Sunday, 7 November 2010

Our Appeal For A Constant Glucose Monitor

Mummy thinks that less Hypo's might make my horns go!
Silly Mummy!
Well the day finally arrived Thursday the 4th November 2010. We had been asking for a CGM since February 2010. 8 months later we finally got our appeal heard.
3 people on behalf of the PCT. 3 people made up the Appeal Panel. Donald my lovely husband and I.

The PCT gave their explanation first of why they had declined the CGM for Claudia. They were then asked questions by the Appeal Panel and we asked a few questions.

They kept on referring to Claudia as "the child" I respectfully requested they used her name as it was Claudia we were talking about.

Then it was our turn to put our case forward, so we just basically explained what Claudia's life and our life was like on a day to day basis, in my humble opinion that should be enough to get a CGM or anything that will improve her quality of life.

The Appeals Panel then asked Donald and I some questions.

What is sad is Claudia does meet NICE criteria for a CGM however our PCT has not yet put a care pathway for CGM's into practice.

NICE is only for guidance on CGM's.

For me it really struck home that no one in that room understood what it was like to have Type 1 Diabetes or care for someone with Type 1 Diabetes.

Someone said Claudia looked healthy, that's why I feel that Type 1 is always in the background, children and adults with Type 1 always appear healthy!(yet that is so often not the case as Hypo's and Hyper's make them feel dreadful and it can take hours if not days to feel better).

My message to anyone out there if you are unhappy with the outcome for any request that you have made, do challenge it!! The people sat in that room were just ordinary people like you and I.

The more we challenge, perhaps the easier it will become in the future to get the best treatment to support what is a very complex condition.

Yes I did come out shaking and oh boy did I hit the chocolate, but I would do it again.

We will hear within 14 days. Fingers crossed.


  1. wow good for you! I will say a prayer that you get the answer claudia deserves. Justice is on mediciad and they dont cover cgms at all. So frustrating. Gl!

  2. Fingers and toes crossed for you all.