Note: Before I go into my topic for this week I wanted to share some information on coronavirus COVID-19 and diabetes. Understandably, there has been a lot of concern, anxiety and lots of our organizations have responded quickly to these questions. I created a post on the Thriveabetes blog here if people want to have a look and some of the advice and information.
Stumbling into Diabetes Advocacy
When I joined the Irish diabetes online community #IREDOC in 2010, I had no idea where that journey would take me. In fact, I didn’t think it would take me anywhere but to a better place with my diabetes; all I wanted was to meet other people with diabetes and to learn from them.
Ten years later, being part of the DOC has taken me to so many places I never imagined possible. From support group organiser to blogger to event organising to public speaker and advisor. In this journey, I’ve acquired some labels in an effort to answer a question I am asked many times “what do you do?”.
The first time I had to introduce myself in a group setting at a diabetes conference, I led with the fact that I was a stay at home parent, because that was/is actually my “job”. But, that wasn’t really the question being asked: the question being asked was “what did I do in the diabetes space?” So I started to explain about this event called Thriveabetes that myself and a couple of friends were organising, that I wrote a diabetes blogger and I volunteered. This was really difficult to do in the 20 second time allowed to answer. The word used most at this particular conference was “advocate” and I realised that this was actually an easier way to describe what I did. So I use it.
These days, I find myself in more and more rooms where I am expected to speak for more than just myself - this is a huge responsibility and I try to do it as best I can by listening to my community while highlighting the fact that one person, or even two people, in the room cannot do that well. I did not choose to be this person but I accept it, for now.
I think people stumble into advocacy all the time, no person with diabetes tries to become an advocate for others. It just happens. And most of us don’t have experience in it, so we try to learn from others. With this in mind I decided to share some of what I’ve learned most recently about a local diabetes issue in our area and what I discovered about local advocacy resources.
Research
The journey began a couple years ago when I learned that there was a difference in the level of care between our two closest facilities, but it wasn’t until recently, when the National Survey of diabetes care was published that we had evidence of it. Then, working with local TDs who submit parliamentary questions, we found some of the missing information. We also had guidance from staff at Diabetes Ireland on the most efficient way to get this information.
In July 2019, this information was made public and reported in a couple of newspapers (Thank you to The Limerick Leader and The Irish Times) with a response from our hospital group which provided more information.
Think Local
I used to believe that the only way to improve diabetes services in my area was through national politicians putting pressure on our minister for health to approve funding for the service and the health services deliver the service.
Sometimes, you can feel that you have all your eggs in one basket and the basket has a hole. While attending a diabetes advocacy conference last year I came across the idea of exploring local advocacy resources to help with our issue. We had just had a local election so I thought I would approach a county councillor that I knew to ask for help and advise.
Local resources are often overlooked but are extremely useful in helping your cause and your local county and city council is connected to local health service management. Local authorities in Ireland are responsible for the provision of public services and have both a legislative/policy role and an advocacy/representative role.
Our diabetes issue was a local one that needed to be addressed through our local hospital group as well as at national level, the local resources can assist in highlighting this.
Here’s what happened...
County Council
In June 2019, I approached one of my local county councillors asking for help or advice on how to address a local issue in diabetes care. My councillor asked me for lots of background information on our issue which I had already gathered and then she submitted a proposal to ask the council to write to the minister for health asking for this issue to be addressed urgently.
These meetings are open to members of the public and the press, so when the motion to contact the Minister for Health was proposed and supported, my councillor was interviewed immediately by members of the local radio station who did a follow up interview with me a couple of days later. This led to coverage on a national radio station and more coverage in local newspapers.
HSE Regional Health Forum
One of the supporting councillors is a member of the HSE’s Regional Health Forum West and When our issue was raised they promised to raise it at the next Regional Health Forum meeting.
Every county council has representatives who sit on a HSE Regional Health Fora which were established in 2006, the four Regional Health Fora provide local elected representatives input into the delivery of services in each area and are attended by representatives of local hospital groups and some hospital managers.
Our issue in the midwest is the responsibility of the Chief Executive Officer of the local hospital group who to the National Director for Acute Services and is accountable for their Hospital Groups planning and performance under the HSE Accountability Framework. By raising our issue at this meeting it is presented directly to the relevant CEO.
There has been a bit of a hold up in progress because of the General Election and now a terrible virus but we are making progress slowly but surely.
The next meeting, which may not go ahead now, was due to take place on 24th March with our questions submitted and awaiting replies.
Not just One County
We knew from our research that the issue in Clare also affected people with diabetes in surrounding counties and the Clare diabetes group is closely linked to the Limerick support group, who have also been collaborating with Limerick City and County Councillors, our Hospital group is hearing how important this issue is for its patients with diabetes from multiple fronts and we will continue to help our councillors advocate on our behalf.
I do know that Diabetes services are not a high priority at the moment, nor should they be, so we have hit the pause button for the moment to concentrate on taking care of ourselves and our loved ones. But when the nation is on the road to recovery, we will be back with a bang.