Conference details: 5th TNA UK conference, 3rd June, 2017; London, UK
Report by: Joanna Zakrzewska, Chair of Medical Advisory Board of TNA UK and Adrian Hale, Chairman of Trigeminal Neuralgia Association UK.
Patients and healthcare providers’ perspectives on the diagnosis and management of trigeminal neuralgia.
A recent article in the BMJ by Chu et al (BMJ 2016;354:i3883 doi: 10.1136/bmj.i3883) highlights the need for more medical conferences to actively involve patients using the old slogan – nothing about us without us.
This fifth one day joint conference between sufferers of trigeminal neuralgia (TN), their carers and health care providers (HCP) aims to improve our understanding of diagnosis and management of TN as a result of sharing information.
A panel of HCPs from different specialities will provide their diagnosis based on four different histories presented by patients. We will then discuss the varying presentation of this condition followed by Prof Nurmikko’s talk on how modern imaging may help in diagnosis and prognosis. Working in groups, patients will discuss how they have been managed medically and HCPs will decide on the ideal medical management. Feedback from the groups will determine how much of a mismatch there is between recommendations and actual treatments. Prof Zakrzewska will provide some insight on how patients with TN are managed in their first three years in the US based on insurance claims.
HCP’s suggest that a 50% reduction in pain after drug therapy and 100% pain relief after surgery are considered good outcomes. Sufferers working in groups will discuss outcomes that are important to them including views on the recently developed Penn Facial measure. Dr Riodrain will discuss how core outcome measures in effectiveness trials could be developed using the COMET methodology http://www.comet-initiative.org/. This is of especial importance given upcoming drug trials for a new drug for TN.
One patient’s journey from diagnosis to surgery will be portrayed through the use of photographic images created as part of a project on visualisation of pain. Mr Owen Sparrow will speak about his 20 years’ experience of surgical management. The criteria for referral for Gamma Knife surgery to one of the two UK designated Trusts for this procedure will be provided by Prof Loescher.
The final session will explore ways in which patients can be supported through patient support groups, clinical nurse specialists and clinical psychology.
Previous conferences have been highly evaluated and have all had CPD accreditation from the Royal College of Physicians. We need to change the way TN is managed in the UK and such a joint meeting will be a stepping stone in the right direction. Come and get involved!
