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UK Raising Awareness campaign

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malory
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UK Raising Awareness campaign

Post by malory »

Human Resources departments really need to know about odour disorders as some employees' working lives are so affected by them. Kitty pointed out that some members of our community work for the NHS but that the NHS is not as knowledgeable about TMAU and odour disorders as we we would hope. How many of us have expected better/more sympathetic treatment from NHS staff and then been disappointed to find them just as uneducated as the general public?

Medical professionals are people we aspire to: they need to lead the way for the general public and should be educating laypeople about the existence of these conditions. When HIV first appeared the medical establishments did a lot to educate laypeople - they dispelled myths about HIV and prevented a lot of ignorant discrimination. The same needs to happen with odour disorders. Most NHS staff know about tourettes, psoriasis, alzheimers... you name it they know about it and try to discourage ignorant, intolerant behaviour towards sufferers of medical conditions. Odour disorders are medical conditions so...

Kitty has found 4 addresses for us to contact. We need to tell them briefly about TMAU and systemic odour conditions, make them aware of how serious its impact is and let them know that they may come across staff who suffer from such disorders:

Chartered Institute of Personnel and Development (CIPD)
CIPD House
Camp Road
Wimbledon
London
SW19 4UX
Tel: 020 8971 9000
Fax: 020 8263 3333
Website: http://www.cipd.co.uk/

Healthcare People Management Association (HPMA)
HPMA Head Office
Gothic House
3 The Green
Richmond
Surrey
TW9 1PL
Tel: 0208 334 4530
Fax: 0208 334 4531
Email: [email protected]
Website: http://www.hpma.org.uk/

National Association of Medical Personnel Specialists (NAMPS)
Email: [email protected]
Website: http://www.namps.org.uk/

NHS Graduate Management Training Schemes
Email: [email protected]
Website: http://www.isthenhsforme.co.uk (For information on the HR Management Training Scheme)

The date for this raising awareness initiative: MONDAY 25TH JUNE

Please take a few minutes to e-mail if you can! :)


malory
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Post by malory »

UK RAISING AWARENESS WEEKEND IS HERE

Here is a copy of the e mail I will send to the above contacts although I will try to shorten it as it is too long:

I am writing to ask for your co-operation in raising awareness of a devastating but largely ignored medical condition which may affect the well-being of some NHS staff and NHS clients. Metabolic disorders such as TMAU (Trimethylaminuria) socially incapacitate the sufferer because of the repellent odour caused by the condition. The odour can be emitted via the mouth, pores or any bodily orifice or secretion and, in most cases, the sufferer is unable to alleviate/control this odour through diet or antibiotics.

As a sufferer of TMAU, I look to the NHS as an educator of the general public regarding medical conditions; NHS staff often provide
role models for society by encouraging people to be tolerant of the many medical conditions which may cause people to deviate (physically and/or mentally) from the norm. TMAU is such a condition. The number of people suffering from metabolic disorders causing systemic halitosis and body odour is increasing and many of these people struggle to fit in to a working environment and contribute positively to society. Even if discrimination against metabolic odour sufferers is unlawful, there is a great taboo around these conditions and it is the role of the NHS to help break down this taboo.

Would you please assist the community of sufferers I represent by sharing this information about TMAU/metabolic odour disorders and by encouraging staff to be aware of the fact that such conditions exist and that they are not in any way linked to the hygienic practices of the sufferer. Odour sufferers rely heavily on many NHS services including endocrinologists, gastroenterologists, counsellors, ENT specialists and dieticians. Please help us to foster greater understanding of odour conditions so that sufferers working within the NHS or using its services may be supported.

I thank you for taking the time to read this letter and hope you will consider signing the online petition created by our charity, MEBO Research.

http://www.bloodbornebodyodorandhalitosi....ch-funding.html :)
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Virtuous Viking
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Post by Virtuous Viking »

You're doing a wonderful job Malory and are a true inspiration. Thank you.
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