How were you told that you had diabetes?

There is a whole discussion in the medical world going on about the psychological management of diabetes.

However the thing that they seem to skirt around is how to tell someone that they are diabetic!

This is after all a chronic disease. It isn't like many other diseases that you can see or feel as in lumps/bumps etc.

It is mostly trivialised by the public and that's partly because they have no understanding of what diabetes is or the complications that can occur.

If you had cancer I'd hope the doctor (or more often a consultant) would call you in and tell you and break the news as gently as possible.

So why isn't this the case so often with diabetes??

So how were you told??

Nick

Having been backwards and forwards to my GP for ages with various symptoms, and no results, I went to a healthcare event held at work. I had various tests done, and was advised to get a quick appointment with my doctor. I took the sheet of results from the event at work and my doctor arranged more tests and finally agreed I am diabetic. I still wasn't properly told until I had a prescription and the pharmacist said as a diabetic you're entitlet to free prescriptions.

As for emtional support, I'd get more support from a hungry shark...

I was drinking a lot of water and then of to the toilet and my wife being a nurse told me to see my Doctor. Lo and behold he told me I was a Diabetic. I went on Diet, then tablets and then worked my way to Insulin and tablets. I check my blood 4 times a day and so my finger ends act like a watering can . I inject 4 times a day and still searching for new areas to inject Ah! well, such is life, it could be a lot worse.

I was diagnosed with high blood pressure - and then my doc said - have we checked you since your gestational diabetes for diabetes? I said no, so she did a blood test. Then another to check and I had already guessed. But the support hasn't been there at ALL.

My eyesight had deteriorated very badly so I went to the Optician at Vision Express. She was wonderful and advised me to go and see my GP straight away who then had me admitted to hospital with DKA.

Looking back, all of the other symptoms were there including weight loss, unquenchable thirst, tiredness and the need to wee every 5 minutes!!! However it took the optician to diagnose me as diabetic.

DKA? Sorry me stupid

Eerrrmmmm to be honest, they didn't really tell me. I had the usual, weight loss, plotting your day by toilet facilities, extreme tiredness, sweet breath, vomiting, thrush (which they later decided wasn't). Anyway I think they said to my mother "she has too much sugar in her blood, and she will die if we don't sort her out". I think I hid under the bed sheet and cried. later a doctor did say that I had to inject myself forever, stop eating sugar, and if I didn't I would die. I was given an orange and a syringe and told to practice - I stabbed it to death. A few days later I was discharged home, with my mum carrying all the gear in a large carrier bag. After that anything that went wrong turned out it was always my fault, I hadn't done something, I hadn't checked something, I hadn't etc. etc. I was barely 15 years old.

All the doctors need to do, is sit down and talk to you - ok so you may fall apart, but they could a least give you a tissue. Two friends of mine have recently been diagnosed with Type 2, that's it, you have Type 2 diabetes, we'll send you an appointment to see the diet people - one of my friends is still waiting for that appointment 8 months after seeing her doctor and being told the bad news. She was so scared that she stopped eating almost everything. It makes me so mad!

Hi Imogen

Your definitely not stupid - Diabetic ketoacidosis (DKA)

Its more common in Type 1's but it can kill you I had it because I was 3 months undiagnosed with Type 1.
Type 2's can get it though.

Thanks for the explanation Yep, I am still waiting to see the diet people though I have been to my retinopathy examination.

caroline wilson wrote:Having been backwards and forwards to my GP for ages with various symptoms, and no results, I went to a healthcare event held at work. I had various tests done, and was advised to get a quick appointment with my doctor. I took the sheet of results from the event at work and my doctor arranged more tests and finally agreed I am diabetic. I still wasn't properly told until I had a prescription and the pharmacist said as a diabetic you're entitlet to free prescriptions.

As for emotional support, I'd get more support from a hungry shark...

Hi Caroline,

Not a nice way to learn !

My GP phoned and said 'you're diabetic, no meds at the moment, just diet, see me sometime' or words to that effect!

I was in a state of shock..... I had previously had no symptoms other than tiredness and my father had recently died due to diabetic complications.

Back up or follow up education and care....nothing.

As this was nearly 7 years ago I would like to think that things have got better...it hasn't and I have patients who have been given the news in as blunt or even worse ways. I think Diabetes UK could do with putting some pressure on GP's to give some thought to how they might like to break news to patients.

Best wishes
Nick

Admin wrote:Thanks for the explanation Yep, I am still waiting to see the diet people though I have been to my retinopathy examination.

Hehehehe good luck on seeing a dietician Imogen. When I told the first one that I saw that I had lost 3 1/2 stone over 3 months by totally changing my diet ~ she looked at me and said ...'wow I wish I could' !!!

They are pretty rare beasties in the NHS so don't necessarily hold your breath waiting for one do keep reminding your GP and ask them to keep putting in requests.

Nick

PlymouthDave wrote:My eyesight had deteriorated very badly so I went to the Optician at Vision Express. She was wonderful and advised me to go and see my GP straight away who then had me admitted to hospital with DKA.

Looking back, all of the other symptoms were there including weight loss, unquenchable thirst, tiredness and the need to wee every 5 minutes!!! However it took the optician to diagnose me as diabetic.

Hey you're a lucky man Dave and well done to the Vision Express lady!!!

Nick

Hey jungle ~ that truly is a dreadful tale.......... trouble is why am I not surprised?

Perhaps we should gather together a collection of these stories/recollections and pass them to the GMC (General Medical Council)or BMA (British Medical association) for their comments??

Hopefully you can find some support on here that has been so badly lacking

Take care
Nick

To be honest Nick, no-one cares, having had this for a very long time, and having being caught up in the treatment of the same and its evolution, it seems to be all about money in the end. The NHS is under constraints and targets, I (don't know about anyone else) don't have a GP anymore, but a collective, so you never get to see the same one twice. So you end up repeating your problem, (thats if you can get an appointment at all) I don't know how many times, and of course everyone has different ideas and ways to treat you.
One consultant once told me, many many years ago, that the cure for diabetes would not be high of the scale of things to do, after all he said, how many people would lose their jobs, just think a cure and no-more medicine is required to keep you alive, no more blood checks, no more prescriptions given out - how many millions would that take out of the economy - of course being young I laughed, thought he was just being silly - now I wonder.
For me being diagnosed eventually made me into the very cynical, control freak that I am - I won't even go to a country where you need to have vaccinations to visit - and why is that you ask ......because I can't do the injection myself! (laughing)

Crap thoe my docotor is, it is only a small practice, so I manage to see the same doctor most of the time. Of the doctors and nirses (3 doctors and 3 nurses) there are as many different ideas on treatment, which can't be good.

I agree it is all about money and getting as much as possible for as little work as possible...

Junglegirl wrote:To be honest Nick, no-one cares, having had this for a very long time, and having being caught up in the treatment of the same and its evolution, it seems to be all about money in the end. The NHS is under constraints and targets, I (don't know about anyone else) don't have a GP anymore, but a collective, so you never get to see the same one twice. So you end up repeating your problem, (thats if you can get an appointment at all) I don't know how many times, and of course everyone has different ideas and ways to treat you.
One consultant once told me, many many years ago, that the cure for diabetes would not be high of the scale of things to do, after all he said, how many people would lose their jobs, just think a cure and no-more medicine is required to keep you alive, no more blood checks, no more prescriptions given out - how many millions would that take out of the economy - of course being young I laughed, thought he was just being silly - now I wonder.
For me being diagnosed eventually made me into the very cynical, control freak that I am - I won't even go to a country where you need to have vaccinations to visit - and why is that you ask ......because I can't do the injection myself! (laughing)

I think his philosophy re a cure not being high on the list could not eb further from the truth. Just like a 'wonder' drug for cancer or HIV, there is so much research being done for cures or long acting medicines nowadays. Just think of stem cell research for Type 1 for instance.

I can understand how you feel and it must wear you down seeing different quack after different quack and having to tell your story all over again. I feel for you.

Best wishes

Nick

caroline wilson wrote:Crap thoe my docotor is, it is only a small practice, so I manage to see the same doctor most of the time. Of the doctors and nirses (3 doctors and 3 nurses) there are as many different ideas on treatment, which can't be good.

I agree it is all about money and getting as much as possible for as little work as possible...

Mmm not sure that I totally agree re so many different types of treatment. There are guidelines for the treatment of diabetes and associated diabetic problems. There are a number of different drugs before you even start thinking about insulin. There are numerous heart and blood pressure tablets not to mention diuretics....and of course everyone is differenta nd has different reactions. However a lot of treatments seem to follow a similar course and it is up to the dr to monitor how patients get on with the medications. BUT no matter how much of a nanny state we live in I am sure that most GP's don't do repeat tests say for liver function unless they are part of other tests like Hba1C. It's down to us to say if we have strange reactions....to keep saying it and ask for change if required. Keep asking for tests if you need them etc etc etc.

Nick

Nick for you and I those words optimist and pessimist seem to fit. I have to disagree with you, yes there is more research, I agree on that, but there are no "cures" on the horizon, just like other long term illnesses, they are money makers for lots of people, drugs can keep us alive and new enhanced drugs, can keep us alive, cure us and there is no need for drugs! Simple maths. Yep there are guidelines - great - guidelines are just that and we don't all fit into them. I did have a strange reaction to human insulin, for 20 years I said I had a problem, I was stamped upon, made to feel like a lunatic, and generally shut up. My GP at the time couldn't get any consultant to agree that human insulin was the cause of my problems and most doctors were under the mistaken illusion that animal insulin had been discontinued - thank goodness for the national media, who started to highlight other cases, where people had died on human insulin, and also to the IDDT who helped me so much in the end.
I mean for instance do you eat genetically modified food - you see its a personal choice, you can decide if you put it in your mouth or not, the human insulin I was on, was genetically modified - I never had the choice as to whether I wanted to take it or not I was made too. So you can tell your doctor all you want that you have problems, they don't necessarily have the "clout" to do anything about it ...... Take statins for instance - I now you just love those! (hee hee)

That particular consultant said those words to me about 25 years ago - I am not cured yet! Hmmmmmmmmm I wonder why. It would probably be a safe bet to say I don't think there will be a cure in my lifetime!

My practice has 10 doctors working mainly part time hours, several nurses, several nurse practitioners and numerous other things like dental, chiropody, etc etc all mixed in. To get an appointment you have to ring on the day - of course it depends what day you need a doctor as to which doctor is working. For instance I went last Thursday to see a Doc, who does know me, for some blood tests, he's not back now until next Thursday for a half a day - which happens to be his afternoon session - I work afternoons, so it will be the Thursday after that when he does a morning session that I can see him. (if I can get an appointment) Or I could see someone else and go through it all again ........ so you kind of loose faith and don't bother.

Hell's teeth!! What a hell situation re your GP's etc. I just hate how they get paid soooo much and are hardly ever there and still reckon that they should have almost consultant status!

I can understand how you feel when you explain it like that. I seethe at how patients are treated by the NHS and get so angry at the lack of respect that some like you get. They don't care and that is what is so unforgivable.

I will try my best to make so much of what I am hearing on here at or within the Patient advocate system. I truly don't think that so many in areas of research or 'power' within the diabetes world have any clue of some of the things that are going on.

I can be a hell of a Jack Russell when it comes to asking questions and trying to change/educate away from the status quo.

Take care
Nick

Hi

The doctors come and go at our surgery. I saw a nice doctor and as I kept getting a fungal infection he suggested a blood test for diabetes. I suspected I had this because of other symptoms but when the receptionist rang me on the mobile phone and said I should see the doctor and we made the appointment for the following day I was shocked. When I saw the doctor (a different doctor) she said she would make an appointment for me to see the practice nurse. She said the blood test showed the Hbac1 to be 16 % but that didn't mean anything to me as I didn't know what was normal. I was given some leaflets and then had to wait a couple of weeks to see the nurse. She weighed me (I had lost a lot of weight in a short time and was not over-weight at dx), took down some details and said she would make an appointment for me to see the dietician and a podiarist. For the practice nurse it is just a formality to do this and that. There is no bedside manner. I saw a different doctor about my rising bp and he gave me another tablet to take (up to 3 now) and asked what tablets I was taking for my diabetes. The nurse suggested I try diet first and he said that was no good I should take tablets. Eighteen months later the nurse realized I was taking tablets, and seemed annoyed. I don't know if she was annoyed she didn't know or that annoyed that I was on tablets. The doctor had told me to get a meter to check bg levels and last June the nurse told me I didn't need one as I was only on Metformin. I saw the dietician, who was a nice lady and I could actually talk to her but she not informative about diabetes, and said it was OK to have orange juice with my cereal for breakfast. I later found out orange juice is only when you are too low. A year ago I had my first screening for retinopathy and was told that was the last time they were doing it and now the hospitals would be doing it instead (and I had the impression that he was pleased about that as he was a very busy person) but the nurse and the doctor didn't know about that and recommended local opticians. I went to an optician this year and she said she had to charge me £17. I thought it best to have it done and paid her the money. She photographed my eyes but didn't put drops in them. However, I had a letter to go to my local community hospital where I did have drops put in my eyes and photographed. This didn't cost anything and I was very pleased, as the young nurses there were very pleasant and professional as well. They explained that the photographs (which I could see) looked fine but they would enlarge the photographs to 4x larger which would show background damage, if there was any, and they would send the results to me and my doctor. The nurse will be checking my feet now, and not the podiarist. I will only see the podiarist if there are problems. She is very brusque. The other nurses at the surgery are cheery and nice but the diabetes nurse is very matter of fact. I have just come to the opinion that diabetes is something to get on with the best you can certainly haven't had the emotional support that is recommended in the NICE report. The best place for support is on these boards.