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!

What did you want to see in your diabetes clinic - Survey Results

In February this year, we asked you “What is the one thing that you would most like to see implemented in your diabetes clinic?” The sampling size for our survey was small and so it would be really interesting to see what the views are from a larger more diverse group.

We gave people four elements to choose from;

1. Access to Psychology
2. Access to Structured Diabetes Education
3. Access to Insulin Pumps and
4. Access to Continuous Glucose Monitoring systems.

40% of the people who responded were adults with type 1 diabetes and 60% were parents of children with type 1 diabetes.

Here are the results.

 

This is exactly how I feel about structured diabetes education. It is a must have, absolutely must have!

Thank you to everyone who took the time to fill out the survey. It made for very interesting reading on my part.

Don't forget we are raising funds towards the cost of Thriveabetes 2016 through a raffle. Support us by buying your tickets here. You may even win your accommodation for the conference?