Archive for Diabetes vs Depression/Diabulimia

Suffer The Little Children…

I’m a little annoyed.

Maybe it’s all the shenanigans regarding governments and elections of recent times…It’s just made me recall all of the promises and deals that were made relating to an Insulin Pump Scheme that would be applicable for children with IDDM up to 18 years of age before the 2007 election.  

I was first contacted by JDRF Head Office last year, before our Federal Election. A small group of parents and I were asked to contact Mr Howard. Others were pleading with our Members of Parliament to take into consideration how many children with diabetes don’t have insulin pumps, and how desperately they needed them.

On International Diabetes Day,2007, Mr Howard historically announced that, if re-elected, he would provide $22 million to JDRF, to ensure that many children, and especially the ones who truly needed a pump, got one.

Despite our inital frenzy, at this stage, Mr Howard was lagging in the polls, so Kevin Rudd and team were our next target.

We rang Labor party hotlines, we wrote to Kevin personally, we even joined his Facebook Page. JDRF Youth Ambassadors followed him around and spoke of their need for an insulin pump program to combat their ailing health.

He knew that this was something that advocates and JDRF expected him to at least match, or maybe supercede the amount promised by Mister Howard.

So, Kevin Rudd became our new Prime Minister, and we said goodbye to our 22 million dollar promise.

Nothing was mentioned about Health, nor Childhood Diabetes in his victory speeches. I was silently worried.

He made grandiose promises to amend the public hospital debacles, and even establish doctor’s surgeries replaced by state-of-the-art medical centres, where you could see your doctor, as well as have all of your blood work, x rays, physio and dentistry taken care of in the same complex.

Australia nodded and agreed wholeheartedly. This was a man who cared for the little Aussie battlers.

However, in that election promise, there was no mention of a insulin pump grant.

In the meantime, Lance’s health took a turn for the worse. His endocrinologist spoke to me about the possiblity of getting an insulin pump.  When I bought up the possibility of obtaining one through the Insulin Pump Grant, he raised his eyebrows, stopped writing frantically, and shook his head. Hot, angry tears spilt down my face.

I began looking around and finally settled on a Medtronic pump.

The rep, Louise, and I gained a fantastic rapport. 

.                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                      totally  I really loved the way she communicated with me and understood how desperately a pump would be beneficial for Lance. I mentioned the insulin pump grant to her. She grimaced, and said something along the lines of, “If it does happen, it won’t be for years, and it wouldn’t be anywhere near the amount promised by Howard.” I sighed, disheartened, and continued listening.

 I put DAYS into writing letters to different influential people-some responded, but it all depended on the upcoming election. As soon as we knew that the Labor party were victorious, I began furiously writing to various Health Ministers, Members of Parliament, and King Pin himself, without one reply.

Suffer the little children..."

Suffer the little children...

Just before our annual budget was released in May, our very good friend, Gareth Eldershaw, (Gareth completed an interview for www.whydidtheinsulindie.com earlier this year), wrote to Arch Bevis,Federal Member for the Seat of Brisbane.

This is what Arch wrote in his comments regarding the budget results.

Firstly, he made reference to the letter that Gareth had written to him, complete with Jelly Baby Lapel Pin. (Budget night happens to coincide with Jelly Baby Month, so we make it a point that each MP is sent a pin and request that they wear it on their lapel on the night that has the Nation at a standstill.)

“May is a special month for JDRF as we try to make the community more aware of Type 1. As you know the jelly baby is a sort of motto that represents a vital aid to help us recover from a “hypo” when our glucose levels are too low. There’s a little blue guy in the envelope that I’d like to give you and ask you to wear in May and especially on Budget night.”

I can tell Gareth that I am wearing his little blue guy on my lapel, as I did last night during the budget. Gareth went on..

” We talked about the grant to fund the reimbursement of insulin pumps for kids under the age of 18. 3000 pumps for all these kids (over a 5-year period) would cost $35m. It’s a lot of money I know, but you know how much it will save the government in the future? Of course it will make life a bit more bearable (and safe too) if kids can use insulin pumps.”

I was very pleased to have been able to ring Gareth up today and say that in last night’s budget we made a step in that direction. I do not pretend that we have gone as far as we need to. I want to see the opportunity to benefit from an insulin pump—and not everybody with diabetes is suited to an insulin pump—be made available to all. But I do applaud the Minister for Health and Ageing, Nicola Roxon, for her efforts in recent times in ensuring that the budget includes a provision that will see about 700 young Australians gain access to an insulin pump. I look forward to continuing to work inside government now rather than from the opposition benches to try to have that program extended.

The grand result?? JDRF were given $5.5 million, to be dispensed over three years, to provide insulin pumps for 700 children.

After much planning and deliberating, JDRF will begin accepting applications for contributions towards the purchase of an insulin pump. It will be based on a financial means test, and the most that can be received per child is $2500. Families without health insurance can begin applying for insulin pumps for their children in November.

So, with the average insulin pump costing $6000, (notice, I say average ), and with approximately 1.7 million dollars provided each year, it won’t take long before all of the money is dispensed. If you are a suitable candidate for the $2500, what happens then? How do you get the rest of the money? Fundraising is about the only real option,and we all know how difficult that is.

I’m really not trying to look a gift horse in the mouth.

I’m so grateful that we were acknowledged at all, the heart and soul of some 50 parents went into sharing their children’s private stories regarding life without an insulin pump. I’m sure PLENTY of other charities tried their hardest to get a financial boost without succeeding, so I really don’t want to appear like I’m complaining or ungrateful.

I guess it just smarts a little that we could have had 22 million dollars.

It hurts to think that some families will qualify for the $2500, but will be totally stuck when it comes to raising the rest. Not to mention those who receive $750-I mean, what happens there?

  • Knowing JDRF Australia, they may have some amazing fund raising venture up their sleeve, but in all truthfulness, does it leave families any better off than before this money was offered? Personally, if I hadn’t have paid for Lance’s pump outright, and I knew that there was NO way I could afford to pay for the outstanding amount, I think (and only if Lance’s health was in excellent shape), that I would forfeit the opportunity. JDRF staff are going to have to make some really difficult decisions without being biased to families they know well and adore.

 Vote for whomever will give you a better Health Care System, America!

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Three Little Questions… One Big Problem… You Can Help!

I’ve invested quite some time researching and learning about a medical condition associated with Type 1 Diabetes.

I realised that I need your help to complete an interview and report I will be publishing in the semi-immediate future.

 I am asking three questions, and, in an attempt to create awareness AND provide help and hope for the sufferers of this condition, it would be of much value, and deeply appreciated, if you could please leave an answer to one, two or all three questions. 🙂

1. Have you ever heard of, or read the term, “Diabulimia?”

Now..that was easy! You can answer yes or no, or maybe you might like to elaborate. ( Yes/No is fine, though. )

If you didn’t know the answer to Question 1, you may stop HERE.

2. What age group/sex would you expect the majority of people with Diabulimia to fall under?

Just a M for Male or a F for Female and some numbers relating to age group will be dandy. 🙂

3. Can you give three adjectives or phrases to describe what the terms, “Diabulimia” or “Diabulimic” mean to you ?

That’s it!

If you do decide to help me with my project, I would be so grateful for just a minute or two of your time with some answers.

And, if you are now curious as to what I’m up to..watch this space.

Any answers submitted will be strictly confidentalno answers will be approved for publishing on this blog, or will any names/titles used in the report. These questions are for statistical purposes only

I am the only person that will see the responses.

Thank you so much for your help and valuable answers!!!

 

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We, The Unidentified.

Bravo, JDRF Australia!

THANK YOU for showing us the facts on paper. 🙂  Your team conducted a broad scale survey about what it’s REALLY like to live with Type 1 Diabetes, and you came up with some staggering results. 

Considering that Australia is the most obese nation in the world, and there has been millions of dollars poured into advertising for weight loss,( with the fearful threat intertwined of becoming a “hearty” candidate for type 2 Diabetes), it appears that all of the amazing advocacy work that we thought was leading us to finally establishing an identity of out own has lead us back to sqare one.

JDRF said that from the 2300 respondents (which was aimed at all age groups-adults with type 1 diabetes, parents with a child/children with type 1 diabetes and other people with a personal connection to type 1 diabetes-family, friends, co-workers, sent a very strong message that the current focus on obesity in discussions of diabetes had created a “blame culture”, which in turn causes misery and depair for families living with Type 1 Diabetes, as reported in “Update“-The Official Newsletter of JDRF Australia.

THE FINDINGS.

ADULTS living with Type 1 Diabetes reported a common complication that accompanied their condition-depression and anxiety, with 25% reporting a clinical diagnosis during their time living with diabetes.

Even more concerning were results indicating that this debilitating condition was not being managed as well as possible by health care professionals, with only 7% of respondents declaring that they had been referred for psychological support.

Heartbreakingly, depression or anxiety was ALSO the most commonly reported complication for children with type 1 diabetes, with a staggering 1 in 10 declaring this dreaded complication.

(Reassuringly, all of the candidates had been referred to a psychologist or other specialty care.)

THE HEALTH SYSTEM.

Agasp… MORE than 50% of adults and 40% of parents reported that they had experienced a Health Care Professional demonstrating a blatant lack of knowledge about type 1 diabetes.

(I shuddered as I read this statement in particular, recalling a registrar in hospital, neglecting to read the nurses’ notes, and almost overdosing Lance with a double dose of Novorapid. 30 minutes later, I discharged Lance from the hospital, fully aware of the risk I was taking-however, as his fulltime carer, I felt he was at more risk in that ward than he was in his own cosy nest at home. Hate to say, ‘I TOLD YOU SO”, but in this instance, I was right. Also, how could I POSSIBLY forget the after hours doctor who told me to “break Lance’s “tablets” into halves, and only give him a half dose while he was unwell, despite having “TYPE 1 DIABETIC” emblazoned in red on his file!!!!!! Not to mention, I alerted the doctor,by stating;”I AM PRESENTING MY SON WITH IDDM TO YOU FOR A SECOND OPINION REGARDING HIS INSULIN DOSES….!!!!!!”)

30% of adults also reported that diabetes was not the first diagnosis when they became ill.

Almost 20% of adults did not consider their diabetes to be well managed, however, around half of repondents reported no complications, and no emergency room visits since diagnosis.

FAMILY, FRIENDS AND PUBLIC.

Almost 30% reported feeling extremely worried about having a hypo at work or school.

The good news was that just over half of the respondents felt confident that their fellow workers or school friends could assist in an emergency.

THE DEVASTATION.

Nearly HALF of all parents reported being made to feel that their child’s type 1 diabetes was their fault, due to the constant confusion between type 1 and type 2 diabetes. EVERY PARENT  HAD AN ENCOUNTER RELATING TO AN INSENSITIVE, IGNORANT OR DELIBERATELY CRUEL REMARK ABOUT DIABETES, causing heartbreak to them or their child.

Source:

JDRF Update newsletter, Winter edition, 2008.

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