A diagnosis of diabetes

Status
Not open for further replies.
J

J M Hood

Member
Relationship to Diabetes
Type 2
For a Doctor to make a Diagnosis they need to give an opinion and a justification. Initial symptoms for diabetes are extreme thirst and frequent need for urination. Doctor will usually test urine for sugar and follow up with blood test. Once diabetes established patient will have 2 six monthly interviews with blood tests. Classification of Type 1or 2 diabetes depends on well established factors. I was diagnosed as a type 2 diabetic in 1990. In 2015 I was reclassified as a type 1 diabetic. My GP initially said this was impossible but refused to obtain a justification from my Hospital Consultant. I was therefore treated as a Type 1 diabetic for 5 years. My treatment didn't work. I obtained my medical notes and found that a clerical error was made in 2015 when a 1 was but in my notes instead of a 2. I discovered that the same mistake had been made several times in the past but the error had been identified and rectified. Having obtained the evidence that a mistake was made in 2015 I believed that it would be easy to notify the authorities and be reestablished as a type 2 diabetic. This was a false belief. What happened was that the NHS GGC Board refused to acknowledge the evidence. The NHS complaints dept. the NHS Information Governance Dept, Consultants, My GP, Information Commissioners and the Ombudsman refused to acknowledge the evidence. C-peptide tests done in 2021 proved I am a type 2 diabetic. The diabetic records are currently kept in Sci-diabetes information retrieval systems based in Dundee. The Consultants diagnosis (either continuing or new) is contained in his summary statement at the start of this document. This document is sent to your GP for scrutiny. Patients will not see this document unless you request your medical records. After six months the Consultant summary is restricted to the archives. Consultants have then no way of knowing that a mistake was made. The mistake becomes a medical fact and you then are mistreated indefinitely. Likely outcome uncontrolled high risk sugar levels. Complications and possible death. I stress that you seek a justification to your satisfaction for all your diagnoses either past, present and future. At the moment I have appealed the Ombudsman's original decision and I am awaiting on their next verdict. I am preparing for a Judicial Review.
 
Here’s your earlier thread on this @J M Hood

https://forum.diabetes.org.uk/boards/threads/misdiagnosed-due-to-a-clerical-error.96344/

I admit I don’t fully understand why your GP couldn’t have just corrected the error. Was the error in the consultant’s letter? Was it on your GP notes? And why didn’t the insulin work?

Sorry - a few questions there but it would be helpful to hear a little more from you. What meds are you on now? Is your diabetes satisfactorily controlled?
 
Welcome back @J M Hood

An intriguing case.

What medications (if any) were you on between 1990 and 2015? Can you remember the results of any HbA1c checks during that time?

And how did your treatment change when you were classified as T1 from 2015-2020? How did your HbA1c results compare?
 
Reply to DW. GP didn't want to get involved. Remember for type 1 diabetes Consultants manage that type of diabetes. Why my GP didn't ask for a justification for my reclassification especially as she initially said that it was impossible for a type 2 diabetic to become a type 1 is beyond me !. Error was contained in Sci Diabetes report of 2015. Practice Nurse transferred the error to practice notes without scrutiny.. If GP read (unlikely) the Sci diabetes report she missed the error. With regards to why the insulin didn't work when I was a falsely classified as a type 1 was because I was on a carb counting regimen (novorapid insulin). I was constantly in high risk category. I was prescribed Humulus M3 as soon as I was reinstated as a type 2 diabetic. Consultants wouldn't believe that a clerical error had been made. They continue to ignore the evidence in the Document even after the C peptide tesrs carried out in 2021 proved I was and always have been a type 2. The Consultant who made the original clerical error lied to cover up his mistake.
 
I don’t really understand your post or your question.

Insulin regime with carb counting works just as well for T2 as for T1, so long as you’ve calibrated your ratios correctly. I’m T2 and that’s exactly the system I use.
 
Who is DW @J M Hood ? I’m a bit confused too. I was one of the people who asked you some questions on your previous thread.

To reply to someone, you don’t need to start a new thread. Just open your current thread (above). You can then either click the word “Reply” bottom right corner of the post you want to reply to, or you can scroll down to the bottom where there’s a blank text box, type your message and press the blue Reply button underneath the text box. This is how I’m replying to you.

As @Lucyr says, insulin should have worked for you if you were given the correct type(s) of insulin and used the appropriate amount for you.

I’m not sure how far your complaint has got, but focussing on the misrecording of your diabetes type would probably be simplest. Sometimes too much detail can distract focus from the error.

Do keep us updated. Hopefully a moderator will merge your two threads.
 
Last edited by a moderator:
Inka said:
Hopefully a moderator will merge your two threads.
Click to expand...

I have merged the two recent threads together. Hopefully this will keep the conversation together.

Carb counting should have worked well for you @J M Hood. We have several T2 members on insulin who have opted for basal:bolus / MDI as it’s more flexible once you have got the doses properly titrated - it's a shame you weren’t better supported to adjust your doses :(

Perhaps your doses were too conservative in the beginning, and adjustments were not made to account for your insulin resistance.

It is very unusual for them not to have been updated at your annual reviews during the 5 years you were classified T1 :(

It sounds as though you are in the process of an official complaint? What would be the ideal outcome health-wise from your perspective?
 
Last edited:
everydayupsanddowns said:
I have merged the two recent threads together. Hopefully this will keep the conversation together.

Carb counting should have worked well for you @J M Hood. We have several T2 members on insulin who have opted for basal:bolus / MDI as it’s more flexible once you have got the doses properly titrated - it's a shame you weren’t better supported to adjust your doses :(

Perhaps your doses were too conservative in the beginning, and adjustments were not made to account for your insulin resistance.

It is very unusual for them not to have been updated at your annual reviews during the 5 years you were classified T1 :(

It sounds as though you are in the process of an official complaint? What would be the ideal outcome health-wise from your perspective?
Click to expand...
Adjusting of insulin dose when I was falsely categorized as type 1 did not work. Consultants referred me to Nurses. Typical comment from Nurses "I hate difficult cases" or "I don't know what to do". I was constantly in high risk category for the five years as type 1. For 5 years (10 reviews) not one Consultant questioned the reclassification made in 2015. Unusual or incompetent? Since reclassification (without carb counting) my Hb1 have fallen to low/medium risk. I made an official complaint in 2019. The complaint now concentrates on the Boards refusal to give a justification for my reclassification in 2015 and their attempt to cover up the error. With regards to conservative dose at the beginning you would need to ask clinicians!
 
Hope you get a satisfactory outcome @J M Hood

Interesting that a mixed (Human) Humulin M3 from Eli Lilley works so well for you, while the more modern (Analogue) NovoRapid from Novo Nordisk didn’t seem to suit you at all.

Which basal insulin were you taking alongside the NovoRapid?

Did you have the opportunity to try either Humalog (Eli Lilley’s equivalent of NovoRapid) or ActRapid (a human insulin predecessor of NR)? Just wondering whether they experimented with different insulins - some formulations just don’t suit some people.

Sounds like you foxed the clinic good and proper!
 
Will just have to wait and see what the outcome is. I was on Novo rapid and levemir till 2018 then novo rapid replaced with Fiasp. As this didn't work the Consultant suggested going back to the insulin I was on before being falsely reclassified, as this worked. However this suggestion was not followed up. You might have thought that this suggestion would evoke the possibility that the reclassification was wrong. I would have thought at this point the reclassification would have been investigated. My GP repeatedly refused to get a justification for my reclassification during this period. You should be aware that my diabetic history was also changed; to say that I had been a type 1 diabetic since 1990, which is also false. I was a type 2 diabetic from 1990 till the clerical error in 2015. MDMW and Sci-diabetes refused to alter the false data in their records, MDMW said only Consultants can change health records. Unfortunately my consultants refused to refer to the evidence that proved that a clerical error had been made. The Consultants refused to alter the false entries. The NHS Information Governance Dept refused to even acknowledge the evidence that proved that a mistake was made in 2015. I had to go to another hospital to confirm that I was a type 2 diabetic.
 
J M Hood said:
Will just have to wait and see what the outcome is. I was on Novo rapid and levemir till 2018 then novo rapid replaced with Fiasp. As this didn't work the Consultant suggested going back to the insulin I was on before being falsely reclassified, as this worked. However this suggestion was not followed up. You might have thought that this suggestion would evoke the possibility that the reclassification was wrong. I would have thought at this point the reclassification would have been investigated. My GP repeatedly refused to get a justification for my reclassification during this period. You should be aware that my diabetic history was also changed; to say that I had been a type 1 diabetic since 1990, which is also false. I was a type 2 diabetic from 1990 till the clerical error in 2015. MDMW and Sci-diabetes refused to alter the false data in their records, MDMW said only Consultants can change health records. Unfortunately my consultants refused to refer to the evidence that proved that a clerical error had been made. The Consultants refused to alter the false entries. The NHS Information Governance Dept refused to even acknowledge the evidence that proved that a mistake was made in 2015. I had to go to another hospital to confirm that I was a type 2 diabetic.
Click to expand...
 
For those not familiar with Sci Diabetes, it is an information retrieval system used by Hospital Consultants and Gp's. If you have a six monthly review the Consultant updates information obtained at that review and also makes a Summary of the review. The resulting document is sent to your Gp. What can go wrong ? Well in my case the Consultant in 2015 mistakenly put a 1 in the tick box instead of a 2. I found this out from my medical records which are available by Right. I also found out from my records that this clerical error had happened several times in the past but had always been corrected by the next review. On this occasion the error was not spotted and I was then reclassified as a type 1 diabetic after 25 years as a type 2 diabetic. I was then treated mistakenly as a type 1 diabetic for the next 5 years. Armed with the evidence that a clerical error occurred I thought that I could easily rectify the situation but the GGC NHS Health Board said I had been deliberately reclassified as a type 1 diabetic in 2015 but could present no evidence to support their claim. I presented the only evidence that proved they where wrong but the Board refused to acknowledge it. They refused to acknowledge the mistake even after one of their Consultants agreed with me that the change in classification in 2015 was an error and not a re-diagnosis. Two c-peptide test were organized by the Consultant due to the obvious error made in 2015. Both tests confirmed that I was a type 2 diabetic. Unfortunately this information was ignored by the Ombudsman and the Board and my diabetic record now says I was a type 2 diabetic for 25 years, and then became a type 1 diabetic from 2015 to 2021. I then reverted back to a type 2 diabetic in 2021. The Board by their refusal to admit there was an error in 2015 have created in me a medical miracle. The Board without any supporting evidence (the Ombudsman agreed on this point) managed to convince the Ombudsman reviewer that I was deliberately re-diagnosed in 2015. The Ombudsman very unconvincingly dismissed the only hard evidence that proved my case. At this point I would like to share with you the contents of the Dr’s Summary of 2015. He says "I reviewed this gentleman today at the diabetic clinic. he is keeping well and really has just about acceptable glycaemic control without any significant problems with hypoglycaemia. He has had diabetes now for 25 years and really doesn't have any significant microvascular complications. I think on balance the best thing to do is just continue with his current regimen." The fact that I had been a Type 2 for 25 years was never seriously questioned by the Board nor the Ombudsman. The reference to continuing with the current regimen can only refer to my 25 years as a type 2. Nothing else makes any sense. The Ombudsman dismissed my complaint on the basis that the Dr never actually said that I had been a type 2 diabetic for 25 years. The Ombudsman reviewer actually says; "The letter sent by the Consultant to my GP, does not specifically say the Consultant considered I was a type 2 diabetic. This is true but the fact of the matter is that he had no need to mention diabetic type as I had been a type 2 for 25 years. What is of fundamental significance is that the consultant does not mention anything about the need for a reclassification. There is not one reference to type 1 in his whole summary. For a diagnoses a Doctor needs to give an opinion and a justification. There is none in the review. What do you think ? I would be grateful for your opinions ! Advice- Avoid the Ombudsman at all costs. They say my only course of action is to go for a Judicial Review. What they don't say it will cost thousands of pounds with no guarantee you would get your money back even if you win. Justice I don't think so.
 
Last edited by a moderator:
Hi.
I remember that you have posted about this before (Edited to add..... now merged with older threads above) . Can you just clarify how old you were when you were diagnosed and what the symptoms were than led to your diagnosis and also what treatment regime you are using to manage your diabetes?
Are you using insulin or just oral medication or perhaps just diet and exercise?

Many people here on the forum were misdiagnosed as Type 2 and have had to battle to get a correct Type 1 diagnosis so it is quite unusual to read of someone complaining it has happened the other way round to them.
Is it possible that you were misdiagnosed initially like the rest of us and at some point a consultant realised the mistake. You mention C-peptide tests but you don't say what they were (urine or blood) and what the results were. C-peptide is only one part of the testing for Type 1, as it just indicates how much insulin your pancreas is still producing. You could be Type 2 and have a low C-peptide, especially after 25years and still be Type 2. A GAD antibody test is the other Type 1 test which usually helps to confirm Type 1 along with C-peptide but neither test is definitive and the results need to be assessed together with clinical presentation.

Is there a particular reason why the Type 1 label causes you so much upset. Generally Type 1 diabetics get better support and access to technology and there is less "stigma" (although there should not be any stigma regardless) associated with it, so I am not entirely sure what the drawback would be in being mislabeled Type 1 and there could in fact be some benefits.

You detail so much information about your battle to get this situation rectified but you don't give any specific information about your actual diabetes treatment which is very relevant. Doctors get it wrong sometimes, whether that is in the first instance 25 years ago or just 5 years ago. The important thing is that you get appropriate treatment to help you manage your diabetes rather than the label, but a Type 1 diagnosis opens doors to technology and education and support than many Type 2 diabetics here would not be complaining about.... For instance, some Type 2 diabetics here on the forum self fund Freestyle Libre sensors @£100 a month cost when many Type 1s get them on prescription. That is a huge financial advantage, but the data from the Libre also improves their diabetes management and therefore their health, so well worth it if you can afford it.... but far better to have it free on the NHS.
 
Last edited:
Rebrascora here is my reply. 38 years old when first diagnosed. Symptoms- Peeing and thirst not obese.GP recognized did blood test. Surgery to clinic. Today Insulin Humulus M3, Metformin. 1990 diagnosed, treatment diet exercise, Then Tablets, Then Insulin and tablets. All short periods quickly on to injections.
"Unusual diagnoses" You need to read my thread again. I was not diagnosed as a type 1 in 2015 it was a clerical error.
In 2018 a blood test was carried out and a c-peptide was made for research purpose. None of the necessary preparations where made so it is not surprising that a false negative result occurred. This test was done 3 years after the clerical error reclassification and has no bearing on the mistake of 2015. A clinical presentation wasn't done in 2015 because there was no diagnoses made, it was a clerical error !.
Due to this clerical error my GPs records, MDMW, Sci diabetes, Hospital records and Hospital Consultants started to report that I had been a type 1 diabetic for 25 years. This was wrong. I don't know if you just accept things that are not true but I don't. When the establishment try to cover up their mistakes with lies and deceit it should make you angry not depressed.
There was no benefits from being wrongly classified as a type 1 diabetic. The treatment didn't work. I was in high risk category for all of the time I was treated as a type 1. The consultants eventually realized this and even suggested going back to what worked i;e. Stay classified as a type 1 but revamp my treatment back to when I was a type 2. I then left the diabetic team at the hospital as they where obviously incompetent and used unsafe practices i;e I was given a insulin (pen by a nurse) with an unsheathed needle in situ. I have no way of knowing if the pen and needle had been used, but you have to assume it had been used. I complained to the Board but they said it didn't and couldn't have happened. So I must have imagined or lied about the incident. I proved that it did happen but they refused to answer.
Yes Doctors do get it wrong. But they should admit their mistakes, not try to cover them up. If I was better treated as a misclassified diabetic then why should they all lie about the 2015 clerical error ?
With regards to Freestyle Libre I tried it out. After the trial no one approached me about a full time application. The subject was just dropped. I hope you are not an agent for Freestyle by any chance?
I hope this answers all your questions.
 
Last edited by a moderator:
I too dislike it when things (and people) are wrong, However, I have neither the energy or time to correct every wrong and realise that in doing so (or fighting it) on medical notation time and money are spent by the NHS who are severely under-resourced. For this reason, I pick my battles.
Therefore, I agree with @rebrascora that I would take advantage of a mistyped "1" and take the additional benefits available unless my moral compass felt it was dishonest and taking away resources from other more in need.

In your position, I would ask myself what I hope to achieve by correcting this wrong? Reading through your previous posts, I do not see how it was the cause of the lack of support for your treatment - you were prescribed basal-bolus insulin regime which is preferred by most people on insulin as it provides far more flexibility than fixed doses. Maybe you were not provided the training required to adjust your doses to best manage your diabetes (yes, we have to manage our own conditions rather than taking a simple pill every day). From my understanding, you would be more likely to get this training with a Type 1 diagnosis than with type 2.

What would the correction of your records achieve for yourself or for others who may experience the same in the future?
 
Hi and thanks for that detailed response.

What I am suggesting is that it is highly likely you were misdiagnosed in the first place in 1990. The fact that you weren't obese, relatively young at 38yrs and had classic very high BG symptoms of thirst and urinating suggest Type 1, especially as you went on to needing insulin after a short space of time managing things with diet and then oral meds. This is a route many of us who were misdiagnosed went through and is more common with people who are diagnosed with Type 1 later in life. Did it not seem odd to you that you were diagnosed Type 2 when you weren't overweight? There is no specific test which identifies you as Type 2. Diagnosis is based on clinical presentation and it sounds like you didn't present as a typical Type 2 diabetic, but perhaps your GP was under the impression (as many are) that Type 1 only exhibits in children and young adults, so assumed you were Type 2 because you were more mature. It is a common mistake that many of us experienced. I think there are probably quite a significant number of diabetics out there who are diagnosed insulin dependent Type 2 (particularly those who are not significantly overweight) who are actually Type 1 but just never got the C-peptide and GAD antibody tests, or the tests were not done under the correct procedures.

The type of insulin used to treat you is immaterial. M3 can be used to treat Type 1 or Type 2 and so can multiple daily injections (basal/bolus insulin system) although the latter is preferable for most people as it allows them more flexibility in their diet and lifestyle. It is how you use these insulins which is important and having the right support and education program to understand how they work to find the right balance for your body..... which it seems sadly didn't happen in your case, which is why you were "high risk" as you put it whilst you were using a basal bolus system... It was because the doses were not adjusted correctly for your body and your lifestyle. I wonder if you being so concerned about your diabetes classification being changed that you didn't fully embrace the new insulin regime.

Personally, from the information you have provided, I think it is likely that the consultant, was probably correcting a mistake made 25 years earlier in that you should have been originally diagnosed Type 1 in the first instance. I think it is a terrible shame that you have spent so much time and effort (and money by the sound of it) complaining about this and quite possibly getting stressed about it when it may just be a question of you not fully understanding the facts or having things explained to you well enough.

No I am certainly not an agent for Libre but it has been a game changer for me as regards my diabetes management as most other people here have also found, but it does have it reliability faults and limitations. If you are on a mixed insulin then I think you might not be eligible but as a Type 1, the new NICE guidelines suggest you should be offered it on prescription.
 
Last edited by a moderator:
Regardless of actual diabetes type, if you need insulin then it's way better to be classed as type 1, since type 1 have a higher chance of access to a wider range of technology and education than type 2. Whatever your diabetes type, whether there's a 1 or 2 on paper hasn't affected your treatment negatively since all insulins can be used on either type so i can't really see what you're complaint is hoping to achieve. Sounds like you're wasting energy, time, and money for no reason.
 
There’s a bit of duplication in your threads @J M Hood so I’ve merged the two most recent versions to keep your replies together.

Sorry that you have had such a tricky experience with your diabetes. I hope you find a way to move past it now the error has been corrected.

How is your diabetes management going?
 
helli said:
I too dislike it when things (and people) are wrong, However, I have neither the energy or time to correct every wrong and realise that in doing so (or fighting it) on medical notation time and money are spent by the NHS who are severely under-resourced. For this reason, I pick my battles.
Therefore, I agree with @rebrascora that I would take advantage of a mistyped "1" and take the additional benefits available unless my moral compass felt it was dishonest and taking away resources from other more in need.

In your position, I would ask myself what I hope to achieve by correcting this wrong? Reading through your previous posts, I do not see how it was the cause of the lack of support for your treatment - you were prescribed basal-bolus insulin regime which is preferred by most people on insulin as it provides far more flexibility than fixed doses. Maybe you were not provided the training required to adjust your doses to best manage your diabetes (yes, we have to manage our own conditions rather than taking a simple pill every day). From my understanding, you would be more likely to get this training with a Type 1 diagnosis than with type 2.

What would the correction of your records achieve for yourself or for others who may experience the same in the future?
Click to expand...
I am sorry you have neither the the energy or time to correct every wrong. Neither have I. But I will try to correct a wrong when it directly affects my health. Maybe you imply that my wrong is trivial. If you are, my recent heart attack suggests otherwise. With regards to your suggestion that I am wasting NHS resources I would point out that It was the Consultants within the QE diabetic department that refused to admit a clerical error occurred in 2015, and tried to cover it up by lies and deceit. It was their choice to waste resources. Do you know they employ a full time Ombudsman liaison Officer within the GGC Complaints Dept ? She is there to cover up mistakes and save money, not to uncover the truth.
Maybe you think that seeking the truth is not worth the time and effort, but I do.
Was the error in my classification to my benefit ? The answer is no. It is folly to think it would. It is a false assumption to think Type 1 diabetes get better treatment than type 2 diabetics. I don't know were this assumption started, but if a type 2 diabetic was falsely classified as a type 1 it would be seriously flawed to expect his diabetes to improve. If being classified as a type 1, when your really a type 2, improved your health why aren't all diabetes classified as type 1 ?
You say whats the point. When a Consultant says I have been a type 1 diabetic for 25 years when in reality i have been a type 2 for 25 years is it not self evident what the point is ?
Thank you for your advice about self management. Maybe you missed my 25 years as a Type 2 diabetic and my 5 years as a type 1, and maybe you missed my reclassification as a type 2 diabetic in 2021. I would advise you to read my threads.
I think you have totally missed my point. It was not the fact that a consultant (or his secretary) put a 1 were a 2 should have gone it is the fact that Health Professionals conspired together with lies and deceit in an attempt to cover up the fact that a simple clerical error (although it resulted in 5 years of mistreatment) had occurred in 2015.
i repeat that I am sorry you think my complaint trivial, and that you only have time to fight important battles. However in a world full of lies and deceit I would rather fight this than let it meekly pass unchallenged.
 
Status
Not open for further replies.
Back
Top