The Diabetes Support Forum

With the recent launch of our new homepage, we’ve included a “Community” section where you can see the latest posts from Facebook, Twitter and this blog site – along with posts from our Diabetes Support forum.

If you’ve not done so already, it’s worth popping by the forum for a visit. We’ve asked Alan, the Head Moderator, to answer a few questions and tell you a bit more about it – and why it’s such a huge help for people with diabetes.

1. Who are you and what do you do?

I’m Alan, and I am the Administrator for the Diabetes Support Forum. Along with a team of moderators I monitor the forum ensuring that people get responses, that the forum guidelines are being adhered to and keeping out unwanted material such as advertising or inappropriate links that may mislead the genuine members.

2. Sounds interesting – tell us more about the diabetes support forum. Who uses it?

The forum is now nearly four years old and was originally set up to provide a source of support for people affected by diabetes by providing a platform where experiences can be shared and information exchanged. Diabetes can be a very isolating condition and it’s good to know that you are not alone whatever your situation might be.

We have members covering the full spectrum – all age groups from young teens to senior citizens, with sections covering pregnancy, parenting, exercise, weight loss and many more topics, so there is something for everyone.

3. What sort of things do people talk about?

Anything and everything! From toenails to nostrils to the hair on your head, there is no topic or question that is considered ‘silly’! Whether it is a particular problem or just sharing day-to-day experiences, talking to people who ‘get it’ can make such a difference to how people deal with their diabetes.

It’s not all about diabetes though, we have a very active ‘off the subject’ section where non-diabetic topics are discussed, and a humour section to provide a daily dose of light relief! Up-to-the-minute news items concerning diabetes and other health-related topics are regularly posted. The forum also arranges regular meetings up and down the country where members can meet face-to-face, which have proved extremely popular.

4. What are the most common types of queries people post about?

We get a lot of posts from newly-diagnosed people who have often been left with confusing or inadequate information from their healthcare teams. We can help assure them that the outlook is positive and direct them to reliable sources of information to help set them on the right track and allay their concerns.

We also get members who have been diagnosed long-term but are struggling or looking to share their experiences with like-minded people. Some topics that are regularly discussed include:

• the provision of self-monitoring equipment and test strips, and the necessary education for efficient and appropriate use to help people manage their diabetes well
• the merits and pitfalls of different medication and insulin regimes
• children with diabetes and the particular problems they face
• insulin pumps
• diet and ‘diabetes-friendly’ food
• problems with pharmacies and prescriptions
• diabetes complications and their treatments
• other diabetes-related illnesses
• exercising, either to lose weight or the additional problems that can come with balancing food, insulin and activity levels
• success stories!

With almost 30,000 separate discussion and over 380,000 posts currently there is very little that has not been discussed at some time or another. As the forum is easily searchable, this provides a huge database for people looking for past discussion on a particular topic.

5. So people share their advice on anything to do with diabetes – and all different types?

Yes – we have members of all types and relationships to diabetes, including carers, partners and spouses, people who have become diabetic due to removal of their pancreas, Type 1, 1.5, 2, gestational, some with days of experience and some with decades!

6. It all sounds wonderful – how do I sign up?

It is free to register, just go to the registration section of the forum and follow the instructions. You can be anonymous, giving only as much personal information as you wish. Anyone can read the forum posts, but only members can participate – this makes sure our members are kept safe from unwanted posts, such as spam advertising or scams.

7. Are there other places that people can go to for advice and support?

Yes. Diabetes UK’s Careline service provides email and telephone contact, and they also offer a Peer support service and a Facebook page. The advantages of the forum are that it is available 24/7 (although quieter in the middle of the night!) and you have access to hundreds of people at the same time so there is a good chance someone has an answer or shares your experience. Also, as members post more, you can get to know them better and know their own particular history so responses can be tailored more directly to a person’s situation.

8. Can you share an example of how you’ve seen the forum help someone manage their diabetes?

Very difficult to single out one particular success story from many hundreds I have encountered. One unusual case involved a person who had undergone major surgery and become diabetic due to the removal of their pancreas.

As a consequence, blood glucose control was proving extremely difficult, but with the help and advice of other members who suggested an insulin pump might be the most appropriate treatment, she found a good clinic and is now managing well on her new pump. Her healthcare team had not even mentioned this as an option, so she had been completely unaware of it. As a consequence of her success another pancreatic diabetic has also pursued the pump option.

We have also had a number of cases where a person has been left frightened and confused by their diagnosis, but who is now enjoying the best of health and good diabetes control after reading about the experiences of others who had been there before.

We often receive comments that they would have not got there without the help of fellow forum members. We are not medical professionals, so cannot give medical advice, but we can exchange opinions and experiences that members can then use as persuasive arguments if they feel they are not receiving good care.

The camaraderie and friendships that have been formed are life-changing and life-enhancing, we try and promote a positive view whenever possible so that people feel free to express their concerns without judgement or censure, often in sharp contrast to the often negative portrayal of people with diabetes in the media.

Diabetes is largely self-managed, and that can be difficult at times, but with the range of knowledge and experience available from thousands of other forum members it can be made a whole lot easier!

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Nice one Northener excellent responses and thanks for mentioning those of us who are diabetic due to pancreas removal – appreciated.
You should have mentioned the diabotics.
I would recommend all with an interest in or relationship to diabetes to pay the forum a visit. I will be leaning heavily on my fellow contributors over the next few months as i get used to the pump i am getting in 2 weeks time

I too have been inspired by the forum to discover I can do things I didn’t think were possible for T1s. We don’t necessarily all agree with one another but there is great support and no nastiness allowed. Definitely a brilliant resource!

A great resource and much needed with so many cuts in the NHS. Diabetics are getting a raw deal in some places and anything that helps to get to grips with their condition can only be a good thing.

I cannot thank the forum enough. I have muddled along with my diabetes, type2, for ten years and have managed it well. It is so nice to talk to to other diabetics because they “get it”. Your Health Care Team may be good, bad or indifferent but they do not live with it 24/7. We need that bond with people who experience the day to day problems. We are not experts but we try and help or suggest options available.

The forum is friendly with some great posters and personal stories that we can all empathise with. Everyone gets a warm welcome, an answer to their queries, a pat on the back if needed and general advice about all manner of personal problems. I went through a personal crisis, not diabetes related and was amazed at the kindness of strangers.

I can only describe the forum as a family, there for you in times of triumph, despair, loneliness, happiness, confusion and all things diabetes related.

Well done to Alan and his team for providing such a valuable resource.