Recent Posts - DAFNE Online

Nov 7, 2016

Alan 49 284 posts

Topic: General Discussion / Printing the Sick-day Rules

Apologies Mark - I didn't want to cause problems.

Nov 7, 2016

JayBee 587 posts

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

Sadly I don't live anywhere close to either of those specified locations. :/ Apparently there are people who struggled at my hospital but I know you already know that.

Best wishes to the project.

Nov 6, 2016

sjohno 37 posts

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

As much as I would love to help out I just don't meet the guidelines requested as DAFNE changed my life lol. I live in between Ashbourne and Derby and would have loved to help out. Smile

May I respectfully suggest that maybe you post this on the Type 1 Diabetes forum as there are several people on there who have a very negative view on DAFNE.

thanks and regards

Sarah

Nov 6, 2016

marke 681 posts

Topic: General Discussion / Printing the Sick-day Rules

Hi,
It is impossible to stop people doing screen grabs, I 'think' the NHS legal people understand this, we were told to protect the document as much as possible and that is what we have done. There will always ways around anything....

Nov 6, 2016

Peter 109 posts

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

I've been asked to post the following from the DAFNEplus Research team:

A research team, led by Professor Simon Heller (Professor of Clinical Diabetes at the University of Sheffield), are currently working on a research project called DAFNEplus, with the aim of improving the current DAFNE course to help graduates better manage their condition over the longer term.

We are looking to introduce behaviour change techniques and a model of follow up support, combined with new technology, into the DAFNE programme. We will be testing this out at some diabetes centres next year, ahead of a full trial later in the study. Patients have been working with the team to help redevelop DAFNE and will continue to provide input throughout the course of the research, but weâ€™re looking to get more patients involved in our Patient Advisory Groups (based in Sheffield and London) and hoped you may be able to help!

If you are:
a DAFNE graduate who has struggled with the course (either during and / or in maintaining the skills afterwards) and have a HbA1c over 8.5% / 69 mmol/mol; or
a type 1 diabetes patient who has not yet been on DAFNE
then we are interested in hearing from you!

You will also need to live in the UK and preferably in or near either Sheffield or London â€“ we will have fairly regular face-to-face meetings of the groups over the next 5 years, although you donâ€™t have to attend them all and we can be flexible to your needs. You will be paid for your involvement with the Advisory Group.

If you are interested in being involved or have any questions then please contact Dan Beever, Patient and Public Involvement Research Assistant on the DAFNEplus study ([email protected] / 0114 2220820) as soon as possible. You can also find out more about the progress of the study so far on the DAFNEplus blog - https://dafneplusresearch.wordpress.com/.

Nov 5, 2016

JayBee 587 posts

Topic: General Discussion / Campaigning Against Hospitals Dropping DAFNE

Is anyone else on here campaigning to stop their hospital from dropping DAFNE after a CCG decision based on funding, and changing it for their own-made GP based structured education course?

I have been for the last 8 months, contacting both my hospital and the CCG, and the responses from some of the HCPs have been outrageous.

My own hospital describe their new alternative course as being like BERTIE which does not meet NICE guidelines. BERTIE has no outcome profile as it is not audited and so neither the course delivered, nor the results obtained, are predictable, therefore not NICE guidelines recommended ( as per point 1.3.4: The outcomes are audited regularly. [new 2015] ). The DAFNE audit, which is the main reason for DAFNE's extra cost, does give the benefit of providing a known, cost saving outcome.

If there was any one else in a similar situation, are you having any better luck getting your hospital or CCG to understand the huge mistake they're making?

Thanks in advance.

Nov 5, 2016

JayBee 587 posts

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

Apologies, I may have only just seen this...

Is it possible for a member to attend any of the annual meetings that have minutes posted on dafne.uk.com? I didn't think to ask before now because I trusted my hospital to not let me down, but now they have, I am interested even more in supporting.

I wonder what could be done to change the insurance arrangements so that it is okay for HCPs to participate... I suppose a network of DAFNE trained DSN doing weekly or monthly video conference things would be too difficult to put in place...

Nov 4, 2016

Warwick 423 posts

Topic: General Discussion / ICE

Wow. I had them sent to me in New Zealand and Australia and no taxes or custom charges at all. I don't believe that we have any charges/tax to pay in either country unless the item is worth more than $400 (NZ) or $1000 (Australia) which the Road ID certainly isn't. I forgot about those charges from when I used to live in the UK. Perhaps RoadID should look at setting up a local UK operation.

Nov 4, 2016

SimonC 78 posts

Topic: General Discussion / ICE

Warwick said:
+1 for the Road ID. I have had once since a few weeks after my diagnosis in 2010 and it is always on me. The straps last ages, usually a couple of years at least.

Hi Warwick - I agree the RoadID is quite a good bit of kit - and at a reasonable price - although I didn't like getting stung by a)customs and then b) Royal mail for extra payments. I don't mind too much the Customs charge, but I did object to Royal Mail charging me Â£8 just to tell me Customs had slapped Â£5.25 tax and by the way - you have to collect it.

To be fair I asked RoadID to see if they could add the customs charges into their overseas costs - in the same way Amazon US do if you buy from the US Amazon site, and they not only gave me a small refund, but also did acknowledged it was something they needed to look at.

Thanks for the post.

Nov 4, 2016

SimonC 78 posts

Topic: General Discussion / ICE

HelenP said:
Hi Simon,

My son is an ambo and he tells me they always check the (mobile) phone (any mobile phone) as lots of information available especially with numbers listed as: HOME, WORK, GP as well as ICE.
Helen

Hi Helen - Thanks for the post - thats why I mentioned the ICE Apps - as its hard to check the info on a phone if it is locked and the person is unable to unlock it - IOS does have an inbuilt Medical page accessible from the lock screen - but I suspect that most people don't know it is there and so don't fill it in to make it available, and most wouldn't know how to get to it from the lock screen.

The Road ID App is quite good - but there are many others, and in IOS, having seen how the Road ID does it, you can do the same thing from Notes - just open up a new Note page, press return a few times to get the start of the info below the lock screen clock, type what you want others to see - and then take a screen shot of the note page (home and power together), and set that photo to be your lock screen page - and Bob is your Aunty - the data you want available is viewable on the lock screen.

This works, but isn't very neat, the proper Apps look a lot better as they are formatted nicely.

Your son - and others, can treat people so much better if they have this sort of info - which is why 'ambo' staff - and other blue light services look for medical alert bracelets - and more recently phone screens. Ambulance staff do a great job - and we can help them do an even better one by giving them information they can use.

Nov 4, 2016

Helen28 2 posts

Topic: Questions for HCPs / Holidays over 30 days

Helen28 said:
How do I keep my insulin between 2 and 8C without a fridge?

Thanks for that and I have a couple of frio wallets but hadn't tested them over that length of time. Have a fantastic opportunity to go to Canada and just nervous about the time length even though I've been diagnosed for 20 years!

Nov 4, 2016

Warwick 423 posts

Topic: Questions for HCPs / Holidays over 30 days

I use one of these over summer in Australia. It keeps the insulin cool enough to last more than a month without a fridge. http://friouk.com/the-frio-wallet/

Nov 3, 2016

Helen28 2 posts

Topic: Questions for HCPs / Holidays over 30 days

How do I keep my insulin between 2 and 8C without a fridge?

Nov 3, 2016

Warwick 423 posts

Topic: General Discussion / Printing the Sick-day Rules

Sshh Alan! Don't tell everyone :-)

Nov 3, 2016

Warwick 423 posts

Topic: General Discussion / ICE

+1 for the Road ID. I have had once since a few weeks after my diagnosis in 2010 and it is always on me. The straps last ages, usually a couple of years at least.

Oct 31, 2016

HelenP 218 posts

Topic: General Discussion / ICE

Hi Simon,

My son is an ambo and he tells me they always check the (mobile) phone (any mobile phone) as lots of information available especially with numbers listed as: HOME, WORK, GP as well as ICE.
Helen

Oct 31, 2016

SimonC 78 posts

Topic: General Discussion / ICE

I was reading on here that someone had had a Tattoo done - to tell/inform first responders of their condition - and I thought that was a good idea, and I wished I was brave enough to do it, and then on another thread, someone else was using the RoadId wrist bracelet.

Over the years I have had a few of these things - but looking at the Road Id site, I thought they were very good - and so ordered a bracelet with:

my 'name',
'wifes details',
'GP surgery',
'Diabetic Type 1',
'No 'Morphine' and
'metal plates in my leg'

etched onto a tag. All good info to give, and then I saw they did an App - IoS and Android.

The App is free - which is great, and it provides ICE info on the lock screen - again useful.

So I wondered - what other good ICE things there were out there - I'm sure there are lots, and as T1 we ought to be able to inform first responders, and so collectively we should be pulling all these things together to allow other forum members to take their pick.

There must be quite a few products out there for people to choose from.

Oct 27, 2016

Alan 49 284 posts

Topic: General Discussion / Printing the Sick-day Rules

Thanks for that Mark - I'm relieved to find it wasn't anything I was doing wrong. It seems a bit pointless to me, because I've got round it by Copying the document and then Pasting it on to a Word document, which I can then print.

Oct 27, 2016

marke 681 posts

Topic: General Discussion / Printing the Sick-day Rules

Nothing, I'm afraid we were forced to disable printing of the course handbook by the DAFNE programme team. It was made part of us being allowed to have the handbooks on the site. If you don't agree with this you need to contact [email protected] and ask them for an explanation. Its a bit of a political situation that hopefully will be learned from in the new DAFNEplus coming in the next year or so. They want to make that much more online.

Oct 24, 2016

Alan 49 284 posts

Topic: General Discussion / Printing the Sick-day Rules

I've tried printing the Sick-day rules, but only get blank pages. My printer is connected and is printing normally - what am I doing wrong?

Oct 22, 2016

Peter 109 posts

Topic: General Discussion / Evaluating the Health and Self-Management In Diabetes questionnaire

Alan Constable said:
Peter, I followed your link to the ScHARR website and it wanted a User name and a Password, but it offered no way of setting these up, so I was unable to take part in the survey.

Sorry about that. Seems the website changes the url on entry. Try this instead https://healthsurvey.shef.ac.uk/hasmid

Nov 7, 2016 Alan 49 284 posts	Topic: General Discussion / Printing the Sick-day Rules Apologies Mark - I didn't want to cause problems.

Nov 7, 2016 JayBee 587 posts	Topic: General Discussion / Would you like to help redevelop the DAFNE course? Sadly I don't live anywhere close to either of those specified locations. :/ Apparently there are people who struggled at my hospital but I know you already know that. Best wishes to the project.

Nov 6, 2016 sjohno 37 posts	Topic: General Discussion / Would you like to help redevelop the DAFNE course? As much as I would love to help out I just don't meet the guidelines requested as DAFNE changed my life lol. I live in between Ashbourne and Derby and would have loved to help out. May I respectfully suggest that maybe you post this on the Type 1 Diabetes forum as there are several people on there who have a very negative view on DAFNE. thanks and regards Sarah

Nov 6, 2016 marke 681 posts	Topic: General Discussion / Printing the Sick-day Rules Hi, It is impossible to stop people doing screen grabs, I 'think' the NHS legal people understand this, we were told to protect the document as much as possible and that is what we have done. There will always ways around anything....

Nov 6, 2016 Peter 109 posts	Topic: General Discussion / Would you like to help redevelop the DAFNE course? I've been asked to post the following from the DAFNEplus Research team: A research team, led by Professor Simon Heller (Professor of Clinical Diabetes at the University of Sheffield), are currently working on a research project called DAFNEplus, with the aim of improving the current DAFNE course to help graduates better manage their condition over the longer term. We are looking to introduce behaviour change techniques and a model of follow up support, combined with new technology, into the DAFNE programme. We will be testing this out at some diabetes centres next year, ahead of a full trial later in the study. Patients have been working with the team to help redevelop DAFNE and will continue to provide input throughout the course of the research, but weâ€™re looking to get more patients involved in our Patient Advisory Groups (based in Sheffield and London) and hoped you may be able to help! If you are: a DAFNE graduate who has struggled with the course (either during and / or in maintaining the skills afterwards) and have a HbA1c over 8.5% / 69 mmol/mol; or a type 1 diabetes patient who has not yet been on DAFNE then we are interested in hearing from you! You will also need to live in the UK and preferably in or near either Sheffield or London â€“ we will have fairly regular face-to-face meetings of the groups over the next 5 years, although you donâ€™t have to attend them all and we can be flexible to your needs. You will be paid for your involvement with the Advisory Group. If you are interested in being involved or have any questions then please contact Dan Beever, Patient and Public Involvement Research Assistant on the DAFNEplus study ([email protected] / 0114 2220820) as soon as possible. You can also find out more about the progress of the study so far on the DAFNEplus blog - https://dafneplusresearch.wordpress.com/.

Nov 5, 2016 JayBee 587 posts	Topic: General Discussion / Campaigning Against Hospitals Dropping DAFNE Is anyone else on here campaigning to stop their hospital from dropping DAFNE after a CCG decision based on funding, and changing it for their own-made GP based structured education course? I have been for the last 8 months, contacting both my hospital and the CCG, and the responses from some of the HCPs have been outrageous. My own hospital describe their new alternative course as being like BERTIE which does not meet NICE guidelines. BERTIE has no outcome profile as it is not audited and so neither the course delivered, nor the results obtained, are predictable, therefore not NICE guidelines recommended ( as per point 1.3.4: The outcomes are audited regularly. [new 2015] ). The DAFNE audit, which is the main reason for DAFNE's extra cost, does give the benefit of providing a known, cost saving outcome. If there was any one else in a similar situation, are you having any better luck getting your hospital or CCG to understand the huge mistake they're making? Thanks in advance.

Nov 5, 2016 JayBee 587 posts	Topic: DAFNE Graduate Group (DGG) / Formation of DAFNE Graduate Group (DGG) Apologies, I may have only just seen this... Is it possible for a member to attend any of the annual meetings that have minutes posted on dafne.uk.com? I didn't think to ask before now because I trusted my hospital to not let me down, but now they have, I am interested even more in supporting. I wonder what could be done to change the insurance arrangements so that it is okay for HCPs to participate... I suppose a network of DAFNE trained DSN doing weekly or monthly video conference things would be too difficult to put in place...

Nov 4, 2016 Warwick 423 posts	Topic: General Discussion / ICE Wow. I had them sent to me in New Zealand and Australia and no taxes or custom charges at all. I don't believe that we have any charges/tax to pay in either country unless the item is worth more than $400 (NZ) or $1000 (Australia) which the Road ID certainly isn't. I forgot about those charges from when I used to live in the UK. Perhaps RoadID should look at setting up a local UK operation.

Nov 4, 2016 SimonC 78 posts	Topic: General Discussion / ICE Warwick said: +1 for the Road ID. I have had once since a few weeks after my diagnosis in 2010 and it is always on me. The straps last ages, usually a couple of years at least. Hi Warwick - I agree the RoadID is quite a good bit of kit - and at a reasonable price - although I didn't like getting stung by a)customs and then b) Royal mail for extra payments. I don't mind too much the Customs charge, but I did object to Royal Mail charging me Â£8 just to tell me Customs had slapped Â£5.25 tax and by the way - you have to collect it. To be fair I asked RoadID to see if they could add the customs charges into their overseas costs - in the same way Amazon US do if you buy from the US Amazon site, and they not only gave me a small refund, but also did acknowledged it was something they needed to look at. Thanks for the post.

Nov 4, 2016 SimonC 78 posts	Topic: General Discussion / ICE HelenP said: Hi Simon, My son is an ambo and he tells me they always check the (mobile) phone (any mobile phone) as lots of information available especially with numbers listed as: HOME, WORK, GP as well as ICE. Helen Hi Helen - Thanks for the post - thats why I mentioned the ICE Apps - as its hard to check the info on a phone if it is locked and the person is unable to unlock it - IOS does have an inbuilt Medical page accessible from the lock screen - but I suspect that most people don't know it is there and so don't fill it in to make it available, and most wouldn't know how to get to it from the lock screen. The Road ID App is quite good - but there are many others, and in IOS, having seen how the Road ID does it, you can do the same thing from Notes - just open up a new Note page, press return a few times to get the start of the info below the lock screen clock, type what you want others to see - and then take a screen shot of the note page (home and power together), and set that photo to be your lock screen page - and Bob is your Aunty - the data you want available is viewable on the lock screen. This works, but isn't very neat, the proper Apps look a lot better as they are formatted nicely. Your son - and others, can treat people so much better if they have this sort of info - which is why 'ambo' staff - and other blue light services look for medical alert bracelets - and more recently phone screens. Ambulance staff do a great job - and we can help them do an even better one by giving them information they can use.

Nov 4, 2016 Helen28 2 posts	Topic: Questions for HCPs / Holidays over 30 days Helen28 said: How do I keep my insulin between 2 and 8C without a fridge? Thanks for that and I have a couple of frio wallets but hadn't tested them over that length of time. Have a fantastic opportunity to go to Canada and just nervous about the time length even though I've been diagnosed for 20 years!

Nov 4, 2016 Warwick 423 posts	Topic: Questions for HCPs / Holidays over 30 days I use one of these over summer in Australia. It keeps the insulin cool enough to last more than a month without a fridge. http://friouk.com/the-frio-wallet/

Nov 3, 2016 Helen28 2 posts	Topic: Questions for HCPs / Holidays over 30 days How do I keep my insulin between 2 and 8C without a fridge?

Nov 3, 2016 Warwick 423 posts	Topic: General Discussion / Printing the Sick-day Rules Sshh Alan! Don't tell everyone :-)

Nov 3, 2016 Warwick 423 posts	Topic: General Discussion / ICE +1 for the Road ID. I have had once since a few weeks after my diagnosis in 2010 and it is always on me. The straps last ages, usually a couple of years at least.

Oct 31, 2016 HelenP 218 posts	Topic: General Discussion / ICE Hi Simon, My son is an ambo and he tells me they always check the (mobile) phone (any mobile phone) as lots of information available especially with numbers listed as: HOME, WORK, GP as well as ICE. Helen

Oct 31, 2016 SimonC 78 posts	Topic: General Discussion / ICE I was reading on here that someone had had a Tattoo done - to tell/inform first responders of their condition - and I thought that was a good idea, and I wished I was brave enough to do it, and then on another thread, someone else was using the RoadId wrist bracelet. Over the years I have had a few of these things - but looking at the Road Id site, I thought they were very good - and so ordered a bracelet with: my 'name', 'wifes details', 'GP surgery', 'Diabetic Type 1', 'No 'Morphine' and 'metal plates in my leg' etched onto a tag. All good info to give, and then I saw they did an App - IoS and Android. The App is free - which is great, and it provides ICE info on the lock screen - again useful. So I wondered - what other good ICE things there were out there - I'm sure there are lots, and as T1 we ought to be able to inform first responders, and so collectively we should be pulling all these things together to allow other forum members to take their pick. There must be quite a few products out there for people to choose from.

Oct 27, 2016 Alan 49 284 posts	Topic: General Discussion / Printing the Sick-day Rules Thanks for that Mark - I'm relieved to find it wasn't anything I was doing wrong. It seems a bit pointless to me, because I've got round it by Copying the document and then Pasting it on to a Word document, which I can then print.

Oct 27, 2016 marke 681 posts	Topic: General Discussion / Printing the Sick-day Rules Nothing, I'm afraid we were forced to disable printing of the course handbook by the DAFNE programme team. It was made part of us being allowed to have the handbooks on the site. If you don't agree with this you need to contact [email protected] and ask them for an explanation. Its a bit of a political situation that hopefully will be learned from in the new DAFNEplus coming in the next year or so. They want to make that much more online.

Oct 24, 2016 Alan 49 284 posts	Topic: General Discussion / Printing the Sick-day Rules I've tried printing the Sick-day rules, but only get blank pages. My printer is connected and is printing normally - what am I doing wrong?

Oct 22, 2016 Peter 109 posts	Topic: General Discussion / Evaluating the Health and Self-Management In Diabetes questionnaire Alan Constable said: Peter, I followed your link to the ScHARR website and it wanted a User name and a Password, but it offered no way of setting these up, so I was unable to take part in the survey. Sorry about that. Seems the website changes the url on entry. Try this instead https://healthsurvey.shef.ac.uk/hasmid