My chat today is as a diabetic patient and concerns what actually motivates me during medical consultations and what doesn t. Unusually (cos they normally come at the end of a presentation) I m going to start with a question for you excluding those actually currently being hospital in-patients or in A&E - how many diabetics do you actually treat? Don t tell me, keep it to yourself, just keep it in mind. I ll come back to that later. Some years ago I moved house into a new area for me which also meant a change of GP and Hospital. So more of the same, really. At my first ever visit to this new Hospital I was asked about Hypos. This was of interest a couple of years earlier I d had two mega-hypos whilst driving home from work along the M42. Yes - I had tested my blood before starting the car, in Ashby de la Zouch, it was firmly in the 7s both times - yet not 20 minutes later - there I was - up the Armco in the middle! It happened again about 2 months later. I d had to pack up driving for 12 months, so I d had to change my job. I explained this to the doctor. He met this by saying, that if I felt myself going hypo again like that, then I should immediately eat some little pieces of bread, which would apparently sort it. Surely the problem was the fact that I hadn t detected the hypo soon enough not what I did - or didn t - treat it with? (but it wouldn t be with bread!) So I ll ignore that then What a total waste of an afternoon. NOT motivating.
2. I started to wonder if the insulins I was using Humulin I and S were working all that well for me I was having random hypos (and these were in the ones and twos not like 3.9 or something) all over the place usually at the most inopportune moments. I saw a different doctor who was much friendlier and seemed much more with me this time so after a chat, he asked me if I d like to change insulin? Yes please! So I was passed on to a nurse given the job of sorting that out. I was going on to Lantus and Novorapid. I outlined the difficulty I had been finding in adjusting doses to match food - though I d always tried to count my carbs and match doses. The new course, DAFNE, had been bulled up so much in the Diabetes and also the general press in the previous few years and the theory made sense, so obviously a DSN would be well aware of it too. WRONG! To my surprise she told me - that carb counting was totally out of date and absolutely banned, if they ever found I was still trying to do it, then There Would Be Trouble! - so I was to put it out of my mind Immediately!!! I was gobsmacked. Total bollards I thought but not a total waste of my afternoon, in that I should now be a bit nearer to where I wanted to be, cos I now at least I felt that I had insulins which were actually capable of DAFNE. Anyway - let s forget what she said about carb counting, and just have a go. Partially motivated. Partially - NOT.
3. I had all the normal clinic appointments for a couple of years, a different face every time, some of whom were helpful, others of whom weren t. One day there was a new chap in evidence amongst those on duty. He seemed very friendly I hoped I d get him. I did. After the preliminaries he brought up the matter of those driving hypos. Impressive. He d read my file! How much did I think those had affected my overall control did it still scare me? Probably Had I ever considered a pump? No I haven t! aren t they only available if you ve already got mega problems? Apparently not. We then talked about carb counting courses Ooh yes please I ve wanted one ever since I heard they d invented them! They were hoping to get them going very soon, and they d really want people to participate, it was extremely useful on MDI of course but it was even more essential on a pump. He d put my name down for the course and see me as usual in 6 months. WOW! Mega motivating. Can hardly wait I m so excited!
4. Things went a bit wrong after that and hospital appointments kept being cancelled so I had no-one to ask anything really so I did something for myself instead. I went onto the Internet and I Googled diabetes. I found a forum where the people who were answering the questions gave what I assessed to be sensible answers. And so, not without trepidation, I launched myself into their midst and told my story. Nobody before had ever suggested to me before that stress could cause BG fluctuations!! And that was the why answered just like that, simply, within a couple of hours! The precise how to deal with it answer, came a bit later after various suggestions and a fair bit of trial and error but I was helped. I also discovered that there were people coming onto the forum asking what I regarded as simple questions - that I found myself answering. Gosh! So the whole experience was great they helped me and I felt I could give something back both a fulfilling and encouraging experience. Motivating!
5. One of the forum members had discovered the online version of the BERTIE carb counting course and posted the link to the site. We all launched ourselves at it but a few days after I started it I received an invitation to go on the local carb counting course in the January, so I thought it might be best to abandon the online version, to avoid any confusion. I needn t have worried as it turned out, since there seemed to be an amazing similarity! So the course started. Having met each other earlier that day, since she didn t know me at all beforehand, one of the DSNs leading the course asked me at lunchtime who treated my diabetes. I interpreted this to mean, who were my medical advisers, since we live in an outlying part of the area covered by the hospital. So I reeled off the names of my GP, my Diabetes consultant, and also I added, Now I expect I should say - you do too! And she replied What about you Jenny? Don t you have a part to play in your treatment at all? I burst out laughing Well of course I do the biggest one, 24/7 but I took that as read! Then she laughed too and told me what she thought. After those few words I felt entirely comfortable. The two of us weren t strangers and more we would fight the foe together. We had a connection. She went on to tell me that the answer to her question should be ME! I treat MY diabetes and that the most anyone else, medically qualified or not, could do was try and assist me to do it. Quite a long while afterwards I realised that in those few words she d actually done what nobody else had ever done before. What? After I d had it for over 3 decades - she had presented me with the full ownership of MY own diabetes.
7. Hence - my attitude to my treatment changed somewhat. I now firmly believe that all able diabetics are in charge of their own treatment and it s also firmly in our own interest to try and make sure we can give ourselves the right treatment for it at the right time not wait around for someone else to do it for us. I think the medical professions job is mainly to try your best To enable US to do OUR job and thus we can work together to treat ourselves. Now back to that question I asked you at the beginning How many diabetics do you actually treat? There is only one right answer to that, for me. NONE!