Need for a National Diabetes Register

Diabetes Ireland has launched its 2022 Pre-budget submission and is proposing 8 immediate actions for implementation which will improve the quality of life for over 225,000 people living with diabetes and reduce the long-term costs of preventable diabetes complications. The submission is focused on a range of deliverable actions that are person-centred, cost effective and builds on existing HSE commitments to tackle chronic conditions including diabetes.

One of these Actions is the need for a National Diabetes Register

National Diabetes Register

National Diabetes Registry

Diabetes Ireland is calling for the creation and implementation of a National Diabetes Registry. Health services that aspire to deliver high-quality diabetes care need to know who lives with diabetes in their jurisdiction. Ireland does not have a National Diabetes Registry. Therefore, there is no accurate figure available for the number of people living with diabetes in Ireland. Initial steps towards this were previously funded, but funding was subsequently suspended with COVID-19. The HSE would need to estimate the costs of this (largely ICT) project.

The lack of a National Diabetes Registry represents a significant problem for our health service as we attempt to tackle diabetes, an increasingly common and costly chronic disease. Establishment of a registry would help with tracking the prevalence of the condition, measuring outcomes and cost of care and planning for future services. A National Diabetes Registry also has the potential to provide an architecture and approach for the subsequent development of a national chronic disease registry.

In 2014, Ireland was ranked 20th of 30 European countries in a Euro Diabetes Index survey with the lack of a diabetes registry highlighted as a major deficiency. This deficiency came into sharper focus recently when the health service was unable to easily identify the diabetes population as part of the COVID-19 vaccination programme.

In contrast to the situation in Ireland, our nearest neighbour, Scotland, maintains a National Diabetes Registry and can easily identify the diabetes population and track the prevalence of diabetes year on year. The most recent data from Scotland (taken from the Scotland Diabetes Survey 2018) are highlighted in the Table below. The figures for Ireland are estimated based on the Scottish prevalence of diabetes (5.6% of the total census population) and based on the Scottish prevalence of type 2 diabetes (87.9% of the total diabetes population) and type 1 diabetes (10.8% of the total diabetes population). Other (rare) forms of diabetes have not been included in the Table 1:

Diabetes Ireland contacted all TDs and Senators on Wednesday 14 July on behalf of our community asking them to make representations on this and the other issues contained in our Pre-budget submission. Some of our active volunteers’ groups also followed up locally with their own local representatives. We are now asking you to Act. We need your help to highlight this issue once again in advance of the upcoming budget.

Call for Action: What Can I do?

1. Copy the template below into an email and if you wish add your personal story and reasons why this problem matters to you.
2. Find your local TD’s (constituency) https://www.oireachtas.ie/
3. Send your email to your local politicians.

Email/Letter Template

Dear (INSERT NAME OF TD)

I am a constituent and regular voter in your area.

I/my family member have/has lived with [INSERT THE TYPE OF DIABETES] diabetes for [INSERT YOUR DIABETES DURATION] years. I often feel that… (write here your personal story and the reason why you would like to highlight this particular issue to politicians).

Ireland does not have a National Diabetes Registry and because of this we were ranked down as 20th out of 30 European countries in a Euro Diabetes index survey with the lack of diabetes registry highlighted as a major deficiency in Ireland’s health service.

The lack of a National Diabetes Registry represents a significant problem for our health service as we attempt to tackle diabetes, an increasingly common and costly chronic disease. Establishment of a registry would help with tracking the prevalence of the condition, measuring outcomes and cost of care and enable better planning for future services thus enhancing quality of life for people with diabetes.

I am writing to you to ask for your support for the diabetes community by asking the Minister for Health to develop a National Diabetes Register for people living with diabetes in Ireland.

Parliamentary Questions to ask the Minister for Health:

To ask the Minister for Health when will the Sláintecare project on the development of a National Diabetes Register recommence and if he will make a statement on the matter.
To ask the Minister for Health, does he accept the need for a National Diabetes Register; why there is no current register and if he will make a statement on the matter.

Further information on this issue can be found at https://www.diabetes.ie/advocacy-call-to-action/national-diabetes-registry/

Budget Submission, click here.

Thank you for your time in considering my request.

I hope to hear from you in due course.

Yours sincerely,

Your Name, Address, Email