Referral = New Diagnosis = Stupid NHS

[tomcamish]

Morning All,

Hope you all had a good Christmas and didn't get too high with all the roast potatoes and Christmas Pudding - I know I did!

For the last 18 months (ish) I've been on Metformin to treat my Type 2 diabetes. My HbA1c at diagnosis was 142.

When I went for my review at the end of October it was with someone I had not seen before (I had been seeing the same nurse every time but she had broken her leg so couldn't work). The first thing she said was "you need to be on insulin", which she prescribed (Humulin 70/30) - what a difference that made!

I went back 2 weeks before Christmas where we went into detail about my history so she could put together a weighty referral letter to the specialist Diabetes clinic at the local hospital - somewhere I had been asking to be referred to for over a year.

I had my first appointment there yesterday. After 3 vials of blood was taken I was seen by a "Professor" who took one look at my history and my HbA1c (which is now 72 - the Humulin brought it down from 98) and said "I think you are Type 1". He then went on to explain why he thinks that and said I should have been on insulin from the start. When I told him that my nurses response to my asking for the Type1 blood test was "there's no point as you're definitely Type 2" he shook his head and said simply "that is wrong, you are type 1".

So, another blood test to check for the Type 1 antibodies, and I've now been booked in for another Dietitian course, a Carb Counting course and the DAFNE course, in preparation for being set up with 3 fast acting and 1 slow acting jabs on the DAFNE regime at the end of January.

So, well done NHS! Thanks for sticking to the "you're overweight so must be Type2" stereotype for nearly 2 years, giving me the wrong treatment for nearly 2 years, and ignoring my requests to confirm which type I am.

 

[Stitch147]

Glad you finally got the answers you need and the right treatment. Hope all the curses and new insulin regime work well for you.

 

[KateR]

Well done that nurse but it's a pity the other one had to break her leg to find out.

 

[Ljc]

Just for your sake it sounds to me like it was a good job she was off sick so you had to see another nurse, who thankfully had her head screwed on the right way.
You'll soon get the hang of matching your insulin to carbs eaten.

 

[Caroline]

It took me having toes amputated to get to the specialist clinic at the hospital and that was because I asked the doctors there. I was told they'd be happy to take me as I'd had complications and were better placed to keep an eye on things from now on. I also see the podiatrist in the diabetic foot health clinic.

If it is any consolation the nurse (not a specialist nurse) contradicts the advice given at the hospital like mad. I follow the hospital advice and still ask questions if I need further advice.

 

[mikeyB]

Well done for getting on the right medication, and gettting the right diagnosis. It's such a common story on the forum (me too back in the day) that it's almost a rite of passage now.

Best of luck with all the courses and the new meds. Keep in touch, and let us know how you get on🙂

 

[graj0]

I was told I didn't have appendicitis because I was 63, so they waited until I had a burst appendix and peritonitis and even then the surgeon didn't know 100%, for sure, what he would find.

I'm not excusing the nurse (NHS is not stupid, one of it's operatives was), but I wonder how much we can do in a situation where we are not happy with the diagnosis. We come to forums like this and although we may never become Professors at a university, we learn a hell of a lot about our own condition and probably a lot more than any DN.

If you were suspicious maybe you should have insisted on having a c-peptide test, that would have shown immediately that your pancreas was not producing insulin and therefore you WERE type I.

I hope things will continue improving.

 

[pav]

Good news that you finally have the correct diagnosis and you are getting the rights things in place. Lost count of the circles I have been going around in since the decent diabetic nurse left and been seen by non diabetic nurses and the last straw is the new DN is a I know it all type dictator and does not read patients notes.

 

[tomcamish]

@graj0 The problem is we're supposed to trust what they say. They're the ones with the degrees and training, they're the ones who should know what they're talking about. I don't know what a c-peptide test is let alone know I need one.

If i take my car in to a garage and they say it needs a new alternator, I'm not likely to say "are you sure it doesn't just need a new hub cap?" - they're the ones who should know what they're doing.

Unfortunately my wife and I have had numerous examples of these so-called professionals not knowing what they're on about. They sent our 18 month old son home from A&E after he had a fit with advice to give him calpol to bring his temperature down. They failed to notice the signs of meningitis and we lost him 12 hours later. With our 2nd son, they did the usual tests on a new born and because he didnt lift his head when they expected him to (he had just had milk and was sleepy) the pediatrician said he had neurological issues and needed further tests - scared the s**t out of us - only when we asked for a second opinion, by which time he was more awake, did he pass the test conducted by the pediatrician's senior who said he was fine. He's now 7 months old with no issues. When my wife was in hospital preparing for her c-section, as she had gestational diabetes they put her on a glucose drip - the needle became tissued and after an hour of agony in her arm, during which the midwife said it was normal, a 2nd midwife had a look and said it was put in wrong - spotted it straight away.

It may be individuals who let the NHS down, but the NHS as a whole aren't ensuring the care given to its patients meets the standards, and aren't ensuring its staff know what they're doing.

Don't even get me started on the doctor strikes!

 

[grovesy]

Good to hear you are getting the care you need.

 

[graj0]

The problem is we're supposed to trust what they say. They're the ones with the degrees and training, they're the ones who should know what they're talking about. I don't know what a c-peptide test is let alone know I need one.

They are the ones who are supposed to be the experts, I used to believe that and did exactly as I was told by all medics. Now I want to know what's going on and I have to tread very carefully not to come across as a know it all, because I'm not (if only). I try to work with my doctor, not against and they know I want to know what's going on. Even different medications I will google as soon as I am home.

As I mentioned, I don't think the nurses who get the responsibility of looking after diabetic patients have done anything above and beyond the Warwick Training program and may not have even done that. My DN has just agreed with my GP's advice a year ago to eat more, despite the fact that doing so (more cheese, yoghurt) has led to me gaining weight and my HbA1c has gone way over). Perhaps you should ask if any diabetic carers have their Certificate In Diabetic Care from Warwick University, perhaps I should ask mine as well. Now I've been looking at it, I wonder if anyone can try the online version of the course. https://www2.warwick.ac.uk/fac/med/study/cpd/diabetes/cidc/

If i take my car in to a garage and they say it needs a new alternator, I'm not likely to say "are you sure it doesn't just need a new hub cap?" - they're the ones who should know what they're doing.

That's because you know enough about cars and it is my opinion that most people using these forums will have read an awful lot about diabetes, not that it makes them experts, they will be well read.

You have obviously had bad experiences with the NHS and sadly there is nothing I can do to put that right.

I have said this several times on this forum. It is good that you can tell us your experiences so that we can be warned of the sort of things that can go wrong, but at the end of the day you have to make a formal complaint of somebody's incompetence if only to protect the rest of this from that person. It's no use saying this or that is wrong with the NHS without at least letting them know in writing.

 

[DaveB]

Hi. You are not alone. When I was obviously late onset T1 when all the tablets failed and being slim my 'expert' diabetes GP said you're not T1 therefore you are T2 - just like that. I challenged that and she said she had 500 diabetes patients so knew what she was talking about. I was refused insulin. A year later when my Hbai1c continued to rise she offered insulin. She thought going onto insulin might worry me, having forgotten I had seen her a year earlier and had asked for insulin. I'm still listed as T2 and can't be bothered to get it changed but I had a lovely DN to do my insulin and she put me straight onto Basal/Bolus with carb-counting. The mis-diagnosis of late onset T1 as T2 is a big problem. It's good you had the correct diagnosis officially recorded.

 

[SB2015]

I was fortunate that I was diagnosed with T1 very quickly, perhaps because I did not fit the image that the GP had of a T2. However since diagnosis, after an unfortunate mismatch between advise from the consultant and DSN at the hospital, and that given by my GP, I always take the advice of the specialists (those at the hospital) and avoid discussing my diabetes with the GP.

I did however go in, at his request, and do a training session for all the GPs at our practice on managing T1 with a pump, and had a useful Q and A time with them. There are only two of us at the practice who are on pumps, and not many on MDI so the GPS and nurses do not have a lot of experience to draw on.

I choose to get my annual tests done at the surgery and have a review, only so that I can get my feet checked. I also discuss with my GP any changes to other medications suggested by the consultant as I only see the hospital staff twice a year.

I feel I am in a good position to draw on the appropriate advice from the appropriate people as and when I need to. I certainly would not want to be without the hospital support and reliant on GPs