Speaker Spotlight; Gary Scheiner

The opening keynote speaker at Thriveabetes is Gary Scheiner. Gary is a person with type 1 diabetes for over 30 years and is also a diabetes educator with his own practise in Pennsylvania. He has clients from all over the world. He wrote the book "Think like a Pancreas" in 2004, which essentially covers anything and everything you'd need to know about living with diabetes and has been updated several times including most recently in 2012. "Few diabetes books focus specifically on the day-to-day issues facing people who use insulin. Diabetes educator Gary Scheiner provides the tools to “think like a pancreas”—to successfully master the art and science of matching insulin to the body’s ever-changing needs. Comprehensive, free of medical jargon, and packed with useful information not readily available elsewhere, this new edition covers the many strides taken in diabetes education and management since the first edition seven years ago." Source Good Reads

Gary has put a guest post together so that you can get to know him a little before Thriveabetes 2016.

It’s All About Bridging Gaps

By Gary Scheiner MS, CDE

Traveling is a lot of fun for me.  After 31 years of living with type-1 diabetes, I know that my blood sugars aren’t in-range as much as usual when I travel, but I would never give it up.  I get to meet new people, see new places, and experience new things.  Those are only a few reasons why I’m super-excited about presenting and participating in the Thriveabetes Conference this coming October. 

I recently returned from a trip to Budapest, Hungary to deliver a presentation to a large group of diabetes nurses from all over Europe.  I took a few hours away from the meeting for a walking tour of the city, and was amazed to learn how much devastation had taken place there during World War II (the city looks amazing today!).  During the war, the enemy learned that the best way to cripple a city was to destroy its bridges.  Six of the seven bridges spanning the Danube River in Budapest were destroyed, leaving a devastating gap between the two halves of the city.  

It made me think about the gap that currently exists between what most people with type-1 diabetes need to take care of themselves and what most healthcare providers are able to deliver.  Think about it:  Who has a doctor or nurse that gives us all the time we need?  Knows and applies all the latest technologies?  Makes themselves accessible whenever we need them?  Customizes the treatment plan for each individual?  And brings passion to their job each and every day?  Well, I’ve made it my personal mission to bridge those gaps for people with type-1 diabetes worldwide, including people all across Ireland, through my practice - Integrated Diabetes Services.

For starters, we’re bridging the time gap.  Our initial appointments are generally 90 minutes, and follow-up appointments are usually 45 minutes.  Just try to spend that much time with your doctor or nurse!  In addition, we encourage our clients to correspond with us between appointments so that we can review data, answer questions, and help them to troubleshoot effectively.

Then there’s the expertise gap.  Ever get the feeling that you know more about diabetes than your doctor?  Integrated Diabetes Services features a team of Certified Diabetes Educators, including nurses, dietitians, exercise physiologists and emotional health experts.  All of our clinicians have direct experience with the latest technologies (pumps, continuous glucose monitoring systems, software & apps).  We write books and journal articles.  We present at major national and international diabetes conferences.  We serve on advisory boards.  In our free time, we gobble up reams of information from research & clinical journals just to stay on the cutting edge.  We’re right at home when it comes to diving into detailed data logs and downloaded reports to uncover key patterns & trends.  You won’t find a sharper set of experts anywhere!

Given that our entire clinical team has a direct personal connection to diabetes, you’ll find a level of passion and compassion that is often lacking in today’s healthcare systems.  We know what it feels like to have a low in the middle of the night or a high that lasts hours for no apparent reason.  Teaching and managing diabetes isn’t just a job to us… it’s our mission.  

Accessibility isn’t just a convenience in modern life.  It’s a necessity.  All of our services are available via phone, video chat, e-mail, text, and data downloads.  Our patients love the ability to communicate with us at their convenience, not ours.  Between-appointment communication is encouraged, and always receives a timely response.

Integrated Diabetes Services believes that everyone deserves a customized care plan.  Our services are tailored to each individual’s wants, needs and interests.  There is no “one-size-fits-all” program.  

We provide advanced diabetes self-management education along with fine-tuning of blood sugar levels.  We offer this for both children and adults with type-1 diabetes.  Some of our specialty areas include sports/exercise, type-1 & pregnancy, weight loss counseling, insulin pump and CGM optimization, A1c reduction, and minimizing hypoglycemia & long-term complications.

We’re not here to replace your current healthcare team...  just to bridge the gap between what they provide and what you might need.  Our clients pay us directly for our services, and we are flexible with our fees for those who are unable to afford our usual rates. I sincerely look forward to meeting many of you at TRIVEABETES 2016 in Kildare.  If anyone has questions or would like to learn more about my practice’s services prior to the conference, please feel free to reach out to me personally by email (gary@integrateddiabetes.com), phone (+1 610 642-6055) or via my website (www.integrateddiabetes.com).  

Register for Thriveabetes

Thriveabetes 2016 takes place on Saturday 1st October in Naas, Co. Kildare. Registration is open now and you can read more about our speakers here.

Meeting our Public Representatives

On Wednesday 22nd June 2016 Diabetes Ireland, People with Diabetes and our National Clinical Leads in Diabetes Strategy briefed TD’s and Senators on the need for extra resources to improve the diabetes service for the 225,000 people living with the condition in Ireland today.  

How did it come about?

This event took place because Davina Lyon a person living with type 1 diabetes from Co. Kildare emailed her local TD’s about lack of services in both Naas and Tallaght Hospitals. And prompted by a call to action from Diabetes Ireland.

Frank O’Rourke, TD for Kildare North responded to Davina’s email and organised for us to have a room in Leinster House to make a presentation to our nation's TD’s and Senators.and invited all of his colleagues to attend.

I was so honoured that Davina, who is a friend through the Diabetes Online Community in Ireland, asked me to be a part of it. Both of us are members of Diabetes Ireland and asked for their advice and guidance on how to prepare for the briefing, which they did in huge quantities. Diabetes Ireland also put in a lot of their own stretched resources into their own preparation for the presentation with press releases and take away printouts for our attendees.

Our delegation grew to include;

Oireachtas Members;

•  Frank O’Rourke, TD for Kildare North
•  Mary Butler, TD Waterford.

Diabetes Ireland;

•  Kieran O’Leary, CEO
•  Hilary Hoey, Chairperson
•  Anna Clarke, Head of Research & Advocacy.

National Clinical Leads in Diabetes;

•  Dr. Nuala Murphy, Clinical Lead in Paediatric Diabetes
•  Dr Ronan Canavan, Outgoing Clinical Lead in Diabetes
•  Ms Siobhan Horkan,  Programme Manager for the HSE’s Paediatric Diabetes Clinical Programme

Four patient delegates;

•  Davina Lyon (Kildare),
•  Elizabeth Murphy (Waterford),
•  Grainne Flynn (Clare)
•  Rebecca Flanagan (Clare)

You can find out more about the patient representatives at the end of this post.

When the event was announced publicly, the four of us and Diabetes Ireland went to our diabetes online community asking if people would send emails to their own TD’s to represent them at this briefing. The response was overwhelming! And the true meaning of the word community was reinforced. Each TD we spoke to said they had received several emails and we felt you all in that room with us that day.

What a lot of pressure though, to speak for so many people:-O

What happened on the day?

Kieran, Anna, and Hilary from Diabetes Ireland, and Dr Murphy and Ms Horkan, greeted the four of us in Buswells across the street from Leinster House at 11am. With Dr Canavan, arriving in true superhero style; bike helmet and backpack. :-) 

We knocked back a quick one to steady our nerves!!!! No we didn’t! Three of us discussed our insulin adjustments for the nerves, excitement and the pressure that was causing some high BG’s and we had time for one very strong cup of coffee. Then it was show time!

Over the road we went, but first, get your photo taken;-)

The AV room in Leinster House is much like a small lecture room in a university, seats are not as comfy though. Frank O’Rourke & Mary Butler got us organised and settled.

Rebecca was brave enough to take the baton first. She gave a moving and detailed account of all the daily diabetes tasks that her 16 year old daughter has to do to help her manage her diabetes. We found out afterwards that this surprised a number of people who were under the impression that managing type 1 diabetes only involved eating healthily, taking insulin and forgetting about diabetes the rest of the day.

Davina Lyon spoke next giving her experience of making the very brave decision to go on an insulin pump only to discover that there was a waiting list and the only member of the diabetes team who could provide her with the training to use an insulin pump was on medical leave for the past six months.

Both our advocates spoke about the daily anxieties and concerns we feel living with type 1 diabetes such as the threat of diabetes complications, overdosing our insulin and the exhaustion of working out complicated daily mathematical problems.

Dr Murphy told us how “Right now, consultant paediatric endocrinologists are urgently required in Limerick, Galway and in the South East of the country. In Dublin, paediatric diabetes services are overflowing with insufficient clinic capacity to deliver high quality care. We have a shortfall of consultants, nurses and dietitians in each of our Dublin hospitals and with the new Children’s Hospital pending, planning for these posts needs to happen now”.

“In December 2015, a new paediatric diabetes strategy was launched which put forward a strong platform on which to build a high quality service with equity, local access and support for all children with Type 1 diabetes and their families, regardless of where they live in Ireland. As yet, we have seen no progress on implementing this strategy.”

TDs were informed that not a lot of extra resources were required for this. At present, 10% of the health budget is spent on diabetes annually with 60% of that spent on dealing with diabetes related complications. If just 0.4% (€5m) of that annual spend was re-directed towards funding the paediatric diabetes strategy, huge financial savings from preventing diabetes related complications would be accrued in future years” added Dr Murphy.

Dr Canavan, Consultant Endocrinologist, St Vincent’s & Loughlinstown Hospitals said “we have the costed strategies for paediatric, adult Type 1 & Type 2 diabetes that will address health inequalities, quality of life and health service planning to minimise expenditure and maximise patient care.

“We know that we can reduce the staggering amount spent on complications each year. In the past few years, the diabetes community has worked with the HSE in reducing the cost of diabetes medications and devices, making financial savings. We need those savings reallocated to providing the manpower resources to cope with the rising numbers and to encourage more effective daily management and better health outcomes. We need a multi-annual resource commitment to achieve this, rather than the annual “cap in hand” approach we all go through to try and get a few additional posts each year.

In time, we will then see a reduction in annual diabetes complications spending which will be good for the exchequer and more importantly quality of life”.

The presentations ended with a question and answer session from our TD’s.

It’s ironic that we, healthy people with diabetes, were there asking for an investment into keeping us healthy. Yet, if we had complications we would have a lot of what we need to manage those. Cart before the horse!

What were we asking for (the short version)?

The HSE has put measures in place that have reduced the cost of diabetes medications and devices, making financial savings.

We want those savings reallocated to providing the manpower resources below. We, (the service providers and the HSE) need to;

➜ Continue to support and implement the Type 2 Diabetes Cycle of Care Programme

➜ Implementation of the Paediatric Diabetes Model of Care

➜ Publish and implement the Adult with Diabetes Model of Care.

To do the above We need you, our TD’s and policy makers, to;

➜ Commit to a multi-annual funding programme to ensure that funding is in place for all of the above ➜ And that it is implemented in a timely manner.

Wrap it up!

We had to clear out of the AV room to allow the next group in. And the questions and discussions continued outside. Of course, before you leave always, always, get a photo inside the gates of Leinster House with purple socks in it!

Then we grabbed a lunch, hightailed it outta Dublin to make it home in time for your daughter’s 6th class graduation mass.

The four of us have received emails from various TD’s since Wednesday stating that they are supportive of what we are asking for and to keep them informed. Diabetes Ireland has another roundup of what happens next here.

And of course watch this space!!!

Huge thanks has to go to;

Frank O’Rourke, Mary Butler, Diabetes Ireland, Davina Lyon (all starts with her folks!!!), To our DOC. And to the gentleman who picked up my phone that I dropped & lost as I got out of the taxi and to Davina for picking up my handbag that I had forgotten all about and left in the AV room. Oops!

Who are your patient reps?

Davina Lyon; is a person with type 1 diabetes for 8 years from Kildare, a diabetes advocate, diabetes blogger and co-founder of the Diabetes T1 Ireland website and facebook page, which is aimed at providing information and support to people living with type 1 diabetes. Read Davina's review of the briefing here.

Elizabeth Murphy; is a person with type 1 diabetes for 40 years from Waterford, a diabetes advocate and works in information technology services.

Rebecca Flanagan; is mother to three very beautiful girls, her oldest, a 16 year old with type 1 diabetes for 8 years. Rebecca and her family live in Co. Clare. Rebecca is a diabetes advocate, marathon runner always raising money for diabetes and is co-founder of Thriveabetes. She also runs her own self catering business.

Grainne Flynn; is a person with type 1 diabetes for 23 years, originally from  Offaly, now living in Clare. She is a Diabetes Ireland volunteer, Diabetes Blogger, and Co-Founder & Event Organiser of Thriveabetes.

Diabetes Day in the Dail

On Wednesday 22 June in Leinster House, Diabetes Ireland is briefing TDs and Senators on current diabetes services and what future services are required to support the diabetes community nationally in the coming years. Myself, Rebecca Flanagan, Davina Lyon & Elizabeth Murphy have been invited to attend this event with both Rebecca, a parent of a child with type 1 diabetes, & Davina, an adult with type 1 diabetes, making personal statements. Next week I hope to fill you all in on how it went.

If you are reading this post early on the 21st and have a couple of minutes we would very much appreciated it if you would email your local TDs and ask them to represent you or your family member at this briefing. You can find email addresses for all of them here; Who is my TD?

Speakers will include Dr Nuala Murphy, Consultant Paediatric Endocrinologist and National Clinical Lead in Paediatric Diabetes, Dr Ronan Canavan, Consultant Endocrinologist, National Clinical Lead in Adult Diabetes and our four patient representatives.

On a completely different note - We want to hear your stories!

Over a number of months we have been featuring your diabetes stories. And you have all been fantastic! We would love to hear from more of you. Are you a diabetes veteran but new to the Irish Diabetes Online Community? Have you raised a child with diabetes who is now an adult? Are you a young adult still getting use to doing it without your parents? Basically, if you have something you want to say or a story to tell - we want to hear it.

This is the list of people we have featured over the last couple of years;

• Diabetes Families Trip to Trabolgan by Roisin Keegan Published 2016/05/31
• A Newly Diagnosed Family’s story Published 2016/05/23
• 17 and Type 1 Diabetes by Abbie O’Sullivan Published 2016/05/16
• The O’Sullivan D-Mum by Julie O’Sullivan Published 2016/04/25
• Tour de Type 1 Diabetes! By James O’Reilly Published 2016/04/18
• Type 1 Diabetes; A Rollercoaster of Emotions by Olivia Pyne Published 2016/04/12
• Meet Tracy Fahey from Limerick Published 2016/03/22
• Meet Shane O’Donnell, Young Leader in Diabetes Published 2016/03/08
• Rosemary’s Story; 30 years Pumping Published 2016/01/26
• Rebecca Flanagan; Thriveabetes had the potential to nourish Published 2015/02/25
• Christine Meehan; Thriveabetes is a first of it's kind event Published 2015/02/19
• Davina Lyon; Thriveabetes; A Fantastic Opportunity Published 2015/02/12

Email me at Grainne@thriveabetes.ie