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  #21  
Old 12-02-2019, 12:23 PM
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El Aguila El Aguila is offline
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Originally Posted by ExiledStirling View Post
All the best to you as well El Ag and your wife, hope the treatment she has received is succesful.
It has been successful, thank you, now it has to hold - see To view the link you have to Register or Login

And >bump< for this thread and the petition.
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  #22  
Old 12-02-2019, 02:13 PM
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Signed.

All this is very close to my heart, not a life or death situation like this, but we are fighting similar battles with the NHS over my 3 year old’s condition and medication that could really enhance her well being and cognitive abilities and so make a massive difference to her future outlook. Hence our trip to the States last year. America, Canada and Australia all seem so far ahead in administering treatments and undergoing research but here in the U.K. - nothing.

Without going into too much detail, on the recommendation of leading doctors in my daughter’s condition abroad, we are trying her out on a couple of meds but do not have the support of our doctors here. They refuse to monitor her progress and to be honest, it makes an already stressful situation unbearable.

Me and the Mrs are both very cautious by nature, and wouldn’t dream of giving our daughter anything if we felt the risks far outweighed the benefits, but they don’t in this case - far from it. It just seems as finances are not there to trial these drugs, our doctors here just shrug their shoulders and expect you to just accept your child’s lot. Well no f**king way!!

I know it sounds childish and naive, but I can’t help but wonder why I live in a society that is swimming in cash and know how, and doesn’t throw all available money, time, best medical minds and resources at childhood illnesses/cures and treatments that cause so much suffering, instead of wasting money on the absolute greed of a minority of capitalist/business/consumerist obsessed nutters.

Sorry to hijack the thread.

Pub idol - wishing you and your daughter all the very best mate. X

And to you El Aguila
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  #23  
Old 12-02-2019, 04:31 PM
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Originally Posted by bubbs11 View Post
Signed.

All this is very close to my heart, not a life or death situation like this, but we are fighting similar battles with the NHS over my 3 year old’s condition and medication that could really enhance her well being and cognitive abilities and so make a massive difference to her future outlook. Hence our trip to the States last year. America, Canada and Australia all seem so far ahead in administering treatments and undergoing research but here in the U.K. - nothing.

Without going into too much detail, on the recommendation of leading doctors in my daughter’s condition abroad, we are trying her out on a couple of meds but do not have the support of our doctors here. They refuse to monitor her progress and to be honest, it makes an already stressful situation unbearable.

Me and the Mrs are both very cautious by nature, and wouldn’t dream of giving our daughter anything if we felt the risks far outweighed the benefits, but they don’t in this case - far from it. It just seems as finances are not there to trial these drugs, our doctors here just shrug their shoulders and expect you to just accept your child’s lot. Well no f**king way!!

I know it sounds childish and naive, but I can’t help but wonder why I live in a society that is swimming in cash and know how, and doesn’t throw all available money, time, best medical minds and resources at childhood illnesses/cures and treatments that cause so much suffering, instead of wasting money on the absolute greed of a minority of capitalist/business/consumerist obsessed nutters.

Sorry to hijack the thread.

Pub idol - wishing you and your daughter all the very best mate. X

And to you El Aguila
Thanks, mate. All the best to you as well.

I completely agree with the all the above.
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  #24  
Old 12-02-2019, 08:06 PM
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Signed. All the best.
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  #25  
Old 13-02-2019, 12:42 PM
Nth Kent Eagle Nth Kent Eagle is offline
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Real heartfelt best wishes to you all with the issues mentioned above on this thread. Re cystic fibrosis I think this case may be one where the drug company will end up getting the better of the NHS over procurement and that the NHS will blink first and will have to and should find the money to pay it. The short term issue has to be to help the children most in need and provide them with the best medicine but this case has raised very serious issues of morality and monopoly amongst drug companies. At the very least the UK and other government must immediately start to work to fund the development and procurement of alternatives. Pharmaceutical lobbyists and lawyers - yuk.

Last edited by Nth Kent Eagle; 13-02-2019 at 12:46 PM.
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