Prof Shephard London TMAU meeting 19/10/19 : update and summary

Long-time FMO3/TMAU researcher, Dr Elizabeth Shephard, hosted a TMAU community discussion on 19 Oct 2019 in London.

Here is the approved version of the meeting summary :

Meeting with Dr, Azara Janmohamed and Professors Elizabeth A. Shephard, and Ian R. Phillips
19.10.19. at St Mary’s Hospital.

We discussed:

 The issue of disability rights for odour sufferers, including those odour sufferers without
diagnoses. The goal is to acquire disability status for all odour-producing disorders. The
starting point to achieve this is an application to the Halley Stewart
Trust http://www.sirhalleystewart.org.uk/what-we-do/what-we-fund/ .
If successful, the Trust will fund a post for a research associate who will conduct interviews/written surveys with the community. With quantitative evidence of discrimination in the workplace/social inequality etc, the backing of Halley Stewart Trust, and support from UCL, we hope to establish an All Party Parliamentary Group to represent TMAU/metabolic odour disorders and effect change via MPs. The outcome of this application will be known only in about 5 months time.

 The possibility of liaising with other researchers to talk about their findings on volatiles other
than TMA; of exploring a new test; of discussing possibilities for blood or urine tests. Test
accuracy should be the focus of any test procedure.

 The idea of producing a leaflet specifically for patients to take to GP consultations. Liz
Shephard suggested brief info/bullet points that are informative but brief. The draft
leaflet would be shown to a group of clinicians to ensure they felt it contained sufficient
informative information. The final leaflet would then be prepared.

 The problematic lack of communication between the different clinical specialities involved in
managing metabolic odour disorders (eg. Endocrinology is just one department). The lack
of communication between specialities impedes progress.

 The idea of investigating the relationship between stress and odour, but this would be
difficult because it would be unethical to deliberately cause psychological stress to the
patient.

 The idea of making a video, using actors, to recreate a scenario of odour discrimination.
It was decided that:

 The ‘fish odour’ misnomer should be requested to be removed from the NHS website.

 A list of consultants with experience of working with patients with TMAU should be collated

A summation may be, that a grant request to hire a researcher to gather evidence testimonials of TMAU has been put forward to the Sir Halley Stewart Trust. The request will be considered around February 2020.

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