Advocacy

I was a diabetes advocate before I knew what it was. It all began when I attended Diabetes Ireland’s launch of their Diabetes Action Campaign in Dublin in 2010. It was the first time that instead of being presented with a list of problems in diabetes care, we had a call to action. I couldn’t wait to sign up as a volunteer. And through all of these activities, I figured out what I want to be when I grow up. 😊 However, I have since reduced the time I focus on diabetes advocacy to spend more time promoting diabetes peer support through Thriveabetes.

Access to Diabetes Technology

In any advocacy campaign, information and data is an essential starting point. However, Ireland does not have any diabetes audits or a national diabetes register, and so does not have this information in the public domain or even accessible to medical professionals. I realised that I had been collecting data through Parliamentary Question responses and that this may generate some information rather than having no information.

Access to Freestyle Libre: 2018-2023

When the Department of Health issued a statement on the 19th of January 2018 announcing the HSE’s decision to approve reimbursement of the Abbott Freestyle Libre for only people with type 1 diabetes aged between 4 and 21 years, I was so angry. I had been using a CGM at that point for three years, and it had been a game changer in my diabetes management. I strongly believed that the Libre would have the same impact for all people with diabetes. Read my initial reaction here.

I wasn’t alone, and thousands of people with diabetes signed a petition created by Davina Lyon to try to bring attention to the fact that almost 20,000 people with type 1 diabetes were excluded from benefiting from this technology.

Since then, I’ve been involved in many advocacy efforts, from surveys to presentations to raising awareness among local and national politicians.

In 2022, I created a short document looking at flash and continuous glucose monitoring use in Ireland to highlight how people were eager to adopt it and that these devices were being funded by the HSE but in an inefficient, expensive and unequal manner. I also created a follow-up document in 2023 with more concrete data, see the section below for more information. in September 2023, the HSE lifted the age restriction on the Freestyle Libre (see HSE Pharmacy Circular where this was announced here).

CGM uptake in Ireland from 2018 to 2022

In 2022, I realised I had cumulated a lot of data on the numbers of people using flash and continuous glucose monitoring through multiple Parliamentary Question responses between 2021 and 2022. I had also gone back to full-time education, studying Public Administration and Politics, gaining some skills in writing reports. I decided to compile this information and create a document explaining the findings. I updated this document with recent figures in 2023, which revealed that over 53% of the estimated type 1 diabetes community was using these devices. This would mean that increasing access to them would only require financial projections for the remaining percentage of the population. Link to 2022 blog post here.

Insulin Pump Uptake in Ireland

As I was always curious about access to insulin pumps, I decided to take the same approach and published a short report on Ireland’s insulin pump uptake in 2023.

Midwest Diabetes Advocacy Group 2019-2023

Since the creation of the Clare Diabetes Support Group, it was clear that there was two very different standards of diabetes care for adults with type 1 diabetes in the Midwest and West. People attending the service in Limerick or Clare did not have access to specialist diabetes education, a cornerstone in diabetes management, nor did they offer insulin pumps.

In 2018, the publication of the National Survey of Diabetes Services in Acute Hospitals highlighted a huge staffing issue, and in 2019, when Diabetes Ireland received confirmation that there was a four-year waiting list to access the diabetes clinic, they published a statement on the issue.

At this point, I met with local county councillors to highlight this, which resulted in local and national media attention. This is where I was joined by five other amazing advocates from Clare and Limerick, and we became a force to be reckoned with.

Diabetes Ireland’s Advocacy Group 2019

This group is made up of people living with diabetes and facilitated by Diabetes Ireland. We meet three to four times per year to discuss what advocacy projects Diabetes Ireland should focus on and collaborate to develop a strategy.

Diabetes Ireland National Podiatry Campaign 2010 - 2014

In 2010, Diabetes Ireland launched Diabetes Action to push for national diabetes policies to be implemented in the health service. The first campaign in this three year roadmap was to implement the National Diabetic Foot Model of Care.