I will admit that this week I was overwhelmed with a sense of mourning for the life we used to have and for all the sadness that will burst it’s dam when we start to come out the other side. However, I continue not talk about Coronavirus lockdown and keep my fingers, toes, everything crossed for the ease of restrictions next Monday, May 18th to allow for meeting up to four friends and family from other households outdoors while maintaining strict social distancing!!! It will be quite some time before I can see my Mum yet but this will be soooo good.
This post is about the Diabetes Ireland Advocacy Group which I am a member of, I wanted to share how it began and what we have achieved in the short time it has been established. Diabetes Ireland members who received their quarterly issue of their magazine at the end of March may have seen a piece on how the organisation and the Advocacy Group are lobbying against the HSE’s proposed motion to have one preferred option in blood glucose testing strips and meters. As soon as it becomes available on the www.diabetes.ie website I will link it here. Please do read it and become informed about it.
So how did the Diabetes Ireland Advocacy Group come to be?
2018 Diabetes Ireland AGM: LtoR Patrick Power, Treasurer, Prof Hilary Hoey, Chairperson, Kieran O’Leary, CEO
The Beginning
In November 2018, at Diabetes Ireland’s AGM in Cork, I proposed a motion to members that Diabetes Ireland needed to communicate their advocacy efforts more effectively and to develop a better strategy to address advocacy issues.
I proposed this motion because I struggled to find evidence of what advocacy activities were being undertaken by Diabetes Ireland, however, in saying that I knew there were many because I have attended their AGM a couple of times and I am in regular contact with staff members about the issues we have in diabetes care in my area. I also felt that Diabetes Ireland, initially, did not lead on the issue of access to the Freestyle Libre and it was a missed opportunity to harness the energy from a huge group of people who were passionate and engaged. The motion was gratefully supported by other members.
The Call for Volunteers
The discussion at the AGM prompted an open call for volunteers to become part of an Advocacy Group and on a bright Saturday morning in February 2019, about twenty people arrived in their head office in Dublin. This first meeting was a scoping and brainstorming session to figure out what we, people with diabetes, needed in Ireland and where to start. The majority of the people who attended were adults living with type 1 diabetes with only a small number of representatives from the type 2 community and from the parents of children with type 1 community.
We divided into three groups to talk about what we all wanted to see in our diabetes care service and after about one hour we came back together to share with the other groups. The most interesting revelation was that there were common themes between all three groups: better access to patient education and psychological support. Each group did have lots and lots of additional items on their lists but these were the top two for every group. It was a very looong list.
We have since formalised the group and elected a chair, Mr Cormac Gillogly, who is also representing us on the National Clinical Programme for Diabetes Working group with two of other group members: Valerie Humphries and Kate Gajewska.
That was well over a year ago! Today, we are a group of 13-15 people with diabetes who represent the voices of people with diabetes in Ireland. This is a huge responsibility for all of us and we all remind ourselves that this responsibility has to go beyond ourselves. We are tasked with bringing the voices of many into that room, we all try to do this as best we can, by listening to people with diabetes on various social media platforms and in our support group meetings, as well as Diabetes Ireland sharing the types of queries they receive through their helpline.
In the short time this group has been active we have made good progress but we do know that this is just the beginning of a very long journey.
Diabetes Ireland Advocacy Group Members
Achievements in one year
Included in our very long list of issues were some ambitions that we felt would be quick to achieve and really make a difference in the lives of people with diabetes.
Driving guidelines to include CGM
The group felt that having continuous glucose monitoring recognized by the RSA as a valid glucose measurement could be achieved quickly and effectively. The group wrote a letter to the RSA which included some word changes. The new guidelines were published in August 2019.
Freestyle Libre Access
The second priority is to advocate for the removal of the age restriction of HSE’s reimbursement for Flash Glucose Monitoring. We did this by calling for transparency in the review process and the inclusion of a survey of users in Ireland which was accepted by the HSE. This review is, finally, under way since December 2019. Of course now that we are in a global pandemic and without a working government progress on this has ground to a halt. I sincerely hope that progress resumes quickly with the forming of a government.
Type 1 Diabetes Clinical Audit
The National Office of Clinical Audit (NOCA) agreed, based on an application from Diabetes Ireland to undertake a national clinical audit of type 1 diabetes and it is envisaged that this audit will begin shortly and this will give us results much quicker than the time it will take to have a fully functioning national diabetes register.
The National Office of Clinical Audit enables the Irish healthcare system to continually improve by maintaining a portfolio of prioritised national clinical audits, measured against national and international standards. By making reliable data available to those who use, manage and deliver healthcare, clinical audits help to refine Irish healthcare, improve patient outcomes, and achieve change at local and national level.
General Election 2020
There was a bit of scrambling to come up with some ideas on how people with diabetes could engage with the general election candidates and start a conversation about diabetes on the doorsteps. We also called for candidates to commit to joining the cross party diabetes parliamentary group which was formed in November 2019 so that conversation could continue and be on our elected representatives minds every month when Diabetes Ireland would meet with them.
The Future
Our next meeting was due to take place on May 9th but for obvious reasons, plus the fact that all health resources have been redeployed to Covid-19 and we still don’t have a government, this did not go ahead. I do hope that we resume our meetings shortly, especially as the health service starts to resume non covid activities.
Diabetes Ireland have dedicated a section of their website for all advocacy news, however, it hasn’t been updated in some time due to the Covid Pandemic. The group hopes that this page will include summaries of our meetings in future.