Rant...Information not always shared with the patient

[RichardNY]

Well what a very surreal day/experience …

I’ve tried to compose myself and come to grips with information I am just finding out(today). Some of you may know I have recently been diagnosed with peripheral vascular disease. My cardiologist was the one to point me back to my GP for further investigations.

I have also been having further cardiac testing.

My old records from Hospital ‘A’ had to be requested by my new Hospital ‘B’ and have only just arrived. I was informed today that as far back as 1995 I have had consistently high sugar readings and that contrary to what I have been previously told I have “in all likely hood” been diabetic for a substantial number of years and that I have been lucky to get away for so long without any major events. (I have been officially diagnosed for 1 year, but accepted the fact that I had been undiagnosed for a good number of years …but a minimum of 15 ?!?!?)

My previous Cardiologist (Hospital ‘A’) insisted that my arrhythmias that I suffered were of a benign nature(of an Autonomic Origin), my new cardiologist simply cannot believe I was not made aware of my sugar levels and the interplay between them and certain arrhythmias and heart disease. He almost didn’t believe me that I simply wasn’t told until I said to phone my GP and ask them when I was diagnosed! I also pointed out that the lack of medication from the previous Cardiologist should also indicate that I was not made aware and was considered low risk, that seemed to drive home and vindicate the fact I simply was not made aware of high sugars back then.

I get to find out just what has happened and is about to happen in a few weeks time at consultation. The new Cardiologist says that this will change a lot of the aspects of treatment and unfortunately brings me into a high risk grouping that is no longer considered ‘benign’. Because of worsening symptoms and the appearance of PVD investigation for CAD is now something that has to be taken into consideration.

There are a lot of things running through my mind at the moment but the overwhelming question is why wasn’t I told about my high sugars back in 1995, why didn’t my GP’s at the time make me aware of this … were they even told? Are hospital records and GP records held on different systems ? Is there indeed a definitive unified patient record or are the records just local to the practitioner you go to for a consultation ?

How many others suffer this kind of health ‘management’ ?
Just how good is the detection for diabetics ?

What my wife has pointed out to me has me extremely worried. My current GP that ordered the Oral Glucose Tolerance Test was the one to point out my 6-7mmol/L fasting blood tests from my previous GP Practice that I switched from a number of years ago. This to our recollection was the first blood test performed at the new practice. He informed me that it was wise to perform the OGT given the higher than average fasting results. As a result I was diagnosed as diabetic.

I really hope this is not down to some GP/Cardiologists interpreting the numbers as nothing to worry about without informing the patient because at the moment that’s exactly what it’s looking like.

I really am lost at the moment as to what to do/think. At the moment I have no choice to wait for the consultation and listen to what has to be done. I guess I should be thankful that my new Cardiologist is aware, vigilant and good at what they do, but boy I could do with hearing some good news for a change.

I find it so frustrating that at the time you most need to be helped because your ill you have to become your own best health advocate and to be your best health advocate you have to be fit and healthy as well as understand the ‘systems’ referrals and specialist areas of investigations that you will need.

Just really needed to vent folks.

All the best.

Richard.

 

[jopar]

No need to feel sorry for the vent/rant, more than understandable...

Yes your hospital records are sperate from your GP records, however saying that every time you have an specialist appointment or test, hospital stay etc, a letter goes to your GP containing a brief, all test results changes or attention to medications etc...

You are now intitled to have a copy of this letter sent to you as well, all you need do it inform your consultant/hospital clinc that this is your wish...

As to the rights and wrongs, well it's only your consultant at hospital 'A' can really anwser/explain his treatment plan... Your new consultants opinion may differ to that of your first consultant but what matters now, is that you seem to have found a consultant that you are building a very good working relationship with this will benefit your health no ends...

 

[Hobs]

Richard, you are not alone in the way you have been poorly treated. I too was told for many years before final diagnosis that I was pre diabetic and I was given absolutely no advice or even had it explained to me what it all meant.
It was only when I changed my address (and county) did I arrive at a Dr's where more notice as a patient was taken of me. The first batch of 'new patient' tests came back and I was called straight back for a fasting glucose test ... all of a sudden I was diabetic and at a level that the GP bluntly told me I must have been that way for some considerable time before. Likewise the new cardiologist at my new hospital was more on-the-ball and I received better care, but within a short time an arrhythmia I had noticed before, but as it was fairly short lived and only at night, I had ignored, became more prevalent and I had a bout long enough for it to be recorded on the ECG graph. I was diagnosed with AF and told it was highly likely due to high BG's over a sustained period.
I now treat my diabetes the way it should be treated and within a short time (and with Sotalol) the AF has not been a bother. I did have a dose of AF some months ago when I let my guard down and enjoyed too much party food, which definately proved to me my particular AF is brought on by high BG values.

Since the above, I have been injecting Victoza and it not only gives me excellent BG results, but it has also lowered a stubborn high systolic BP and also given me a completely normal ECG trace at the cardiology clinic. My specialist was so pleased with my last two visits he has increased my appointment attendance to twice the period.

As a footnote, I was told that my previous GP was probably working to old parameters and the nurse at the new GP was then working to new guidelines and was 'finding' far more diabetics that previously .. I was finally diagnosed at the end of last century :? and SO glad I moved county when I did

It souds like you have at last found a medic who is serving you better and I hope this continues and you get the answers that you are looking for.

 

[badmedisin]

That's awful! Can't believe they would be so negligent.
Definitely request copies of any correspondence. I accidentally saw a couple of letter from consultants to my gp and I was outraged. They'd basically gone behind my back to insult me in letter format. One said I had psychological problems because I'm grossed out by the concept of insulin pumps! The data protection act says that info held about you must be accurate and fair, and these letters were neither.

They are just starting to bring in a unified system of info sharing, which will be nice if they learn to use it properly. But I've had consultants at the same hospital I usually go to, express surprise when I said I was diabetic. I want to get my file and write 'type 1 diabetic' in giant red letters on every page. Never occurs to them there's a reason my file is 6 inches thick. So it will largely depend on doctors actually bothering to read your notes.

You can request a copy of all your records under the data protection act. They're allowed to charge up to £10 for it, but it might be worth doing so you can see if there's anything else they really should have told you.

 

[Synonym]

How many others suffer this kind of health ‘management’ ?
Me too! As a result I had some strokes and other health issues.

Just how good is the detection for diabetics ?
I don't think that detection is a priority until a health issue actually needs treating as otherwise it would cost the surgery money.

I find it so frustrating that at the time you most need to be helped because your ill you have to become your own best health advocate and to be your best health advocate you have to be fit and healthy as well as understand the ‘systems’ referrals and specialist areas of investigations that you will need.
Perhaps that is part of the reasoning behind non-diagnosing because of the cost implications as you do not have the energy to devote to complaints! :roll:

Just really needed to vent folks.

All the best.

Richard.

 

[WKD]

I saw my file at one of the hospitals I attend and it was huge about 8 inches I hate to see the ones at the other 2 hospitals where I had surgery
I got the pictures they took from one hospital on a cd for £10 and woz told it would cost upto £50 to see my records at one of the other hospitals it depended what was on paper and what was on computer seeing my file at one hospital and seeing they dont seem to have the same information at all the hospitals I have been in (total 3) I dont think it seems fair to pay £50
Id love to see my files as it may explain why I get treated so badly when I am in hospital :shock:

It was also a practice nurse who picked up the fact I may have diabetes and sent me for the blood test and it was the nurse who got me an emergency admittance at the hospital when I went to see her after the blood test confirmed it, she was expecting me to be type 2 because of my age but to her surprise when she tested my blood it was 31 and got on the phone straight away.

Thing is I had to beg my GP a few years before to test my thyroid which came back as under active and I was diagnosed with ceoliac at the same time. My consultant said it was auto-immune disease and diabetes would no doubt follow, if I had been diagnosed the years I had been begging for my thyroid to be checked (as it runs in the family) would I have ended up with diabetes if the other 2 had been treated earlier :?: makes ya wonder :shock:

 

[dorjac]

Looking at these posts it seems to revolve around the changing parameters that doctors are supposed to pick up on as they occure. Unfortunately there is a time lag between the research....like large cohort studies and take up by most Gps. Even short papers on an aspect of a condition can be illuminating....but who reads them?. Look at how long they have to bang the drum about MMR before take up starts to improve. If there is a claim/court case with blame attached, the date at which a new procedure or protocol becomes fixed is/was very very very fuzzy and can lead to expensive arguments against the NHS by a tribe of 'experts'. I have only just come onto this wedsite and find that there are nearly as many opinions as posters.......otherwise it would be boring in the extreme. Coming from a midwifery background I know only too well the court arguments about when breech delivery should have been done by CS.....an absolute classic. Most of my colleagues who continued after I retired, in 1992, were involved in court cases after I finished. The blame culture roared ahead. I could be cited even into my eighties!!!!!!!!

 

[Richard.E.Craig]

Dear Richard, I am so-not surprised by your experience. I once took a serious pain in my arm one morning but still decided to drive to work. As the morning progressed my symptoms got worse and my wife came to my work and took me to casualty were I was investigated and informed that I had probably been sleeping on my arm! The pain persisted for months.
Two years later as I was going for a colonoscopy a nurse was reviewing my notes and asked me had I had a full recovery from my stroke !!!!! I had been sent home with a stroke and a tube of cuprofen gel !!!!! I have no trust whatsoever in NHS hospitals. My 63 year-old mother bled to-death in a cardiac ward after a botched angiogram. My brother,myself and my father waited all night with our mother for blood to come to the ward. Twenty hours after my mothers bleed was diagnosed the blood came; she died five minuets later. We later discovered that my mother had received three injected doses of diclofenac which contributed to her death. I can only say to the doctors and nurses on that ward [ Comment removed. Forum policy ]

 

[Sid Bonkers]

What my wife has pointed out to me has me extremely worried. My current GP that ordered the Oral Glucose Tolerance Test was the one to point out my 6-7mmol/L fasting blood tests from my previous GP Practice that I switched from a number of years ago. This to our recollection was the first blood test performed at the new practice. He informed me that it was wise to perform the OGT given the higher than average fasting results. As a result I was diagnosed as diabetic.

Sorry to hear you are going throught it at the moment but I always thought that until recently any reading under 7.5% was considered non diabetic and that the figure had just been reduced to 7% which could be the reason your new doctor has arranged a GTT. If I am correct then I dont see any malpractice just doctors following current thinking.

http://www.patient.co.uk/doctor/Glucose ... -Tests.htm

It's NICE who set these cut off levels not our GP's or consultants.


Edit: sorry didnt see this thread was so old

 

[phoenix]

Sid is right from 1985-1999 the World Health organisation level for diagnosing diabetes was a fasting level of 7.8mmol/l (or over 11 at 2 hours on an OGTT), below this was considered to be a normal fasting glucose. There was no level, so no specific diagnosis of impaired fasting glucose. It was only later that the significance of this became clearer.
In 1999 the fasting level for a diagnosis of diabetes was lowered to 7mmol/l or above and at the same time they introduced the category of impaired fasting glycemia for levels beween 6.1 and 6,9mmol/l. In the US (but not elsewhere) this level was further reduced to 5.5-6.9mmol in 2003.

 

[CeeCee59]

My experience has been that even if you have some indicators of being at higher rish these aren't always taken into account. Twenty or so years ago, I was finally diagnosed with Polycystic Ovarian Syndrome which is sometimes related to diabetes. Not receiving any treatment at all for the PCOS since, in my doctors words, I'm no longer trying to get pregnant so there's no need. :? Then about 6 years ago my BP was so high that I was finally put on meds which didn't work until about a year ago when my doc went on holidays and I had to get a renewal prescription so saw a locum that was temporarily replacing him. She added another BP med which has finally brought down my BP to acceptable levels. She also reviewed blood tests that I had had over the past two years or so - which had included fasting blood glucose tolerance tests - and the past four tests had come back at 7.1 (consistent at least!). Based on these tests, she declared that I was pre-diabetic so was sent off to a diabetic clinic which, after looking at my records, indicated that I was actually within the diabetic range, not pre-diabetes. So thanks to this forum, I went back to my doc and asked for the HbA1c test. I mentioned that since I had PCOS could this be linked - he was completely surprised that I had this condition even though he was the one who sent me to a specialist for the diagnosis! Only because I know the tech at the lab do I know that the result of that test was 7.3 - still haven't heard from my doc (the test was done six weeks ago). Managing on diet alone but now wondering if I should go back and see if the 7.3 reading indicates that going on metformin may be necessary.

Sorry to add to your vent - but after reading it, it made me want to vent myself.

 

[ailz]

I was in hospital in 2005 - after being told the pain in my back was fibro for 10 years I was taken in as an emergency and discovered to have a gangrenous gall bladder, not fun - and was told off by a consultant - not even the one I was under - for reading my notes which had been left at the bottom of my bed. I was told that they were nothing to do with me. Unfortunately, being quite poorly at the time, I let him get away with it, but I wish I had taken the opportunity to tell him what I thought.