Becoming Politically Re-engaged

 

 This is an original poster from the miners’ strike in the UK in the Eighties. Growing up in a working class area of Scotland through the eighties, seeing what Margaret Thatcher did to my country : the miners in my town, poll tax, nuclear power stations nearby to name but a few, I became very politically aware though my teenage years and took part in marches for CND, university marches when grants and funding were cut and more. I, like many around me, had strong opinions on everything! “Maggie, Maggie, Maggie! Out, out, out!”, was our favourite chant, as we  waved our banners and looked forward to catching up later in the student union.


Fast forward several decades and here I am, a middle class mammy in NSW, Australia. I watch politics from the sidelines and don’t feel especially engaged. I occasionally shake my fist at the television screen and my children roll their eyes as they sit through yet another doco on the ABC. The recent Independance movement in Scotland ignited my interest and rekindled those feelings somewhat but living on the other side of the world removed me from the real passion felt by my family there.

Recently however, I felt a spark and went with it. When my son was diagnosed with Type 1 diabetes, I never imagined that this would re-engage me politically. The fight to get pump consumables on the PBS was before my son’s diagnosis, and I salute those who worked hard for this to be put in place, but we have come in at a time when a  push is on to have CGMs PBS listed (for those outside Australia, this means having the Continuous Glocose Monitor subsidised to make it more accessible). I wrote emails to two local MPs. Read it Here.

Both members sent letters on my behalf to the Health Minister Sussan Ley and received replies which they then forwarded on to me. I received a phonecall from the assistant of one member, asking me more about my son and why I had written. This was such a positive experience.

The second member has been fantastic. I am in his electorate, as is my son’s school. He emailed me on several occasions and followed up when I corrected some of the information in one of the emails. I took a chance as I felt, in these emails, that I was communicating with a real person, no spin, just honesty. I told this member that in our local area , which is in his electorate, there is an amazing diabetes clinic which helps those old and young, with all types of diabetes.

This wonderful group of people, and in particular, our diabetes educator, go above and beyond their duties. They always are there for all those in their care and encourage us to contact them for advice and seek help with areas such as adjusting insulin levels. They treat our son so well. He is the focus of what they suggest and his feelings and opinions are always sought. I suggested that the local member should go and visit them and thank them on behalf of those they help, day in day out. He asked me for the phone number and names of those who worked there.

Imagine my surprise today, when he emailed me to tell me he had taken in some morning tea, caught up with those who were at the clinic and thanked them for their work. It may not seem like much, but that gesture for me made everything worthwhile!

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Letter to my MP – Advocating for CGM funding

My name is ……. I live in ……… My son was diagnosed with Type 1 diabetes almost two years ago. He spent the week of his 13th birthday in hospital learning how to manage the reality of living with this disease.

He is an active, busy boy who plays cricket and rugby union for his school teams. In his free time he referees and plays touch football as well as playing rugby union and cricket. He rarely misses a day at school. Sometimes he battles through really high blood glucose levels to get his assessments done on time. He does quite well academically. He does not let his diabetes define him. In the background, the management that goes into keeping him at school and in sport is huge. He is, in my opinion, an invisible hero!

His Blood Glucose Levels can fluctuate from day to day for so many reasons (sport, heat, cold, the stress of exams, a growth spurt are all possible causes). We are in contact on a weekly, and sometimes daily,  basis with our incredible diabetes educator and almost every week the amount of insulin my son has to have is changed to avoid his levels going too high or too low.

We test him through the night several times a week and have, on several occasions, found that he was having a hypo (extremely low blood glucose) whilst asleep. Having access to a Continuous Glucose Monitor (CGM) at an affordable price, would allow the whole family to sleep and would mean I could walk into his room in the morning without the fear of finding my son dead. This is the reality of our existence. My son deserves better. All people with Type 1 diabetes, both young and old, deserve access to this technology at an affordable price. 

I watched the brave and amazing Donna Meads-Barlow speak on television about the horror of finding her daughter dead in her bed in the morning. Noone should have to go through this when there is a means to prevent it!

My husband and I do not earn a huge wage. We have two other children. We cannot afford the monthly cost of $480 and the set-up cost of around $1200.  We were funded for a week’s trial on a CGM last year and this trial (through our diabetes educator) allowed us to see patterns and make adjustments which enabled our child to have much better control. This, unfortunately, was short lived, as you need to wear a CGM more regularly to see the benefits.

In the next few years, he will complete his exams and will perhaps go off to university and then on to work. How can a young man in his early twenties possibly afford the cost of a CGM, the very device which would allow him to stay healthy, active and in the work force?

As a tax payer, I feel I have a right to ask for access to this potentially life saving device for my son,  and for all those, both young and old, who live with Type 1 diabetes.

He deserves the right to sleep through the night without worrying that he may go low and not wake up.

He deserves affordable access to a device which would allow him manage this disease with more confidence.

He will be a fully functioning, tax paying member of the work force and does not want to be a burden on the hospital system.

As a mum, and a tax payer, I ask that you please look into the funding of CGMs and advocate on behalf of all people with Type 1 diabetes .

Yours sincerely,

mum of type 1