The Irish Diabetes Online Community

Do you know about the Irish Diabetes Online Community DOC? It's been around for almost 10 years. It’s been amazing! And it’s lead me on the most wonderful and exciting journey.
 
You would think, living in a small country, where every one knows everyone that it would be easy to find other people with diabetes. But, as many of you know, sometimes, diabetes just doesn't come up in conversation and therefore you never know that the person you just met has is living with diabetes too.

THE BEGINNING

In 2007, there were no Irish diabetes blogs or social media groups. Ireland had, still has, only one registered national charity to represent all people with diabetes in Ireland. So, as you can imagine, this national charity struggles to do everything for everybody with diabetes with extremely limited funding. A social media platform to reach out to the diabetes community was too big of a stretch on those resources at that time.

Members of the Diabetes in Ireland Facebook group attending the Libre4All Petition Presentation on 19th April 2018 Photo taken by David Coleman. Copyright.

I had been living with type 1 diabetes for 13 years in 2007 and I'd just moved to a new town. I was really struggling with my diabetes; my HbA1c was climbing, I was burning out and was not coping very well being a mom to a toddler and a 4-year-old in a town where I didn’t know anyone. It was the first time in my life I actual felt completely isolated and I knew I need to connect with other people with type 1 diabetes.

Even though, the newly formed, Clare branch of Diabetes Ireland had set up a local diabetes peer support group, it was a struggle in the beginning and attendance was very low. I was still trying to find ways to reach out to as many people with diabetes in Ireland as possible and began using online forums and google searches. every so often I would type the words “type 1 diabetes” and “Ireland” into google search with zero results. And, then, one day….
 
In 2008, Niamh Downes, a newly diagnosed adult with type 1 diabetes, also went looking for other people with diabetes online. She set up a private Facebook group called “Diabetes in Ireland” and it took off.

DIABETES ONLINE COMMUNITY

By 2010, there were a couple of hundred members in the group with a large population living in, or working in Dublin City (the capital of Ireland). It was only a matter of time before someone would suggest a real life meet up.
 
I lived on the opposite side of the country, so I was no help. But I did remember seeing another post on a different online forum suggesting the same idea and dug it out. This post came from Emma O’Toole (then Battigan). I put the two women in touch with each other. They met up at the end of 2010 and with the help of Diabetes Ireland, set up the Adults Type 1 Diabetic Dublin Support Group in February 2011, with a coexisting Facebook group set up later.

DUBLIN ADULTS WITH TYPE 1 DIABETES GROUP

Emma remembers “being overwhelmed at our first meeting with the amount of people we had, I’m pretty sure there were close to 20 people at it. Back then we were in a small room in Diabetes Ireland in their Gardiner St office. Myself and Niamh were thrilled with the turnout on the night but it got a bit messy with everyone having little chats amongst themselves. Overtime we learned to chair the meetings better and reign people in to focus on the topic at hand.”

Me and Roisin at Diabetes Ireland's head office in 2017

Roisin Keegan took over from Emma and Niamh, “I heard about the support group meetings by complete accident through a friend who volunteered with a Type 1 children's club. I attended my first meeting nearly 4 years ago when the group met up in Diabetes Ireland’s Head Office in Dublin city Centre.

I was obviously nervous not knowing what to expect. Or if anyone would be in similar circumstances as me! I sat at this long table and listened to people exchange stories, tips, frustrations, advise, jokes and information. It almost felt like a relief.... after living a couple of years with the condition and not sure if how felt or what I thought was the same as others or 'normal'. It came like an instant realisation that actually, I'm not the only one! Here's a table full of people of different ages, backgrounds, different cultures, beliefs and different lifestyles, but all with one thing in common. I felt part of the group instantly.

 It was inspiring to look around the table and notice people my age and older who opened up about what they achieved, where they travelled, about their families and professional lives and all the time living with the condition which once used to make me doubt what I could achieve.
 
The meetings became an extra life line which in turn enabled me to feel comfortable with my own condition and like that I've made some amazing friends and learned so much! It's the support and help you can't get in hospitals and is meaningful on so many different levels!”

The Dublin Adults with Type 1 diabetes doesn’t meet at the moment because the are looking to find a new affordable venue. But there are some social meet ups happening all the time.

TODAY'S IRISH DIABETES ONLINE COMMUNITY

Today, there are almost 3,000 members in “Diabetes in Ireland” Facebook group, it includes people with all types of diabetes, friends and family members. There are 1200 members on the Irish parents group and numerous other Irish groups that are regional. It's a regular “whatever you need to know about diabetes” go to group. And there are special interest splinter groups forming all of the time. Here is a complete list of online and offline groups. 
 
I was truly thankful for our well established Irish DOC in 2013, when I found myself at the bottom of a barrel, desperately trying to get out, with my diabetes management. My DOC had no idea that they kept me going and helped me find my way back. That’s the great thing about an online community, you still feel connected even if you are not participating, or if you are only reading the posts. I was still at a point where I couldn’t talk about what was going on with me and it didn’t matter. The DOC was there 24/7 for me.

The growth of the Irish DOC, has given Diabetes Ireland, a direct line to communicate with the community. It means that they are no longer people in a regional office far, far away, reaching only people in those local areas. They can now engage with a much bigger representation of the diabetes community, allowing them to serve us better. Their engagement with social media has offered our community an insight into just how much they work for us.

Photo taken at Thriveabetes 2018 in February. Approximately 300 people in this room: all living with diabetes

The growth of the Irish DOC has also been responsible for making the Thriveabetes conferences happen and people who are newly diagnosed aren't spending as much time in the isolating world of not knowing anyone else with diabetes; they're finding the DOC sooner that I did.
 
In ten short years, we've grown from no presence to almost 10,000 members. I do know that most of the diabetes community in Ireland still doesn’t realise that the Irish DOC exists or are they aware of the many benefits it offers. But we are here, we are loud and I am certainly very proud and grateful to be a part of it.

P.S. There is also a presence on Twitter, Instagram and Snapchat but it's a bit more difficult to find each other in those platforms.
 

Clinical Guidelines for Adults with Type 1 Diabetes Launched

The National Clinical Guidelines for Adults with Type 1 Diabetes were launched by the Minister for Health, Simon Harris on Monday the 25th June 2018. 

I was hugely honoured to be invited to the launch and to be in the company of fellow people with type 1 diabetes who contributed to producing the finished product. I was also impressed by all the speakers who expressed huge commitment to making sure that these guidelines are implemented and that the resources needed are available to all of our diabetes clinics to implement them. 

The National Clinical Guidelines for Adults with Type 1 Diabetes are available to download here. 

WHAT ARE THE NATIONAL CLINICAL GUIDELINES FOR ADULTS WITH TYPE 1 DIABETES AND WHY SO IMPORTANT?

These guidelines and this document provides “evidence-based, practical advice to” all who work in diabetes health care, “on the steps necessary to support adults with type 1 diabetes to live full lives and avoid the acute and long-term complications of both the disease and its treatment.”

This document provides  our diabetes health care teams and us, adults with type 1 diabetes with a guide on the tools and the necessary knowledge we need to be supported on how to successfully self-manage our diabetes.

It’s a “What an Adult with type 1 diabetes needs from their health care team” bible.

- IT'S A FIRST

Up until now, “Ireland has not had clinical guidelines for the management of adult patients with type 1 diabetes.”

We finally have a document that details what care and treatment we should get from our health service as adults with type 1 diabetes. For me, personally, I’ve been waiting a long time for this document, at least eight years, when I first volunteered to take part in an advocacy initiative called “Diabetes Action” started in 2010 by Diabetes Ireland. 

Before now, people with diabetes had no way of finding out if they were receiving the care they needed and clinicians had no guide on what they should be providing. Now we all know and we should have these guidelines on all of our bookshelves to refer to when we needed. 

- SAME CARE EVERYWHERE 

Secondly, As most of you know, diabetes service varies hugely across Ireland. Some people with type 1 diabetes have access to diabetes education, only some have access to dietitians, only some have access to insulin pumps. Right now, what is available to you is determined by where you live or how far you are willing to travel. 

“It is hoped that the publication of this guideline will be a driver to standardise care nationally and as a result patient outcomes will improve and the incidence of diabetes related complications will decrease.”

This document gives clear guidelines on who should be recommended for insulin pump therapy and continuous glucose monitoring instead of the contradictory information that comes from all the different diabetes clinics. 

- MAKES DIABETES EDUCATION A NUMBER 1 PRIORITY 

Diabetes Ireland’s Press Release (full Press Release here) states that “It is accepted that group education for individuals living with type 1 diabetes results in improvement in quality of life, diabetes knowledge and diabetes control and as a result less diabetes complications.”

Yet, “only 409 adults with type 1 diabetes were recorded as having attended a diabetes education course in 2016”. There are approximately 20,000 adult with type 1 diabetes in Ireland. 

“Ms Niamh Downes, a person living with type 1 diabetes and founder of the “Diabetes in Ireland” Facebook community group, said, “Given how important Education is to support self management,  I think it should be “prescribed” rather than “offered”. And that every effort be made to make it accessible for the adult with type 1 diabetes, such as providing a medical certificate for workplaces. People with diabetes are experts in living with Diabetes but need education/support. This should be immediately available as a motivated educated patient will have much better outcomes.”

DETAILS OF THE LAUNCH EVENT

At the launch event, we heard from four speakers who all focused on the need to make the guidelines real life for people with diabetes. 

Our first speaker was Dr. Kevin Moore, endocrinologist and chair of the National Guideline Development group. He spoke about how people with diabetes deserved more from their health service; more support, more education and more empowerment. He said, “Life is harder with type 1 diabetes”, it just is, and “You can’t live with Type 1 diabetes and not have a form of structured education”. And yes I believe, it’s like putting someone in the driver seat of a car without giving them any lessons or a theory test.

He also expressed his deep gratitude to Shane O’Donnell and Kate Gajewska, who were part of the National Guideline Development Group as people with type 1 diabetes. Here's a guest post Shane did for Thriveabetes in 2016.

Kate was a speaker at Thriveabetes 2018 and you will be hearing more from her as she begins recruiting for her PHD study on insulin pump uptake among adults in Ireland. 

Sir David Haslam, chair of the NICE UK (National Institute for Health and Care Excellence) spoke next about the collaboration between the National Guideline Development Group with NICE and a brief history of NICE. He also impressed upon the audience that they could take a minute to enjoy this moment but then to get back to it :-)

“This is the first sentence not the book. Invite me back when you’ve completed the book”. You bet, Sir David!

Our next speaker was Professor Sean Dinneen, Clinical Lead, National Programme for Diabetes. He shared a story of his first year as endocrinologist in Galway, 13 years ago, where he met a young woman with type 1 who was admitted into the hospital who had lived a number of decades with type 1. He said she was in serious trouble and was probably only going to survive if she had a Pancreas/kidney transplant. She’d never had any diabetes education. This week, he met another young newly diagnosed adult with type 1 and he said I want to make sure his story is going to be very different. 

Dr Moore and Professor Dinneen are two of the many people who work in diabetes who carry a torch within the HSE on our behalf and are very much heroes in my eyes. Plus, they can’t say enough about Thriveabetes so I may be a little biased. 

The next speaker was the Minister for Health, Simon Harris. My concern about Minister Harris’s speech was that he would focus on how much diabetes costs the HSE and some shallow words about doing better. And he did a little, but then, he personally endorsed the guidelines and said he was fully committed to seeing them implemented. 

I know we’ve been here before and heard the words of action but I truly believe that this time is different and that because we are all working together, especially the diabetes online community, to make this happen!

SO WHAT’S NEXT

First, our diabetes clinics need more nurses and dietitians for diabetes recruited and then they need training in the delivery of DAFNE. To make this happen the HSE needs to include estimates additional nurses and dietitians in their pre budget submissions for 2019.

This would also be a simple effective option that would bring cost savings almost immediately for the HSE as it would reduce hospital admissions for people with type 1 diabetes through resulting in better informed and more supported adults with type 1 diabetes. 

Once funding is approved recruitment can begin in 2019.

THE MOST IMPORTANT CONVERSATIONS HAPPEN AFTERWARDS - A FreeStyle Libre UPDATE

As always with events of this nature the most important conversations happen afterwards. The launch of the Guidelines was a huge advance in diabetes care and I was anxious to hear that they would become a reality for me. 

But as you all know there was one other issue that weighed heavily on my mind and  that is access to the Freestyle Libre for adults. And despite what a lot of you all think I'm not an extrovert so when Minister Harris looked like he was approaching me I had absolutely no idea what I was going to say!!! You can't imagine the relief when he actually brought it up!!! Yes!! He has been listening and hearing!

Thank you Anna Clarke from Diabetes Ireland for taking this snap.

I was really surprised that he agreed that it was “a no-brainer” and yes those were his words. I shared how having similar technology has helped me manage my diabetes to reinforce the point. Dr. Anna Clarke, who thankfully was standing beside me, very cleverly, mentioned that with the new guidelines recommended checking blood glucose levels “up to 10 times a day in specific circumstances makes the Libre even more cost efficient for adults, yet again.

He seemed very much in agreement and said he would look at what he can do to move on this sooner than the 12 months stated by the HSE. I came away from the discussion very positive that this issue will be resolved soon!

So fingers crossed, keep sharing your diabetes stories, keep emailing your TD's and lets get this across the finish line. 

It's good to know who is on your side. But also to know that those who seem like their are not just haven't heard your story yet.

Diabetes Superhero Power

What is your Diabetes Superhero power? I feel like this is a question that has been asked online before but I've never had an answer for it. However, as I lay awake after yet another night interrupted by diabetes, my answer came to me like a bolt of lightning.

I’ve never had an answer to this question before. 

I was wide awake, very, very early, after the fourth time my low glucose alarm went off on my CGM. At least, I think it was the fourth time - it felt like there were more. 

Anyway, as I lay there wide awake, ridiculously early, (did I mention how early it was already?) I thought “if I had just made a different decision going to bed I may have saved myself a restless night.”

My next thought was, “if only I could have seen into the future.” That’s it!!! That! Is! The superpower I want!!! Diabetes would be so much easier, if I could see into my blood glucose future. 

Here’s why.

My blood glucose was 7.8 mmols last night as I was heading to bed, with no active insulin in my system. I felt it was a good number to go to bed at. But sometimes, my levels can drop during the night and so I asked myself, should I reduce the background insulin on my pump a smidge for a couple of hours to prevent those low glucose alarms?. I decided not to because it was 7:8 with no insulin on board and I was happy. 

(Insert annoying sound for incorrect answer WA-WA. I wish I had known!)

My low glucose alarm vibrated four times during the night, that I can remember, and I know that on three of those occasions I ate some glucose tablets. And sSo now, as I lay wide away very early, thinking about how tired I was, and if only I had known what would’ve happened, I would be well rested. 

Everybody is wise with hindsight but being able to see in to the future would make me wise before sight and diabetes life much easier.

High Glucose Frustration

When my glucose levels are high, the emotions I feel are far and reaching; from mild dispair to total frustration. But the emotion that I have learned to summon to tackle high glucose levels effectively is patience.

There are always a few exceptions but, in general, I find low glucose levels a bit easier to deal with than high glucose levels: just knock back a few glucose tablets and call it done. Of course there are many other frustrations with low glucose such as I may have to lay across the couch for ten minutes to optimise the rate at which perspiration is steaming from my body, but in general, I can move on quickly.

For me, high glucose levels seem to take so much longer to deal with. It takes so, so, so very long for the insulin to work. Sometimes a high glucose can stay around for 6 to 8 hours.  And IT'S SO FRUSTRATING!!!!

At first there’s optimism. It’s just a number, right?!

The number is just a piece of information that I use to manage my diabetes. My approach is to take my correction dose and wait at least 90 to 120 minutes before I assess if I need another dose or not. I don’t always follow this though. Sometimes, I can see that the carbs I’ve eaten are still being converted to glucose and my levels are still climbing so I might take another dose of insulin to pre-empt a blood glucose stalemate after the waiting period.

Then there’s waiting

The first 90 minutes isn’t bad at all. It’s when I check my levels again and the number isn’t going down but it has gone up!!!  And sometimes this can happen, even if I’ve done a pre-emptive correction. So then I take another correction dose of insulin and wait an-other 90 minutes.

Then my Irk-some-ness becomes Frustration

Sometimes a high glucose can stay around for 6 to 8 hours. Sometimes this 6 to 8 to 10 hours is during the night and I have to set alarms to keep check glucose levels.

This is point where I struggle with my patience and I may give into my frustrations with a rage bolus.

A rage bolus is “the act of suffering from a high blood sugar for an extended period of time or for an unknown reason and the retaliatory insulin dose.” From SixUntilMe.com's Diabetes Terms. 

And then two hours later, I have a rebound low glucose!!!

So when people talk about keeping glucose levels as close to normal as possible and make it sound like there is a magic strategy I’m like

Yeah, well, you try to be your own pancreas!

Diabetes Survivor's Guilt

This week, I'm struggling with how society sees me and sees my diabetes and I'm struggling with the whole "what's the point in advocacy" disillusion. I’m calling it Diabetes Survivor's Guilt.

It started with a couple of events on Tuesday that left me beaten down, deflated and with nothing left to fight for the things I need to live and thrive with diabetes. And nothing left to fight the public perception of people with diabetes.

It all started with:

It began with hearing from my peers that my health service discontinued funding for a CGM for all patients who had been using it with no advance notice and no regard for those who rely on it. After the complete shut out for adults with diabetes of the Libre reimbursement scheme, I just thought: I can't do this anymore!!! 

Then, I received an invitation, one I should be excited about because it's diabetes health care moving forward and I'm very honoured to be included. But all I could think about was what’s the point? It won't get funding! It'll sit on a shelf and gather dust like so many others. I predict that two years from now we'll still be asking for the funding for it. Maybe it'll win a Pulitzer for fiction?

Then, there was a tweet from someone with a medical degree, maybe even a bunch of them, that would normally get me all fired up with “You should know better than to spread bad information about diabetes” responses but all I could think was “what’s the point?”

There’s only so many times:

There’s only so many times I can respond to the many, many misinformed tweets/comments with spunk and sass before I start to feel that there are probably five more misinformed people hiding in the shadows, so what's the point?

There’s only so many times I can listen to chatter about diabetes prevention strategies before I start to doubt what I know to be my facts. Maybe I did cause my diabetes?!?! Before I start to believe that I'm a failure because I was diagnosed.

There are only so many times I can hear that I’m costing my health service 10% of its total budget before my response goes from “So! And???” to “I’m sorry I cost so much, please forgive me".

I'm/We're fighting the same ignorance over and over and over. I'm repeating the same information again and again. And I'm/we're getting nowhere.

So What's the point?

What's the point of trying to explain to people that what I need to manage my diabetes is what I need, they are not luxuries.

What's the point in telling people that I didn’t cause my diabetes, that healthy choices won't make me cost less?

What's the point in saying I'm a person with diabetes but I'm not old, not obese, I have all my limbs and both my kidneys, no I'm not what you were expecting, when the images that are displayed to represent diabetes are contrary.

If you tell a person enough times:

If you tell a person enough times that you cost the health service 10% of their entire budget They will start to feel Diabetes Survivors Guilt.

If you tell a person enough times that their diabetes should've been prevented or reversed, you will start to believe it. Despite the truth!

If you tell me all of this enough times, not just with words but with actions also then I will start to believe that I don’t deserve empathy, understanding or treatment and maybe I’m the one who’s misinformed?

I just can't fight it today! But giving up is not an option really is it?

SoMe Support So Wrong

There are so many benefits to being a part of the diabetes online community. It’s so, so, so valuable, informative and, well, supportive. I wouldn’t have survived all these years without it. 

However, it does have a couple of major pitfalls and it can go really, really wrong. Desperately wrong. I’m talking about advising other people to take extra insulin without knowing their full circumstances.

When you think about it, how often do we actually get it right for ourselves? Let alone advise another person, who we don’t know anything about, what insulin to take to correct high glucose levels!!! There is so much to consider!

A number of months back, I came across a post in a private diabetes support group asking for advice on what to do with high glucose levels. Not a single member who commented on the post, and there were many comments, recommended the poster to seek advice from a healthcare professional. 

WELL INTENTIONED BUT MISPLACED MEDICAL ADVICE

We can be so quick to advise someone else without asking more questions about their situation and when an individual takes this well intentioned advice, it doesn’t always end well it. Taking too much insulin and stacking insulin may lead to severe hypos and even hospitalization. And the individual may not be aware of this.

When taking insulin to correct high glucose levels there is so much to consider:

• If this person is newly diagnosed and in the honeymoon period, i.e. still making their own insulin. And this honeymoon period can last up to three years
• When did the person last eat? Was it 30 minutes ago or two hours ago?
• What did the person last eat? Was it high fat, high carb, etc?
• Did the person change their activity routine in anyway? For example, do they normally do some physical activity after eating and on this occasion didn’t.
• Was this person drinking alcohol, specifically, high carb alcohol before testing?

A friend sent me this handy guide for correcting high glucose levels for sick days but it works for all occasions where your glucose levels are high.

Thank you to Eimear for this handy sheet.

 
HUGE RESPONSIBILITY

As members of the diabetes online community,  we have a responsibility to keep each other safe. To not put each other in positions of risk. This is the huge responsibility but one that must be done.

Thankfully, these situations don’t occur often and the many goods continues to outweigh the few negatives.