Advocacy continues to be a very important priority for Diabetes Ireland. Our goal is to see improved public services, better and quicker access to good quality of care, diabetes technology and medications and better recognition of diabetes and the diabetes community by the Government and its public officials. Work is continuously ongoing to achieve improvements which will benefit the diabetes community. For more information on our advocacy work in 2021, click here.
Diabetes Ireland launched its first-ever 2022 Pre-budget submission in the summer of 2021 which proposed 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 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.
We campaigned to highlight the needs of the diabetes community by meeting with TDs and Senators and encouraged people to submit Parliamentary Questions to their TDs on one or more of the 8 issues in question. To read the proposed actions, click here.
Diabetes Ireland Advocacy Committee used personal messaging across all communication channels and media to drive the importance of these 8 key actions, gaining an exceptional reach of over 104,000 people. TDs submitted over 330 parliamentary questions to the Minister for Health on the various issues.
Access to Flash Glucose Monitoring Technology
Diabetes Ireland was asked by the HSE (MMP) to make a Patient Health Technology Assessment submission for the Freestyle Libre so that people of all ages, including people with Type 2 diabetes, can get access based on clinical need. Dr Kate Gajewska, Clinical Manager for Advocacy and Research with Diabetes Ireland, with support from members of our Advocacy Group developed a survey questionnaire to ascertain the view of people with diabetes which was launched in November 2021. The responses will be evaluated, and a report will be submitted to the HSE in early 2022. Diabetes Ireland is hopeful that a positive decision will be made in favour of access for all based on clinical need.
Our Diabetes Ireland Advocacy Group took the opportunity of the General Election in February 2020 to highlight the lack of resources in current HSE diabetes services by
General Election Doorstep Campaign
launching a doorstep campaign encouraging everyone living with diabetes to engage with election candidates seeking their support to address the health needs of the diabetes community. In late 2020, the Cross-Party Parliamentary Group on diabetes was restarted with Cormac Devlin TD as Chairperson with a view to highlighting the need for improved diabetes services nationwide to the Minister for Health and his Department, the HSE Officials and other stakeholders. Diabetes Ireland will continue to support this group in 2021.
A Single Preferred Glucose Strip for Testing….No Thank You!!
In the strongest terms possible, Diabetes Ireland said “No” to the HSE’s view that a single preferred glucose test strip for home blood glucose testing was suitable for all people with diabetes. Diabetes Ireland highlighted that this would have a detrimental effect on the maintenance of good diabetes management and that for effective long-term management both clinician and a person with diabetes should be able to access the most suitable blood glucose meter on the market for them in a joint decision-making process.
Diabetes Ireland also highlighted that this would allow sufficient choice, flexibility, visibility, dexterity, and other enhanced features to be considered in the decision-making process between the clinician and the individual. The HSE published its guidelines in February 2020 and Diabetes Ireland was delighted to see that its view was accepted and today there continues to be choice of blood glucose strip for everyone.
Although, the HSE proposed a preferred list of blood glucose strips, it has still allowed access for people to continue using their current blood glucose strip and only change if they wish to, in consultation with their clinician. However, for those newly diagnosed who require a blood glucose meter, clinicians are being asked to work with individuals to select from the preferred list but retain the ability to prescribe from outside of the preferred list based on clinical need.
Advocacy was one of the main priorities of Diabetes Ireland in 2019 and the formal setting up of the Diabetes Ireland Advocacy Group was a real positive step and highlights the intent of the charity to continue advocating for more diabetes service resources. The committee consists of with people with Type 1 diabetes, Type 2 diabetes, parents of children with diabetes and advocacy staff. The committee met a number of times in 2019 and has representation on the Board of Directors. Our aim is to see improved public services, better and quicker access to new diabetes technology and medications and better recognition of diabetes by the Government and its public officials.
Furthermore, a new cross party parliamentary group on diabetes was set up in Leinster House with a view to highlighting the need for improved diabetes services nationwide to the Minister for Health and Department of Health and HSE Officials and to raise awareness of diabetes among our politicians and senators. Together, this will give us a stronger voice in making diabetes a high-level priority for future resourcing and funding.
A huge and welcome development for the diabetes community in the North West was the granting of permission to start the building of a new diabetes centre in Sligo University Hospital. Our local Sligo branch committee along with diabetes staff in the hospital have worked together for almost 18 years advocating for this development and to see the building actually begin to take shape is wonderful for them and the local diabetes community. Of course, advocacy work will continue to ensure that the centre is fully equipped and has the appropriate staffing resources in place to support the local diabetes community in the future.
In 2019, Diabetes Ireland continued its representation on the HSE National Clinical Programme for Diabetes. In agreement with the programme, 2 new patient advocates, one for Type 1 diabetes and one for Type 2 diabetes joined the committee, strengthening the voice of the patient on the programme committee. Both advocates also sit on the newly formed Diabetes Ireland Advocacy Committee, a new committee of people with Type 1 diabetes and Type 2 diabetes and parents of children with diabetes. The committee was set up to support Diabetes Ireland’s advocacy work. The committee met a number of times in 2019 and has representation on the Board of Directors. Together, as Diabetes Ireland, the aim is to see improved public services, better and quicker access to new diabetes technology and medications and better recognition of diabetes by the Government and its public officials.
In late 2019, a new cross-party parliamentary group on diabetes was set up in Leinster House with a view to highlighting the need for improved diabetes services nationwide to the Minister for Health and Department of Health and HSE Officials. Diabetes Ireland will continue to support this group in 2020.
Through the HSE National Clinical Programme for Diabetes, Slaintecare funding to start work on delivering a National Diabetes Patient Register was secured. This is a longstanding priority for the diabetes community and hopefully we will see strong progress on this work in 2020.
A new tender on access to a range of new Insulin Pumps and Continuous Glucose Monitoring systems which would improve diabetes control for many people with Type 1 diabetes for the next four years was finalised in 2019. However, the HSE decision to on removal of the age restriction on the new Flash Glucose Monitor, Freestyle Libre, was deferred out to 2020. It is the position of Diabetes Ireland that it is made available to everyone based on clinical need and Diabetes Ireland strongly advocated for this in 2019 and will continue to do so in 2020.
Work on updating the model of care for the diabetic foot and Type 2 diabetes management guidelines also begun. Building work on the development of a new diabetes centre in Sligo University Hospital begun in late 2019.
After many years of advocating by the Sligo branch of Diabetes Ireland and local diabetes healthcare staff, this is a fantastic achievement and we hope to see the opening of the centre in 2020.
Diabetes Ireland also advocated for RSA Guidelines on diabetes and driving to recognise CGM
Diabetes Ireland also provided advocacy support to 7% of callers to its helpline in 2019. These were in the areas of insurance cover, work and school related discrimination issues.
In 2019, Diabetes Ireland advocated for the development and maintenance by the HSE of an annual national audit of Type 1 diabetes services nationwide. This would provide current information on standards of care being delivered to people with Type 1 diabetes nationwide and allow the HSE to identify where extra resources are required to ensure everyone regardless of geographical location can receive high quality support and care to help them manage their condition effectively. Diabetes Ireland is at the forefront of this work and will continue its efforts in 2020.
Diabetes Ireland welcomed news that three new Consultants for paediatric diabetes services in Waterford, Cork and Sligo were identified and hope to see these posts filled in 2020.
Locally, many of our patient advocates worked tirelessly to highlight deficiencies in local diabetes services and advocated for extra resources.
A new paediatric diabetes care patient resource pack was published by the HSE in 2019 and a new schools policy protocol on the management of children with Type 1 diabetes is awaiting publication.
Diabetes Ireland working through the various committees mentioned above will continue to advocate for the improvement of diabetes services nationally.
Ensure that work on the development of a National Diabetes Patient Register and a National Annual Audit for Type 1 diabetes continues in 2020.
We will advocate for publication and implementation of all the outstanding HSE Guidelines and Policies.
Advocate for access to new medications and technologies that will improve diabetes control for many people with diabetes. This includes advocating for a decision on removing the age restriction on the Freestyle Libre and ensure its availability and inclusion in the Long-term illness scheme for people with diabetes of all ages.
Ensure that building work on the development of the new diabetes centre in Sligo University Hospital is completed and that appropriate staffing is provided to support the local diabetes community.
Locally, seek to ensure that agreed consultant posts for paediatric diabetes services are filled in 2020.
Seek to complete and implement the best practice framework for meeting the care needs of primary school children with Type 1 diabetes during school hours.