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streakyhair

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Hi All!!


I?m a Nurse Practitioner working on A&E. I've recently decided to study Adult Branch and have chosen to do some extensive study into Diabetes. It?s a particular interest of mine which I would like specialise in eventually.

I am hoping you can help me with two simple questions I have been putting forward. I am asking a wide range of people so I can best assess the more prominent difficulties when dealing with diabetes.



What are the four main challenges face by diabetics when coping with on-going treatment plans?

and....

What has been the most effective health care support found to help you with these issues?


I hope you can help me and would much appreciate your feedback from those who are best qualified to know 😉

Thank You Kindly,



Kirsty
 
Hi Kirsty, welcome to the forum 🙂 Nice to hear from someone who is looking to get actively involved in our well-being!

Your first question might be answered differently depending on what the person's experience of diabetes is, as treatments and experiences can vary widely. As a Type 1, my main problems are adjusting my insulin doses to respond correctly to a myriad of factors in order to keep my blood sugar levels in a very tight range. Having to think about it everytime I want to eat, and also having to plan my activities to fit in with the timing of my digestion and insulin doses (an insulin pump would improve this situation). Worry of night lows can also mean disrupted or sleepless nights (like lat night, when I woke in the middle of the night at 2.6 - I was lucky I woke up!)

The best health care support has come form the DSNs I have spoken to, who are knowledgeable and effective communicators, and good listeners. 🙂
 
I moved this to the General Messageboard so hopefully more people will see it 🙂
 
Hi kirsty, im type 1 diagnosed 5 years ago when i was 21. Been on a pump for 2 years

Question 1:
A) Having to constantly keep on top of my sugars which are affected by everything from food, exercise, stress, hormones, weather, etc etc
B) Carbohydrate counting everything i eat, measure and weigh everything. Makes eating socially very difficult if i want tight levels
C) The lack of education i recieved on diagnosis, i think they were scared of overwhelming me (it really is a lot of information) but meant i literally had no idea what i was doing.
D) My Gp was appalling, he was supposed to be the diabetic specialist but had no idea and even tried to tell me i was a diabetic (again he'd already told me this 6 months before)

Question 2: My specialist team at the hospital are awesome. They really bend over backwards to help me since i was referred 3 years ago. They text me and email. Also they hold special pump seminar groups to help us support each other.
 
Hi Kirsty.

4 main challenges..

Agree with Northerner on insulin doses to match carbs & timings. Probably more the lack of helpful advice.
The postcode lottery of knowledgeable professionals. Diabetic care depends greatly on who you get to see.
Trying to fight/argue for what we see as essentials, but GPs often see as expensive consumables. Blood test strips as an oft quoted example.
Fighting the urge to say "s*d it all" and stomp off to the nearest cake shop to eat as many cream puffs as possible before rationality returns !

The most effective support for me has been the couple of really, really good DSNs I've had over the years. Ive moved a lot and had mostly mediocre care but a couple have known everything and been willign to listen and believe what I tell them.

I wish you all the best and thanks for asking. It can make a world of difference.🙂

Rob
 
Hi Kirsty, from a type 2. I take Byetta, Gliclazide and metformin.

Main challenges
A constant pressure to lose weight, easier to do now I'm on Byetta but a complete nightmare when I took Actos and then Gliclazide.
The worry that my beta cells will die and I will have to take insulin and the Byetta will no longer work.
Eating at other people's houses who have no idea that there are some things I shouldn't eat
Lack of education on diagnosis and no means to take control of it myself ie a meter and testing strips. I had no idea how serious this was and no idea about how to prevent it from getting worse until it did get a lot worse.

The most effective support occurred once things became dire and I was referred to the hospital diabetic clinic.
 
Did you really have to bloody mention cream puffs? tsk!! haha ... I'm kiddin :D

I personally went a year without even touching my insulin ... my Doctors and Diabetic nurse was extremely surprised that I'd not been really ill over the time. I've never really ate much sweet things ... never really bothered with fried foods n chips n stuff.

Getting back into the swing of things with my insulin and finger pricking however has been a struggle ... I've messed up once remembering an hour later than i was supposed to that i should have had my insulin.

I've not been advised of carbs & timings ... since i've been diagnosed ... and that's been 6 years!!

The most effective support that i've been given is my new nurse ... she's not like the daft cow i had i Scotland!! Very down to earth ... easily approachable ... just have to pick up the phone to her and if she's busy she'll call you back straight away.

I also have to admit ... This forum is a godsend!! I don't know what i'd do without it now a days!! I honestly and genuinely believe that this forum should be more widely advertised as it's a benefit to everyone!!
 
Thanks Peeps!!!

🙂Thank You!!

I’m really appreciative of your help!!! From my study so far there dose appear to be a big divide between the really good advice from some health care professionals and then contrasting to that, at times really limited advise given by others. More consistency seems needed.
I’m grateful to anyone who posts a reply as it is your views I’m interested in at the end of the day.
Are you all pretty agreeable the challenges mentioned above?
What about non-insulin-dependent diabetes? mellitus type 2.. What are your views?

Kirsty
 
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streakyhair said:
Hi All!!
What are the four main challenges face by diabetics when coping with on-going treatment plans?

and....

What has been the most effective health care support found to help you with these issues?

Kirsty
Click to expand...

Question 1 the most major challenge coping with any kind of care plan is my doctor. He is reluctatnt to share test results and even less reluctant to tell me if my medication is changed. I always have to go back and ask him why it's changed and what it is for.

The most effective health care support I have found is this forum as I can come here and ask all kinds of questions. My pharmacist is also helpful if I ask him.
 
Listen to what your patients are saying please do not be judgemental everyone is different build up a rapport with your patients it will help both of you from a missdiagnosed patient now LADA not type 2 [ not one person was listening to me ]
 
Hi there

I am T2, diagnosed 2000, on tablet meds for 8 years, then onto insulin and tablets 18 months ago.

My main points are

1. as a T2 I am not elligible for DAFNE, and I have to self teach carb counting

2. not nearly enough access to a DSN, there are very few, more information is acquired here on this Forum

3. felling kind of left out as an insulin T2, I am not in the T1 insulin camp and no longer in the T2 tablet camp

4. I believe I was diabetic at least 5 years before diagnosis, why did it take GP so longer to register diabetic

As a health professtional thanks for taking the time to ask questions

Good luck
 
Like Hazel above, I am a type 2 on insulin and have been on insulin since day one of diagnoses.

As a type 2..there are no educational courses in my area for diabetics on insulin. I have taken this up with my PCT and local MP to no avail

As an insulin dependent type 2 I also feel on my own..left out of type 1 catagory and also out of type 2 on tablets catagory

As for DSN...not seen one since discharged from hospital after diagnoses 5 years ago..

My care comes from the GP practice nurse that has had 2 days training in diabetes, and cannot advise me on carb counting or even insulin doses or changes.


John
 
Hi Kirsty

Thanks for adsking your questions.

I think you've had some pretty good responses already, but I'll just add the following:

1. Thousands of T1s and T2s every are put on potentially lethal rapid acting and long acting insulins with little or no information about measuring/ monitoring/evaluating the carbs they need to eat to match their doses (I've written a couple of blog posts about this with more details

2. Diabetes of all varieties often doesn't play fair and is different for everyone

3. T2s who are self motivated and interested in tight control should be encouraged to establish an effective regime of SMBG (blood testing). There is little sense in providing pre and post-meal targets for BGs without providing some means of measuring progress

4. Many HCPs/dieticians appear to provide quite damaging dietary advice to T2s. I hope I'm not speaking out of turn as a T1 but advice which seems to have been meant as 'eat controlled/measured amounts of low GI carbs to aim for target BG readings' is often given as 'eat *lots* of starchy carbs at every meal'. Some T2s seem to be able to cope with more carbs than others, but I have read of few who find 'lots' manageable at all.

In terms of advice and support. I'd say it's pretty much split between Consultant/DSN and peer support on forums like this one
 
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As a T2 I've never seen a consultant or a dietician, just my GP and the practice nurse. I feel ignored, probably because of my age (63) and nobody ever mentions my neuropathy, which is getting quite bad. I just feel like crawling into a hole and waiting for the grim reaper.😡
 
KateR said:
As a T2 I've never seen a consultant or a dietician, just my GP and the practice nurse. I feel ignored, probably because of my age (63) and nobody ever mentions my neuropathy, which is getting quite bad. I just feel like crawling into a hole and waiting for the grim reaper.😡
Click to expand...

Kate! We're here for you my friend, whenever you need us 🙂
 
Hi, first question - same reply as the other T1s. second question - having access to a medical professional with expertise in diabetes and its management and being able to phone or email them for advice when things go awry. good luck!
 
Hi I am a type 2 for the moment

4 Areas are

1) Difference and also lack of support from different doctors and nurses. Some are excellent whilst others have little or no understanding.
2) Time and waiting for appointments and results takes a long time and litlle can be done about it as you are left waiting for letters to be delievered from one to another
3) Knowing what is right to eat etc with little or no direction from professionals and very poor reporting of stories in the press making out you are some sort of burden on society.
4)The never ending battle to be able to test blood levels through the day and have enough strips etc to do so through prescription. I have to return every other week as they will not give me enough strips because of cost issues, yet it was the consultants who want me to do this over three months?!

AS for care that has been mainly through this site andmy wife no where else.(thank god it was here it has been a real life saver!)

Yet to meet a DSN and still waiting for results from 6 weeks ago. This is also holding up my eye scan, feet check, dietition and for all i know any understanding of if i am on the right drugs, dossage, diet even if i am t2!
 
KateR said:
As a T2 I've never seen a consultant or a dietician, just my GP and the practice nurse. I feel ignored, probably because of my age (63) and nobody ever mentions my neuropathy, which is getting quite bad. I just feel like crawling into a hole and waiting for the grim reaper.😡
Click to expand...

Hi Kate,

Pester them and ask for a referal to the hospital for your neuropathy. there's some stuff in balance magazine about neuropathy. If you don't get the mag, PM me and I'll tell you what it says.
 
I'm type one, diagnosed age 11, 33 years ago. Although I didn't know it at the time the most valuable help and advice came from being taught to count carbs at the very beginning. I wouldn't have stood a chance without that. It does also seem that things have to get bad before action is taken. I had a stroke 3 months ago and was admitted to hospital. The diabetic team came to see me, asked about how I felt re.control and changed my insulin, that has helped a lot and could have been done years ago. The longer you have had diabetes it gets presumed that you are ticking along ok, this is not always the case and new insulins etc may be of benefit but often aren't considered or offered.

The hardest thing is as others have said the continual vigilance, never being off duty from diabetes - it's terribly wearing and health professionals don't seem to appreciate this.

This forum is a Godsend - real people, dealing with the real issues, helping one another. I don't know how I'd manage now without it.
 
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