The National Clinical Guidelines for Adults with Type 1 Diabetes were launched by the Minister for Health, Simon Harris on Monday the 25th June 2018.
I was hugely honoured to be invited to the launch and to be in the company of fellow people with type 1 diabetes who contributed to producing the finished product. I was also impressed by all the speakers who expressed huge commitment to making sure that these guidelines are implemented and that the resources needed are available to all of our diabetes clinics to implement them.
The National Clinical Guidelines for Adults with Type 1 Diabetes are available to download here.
WHAT ARE THE NATIONAL CLINICAL GUIDELINES FOR ADULTS WITH TYPE 1 DIABETES AND WHY SO IMPORTANT?
These guidelines and this document provides “evidence-based, practical advice to” all who work in diabetes health care, “on the steps necessary to support adults with type 1 diabetes to live full lives and avoid the acute and long-term complications of both the disease and its treatment.”
This document provides our diabetes health care teams and us, adults with type 1 diabetes with a guide on the tools and the necessary knowledge we need to be supported on how to successfully self-manage our diabetes.
It’s a “What an Adult with type 1 diabetes needs from their health care team” bible.
- IT'S A FIRST
Up until now, “Ireland has not had clinical guidelines for the management of adult patients with type 1 diabetes.”
We finally have a document that details what care and treatment we should get from our health service as adults with type 1 diabetes. For me, personally, I’ve been waiting a long time for this document, at least eight years, when I first volunteered to take part in an advocacy initiative called “Diabetes Action” started in 2010 by Diabetes Ireland.
Before now, people with diabetes had no way of finding out if they were receiving the care they needed and clinicians had no guide on what they should be providing. Now we all know and we should have these guidelines on all of our bookshelves to refer to when we needed.
- SAME CARE EVERYWHERE
Secondly, As most of you know, diabetes service varies hugely across Ireland. Some people with type 1 diabetes have access to diabetes education, only some have access to dietitians, only some have access to insulin pumps. Right now, what is available to you is determined by where you live or how far you are willing to travel.
“It is hoped that the publication of this guideline will be a driver to standardise care nationally and as a result patient outcomes will improve and the incidence of diabetes related complications will decrease.”
This document gives clear guidelines on who should be recommended for insulin pump therapy and continuous glucose monitoring instead of the contradictory information that comes from all the different diabetes clinics.
- MAKES DIABETES EDUCATION A NUMBER 1 PRIORITY
Diabetes Ireland’s Press Release (full Press Release here) states that “It is accepted that group education for individuals living with type 1 diabetes results in improvement in quality of life, diabetes knowledge and diabetes control and as a result less diabetes complications.”
Yet, “only 409 adults with type 1 diabetes were recorded as having attended a diabetes education course in 2016”. There are approximately 20,000 adult with type 1 diabetes in Ireland.
“Ms Niamh Downes, a person living with type 1 diabetes and founder of the “Diabetes in Ireland” Facebook community group, said, “Given how important Education is to support self management, I think it should be “prescribed” rather than “offered”. And that every effort be made to make it accessible for the adult with type 1 diabetes, such as providing a medical certificate for workplaces. People with diabetes are experts in living with Diabetes but need education/support. This should be immediately available as a motivated educated patient will have much better outcomes.”
DETAILS OF THE LAUNCH EVENT
At the launch event, we heard from four speakers who all focused on the need to make the guidelines real life for people with diabetes.
Our first speaker was Dr. Kevin Moore, endocrinologist and chair of the National Guideline Development group. He spoke about how people with diabetes deserved more from their health service; more support, more education and more empowerment. He said, “Life is harder with type 1 diabetes”, it just is, and “You can’t live with Type 1 diabetes and not have a form of structured education”. And yes I believe, it’s like putting someone in the driver seat of a car without giving them any lessons or a theory test.
He also expressed his deep gratitude to Shane O’Donnell and Kate Gajewska, who were part of the National Guideline Development Group as people with type 1 diabetes. Here's a guest post Shane did for Thriveabetes in 2016.
Kate was a speaker at Thriveabetes 2018 and you will be hearing more from her as she begins recruiting for her PHD study on insulin pump uptake among adults in Ireland.
Sir David Haslam, chair of the NICE UK (National Institute for Health and Care Excellence) spoke next about the collaboration between the National Guideline Development Group with NICE and a brief history of NICE. He also impressed upon the audience that they could take a minute to enjoy this moment but then to get back to it :-)
“This is the first sentence not the book. Invite me back when you’ve completed the book”. You bet, Sir David!
Our next speaker was Professor Sean Dinneen, Clinical Lead, National Programme for Diabetes. He shared a story of his first year as endocrinologist in Galway, 13 years ago, where he met a young woman with type 1 who was admitted into the hospital who had lived a number of decades with type 1. He said she was in serious trouble and was probably only going to survive if she had a Pancreas/kidney transplant. She’d never had any diabetes education. This week, he met another young newly diagnosed adult with type 1 and he said I want to make sure his story is going to be very different.
Dr Moore and Professor Dinneen are two of the many people who work in diabetes who carry a torch within the HSE on our behalf and are very much heroes in my eyes. Plus, they can’t say enough about Thriveabetes so I may be a little biased.
The next speaker was the Minister for Health, Simon Harris. My concern about Minister Harris’s speech was that he would focus on how much diabetes costs the HSE and some shallow words about doing better. And he did a little, but then, he personally endorsed the guidelines and said he was fully committed to seeing them implemented.
I know we’ve been here before and heard the words of action but I truly believe that this time is different and that because we are all working together, especially the diabetes online community, to make this happen!
SO WHAT’S NEXT
First, our diabetes clinics need more nurses and dietitians for diabetes recruited and then they need training in the delivery of DAFNE. To make this happen the HSE needs to include estimates additional nurses and dietitians in their pre budget submissions for 2019.
This would also be a simple effective option that would bring cost savings almost immediately for the HSE as it would reduce hospital admissions for people with type 1 diabetes through resulting in better informed and more supported adults with type 1 diabetes.
Once funding is approved recruitment can begin in 2019.
THE MOST IMPORTANT CONVERSATIONS HAPPEN AFTERWARDS - A FreeStyle Libre UPDATE
As always with events of this nature the most important conversations happen afterwards. The launch of the Guidelines was a huge advance in diabetes care and I was anxious to hear that they would become a reality for me.
But as you all know there was one other issue that weighed heavily on my mind and that is access to the Freestyle Libre for adults. And despite what a lot of you all think I'm not an extrovert so when Minister Harris looked like he was approaching me I had absolutely no idea what I was going to say!!! You can't imagine the relief when he actually brought it up!!! Yes!! He has been listening and hearing!
Thank you Anna Clarke from Diabetes Ireland for taking this snap.
I was really surprised that he agreed that it was “a no-brainer” and yes those were his words. I shared how having similar technology has helped me manage my diabetes to reinforce the point. Dr. Anna Clarke, who thankfully was standing beside me, very cleverly, mentioned that with the new guidelines recommended checking blood glucose levels “up to 10 times a day in specific circumstances makes the Libre even more cost efficient for adults, yet again.
He seemed very much in agreement and said he would look at what he can do to move on this sooner than the 12 months stated by the HSE. I came away from the discussion very positive that this issue will be resolved soon!
So fingers crossed, keep sharing your diabetes stories, keep emailing your TD's and lets get this across the finish line.
It's good to know who is on your side. But also to know that those who seem like their are not just haven't heard your story yet.