It has been said many times on this board that it is no good to just have individuals prepped, but that communities - and all the families in them - must be too.
We would like to get patient associations aware of the need to get their members to prep for a pandemic and get them involved in raising awareness. Additionally, we want to enlist their help to add pressure to get health insurers etc to cover the costs of extra prescriptions as part of preparations. General Medicine supply will be as vulnerable to disruption as everything else, and for people with chronic conditions, this could be the difference between life and death for them - apart from the risks presented by a pandemic flu.
For a full rationale see http://tinyurl.com/ylcaqq for fluwiki discussion.
We need volunteers in the US and UK to research the contact information of their local patient groups, and we have made a start on the main thread but we do need more input from other Wiki members if we are to achieve this.
Its a big project, but if divided up between us all, wont take too much effort for any one individual. Please volunteer below!
Is anyone out there willing to put in a little time, however small? Simply pick a disease area - for example lugon is doing diabetes associations in the UK and I am doing cancer groups in the UK, then sign up on THIS PAGE for which country/ disease area you wnat to take, and then make it your responsibility to find the contact information of the patient associations.
We will then collate the information on a wiki page lugon has created or off the board.
Thanks in advance and anticipation.
Just out of curiosity, I want to post a question for everyone.
QUESTION How many people in your life, eg family, close friends, etc people that you care about sufficiently that if they died cos of their drugs running out, and you didn’t ever try to help before even though you knew, would make you unable to forgive yourself for the rest of your life?
anon_22 you’re evil, and you know it.
My reply: Not sure about deaths (D), but surely a really hard time (HT) … let me count … ok, no counting, no names, initials only … T (likely D), M (HT), A (HT), C (HT), C (HT) … I may be lucky or with a small family or my memory fails me.
As the story goes: “President, Sir, there’s a million foreigners about to cross the border!”. And the President says “Names, give me names!”.
The above tinyurl link is easier treated as an internal link: Forum.MobilisationOfPatientGroupsAssociations
The wikipage is here.
I’m not able to pay attention to diabetes and will not have time in the next couple of days. If someone else jumps in I won’t complain. Thanks!
Anon_22 - has a monster been created? Your contributions are so valuable and yet in recent weeks one could be forgiven for thinking that a little narcissism is creeping in? Time to take a step back and reflect maybe?
Thanks Lugon for posting the correct links. I think that this is something that we can take some time - weeks - to complete, because its a big project. So if people are put off becuase of immediate time issues, please dont be. If you can spare about an hour of your time over the course of the next two weeks to do some googling for patient groups associated with condition x, and copy and paste their contact details, its all we need. The idea of this was that between the many of us, we could do something large for preparedness generally.
Patient assoiciations have a lot of links with the media, so with their involvement we can also raise general awareness of what needs to be done in the press, and more effectively than we can with fluwiki alone. Everyone here is tracking pandemic risk and seeking to get those around us better prepared for something most of us beleive is a very real and immediate threat. This is one way to achieve our goals of preparing communities and those around us. Thanks to all who have input so far… Responses don’t have to be instant.
Nom de Plume – at 07:33 Anon_22 - has a monster been created? Your contributions are so valuable and yet in recent weeks one could be forgiven for thinking that a little narcissism is creeping in? Time to take a step back and reflect maybe?
Em, I don’t understand. Can you elaborate? Or, what is the problem?
Nom de Plume,
FYI, just to elaborate on my 01:19 question, to see if I’m answering what you are saying:
That question is a genuine question in and of itself, in addition to the interpretation that lugon placed ie trying to motivate people to take action.
That is, the that you care about sufficiently that if they died cos of their drugs running out, and you didn’t ever try to help before even though you knew, would make you unable to forgive yourself for the rest of your life is an actual ‘definition’ (for want of a better word) that tries to delineate or identify ‘people who mean a lot to you’.
Either way, I still don’t get what’s wrong with that.
Flumonitor - and maybe we could have some temporary email address to send things from.
Re the letter, maybe it’s all “hidden in full view” in your text, and we only have to summarise and adapt to each group.
We need emails, then.
Don’t worry anon_22, enthusiasm and hard work are always offensive to those who lack both.
And in answer to your original question - my family are covered to the best that hoarding and the internet can manage at the moment. :-) Not that we have any major need for drugs at the moment (fingers crossed, touch wood etc).
Since Asthma is a family hobby, I’ll volunteer for that in the uk (unless it’s taken).
Since Asthma is a family hobby, I’ll volunteer for that in the uk (unless it’s taken).
Yay!!
is anyone doing asthma in the US? If not, I’ll do it. If so, I’ll pick something else.
anon_22 I have considered this question before and always thought ‘no, no one in the family is on medication’. And then I read this thread and realized it may be broader than medication - perhaps ‘treatment’. My brother and I are treated for hemochromatosis with regular phlebotomies. I would not want to go more than a few months past my schedule, especially if I was unaware of my ferratin level. I was diagnosed at a young age and am not really at risk of the complications, but I will raise the issue for those diagnosed late in life that are in a much worse position.
I am sorry that I am unable to help with this due to family commitments but can I just say that my mother, who is an insulin dependent diabetic, went to her doctor and requested extra prescriptions for her different types of insulin (which tend to carry a pretty long shelf life if refridgerated) and he was only too pleased to give them to her. In fact he thought that it was an ‘excellent idea’. The reason she gave to her doctor was so that she could carry ‘backup’supplies in case she was ill and couldn’t get to the chemist for a period of time - this may well work with other UK doctors.