I remember the consultant saying Claudia could have the following therapies:
2 x daily injections mixed fast acting & long lasting insulin
4 x daily injections 3 fast acting & 1 long lasting
Insulin pump therapy
My mind was overloaded at this point but what stuck in my mind was if we wanted a pump at this stage we would have to fund it ourselves, the current school of thought was 4 x daily injection gave better control.
I was only working part-time so funding a pump was not an option and to be honest I had never heard of an insulin pump.
This was the worst choice we have ever had to make, in reality it wasn't a choice, our daughter needed insulin to keep her alive. We decided on 4x daily injections.
The impact of this was harsh, I had to give up work to go into school everyday to give Claudia her injection, this carried on for 10 months. I went in when I was heavily pregnant and again with a new born baby, plus Flissy, it made for celebrity mum status at school without the financial benefits and lets be honest heavily pregnant and breastfeeding are not a good look!
What was very sad was none of the children could snack anymore, which is what children do. It was a strict 3 meals a day plus supper, starting with an injection before the start of each meal.
Treats were limited and at meal times only, Claudia could no longer stay at her friends for the day or over night. To be honest this was no life for a child, there must be a way of achieving a better quality of life for her.
We began to read more and more about the pump and realised this was the way forward, for quality of life, flexibility, ending upset at injection times, better control, eating anytime, and most important of all Claudia would get her independence back.
It really struck home, when I delivered Purdey, Donald had to leave within an hour as Claudia needed her next injection and there was no one else willing to do it.
Our battle began
We began to lobby the hospital at each visit, we were constantly told, we would not get one due to the following: her hba1c's were always below 7.5 %, she was under 12, we would not benefit from having one, it was no different from the 4 x daily injections, if it was my daughter I wouldn't want her to have one. They were wrong!
After several of these conversations I decided enough was enough and told them I wasn't asking them I was requesting that they apply to the PCT as that was our wish, Stating the following reasons:
To give Claudia her independence back, to end the tears before each meal, to give her the luxury of eating when she wanted, to support the well being of the whole family in what is such a complex condition, her emotional well being, it would help support her education and the staff who care for her at school, better control as she danced, to help balance the highs and lows etc.
At the end of the meeting our Consultant said ok I will apply , but you will not get one.
I left the meeting dripping wet, and later when Claudia was back at school, hit the chocolate big time. It was the only appointment that Donald couldn't make.
Guess what? the PCT said yes, we cried with relief!
Every time we go to the hospital we always make a point of saying how our lives have improved. No more tears, before meals, Claudia can stay at her friends, she can eat what she wants, when she wants, when she has been unwell, we have maintained great control. School take her swimming and disconnect the pump and reconnect it afterwards. Quality of life is good!
Few ohhh moments, learning how to put a cannula in, operating the pump, carb counting but you get better in time and for our family it works. Claudia loves her pump.
My advice is if you want one go for it !! Some will have to battle more than others but it's worth it. Don't be put off, by their pathetic excuses, go armed with the NICE guidance plus your own quality of life issues.
One of our most memorable moments was this Christmas, we went out with family on Boxing Day, all the girls looked beautiful, Claudia was dressed in a pink dress, matching tights and hat. She had just finished eating when she jumped up, lifted her dress up in front of the whole restaurant and" shouted how many carbs mum"? It was the first time we had seen her so carefree, that picture will be in my mind forever. I just hope she doesn't do that when she's 16.