What has the DUK forum done for you?

[Docb]

Back to the original question....

Answer, educated me.

 

[miguel81]

I was having a tough time trying to manage on my own in a foreign country whose language I found difficult to learn. After a particularly bad spell with my diabetes I just typed 'Diabetes Forums' into Google and up came this. I joined and posted details of the problems I was having at the time and asked if I would be allowed on as, though a British citizen, I did not live in the UK. Allowed on? I was welcomed with open arms. As many of you will be aware I have had many problems, actually going through one at this particular time. Members are kind and supportive for which I am extremely grateful. The Spanish health service whilst extremely effiicient and quick to respond to all manner of things is sadly lacking when it comes to diabetes. I rely solely on the information and advice of the members here which I cannot do without and visit several times a day.

 

[Ralph-YK]

This is the only place that even has a suggestion of supporting me making changes & managing diabetes.

 

[Ralph-YK]

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!

One tech forum I used to be on had n00b, novice and expert based in entirely on the number of posts you have made.

 

[Pine Marten]

I came across the forum in 2013 while googling one day, and after reading it a bit a light bulb went on and I found illumination!

I was diagnosed in 2007, given some diet sheets and more or less left to get on with it. I followed the diet sheets' advice to eat lots of starchy carbs, gained weight and after a while was prescribed Metformin. When I started reading the forum I learned about eating low carb, doing some exercise, and critically, found support and encouragement from people who lived with this thing every day - so unlike the GPs who knew so little about it. I started following the advice here, started to improve, and kept food diaries which I showed to my surgery at my reviews.

Over the years my surgery improved its knowledge, to the point where my GP told me she'd been enthusiastically telling her colleagues about my good control (anonymously of course), and I had much more support from her and the D nurse.

I do recommend the forum to others if I get the opportunity, and it has been a wonderful resource - I could not have coped without it

 

[trophywench]

One tech forum I used to be on had n00b, novice and expert based in entirely on the number of posts you have made.

Yep - it's bollards quite a lot of the time as computer software can't differentiate between complete drivel and jolly helpful.

 

[Nick Cliff]

Hi Mike
I was recommended the forum by my GP, as one of the resources offered by Diabetes UK.
I took a quick look and then jumped in with a post related to my specific situation.
I found the many and varied responses helpful - in that some made me re-think about my diet, and others reinforced what I was doing and understood.
I re-visit the forum to pick up information from others, and also to share the benefit of my experience with newcomers.
Definitely provides food for thought and a window into common experience - and the many differences between us all.
Regards
Nick

 

[SB2015]

I came to the forum after volunteering on the DUK Telephone Peer Support, which was then stopped. I was unsure about joining as I had never been involved with any forums. I was made so welcome, and that was it.

I have learnt most of what I know about day to day management of my Diabetes from others on here, and found tremendous support from other members. It has also been great seeing others at forum meet ups.

I learnt about the Libre and also about pump options from this forum, as well as pre blousing, exercise strategies, ....

Just glad that I found the forum.

 

[Ralph-YK]

I came to the forum after volunteering on the DUK Telephone Peer Support, which was then stopped.

I'd forgotten about that. I used the e-mail version. It was good. Pitty it's gone

 

[SB2015]

I'd forgotten about that. I used the e-mail version. It was good. Pitty it's gone

I was really cheesed off at the time as I felt it was an important resource for those that didn’t have computers,(which would be rare now I think) and there was still something good about actually being there to actually listen to people. However there were fewer and fewer calls and when you see how much traffic and how many members there are on here it does make a lot more sense to focus resources on this.

 

[Northerner]

It warms my heart to hear all the lovely responses here, and just how much it has helped so many people over the years 🙂 Those qualities of a warm welcome for all, good humour and genuine support across the board are what have always distinguished our community and made it such a special place 🙂

I was diagnosed 5 months before the forum started and was a subscriber to Balance, so when I got my copy on the 15th November 2008 announcing the launch (on November 14th - World Diabetes Day) I joined immediately. I was familiar with forums, having been a member of several Usenet newsgroups (the forerunners to today's forums) and a Moderator on one for a few years. I'd also been trying various existing diabetes forums, chiefly the DCUK one (which I, like many other people, thought was the Diabetes UK site - they weren't upfront about being totally separate) and a couple of US ones, dLife and Diabetes Daily, but I didn't really like the DCUK site as at the time there was a lot of spam and unsafe advice - I also didn't like the fact that I felt deceived by the name 😡 I was really pleased when I saw DUK were offering their own official site 🙂

At the time, of course, there weren't many people here - I think I was member 60, although a lot of the 'members' prior to that were test accounts. I think there were probably about 10 real people, a couple of whom had actually joined before the launch date - @ukjohn and @PhoebeC are two that I know of 🙂 Posts were thin on the ground, but new people joined every day and a community began to build 🙂

Right from the start I found it tremendously helpful - I hadn't been long diagnosed myself - and I can honestly say it has been one of the most rewarding experiences of my life being here, getting to know people, learning new things every day (still am!), and making many, many genuine friends from all walks of life and ages who I would never have encountered otherwise 🙂

I've always thought that one of the good things about diabetes is that there is so much you can do to help yourself and others, however bad things may seem. I have seen countless people over the years completely turn their lives around, and you could not find this combination of knowledge and experience in any other way. I have literally followed the 'case studies' of thousands of people - quite possibly more than some consultants, and certainly more than many GPs and practice nurses, many of whom may never encounter a Type 1, or the other subtleties of this wide-ranging condition.

I've always wished that more people could find and share in this wonderful resource 🙂 The forum wasn't well-supported by DUK in the early years, so the commonest way for people to find it was purely by accident. This hasbeen changing since 2015, when DUK began to see how precious a resource it was. One of my suggestions for many years still doesn't appear to have been taken up with any concerted effort - to tap into the huge number of 'offline' DUK support groups across the country. I used to be a member of a local group and nobody there was aware of the forum's existence I think that if the leaders of these groups were given some sort of training in the use and benefits of the forum which they could then pass on to their members it would give those members access to support outside of the usual monthly meetings which may not be able to address individual's concerns in the way the forum can.

If healthcare professionals could also be persuaded to pass on a bit of training in the use of the forum instead of simply giving out the name of the website to patients, that might encourage more people to sign up who might otherwise be reluctant to 🙂 I'm sure this would not be easy to achieve, but if it could be done, for each of those patients or support group members it would be 10 minutes far better spent than 10 minutes going through some generic 'one-size-fits-all' generic information, like a virtually useless diet sheet, for example, and it would help spread the word to people who may not otherwise be aware just how fantastic a resource this place is 🙂

 

[eggyg]

I came to the forum after volunteering on the DUK Telephone Peer Support, which was then stopped. I was unsure about joining as I had never been involved with any forums. I was made so welcome, and that was it.

I have learnt most of what I know about day to day management of my Diabetes from others on here, and found tremendous support from other members. It has also been great seeing others at forum meet ups.

I learnt about the Libre and also about pump options from this forum, as well as pre blousing, exercise strategies, ....

Just glad that I found the forum.

It’s starting up again as I’ve just volunteered. It’s called a befriending service. Do you think it’s the same sort of thing? Just “ passed” my DBS, done some Zoom training and now waiting to be partnered up. This is Cumbria though, it’s a big county with a small population and rural communities. I think this is the perfect time to start it up again. You never know they might roll it out over the country again.

 

[Jodee]

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?​

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Was it recommended? Or did you find it by searching?​

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Did you lurk first, or jump right in?​

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How has the forum helped you?​

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What sort of things make you keep coming back?​

Anyone got any short and snappy soundbites to offer??

DUK is a great support for people. Its a great forum with great people and a lovely place to come to enjoy some sharing and indulge in some exchanges in information, informative, generally and friendly communications.

It is Brilliant, supportive and transformative place 🙂

Initially I found DUK by web search when first diagnosed. It's also represented at the Desmond and Expert courses which are both great courses 🙂

I just jumped right in to the forum - I am not bashful nor slow in coming forward 🙂 (I have used forums before for other health issues)

The forum has helped me a lot, the members here with their experience and knowledge are just great, I found out about the importance of using the blood glucose monitor and the low carb diet really helpful in getting my BG levels down and controlled.

I enjoy coming back and visiting whenever just to be among people I know and am familiar with and people who understand, share, care, support, inform and just generally hang out 🙂

Now I am figuring out what the short and snappy soundbites are in order to offer them...... mmmmmm

-- Diabetes UK - Feeling OK 🙂

-- Sugar don't leave me with Diabetes (song theme tune)

-- Keep on moving toward Sugar Free (another song theme tune)
But enjoy occasionally a cream Tea

-- Pump it up and fix me up (athlete image + song pop tune)

a bit lame but maybe a wordery expert can do summat with

Does DUK have a FB page that can be shared with link to forum, DUK home page. Maybe local radios in different areas can do a DUK slot monthly or from time to time. The recipe page would be a good promoter for diabetics and non diabetics I think.

I have shared link to a friend whose husband has been living with Diabetes for a number of years concerning the page on coronavirus and diabetes and I have shared Page links with my aging mother who is borderline diabetic.

Keep up the good work all at DUK 🙂

 

[KARNAK]

I`ve got nothing to add to what has already been said, well done everyone for your comments. What I will say my Consultant who is also my Endocrinologist speaks very highly of this forum and advised me to join to gain a lot of knowledge but speak with your D team before making any medical changes. Thankyou folks for making this forum the best ever. Thankyou Alan @Northerner and Mike @everydayupsanddowns and all the team for want of a better expression thanks for saving my life, love you all. xxx

 

[Ralph-YK]

I was really cheesed off at the time as I felt it was an important resource for those that didn’t have computers,(which would be rare now I think) and there was still something good about actually being there to actually listen to people. However there were fewer and fewer calls and when you see how much traffic and how many members there are on here it does make a lot more sense to focus resources on this.

I can't remember which telephone line cost more. I'd run a couple of Diabetes Uk ones (inc. Peer Support), Cariomyopathy, and several other places. The call charges added up. (Which is why I used the e-mail contact for the Peer Support).
Although I've been on mobile internet, with limited dater most of the time I've been on here, it's cheaper.
The Peer Support was different, and I would have like to have kept both.

 

[Ralph-YK]

One of my suggestions for many years still doesn't appear to have been taken up with any concerted effort - to tap into the huge number of 'offline' DUK support groups across the country.

The support group I've been to the most, the guy running it (at the least) appears completly uninterested in the forum.

 

[Northerner]

The support group I've been to the most, the guy running it (at the least) appears completly uninterested in the forum.

Yes, without wishing to denigrate the work they do I think that some of the group leaders, if they are not comfortable themselves in using the forum, are less-inclined to promote it They might have less excuse though if promotion was officially 'pushed' by DUK 🙂

 

[everydayupsanddowns]

Does DUK have a FB page that can be shared with link to forum, DUK home page

I think social media posts (eg FB page) are exactly what is being planned, and why Diabetes UK was hoping to get some sound bite quotes, examples and experiences that might be used 🙂

 

[Ralph-YK]

I think social media posts (eg FB page) are exactly what is being planned, and why Diabetes UK was hoping to get some sound bite quotes, examples and experiences that might be used 🙂

Oh, diabetes support groups FB group is something that gets mentioned.

 

[freesia]

I found the forum not long after being diagnosed as type 1. My DSN had recommended the website to look at and as i felt frightened by the diagnosis i tried to find out as much as i could. I must admit that i did lurk around before finally summoning up the courage to post anything. One time i did post about how frustrated and worried i felt having diabetes and messages i had back made me feel i wasn't alone either in my feelings or my daily battle with levels. I've used the forum to find out information and ask questions and have always found everyone to be helpful and kind. Keep up the good work everyone, not sure what i would do without the forum