Why is TB not given the publication it deserves?

[hottchoc]

I live in the U.K. and I’m astounded that TB is not publicised. It’s no wonder people die from TB - we don’t even know it’s out there let alone recognise the symptoms. The doctors tell us it’s pneumonia and we believe them, but is it? All the time the clock ticks and the bacteria grow. It grows to cause tissue distruction, mental health anxiety and anger. Allwhen it could be avoided if only we knew. Surely spending time and money on advertising is cheaper than drugs and a lifetime of worry and anxiety. It’s one of the biggest questions I ask myself every day. Why do doctors not recognise symptoms of TB, and why are we not being told of them? It seems a great loss when there is so much media on breast and lung cancer - we need to follow suit and take a leaf out of their book to help save lives. 1.7million people die each year - surely this is not right?

[HelenC Partner TB Alert]

Hi Hotchoc,

This is a good question. Many people in the UK have never heard of TB or think it was eradicated years ago. I work for the charity TB Alert, and we do work to raise awareness of TB in the UK as far as our funding allows. There is more on our work in the UK, including our UK awareness campaign, The Truth About TB, on our website at: tbalert.org/what-we-do/uk/

At the moment, we are raising awareness about latent TB to support the government's latent TB screening programme, as the majority of the UK's TB cases are a result of reactivation of latent TB. But we have long argued that you can't raise awareness of latent TB (which even fewer people have heard of than active TB) without raising awareness of the active disease. This is why we are now hoping to work with the NHS and Public Health England in 2019 on a national level. Perhaps sign up to our newsletter to follow developments: tbalert.org/contact/subscribe/

Best wishes,

Helen

[hottchoc in reply to HelenC]

You are all doing an AMAZING job! I wish to thank each and every one of you! And I know every single person on here is right behind your work your goals and your tremendous efforts in helping to tackle TB bacteria. Between every one of us, lies support and comfort that you help to provide in giving us strength and unity. Thank you TB Alert x

[Soul01]

Hotchoc I completely agree with you. It seems like it is a hidden condition and with an underlying stigma. I was an inpatient in two hospitals. A simple IGRA blood test could have been carried out instead I had to go privately to get a diagnosis. I had blood tests almost every day for two weeks when in hospital but they didn’t do a TB test. Treatment was delayed by 5 months. Occupational Health told me the hospital wouldn’t have thought to test me because I am Caucasian! Perhaps they should have wondered how a person who hadn’t been to see a doctor for 10 years developed such severe pneumonia, empyema and required lung surgery!

[hottchoc in reply to Soul01]

Hi Soul01, I find it interesting when they pick you out of a bag - Caucation, black, Asian. Country living, urban living... it makes a mockery of what human life is. It makes no difference where we come from or who we are, we all equate to human beings. So why do doctors who study the human body get it so wrong!

[Soul01]

Hotchoc exactly! On a recent trip to A&E one of the staff told me she’d been to a lecture about not judging people. What have I done that requires judgement?!

[Deniseelk]

I am from a very “leafy” , affluent part of the UK, only lived in USA for 3 years ( California) , never travelled abroad for work and had a desk job, never travelled to an at risk country and had my immunisation for TB in my teenage years.... I had latent TB , detected ( thank god) age 48. This was only picked up whilst having standard blood screening tests as I was due to start an immunosuppressive drug for Rheumatoid Disease. I cannot imagine where I would be now if I had not had that screening!!! The TB team I was under at hospital ( after carrying out an extensive questionnaire of my life history to detect where I may have contracted it) were pretty flabbergasted I had it and said it is just so rarely seen in this part of the country. My Rheumatoid team were also surprised and I recall when I was asked to undergo the screening they said just one of the procedures that had to be carried out but they never see somebody with positive results! Surprise!!! However, I must stress I had super care all round from the TB team and my Rheumatology team and glad I can put that unnerving period behind me! I feel very lucky it was picked up.

[hottchoc]

Hi Deneeslk, I don’t understand why professionals are ‘surprised ‘ TB is everywhere and they should know that! This is why they keep on missing it over and over, it makes me feel so cross. I have no words, I can only blame their whole lack of education. They should know, and until they do, unfortunately they are going to keep missing it and doing us all an injustice. It’s so wrong! How can we get help if the professionals blame everything on other conditions?

[Hidden]

PALS told me that my GPs seem to be reflecting a lack of intent to refer due to financial difficulties. I feel it is because they fear retribution due to them prescribing a months worth of the wrong antibiotic then a weeks worth of the correct antibiotic and I myself obtaining an additional three weeks worth of the correct antibiotic due to the fact that my symptoms did not subside until the third week of the course........

We are told not to do what I did but go to the doctor which is pure bull shine in this instance.

Although I was lucky enough to get rid of my infections by self medication which may well have been tubercular I was rebuked for it by three of them all standing close together on the quiet. A conspiracy -yes but proven -no.

If doctors misdiagnose or miss something or do not do what 'was' necessary they will close ranks despite government direction to be candied . Yes doctors tell lies as well just like any other individual . Although they are on a pedestal aren't they, a sort of God above reproach because they never make mistakes? Pie in the sky I'm so sorry to say.