The 'Golden' 6 1/2 Years and beyond

[kitedoc]

My youngest twin has Down Syndrome. She struggles to pronounce 's' and 'x'.
Soapbox comes out something like: "hopebok" - the hope part which is close to what I would like this post to be.
Yet to be mischievous she calls it a 'bubblebok' 'cos that is what soap does.
From my own reading and experience, not as health professional advice or opinion:
(And if you wish to skip down to the examples/discussion and not wade through the explanation, just find #.)

Diabetes Control and Complication Trial (DCCT)* for TIDs began in USA in 1983.
TIDs in the first 5 years on insulin and some in the first 15 years were in this trial. (Age range 13 to 39)
Random picks were made to one group (INT) for intensive treatment, e.g. (3 + insulin inj, /day, BSL testing+++)
or the other group (CONV) for more conventional treatment, (1 to 2 shots of insulin per day, less testing).

By the 6 1/2 year mark a number of diabetic complications started showing up in people, CONV gp > INT gp.
By 10 years the trial was stopped as the difference between the groups was too great to continue, CONV >> INT.
The CONV group was instructed in the intensive treatment techniques and then all members of the trial were followed
along in the Epidemiology of Diabetes Intervention and Complications (EDIC)* from 1993 and is still going today.
* https://www.alrt.com/Media/Default/Downloads/DCCT-EDIC.pdf
and http://care.diabetesjournals.org/content/37/1/9

The thing is that even when some of the INT group had slacked off a bit with their 'intensive' treatment by and
after the 10 year mark,. and some of the CONV group started up the intensive treatment, differences between the
original groups in number and appearance of diabetic complications ; eye, kidney, nerve, continued. And this
later included things like heart, stroke and artery problems.

(And just in case some readers from their past experience with diabetes might be identifying themselves more
with the CONV group than the INT group I have some comments on that at ## - below the discussion.)

Discusion: #..............................................................................................................................................................#
My endo's viewpoint? The first 6 1/2 years matters. (and other interpretations are welcome)
For a number of us, 1989 or 1993 were past the 6 1/2 or 10 year mark.

So Who does the knowledge of DDCT and EDIC help most? according to my endo, first - children,
diagnosed with T1D, (they have the longest time ahead), second - adults diagnosed with TID or T3D and then
depending on early diagnosis, those with LADA and T2D.

My point? Some examples for consideration and hopefully to reach consensus about: and every other example/suggestion gratefully accepted.

1) Do we inform those whose who post on-line and whose diabetes history suggests they or the one they care for could benefit from knowledge of these trials? Just suggest a reference 'in case the doctor did not get around to it'.? And when not to?
When I type DCCT into the 'urchbok' (searchbox) I get confused by one answer being to do the BSL units and
the other to do with the trials. Could that be made easier to search?

2) And do we expect that that one or more HCP has informed them already about such trial results? -
I must admit over 50 years seeing HPCs regularly I take the approach of the fictional hero, Jack Reacher:
"Hope for the best, plan for the worst." The HCP might forget, not know, or think it will be overloading the patient or
be too casual to mention it, or not wish to alarm the patient, the child is too young etc etc.

3) Do we regard it as an obligation on HCPs that they also provide all the knowledge and skill to help these
persons, particularly children, to obtain the best BSLs possible? - what the best possible methods are possible and not be
worrying about economics, the distractions of big Food but using all approaches, from diet to insulins to lifestyle to technology??
If I am a parent of a child with diabetes wouldn't I wish to know?

4) What suggestions can we make to such persons on-line without giving actual advice? Say, about food, about testing etc?
And if outlining what one's own approach to an issue or problem is - do we need to especially point out the pro's and con's about BSLs etc? - as well as state that we are in the zero to ? 10 year span or later than that?

##...................................................................................................................................................................................##
We know from examples posted on this site of diabetics who have slowed, or stopped or reversed their
diabetes complication(s). I tried looking for some reports in literature and found:
"Reversal of diabetic retinopathy by subcutaneous insulin infusion: a case study."
Kend at al Br J Ophthalmology 1981 Vol 65 307-311. Note 1981 - before DCCT has started. Not many reportsto find
and I see lots of reports about eye injections - not saying that this is not the right treatment but that early intervention and
the 6 1/2 year 'golden opportunity' may be being missed.

But we have more technology and knowledge these days, better detection of early changes in eyes and kidneys and all that.
All is not lost!!

To finish - the other twin pipes up and asks "But how do you have bubbles in a box when they are round and
the box is square"?
What to say? "Well, they need to work out how to fit in with each other".
"Aw , you're silly, Dad. I could make up a better story than that!!"? "Yeah, hilly mad Dad" !!

 

[Deleted Account]

To me there are two things consider which come under the category of “it depends”.
Firstly, how will the person react to this information? Will they dig for more? Are they knowledge hungry? Are they likely to trust a stranger on the internet? Have they posted because they want to fuel their thirst for knowledge? Or because they want to know they are not alone? Or because they want a virtual hug? Do they have the environment around them to make a difference? Or do they have a very stressful job or young family or elderly relative that takes all their time and energy? Do they have the resources: are low carb foods available, can they cook, ...? Is telling them they can reverse their complication likely to make them feel worse, feel guilty because they let themselves get this way?
Secondly, what I often refer to as “balance” but what I mean here is treating the person not the condition. This requires knowledge of the person: what motivates them, what do they do with their life, do they have any other medical conditions, ... What, if anything, are they willing to give up?

As a HCP, I imagine it is incredibly difficult to consider these two things even when the person is sitting in front of them. It takes time to get to know a person and, even if Diabetes was willing to give that time, does the HCP (and the NHS) have that time. And skill.
As a forum member, it is even harder. I think the only thing we have on our side is that the poster has come to the forum for help. But we still don’t know what help and often we can’t give it as we have no magic wand.
I think the best we can do is answer the questions, provide the generic information and be supportive.

 

[tvnerd]

This is a really informative post! I think that HCPs try to first set up a routine for you, because as you mentioned they don’t want the patient to get overwhelmed. However, if the patient is older or if the parents do ask, they should mention trial results so that the patient/ parents/ guardians are well informed. In India HCPs and specialists never talk about different approaches that are being adopted. Even if you do the research yourself they are unwilling to discuss it at all, which I believe is not the correct approach.
On forums people speak from their own experiences and that can be really helpful because you can learn from how someone else dealt with a similar situation. I think online comments could carry a disclaimer though if a person is giving a suggestion that is not standard medical practice so that the reader may make a more well informed decision.

 

[kitedoc]

T

To me there are two things consider which come under the category of “it depends”.
Firstly, how will the person react to this information? Will they dig for more? Are they knowledge hungry? Are they likely to trust a stranger on the internet? Have they posted because they want to fuel their thirst for knowledge? Or because they want to know they are not alone? Or because they want a virtual hug? Do they have the environment around them to make a difference? Or do they have a very stressful job or young family or elderly relative that takes all their time and energy? Do they have the resources: are low carb foods available, can they cook, ...? Is telling them they can reverse their complication likely to make them feel worse, feel guilty because they let themselves get this way?
Secondly, what I often refer to as “balance” but what I mean here is treating the person not the condition. This requires knowledge of the person: what motivates them, what do they do with their life, do they have any other medical conditions, ... What, if anything, are they willing to give up?

As a HCP, I imagine it is incredibly difficult to consider these two things even when the person is sitting in front of them. It takes time to get to know a person and, even if Diabetes was willing to give that time, does the HCP (and the NHS) have that time. And skill.
As a forum member, it is even harder. I think the only thing we have on our side is that the poster has come to the forum for help. But we still don’t know what help and often we can’t give it as we have no magic wand.
I think the best we can do is answer the questions, provide the generic information and be supportive.

Thank you @helensaramay. This site has a Home page with lots of information on it though, and people are often directed to it.
So should we restrict certain information but not other?
How do we know a person with diabetes posting a question has made a well-informed choice about their condition in terms of management? Their question might help to reveal that but how narrowly focussed on the question are we and how prepared are we to engage them in a better understanding of the answer we give?
Is referring them back to their HCP going to help if their problem in part relates to their HCP? Information is power only if it is given or easily found.
Yes, only the OP can decide what they can or wish to change, but without knowledge their choice may be restricted.
And as I wrote, would not most parents of diabetic children wish to know what the options and possibilities are for their child?
And not just fed a 'HCP-derived company line' created from rigid, un-informed guidelines which lack the individuality you quite rightly expect?
Finally, following on, when a patient agrees to a treatment or a parent to the same on behalf of their child, a HCP is supposed to outline the pluses and minuses of that treatment vs that of other known treatments - to not do so is breaching the laws of consent.

 

[Diakat]

In my experience s a patient you have to look for info yourself. I see my consultant less than once a year. ‘My’ DSN has left and I’ve been given a new one, who I have never met yet. I have never had any NHS organised education- except a 10 min carb counting course on the one occasion I met the dietician and a Libre introduction session.
So when are they going to tell me about research studies?

 

[Dark Horse]

The NICE guidance for clinical care of adults with type 1 diabetes is based on the results of these and other trials. If you want to see the evidence considered when setting HbA1c targets, have a look here (Section 8):- https://www.nice.org.uk/guidance/ng17/evidence/full-guideline-435400241

 

[kitedoc]

In my experience s a patient you have to look for info yourself. I see my consultant less than once a year. ‘My’ DSN has left and I’ve been given a new one, who I have never met yet. I have never had any NHS organised education- except a 10 min carb counting course on the one occasion I met the dietician and a Libre introduction session.
So when are they going to tell me about research studies?

Your consultant for one. She or he is supposed to be up-to-date and ensuring that you are aware of new developments (and to discern what is fake or bad research).

 

[DCUKMod]

How long are T1s with their consultant at review time? As a T2 who has never had a formal review of any sort (well, maybe the once I had my feet tickled by a nurse could tick a box), I have no clue.

If consultants are anything like our GPs they might be hijacked by us asking them stuff, but I can't say I've ever had a medic tell me about a new study or research or product - ever. If anything, I have brought up things I have read or seen and sometimes left information with them.

 

[Deleted Account]

Thanks for starting this interesting thread @kitedoc
Like Diakat, I have limited time with the diabetes team less than once every year and it is often a different team (in 15 years, I think the number of consultants I have seen is in double figures) so they have no chance to get to know me and provide the appropriate level of information. I believe my experience is pretty common.
However, my understanding of NICE is they use the results of research to adapt their advice and treatment. I don't think many people want to trawl through research papers. However, there are mechanisms to get to the bottom of the advice and latest research. For example, I have signed up to teems of newsletters such as Diabetes UK (including the one for HCPs), Lancet, Glyvismedia and more.
Whether this forum should provide more information, I think depends on the OP and their question. I tend to go for simple responses so would not refer them to technical research papers. I am also reluctant to scare posters with lists of complications. But I may suggest xyz may help reduce future complications.
The value of the forum is the wealth of knowledge and experience and different personalities which together should give a balanced response.

 

[KK123]

How long are T1s with their consultant at review time? As a T2 who has never had a formal review of any sort (well, maybe the once I had my feet tickled by a nurse could tick a box), I have no clue.

If consultants are anything like our GPs they might be hijacked by us asking them stuff, but I can't say I've ever had a medic tell me about a new study or research or product - ever. If anything, I have brought up things I have read or seen and sometimes left information with them.

Here in Sunny Solihull, the answer is 10 minutes max, same as at the Drs. When you attend there are LOTS of patients in the waiting rooms and it is like a cattle market, weight, blood pressure done by the nurse and ten mins max with the Consultant.

 

[KK123]

I really think the only way of getting this message through is by holding stand alone conferences/meetings on a regular basis. I know many will choose not to attend or be bothered but a leaflet could be given to all patients and the offer made? There is no way any Consultant/Dr is going to be in a position to explain all of this research and experiments to an individual patient (that's if they themselves even understand it all), maybe include it on those Desmond type courses (which I know are few and far between, I have been diabetic 2 years now and it has never been mentioned), BUT it would be a start.

 

[DCUKMod]

For those interested in research and being at the forefront, there's always the NIHR who are always, always calling out for patient voices, and interested parties to go onto feedback loops and so on.

I have learned a massive amount, met lots of great people and expanded my network of connections in the medical fields via this route. Sadly, to date, I haven't qualified to participate in any of the research going on, and almost 3 years in, I'm still eyeing up the door to the room with the DEXA Scanner in it when I stroll past it.

One day. One day.

I thoroughly recommend it.

 

[Cobia]

In my experience s a patient you have to look for info yourself. I see my consultant less than once a year. ‘My’ DSN has left and I’ve been given a new one, who I have never met yet. I have never had any NHS organised education- except a 10 min carb counting course on the one occasion I met the dietician and a Libre introduction session.
So when are they going to tell me about research studies?

Sounds like how i left hospital 3 years ago.... the rapid and basle was given to me the instructions was dont go over 10 dont go under 4....... times do change but should the instructions remain in the jarasic period... even tho im in aus the intructions are the same as the nice guide lines..


Why are the instructions like that and not to change your diet to suit the insulin.

 

[Cobia]

For those interested in research and being at the forefront, there's always the NIHR who are always, always calling out for patient voices, and interested parties to go onto feedback loops and so on.

I have learned a massive amount, met lots of great people and expanded my network of connections in the medical fields via this route. Sadly, to date, I haven't qualified to participate in any of the research going on, and almost 3 years in, I'm still eyeing up the door to the room with the DEXA Scanner in it when I stroll past it.

One day. One day.

I thoroughly recommend it.

You know ive leant more from this forum and people in it than most of the medical profession.


Dosnt matter which type ive got a bit from every one here.

 

[kitedoc]

Thank you @Diakat, @Dark Horse, @helensaramay, @DCUKMod, @KK123, @Cobia for your thoughts and responses.
Some thoughts in response:
HCPs undertake continuing HCP education in order to stay registered and presumably to stay up-to-date in their respective fields - yet we are finding they do not impart new findings that are relevant to our individual health needs
Guidelines for HCPs in various countries about diabetes management are said to be evidence-based and some e.g. NICE guidelines, have extensive processes for evaluating literature which is admirable, but:
# The authors of the Guidelines have not declared or been required to declare any conflicts of interest
# Diet is stuck in low Glycaemic Index, Low Fat mode even when no definite, acceptable evidence backs this,
# They use tainted evidence regarding guidelines on cholesterol
# A statement in Oz gives guarded acceptance of LCHF but not about the
fact that no public-employed dieititian will prescribe it
# no warnings about serious side-effects from several insulins recommended for use in the guidelines
# no mechanism to urgently amend guidelines if new information comes to light
Furthermore:
as mentioned in a post above:
in order for a patient to give consent to treatment they have to be availed of the pluses and minuses of that treatment vs any other treatment particularly when new information/research particularly about serious matters appears and is relevant to their individual health needs
so, are HCPs in potential breach of consent with the 10 minute consult, rapid 'turnover' style of modern medicine?
and does this not make a bit of a joke in any country of the annual review process?
For patients to learn more about their diabetes requires a certain level of health literacy -
the Guidelines for HCPs appear very complex to read and understand
Big Food and Big Pharma place misleading information in newspapers and the like
I agree that educational leaflets, signing up for courses is very useful where the person is motivated and if courses are available
Sites such as this are gold, in the opportunity for people to learn more and be supported - and DCUK 'news flashes' about new research are most welcome.
However can we have more of the Home page information links to things like DCCT ?
Or a past but relevant research, 'translated into actual useful practice' topic, in plain language, of the week?
And 'debates' like Match insulin to food vs Match food to insulin profile, etc??

 

[DCUKMod]

@kitedoc - As a T2, I have never seen a consultant relative to my own diabetes. I have met with loads of Endos, both socially (funny old world I live in!), through consultations for other things, and through the NIHR where I am rather involved. Most are interested in my results and progress, but not all, and one's parting shot to me was that I should be mindful of LADA, as it's a sneaky devil. But, that's the extent of it.

In terms of my own diabetes consultations, I saw a GP, immediately post-diagnosis, who told me not to ask questions, as he had a lot to tell me. I saw the practise nurse who was, frankly patronising and suggested I was telling lies, until she tested my finger prick herself, and four months later, I had a brief, non-standard review, by which time my A1c was in non-diabetic range. That particular sister just suggested I keep doing as I was.

Since than any discussions relating to diabetes, have been with my current GP who asks me lots of questions and is very candid, in stating in know more than she about the condition.

My GP is exactly that. I'd be thrilled if she were the font of all knowledge in terms of diabetes, or anything else for that matter, but she is a generalist, and I cannot imagine she has the time to keep up with latest developments on everything she consults on - even the biggies. By biggies I mean very common stuff like, diabetes, hypertension, asthma, pain, low mood, rashes, thyroid issues. How can she hope to keep right up to dats on any of that? Moreover, even if she could, if someone is not motivated (and by your own suggestion, you allude we are in the minority), how can she communicate her basic message, then turn around a passively compliant patient into a motivated one, and tell them all about the latest stuff in a 10-minute slot?

I see it as my job to keep up to date for me, and where relevant, I share my learning with my Doc. If she knows about it, we'll likely have a decent discussion, and if she doesn't I'll try to leave her with "something for later", mindful she could have plenty other stuff to be looked at.

Of course all of that is way, way, way sub-optimal, but it is what it is, and until our medics basic training changes, and they are given more time, for both their own learning and longer consulting slots, it's how it will stay.

Of course, GPs and many other groups have CPD commitments, but CPD is quite often picked up along the way, reading an article on this, or a presentation, in-house by a rep, or whatever. Any busy professional will put in place a CPD safety net and pick up some metaphoric low hanging fruit, to minimalise the stress come the accounting period. Anyone who says they don't do that is likely being disingenuous in my view. I know in my CPD-able life, that's exactly what I did, so that come the end of the year there was no panic scrapping around to pick up hours and points.

Perhaps T1s find things better, but I can't speak for them, but I do try to be a realist, in terms of what I see in my world. Significantly flawed? Of course it is, but it's what I experience and observe, but I'd rather that than a US style delivery system, where the greeting "How are you?" is immedicately followed (if not preceeded by) "how are you covering your costs today?"

 

[Dark Horse]

The authors of the Guidelines have not declared or been required to declare any conflicts of interest

The list of the Guideline Development Group for the NICE guidelines with declaration of their interests can be found here:-
https://www.nice.org.uk/guidance/ng...CE-project-team-and-declarations-of-interests

The NICE guidelines,Type 1 diabetes in adults: diagnosis and management make this point:-

Although type 1 diabetes in adults is not rare, it is not common enough that all healthcare professionals who deal with it are able to acquire and maintain all the necessary skills for its management. The aim of this guideline is to provide evidence‑based, practical advice on supporting adults with type 1 diabetes to live full, largely unrestricted, lives and to avoid the short‑term and long‑term complications of both the disease and of its treatment.
https://www.nice.org.uk/guidance/ng17/chapter/Introduction
​

The guidelines also state their target audience:-

Who is it for?

• Healthcare professionals that care for adults with diabetes
• Commissioners and providers of diabetes services
• Adults with type 1 diabetes, and their families and carers

 

[kitedoc]

Thank you @DCUKMod and @Dark Horse,
The thread titled 'Questions to ask at the Clinic' sounds like it is doomed as an answer in the real world.
So what do doctors do if the (to them) dreaded list of questions comes out? What do they do to parents ?
I expect that knowledge can be gained cumulatively, by opportunity or from errors made
(and hopefully learned from).
But the 10 minute system is the default position. Everything to do with health in every country
pays homage to time and money!!

But those less well connected socially, less literate or more on the fringe of
society and 'allergic' to doctors, nurses etc are the ones that suffer more.
In a digital age we can expect better but institutions lag behind in their readiness to use the latest
technology for education.
I know in Oz, Diabetes Australia run regular face to face audience type education classes and supermarket
visits in groups but that requires people having transport. Also older persons may not be tech-savvy either.
I am grateful that NICE guideline procedure included conflict of interest statements and how these are dealt with.

I could not agree more about the lucky state that countries with universal healthcare-type systems find themselves in.
Blithely I could ask that the UN step in regarding the USA but they seem to be too busy on worst cases of
human rights abuse even than what is happening in the USA.

Taking Trump's @#^%& Wall off the agenda and putting healthcare as the national crisis there
AND acting on it would be far better.

 

[Cobia]

The list of the Guideline Development Group for the NICE guidelines with declaration of their interests can be found here:-
https://www.nice.org.uk/guidance/ng...CE-project-team-and-declarations-of-interests

The NICE guidelines,Type 1 diabetes in adults: diagnosis and management make this point:-

Although type 1 diabetes in adults is not rare, it is not common enough that all healthcare professionals who deal with it are able to acquire and maintain all the necessary skills for its management. The aim of this guideline is to provide evidence‑based, practical advice on supporting adults with type 1 diabetes to live full, largely unrestricted, lives and to avoid the short‑term and long‑term complications of both the disease and of its treatment.
https://www.nice.org.uk/guidance/ng17/chapter/Introduction
​

The guidelines also state their target audience:-

Who is it for?

• Healthcare professionals that care for adults with diabetes
• Commissioners and providers of diabetes services
• Adults with type 1 diabetes, and their families and carers

You know some people can only hide behind thier bosses skirts.

Glad i have a more pro active doctor here...

Geese i thought this forum was here to help diabetics get a grip on how to handle diabetes. Not the other way around.

Comming from a type1 diagnosed as an adult who had all these new rules in driving instantly applied... good thing my doc gave me 3 months to get some of it under some sort of control.

 

[Cobia]

@kitedoc - As a T2, I have never seen a consultant relative to my own diabetes. I have met with loads of Endos, both socially (funny old world I live in!), through consultations for other things, and through the NIHR where I am rather involved. Most are interested in my results and progress, but not all, and one's parting shot to me was that I should be mindful of LADA, as it's a sneaky devil. But, that's the extent of it.

In terms of my own diabetes consultations, I saw a GP, immediately post-diagnosis, who told me not to ask questions, as he had a lot to tell me. I saw the practise nurse who was, frankly patronising and suggested I was telling lies, until she tested my finger prick herself, and four months later, I had a brief, non-standard review, by which time my A1c was in non-diabetic range. That particular sister just suggested I keep doing as I was.

Since than any discussions relating to diabetes, have been with my current GP who asks me lots of questions and is very candid, in stating in know more than she about the condition.

My GP is exactly that. I'd be thrilled if she were the font of all knowledge in terms of diabetes, or anything else for that matter, but she is a generalist, and I cannot imagine she has the time to keep up with latest developments on everything she consults on - even the biggies. By biggies I mean very common stuff like, diabetes, hypertension, asthma, pain, low mood, rashes, thyroid issues. How can she hope to keep right up to dats on any of that? Moreover, even if she could, if someone is not motivated (and by your own suggestion, you allude we are in the minority), how can she communicate her basic message, then turn around a passively compliant patient into a motivated one, and tell them all about the latest stuff in a 10-minute slot?

I see it as my job to keep up to date for me, and where relevant, I share my learning with my Doc. If she knows about it, we'll likely have a decent discussion, and if she doesn't I'll try to leave her with "something for later", mindful she could have plenty other stuff to be looked at.

Of course all of that is way, way, way sub-optimal, but it is what it is, and until our medics basic training changes, and they are given more time, for both their own learning and longer consulting slots, it's how it will stay.

Of course, GPs and many other groups have CPD commitments, but CPD is quite often picked up along the way, reading an article on this, or a presentation, in-house by a rep, or whatever. Any busy professional will put in place a CPD safety net and pick up some metaphoric low hanging fruit, to minimalise the stress come the accounting period. Anyone who says they don't do that is likely being disingenuous in my view. I know in my CPD-able life, that's exactly what I did, so that come the end of the year there was no panic scrapping around to pick up hours and points.

Perhaps T1s find things better, but I can't speak for them, but I do try to be a realist, in terms of what I see in my world. Significantly flawed? Of course it is, but it's what I experience and observe, but I'd rather that than a US style delivery system, where the greeting "How are you?" is immedicately followed (if not preceeded by) "how are you covering your costs today?"

My thoughts are t1's have the same myths and legends just see doc's more. Things like licence reviews we are watched more...


As for the US..... well its just Trumped. Glad im not living there.

You know what surprised me was the dietitian i saw couple months ago.... i thought id get a lecture for doing VLC or keto when i saw her.... she actually gave me a couple tips to do it better... was missing a simple thing like bread.... problem solved now...


And that was against the dietician association rules here.

Total respect for her.

Point is rules are only guidelines not law.

Just my perspective.

Cheers.