Only Days til Thriveabetes 2018

It is just days to Thriveabetes 2018. I really, REALLY can’t wait! It’s been way too long since we had a D-party. We have a lot of newcomers to the conference this year who may not know what to expect. This is a review I wrote after Thriveabetes 2016 with some of our photos, it may help to give you a sense of what you are about to experience.

Well, we also have a lot of people coming back to Thriveabetes, that, should really say it all!!! Hello Familiar Faces:-D

This event has been planned, from beginning to end, by volunteers who feel passionate about bringing people with type 1 diabetes together. We have been working hard behind the scenes for the last 12 months to make this happen. Please click on this link and find out about who we ALL are. Seriously, it's not just me people!

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Our Third National Event

This is our third national event and second family conference. In Maynooth in 2015, we had 190 people.

In Naas 2016, we had 248 individuals attending;

• 62 children aged 5 to 16 years
• Approximately 70 adults living with type 1 diabetes and
• Approximately 90 parents of children with type 1 diabetes.
• 45 people on a waiting list!

This demonstrates a clear demand for this type of event.

Our primary objective

The primary objective of Thriveabetes is to provide emotional support to all the adults, to both parents of children with type 1 diabetes and adults with type 1.

Why?

We feel most of the medical information about living with type 1 diabetes is available from your diabetes clinic, from attending diabetes information conferences and from the internet.

We felt that no one was talking about what it is like to live with type 1 diabetes and how it affects every element of our lives. The psychological effects of living with type 1 diabetes.

Parents of children with type 1 diabetes, how often does anyone ask YOU how you are coping with your child’s diabetes?

Adults with type 1 diabetes, are you ever asked how you’re coping with this life long chronic illness? I bet not often.

And most of all we want you all to find:

Information, Motivation and Inspiration to Thrive with Type 1 Diabetes.

Thriveabetes Type 1 Diabetes Conference & Exhibition

Sat 24th Feb Dublin.

Last chance to snap up the last few registration places.

Registration closes at 12pm/Noon on Friday 23rd February.

*** Advanced registration is required. Register here.

Register soon

What's Next in the Freestyle Libre Campaign?

What's next in the Freestyle Libre/Equality for all people with type 1 diabetes Campaign? Since I posted my initial reaction to the HSE's announcement to reimbursed only children and young adults on multiple daily injections (MDI) for the Freestyle Libre, I have joined forces with fellow advocates, Davina Lyon from Diabetes T One and Elizabeth Murphy, Waterford Diabetes Support.

WHAT HAS BEEN HAPPENING?

Firstly, I would very much like to thank all the members of the diabetes community who have reached out to us, emailed their local TD's and have been sharing those replies with us. We have gathered so much information from that process.

Diabetes Equality Petition

Davina created a Change.org petition that has gathered an unprecedented 13,000 + signatures. She is working with her local TD, Frank O’Rourke and with Diabetes Ireland to get this petition into the hands of Minister Harris.

Elizabeth has also been working with her local TD, Mary Butler on the same objective. She has been emailing Deputy Butler with follow up parliamentary questions to get more information from the HSE.

Dáil Topical Issue Debate

Both Davina and Elizabeth requested that their local TDs, Frank O’Rourke and Mary Butler, ask parliamentary questions to clarify some of the information in the HSE's statement. Both Deputies decided to do this jointly and on Tuesday 6th February, publicly, asked the Minister for Health these crucial questions:

• What is the specific criteria which must be satisfied in line with the recommendations of the Health Technology Assessment Group in order to get reimbursement for children/teenagers with diabetes who use the Freestyle Libre Blood Glucose Management system?
• What does the term “young adult” mean? Is age going to be a binding limit for determining suitability of people for reimbursement of the Blood Glucose Management system Freestyle Libre?
• How long will it take for the reimbursement suite (the reimbursement paper trail process) to be established and what date can suitable children/young adults expect to get access to use the Freestyle Libre Blood Glucose Management system?
• Why are children on insulin pumps being excluded given that the HSE advocates for insulin pumps for children?
• Is the minister for Health, Simon Harris willing to meet a delegation from the type 1 diabetes community and accept the petition with 13,000 signatures?

The minister did not attend this session in the Dail on this occasion. He deputized Deputy Jim Daly, Minister for State with Special Responsibility for Mental Health and Older People to respond. Deputy Daly acknowledged that he did not have any answers or new information for us. But that we did indeed deserve and need answers to the questions asked.

THE NEXT STEP

The next step is taking matters into our own hands. Davina emailed the Minister for Health, Spokespeople for health from both Fianna Fáil and Sinn Fein, Diabetes Ireland and the Director General of the HSE, Tony O'Brien requesting this meeting again.

If the Minister doesn’t respond we plan to deliver it anyway. We hope that Frank & Mary and other members of the Dáil will accept it on the Minister's behalf. Do you think if we give you about two weeks notice you would join us?

Watch this space!

I also have follow up questions on why the HTAG document makes it’s recommendation that this device be approved for children without any clinical evidence to support it to ask the Minister and the HSE on my personal blog: BloodSugarTrampoline.com publishing on Wednesday 14th February.

Here is the video of Deputies Mary Butler and Frank O'Rourke asking those questions;

The Positive and Negative Psychological Effects of Type 1 Diabetes on Children

The main focus of Thriveabetes and it’s reason for being is that we, people with type 1 diabetes, felt the psychological effects of living with type 1 diabetes just weren’t being talked about anywhere. This is why I was so excited when I saw that a project called "The Positive and Negative Psychological Effects of Type 1 Diabetes on Children" at this year’s BT Young Scientist Exhibition. I was so thrilled I heard that they came first in their category: Social & Behavioural Sciences 1st place Junior group. The teenagers in question are Sarah Healy and Miriam Murphy and they attend Cork Scoil Mhuiregan Smál, Blarney, Co. Cork. I’m thrilled to let you all know that Sarah and Miriam are bringing their project to our Thriveabetes Exhibition.

Here is a guest post written by 13 year old Sarah.

The positive and negative Psychological effects of Type 1 Diabetes on children.

By Sarah Healy

My name is Sarah, I am 13 year years old, and living with type 1 diabetes for the past 3 years. In November 2014 at the age of 9, I was diagnosed with type 1 diabetes. It changed my life forever. I got great support from the diabetes team and my family. I started out on insulin injections but now I'm on an insulin pump which has been a very positive impact on my life. Having type 1 diabetes has been an emotional rollercoaster.

I experienced many daily challenges and stresses and found that there was no psychological support available on the diabetes team to help me deal with these challenges. After talking to other type 1 diabetic friends, I realized many more had the same diabetes stress and challenges without any support.

As a result I decided to take the opportunity of the BT Young Scientist Exhibition and it was my incentive and the reason behind this project. As a result of my experience, I felt there was a need to investigate the positive and negative psychological effects of type 1 diabetes on children, and to research the need and services available for psychological support.

I also wanted to highlight the need for support services and the lack of services available. Also to see if we could come up with a solution to these problems. I also wanted to create awareness of type 1 diabetes.

About the project

We wanted to examine the psychological challenges of living with type 1 diabetes in the 8 to 15 year age group in Ireland. We decided to do this by:

• Investigating the positive aspects of living with type 1 Diabetes
• Identifying the negative aspects of living with type 1 Diabetes
• Exploring the need for psychological support services for children with type 1 Diabetes
• And to ascertain the current available psychological supports for children with type 1 Diabetes in Ireland
• We also wanted to develop a novel technological strategy to improve psychological support for children with type 1 Diabetes

I can’t wait to hear more about the girls project and to meet both Sarah and Miriam. Here are some of the diabetes themed projects participating in The BT Young Scientist Exhibition this year:

Presentation College Cork Can full fat milk help control diabetes?

Louth St Vincent’s Secondary School A comparative study into the reported advantages and disadvantages of Insulin pumps.

Tipperary Presentation Secondary School Comparing CSII (Continuous Subcutaneous Insulin Infusion) with MDI (Multiple Daily Injections) in Children with Type 1 Diabetes

Wexford Creagh College Dia-beating Hypos

REGISTER HERE

Thriveabetes” is a one-day conference for people living with type 1 diabetes, or for people who care about someone with type 1 diabetes.

It takes place on Saturday, February 24th in The Red Cow Hotel.

*** Advanced registration is required. Find out more HERE.