The TN Institute
The Trigeminal Neuralgia Institute (the "TN Institute") is a registered charity founded in 2022.
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.
We need help now
We are supporting active Research Projects and are working on a Care Pathway for Healthcare Professionals.
● We need Patients to help with the research projects.
● We need Sponsors for the projects.
If you wish to help contact us.
Vision
All patients with trigeminal neuralgia to have equal access to evidence-based management provided with understanding and compassion.
Mission
● To Discover
● To Care
● To Teach
The TN Institute's objects are:
● Promoting research into the causes, diagnosis and management of trigeminal neuralgia;
● Providing a diagnostic service for trigeminal neuralgia and signposting patients to centres of excellence where they can receive treatment;
● Advancing education in trigeminal neuralgia amongst healthcare professionals to enable them to provide effective care to their patients.
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.
One of the Institute's founders, 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.
Establishing the Institute
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.”
More information
For more information on how to donate go to donations.
If you are interested in sponsoring us go to sponsors.
To get in touch go to contact.
For more on our research plans see research.
If you are suffering or know someone who is suffering from TN, go to patients.
If you are a healthcare professional interested in becoming involved go to professionals.
For more information on our organisation and who we are go to about us.
Last updated 30.8.23