Raising awareness!

[hottchoc]

Since my TB journey I have promised myself I need to somehow help raise awareness and start shouting about TB. I have now managed to team up with public health England to give my first public speech (not hundreds though just a small room!) on what it’s really like to live with TB AND most importantly how TB does not choose our postcodes. It is everywhere and I need that message to get across so we can start protecting ourselves! I’m a bit scared but I feel I have to do this. X

[Dana02]

That is amaZing Hottchoc! Well done! Where will this take place? I would like to get involved if I can help in any way. I am based in London. You are doing a brilliant job and I am sure many people will thank you for spreading the word!

[hottchoc in reply to Dana02]

Thank you so much! Great support from everyone. I’m in Devon x

[Dana02 in reply to hottchoc]

That's great to hear. Good luck with everything.

D

[SadieR]

Hotchoc you are doing something amazing! I hope it went well & you've raised awareness to "Think TB" xxx

[hottchoc]

Yes it went very well thank you, a little nervous, but I got an applause afterwards ! Dana I suppose if you are brave enough, you could offer your local public health England office to go round with them as a TB advocate. I’m sure the would be interested xx

[shelby1983]

Well done hottchoc, absolutely amazing. If my diagnosis has taught me anything it is that the general population really don't know much about TB at all. Even speaking to several well educated friends in relatively high ranking positions within the nhs, revealed a shocking lack of knowledge and misinformation. You can only do good by talking about it, you should be really proud of yourself.

[hottchoc in reply to shelby1983]

Thank you so much! X

[Hidden]

I'm interested in your endeavors and congratulated you before ....... unreserved gratitude to someone like you....... Helen also comes to mind because there are not many folks that are so giving in my view in this world of ours. It is true though that the pen is a powerful 'tool' and if a person kept their nose to the English lessons 'grindstone' then why not use it to good effect?

I have proved that the majority of Doctors do not read previous history notes so please could you state that in your speech because I for one & god knows how many others have suffered quite unnecessarily due to that stupidity. I have been 'labelled' as being diagnosed with Lymphoma (1990) and had radiotherapy (just in case) which I feel stongly afetr reading my medical history & conclude that my supraclavicular lymphadenopathy was Tuberculosis which came back again in 2013 and that diagnosis was based on the 1990 finding which was 99% incorrect. Then there is the story of Mr Percival!

Surely reading a patients medical history should be legislation? It would I feel be a good starter so as to prevent doctors 'barking up the wrong tree'? I hope you succeed in publicizing what is absolutely essential in helping those afflicted with TB. A fanfare of trumpets is in order! I am not joking.

[hottchoc]

That’s very kind of you , yes we can all vouch for wrong doings in the world of TB, it’s like a unique world that only a chosen few know about!

[Hidden]

Did you have that 'get together' with the Authorities? How did it go & was it successful ?

We are watching and hoping that TB awareness will transpire by doctors....... I had to go to my lady GP who I don't see but who sounds kind and giving...... She seems aware that TB 'is coming back' and mentioned 'latent' TB. It is always gratifying that some GP's are aware of the bacteria being 'amongst us' so to speak,.......

I found it amusing however that when I showed her a lump on my knee that has been 'weeping fluid' for three weeks ,she took a photo of it to show another doctor! I have taken two weeks Clarithromycin that stopped my shivers and has reduced my knee to near normal..... I am instructed to see 'them' again if the knee becomes painful !!!!! I already had that in mind & I thought I hope this knee isn't a byproduct of lymph nodes that were very much 'up' in 2013 ! I was scanned two weeks ago & hope that will give some resolutions........ All one can do is hope that our immune systems keep us well and prevent that bug that most certainly is within us latent TB positive folks from flexing it's muscles and harming us.......

The concerning facts are that as we get old what would they advise or rather do if it is discovered that the bacteria has become active again..... Apparently the 'cut off date' to be given antibiotics for TB is now at 65 years of age! It is most annoying to find that 'they' should have paid attention to previous medical history which they most certainly did not and caused them to 'bark up the wrong tree' some 30 years ago.

This is why it should be legislation that all doctors should be made to refer to all previous history medical notes regarding all notifiable diseases.

[hottchoc]

Hi Micklemus. Public Health have invited me again to speak to the TB leads in the South west in a couple of weeks (and stakeholders)! because I have devised something for all GPs helping them and us and saving the NHS money which they are excited to hear about. Everywhere we go we see "if you have had a cough for three weeks or more, see your GP" but when we go nothing happens, because they are left scratching their heads what it could be, its like everything stops there, there is no contingency plan for the next step. So I have devised a plan to change that, so we don't get missed again!