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tmau testing withdrawn by NHS UK
tmau testing withdrawn by NHS UK
For several years, the community of sufferers of metabolic disorder Trimethylaminuria have been struggling to raise awareness of the condition and to convey the severity of the symptoms to health professionals and the general public alike. Trimthylaminuria (TMAU) causes the sufferer to emit repellent, pungent odours, which render the sufferer a social misfit. The TMAU sufferer usually struggles at school and in the workplace and often suffers financial loss as a consequence. Although TMAU is a disorder recognised by the NHS, and various consultants help patients to try to manage symptoms, our community has now been hit by a retrograde decision: the current testing facility to be diagnosed for this disorder has been withdrawn from us.
Reasons to reinstate the Trimethylaminuria testing service:
• It is unacceptable for the UK not to have a reliable test source for a recognised metabolic illness which has, for several years, been acknowledged and managed by the NHS.
• TMAU sufferers are often unemployed or under-employed because of their socially alienating conditions. The resultant loss of income means that TMAU sufferers will find it extremely difficult to fund private testing options.
• The number of people, especially young people, with suspected TMAU has steadily increased over recent years. These people need to be tested to ascertain exactly what the source of their odours are. In this way, they can, at least, follow the right treatment protocol in an attempt to control their symptoms.
Link to graphs : http://www.meboblog.com/2012/09/tmau-re ... ld-uk.html
• The person without a diagnosis will have no access to any support networks offered by the NHS (dieticians, specialist consultants, counsellors etc) and will be more susceptible to bullying, social isolation and s*****e as a result.
Contact:
English Health Secretary:
The Rt Hon Jeremy Hunt MP
Via e-mail: https://www.jeremyhunt.org/contact
Paste the address into your browser: https://contactus.dh.gov.uk/?openform
Via telephone: 0207 210 4850
Via post: 2 Royal Parade, Tilford Road, Hindhead, Surrey GU26 6TD
The Welsh Cabinet Secretary for Health, Well-being and Sport:
Vaughan Gething
Via email at: [email protected]
http://gov.wales/about/cabinet/cabinetm ... g/?lang=en
Scottish Cabinet Secretary for Health and Sport:
Shona Robison MSP
Via e-mail: [email protected]
Postal address: St. Andrew's House, Regent Road, Edinburgh, EH1 3DG