A couple of weeks ago, Diabetes Ireland organised a free type 1 diabetes evening in Limerick. It was so well attended by the Limerick, Clare and Galway type 1 diabetes community and it was so nice to see so many familiar faces as well as some new ones.
Here is my personal review of this Type 1 Diabetes event in Limerick.
The main topic of the meeting was the psychological issues that can arise after a diagnosis of type 1 diabetes, especially in adults: from the impact of the diagnosis, to the huge responsibility we place on ourselves when we don’t have any control over some the elements that influence glucose/sugar levels.
The evening started with a warm welcome from Pauline Dunne, a diabetes dietitian and diabetes educator with Diabetes Ireland. She then introduced Dr. Eoin Noctor, Consultant Endocrinologist from University Hospital Limerick who spoke about managing type 1 diabetes through the decades. He was very enthusiastic about the technology of continuous glucose monitoring and the benefits to both patients and consultants. And also, about the new hybrid closed loop insulin pump that we hope to have in Ireland soon.
Dr Noctor acknowledged that services in the UL Hospital group are not what they should be and was asked in the Q&A session about how we could help him to get the services we need. HIs answer was to share our stories with anyone who will listen: TD’s, Hospital management, etc.
Pauline Dunne also suggested that if we were to each engage with Diabetes Ireland and share your experiences with them, they would have a stronger mandate to campaign for these improvements. They have access to facts, figures and statistics, they just need us to come forward with our personal experiences to strengthen the cases - I thought this was an important Take Home Message!! And needed to be repeated. We have actually seen this done repeatedly in Donegal, where the local diabetes support group join Diabetes Ireland to meet with representatives from the HSE and TDs to get results.
Repeated Take Home Message:
Diabetes Ireland have facts, figures and statistics but they need us to come forward with our personal experiences of diabetes care to strengthen the case for improvements.
After the break we heard from Dr Mark Davies, Clinical Psychologist from Belfast City Hospital. As part of his introduction he gave us a little background (and useful) information about how the NHS is set up in Northern Ireland: There are a total of 6 Health and Social Care (HSC) Trusts in Northern Ireland. He said there is one diabetes psychologists in each of the 6 trusts! This came about when in 2003, there was a bit of money left over (boom times) to be allocated for diabetes services and all the healthcare professionals tried to decide where to spend it: the endocrinologists wanted more endos, the diabetes nurses wanted more nurses, the dietitians wanted more dietitians…. You get the idea. They were in stalemate and decided to ask people with diabetes where they would like the cash put and there was a resounding response for psychologists. Hmm, go figure that one!
This was my third time to have the opportunity to hear Dr Davies speak and yes I know all the answers to the questions he asks the audience but I still come away with something new from his presentation.
The majority of his talk focused on how we feel, or are made to feel, that we are 100% responsible for controlling our glucose levels and that our prize is a decent HbA1c. Yet, we realise that we cannot have 100% control of all the factors that influence glucose levels. We also tend to focus on the HbA1c “prize” rather than the things we can control and the process to get us to the decent HbA1c.
I loved the way Dr Davies included us in his presentation by asking us questions. There were 4 or 5 people who had lived with type 1 from 40 to 53 years and they were asked what advice would they give to someone who is only in their first decade. There was great participation from the group throughout the evening.
The last ten minutes of Dr Davies talk focused on the trauma of diagnosis and how it can affect us all differently but that everyone has to find their own way through it and that as a healthcare professional, they can only support you until you make it through.
I was chatting to a friend afterwards who said that in all his 25 years of living with diabetes he had never, ever been asked how he felt about it and he found the event enlightening because it had been acknowledged.
Some of the messages that I took home with me from Limerick were:
Quantity of life is important but quality of life is equally important.
Focusing on “winning” (aiming for a decent HbA1c) creates an inherent paralyzing fear of failure and that “Winning” in this way just creates relief. It doesn’t allow us to say “well done” when we have done well.
Thank you Diabetes Ireland for organising a great evening!