Diabetes Offline Support is Important too

“Diabetes is so easy to manage these days.” “Sure he’ll grow out of it by the time he’s 18.” “Is he allowed to eat that??!" and "Oh yeah, my gran has that from eating too much sugar!"

Just some of the things people have said to me when talking about Cayden’s diagnosis for the first time. These statements used to drive me crazy in the early days of diagnosis. I know that people mean well and didn’t make these statements to hurt or offend, they’re just lucky enough to not have to know what type 1 diabetes really is. I was once one of those people.  My name is Pam Kavanagh.  My son Cayden was diagnosed with type 1 diabetes on 12th February, aged 7.  Myself and Cayden attended our first Thriveabetes event in October 2016 and I wanted to share what that experience was like for us and why we are now helping to raise much needed funds to ensure the 2018 conference goes ahead.

FIRST WEEK OF DIAGNOSIS

the kavanagh family

Anyone who has a child with Type 1 diabetes knows what those first days in hospital are like. That day, when you're told your child has diabetes. It’s a rollercoaster of emotion.  You’re in a bubble not quite taking in the enormity of it and what is involved in managing the condition.

Seeing your child take their first ever injection, that’s something I’ll never forget.  How can I do that to him every day?  Then you’re shown how to draw up insulin in a syringe and the best methods of injecting. Four is the floor, you eat X amount of carb for X amount of insulin, and so on… Yeah sure it didn’t sound too bad, pretty straight forward enough until BOOM! -  you’re sent home to start the journey on your own and you very quickly realise what managing diabetes entails and that life would never be the same again.

Guilt set in when I looked back at pictures in the weeks leading up to his diagnosis, why didn’t I realise the seriousness of it sooner.  It felt to me like I was taking home a newborn baby for the very first time only without the joy and excitement.

SUPPORT – WHO TO TURN TO

Previously, in times of trouble or strife, the first people I would turn to were my family and close friends but this time it was different. They couldn’t help in a lot of areas as they didn’t understand.  My husband and I felt lost and alone.

I spent hours on Google everyday looking up information, advice, complications, cures, gadgets, technology and each night I grew more fearful and wished I could take his diabetes from him.  Dr Google turned into Dr Fear. I bought every book there was and watched tons of videos.  Information overload.  This created another struggle as there was so much conflicting information out there regarding optimal blood sugar levels, what he should or should not be eating, what we needed to do to avoid long term complications and so on.

Some of what I read also contradicted what we were taught in the hospital too so I felt at a complete loss, who should I listen to.  I knew I had to connect with other parents living in Ireland dealing with the same struggles as us.

FINDING THE DIABETES ONLINE COMMUNITY & THRIVEABETES

A few weeks after diagnosis, I was getting my own bloods done in a hospital and got chatting to the nurse and her daughter had diabetes.  She recommended I join a closed Facebook group called Parents of children & teens with Type 1 Diabetes. It was in this group that I saw a post about Thriveabetes, a one day conference in Ireland for adults, children & families living with Type 1.  I got in touch with them straight away looking for more information and received a really lovely email from Grainne, one of the co-founders.

MY THRIVEABETES CONFERENCE EXPERIENCE

Thriveabetes 2016 took place at Kilashee Hotel, Naas, Co. Kildare. There was such a great atmosphere in the venue and it was lovely meeting with people I’d chatted to online.  It's hard to describe what it felt like being surrounded by other people who were living with Type 1. In simple terms, the conference felt like a great big bear hug. I was in a room with people that had my back.  I could express my fears and anxieties without fear of being judged or freaking anyone out.

The workshops were split into different groups; Adults with type 1 diabetes were in one room, parents/grandparents of children with Type 1 in another and then three rooms for the children, divided up by age.

The speakers were amazing, in particular Joe Solowiejczyk (or Joe Solo as he's more commonly known) and Gary Scheiner.  Both certified diabetes educators living with type 1 diabetes. Gary has had type 1 for more than 30 years and Joe 50 years.  To see someone standing before your very eyes living well with diabetes for that long made me take a deep breath and smile, I honestly didn’t believe it was possible.  They shared some really great tips for managing diabetes on both a physical and phycological level.

Thriveabetes Conference for Type 1 Diabetes in Ireland

MY SON’S THRIVEABETES CONFERENCE EXPERIENCE

Cayden Making Friends at Thriveabetes

The children were divided into three groups based on their age. There were great activities put on for the kids including puppet making and circus skills workshops and a disco. Each of the children's rooms had volunteers who were experienced in checking blood sugars and dealing with hypos so I had no worries leaving him while I attended the workshops. He made friends for life. The kids also had a group session with Joe Solo. He made a great impression on Cayden. He still asks “When can we go to Thriveabetes again?”

Here's Cayden's experience in his own words :)

Joe Solo at Thriveabetes Ireland 2016

WHAT I GAINED FROM THE EVENT

Hope, courage, positivity, knowledge and a great sense of community. It was the first time since diagnosis where I felt that fear wasn’t ruling me, that things were actually going to be ok.

I learned far more in that one day than I had from months of reading stuff online. The Diabetes online community is like a lifeline but nothing can compare to being together in person and I think we are very lucky to have an event like this in Ireland.  It’s also great for the kids to see other children living with the condition too.

WHY MY FAMILY ARE RAISING FUNDS FOR THRIVEABETES

It's simple: we want to ensure that the next Thriveabetes conference goes ahead.  Thriveabetes is organised by a group of dedicated volunteers living with type 1 diabetes.  Organising an event of such a scale like this is no easy task and I admire the time and effort the team of volunteers put in. I try to help out when I can. The cost of running the event is quite significant.  Ticket sales alone are not enough. Fundraising is crucial to ensure the conference continues and to keep ticket prices reasonable.

FUNDRAISING MUSIC EVENT

My husband, Pete has organised a Fundraising Music Event which will take place on Saturday 12th August in the Moat Theatre, Naas, Co. Kildare. Tickets are €15 and available in advance from The Moat Theatre at this link.  We’re hoping to raise all of the funds required on the night and I would be extremely grateful if you could share the event with everyone you know. If you want to support this event but are unable to attend, you can also make a donation directly to Thriveabetes here.

Musical guests will include; Pete Kavanagh, The Cahill Sisters, Hally and special guest, Luka Bloom.  There will also be a raffle on the night with some great prizes (Currently accepting raffle prize donations; please get in touch if you are interested in helping out).

We asked Luka Bloom to perform at this event because his music has played a special role in our journey so far. We went to see him perform live two weeks before Cayden was diagnosed and he signed a CD to Cayden and our daughter Lilibeth.  Cayden was delighted with this and loves the album.  It was the album that we had on the cd player in the car on the surreal journey home from the hospital, not really knowing what was ahead for us.

It’s become one of Cayden’s favourite albums and one he asks us to play a lot so we chanced our arm and asked him if he would perform.  We were super excited when he kindly agreed.

Cayden saw him perform live for the first time a few weeks ago and he was over the moon when he dedicated a song to him :)

I would be super grateful if you could take a moment to find out more about the fundraiser and share it with your family and friends. It would mean an awful lot. Click here to get tickets.

Thank you so much for taking the time to read this and if you've not been to a Thriveabetes Conference before, I hope it has helped give you a feel as to what to expect at the next conference.

The Irish Freestyle Libre Update

Last weekend, I attended Abbott’s European Diabetes Exchange forum (‘dX’) in Amsterdam, Netherlands. The mission of dX is to create a place where bloggers from all over Europe can meet and exchange ideas in a fun and engaging way, and discuss matters that affect the diabetes community. And it certainly was that! However, the thought on a lot of minds attending, especially those of us from the UK and Ireland, was when will the Libre become reimbursed under our health service as with most other diabetes medications, supplies and devices?

Disclaimer: My travel and accommodation expenses were paid by Abbott to attend DxAmterdam, otherwise I wouldn't have been unable to attend. But all thoughts and opinions are my own. I wrote the beginning of this post before I went to DxAmsterdam.

What’s included in this post;

• A Diabetes Management Revolution
• Research on how the Libre is impacting diabetes managment
• What's new with Libre?
• Update on the Libre’s application with the HSE for inclusion on the Long Term Illness Scheme

A Diabetes Management Revolution

I do believe that when we look back on the launch of the Abbott Freestyle Libre, we will consider it as one of the important revolutions in diabetes management. Just like when the first blood glucose self monitoring meters came out.

Before the Libre, only a few people with diabetes had access to, continuous information about blood glucose levels, into the hands of many more people. Yes, people have to pay for it and it’s costly but people are paying for it! And yes, it’s still only a few people who have the Libre but that number seems like it’s increasing everyday.

Finally people can see what glucose levels are at any time, they have more information about how different types of food and exercise and stress does to glucose levels. People can see a high or low blood glucose even a head it off at the pass thus staying within a good range more.

And healthcare professionals can see this too. Things that we knew about our own diabetes are being validated with graphs and now health care professionals realise that they are learning from us as much as we learn from them. This is a team player equaliser making us, the person with diabetes a more equal team member.

In the 1980’s the Self monitoring blood glucose meter was a game changer - they gave people access to what their blood sugars were within 15 seconds. Maybe carb counting and the basal/bolus regime gave us better management.

In this decade, the Freestyle libre gave everybody access to continuous data. So thank you Abbott!

How is the Libre doing?

Tim from Abbott (I lost my speaker profile book so I don't have any titles for some of the people who presented to us) told us that, from their observations, on average people who use the Libre were scanning their blood glucose levels 16 times and that this was leading to reduced time in hypo and increased time within their blood glucose targets. And they have the research to prove it.

"The real-world data findings were presented today at the Advanced Technologies and Treatment for Diabetes (ATTD) congress in Paris. The data show a strong link between real-world use of FreeStyle Libre system and glucose control. The full data set was generated from 50,831 readers, which were used to scan 279,446 sensors. This constituted 409.4 million glucose measurements, 86.4 million monitoring hours and 63.8 million scans – representing more than 50,000 FreeStyle Libre users across the Europe region.

Key findings of the real-world data of the FreeStyle Libre system:

• More scanning: Users checked their glucose levels an average of 16.3 scans per day
• Across the spectrum of scan rates seen in the population, the following trends were observed as scan rates increased:
  • Improved HbA1c: Average glucose level decreased as scan rate increased with estimated HbA1c decreasing from 8.0 to 6.7 percent
  • Reduction in hypoglycemia: Time spent below glucose levels of 70, 55 and 45 mg/dL decreased by 15 percent, 40 percent and 49 percent
  • Reduction in hyperglycemia: Time above 180 mg/dL (10.0 mmols) decreased from 10.5 to 5.9 hours per day
  • Increased time in range: Time in glucose range (70-180 mg/dL) (3.9mmols - 10.0 mmols) increased from 12.0 to 16.8 hours per day"

Source: PR Newswire

What’s next for the Libre?

Abbott Diabetes Care are currently working on the pregnancy indication and will have more news soon. The Libre Link, which is not availible in Ireland yet, allows you to scan your sensor using your phone, is now uploadable to the following diabetes management apps;

• Social Diabetes
• Nutrino
• Diasend
• MySugr

Update on the Libre’s application with the HSE for inclusion on the Long Term Illness Scheme

No news is good news, right? Abbott submitted their application for inclusion on the Long Term Illness Scheme earlier in the year. The HSE acknowledged that they had received the application through parliamentary questions from our public representatives in the Dail in March 2017.

“It will be considered in accordance with the Health (Pricing and Supply of Medical Goods) Act 2013. The application will be assessed for listing under reimbursable items for people (aged 4 and above) with diabetes who intensively use insulin; namely those requiring multiple daily injections of insulin (MDIs).” From Abbott’s website.

My Abbott representative while attending DxAmterdam said that “the HSE had some follow up questions for Abbott which they have replied to.” However, late last week the HSE came back to Abbott with a couple more follow up questions, which Abbott intend to reply quickly too.

So it looks like it a bit of paperwork tag but that shouldn't be a surprise, should it?!? No one seems to know how long this process is going to take or how this process works. So we still wait and wait without any significant communication from the key players; this is probably the most frustrating part of this process for me - the lack of communication from the HSE or the voice of the diabetes community in Ireland.

So far, full reimbursement of the Freestyle Libre has been approved in France, Austria, Sweden and Finland. And partial reimbursement in Italy, Switzerland and Germany. My fellow bloggers in the UK say that the NHS is very close to approving it. Let's hope we are as close to it as they are in the UK!

Summer Music Festivals, Type 1 Diabetes and what to know?

It’s Summer and it’s also the start of music festival season. This was kicked off with GunsnRoses in Slane Castle on Saturday 27th May. We have Longitude, Electric Picnic, Castlepalooza, yet to come. You bought your tickets for the gig, sorted your transportation and accommodation, etc. One of the last things you will probably consider, if you even think of it at all, is having a plan for dealing with the restrictions placed on bringing in food and drinks to these events when you have type 1 diabetes.

I would like to thank those who posted about this topic in the private “Diabetes in Ireland” facebook group. I asked posters if they would allow me to share their experiences for the benefit of new event go-ers or new to these restrictions. In particular, Sinead Murray who emailed the event promoters information to me.

The first thing you need to know about these events is that it’s standard practice, especially the ones where there are food and drink vendors inside, that people are NOT permitted to bring Food/beverages into the event.

At the recent concert in Slane Castle, it was “Strictly NO REFRESHMENTS IN HARD CONTAINERS (cans, plastic bottles, glass) – even those containing water / non-alcoholic liquids in them.” From Slane Castle's website.

What does this mean for people with type 1 diabetes who would need to carry fast acting glucose, which may be in liquid form and carb snacks for low blood glucose emergencies?

This means that unless you have thought to make arrangements that you will most likely not be allowed to bring in bottles of Lucozade, it will be confiscated. You will need to have a backup plan. And if you want to bring your Lucozade in with you either contact the event promoters or get a doctors letter that states that you need to carry food on you at all times. Plus, it's no harm to have the letter state that this includes Lucozade for medical emergencies.

Some of the posters who shared said they either didn’t bring any hypo supplies or food with them but bought some when they got inside the venue. Another poster said that they just brought whatever they needed in a small inconspicuous bag and had no issues. Another poster had Lucozade confiscated.

The first response from Slane Castle Event promoters was that if you had a doctors letter they would allow you to bring in food but still not in hard plastic containers and certainly no Lucozade. They also said that they would accept a copy of the correspondence. Later, this was followed up by a second email with a reversal on the Lucozade stance.

I have compiled some information on going to music festival from some other websites and here are a few recommendations as a person with type 1 diabetes. (Updated since I received some new information from a member of the diabetes online community on 31-5-2017)

Get a letter from your GP Yes, I know it’s a pain in the behind but if you get one letter you may be able to use it for a number of concerts and maybe for a number of years. Make sure that your letter states your need to carry food on you at all times.

The people on security will know NOTHING about diabetes - nothing relevant anyway. Don’t judge! And definitley don't bank on security being understanding. Explain with a “kill em with kindness” attitude that your food is only for medical emergencies. As a person with type 1 diabetes your blood sugars can go low and you need to treat it with fast acting sugar.

Contact Event Promoters

This is a really good idea because you may be able to avoid getting a letter from your GP and as a bonus you are education one customer service person at a time, maybe even a whole customer service department :-O, at a time. When you contact the promoters explain why that you carry medical supplies such as needles, insulin pens and also explain that you need to carry food and fast acting glucose on your person at all times. The event promoters will most likely respond with "the rules are the rules" email. However, I encourage you to respond to this email explaining again the medical neccessity of having  food and fast acting glucose on your person at all times. At this point, the customer service person may get some outside advise and you will be exempt from the restriction.

Brush up on your Type 1 Diabetes and Alcohol knowledge

This goes without saying. Just google Alcohol and type 1 diabetes and you'll find loads of info on this.

And

Learn from the experience of others Here a couple of blog posts I found that give other useful information;

Diabetes.co.uk Festivals and Diabetes Guide

http://travelbetic.com/2016/04/06/type-1-diabetes-at-camping-music-festivals/

https://beyondtype1.org/your-type-1-guide-to-music-festivals/

Of course being of a certain vintage it’s not surprising that I had not come across this information before. I am so passed the days where I rocked out at concerts and most of what I remember was at Feile - The Trip to Tipp! (eye roll) in the 90’s.