Here is the approved version of the meeting summary :
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.
0 comments: