New issue of 'Balance'

[Copepod]

I vote for Eistein's "Delivering Untold Kodswallop" - because codswallop or kodswallop is such a good word!
I'm not a Balance subscriber, and, anyway, finally got over to my family last night, hence just this very short post & nor replies to PMs until I get home, probably tonight. But will take a look when I get to work journal rack on 5th Jan.

 

[Einstein]

I vote for Eistein's "Delivering Untold Kodswallop" - because codswallop or kodswallop is such a good word!
I'm not a Balance subscriber, and, anyway, finally got over to my family last night, hence just this very short post & nor replies to PMs until I get home, probably tonight. But will take a look when I get to work journal rack on 5th Jan.

I know it was with a C but it just summarises what they regurgitate.

Did anyone else notice they were quoting HbA1C results in percentages at points - e.g. 'if type 2's drop 1% off their HbA1C then they are less..' shouldn't they be promoting the new 'points mean surprises' method of quoting HbA1C results?

Ah, ok, they should but this is Balance - sorry I forgot 😱😛

 

[Twitchy]

Where are the normal people??

Don't know about anyone else, but I tend to find that Balance seems to either be miserably depressing (eg tales of woe re complications or insensitive work colleagues etc) or super-humanly perfectionist (eg had T1 for 70 yrs, just finished climbing Everest without oxygen, now off to wrestle sharks in a bath tub for charity...). Until the recent Black Sheep article, I've been wondering where all the "normal" people are...maybe this is a sign of light at the end of the tunnel?

Having had a bit of a moan about the lack of info re control / support post birth, esp breastfeeding etc I was also bitterly disappointed at the half page effort on the subject in which they went into no depth at all & simply regurgitated the basic "facts" (which I personally found erroneous!) of breastfeeding will lower your sugar levels & help your control...no useful info as to, for example, how much it will lower your sugar levels by (i realise this will be a big range, but a range of some sort would at least have been a start - 1mmol? 10?!)

I guess part of the problem is that they feel they have to cater for all - and when T1 & T2 can be so different that must be a challenge...which might be why a lot of the articles don't feel very relevant. I'd also like to see more about what DUK gets up to re research...

That said, I do generally think DUK is better than nothing...not sure what other "diabetes" charities there are though...

Anyway, just my tuppeneth worth...

 

[Northerner]

For us Type 1's there's JDRF!🙂

 

[Twitchy]

JDRF...umm, know this is probably a really stupid thing to say...😱...but is that also for adults with T1, or is it all focussed on the "juvenile" years? (Sorry if that is totally dim...put it down to pregnancy brain or something!) Are they actively looking into cures etc? (Would be glad to support that!!!)

 

[Flower87]

'Juvenile Diabetes Research Foundation (JDRF) exists to find the cure for type 1 diabetes and its complications, and is the world's leading charitable funder of type 1 diabetes research.'

So all children and adults with T1. 🙂

 

[Einstein]

'Juvenile Diabetes Research Foundation (JDRF) exists to find the cure for type 1 diabetes and its complications, and is the world's leading charitable funder of type 1 diabetes research.'

So all children and adults with T1. 🙂

Which is great

Just leaves the question what does DUK fund in terms of research??? 🙄

 

[aymes]

Well my copy arrived, can't say it was particularly worth the wait. Other than Arthur's column at the back I found the whole thing, particularly the letters and the facts and figures, really depressing.

 

[Mand]

I, too, am very disappointed in DUK. I am a member because of my son. I receive a copy of balance and my son used to receive a copy of 'on the level' a magazine aimed at older kids. He enjoyed receiving and reading it but now they have stopped it due to lack of funds! They have said that we have to look at it on-line but that won't work for us. When my son is on the computer he is playing games or chatting with friends so not interested in reading about 'd'. Whereas the copy of the magazine, lying about in his bedroom, he would look through and i was happy that he was getting educated by it in a way suitable for his age group. I phoned DUK to complain but they just said sorry but not enough funding.

We also had to change to be 'supporting members' which meant that both me and my son are members and they have sent both me and my son a copy of Balance!!!!! I am not happy about this because if funds are tight then why send two copies of the same mag to the same household! Do they think we do not communicate or share!!! Also, and this is where i am very unhappy, Balance mag (particularly this issue) is not suitable for a 13 year old boy!! It is far too adult and hard hitting. Fortunately i got to the post before he did and took it away (i already knew of its content as my copy had arrived the day before). There are some articles suitable for him so i will cut those out to show.

I tried to phone them yesterday to complain but got no reply. I am serously thinking of cancelling my membership. I could then donate to juivenille research instead? I have Sweet mag on subscribtion and like that too.

Anyone know if any other organisation do a mag for teenagers?

Mand

 

[Northerner]

I tried to phone them yesterday to complain but got no reply. I am serously thinking of cancelling my membership. I could then donate to juivenille research instead? I have Sweet mag on subscribtion and like that too.

Anyone know if any other organisation do a mag for teenagers?

Mand

This is pretty awful Mand - they don't have resources to produce something that your son (and undoubtedly thousands of other children) found useful? When there seems to be a broad consensus here that Balance is largely a waste of money? And they send you two copies???!!!!! That is appalling!

There is a new magazine from JDRF, but it's only produced twice a year currently:

http://www.jdrf.org.uk/page.asp?section=383&sectionTitle=T1+magazine+for+kids

 

[Einstein]

This is pretty awful Mand - they don't have resources to produce something that your son (and undoubtedly thousands of other children) found useful? When there seems to be a broad consensus here that Balance is largely a waste of money? And they send you two copies???!!!!! That is appalling!

There is a new magazine from JDRF, but it's only produced twice a year currently:

http://www.jdrf.org.uk/page.asp?section=383&sectionTitle=T1+magazine+for+kids

I thought children with diabetes were one of their 'sweet/focus groups'? Or is this why they have been targetted with their own web site - lucky kids eh? 🙄

There are so many issues with this organisation that I don't understand and frankly now don't care about. My only concern is that people with diabetes continue to pour their hard earned cash into this hole and get nothing from it.

As members of a charity there should be voting rights, and there were some with DUK, which while limited, don't seem to have changed. Except I can't recall seeing too much from them asking us to vote on trustees etc of late. This is where I see their shifting the members to 'supporters' is an important issue. They remove their accountability from all of us, to a select few who don't seem to standby their indicative agenda.

Soon if we're not careful members will have the say, but becoming a member will be by invitation only, there are other charities who run this way and there is never a change of thought or process within those organisations. Of course if you're invited, you're normally friends with the person who invited you. It becomes a club with an agenda, rather like a non-hereditary house of Lords.

Clearly the more we hear and Mands account clarifies this yet again, there is no accountability behind the charity on any level.

The current issue of Balance was a poor communication attempt to get diabetes back to basics. It wasn't good on the eyes of anyone nevermind putting under the nose of a 13 year old boy. If the web site for their younger members is anywhere near the standard of the main site then it's cost a lot of money and will be fairly useless.

Why do DUK not listen to a single word anyone says to them? Oh, they're no longer there for the membership, I bet having all these diabetics around must be a real pain for them...

 

[Northerner]

One thing I must say in DUK's favour is that I was given their guide to type 1 diabetes magazine at diagnosis and found it to be excellent. It covered everything I needed and wanted to know at that time and gave me real head start in understanding what to expect. I presume they do a similar guide for type 2.

Given that these publications cover the 'basics' perfectly adequately, where's the need to reproduce that in Balance? Especially when that is inferior to something already produced by the same organisation. I'd like to see some kind of policy statement from Balance, outlining what their agenda is, their principal target audience (older Type 2 with no web access?) and what they hope to achieve each year.

It seems pretty formless to me, with insubstantial articles each issue going over pretty much the same ground with little real focus. I know they will be getting new subscribers all the time, but the basic info could be put into a much more concise section reproduced as a reference section each issue.

 

[Einstein]

One thing I must say in DUK's favour is that I was given their guide to type 1 diabetes magazine at diagnosis and found it to be excellent. It covered everything I needed and wanted to know at that time and gave me real head start in understanding what to expect. I presume they do a similar guide for type 2.

I did wonder when I did my last post about these publications that used to get sent to all new members. Perhaps not now as it's a costly exercise?

Perhaps every three years members should get a new, revised copy for their reference. Mine was very useful at the time.

A few things back in the dim and distant past were useful about DUK.

Considering these type 1 and type 2 guides (from memory) where the size of balance, how did they expect to do a back to basics for both types in one magazine with news, adverts and Arthur Smiths page?

One thing in back to basics I couldn't find was the page by Nursey on 'Injecting Etiquette by someone Whose Never Stuck a Needle in Herself' did they run out of room, or simply think Arthur Smiths guide was as complete as it needed to be 🙄

 

[Mand]

Thanks Northener. I have registered for a copy of the magazine. 🙂

Such a pity that we all feel so much disappointment with DUK. I have to say that i found much of their material very helpful when my son was first diagnosed so could not fault them for that but it is the ongoing support that is lacking, though very much needed.

 

[Northerner]

Thanks Northener. I have registered for a copy of the magazine. 🙂

Such a pity that we all feel so much disappointment with DUK. I have to say that i found much of their material very helpful when my son was first diagnosed so could not fault them for that but it is the ongoing support that is lacking, though very much needed.

I think that's the thing Mand - we all want them to do well, which is why we are so disappointed. They must be one of the first places EVERYONE in this country goes to when diagnosed. Also, I wonder how many newly-diagnosed Type 1's are told about JDRF? I wasn't, and even when I first started looking around the web I assumed it was for children only - shame the name is misleading these days. I'd love to know the statistics for numbers of people diagnosed Type 1 in adulthood as opposed to childhood - I suspect it is actually more common in adults, and given that there are Type 1s that are 20 years older than (even!) me, shouldn't the 'Juvenile' be dropped? FGS, I was 49!😱

 

[Sugarbum]

I didnt really take any notice of the JDRF until you did your sponsored run N and then I linked to their website! Such a shame.

 

[Mand]

Good point Northerner! I guess it is a bit mis-leading. I know several adults diagnosed with type 1. You are right, i think most people turn to DUK first. It is a pity that we have to seek out so much support. It would be so much easier if a list was available at time of diagnosis with all the details of places for support.

All i can say is thank goodness for the internet which allows us to find so much support. I also like the list in 'Sweet' magazine that gives lots of helpful places for support.

And most of all - thank goodness for this forum!!!!!!!!!! 🙂

 

[Einstein]

I think that's the thing Mand - we all want them to do well, which is why we are so disappointed. They must be one of the first places EVERYONE in this country goes to when diagnosed. Also, I wonder how many newly-diagnosed Type 1's are told about JDRF? I wasn't, and even when I first started looking around the web I assumed it was for children only - shame the name is misleading these days. I'd love to know the statistics for numbers of people diagnosed Type 1 in adulthood as opposed to childhood - I suspect it is actually more common in adults, and given that there are Type 1s that are 20 years older than (even!) me, shouldn't the 'Juvenile' be dropped? FGS, I was 49!😱

I was 31 - how about a survey? In say age ranges 0-5, 6-11, 12-16, 81-21, 21-30, 31 plus?

Yeah, ok, I'll work out how to set it up Northerner, off to walk Bruce, back in a few hours - if not, send the search party, we're off to Shear Water Forest!

 

[Flower87]

We also had to change to be 'supporting members' which meant that both me and my son are members and they have sent both me and my son a copy of Balance!!!!! I am not happy about this because if funds are tight then why send two copies of the same mag to the same household! Do they think we do not communicate or share!!! Also, and this is where i am very unhappy, Balance mag (particularly this issue) is not suitable for a 13 year old boy!! It is far too adult and hard hitting. Fortunately i got to the post before he did and took it away (i already knew of its content as my copy had arrived the day before). There are some articles suitable for him so i will cut those out to show.

I tried to phone them yesterday to complain but got no reply. I am serously thinking of cancelling my membership. I could then donate to juivenille research instead? I have Sweet mag on subscribtion and like that too.

Mand

This used to happen in my family too, with the catalogues and raffle tickets - they used to send about 3 copies to our house - me, my sister and my parents. My mum complained so many times and asked about the cost of sending countless copies to 1 house and they said 'it came from a different pot of money to donatations' it doesnt matter what pot of money it comes from - its still a waste!!

 

[Casper]

If I can just stick my two penn'orth in - I do feel Balance magazine is incredibly depressing, you must do this, that or the other if you want to survive - or: look at the amazing things you can achieve with diabetes - the shark wrestling whilst potholing in the Atlantic spring to mind. did anyone read that article? No? Must've just been me.

Also seems targeted at the type 2s - no offence meant, I know ther are far more of you!

And I was 39 and a half when diagnosed!!

Happy New Year to all!!!