IMPORTANT - TMAU TESTING SUSPENDED

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IMPORTANT - TMAU TESTING SUSPENDED

Postby admin » Fri Nov 04, 2016 10:15 am

Dr Manning has recently retired – due to problems with the assay they have suspended testing for TMAU for the foreseeable future. This is clearly a huge issue for those wanting to be tested,

Currently Sheffield is (was) the only lab in the UK running this test – the alternatives are labs in the US or Netherlands but I have no idea of prices and whether a GP would fund.

Unfortunately Dr Lachmann will not be able to accept any new referrals at the moment as a result.

New information will be posted as and when I receive it. 4th November 2016
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Re: IMPORTANT - TMAU TESTING SUSPENDED

Postby malory » Sat Nov 05, 2016 10:51 am

http://www.meboblog.com/2016/11/uk-shef ... d-for.html

Whether you have a positive diagnosis of TMAU or not, the withdrawal of the UK’s NHS testing service is relevant to everyone in the malodour community and will have a very negative impact on all people who suffer from malodour conditions, regardless of the cause of that condition. This is because the TMAU urine test – however flawed or limited it may be – is ALL we have to convince medical institutions to take odour conditions seriously. For this reason, we must all protest about what has happened and try – yet again – to convince the ministers of health to take malodour conditions seriously. Please take the time to write a brief letter of protest to the contacts below. This is not a time for waiting for somebody else to make the effort. Neither is it acceptable to say that you don’t want to share your e-mail address because you want to remain anonymous: you can post a handwritten letter or make a telephone call instead!


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. Trimethylaminuria (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 suicide 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: Correspondence.Vaughan.Gething@gov.wales
http://gov.wales/about/cabinet/cabinetm ... g/?lang=en
post: Minister for Health, Welsh Government, 5th floor, Cardiff Bay, Cardiff, CF99 1NA.

Scottish Cabinet Secretary for Health and Sport:
Shona Robison MSP
Via e-mail: scottish.ministers@gov.scot
Postal address: St. Andrew's House, Regent Road, Edinburgh, EH1 3DG
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Re: IMPORTANT - TMAU TESTING SUSPENDED

Postby malory » Thu Nov 10, 2016 8:52 am

Another contact to appeal to/request a proper strategy for TMAU testing:
Health Committee
Health Committee examines policy issues related to the Department of Health and its associated bodies.

Committee Members contact details
Health Committee
House of Commons
London
SW1A 0AA
Telephone: 020 7219 6182
Email: healthcom@parliament.uk

http://www.parliament.uk/business/commi ... ttee/role/
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Re: IMPORTANT - TMAU TESTING SUSPENDED

Postby admin » Thu Nov 17, 2016 8:49 am

********************* UPDATE 17/11/2016 ******************************

Sheffield tells me they are hoping to sort out their technical difficulties by the end of the year.

We are also looking at setting up the assay here (Dr Lachmanns Hospital), although that may take a bit longer.

For the moment we are holding new referrals as there isn’t much we can do until we can test them. Once the test is available again, we will send out appointments. If there is a prolonged delay we will have to ask GPs to re-refer due to NHS 18 week rules.
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Re: IMPORTANT - TMAU TESTING SUSPENDED

Postby admin » Fri Nov 18, 2016 5:02 pm

*****************update 18/11/2017 ***************************
I have been contacted by the Sheffield Laboratory and they have kindly allowed me to reproduce their latest information;

TMAU testing

Please note, due to analytical issues, the Trimethylaminuria (TMAU) laboratory service is temporarily suspended. This does not affect the clinical referral service.

We fully understand the importance of the Trimethylaminuria (TMAU) testing service and are committed to continuing it.

Since the founder of the service retired two years ago, we’ve invested in new staff for the service and purchased a new specialised testing machine.

Unfortunately we have had some technical issues in recent weeks and have temporarily suspended the service while repairs are made to the machine. We are doing everything we can to get the service up and running again as soon as possible, because we appreciate how much a reliable service matters to the patients we work with.

All the samples already sent us are being stored appropriately at -80 degrees and will be tested as soon as the testing service is restored.

In the meantime, we’ve written to the laboratories and doctors who request tests from us, letting them know about the testing services available outside the UK. We are also pushing through our networks for further testing centres in the UK, to ensure a more resilient service for patients requiring the test.

We hope to restore our own service shortly.

If you would like to be contacted when the service is restored, please give us your email address using this simple form.


See http://www.sheffieldchildrens.nhs.uk/ou ... cine?tab=4 for the original message and the form.
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Re: IMPORTANT - TMAU TESTING SUSPENDED

Postby admin » Tue Feb 07, 2017 3:33 pm

testing due to resume shortly, please see

viewtopic.php?f=15&t=3034
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