What has the DUK forum done for you?

everydayupsanddowns

Administrator
Staff member
Relationship to Diabetes
Type 1
Without wanting to go all Monty Python, I was just wondering if anyone would like to share their experiences of the forum, and the differences it has made to their diabetes management, their confidence, and their life with diabetes.

I truly believe the forum is a brilliant, supportive and transformative place - but the number of people with diabetes who join and get the benefit is tiny when compared to the entire population of PWD in the UK.

Diabetes UK are trying to work out how to better spread the word and encourage other to join, engage and experience the support and friendship of the forum for themselves, and it would be great to have some of your thoughts about how you came to join and the difference it has made to you.

How did you hear about it?
Was it recommended? Or did you find it by searching?
Did you lurk first, or jump right in?
How has the forum helped you?
What sort of things make you keep coming back?

Anyone got any short and snappy soundbites to offer??

Diabetes UK is looking for submissions to use for a social media campaign and may contact some of you.
 
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Amity Island

Well-Known Member
Relationship to Diabetes
Type 1
the number of people with diabetes who join and get the benefit is tiny when compared to the entire population of PWD.

Diabetes UK are trying to work out how to better spread the word
Hi Mike,

On the mobile phone app, I find the forum invisible (well hidden) on the main diabetes.org.uk website.

Have a look, see if a new user could find or know about the forum. I can't find anything, any links on the main page or in the main menu.

Besides that, yes, the forum is brilliant, it just needs a link adding to the main landing page so people know about it.

 
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trophywench

Well-Known Member
Relationship to Diabetes
Type 1
Hear Hear @Amity Island !

I first joined the forum in its very early days and found it mainly inhabited by T2s with very little content for a struggling T1 - @ukjohn was already on it and still was until he and his parrot moved home earlier this year - so he's gone missing since (he said he would until he got things sorted there - so TBH, I'm more than a bit concerned about him by now) Anyway - I had to find something useful and did, successfully. I had to register in order to access the forum and therefore note it wasn't going to be much help initially, so used another Forum nickname I adopted after Pete joined a forum re his Triumph Trophy motorbike and I wanted to join a conversation on there, rather than use the name I've had since I was in Junior school - originally used by our headmaster to my older sister, he just carried on using it whenever he was in jesting mood, and one of my classmates also called Jennifer carried it on into senior school, cos it was an easy way of distinguishing between us, and between the Sue's, hence our little group of 4 from senior school still comprise Jen, Sedge Pheas (Sue Pheasant) and Fliss (- only one Felicity so NP) And we're all over 70 now ….
 

Bexlee

Well-Known Member
I lurked for a little while, reading but not posting.....I was too scared too to start with as it seemed a place where everyone knew each other ! I now feel as if I know everyone.
I love the waking average post which is just general chit chat and a little snippet into other lives.

My DSN suggested I took a look at the website not specifically the forum then I found the forum.....I’m pleased I did

It’s great you can pretty much ask any question and someone will have a bit of advice or an idea or give you a confidence boost.

Not really sure how you can get it out there more. I sometimes wish there could be a little pack every diabetic is given with useful information in it like websites etc. I know you can join things but you need to know they’re there in the 1st place.....maybe there is a info pack you get but I didn’t!

Keep up the great work :)
 

rebrascora

Well-Known Member
Relationship to Diabetes
Type 1
I was already a huge fan of forums and the wonderful learning resource they provide from being a member of two others (both animal husbandry), so when I was diagnosed and given Diabetes UK pack it was the logical thing to do and yes I jumped straight in... I'm not a one for lurking.
The forum has revolutionised my diet and provided the day to day information and support I needed to manage my diabetes and probably more importantly, keep my sanity.

I keep coming back to learn more and to help others who are in the situation I was a year ago... overwhelmed, reeling from the shock and struggling to make any progress via the NHS advice I was being given. I also find the support of being part of a community which understands the ups and downs and subtle nuances of managing diabetes, invaluable and to be able to bounce thoughts and ideas off others who are more experienced.
 

rebrascora

Well-Known Member
Relationship to Diabetes
Type 1
I think part of the problem with many diabetics is that they are prescribed tablets and expect (or bury their head in the sand and hope) that will sort it, rather than put in some graft to change their lifestyle. There are very few other conditions where lifestyle changes are more effective than most medication, so the majority of people will assume that the tablets the doc gave them will fix it. It may well also be a lack of the right dietary information.... which is a problem with the NHS ....but also many people are too busy to take time out to completely change their diet and lifestyle (even if they are open to doing that) and why should they bother when the doc gave them some tablets to sort it. You can understand that mentality even if it doesn't match up to reality.
Maybe more doctors should offer patients an opportunity to make progress without medication for a 3 month period and providing a BG meter and test strips for that initial period instead of medication would be more helpful to get people committed to the idea of this being their responsibility to manage it and the HCPs just provide the necessary resources together with a link to the forum for day to day guidance.

Obviously the above relates more to Type 2 than Type 1. I still kind of see myself as both.
 

Ralph-YK

Well-Known Member
Relationship to Diabetes
Type 2
I think part of the problem with many diabetics is that they are prescribed tablets and expect (or bury their head in the sand and hope) that will sort it, rather than put in some graft to change their lifestyle. There are very few other conditions where lifestyle changes are more effective than most medication, so the majority of people will assume that the tablets the doc gave them will fix it. It may well also be a lack of the right dietary information.... which is a problem with the NHS
I was actively discouraged from doing anything, & excluded and dismissed as the patient. I got brushed offf by practice nurse when I tried to talk to her about my diabetes & being able to control it. I was also told not to come on here, as it'd just confuse me.
Burying head in the sand is aided & abbeted by "authority" (HCP).
[Edited]
 

rebrascora

Well-Known Member
Relationship to Diabetes
Type 1
I was actively discouraged from doing anything, & excluded and dismissed as the patient. I was also told not to come on here, as it'd just confuse me.
Burying head in the sand is aided & abbeted by "authority" (HCP).
Wow! How patronising is that!
 

grovesy

Well-Known Member
Relationship to Diabetes
Type 2
I am an early joiner, I think it was mentioned in Balance Magazine. Back then it was just under the Diabetes UK banner but they had little input.
 

Robin

Well-Known Member
Relationship to Diabetes
Type 1
I can’t remember how I found out about the forum. I stumbled across it by accident, I think, when I was looking for some information. I lurked for ages. I wasn’t sure about forums, having never been on one, but took the plunge eventually and got a warm welcome, so decided to become a permanent fixture.
I’d been feeling rather adrift, because I’d been discharged back to my GP for all diabetes care, and the nurse at the surgery had just taken over the job, and was only just getting trained. And then only in Type 2!
If it wasn’t for the forum, I’d never have known about the Libre, and I’d never have discovered that Levemir was a better option for me than Lantus (and I’d never have 'met' all the lovely people on here, some of whom I’ve now met in real life).
 
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grovesy

Well-Known Member
Relationship to Diabetes
Type 2
Hear Hear @Amity Island !

I first joined the forum in its very early days and found it mainly inhabited by T2s with very little content for a struggling T1 - @ukjohn was already on it and still was until he and his parrot moved home earlier this year - so he's gone missing since (he said he would until he got things sorted there - so TBH, I'm more than a bit concerned about him by now) Anyway - I had to find something useful and did, successfully. I had to register in order to access the forum and therefore note it wasn't going to be much help initially, so used another Forum nickname I adopted after Pete joined a forum re his Triumph Trophy motorbike and I wanted to join a conversation on there, rather than use the name I've had since I was in Junior school - originally used by our headmaster to my older sister, he just carried on using it whenever he was in jesting mood, and one of my classmates also called Jennifer carried it on into senior school, cos it was an easy way of distinguishing between us, and between the Sue's, hence our little group of 4 from senior school still comprise Jen, Sedge Pheas (Sue Pheasant) and Fliss (- only one Felicity so NP) And we're all over 70 now ….
I riealised he had been seen since just after his move, when you mentioned it, he is not a fan of Diabetes UK increased involvement.
 

Freddie1966

Well-Known Member
Relationship to Diabetes
Type 1
It has given me an immense amount of support when I was first diagnosed it took 10 weeks to see a consultant I don’t know what I would have done without this forum . I was told to take so many units of insulin if I hadn’t got advice from everyone I would have ended up permanently hypo or eating a lot of food . Thanks to everyone x
 

Flower

Well-Known Member
Relationship to Diabetes
Type 1
I happened upon the forum when searching about an eye problem and started reading. I thought you all must somehow know each other as it seemed such a friendly place. I started lurking regularly and reading threads then one August Bank Holiday I decided to join - I almost felt like I was gate crashing but I was welcomed and have had nothing but support and kindness since.

I hadn't ever spoken about my diabetes since diagnosis and it had really meddled with my mind during sight loss and feet problems. It was such a relief to find people who talked about HbA1c and what an absolute pain diabetes can be.

I've made some lovely friends virtually and in reality at meet ups, that is such an amazing bonus I hadn't even considered. Having a laugh about the whole thing has done me the world of good.

I keep coming back to see how people are doing, to see if I can offer any pearls of wisdom and to share the joy of an in range blood sugar!:)

@Amity Island , the link button to the forum is on the front page across the top next to Membership but I agree it is certainly not prominent.
 

Sharron1

Well-Known Member
Relationship to Diabetes
Type 2
I riealised he had been seen since just after his move, when you mentioned it, he is not a fan of Diabetes UK increased involvement.
Without wanting to go all Monty Python, I was just wondering if anyone would like to share their experiences of the forum, and the differences it has made to their diabetes management, their confidence, and their life with diabetes.

I truly believe the forum is a brilliant, supportive and transformative place - but the number of people with diabetes who join and get the benefit is tiny when compared to the entire population of PWD in the UK.

Diabetes UK are trying to work out how to better spread the word and encourage other to join, engage and experience the support and friendship of the forum for themselves, and it would be great to have some of your thoughts about how you came to join and the difference it has made to you.

How did you hear about it?
Was it recommended? Or did you find it by searching?
Did you lurk first, or jump right in?
How has the forum helped you?
What sort of things make you keep coming back?

Anyone got any short and snappy soundbites to offer??
Like many people I was diagnosed, received zero advice from the GP and away I went with my perscription for metformin. I found the website by accident and yes, I did lurk but then decided to join. From then on I have learnt how to manage my diabetes. I regularly return with additional questions. It is very important to me - it helps loads
 

eggyg

Well-Known Member
Relationship to Diabetes
Type 3c
I was diagonosed October 2010 as Type 2 after a distal pancreatectomy. I bought a book in Waterstones about Type 2, read it and then thought, hang on, I’ve had two thirds of my pancreas removed this isn’t describing me. In November I Googled diabetes, I think, and came across this forum. I’d never ever been on or seen a forum but I bit the bullet and signed up. I basically asked if there was anyone like me. I got two replies from two others Twinny? and a Martin who recently started posting again. I cried, I wasn’t the only one. As the years have past, I now know I’m 3c and am now on MDI. Both of those are only because of this forum, it made me question my DSN about things. It took a few years though. I would never have known about DAFNE and fought to go on it as I wasn’t “ allowed” as I wasn’t a “proper” type 1 diabetic. I wouldn’t have heard of the Libre for certain. But most of all I wouldn’t have met, both online and in real life, the many new friends who “get” me.
 

Amity Island

Well-Known Member
Relationship to Diabetes
Type 1
I happened upon the forum when searching about an eye problem and started reading. I thought you all must somehow know each other as it seemed such a friendly place. I started lurking regularly and reading threads then one August Bank Holiday I decided to join - I almost felt like I was gate crashing but I was welcomed and have had nothing but support and kindness since.

I hadn't ever spoken about my diabetes since diagnosis and it had really meddled with my mind during sight loss and feet problems. It was such a relief to find people who talked about HbA1c and what an absolute pain diabetes can be.

I've made some lovely friends virtually and in reality at meet ups, that is such an amazing bonus I hadn't even considered. Having a laugh about the whole thing has done me the world of good.

I keep coming back to see how people are doing, to see if I can offer any pearls of wisdom and to share the joy of an in range blood sugar!:)

@Amity Island , the link button to the forum is on the front page across the top next to Membership but I agree it is certainly not prominent.
Hi Flower,
Sorry, I meant to say it's not visible on the mobile phone app. It is visible on a pc browser.
 

brisr949

Well-Known Member
Relationship to Diabetes
Type 1
I found here by searching and hoping ti find somewhere like here, i lurked for a while as i was finding answers just by looking through threads..then decided to join as i had a few questions that i couldn't find the answers to and im so glad i joined. I think you know how i feel about this place and the wonderful people on here..its changed my diabetic life way way for the better and thats down to all the help and support ive recieved here.

Adam.
 

stephknits

Well-Known Member
Relationship to Diabetes
Type 1
I found it through looking on the DUK website I think. As lots of people know, I was wrongly diagnosed type 2, but didn't know it and was really struggling. Nothing o did seemed to be working and I felt really guilty that I was getting it so badly wrong. I lurked for quite a while and then took the plunge. If it wasn't for the forum I wouldn't have started testing and certainly wouldn't have taken steps to question my diagnosis. The support and encouragement I received was literally a life saver. Fast forward to a few weeks ago and once again the forum stepped up to make what were some of my darkest days so much the brighter. I will never forget sitting outside the acute assessment ward of the hospital at two in the morning and being told I couldn't see my daughter who had just been diagnosed type 1. The first thing I thought was to reach out to the forum. There I wouldn't have to explain how I felt, people would just know. The messages I received were so wonderful, thoughtful, caring and useful.
So thanks to everyone who make this such a great, supportive community.
 

Lanny

Well-Known Member
Relationship to Diabetes
Type 2
When I became a diabetic in March 2001 my hospital team suggested I join Diabetes UK which I did for a year. Back then there was no forum & the only form of contact & advice was “Balance” magazine. Whilst helpful in my early days it was only one way communication. I also, noticed & felt that it was mostly about T1’s & not enough about T2’s. I was a new T2 on tablets, the new one then, of Novonorm, generic is repaglinide, I think as I’ve stopped taking it a long time ago when I moved onto insulin. So, all the carb counting stuff didn’t really apply to me & went over my head! Although, I carried the DUK phones numbers in my tel/address books & then, my various mobile phones’ contacts list, I always felt reassured to have those phone numbers in case I ever needed it for advice etc, especially the international number when abroad on holidays, I wasn’t a member anymore & had no contact. It was like me always having an asthma inhaler on me in case of an attack even though I grew out of asthma from my teens into my mid/late 40’s: it was reassuring to have it to hand; but, actually periodically dumped unused & replaced as the dates expired! Ironically my asthma has returned now, since 2017, & I actually really do need to have that inhaler on me & to hand!

I knew from the start of the DUK charity but, had no idea at all of an online forum. I only discovered that when all of a sudden my GP practice started imposing a blanket change of test strips & I didn’t have the meter that would take those test strips. My chemist didn’t have the meter either, I asked, so I looked online to buy the test strips for the meter I’d been using for 15+ years. I was horrified by the prices & the best price I found was on the Diabetes UK online Shop. So, I bought 2 boxes of 50 strips each which didn’t last me very long as I was going through a series of hypos then, Jan/Feb 2018 & had to drastically reduce my insulin doses. At first I felt the hypos but, lost that awareness as they continued & I was testing a lot more since I was relying on the meter to tell me of a hypo! I couldn’t get any more of my test strips from my GP & I didn’t know what to do as I knew ai couldn’t afford to keep buying my test strips! I had to buy more from the DUK Shop but, in process discovered a small, in text size, link to a forum that I never knew existed!

I started reading & got to know what the forum was like: my only experience before was message boards for tv shows I liked; was badly hurt by personal comments made by “trolls” & never joined joined another one again. I was very wary of forums & message boards & avoided them all! For me, in the absence of all person to person contact & all the things that the senses, instincts etc tell you, there are only thoughts left through the text written. So, having my thoughts attacked by derogatory comments was deeply personal & extremely hurtful to me: more than anything else, outward appearances etc; what I think is what I am!

But, it wasn’t long before I started posted myself: got to know you lot for the supportive, kind, helpful & even funny, humorous lot you are! Also, got my test strips problem sorted out thanks to the advice I received here.

I read as much as I could the first few weeks & months, soaking everything up like sponge. I actually learnt more from these forums than I did in 17 years, back in March 2018, of being diabetic: was given a meter to test my blood sugars as they had to give me one, I learnt from a lot of T2’s that aren’t given meters, because I was started on blood lowering medication right from the start. Other than checking for hypos & not letting BS go too high when ill, I, & I learnt from here like a lot of T2’s left mostly on their own, didn’t learn how to use meter readings to change & adapt what I eat: learnt a very valuable & useful lesson, from here, to “eat according to my meter”! I also learnt a lot about insulin use. I had only been on insulin for a few years before discovering these forums & was very dependant on the fixed doses I was given. I learnt, from here, what each of my insulin’s, Levemir & Novorapid, did, how they worked, how I could change my own doses to suit my needs, (shush, don’t tell on me, when being deliberately naughty in eating something I KNOW will raise my BS), & how to tell which insulin I needed to adjust (when & how)! Not that I’m in perfect control all the time, even now, but, have a much better understanding of my own diabetes & manage it better.

I really like the mix of everybody across the board of diabetes & I actually find now, not the case back in 2001, that T1’s advice relevant, & helpful, to me as I’m on insulin: not every aspect as I still have insulin resistance that’s not so much the case with T1’s; also, don’t carb count & still have more or less fixed doses that change when my needs change.

But, there was something that really concerned me when I first joined these forums & has now changed that I put forward. The labels attached to each member could be deceiving & gave others, especially newbies like I was, the wrong impression: eg, new member, up to experienced member, which I found, to my surprise & dismaying concern, very quickly after I’d posted over 100 posts. I used those labels to assess & judge how experienced members are & how much I could trust the knowledge behind the advice given. I was REALLY concerned not to wrongly advise someone when I don’t really know myself: just because it said experienced member attached to my name. I like the new labels of “well known member” much better as it’s less indicative in the implications of the expert knowledge, or not, of members.
 
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trophywench

Well-Known Member
Relationship to Diabetes
Type 1
Mmm - the 'nomenclature' thing is purely an accident of forum software @Lanny - but there again I only know that having been closely involved in one diabetes forum for a very long time, otherwise I wouldn't, and don't even know what I'm labelled offhand! It doesn't concern me what sort of label people have cos sometimes people aren't right even though they're Admin or Founder Member or whatever! Everybody human makes mistakes!

PS I see I'm Well-Known too, so snap!
 
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