Thirty years of diabetes means thirty years of being a diabetes healthcare “service user”. In my previous 30 years of diabetes post, I focused on how my diabetes management has changed significantly. This post is about my journey through healthcare, which includes experiences with public and private services to find the care that I needed and how care has changed in those three decades. I’ve changed my care a lot because a) I moved a couple of times, and b) it took me some time to find the care I needed. All but four of those thirty years were accessing care through the Irish system.
I was diagnosed through an Accident and Emergency admission to Portiuncula Hospital in Ballinasloe, Co. Galway, in 1993. At the time, they had one diabetes nurse specialist on staff one day per week, and as far as I’m aware, they didn’t have an endocrinologist. So they referred me to a Young Adult diabetes clinic in a Dublin hospital for my care.
You never forget your first clinic.
During the seven years I attended this clinic, I never knew any of the nurses' names; I saw the endocrinologist once a year, and it seemed like it was a different one each time. My mission while attending these clinic appointments was to get in and out as fast as possible.
Some of the memorable moments from those clinic days included:
Being told that, what I realised many years later was, my HbA1c was good, which meant nothing to me as I didn’t know what it was—no follow-up explanation.
Another person told me my current insulin regimen was “archaic” as if I chose it. Sure, I hadn’t a clue there were different types of insulins back in 1999.
Yes, I made up numbers in my blood glucose diary, and I’m not ashamed because I avoided the follow-up interrogation.
Having dual retinopathy and diabetes clinic appointments at the same time. But I really don’t think I knew why my eyes were being checked.
So I really don’t have many fond memories of my first diabetes clinic. However, I do know that it is a much better place to be now and hear some wonderful experiences from our community.
In 2002, my husband and I decided to immigrate to America, so I had to find new care. I didn’t even get a chance to wonder where I would find a new clinic because he had already contacted a former work colleague who had type 1 diabetes if she had any recommendations. I honestly still don’t know where I would have found that information because this was before any social media platforms existed.
I finally had the opportunity to meet this work colleague in the Summer of 2022, and two weeks later, she rescued me again when I had to make a sudden return trip to the States and grabbed what I thought was an entire vial of insulin, but it wasn’t.
A Clinic from a Different World
2002 Minnesota, USA
This endocrinologist was the making of me and my diabetes. Initially, I just showed up at the appointments and tried to answer all his questions; I was puzzled when he never failed to ask me if I was still studying/working. I now know that he was very much taking note of what my lifestyle might be so that he could make more informed suggestions with my care.
He quick-marched me to a Certified Diabetes Educator CDE when I said we were thinking about starting a family, and this is where I learned the basics of carb counting and introduced a lot of the why of diabetes. My life became a lot more flexible, and I felt I could manage my diabetes so much better than I had been trying to.
Not only did this endocrinologist change my diabetes world, but he also visited me in the hospital after my baby was born to update my treatment plan; but also, secretly, he came so he could hold the baby, saying it was one of the perks of the job. ❤️
Then it came time to move home and to the unknown. How had diabetes care advanced in Ireland in four years? The answer was not much at all.
Home Again: Going back in time
2006 Private Care
Moving home to the opposite side of the country and a new town meant all new care from a GP to a diabetes team. It was further complicated by getting pregnant with number two almost immediately upon setting foot on Irish soil 😬 Oops! I had to rush to get a new GP and endocrinologist. We had good health insurance, so we went private for care this time based on the recommendations of the new GP. This was the start of a number of rocky years of unsupportive care, and I was really struggling with my diabetes. So there are very few good memories here.
This endocrinologist saw me through my second pregnancy, and then I fired them. I felt I was not listened to and talked down to. I thought it was odd in the beginning that the midwife would insist that I make sure I didn’t leave the endo's office, which was a separate appointment from the nurse's appointments, without having blood drawn for an HbA1c test. They also seemed offended when they discovered I was using a sliding scale, asking me abruptly, “Who taught me to use it?”. When I raised concerns about the consistently upward pattern my HbA1c was taking ↗️↗️, the response was “It’s fine” until it wasn’t, and then it seemed like it was a problem that came out of nowhere instead of something I saw coming. I also raised concerns about taking my insulin before meals and struggling to finish my meals because of all the hypo-snacking I was doing between meals. I suggested taking half my insulin before my dinner and half after if I could finish, but this was deemed ridiculous. I went to this endocrinologist once after my son was born at a whopping 11 pound 6 ounces and took great pleasure in telling the Secretary that, no, I would not like to make another appointment.
2007 Public Diabetes Clinic
I tried private and expensive, now I thought, let’s try free and local. My gosh, this was even worse, but this experience forced me to look for help for my diabetes outside of the medical community and find peer support. The second last appointment I had at this clinic was the one where I got outside afterwards, and the tears just streamed down my face. First, I was told to get out and walk because I still had my baby weight, even though I was so exhausted from having two small ones, no family support nearby, and my diabetes was unmanageable to boot. Then another staff member went two steps further, suggesting that I buy a double buggy (something we couldn’t afford) and again get out walking to lose weight. But the last straw was when they, without looking at my glucose diary, increased my long-acting insulin based on my lab’s fasting glucose.
In those days, I wasn’t confident enough to speak up for myself, but I did submit a formal complaint and received a phone call from the consultant who usually ran the clinic (anonymous complaints, my eye). Apparently, the doctor I had on the day was a locum.
I’ve alluded to this experience many times in many talks because while those tears streamed down my face, I vowed to find other people with diabetes because I didn’t accept that there wasn’t better care available somewhere. The Clare Diabetes support group was born from this distress, and Diabetes Ireland replied to my letter with two alternative options for my care, both of which were the right fit for me.
Finding the Care that Fit
My next experience of care was back in the private system, and I would have stayed there forever had my new endo not relocated to another part of the country. This person saw me through moving to an insulin pump even though they couldn’t provide it to me and saw me through two more pregnancies and their miscarriages. They treated me like an equal partner in my care and shared information they learned from international medical conferences. What's more, this endocrinologist was based in my hospital of diagnosis, Ballinasloe and twenty minutes from where my mother lived. She was thrilled to be asked to meet me at the hospital to watch her grandchildren while I was at my appointment.
In 2014 this endo announced that they were moving, but because of my support group, I already knew where I was going next, and that was back to a public clinic but one that was resourced to support me with my insulin pump and provided specialist education. I’ve been there ever since. Happily!
My health is my wealth, and thankfully, we have been able to provide me with what I needed to prioritise my diabetes health. I was prepared to travel further if I needed to access the care that fit, but I am grateful that my travel time to the clinic is only one hour. Kerri Sparling from SixUntiMe once wrote that if you feel like you have to lie to your doctor, then it’s time for a new one, and I think knowing that I could choose helped me find the right care for me.
