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Pump cancelled

annettekp

Well-Known Member
Messages
153
Location
Orkney
I'm gutted. Erland was due to get a pump this month but the NHS haven't approved the funding. It went through a meeting in September and they deferred making a decision till the October meeting and guess what they didn't make a decision.

They haven't said no - just don't know. And because they can't make up their minds we've missed our 'slot' in November.

Can't believe they've mucked us around so much. What was the point in organising dates if they don't know.

Annette
 
Contact your local PALS and ask what happened
Hana
 
i am new to this forum and new to diabetes so i cant really offer you any advice but i really do hope you get it sorted soon.x
 
Oh that's horrible news. I hope you're able to get things moving again soon. Nothing worse than waiting, it's the game we're playing right now and so frustrating.
 
I would write a very nice letter to the board stating reasons for the necessity of the pump (and the urgency).

I would ask them for a letter of explanation as to why a decision has not been made on 2 separate occasions.

I would out of courtesy copy my consultant in, or inform him first of what I was going to do.

I would even try to find out when the board is next meeting, and even ask to attend the meeting for a slot to state your case.

Sometimes a written approach to professionals or a personal one can scare them a little, as this would be totally outside of what they are used to.

Think of it from their side.....who would be the spokesperson to tell you no, who will have the guts to write you a letter of explanation as to why they can't make a descision. Who will they get to tell you that you can't attend etc......They would really have to get their thinking caps on as to whether they have been reasonable.......and to how they really stand in a case of law.....

Tell them you reserve the right to publish contents of any correspondence and to record all conversations....

I would really approach from a slightly different angle to get their attention if I was you....a nice but firm way with a reasonable, understanding approach and attitude does sometimes throw professional people to knowing that you really want a decision of yes.....
 
OH NO that's terrible and just not acceptable. We are in the Lothians and had to fight and fight to get a pump. Please don't give up and don't go quiet. We wouldn't leave them alone. We called, emailed, wrote. Went to the papers, got MSP's on side and also sought help & advice from IPAG (Scottish equivalent to INPUT). I think they gave us a pump just to get rid of us - whatever, it worked and now my 5 yr old is happily settled on her pump and her control and HBA1c is the best it's ever been.
Don't give up!
Good luck
XXX
 
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