"Peadiatric diabetes care, access to new technology"

My daughter was diagnosed type 1 diabetic at as a toddler. We used finger pricks and injections (several of each every day) until pre school  and eligible for a libre sensor. The number of finger pricks dropped from 7-10/day to 2-3. Massive improvement for her tiny fingers. Starting infant school, she got an insulin pump and went from 6-7 injections/day to 1 cannula change every 3 days! 

Now, 4 years later, she is being denied the right to have the latest technology which according to the government should be provided by the NHS. A Continuous Glucose Monitor (CGM) hybrid closed loop system. A far more accurate sensor that automatically updates every minute with a Blood Glucose (BG) reading and transmits it directly to an insulin pump via Bluetooth. This technology is acting as close to a real pancreas as possible. When the BG sends to the pump it then responds intuitively delivering extra insulin when the BG is high, doing away with very high spikes in glucose levels, and automatically reduces the amount of insulin when the BG is low, preventing most hypoglycaemic episodes (hypos). Hypos are when the level of sugars in your blood drop dangerously low and you immediately need to take something very sugary. (carton of  juice, jelly babies, sweets etc.) A hypo is like the worst hang over combined with a thumping headache, nausea, an unquenchable thirst  and extreme exhaustion on the brink of passing out, like life is draining from your body. 

My daughter loves taking part in things, especially PE at school, swimming and Taekwondo 4 nights a week. Without CGM, she hypos almost every class. Resulting in her sitting out and missing out as well as feeling horrendous with the hypo. We put lots of preventions in place hoping to avoid these hypos; 

-reducing background insulin to 50% (sometimes even further to 25%) 1 hour before class,

-30% reduction on her mealtime insulin before class

- In swimming and taekwondo she even removes the pump just before and during each class. 

She still hypos. 

She is severely affected by these hypos, has to sit out and miss out things she loves and her diabetes causes her to look and feel different from her peers. This is completely unacceptable when there is technology available and supposed to be provided by the NHS as approved by the government. Principally, on the grounds that she has 'hypo awareness'. I agree that she can sense a hypo during the day, but only once it's dangerously low - about 2. something. A hypo is classed as <4. Catching a hypo at 3.9 is far easier and manageable with less effect than waiting on it getting to 2. something when my little girl is ready to fall to the floor.

During the night, my daughter has no hypo awareness and never wakes up with a hypo. We have to rely on a device that's not 100% accurate alarming to tell us she is running low or high so we can check her several times every night. We have to wake her up to treat hypos or have to put corrections on her pump if her BG is high at night.

My husband and I don't get 4 hours of undisturbed sleep any as we're constantly taking turns to check her and treat her where necessary. This is unacceptable. We are barely surviving being so sleep deprived for almost 8 years! We are a danger to ourselves and the colleges and clients we work with due to permanent lack of sleep. Diabetes doesn't take a day off, or a weekend break or a weeks holiday. It is 24/7, for life.

In this day and age living in Scotland/Britain, we should not have to beg for help and plead our case to clinic every 3 months at check ups to a team who fully support us and wish they could give us access to this technology. 

We feel the Health Board directors and chief executives need to/must approve this tech for all the type 1 diabetic children in Scotland. How is it fair that all children in England have this tech, and some Health Board areas in Scotland have this tech, even the adult diabetics in Forth Valley have this tech! Why don't our kids? Surely this matter takes precedence when it comes to funding? The amount of money the NHS would save on the fallout of diabetes care if this was rolled out would massively out weigh the cost of giving this tech to the children that so desperately need it!

The long term effect on a diabetic who has endured many years of fluctuating numbers, constant spikes of really high hypers and  dangerously low hypos is an endless list like sight loss, limb amputations and even death! We fear my daughter could become another statistic of being added to one of those horrific lists. I shouldn't need to fight for what my daughter is actually entitled to!

After being diabetic for over 4 years, new guidelines came into place that children diagnosed type 1 diabetic aged 5 or younger automatically get an insulin pump and CGM. My daughter was a toddler at diagnosis and at infant school when this was brought out. So again, she missed out.  Because I fail to understand your reasoning & far less try to explain it to my little type 1 warrior why she is unable to have this tech. 

Eagerly awaiting your response and permission for my daughter's Continuous Glucose Monitor.