[Previous Months][Date Index][Thread Index][Join - Register][Login]
[Message Prev][Message Next][Thread Prev][Thread Next]

Re: [IPk] Serious idea, need feedback

Sure, I know there is going to be "cold water" by the medical people, but at the end of the day nothing in life comes easy.  I know that people will complain that they are too busy or there isn't the demand etc etc but at the end of the day it is up to people like those on this group to start banging the drum and to start ranting and raving.  I'm sorry but at the end of the day the medical profession is there to provide the best quality of life for the individual and insulin pumping in many cases can provide this. 

I feel that the British attitude of sitting back and waiting for something to happen is appalling and it is up to the people here to change this attitude.  By the way of the book, charity, writing to celebs etc and by exploiting the media to the extreme (god knows the media exploits others at every opportunity).

I do feel very strongly about this but I do feel that if there is a united presence who are trying to improve the quality of life for people then it should be possible to succeed.

That's the end of my little rant ;-)

PS: "stretched and busy" this is there job, and by the same token it should also provide them with more time in the future because there patient will be better educated from day one rather than keep going back because they have problems.

Everyone in life is "stretched and busy" its all about extremes and how people cope, as a mother who spends the whole day looking about a baby and she will tell you that she is "stretched and busy" ask a waiter in a restaurant and she will tell you that she is "stretched and busy", but at the end of the day that is life and life is what you make it.

At 13:45 24/05/1999 +0100, you wrote:
This does sound like a really good idea.  The only cold water I would pour on the idea is that regarding the wearing of the pump, you may find it hard to pin down members of the medical profession, not because they're unhelpful (not meaning to offend anyone) but because they are usually so stretched and busy. 
We all know how important something like this is/could be, but there will be some convincing and commitment required - it will be a long, long road. 
Still, on a more positive note, it's definately not impossible.  I'm going to show your emails to Rita on Wednesday when she's down and see what she thinks, it'll be good to get the opinion of someone who is out in the field so as to speak.
Another name for subject - trainee? apprentice?? student???
-----Original Message-----
From: Nathan J Wright <email @ redacted>
To: email @ redacted <email @ redacted>
Date: 22 May 1999 18:55
Subject: [IPk] Serious idea, need feedback

In those famous words .....

"I have a dream" or rather I had a thought whilst NOT sleeping last night.

Pump therapy I believe is going to take off in the next 18 months in the UK, but there is the potential of a repeat of the disasters that happened in the 80's. 

Being part of this group for a while now I have come to realize how much people here know and how great the potential for another 80's disaster is likely.  So last night I started to think about how we (the group) could reduce the risk of this happening.

The risk has already been reduced by the professional approach taken by Disetronic and Minimed and by the handful of others in the medical profession (you know who you are) who are taking a proactive and educated approach to pump therapy.  All this said we still see the problems that can happen when people are not educated correctly (as per the 80's) and who are left to there own devices to get themselves onto the pump regime.

That's my thoughts, now to how "WE" might just be able to solve many of the problems.

Diabetics on pumps generally know more about Pump therapy than the best of the En do's and Nurses, not because we are better or cleverer but because we are connected to it and its is part of our everyday existence, we cannot escape from it so we have to accept it as part of our makeup and part of what makes us the great people we are.

What I would like to do is to create a document that would be given to Nurses, Endo's, GPs and anyone in the medical profession who might come into contact with Diabetics (pump or potential pump user).  The document by its very nature would not be for new pumpers but directed to the people who will be linking people up to the pump and also the people who will be involved in there continuing life over the coming years.

If we got it together I would suggest that the document could be endorsed by Minimed and Disetronic so that they could give it out wherever they saw fit.  Also it would add credibility to the document.  I would understand if the companies if the companies had reservations but I think it would show the medical profession a united front for insulin pumping.

What should the document consist of (this is just my initial thoughts and everyone should add there thoughts) ?  These are just top level headings which would then be broken down into sub sections.

The really clever bit is still to come (well I think it clever).

All the "Subjects" (Endo's, Nurses, Medical People doing this) should go on a pump for a minimum of 2 weeks, but ideally for 3.  Estelle maybe you would like to be the tester for this project ;-).

My using a number of tables and a dice and a bit of math we could simulate BGs over the test period, that way making the pump training for the Subjects as near to real Diabetes as possible.  I will explain this in more detail in future, but what it would mean is that the Subject would have to deal with a simulated BG reading and for all intense and purposes bolus for the amount, all there would be provision for hypos and hypers through the formula.  Simulating the basel to be like a Diabetic is a little more difficult but not impossible (just requires a bit more thought than the last 5 hours so far).  What the subject would do is base the pump on preset meals and situations which would then have an effect on the simulated BG results.

I know this might sound a bit complex but it could be put together quite simply (what am I letting my self in for ;-) and I feel that in 2-3 weeks the Subject really would know what it is like to be Diabetic and going on a pump.

The document and simulation should also deal with things like, how to sleep with a pump (after 4 nights of no sleep because you keep rolling onto it), how to have more intimate times and many other things that pumpers now take for granted but when we all started had to find our feet by ourselves.

The document should also discuss social situations and how people deal with questions and comments about the pump and diabetes in general.

One thing I would point out is that there is no right or wrong answer that the Subjects have to give, it would be designed to make them think so that they can really know what it is like when they are teaching people who are considering pump therapy or who are going through the process.

I am sorry if this email goes on a bit, but these are just the first thought ideas I have had.  For the thing to really work we need to have all the people on the UK group to participate so that we get a broad spectrum of ideas, maybe we should give a profile of the people involved (we can change names if people prefer) so that the Subject would get a real feel for all the types of personalities of pumpers.

One last thing that I have listed above is "DRUGS".  For this we really would need anonymous feedback and thoughts from people across the world.  What I would suggest we do is we create a free email account say "email @ redacted" and we publish the address and password in the relevant diabetic forums.  Then people can point there web browser at the hotmail account and send a completely anonymous email to a predefined email address setup to receive the comments.  This way people would be protected and we would then hopefully get a true picture of how people deal with this side of life.

If I haven't sent you all to sleep by this point, I really would welcome everyones thoughts and ideas.  If people thinks its a good idea then we could start putting something together in the near future.

I look forward to hearing from people with pros and cons either way.  This is not intended for ego or financial or other gain but more to provide future pumpers with Medical people who have a real understanding of what its is like and hopefully a real life experience.

Thanks again.


Natty ---------------------------------------------------------- Insulin Pumpers website http://www.insulin-pumpers.org/ for mail subscription assistance, contact: HELP@insulin-pumpers.org

Natty ---------------------------------------------------------- Insulin Pumpers website http://www.insulin-pumpers.org/ for mail subscription assistance, contact: HELP@insulin-pumpers.org