Some Statements were a Bitter Pill to Swallow while we Strive to Thrive with Type 1 Diabetes

some-statements-were-a-bitter-pill-to-swallow
The speakers at Thriveabetes shared their experience and insight into their profession and / or their lives with Type 1 Diabetes. Sometimes funny and sometimes sad. Each touched a place in us that showed us that
they knew and understood exactly what we were all living with 24/7/365.
 
 
 
Sure of course they did……
 
It was a type 1 diabetes conference for us, and about us, to empower and enlighten us about treatments and technologies that would help with our daily management.
We also heard about the phychological impact of living with type 1 and how we could Recognize diabetes burnout and deal with it. All of which is very valuable information by a fantastic line up of speakers.
 
 
However I had the uncomfortable misfortune of sitting through a talk by a HSE professional who stated the following.
 
Statement:
We have a really good health service !
 

 

Fact:

Even Leo Veradker apologized last  week for our health care system after the prime time TV investigation into what goes on, saying he felt embarrassed for his colleagues. The media publishes fact daily the shortcomings in our health care system.
  

  

Statement:

By restricting blood glucose strips for people with Type 2 Diabetes who are treated in the following way:
  • By healthy diet and exercise – 0 strips Or 1 pk for 6 months.
  • On oral medication – 1 box per month.
  • Oral meds with risk of hypo – 2 box per month.
  • Type 2 using insulin – no limit.
 
The HSE spent €46.8 million has been spent in blood glucose test strips in 2014 and have saved between 5 – 7 million euro by putting the following restrictions in place.
  
Where did this saving go ?

  

Statement : 

It wasn’t actually seen, it disappeared into a sort of black hole.

  

Fact: 

This was a conference for people type 1 diabetes.
The complications in people with type 2 diabetes that will follow from these restrictions in the future will likely cost a lot more than the saving they are making. Then they are going to have to gain access to their sort of  black hole and pay for it.

 

Statement:

Neither myself or my family have diabetes, he stated as he showed a slide of his family.
Iv no idea what point he was making here. But I continue to wonder since ?

  

Fact:

The future may change that, you just never know, but for now this just means you have no idea what it’s like to live this life that we live.

 

Statement:

He stated that After practicing his talk on his students, he was asked by them was he “actually” going to stand up and say these things?
 
  

Fact:

That was when alarm bells should have gone off in his head so he could rein it in. But no, his ego wouldn’t allow that and he just had to tell us all about the savings he had made.
 
 
 
The headache brought on by these statements, and by me not verbalizing my feelings when hearing these statements had become so bad that I felt sure the pulse on the side of my right temple must have been visible to those around me. The pain and throbbing from stress, was so bad that the vision in my right eye was no more than a cloudy blur.
 I did what I could to stay non verbal for as long as possible but when the slide appeared with the Libre on it my patience ran out.
 It was as if it was some sort of reward for children and teens to have it reimbursed, and I think it was to show that this is why the Libre could be reimbursed by the HSE at all.
 The point, that it was all from the sacrifice that our Type 2 colleagues were having to make, was a very uncomfortable feeling.
 I did state at that point that the fact of it being made available under reimbursement for children and teens was discrimination against Adults who also needed it and I asked how can they justify their decision when the cost of the Libre Vs regular finger pricking showed a very small saving to the HSE.
 I also asked would teens who were to be given it, have it taken away again the following year because they reached the age limit?
 “He looked uncomfortable” and he had made me feel the same way.
 I had a lot more to say about our health service but others needed time to speak too so I never got the chance.
Liz Murphy also managed to get a small window to make some important points. Well done liz, it wasn’t an easy situation.
  
A) There continues to be “NO” foot screening  programme in Kildare for people with diabetes.
B) Adults don’t have easy access to pump therapy as a normal option.
C) There is still no standard model of care for adults with Type 1 Diabetes.
D) Despite us being at higher risk of cardiac complications, there is no standard screening for this either.
 
 By the time I get to my own clinic appointment in August, it will have been 14 months since my last clinic visit, but yet we have a great health care system ….. in his opinion……
 I consider what this man was saying to myself and my fellow Type 1 colleagues to be an insult to our intelligence.
 I strive to thrive with my type 1 diabetes using whatever tools I can get my hands on and by connecting with others, all with a purpose to empower me to keep striving to thrive with my T1D.
 I advocate to try and play a part in bringing about change for the better for all of us.
 I feel very strongly that if someone is going to go out on a limb with insensitive and thoughtless statements like these to a room full of people who live every day and night with type 1 diabetes, then they should also be prepared to stay out on that same limb and feel the anger and frustration people living with diabetes are feeling in this current climate.
 
 
The person making these statements was professor Sean Dineen who took over as lead for the HSE’s Diabetes Clinical Programme 2016.
His interests include developing and evaluating programmes of self management education for people with diabetes and developing optimal models of community based diabetes care.
 
 
He didn’t empower me to strive to thrive with type 1 diabetes.
However he did empower me to want to fight him, his nonsense and his attitude towards our health.
 
 
 
His “proud statements” were certainly a very bitter pill to swallow, especially as we hold a petition of over 16,000 signatures to prove to him and his colleagues that we are NOT in agreement with him or the HSE’s statement re: the Libre reimbursement debacle.
 If anyone holds any information on “the black hole” please feel free to share it with us.
 
 

Footnote:

NO ! this was not the time or place for this talk by him……
The problem however, with us staying silent for this kind of thing, is that silence can be seen as approval or agreement, and we cannot have that. What was said by those who did actually get to speak, needed to be said…….
 
  
 
 
 
 
 
 
 
 
 
 
 
 
 
  
Me ! Reflecting on my yesterday ……….
 Im Davina Lyon, I’m not a professional, just a person With Type 1 Diabetes sharing experience.

*IMPORTANT INFORMATION*
For those who think diabetes is caused by an unhealthy lifestyle let me clarify a couple of things.I have type 1 diabetes. It’s an autoimmune disease. Nothing I did, or didn’t do caused it and nothing I do will cure it. There’s is currently no cure for Type 1 diabetes.

Type 1 Diabetes happens because our own antibodies attack and destroy an organ in the body. it’s an autoimmune response where antibodies that normally fight disease mistake a part of our body (the pancreas in this case) as foreign and attack to destroy it. When those antibodies attack the insulin producing islets in the pancreas we stop producing insulin so we need to inject or pump it.

Without insulin a person with type 1 diabetes would die. At present it is not known what causes this to happen, and there is no cure.
A person with Type 1 diabetes MUST inject or pump insulin to stay alive.

There are many factors that contribute to a diagnosis of Type 2 diabetes so pre judgment of a lifestyle choice is unfair at very least.
A person with Type 2 diabetes, while still producing their own insulin for various reasons their body cannot use it correctly or efficiently.
These people are generally treated with oral medications and sometimes with insulin injections.

Please support me to help raise funds for
Thriveabetes or Diabetes Ireland.

Thriveabetes is completely organised by volunteers. The financial cost of Thriveabetes is subsidized through fundraising, event ticket sales, sponsorship and an adjoining exhibition.
If you would like to make a donation to Thriveabetes – we appreciate every single donation.

http://thriveabetes.ie/index.php/donate-2/

Diabetes Ireland have been a huge support to me and our Type 1 Community.

Diabetes Ireland Fundraising link :

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