Worst Case Scenario #5 .... with a twist

[Kate]

OK, so this is a bit of a twist from the previous type of WCSs that I have been posing to y'all, but what would you do - or have you done - in the following situation:

It's been a while since you've seen anyone about yoru diabetes except your GP - but today you decide you have a question about something D related that only a diabetes-specialist health professional can really answer. It could be you want to see if you can go on a pump .... Or you have lost your hypo symptoms and are scared ... Or you heard about some research trials that you want to get in on .... it's not life threatening, but whatever it is, you need to chat with either an endocrinologist or maybe a diabetes educator.

You sacked your last endo as they didn't even slightly share your excitement at getting an a1c in single figures for the first time in 10 years. The one before that you look up in the phone book and the number is disconnected - must have retired and moved to Tuscany. The educator you saw at diagnosius was lovely but has moved to Queensland. You've heard about a good endo in your area and look them up, but they have a 3 - 6 month waiting list.

You can't take heaps of time off work for appointments while you shop around seeing every endo/educator under the sun until you find one that has a clue, and a personality.

What to do?

[Kim]

OK, so finding an endo would be tricky... BUT, if your educator was really nice, *hopefully* you would have their mobile number... so give them a call (preferably from someone elses phone haha), and have a chat. Maybe they can give you the advice you need, or at least recommend someone else who's good.
My educator on diagnosis was great, and I still keep in sporadic contact, although she's a long way away...

[Mel]

Good question and sometimes people do have to wait a long time for an appointment. I do know at least one endo in Sydney whose receptionist will ask if it is more than a year since you have seen somebody and they will try to squeeze you in reasonably quickly, I actually think that is a very promising sign of somebody who actually cares and takes d seriously.

Of course, your GP is a good place to start, but tricky if you dont' have a regular GP. If you do have one that knows you a little, it might be a good idea to have a chat to them and say you need to see somebody blah blah and ask if they coudl do anything about organising an earlier appointment for you-very few Drs will not organise a quicker appt at the request of another Dr.

I have no idea about how one would go about getting back into the public system, call up your nearest teaching hospital and ask to speak to a Diabetes Educator I suppose-that sounds kinda scary and confusing even to me.

[Bella]

Well, I had to do this very same thing. My endo did up and leave, he was meant to go to concord, but, I can't track him down. It had been a while since I'd seen anyone. So..... I heard about this great female endo at Westmead, and yes, when I rang for an appointment (for a check up and to ask to go on the pump), there's was a three month waiting list!!!

So I got a referral from my GP, and the GP sent me away for blood tests, she then sent the new endo a copy to put in her file. I had to speak with her before I went to my appointment, so I phoned and asked the receptionist to get the endo to phone me, regarding what steps I needed to take to insure a speedy pump delivery etc.

Guess What...... She actually phoned me that same day. She told me all the steps I had to take, e.g. sort out health fund, do some surfing on the net to find the pump I'd like etc. Then I phoned her back, gave all the pump specifications to the receptionist, and the endo ordered it for me.

So, a few weeks ago I had my appointment, and I was in and out of there in no time, as everything had been already organised.

PS, I'm getting the pump on the 9th October, ........ Yeh!!!

[EmmaC]

I wonder if things wouuld have been so quick if you weren't going on the pump. Endos get a lot of money in fees from your PHI for putting you on the pump, (well mine did, it was something like $4K) and my new endos level of enthusiasm seems to have waned once he got me onto the pump, maybe all my problems are now sorted, ha ha. Maybe I'm too cynical but I do wonder.......

[AdelaideChic]

Ive seen this with other people quite recently.
Starting with a GP is a good step, getting a referral is generally important, and the GP can often suggest a good endo.
If it was an emergency, the hospital would make an endo available. I think thats important to realise. Similarly, if you rang the hosp and said you needed help, I think they would make a reasonably quick appt time and so on.
If you contacted an endo, and said, look i havent been taking care of myself but i want to turn the page, i think they will work you in.
The person in the scenario is worried about finding a good endo. I think if they are able to contact the endo via phone first, that would help the person decide whether it is worth chasing time off work for, and so on.
So for this person, it sounds like the first step is getting a referral, and the second step finding a good one. Asking around, asking the GP, checking RC's recommended endos... are all first steps. Once found an endo to try, i would say ask for a phone call to see if this is a good endo/patient relationship worth persuing.
And hopefully, learn from this time, and realise its not good to forget about the specialist side of diabetes, and to make somewhat regular contact, even if its not quarterly, but at least annually, or whatever fits the persons lifestyle.
Just another point, if the person was worried about losing hypo symptoms, i would say that warrants a bit more of a tough approach, maybe ringing the office and saying i need an appt soon, its really important, or going to the hospital and explaining so that they can arrange something in the public system faster.

[JoJo]

come on here and see if any one knows of any in the area, or check the list of endos.
contact D Australia, or local D centre.
see if GP can refer you to some one (or if they can help with the question).
phone book or internet (don't know if they'd be in there, just a thought).
try and get in contact with an old endo/educator (who've moved/retired ect) and see if they know of any one.
write the question down on paper, stick it on the fridge and wait the 3 months. while waiting search on the internet about it, (eg. if about pump get as much info as possible).

[EmmaC]

If you contacted an endo, and said, look i havent been taking care of myself but i want to turn the page, i think they will work you in.

Does anybody else think this is somewhat unrealistic, I note Mel's comment about one endo's receptionist asking, but all I've seen are Dr's of all sorts with nazis for receptionists who would just say 3 months is the first appointment we have. I have found once you are on a Drs books getting to see them or talk to them is fine so long as you can be a little asertive with the appt nazis, but if you're not an existing patient I dont' think you will find it easy to "try them out" over the phone or get a quick appointment.

[Kate]

Mmm Yeah Emma - I wonder about how you just so simply contact your endo - assumes we all have their home phone numbers! Most often you're dealing with a recpetionist. My endo now has a lovely receptionist but the previous one was nicknamed by me and a few others who went to the same place as Bubbles AKA the scary receptionist on Absolutely Fabulous - seriously she was that bad! I was always relieved when I turned up and I truly had an appointment at the time I had arranged and re-confirmed x3!

[AdelaideChic]

Someone i know needed an endo, i recomended to contact where i was going at the time because they have a number of endos, and she explained her situation (only having just moved to the area 4 months ago, and needing to get things into order), and they worked her in.
I might just say when i said contact an endo, i meant the office, whenever i need to organise appointments and stuff, i call the rooms. Im sure it does depend on the receptionist because of that, if the receptionist isnt happy to look for gaps in the book, then i guess there is minimal chance of getting an appointment.

[Bruno]

This sure is a worst case scenario. All except one of the health care professionals that I've been incontact with thanks to diabetes have been well endowed with clues and personality. The one exception can be excused as being a new graduate, helpful but probably still finding their professional feet (as a dietitian) as they were conservative rather than incorrect in any way. Maybe I just haven't been around long enough to strike a dud doc.
My suggestion is that most of the major hospitals have a diabetes clinic attached, and their waiting lists are probably more flexible than that of specialists. Ask your GP for a referral to the clinic? Nothing to lose...

[Mel]

Maybe I just haven't been around long enough to strike a dud doc.

Maybe it's more to do with the fact that you're an endo's wet dream Mr A1c of 5, Bruno.

Seriously though

Not only is the time frame over which you meet Drs and the number you meet a factor but adult to adult interactions are very different from adult to teenager/ very young adult interactions. This is one area where I see a world of difference between those diagnosed as adults and those diagnosed as kids. In my lifetime journey with diabetes I've come across doctors who have been wonderful and some who, frankly have done more harm than good and I would recommend teenage diabetic girls stay away from them. If I met them now I'm sure I would be empowered to deal with the situation better, but many teenagers/young adults lack such skills.

I have also spoken to quite a few people who tell stories of dropping out of the medical system and finding it very difficult to get back into it, so if it is "indeed a worst case scenario" I know a number of diabetics have found themselves in exactly that situation.

[Kate]

most of the major hospitals have a diabetes clinic attached, and their waiting lists are probably more flexible than that of specialists.

Spoken like a man who has never worked in the health system!! Public hospital outpatient departments in this and most other countries are notoriously inflexible, and my personl and professional experience is in fact the reverse - that a private endo can stay another 15 minutyes to sneak in another patient - many RCers have benefited from a desperate call from myself, on their behalf, to a few Melbourne endos pleading to get them in and room has been foudn on private books.

HOWEVER, we digress ... really keen to hear from people who have had this experience and how on earth you managed to get back into the system - or even just get some specialist d advice, if in fact you did?? Or did you give up and go elsewhere (eg here?!) for the info you were after???

[Be11ydancer]

I was in this situation back when I was still really sick because I had been misdiagnosed as T2. I just explained to the receptionist that my BGL had been above the HI level of my meter for the majority of the past two years and I had developed diabetic dioreah. I then asked her very politely if there was any way that she could help to get me into see the endo within the next two weeks as I had reached desperation point now that my GP had reached the end of his series of theories. She rang the endo and asked if she would stay back or come in early one day in the next couple of weeks and appointment time was aranged that way. I thanked her profusely and turned up to the appointment with a box of choccies to thank her for the trouble. She now can always manage to find a way to squeeze me into the schedule on short notice if I need it.

A couple of days ago my GP arranged an appointment for me with a surgeon who you would normally have to wait six months to see-he did it so well that it looks like I'll be in surgery in the next couple of weeks. As others have mentioned, it might be worth it to ask your GP to help you out. Sometimes it works because both doctors know each other or your GP has referred a few people so they will return a favour so to speak (I think that's how my GP did it this time, or else he made the case sound reeeaaallly interesting).

[carolyn]

Look on the RC list of good endos. Doesn't fix problem of 3-6 month wait but at least you know you will be seeing someone OK.

[Rebecca]

I have been in this situation. Before my sister was diagnosed diabetic as well i would only go to my GP for scrpits and I didnt have an endo or really anyone looking after my diabetes. After she was diagnosed I went to a physian who didnt really know all that much about D. The only good thing he did was write the letter to my PHI company to get my pump. I was lucky as I moved to sydney and found a good endo at westmead and now my D is back under controll.

[Leni]

Not entirely related, but when I was prgenant my endo recommended an obstetrician for me. I rang the obstetrician and was told he was booked out for December (when I was due to give birth). So I rang my endo, my endo rang the obstetrician and the obstetrician rang me and I was in! Sometimes it really is a case of who you know.

I would guess that your GP would probably know an endo, maybe not one you would have picked, but still someone they could call and say "Can you see this person asap?". Same with seeing an educator - if you were really off the rails your GP could get you in.

Some people have suggested, long term, in phoning around and "interviewing" endos before seeing them. I don't know where they are, but I can tell you that no endo I know would do that... MAYBE an endo in private practice (though I doubt it) but definitely not in the public system.

[Kate]

Thanks Leni. Good points. I think we forget sometimes to keep asking and I agree that if you pushed a bit a GP might be able to make a call.

Rebecca - Your story is really interesting. Out o interest, were you in a regional area before you moved to Sydney wfhere it was hard to find an endo? And once you got to Sydney, how did you end up finding your endo that you like?