Herb2 40px

Joanna Zakrzewska Ledóchowska




TNI with address


The Trigeminal Neuralgia Institute UK ("TN Institute") was established by Professor Joanna Zakrzewska, Dr. Ann Hayes and Dr. Simon Tate in 2022.



All patients with trigeminal neuralgia to have equal access to evidence-based management provided with understanding and compassion.


●  To Discover
●  To Teach
●  To Care

The TN Institute will:

●  Promote and run research programmes into the causes, diagnosis and management of trigeminal neuralgia.
●  Train healthcare professionals to have the necessary skills to deliver high quality care to patients with this rare condition.
●  Provide trigeminal neuralgia patients across the country with a high quality advisory service for diagnosis and management, audited through a national registry.

Establishing the Institute

Trigeminal neuralgia is a rare, long term condition which results in brief recurrent, excruciating facial pain that has a significant impact on sufferers’ quality of life, in some cases leading to suicide.  It is estimated that there are 50,000 sufferers in the UK, with a peak presentation at 55 -70 years.  A recent UK study has shown that patients do not gain timely access to services or correct management and this results in high levels of disability.

The virtual TN Institute staffed by multispecialty healthcare professionals will ensure patients across the country have the correct diagnosis and an evidence-based patient-centred management plan implemented at identified centres of excellence.

The “Getting It Right First Time” (GIRFT) programme will ensure fewer inappropriate treatments are carried out.  A registry for both patients and health care providers will be set up to audit outcomes from management and to provide material for research.   Quality indicators would ensure the service is safe, effective, patient-centred, timely, efficient and equitable.  More healthcare professionals will be trained according to national guidelines and management will be underpinned by a high-class research program.

Professor Zakrzewska, an international expert on this condition, has developed a care pathway for this group of patients at University College London Hospitals NHS Trust based on over 25 years’ experience.  This multidisciplinary care pathway has been audited by an independent company and, in 2019, the team were finalists in the BMJ Clinical Excellence Awards and won the UCLH Clinical excellence award as the top quality patient care team.  The care pathway has been incorporated into the National Guidelines for Trigeminal Neuralgia published by the Royal College of Surgeons in 2021 and approved by all UK stakeholders.

UCLH TN Pathway


The TN Institute will be built up in stages over a five-year period.  Funding of around £2 million will be sought through a wide range of agencies.  The economic benefits will be fewer consultations and appropriate treatments resulting in a faster return to work and a resumption of the activities of daily living.  All patients will be encouraged to take part in research to improve not only our management of trigeminal neuralgia but also in finding a cause.

The TN Institute will deliver the Faculty of Pain Medicine’s core message that “the right patient should be with the right professional at the right time with timely passage from one to the other.”

Who will be the Patients and how will they be seen?

Patients will be referred from primary care, doctors and dentists, primary care specialists with a special interest in neurology, and other specialists who have made a  presumed diagnosis of trigeminal neuralgia.  Sufferers will also be able to self-refer.  Patients will complete an online specifically developed screening questionnaires to determine if they do potentially have trigeminal neuralgia.  Those patients who have a possible diagnosis of trigeminal neuralgia will then take part in a video linked telemedicine consultation.  A patient agreed treatment plan will be formulated and then discussed and managed at identified NHS centres of excellence.   Patients will be managed using national guidelines approved by all major UK stakeholders.  Patients will be asked to register on a database and complete an annual survey to monitor their outcomes. This data will provide long term data to improve research and enable more accurate prognoses to be made.

Healthcare Professionals

Healthcare centres that provide a multidisciplinary approach to the management of trigeminal neuralgia will be identified and patient referral to these centres will be encouraged.

More healthcare professionals will be trained and management will be underpinned by a high class research programme. GPs, TN specialists and other healthcare professionals who wish to participate in the TN Institute's programme will be encouraged to register with the Institute.

Sponsors / Funders

Individuals and institutions interesting in funding:

●  The treatment of patients who cannot be treated quickly enough or adequately by the NHS,
●  Research into improving knowledge and treatment of TN, and/or
●  The administrative costs of the Institute

are encouraged to email Joanna Zakrzewska on J.Zakrzewska@ucl.ac.uk or joanna@ledochowski.eu

Funding has been secured for a project to establish the prevalence of trigeminal neuralgia in England and Wales and to determine the patient journey over the years. 

A screening tool for determining the presence of trigeminal neuralgia in primary care has also been funded.

Application has been made to the Charity Commission for registered charity status. Once registered we will be entitled to ask individual donors wtih appropriate UK tax status to complete Gift Aid forms.

Account name
Trigeminal Neuralgia Institute
Bank name
Sort code 309191
Account number

Correspondence may also be sent to P.O. Box 617, New Malden KT3 9LB.


Patients are encouraged to take part in research to improve not only our management of trigeminal neuralgia but also to find and improve cures.   For this please contact jzakrzewska@nhs.net

For general support patients should contact Trigeminal Neuralgia Association UK ("TNA")

Updated December 2022




Information on living family members will be included in this website only if submitted or approved by them. Informacja o żyjących członkach rodziny może zostać umieszczona na tych stronach jedynie w wypadku gdy dana osoba wyrazi zgodę. Jan Ledóchowski