[Gary_W]

Hi,

Anyone in the world can partake in the thread, but I'd appreciate it if the voting could be UK only please as I'm really interested to see if the 'healthcare lottery' is as alive and well as I believe it is or if everywhere is as bad as here.

I think we can all agree that education is of the utmost importance to be able to manage diabetes properly. If you are provided with the education needed, you then have a choice to either follow that advice or not.

I personally feel very well now for the first time in years. I don't know what my current HBA1c is (my clinic refuses to do one as it's only 4 months since my last go, despite all the changes I've made) though my last one was 6.5, down from 8.1 and going by my meter averages I will be amazed if I'm above 6.0. I used to run between 2.5 and 18, and rarely managed to hit anywhere in the middle. It is now rare that a post-meal spike goes above 8.0, and it is rare that I am not at pre-meal levels 2 hours after eating and then I stay there. I have lost around 35lbs in weight (I'd like to lose another 15 and it's going slowly so I'll get there). I no longer over-treat hypos and therefore never spike on the rebound. In all, I am keeping far better than I ever thought possible.

The thing that caused all of the above was information learned from this site (and research prompted from it). The thing that caused my problems before was listening to my healthcare team and not doing my own research. I have always had the motivation to get my diabetes under control; feeling ill in the 'here and now' is reason enough even before you consider the possibility of complications. It was just I did not understand some fundemental things regarding how to use insulin and how to count carbs.

At many centres in the UK, DAFNE is taught. If you want more details go here: Welcome To The Dose Adjustment For Normal Eating (DAFNE) Website

The problem with this is that it is essentially a full 1 week course on carb counting / insulin management. It uses 'carb portions' where 1 carb portion is 10-12g of carbs and then it says you have a ratio of either 0.5, 1 or 1.5. Now for my ratios, this means it just plain doesn't work as they are all over or under my actual numbers so it just makes things harder.

According to the DAFNE website, there are 4500 odd people that have been on the courses. It's not clear to me if this is worldwide or UK only, but either way this is a really small number of people. There is a long wait for the course, and would I really want to spend 9-5 for 5 days in a row learning how to carb count???

Unfortunately at my local clinic, they will not go into carb counting or dose adjustment at all unless you attend the DAFNE course. It is almost as if they believe that the average person with diabetes is of sub-normal intelligence and would not be capable of acting on the information without a 1 week course. In the absence of going on the DAFNE course, you therefore get NO education (at least where I live). It was a chance comment from a doc in a desperate phonecall that told me that there was any kind of relationship between carb content and insulin. Until that point, I had been guessing. Without my own research, I would still be in deep trouble; my education provision within the health service has failed completely in my opinion.

When I (finally) got an appointment to see a nurse who was DAFNE trained (for an assesment to see 'if I would benefit from a DAFNE course') I was told that I was doing everything wrong. I must not test more than 4 times a day (she was horrified when I confessed to anywhere between 7 and 10 per day). I must not do correction doses (not that you'd know to need them as you are to wait until your next meal and if that test is high give extra insulin and carry on regardless). I must use CHO portions rather than count carbs in the 'complicated' way I was doing it. You absolutely do NOT need to inject anything for protein content in food, as it is only carbs that affect BG. 1 unit of insulin 'will drop you between 2 and 3 points (36 and 54 in US terms). No matter who you are.... 10g of carbs will raise you by the same amount, no matter who you are.... She was stunned when my HBA1c came back at 6.5 as that was the 'lowest she had ever seen in a type 1'. No idea if that's true or not, but it's what I was told. She still insisted I was doing it all wrong as DAFNE teaches it differently.

Is it just my clinic that is this bad? Do I have unfair expectations? I look forward to your replies.

I'm sorry for the long, rabid rant. I cannot get an appointment there for love nor money and all I want is an HBA1c via a fingerprick to see how I'm doing on an 'official' level. Yes, I know I'm doing fine but a little bit of mental encouragement is never a bad thing. I don't ask them for much and get even less it seems. I asked if I could pop in and do this Takes 5 mins. Apparantly costs too much, and has to be authorised by a consultant. As I had one 4 months ago they certainly wouldn't consider it

Gary

[LancetChick]

I'm not going to vote in your poll since I'm not in the U.K., but if that were a poll for Americans, I'd check the "bordering on dangerous" box. Medical professionals are neanderthals, and I don't believe it's possible to achieve maximum health following their advice. I have learned to disrespect doctors utterly, although I may possibly be induced to trust one if I had a disease I had no control over, like cancer. But knowing what I know now, I'd still do my research and watch for blundering errors.

[princesslinda]

Not voting, as i'm T2 in USA. I do, however, feel that the diabetics education I received was certainly not enough to help me successfully maintain my A1Cs at a level acceptable to me.

I was told to only check my blood sugar once a day and once it comes in line, everything else will follow. A1Cs 1-2 times a year unless blood sugars are running high.

I was told I could eat anything I wanted, just in moderation. I was told to have 45-60 carbs/meal and that I could have dessert regularly. After about a month of doing things "their way," I had high blood sugars and didn't feel very good. Had I continued in this manner, I would have most certainly been on more medication and would have definitely had higher A1Cs.

Even now, with my doctor telling me I have excellent control, I am discouraged from testing more than once a day (I test at least 4/day). I was told any A1C under 7 was fine, that there was no point in obsessing about diabetes, just do the best I can. He does, however, write my strips for the amount I feel I need.

A family member was recently told "eat what you want, i'll adjust your medications accordingly."

The most valuable/practical information I received has been from this forum and from my own reading and research.

I think doctors have no clue as to how to motivate/educate diabetics to manage their situation (i'm referring to T2s here, as that's my "area of expertise"), and really don't think we are capable of doing so. Perhaps that's because of some of their past experiences with non-compliant patients. God help us all. If we didn't have each other to learn from, what would become of us!

[klpants]

Good post Gary. My exeperiences have been probably 15%positive and the remainder negative. I've been told/asked:
-not to test,
-why do I test so much
-to give myslef extra insulin at lunch which I know would result in a dangerous low
-I could bankrupt the NHS with all the tests I do (Don't I pay for my NHS treatments in my taxes???, not really a free service!)

So yes not very good, I compare to the treament I got in Canada which was suberb compared to my treatment here. But I believe diabetes treatment in a lot of countires is poor, especially backed up by people's post on this forum.

BTW, really don't understand why you can't get an HBA1C, it's no big deal for your hospital docs to do one. If you still can't get one, I've bought them off ebay.com in the past and are pretty accurate.

You just have to keep pushing with your health service, don't give in! Tell them you pay for you HBA1C test in your taxes, this seems to work!

Oh, and DAFNE bit silly having to take a week off work, if you really wnated and had the ability to you coudl learn how to carb count via the Internet and this forum.

[sofaraway]

Gary, can you go to your Gp surgery and just get an HbA1c done? I just book an appointment with the nurse and tell her what I want when I arrive, never had a problem before.

When I was diagnosed at age15 (2000), I had virtually no education, i met with the childrens diabetes dietician once and that was it until june last year.

last year in june i went onto insulin, I met with the diabetes nurse and she showed me how to inject and gave me set starting doses. I was there around 40 minutes. she said she was surprised because she normally takes around 2 hours with people going newly onto insulin. I was already a member here so I already had alot of knowledge and I refused to go onto mixed insulin, which the doctor had prescribed (before discussing with me first). Had I not been a member of this site I would have just gone along with what the team said.

From a couple of weeks in I started moving away from the set novorapid doses, i was guestimating and eyeballing my food (which i still to do a large extent). after a couple of months i'd worked out my I:C ratio.

when i went back to my nurse after a couple of months, she said I was doing fantastically, she was amazed that i was doing corrections (which she didn't have a problem with), and that I had worked out everything on my own (through this site). was told that I should not test anymore frequently as she was worried about my being obsessive, I was testing 4-6 times a day. she only wanted me to do 4 times.

I was put on the waiting list for DAFNE (although my hospital calls it the INSIGHT course i beileve) since june 2006 and haven't heard yet where I am on the list, still waiting. At my hospital i think it's 1 afternoon per week for 4 weeks. I would still like to go even though i probably don't Need to.

sorry didn't think this post would end up so long!

if I hadn't been highly motivated, didn't have the prior knowledge, or this site, my education alone from the NHS would likely have seen me in a mess.

[DeusXM]

Really, it depends where you are in the UK. It also depends on how responsive your care team is to your proactive actions.

I've experience of clinics in both Gloucester and Exeter. The experience has been very different in both.

The clinic I was at in Exeter was at the Royal Devon and Exeter Hospital, which is closely affiliated with the Peninsular Medical School. You may or may not recall seeing PMS mentioned here on this board before since they have fingers in a lot of front-line research to do with diabetes. At Exeter I was introduced to Lantus, was one of the first people in the country to go onto Levemir and it was also the only clinic I've been to where I've had anyone involved in diabetes take my suggestion of 'surely I don't need to stuff myself with bread all the time?' seriously. I was also offered the option of going onto a DAFNE course but I couldn't be bothered and it was agreed that I already could cope with the idea that different sized meals required different sized boluses.

At Gloucester I have also generally had a good experience although I've found that the staff are a little less inclined to communicate with their patients. At Exeter I could ask my nurse for my last results and she'd just email over the raw data of everything about me from my last blood and urine tests - HbA1C, creatinine, TSH, cholesterol, everything. My current clinic in Gloucester initially had trouble getting over the idea that [b]I[/i] would like to know my A1C (although part of that was a communication breakdown between my GP surgery and my hospital clinic - I get the impression they're having a little turf war over who gets me, or more precisely, who doesn't get me!). However, like Exeter, Gloucester took my concerns with regards to insulins seriously. Both accept I've had problems with Lantus and Levemir and don't try to make out it's all in my head. Gloucester has even offered me a pump on the NHS.

I also went on a 'bite-sized' carb-count workshop at Gloucester to show I was serious about considering a pump, although that workshop turned out to be a bit of a disaster. Although it explained the theory very well, I felt the whole point of the workshop was undermined by the constant assertions that all meals should be based around starchy carbs. When I pointed out that the whole point of the workshop was that we could actually choose how many carbs we wanted to eat (and even go without, if we felt like it), surely it wasn't necessary to base around starchy carbs. I was then told it was essential because it would stop you going hypo, so I then pointed out the whole point was that if you matched your basal insulin to your basal output and your bolus insulin to your carb intake, you shouldn't go hypo. At which I was told that was why we were doing the carb count workshop.

In my experience though there are two defining factors that determine the level of care you receive on the NHS. The first is the location - I've found that GP clinics are about 10 years or so behind hospital clinics in terms of knowledge, and that hospital clinics vary from being right up to date to being about 2 years out of date, depending on who's working there. The second factor is how proactive you are. Every clinic I've been to has always started out looking like they're going to offer the bare minimum until you start putting forward your own ideas. Once you start making your own suggestions, they really raise their game. How much you have raise your game depends on the person there - at Exeter it was a case of doing my own Levemir research (before it was NICE approved) and asking about it, at Gloucester it was daring to suggest (in this carb counting workshop!) that FBGs weren't necessarily a good indicator of correct amounts of basal insulin because of potential Dawn Phenomenon.

The single biggest factor is taking your own responsibility. At both clinics I've been in I've done well (slight blip this month in that my A1C has gone up from 6.7 to 7.1, which I'm not happy about but I know why it's happened) but I've seen plenty of people who haven't, despite the fact they see the exact same people and get the exact same information. Keep pressing for an A1C. The NHS is a lot like a difficult woman who won't go out with you - the more persistent you are, the more likely they'll give in and give you what you want!

[HelenM]

Not in the UK.I 've had excellent medical care here in France and am very glad I didn't have to risk the post code lottery but I'm still to a large extent self educated.
I was initially taught the basics in hospital and initial insulin dosage worked out. Scared and not being fluent in French, I did my own research,and taught myself carb counting, dose adjustment and learned about correction doses.
Recently, I had a weeks education, which would have been excellent, eighteen months ago. It had sessions on nutritional needs,glycaemic index, complications, insulin action, exercise, DKA etc.
There were a couple of sessions on carb counting but not really linked to dose adjustment. The standard treatment method is a predetermined number of carbs each meal with insulin adjusted according to preprandial BS, exercise etc.(and to be honest thats what I do for the majority of meals)
The dietician tried to get people to use a 1-10 ratio for an experimental meal but I feel that she was herself experimenting and she didn't explain it very well .
I read that some French doctors want to introduce a DAFNE like course but there is resistance. Other doctors feel that carb counting/dose adjustment only succeeds 'if the person has both high motivation and high intellect!' I don't know about the high intellect but I was surprised that the others on my course wanted to be told what to eat and how much insulin to take. They were very reluctant to self adjust even in a limited way.
It maybe that the people on this forum are the exceptions, they're certainly motivated.

[SueM]

Originally Posted by Gary_W

Hi,

Anyone in the world can partake in the thread, but I'd appreciate it if the voting could be UK only please as I'm really interested to see if the 'healthcare lottery' is as alive and well as I believe it is or if everywhere is as bad as here.

I think we can all agree that education is of the utmost importance to be able to manage diabetes properly. If you are provided with the education needed, you then have a choice to either follow that advice or not.
I tend to do my own things and have lived to tell the tale most of the NHS advise is **** boardering on dangerous
I personally feel very well now for the first time in years. I don't know what my current HBA1c is (my clinic refuses to do one as it's only 4 months since my last go, despite all the changes I've made) though my last one was 6.5, down from 8.1 and going by my meter averages I will be amazed if I'm above 6.0. I used to run between 2.5 and 18, and rarely managed to hit anywhere in the middle. It is now rare that a post-meal spike goes above 8.0, and it is rare that I am not at pre-meal levels 2 hours after eating and then I stay there. I have lost around 35lbs in weight (I'd like to lose another 15 and it's going slowly so I'll get there). I no longer over-treat hypos and therefore never spike on the rebound. In all, I am keeping far better than I ever thought possible.
Simple solution to A1c ask your GP to run one for you
The thing that caused all of the above was information learned from this site (and research prompted from it). The thing that caused my problems before was listening to my healthcare team and not doing my own research. I have always had the motivation to get my diabetes under control; feeling ill in the 'here and now' is reason enough even before you consider the possibility of complications. It was just I did not understand some fundemental things regarding how to use insulin and how to count carbs.
Carb counting has been around for decades even though the medical profession seems to have forgotten about it. They call it DAFNE now lol but it is 1 and the same thing.
I have carb counted since 1965.(well my Mum did then lol)
At many centres in the UK, DAFNE is taught. If you want more details go here: Welcome To The Dose Adjustment For Normal Eating (DAFNE) Website

The problem with this is that it is essentially a full 1 week course on carb counting / insulin management. It uses 'carb portions' where 1 carb portion is 10-12g of carbs and then it says you have a ratio of either 0.5, 1 or 1.5. Now for my ratios, this means it just plain doesn't work as they are all over or under my actual numbers so it just makes things harder.
I have always found it is best to be proactive yourself and have the attitude what the tin Gods don't know wont hurt them Thus do what suits you and not what is writen down in their little book.According to the DAFNE website, there are 4500 odd people that have been on the courses. It's not clear to me if this is worldwide or UK only, but either way this is a really small number of people. There is a long wait for the course, and would I really want to spend 9-5 for 5 days in a row learning how to carb count???

Unfortunately at my local clinic, they will not go into carb counting or dose adjustment at all unless you attend the DAFNE course.
Again what they don't know wont hurt them.
I have never asked a GP/clinic or nurse how to alter my insulin and I do not go into details of how I manage my diabetes.
Infact I never attend any clinics.
Last consultant I saw I told him to go teach his Grandmother to suck eggs
They prob wont go into carb counting or DAFNE because they know nothing about it and don't want to admit it

It is almost as if they believe that the average person with diabetes is of sub-normal intelligence and would not be capable of acting on the information without a 1 week course.

Ah but they do believe that
In the absence of going on the DAFNE course, you therefore get NO education (at least where I live). It was a chance comment from a doc in a desperate phonecall that told me that there was any kind of relationship between carb content and insulin. Until that point, I had been guessing. Without my own research, I would still be in deep trouble; my education provision within the health service has failed completely in my opinion.

When I (finally) got an appointment to see a nurse who was DAFNE trained (for an assesment to see 'if I would benefit from a DAFNE course') I was told that I was doing everything wrong. I must not test more than 4 times a day (she was horrified when I confessed to anywhere between 7 and 10 per day).
Wow my practice encourages me to test my blood sugar and have no qualms about 8/10 times/day. I must not do correction doses (not that you'd know to need them as you are to wait until your next meal and if that test is high give extra insulin and carry on regardless). I must use CHO portions rather than count carbs in the 'complicated' way I was doing it.
Sounds as if they not know what they talking about.
I have to ask why if people do not carb count what is the point of having Lantus and a quick acting insulin which can involve up to 6 injections a day. When they could get the same result with 2 or 3 shots a day on a fixed insulin dose? You absolutely do NOT need to inject anything for protein content in food, as it is only carbs that affect BG. 1 unit of insulin 'will drop you between 2 and 3 points (36 and 54 in US terms). No matter who you are.... 10g of carbs will raise you by the same amount, no matter who you are.... She was stunned when my HBA1c came back at 6.5 as that was the 'lowest she had ever seen in a type 1'. No idea if that's true or not, but it's what I was told. She still insisted I was doing it all wrong as DAFNE teaches it differently.

Is it just my clinic that is this bad? Do I have unfair expectations? I look forward to your replies.

I'm sorry for the long, rabid rant. I cannot get an appointment there for love nor money and all I want is an HBA1c via a fingerprick to see how I'm doing on an 'official' level. Yes, I know I'm doing fine but a little bit of mental encouragement is never a bad thing. I don't ask them for much and get even less it seems. I asked if I could pop in and do this Takes 5 mins. Apparantly costs too much, and has to be authorised by a consultant. As I had one 4 months ago they certainly wouldn't consider it
Just ask your GP for an A1c a consultant does not have to authorise it, my practice nurse will scrible out a request form when asked as will GP
Gary

My previous GP was an A hole as was the whole practice.
But my present GP and whole practice is very good GP knows nothing about diabetes and admits it, but does ask his partners if needed.

I am due to go into hospital on Monday for major surgery.
I find it very worrying that the surgeon didn't even know what a glucose monitor was or how to adjust insulin dosages on amount of food consumed etc. Trying to get a Jr Dr to understand that I did not have a fixed dose of insulin was nearly imposible. I was so good though I didn't ask if he was thick or just stupid But I do find it worrying that in a big teaching hospital the knowledge was so lacking.
I am going to see the diabetes team on Monday so fingers x'd they know what they are doing. If not I will walk out and scrap the surgery.

Over all though it does seem as if the whole diabetes care system in the UK leaves a lot to be desired.

[sofaraway]

Originally Posted by SueM

I am due to go into hospital on Monday for major surgery.
I find it very worrying that the surgeon didn't even know what a glucose monitor was or how to adjust insulin dosages on amount of food consumed etc. Trying to get a Jr Dr to understand that I did not have a fixed dose of insulin was nearly imposible. I was so good though I didn't ask if he was thick or just stupid But I do find it worrying that in a big teaching hospital the knowledge was so lacking.
I am going to see the diabetes team on Monday so fingers x'd they know what they are doing. If not I will walk out and scrap the surgery.

.

i would advise that you get the doses of insulin written up on your drug chart with a wide range for each meal, then you can decide what to give. Also get your bolus insulin written up on the PRN/as required side, so that if you want to eat an extra snack or correct you will be able to. hope your surgery goes well.

[REDLAN]

well I'm from the UK. And yes I have heard of DAFNE - it's from Germany, and yes I have been on the carb counting course, complete with the DAFNE plates.

Everything you say is true - yes they do teach 10g = 1 CHO portion, they also teach 1:1, 3:2, and 2:3, ratios, and they do teach to correct at meal times. The correction dose values actually come from the experience of pumpers, and a 2-3 mmol unit drop per unit is fairly typical. As far as the number of tests , the nurse on my course said it was a minimum of 4 tests per day, and it was useful testing post-prandials as well.

The reason for this, is pretty clear from the people who came on the course with me - some people find the maths really hard to do, and the dafne system is relatively simple - I can see why they teach corrections at meal times - it's safer - prevents a double insulin peak.

Regardless of the views of the people on this forum, there are a fair chunk of people who would struggle to test more than 4 times a day, find carb counting complicated, and don't weigh their food regularly - for these people the DAFNE course is better than what they were doing before.

Me personally - I have adapted what they taught - I do use CHO portions but count in 1/2 - knowing carbs to the nearest 5g is plenty accurate enough - I use a ratio ranging from 0.5 units per CHO up to 1.0 - I adjust my ratio in 0.1/0.2 increments which provides more than enough accuracy. (I have a look up table so I can work out units per carbs). I don't count carbs in vegetables either unless they are in a readily digestible form - i.e. pureed in soup - find otherwise this is the best way to give yourself a hypo - I only count the medium GI foods and above. Protein I don't bother to bolus for - I can't detect a discernible BG rise - besides which novorapid is just too fast even if there was a rise.

I don't always correct at mealtimes - I do correct in between if needed - I test between 7 and 10 times per day depending on need. For correction dose I use a range - typically 1 unit of insulin will correct between 2-3 mmols - I've tested it and calculated it and correction doses NEVER, NEVER produce the same lowering - and there appears to be no discernible pattern.

The good thing about the course is the teaching around estimating carb content of meals - we practiced guessing carb contents of meals - this is a big bonus when I go to friends, or to restaurants - judging by the post-prandials, I'm usually within 10g which is pretty good.

Contrary to your experience my nurse is absolutely fine with the changes and strategy that I have used. So I guess like many things it depends on the professionalism of the staff on the front line determine how good your experience is.

[DeusXM]

The reason for this, is pretty clear from the people who came on the course with me - some people find the maths really hard to do, and the dafne system is relatively simple - I can see why they teach corrections at meal times - it's safer - prevents a double insulin peak.

As I said, it's sorta a case of you get out what you put in. If this forum has only taught me one thing (and it's taught me far more than that), it's that pretty much everyone here who is a regular poster is NOT your average person with diabetes. It might sound like intellectual snobbery but I'm convinced that probably something like 90% of all diabetes patients simply don't 'get' it. It's not so much a question of maths, it's a question of mindset. The vast majority of people with diabetes who I've met in real life (which admittedly isn't many) simply don't seem to make the connection in their head about how their blood sugar level relates to them and how they treat it. I don't blame many doctors at all for their attitude of keeping things back - they've probably found that most of the time they're wasting effort trying to explain things to people and it's a case of trying to patch up as best they can.

I know we'll all probably laugh at this but there are just so many people out there with diabetes who simply don't seem to understand that a giant plate of pasta, potatoes and garlic bread might affect their BG - after all, they've been given a pill to take, so it's all ok, right?

The NHS isn't perfect when it comes to diabetes care but how well it works is really down to the legwork you're prepared to put in to dealing with your condition. Frankly I consider myself lucky that there's so much I can personally do to deal with my health and that I have a health system that lets me get on with doing just that.

[Gary_W]

Thanks for all the replies so far. All interesting reading (as is usual).

As to my HBA1c, I will certainly find another way of skinning the cat and that will probably be my GP. It's just a shame that a full blood test is going to be done and sent to a lab as opposed to a fingerprick and results in minutes (I was severely needle phobic at diagnosis and whilst I will cheerfully stick pins in myself all day long I still dislike 'proper' blood tests so a fingerprick really appeals on that level). I also find it hard to believe that the former is cheaper once you've considered everyone's time, but I guess it's possible.

Redlan- regarding the correction doses I know what you mean. With me, if I'm under 10 then 1 unit of insulin drops me by around 2 points. This seems pretty consistant. I'm typically having to put 1u in at about 10pm each night as my Lantus has run out (just) and splitting it isn't worth it for me as everything else is perfect. It always drops me by 2, which is just as well as I'm usually correcting a BG of 6.5 before bed! Doing this, waking up at 4.5 - 5 happens consistantly. If my BG is over 10 then I agree the correction factors go way out and it's a 50/50 thing for me to get it right. It just seems that the rules don't apply any more and then they change regularly.

I read recently that 10% of the NHS budget is spent on treating illness that is related to diabetes in one way or another. As many of us struggle to get appointments at clinics and some people still have hassle getting test strips (not me, I've a decent GP and have read the sticky ) I would say that the bulk of this huge spend goes on dealing with the long term effects of badly treated diabetes. Whilst I agree with Deus in that many people with diabetes do not seem to look after themselves, I would bet that a significant number of those badly managed individuals would improve if they were given a better education in the basics. Even if you told someone 'go and buy John Walsh's book 'Using Insulin'' then it would be a start as those motivated enough to buy it would learn an awful lot.

It seems that huge budgets are flung at health education in terms of giving up smoking, the dangers of drugs and sex education. In all three cases, the target audience doesn't want to listen and the message repeatedly fails but we still try to get the message across; the huge benefits in catching the odd few that are receptive to the message justifies the cost. It must do or it wouldn't continue in these cash-strapped times. I just feel that in diabetes care they have largely given up. I think they are too busy firefighting and trying to pacify a ridiculous waiting target that the lowest common denominator wins again. Why is it that I should miss out on education purely because some of the people turning up at the clinic are either too daft or too demotivated to want it?

Whilst I agree that it is down to the individual to seek help and learn all they can, in my situation I was resigned to always feeling ill; I was told that my 8.x HBA1c was much better than most peoples so I must be controlling myself pretty well. Little did I know. It is very difficult to go against suposedly professional clinical advice until you've done it and found it to work. Once you've crossed that particular bridge the blinkers come off and you treat everything with a healthy amount of sceptisism. I just shudder to think about the fact that I could still be there myself and an awful lot of other people are accepting that 'this is just the way I'm going to feel from now on' because they are told that they are managing themselves pretty well.

There are certainly some centres in the UK that go the extra mile. Up in Leeds, there is a website that has some good information on basal testing etc. My education on setting your basal was 'keep on increasing the basal until your morning BG is within limits. Once it is, your basal is correct'. Using this method, I was injecting 35u of Lantus each night. My basal is now 18u, correctly set using fasting test advice from here. I had always been convinced that fasting was impossible with type 1. I believed that if I didn't have carbs every couple of hours I'd go hypo. Those extra 18u of Lantus helped that myth to persist, and again the info given from the clinic (eat regular sources of carbs, little and often) is reinforced. I don't eat now unless I'm hungry or hypo.

I don't know whether I am wanting to kick the local healthcare providers for their lack of education provision or kick myself for not questioning their ability sooner. I'm just really upset at the moment when I consider how long I felt ill for and how much damage I have already caused to my body. And for what?

That's 2 rants in a day then...

Gary

[SueM]

You have to remember though Gary that the UK is very much a nanny state and you are not expected to think for your self, but if you do that's when the trouble begins.
Once people get into a mind set it is very difficult to break that mould. People do tend to be like sheep and just follow the leader ie the diabetes team. (A) because they know no different. (B) they feel so unwell they can't be bothered. (C) The Dr knows best! (well he thinks he does).
The NHS staff are very much in the mode of they know best so do as you are told, even if they learnt about diabetes in 1066. There is no or very little room for anyone who can and does look after themselves.
When I was told the nurses were going to take over my diabetes care whilst in hospital I did ask ever so politely why they thought I was incapable of doing so myself, considering as I managed every day at home without their interference.
They were also told very firmly they were not taking control. It went down like a lead brick.

[mg_2204]

Lived in England for 8 years. I was already diabetic when I arrived. I had the best diabetic follow up over there. 5 stars! I learned a lot because the nurse, and the doctor took the time. I must admit, one must want to learn too. You just can't expect others to come to you and do the work for you. I never heard of DAFNE. Had I been newly diagnosed or diagnosed in UK perhaps I would have been offered the course?

[shabbie6247]

this is an excellent thread!

its scary that so many of us feel that the healthcare in this country is **PANTS!**.

on diagnosis last year i was given
1. a fistful of information brochures (complications, suggested starting diet[50% carb intake! no sugar], the different types of diabetes and how they might be treated)

2. a glucose monitor

3. a packet of metformin

4. a full spectrum of blood tests to send to clinic (about 6 weeks later)

once i was put on insulin my appointment with the diabetes nurse to teach me how to take it and rough starting dosages for each meal [based on the food i told her i was eating at the time].

clinic appointments.....none since september last year......appointments in nov/jan/mar/may have all been postponed until a later date (next one is at end august) (i suspect this is to shorten waiting times for newly referred patients!)

education....well, if i ask for help from the family doctor, practice nurse, or diabetes nurse the help is there. after my hard work and much studying my A1c's are pretty good (docs and nurses are all very happy) otherwise if you dont ask for help you get no further education, or if you have bad blood results i suspect you would be taken in hand given a stiff talking to. but my suspicion is that (locally) further education is not an option. i have not heard of any other clinics until i spent time in this forum. (turns out there is a DAPHNE clinic about 50 miles from me, but i had to search on the net for this info!)

the 'using insulin' book should be given out with your first pack of needles and insulin.
and the DF web address should be given to everyone! its thanks to everyone on DF that i find managing my D much easier now...everything makes sense at last!