My experience with aquiring HCL via the NHS

So if you check through my previous posts you'll see my experience on the amount of bureaucracy it took for me to finally get approved under the NICE guidelines for HCL. If you've read the NICE guidelines it seems like it would be simple. Meet the criteria, get a referral, get a HCL pump. This couldn't be far from the truth in my experience and I'm curious to know what it was like for other people in the UK.

During my early stages of diagnosis in 2023 I always suffered from hypos day in, day out. It was a non stop occurrence that it actually felt normal, like this was gonna be my life from now on. Despite me bringing this up to my specialist I was never really given any other option apart from changing my ratio and my basal. Sounds simple on paper but then I just ran high all the time and got my A1c from 5.7 to 7.3. Doesn't exactly seem like a great long term solution, my previous specialist recommended pump therapy after a bunch of changes to basal and bolus rates but this was a long rabbit hole that I never expected.

At first it was just doing DAFNE, a week long course of attending the hospital covering what I think is a complete waste of time since it touches the very basics of type 1. I got to see what other people's CGM graphs looked like in this group of people and my god. These people were running constantly in the 16-20 mmol range constantly, honestly I don't know how they were alive and not in constant DKA. Makes sense they were doing DAFNE but my graphs were just up and down (mostly down) I seemed to be the only person suffering hypos in that group.

Next was speaking to a specialist about being referred for HLC now that DAFNE was done but I ran into another issue. Funding windows. Apparently clinics are given a certain budget to allocate people to HCL. This kind of goes against the NICE guidelines in my opinion since if you're struggling bad funding should just be manually approved for that clinic out of the NHS budget, but no, you have to wait for the funding window to reset apparently.

That process took around a year and a bit, next it was basically another DAFNE course but this was testing your knowledge on what to do in certain situations. My understanding is they ask you this so they can see if you can manage a pump and not kill yourself in the process, for me very straightforward. Once all of that is done and complete you then get asked what system you would like. For me I choose Tandem, doesn't seem to be a very popular option, most people I was with chose omnipod or ypsomed.

So with all of that out of the way I was finally shipped my pump, but this came with some hidden details that in was never told by any of my specialists or nurses and to be honest they really should have told me this.

1. My bolus insulin is lyumjev, they switched me back to novorapid, now why this? Lyumjev is only rated for 2 days with infusion sets so by default they switch you to a 3 day rated insulin like novorapid. I was never told this. You can only go back to lyumjev if you experience constant highs that take a long time to go back into range. It's also about funding, since you'll need more infusion sets since you'll be switching them every 2 days, not 3.

2. My CGM, I use a G7 that was a clinical decision because libre has terrible delayed lows for me, plus many false lows that I can't fix because the libre system doesn't allow calibrations. I was told that once the tslimx2 supports libre my funding for dexcom G7 will end. Now why would you end a perfectly good CGM system that I have no issues with and works fine? Agh of course, funding. The libre system is cheaper for the NHS and they last 14 days instead of 10.

I hope this rant helps anyone who's trying to acquire HCL in the UK and the amount of pain it takes to jump through all the hoops. Maybe it's just my clinic. 😅