Questions! please help me understand

[plandolfi]

hey I want to ask a few questions for my project at Uni I am doing it on type 1 diabetes and entering a design show run by Philips and need some help?

1– when you go to the GP for your meeting about diabetes what do they ask?

4-on a scale of 1-10 how useful do you find your appoint with the GP(1 real useful 10 not useful at all)

3-on a scale of 1-10 how useful would it be to have a community you could talk to about it (1 real useful 10 not useful at all)

4– would you happily not go to the appointment if you knew your blood sugars and everything was fine and you felt you was handling the problem yourself?

5– if you didn't have the appointment would you still like the safety net of being able to get hold of a diabetic specialist 24/7

6– how do you remember to take your blood sugars?

7– in a week how often do you forget to take blood sugars?

8– in a week how often do you forget to take meds?

9– Would a reward system help and what rewards would interest you? E.g not having to go GP, days out, free stuff, treats from girlfriend/parents or other

10– did you have diabetes in school? If so how did you/the school deal with it?

11– have you ever felt nagged by friends or family into taking meds or doing blood sugars and if so how did it affect you?

if you would like to, private message me as would like to gain access from people with it and also parents with children who have it.

Edited to remove email address

 

[TorqPenderloin]

Sorry to be blunt, but it’s pretty obvious these questions were written by someone who knows nothing about diabetes. Some of the questions are borderline offensive and you’re not going to get much insight the way they’re written.
Either way, I’ll answer them:
1.) I lead the conversation and we have a discussion about whatever I feel like talking about.
2.) 1 I guess? (I’ve never heard of a 1-10 scale where 10 is the worst); You also used number 4 twice to label your questions.
3.) 1….otherwise I probably wouldn’t be on this forum
4.) My blood sugars are fine and I am handling the “problem” (nice word choice) myself….I go to the doctor because I want things to continue to be fine. Seeing the doctor isn’t punishment for me.
5.) I do have 24/7 support should I need it.
6.) I die if I don’t
7.) 0
8.) 0
9.) I already have a reward system in place…..the reward is that I don’t die
10.)No, I was diagnosed with type 1 at 27 years old.
11.)Yes, but I remind myself that my family loves me and they’re only trying to help.

 

[mrspuddleduck]

Hi @plandolfi, you obviously do have some knowledge of diabetes as your profile states you are a type 1. I do however have to agree with @TorqPenderloin, I also find your questions quite random. You havnt identified which type of diabetes you are aiming at and this would surely have a direct relation to your expected outcomes and would be a variable which would be crucial to your research findings!! You have also asked us to participate in your research without an identifiable indication of what's its for (are you studying science, medicine or cookery?) or who you are (undergraduate, postgraduate, PhD??) . To me this is rather unforgivable as I have a right to know how my personal information will be used and who by. As a result I will decline your offer to participate, I wish you well but may I just point out (re question 9) I am not a dog so no, I don't need a bone to make me wag my tail!!! Sue

 

[plandolfi]

Well I am looking at the younger ages allowing them to get in a routine and help them with dealing with type 1 in school and at home. I am looking at making the blood sugar monitor a more interactive system and work as a reminder system. this will link with GPs and parents of the child so they can monitor the child without them feeling nagged and also flag up if there not doing it or blood sugars are to high or to low. and I am a ungraduated at Plymouth Uni doing 3d design

 

[mrspuddleduck]

Thank you @plandolfi Its refreshing to get such a positive answer. As you may have guessed, we can be quite harsh to random requests for information!! Perhaps it would be better if you changed the thread title to reflect its aim at children and parents or restarted in the children and teens section? Good luck, Sue

 

[catherinecherub]

Your profile say that you are a Type1 but that you do not have diabetes?

 

[TorqPenderloin]

I appreciate you sharing the insight about your goals for this information. While your ideas are very good, they’ve unfortunately already been thought of and put on the market.

Some glucometers already work as a reminder system.

My Accu-Chek Aviva Expert allows me to set reminder alerts after high readings, low readings, after meals and I can set alarms at specific times and dates as well. Not only that, but it can be programmed to tell me exactly how much insulin I need to take depending on my blood sugar levels.

As far as “linking” up: Dexcom already offers this function with their CGM (continuous glucose monitor). I have the G5 system which takes readings from a bluetooth sensor attached to my stomach. Those readings can be shared through my iphone with anyone I want (family, doctor, etc).
Unfortunately, it’s a source of nagging rather than an avoidance. Sometimes too much information can be a bad thing and I’ve gotten calls/texts from my worried girlfriend/mother after they saw my blood sugar levels.

 

[plandolfi]

thank you @TorqPenderloin I appreciate that information it is very helpful I understand the tech is out that but its trying to make it child friendly and allow the system to work fully as I understand the accu-chek allows you to do this but its not the most child friendly thing in the world lol but again thank you I didn't know about the dexcom and that is very helpful

 

[plandolfi]

changed I am sorry I didn't check that @catherinecherub

 

[donnellysdogs]

Well I am looking at the younger ages allowing them to get in a routine and help them with dealing with type 1 in school and at home. I am looking at making the blood sugar monitor a more interactive system and work as a reminder system. this will link with GPs and parents of the child so they can monitor the child without them feeling nagged and also flag up if there not doing it or blood sugars are to high or to low. and I am a ungraduated at Plymouth Uni doing 3d design

If "hive" can tell you when you've left the house with your heating on or you're a mile away and ask if you want the heating on.... Well I think it would be great for a child to have the same sort of reminder!

Meters can be set up to remind you to test though.. It's just whether they get hidden away in school,bags etc. I love my Fitbit watch / activity monitor. Would be great for me to have reminders set up during the day on a watch. Normally alarms are only able to have one alert on watches.

I would love to have one set up in my car as a reminder actually to test pre driving- and think these would be great for adults. I know of people that do not test before driving-so a secret immobiliser attached would be even better!

Sorry to veer off. (As usual). I think your questioning is good because many children just want to be like and do what their friends do so a well thought of, non interfering parental guide could be useful.

 

[plandolfi]

@donnellysdogs thank you for that it is very helpful x

 

[Diamattic]

1– when you go to the GP for your meeting about diabetes what do they ask?

- How are your sugars? How many hypos have you had on average per week?, Do you have any problems or questions?

2-on a scale of 1-10 how useful do you find your appoint with the GP(1 real useful 10 not useful at all)
- Both 1 and 10. Either i have nothing ask and they say "Keep it up" or there is lots to discuss and its super helpful.. so its bi-polar depending on how my health has been.

3-on a scale of 1-10 how useful would it be to have a community you could talk to about it (1 real useful 10 not useful at all)
- A 7 - What do you think this is? lol Its both very uplifting and helpful and also super sad and depressing because who likes to spend their whole day talking about a disease they have to manage constantly. Sometimes its fantastic to just avoid talking about it.

4– would you happily not go to the appointment if you knew your blood sugars and everything was fine and you felt you was handling the problem yourself?
- NO. Even when everything has been perfect I want the appoint to be sure it actually is and I am not missing something.

5– if you didn't have the appointment would you still like the safety net of being able to get hold of a diabetic specialist 24/7
- Of course who wouldn't want a safety net.

6– how do you remember to take your blood sugars?
- I will answer this with another question - How do you remember to drive with your eyes open?

7– in a week how often do you forget to take blood sugars?
- In week how many times do you forget to open your eyes while driving ?

8– in a week how often do you forget to take meds?
See question 7 - NEVER

9– Would a reward system help and what rewards would interest you? E.g not having to go GP, days out, free stuff, treats from girlfriend/parents or other
- The act of taking insulin and checking sugars is reward in itself - without them my day is ruined, I feel like a bag of garbage and I am seriously risking my health and life. There really is nothing better... So no ?

10– did you have diabetes in school? If so how did you/the school deal with it?
- I did not.

11– have you ever felt nagged by friends or family into taking meds or doing blood sugars and if so how did it affect you?
- If you use the word 'Nag' then you know its not a good thing, and is not enjoyable.


No offence but this really feels like a generic survey that you just tossed up here :/ The questions are pretty silly and honestly i have no idea how answering this would provide any insight into anything diabetes related, they just aren't specific enough to accomplish anything. People with T1D can't forget their 'meds' in the way someone with ADHD, or high blood pressure can. If we forget, we very quickly remember about 2 hours later and our day is aptly ruined, so we tend to remember most of the time.

 

[donnellysdogs]

I disagree with response as being that "people with T1D Can't forget their meds".......

A child does forget when they want to be like their friends... There are a lot of postings throughout the years of teenagers and some adults that lose sight of their diabetes...

I think the OP is trying to ask how / what gadgets could assist to stop this happening.

A lot of parents have also been on forum asking how they can get their children to inject and test properly as the children are struggling.

I believe the OP is just trying to find a gadget that parents/children/adults could find useful to stop younger persons getting derailed from their diabetes routines.

Children and youngsters and teenagers and adults will intentionally forget they are diabetic to be the same as friends without routine.

As a child say of 14 and all your friends are going out for a birthday ten pin bowling and food... Would you really want to have to get your blood test kit and injections out and be different from your friends? I was a late teenager on my diagnosis of T1 and it didn't worry me to much but I can honestly say that I've seen too many persons losing the routine needed...

I think the questions are based upon trying to keep responsibilty of testing and injecting etc when kids (and adults) just want is to be the same as their friends and eat anything without worry.

 

[Neemo]

I echo the sentiments of @TorqPenderloin & @Diamattic; the questions belie a true understanding of the nature of Type 1 Diabetes.

In short, Type 1 Diabetes is a CHRONIC, PROGRESSIVE lifelong condition that necessitates constant vigilance.

As Diabetics, we have to replicate the extremely sophisticated homeostatic mechanisms that 'regulate' blood sugar - basically it takes a very high level of effort to approach something resembling a non diabetic (blood sugar levels).

The profound consequence of neglecting diabetes, is a myriad of horrible complications / early death - so please do excuse our cynicism, good control > consequent good health is enough of an 'incentive' for us to remain diligent.

Unlike some of the earlier posters, I have been type 1 since the age of 11 (20 yrs now). I, like many of the individuals on this forum, have always had an inherent conscientiousness with regard to my diabetes. "Do or die" is a rather apt saying in this instance.

This notion that there is a casual nonchalance (youngsters in particular) amongst diabetics, with regard to injecting/testing (as the survey questions allude to) - is a false premise. Not to digress too much (sure you can research for yourself), but there are often disparate issues which poor control can be attributed to;

-Diabullima; A number of young females stop taking their injections because Insulin is correlated to weight gain - so stopping insulin is a means of remaining 'slim'.

Socio-Economic factors; pretty self explanatory.

Wilful Ignorance; No matter how many pictures of amputations/ consequences of poor control you show some individuals, they persist in their ways.

Depression - Again, self explanatory.

My post is not intended to detract you from your objective, but I would say that a lot more research/effort is required.

 

[Neemo]

1– when you go to the GP for your meetingabout diabetes what do they ask?

Pretty run of the mill; have you had any issues, how is your general control. *Important point* - we have our blood work done prior to appointments, this checks HBA1C, kidney function, cholesterol etc. Additionally, they will take blood pressure and check feet - All these tests are health markers; so for all intents and purposes, if these all fall within 'normal' parameters, this indicates health is ok.

4-on a scale of 1-10 how useful do you find your appoint with the GP(1 real useful 10 not useful at all)

I've reversed your scale in answering these questions (1 poor, 10 excellent) 8, because of tests that are conducted, not necessarily advice given.

3-on a scale of 1-10 how useful would it be tohave a community you could talk to about it (1 real useful 10 not useful at all)

8 - food to have other diabetics to share/gain experience from. And non diabetics just *cannot* relate to certain issues we experience.

4– would you happily not go to the appointment if you knew your blood sugars and everything was fine and you felt you was handling the problem yourself?

No, again the checks/markers I mentioned before are very important.

5– if you didn't have the appointment would you still like the safety net of being able to get hold of a diabetic specialist 24/7

N/A

6– how do you remember to take your blood sugars?

It's not a case of remembering, rather, it's something innate..not testing is like wearing a blindfold...

7– in a week how often do you forget to take blood sugars?

This presumes that testing is like medicine, that it is 'required 4 times a day' - I test 10 times a day, some of the other users have 24hr continuos monitors - again, not testing is like having a blindfold on.

Some individuals may choose not to test, for various reasons, but 'forgetting' is unlikely.

8– in a week how often do you forget to take meds?

0.........

9– Would a reward system help and what rewards would interest you? E.g not having to go GP, days out, free stuff, treats from girlfriend/parents or other

not for me no. Being healthy is enough incentive.

10– did you have diabetes in school? If so how did you/the school deal with it?

Some teachers were exceptionally ignorant, whole others were good. I was allowed special concessions to eat In classroom/go to the front of lunch questions etc.

11– have you ever felt nagged by friends or family into taking meds or doing blood sugars and if so how did it affect you?

Nope. I'm a firm believer in personal responsibility.

 

[Nicola M]

1– when you go to the GP for your meeting about diabetes what do they ask?

I go to hospital for appointments. They ask the same things pretty much every time. How's the past few months been? How have your sugars been? Do you have anything you want to ask?

2-on a scale of 1-10 how useful do you find your appoint with the GP(1 real useful 10 not useful at all)

Depends on how the months have been leading up to the appointment. Sometimes it's been a good month and I don't really need to discuss anything, other times it's been a hard month and I have a lot of things to discuss.

3-on a scale of 1-10 how useful would it be to have a community you could talk to about it (1 real useful 10 not useful at all)

I'd say 10. Personally because I'm younger (18) I find it so helpful to be able to ask people who are older than me and wiser in the world of Diabetes. It's nice to get advice from people who understand me and not always have to ask the Diabetes care team who haven't been through the struggles.

4– would you happily not go to the appointment if you knew your blood sugars and everything was fine and you felt you was handling the problem yourself?

Never. Although my blood sugars are fine their could always be something that I'm missing that could be brought up by my team so I always go.

5– if you didn't have the appointment would you still like the safety net of being able to get hold of a diabetic specialist 24/7

Defiantly. I'm able to text my Diabetes nurse which I find really helpful when I have questions etc.

6– how do you remember to take your blood sugars?

That's like saying how do you remember to get dressed in the morning for work. It just comes naturally, you do it without thinking.
7– in a week how often do you forget to take blood sugars?

Never

8– in a week how often do you forget to take meds?

Never

9– Would a reward system help and what rewards would interest you? E.g not having to go GP, days out, free stuff, treats from girlfriend/parents or other

Reward systems for me now wouldn't interest me but for children especially newly diagnosed things like sticker charts could be useful to get them into a routine of testing and giving insulin.

10– did you have diabetes in school? If so how did you/the school deal with it?

In primary school my supplies were kept in a box in the schools office and my diabetes nurse came in to talk to staff about what to to if I went low/high. Just before lunch a midday supervisor would collect me and take me to a separate room to do my blood test and insulin just so I was away from prying eyes.

In Comprehensive school and College it was basically up to me. I kept all my medication with me and low blood sugar stuff and just did my testing/insulin in the open. Although I had the option of using a private room if I wished to. I felt in comprehensive school they cared less and their was less support which I felt wasn't good enough and their could have been more done to help.

11– have you ever felt nagged by friends or family into taking meds or doing blood sugars and if so how did it affect you?

I've had diabetes basically all my life (Since I was 1) so I've never really felt nagged to do my sugars or take insulin. I was left to get on with it myself which I preferred it made me feel more in control.

 

[Juicyj]

I would add that the majority of type 1 diabetics are under the care of a consultant not a GP

 

[lizdeluz]

1– when you go to the GP for your meeting about diabetes what do they ask?

I don't discuss my diabetes very much with my GP, but I attend a hospital diabetes clinic twice a year. The consultant discusses my HbA1c, and reads back through my notes, talking to me the while about his/her impressions. My feet are checked. I'm often referred to an excellent DSN for issues with my meter or pens.
2-on a scale of 1-10 how useful do you find your appoint with the consultant (1 real useful 10 not useful at all)
8. I would like to spend longer in the clinic, but I am already given a considerable amount of time - in my view, diabetes can't be monitored quickly. It bothers me that eye health seems to be hived off into another specialty in my hospital, and there seems to me to be insufficient communication with the diabetes clinic. Does anyone else get this impression where you are?
3-on a scale of 1-10 how useful would it be to have a community you could talk to about it (1 real useful 10 not useful at all)
10. This forum provides this, but, I think a local meet-up would also be beneficial for diabetes communities. I believe there are local organisations which do social and information/education evenings, but I've never gone or found out much about them.
4– would you happily not go to the appointment if you knew your blood sugars and everything was fine and you felt you was handling the problem yourself?
No way, definitely not. However, I would say that, these days, people with diabetes are educating the clinics as well as vice versa, because there is so much information available online. So, it's a two-way thing.
5– if you didn't have the appointment would you still like the safety net of being able to get hold of a diabetic specialist 24/7
I'd want the appointment and the safety-net of a 100%-manned diabetes unit in my local hospital..That's going to happen, right?
6– how do you remember to take your blood sugars?
I don't need to remember, I can't forget
7– in a week how often do you forget to take blood sugars?
I never forget. Once in a blue moon, I choose not to test, but always wish afterwards that I hadn't made that choice.
8– in a week how often do you forget to take meds?
I never forget insulin, it's always with me, by the bed, in the car, at the pool, in Nero's ....
9– Would a reward system help and what rewards would interest you? E.g not having to go GP, days out, free stuff, treats from girlfriend/parents or other
No, it would be a total irrelevance. The only reward needed is feeling healthy. However I agree with @donnellysdogs that there may be a case for rewards/incentives for children with diabetes, but I was not diabetic as a child, so I've no personal experience of this.
10– did you have diabetes in school? If so how did you/the school deal with it?
No, but as a teacher, I have seen teenagers with diabetes really struggle with their condition in school. Plus, you're pretty much on your own as a teacher with diabetes. Also, interestingly, don't know what other teachers with diabetes think, but I guess diabetes-related-expertise of a teacher with diabetes is off-limits in a legal sense with regard to influencing the care of students-with-diabetes in a school.
11– have you ever felt nagged by friends or family into taking meds or doing blood sugars and if so how did it affect you?
No, not nagged, but on rare occasions, I've had good care from my husband and daughter and son, who have noticed my descent into a hypo and have taken action when I was not reacting. In that situation, I feel blessed, definitely.

 

[donnellysdogs]

We have seen (in particular one person that I remember) a lady (youngster) that did not want to carry on anymore.. I mean living.... Hypers and then saying OD'ing with insulin...

I can remember an argumentative youngster (under 25-lol) arguing with a nurse at a reception desk in hospital that he should be seeing hospital despite not attending 3 appointments and intentionally not looking after himself.

Indeed one of my nurses specialises in caring for diabetics that are struggling...

If you think there's what 300,000 T1's in UK? There's not many of us on this forum reallly. Not many actually join up solely for pleasure. We normally have a reason.. Ie hypo's, hypers, wanting a pump, worried parents etc..

I just see this survey as genuinely someone wanting to find a way to help T1's that are or have had struggled.

How many times have we seen T1's worried because they've taken the wrong insulin accidentally?

I myself am now on a cocktail of prescribed drugs - and I really wish that I had something (besides hubby) that would remind me that I've forgotten my basal insulin at night. In 30 years I've never done this. Due to cocktail of drugs I've forgotten twice in 2 months! And thats after 30+ years of T1.

There are people that struggle for numerous reasons to keep up with regimes as necessary..

I certainly have not been an angel all my life!! If I didn't have my hubby with me now.. Well with the drugs I'm on I do not know how I would keep to the regime that is necessary. Even look at @Molly56 posts with partner as a type 2 insulin user that struggles with regimes.

Look at the failing rates of T1's in achieving hba1c levels that GP's want under the DES guidelines.

Please, please consider that we are all individual and at some time due to some reason many people struggle. Might not even be their fault they struggle and need reminders etc.

 

[tim2000s]

@plandolfi I'm answering these questions from my perspective, however, the people on this forum are generally not representative of the Diabetic population at large. We probably represent less than 10% of the UK T1s in our engagement and management practices. I've discussed this with a number of the Social Media aware Diabetologists on-line and it's a point they make over and over again. Many of the participants in the DOC are far more engaged than their average patients.

I would strongly recommend working with a hospital clinic to reach those who really struggle and need help. You would get a much more realistic summary of what the issues are that they face. I think @donnellysdogs is making a very good point in relation to this. Anyway, on to my answers to your questions.

1– when you go to the GP for your meeting about diabetes what do they ask?
I don't see my GP for my diabetes. They simply prescribe supplies.

4-on a scale of 1-10 how useful do you find your appoint with the GP(1 real useful 10 not useful at all)
Not applicable.

3-on a scale of 1-10 how useful would it be to have a community you could talk to about it (1 real useful 10 not useful at all)
I already have one here and amongst the T1s I meet up with in London. It is a 1 in terms of usefulness, but if you assume that T1s make up fewer than 0.5% of the UK population, in any surgery that is likely to account for fewer than 10 people!

4– would you happily not go to the appointment if you knew your blood sugars and everything was fine and you felt you was handling the problem yourself?
As mentioned, not applicable.

5– if you didn't have the appointment would you still like the safety net of being able to get hold of a diabetic specialist 24/7
No.

6– how do you remember to take your blood sugars?
It's 27 years of habit. As a T1, I'd say "forgetting" to take blood sugars for me is a choice rather than an accident.

7– in a week how often do you forget to take blood sugars?
Never.

8– in a week how often do you forget to take meds?
I've forgotten once in the last 10 years. And "forgetting" isn't the correct term - distracted at the last button press on the pump is a better description.

9– Would a reward system help and what rewards would interest you? E.g not having to go GP, days out, free stuff, treats from girlfriend/parents or other
No, but I'm an engaged patient.

10– did you have diabetes in school? If so how did you/the school deal with it?
Yes. It was fine with it. Parents explained what needed to happen and the school dealt with it. The rules have changed rather since then.

11– have you ever felt nagged by friends or family into taking meds or doing blood sugars and if so how did it affect you?
Of course. As a child, this happens all the time. And as an adult when they think you are low, partners have a habit of asking you to check too.