First appointment with community diabetic team – moving on to insulin - any advice please

Molly56

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In just over three weeks time my partner has his first appointment with the community diabetic team to discuss going on to insulin.

He was referred back in November by the practice diabetic nurse as his current medication is not getting his blood sugar levels down to an acceptable level …..current medication 2000mg Metformin plus 320mg Gliclazide per day…HbA1c in November was 74 or 8.9% if I remember correctly..

For those that have taken this route I just wanted to ask what information would be useful to take along to this first appointment in order to help them to make the right decisions about the insulin regime that he needs.

Did they make a decision about insulin at this first appointment and prescribe what is required at that appointment or is this effectively just an initial assessment……how does it generally work in terms of follow up appointments…… (am just wondering what time I need to make available from work commitments in the following weeks should further / follow up appointments be needed)…

My partner was reluctant to test but has eventually been persuaded to keep a record of blood sugar levels to take along to the appointment……these are taken in the morning when getting up (so effectively fasting)…before evening meal….and before bed…am keeping a daily chart of these (three days completed to date) so will have about three weeks readings by the time of the appointment……Is this sufficient information to take along and the appropriate timings or does anyone suggest anything else…

Generally speaking he does not follow a conventional pattern in terms of eating meals at regular times…..he invariably gets up late / skips breakfast ….has lunch and dinner…and snacks during the evening…..I guess that this will also be useful information for them when deciding what insulin regime they can put him on……also at 18st 12 approx he is clearly overweight which will probably be another factor…

He has just had another HbA1c blood test plus EGFR eGFR (MDRD)and (UE) Urea & Electrolytes as requested by them so assume that these are all the blood tests they will need in order to make their decision. They have not asked for a urine sample but may suggest taking one along just in case it is needed.

Is there any other information that would be useful as I am keen to make sure that having waited this long for the appointment we do not delay any further this next step….

If anyone has any other advice from personal experience to get us through this next step it would be appreciated as it all seems a bit of a minefield / uncharted territory to me at the moment, thank you
 

Bufger

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From personal experience (same start weight and eating pattern) he needs to want to do this. It sounds as if he's not taking diabetes seriously or he's depressed\in denial. Insulin is just one more thing to remember and regulate but equally important are meal times and what you eat and regular blood sugar checks.

He needs to research and see the consequence of his denial. Does he like computer games and movies? Show him how common retinopathy is in people with diabetes.

In terms of the insulin regime they'll set him on a standard routine and adjust from there don't expect it to work straight away. He will probably experience minor hypo like symptoms when his levels reach 4-6 if he's been running high for a long time.
 
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donnellysdogs

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It apesrs that Mollly is asking what this standard routine of insulin is...

Would it be one basal injection, 2 mixed injectins or a basal/ bolus regime?

Would partner need to carb count?

Would partner be told to carb count?
 

Molly56

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From personal experience (same start weight and eating pattern) he needs to want to do this. It sounds as if he's not taking diabetes seriously or he's depressed\in denial. Insulin is just one more thing to remember and regulate but equally important are meal times and what you eat and regular blood sugar checks.

He needs to research and see the consequence of his denial. Does he like computer games and movies? Show him how common retinopathy is in people with diabetes.

In terms of the insulin regime they'll set him on a standard routine and adjust from there don't expect it to work straight away. He will probably experience minor hypo like symptoms when his levels reach 4-6 if he's been running high for a long time.

@Bufger …thank you for reply….it is useful to hear from someone who has gone through same experience….

Hope you don’t mind but I have a few questions..

Am hoping that he will want to do this but can see that it will not be an easy transition given his past history of not wanting to know / do anything about his diabetes…hopefully I can be there to support him on this but he needs to do this himself…

I can see that things will have to change in terms of regulating his day more….you mention that you started off on a standard regime….what did this consist of ….
…how long did it take to adjust this and get to a routine that was right for you…

Do they prescribe the insulin at the first appointment or did you have to return for further appointments….how quickly was this after the initial consultation….once on the insulin and going through period of adjustment was this done through telephone consultations or through further appointments…
…..apologies for all the questions but I need to know…..he has a habit of not listening to or taking in information so I will need to be included (at all steps) as part of the process to make sure that I know what he needs to do….and I need to fit this in with my work commitments so will be helpful to know and plan….

You mention retinopathy….is this something you have experience of….I seem to remember reading somewhere that bringing blood sugar levels down too quickly can make any existing retinopathy worse so will have to be something to be aware of…
…my partner does attend his annual retinopathy screening…the last one was April 2014…it was detected that he had a degree of background retinopathy but the letter just suggested that he should keep his blood sugar levels under control and attend his next annual screening….no treatment currently required……he read this to say “my eyes are ok” and just dismissed it ……I read it differently…

…anyway his eyesight is important….not for the reasons you mention though they are important but because he drives….if he was unable to drive he would effectively be housebound as no other means of getting out other than if I am around to take him (he is retired and relatively inactive / immobile / relies on his car but I still work)……this I think would be the major life changer for him as I still work and need to work….

His current levels in the morning have been around 11 with before dinner readings of between 16 and 21 and bedtime readings around 17
…..don’t know how long it will take to bring these down to near normal levels but this will be in the hands of the diabetic team to decide….



It apesrs that Mollly is asking what this standard routine of insulin is...

Would it be one basal injection, 2 mixed injectins or a basal/ bolus regime?

Would partner need to carb count?

Would partner be told to carb count?

@donnellysdogs added a few questions….some answers to these would be useful if anyone cares to answer them….
 

Bufger

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If expect them to put him on a bolus with meals but advise he needs 3 consistently timed meals.

I don't have any experience with the retinopathy side of things and I'm hoping not to! If he's had early signs things will only get worse with those BG readings.

I really feel for you because I was him before on a number of health issues but I wouldn't listen to anyone back then. Who would he listen to? Get him on here and he may see other people in his position and respond?
 

Molly56

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@phoenix ....thanks for the link....will take a good look through that later to see what to expect and make a note of any potential questions to take to the appointment with me....is always good to be prepared (must be the Girl Guide in me!)

..is also good to have some first hand experience from other members of the forum as to how it actually works in practice though...
 
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donnellysdogs

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There is a post somewhere of someone else asking what its like to change from tablets to insulin. Unless I've dreamt it. Can't find it tho!:(
 

Daibell

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Hi. I can only relate my own story if that helps. My diabetes GP finally realised that tablets weren't working with an HBa1C above 8% and still thin. She referred me to the DN to go onto insulin. It turned out that the DN previously worked in the local diabetes clinic and in the surgery dealt with all the insulin users; an excellent start. She has been superb. She immediately discussed Basal insulin types with me and as I'ma gym user put me onto Levemir once a day. Started me on 10 units based on my weight and asked me to email her my readings over several days and come back in 4 weeks. After 4 weeks we agreed my redings weren't good enough so she immediately added Bolus insulin, Novorapid, and showed me carb-counting on the spot and said to start with a ratio of 1:10. She said to email her with any problems but there haven't been any and the 6 monthly reviews have been a friendly chat session. Sadly this DN has now left. In summary, I was very lucky with this DN. I would suggest you push for Basal/Bolus rather than mixed if you can. I was offered a choice of pen types i.e. disposable or throwaway. Being a re-cycling freak I went for refillable (by cartridge) which was the right decision. My DN spotted quickly that I was an engineering nerd with a lot of knowledge already (from this forum and the web and diabetes for 7 years) so we moved on quickly. I have never been offered any course or dietician and have never wanted one. My DN never asked about my diet but could see I was slim and I think she assumed I was having a sensible diet already. Before the insulin I was on Metformin 2000mg, Gliclazide 320mg and Sitaglitpn 100mg so it was obvious insulin was needed. I asked my DN what needle size she was prescribing and she said 4mm which is the smallest (good). Make sure you are prescribed the smallest consistent with your skin/fat thickness. I was shown how to inject on my first visit. Do ask any questions and good luck.
 
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Molly56

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Hi. I can only relate my own story if that helps. My diabetes GP finally realised that tablets weren't working with an HBa1C above 8% and still thin. She referred me to the DN to go onto insulin. It turned out that the DN previously worked in the local diabetes clinic and in the surgery dealt with all the insulin users; an excellent start. She has been superb. She immediately discussed Basal insulin types with me and as I'ma gym user put me onto Levemir once a day. Started me on 10 units based on my weight and asked me to email her my readings over several days and come back in 4 weeks. After 4 weeks we agreed my redings weren't good enough so she immediately added Bolus insulin, Novorapid, and showed me carb-counting on the spot and said to start with a ratio of 1:10. She said to email her with any problems but there haven't been any and the 6 monthly reviews have been a friendly chat session. Sadly this DN has now left. In summary, I was very lucky with this DN. I would suggest you push for Basal/Bolus rather than mixed if you can. I was offered a choice of pen types i.e. disposable or throwaway. Being a re-cycling freak I went for refillable (by cartridge) which was the right decision. My DN spotted quickly that I was an engineering nerd with a lot of knowledge already (from this forum and the web and diabetes for 7 years) so we moved on quickly. I have never been offered any course or dietician and have never wanted one. My DN never asked about my diet but could see I was slim and I think she assumed I was having a sensible diet already. Before the insulin I was on Metformin 2000mg, Gliclazide 320mg and Sitaglitpn 100mg so it was obvious insulin was needed. I asked my DN what needle size she was prescribing and she said 4mm which is the smallest (good). Make sure you are prescribed the smallest consistent with your skin/fat thickness. I was shown how to inject on my first visit. Do ask any questions and good luck.
@Daibell .....thank you for this ....it is very helpful to hear personal experiences as to how this works in practice.....keeping in touch by email sounds a very sensible way of communicating whilst trying to get the right regime sorted out....perhaps that is something I can suggest if I have any questions following on from the initial appointment......sometimes communicating by telephone is not that easy when people are busy and at least with emails you have a copy of what is being proposed that can be referred back to if necessary....
....not sure if this will be possible or the way they do things but is worth asking.....
 

Molly56

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Just a quick update as now just two weeks until insulin appointment….

HbA1c (according to the hospital at a pre op assessment) is now around the 90 mark or 10.5% so has increased since last test in Oct / Nov (74 or 8.9%)

Blood sugar readings taken over the last 10 days have ranged from
10.6 to 13.4 first thing in the morning (fasting)
14.3 to 17.6 pre dinner
11.7 to 17.1 before bed

Current weight 120kg …..18st 12lb…..BMI 37.9

Would be interested to hear what insulin regimes people were put on when starting off on insulin and how they found the transition.

It would be useful to know what particular insulin was offered as a starting point so that I can read up on the options before the appointment and go prepared with any potential questions I may have…

..unfortunately my partner has little interest in wanting to find out what the options are and has no real concept of what will be involved in terms of testing and calculating amount of insulin required……in fact, recent comments have shown that his lack of understanding is nothing short of worrying…

...the more information I can gain in order to make this process as smooth as possible will make this less stressful for the both of us…..
 

fairylights

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I went to my GP one day and was sent to see the DSN at the hospital the next (due to BGL of 35 and ketones). I was injecting insulin within 10 minutes of being in the door.

I started on a mixed insulin which worked quite well for the first few months, even had to decrease the dose a few times. I think I was in the honeymoon period. It gradually became less effective and I asked to go on to basal/bolus as I wasn't getting control any more. Then I went on a DAFNE course and I've now been passed to get an insulin pump as I still have issues with Dawn Phenomenon.

I thought starting on a mixed insulin was okay - it gave me a chance to get used to injecting just a couple of times a day and a chance to start thinking about carbs etc before I went on to basal/bolus - I think I might have freaked if I had been given that straight away - although I was coming from a background of almost complete ignorance!
 

donnellysdogs

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I went to my GP one day and was sent to see the DSN at the hospital the next (due to BGL of 35 and ketones). I was injecting insulin within 10 minutes of being in the door.

I started on a mixed insulin which worked quite well for the first few months, even had to decrease the dose a few times. I think I was in the honeymoon period. It gradually became less effective and I asked to go on to basal/bolus as I wasn't getting control any more. Then I went on a DAFNE course and I've now been passed to get an insulin pump as I still have issues with Dawn Phenomenon.

I thought starting on a mixed insulin was okay - it gave me a chance to get used to injecting just a couple of times a day and a chance to start thinking about carbs etc before I went on to basal/bolus - I think I might have freaked if I had been given that straight away - although I was coming from a background of almost complete ignorance!

Aah but it sounds like you are a T1??

This person is changing over from tablets to insulin and a T2....
 

Daibell

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I would perhaps add that with a very high BMI it will be essential to keep the carbs way down whilst on insulin otherwise control will remain difficult and there could be large blood sugar swings
 

donnellysdogs

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I think the trouble that @Molly56 may find is that the nurse will say carbs at every meal......so how on earth is she going to persuade partner to lower his carbs to lower his BMI?

That's what concerns me especially as the nurse is likely to just put on a fixed qty of insulin which could be too high or too low? If its not enough insulin the DSN is more likely to state more insulin rather than cutting the carbs which would enable a lower BMI to be achieved.
 

Molly56

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I would perhaps add that with a very high BMI it will be essential to keep the carbs way down whilst on insulin otherwise control will remain difficult and there could be large blood sugar swings

I think the trouble that @Molly56 may find is that the nurse will say carbs at every meal......so how on earth is she going to persuade partner to lower his carbs to lower his BMI?

That's what concerns me especially as the nurse is likely to just put on a fixed qty of insulin which could be too high or too low? If its not enough insulin the DSN is more likely to state more insulin rather than cutting the carbs which would enable a lower BMI to be achieved.

@Daibell ....thanks for the advice about the carbs....I am trying to keep the carbs down for him when I am cooking our evening meal but unfortunately there are times when he chooses to eat more carbs than would perhaps be advisable.....whether or not I can influence his choice of food by suggesting alternatives is a difficult one...I have tried, believe me, but so far it has failed....

He does have a habit of either having a bowl of porridge or some bread during the evening.....it is a definite habit and despite my suggesting he has something different, one that he persists with.....this is one point I have made a note to mention at the appointment as I need to ask how this will fit in with any insulin regime that they put him on....also that he skips breakfast / goes out for lunch as this will also influence how the medication will work....

In preparation for the appointment he has been keeping some blood glucose readings for the past couple of weeks.....the morning reading (when he gets up/ before eating) is generally around the 11.5 mark with readings taken before our evening meal around the 16.5 mark.....

....as mentioned before he is a creature of habit and I was just wondering how these readings can differ by that amount when all he has had to eat in the interim period is two eggs on two slices of toast and a latte (this is his usual lunch / brunch that he has a t a local supermarket cafe, probably about midday)......surely this 5 point increase cannot be down to the food he ate at midday some 6 hours before the next reading.....am guessing there is something else going on here to get them to that level BEFORE our evening meal...

Regarding his BMI and his eating habits I would not say that he is eating to excess .....some people may be of the impression that he is constantly eating throughout the day but that is not the case as far as I can see.....he no longer eats cakes or biscuits as we don't buy these as a general rule...his weakness is bread but am trying to cut that back where possible and I noticed he is choosing the one with the lowest carbs per slice...

@donnellysdogs .....I note your point about the advice that will probably come from the diabetic team but hope that somehow I can work with them to make this work.....have not met them yet but hopefully can use the knowledge and advice gained here to come up with a sensible plan of action...will have to make sure that they know how things are in reality as his patterns of sleeping / eating etc do not follow the conventional patterns of most people....

Probably the biggest issue relating to his BMI and blood sugar levels is his lack of exercise or activity......basically I would describe him as being inactive as the majority of his day is spent either lying in bed or just sat in a chair...despite both myself and other people telling him that exercise / activity / movement is important this is still a concept that he has not grasped......just feel that I am on a losing battle here....

Will have to wait and see what the next couple of weeks bring....
 

phoenix

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)......surely this 5 point increase cannot be down to the food he ate at midday some 6 hours before the next reading.....am guessing there is something else going on here to get them to that level BEFORE our evening meal
...
It comes from liver . In the body there are two hormones which act to keep glucose level; insulin and glucagon. Glucagon is the hormone that tells the liver to release glucose. (this either comes from stores or is made from protein in the liver). All the fasting high blood glucose in diabetes is caused by this. In type two. in particular, the pancreas may produce very much more glucagon than it should do. (some researchers in fact think that this is the main problem)

(NICE says" Begin with human NPH insulin injected at bed-time or twice daily according to need" but to consider using once a day lantus or levmir in certain cases)

NPH is a medium term insulin, lantus and levemir are long term insulins.They are used as basal insulins .
A basal insulin is an insulin used to counter the release from the liver that I mentioned. Some people with T2 just use a basal insulin, leaving their own insulin to deal with meal time glucose.
, NPH which is what seems to be the favourite with the NHS at the moment (it's cheaper for a start) lasts for about 16 hours and has a peak (ie it rises to become more active and then falls off ) Taking it twice a day results in some overlap which could be timed so that the peaks occur at times when insulin needs are highest.
Lantus and Levimir are flatter.
Graph comes from Lantus so may be a bit exaggerated but it shows the difference
lantus v NPH.PNG


There are other types of insulins that are either short acting or rapid acting. These are used in addition to a basal to cope with glucose from food sources

Many type 2s are put on an insulin regime where the basal (to take care of the glucose from the liver) and some short or rapid action for when needs are greater (mealtimes) are pre mixed together by the manufacturer
(NICE says Consider twice-daily pre-mixed (biphasic) human insulin (particularly if HbA1c ≥ 9.0%). A once-daily regimen may be an option.
Consider pre-mixed preparations that include short-acting insulin analogues, rather than pre-mixed preparations that include short-acting human insulin preparations, if:
a person prefers injecting insulin immediately before a meal,
or hypoglycaemia is a problem,
or blood glucose levels rise markedly after meals)


.This article explains about pre mixed insulin used twice a day.
http://dtc.ucsf.edu/types-of-diabet...nsulin-rx/types-of-insulin/pre-mixed-insulin/
Most people I have seen on here use a twice daily regime as shown but the NICE document does mention using mixed insulin just once a day)
(and some people on here have mentioned using it three times a day)

The big problem for your husband is that it needs to be used with a consistent meal pattern. You can't just take it and not eat when the level of insulin is high as you will have a hypo. It also requires a consistent amount of carbohydrates, too many and levels will rise, but too few can also result in a hypos.
You can't decide on one day to eat a lot more and another less because it isn't that easy to adjust the dose. This is because the insulin is already mixed (take more and you will be taking more of the long term as well as the mealtime insulin.Take less and there will be less basal insulin so levels may rise higher in between meals.
At the end of the day, for these insulins to work well he is going to have to become more willing to test and to adopt a more consistent lifestyle

From what I have read, the least likely possibility is to use two separate insulins (this comes last in the NICE options)
"Monitor a person on a basal insulin regimen (NPH insulin or a long-acting insulin analogue [insulin detemir, insulin glargine]) for the need for short-acting insulin before meals (or a pre-mixed insulin preparation). [new 2009]
Monitor a person who is using pre-mixed insulin once or twice daily for the need for a further injection of short-acting insulin before meals or for a change to a regimen of mealtime plus basal insulin, based on NPH insulin or long-acting insulin analogues (insulin detemir, insulin glargine), if blood glucose control remains inadequate. [new 2009]"
 
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donnellysdogs

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I think that as OH gets up late he will probably be having dawn phenomenon kicking in.. This is just our bodies reacting to getting up and doesn't necessarily mean it only happens at dawn. Then he goes to have his eats and latte which will increase it more. Which is actually two things that would be raising bloods. If he testing teatime.. He would probably find that if he was to test 2 hours after his eating and the latte that he would be even higher and that by teatime he had started to drop to 16ish.

If he not going to test regularly Molly you are never going to find out what is happening. I think you will be up against it with NHS as well for testing...as their advice can still be backward.they, I hope will emphasise his need to test prior to getting behind a steering wheel.
The NHS are slow in telling people to test pre meal and after meals etc. so, if he only listens to the NHS-I doubt if personally if he will actually get to normalised blood levels.

This forum and the actively aware diabetics here are the only ones really that actively state to "eat to your meter".....NHS don't. They are still unlikely to supply your OH with enough strips to really test properly.

These comments sound a bit negative when I've reread them, but I think they are factual as to the state of help that you will get if you are reliant upon the NHS to advise OH.
 

Molly56

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...
It comes from liver . In the body there are two hormones which act to keep glucose level; insulin and glucagon. Glucagon is the hormone that tells the liver to release glucose. (this either comes from stores or is made from protein in the liver). All the fasting high blood glucose in diabetes is caused by this. In type two. in particular, the pancreas may produce very much more glucagon than it should do. (some researchers in fact think that this is the main problem)

(NICE says" Begin with human NPH insulin injected at bed-time or twice daily according to need" but to consider using once a day lantus or levmir in certain cases)

NPH is a medium term insulin, lantus and levemir are long term insulins.They are used as basal insulins .
A basal insulin is an insulin used to counter the release from the liver that I mentioned. Some people with T2 just use a basal insulin, leaving their own insulin to deal with meal time glucose.
, NPH which is what seems to be the favourite with the NHS at the moment (it's cheaper for a start) lasts for about 16 hours and has a peak (ie it rises to become more active and then falls off ) Taking it twice a day results in some overlap which could be timed so that the peaks occur at times when insulin needs are highest.
Lantus and Levimir are flatter.
Graph comes from Lantus so may be a bit exaggerated but it shows the difference
View attachment 11450

There are other types of insulins that are either short acting or rapid acting. These are used in addition to a basal to cope with glucose from food sources

Many type 2s are put on an insulin regime where the basal (to take care of the glucose from the liver) and some short or rapid action for when needs are greater (mealtimes) are pre mixed together by the manufacturer
(NICE says Consider twice-daily pre-mixed (biphasic) human insulin (particularly if HbA1c ≥ 9.0%). A once-daily regimen may be an option.
Consider pre-mixed preparations that include short-acting insulin analogues, rather than pre-mixed preparations that include short-acting human insulin preparations, if:
a person prefers injecting insulin immediately before a meal,
or hypoglycaemia is a problem,
or blood glucose levels rise markedly after meals)


.This article explains about pre mixed insulin used twice a day.
http://dtc.ucsf.edu/types-of-diabet...nsulin-rx/types-of-insulin/pre-mixed-insulin/
Most people I have seen on here use a twice daily regime as shown but the NICE document does mention using mixed insulin just once a day)
(and some people on here have mentioned using it three times a day)

The big problem for your husband is that it needs to be used with a consistent meal pattern. You can't just take it and not eat when the level of insulin is high as you will have a hypo. It also requires a consistent amount of carbohydrates, too many and levels will rise, but too few can also result in a hypos.
You can't decide on one day to eat a lot more and another less because it isn't that easy to adjust the dose. This is because the insulin is already mixed (take more and you will be taking more of the long term as well as the mealtime insulin.Take less and there will be less basal insulin so levels may rise higher in between meals.
At the end of the day, for these insulins to work well he is going to have to become more willing to test and to adopt a more consistent lifestyle

From what I have read, the least likely possibility is to use two separate insulins (this comes last in the NICE options)
"Monitor a person on a basal insulin regimen (NPH insulin or a long-acting insulin analogue [insulin detemir, insulin glargine]) for the need for short-acting insulin before meals (or a pre-mixed insulin preparation). [new 2009]
Monitor a person who is using pre-mixed insulin once or twice daily for the need for a further injection of short-acting insulin before meals or for a change to a regimen of mealtime plus basal insulin, based on NPH insulin or long-acting insulin analogues (insulin detemir, insulin glargine), if blood glucose control remains inadequate. [new 2009]"


@phoenix .....thanks for this info ....it has helped to understand what has initially been prescribed and what may be the next step...

It was decided that he should start on Humulin 1 (an NPH insulin) and that this should be taken just once a day......based on his routine and eating habits (he skips breakfast) he has been advised to take this when he gets up in the morning with his other medications.....this confuses me slightly as everywhere I have read about Humulin 1 suggests that it is taken at bedtime.....am not sure what difference this makes but guess only time will tell if it does the job...

.obviously the peak at which it will be effective will be different to if it was taken at bedtime and he was asleep and the timing of any potential lows will be different....hypos are naturally a concern (at the moment he doesn't think he will have a hypo!).....with the current regime the peak of insulin will be reached sometime in the afternoon / around time of evening meal...... whereas if taken at bedtime this peak would occur whilst he was asleep and some 4 to 5 hours before he will next eat....am guessing this is why the timing suggested was made rather than the conventional timing ....

I fully expect that this will change and the letter from the nurse to the GP did indicate this....not sure if he realises this or will be happy when insulin doses are increased...will cross that bridge when we get there.....but at least we have now reached this starting point...will see what happens over the coming days and weeks .....