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.