Advice on hospital appointment - what info can I bring re request for HCL?

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Esmee

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Type 1
Hi everyone.
I've seen the news and know that I'm not entitled to HCL under the NICE. But also know that some people do have it already (who are like me, not pregnant, HbA1C hovers in the low 7s, have a CGM and pump NHS funded).
What would help me in my appointment next month? What information should I bring? What questions can I ask? I explored DIY a couple of years ago, but got stuck before I got started. Then was told at hospital appointment that HCL is so close.
Can anyone help me?
Best wishes, Esmee
 
I was offered HCL without asking for it because, unknown to me, my clinic had begun to do it. I turned it down. If you want the facility to loop, I’d make a list of why - why it would help, how it would help. Keep the list precise and give examples if possible.

I’d imagine it might be quicker/more possible if you already have ‘the right equipment’. I use the Dana i pump and have done for a few years. By chance, this is one of the pumps my clinic is looping with, so when I was offered an HCL I already had the ‘right’ pump and knew how to work it manually.
 
Inka said:
I was offered HCL without asking for it because, unknown to me, my clinic had begun to do it. I turned it down. If you want the facility to loop, I’d make a list of why - why it would help, how it would help. Keep the list precise and give examples if possible.

I’d imagine it might be quicker/more possible if you already have ‘the right equipment’. I use the Dana i pump and have done for a few years. By chance, this is one of the pumps my clinic is looping with, so when I was offered an HCL I already had the ‘right’ pump and knew how to work it manually.
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thank you that's really helpful 🙂
 
Esmee said:
Hi everyone.
I've seen the news and know that I'm not entitled to HCL under the NICE. But also know that some people do have it already (who are like me, not pregnant, HbA1C hovers in the low 7s, have a CGM and pump NHS funded).
What would help me in my appointment next month? What information should I bring? What questions can I ask? I explored DIY a couple of years ago, but got stuck before I got started. Then was told at hospital appointment that HCL is so close.
Can anyone help me?
Best wishes, Esmee
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I would wait until the official Guidance Note has been published then clamber all over it looking for any evenue that could make you eligible or at least a chink in the parameters that could be explored / exploited. As I understand matters we've seen the good news public announcement and the official recommendations are now out for public (?) consultation. But the actual NICE Guidance Note won't be published until early 2024 - so nobody can still do much more than speculate. Once the Guidance Note is official there will still be some procrastination by each regional Integrated Care Board (ICB) as they resolve how they are going to find the funding that allows any one ICB to implement this.

Meanwhile I would continue to register that this is your determined end goal, request / insist that the Consultant or whoever will record your appointment next month to formally record your request and be patient for now.

I, personally, would not at present use the argument that "others already have this, so why can't I have it?". I'd keep that to myself for now - until I'd seen the final Guidance Note. Not least because the change from smaller CCGs to bigger ICBs has meant all precedents don't necessarily apply today. Your ICB may already be wrestling with inherited inequalities within the ICB from the various CCGs that the ICB now includes. Prodding this now may just trigger a hardened official stance. I'd liken this to a bit of wisdom I gained some 20 years ago of "Beware of Waking the Sleeping Lion". To be fair I was at that time much closer to the sleeping beast than you and I are today in relation to our ICBs; mine seems anonymous, has no defined abode and can only be contacted through my Consultant's Department or the Patient Advisory Liaison Service (PALS) - who are staffed and funded by the ICB with what feels like a default position of stall and then say no!

Whatever you do, do please let us know. I suspect there are lots of us who'd like to get much more tech assistance.
 
Esmee said:
I have the Omnipod Dash, and Dexecom 7.
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The Dexcom G7 is fantastic 😎 I have it. I don’t think any pumps loop with the G7 yet so, if you were given an HCL, you might need to use the G6.
 
Esmee said:
I have the Omnipod Dash, and Dexecom 7.
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ok, so neither are currently loop-able. Part of the answer/question probably will be when you are due a pump change, and if at that stage you could ask to go to omni5 loop with D6 (or D7 if it is loopable by then), or another loopable combination.

In the meantime, it is worth considering if your basics are right (accurate carb counting, pre-bolusing time, accurate basal). All of these are still needed with a loop [sidebar: I get really irritated with the 'artificial pancreas' stuff - HCL is not this, its like having really good suspension on a car - it helps even out the bumps and dips, but will do nothing if the car is driven into a wall. BTW not suggesting you are doing this, just that with the excitement over increased availability of HCL, just like with CGM, it's helpful to manage expectations.] but if you can prove you are doing all correctly and still have high HBa1c, then this may be helpful for the team to know, as well as other questions to consider - such hypo awareness/unawareness.

I see no harm in making an inquiry at your appointment as to when HCL might be available, just bear in mind that you may well be down this list, as you've said pregnancy/children are first in line.
 
Inka said:
The Dexcom G7 is fantastic 😎 I have it. I don’t think any pumps loop with the G7 yet so, if you were given an HCL, you might need to use the G6.
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Yes I reckon I would. My Doc suggested I get the G6 last year (without me asking for it) but I got caught up in the health authority that actually funds me (I live on the borders of two) not agreeing it. But a year later they agreed to fund the G7. Which I do love. I had the Dana 8 years ago - was on a clinical trial for what is now the Cambridge app - and they used that pump. Does it still have backwards threading for taking the bits out for changover?
 
Saoirse said:
ok, so neither are currently loop-able. Part of the answer/question probably will be when you are due a pump change, and if at that stage you could ask to go to omni5 loop with D6 (or D7 if it is loopable by then), or another loopable combination.

In the meantime, it is worth considering if your basics are right (accurate carb counting, pre-bolusing time, accurate basal). All of these are still needed with a loop [sidebar: I get really irritated with the 'artificial pancreas' stuff - HCL is not this, its like having really good suspension on a car - it helps even out the bumps and dips, but will do nothing if the car is driven into a wall. BTW not suggesting you are doing this, just that with the excitement over increased availability of HCL, just like with CGM, it's helpful to manage expectations.] but if you can prove you are doing all correctly and still have high HBa1c, then this may be helpful for the team to know, as well as other questions to consider - such hypo awareness/unawareness.

I see no harm in making an inquiry at your appointment as to when HCL might be available, just bear in mind that you may well be down this list, as you've said pregnancy/children are first in line.
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Thanks that is helpful. Partly why I am on this forum (and looking for local people to meet up with in Norfolk and Suffolk). Getting the basics right is the everyday stuff that I need buddies to help keep on keeping on 🙂. I find the Dexecom clarity and app much better for looking at data, but I still can't spot hormonal changes as a regular pattern and know they are only going to get worse in the next few years (I'm 45).
 
Yes, the Dana pump is made by Sooil, a S Korean company, and the first to produce a commercially available insulin pump, I believe. I understand that this is the reason for the bits screwing in ‘backwards’ but I got used to that really quickly. On things like the end of the cannula, you can just look at the plastic thread bit - no thinking involved :D The Dana i has had some upgrades and changes, eg the thing that holds the cartridge in now clicks shut. I haven’t even noticed if that’s forwards or backwards. There is also a clear ‘Open’ arrow for the battery compartment, so, again, no thinking.

Basically, it’s only when attaching the cannula to the insulin reservoir/cartridge that you’d be aware of the ‘backwards’ direction. It’s a fab pump 😎
 
I can't say how much it will help but if it was me, I would
- show I had done the research and know what I was talking about.
- give examples in my life where I think HCL would help
- give examples where the lack of HCL has made life harder. This could be extra bolus you need to give, how many different basal patterns you have, how often you have to adjust your basal patterns, etc.

Basically sell your need for HCL rather than "I want the new shiny thing"
 
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Inka said:
Yes, the Dana pump is made by Sooil, a S Korean company, and the first to produce a commercially available insulin pump, I believe. I understand that this is the reason for the bits screwing in ‘backwards’ but I got used to that really quickly. On things like the end of the cannula, you can just look at the plastic thread bit - no thinking involved :D The Dana i has had some upgrades and changes, eg the thing that holds the cartridge in now clicks shut. I haven’t even noticed if that’s forwards or backwards. There is also a clear ‘Open’ arrow for the battery compartment, so, again, no thinking.

Basically, it’s only when attaching the cannula to the insulin reservoir/cartridge that you’d be aware of the ‘backwards’ direction. It’s a fab pump 😎
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I imagine it has like you say had some improvements. This is going back 8 years now. I remember it being a bit fiddly to start, but much much smaller than the Medtronic I had been on.
 
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