An open letter to Diabetes UK

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everydayupsanddowns

everydayupsanddowns

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Hello all

I'm sending an open letter today to Diabetes UK, the editor of Balance, my MP and the Minister of State with responsibility for Diabetes to ask for a review of the information given to patients who are started on basal-bolus insulin regimes without any guidance about counting or matching carbs to the doses they are advised to take.

Many thanks to all here who shared their experiences and patiently worked through my disbelief that people are put on basal-bolus with no carb counting guidance.

Life with diabetes is difficult enough. But to ask people to keep tight control without measuring/monitoring their carb intake is just crazy.

If anyone is interested in the letter it is here:
http://www.everydayupsanddowns.co.uk/2010/09/not-counting-cost-open-letter-to.html
 
Brilliant stuff, I hope some good comes of it in the whole area of diabetes education. As a type 2 I did one days education when I was first diagnosed, and found a course that I did earlier this year that my GP thought was un necessary and rubish because he hadn't heard of it. Most of the information I have comes from picking my way through a variety of forums but mainly from here. I'm sure others can tell you similar storites.
 
Your many points were conveyed effectively............good job.......
 
Excellently put every i just hope it does some good x
 
Excellent letter and covers the subject well. Hope they all have the decency to respond and give a full explanation why this advice is not given out to those that are newly diagnosed. Without doubt courses such as Dafne should be made available from the start, it covers just about everything that a type 1 needs to know and could potentially save the NHS tens of millions of pounds in the long term, simply by preventing or decreasing the incidences of complications due to the uncontrolled diabetes. In a discussion with my own dsn, I was told that funding was the biggest issue why Dafne is not rolled out across the country, very sad but true and the saying 'can't see the wood for the trees' springs to mind! Toby.
 
toby said:
Excellent letter and covers the subject well. Hope they all have the decency to respond and give a full explanation why this advice is not given out to those that are newly diagnosed. Without doubt courses such as Dafne should be made available from the start, it covers just about everything that a type 1 needs to know and could potentially save the NHS tens of millions of pounds in the long term, simply by preventing or decreasing the incidences of complications due to the uncontrolled diabetes. In a discussion with my own dsn, I was told that funding was the biggest issue why Dafne is not rolled out across the country, very sad but true and the saying 'can't see the wood for the trees' springs to mind! Toby.
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I am DAFNE veteran, but I think together with finacnial restraints, staffing is a problem..........healthcare pros need to be trained up, this takes them away from thier normal duties, etc....

A basic introduction would suffice, but if dafne is available, take it as it gives you a much better understanding of all aspects of the condition.....personally it turned my diabetes around...
 
novorapidboi26 said:
A basic introduction would suffice, but if dafne is available, take it as it gives you a much better understanding of all aspects of the condition.....personally it turned my diabetes around...
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That is exactly my feeling NRB. To give people no information because a full-on dafne course is too expensive is ridiculous. All DSN/GPs/Nurses should have enough knowledge to give a basic overview of the principles. This need take no more than a few minutes.

For those that want to dig deeper, tighten control, or need extra help Bertie/Dafne etc are brilliant. But you can't say, "we don't do carb counting in this area". That's just bonkers.

M
 
novorapidboi26 said:
I am DAFNE veteran, but I think together with finacnial restraints, staffing is a problem..........healthcare pros need to be trained up, this takes them away from thier normal duties, etc....

A basic introduction would suffice, but if dafne is available, take it as it gives you a much better understanding of all aspects of the condition.....personally it turned my diabetes around...
Click to expand...



It certainly turned my diabetes around too, and can see your point about staffing problems and them being taken away from their normal duties. Perhaps the personnel on these courses should be solely there to teach Dafne and free up the other staff to focus on clinics and ward duties, but again this may come down to funding. Given the impending spending cuts due to be announced soon by the government, most departments will be tightening their belts and health will be no exception, so the chances of more courses being made available in the near future may not materialise, which is a great shame for those that could benefit. Toby.
 
toby said:
It certainly turned my diabetes around too, and can see your point about staffing problems and them being taken away from their normal duties. Perhaps the personnel on these courses should be solely there to teach Dafne and free up the other staff to focus on clinics and ward duties, but again this may come down to funding. Given the impending spending cuts due to be announced soon by the government, most departments will be tightening their belts and health will be no exception, so the chances of more courses being made available in the near future may not materialise, which is a great shame for those that could benefit. Toby.
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What I would say is that I would be more than willing to take some time out to help people who want to learn dafne, with the supervision of a trained dafne educator of course.............
 
Well expressed everydayupsanddowns; thanks for posting link here. Hope those who need to take notice do so.
In the meantime, perhaps the only helpful suggestion is to use online carb counting courses eg http://www.bdec-e-learning.com/ By the way, online self-guided-learning is very cost-effective, so I can't understand why it isn't pushed by all diabetes clinics attended by people on insulin.
 
Great letter Mike, I hope they listen to it!

Just to let you know there is a rogue 'g' in the word instructed, just in case you missed it.

Have you been on the Dafne course yourself mike, or did you learn from the exchanges you were taught when diagnosed?
 
katie said:
Just to let you know there is a rogue 'g' in the word instructed, just in case you missed it.
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Thanks for that! Drat those last-minute alterations... Fortunately it wasn't on the printed letters that got sent 😱

That would have been really silly.

M
 
No worries, just thought i'd point it out incase you did send it off like that :D
 
Mike,
Well done, will be interesting to hear what response you get from the different recipients.

toby said:
It certainly turned my diabetes around too, and can see your point about staffing problems and them being taken away from their normal duties. Perhaps the personnel on these courses should be solely there to teach Dafne and free up the other staff to focus on clinics and ward duties, but again this may come down to funding. Given the impending spending cuts due to be announced soon by the government, most departments will be tightening their belts and health will be no exception, so the chances of more courses being made available in the near future may not materialise, which is a great shame for those that could benefit. Toby.
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Actually when I attended my local equivalent of the dafne course I thought that one of the biggest plus points of the programme was that it was taught by a DSN and dietician who were both active in the clinic and could therefore use their experience to provide examples and anecdotes to support what they were saying. I think that extra insight is key to the course being taught well. Of course it does rely on the medical staff involved being good teachers.

One of the other main benefits of attending the course was actually meeting other type one diabetics in an environment where we was comfortable sharing our experiences, concerns, problems and tips about living with diabetes. It is also the benefit of this that makes this forum such a worthwhile endeavour. 😎
 
I agree rossoneri, it's great that the DSNs and Dieticians are the same people you see in the clinic. It's like having a second family, it's quite odd when you walk into a hospital and a nurse says hi katie!
 
rossoneri said:
Actually when I attended my local equivalent of the dafne course I thought that one of the biggest plus points of the programme was that it was taught by a DSN and dietician who were both active in the clinic and could therefore use their experience to provide examples and anecdotes to support what they were saying. I think that extra insight is key to the course being taught well. Of course it does rely on the medical staff involved being good teachers.
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I couldn't agree more rossoneri, I was picking up on the point that novorapidboi26 said about taking staff away from their normal duties to run the courses. Nothing can beat hands on experience, and those in the front line of diabetes care are obviously the most suitable candidates to teach the principles of Dafne, but to roll-out more courses would mean that these nurses spend less and less time in clinics and wards. My hospital has 2 Dafne trained nurses out of 5 dsn, and I believe that they run a course every 6-8 weeks, which as I said earlier is sadly due to funding and probably staff shortages. Should more funding become available by the government and more teaching courses are rolled-out nationwide, it would be paramount to train more nurses so that a rota system could then be put in place to keep these people in everyday duties for the reasons you stated, failing that the only alternative as I said in my post is to have teachers who are solely there to teach the Dafne programme. Toby.
 
toby said:
My hospital has 2 Dafne trained nurses out of 5 dsn, and I believe that they run a course every 6-8 weeks, which as I said earlier is sadly due to funding and probably staff shortages.
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I can see the issue with providing full-on Dafne style courses to everyone at diagnosis, but for me this is not the issue. Dafne sounds excellent, but I don;t feel is it essential for everyone from day 1

What IS essential is for people to know, from the outset, that they need to measure the quantity of carbs they are eating. And that costs nothing. I have no problem with people geing given fixed doses to start with. There is a lot to learn with diabetes, it's a steep learning curve. But to give people fixed doses of rapid-acting insulin and suggest that carb counting and/or dafne is something they might maybe think about 'at some point in the future' is completely insane. It borders on the negligent.

At diagnosis I had almost NO IDEA which foods contained significant carbs, or in what form (for a while I wondered if honey might be OK as a sugar substitute). I would have had no way of knowing if my meal contained 20g, 40g or 160g of carbs.

Rapid-acting insulin is potentially lethal if misused. And people are not being given the information they need to make informed judgements about their blood glucose results.

It is an outrage.

</rant> (again)
 
Excellent post everydayupsanddowns, and yes there does need to be some serious changes given what you have written. Toby.
 
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