On April 25th, the Midwest Diabetes Advocacy Group gave a presentation updating our Clare and Limerick diabetes communities on how much progress has been made campaigning for improved diabetes services in Limerick, Ennis and Nenagh.
The Midwest Advocacy Diabetes group is made up of myself, Erin Dolan, Jill Franz, from Clare, and Jean Langford, Ashling O’Kelly and Aisling White, from Limerick. We all have diabetes, we all are part of our local support groups and we all wanted to do something to improve our local diabetes services.
Here’s a summary of what we presented at the meeting and we hope that by sharing this others will feel empowered to do the same in their areas too.
Diabetes Services in the Midwest:
Where we were in 2019
It was common knowledge in our support groups that the diabetes service in Limerick was way behind other services in Ireland. However, until the National Audit of Diabetes Services and the HSE National Clinical Guidelines for Adults with Type 1 Diabetes were published in 2018, there was little understanding of why this was.
In 2019, the University of Limerick Hospitals Group confirmed that they did not have;
Specialist Type 1 diabetes Education for Adults
An Insulin Pump Programme for adults
And there was a four-year Waiting List for a first appointment to attend the diabetes outpatients clinics for both type 1 and type 2 diabetes.
Subsequent Parliamentary Question Responses stated that the main barrier to addressing all of these issues was the lack of specialist staff. The Diabetes Outpatients Clinic for Adults at University of Limerick Hospitals had:
0.5 Consultant Endocrinologist between 3 hospitals
4.4 Diabetes Nurses
0 dietitians
Diabetes Ireland release a statement highlighting all of this information and the Midwest Diabetes Advocacy Group which formed in late 2019, began writing to our TDs and County Councillors as well as encouraging those in our support groups to do so also.
Prioritising The Biggest Issues
As the main barrier to the biggest issues was identified as the lack of specialist staff, this became the number one priority of the group. The first task was to seek the funding for the biggest staffing void and the most necessary for structured education; dietitians. Once funding was approved we started asking about the recruitment timeline.
By the end of 2020, the HSE released a Winter Plan which included funding for additional funding for diabetes nurse specialists - this benefitted the midwest hugely.
What we did
Since 2019, the group had been engaging with local TDs and County Councillors which resulted in both Clare and Limerick County Councils proposing motions to write to the Minister for Health (Sincerest Thank You to Cllrs. Mary Howard, Elisa O’Donovan, Johnny Flynn and Cillian Murphy). This also generated national media attention.
However, in the run-up to World Diabetes Day 2021, the group ramped up our activities. We organised:
Access to Care Social Media campaign
Dip for Diabetes kickoff event in Lahinch, Co Clare
Blue Fountain on the UL campus
World Diabetes Day demonstration outside UHL
Erin created two Access to Care selfie videos from 40 submissions from people with diabetes from all over Ireland which were shared across Facebook, Instagram and Twitter with 18,360 views / 285 likes. This was in addition to Councillor John Maher recruiting fellow Labour Party members to join in with their own Access to Care Selfie. If you would like to view the videos or see more photos please do click here.
The result of all of the events organised was a huge engagement with many politicians and over 12 regional media placements. The collaboration with TDs, Councillors and Senators generated 74 Parliamentary Questions asked about Limerick Diabetes Services from 2021 to present.
Where we are now
Progress has been slow but steady. The hospitals group now have 2 Full-time Consultant Endocrinologist, 6 Clinical Nurse Specialists in Diabetes, 3 Staff Nurses, and 3 Diabetes Dietitians. The waiting list for the diabetes outpatients clinic which had increased in 2020 to six years with a total of 663 people has now reduced to 573 with the number of people waiting more than two years for an appointment reduced from 336 to 169 people.
UL hospitals group has also confirmed that they have reached out to DAFNE UK to take the necessary steps to become a DAFNE accredited centre which is fantastic news for all who are insulin-dependent.
What’s Next? First DAFNE, then Insulin Pumps
It’s too soon to be popping the champagne corks yet but the bottles can be put in the fridge. The staff in ULHG need to receive training to become DAFNE educators and then the rollout of the courses can begin. There is also the risk that the specialist staff may relocate to the Community Care services such as the Chronic Disease hubs which means that we are back to square one.
The group plans to keep requesting PQs asking for a timeline on when the first DAFNE course will be delivered. Once confirmation is received that this has happened the next issue will be to establish an Insulin Pump Initiation programme in the hospitals group.
We plan to mark World Diabetes Day 2022 in some way, maybe not a demonstration but it will be some form of gathering on Sunday 13th November 2022. Please do Save the Date!
It takes a village!
We concluded our presentation reminding our groups that none of this progress was ever going to happen with just one person or one organization. It took a team, the community, support from politicians, our health professionals in the background, and Diabetes Ireland, especially Anna Clarke for getting the ball rolling in early 2019.
We also had guidance from Diabetes Ireland on how to strategise and we didn’t ask for DAFNE or for Pumps straight away. We had researched what the barriers were, got further information through PQs and then put that information together. We also had a multi-step plan of small achievable goals so we could see our progress and update our asks to reflect the next step. Granted, some things aligned in our favour such as the huge amount of funding provided through the Winter Plan 2019-2020 that allowed an increase in nursing staff.
We are very hopeful that by the end of 2022 Limerick Hospitals Group will be a DAFNE Centre and will have an Advanced Nurse Practicioner in Diabetes Care to facilitate adults starting insulin pumps.
We sincerely thank every member of our community for everything you did to achieve this and always believe that one person can make a difference especially when you have the power of the village surrounding you :-)
Thank You!
