosity.
David De Rosa completed the London Marathon in support of TNA UK. His effort helped raise awareness and funds for people living with trigeminal neuralgia and facial pain.
We are very grateful to David and to everyone who supported him. Fundraising like this helps bring visibility to a condition that too many people still do not understand.
If you would like to support our work, you can donate here:
Donate to TNA UK https://www.justgiving.com/page/david-de-rosa-1
Support that understands
TNA UK continues to provide practical support through our helpline, e-helpline, regional support groups and information resources.
For many people, speaking to someone who understands the condition can make a real difference.
Find out more here:
TNA UK Helpline
Bank holiday reminder
With the May bank holidays approaching, it is worth checking prescriptions and repeat medication in advance.
Opening hours for GP surgeries and pharmacies can vary over bank holiday weekends. Planning ahead can help avoid last-minute difficulty, particularly for those managing ongoing pain or complex treatment routines.
TNA UK cannot provide medication advice. If you have concerns, please speak to your GP, pharmacist or clinician.
Looking ahead
As we move into May, our focus remains clear.
We will continue to strengthen patient voice, improve understanding of trigeminal neuralgia, and support people navigating a system that can still be difficult to access and understand.
April has shown that awareness alone is not enough; people living with trigeminal neuralgia need information, practical support and a stronger public voice.
Thank you to every member, volunteer, donor and supporter. Your involvement helps ensure that people living with trigeminal neuralgia are not facing this condition alone.
Our purpose is clear: to make sure people living with trigeminal neuralgia and facial pain are heard, understood, supported and properly recognised. We also continue to push for better treatments, deeper understanding and, in time, progress towards a cure.
Aneeta Prem MBE, London 29 April 2026
CEO, TNA UK