Attended an HCL event in Cornwall last night

[PattiEvans]

The event was put on by Treliske Hospital Diabetes Clinic to inform patients about the new NICE guidelines for Hybrid Closed Looping and enable people to ask questions of the representatives of the 4 systems that will be on offer. It was held in Camborne (West Cornwall) at the Heartlands Centre. Another event is to be held on a different date in East Cornwall. Heartlands Centre is well known but if you have never been there it's quite hard to find in the dark. We drove round a fair while before finding a very dark car park seemingly in the middle of nowhere. A short walk later, following signs, we found the conference centre which was well lit and breathed a sigh of relief. It was attended by a lot of people - not entirely sure of the numbers, but I'd say somewhere between 70 and 100, some of whom were accompanied by carers/partners etc.

It kicked off with a presentation by the Chief Pump DSN, who told us about the NICE guidelines and how they would be applied. She outlined the general concept of closed looping and went into a bit of detail as to the nuts and bolts. She also told us that the Diabetic clinic was struggling as no extra funding had been allocated by the local CCG to fund staffing levels and training for those staff to be able to train and support patients with HCL. I am a little unclear as to how they propose to fund the actual systems themselves. We were asked to complain and given an email address to enable us to complain and encourage them to support this initiative. Apparently we await some decision to be made in January 2024. I apologise for not being able to give more detail on funding as I have had blocked ears for around 2 months and I missed some bits (fortunately the ear Clinic where I had an appointment today were finally able to rectify this and Wooo Hooo I can hear again and it's wonderful!).

One bit of information she gave us is that there are approximately 1,400 people with T1 in Cornwall. So a fair number in the queue. Most of the people attending seemed to be on pumps and some form of CGM. I got chatting to a lovely lady who was absolutely thrilled to be amongst so many T1s and said she had rarely met another one in real life. I mentioned this forum and the meet ups (of which I have been to 2). It transpired that she is a member here. Not sure of the user name though. Hopefully she'll come in and see this post as I'd like to keep in touch.

Next we had a short presentation from the DSN from the Newquay area who talked about how important peer support can be. Since DUK was mentioned several times I was completely floored that she never mentioned this forum. Later on when we were moving about freely I buttonholed her and told her about the forum and she seemed quite surprised. She is trying to get volunteers in various areas of Cornwall to get support groups together. There was a suggestion box and paper/pens available, so I gave her the forum URL and left her my contact details.

We then had presentations from each of the four pump representatives. Medtronic 480, Ypsomed, Tslim and Omnipod. Unfortunately there was some sort of tech problem and they were unable to show their slides. We did have plenty of time to go round and ask questions later, which I did and I picked up a lot of leaflets, which I haven't had time to read yet. Omnipod was the only non-tubed pump. I was surprised when I said to the Omnipod rep that I still had 2 years to go on the current contract, Omnipod Dash, and she told me there was no contract and that I could go onto the Omnipod 5 any time. One of the problems I currently have with the Dash is the minimum hourly rate increases/decreases of 0.05u, rather than 0.01u that I had with my previous pump. The rep explained why and how the problem doesn't exist with the HCL system. Brilliant!

What I initially took away from the Pump DSN's presentation was that I don't fall into the category of getting the HCL any time soon as my Hba1c (51) and day to day control is too good. They are looking at those with Hba1cs over 58. My new friend (if she reads this I hope she doesn't mind my terminology) is in the same position and had the brilliant idea that they should look at training 10 of us who are interested, understand how to manage our condition well and are invested in having good control initially in order to iron out any blips in their training methods. Would be nice if they did... otherwise I think I might be almost 83 before I get it! However when I spoke to the chief DSN briefly I said this and she said "it won't be that long" We shall see!

 

[Bruce Stephens]

However when I spoke to the chief DSN briefly I said this and she said "it won't be that long"

Partha Kar has said more than once that he thinks it'll happen (that HCL will be standard care, offered to everyone with T1) within 5 years.

 

[PattiEvans]

Partha Kar has said more than once that he thinks it'll happen (that HCL will be standard care, offered to everyone with T1) within 5 years.

In 5 years I will be almost 83!

 

[Bruce Stephens]

In 5 years I will be almost 83!

Perhaps you looked younger that day? I also suspect there'll be local variations, so (funding permitting) you might well be offered one a couple of years earlier. (I think they were saying they'd like a review after 3 years and I think that's when Prof Kar imagines the criteria will be widened.)

 

[PattiEvans]

I was writing a bit "tongue in cheek" @Bruce Stephens. I hope it will be sooner though on the whole my control is good, but only because I am very hands on with the whole thing. I think I may not quite look my age, though others might think differently and I certainly maintain a lively SOH and a young mind.

 

[Eternal422]

Thanks for the write up on this event @Pattidevans , I was amazed to get the Libre and now there’s an outside hope of getting HCL sometime in the near(ish) future by all sounds. I agree with your thoughts that letting those who are interested and keen to have HCL to help advance training and knowledge is a good idea, but I guess with limited funds and resources the NICE guidelines of tackling those with HbA1c over 58 is a reasonable starting point.

One thing I feel is that, yes there would not be a massive clinical benefit to me with my HbA1c of 49, however the mental relief and removal of some of the day to day burden would be very, very welcome. Let’s see how it progresses.

 

[Bruce Stephens]

but I guess with limited funds and resources the NICE guidelines of tackling those with HbA1c over 58 is a reasonable starting point.

Yes, I think it's not just funds. I suspect offering Libre (and then other CGMs) was basically limited by money, but HCL sounds like it'll involve much more training so the speed will be limited even if lots more funding were found. And inevitably they'll try and prioritise those who have most to gain.

 

[PattiEvans]

One thing I feel is that, yes there would not be a massive clinical benefit to me with my HbA1c of 49, however the mental relief and removal of some of the day to day burden would be very, very welcome. Let’s see how it progresses.

My thoughts exactly! It would be very welcome not to have to think about D constantly and take it into consideration with everything I do and every decision I make because it does get wearing.

I must also stop being resentful that those who are getting "rewarded" by having it are those who don't make the same efforts to control their BG. It's very uncharitable of me to think that way, but my thinking is coloured by 3 T1s I know locally, who really don't make an effort. One lady said to me that she's simply not interested in carb counting.

 

[nonethewiser]

As ever it all boils down to funding & allocation of staff.

 

[rebrascora]

I did wonder just the other day Patti why you were still on the old Omnipod when others on the forum had been automatically upgraded "mid contract", if you like.

Sounds like a really interesting evening. Many thanks for documenting it. Still not sure the idea of a pump or closed loop appeals to me, but would be interested to attend such an event locally. I wonder if the invites to it were only sent out to pump users or to all Type 1s in Cornwall.

 

[Tdm]

My thoughts exactly! It would be very welcome not to have to think about D constantly and take it into consideration with everything I do and every decision I make because it does get wearing.

I must also stop being resentful that those who are getting "rewarded" by having it are those who don't make the same efforts to control their BG. It's very uncharitable of me to think that way, but my thinking is coloured by 3 T1s I know locally, who really don't make an effort. One lady said to me that she's simply not interested in carb counting.

I know what you mean....can't help thinking if you don't have the basics eg carb counting, a pump isn't the sulution. Bit like giving a top end guitar to someone who knows 3 chords.
Also perverse incentive to some on the border to worsen their control to qualify.
Though, of course, high a1c isn't always due to lack of effort.

 

[PattiEvans]

I know what you mean....can't help thinking if you don't have the basics eg carb counting, a pump isn't the sulution. Bit like giving a top end guitar to someone who knows 3 chords.
Also perverse incentive to some on the border to worsen their control to qualify.
Though, of course, high a1c isn't always due to lack of effort.

You're right @Tdm, sometimes it's lack of education. Thinking back I got very little in the way of education from any HCP, I had to find out most of it myself and not everyone even knows they should understand things better. They may be trying but just not have the knowledge. Especially stuff like basal testing. No HCP has ever mentioned that to me. When I did finally get a 2 day carb counting course there were some people on the course who had had T1 for a long time but were woefully ignorant of what I think of as the basics. If they gave every T1 a copy of TLAP soon after diagnosis it may help!

 

[PattiEvans]

I did wonder just the other day Patti why you were still on the old Omnipod when others on the forum had been automatically upgraded "mid contract", if you like.

Sounds like a really interesting evening. Many thanks for documenting it. Still not sure the idea of a pump or closed loop appeals to me, but would be interested to attend such an event locally. I wonder if the invites to it were only sent out to pump users or to all Type 1s in Cornwall.

I'm going to try to sort it out, but at the moment I'm swamped with "christmas stuff". For the first time in my life I am finding it hard to raise enthusiasm for Christmas.

 

[everydayupsanddowns]

Thanks for the write-up @Pattidevans - really interesting to see how different areas are rolling out the new guidance.

From a technical standpoint the funding situation is different between ‘guidance’ which outlines best practice, and a TA (technology/technical appraisal).

So rather like the TA for insulin pumps, if a consultant decides you meet the criteria defined by NICE, the NHS has to fund the intervention. NICE Guidelines don’t carry the funding guarantees that TAs do.

Interestingly at the DUK SouthWest conference earlier in the year (I was giving a brief patient perspective talk) one of the consultants presented about HCL, and the competely transformative impact it can have on those who cannot (or just don’t) engage with their own self-management for all number of reasons. There is a huge benefit, even as imperfect and clunky as current algorithms are. And some of that benefit has cost-saving implications in terms of keeping folks out of A&E, and inpatient settings.

FWIW, from my experience, I suspect you would find that your excellent self management would possibly be slightly improved with a very slight smoothing out of things (eg overnight), but that you perhaps wouldn’t get very much lifting of mental burden, because you’d just switch to looking after the needs of the algorithm, and implementing workarounds for where the average person for which the algorithm was tailored doesn’t match your specific sensitivities/needs.

 

[Tdm]

So, what you are saying is the algorithm is a lot better than 'poor' control, but unlikely to give much advantage to those who already have 'good' control?
Makes sense. Also i suppose it depends on how much of an issue you have with dawn effect.

I put poor and good in quotes as did not imply judgement but not sure how to phrase it otherwise

 

[everydayupsanddowns]

So, what you are saying is the algorithm is a lot better than 'poor' control, but unlikely to give much advantage to those who already have 'good' control?
Makes sense. Also i suppose it depends on how much of an issue you have with dawn effect.

I put poor and good in quotes as did not imply judgement but not sure how to phrase it otherwise

I think that’s certainly one way of thinking about it. Though I know some members here have felt much more of a lifting of mental burden than I have.

I’ve gained about 10-15% time in range on HCL Tandem tSlim vs the MM640G which was basal suspend only. Broadly speaking I now mostly get 80-95% between 4-9 on the tSlim, rather than mostly 65-85% on the MM640G.

So my results have never been better. But the MM640G was much better at dodging hypos for me, and I’ve had to implement workarounds to keep my time below 4.0 as low as I can and cling on to my carefully repaired hypo warning signs. So I’m back to largely hypo-dodging on my own during the day using sensor alerts in the 5s (which can be a bit naggy).

The odd thing is that overnights on the tSlim are spectacularly good. Which they never were consistently on the 640!

So it’s swings and roundabouts between different systems I think. And it feels unlikely that a commercial system that allowed users to adjust the way the algorithm acted (how early / late and how dramatically) would get FDA / UK approval any time soon - so I think for the forseeable we are going to be living with ‘middle ground’ estimates of what adjustments are likely to work safely and relatively effectively for the majority?

 

[Inka]

Out of interest @everydayupsanddowns what’s the cause of the ‘not being so good at stopping hypos’? Is it the algorithm itself or is it the way the settings work in that they don’t give a quick enough chance to ward off hypos?

Is it something that could be improved in a later iteration of the loop?

 

[everydayupsanddowns]

Out of interest @everydayupsanddowns what’s the cause of the ‘not being so good at stopping hypos’? Is it the algorithm itself or is it the way the settings work in that they don’t give a quick enough chance to ward off hypos?

Is it something that could be improved in a later iteration of the loop?

It is just the decision-making of the algorithms.

Smartguard on the MM640G set a limit 1.1mmol/L above your ’low limit’ and suspended basal if it calculated you’d go below that safety line within 30 minutes.

The tSlim uses a gentler stepped sequence of basal reductions first, and from memory only fully suspends when you are going to go below 4.0 (no extra buffer) within 15 minutes. And often my Dex is fully 10 minutes behind, and only updates every 5 minutes. So depending on quite when my BG drops within those parameters, I have had occasions where I only get a Control IQ ‘suspend‘ alert when a fingerstick shows I am already below 4.0.

Even full basal suspends take about 30 minutes to take any effect for me unfortunately.

 

[PattiEvans]

o, what you are saying is the algorithm is a lot better than 'poor' control, but unlikely to give much advantage to those who already have 'good' control?
Makes sense. Also i suppose it depends on how much of an issue you have with dawn effect.

To be honest a pump would probably sort out your dawn phenomenon, since you can titrate the insulin on an hourly basis. Mine increases exponentially by tiny amounts as the night goes on.

So it’s swings and roundabouts between different systems I think. And it feels unlikely that a commercial system that allowed users to adjust the way the algorithm acted (how early / late and how dramatically) would get FDA / UK approval any time soon - so I think for the forseeable we are going to be living with ‘middle ground’ estimates of what adjustments are likely to work safely and relatively effectively for the majority?

Hmmm I recall you telling me something of that when we met in Taunton. Yet @SB2015 seems to be one for whom it has relieved the mental burden. Perhaps I'll reserve judgement until I know more about it. I've successfully avoided hypos for over 90 days now. Wish I could say the same about post prandial spikes, particularly after lunch and especially if I dare to have a sandwich.

 

[SB2015]

To be honest a pump would probably sort out your dawn phenomenon, since you can titrate the insulin on an hourly basis. Mine increases exponentially by tiny amounts as the night goes on.

Hmmm I recall you telling me something of that when we met in Taunton. Yet @SB2015 seems to be one for whom it has relieved the mental burden. Perhaps I'll reserve judgement until I know more about it. I've successfully avoided hypos for over 90 days now. Wish I could say the same about post prandial spikes, particularly after lunch and especially if I dare to have a sandwich.

Hi @Pattidevans

As you say for me the biggest impact of looping has been the reduction in me thinking about diabetes. I have times when I just ignore my diabetes and the pump just gets on with making the micro adjustments. She interrupts me if she is not happy and asks for some confirmation but most of the time I only interact with the pump at meal times, entering my carbs. previously I would have been checking regularly and trying to micro manage my levels, and having regular hypos as I was so worried about going high. I took its toll on me, and the looping has certainly made me a lot more relaxed about this and everything.

I don’t think the looping will overcome initial spikes after a meal, as that is caused by the action time of the insulin, along with the types of carbs being eaten, but it will do the necessary adjustments after a spike. It took me time on my combo to find appropriate pre meal bolus timings, and these have stayed much the same since looping. I still don’t manage the pre bolus when eating out, but the looping settles things afterwards more quickly.

From what @everydayupsanddowns has said about the 640 with the auto suspend etc I think that the 780 is a step up from that and Medtronic confuse people as they refer to the looping as Smartguard, which was what they called the auto suspend system on the 640. Very different animals.

I also love sleeping so well. Whatever has happened during the day, or if I eat later than I would normally or my meal is more fatty the looping sorts out necessary adjustments and I then ‘flatline’ through the night.

We had a big family lunch yesterday and timings were out the window and carb counts were guesswork as everyone brought contributions to the meal. I just bolused through the very extended meal and still flatlined overnight. For me things are so much easier. Not perfect but we all know that that is impossible, and we just do the best that we can.