Type 1 Diabetes Newly Diagnosed - Now What!

I was diagnosed with type 1 diabetes when I was twenty and life as I knew it completely changed forever. I was a student, in my third year living away from home and I had finally moved out of my uncle's house and was doing the whole grown up thing of having a part time job, paying bills, buying and cooking food, doing laundry, etc. 

Know the five T’s

I hadn’t been feeling well for a few weeks but put it down to the unsociable hours of working in a fast food chain. But, when I literally slept for five days straight and still felt tired that just didn’t add up, especially with the fact that I couldn’t drink enough of anything fluid or the running to the bathroom every half hour to empty said fluids. 

Know the five T’s

MY "NOW WHAT?"

I spent nine days in hospital where I learned how to inject insulin and how to use a glucose meter. When I got home I hadn’t a clue what to do next! I had no idea what my future would now look like carrying all of these hypodermic needles around everywhere I went (that's your reminder that my diagnosis was 25 years ago).

Outside, I was calm and focused on what I had to do to take care of myself. Inside, I was in a state of shock, my brain was trying desperately to figure out what my future would look like and what next. 

More than 15 years later, I came across the Australian’s Type 1 Starter Kit: A Guide for Newly Diagnosed Adults with Type 1 Diabetes and I just thought I wish I had this when I was diagnosed. It’s a practical beginner's guide on how to navigate this new life with type 1 diabetes in the first couple of months. 

My inspiration for this blog post comes from the “What to do when you are diagnosed with type 1 diabetes in the first month” section of that guide. 

So here’s my 2018 take on what to do when you are diagnosed with type 1 diabetes in the first month if you live in Ireland.

WITHIN THE FIRST MONTH AFTER DIAGNOSIS 

1.  Have a bit of a freak out BUT breathe! Everything WILL be OK! 

Yes, there is a lot to learn and you’re brain feels like it’s going to explode right now but you will learn it over time. You’re number one objective for these next few weeks is One Day at a Time and if you need to One Hour at a Time. 

Treat the low glucose. Don’t stress too much about the highs but ask your team at what point you should worry about the highs and when to call them. This doses of this new medication called Insulin will time to figure out and adjust and in the first weeks, months you will need guidance from your health care team on how to do this. 

It will get easier as you gain more knowledge!

2. Get a Blood Glucose Meter

You may have been given a blood glucose meter when you were diagnosed and it will go everywhere with you. So, it’s important to find one that works for you! And have a spare. There is going to be times when the batteries run out or it needs charging, or you just went upstairs and don’t feel like going back down the stairs to get your meter.

Glucose meters are free and you can get them from your diabetes clinic, direct from the manufacturer and sometimes from your chemist. There are all sorts of different meters with all sorts of whistles and bells. It is recommended that you change your meter every two years so you’re going to go through a lot of them. 

Some of the glucose meters available in Ireland.

3. Get a Long Term Illness (LTI) Book

Usually, this process has been started for you while you are in hospital but just in case it hasn’t been heres some info. The LTI Book provides all of your diabetes medication and supplies free of charge. It’s a government sponsored scheme. 

 different from a Medical card and a GP services card, which since 2015, you can have in addition to your LTI if you qualify. 

You can get an application form from your local health office or your GP, it needs to be completed by you and your doctor and must be returned to your local health office. Apply through your community welfare officer at your local health centre or download the application form here.

4. Notify the National Driver Licence Service NDLS

If you have Drivers’ License you must notify your local National Driver Licence Service (NDLS), so that it can noted on your driving record. This is required by law.  

You will have to submit a Medical Report Form (D501) completed by your doctor
and apply for a change of personal details. You will need to attend in person at any NDLS centre with the following documentation:

• A valid NDLS medical report form (D501) completed by your doctor
• A completed NDLS application form (D401)
• Proof of your PPSN
• Your current licence

You will then, within a specified timeframe, be issued with a new, updated licence at no extra cost from the NDLS. 

If you have more questions on this please email medicalfitness@rsa.ie or telephone 1890 40 60 40 or www.ndls.ie

Driving with type 1 diabetes does mean that you have to be a little more responsible behind the wheel, for example, "Don't Drive under 5 mmols" and always have fast acting sugar in the car.  The RSA have put together this easy to follow guide on "Driving and Diabetes"  and what those precautions are. It's very much worth a read.

5. Notify your car insurance company 

ASAP! As soon as you can after you have been diagnosed. Car insurance companies CANNOT increase your insurance premium because of your diabetes unless they can show that you, as an individual, are more at risk than you were prior to your diagnosis, which is virtually impossible. However, if you do not inform them that you have diabetes and you make a claim the insurer can invalidate your cover. 

6. Who do you call when you have questions?

When you start to adjust to life with type 1 diabetes you will have questions at every turn for the first couple of weeks. And not all of those questions will occur to you during clinic hours. So if the question can wait, write it down and call your clinic the next day. If the question is urgent see number 7.

7. Find out who you can call in an emergency

Most major public hospitals will have an endocrinologist on call, so you could call and ask for them to be paged. In a serious emergency, call an ambulance. But whatever it is, make sure you have a number in your wallet or programmed into your mobile phone because you can guarantee it will be 3am on a Sunday when you have an urgent dilemma! 

8. What hypo supplies work best for you

Have fast acting glucose everywhere! Some examples of fast acting glucose are Dextrose, Lucozade or Gluco Tablets (from Pharmacies), Sugary drinks such as regular Coke or Orange, Jelly beans or easy to chew sweets, the list goes on. 

P.S. Chocolate is not a good option to treat a hypo as it takes too long for the glucose to kick in. 

Some useful places to have some sort of sugar available: 

• Glove box of your car; 
• In your handbag/backpack,  or back pocket if going out; 
• Desk drawer or locker at work; 
• School locker or pencil case; 
• Beside your bed; 
• At your boyfriend/girlfriend/best mate’s/parent's house. 

Don’t worry - You are not going to use all these supplies in the first week, it’s just that you can generally guarantee that a ‘hypo’ (especially your first) will take you by surprise and happen when you least expect it.

The Morning after the night before... 

9. Might be helpful to Get yourself a medical alert ID. 

Murphy's Law, right - if you have you won't ever need it and if you don't have you will need it. If you do happen to be in need of assistance this will help emergency personnel treat you appropriately.

If this totally freaks you out, there are a couple of other options, (though a well-known bracelet like Medic alert is the most easily recognisable symbol if you get into trouble). Engrave a piece of jewellery you wear all the time with something like ‘Diabetes on Insulin’. Carry a card in your wallet (available if you become a member of Diabetes Ireland). You can also input your medical information into your smartphone.

At the very least, this is the kind of thing that relaxes our stressed-out mammy’s!

10. Cry, if you need to

People might be very quick to tell you that it’s just diabetes or to be grateful that it’s not something worse as a way to "cheer you up". But it's your life that has just been turned upside down and you are desperately trying to learn how to manage it. I cried every night in my bed for about two months because I couldn’t understand why this had happened to me and how much I hated it. I now know that what I was feeling was normal and that I most definitely wasn't the first, the last or the only one to do so. 

Adjusting to life with type 1 diabetes may not be easy and believe me when I say that everything you are feeling is normal. You are not alone. Which leads me on to finding others with diabetes.

11. Find Your Tribe!

Despite what you may have been told at diagnosis it is not rare for an adult to be diagnosed with type 1 diabetes! There are approximately 17,000 adults living with type 1 diabetes in Ireland today and about half of us were diagnosed as adults. 

There are people with diabetes everywhere and thanks to social media they are now easier to find. When you feel ready reach out online in social media to connect with other people with diabetes. 

However, as a newly diagnosed adult, peer support on social media might be overwhelming because of all the information and advice being directed at you by so many. Or maybe this particular group is not the right one for you. There are many, many other options. Here is a list of online and offline diabetes support groups in Ireland to give you an idea of what’s out there. And there are a multitude of diabetes hashtags to follow on Twitter such as #GBDOC, #DSMA, and #OZDoc are just a few. 

DxDublin 2018 Part Two ADVOCACY

As promised last week here is my DXDublin2018 post - part two because there was so much packed into these two days. The “dX” events were created by Abbott Diabetes Care to facilitate the exchange of ideas within the diabetes blogger community hence, Diabetes Community Exchange or “dX”. 

dXDublin was two very full days of workshops and presentations and, of course, exchanging ideas and stories with people living with type 1 diabetes from different countries. So as you can imagine I have a lot to write about and it’s difficult to know where to start. 

For part one with the Libre Update from Abbott see here.

Here's my Disclaimer again:

Abbott Diabetes Care paid for my accommodation, travel expenses and meals for the DxDublin event but did not ask me to blog about the event. All opinions are my own.

FRIDAY - WELCOME TO IRELAND AND DUBLIN

dXDublin Literary Walking Tour with Joe and his assistant... Me :-)

dX events usually begin with a tourist activity to give people a chance to explore the local area before we knuckle down to exchanging ideas. DxDublin began with an Literary Walking Tour of city centre with Joe and an umbrella. Of course, I appointed myself as “Associate Tour guide” and was proud to answer any questions I could while also volunteering random trivia such as this is the place I was working when I was diagnosed. 

Later Friday evening, we had a welcome reception where I was invited to share the Irish diabetes community story so far and a bit more trivia about Ireland. I think Failte Ireland would’ve been proud. We also formally introduced ourselves and our countries to each other. 

We began getting to know each other a little better on the rooftop bar overlooking Dublin city - I have to say it looked amazing as the sun began to set. 

SATURDAY
MASTERCLASS, SOCIAL LISTENING AND ADVOCACY 

Google Welcome

Saturday began with a short walk over to Google's European headquarters for the mornings sessions. We were received with a thousand welcomes: from the stairs in front of the reception desk to the stairs into Google’s community space and the welcome dXDublin bloggers signs everywhere. 

"There are no stranger here; only friends you haven't met yet" WB Yeats

The morning sessions included a Masterclass the “10 Fundamentals of a Creative YouTube strategy” with Vaso Kanistra, from YouTube, followed by, “Mobile Videos Made Easy”, a workshop with on making good quality videos in minutes with Media Management Consultant, Aileen O’Meara. This was very much a beginners course but one I absolutely needed and probably need more of, once I “get over myself”. Yes, I’m one of those people who doesn’t like looking at myself or hearing my own voice. Thankfully Aileen came prepared with a handy handout available from www.aileenomeara.ie

Next up, was one of those simple but eye opening sessions that gave me so much to think about - “7 Steps to Learning about your Audience using Social Listening” by Stephen O’Leary founder of Olytico, a digital data analysis company. He talked about how we can serve our communities better by paying attention to what people are talking about. And you don’t have to be on Twitter to know about what’s trending. Again, for me, this was such a hugely valuable presentation.

It’s also not every day a speaker does so much research into their audience (the first rule of speaking) and their social media that they can buy personalised gifts for three members of our group. 

AND to top it all off - he explained the “There’s one for everybody in the audience” significance!!! I know that most of the other bloggers probably still didn’t get it but it was a proud Irish moment for me. 

SATURDAY AFTERNOON - ADVOCATING AND INFLUENCING

Our afternoon sessions took place at Airfield Farm, “Dublin’s only 38-acre working farm, and food destination”, where we had lunch and a tour of the garden.  

ADVOCATING AND INFLUENCING - Part One

Then, we were introduced to Tiernan Brady, an international campaigner for LGBT rights and equality, Tiernan was involved in the Marriage Equality Campaign in Ireland in 2016, so first we watched a short uplifting video of the campaign.

Tiernan opened with “when we talk about human rights we tend to focus more on the word “rights” and forget about the word “human””. He taught me of the importance of not being an angry campaigner because if I do the people I’m trying to reach will not connect with me. The temptation can be overwhelming to fight with the other side but it’s much more productive to talk to each other. The following will be my mantras from now on: “Anger creates barriers.” “Don’t run down the rabbit holes.” 

Over the last eight years that I have been advocating for people with diabetes the same piece of advise comes up every time and it was a very, very important element in both the Marriage Equally and the Abortion referenda: Share Your Story. Your diabetes story is THE most important item in your advocacy toolbox. The difficult part is learning to tell it in a way that people listen AND hear it. 

It was such a moment of national pride for me when several people in the room told Tiernan how what Ireland had achieved in the Marriage Equality Campaign had influenced their own country in moving forward on this issue too. 

ADVOCATING AND INFLUENCING - Part Two

The next session is what I was leading up to the whole weekend. One and a half hours on our role as influencers and how we can use that for advocacy.This workshop was facilitated by broadcaster and journalist with a special interest in health science and technology, Jonathan McCrea. 

He started by asking us how we see ourselves as influencers? Of course none of us did! But as soon as one person said “I don’t see myself as an influencer” the response from another was “of course you are, look at what you write on your blog and all that you do?” So then we all had to admit that we are actually influencers, even if we’re uncomfortable with the description. It’s odd how we never saw this before. Another #GetOverYourself moment:-)

Then we discussed how this was a huge responsibility for all of us and does affect what we say and do. 

It was at this session that I was asked to share what we, the Irish Diabetes Community, have done so far in our campaign to widen access to the Freestyle Libre Reimbursement campaign. I was supposed to have an Irish Diabetes blogger partner in crime for the weekend but she had to cancel due to unforeseen circumstances at the last minute - I really wished she was there for this session, especially when I spoke about how powerful the Libre4All petition has been in our campaign. Salute to Davina Lyon!

Then the audience was asked questions about access to diabetes supplies and technology in their countries. 

I learned that in Brazil insulin is free but there are huge problems where there isn’t always insulin in the pharmacies when you go to collect your prescription. There is a similar situation in Poland and in addition to this I learned that adults with diabetes are not reimbursed for very much at all. Insulin pumps and test strips are all paid for by adults out of their own pockets. Blood glucose test strips cost approximately .75 cent in euros. 

France has reimbursement for everything at source like Ireland but are slow to include new technology in this. 

In Denmark each clinic has a very small budget for devices such as insulin pumps or CGM’s so only a select few receive them. And people with diabetes have no choice in blood glucose meters at all. 

There are a number of European countries who are, like Ireland, still fighting for Freestyle Libre reimbursement and of course, in the UK there’s a bit of a postcode lottery game going on. 

AND SATURDAY WRAP UP

The last session of the day was short and sweet thankfully as the afternoon sun that was shining in on us was bring the temperature up quite a bit even though all the doors were wide open. It was hot! 

We were then introduced to the Manager for digital platforms at Abbott Diabetes Care, Laura Brander, who gave an excellent presentation on “Connectivity and Digital Health.” and how we can learn from it. 

She also told us that the LibreLink app was launched last February. And the advantage of the LibreLink app means that the reader is on your smartphone and you don’t have to buy it. So you scan with your smartphone, the scan uploads to LibreView in the cloud and is visible LibreLink up.

The LibreLink App also means that people who are visually impaired can now access blood glucose information by activating the voice on their phones.
 

SUNDAY - ABBOTT UPDATE AND FACTORY TOUR

West Manufacturing plant in Blanchardstown, Co. Dublin is Abbott’s manufacturing partner for producing the Freestyle Libre sensors. And we were granted special permission to be allowed to tour the plant and see how the sensors is assembled and packaged. 

The  factory is purpose built to manufacturing the Freestyle Libre and is just about fully complete but is manufacturing at full capacity since June. And yes, there were Sensors, sensors everywhere and just out of reach. 

Libre Papa, Scott House and Libre Papa, Jared Watkins who’ve been working and involved in the development of the Freestyle Libre since it was a twinkle in Abbott’s eyes shared with us how the Libre began, was realized and the amazing uptake that went beyond all expectations. 

You can read more about what the Abbott update included here in my last post
LINK but unfortunately i signed a non-disclosure agreement as a pre condition for the tour so I can’t share any of what I saw in the factory. 

And then it was all the goodbyes to fellow diabetes bloggers from all over the world and lots of new friends. 

dXDublin Diabetes Blogger Conference - Part One

DXDublin on July 13-15 was the biggest and most global dX yet. So proud! There were 30 bloggers from 14 countries and it was a bit like the Eurovision in a sense as we had representatives from Brazil and Canada too. See my disclaimer at the bottom.

I had intended to publish this post in the week following dXDublin but I had to catch up on three days of laundry, pack and go on holiday in two days. So needless to say it did not happen. My holiday was wonderful, thanks for asking ❤️

The “dX” events were created by Abbott Diabetes Care to facilitate the exchange of ideas within the diabetes blogger community hence, Diabetes Community Exchange or “dX”. This was the fourth European dX and my second, having been introduced to dX last year in Amsterdam (dXAmsterdam). I wrote about that experience here

I was beyond  excited when I got this Facebook message about a month before the event:

“Please tell me you have been invited to attend the DxDublin?”

OMG!! OMG! Twenty to thirty fellow diabetes bloggers are coming from all over Europe to see me! And I get to go to a blogger conference without going through an airport!!! 

The visual emblem of dXDublin was a Kaleidoscope - “Small changes to our own lives or to our wider community can have a significant and positive impact.” This is so true.

This dX was two very full days of workshops and presentations and, of course, exchanging ideas and stories with people living with type 1 diabetes from different countries. So as you can imagine I have a lot to write about and it’s difficult to know where to start and it's making for a very long post so I'm publishing it in two parts.

FREESTYLE LIBRE SUPPLY UPDATE FROM ABBOTT

However, I won’t keep you in suspense about the Freestyle Libre Update. I’m really sorry if I, unintentionally, lead people to believe that this was an Irish Libre Reimbursement update - I really didn’t mean to. This is a company update from Abbott regarding increase in the supply of the Libre. 

EXISTING IRISH LIBRE CUSTOMERS

If you haven’t already heard the ordering restrictions to existing Irish Freestyle Libre Self Funding (i.e. paying for your sensors out of your own pocket and not funded through the HSE) customers have been eased this month. You can now order 3 sensors per 25 days. 

NEW LIBRE CUSTOMERS WHO REGISTERED 

New customers who registered on the waiting list are now being processed and should be receiving notification as we speak that they can order their sensors. 

New customers do not have to buy the scanner device as the Freestyle Libre App LibreLink was launched in Ireland for use on smartphones last February and you can scan the sensor with your phone instead of the scanner/reader. 

If you haven't registered to buy the Freestyle Libre and are now considering it, click on this .

REBATES AND REFUNDS OF THE LIBRE COST

If you do self fund your device you can claim a VAT refund AND an Income Tax Refund for your CGM.

• CLAIMING A VAT REFUND

Claim your VAT refund of 23% back from the cost of your Flash/Continuous Glucose Monitor through the “reclaim VAT on aids and appliances for disabled persons” scheme, as diabetes is legally recognised as a disability in order to be included on the Long Term Illness scheme.

This is the link to find out how to claim.

AND

• CLAIMING AN INCOME TAX REFUND MED1 

Claiming your income tax refund of 20% through the Revenue’s MED1 form or online. Find out more here.

*** It’s also worth noting that the Freestyle Libre is suitable for people who are visually impaired, when used with the LibreLink App is an alternative to finger stick blood glucose checking as you can turn on the voice feature on your smartphone to tell you what the reading is. Up until now people who are visually impaired had only one glucose meter option in Ireland. 

Jared Watkin, Senior VP, Abbott Diabetes Care, Stephen Dixon, Sky News, and Scott House Divisional VP Worldwide Operations, Abbott Diabetes Care

GLOBAL SUPPLY OF LIBRE SENSORS MANUFACTURED IN IRELAND 

Two factories in Ireland are responsible for manufacturing the global supply of Libre sensors. West Manufacturing in Blanchardstown, Dublin, which was officially opened in 2016 has only reached full manufacturing capacity last month. Another factory in Donegal is close to completion.  This will improve sensor supply hugely in the coming weeks and months.

Each Libre factory has to be built from scratch and All the machines have to be built specifically. 

In 2015, the Freestyle Libre was available in 3 countries, in 2016, it was available in 22 countries, in 2017 the Libre is available in 42 countries. That is massive growth - approximately 50,000 new users per month before the supply restrictions were put in place and there are currently 800,000 users worldwide. 

FREESTYLE LIBRE REIMBURSEMENT IN IRELAND 

As I sat in the room listening to the story of how the idea for the Libre journeyed from being a twinkle in an eye to how it’s now creating jobs in Ireland, I thought about the irony of most of the Irish diabetes population not having access to the Libre and how I, the only Irish diabetes consumer representative in the room, happened to be from the constituency of the current Minister for Trade, Employment, Business, EU Digital Single Market and Data Protection. Double irony!!

I also thought about how we are probably the only country in the world who can advocate for more access to the Libre, not only on how it will save money for the Health service HSE, but also that we are creating more Irish jobs and create more revenue for the government. Already last week it was announced that Abbott plans to create 500 new jobs in Donegal as it expands this manufacturing facility there.

Keep sending those emails to your local TD's asking when the age restriction will be removed from the Freestyle Libre Reimbursement scheme to make sure that this issue doesn't fade away.

dXDublin Diabetes Blogger Conference - Part Two coming soon

Disclaimer Abbott Diabetes Care paid for my accommodation, travel expenses and meals for the DxDublin event but did not ask me to blog about the event. All opinions are my own.

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.