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Re: [IPk] Re: Frustrated and fed-up...
I too am at Guy's - with Dr Pickup, who I was sent to because my GP
believed (on the advice of another doctor with whom we both had become
completely fed up) that he was running a pump clinic. Either the
referral request was unclear, or someone misunderstood it, or lied: Guys
at that time was not running a pump clinic, and only started this year
over two years after I was referred).
I never see a nurse - or rather, a nurse takes measurements, blood, etc.
I always see Dr Pickup. Who is your consultant? Can't you fax him and
ask for an appointment?
I am _finally_ getting a pump in April.
Your nurse is right, Guy's won't pay for the pump or support costs, but
(with luck and/or hard work) West Kent will (particularly, if John's
research is anything to go by, if you get your local MP on your side).
And I've got a feeling that there are two or three pumpers in West Kent
I understand your nurse's frustration at not being able to make sense of
your bg readings - I get frustrated at mine, too (and I bet you get
frustrated, too). But someone needs to tell her, fast, that if you
don't understand the pattern, the answer isn't to remove some of the
data! (Looking closely at _some_ of the data is, of course, proper -
e.g. looking comparatively at bedtime vs waking bg levels at different
doses of long acting insulin). I often feel that diabetics need referral
to medical statisticians rather than diabetologists!
In message <001001c0aca4$4a7d17e0$email @ redacted>, Hilly Beattie
<email @ redacted> writes
>A huge big thank you from all who listened and replied...thanks.
>I will take on board what has been said and have been considering "jumping
>ship" to another hospital clinic. My problem is I am with Guy's Hospital and
>they are one of the big teaching hospitals so I keep being told. I am
>considering King's but I don't know if that's just because they are one of
>the consultanty groups who will be doing clinical trials for Islet
>I did meet with a nurse today and it went quite well but I was asked why I
>do so many blood tests and Ketone tests a day and wasn't I getting bogged
>down with it all (i do on average 4-6 blood tests and 2-4 ketone tests) She
>even asked me to do fewer tests as there was too much information for her to
>take in. The only reason I do so many (and feel happier for it) is to try
>and show these people that no matter what I try, my bloods stay out of
>control. Also if I have any chance of a pump, don't I need to show all my
>The reason I am trying to link in with the nurse is that I'm not ill enough
>to go to hospital but not well enough to hold down my work, life etc. I am
>not Ketoacidic but run with sugars up to 20-odd most days but I feel if I
>return to normal "life" then I will become sicker as my time will be on
>other things, like working. At least that's what has always happened in the
>I was also told by Guy's that even if they supported me for a pump i would
>have to pay for it all myself as the funding comes from West Kent Authority
>and it would cost me at least #6,000 for the first year, with the education
>and training costs included. Now I am confused...
>Anyway I still feel better to day (ignoring the unexplained 17.0 reading I
>just had!!) and I am just glad that someone saw me today.
>----- Original Message -----
>From: "John Neale" <email @ redacted>
>To: <email @ redacted>
>Sent: Tuesday, March 13, 2001 10:33 AM
>Subject: [IPk] Re: Frustrated and fed-up...
>> >...and needed to tell someone about a phone call I just had with a nurse
>> >mmy diabetes clinic and I hope this is okay to use this site for such a
>> >but I have no one else to de-stress with.
>> Hi Hilly -
>> You rant here as much as you need to. That's fine by me :-)
>> I think that what you are reporting is absolutely disgraceful! If you are
>> making the effort, and your treatment plan is not working, then something
>> has to change. It sounds to me as if the hospital is failing you in a
>> way. Short of disbanding the clinic and reforming it again, your best bet
>> may be to up sticks and find another diabetes clinic, where they will take
>> you seriously. Speak to your GP. And while you are doing it, you might as
>> well find one that is familiar with pump therapy, because not all clinics
>> are. Contact INPUT (tel 01590 677911) - John Davis will be able to give
>> the name of pump clinics near you.
>> Read some interesting blurb about gastroparesis in the JDF International
>> magazine yesterday - it seems that Viagra (tm) may have a role to play in
>> treating gastroparesis, not just male impotence. They also suggest that
>> of people with diabetes may get gastroparesis, and the current treatmens
>> are not very effective. Gastroparesis is where the stomach fails to empty
>> properly, leaving the food stuck in your stomach for a long time. Pumps
>> help since you can slow down the release of a meal bolus as much as you
>> need using the square wave bolus. And in turn, better bg control reduces
>> the gastroparesis, but gastro makes it very hard to get good bg's. Hard
>> cycle to break.
>> mailto:email @ redacted
>> for HELP or to subscribe/unsubscribe, contact: HELP@insulin-pumpers.org
>> help SUPPORT Insulin Pumpers http://www.insulin-pumpers.org/donate.shtml
>for HELP or to subscribe/unsubscribe, contact: HELP@insulin-pumpers.org
>help SUPPORT Insulin Pumpers http://www.insulin-pumpers.org/donate.shtml
email @ redacted
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for HELP or to subscribe/unsubscribe, contact: HELP@insulin-pumpers.org
help SUPPORT Insulin Pumpers http://www.insulin-pumpers.org/donate.shtml