Restrictions on obtaining closed loop monitoring

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L1966

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Hello, I welcomed the news, as I'm sure most of us did, that closed loop monitoring systems were to be made available to all type 1 diabetics, from the NHS.
When I asked about this at my local Diabetes nurse appointment, I was told that to qualify, I would need to attend a DAFNE course, or have attended one already.
I don't know if this is one of the Govt qualifying criteria, or just Leicestershire NHS' own policy.
Has anyone else come across this?
 
I don't know about closed loop but DAFNE is a requirement to get a pump in my area.
This seems perfectly reasonable requirement to me as a pump takes a fair amount of investment so I was happy to demonstrate that I was willing to put in that investment of my time to justify the NHS/taxpayer investment of money.
Closed loop may make things a little easier but you still need to carb count and if you have not mastered that basic, you may find it challenging, especially as technology can fail.

So, rather than seeing it as a restriction, I see it as a pre-requisite.
 
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L1966 said:
that closed loop monitoring systems were to be made available to all type 1 diabetics, from the NHS
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Not quite. Not yet, anyway. It'll be offered (over the next 5 years) to most (not all) people with Type 1 (in England). (Likely the criteria will be relaxed during that period so all of us are eligible.)
L1966 said:
When I asked about this at my local Diabetes nurse appointment, I was told that to qualify, I would need to attend a DAFNE course, or have attended one already.
Click to expand...
I think that's probably about safety/practicality rather than trying to restrict who gets it. As I understand it operating a pump (even in a hybrid closed loop) isn't trivial so it makes sense to require some training. It ought to be possible to take that (or most of it) online (so not requiring everyone to be able to attend in person training for the whole lot).
 
Firstly it isn't true that every Type 1 qualifies for a closed loop system at the present time although it is hoped that that will be the case eventually. Secondly even if they did, it takes time and training for people to make the switch to a pump, let alone a closed loop system and the diabetes clinics are already struggling to give appointments to newly diagnosed people let alone train up more DSN's in pump use and then HCL

Unfortunately pumps are not just "plug and play" as perhaps the press has lead people to believe and if the system fails, then the risk of DKA is much higher if you are on a pump, so you have to be pretty confident in your diabetes management and what to do in such circumstances.

The DAFNE course is not just about carb counting as the title suggests, but also understanding basal needs and basal dose adjustment and how to adjust your insulin (basal and bolus) in difficult circumstances like illness or exercise, which I believe the HCL system can struggle to deal with. I appreciate you don't use basal insulin in a pump but you need to understand basal needs and be able to adjust basal profiles to suit your body. The HCL gradually learns what your basal needs are and adjusts to that but if it fails.... or more likely the sensor fails.... you need to be able to operate in manual mode. Having full training is really important to keep you safe.

Is there any particular reason why you are reluctant to do DAFNE? I didn't find the carb counting aspect useful to me at all as I follow a low carb way of eating, but there were many elements of the course which were still really helpful most importantly understanding basal needs and gaining confidence in adjusting my basal, but just spending time with and learning to problem solve for each other taught me a lot. In fact for me the course was sufficiently useful that I now manage my diabetes better than I suspect an HCL could do and at the current time I would not personally have an HCL or even a manual pump if offered, because I don't feel I would benefit from it. But in many areas (but not all) a DAFNE course is a prerequisite to getting a pump. I didn't attend for that reason, I was just keen for knowledge to manage my diabetes better.
 
rebrascora said:
you don't use basal insulin in a pump
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Yes we do have basal insulin. We do not have slow acting insulin. Basal is provided by fast acting.

Sorry, I know I am being pedantic again but it basal insulin is the background insulin which may be provided in different ways. Slow acting insulin is one mechanism. Suggesting pumps do not use basal may give the impression that pump uses need to inject basal separately.
rebrascora said:
The HCL gradually learns what your basal needs are and adjusts to that
Click to expand...
Not for all HCLs.
As I understand there are two different HCL mechanisms
- "machine learning" which, as you describe learns what you typically need
- programmable which is closer to a "traditional" pump basal pattern which we need to set up manually. In this case, the HCL will respond to high BG by giving additional bolus (or, maybe temporary increase to basal) and low BG by suspending basal.
 
As others have said the course makes sense, it is about more than carb counting. I had a half a day training course / set up moving from MDI to pump, I couldn't have done it without this.

And it has been suggested that I attend a Pump-DAFNE course when able, the first dates I couldn't do (last Oct) there's a new session in October, I have signed up, it states firmly on the letter that if I cannot attend this time it will not be offered again as there is a waiting list. I still haven't mastered the temporary basal set up yet, and I have given it a few goes. Like everything with diabetes there are a lot of variables and things to know I wouldn't let the course put you off.

I will add that my nurse checked what level of understanding / knowledge I had about my diabetes and treatment before I went onto the pump. User ability must be considered with this tech, it will not work for everyone's ability, and some will need more support. Everyone is different but they need a system to get most people to the same level.

It is likely each NHS team will have requirements that work for them, from my nurse it sounded as if those already on certain sensors / pumps will be the first group of roll out for them. Which makes sense, as we will need less training to get upto speed and hopefully less support once set up.
 
NHS + PUMP = DAFNE, if you want to qualify for a pump in the NHS system.

Type 1 since ~40 years.
Due to my job I have already done similar courses in Germany and France, but when I was arriving in the UK and wanted to switch to a pump the DAFNE course was the principal request from the NHS for it.

Eventhough you may already know a lot of your diabetes/ treatment/handling/etc.., in this three days you may get some new contact, will learn some more few things and important: You will get in closer contact the local diabetes team.

PS: I was lucky and for me it was the Derby Royal Hospital. I just can recommand this teams. They are/were always very helpful.

Ralf
 
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I did a DAFNE course 18 months after diagnosis. Glad of the chance to meet others who have T1, and learnt a lot. Having done this was a requirement for anyone wanting to go onto a pump.
 
L1966 said:
When I asked about this at my local Diabetes nurse appointment, I was told that to qualify, I would need to attend a DAFNE course, or have attended one already.
Click to expand...

My clinic were happy that I demonstrated DAFNE-equivalent knowledge/approaches so didn’t formally require me to commit to the course.

I think different centres will have slightly differing approaches, but there have certainly been clinical trials that show that simply giving someone the tech doesn’t always confer the expected benefits.

A significant factor is how the tech is used and managed.

The line blurs slightly with hybrid closed loop, which has particular benefit for whose who do not, or cannot, engage with their own diabetes management very intensively.

But for general pump use, I believe the outcomes remain very different based on the level of diabetes-management education that has been offered.
 
rebrascora said:
Firstly it isn't true that every Type 1 qualifies for a closed loop system at the present time although it is hoped that that will be the case eventually. Secondly even if they did, it takes time and training for people to make the switch to a pump, let alone a closed loop system and the diabetes clinics are already struggling to give appointments to newly diagnosed people let alone train up more DSN's in pump use and then HCL

Unfortunately pumps are not just "plug and play" as perhaps the press has lead people to believe and if the system fails, then the risk of DKA is much higher if you are on a pump, so you have to be pretty confident in your diabetes management and what to do in such circumstances.

The DAFNE course is not just about carb counting as the title suggests, but also understanding basal needs and basal dose adjustment and how to adjust your insulin (basal and bolus) in difficult circumstances like illness or exercise, which I believe the HCL system can struggle to deal with. I appreciate you don't use basal insulin in a pump but you need to understand basal needs and be able to adjust basal profiles to suit your body. The HCL gradually learns what your basal needs are and adjusts to that but if it fails.... or more likely the sensor fails.... you need to be able to operate in manual mode. Having full training is really important to keep you safe.

Is there any particular reason why you are reluctant to do DAFNE? I didn't find the carb counting aspect useful to me at all as I follow a low carb way of eating, but there were many elements of the course which were still really helpful most importantly understanding basal needs and gaining confidence in adjusting my basal, but just spending time with and learning to problem solve for each other taught me a lot. In fact for me the course was sufficiently useful that I now manage my diabetes better than I suspect an HCL could do and at the current time I would not personally have an HCL or even a manual pump if offered, because I don't feel I would benefit from it. But in many areas (but not all) a DAFNE course is a prerequisite to getting a pump. I didn't attend for that reason, I was just keen for knowledge to manage my diabetes better.
Click to expand...
Hi Barbara,
I guess I'm one of the lucky, or perhaps just odd, ones who understands about basal dosing and how it all works within our internal systems. I've been diagnosed for 47 years now and gone through all of the changes and improvements in diabetes management since 1977.
I don't know everything and never will, but I know my own body. I do understand that the DAFNE course isn't just about carb counting, but I would say that if the Diabetes Specialist teams had a check in place to gauge their patient's understanding before making attendance on a course mandatory, that would be much more effective.
I suppose I'm fighting against a '1 size fits all' approach, because we are all individual.
Louise
 
Lou - been there done that blah blah BUT!!! think of the info you and I have steeped in our brains that some of the people on the course we happen to get on, don't have at their disposal and just attempt to not feel superior, is all! Don't waste your energy fighting against the immovable mountain - save it for getting to grips with your nice new closed loop pump, cos pumping of any sort needs quite a different mindset - until you get used to it, as ever. 😉
 
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