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Joanna Zakrzewska Ledóchowska

 

 


 


TN Institute from Ania




Professor Joanna Zakrzewska
is establishing the Trigeminal Neuralgia Institute ("TN Institute") 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.

Vision

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

Mission

●  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.

TNA UK will provide information and support both for patients and healthcare professionals.   Professor Zakrzewska 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 pathway follows the recently updated European Academy of Neurology guidelines on TN and is similar to a program run in Denmark.

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 would be fewer consultations and appropriate treatments resulting in a faster return to work and a resumption of the activities of daily living.  All patients would 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.  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 telemedicine 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 national guidelines based on international guidelines and approved by all major UK stakeholders.  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 joanna.zakrzewska@tna.org.uk

Sponsors

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 centre

are encouraged to email Joanna Zakrzewska on joanna.zakrzewska@tna.org.uk

Patients

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 to find and improve cures.


Updated May 2021

 

 

 

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