Email campaign : NHS CEO Simon Stevens re meta-bo

Re Email Campaign to UK NHS Chief Executive SIMON STEVENS.
To inform him of METABOLIC BODY/BREATH MALODOR and how the NHS could help.

A recent email campaign to inform Simon Stevens of metabolic body/breath malodor and inform him how the England NHS could help was undertaken recently.

Mr Stevens NHS web page details have since been removed.
( NHS profile link )

Reply from :
Celia Ingham Clark (profile link ) ( twitter )
Medical Director for Clinical Effectiveness at NHS England

The emails were forwarded to Celia Ingham Clark.
Here is her reply :

Thank you for your recent correspondence addressed to Simon Stevens, concerning metabolic body/breath malodour. I am responding on Simon’s behalf. In responding I have taken advice from the Deputy Chief Scientific Officer, Fiona Carragher, and from Dr Robin Lachmann who chairs our Clinical Reference Group on Metabolic Disorders. Both of these colleagues have relevant expertise and experience in metabolic disorders.
I understand that in some patients with abnormal body odour, the odour is due to elevated levels of trimethylamine (trimethylaminuria). This can either be caused by inherited genetic variants of the FMO3 enzyme or other, poorly understood, factors which reduce FMO3 enzyme activity. FMO3 is the liver enzyme that breaks down trimethylamine that is found in food. I gather that affected individuals have a distinctive, fishy body odour that can cause significant emotional and psychological distress to them. It must be a very distressing condition to live with.
Treatment is typically with a special diet +/- antibiotics to try and reduce the amount of trimethylamine entering the body from the gut. This treatment is normally effective, but is arduous to follow. At present there is no cure, but advances in genetic testing and gene therapy may mean that in future years there is hope for definitive treatment.
The single diagnostic testing centre in Sheffield carries out hundreds of tests each year for trimethylaminuria for patients from the whole of England. They changed their assay two years ago in order to revalidate and improve it. Previously a number of patients who had a positive result on the urine test were then shown NOT to have the FMO3 enzyme abnormality when they had a genetic test. The newer urine test is much more accurate.
Although most patients who complain of abnormal body odour have normal trimethylamine levels, and hence do not have trimethylaminuria, there are currently no other validated assays available to test for other metabolites which might be responsible.
There is information about fish odour syndrome on the public-facing NHS website, and this links to patient forums, as I expect you are aware. Thank you very much for bringing the condition to my attention. It must be frustrating to have symptoms for which the underlying cause and treatment have not been identified.
I hope that you find the information above helpful.
Yours sincerely,
Celia Ingham Clark
Medical Director for Clinical Effectiveness NHS England 

Reaction to reply

1. It's nice they at least researched the condition and got (tame) advice.
2. It's not useful advice.
3. Government agencies must be bound to reply to emails.
4. Many may have got this reply. That's ok, as it shows power in numbers.

It shows PERSONAL EMAILs to influential people, EMAIL CAMPAIGNS, and PETITIONS are worthwhile though may not feel like it.

It is vital that the community make INFLUENTIAL PEOPLE ./ AGENCIES aware of METABOLIC BODY/BREATH MALODOR, as they will not have heard of it and are the ones who make changes happen. EXTERNAL networking is the way forward.

A follow up email has been sent to Celia, including asking for a meeting.
We will keep you updated.

Other links :
Fiona Carragher NHS profile
Dr Robin Lachmann NHS profile

META-BO Help ratings :

Simon Stevens :
Will pass to another dept.
Hides email address.

Celia Ingham Clark :
Nice standard reply.
Looked into it.
But very limited help this time.
Maybe will see us in meeting ?

Fiona Carragher :
Unknown.
Has 'metabolic testing' background.

Dr Robin Lachmann :
Ptobably happy with status quo and new 'stricter' TMAU test ?

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