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Significant legislative changes for UK doctors next month

Posted: Thu Nov 01, 2012 2:51 pm
by malory
Gentle Reminder on November 16th: Raising Awareness
We are making progress as far as raising awareness is concerned, but we can’t expect the general public to know about malodour conditions when the medical establishments don’t.

This is a good time to remind the medical establishments of our presence; for the first time in the UK in 150 years, there will be a legislative change regarding the monitoring of General Practitioners’ efficiency. In view of these changes, which will involve GPs coming under scrutiny, it may be that GPs are prompted into reflecting on their ‘continuing professional development’ and also the manner in which they interact with patients. In light of this, it seems a good time to remind the medical organisations and the health secretary that people with odour disorders not only exist but expect and deserve help.

On NOVEMBER 16th 2012, we could all send brief, polite e-mails and letters to the contacts below. My e-mail (less than 200 words) may be something like this:

Although you may have been contacted before regarding raising awareness of foul-odour-producing conditions such as TMAU (Trimethylaminuria), there has been little improvement in the situation for odour sufferers. I write now at a time when Sir Bruce Keogh is encouraging doctors to stay up to date with current developments in medicine.

• Some odour sufferers are still being misdiagnosed or fobbed off by baffled GPs. Sometimes their conditions are dismissed as ‘psychological problems.’
• Despite the fact that many odour sufferers suffer bullying and ostracism, their conditions are not always taken seriously by medical professionals.
• Odour conditions are still taboo disorders: even in the metabolic unit at the UCL Neurology Hospital where many TMAU patients undergo consultations, there are no informative leaflets or posters regarding the condition.
• There are no government-backed initiatives to educate the general public about odour disorders despite the fact that the number of sufferers is unrecorded and ever-increasing (TMAU test requests trebled over the past 2 years).

Thank you so much for reading this e-mail. I hope it results in direct action to address the issues raised. Failing that, could you please forward this e-mail to as many colleagues and medical professionals as you can.


UK Contacts

Royal College General Practitioners
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]

Royal college of Physicians
[email protected]
[email protected]

General Medical council
[email protected]
[email protected]
[email protected]
[email protected]

Medical Research Council
[email protected].

NPSA
[email protected]
[email protected]


Health MPs
[email protected]
[email protected]
[email protected]
[email protected]

Dental Orgs.
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]



Apologies for those e-mails which do not work. Please add relevant contacts to the list. I have not included online contacts or addresses for written letters but let me know if you would like these also.

Posted: Sun Nov 04, 2012 12:57 pm
by mike987
Let's keep this bumped until the 16th. I don't want to forget about this.

Posted: Thu Nov 15, 2012 2:30 pm
by malory
It is also 'Children In Need' fundraising time in the UK so I will re-word my e-mail to emphasise the fact that many sufferers of odour disorders are CHILDREN and that their social developments are seriously damaged by odour conditions.

In the USA people are sending letters of protest about proposed cuts to funding for rare disorders. Please see MEBO Research website for the NORD letter being sent in protest to these cuts and take action! Our disorders are considered 'rare' and any research to help us will take place under the umbrella term 'rare disorder'.

Posted: Fri Nov 16, 2012 10:26 am
by malory
HOPE SOME OF YOU TAKE PART IN THIS EFFORT-ESPECIALLY IF YOU LIVE IN THE UK!!!

Nobody will give us a cure on a plate. We have to fight for it, and remember that today (Children In Need day) children and teenagers with halitosis suffer even more than those of us who developed the disorder as adults