Non-Compliance In Teenage Diabetes

[StephenM]

As long as its insulin I don't see the problem with it being animal. I'd read that those on synthetic insulin get put on animal insulin in later life, I don't know if that's true.

For some people that were started on animal insulin, particularly those who have been on it for decades, there can be issues with loss of hypo awareness if switched to synthetic insulin. This is the case with me and a of number of others on this forum. Sometimes people who have lost hypo awareness on synthetic insulin are switched over (sometimes as a tempory measure) to animal insulin to increase hypo awareness.

 

[StephenM]

Alex is more than compliant - so no worries there - but interested to know what data you have that shows teenage non-compliance is on the increase in Type 1 diabetics?

Did you read #15 the whole way through? I am happy for you that Alex is following the rules. A number do not and this is the point of the thread! As in my 'A' level exams - please discuss!

 

[Northerner]

Did you read #15 the whole way through? I am happy for you that Alex is following the rules. A number do not and this is the point of the thread! As in my 'A' level exams - please discuss!

You haven't yet ventured your own views on how things can be improved Stephen - what do you think the problem is, and how it may be tackled?

 

[bev]

Did you read #15 the whole way through? I am happy for you that Alex is following the rules. A number do not and this is the point of the thread! As in my 'A' level exams - please discuss!

Yes I did. The 'impression' of one GP that there are more non-compliance cases in teenagers really isnt accurate data. I was interested to know what figures you have that supports your theory (or the GP's theory) that figures are on the increase.

 

[DeusXM]

Isnt that what I said - the age of 25? If the frontal lobe is developed at 25 why would parents still be needed until they are 30 if they are then able to make decisions that involve risk-taking at 25?

Well I was working on the assumption that 'after the 20s' meant 'after the 20s' ie once the person was in their 30s.

So please can we discuss the issue of non-compliance and ways of addressing it?

My belief (based purely on my own experience and bit of pop psychology) is that if you transfer responsibility to your teenager, they'll be more inclined to take on the challenge and comply. It's like the alcohol point you mentioned Stephen - you entrust the teen with something 'grown up' and the hope is that they 'grow up' as a result. Obviously it doesn't always work but I think the point that's been made about a care situation where a teen is a passive bystander where diabetes is something that adults do to them, rather than their medical condition they have to manage, is precisely the sort of situation that inflames rebellion.

I suspect as well (if we accept there is a higher degree of non-compliance today) there is a point to be made about intensive treatment. My understanding is that 30-40 years ago, you would be on one or two injections a day without blood testing, so diabetes was in fact a small part of your life. Proportionally today, diabetes takes up more time. Probably every teenager is on MDI at the very least (so now that's a reminder at every meal) plus several blood tests. I'll be honest, the amount of work that diabetes can require depresses me from time to time, and I'm a reasonable approximation of a fully fledged adult. It is a lot harder when you're a teenager particularly if you're led to believe you're living and dying over individual results. It was only after I decided to take a rather different mental approach to my treatment that as a teen I stopped getting all bi-polar over the odd high or low, and my overall control improved dramatically as a result, not to mention my mood.

The error margin with new treatments is also much higher, I would think. If something goes wrong with a pump, that can have dramatic repercussions on overall BG, something that might have been less likely with Lente. Having said that, anyone who thinks that pumps can be a problem over night with highs or lows should try sleeping with Insulatard as a basal - five hypos in one night and then a complete failure to hold back DP is not a good way to spend an evening! But generally yes, it's far easier to make mistakes with MDI and pumps as these tools are much more powerful. I personally wouldn't ever want to go back to Insulatard or the mix insulins but I do recognise that these do to some extent make quite good 'training wheels' for before you get onto the good stuff.

So yeah, my suggestion is give teenagers the responsibility of managing their own condition with the parent as the backstop and Alamo, make sure that diabetes is just part of their life like brushing their teeth rather than making everything about their blood sugar, and teach them that they're in control and they shouldn't be beating themselves up over the odd 'bad' result. There are no 'bad' results, there's just times when you didn't treat your diabetes as effectively as you could.

 

[Northerner]

I suspect there are a myriad reasons why a teenager might become non-compliant. One of the points that some members have made here in the past has been the problems with trainsition from child to adult care, sometimes as young as 16. This often places the person in an environment where they are surrounded by elderly diabetics suffering all sorts of complications whilst they wait for their appointments, and is therefore quite depressing and they wonder what they are doing there. As a result, many may be reluctant to attend. Even worse if the consultant they see when they do attend is the type to use the 'stick' approach and berate the person for getting poor results rather than looking for positive ways to improve things.

Teenagers can feel invincible also, and the vague threat of complications may not really register, as it happens to 'other people', or maybe just to 'old people' i.e. 30+. Certainly, when I was a teen, although I didn't have diabetes, I smoked like a chimney and drank like a fish even though I knew it probably wasn't doing me any good.

A while back I read about a parent who had brought up their child on MDI, but using huge numbers of injections to mimic the way a pump might operate - so multiple injections for food, and corrections when things strayed slightly out of range. Needless to say, that person rebelled once they got older, so I can certainly see that making life all about diabetes can lead a person to resent it and ignore it.

 

[bev]

Hi Northerner,

As Redkite said - Ragnar Hannas (and others from FFL) recommend staying pro-active with a teenager as research shows that the longer a parent/carer is involved the better the outcome for them and less likely to rebel. In America they have changed the age of transition to adult clinic to around the age of 25 - unless the person choose's to move over earlier - simply because it is also recognised that a person might feel 'abandoned' to the adult clinic where they are given less support and where they have no history with the team and are surrounded by much older people who they cant relate to. I do think moving them at the age of 16 is too young (as do our team). Alex is now moving into the 'teenagers transition' clinic and I have asked that I stay outside the room for his Consultation so he gets more privacy and is able to learn how to get the best out of our team on his own - our team agree and said it is good practice for them to move onto adult clinic. I think sometimes a teenager just feels embarrased dealing with Consultants and DSN's so the more practice they can have the better!Bev

 

[Redkite]

So yeah, my suggestion is give teenagers the responsibility of managing their own condition with the parent as the backstop and Alamo, make sure that diabetes is just part of their life like brushing their teeth rather than making everything about their blood sugar, and teach them that they're in control and they shouldn't be beating themselves up over the odd 'bad' result. There are no 'bad' results, there's just times when you didn't treat your diabetes as effectively as you could.

I completely agree with your final paragraph, and that is exactly the approach I (and most other parents I know) am taking!

Stephen - if you are asking what "we" as a support forum can do to help with the problem of teenage non-compliance, then all we can really do is be here to support and advise when teens or their families come here for advice. If you are thinking of effecting change at a higher level, first you need to gather some valid statistics (not just your GP mate's impression), and then campaign (perhaps in conjunction with JDRF or DUK) to improve paediatric services for type 1 kids, so that best practice becomes the norm rather than the exception. A change of attitude is also required in schools, where support is often woefully poor. Many parents have been lobbying for such changes for a long time, so we would welcome others to throw their weight behind this cause.

 

[DeusXM]

In America they have changed the age of transition to adult clinic to around the age of 25 - unless the person choose's to move over earlier - simply because it is also recognised that a person might feel 'abandoned' to the adult clinic where they are given less support and where they have no history with the team and are surrounded by much older people who they cant relate to.

I'd have been absolutely appalled if I was 22 and it was still regarded appropriate for me to be in a "children's" clinic - frankly I would have found that insulting and patronising. Not to mention the advice would be dreadful - what on earth could a paediatrician possibly tell me about managing hypos during sex or how to deal with alcohol? A doctor who primarily sees infants and young teenagers is not an appropriate person to provide guidance for adults. I don't know about anyone else, but at 16 the last thing I wanted was to be doted on like I was a child. I wanted to be an adult and do all the things that adults do, independent of my parents. I wanted to get out of that child clinic as soon as I could because it was always filled with children playing with Duplo. And I'm sure that if I stayed in that clinic, I would have rebelled. Every person is different but I'm a great believer in pushing people just a little bit out of their comfort zones as it makes you grow up very quickly.

A much better option would be to have dedicated T1 and T2 clinics for over-16s. Not only would that act as a sagely reminder to doctors and nurses that the conditions are different, it would also mean that the people in the waiting room would be far more likely to have things in common.

 

[AJLang]

I valued my independence as a teenager. Went out drinking (when I was 16 oops), went on holiday abroad several times (without parents) and bought my first house when I was 19. I couldn't do all of this unless I managed my diabetes myself......and I haven't collapsed from a hypo since I was 16 or had DKA since I was 10. Tough love withe diabetes allowed me the freedom to do all of the things that I've done. Yes there was the ever constant fear of Hypos during the night and complications.....but life can't be lived worrying about these. I nearly died in a car accident when I was 23 and my cousin was killed in a car crash at 30 - neither of these was diabetes related. This is just me talking about my experience.

 

[bev]

I'd have been absolutely appalled if I was 22 and it was still regarded appropriate for me to be in a "children's" clinic - frankly I would have found that insulting and patronising. Firstly - as I said - it is left down to individual choice - and secondly where are you getting 'childrens' clinic from? The teams today split the age groups so for example Alex never goes to the same clinic as anyone under the age of 12 as they are held on different days. Not to mention the advice would be dreadful - what on earth could a paediatrician possibly tell me about managing hypos during sex or how to deal with alcohol? Well not sure about your team but ours actively encourage these discussions on a regular basis and have teenage discussion groups without parents present. Things have changed a lot since you were a teenager clearly as it is all done in an age-appropriate way - we dont have 2 year olds mixing with 16 year olds at clinic like you seem to have had. A doctor who primarily sees infants and young teenagers is not an appropriate person to provide guidance for adults. I disagree - they are also adults themselves and I know many teenagers at our clinic who have had these sorts of discussions with our Consultant. I don't know about anyone else, but at 16 the last thing I wanted was to be doted on like I was a child. I wanted to be an adult and do all the things that adults do, independent of my parents. Yes thats right - so does Alex and all other teenagers at our clinic - they are all independent. I wanted to get out of that child clinic as soon as I could because it was always filled with children playing with Duplo. And I'm sure that if I stayed in that clinic, I would have rebelled. Possibly - but as our teenagers dont mix with younger age groups at clinic then its not a problem - as I said things have changed a lot since you were a teenager. Every person is different but I'm a great believer in pushing people just a little bit out of their comfort zones as it makes you grow up very quickly.

A much better option would be to have dedicated T1 and T2 clinics for over-16s. Not only would that act as a sagely reminder to doctors and nurses that the conditions are different, it would also mean that the people in the waiting room would be far more likely to have things in common.

From what you have described - you had a very different experience of clinics as a teenager - thankfully things are much different now and teenagers are treated in an age-appropriate way - as young adults.

 

[DeusXM]

I suspect Bev it's more to do with the hospital I was at, rather than timing - I was a teenager less than 10 years ago. You're making it sound like all this happened in the dark ages whereas I was in the child clinic as recently as 2002. We had Lantus and blood testing and pumps and everything, you know. The only major advances in T1 therapy since then (to my mind) have been the introduction of CGMS (still very rare), Levemir and loosening of funding for pumps to make them more widespread. The fact is I'm on the same treatment regime I was on 12 years ago largely because it's still the best regime according to NICE guidelines as I don't meet the criteria for a pump. So please, don't be quite so dismissive of my age or suggest my experience has no relevance - I'm sure you'll find in less populated areas they don't have all the perks you have with your clinic. I can accept my experience isn't necessarily typical of all teens with diabetes - maybe you could also accept that yours isn't necessarily the norm for everyone too?

My particular hospital did want to run a transitional clinic (which I agree is essential, the leap from child to adult clinic can be a bit jarring) but the fact was they simply had neither the staff nor enough patients to make this worthwhile.

I disagree - they are also adults themselves and I know many teenagers at our clinic who have had these sorts of discussions with our Consultant.

'Being an adult' isn't really an appropriate qualification in its own right though. Once again, I can only speak for the clinic I went to but the care team there were paediatric specialists. I'm sure they could provide outline guidance but conversely I very much doubt they'd be particularly up to date as it wouldn't be a field they'd be expected to be current in.

If the majority of your job is treating under-12s, you probably aren't particularly familiar with the diabetes experience of sex hypos or what vodka does to your glycogen release system to the same extent that a doctor specialising in diabetes in adults would be.

Another flipside to this is I personally would not be comfortable discussing these matters with a consultant who's known me since I was a child, it'd feel a bit like discussing it with my parents. If my parents had a close working relationship with the care team I would be particularly concerned about patient confidentiality and the fact that my mother would be sitting outside the room wouldn't inspire me with much confidence either. Again, yes, I can only speak for myself but I'm sure plenty of teenager will have similar feelings.

I think it's great that Alex appears to have a lot of support around him to manage his diabetes and that he is the personality type that appears to respond well to that support. However, not all teenagers will respond quite so well. There is value in exploring why that is, and I'm sure your experiences and way of doing things would be beneficial for plenty of families in the same boat as you. I'm also sure that there will be teenagers and their families reading my experiences and reactions and seeing a lot of themselves in there too. Some teens benefit from having intensive support and parental involvement. Some suffer for it. It's also probably quite hard to predict which teen is which until it's a bit too late, too.

 

[everydayupsanddowns]

It's interesting, in the light of these discussions, that the new NICE guidelines/updates which are currently 'in production' separate out children and teenagers from the general CG15 for adults. They are also creating a new guideline especially for pregnancy as it is recognised (rightly I think) that certain times in life require slightly different approaches.

Personally I suspect that, once again, there is not going to be a 'one size fits all'. Different people will react to T1D differently through their teen years. There may well be some 'best practice' gems that we can hope would become the standard across the country, but that still will not prevent every teen from stuggling, at some point, with their D, while others will just sail through transitioning from childhood to adult PWD without a whiff of rebellion.

I'm heartened by what I read of peer-support/camps/conferences which seems to make a big difference in some people and lets them know they are not struggling alone. But I also know that there is NO WAY I would have wanted to be involved in that when I was Dx in my early 20s. What can be done for those that really struggle to turn their relationship with their D around I really don't know.

 

[Twitchy]

It's an interesting debate, but I agree, it's probably far too subjective & personal for a simple / easy answer.

I don't actually remember going from child to adult clinics but I remember there was an aspect of being 'non compliant' simply by default until I was on mdi & did a dafne course, as noone had really explained the rules, just tutted if the numbers weren't right & suggested tweaks without explaining why they'd help. I don't think there was much on the internet to help either.

As for the transition clinics etc, I guess either you 'click' with your doc or not - I'm lucky, mine is fab & now it feels like a team effort (hence encouragement etc not rollickings). The doc I saw when at uni seemed (vague memories!) quite negative...but maybe that's more how I felt, I don't know.

As for the more, erm, 'intimate' conversations, I don't think I would ever talk to a doc about that lol, I'd rather figure that one out for myself! 😱

 

[bev]

I suspect Bev it's more to do with the hospital I was at, rather than timing - I was a teenager less than 10 years ago. You're making it sound like all this happened in the dark ages whereas I was in the child clinic as recently as 2002. I didnt do that you did - you likened it to having to be with children playing lego. We had Lantus and blood testing and pumps and everything, you know. The only major advances in T1 therapy since then (to my mind) have been the introduction of CGMS (still very rare), Levemir and loosening of funding for pumps to make them more widespread. The fact is I'm on the same treatment regime I was on 12 years ago largely because it's still the best regime according to NICE guidelines as I don't meet the criteria for a pump. So please, don't be quite so dismissive of my age or suggest my experience has no relevance - I'm sure you'll find in less populated areas they don't have all the perks you have with your clinic. Not being dismissive just going on what you are telling us - your clinic had a mix of ages that we dont have now. I can accept my experience isn't necessarily typical of all teens with diabetes - maybe you could also accept that yours isn't necessarily the norm for everyone too? The circles we move in this is the norm.

My particular hospital did want to run a transitional clinic (which I agree is essential, the leap from child to adult clinic can be a bit jarring) but the fact was they simply had neither the staff nor enough patients to make this worthwhile. Happily our team are able to offer this and its a great success.



'Being an adult' isn't really an appropriate qualification in its own right though. Once again, I can only speak for the clinic I went to but the care team there were paediatric specialists. I'm sure they could provide outline guidance but conversely I very much doubt they'd be particularly up to date as it wouldn't be a field they'd be expected to be current in. Not correct - our team are able to answer all these questions at whatever age the young person asks them - which is left to them to ask.

If the majority of your job is treating under-12s, you probably aren't particularly familiar with the diabetes experience of sex hypos or what vodka does to your glycogen release system to the same extent that a doctor specialising in diabetes in adults would be. Luckily our team are - but I agree that some arent - however - dare I say this......thats why I also like to take Alex to the Conferences as they also have these talks there - two Consultants last year told our teens all about their sexual exploits as they both had a pump and explained the full story from beginning to end including hypo's and other stuff to our teens who all asked questions at the end! Our team also do talks at these Conferences which is why we are with them - gold standard care.Others talked to the teenagers about alcohol and advised how to drink safely - and yes explaining all about what happens to the liver at 3 in the morning which is why our teenagers now have a better understanding and idea of how to drink safely - all excellent advice - even though your not keen on us taking them to Conferences.....

Another flipside to this is I personally would not be comfortable discussing these matters with a consultant who's known me since I was a child, it'd feel a bit like discussing it with my parents. If my parents had a close working relationship with the care team I would be particularly concerned about patient confidentiality and the fact that my mother would be sitting outside the room wouldn't inspire me with much confidence either. Teams are not allwed to share any private information with a parent unless the young person gives permission - so not a problem. Again, yes, I can only speak for myself but I'm sure plenty of teenager will have similar feelings.

I think it's great that Alex appears to have a lot of support around him to manage his diabetes and that he is the personality type that appears to respond well to that support. However, not all teenagers will respond quite so well. There is value in exploring why that is, and I'm sure your experiences and way of doing things would be beneficial for plenty of families in the same boat as you. I'm also sure that there will be teenagers and their families reading my experiences and reactions and seeing a lot of themselves in there too. Some teens benefit from having intensive support and parental involvement. Some suffer for it. It's also probably quite hard to predict which teen is which until it's a bit too late, too.

I agree - which is why I asked what the data is to support this theory - and also explained that the latest research shows that the longer a parent is involved the better the outcome. There is also the question of age at diagnosis - a 10 year old will adjust better than a 16 year old in terms of the change simply due to the fact that at 16 they will have experienced the freedom that other teenagers have had whereas obviously a 10 year old wont know any different.


I would strongly recommend you attend one of the FFL Conferences - it will open your eyes to how us pro-active parents educate our young adults about diabetes so they can go on to be independent individuals who know what they are doing in terms of their health but also to give them strategies for dealing with diabetes burnout and other subjects that might create a rebellion - including depression sex and alcohol - the realities of normal life!

 

[Lauras87]

If the majority of your job is treating under-12s, you probably aren't particularly familiar with the diabetes experience of sex hypos or what vodka does to your glycogen release system to the same extent that a doctor specialising in diabetes in adults would be.

i've never had the sex chat apart from my DSN scaring the hell out of me by saying if i got pregnant the baby would be born blind/heart defects/limbs missing etc
i just test both before & after - it kills the mood but better to be safe than sorry

what does vodka do to glycogen release system?

you've grabbed my attention!

 

[Andy HB]

what does vodka do to glycogen release system?

My guess is that it stops/reduces it (as does all alcohol).

Andy 🙂

 

[DeusXM]

what does vodka do to glycogen release system?

you've grabbed my attention!

Mostly the same thing as any other booze - it blocks your liver releasing glycogen, generally around 4-5 hour mark after consumption. Most other Ds I know find that vodka also doesn't raise their BG initially, so generally if you primarily drinking vodka, you will need to either make adjustments to your basal or if this isn't an option, eat a carby snack. However, you'll still need to bolus for this snack which then means you need to take into account the digestion profile of the meal you're eating, the action profile of the bolus insulin you're taking, and the glycogen blocking profile of the vodka you've been drinking and then get these all to roughly match up in such a way that you don't get a BG wobble.

I'm not saying it's completely impossible for a paediatric diabetes specialist to advise in these situations but it is probably something they only deal with maybe 5-10% of their working time, compared to an adult specialist who will probably deal with this much further. There may also be a tendency for paediatric staff to be a bit more 'moral' about their advice who might simply tell a 16-year-old not to drink, which isn't helpful.

The point is as teenager I would have been far more forthcoming with the 'adult' staff than the paediatric staff on these sorts of questions - whether or not there are official rules about doctor confidentiality probably matters very little to a teenager, who is likely to be disposed to assuming adults are against them.

 

[everydayupsanddowns]

I'm not saying it's completely impossible for a paediatric diabetes specialist to advise in these situations but it is probably something they only deal with maybe 5-10% of their working time, compared to an adult specialist who will probably deal with this much further.

I wonder whether you are used to getting *much* more detailed advice than I am DM - I'm not sure I'd get much out of my team other than general principles and 'see how it goes'.

I'm also not entirely convinced about this:

There may also be a tendency for paediatric staff to be a bit more 'moral' about their advice who might simply tell a 16-year-old not to drink, which isn't helpful.

I half wonder if a specialist who deals with teens on a much more regular basis would be more grounded/experienced in age-appropriate advice because they are more in touch with the realities/behaviours of young people whereas consultants who only ever deal with adults might be more likely to take the view of "well you shouldn't even be drinking at your age!". I guess it would depend on the individuals involved.

I think you do make important points about young people feeling they are not being treated as children though, and I'm sure for many that would be important. Though I guess others might struggle to open up to 'strangers' if they have had a good relationship with a consultant for many years and have built up a degree of trust and understanding.

As ever YDMV 🙂

 

[Lauras87]

Mostly the same thing as any other booze - it blocks your liver releasing glycogen, generally around 4-5 hour mark after consumption. Most other Ds I know find that vodka also doesn't raise their BG initially, so generally if you primarily drinking vodka, you will need to either make adjustments to your basal or if this isn't an option, eat a carby snack. However, you'll still need to bolus for this snack which then means you need to take into account the digestion profile of the meal you're eating, the action profile of the bolus insulin you're taking, and the glycogen blocking profile of the vodka you've been drinking and then get these all to roughly match up in such a way that you don't get a BG wobble.

I'm not saying it's completely impossible for a paediatric diabetes specialist to advise in these situations but it is probably something they only deal with maybe 5-10% of their working time, compared to an adult specialist who will probably deal with this much further. There may also be a tendency for paediatric staff to be a bit more 'moral' about their advice who might simply tell a 16-year-old not to drink, which isn't helpful.

The point is as teenager I would have been far more forthcoming with the 'adult' staff than the paediatric staff on these sorts of questions - whether or not there are official rules about doctor confidentiality probably matters very little to a teenager, who is likely to be disposed to assuming adults are against them.

Awwww I was expecting a different response to what you said

I find spirits are the only booze not to raise my bloods.