Article published thanks to UK campaign


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Article published thanks to UK campaign

Postby malory » Thu May 17, 2012 12:08 pm ... eytype=ref

We should never allow ourselves to be dragged down by the scepticism of fellow sufferers regarding ‘raising awareness’ campaigns; thanks to the UK raising awareness campaigns last year, synchronised e-mailing to the Royal College of General Practitioners and follow-up letters and calls, I managed to publish an ‘odour article’ in ‘Innovait’, which is a journal for graduating doctors published by the RCGP.
We all know that unsolicited manuscripts are most often rejected. I was lucky because somebody at RCGP forwarded one of my raising awareness e-mails to the Innovait editors, perhaps with a suggestion that they feature TMAU in an edition of the journal. Without this initial recommendation I think my article would not have been published so it is thanks to all those people who joined me in sending e-mails to the UK medical establishments and thanks to all those people who allowed me to use their true accounts of ‘living with odour’ for the raising awareness campaigns. Also, the sharing of information during the meet-ups was also very helpful so thanks to those who organise the meet-ups and those who attend them. Several months later, we have a small (but significant) result.

The original article had been written for (and already rejected by) newspapers so it was not suitable for a medical journal. However, the editors were incredibly supportive and helped me with the lengthy process of editing, re-editing, rearranging the content of the article so that all emotive adjectives were removed, the underlying critical tone of the medical profession was diminished and a scientific diagram, courtesy of Dr Elizabeth Shephard, was included.

Although 800 words were cut, I hoped the main points would still be included: the lack of understanding of most GPs and failure to diagnose; the danger of GP’s denying the problem; the need for research into odour conditions; the need for sensitivity and mental health support for younger sufferers particularly; the expense of nutritional supplements for sufferers who are unemployed or under-employed because of the condition.

E-mail discussions with the team of RCGP’s Innovait GPs were very interesting and confirmed:
Odour conditions are covered by the UK Disability Act in that you can be classified ‘disabled’ for conditions which adversely affect your day-to day activities. It follows that unemployed sufferers in the UK should be entitled to disability benefits.
The GPs questioned the validity of my statement that TMAU sufferers find it hard to get supplements on prescription. They clarified that any GP is able to prescribe calcium supplements etc. (obviously, it can be cheaper to buy certain supplements at the pharmacy if you are employed) and that consultants have the greater power of being able to prescribe virtually anything they consider relevant to the patient’s wellbeing.
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