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Misdiagnosis Can I claim against my GP ?

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Eliminator

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Hi All,
I have been on this site before in this user name and another one.

The thing is I was told in May 2008 that I had diabetes and due to my age it would be type 2, so 3 months of diet control then 13 months of every tablet under the sun, and all along I kept asking for a test to see if I was type 1 (as my 13yr old son was diagnosed type1 5 days after I was diagnosed)and was always told "no" there is no such test.
For months I saw my nurse at the local surgery and she was very very poor at her job and people skills. I even saw my doctor a couple of times and he just said see the nurse, I asked to be transtered to another nurse and was told she was the only one that deals with diabetes in our surgery.

A few weeks ago, I went to see the docs as I started loseing feeling in my right leg and pins and needles in my fingers and toes. I got to see a locum and "demanded" he refer me to the hospital, as my care for the last 14 months had been ****. He did me a referal letter to hospital and I went to see a proffessor. I aksed was there a test to see if I was type 1, he said yes but it was expensive, but he did the blood tests anyway. I also told him I wanted to go on insulin as 12 tabs per day still had no affect even after 14 months.

My results came back today and the hospital have confirmed I am type 1 and should have been on insulin for the last 15 months now.

So would I have a claim against my local GP for misdiagnosis and incorrect treatment for my condition ?
 
Hi Eliminator
Sounds like you have been treated pretty badly by your GP surgery to put it mildly, and you should certainly consider making a complaint. You have been misdiagnosed and the reasons for why and how that happened need investigating. However beware that your GP surgery may use it as an excuse to take you off their patient list. Don't let that deter you, you'll probably looking for a new GP anyway. Ring your local PCT and explain the situation, they can advise you on how to proceed.
As a Type-1 of 20 years, my worst nightmare has always been 'budget focussed' GP surgeries looking after the care of diabetic patients. When I was pregnant with my 1st child my GP asked me if I checked my own blood glucose at home, while being aware that I'd been Type-1 for 3 years! He had a sign outside his surgery giving times of his Diabetic Clinic :evil: I've met some GPs,(apart from that one!) who clearly don't even know the difference between type-1 and type-2,so how they can diagnose is a mystery to me.
I've seen Diabetes care and general advice from professionals take a downward turn since I was diagnosed in '89, and unless people complain and make noise when situations like yours occur, nothing will change.
You've obviously been through a very stressful time, especially having your son diagnosed recently too. I made a complaint to my local hospital regarding my Diabetes Consultant only a few weeks ago, I feel better for it, and I can completely understand how angry you are feeling.
I hope you don't suffer any repercussions from your late diagnosis, and that you and your son get better care from your GP surgery.
Jus :)
 
http://www.pals.nhs.uk/

There might be something useful on this site.

The key to making a successful complaint is to be seen to be being reasonable yourself.

There will be a designated person, usually the practice manager, who you make your complaint to in the first instance, if you feel you can't discuss it with your GP.

There are further steps you can take, and you should be told about these by the practice manager.

Might be worth talking to someone from PALS before taking things very far.

Good luck
 
It's very difficult to get past the barriers with complaints. A GP once nearly klled my husband by Giving him IV glucose, when he was already in DKA. It meant 8 days in ICU for husband followed by weeks in hospital. I tried, but was blocked at every turn. Now we have PALS, it might work. Can you prove you asked to be tested for T1?
 
I cannot prove that I asked for the test as I did not record the conversations. I also do not want anything from it for myself.

The point I want to make them pay for is...

They would not pay for me to have a test for type 1 as it is expensive (apparently) but after many visits and concerns that none of the medication they gave me was doing anything at all, I should have been tested at the point at least.

I was also not given keytone test strips and every time I said my bloods were still very high, I was told "well it's your own fault, as it's your illness and you have poor controll"

I want them to be fined or something to a higher cost of the test, so that in future they might test someone else and that person not have to have bloods in the 20+ for over 15months without insulin as I have.

I will contact PALS and see what they say.

thanks
 
PALS will guide you. However, I have little hope that this sort of thing won't keep happening.
At the moment, diagnosis of T1 or T2 is so often by assumption.
If you read this forum carefully, you'll see it's not a rare event.
What may happen is that all diabetics will be put straight on to insulin. I suspect that is what happens to youngsters, some of whom may well be T2s.
 
Not be too contentious, or to diminish your stress but if you managed for 15 months with no insulin then I sincerely doubt you had T1.My understanding is that is pretty **** quick in terms of making itself 'known'. Im not sure re the science but maybe you have T1.5 (LADA - Latent Autoimmune Disease in Adults) though I can assume from your comments on your bad GP that you never got strips to test etc, and couldnt see what was happening in that 15 months.

Your GP made an assumption on age, just as mines made an assumption on mine (33 at dx) and didnt even think I had diabetes as there was no way Id be T2 and she thought I was too old for T1 (Scary, I know). 6 hours later I was in hospital with a bg of 27 , +++ketones and start of DKA

I would complain about a number of things
-lack of strips to monitor (even in the first instance, it would have told you Met wasnt working)
-attitude of staff in the GP, continual diversion to the Nurse, who I can GUARANTEE you will be a nurse with knowledge (cough) of diabetes and not a DIABETES NURSE SPECIALIST
-fact that you now have neuropathic problems as a result of being ignored
-fact that you werent listened to generally and were not a partner in your own care

Have a look at the National Framework for Diabetes on the NHS website - get yourself some jargon for your legitimate complaint. The fact is your GP doesnt know enough about diabetes, but the sadder fact is he didnt try to learn.
 
Thanks Lilibet,

I had test strips that I bought myself from asda, which I used for the first few weeks then I told my doc I wanted them on prescription, and I got them. I did not get keytone test strips, but my son had some and I used his and had Between +1 +2.
The nurse is a nurse who knows about diabetes yes (not a diabetes nurse specialist) She is also the surgery cardiac nurse (so I hope I don't need that) or I might get blamed for having the wrong colour blood, she would prob say I should have green blood or something for all she knows.

My son and I have been very lucky, I diagnosed him by accident and I think he had a BM of 38 or something (15 months ago now, can't remember) And my avarage is high teens to mid 20's. but I did cut out all the no no foods and I only tested before meals.

My son has had 3+++ a few times and neither of use have ever felt sick with it, the worst has been going the loo a lot in the night, and a few bad mood swings.

My problem now is, I dont eat of a morning, so don't need the first novorapid of the day, neither does my son. we both take levamere of an evening.

But I do eat of a night around 10pm, I want to start carb counting (like my son does) and treat with novorapid at each meal, but my hospital nurse specalist has said not too just yet, as she does not want me to take insulin before bed. I have also asked can I stop the metformin as it does nothing for me. She is going to ask the proffesor about that.

I have been a bit stresses this week and have pigged out quite a bit on chocolate and cake almost every day, yet I have had a BM of 5.9 yesterday. I was well chuffed, it is my lowest ever recording. I am still reaching 22 at peak times though.

But I have to wait for the nurse, to tell me when I can start adjusting my own insulin.

At the moment I am supposed to take

5 units of novorapid with brekfast (but I don't as I don't have breckfast)
9 units with midday meal
7 units with evening meal
18 units levamere with the last injection.
 
Hi Eliminator
Pretty scary stuff about your boy there!

Good news re your bg today and glad to see you on a decent insulin regime. Shame your nurse is a **** useless. Im not on basal bolus insulin yet but its design is for dose ADJUSTMENT so this fixed dose **** drives me mad. Have a look at DSOLVE site which has a bit on Carb Counting, or also BDEC site which has its own version too. If you dont fee confident to titrate your own insulin then it might give you a step for a hint.

I think the problem with taking Novorapid at night (as I see it) is that it has a half life of 4 hours (ie it lasts 4 hours). Usually peaks within 30 minutes but if you are taking 18 u Levemir and then Novorapid at 10pm I would be concerned about Hypos overnight, though this might not be a problem for you. I hope you get seen soon by a DECENT health professional because swinging from the 5's to 22 must make you feel awful. If my bg hits double figures (and sometimes it does for no reason!) I could lie down in the street and go to sleep.

Withouth specifics its hard to tell whats going on for you (apart from **** healthcare) but something worth noting is that many people on Levemir split their dose and find it helps counteract high bg. You might find that its your Novorapid thats tackling all your bg problems and masking this fact.

Tis complicated ****** diabetes :D You need to be a NASA scientist to work it out at times
Unfortunately for you dont even seem to have a health care team with basic knowledge, so read away and then put that bloody GP and Nurse's gas at a peep!
 
I have to say I don't think it is as simple as only type one and type two. They are finding a whole load of single gene diabetes that don't fit into either category. If your son also has similar kind of diabetes to you this is very likely as there is a 50% chance each child of someone with it will get it (it's luck of the draw whether they get the single gene that is responsible from the mother or the father).

I am somewhere inbetween type one and type two but I don't fit any of the recognised MODYs (was genetically tested recently). Also I am on both metformin and insulin, a rare combination, but it works for me. I have been told I must have an as get undiagnosed genetic form, as my mother and brother also have it. Apparantly they are discovering new genetic types all the time. Think about it, if 100 years ago you would die if you got diabetes before you got to childbearing age but now you don't, this means the potential for genetic strains to flourish has increased immensely.

Agree that if you had true T1 you would have been very very ill before twenty months was up, so you may want to consider that you are, like me, neither. They do genetic testing at Exeter, if you get referred to a consultant (and you should) then perhaps ask if they can do this for you and your son.

Pls feel free to pm me for more info
 
I think that you'd find it difficult to sustain any claim, though on the face of it your treatment has not been good.

LADA is officially categorised as type 1. but can be a much more gradual development than classic type 1. so it is not true to say that you couldn't have gone without insulin for that length of time.

It probably accounts for 10% of people initially diagnosed as type 2 ( I'm sure many are never rediagnosed and are shocked that whatever they do with diet and oral medications they relatively quickly end up on insulin.)

The normal diagnostic criteria are:
1) adult age at onset of diabetes;
(2) the presence of circulating islet autoantibodies, (normally anti GAD yet apparently some classic type 1s don't have antibodies , so though a strong indicatopr ir may not be definitive)
(3) insulin independence at diagnosis, this is what distinguishes LADA from classic type 1 diabetes

Not normally diagnostic in the first place (unless you put off going to the doctors like I did) but people with LADA are normally relatively insulin sensitive.

Any diagnosis is down to clinical judgement ,if you are diagnosed early on it may be very difficult distinguish it from type 2 and initially the treatment may not be different (though whats best is debated.
http://www.cochrane.org/reviews/en/ab006165.html
There is at present quite a lot of research going on and some discussion as to how it should be classified in the future (ie as Type 1 or 1.5 or something else ) and this is reflected in this wikipedia article.
http://en.wikipedia.org/wiki/Latent_autoimmune_diabetes

having said all that Anticarb suggested MODY which is certainly worth researching as it is a strongly genetic form of diabetes (the Exeter site is the best place for info on that)
http://projects.exeter.ac.uk/diabetesgenes/mody/
 
Well, I had four years being wrongly labelled Type 2 and I am now classed as Type 1. I was put on insulin after the first year but only after my inistence that I be referred to a specialist and only then was I given a GAD test, which came back positive. Although I'm told I have LADA, my specialist insists it is Type 1, as he doesn't recognise Type 1.5. All my paperwork has me down as Type 1 now.
 
incidentally they're not sure I have MODY either. MODYs are typically not insulin resistant therefore not responsive to metformin, whereas I and the rest of my family are. They have admitted they have drawn a blank and cannot diagnose me.

The point I was trying to make though, is that since diabetes treatment has enabled people of childbearing age to live, I think genetic (monogenic) types of this illness have flourished, creating a whole subset of diabetes types that they are only just beginning to identify. I just thought it interesting that the OP and his son both have it, strongly suggesting his may be of the monogenic type.
 
My son had the test sent to Exeter 15 months ago when he was diagnosed, he was on insulin from day one anyway and even with bloods in the mid and high 30's and keytones he had no side affects what so ever.

I was diagnosed purely by accident, I was doing some heavy work in the garden and my wife brought me out a pint of orange cordial and I downed it in one (it was also a very hot day), then I asked for another. to me this seemed a normal thing to do when working hard on a hot day. but my wife works in a hospital and said people who drink that much and are still thirsty have diabetes and told me to do a water sample, to keep her happy I did. That is how I got diagnosed, I was shocked.

From then until a few weeks ago, I have never had any side affects other that going to the loo of a night.

There has never been a case of diabetes in my family EVER, I was the first diagnosed at age 37.

The other thing that now affects me is that I was a HGV driver and I was told that I had to tell DVLA in Swansea, so I wrote them a letter informing them I had diabetes and that I was starting insulin, this was about 6 weeks ago now, and I said if they needed to send me a new licence or anything to get in touch with me, I havent heard a thing from them. So I still have my licence with HGV on it.
I also told my car insurance KWIK FIT and they didn't charge me any extra (which was a supprise).

I have tried all sorts of experiments over the past 15 months to try and see if I was type1, and my results were always not what I expected. things like...

If my son drank a bottle of lucazade or ate say a family size dairy milk ( for example only ), his bloods would go right into the 30's.
If I did the same my bloods would stay in mid teens to low 20's, so I assumed I was still produceing insulin of my own (this was 15 months ago, before I started on any tabs) so I thought then I was prob type 2 as the GP said. But when 2000mg metformin, 120mg gliklazide, omeprozole, liptor and some other bloody one I forgot what is was called, all had no affect on my bloods other than gave me wind, I thought for what these tabs should do to me isnt happening, So the metformin is the "key" that helps the cells absorb and the gliclizide to give the pancreas a kick up the backside to produce more insulin. Well I suspected that I might not be type 2 after all.

But what puzzles me now is, now I have been on insulin for about a month. I go to bed and only sometimes go the loo in the night, most nights I don't so something must be working with the insulin, and I have had my lowest ever BM of 5.9 while on insulin. But if I wake up in the morning having gone to bed with a BM of say 17, When I wake up it's dropped to say 13.3, But I don't eat breckfast or anything and do a BM 4 hours later just before lunch and it will have increased to 14.8

Why the hell does it go up when I havent eaten anything ?
 
Anti carb
The point I was trying to make though, is that since diabetes treatment has enabled people of childbearing age to live, I think genetic (monogenic) types of this illness have flourished, creating a whole subset of diabetes types that they are only just beginning to identify. I just thought it interesting that the OP and his son both have it, strongly suggesting his may be of the monogenic type.
Click to expand...
I think this is a good point, it does of course also apply to LADA. My first grandchild arrived at about the same time as my first symptoms. I knew of no other person with diabetes in my family, yet a year after I was diagnosed a cousin was diagnosed and almost immediately went onto insulin. (hes in South Africa and I don't know what sort of tests have been done as I've never met him)


Eliminator,
presumably at the moment they are helping you to sort out your insulin doses, I hope that you are not now going to bed with a BG level in the 17s.
The reason that your levels go up without breakfast is that your body senses the need for some more energy after its overnight fast and if you don't supply it in the form of food it releases some from the liver. (In some people it releases too much and levels can go up very high) 1.5mmol is quite a small rise.
Hopefully with a lower fasting level you would remain within target figures. Personally, I find if I eat breakfast (with the approriate insulin) my level at lunchtime will be lower.
 
Anti carb
The point I was trying to make though, is that since diabetes treatment has enabled people of childbearing age to live, I think genetic (monogenic) types of this illness have flourished, creating a whole subset of diabetes types that they are only just beginning to identify. I just thought it interesting that the OP and his son both have it, strongly suggesting his may be of the monogenic type.
Click to expand...
I think this is a good point, it does of course also apply to LADA. My first grandchild arrived at about the same time as my first symptoms. I knew of no other person with diabetes in my family, yet a year after I was diagnosed a cousin was diagnosed and almost immediately went onto insulin. He's in South Africa and I don't know what sort of tests have been done as I've never met him.
I read also that there is a huge rise in type 1b (idiopathic,) in other words we don't know what it is and what caused it but as it's ketosis prone and not insulin resistant it's a form of type 1. I've actually been called both 1b and LADA at different times by consultant.


Eliminator,
presumably at the moment they are helping you to sort out your insulin doses, I hope that you are not now going to bed with a BG level in the 17s.
The reason that your levels go up without breakfast is that your body senses the need for some more energy after its overnight fast and if you don't supply it in the form of food it releases some from the liver. (In some people it releases too much and levels can go up very high) 1.5mmol is quite a small rise.
Hopefully with a lower fasting level you would remain within target figures. Personally, I find if I eat breakfast (with the approriate insulin) my level at lunchtime will be lower
 
Hi Phoenix,

Yes I am going to bed with 17 to 20's, but I am just waiting for a message back from the diabetes nurse specialist to say if I can start taking an evening dose if I have an extra meal, or to start doing correction doses to correct high blood counts.

I did ask last week and my wife works on the next department, so she has taken my blood diary in today for her to look at. She said last week that we are adjusting slowly to get the correct basline insulin of levamere, then we can work on the novorapid and get things down to a normal level. As if we go too high to start I would have a "low".

The strange thing is, the odd time I get BM of 10 or less, I feel realy weird, and then have a lack of energy and go a tiny bit wobbely or dizzy kind of feeling, I assume this is coz I am used to such a high BM count and my body has to get use to the lowering for me to be "Normal" lol.
 
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