The Malta Independent 7 December 2019, Saturday

One day in November is not enough to raise awareness about diabetes

Giulia Magri Thursday, 14 November 2019, 09:24 Last update: about 22 days ago

Patricia Cauchi-Farrugia speaks to Giulia Magri about the difficulties she, and other parents, whose children are diagnosed with Type 1 diabetes, face.

International Diabetes Day, 14 November, is the day which focuses on a global awareness campaign on diabetes, yet Patricia Cauchi-Farrugia believes that diabetes needs to be given much more importance and awareness.

Patricia delves into her own personal relationship with diabetes: married to Rodney, who has lived with Type 1 diabetes for 27 years, and raising their son, Nick who was diagnosed with Type 1 diabetes at the age of three.

Nick had just started Kinder One, and when the teacher pointed out the tell-tale signs, it was clear that Nick had diabetes too. The change in our routine was a shock and very emotionally challenging.”

She explained that the transition was not easy but they had to keep a positive attitude. She highlighted that by reading, learning and understanding the condition, she is able to raise their son well, despite the condition, and to make sure that he does not feel any less than other children.

It is extremely important to learn about diabetes. The whole family should because a good support system is vital to the person living with diabetes and unfortunately some families remain oblivious about how to manage it correctly.”

Patricia notes that having the right attitude, and instilling the same attitude in their own child, is just as important as diabetes management itself. 

 

Schools must be better educated and responsible for children with diabetes

As parents, Patricia and her husband, have to be prepared for any situation that could arise, with respect to Nicks diabetes. They believe, however, that educators should also be prepared for their sons wellbeing.

Patricia pointed out that most schools have shown to be unprepared, and untrained, and do not take into consideration the emotional difficulties parents, and children, face.

Many times school administrators make us feel like the trouble-starters for being demanding when in reality we are the victims asking for help and understanding. Many times you find yourself in a very strange position, having to educate the educators”. 

This is a situation some educators do not appreciate, Patricia went on to say. She explained that it is extremely ironic that she often finds herself in this position, and is made to feel like she is being unreasonable for asking for adaptations to support her child.

I believe that for starters headmasters and assistant heads should all be certified first aiders. As they have the keys to the school and take care of the wellbeing of hundreds of children and staff, they should definitely be qualified first aiders. It should be at least a basic requirement.”

It is Patricia that many a time has to remind the educators that her childs wellbeing is in their hands whilst he is at school and that it is extremely important Nicks diabetes is not to be taken lightly.

Even children with no conditions can have issues, and our educators must be prepared for anything.”

There were times when a nurse came to school to take Nicks blood glucose reading, which gave distorted and false readings, Patricia explained. Following this, she ensured that Nick learnt how to test his own blood glucose, with the traditional blood test (HGT), getting rid of the dependency on the nurse.

This was a huge milestone for Nick to learn how to be independent. I would then get a call from the school informing me of Nicks blood glucose readings. This helped us stay on top of the situation, and aid the school in Nicks wellbeing. We never had any issues and Nick was happy and safe. Diabetes management was never an obstacle.”

There seemed to be a challenge when Nick was about to start secondary school, however.

We had to start everything from scratch when Nick was on his way to secondary school. We were scared other schools wouldnt accommodate us as well as his first school.

We learned that it was very much up to the person in charge. When we held meetings with the secondary school administration, two years prior to admission, we informed them of our method of managing diabetes which had worked wonders in the previous school. The feedback we received was defensive and sceptical.

Instead of seeing this as a way to reduce the responsibility of the school, the school administration, at the time, was concerned that Nick was going misuse his phone at school.”

Patricia was shocked at the reaction of the school and highlighted that this was merely a tool to support his teachers in moments of uncertainty, or concern, and having a diabetic child with a phone is not a cliché but part of diabetes management.

This is not the right way to go about receiving support. It is crucial that all children with conditions, and their families, are treated with respect. Inclusion policies are also applied to children with health and educational challenges. These children require adaptations to accommodate their needs, and the education system should be prepared and give allowances without posing further challenges to the family”. 

It took three meetings, and a change in school administration, to obtain the help required, but gladly the end justifies the means, and Patricia now sends her son to school knowing he is taken care of thanks to mutual cooperation. 

But do all parents manage to get the help they need, without putting stress on the child?

She highlighted that there is simply not enough awareness on diabetes and the condition is not taken seriously enough, on a national level. 

 We should not wait for 14 November to highlight the importance of diabetes, as many of us are fighting and coping with diabetes in silence.”

Patricia said that parents, and their children, with Type 1 diabetes should not be overlooked or ignored.

 

Government procrastinating on provision of the Continuous Glucose Monitoring (CGM) sensors

Patricia and many other parents have forked out hundreds of euros out of their own pocket to purchase the continuous glucose monitoring sensor, such as Freestyle and Dexcom, which are systems which provide people with the power to monitor their blood glucose level more efficiently.

Each month we spend 300 on my husbands and Nicks glucose monitoring, with no form of compensation,” Patricia explained. She also pointed out that such CGMs have made a big improvement in childrens lives, living with Type 1 diabetes.

If the government has money to spend, health care is the top priority. I dont see why parents must seek out someone from abroad to buy the CGMs for us.

For us to purchase Freestyle, one has to go through so much hassle. At least if we have to buy them, there should be a subsidy, or we are able to purchase them locally.”

She explained that the CGM companies only supply and ship to UK addresses, so added burden and payments ensue, as parents must find a UK address and then send the sensors to their own address.

This is not a story about diabetes, this is the life of a child who, like many others, is learning to grow with the added challenge of managing a life-threatening condition.

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