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Joanna Zakrzewska Ledóchowska




The National Institute for Trigeminal Neuralgia
("TN Institute")

Professor Joanna M. Zakrzewska


Professor Joanna Zakrzewska is establishing the TN Institute - the National Institute for Trigeminal Neuralgia ("TN") - in collaboration with the patient support group and registered charity the Trigeminal Neuralgia Association UK ("TNA UK"), of which she is Trustee and Chair of the Medical Advisory Board.

The TN Institute aims to advance knowledge and treatment of TN for the benefit of patients and practitioners. It will in particular:-

Why is the TN Institute needed?

TN is a rare, long term condition which results in brief, recurrent, excruciating facial pain that has a significant impact on the sufferer’s quality of life. It is estimated that there are 50,000 sufferers in the UK, with a peak presentation at 60-70 years. Professor Joanna Zakrzewska is an international expert in this condition and has developed care pathways for this group of patients at UCLH based on over 25 years’ experience.

There are not enough services in the UK and it takes on average four years for a patient to be referred to a specialist centre (1). Despite the availability of numerous published guidelines, including those from NICE (Neuropathic Pain Guideline 173), up to 40% of patients undergo inappropriate and suboptimal care including irreversible dental treatment. There are insufficient specialists trained in managing these patients.  The TNA UK patient support group has attempted to raise awareness among healthcare professionals by organising conferences for them. These are very favourably evaluated but attendance is low and so there remains a lack of trained staff. It also means there is variability and inconsistency of current access to care across the UK.

The specialist, multidisciplinary, research-led national centre will enable patients with TN to obtain the correct diagnosis and follow a more effective care-pathway. These would give considerable economic benefits as there will be fewer inappropriate consultations and treatments. Other indirect savings include fewer lost work days and increased productivity as, once pain free, patients can return to normal activities. 

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.”

Care pathways

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. TNA UK will also advertise the service. Patients will complete questionnaires to enable more effective triage. They will then be seen face to face or take part in video linked consultations. A patient agreed treatment plan will be formulated and managed locally. If required, subsequent consultations will also include telephone consultations and /or group sessions. Care will be shared with GPs and other specialists. Patients will be managed using international guidelines developed over the years and adapted based on new research. They will complete an annual survey to monitor their outcomes and provide long term data to improve research and enable more accurate prognoses to be made.

Healthcare Professionals

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 are encouraged to look at the TNA UK website, attend conferences on the topic, or email Joanna Zakrzewska on J.Zakrzewska@ucl.ac.uk


Individuals and institutions interesting in funding

are encouraged to email Joanna Zakrzewska on J.Zakrzewska@ucl.ac.uk


For the time being patients with TN should contact the patient support group Trigeminal Neuralgia Association UK ("TNA UK") for further information. They are encouraged to take part in research to improve not only our management of trigeminal neuralgia but also finding and improving cures.

April 2017


(1) Zakrzewska JM, Wu J Mon Williams M ,Phillips N. Pavitt SH Evaluating the impact of trigeminal neuralgia. Pain 2017 Jan 18. doi: 10.1097/j.pain.0000000000000853. 



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