Inconsistent T2D advice

[Clifton]

I'm a mere matter of weeks into my T2D journey, with a very recent formal diagnosis.

Even in my own GP practice, there's a huge amount of inconsistencies in the advice and direction given which for a complex, long term chronic condition needs looked at.

- One DSN tells me I'll never need to test my blood sugar and to simply gauge progress vs. quarterly HbA1c results.

- The other DSN says the opposite and gave me a spare Accu-Chek mobile, lancets and cassettes as the rep had been in. Says it's good practice to test BG three times a day, with a critical FBG measure.

- The "enlightened" DSN has assessed me as high risk for neuropathy as two toes failed the tickle test in order to to get me priority access to podiatry services. The other questioned it...and said "not necessary"...

- One is a box ticker and the other takes into account individual circumstances and provides tailored advice.

This is just one practice; I imagine these anomalies exist throughout the whole NHS in one shape or another.

I believe I'm lucky in that the core team responsible for my health care are responsive, listen and allow me to participate in all matters regarding my care.

Wondered what your experiences are?

 

[Vonny]

Ah, the thorny monitoring question for T2s! My DN is really good, but even she discouraged me from testing, even though it's been a major reason for my success in reducing my hba1c. I don't think I could ever have identified what I can and can't eat without it. You are very lucky to be given one; most T2s have to fund their own. You are fortunate that you have the "enlightened" DN at your practice, it's just a shame the other one works there too!

 

[Nick Cliff]

Hi @Clifton and welcome to the forum.
I've been fortunate in that the 2 nurses and 2 GPs at my surgery all say the same things and also listen.
Initially I was encouraged to test in order to better understand the impact of different foods and also to help achieve my targets. In time though my strips and lancets were removed from my prescription. The GP said my control was stable, which was true, so testing was not necessary --though it was suspiciously close to my 60th birthday when I would no longer pay prescription charges! Having since lost that control I have gone back to routine testing, paying my way. Fortunately I can afford it. I only test every few days so that I pick up trends so I avoid lapsing.
Cheers. Nick

 

[Nayshiftin]

My nurse just said oh let us test you. Oh go on meds and get on with it. Self-inflicted as your so obese. Lose weight and it will come right. I have got a book from here now and will keep testing and working on my journey. I don't like the medication much but my bmmols are not down enough or staying low enough for me to try without. Good luck all

 

[Ljc]

@Clifton . I am glad to hear that you have an enlightened diabetes nurse. If possible try to see her in future.

 

[Ljc]

My nurse just said oh let us test you. Oh go on meds and get on with it. Self-inflicted as your so obese. Lose weight and it will come right. I have got a book from here now and will keep testing and working on my journey. I don't like the medication much but my bmmols are not down enough or staying low enough for me to try without. Good luck all

That is shocking to hear that a Nurse treated you like that , I trust you reported her .

 

[everydayupsanddowns]

Sorry to hear of the negative experiences people have had. In partI wonder if some of the differences are because each of the bits of advice might be more appropriate for a different person, or a person who wants to handle their diabetes in a different way?

Certainly there is no place and no justification for judgemental and stigmatising language, or for being sluggish to refer on for specialist support where problems are spotted early.

But we have members on the forum who prefer not to check their own BG, or who find the flow of information slightly overwhelming, and prefer to work towards more occasional HbA1c checks, just as we have a wide variety of approaches to menu and eating plan, because different approaches suit different people 🙂

I think the best HCPs i have dealt with have treated my ‘hands on’ experience as important, have been able to offer suggestions based on their wider knowledge of diabetes and physiology as a whole, and have helped me to find my own way through the options and choices that might work.

 

[Nayshiftin]

That is shocking to hear that a Nurse treated you like that , I trust you reported her .

No, to be honest the truth hurts, she did get my bloods done quick and try a medication other than the usual metformin or Sukartto which I did not cope with. I needed to change my ways. I think really it is up to us to take charge of our diagnosis . I am just so grateful for the support people give here.

 

[Ljc]

No, to be honest the truth hurts, she did get my bloods done quick and try a medication other than the usual metformin or Sukartto which I did not cope with. I needed to change my ways. I think really it is up to us to take charge of our diagnosis . I am just so grateful for the support people give here.

Yes it is up to us however, I detest the blame culture and their is absolutely no reason for being rude to you because of your weight and then also not giving you proper advice, shame in her.

Listen don’t get me wrong, we all need a kick up the backside from time to time, but their is a way to do it and the way she treated you is not the way. Not very professional in my view.

 

[trophywench]

I've told this tale before - now I have ALWAYS been treated in the main by a proper Hospital Diabetes Clinic - my first consultant was actually a Teaching Professor at Birmingham Uni Medical School - and a moving force after the War, in pioneering treatment for pregnant Type 1s to assist them achieve live births - virtually unheard of to get that far prior to that.

Sooo, after coming off once a day porcine Ultralente and onto Humulin I and S (MDI but by no means the best - immediate unexpected hypos and the car crashes to prove that) I moved to Coventry. First clinic I saw a German doctor who said if my BG dropped low 'you must immediately eat a little piece of bread' to stop it. Really helpful after having D for nearly 30 years. Like I didn't know that?

Anyway, next time I saw a British chap who sighed when I explained my difficulties with sudden totally unexpected hypos having had a BG of 8 ish before getting in the car 15 mins ago -and started me on Lantus & Novorapid. Nusie at clinic produced the pens and letter to GP and I asked her how many grams of carb to one unit of Novo should I try to begin with?

'Put that thought out of your head immediately Mrs S - you must absolutely NOT EVER AGAIN count carbs - and if I ever hear you are doing it - you will have to answer to ME!'

So the people on Diabetes Insight taught me to carb count, and when I later did the dafne course at the hospital, another lady mentioned she'd been told that too, and was hence doubting what she was now being told? The nurses didn't know what to say and were both saying OOh, don't know who or why you'd have been told that, I'm sure! - so i said 'Hang on a minute there, please! - This lady is absolutely telling the truth because I was told exactly the same thing - but fortunately because I thought that didn't sound right - I resorted to the internet!' I wonder how many other UHCW patients she told the same?

I never saw her again, just as well really, vicious old bat.

 

[Pumper_Sue]

I believe I'm lucky in that the core team responsible for my health care are responsive, listen and allow me to participate in all matters regarding my care.

The best solution is to take care of your own health as no one else will. Learn all you can and act in your own best interests.

 

[Ginny03]

To be honest, the approach they take to type 1s isn't much more consistent! I once questioned my nurse on why she was advising me to do something that was contrary to clinical guidelines... Never did get a satisfactory response!

 

[Nayshiftin]

Yes it is up to us however, I detest the blame culture and their is absolutely no reason for being rude to you because of your weight and then also not giving you proper advice, shame in her.

Listen don’t get me wrong, we all need a kick up the backside from time to time, but their is a way to do it and the way she treated you is not the way. Not very professional in my view.

Thank you for the support

 

[Nayshiftin]

The best solution is to take care of your own health as no one else will. Learn all you can and act in your own best interests.

I agree, conversely I believe as part of how I felt I went into a bit of grief mode. Maybe others might feel the same . If not it’s just personal. However, I went into denial and ate all the wrong things ignoring not taking the medication as it upsets me. Felling a bit like this with this medication too . However I let it escalate until I was ill put on even more weight and got a wake up call. I think if I had a team calling me for regular HBAc1 every 3 months or had I looked after number one, I’d not have made myself so ill. Even now I’ve never seen a hospital Dr. or clinic. Only my HbAc1 tells them I am in the diabetic range. I am very down and well after the last help. Self Refer to physio and a diet place. I telephoned diet place to be told if it’s diabetic you need a GP referral . I got back to nurse who said then . You don’t need it to be diabetic your just very obese and drastically need to lose weight. She said she’d refer me and get them to knock me into shape. That diet team have not got back to me. Three weeks on. It really is all down to me. I’m on Alloglyptin giving me sore stomachs and bad headaches. I might not even go back. However my HbAc1 was 76 and glucose tolerance was 16.9 not sure but not mega high but not in normal range. I was getting spikes on my meter of 27 which was in danger zone. I am now in single figures just with the meds but rarely below 8 and still in double figures on waking. So feel I need something. I am losing weight deliberately but it needs a lot of work. As she says I am fat and type two has been self inflicted. I just don’t seem to be able to get it good even on the meds and diet. I’m in the right direction. I however need to stop as head is banging again .

 

[everydayupsanddowns]

I am now in single figures just with the meds but rarely below 8 and still in double figures on waking. So feel I need something. I am losing weight deliberately but it needs a lot of work.

Sounds like you are making great progress @Nayshiftin - despite some less than helpful conversations with HCPs and some difficult reactions to the medication.

I just don’t understand the tactic of confronting people with blame and stigma. Those are so demotivating, and counterproductive. People need to be encouraged and motivated. Managing diabetes is hard enough without having to carry all that negativity at the same time!

 

[Nayshiftin]

I am working on that .

 

[Leadinglights]

You have made a great start but don't forget it can be a slow gradual process for most people. I know some can achieve fantastically quick improvement in their results with the meds and dietary changes but sometimes that has it's down side in eye and neuropathy symptoms, so slow and steady can be better although it can feel as if you are getting nowhere.
Pre diabetes it used to annoy me when people said oh I just cut out cakes and biscuits and I've lost Xlbs and it made me think, that's all very well but I don't eat cakes and biscuits so what do I do.

 

[Nayshiftin]

You have made a great start but don't forget it can be a slow gradual process for most people. I know some can achieve fantastically quick improvement in their results with the meds and dietary changes but sometimes that has it's down side in eye and neuropathy symptoms, so slow and steady can be better although it can feel as if you are getting nowhere.
Pre diabetes it used to annoy me when people said oh I just cut out cakes and biscuits and I've lost Xlbs and it made me think, that's all very well but I don't eat cakes and biscuits so what do I do.

I do know the feeling folks think your diabetes is high too because of chocolate or what they seem naughty . Today I tried Rye bread for breakfast it moved the bmmmold up 3 after being 7 to over ten two hours I took meds then too at bfast . However it was back down by lunch so I am confused as I don’t want a hypo but then I don’t want it up either . I’m still experimenting then I shall see. On the other side you are right I could be making neuropathy worse. No one really to help and 5 mins with nurse will be too little.