Annual Report 2025
The Trigeminal Neuralgia Institute (TNI)
Goals
-
1) To identify Centres of Excellence throughout the UK where patients can receive an accurate diagnosis of TN and the appropriate treatment.
-
2) Reduce the long-term costs associated with the current pathway.
-
3) Reduce the time from first incidence to treatment through use of a screener tool.
Chair’s Statement
A strong year for the TNI and meaningful progress.
One of the prime goals of the charity is to reduce the time from the onset of Trigeminal Neuralgia (TN) to diagnosis and medical intervention. This requires a reliance upon current data obtained and validated from a variety of sources which then needs to be compared to the status quo to establish potential refinements. In doing so, it is expected that such improvements will also yield a cost-saving to the NHS both in terms of time and money.
In collaboration with LifeArc, we have started to research the trigeminal neuralgia (TN) patient journey in the UK, through expert and dedicated bioinformatic analysis of patient data, which has been collected in the Clinical Practise Research Database (CPRD) database by healthcare practitioners. The aim of this work has been to determine the epidemiology of trigeminal neuralgia, determine how it is managed and understand the key events leading to and following from a trigeminal neuralgia diagnosis. While only preliminary at this stage, we can already see interesting trends in the UK TN patient data set, which are moving us forward with our goals. Prof. Joanna Zakrzewska, Co-Founder and President of the TNI has led much of this collaboration with LifeArc and has recently presented the first interpretation of the data at the 19[th] European Headache Congress in Lisbon, Portugal December 2025. The elucidation of the TN patient journey and the collaboration with LifeArc will continue, as we look to refine the dataset through careful iteration and new analyses.
We have made first contact with experts in the field of Health Economics, where we aim to compare and contrast the current situation for treating TN, with what could be achieved using an improved care pathway. Following the NHS’ GIRFT (Getting It Right First Time) programme, a workstream for pain has been introduced and TNI has made contact with them so that we can become involved as this initiative gains momentum.
We are delighted to have extended our team in 2025, bringing in Prof. Graeme Henderson from the University of Bristol, a world renowned expert in the pharmacology of pain, as a Trustee. We have also been joined by Dr Irene Matucci, Manager from ICG, who will spearhead our communications and fundraising strategy.
As of 5[th] April 2025, the charity has funds of £16,891.22, with an income of £1200.00 since the last return. This increase has been driven by income from consulting fees, gained through work of the TNI Trustees and donations from companies and generous individuals. We would like to thank everyone who has contributed to the TNI this year.
There is much to do as we look forward to 2026 and beyond. A main focus for 2026 is to launch the TNI strategic plan alongside our logo and revised website, allowing stakeholders and
potential investors to comprehend the full value and importance of improving the lives of all patients with TN.
Trustee Meetings
Since the last Annual Report, the charity has continued to hold Trustee meetings, both in person and on line, the minutes and actions of which have been well documented.
In November 2025, Professor Graeme Henderson joined our board of Trustees and Dr Irene Matucci joined the TNI leadership group.
2025 Accounts Summary
Starting Balance 1st January 2025 £15,691.22 Income` £1,200.00 Ending Balance 31st December 2025 £16,891.22