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Confusion Regarding Being Diagnosed Diabetic

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desperate_dave

Well-Known Member
Messages
49
Okay, just to explain the story behind my confusion, four years ago I went to see my GP because I was sleeping all the time and generally feeling very lethargic, and having to get up four or five times during the night to urinate. At the time I was 51 years old and I asked my doctor if I could have tests done to see if I had diabetes. He arranged for me to have the necessary blood tests, which came back negative. He arranged for me to have the tests done again and they also came back negative. My doctor suggested I leave it for a month or two before making an appointment to have the tests done again. Being a typical bloke, I didn’t bother, in fact I didn’t go back to my doctor’s for another fifteen months. I guess I’d resigned myself to the fact if I didn’t have diabetes I would just have to learn to live with the inconvenience of the frequent visits to the toilet.

It was exactly a year and three months later that I received a phone call from my GP’s surgery requesting me to make an appointment to see the practice nurse. It was during this visit to see the nurse she asked me a rather peculiar question. She asked me why I wasn’t on medication for my diabetes! I told her I didn’t have diabetes because two separate blood tests I had the previous year had come back negative. She then said my records had been updated in February and stated I had Type 2 Diabetes. I told her this was news to me because I hadn’t been to the doctor’s in fifteen months. She promised she would look into it, but she never did.

Now, here’s the weird part. She arranged for me to have the blood tests done again, and guess what… This time they came back showing that I do have Type 2 Diabetes! This however still doesn’t explain why my medical records were updated before this had been established.

I’m seriously thinking of lodging a formal complaint with the PCT to find out who was responsible for updating my records. The only problem is that two years have passed since being diagnosed with Type 2 Diabetes and I don’t know if there is a time limit on making complaints to the PCT.

Any advice on this would be greatly appreciated.

Dave
 
Dave, your priority is getting to grips with your blood sugar and lowering it and getting some clarity on what support and monitorring you will get to bring you blood sugar under your control. You will notice all kinds of improvements in your health when that happens :D

Welcome to the forums, take a look around and ask lots of questions - the support is great and people here are very knowledgable.

Regarding making a complaint, I think you have 3 options.

Your first option is to make contact with the Practice Manager at your surgery and ask him/her to help you out with this. Practice Managers are wonderful people and work very hard to solve any problems that arise. I find them really really helpful :D and a Practice Manager is always my first point of contact when I'm not sure what I need to do to solve a problem.

If you get nowhere with the Practice Manager, you can ask PALS (Patient Advice and Liaison Service) to invstigate this for you to find out what happened. You can contact them through your local hospital. They will help to sort out any problems with health care in hospital or in the community but won't help you to make a complaint.

If you want to make a complaint you need to check the web page of your local PCT and follow the procedures - if you can't find them, write to the Chief Executive.

In my experience (not because I'm a big complainer but because I work with medical people) trying to sort something out with the surgery is the best and least confrontational approach.

Having said that I'm not a complainer, I have used both the PALS system and the local hospital/PCT complaints procedure in the last year regarding problems with a relative's healthcare.

PALS works to smooth out any wrinkles in the system and make things happen quickly for the benefit of the patient (or carer). The issue I took to PALS got a positive result inside 24 hours. The complaints procedure (which I used twice) took the best part of 2 months before I got a defensive answer that didn't really satisfy me :? even when they admitted they were in the wrong on the first occasion.

PALS was a far more productive approach than the complaints procedure, but I would recommend the Practice Manager above all other approaches :D

2 years is nothing :wink: I had gestational diabetes in 1997, but missed the appointment where I was going to get my diagnosis as I was in labour at the time, a month early :roll: 8 years later I get invited to my GPs diabetic monitoring clinic :shock: this was before even the insulin resistance was picked up! When I called the surgery to find out why I'd been invited to the clinic I finally got the gestational diabetes diagnosis :lol: :roll:
 
You can also request under the Computerised Information data act a copy of the medical records held on computer from your surgery... They do tend to charge for this, in most cases around £5-£10... This might shed a little light onto the matter...

Because you've got a little glitch, that you didn't return as requested by the doctor, this might be wise to start with getting a copy of your records to look at, then as spiral says contact the practice manager with any questions or concerns that you have regarding the information from your medical records, then taking it further through the steps as spiral suggests if you feel that your questions or concerns haven't been appropiately dealt with at this level, moving up-wards until you get resolvement..

To go in all gun blazing, and straight to the very top, may not be to your advantage, as there might be a understandable reason how this happened that once explained you can say, yes I do understand and fair enough...

As to time scales, well this has only just come to your knowledge, and one can't complain about something unless one actually knows something is wrong, so I would assume that time scale actually isn't the issue if you find that you do have to make a serious complaint about what has happened...
 
Going through the process of getting your medical records, on paper and computer, is very longwinded as it takes time to collate the information and get permission from any third parties. The £10 thingy is related to your rights under the Data Protection Act rather than providing you with information in a form you can use. There may also be additional charges for getting everything copied/printed.

It really is as simple as a phone call to the Practice Manager, especially if you know what information you want or have a specific query, which you do. In my experience, keeping it friendly and informal means you might well get information you wouldn't get if people are feeling defensive or pulling every last bit of info together. I have found Practice Managers often go through things with you on the phone - I did this recently to check the history of a problem I have because I needed some dates. Often, you might be offered the info you want - a print out of the test results - as a result.

Loads of people don't go back for results, especially men. What I think you are saying is you want to understand why the results appear to have been misinterpreted at the beginning and why it took so long to get your information on to the system and flag up the diabetes.
 
I Hate to sound like confucious but sometimes it's best to move on. Send the practice manager a letter of complaint by all means but now take control of your situation and the big 'D'. Get some testing gear from the docs or buy it you have to and read these forums, cos probably all you need to know will be here, although sometimes it's buried a bit deep ! Then take control, have patience and see what works for you. I hope that doesn't sound patronising but it all becomes a bit clearer with time.
 
First of all, I would like to thank everyone for their helpful replies. I think I will take Spiral’s advice and contact the Practice Manager. I’d just assumed the PCT would be my first port of call, but if the Practice Manager is the way to go then so be it. Would it be possible for me to make an appointment to see him/her personally rather than discuss my problem over the phone? If necessary I don’t mind paying £10 or whatever for a copy of my medical records as my problem is remembering dates, particularly exact dates of when I first went to the doctor to request blood tests to determine whether or not I had diabetes. I’m pretty sure my first visit was January 18th 2005 (the reason I remember this is because January 18th is my birthday).

Jopar, I’d just like to clarify something. I have absolutely no intention of going in all guns blazing. Apologies if my post gave this impression. I merely want to find out who was responsible for updating my medical records and whether it was due to someone’s incompetence. Just to clarify another point, this actually came to my knowledge two years ago and I’m worried they might wonder why I waited so long before following it up. In my defence I was coming to terms with the fact that a latest series of blood tests came back showing I had Type 2 Diabetes. Since then, I have been on Metformin 500mg twice a day.

Dingbat, I appreciate what you’re saying but I’m afraid in an instance such as this, I cannot move on. Especially if, like I said before, this is down to someone’s incompetence. That person, in my opinion, should definitely not be working in a medical capacity. Okay, I know to err is human, but I think this person should be answerable for their mistakes. I think it would be irresponsible on my part just to sweep this one under the carpet. Incidentally, this isn’t the first time mistakes have been made at my doctor’s surgery. There have been occasions when there have been mix ups with appointments I’ve made – i.e. where the receptionist has argued black was blue that I hadn’t made an appointment even though I have a text message from them confirming my appointment! Their argument is that it is the PCT that sends those text messages, not them. So this should give you some idea of what I have to contend with. I’m not in the habit of making complaints but I think in this instance I have very good cause.

Incidentally, I do have a Blood Glucose Monitoring Kit and test my blood sugar once a week (as directed by my Practice Nurse). For most part I’m able to keep my blood sugar below 7.1, however when I tested it this morning it was a staggering 16.6. To be fair, this test was done after breakfast whereas I normally test my blood sugar before having anything to eat (again this was recommended by the Practice Nurse). I do see the nurse regularly regarding my diabetes and would say it is pretty much under control.

Thanks again for all your replies. I appreciate you taking the time to reply. Yes, I have visited this site regularly for the past three or four months but only just got around to actually joining. I hope to contribute to the site in coming months (especially when I’ve got over this darned Urinary Tract Infection which is making my life a total misery at the moment).

Dave
 
Dave
just a little something I picked up from reading your last post
You test your blood glucose once a week as directed by your nurse and yet you managed to pick up a 16.? this is FAR too high. It's well into the danger zone. Even your usual 7.1 is on the cusp.
You need a week or so of INTENSIVE BG checking. to find out what's happening during the day. What was your last Hb A1c?
Tell your nurse about the 16 and request some more strips, explaining why you want them and then,for a week. Test on waking, 1 and 2 hours after breakfast, before lunch and again 1& 2 hours after and the same for dinner. If your Bg is spending more than half your time at above 7, which is likely, you could be on the road to complications.
All diabetics need to do this exercise to learn what foods push their bgs up unacceptably high.
Hana
 
Thanks hanadr,

I have an appointment to see my GP this evening so I shall mention it to him then. He'll probably refer me to the nurse. Admittedly, I haven't seen her for a couple of months as I've been quite poorly with a recurring Urinary Tract Infection. I'll let you know how things go.

Thanks again for your comments.

Dave
 
Dave
do you realise that UTIs are common in diabetes and one of the best ways to prevent recurrence is to have GOOD control?( bgs under 7)
Hana
 
Thanks Hana and Patti. I went to see my GP this evening and told him about my blood sugar being 16.6. He has increased my Metformin 500mg to three times a day, instead of twice a day. I am also on Ramipril 2.5mg for High Blood Pressure, which he has increased to 5mg a day. And as regards to my UTI and high temperature he has prescribed a 10-day course of Amoxicillin 250mg (one capsule to be taken three times a day). The doctor also wants me to come in and see the nurse every week for the next four weeks (or longer if necessary) so that she can monitor my progress.

I'd like to take this opportunity to thank all the helpful people on this forum. Your advice and support has helped reassure me.

Dave
 
Dave, what meter do you use? My Accu-chek Aviva came with free software from Roche to produce graphs and charts based on your readings.

And drink lots of water, keep flushing your bladder out. I have had occasional bouts of cystitis (before diabetes) and I know how incredibly painful it is.

I hope you are on the way to having your questions about what happened to your diagnosis.

When I was trying to get to grips with all this in Feb/March one of the most helpful things I found (before I found my way here :D ) was http://www.bloodsugar101.com What They Don't Tell You About Diabetes. It took away the blame (us T2s have a really bad press don't we :( ) and gave me some hope that I could avoid complications by managing my diet to keep tight control of my blood sugar. I found it well written and easy to understand - even tho it is American :wink:

However, you do need to bear in mind that the blood sugar numbers there are in American and require translation with a calculator :o Divide the American numbers by 1.12, then divide that number by 18, and that will give you a number that you would get on your UK machine. Simples :shock: :roll:
 
Hi Spiral,

The meter I use is a Prestige QX Smart System, which was given to me by the nurse when I was diagnosed with T2 two years ago. Unfortunately, my meter didn't come with any software, although it does have a serial cable port where presumably it can be hooked up to a computer, but no cable was supplied. Incidentally, I tested my blood sugar on waking up this morning and the reading was 5.3. I will test it again a couple of hours after breakfast.

Thanks Patti, my meter came supplied with a log book to record all my readings. I will however start keeping a food diary as from today.

Thanks again, I will keep you updated on my progress during the coming weeks.

Dave
 
Hi Dave,

I totally sympathise with you regarding your complaint. I too have been thinking of complaining and reading the responses you got I will go to the practice manager. I had blood taken in March of this year as I was very lethargic......I was told the results were fine.....so I though oh well must be an age thing and I will need to live with it. At the same time I was referred to a dermatologist for my psoriasis as it was getting bad. She susggested taking bloods and I todl her I had had them done recently, so could she not call my doctors surgery and get the results. This was in May......I then came in from work one day to a voicemail message from my doctor admitting they read the results wrong and that they had only noticed when the dermatologist called for the results. I have now been diagnosed as type 2 but they are letting me try and manage it with diet for the first few months and will re access. My main concern is that had the dermatologist not requested my blood results I would be none the wiser. At first I thought just let it go...but so many people are telling me to complain as this could happen to someone else who may not be as lucky as me and go undiagnosed until it is critical
Angela
 
Hi Angela,

Yes, I would definitely lodge a complaint if I were you. You are of the same mind as me when you say it could happen to someone else who may not be so lucky. Medical mistakes can and do cost lives and the people responsible need to be held accountable for their mistakes. To be honest, I haven’t proceeded with my complaint as yet, only because I’ve been feeling really poorly with a recurring Urinary Tract Infection and high temperature but as soon as I feel well enough I will be making an appointment to see the practice manager.

I’m glad to say I’m feeling a lot better and I attribute this to the advice given by the wonderful people on these forums. Two weeks ago I honestly felt and looked like I was at death’s door. Now I’m starting to feel like my old self. I now keep a food diary and check my blood sugar at least four times a day – which I’m happy to report seems to be under control with readings that average 5.4. Despite what my nurse said about only doing this once a week. I think maybe she’s just trying to save the NHS money by making the lancets and test strips last as long as possible!

I will of course keep everyone posted as regards to the progress of my complaint as and when the time comes.

Thanks again.

Dave
 
Cheers John. Apologies if I'm repeating myself here but when I went to see my GP on Tuesday he increased my Metformin dosage to 1 x 500mg three times a day (instead of twice a day). He also upped my Ramipril from 2.5mg to 5mg per day. And for my UTI and high temperature he prescribed a 10-day course of Amoxicillin 250mg to be taken three times a day. The Amoxicillin seem to be a lot more effective than the Trimethoprim 200mg he was prescribing before. I had a decent night's sleep last night and finally woke up without being soaked in cold sweat. I'm definitely on the road to recovery :D

Dave
 
desperate_dave said:
Cheers John. Apologies if I'm repeating myself here but when I went to see my GP on Tuesday he increased my Metformin dosage to 1 x 500mg three times a day (instead of twice a day). He also upped my Ramipril from 2.5mg to 5mg per day. And for my UTI and high temperature he prescribed a 10-day course of Amoxicillin 250mg to be taken three times a day. The Amoxicillin seem to be a lot more effective than the Trimethoprim 200mg he was prescribing before. I had a decent night's sleep last night and finally woke up without being soaked in cold sweat. I'm definitely on the road to recovery :D

Dave
Click to expand...
Now's the time to get things sorted - Dave! I'm on 2 X 500mg of metformin twice a day and understood that there was still a little bit of scope for tablets before I would need to go onto insulin injection. However, I'm glad I sorted my condition out before reaching that stage. The doctor has just reduced my Ramipril from 5mg to 2.5mg so I'm starting to go the other way.

Good to hear that you feel a lot better. I expect the UTI thing to sort itself out when you have better control of your blood glucose levels.

Stick at it!

John
 
Will do, John. I think this UTI thing has been something of a wake up call. I still need to go into hospital on the 28th of this month for a CT scan of my abdomen, and again on the 1st October to have a camera inserted into my bladder via my urethra. It doesn't sound like a very pleasant procedure but I've been assured I won't feel a thing. Needless to say, I'm bricking it at the minute and keeping my fingers crossed that they don't find anything "serious". I'm now pretty sure the root of my problem will stem back to poor control of my diabetes and I've finally realised that diabetes should NEVER be taken lightly.

Glad to hear the doctor has reduced your Ramipril to 2.5mg per day. It sounds like you well and truly have everything under control. Well done, John.

Dave
 
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