# How can I be most useful?!



## FloPo (Feb 26, 2016)

Evening!
I hope it's ok for me to post here, please say if not...
I'm a practice nurse and am going to be doing insulin initiations soon. I'm mindful of overwhelming my patients in the early days and would be grateful to know, from a patient's perspective, what you wish you'd been told at the outset?
Thanks ever so


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## Nick Jones (Feb 26, 2016)

Not seen anyone yet apart from initial diagnosis but i would say any help or advice from a professional would be most appreciated.


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## Northerner (Feb 26, 2016)

FloPo said:


> Evening!
> I hope it's ok for me to post here, please say if not...
> I'm a practice nurse and am going to be doing insulin initiations soon. I'm mindful of overwhelming my patients in the early days and would be grateful to know, from a patient's perspective, what you wish you'd been told at the outset?
> Thanks ever so


Hi FloPo, welcome to the forum  Yes, of course it's OK for you to post here, it's very thoughtful of you 

I imagine that the majority of your patients will be Type 2, or will you also be dealing with Type 1s? As a Type 1 my introduction to insulin was very abrupt - a short explanation of when and what to take and how to operate the pens, then I was on my own  I had had no 'build up' to using insulin though, which is not usually the case for a Type 2 who may have been on oral medication for years.

I get the impression from reading the experiences of some Type 2 people on here that they often see insulin as some sort of failure, and that they are being punished somehow, or have been 'threatened' with insulin in the past if they aren't able to improve. I think it's important to reassure people that, if they have been struggling on oral medication, then they should find their control improves considerably once their insulin doses have been established. It would be good to explain that the needles are nothing like the type of hypodermics most people imagine, and showing them how tiny and fine they are should help reduce fears of injecting. You should also explain about false hypos, where a person might get hypo symptoms due to much reduced BG levels, but not actually low enough to be a true hypo. An explanation of some of the likely symptoms would be good too - I think the majority of things I read about here are based on a fear of the unknown, so assuaging those fears at the outset should help ease the transition. Also, many people fear that insulin 'causes' weight gain, which is not inevitable.

Hopefully, some of our members will be along to share their experiences!


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## Mini-Vicki (Feb 26, 2016)

I think it's a brilliant idea, posting on here to get a diabetics perspective!
When I was initially diagnosed, I wasn't on insulin, but the thing that was missing from the nurse, and the doctor, was a lack of empathy. I suddenly had this huge diagnosis, I was in my early 20s thinking I was healthy, never really giving a thought to my long term health really, then suddenly I had this life changing thing to deal with! I understand that a doctor or nurse sees 1000s of diabetes cases a year, but I think it's can be forgotten that each case is an individual. I was made to feel incredibly guilty at my check ups with the nurse, my levels were worsening although I was trying everything, and taking all the oral meds I was told to. The guilt just led to me staying away from the surgery as much as possible. 
When I was moved onto insulin my DSN was a completely different kettle of fish, her beside manner was and is amazing. She took the time to listen to all my fears about starting on insulin, the first appointment was about the insulin, and the second was carb counting, so it wasn't too much at once. I was absolutely terrified of having hypos, so I think she started me on much lower doses than she thought I needed, so I could get used to injecting myself and get over my fear of hypos, and she talked in depth about how to recognise, and treat a hypo.
I'm not sure if I've been much helped, I've waffled on as I often do 
Lots of helpful types on here! Good luck!


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## FloPo (Feb 26, 2016)

Hi and thanks for the replies, all really valuable insights, I am taking notes!
At the moment I do the reviews for all our diabetics and will be initiating both T1 & T2s as and when needed. 
Thanks again!


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## Robin (Feb 26, 2016)

The best thing my DSN did, when I arrived for my appointment, was to say, 'come on, let's get it over with' and produced an empty insulin pen, primed with a needle!  She had me stick it into a piece of leather to see what it felt like, then stuck one into herself, then got me to stick one into my thigh, before I'd got time to think. Then she did all the explanations of doses and ratios, etc, knowing I would be paying attention, and not thinking about how awful it was going to be when we got to the needle bit.


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## AlisonM (Feb 26, 2016)

My experience was a bit like Mini-Vicki, I tried my best on the T2 pills but to no avail and was made to feel like a failure for it. My introduction to insulin was all of five minutes with a rubber penguin and one go at injecting it. Then I was handed a pen and a prescription and ushered out the door. It's lucky needles don't bother me but, if it wasn't for this place, I'd have had no clue what I was doing. I realise you will likely have a lot of folk to see and not much time, but please try not to make them feel you want them out the door. Mostly they're going to be scared and in need of reassurance. Also, please make sure they know who to contact if they have questions, that's a key bit of information that will go a long way to helping them feel less isolated.


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## Bloden (Feb 27, 2016)

Hi there, FloPo and welcome. If I felt my endo'd listen to me, I'd remind her that I'm a person (not an illness or a number) and, immediately after diagnosis, an emotional wreck!  That's what I feel has been lacking right from the start: sympathy, patience, and listening to me. Maybe it's a Spanish thing (I live in Spain) but when someone's sitting in front of you crying, don't ignore them until they stop! (You probably already know that tho).

Good luck.


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## Adrasteia (Feb 27, 2016)

I don't know if you'll be dealing with anyone who has to inject a loved one - a carer perhaps, if not parents? - but injecting someone else is a very different experience to injecting yourself. My mum is a nurse but, despite having done more injections than you could count, really struggles to inject my son! 
Our DSN let us practice on her which was really helpful. 

And i really think the mental impact of diagnosis is underappreciated - the guilt and the sense of loss are hard, t1 or 2. I had a t2 sponsor me in swim22 because he was "part of the problem". People shouldn't feel like that, and i imagine people who are left with that impression can't be as motivated to look after themselves.

So if you can do anything to counteract the negativity that would be very welcome!


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## Lynn Davies (Feb 27, 2016)

Make sure no one walks out of your clinic feeling 'Your fat - its your own fault'!


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## pippaandben (Feb 27, 2016)

Firstly thank you for asking our opinion. I am Type 2 -probably LADA as late 60s on diagnosis on healthy diet and not obese.

The one thing I craved was information, information and more information!! I can remember visiting every pharmacy in town for any leaflets. I was told I had diabetes, given a prescription and appt for 4 weeks time and given a diet sheet - the usual make sure 1/3 meal is made of carbs! My first HbA1c test was 101 but this meant nothing to me. I was given a meter and strips so luckier than most it would seem. 

When after 18 months I had exhausted all combination of meds I was put on insulin to start on a Friday evening and knowing the nurse was on holiday for 2 weeks from the following Monday. Just ring 111 if any problems. No-one told me that insulin had an immediate affect resulting in a panic call to 111 when 2 hours after my meal my blood sugar was under 10 for the first time ever and I was petrified it would carry on decreasing and was too scared to go to bed. It took 3 hours for a Dr to ring me back but at least he understood my worries and took the time to explain exactly HOW insulin works. 

So I would say drip feed information as I now know too much too soon is rather overwhelming BUT not at 3 monthly intervals. Weekly appt for first month if at all possible with more info at each stage - perhaps with a printed sheet to reinforce each meeting as they are bound to forget the very point that you know is the most important one, but they don't.. Also give the website addresses for this forum and Diabetes UK so they can search on good UK sites and not get sidetracked onto some of the weirder sites that are around. 

Ask them to write down all questions as they think of them no matter how trivial - if they think of it then it is not trivial to them. If they have partner possibly have a meeting with them as well - I found out after 2 years that the one thing that had petrified my husband was that he would wake up to find me in a coma and not know what to do for the best. This even though I had explained where my hypo treatments were and had gel in case of an emergency bought by myself and never mentioned by surgery.

Hope this helps


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## stephknits (Feb 27, 2016)

I think it is important to have a conversation together about what type of insulin regime to go on.  Explain the options - mixed vs MDI and discuss the patients lifestyle and eating habits.  Some may feel unable to cope with the idea of carb counting, others can't live with the rigid nature of mixed insulin and want tighter control.  Lots of people on here weren't given a choice,let alone an informed one,  which is wrong when it is them that has to live with that choice. And thanks very much for asking!


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## AndBreathe (Feb 27, 2016)

FloPo said:


> Evening!
> I hope it's ok for me to post here, please say if not...
> I'm a practice nurse and am going to be doing insulin initiations soon. I'm mindful of overwhelming my patients in the early days and would be grateful to know, from a patient's perspective, what you wish you'd been told at the outset?
> Thanks ever so



FloPo, thankfully, I haven't had to resort to meds yet for my diabetes, and I am hoping insulin will be a loooong way away for me, if ever, but who knows how our bodies will cope over time and decrepitude.

But, one thing I would say overwhelmingly is that your attitude will be at least as important as almost anything you say to people, either at diagnosis, or along the way.  Obviously, there is some factual stuff that has to be got across, but that can be worked on.

When I was diagnosed, I can still here the "lovely" nurse telling me I had a progressive disease and they'd try to keep me off insulin as long as possible.  What sort of motivation does that give most people?  Ok, in my mind, I was thinking, "not on my flippin' planet", but then again, I'm a bold thinker and a sometimes even more bold doer.

At diagnosis, and along the way, I believe patients need to be given hope.  Not necessarily hope of a life of fluffy bunnies and the happy ever after, but hope of something better than their starting point - provided they do their bit to join in the efforts.

I appreciate the position for T1s is wholly different to T2s, but for a T2, the most important things they can do at the outset are look carefully at their diet, and regular testing, for immediate feedback on the diet they adopt.  I accept that the NHS is unable to support wholesale testing for everyone, but T2s (or anyone with a diagnosis for that matter) should be given the choice to sponsor themselves, rather than be told it is unnecessary. 

Anyway, I'll step off my predictable soapbox for now and wish you well in your new endeavours.  That you want to get it right, and are canvassing for feedback is a massive step in the right direction. Thank you.


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## SB2015 (Feb 27, 2016)

Thank you FloPo for posting on here.  I was diagnosed in my 50s with Type 1 at my GP and then went straight into hospital where a DSN did the initial introduction to injecting.  It was very matter of act and this is how you dial up and prime and then inject.  Now your turn.  Suited me.  I was then off home and on my own with loads of questions piling up about adjusting doses.  I was back in hospital after a sever hypo the next day.  Telling you about hypos is very different from experiencing one.  I didn't recognise it for what it was until too late.  It would have been useful to have been encouraged to test whenever I felt weird. 

When initiating on insulin for T1 I would suggest another appointment very soon after and encouraging them to keep records of BG, what they eat as well as what they inject.  Also I would have liked to know that it will be all over the place at the start (due to the honeymoon) so not to worry if BG are not all on target.  The first week is simply collecting data in order to adjust doses.  A it is such a rapid process at the start of T1 I was glad that I was not told all about the long term implications.  It is enough to simply deal with testing and injecting at that stage.

Enough.  But I am so pleased that you have posted on here FloPo


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## HOBIE (Feb 27, 2016)

FloPo said:


> Evening!
> I hope it's ok for me to post here, please say if not...
> I'm a practice nurse and am going to be doing insulin initiations soon. I'm mindful of overwhelming my patients in the early days and would be grateful to know, from a patient's perspective, what you wish you'd been told at the outset?
> Thanks ever so


Welcome to the forum Flopo. Well done for being so interested in helping others !  I was at a Duk kids event a couple of years ago & this 14yr old T1 had never self injected.  Sorted in a couple of hours. Changed her life & her mothers


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## trophywench (Feb 28, 2016)

First thing you need to do, Flo - to initiate insulin for T1s - is spend at least a day as a T1 diabetic - doing all the jabs with am empty pen OR get cartridges of sterile water) so that you understand properly about the trepidation one feels at first, when you realise for the first time that it's down to you ALONE (and the patient has had no medical training so you are well in front of any of them)  to inject yourself with a substance which you depend on for your life - but at the same time can kill you quite easily if you happen to get it wrong! 

Don't forget that the first choice of insulins for a newly diagnosed T1 according to NICE Guidelines is now 2 x Levemir daily plus however many doses of fast acting (Novorapid, Humolog or Apidra) they happen to need to cover whatever carbs they eat at any time.  Presumably you are already expert at titration of basal insulin for a Newbie and also Carb Counting and Dose Adjustment for the bolus - otherwise you wouldn't be able to do the job of initiation.  You also need to be familiar with the best finger prickers (the Roche Fastclix is the kindest one without a doubt) and you'll need a supply of those and the lancet cartridges and Glucometers and strips immediately to hand, to give them instantly along with the pens and a supply of needles (enough for several days AT LEAST until; they can get the Scrip filled), together with blood Ketone meters and strips - urine testing for T1's are NBG - because DKA is to be avoided at all costs.

I am amazed actually that a Practice Nurse has been sufficiently trained to do the job.  Usually they get a day if that !!  Lucky you, to have been able to work in a clinic and been able to get the equivalent of a hospital DSN's degree course!

Presumably you will only be covering Adults since it's essential that children are seen by the appropriate team who will get involved with the Care Planning at schools etc.

It may not be quite so complex with T2s some way down the line - I couldn't comment since I know not of how T2s feel - but it absolutely knocks you for six being diagnosed with T1 as an adult (I was 22) and can take you months at least - even years - to stop panicking and/or bursting into tears suddenly at the most inconvenient times, it's a grieving process we have to go through and it takes TIME to come out the other side of that.  So - patience and empathy. 

Do you mind if I ask you how long the practice is allowing for such appointments?  (I was a hospital in-patient - the absolute norm way back when) so my initiation took 10 days - and I was still bloody terrified on Day 11 back at home in my own house - on my own LOL)

The most important thing though is to wish you luck - and I do - but by gum, you'll need it.


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## ukjohn (Feb 28, 2016)

trophywench said:


> It may not be quite so complex with T2s some way down the line - I couldn't comment since I know not of how T2s feel - but it absolutely knocks you for six being diagnosed with T1 as an adult (I was 22) and can take you months at least - even years - to stop panicking and/or bursting into tears suddenly at the most inconvenient times, it's a grieving process we have to go through and it takes TIME to come out the other side of that. So - patience and empathy.



Trophy, it can be just as complex with T2. When diagnosed I was put on insulin from day one, and have now been diabetic for 11 years, from that first day I was given my needles etc for my Novorapid and Levimer by the nurse and shown how to inject. Since that day I have never seen or spoken to a DSN or been sent on a course which includes the use of insulin, being T2 it is assumed you are not on insulin, the only nurse I see for my check up is at my health centre she has been on a half day course on diabetes and can't answer any question I put to her about insulin. I have had to work out for myself what doses of insulin I take by trial and error


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## Austin Mini (Feb 28, 2016)

1987. Hi Flo, I was sent to hospital by my doctor as I was drinking loads, I expected I was diabetic. Anyway at hospital one insulin inj and within fifteen mins completely better and felt fine first time for weeks. I was put on pills and sent home after two days with BM test kit and a load of notes on what to do. Long story short within three weeks back to drinking and feeling tired. I rang up the diabetic nurse who came to my home the next day and gave me Actrapid and Monotard plus a packet of needles, made me do an injection then left saying I might get a hypo just be carefull ohh and do six actrapid and ten monotard twice a day before meals. I went to doctors and told him who wrote me a prescription for all the stuff I needed. So I had very little instruction but it all turned out fine. The DSNs to me know farr more than the docs will ever know about diabeties as my little tale shows. Hope this helps. AM.


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## trophywench (Feb 28, 2016)

Well John I'm sure you know what I am going to say? - that is simply NOT good enough - and you should have made a list of all your questions, handed it to her and when she said she couldn't answer them - demand to see someone who can, because you need to know, now, please!

Our joint aim - both here on the interwebnet thingy and in Real Life - is to ENSURE that NO diabetic is treated like that ever again.

Have you ever actually been tested to make certain you ARE actually T2 ? - Patti Evans was diagnosed as a mega skinny - completely fit otherwise - 56 yo.  T2 diagnosis, Metfartin and carbs between carbs at every meal - which was completely alien to her as she'd hardly eaten em beforehand in terms of stodge.  Anyway in the finish she too was on insulin only - but it was 11 years before she got rediagnosed T1 - when they agreed to do a C-peptide (since she was seeing an Endo about her thyroid anyway) - and she now has a pump !


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## SB2015 (Feb 28, 2016)

Hi Flo

It takes a lot of work at the start to adjust doses of both basal and bolus, and to work out which is the one that you need to change.  At the start I was in regular email contact with DSN needing advice about this. There are also so many factors  to take account of that can determine the correct dose at any one meal: carbs eaten, current BG, planned activities done or about to do, the weather, changes in medication.  The DSNs are the fount of knowledge as they draw on a wide experience of helping so many T1s.

I am impressed that your practice have provided you with sufficient training to manage this.  At our practice with only three T1s I doubt that they would choose to invest in the training needed, which would need to include a good knowledge of carb counting and how to adjust doses in the light of other foods included in the meal.

All the best Flo


PS Eight years in and I still have the odd day when I simply sit down and cry!


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## Northerner (Feb 29, 2016)

Just thought of another couple of things! What to do if you miss an injection, and what to do (if on MDI) if you inject basal instead of bolus (or vice versa) 

You might also find it helpful to provide your patients with the relevant 'sick day rules':

Type 1 Sick Day Rules (UCLH for Type 1 on MDI)

Type 2 Sick Day Rules (Australian document, but good)

Your CCG/Surgery may have their own versions.


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## Barbie1 (Feb 29, 2016)

Although it was back in 1967 and the halcyon days of one injection a day, the most useful thing I remember is they made me have a hypo, before explaining what it was and what to do.
I had spent nearly 3 weeks in the children's ward and I was relatively well again (and injecting myself after practising on an orange), and it was a sunny day so they let us all go out to play on the grass outside (if we could, obviously!)
Naturally enough after 3 weeks of doing nothing, a few dashes about the grass and I came over all funny - such a weird feeling that I went indoors and told the nurse.
I was immediately sat down on my bed with a glass of milk and sugar and the doctor came along and explained exactly what had happened and why, and he told me that the symptoms I had displayed were typical but not necessarily the only ones etc etc, and told me how to deal with it.

I really do believe that is essential for anyone new to the possibility of having hypos and I am eternally grateful to that team for making sure it was not something to be frightened of, that it was something I could cope with.


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## Northerner (Feb 29, 2016)

It's a very good point @Barbie1  - I know that, for many people, the fear of hypos can be so great that it leads them to leaving levels high most of the time in order to avoid them  I actually had my first hypo in hospital when the night nurse forgot to do my two hour check - I went down to 2.1 mmol/l and the nurse panicked a bit as she clearly didn't really know what to do and expected me to know! She brought me some tea with a cup of sugar - since I didn't know how much I needed I put about half the cup in the tea (way too much! ). I went up to about 30 mmol/l!
People need to know what to look out for, to test if they feel the slightest bit 'odd', and treat accordingly - and that mostly they are mild and you don't instantly lose control of your faculties!


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## trophywench (Feb 29, 2016)

LOL at Barbie - in hospital I used to go hypo mid afternoon most days (whether real of false I have no idea, since THEY were testing my pee morning and night, not me) so when I next saw a doc I mentioned it and he said 'Ask them to get you a snack tomorrow when they bring the tea round' - so I did, one of the nurses asked an auxiliary to go and get me cheese and biscuits from the childrens ward, which she brought to me handed me the plate then stuck her face in mine and snarled 'I hope you know, Madam - I've had to go ALL the way down to the childrens ward to get this - so I HOPE you're satisfied!' - and flounced off.   I was deeply shocked and cried.

(Of course today - I'd leap to my feet, shove her out of the way and then stomp into the sister's office to complain - but I wasn't used to having anyone speak to me like that (you know. since I had been married - I mean growing up, yes I was used to being spoken to like a toddler when I'd transgressed, of course! - but if my husband had done that he wouldn't have been my husband in the first place and if anyone at work had tried it I wouldn't have been working there much longer!)

I never asked again.  Too scared.

Think they were most likely 'false' ones though TBH.  Was ages before I had another - still pee testing - but remembered what it felt like so was able to sort it without too much of a prob.  Thing was though it was all guess cos you had absolutely no way of knowing by how much you had overtreated it .....


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## FloPo (Feb 29, 2016)

Thanks all for such helpful responses, and for allowing me to post here in the first place!


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## AlisonM (Feb 29, 2016)

FloPo said:


> Thanks all for such helpful responses, and for allowing me to post here in the first place!


You're welcome. This forum isn't just for people living with diabetes, but for their carers too and I suppose that includes professional carers. We would like to see more medical folk joining so they can see what living with this disease is like from day to day and what we've found works for us. There's a disconnect, a sort of wall between 'us' and 'them' that can lead to great frustration and distress. Speaking personally, I'd like to demolish it.


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## FloPo (Feb 29, 2016)

AlisonM said:


> You're welcome. This forum isn't just for people living with diabetes, but for their carers too and I suppose that includes professional carers. We would like to see more medical folk joining so they can see what living with this disease is like from day to day and what we've found works for us. There's a disconnect, a sort of wall between 'us' and 'them' that can lead to great frustration and distress. Speaking personally, I'd like to demolish it.


Alison I guess that's why I came here, to get it from the experts! Maybe there's room here for more of us nurses in the future to come together and chat and learn from you lovely people?!


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## Northerner (Feb 29, 2016)

FloPo said:


> Alison I guess that's why I came here, to get it from the experts! Maybe there's room here for more of us nurses in the future to come together and chat and learn from you lovely people?!


Nothing but good could come from that


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## FloPo (Feb 29, 2016)

Northerner said:


> Just thought of another couple of things! What to do if you miss an injection, and what to do (if on MDI) if you inject basal instead of bolus (or vice versa)
> 
> You might also find it helpful to provide your patients with the relevant 'sick day rules':
> 
> ...


Hi, thank you, I'll add these to my reading list. I thought this one a good general over view....https://www2.rcn.org.uk/__data/assets/pdf_file/0009/78606/002254.pdf


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## FloPo (Feb 29, 2016)

Northerner said:


> Nothing but good could come from that





Northerner said:


> Nothing but good could come from that


I think I'll have more personal experiences to refer to soon. My dear old dad (aged 65) is borderline, but refuses to make any lifestyle/diet changes until he's 'actually got something to worry about'!!


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## Northerner (Feb 29, 2016)

FloPo said:


> Hi, thank you, I'll add these to my reading list. I thought this one a good general over view....https://www2.rcn.org.uk/__data/assets/pdf_file/0009/78606/002254.pdf


Thanks FloPo, I will have a read through this


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## Northerner (Feb 29, 2016)

FloPo said:


> I think I'll have more personal experiences to refer to soon. My dear old dad (aged 65) is borderline, but refuses to make any lifestyle/diet changes until he's 'actually got something to worry about'!!


Sounds like a challenge for you!


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## trophywench (Mar 1, 2016)

Excuse me FloPo - not to mention the RCN and 'The Great Gadsby' (who we remember round here from when he was a GP at RedRoof surgery in Nuneaton, and have dried the tears of some of his ex patients who he apparently refused to listen to - I myself have been in a church hall meeting with him on the stage on the Panel at a local DUK meeting - when a T2 lady asked him what he thought of Low Carb-ing?  He ignored her.  She asked again - he ignored her.  Someone else asked, using different words - he ignored them too.

Anyway - just wanted to tell YOU that the flat profile shown for the operation of both Lantus and Levemir - is completely incorrect.  Both of them have peaks at different time - see here - ah damn, DSF's Host Server is down again.  I'll post the link tomorrow so you can see what they REALLY do after you inject em!


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## FloPo (Mar 1, 2016)

trophywench said:


> Excuse me FloPo - not to mention the RCN and 'The Great Gadsby' (who we remember round here from when he was a GP at RedRoof surgery in Nuneaton, and have dried the tears of some of his ex patients who he apparently refused to listen to - I myself have been in a church hall meeting with him on the stage on the Panel at a local DUK meeting - when a T2 lady asked him what he thought of Low Carb-ing?  He ignored her.  She asked again - he ignored her.  Someone else asked, using different words - he ignored them too.
> 
> Anyway - just wanted to tell YOU that the flat profile shown for the operation of both Lantus and Levemir - is completely incorrect.  Both of them have peaks at different time - see here - ah damn, DSF's Host Server is down again.  I'll post the link tomorrow so you can see what they REALLY do after you inject em!


Hi Trophywench sorry to confuse, I was aware the profiles shown weren't right, it was the education blurb I was skimming that resource for. Thanks!


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## trophywench (Mar 1, 2016)

Good !  Cos a lot of surgery people still believe the original hype - and for some reason that you can manage with only ONE jab of Levemir a day!  (although I can accept that some T2s may perhaps be able to, since they could have enough endogenous insulin at certain times of day)


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## Caroline (Mar 1, 2016)

An information sheet that can be take away and read might be useful especially if it has links to our forum and organisations like diabetes U K.
I am coming up to my 10 year diaversary and when I was first diagnosed felt overwhelmed and alone, so if there is a local support group that might be helpful to some patients too.


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## TheClockworkDodo (Mar 5, 2016)

Just found this thread and wanted to add my thanks for asking us, Flo - it makes a nice change for a medical professional to want to listen to the people who are living with the illness every day  

My thoughts ...

Do give patients your email address, or a phone number where they can actually reach you (rather than having to go through hoops of explaining things to various other people before they get to you), for non-emergency queries. They are likely to have these, and not know who to ask otherwise.

Do tell them not to google diabetes, or that if they google diabetes they'll find all sorts of things which are inaccurate. Do give them the diabetes.org.uk url.

Do tell them that the dose they're being put on is a best guess, and if they have lots of hypos they should drop the dose first and ask for advice after, not wait until they can get advice.

Do teach them the difference between a hypo and a false hypo.

Do tell them that some people are more sensitive to insulin than others, and there's no “right” or “wrong” dose, just the best dose for each individual.

Do tell them that their bgl dips in the night and then goes up, and that high readings first thing in the morning can be due to too much insulin as well as too little insulin! This is the one thing no-one told me, and I kept thinking I needed more baseline insulin when in fact I needed less.

Do tell them how best to store their insulin, how long it keeps out of the fridge, and what to do with it in hot weather (eg Frio wallet).


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## TheClockworkDodo (Mar 5, 2016)

And a few more ...

Don't say “these are the complications ... “ and tell them horror stories (bearing in mind that to some of us, any medical details are horror stories!)
Do say “here's some info about the complications if you want to read it, but you don't have to”

Don't say “it's a progressive disease”
Do say “there's no reason why someone with diabetes can't live a long and full life, without complications, if they can manage it properly”

If someone is needle-phobic or faints whenever they see a needle ...
Don't say “everyone finds this difficult, but they soon get used to it” or “the needles for diabetes are only tiny”
Do say “you can get covered needles which means you won't see the needle going in” (and provide them with some)

If someone says “I have another medical condition which means I can't ... (exercise, or cut out carbs, or whatever)”
Don't say “Yes, you can” or “You have diabetes now” as if diabetes somehow trumps other conditions. It doesn't.
Do say “OK, why don't you tell me a bit about your other condition, and we'll work out what you _can_ do”

If you are doing check-ups as well as inductions, and someone has a lot of hypos or high readings
Don't say “stop having so many hypos/high readings” (A guilt trip will not help, and it may be completely outside their control, eg caused by changing weather - I need twice as much insulin in the summer as I do in the winter.)
Do say “do you know why you have all those hypos/high readings? Let's work it out together and hopefully we can help you to get your readings more stable”

Above all, as everyone has said, do treat people with diabetes as intelligent human beings. I suspect that the fact that you started this thread means you would do anyway without us needing to tell you. Good luck!


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## Cowboy Bob (Mar 6, 2016)

Just want to say that the best thing my DSN did for me was to give me a bunch of diabetes.org.uk leaflets and told me I ought to check out the forum. 

The downside was that she wasn't explicit enough about the fact that diabetes isn't a black and white disease and that on the basis of a couple of blood tests it's difficult to come up with an effective treatment regime. I now realise that in many ways, as a diabetic, you have to come up with the most effective strategy yourself (with some guidance). At the time I felt a bit let down, but now know that's how it has to be. Communication is the absolute key here. If she'd have communicated better I would have known that this was the right course of action rather than me thinking I was being fobbed off.


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## HOBIE (Mar 6, 2016)

Its not 1 suit fits all. T2 your pancreas works 60- or 80% (who knows). T1 it does not work & some people have different -abbsorbshian rates, different turn over for food etc  (sorry bad spelling )


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## pottersusan (Mar 7, 2016)

Telling people about this forum should be No. 1

And medics looking at you as an individual - there is no 'one size fits all' for diabetes.


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## Copepod (Mar 7, 2016)

Lots of good posts for all healthcare professionals to consider. The Clockwork Dodo's posts numbers 37 and 38 are especially well explained.


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## FloPo (Mar 7, 2016)

TheClockworkDodo said:


> And a few more ...
> 
> Don't say “these are the complications ... “ and tell them horror stories (bearing in mind that to some of us, any medical details are horror stories!)
> Do say “here's some info about the complications if you want to read it, but you don't have to”
> ...


Thank you! Ever thought of nurse training?! Fabulous suggestions/guidance here which I have taken note of


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## FloPo (Mar 7, 2016)

Copepod said:


> Lots of good posts for all healthcare professionals to consider. The Clockwork Dodo's posts numbers 37 and 38 are especially well explained.


I completely agree


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## TheClockworkDodo (Mar 11, 2016)

Thank you both 

Had to laugh at the thought of me nurse training, Flo - I am the person who faints whenever she sees a needle


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