UK Sheffield TMAU testing SUSPENDED for unknown time

Sheffield Children's Hospital was the only known source of the TMAU urine test in the UK.
This was entirely down to lab clinician Nigel Manning.
The service ran from about 1998 to 2016.
But Mr Manning recently retired, and it seems the TMAU testing has been suspended.
It is not known how long it is suspended, but it could be forever.
This was the only UK source of the test.

Posted today by admin of tmau.org.uk forum
The admin of the UK TMAU support group tmau.org.uk posted this message today (Nov 4)

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

 read the post here    

Unacceptable service for a metabolic disorder
It does not seem right that a country depends on a clinician voluntarily setting up a test for a metabolic disorder and the test being seemingly entirely dependent on that person.

Arkansas
A similar issue arose at the Arkansas USA lab. The Denver hospital 'discovered' TMAU and has a history of testing. A Dr who worked with the lab then moved to AK and started testing there. However the testing there also stopped. It seems we are often dependent on unique individuals rather than a national test strategy.

Campaign to find new UK TMAU test lab (NHS at least, but preferably direct-testing)

Perhaps UK readers may feel like trying to do something about this, such as writing an email to 'decision-makers'. For instance the Health Secretary, MP's, regional Hospital Metabolic Test labs etc.

Example email (can be altered etc)
Here is an example email :

Dear

re testing for the metabolic disorder TRIMETHYLAMINURIA (TMAU) in the UK.
NEED FOR A UK LAB TO OFFER THE TMAU URINE TEST.
No UK/NHS lab now offers the test.

Until recently, Sheffield Children's Hospital was the only UK source of the TMAU URINE TEST in the UK. This service seemed to be entirely due to one person (a lab member), who both voluntarily started the service (around 1998) and recently retired.

Now it seems the TMAU test service is to be suspended for an unknown time.

One way of looking at this is that it is unacceptable for a country not to have a 'fixed' test source for a metabolic disorder test. Even better would be if relevant labs were told to offer the test from their own lab and not source it from one national lab.

NHS test service
It would seem sensible for the NHS to offer this test with a secure source at least.

Last known stats for Sheffield TMAU test service (from graph) :
samples tested :
2009 : about 220
2010 : about 590
2011 : about 580

Link to graphs : http://www.meboblog.com/2012/09/tmau-result-stats-from-sheffield-uk.html

Self-pay direct-test would be ideal option
For the community, ability to direct-test and self-pay would be the ideal option, but I understand our country has a 'cartel-type' system which suits NHS workers best.

GP's reaction to patient asking for test :
Never heard of TMAU.
Resents payment of test (even though patient would rather self-pay).
Refuses to test.
Has no idea what results mean.

I would be grateful if you would look into this and reply.

Regards

Possibly helpful images.
Last known Stats for Sheffield TMAU testing : 2011

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