Hi Forum, What support should I be expecting ?

[Darren InTheSky]

Hi, quick intro, I'm new to this site but have been living with Diabetes for over 20 years. As I've recently turned 50 and very sport orientated, I fear this may slow, 35 years of playing Hockey does cause a few issues, I thought I would make some enquiries as to the levels of health support available. I have been pretty much fully independent of my own health management and have not engaged with any diabetes professionals barring the annual 'are your toes still sensitive' test. I have been Insulin dependant for all 20 years, usual multiple daily blood test and both short (meals) and long term daily injections. So, I approached my local Doctors practice Diabetic Nurse during my last check to ask for advise on maintaining my independence from relying on health services. I was told that I had everything under control and therefore any further support was not required. After a little debate I was put into contact with a district Diabetic Nurse where it became very clear that as my 'records' showed me being a Type 2 there was no referral mechanism for further support. The nurse did note that my needles I have been using for almost 20 years had stopped being prescribed 5 years ago but were still being given to me! I took a C-PEPTIDE test which confirmed my result as Type 2 and was told there was no further support. A year later I'm still trying to get a referral to see a Diabetic professional. So whilst I'm managing, I am concerned what might be around the corner. It can't be that being a TYpe 1 offers greater access to support than a Type 2 Insulin dependent. Or does it? having read the great article today regarding the 'loop' system I do fear that I'm being ignored by our health service as I've never even been able to speak to someone to confirm whether the insulin I'm taking is correct or whether other options are available. This also applies to requesting access to the Libre test versus daily finger pricks. I do apologies for the diatribe above. Any advise or guidance would be gratefully received. Regards

 

[Vonny]

Hi @Darren InTheSky, and welcome to the forum. I'm probably not best placed to advise as although I'm a T2, I'm just on metformin. As a T2 I still get annual reviews, and my bloods are taken every few months but apart from that I'm told I'm doing well and to continue what I'm doing.
I assume you also have a meds review at least every 12 months?
I don't know what other support is in place, but I suspect it's a bit of a postcode lottery.

 

[Darren InTheSky]

Hi @Vonny thanks for your reply. I've been on Novarapid and Lantus pretty much for the last 20 years. Now, both may be working well as I've been able to manage my levels but I do worry that my body will build up some kind of tolerance. My trouble is that I can't seem to get beyond the 'Type 2' tag to be able to speak to anyone and I struggle to understand how being Insulin dependent type 2 detracts from further support. I don't want to be a burden in the future so wondering if anyone has had the same experience and found a route to get around this obvious tiering system?

 

[Lucyr]

Hi @Vonny thanks for your reply. I've been on Novarapid and Lantus pretty much for the last 20 years. Now, both may be working well as I've been able to manage my levels but I do worry that my body will build up some kind of tolerance. My trouble is that I can't seem to get beyond the 'Type 2' tag to be able to speak to anyone and I struggle to understand how being Insulin dependent type 2 detracts from further support. I don't want to be a burden in the future so wondering if anyone has had the same experience and found a route to get around this obvious tiering system?

It really is a two tier system, I’ve never found a way past the T2 label to get access to anything even though I’m on MDI, diagnosed at 20, have some atypical features for T2. If we had a T1 label we’d be able to ask about carb counting / insulin adjustment courses, libre sensors, CGMs, insulin pumps, etc. Obviously those things aren’t a given for T1s and criteria still apply, but it is widening for T1s and for things like libre over half of T1s have them.

A T2 label even on identical treatment to a T1, and with the added complication of your body still producing insulin but erratically, you just don’t qualify for the same support / treatment options.

 

[Leadinglights]

I'm sure there is a scientific explanation but I am puzzled about what it is that makes somebody able to maintain normal blood glucose levels with diet and or oral meds whereas some people need insulin but are still categorised as Type 2. There really should be a different designation so they can receive more appropriate support without having to go through hoops of fire to get the help they often need early in their insulin use.

 

[barrym]

As above. My move from surgery nurse to specialist care was triggered by insulin. OK I'm LADA so it was a quick crash. Healthy but losing weight. GP did a dip test of wee, and sent me next door to surgery nurse. I was given metformin, a blood meter and a bit of tuition. After a couple of weeks with no improvement I was 'upgraded' to DHPs and consultant. Lots more attention, but not Rolls Royce. Manage your expectations.

 

[Proud to be erratic]

Hi @Darren InTheSky , I'm T3c & treated as if T1, so know little about T2 support.

But last Friday the updated guidelines from NICE ere promulgated, 31 March 2022. In the General Message board @everydayupsanddowns started a thread informing the forum that the updated Guidelines were now official. Link: Type 2 diabetes in adults: management – glucose monitoring
T1 is NG17, T2 is NG28.

I was interested in T1 details. But, if I were in your position, I would read the T2 Guideline (NG28) carefully and then use the appropriate clauses to politely, but robustly ask my GP to refer me for whatever I felt I needed and was appropriate. As I read it, I deduce you should be having an annual meds review to confirm you are still on the right meds and now you might fit the eligibility criteria for Libre. There is good leverage in being armed in advance with the relevant references.

In the possible event that your GP won't 'play' or what you seek is not covered in the latest guidelines, then I would send a polite email to my MP, copy to my GP: 1) seeking help for my circumstance and 2) asking why, despite the obvious disconnect between T2s who are and aren't insulin dependent, has NICE failed to address this? NICE clearly knows from many years ago that there is a fundamental difference, (deduced from other clauses in the updated Guidelines).

Shaking this tree won't necessarily guarantee you an instant solution but it will keep the contradiction in sight. It might also get you a solution, because the "system" will try to do the right thing when an MP asks a question. It's not right as a principle ..... but it can work!

 

[everydayupsanddowns]

Sorry you aren’t able to access appropriate levels of support @Darren InTheSky - It must be hugely frustrating for you

Do you know what the numbers were for your cPeptide result, and where you were within the reference range? Did you take that privately or was it requested and interpreted by your surgery.

For someone who went straight onto insulin in their 30s, and has always been active/sporty it does seem unfortunate not to have been checked for LADA (slow onset T1) earlier in your diabetes journey.

Did your diagnosis come about rapidly? Was there any weight loss? Did you have ketones?

You aren’t alone in being surprised and more than a little frustrated by the divide between available care resources. Particularly as T2 seems to be an umbrella term applied to a number of quite different types of diabetes - and sometimes simply assigned because someone presents with diabetes who is not a child. Which is completely wrong, as T1 can develop at any age!

If you haven’t found it already the BERTIE online carb counting / insuln management course (aimed at T1 but almost certainly adaptable to your circumstances). Plus as @Proud to be erratic says, access to Libre is now being recommended by NICE for some who are classified as T2.

 

[Darren InTheSky]

Sorry you aren’t able to access appropriate levels of support @Darren InTheSky - It must be hugely frustrating for you

Do you know what the numbers were for your cPeptide result, and where you were within the reference range? Did you take that privately or was it requested and interpreted by your surgery.

For someone who went straight onto insulin in their 30s, and has always been active/sporty it does seem unfortunate not to have been checked for LADA (slow onset T1) earlier in your diabetes journey.

Did your diagnosis come about rapidly? Was there any weight loss? Did you have ketones?

You aren’t alone in being surprised and more than a little frustrated by the divide between available care resources. Particularly as T2 seems to be an umbrella term applied to a number of quite different types of diabetes - and sometimes simply assigned because someone presents with diabetes who is not a child. Which is completely wrong, as T1 can develop at any age!

If you haven’t found it already the BERTIE online carb counting / insuln management course (aimed at T1 but almost certainly adaptable to your circumstances). Plus as @Proud to be erratic says, access to Libre is now being recommended by NICE for some who are classified as T2.

Thanks for your reply. My diagnosis came on very quickly. A quick trip to the optician, as I thought my lenses required an adjustment, turned out to be cloudy fluid in my eyes. A same day visit to the doctors and then into hospital with a blood sugar reading of 37 at which point I realised I had been experiencing all the 'classic' systems for the prior month. No over night stay, quick jab, and sent home. I was put on a course of insulin immediately, believe NovaRapid) which worked a treat. Perhaps too well as I spent most of the next month dodging Hypos. The doctors believe that my pancreas kickstarted back into action so was told to stay off insulin until symptoms returned which they inevitably did some 2 years later. That was 20 years ago and apart from the annual check up (not meds, just blood test) I've been out of the system.

I will take a look at the course now. Thanks for the direction.

Cheers

 

[Darren InTheSky]

Hi @Darren InTheSky , I'm T3c & treated as if T1, so know little about T2 support.

But last Friday the updated guidelines from NICE ere promulgated, 31 March 2022. In the General Message board @everydayupsanddowns started a thread informing the forum that the updated Guidelines were now official. Link: Type 2 diabetes in adults: management – glucose monitoring
T1 is NG17, T2 is NG28.

I was interested in T1 details. But, if I were in your position, I would read the T2 Guideline (NG28) carefully and then use the appropriate clauses to politely, but robustly ask my GP to refer me for whatever I felt I needed and was appropriate. As I read it, I deduce you should be having an annual meds review to confirm you are still on the right meds and now you might fit the eligibility criteria for Libre. There is good leverage in being armed in advance with the relevant references.

In the possible event that your GP won't 'play' or what you seek is not covered in the latest guidelines, then I would send a polite email to my MP, copy to my GP: 1) seeking help for my circumstance and 2) asking why, despite the obvious disconnect between T2s who are and aren't insulin dependent, has NICE failed to address this? NICE clearly knows from many years ago that there is a fundamental difference, (deduced from other clauses in the updated Guidelines).

Shaking this tree won't necessarily guarantee you an instant solution but it will keep the contradiction in sight. It might also get you a solution, because the "system" will try to do the right thing when an MP asks a question. It's not right as a principle ..... but it can work!

thank you, great advise. I've quickly scanned the NICE updates and can see a couple of areas that I will follow up on immediately in more detail but for sure there is still a disconnect in the guidance and care which just doesn't sit right. I'm now on a mission !

 

[Proud to be erratic]

thank you, great advise. I've quickly scanned the NICE updates and can see a couple of areas that I will follow up on immediately in more detail but for sure there is still a disconnect in the guidance and care which just doesn't sit right. I'm now on a mission !

You are most welcome; let us know how you get on - in due course.

 

[Darren InTheSky]

Hi All, just closing out on my initial question on what support I should be receiving. After 18 months of pushing my case forward with our local trust I have now managed to be accepted to a 6 month trial using the FreeStyle Libre. I'm not sure if it was my nagging or the change in NICE advise that led to progression however one week into the trial I have had my eyes completely opened to the daily track of my glucose levels which somewhat explains my A1c results. I'm now moving, in very small steps as advised, to taking informed decisions on my own care rather than ignorant bliss on what I thought I had control over. I had my first meeting also today with a district specialist nurse which only added to my relief on the support available if not to the frustration on what I feel should have been made available to T2 since the start. Either way I'm now on the road to having a better understanding on how I manage my Diabetes. Thank you for the comments posted. Great Community. Cheers

 

[everydayupsanddowns]

Thanks for such a positive update @Darren InTheSky

Glad your persistence paid off, and that you’ve been able to make some big changes in response to the information Libre has shown you.

Well done! And keep going 🙂