Why howdy Cowboys (oops PCT)! To date a decision has not been made!
I have heard lots of good idea's and plans from the government and all the charities. This gives me hope and keeps me going every day thinking, the future should be brighter.
There are some truly inspiring, amazing people fighting to deliver an enhanced service.
However I have come to realise that unless there is accountability at local level, nothing will ever change. Currently nobody can make the PCT commission pumps, sensor's etc even if there is NICE guidance and people meet the criteria. Will this change with GP commissioning, who knows?
How is it the NHS are the only body who can move the goal posts without any consequences? They do not respond to your emails, phone calls or as in our case when you attend their offices you are still not given the information you are required.
When they said no, we submitted additional supporting evidence to say why we thought Claudia would benefit from a CGM. At this point we asked for them to send us their evidence as to why in their opinion a CGM would not improve Claudia life.(as they had stated in their letter)Nothing to date!
At this moment in time no one will even tell us when Claudia's case is going to be heard again.
I have made a formal complaint. I have been told they have 25 days to respond. Indeed I should be grateful as they are allowed up to 12 months.
I have involved my local MP.
I have involved ICAS (Independent Complaints Advocacy Service)
None of the above have made a difference, the PCT think it is their right not be questioned.
Tonight I have emailed the Health Service Ombudsman.
6 months on I am worn out by battling with the PCT, in order to help improve Claudia's quality of life.
This is a message to the PCT I will not be defeated and bullied. I am going to fight back and expose you. Not for not commissioning equipment but for treating a family in a callus, cruel unprofessional way, with absolutely no consideration for an amazing little girl aged 9.
I do this on behalf of all the people who have not got the energy to fight, hoping it will make the PCT's think in the future.
A 9 year old little girl who has to endure the daily life of living with diabetes, shouldn't be made to wait for 6 months.
As Claudia said in her video "this is a message to the PCT, I think all children with diabetes should have a pump and sensor if they want one"
Such wise words from a little one!
Better Control = Better Quality Of Life= Less Impact On The NHS= Everyone Is A Winner
Sometimes I think I should give up, but then I look at Claudia and I know she deserves better.
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