DIABETES, so what do YOU do?

tbh

Little Mickey wrote: »

A little bit out of the way but if it's only for one day (?) I could ask at my next appointment if they can organise one up there for me.
The little bit of reading I've done on it seems that indeed it seems to be a useful course to take part in.
Thanks for the info!

5 days, im afraid.

graflynn

Little Mickey wrote: »

A little bit out of the way but if it's only for one day (?) I could ask at my next appointment if they can organise one up there for me.
The little bit of reading I've done on it seems that indeed it seems to be a useful course to take part in.
Thanks for the info!

You are only eligible to do it if you are a patient in the clinic that runs it. There are 5 centres that run DAFNE in Ireland; Galway, St. Lukes in Kilkenny, Beaumont, St. Colmcille's, & St. Vincents in Dublin.

You can find out more on http://www.dafne.uk.com/387.html

I know Galway is out of the way for you but back in the early days before there were diabetes clinics everywhere I had to travel from Offaly to Dublin.

CathyMoran

DAFNE seems like a great idea but I never have enough time to do it, do they have daycare/creches for children?

lucernarian

Little Mickey wrote: »

My own opinion is that the most of them in the clinic are chancers.

I'm type 1 for 15yrs and I've been involved in changing jobs recently before finally being let go so my levels were all over the place because of my lifestyle changes.
After reviewing my stats in the clinic recently they told me to lower my morning dose and raise my evening dose. When I started on this routine it was worse than previous so I changed back to the way I was. At the next appointment I told them the situation and they decided to raise my morning dose and lower my evening dose, the complete opposite to what I was told the first time. This improved my levels somewhat but I decided to try and perfect myself and I've now worked out reasonable doses, not brilliant control but the best I can manage I reckon.
So they call themselves specialists? I prefer to use the word chancers. Like you and me they know about the illness but they're only guessing based on your lifestlye, bmi, etc. You can do the exact same guessing yourself.
Going to the clinic for me is really now just keeping on the, for want of better words, "good side" for if more serious things occur.

As an engineer in say electronics or mechanics things have to be done specific for things to work, an electronic device will not function when the circuit is has an incorrect component for example - you have to know your stuff when you are working in a field like that. You won't succeed or keep a job if you take shortcuts here.
Yet thier pay is huge by comparison and they can guess all they wan't, afterall the adverse effects will be on you, not customers who they are suppling goods to.

Rant over, just voicing my opinion.

Been in two different clinics since I've been diagnosed and I've found entirely the same thing. Most consultants and especially SHOs and registrars in the two outpatient clinics I've experienced go through the same routine of asking for blood sugar recordings, looking for dodgy ones, seeing if there is a pattern and then telling me to increase/decrease a certain dose at one time of the day. This information is entirely useless as I "carb count" and every dose I take varies with what I eat. And the amount of carbs per unit insulin will vary depending on time of day, expected exercise and to what extent do I want to ensure no hypos, etc. The list goes on. So how can a doctor ask me to apply a blanket adjustment to one time of the day is beyond me (except for the basal part of my therapy). That experience is personal and I don't think it applies to others really.

I have rarely found any sort of personalised advice and this is from one or two of the nurses I've dealt with. In comparison, I usually see a doctor who I've never spoken to before and with outpatient clinics as they are, there's simply not enough time to give my whole life(style) story. The doctor's consultation is only useful to me now as the place where I hear blood test results, especially the HbA1c and also where my LTI prescription is renewed.

Nurses and dieticians can really offer useful advice on how to handle diabetes (type 1 in my case) as it's less formal and not so structured to simply taking effectively a "progress report" of the patient's blood sugar control. They don't have a timetable, more or less, to keep an eye on when talking to you. This lets you discuss particularly tricky problems.

I also think you'd benefit greatly from the DAFNE program, it puts more effective control in your hands. And you will be able to get more out of doctors' consultations too. A pity that most hospitals don't offer it. At this stage, I manage my diabetes quite similarly to the DAFNE way of doing it, but probably not as successfully... My A1cs have been low to mid 7%s for the past 3 years.

Little Mickey

To_be_confirmed wrote: »

Been in two different clinics since I've been diagnosed and I've found entirely the same thing. Most consultants and especially SHOs and registrars in the two outpatient clinics I've experienced go through the same routine of asking for blood sugar recordings, looking for dodgy ones, seeing if there is a pattern and then telling me to increase/decrease a certain dose at one time of the day. This information is entirely useless as I "carb count" and every dose I take varies with what I eat. And the amount of carbs per unit insulin will vary depending on time of day, expected exercise and to what extent do I want to ensure no hypos, etc. The list goes on. So how can a doctor ask me to apply a blanket adjustment to one time of the day is beyond me (except for the basal part of my therapy). That experience is personal and I don't think it applies to others really.

I have rarely found any sort of personalised advice and this is from one or two of the nurses I've dealt with. In comparison, I usually see a doctor who I've never spoken to before and with outpatient clinics as they are, there's simply not enough time to give my whole life(style) story. The doctor's consultation is only useful to me now as the place where I hear blood test results, especially the HbA1c and also where my LTI prescription is renewed.

Nurses and dieticians can really offer useful advice on how to handle diabetes (type 1 in my case) as it's less formal and not so structured to simply taking effectively a "progress report" of the patient's blood sugar control. They don't have a timetable, more or less, to keep an eye on when talking to you. This lets you discuss particularly tricky problems.

I also think you'd benefit greatly from the DAFNE program, it puts more effective control in your hands. And you will be able to get more out of doctors' consultations too. A pity that most hospitals don't offer it. At this stage, I manage my diabetes quite similarly to the DAFNE way of doing it, but probably not as successfully... My A1cs have been low to mid 7%s for the past 3 years.

+1
You've nailed it. You have put across what I am saying in a more detailed fashion, you may be at the same clinic as me for that matter. What you have described is 99.9% the same as for me. To add to that, I'd say I can count on a few fingers the amount of times that I've met the senior "consultant" in there in the last 5 or 6 yrs.

I will ask about that course the next time just in case they can organise something.

eilo1

can i asked where you both attend??
Im just curious coz your clinics sound so awful!!!!!!
its such a shame this can happen!!!

Little Mickey

eilo1 wrote: »

can i asked where you both attend??
Im just curious coz your clinics sound so awful!!!!!!
its such a shame this can happen!!!

Mid west regional hospital for me.

lucernarian

It used to be the Lourdes hospital, Drogheda which was pretty poor. There wasn't even an endochronologist based there until a good while after I was diagnosed, and then only once per week. I don't know if it's still the case. I've been in St. James for nearly 4 years now and it's much better overall, though the consultants/doctors are worse if anything. I hear great things both from people within the system (doctors, trainees etc) and from members of the public about Prof. Nolan but I think I've never had an appointment with the man.

Speaking of which, appointments every 6 months are no way to keep a regular eye on even A1Cs let alone daily blood sugar control. I don't think any hospital public outpatient in this country would experience much different as even the best doctors (of which I believe Professor Nolan is one) can only do so much in less than an hour per year.

Unfortunately, I simply can't afford to go privately and have more frequent appointments though I do arrange another 2 A1C tests with a GP per year so I have that every 3 months at least. And even at that, they're highly reflective of the previous 6 weeks even though theoretically they reflect control over ~120 days. For me anyway.

robinph

I'd view the 6 monthly/ yearly checkups with a the consultant/ prof/ senior diabetes person of some description as just a check to see if there is anything else missed during the year that the rest of your care team couldn't deal with or that you'd not brought up with them for some reason. If there was ever any issue during the rest of the year then that gets dealt with by the nurse, who then moves the issues up the chain of command if needed, but they are available much more often than every 6 months/ or year.

If you have the inclination you should be in contact with the specialist nurses throughout the year if you need them. Maybe the visit to the consultant is just actually an annual reminder that there is a whole bunch of people there available if you are willing to make use of them.