TNA UK Joint patients’ and healthcare professionals’ conference

Birmingham Dental School and Hospital had the great pleasure to host the 6th Biennial Trigeminal Neuralgia Study Day for health care professionals and patients on the 2^nd of March 2019 under the auspices of the Trigeminal Neuralgia Association (TNAUK), with the chair of their medical advisory board Professor Joanna Zakrzewska. This was a unique event, as patients and their carers, health care professional (HCP), General Practitioners (GPs), Dentists, and Neurologists shared their experiences and knowledge on Trigeminal Neuralgia along with excellent speakers. This year’s meeting was very well attended by 130 participants, with nearly equal numbers of patients and HCPs; the highest number so far for these events.

The aim of the event was to improve understanding of diagnosis and management of trigeminal neuropathic pain through interaction between patients with facial pain and healthcare professionals.

The day started with Prof Joanna Zakrzewska’s short introduction on the principle features of a good facial pain history. In front of the whole audience Professor Zakrzewska took a history from a patient who had volunteered and whom she had never met. A panel of specialists including Neurologist, Neurosurgeon, and Dentist then asked supplemental questions and proposed their probable diagnosis. The audience also had a chance to ask questions, which led to an interesting discussion between health professionals and patients with TN, who were very willing to share their stories. All came to appreciate the complexity of making a diagnosis. The first session finished with a coffee break, where participants had a chance to continue sharing their experiences.

In the second session, the participants were divided into two groups; patients and health professionals where the patients then discussed, what outcome measures where important to them. The session was facilitated by Dr Carolina dos Santos Venda Nova who is doing a PhD on core outcomes in TN. Meanwhile the HCPs had a chance to listen to an exciting talk by Professor Alison Loescher from University of Sheffield about trigeminal nerve injury and its differentials. Afterwards, all participants gathered for lunch and continued their discussion. It was a great opportunity for networking, but also for meeting new friends, as trigeminal neuralgia affects only a small group of patients but with a great need for support.

After lunch, Professor Turo Nurmikko demonstrated on a volunteer how a patient with facial pain should be examined with special emphasis on neurological testing.  The demonstration helped both patients and health professionals to understand the different types of examination. Professor Nurmikko finished his talk by presenting different imaging for trigeminal neuropathic pain.

Small group work took place in the 4^th session: the TN patient groups discussed what medications they are using and why, all facilitated by Dr Carolina dos Santos Venda Nova. The same question was given to HCP groups along with discussion of 3 clinical cases. These exercises showed how complex TN can be and that each patient is different and, therefore, so is the treatment. Afterwards groups gathered together to share their feedback on their findings. The session was followed by presentation from Prof. Joanna Zakrzewska about new guidelines for drug therapy for TN and discussion between participants around whether patients are following these guidelines.

Dr Robert Coveney, who is a Dentist and suffered from TN himself presented the 5^th session and shared his own experiences and journey as a health care professional and TN sufferer.

The session finished with brief information about psychology support, TNA UK website, conferences and how to search the internet for TN.

After refreshments, Mr Owen Sparrow and Mr Imran Noorani presented neurosurgical procedures for TN and gave an overview about surgical approach for TN. The last speaker was Mr Cameron Werner, who presented his research report of a qualitative study on the experience and management of TN.

The Study Day finished with an evaluation of the conference using a novel feedback method, where each participant had to complete the sentence aloud:

“Reflecting back on the day, I . . . .2  in front of the audience.

The positive feedback received on the evaluation forms reflects a very unique and interesting study day, in which patients and HCPs had the opportunity to share their knowledge and experiences of TN.

Evaluation of the event showed, that both patients and HCP appreciated most the networking opportunities and interactive nature of the meeting.  The patient group was represented by 70% female and the average age was 62 years, from which 73% were TNA UK members. The most important outcome from the meeting for patients was the opportunity to meet other TN sufferers, share their experiences and discuss them with leading HCPs in the field of TN.

HCPs pointed that the meeting will have impact on their future daily practice, with improvement in examination, diagnosis and further management, including referrals to other specialists.

HCPs appreciated better understanding of treatment options, different drug regimes and presentation of more evidence in prescribing and pharmacological management.