Libre NHS prescribing

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David1001

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Hi I am a carer for my wife who has treatment-induced diabetes following immunotherapy. All communications from her consultants to date have referred to her diabetes as Type 1. However on applying for NHS funded Libre Flash glucose monitoring she has been turned down on the grounds that she has 'secondary' diabetes, not type 1. Has anyone any advice or evidence we can use to support her case for review?
 
I agree it's different to normal T1 - but as it is caused by exactly the same thing ie the person's immune system murdering their Beta cells and only apparently happens to 1% of the people needing immunotherapy for (or rather, against) their cancer - how many millions of ££££ is it going to cost the NHS a year, for you know what's sake?! o_O 😱 (we need an interrobang on here @Admin )

Does the team think Partha Kar needs to be involved - or if not, who @David1001 ought to approach ?
 
trophywench said:
Does the team think Partha Kar needs to be involved - or if not, who @David1001 ought to approach ?
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I was thinking either Partha Kar or the Diabetes UK people (if CCGs are using this to deny things to people with secondary diabetes then DUK might want to know).
 
My area the CCG has been replaced by an Intergrated Care Board.
 
I see that you are correct - just that I didn't know as it's the first I've heard of this.

I'm not at all in favour of GP surgeries being able to decide not to let patient records go onto the ICR - what a very shortsighted thing for them to be able to do. As it is, my surgery limits what we're able to see and the hospital don't allow us to see what info on tests they've instigated and therefore hold the results for, whether it's my latest HbA1c or the results of my head CT and MRI scans the other year, or the scans of Pete's AAA. Some people have said they can access letters which their hospital send to their GP. We can't. They can consult their GP surgery by email and eg send them photos of a lump etc for diagnosis. Ours has only one email address, it's, 'admin @ surgery name'.
 
I have Type 3c (secondary) diabetes following pancreatitis. The consultant just crossed out Type 1 on the top of the form (needed at the time to access Libre, but probably not needed any more following the change in guidelines) and wrote 3c.
As we're treated in the same way as Type 1s we should have access to Libre. There are a number of us on here with 3c who have Libre.

I'd second contacting Diabetes UK helpline. Good luck.
 
soupdragon said:
The consultant just crossed out Type 1 on the top of the form (needed at the time to access Libre, but probably not needed any more following the change in guidelines) and wrote 3c.
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Yes, I wondered why the consultant (or whoever it was who turned down the request) didn't just approve it. The decision to treat people with secondary diabetes differently seems obviously silly.

Come to think of it, maybe it's the GP (or GP surgery) not wanting to prescribe (and so pay for) Libre, so perhaps contacting the consultant about this would be the fastest way to fix things?
 
Thank you all for your helpful suggestions. The person who turned down the request was the specialist diabetic nurse (my wife’s consultant is her oncologist: the treatment that induced the diabetes was for cancer). Please forgive what may be a silly question (I am a newbie, as will probably be obvious): who is Parthia Kar? Will follow up suggestion re Diabetes Uk helpline.
 
David1001 said:
Please forgive what may be a silly question (I am a newbie, as will probably be obvious): who is Parthia Kar?
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No question is silly, it’s just something you don’t know the answer to.
Partha Kar is the National advisor to the NHS on Diabetes.

NHS England » Professor Partha Kar

Type 1 diabetes is going through something of a global revolution – especially with the advancement of technology in aiding self-management. In recent years, the NHS has made big strides in giving access to new technology to the vast majority of people living with type 1 diabetes. Alongside...
www.england.nhs.uk www.england.nhs.uk
 
This is a note to thank you all very much for your most helpful replies, which have resulted in a positive outcome . I contacted Partha Kar, as suggested, and he told me that the NiCE Guidelines do indicate that Libre was to be prescribed for secondary diabetes. He pointed me to "Type 1 diabetes in adults: diagnosis and management” (NG17: updated 29 June 2022). This amongst other matters explains the decisions of the committee that drew up the Glucose Monitoring guidelines. It includes a section on ‘Continuous Glucose Monitoring’ which says

"Some people have insulin insufficiency because of other conditions. The committee noted that these people would get the same care as people with type 1 diabetes, so they should have access to CGM in the same way.”
(p. 51. See https://www.nice.org.uk/guidance/ng17/resources/type-1-diabetes-in-adults-diagnosis-and-management-pdf-1837276469701)
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At any rate, I pointed this out to my wife's diabetic team, and referred to Prof Kar's advice. Whether it was his name or the information above I could not say, but the previously closed door swung open, and a Libre device is being prescribed.
 
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