Recent Posts - DAFNE Online

Nov 16, 2016

alturn 78 posts

Topic: Questions for HCPs / Statin effect on blood sugars

Put on Atorvastatin on diagnosis as T1, can't say it has any noticeable effect. But when BP meds were changed I thought there was a bit of increase in BGs, but all settled down after a while.

There could be other reasons - check injection sites as if lumpy can cause erratic BGs, are your BI/QA ratios etc correct? Other things can also affect BGs - stress, activity, mood, weather maybe.

Hope this helps.

Nov 15, 2016

Alan 49 284 posts

Topic: Questions for HCPs / Statin effect on blood sugars

I'm on Simvastatin - no noticeable effects on blood glucose.

Nov 15, 2016

chrisinbrum 41 posts

Topic: Questions for HCPs / Statin effect on blood sugars

I've recently started on atorvastatin, and I know there is a side effect that it may raise blood glucose. I'm finding control difficult at the moment - it may be a coincidence or it may be linked to the statin use, I'm not sure.

Is there a view among health professionals or other DAFNE graduates about how to manage any side effects of statins? Has anyone else noticed a similar effect?

Nov 14, 2016

JayBee 587 posts

Topic: General Discussion / Campaigning Against Hospitals Dropping DAFNE

Just saw this today. My experiences with my care team right now make some more sense.

http://www.bbc.co.uk/news/health-37943379

Absolutely disgusting.

Nov 12, 2016

JayBee 587 posts

Topic: General Discussion / Campaigning Against Hospitals Dropping DAFNE

To confirm, the CCG of my area have described the new education course as "our new expanded Intermediate Diabetes service" which doesn't describe much, and my current lead DSN is telling me that the new course is apparently like BERTIE.

Also, the Chief Executive of the CCG has told me that it is not under DAFNE:
~ after a diabetes service review, it was apparent that DAFNE had very low levels of uptake and that the delivery of care from single DSN running clinics in primary care was well received by patients and GPs. The CE went on to say that there were challenges due to capacity being restricted so patients' benefits were limited under the current system.
~ To address these issues, the CCG has started working with the James Paget Hospital Foundation Trust to develop a new model of care to accommodate the single DSN in primary care better to provide more benefit to patients. The idea being that they're closer to patients' homes.
~ These changes include incorporating a structured education programme that is not DAFNE, but it will incorporate themes and subject matter that is covered by DAFNE. Support will also be available to DAFNE graduates in order to "maintain improvements". He goes on to say that the new education programme will contain the same content with regard to dose adjustment and diet but will allow for some greater flexibility in the manner of delivery so more patients can benefit from the same learning outcomes I described in my initial correspondence to them which Peter helped me write.

I personally am not thrilled about these changes at all considering my GP surgery have always directed me to my DSN team at the hospital because they have continuously admitted that they don't know how to help their patients with type 1 diabetes with their issues due to being too different to patients with type 2 diabetes. Based on correspondence I have had with my lead DSN and new hospital consultant, it's quite apparent that they're keen to wash their hands of me and be super dismissive, instead of being helpful with dealing with my raised concerns - including my GP surgery's track record and these planned changes from the CCG coming into play.

Nov 12, 2016

Peter 109 posts

Topic: General Discussion / Campaigning Against Hospitals Dropping DAFNE

marke said:
I have answered on another thread but a quick statement. The replacement course is called DAFNEPlus and they have only just been awarded the grant to run it. Simon and I are involved as Technical Patients because we run DAFNEOnline. I am happy to share information on it, the people heading it are not secretive and want patient involvement. Hopefully things will start developing with it over the next few months,

Mark, I think JayBee is referring to a replacement course that James Paget are developing rather than to DAFNEplus. As with your case, they are saying that it will be based on DAFNE.

You correctly say that it the financial cost of participating in DAFNE that is the main reason for it being dropped. There is also a degree of "not invented here" amongst the medical staff, particularly when staff change in a DAFNE centre.

The sad fact is that, in addition to James Paget in Norfolk, which started this thread, there are three other services currently under threat:

Royal Berkshire in Reading
South West Essex
NHS Lanarkshire

This is known as each service has to give notice of their intention to terminate their DAFNE service to the Central DAFNE team.

In cases where this happens, the DAFNE Graduate Group will then look to confirm this information through Freedom of Information requests to the CCGs and Trusts involved. This then enables a campaign to be started to try an change the decision, as the information is then in the public domain.

JayBee and I have been doing this for James Paget over the last 6 months, but without success (so far). The DGG are now ready to start campaigning on the other centres listed above. If you're a patient at one of these and would be willing to help in a campaign against the decision, then please contact me through this thread, by a persoanl message in dafneonline or by e-mail at [email protected].

Many thanks.

Nov 11, 2016

DafnesHubby 1 post

Topic: DAFNE Graduate Group (DGG) / DAFNE Graduation Group Belfast 11/11/16

Ladies and gentlemen and me ðŸ‘¹
Thank you all for making this week good fun and enjoyable, I do hope we can stay in touch and support each other!!
Hope to catch up soon,
Greg.

Nov 11, 2016

novorapidboi26 1,819 posts

Topic: General Discussion / Campaigning Against Hospitals Dropping DAFNE

marke said:
sadly its not about attendance its about finance. The centres have to pay the DAFNE Programme fees for being allowed to run the course. Many centres have decided to invent their own courses that they don't have to pay for. In Kent its called KATIE ( Kent Adult Type 1 Education, I think ) and is similar to DAFNE. It has a waiting list of about 18 months. Quite a number of centres have gone solo over the last few years. A national programme would be better but in an organisation like the NHS bureaucracy trumps everything else, so Centres fall away without any real change in approach. But hey enough of my bitter twisted views

I will always be loyal to DAFNE but I suppose as long as the education is getting out there and its as good or better than DAFNE its not the end of the world....

What's to stop DAFNE trained HCPs educating people themselves...?

Is there any legal issues?

Nov 11, 2016

novorapidboi26 1,819 posts

Topic: General Discussion / Printing the Sick-day Rules

There's no rush, take your time...

Nov 11, 2016

Peter 109 posts

Topic: General Discussion / Would you like to help redevelop the DAFNE course?

This request has now been closed following the response from this post and a parallel e-mail sent to the members of the DAFNE Graduate Group.

Thank you to all of those who have responded to our request for additional patient input into the
DAFNE Plus Patient Advisory Groups. Weâ€™ve had a phenomenal response and as such, we are not
looking for any further input at this time.

We will be in touch with those who have shown an interest already to find out more about their
experience of DAFNE and provide more information about the project and potential involvement going
forward (unfortunately, due to resource limitations, we canâ€™t involve everyone).

Once again, thank you for your support.

Nov 10, 2016

JayBee 587 posts

Topic: DAFNE Graduate Group (DGG) / Formation of DAFNE Graduate Group (DGG)

Fair enough. That makes sense.

I would be interested in patient participation if location isn't a barrier and what not.

I look forward to the update about it. Needed some good news after all the upsetting news of late.

Nov 10, 2016

marke 681 posts

Topic: DAFNE Graduate Group (DGG) / Formation of DAFNE Graduate Group (DGG)

I would have to get permission to put notes on the site for DAFNEPlus I will find out and get back to you. There will be no new code as any DAFNEplus site will be separate from this site because its a trial they need to keep it separate from this site which has a large membership of DAFNE grads that have already done the course. To provide the new course is better than can't contaminate it with existing grads while the trial is ongoing.....

Nov 10, 2016

JayBee 587 posts

Topic: DAFNE Graduate Group (DGG) / Formation of DAFNE Graduate Group (DGG)

I am in contact with Peter regarding my hospital situation so I will probably speak to him directly first.

I look forward to learning more about DAFNE Plus. Will notes for it go up on this site? Will forum members need a new code to access them if yes?

Thanks for your replies Marke.

Nov 10, 2016

marke 681 posts

Topic: General Discussion / Campaigning Against Hospitals Dropping DAFNE

I have answered on another thread but a quick statement. The replacement course is called DAFNEPlus and they have only just been awarded the grant to run it. Simon and I are involved as Technical Patients because we run DAFNEOnline. I am happy to share information on it, the people heading it are not secretive and want patient involvement. Hopefully things will start developing with it over the next few months,

Nov 10, 2016

marke 681 posts

Topic: DAFNE Graduate Group (DGG) / Formation of DAFNE Graduate Group (DGG)

Hi, I can comment on this now that I have no involvement in DUAG, DGG or anything but DAFNEOnline ;-) Sadly no you can't go to the meeting unless invited. Peter may be able to help with that but I am not overly optimistic, even when I was presenting a session there I had trouble getting invited ! I should make clear this is nothing to do with the Medical Professionals who could not be more welcoming, supportive and helpful. Its the DAFNE administrators who don't quite grasp patient participation, one of the reasons I am no longer involved. I would approach Peter direct or I still know 'people' if that fails. Its held in Manchester , usually in June/July and is a very interesting day. The thing with the HCP's participation and insurance is still an issue but there are constant efforts going on to try to change this and some enlightened people. One day they will overcome the bureaucrats in the NHS and provide a 21st Century service that makes use of technology. There is a new trail of DAFNE called DAFNEPlus that will hopefully implement some of this in the next few years. The HCP's are aware of what's needed its being allowed to do it.

Nov 10, 2016

JayBee 587 posts

Topic: General Discussion / Campaigning Against Hospitals Dropping DAFNE

I've heard they have a replacement course planned but getting info about it has been like getting blood from a stone. It's like no one knows what's happening and some HCPs are now being extremely dismissive towards my concerns, and being very anti-DAFNE. The fact I'm DAFNE trained is actually something my hospital is using against me so they don't have to help me. They're dropping DAFNE and treating patients like that... How unprofessional. It's understandable why low uptake would be a thought but like Marke has said, it definitely looks more to be about finances. Patients are just numbers is all I'm getting from this.

Nov 10, 2016

marke 681 posts

Topic: General Discussion / Campaigning Against Hospitals Dropping DAFNE

sadly its not about attendance its about finance. The centres have to pay the DAFNE Programme fees for being allowed to run the course. Many centres have decided to invent their own courses that they don't have to pay for. In Kent its called KATIE ( Kent Adult Type 1 Education, I think ) and is similar to DAFNE. It has a waiting list of about 18 months. Quite a number of centres have gone solo over the last few years. A national programme would be better but in an organisation like the NHS bureaucracy trumps everything else, so Centres fall away without any real change in approach. But hey enough of my bitter twisted views Twisted Evil

Nov 10, 2016

marke 681 posts

Topic: General Discussion / Printing the Sick-day Rules

yes it has but.... they wouldn't let us have a copy to put on the site. After 2 years of complaining to everyone who would listen we finally got the 2014 copies of the 5 day course, 5x1 day course and pump course. All I have to do now is convert them into a format compatible with the site. It would be easier if they tracked changes between versions but they don't. I hope to have the 5 day course on the site by xmas and the others as soon as I can get them done.....

Nov 10, 2016

novorapidboi26 1,819 posts

Topic: General Discussion / Campaigning Against Hospitals Dropping DAFNE

I am shocked that your hospital is thinking about getting rid of it...

Is this because there has not been a good uptake of patients attending...?

Having the knowledge DAFNE provides will change lives....

Nov 10, 2016

novorapidboi26 1,819 posts

Topic: General Discussion / Printing the Sick-day Rules

Has the course handbook not been updated since 2008?


Nov 16, 2016 alturn 78 posts	Topic: Questions for HCPs / Statin effect on blood sugars Put on Atorvastatin on diagnosis as T1, can't say it has any noticeable effect. But when BP meds were changed I thought there was a bit of increase in BGs, but all settled down after a while. There could be other reasons - check injection sites as if lumpy can cause erratic BGs, are your BI/QA ratios etc correct? Other things can also affect BGs - stress, activity, mood, weather maybe. Hope this helps.

Nov 15, 2016 Alan 49 284 posts	Topic: Questions for HCPs / Statin effect on blood sugars I'm on Simvastatin - no noticeable effects on blood glucose.

Nov 15, 2016 chrisinbrum 41 posts	Topic: Questions for HCPs / Statin effect on blood sugars I've recently started on atorvastatin, and I know there is a side effect that it may raise blood glucose. I'm finding control difficult at the moment - it may be a coincidence or it may be linked to the statin use, I'm not sure. Is there a view among health professionals or other DAFNE graduates about how to manage any side effects of statins? Has anyone else noticed a similar effect?

Nov 14, 2016 JayBee 587 posts	Topic: General Discussion / Campaigning Against Hospitals Dropping DAFNE Just saw this today. My experiences with my care team right now make some more sense. http://www.bbc.co.uk/news/health-37943379 Absolutely disgusting.

Nov 12, 2016 JayBee 587 posts	Topic: General Discussion / Campaigning Against Hospitals Dropping DAFNE To confirm, the CCG of my area have described the new education course as "our new expanded Intermediate Diabetes service" which doesn't describe much, and my current lead DSN is telling me that the new course is apparently like BERTIE. Also, the Chief Executive of the CCG has told me that it is not under DAFNE: ~ after a diabetes service review, it was apparent that DAFNE had very low levels of uptake and that the delivery of care from single DSN running clinics in primary care was well received by patients and GPs. The CE went on to say that there were challenges due to capacity being restricted so patients' benefits were limited under the current system. ~ To address these issues, the CCG has started working with the James Paget Hospital Foundation Trust to develop a new model of care to accommodate the single DSN in primary care better to provide more benefit to patients. The idea being that they're closer to patients' homes. ~ These changes include incorporating a structured education programme that is not DAFNE, but it will incorporate themes and subject matter that is covered by DAFNE. Support will also be available to DAFNE graduates in order to "maintain improvements". He goes on to say that the new education programme will contain the same content with regard to dose adjustment and diet but will allow for some greater flexibility in the manner of delivery so more patients can benefit from the same learning outcomes I described in my initial correspondence to them which Peter helped me write. I personally am not thrilled about these changes at all considering my GP surgery have always directed me to my DSN team at the hospital because they have continuously admitted that they don't know how to help their patients with type 1 diabetes with their issues due to being too different to patients with type 2 diabetes. Based on correspondence I have had with my lead DSN and new hospital consultant, it's quite apparent that they're keen to wash their hands of me and be super dismissive, instead of being helpful with dealing with my raised concerns - including my GP surgery's track record and these planned changes from the CCG coming into play.

Nov 12, 2016 Peter 109 posts	Topic: General Discussion / Campaigning Against Hospitals Dropping DAFNE marke said: I have answered on another thread but a quick statement. The replacement course is called DAFNEPlus and they have only just been awarded the grant to run it. Simon and I are involved as Technical Patients because we run DAFNEOnline. I am happy to share information on it, the people heading it are not secretive and want patient involvement. Hopefully things will start developing with it over the next few months, Mark, I think JayBee is referring to a replacement course that James Paget are developing rather than to DAFNEplus. As with your case, they are saying that it will be based on DAFNE. You correctly say that it the financial cost of participating in DAFNE that is the main reason for it being dropped. There is also a degree of "not invented here" amongst the medical staff, particularly when staff change in a DAFNE centre. The sad fact is that, in addition to James Paget in Norfolk, which started this thread, there are three other services currently under threat: Royal Berkshire in Reading South West Essex NHS Lanarkshire This is known as each service has to give notice of their intention to terminate their DAFNE service to the Central DAFNE team. In cases where this happens, the DAFNE Graduate Group will then look to confirm this information through Freedom of Information requests to the CCGs and Trusts involved. This then enables a campaign to be started to try an change the decision, as the information is then in the public domain. JayBee and I have been doing this for James Paget over the last 6 months, but without success (so far). The DGG are now ready to start campaigning on the other centres listed above. If you're a patient at one of these and would be willing to help in a campaign against the decision, then please contact me through this thread, by a persoanl message in dafneonline or by e-mail at [email protected]. Many thanks.

Nov 11, 2016 DafnesHubby 1 post	Topic: DAFNE Graduate Group (DGG) / DAFNE Graduation Group Belfast 11/11/16 Ladies and gentlemen and me ðŸ‘¹ Thank you all for making this week good fun and enjoyable, I do hope we can stay in touch and support each other!! Hope to catch up soon, Greg.

Nov 11, 2016 novorapidboi26 1,819 posts	Topic: General Discussion / Campaigning Against Hospitals Dropping DAFNE marke said: sadly its not about attendance its about finance. The centres have to pay the DAFNE Programme fees for being allowed to run the course. Many centres have decided to invent their own courses that they don't have to pay for. In Kent its called KATIE ( Kent Adult Type 1 Education, I think ) and is similar to DAFNE. It has a waiting list of about 18 months. Quite a number of centres have gone solo over the last few years. A national programme would be better but in an organisation like the NHS bureaucracy trumps everything else, so Centres fall away without any real change in approach. But hey enough of my bitter twisted views I will always be loyal to DAFNE but I suppose as long as the education is getting out there and its as good or better than DAFNE its not the end of the world.... What's to stop DAFNE trained HCPs educating people themselves...? Is there any legal issues?

Nov 11, 2016 novorapidboi26 1,819 posts	Topic: General Discussion / Printing the Sick-day Rules There's no rush, take your time...

Nov 11, 2016 Peter 109 posts	Topic: General Discussion / Would you like to help redevelop the DAFNE course? This request has now been closed following the response from this post and a parallel e-mail sent to the members of the DAFNE Graduate Group. Thank you to all of those who have responded to our request for additional patient input into the DAFNE Plus Patient Advisory Groups. Weâ€™ve had a phenomenal response and as such, we are not looking for any further input at this time. We will be in touch with those who have shown an interest already to find out more about their experience of DAFNE and provide more information about the project and potential involvement going forward (unfortunately, due to resource limitations, we canâ€™t involve everyone). Once again, thank you for your support.

Nov 10, 2016 JayBee 587 posts	Topic: DAFNE Graduate Group (DGG) / Formation of DAFNE Graduate Group (DGG) Fair enough. That makes sense. I would be interested in patient participation if location isn't a barrier and what not. I look forward to the update about it. Needed some good news after all the upsetting news of late.

Nov 10, 2016 marke 681 posts	Topic: DAFNE Graduate Group (DGG) / Formation of DAFNE Graduate Group (DGG) I would have to get permission to put notes on the site for DAFNEPlus I will find out and get back to you. There will be no new code as any DAFNEplus site will be separate from this site because its a trial they need to keep it separate from this site which has a large membership of DAFNE grads that have already done the course. To provide the new course is better than can't contaminate it with existing grads while the trial is ongoing.....

Nov 10, 2016 JayBee 587 posts	Topic: DAFNE Graduate Group (DGG) / Formation of DAFNE Graduate Group (DGG) I am in contact with Peter regarding my hospital situation so I will probably speak to him directly first. I look forward to learning more about DAFNE Plus. Will notes for it go up on this site? Will forum members need a new code to access them if yes? Thanks for your replies Marke.

Nov 10, 2016 marke 681 posts	Topic: General Discussion / Campaigning Against Hospitals Dropping DAFNE I have answered on another thread but a quick statement. The replacement course is called DAFNEPlus and they have only just been awarded the grant to run it. Simon and I are involved as Technical Patients because we run DAFNEOnline. I am happy to share information on it, the people heading it are not secretive and want patient involvement. Hopefully things will start developing with it over the next few months,

Nov 10, 2016 marke 681 posts	Topic: DAFNE Graduate Group (DGG) / Formation of DAFNE Graduate Group (DGG) Hi, I can comment on this now that I have no involvement in DUAG, DGG or anything but DAFNEOnline ;-) Sadly no you can't go to the meeting unless invited. Peter may be able to help with that but I am not overly optimistic, even when I was presenting a session there I had trouble getting invited ! I should make clear this is nothing to do with the Medical Professionals who could not be more welcoming, supportive and helpful. Its the DAFNE administrators who don't quite grasp patient participation, one of the reasons I am no longer involved. I would approach Peter direct or I still know 'people' if that fails. Its held in Manchester , usually in June/July and is a very interesting day. The thing with the HCP's participation and insurance is still an issue but there are constant efforts going on to try to change this and some enlightened people. One day they will overcome the bureaucrats in the NHS and provide a 21st Century service that makes use of technology. There is a new trail of DAFNE called DAFNEPlus that will hopefully implement some of this in the next few years. The HCP's are aware of what's needed its being allowed to do it.

Nov 10, 2016 JayBee 587 posts	Topic: General Discussion / Campaigning Against Hospitals Dropping DAFNE I've heard they have a replacement course planned but getting info about it has been like getting blood from a stone. It's like no one knows what's happening and some HCPs are now being extremely dismissive towards my concerns, and being very anti-DAFNE. The fact I'm DAFNE trained is actually something my hospital is using against me so they don't have to help me. They're dropping DAFNE and treating patients like that... How unprofessional. It's understandable why low uptake would be a thought but like Marke has said, it definitely looks more to be about finances. Patients are just numbers is all I'm getting from this.

Nov 10, 2016 marke 681 posts	Topic: General Discussion / Campaigning Against Hospitals Dropping DAFNE sadly its not about attendance its about finance. The centres have to pay the DAFNE Programme fees for being allowed to run the course. Many centres have decided to invent their own courses that they don't have to pay for. In Kent its called KATIE ( Kent Adult Type 1 Education, I think ) and is similar to DAFNE. It has a waiting list of about 18 months. Quite a number of centres have gone solo over the last few years. A national programme would be better but in an organisation like the NHS bureaucracy trumps everything else, so Centres fall away without any real change in approach. But hey enough of my bitter twisted views

Nov 10, 2016 marke 681 posts	Topic: General Discussion / Printing the Sick-day Rules yes it has but.... they wouldn't let us have a copy to put on the site. After 2 years of complaining to everyone who would listen we finally got the 2014 copies of the 5 day course, 5x1 day course and pump course. All I have to do now is convert them into a format compatible with the site. It would be easier if they tracked changes between versions but they don't. I hope to have the 5 day course on the site by xmas and the others as soon as I can get them done.....

Nov 10, 2016 novorapidboi26 1,819 posts	Topic: General Discussion / Campaigning Against Hospitals Dropping DAFNE I am shocked that your hospital is thinking about getting rid of it... Is this because there has not been a good uptake of patients attending...? Having the knowledge DAFNE provides will change lives....

Nov 10, 2016 novorapidboi26 1,819 posts	Topic: General Discussion / Printing the Sick-day Rules Has the course handbook not been updated since 2008?