How well was diabetes explained to you?

[Barb]

My OH is currently involved in a project relating to how medical information is communicated to patients. He was wondering if he could pick your brains for any good or bad experiences you have had in this area.

In particular, can you offer any examples from personal experience where:

1. a doctor has explained things to you about diabetes in an unsatisfactory way, perhaps not really seeing things from the patient?s point of view

2. you have struggled to understand written information about diabetes or its treatment, possibly in a leaflet or on the internet

Any suggestions on how written or spoken medical communications could be improved would also be of interest.

Thanks in advance.

 

[Northerner]

Hi Barb, I'm pleased to say I can't help you much! Since I was diagnosed the information I have been provided with has been excellent. I've had a few consultants who haven't been interested at annual reviews, probably because my results have always been very good, which is annoying when you wait that long to see them. My GP is excellent. I think that the main problem I have had is with consultants, both at diabetes clinic and the eye hospital, where English has not been their first language. I've found that they tend to mumble, so it's not always easy to grasp what they are telling you, plus I've also found (a generalisation, I know) that they do not react to statements and questions in the way you would expect, and I think this is probably due to different cultural cues. As a result, they often appear disinterested or humourless. Maybe it's just the individuals I've encountered. My current consultant is English and I find him very easy to talk to. Don't get me wrong, I've nothing against foreign doctors, but communication is often the key skill required when dealing with something as complex and long-term as diabetes.

 

[Newtothis]

My diagnosis was given to me by my GP giving me a print out of information from Patient UK on type 2 diabetes....that was it.....she didn't even say you've got type 2 diabetes...

I was then sent away and told me arrange a blood test and appointment with the DN....had to wait 4 weeks.

Whole appointment lasted no more than 5 mins....

My first appointment with the DN scared the life out of me to the point where I am considering changing surgeries....even my 1st flu jab was met with scare tactics......

Only real support I have had is from those on this site....

 

[Andy HB]

I was diagnosed at St Mary's Hospital in London.

They were excellent and I had access to a DSN immediately who gave me a bg monitor with strips and showed me how to use it and clear guidelines on when to use it too. I was given plenty of really helpful leaflets and not given any 'odd' advice (such as the seemingly standard "eat plenty of starchy carbs" nonsense!).

She also told me about the Diabetes X-Pert course and I was able to attend it within just one month (she was one of the people running it too).

That gave me all the information I needed to get control pretty quickly.

My GP is OK, but isn't really involved with my diabetes because everything is running pretty smoothly at the moment.

Andy 🙂

 

[trophywench]

Not a doctor, but I have on several occasions almost come to blows with our surgery nurse over a load of boloney she was trying to spin me.

It's lack of training though, nothing else. She's an expert on diabetes cos she has done a whole afternoon course and has a certificate ....... 😡

I agree with Northie - I've had the same at our hospital which unfortunately - in these instances - is a teaching hospital so you get all sorts of nationalities and some of em will always be easier to understand than others.

The main problem I've had over the years though is nobody explaining how it's all moved on, so my knowledge has been sadly well past its sell-by date and all HCP's have assumed I already know it ..... amazing how well the jigsaw fits together once you have all the pieces.

But no idea how you would cure that !

Finally I am in a 'group' where we were actually talking about this very recently with some medical researchers at a University. The question was how to present 'risk'. eg Do you say Low Risk, or say a Risk of 1 in 10, or say a 10% Risk? And the answer is all three, so everybody can understand. Plus you need to illustrate that so do you use a Line Graph, a Bar graph or a Pie chart? Or a box with 99 smiley faces and 1 grumpy face? Or a box with 99 grey stick men and one red one? Or vice versa?

Every leaflet would be War & Peace and you'll never please all the people all the time .......

 

[Robster65]

I agree with trophywench about the lack of any real 'follow on' information.

I've moved house several times over the years so have struggled with continuity at times. If I was lacking in something I've had to go and ask and some have explained things to me whilst others have just assumed I knew it all and left me to carry on as I was.

The specialist clinics with consultants and permanent DSNs have all been very good and proactive, trying to 'sell' new ideas to me. The GP practices have generally been entrenched in old ideas.

As far as understanding literature goes, I was very uninterested for most of the years, preferring to coast along with what I knew. so didn't really seek out new info and ignored most of what was offered.

Nowadays there's so much info about, much of it conflicting, it's hard to know where to start. We're lucky being on the forum since there's always someone who can explain it in layman's terms but for newbies it must seem like information overload.

The main thing would be for GPs to be given standardised info packs to hand out to patients, new and old, and to be offered training so they're not stuck in the stone age.
And as TW says, it can be presented in a simplistic way, with more detail offered maybe in a second booklet that can be sent for or on a website.

Rob

 

[caffeine_demon]

I think my only real complaint about the information I was given, was the insistance that you "don't need a meter" - Everyone will have different tolerances, and it is the only way to find out what you can and can't eat.

 

[Northerner]

One thing I should mention is the Diabetes UK guide to Type 1 for beginners, which was given to me just before I left hospital. I found that it covered most areas I needed to be aware of in just the right amount of detail to get me started. Being a bit of a bookworm I have since read extensively and also did an OU course in Diabetes Care which helped me see things from another perspective. The best literature I have found is (of course!) Type 1 Diabetes in Children, Adolescents and Young Adults by Ragnar Hanas - an excellent example of how to cover all the complexities without blinding you with science. My only criticism of that book would be that it shouldn't emphasise the young person/childhood aspect so much, since it is relevant to all people with Type 1.

I have thought for some time that all Type 1s should be given a copy of Ragnar's book at diagnosis, and all Type 2s should be given a copy of Gretchen Becker's book. If this was done then at least people wouldn't be left feeling so confused and overwhelmed by the time they get home! 🙂

 

[FM001]

Mainly good experiences throughout my time. I was admitted into hospital to get my blood glucose down and spent a week there coming to terms with urine testing and injecting using glass syringes, they wouldn't let me go home until I was confident enough to control my diabetes.

At the time I was bombarded with leaflets and information but admit to never read a book on diabetes in my life, much of what I know is self-taught by personal experience and reading others experiences on this here forum, the only exception being the dafne course I completed in 2007.

Communications never been a problem and have a good diabetes team behind me all the way.

 

[trophywench]

hee hee Northie, not to suggest I've been diabetic and a member of DUK (or the BDA LOL) for a long long time or anything - but I got an unsolicited copy of that through the post 'quite a while ago' and was asked to comment on it - the content, layout, whatever.

At the time although I tried my very very hardest I could pick no particular flies with it, save for a couple of typos and I thought the pumping section was sort of in the wrong place. Yes you do need to know about it as a Type 1 but just wondered about where it was in the booklet. Can't recall what the exact issue was now; but the info in it was OK, ISTR .....

 

[Jennywren]

It was a long time ago in 1980 , when i was diagnosed and i was 10 , i remember sitting with my mum and dad in a doctors office and the doctor being very blunt and going all what could happen if we didnt look after my diabetes (complications ) I was 10 for gods sake and that mean old doctor put the fear of god in me !

 

[Pumper_Sue]

I was only 4 1/2 so my Mum told me my injections were magic medicine 🙂
Even though tjis was almost 47 years ago, I was lucky as Mum was a nurse.
The basic advice regarding carb moderation is the same now as it was then.

Mum once told me a Dr had said I would die young due to my diabetes, her reply to him was my daughter will out live you mark my words. 🙂

 

[Copepod]

When diagnosed at age 30 in 1996, I had stopped working as a nurse a few years back and had moved into marine biology, but the health professionals expected me to know about things that had moved on eg I didn't know about basal bolus regime, just about bimodal, so didn't protest when I was put on bimodal insulin, although from my comments about what was important in my like - outdoor activites, active work etc, it should have been obvious it wasn't suitable. The breakthrough came after I went on holiday in Belgium with an Australian student midwife friend. She must have spoken to her mum, a pharmacist in Tasmania, because soon after, her mum sent me an article about basal bolus insulin regime, so I asked the clinic staff, who were happy for me to change over. Then I moved away to do a MSc, and kept away from hospital clinics, having lost trust in diabetes professionals.

If I'd been diagnosed more recently, I'd have been on the internet and found out much earlier.

 

[Hazel]

Well........... as a T2 (tablet) 12+years ago - no not really

2 years ago when I moved to insulin, a brilliant DSN (sadly moved on) explained everything brilliantly.

My only gripe, and I make no apology for this. as T2 we are not eligible to attend DAFNE training - so, I am self taught. Which took me a while, only recently discovered bread just is not for me

 

[Caroline]

My OH is currently involved in a project relating to how medical information is communicated to patients. He was wondering if he could pick your brains for any good or bad experiences you have had in this area.

In particular, can you offer any examples from personal experience where:

1. a doctor has explained things to you about diabetes in an unsatisfactory way, perhaps not really seeing things from the patient?s point of view

2. you have struggled to understand written information about diabetes or its treatment, possibly in a leaflet or on the internet

Any suggestions on how written or spoken medical communications could be improved would also be of interest.

Thanks in advance.

My doctor is an idiot so he told me you don't eat anything with sugar in it and gave me a whole list of egatives.

I use this forum which has beena huge help and apart from a one day thing when I was fist diagnosed, I was told I was not eleigibe for any courses because I am too self sufficient.

As far as I am concrened a lot of improvements could be made in my GPs care, he is far more interested in his paper work, and I would like more access to professional/medical support. I gte loads of support and advice from here, but sometimes we need to see doctors and nurses too.

 

[heasandford]

I was 48 when I was diagnosed 11 years ago, luckily assigned to great consultant and wonderful DSN (when they finally decided on insulin) - first thing she said to me was: let's do the injection first, you won't hear anything I say until you stop worrying about this!

Although I think it was a bad time to be diagnosed, as basal/bolus wasn't suggested at all. I joined Diabetes UK and decided I should ask about it. While I feel they have been very supportive, I have not always asked the right questions and therefore not given the right answers, only the minimum. No one ever suggested how to reduce my HbA1c even though it was always upper 7s/8

Recently my PCT removed my access to any specialist diabetes clinicians, and I had to get very upset with my GP (awful) and his DSN, who may be OK, but at least she eventually admitted to not understanding all the results I showed her. Coming on here has altered my approach and I am now with a new specialist team

 

[Catwoman76]

I wasn't told a great deal in 1989, I wasn't even in my home town when I was diagnosed, but in a hospital in the north east and very scared and frightened, not knowing what to do and what was happening. The hospital gave me injections, I was then told I had to do it myself, injected in my leg and some blood dripped down my leg. I wouldn't say I felt informed or guided by anyone, and when I eventually went back to my sister's( I was advised not to travel back home straight away) when I went out and about, exercise , I felt very perculiar, which was my 1st hypo!!!!! we went off to my sisters doctor who told me I needed to reduce insulin by 2 units. So, I am glad for these forums and a lot more information and technology nowadays, thank goodness🙂 Sheena

 

[Barb]

Big thank you

Great response - my OH sends thanks to everyone for their comments and helpful book references.

My current consultants, GP and DSNs all do a good job but when I originally saw a GP, many years ago - with all the classic symptoms of Type 1 diabetes - he failed to diagnose me and I ended up in a hyperglycaemic coma.

Thank goodness for all the good medics around and for all the excellent guidance and support found on this forum. Wholeheartedly agree with Sheena that things in general have improved a great deal for those newly diagnosed now.

I wasn't told a great deal in 1989, I wasn't even in my home town when I was diagnosed, but in a hospital in the north east and very scared and frightened, not knowing what to do and what was happening. The hospital gave me injections, I was then told I had to do it myself, injected in my leg and some blood dripped down my leg. I wouldn't say I felt informed or guided by anyone, and when I eventually went back to my sister's( I was advised not to travel back home straight away) when I went out and about, exercise , I felt very perculiar, which was my 1st hypo!!!!! we went off to my sisters doctor who told me I needed to reduce insulin by 2 units. So, I am glad for these forums and a lot more information and technology nowadays, thank goodness🙂 Sheena

 

[AlisonM]

The information I got shortly after diagnosis was excellent, just not for my type of Diabetes. After I came home though the information and support offered was very poor indeed. Most of what I learned was as a result of my own research and the exceedingly well informed denizens of this asylum.