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I've got to hold my hands up in the air now because just lately I've been emailing or phoning my DSN far too often. Maybe 3 or 4 times a day sometimes. Sometimes this is to ask how she thinks my levels are. Sometimes because maybe we mis understand each other.
Part of the email from yesterday "Looks like the hypo occurrence is still work in progress .
I can't really advise you on all your monitoring , all the time"
I can’t remember the last time that I contacted my DSN. They are very busy and as you have lived with diabetes for a long time then you know how to deal with it better than she does. I think you need to trust your Bolus calculator and focus on the ground rules that you already know. Diabetes is never perfect but if you focus on it too much it will take over your life and life is too short for that.
Rare I contact mine in between Clinic appts. Hence when I do need to do, so they are more than willing to help.
My own job involved customer service - and some clients were a right PITA but most of em - esp those running huge global plcs! - were a pleasure to speak to. They did not expect me to sit there and do their jobs with them - but only to sort out whatever probs did happen, pdq.
If I thought mine would answer me then I probably would contact them more. I had thyroid blood tests done over 3 months ago that I havnt managed to get the results from to this day, they gave me a mobile number which when I call says number not in use. They have never answered one email and my calls to them go to an answer machine and by the time they call me back… which they they rarely do, I’ve forgotten what I wanted lol. There is one fantastic DN who calls me every 2 months so when she does I have all my questions ready. Apart from that I’m pretty much on my own which has made me learn a lot… fast. I think there are not enough hours in the day for them at the minute xx
The first few months after diagnosis it was fairly regularly (at least once a week at first) but it dwindled rapidly. Then about a year after diagnosis two things happened: 1. I finally let the grief out that I had been burying all that time, was a total basket case in floods of tears all the time for about 3 weeks but then after that suddenly felt much stronger and able to deal with things without having to check all the time. 2. I wanted to set up a separate basal pattern for non-school days, asked the DSN about it and she said “you don’t need me for that do you, you are well familiar with how the pump works, just set it up yourself” 😱😱 (actually setting it up was easy enough, it was what level to set it at and ongoing adjustments that I didn’t think I could do alone). So that was terrifying, but if she thought I was capable then maybe I am, so I had a go (remembering that if it all goes wrong just switch back to what we are already doing and then get in touch with DSN) and it actually worked rather well and I’ve never looked back. So now we have check ups at the hospital every 3 months with a consultant and whichever DSN is available that day, so often don’t see ours for many months at a time, and hardly ever have to contact her in between. She’s all for us doing as much as possible ourselves and says things like “just do whatever works” and “if you keep going high and it won’t come down then just keep gradually increasing doses/basal until it does come down!” Etc etc. We were quite honoured last year when we saw her twice within a month, once to set up the new pump and then to get the sensors integrated with it
Never. I had a few calls from the DSN at the start for about a month. After that (almost a year now) nothing. I have called 111 once near the start as the insulin was making my blood glucose drop really low. They advised me that I could stop taking it quite safely, so I did. Not sure, even now, if it was really safe to do so.
Thank you so much for all your replies. I feel really guilty now. In the past I've always left it 2 or 3 months to contact a DSN - I've had a few due to either moving house or DSNs which have left.
I do hope I can continue with showing my BG results on here to see what other members think and to help me with any patterns which I'm hopless at spotting.
I'm off out tonight for a couple of gin & diet cokes with no ice and in a straight glass not one of those huge goldfish bowl things lol. I'm out with hubby and son.
I mentioned on my Papa John's Pizza - chicken poppers nutritional information thread that I'm having them tonight and because I don't know how many I will eat I will bolus for them after eating obviously keeping track of how many I have - it's 3g of carbs per popper.
Less than once a year, I have an appointment every 6 months (though less frequent since covid), other than that I’d say I probably contact them maybe once every 2-3 years when something happens that sorting by myself doesn’t work? You do seem to contact your DSN way more than I could imagine is appropriate but I’d never point that out. They aren’t there to manage your diabetes for you.
Just once - this week. She asked me during my review in July to update her on the side effects I was experiencing with Metformin. Otherwise the surgery contacts me to arrange the HbA1c test quarterly (apart from 1st lockdown). I get all the help I feel I need from this Forum
I spent the first 8 years of my diabetic journey being treated as a T2 although I was on insulin from the beginning. You get little, if any, support from a DSN if you are T2, so I quickly learned to manage for myself. After the relevant tests I was rediagnosed as T1 but I had to fight for those tests, I had to fight for a pump and frankly the DSN who phones me every 6 months is not a lot of help as she has not been pump trained. Honestly it is a condition that is very different for every person and you do have to become self reliant.
@mum2westiesGill I was surprised that you did not use your time on the Libre to see your own patterns and learn how to adjust your own insulins. However perhaps with the support of this forum you can become more confident - having said that, we are not you... and you need to learn from past experience and make your decisions according to that.
I've still got a libre 2 meter - all I need to do is order the sensors online. I've done the training thing but clearly nothing sank in. With my finger pricking I do waking, meal to meal and bedtime testing.
Not often, once this year, but very quickly if I have a problem I can't solve. The hospital diabetic clinic gave a telephone number for the nurses, and one of them usually answers within a minute or so. I have the e-mail of my designated DSN and she is excellent, not afraid to say she doesn't know the answer. The consultant also gave me her e-mail, but I only use it if she has asked me to report back on something, as I know she is under a lot of pressure at the present time.
I've still got a libre 2 meter - all I need to do is order the sensors online. I've done the training thing but clearly nothing sank in. With my finger pricking I do waking, meal to meal and bedtime testing.
Gill, try doing the training again. Sometimes it takes a while to get it ingrained. No point paying for the things if you don't use them to their full potential.
Clearly you stress a lot about finger prick readings. You really do need to try not to. We all go up and down, even non-diabetics. However, if you are only testing without using the results it's fairly pointless. From what I have seen from your daily numbers you are doing well. STOP stressing!
Once every three months over the last year and then it was only a 5 min conversation usually, thiugh the last one was about 10 min. Now, i can't speak to the DSN as they've referred me back to the GP surgery. I'm on my own unless there is a problem. Then i need to ask the GP to refer me back again.
I haven’t spoken to my DSN since I last went for my hospital appointment and that was more than two years ago. I rarely contact them or speak outside of appointment times unless I have a big problem I can’t sort.
Some people above seem to be talking about nurses at their GPs who ‘have an interest in diabetes’. DSN= Diabetes Specialist Nurse and are usually hospital-based, highly trained and very busy.
before anyone has a go at me for what I'm about to say this is just personally how I would feel, BUT I'd feel embarrassed to be contacting them that often, 1 - it's my condition, 2 - I'm an adult and it's my responsibility to manage my condition, 3 - there are still people being diagnosed that could need the time to get the basics but can't get it, 4 - they are even more under pressure with the current situation, although we and they are there to give advice etc its seeming more and more like your wanting others to do the work xx
@mum2westiesGill You say you’ve been doing this “just lately” - how were things before? Has anything changed? Are you under stress unrelated to your diabetes? If you managed ok before, you can manage by yourself again 🙂
The DSNs are really busy and work extremely hard - not just in the clinics but in the hospital wards too. If you find you’ve got in the habit of emailing them and are finding it hard to stop, if you think about others who might need their help eg someone newly diagnosed, a pregnant women, someone with another serious medical condition in addition to diabetes, that might help you reduce your contact if you can think about the potential other people waiting for help.
The basic answer to when you should contact them is if you have a problem that you’ve been unable to solve yourself. I would guess most people who’ve been diagnosed a while only contact them every few months or less frequently.
before anyone has a go at me for what I'm about to say this is just personally how I would feel, BUT I'd feel embarrassed to be contacting them that often, 1 - it's my condition, 2 - I'm an adult and it's my responsibility to manage my condition, 3 - there are still people being diagnosed that could need the time to get the basics but can't get it, 4 - they are even more under pressure with the current situation, although we and they are there to give advice etc its seeming more and more like your wanting others to do the work xx
