On the 25th June 2018, two years ago, this happened! The National Clinical Guidelines (NCG) for Adults with Type 1 Diabetes were launched and endorsed by the then Minister for Health, Simon Harris. However, since then there has been no steps taken, that I’m aware of, to implement these guidelines. Last week, I chatted with endocrinologist and chairperson of the guideline committee, Dr Kevin Moore about the launch and what has not happened since.
Minister for Health, Simon Harrie launching the National Clinical Guidelines for Adults with type 1 diabetes on 25th June 2018
Having this document was a huge step in diabetes care! We finally had a roadmap for what we needed as people with diabetes depending on insulin, the core of which is based on structured education for all adults diagnosed with type 1 diabetes (see 3.3.1 of Education and information). The guidelines also provided a clear pathway for access to insulin pumps and glucose sensors.
3.3.1 Offer all adults with type 1 diabetes a structured education programme of proven benefit, for example the DAFNE (dose-adjustment for normal eating) programme. Offer this programme 6–12 months after diagnosis.
However, many people in the room that day knew that this was the easy part, that when the guidelines were published with no person or department responsible for their implementation we are now playing a game of hot potato.
Interview with Dr Kevin Moore, Consultant Endocrinologist
When writing this post I reached out to the NCG Committee chairperson Dr Kevin Moore, consultant endocrinologist who has been passionately supporting improvements for people with diabetes since before our paths crossed in 2015 at our first Thriveabetes conference, to talk about this two year anniversary.
The fundamental element that these guidelines were created around was having equal access to formal diabetes education specifically mentioning DAFNE: Dose Adjustment For Normal Eating. The name of the course says it all really: adjusting your insulin doses so that you can live, almost, normally. For people with diabetes navigating the 42 factors that impact blood sugars THIS information is CRUCIAL!!!
Gráinne Flynn and Dr Kevin Moore, consultant endocrinologist at the launch of the National Clinical Guidelines for Adults with type 1 diabetes.
Equal Access to Education
Dr. Moore firmly believes that if you don’t have access to this you are stumbling around in the dark and yet most adults with type 1 diabetes do not have access to this basic fundamental of diabetes care.
There are 33 public diabetes clinics in Ireland: 8 of those clinics provide DAFNE when staff are available, 11 clinics provide a similar course called BERGER, leaving a total of 14 clinics providing suboptimal diabetes care to people with type 1 diabetes.
Recently, A fellow person with diabetes wrote a post about how doing a DAFNE course improved his diabetes management so much even though he had been living with diabetes for 19 years. You can read his experience here. As myself and Dr Moore chatted on the phone we talked about how DAFNE makes such a huge difference in the lives of people with diabetes but he also said from his personal experience that “Educated patients are happier, more confident, more skilled, have a better understanding and are often more engaged in their management. They clearly have a greater sense of control and many of them have better control. Our job is so much easier if people with diabetes have access to diabetes education”.
“Our job is so much easier if people with diabetes have access to diabetes education” Dr. Kevin Moore
Now that health services are starting to resume and we are getting back to something resembling “normal”, we both feel it’s time to start the conversation again with our health service and our politicians on investing in diabetes care.
What can we do?
“It saddens me to say it, but in Irish healthcare, the squeaking wheel gets the oil. In a time of limited resources, if people with diabetes don’t complain about their substandard care, nothing will change.” Dr Kevin Moore
Hospital management needs to hear from People with Diabetes
Dr Moore added, “It saddens me to say it, but in Irish healthcare, the squeaking wheel gets the oil. In a time of limited resources, if people with diabetes don’t complain about their substandard care, nothing will change.” Our hospital managers, CEOs, and hospital group CEOs need to hear from people with diabetes if there are gaps in care. They need to hear that the staff required to provide structured diabetes education are essential staff members. That running a type 1 diabetes service without a dietitian or diabetes nurse specialist with a qualification to deliver structured diabetes education is not acceptable. Hospital managers and CEOs have a duty of care and as public servants are obliged to acknowledge and act when a service user highlights an issue.
All contact emails for ceos can be found on the HSE’s website here.
Don’t forget to Think Local: County Councillors!
Many people contact their national representatives to highlight local issues but most forget that our local county councillors also are our advocates and can support a motion to contact a minister for health. Also, most people are not aware that our county councillors serve on a HSE Regional Health Forum where questions can be raised about local services directly with HSE regional managers and that you can ask your councillors to submit questions to your hospital group ceo here too.
Find out what county councillors are part of the HSE’s Regional Health Fora in your region here.
National TDs
Now that we have elected TD’s and possibly almost a government there will be a somewhat return to Dáil business as usual so it’s time to remind our TD’s to commit to joining the Diabetes Cross Party Parliamentary Group and to start to address the many needs of the diabetes community by approving the funding for “An additional Diabetes Nurse Specialist and a Dietitian is required for every hospital diabetes team in the country”.
Find out who your local TD’s are here and how to contact them.
As Jack Charlton said: Let’s “Put ‘em under pressure” and move diabetes up the list of priorities.