Recent Posts - DAFNE Online

May 6, 2009

Simon 578 posts

Topic: General Discussion / Do you have access to the Online Handbook?

Hello site members,

Take a look to the right of your screen. If you are logged in you should see an orange box containing, amongst other things, 'BG Diary'. If you are a DAFNE Graduate (and the site recognizes you as one) then you should also see a link to the 'DAFNE Course Handbook'. If you can see this and are a DAFNE Graduate then... Fantastic - your registration on the site is OK.

If you are a Graduate and cannot see the link to the DAFNE Course Handbook, then the site doesn't know that you are a DAFNE Graduate and therefore won't give you access to the handbook. This is because material in the handbook is potentially dangerous if used by someone who isn't DAFNE trained. To get access do the following:

Get in touch with your DAFNE Educators. They have been prompted to register on this site as HCPs (HealthCare Professionals) via an email straight from DAFNE Central. This gives them the ability to generate a code for their particular DAFNE Centre, which is then to be distributed to their Graduates. Please note this code is unique to DAFNE Online and is no way related to the centre codes from DAFNE Central.

Once you have got the code from your educators, click the 'Settings' link at the top of the site. There, about halfway down, you will see a DAFNE Centres section. First of all, select your DAFNE Centre from the drop-down box; these are sorted into regions then alphabetically for your convenience. Then, enter the code given to you by your Educator into the 'Centre Code' box. Finally, click 'Update Centre' and, all being well, you should now see a link to the DAFNE Course Handbook on the right hand side of the site.

You may receive the centre code in the format of an A4 invitation flyer, if this is the case then you don't need to follow the instructions to create a new account if you already have one - just use the code in the flyer in the instructions above. It will work.

If you have any questions or comments on this process, then post them here.

Thanks,

Simon

May 6, 2009

Simon 578 posts

Topic: Site Development / Online BG Diaries

Guys,

Point 2 - all done!

Regarding the inputting of mutiple diary entries - there is a balance required here as you have to remember that all of the data you input on the page is sent to our DAFNE Online web servers... The more entries, the more data; the more data the slower it will be to save your entries (and this may result in your web browser timing out and not saving them at all). I'd suggest 7 ( a days worth) as a starting point, and I'll work towards that, if there are no objections?

Simon

May 6, 2009

Carl 5 posts

Topic: Site Development / Online BG Diaries

Crispo,

Point 2. I was thinking exactly the same thing myself. +1 from me.

May 6, 2009

Simon T 3 posts

Topic: Site Development / Online BG Diaries

Hi Simon,

I'm glad you think this function is possible. With regards number of entries.. this is tricky. I personally would be happy with entering a day at a time (say 4-6 readings a day), but I guess it makes sense to correlate with the DAFNE diaries I assume everyone is all too familiar with. In this case would 7 days of 6 readings be feasible?

Anyone else?

Simon

May 6, 2009

Simon 578 posts

Topic: Site Development / Online BG Diaries

Hi Simon/Paul,

Some good comments there - I agree with them too. Regarding the entry of multiple entries I propose having a separate page for this - as having 28 rows will take up a lot of space. It will take a bit of time to do as the way the site is set up at the moment it geared towards accepting one set of data for an entry at a time. It can be done though. Point of discussion - what is a good number of entries to enter at a time - 28?

Re adding the day to the Date column - this can easily be done, expect it to appear soon...

Thanks,

Simon

May 6, 2009

Crispo 5 posts

Topic: Site Development / Online BG Diaries

Hi Simon / DAFNE Tech dudes and dudets,

I have a couple of contributions to make:

1. I agree with Simon's point above about multiple entry functionality. Trying to think how that would be best presented is tricky, but I agree I love keeping my diary online but just don't have the time to update every day. If a solution for this could be implemented then I would be one happy DAFNE grad!

...AND...

2. Would it be possible for the Diary section to be modified so that the Date column also details the relevant DAY, maybe above the current DD/MM Date i.e. Mon 04/05, Tue 05/05 etc. The justification being that when looking back over previous results it would be handy to be able to see at what phase of the week the levels were recorded without having to consult a calendar/diary.

Please let m eknow what you think and whether the date thing is possible. KEEP UP THE MINT WORK!

Thanks and regards,
Paul

May 6, 2009

Simon T 3 posts

Topic: Site Development / Online BG Diaries

Hi Simon,

The online diary is a nice idea and has great potential for viewing graphically what might otherwise be an illegible scrawl on a page. I started using the online version but soon got tired of having to enter each reading manually. I guess the rationale is that you make an entry as soon as you take a BG reading/CP, etc. It would be great to have a way of entering a whole week's entries at once, i.e. having all the boxes in front of you and just entering readings in each one - as you would an excel spreadsheet. This would prevent the need to make individual entries (some 28 in a good week) unless you wanted to. Not sure how easy this is to implement but your reactive responses so far have been impressive.

Cheers,
Simon

May 5, 2009

marke 681 posts

Topic: General Discussion / Does Dafne work?

Can I ask again from both Nicole and Dawn what they mean by a 'local' version of DAFNE ? The principles of DAFNE are NOT just a ratio of
carbohydrates to Insulin there is much more to it than that. This is why I'm slightly concerned by 'local' versions of DAFNE especially if you
both say it hasn't made much difference to your HBA1c. The 'official' DAFNE course lasts for 5 days and includes a lot of background information as well as training in getting both your background and quick acting insulins correct. Do local versions of DAFNE do this and did your course last this long ? I don't want to make this an ours is better than yours debate, but the point of the official DAFNE course is it is based on a
lot of research and study both in the UK and other countries. Its worrying if PCT's think they can 'adapt' it to their own local setups by
removing parts that might be important to the whole thing. This might not be the case, which is why I'm keen to know about the local versions.
I would also be concerned by statements like its highs and lows that cause more problems than raised HBA1c. As far as I am aware study has shown that complications are caused by HBA1c's being elavated in the long term, although I agree that a lot of highs and lows are potentially a problem. Part of DAFNE is aimed at helping you manage your BG's so that they don't go so high and are thus more even.

Please do let us know what your version of DAFNE entailed.

May 5, 2009

Dawn 2 posts

Topic: General Discussion / Does Dafne work?

I have also done a local version of DAFNE, and the principles were the same, using a ratio of carbohydrates to insulin. My own HBA1c hasn't improved very much, although my blood tests results seem generally better overall, so it was a bit of a surprise at my last clinic appointment that it was 8.4.
A specialist diabetes nurse who was involved with the training (now retired) believed that the ups and downs of highs and lows caused more problems than a raised HBA1. I do find that hormones play a huge part in upsetting blood sugars, especially before periods, and now during the menopause. I agree with the person (sorry, I'm new to the site!) who said that the medical staff usually appear to gloss over this issue, but after 50 years of diabetes, I feel it makes a significant difference to results.
Keep up the good work, everyone!

May 4, 2009

Stew B 125 posts

Topic: General Discussion / Does Dafne work?

My HBA1c was pretty good before I did my DAFNE course in Norwich in Feb 2007, and it has remained at just below 7 pretty constantly since then. For me the huge benefit of DAFNE has been to get my (and my family's) food life back. I was diagnosed in 1999, when I was 46, and the change for me was pretty radical. I became obsessed with achieving a low HBA1c, and ran my life around my diabetes. I felt that I had lost control, and the impact spread to work and especially to my family. Maybe another sort of structured education might have helped, but for me DAFNE was a revelation - it has given back control and flexibility, to both me and my family. Clearly, achieivng good blood glucose control is important for physical health, but for me the huge improvement in emotional well-being has probably been the biggest direct impact of DAFNE.

May 3, 2009

marke 681 posts

Topic: General Discussion / Does Dafne work?

Hi,
When you say a 'local version' of DAFNE, what exactly do you mean ? Was it the official DAFNE course or some adaptation of it by the local PCT/hospital. Its is true that HBA1c shows the level of blood sugars over the last three months and in theory you could have a lot of highs and lows thst average out, but I suspect in reality if your control is that un-even you wouldn't get a good HBA1c. I don't believe that there is any other test that gives an indication of blood sugar control.
The idea of DAFNE is you DONT have to be so careful about carbs because you match your insulin too the carbs you eat. The only variables are how much background insulin and how much fast acting insulin to take, although I agree the best way is to keep testing and adjusting to get it right.
I think that your group is like mine, they are being too harsh on themselves and not focusing enough on the positives. Some in my group were concerned that their HBA1c had not imporved by much, however after a group discussion it was clear that prior to DAFNE they had seldom tested their blood sugar. Post DAFNE they were still regularly blood testing and that was a big improvement on before. So there was no miracle improvement BUT they had made some progress and we helped them to focus on this as a way of continuing to improve their HBA1c and stay on track.
There is no easy solution to stay on track. I would say the help of others is the best way, which is one of the reasons for this website existing to help DAFNE graduates communicate and support each other. So keep working at it and focus on the positives and changes you have already made. Hopefully this will help you keep on track.

May 3, 2009

Nicole 3 posts

Topic: General Discussion / Does Dafne work?

I live in Epsom and have done a local version of DAFNE. I have found this very useful because it has brought me in touch with other type 1 diabetics from whom I gain lots of moral support and inspiration. We meet up monthly and that is all well and good but the general feedback from the group seems to be that their actual HBA1c results are not particularly improved. I wondered what long term improvements others have noticed and whether there are any other ways of measuring it than the HBA1c? (I have also heard that because its a mean average of your blood sugars its possible to be badly controlled, with extreme highs and lows, but get a good result).
I am pro DAFNE because its given me the tools i need to fit diabetes into a normal life but I am aware that if I am to bring down my blood sugars I've got to be pretty careful about carbs and insulin and all the other variables. In other words it only works if you keep trying, testing and building on your self knowledge.
How do you keep yourself focussed and on track? What support do you get from HCPs and other diabetics? BTW in the interests of openess my HBA1c is 8.4 so I could do better!

May 2, 2009

Becky 7 posts

Topic: General Discussion / DAFNE in peril at the Wirral

I have recieved the following response from somebody at Wirral PCT.

Dear Mrs Nicholls

Thank you for your email dated 20th April 2009 concerning the decision towithdraw funding for the DAFNE course.

I apologise for the delay in responding to you. Owing to a misunderstandingI was under then impression that the matter was alreday being dealt with.Please accept my apologies for the lack of communication from ourselves.

I can confirm that your concerns have been passed to the Assistant GeneralManager for Medicine and that I have asked for a full response to theissues that you have raised. I will contact you as soon as this has beenreceived.

In the meantime, thank you for bringing this matter to my attention. I wasvery sorry to learn that a course that you have found so helpful andconstructive is to end and I hope that the Trust will be able offer you assatisfactory alternative. Again, I shall contact you as soon as I have anyfurther news.

Yours sincerely

Jonathan Eke
Complaints Manager
Risk Management Department
Wirral University Teaching Hospital
NHS Foundation Trust
Tel: 0151 678 5111 Ext: 2615
Direct Line: 0151 604 7660
Fax: 0151 604 7041

May 1, 2009

digth 19 posts

Topic: General Discussion / DAFNE in peril at the Wirral

Hi Clare

Its a shame that after all your trouble to ensure that you continued to get a quality service from the Arrowe Park team you are now having to accept a situation where you no longer get support of DAFNE trained staff.

Perhaps a letter to the the Cheif Executive at Arrowe Park, letting him know that you are now considering moving your care elsewhere as DAFNE is no longer available would be help to highlight the situation further.

May 1, 2009

Claire Hough 12 posts

Topic: General Discussion / DAFNE in peril at the Wirral

I have actually moved slightly out of the area from Arrowe Park now, but caused a bit of a fuss with my new doctors and the hospital by refusing to change from the care of Arrowe because of DAFNE - which they don't do in Chester. I guess if they do withdraw DAFNE I may as well just change to being under the care of my doctor's surgery, which is how they care for Diabetics in my new area, and carry on following DAFNE on my own. Seems a shame to have to go it alone but at least I will have this forum and my good friend Becky to help me!

Apr 30, 2009

marke 681 posts

Topic: General Discussion / DAFNE in peril at the Wirral

You are right at least the PCT has been made aware of this issue. I'm told the trust wants to issue a statement to put on this website, we await it with anticipation. I am interested to know what 'whistle' is, sadly google can't help which I suspect tells me all I need to know.
I'm sure we all want to see Diabetes Structured education available, however without knowing the details of whistle its hard to say how it compares with DAFNE.
If anyone gets a letter of response from the Trust please let us know so we can co-ordinate a response.

Apr 30, 2009

marke 681 posts

Topic: Questions for HCPs / How to attend a DAFNE Clinic after moving house

hey, good news!! let us know how it goes. Hopefully you can continue to get DAFNE support from them and this site. I used to
live in that part of the country and still miss it....

Apr 30, 2009

natv25 2 posts

Topic: Questions for HCPs / How to attend a DAFNE Clinic after moving house

Many thanks for all your contributions.

I phoned the DAFNE clinic at SALisbury and have got an appointment in a few weeks time. On their advise I went back to the doctor and told them this and gave them the address so they could refer me aswell, they didin't have much choice once I told them I had already got an appointment booked.

Thanks again to you all.

Apr 30, 2009

digth 19 posts

Topic: Questions for HCPs / How to attend a DAFNE Clinic after moving house

Hi

Simon Heller is correct that DAFNE centres are very thin on the ground on the south coast.

As marke has pointed DAFNE is delivered at Salisbury District Hospital, Salisbury and also the Royal Surrey County Hospital, Guilford; next closest would be in London.

I'm not sure if Salisbury or Guilford are options for you , but good luck and I hope you get the some support.

Gill Thompson

Apr 30, 2009

digth 19 posts

Topic: General Discussion / DAFNE in peril at the Wirral

Hi Everyone

I need to correct the original information that I supplied that started this initial debate.

I have been informed that technically the PCT did not withdraw funding at Arrowe Park Hospital, as they have never funded DAFNE in the first place. Apparently the DAFNE Programme at Arrowe Park has always been funded by 'soft money' from a Drs endowment fund, this funding came to an end and the Wirral University Teaching Hospital Foundation Trust (covering Arrowe Park Hospital and Clatterbridge General Hospital) decided to put a bid together for the PCT for structured Type 1 education for the Trust.

Wirral University Teaching Hospital Foundation Trust decided not to favour DAFNE, but to go with an alternative programme delivered at Clatterbridge Hospital called Whistle, which is based upon another type 1 education programme. It was this alternative programme that Wirral University Teaching Hospital Foundation Trust has recommended for funding rather that DAFNE.

However the actual outcome remains the same, people living on the Wirral no longer have access to DAFNE.

Therefore any letters of complaint need to be redirected to the Chief Executive of Wirral University Teaching Hospital Foundation Trust, Len Richards, at the following address:

Arrowe Park Hospital
Arrowe Park Road
Upton
Wirral
CH49 5PE

I understand that the PCT have forwarded all letters of complaint received from DAFNE Graduates to date to Wirral University Teaching Hospital Foundation Trust complaints department.

So Iâ€™m sorry for providing you all with slightly incorrect initial information in the first place; however I suspect the fact that the PCT have been altered to your concerns isn't a bad thing. Letâ€™s see how the Wirral University Teaching Hospital Foundation Trust responds.

Apr 29, 2009

Emma Dietitian 1 post

Topic: Carbohydrate Counting / Mulled wine

I have checked this recently (despite the unseasonal timing) and it is 2 1/2 CPs per 100 ml, so you're spot on with your guess. Traditionally, demerera sugar is added, so this makes sense.
I would still use DAFNE principles of 1/2 unit QA per CP and a snack afterwards of you do enjoy more than a glass or 2 though!

Apr 28, 2009

Carl 5 posts

Topic: DAFNE Online Mobile / Mobile site released

Wow, this works really well. I've just made my first "mobile" diary entry on my Nokia E51. This is going to be so convenient when out and about.

The mobile home page, diary and carb counter look good on the E51 using IE and Opera Mini.

Smile

Thanks for all your hard work!

Apr 28, 2009

Becky 7 posts

Topic: General Discussion / DAFNE in peril at the Wirral

I have sent an e-mail to both e-mail addresses & I also copied in my local MP. He said that once I hear back from the complaints team he'll see how he can help.

Apr 28, 2009

Simon 578 posts

Topic: General Discussion / DAFNE in peril at the Wirral

Although I did the course in Sheffield I now live under the care of Arrowe Park so have sent them a letter of complaint - here's hoping they realise that the DAFNE Course is an important tool in the care of people with Type 1 like ourselves. If I hear anything back I'll let you know...

Apr 28, 2009

Becky 7 posts

Topic: General Discussion / DAFNE in peril at the Wirral

Woo Claire - you go girl! xXx

May 6, 2009 Simon 578 posts	Topic: General Discussion / Do you have access to the Online Handbook? Hello site members, Take a look to the right of your screen. If you are logged in you should see an orange box containing, amongst other things, 'BG Diary'. If you are a DAFNE Graduate (and the site recognizes you as one) then you should also see a link to the 'DAFNE Course Handbook'. If you can see this and are a DAFNE Graduate then... Fantastic - your registration on the site is OK. If you are a Graduate and cannot see the link to the DAFNE Course Handbook, then the site doesn't know that you are a DAFNE Graduate and therefore won't give you access to the handbook. This is because material in the handbook is potentially dangerous if used by someone who isn't DAFNE trained. To get access do the following: Get in touch with your DAFNE Educators. They have been prompted to register on this site as HCPs (HealthCare Professionals) via an email straight from DAFNE Central. This gives them the ability to generate a code for their particular DAFNE Centre, which is then to be distributed to their Graduates. Please note this code is unique to DAFNE Online and is no way related to the centre codes from DAFNE Central. Once you have got the code from your educators, click the 'Settings' link at the top of the site. There, about halfway down, you will see a DAFNE Centres section. First of all, select your DAFNE Centre from the drop-down box; these are sorted into regions then alphabetically for your convenience. Then, enter the code given to you by your Educator into the 'Centre Code' box. Finally, click 'Update Centre' and, all being well, you should now see a link to the DAFNE Course Handbook on the right hand side of the site. You may receive the centre code in the format of an A4 invitation flyer, if this is the case then you don't need to follow the instructions to create a new account if you already have one - just use the code in the flyer in the instructions above. It will work. If you have any questions or comments on this process, then post them here. Thanks, Simon

May 6, 2009 Simon 578 posts	Topic: Site Development / Online BG Diaries Guys, Point 2 - all done! Regarding the inputting of mutiple diary entries - there is a balance required here as you have to remember that all of the data you input on the page is sent to our DAFNE Online web servers... The more entries, the more data; the more data the slower it will be to save your entries (and this may result in your web browser timing out and not saving them at all). I'd suggest 7 ( a days worth) as a starting point, and I'll work towards that, if there are no objections? Simon

May 6, 2009 Carl 5 posts	Topic: Site Development / Online BG Diaries Crispo, Point 2. I was thinking exactly the same thing myself. +1 from me.

May 6, 2009 Simon T 3 posts	Topic: Site Development / Online BG Diaries Hi Simon, I'm glad you think this function is possible. With regards number of entries.. this is tricky. I personally would be happy with entering a day at a time (say 4-6 readings a day), but I guess it makes sense to correlate with the DAFNE diaries I assume everyone is all too familiar with. In this case would 7 days of 6 readings be feasible? Anyone else? Simon

May 6, 2009 Simon 578 posts	Topic: Site Development / Online BG Diaries Hi Simon/Paul, Some good comments there - I agree with them too. Regarding the entry of multiple entries I propose having a separate page for this - as having 28 rows will take up a lot of space. It will take a bit of time to do as the way the site is set up at the moment it geared towards accepting one set of data for an entry at a time. It can be done though. Point of discussion - what is a good number of entries to enter at a time - 28? Re adding the day to the Date column - this can easily be done, expect it to appear soon... Thanks, Simon

May 6, 2009 Crispo 5 posts	Topic: Site Development / Online BG Diaries Hi Simon / DAFNE Tech dudes and dudets, I have a couple of contributions to make: 1. I agree with Simon's point above about multiple entry functionality. Trying to think how that would be best presented is tricky, but I agree I love keeping my diary online but just don't have the time to update every day. If a solution for this could be implemented then I would be one happy DAFNE grad! ...AND... 2. Would it be possible for the Diary section to be modified so that the Date column also details the relevant DAY, maybe above the current DD/MM Date i.e. Mon 04/05, Tue 05/05 etc. The justification being that when looking back over previous results it would be handy to be able to see at what phase of the week the levels were recorded without having to consult a calendar/diary. Please let m eknow what you think and whether the date thing is possible. KEEP UP THE MINT WORK! Thanks and regards, Paul

May 6, 2009 Simon T 3 posts	Topic: Site Development / Online BG Diaries Hi Simon, The online diary is a nice idea and has great potential for viewing graphically what might otherwise be an illegible scrawl on a page. I started using the online version but soon got tired of having to enter each reading manually. I guess the rationale is that you make an entry as soon as you take a BG reading/CP, etc. It would be great to have a way of entering a whole week's entries at once, i.e. having all the boxes in front of you and just entering readings in each one - as you would an excel spreadsheet. This would prevent the need to make individual entries (some 28 in a good week) unless you wanted to. Not sure how easy this is to implement but your reactive responses so far have been impressive. Cheers, Simon

May 5, 2009 marke 681 posts	Topic: General Discussion / Does Dafne work? Can I ask again from both Nicole and Dawn what they mean by a 'local' version of DAFNE ? The principles of DAFNE are NOT just a ratio of carbohydrates to Insulin there is much more to it than that. This is why I'm slightly concerned by 'local' versions of DAFNE especially if you both say it hasn't made much difference to your HBA1c. The 'official' DAFNE course lasts for 5 days and includes a lot of background information as well as training in getting both your background and quick acting insulins correct. Do local versions of DAFNE do this and did your course last this long ? I don't want to make this an ours is better than yours debate, but the point of the official DAFNE course is it is based on a lot of research and study both in the UK and other countries. Its worrying if PCT's think they can 'adapt' it to their own local setups by removing parts that might be important to the whole thing. This might not be the case, which is why I'm keen to know about the local versions. I would also be concerned by statements like its highs and lows that cause more problems than raised HBA1c. As far as I am aware study has shown that complications are caused by HBA1c's being elavated in the long term, although I agree that a lot of highs and lows are potentially a problem. Part of DAFNE is aimed at helping you manage your BG's so that they don't go so high and are thus more even. Please do let us know what your version of DAFNE entailed.

May 5, 2009 Dawn 2 posts	Topic: General Discussion / Does Dafne work? I have also done a local version of DAFNE, and the principles were the same, using a ratio of carbohydrates to insulin. My own HBA1c hasn't improved very much, although my blood tests results seem generally better overall, so it was a bit of a surprise at my last clinic appointment that it was 8.4. A specialist diabetes nurse who was involved with the training (now retired) believed that the ups and downs of highs and lows caused more problems than a raised HBA1. I do find that hormones play a huge part in upsetting blood sugars, especially before periods, and now during the menopause. I agree with the person (sorry, I'm new to the site!) who said that the medical staff usually appear to gloss over this issue, but after 50 years of diabetes, I feel it makes a significant difference to results. Keep up the good work, everyone!

May 4, 2009 Stew B 125 posts	Topic: General Discussion / Does Dafne work? My HBA1c was pretty good before I did my DAFNE course in Norwich in Feb 2007, and it has remained at just below 7 pretty constantly since then. For me the huge benefit of DAFNE has been to get my (and my family's) food life back. I was diagnosed in 1999, when I was 46, and the change for me was pretty radical. I became obsessed with achieving a low HBA1c, and ran my life around my diabetes. I felt that I had lost control, and the impact spread to work and especially to my family. Maybe another sort of structured education might have helped, but for me DAFNE was a revelation - it has given back control and flexibility, to both me and my family. Clearly, achieivng good blood glucose control is important for physical health, but for me the huge improvement in emotional well-being has probably been the biggest direct impact of DAFNE.

May 3, 2009 marke 681 posts	Topic: General Discussion / Does Dafne work? Hi, When you say a 'local version' of DAFNE, what exactly do you mean ? Was it the official DAFNE course or some adaptation of it by the local PCT/hospital. Its is true that HBA1c shows the level of blood sugars over the last three months and in theory you could have a lot of highs and lows thst average out, but I suspect in reality if your control is that un-even you wouldn't get a good HBA1c. I don't believe that there is any other test that gives an indication of blood sugar control. The idea of DAFNE is you DONT have to be so careful about carbs because you match your insulin too the carbs you eat. The only variables are how much background insulin and how much fast acting insulin to take, although I agree the best way is to keep testing and adjusting to get it right. I think that your group is like mine, they are being too harsh on themselves and not focusing enough on the positives. Some in my group were concerned that their HBA1c had not imporved by much, however after a group discussion it was clear that prior to DAFNE they had seldom tested their blood sugar. Post DAFNE they were still regularly blood testing and that was a big improvement on before. So there was no miracle improvement BUT they had made some progress and we helped them to focus on this as a way of continuing to improve their HBA1c and stay on track. There is no easy solution to stay on track. I would say the help of others is the best way, which is one of the reasons for this website existing to help DAFNE graduates communicate and support each other. So keep working at it and focus on the positives and changes you have already made. Hopefully this will help you keep on track.

May 3, 2009 Nicole 3 posts	Topic: General Discussion / Does Dafne work? I live in Epsom and have done a local version of DAFNE. I have found this very useful because it has brought me in touch with other type 1 diabetics from whom I gain lots of moral support and inspiration. We meet up monthly and that is all well and good but the general feedback from the group seems to be that their actual HBA1c results are not particularly improved. I wondered what long term improvements others have noticed and whether there are any other ways of measuring it than the HBA1c? (I have also heard that because its a mean average of your blood sugars its possible to be badly controlled, with extreme highs and lows, but get a good result). I am pro DAFNE because its given me the tools i need to fit diabetes into a normal life but I am aware that if I am to bring down my blood sugars I've got to be pretty careful about carbs and insulin and all the other variables. In other words it only works if you keep trying, testing and building on your self knowledge. How do you keep yourself focussed and on track? What support do you get from HCPs and other diabetics? BTW in the interests of openess my HBA1c is 8.4 so I could do better!

May 2, 2009 Becky 7 posts	Topic: General Discussion / DAFNE in peril at the Wirral I have recieved the following response from somebody at Wirral PCT. Dear Mrs Nicholls Thank you for your email dated 20th April 2009 concerning the decision towithdraw funding for the DAFNE course. I apologise for the delay in responding to you. Owing to a misunderstandingI was under then impression that the matter was alreday being dealt with.Please accept my apologies for the lack of communication from ourselves. I can confirm that your concerns have been passed to the Assistant GeneralManager for Medicine and that I have asked for a full response to theissues that you have raised. I will contact you as soon as this has beenreceived. In the meantime, thank you for bringing this matter to my attention. I wasvery sorry to learn that a course that you have found so helpful andconstructive is to end and I hope that the Trust will be able offer you assatisfactory alternative. Again, I shall contact you as soon as I have anyfurther news. Yours sincerely Jonathan Eke Complaints Manager Risk Management Department Wirral University Teaching Hospital NHS Foundation Trust Tel: 0151 678 5111 Ext: 2615 Direct Line: 0151 604 7660 Fax: 0151 604 7041

May 1, 2009 digth 19 posts	Topic: General Discussion / DAFNE in peril at the Wirral Hi Clare Its a shame that after all your trouble to ensure that you continued to get a quality service from the Arrowe Park team you are now having to accept a situation where you no longer get support of DAFNE trained staff. Perhaps a letter to the the Cheif Executive at Arrowe Park, letting him know that you are now considering moving your care elsewhere as DAFNE is no longer available would be help to highlight the situation further.

May 1, 2009 Claire Hough 12 posts	Topic: General Discussion / DAFNE in peril at the Wirral I have actually moved slightly out of the area from Arrowe Park now, but caused a bit of a fuss with my new doctors and the hospital by refusing to change from the care of Arrowe because of DAFNE - which they don't do in Chester. I guess if they do withdraw DAFNE I may as well just change to being under the care of my doctor's surgery, which is how they care for Diabetics in my new area, and carry on following DAFNE on my own. Seems a shame to have to go it alone but at least I will have this forum and my good friend Becky to help me!

Apr 30, 2009 marke 681 posts	Topic: General Discussion / DAFNE in peril at the Wirral You are right at least the PCT has been made aware of this issue. I'm told the trust wants to issue a statement to put on this website, we await it with anticipation. I am interested to know what 'whistle' is, sadly google can't help which I suspect tells me all I need to know. I'm sure we all want to see Diabetes Structured education available, however without knowing the details of whistle its hard to say how it compares with DAFNE. If anyone gets a letter of response from the Trust please let us know so we can co-ordinate a response.

Apr 30, 2009 marke 681 posts	Topic: Questions for HCPs / How to attend a DAFNE Clinic after moving house hey, good news!! let us know how it goes. Hopefully you can continue to get DAFNE support from them and this site. I used to live in that part of the country and still miss it....

Apr 30, 2009 natv25 2 posts	Topic: Questions for HCPs / How to attend a DAFNE Clinic after moving house Many thanks for all your contributions. I phoned the DAFNE clinic at SALisbury and have got an appointment in a few weeks time. On their advise I went back to the doctor and told them this and gave them the address so they could refer me aswell, they didin't have much choice once I told them I had already got an appointment booked. Thanks again to you all.

Apr 30, 2009 digth 19 posts	Topic: Questions for HCPs / How to attend a DAFNE Clinic after moving house Hi Simon Heller is correct that DAFNE centres are very thin on the ground on the south coast. As marke has pointed DAFNE is delivered at Salisbury District Hospital, Salisbury and also the Royal Surrey County Hospital, Guilford; next closest would be in London. I'm not sure if Salisbury or Guilford are options for you , but good luck and I hope you get the some support. Gill Thompson

Apr 30, 2009 digth 19 posts	Topic: General Discussion / DAFNE in peril at the Wirral Hi Everyone I need to correct the original information that I supplied that started this initial debate. I have been informed that technically the PCT did not withdraw funding at Arrowe Park Hospital, as they have never funded DAFNE in the first place. Apparently the DAFNE Programme at Arrowe Park has always been funded by 'soft money' from a Drs endowment fund, this funding came to an end and the Wirral University Teaching Hospital Foundation Trust (covering Arrowe Park Hospital and Clatterbridge General Hospital) decided to put a bid together for the PCT for structured Type 1 education for the Trust. Wirral University Teaching Hospital Foundation Trust decided not to favour DAFNE, but to go with an alternative programme delivered at Clatterbridge Hospital called Whistle, which is based upon another type 1 education programme. It was this alternative programme that Wirral University Teaching Hospital Foundation Trust has recommended for funding rather that DAFNE. However the actual outcome remains the same, people living on the Wirral no longer have access to DAFNE. Therefore any letters of complaint need to be redirected to the Chief Executive of Wirral University Teaching Hospital Foundation Trust, Len Richards, at the following address: Arrowe Park Hospital Arrowe Park Road Upton Wirral CH49 5PE I understand that the PCT have forwarded all letters of complaint received from DAFNE Graduates to date to Wirral University Teaching Hospital Foundation Trust complaints department. So Iâ€™m sorry for providing you all with slightly incorrect initial information in the first place; however I suspect the fact that the PCT have been altered to your concerns isn't a bad thing. Letâ€™s see how the Wirral University Teaching Hospital Foundation Trust responds.

Apr 29, 2009 Emma Dietitian 1 post	Topic: Carbohydrate Counting / Mulled wine I have checked this recently (despite the unseasonal timing) and it is 2 1/2 CPs per 100 ml, so you're spot on with your guess. Traditionally, demerera sugar is added, so this makes sense. I would still use DAFNE principles of 1/2 unit QA per CP and a snack afterwards of you do enjoy more than a glass or 2 though!

Apr 28, 2009 Carl 5 posts	Topic: DAFNE Online Mobile / Mobile site released Wow, this works really well. I've just made my first "mobile" diary entry on my Nokia E51. This is going to be so convenient when out and about. The mobile home page, diary and carb counter look good on the E51 using IE and Opera Mini. Thanks for all your hard work!

Apr 28, 2009 Becky 7 posts	Topic: General Discussion / DAFNE in peril at the Wirral I have sent an e-mail to both e-mail addresses & I also copied in my local MP. He said that once I hear back from the complaints team he'll see how he can help.

Apr 28, 2009 Simon 578 posts	Topic: General Discussion / DAFNE in peril at the Wirral Although I did the course in Sheffield I now live under the care of Arrowe Park so have sent them a letter of complaint - here's hoping they realise that the DAFNE Course is an important tool in the care of people with Type 1 like ourselves. If I hear anything back I'll let you know...

Apr 28, 2009 Becky 7 posts	Topic: General Discussion / DAFNE in peril at the Wirral Woo Claire - you go girl! xXx