Hi
@Proud to be erratic
your memory is phenomenal!!
The gp did change it, the hardest place to have that recognised is actually at the hospital.
My memory is not phenomenal, absolutely the reverse and my cognitive decline genuinely bothers me! But I knew I'd posted something to you at some time, couldn't remember what or when and looked back at your first post then reread that thread. It's not cheating, but essential for me and just leaves a false perception that I remembered!! I sometimes post, with an opening remark like "on reading back ..."
I discussed CGM with diabetic consultant at the hospital clinic, who said that although I was a suitable candidate, due to not being T1 or on at least injections of insulin a day, I wouldn't be able get funding.
I relayed this to my gp, who said if the consultant told them which one to prescribe, they would happily fund it.
There are currently 4 CGMs in a lower cost bracket that GPs can prescribe; 2 rarely appear on this forum, Dexcom One is now appearing but I'm pretty sure will disappear this year to be replaced by something different and yet called Dexcom One +. So park those 3 for now, but keep a mental note that Dexcom One + might be great as an alternative in a couple of years - if it delivers what is hinted at. So that leaves the widely used Abbott Freestyle Libre 2, that your GP can prescribe. I would recommend that to you anyway as it is not only well known by many here but has a flexibility that others don't quite have and a really convenient phone app that allows you to record insulin, food, activity and any notes (importantly) easily. The ease is important because I envisage you using it to experiment and experimentation needs record taking. [You might find you need to use a diary anyway, for completeness; but your diary won't be visible on line to any Health Care Practicioner (HCP) you might want to review your outcomes with.]
The gp contacted the consultant and asked, to which the consultant denied he'd ever said it, I've always wanted one as, like you correctly stated, having shared custody of a 13 Yr old with autism, id like the early warning so that I didn't have to leave it until I feel so unwell to know there's a problem.
I'm due to see the consultant on the 19th of this month, I'm going to have it out with him and record the conversation.
What disappoints and frustrates me is so many HCPs live and work in their own self-created silos, somehow ignoring that everyone's body is complex, no one size fits all and someone like yourself with existing multiple conditions needs a holistic overview. I was able to "sack" my 1st Diabetes Specialist Nurse (DSN) and 2 Diabetes Consultants each of which was simply wasting my time and not helping ME. I was lucky to emerge from that successfully, but I feel I made my care sufficiently important that I was willing to force better care, however I got there. At that stage I was still learning about NHS silos and how to break out of them.
Can the NICE guidance revision be easily found on Google?
Yes Google NG17.
Go back to your GP and tell him/her that YOU are better than any Consultant. YOU know yourself more than anyone else. That YOU have done some research and trialling Libre 2 can NOT hurt you and might well allow you to find a route through your co-morbidities to keep your steroid induced D sufficiently well-managed along with continued necessary taking of steroids. Libre 2 is not "one more chemical" but a technical aid that could make your life easier. Yes, it's more expensive than some prescribed meds, but way, way cheaper than another spell in Hospital. Tech, relatively low cost tech, that helps you live a reasonable life and enjoy your children growing up has got to be a no-brainer. An Ace (or wild card) to play might be where will the current unsatisfactory medical regime leave you in you your senior years if nothing is done. CGM could be a great solution to break the current stalemate.
Give this a hard sell. In the back of your mind be prepared to compromise: have Libre 2 for 3 months and prove this is a decent way forward to at least try; then get that extended perhaps on a one a month basis so that when you do have Libre for 14 days each month you can explore other lifestyle permutations for improving your D management. If that works after 6 months go back and ask why you and the GP are pussy-footing around. You do have steroid induced D, so prescribing the lower cost Libre is in the gift of your GP and he/she can retrospectively justify their medical decision if their prescribing is challenged by the accountants in the Ivory Tower of your Integrated Care Board (ICB). Help your GP with vocabulary that can be included in a business case between the GP and ICB; running a Practice must have more than a few stresses and strains between the Practice and an ICB (with its sledgehammer). There has got to be a different way of managing your co-morbidities; coax your GP to be creative and look for a holistic solution.
For your background awareness currently the higher cost CGMs can only be prescribed by Hospitals. Their supply arrangements are different. Their Trusts have contracts with firms like Abbott and Dexcom that results in DPD delivering a 3 month supply to your front door, automatically.
Thank you so much for your reply, it's actually made me feel less like I'm being a primadonna asking for something utterly ridiculous
You are NOT a primadonna. Just someone with co-morbidities that HCPs in their silos can't see, never mind try to account for in a holistic manner. There might not yet be a great medical solution for YOUR unique circumstances, but tech for monitoring can be cheap in comparison to frequent GP visits or less frequent Hospitalisations.
Got to dash, endless niff-naff and trivia to do battle with! Sorry, not proof read this, hope it adds some value.
