UK NHS TMAU Test Campaign : Health Committee

Sheffield TMAU urine test 

Discussion :
It seems the UK NHS (and probably all national health systems) do not have a 'rare disorder test strategy' outside of those disorders that are part of the National Screening Program. Possibly there is also not a 'test strategy' among the health system rare disorder test labs, meaning it's probably up to the staff/management which rare disorders they decide to test for, and often it will mean a rare disorder may have only one national lab testing (if at all), and no secured source of the test.

As we move ahead with TMAU testing (and indeed for all rare disorder tests), it would seem a good idea if governments have a 'rare disorder test strategy' which will be a law the national labs must respect.

UK
One possible way to put pressure on UK labs to have a national strategy would be to contact the Parliament Health Commitee. Sometimes they look at cases, perhaps even just for a few hours.

NHS 
An aim would be to order the UK NHS rare disorder labs to have a strategy to make TMAU urine testing available at all times (e.g. not relying on one source) and preferably being available at more than one lab (preferably many/all) to perhaps drive up standards, drive down cost etc.

Direct-testing
An ideal option would be to be able to test direct, but it's unlikely the committee would approve this, as health systems are set up to 'protect the unwell person' or something. In reality this policy creates a monopoly/cartel/regressive system. The committee looked at this system for HIV testing an made direct testing an option (i.e. they looked at how the system affected testing for a serious disorder).

message from Karen, MEBO PR Director, about the UK Health Committee     

Another place to contact regarding a request for a specific policy regarding NHS TMAU testing:
Health Committee - examines policy issues related to the Department of Health and its associated bodies.

Health Committee
House of Commons
London
SW1A 0AA
Telephone: 020 7219 6182

Email: healthcom@parliament.uk

http://www.parliament.uk/business/committees/committees-a-z/commons-select/health-committee/contact-us/

Whether the Sheffield lab test is restored or not, it should be a priority for our community to get a reliable, accurate testing facility established in the UK. The phenomenon of false negatives is not uncommon, and people may need to test more than once. A secure test is needed in any case.

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