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Meeting other adults diagnosed with T1

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SB2015

SB2015

Well-Known Member
Relationship to Diabetes
Type 1
Over the years since my diagnosis I have regularly asked DUK what provision they have for adults that are diagnosed with T1. When I was diagnosed at 53 I feel very isolated and had no access to others in the same situation. Diabetes UK provided weekends for children and their families, as well as one day events for adults up to the age of 30. Older than that you were on your own.

Twelve years in I still remember that isolation, and have continued to campaign on this. This week I had a very useful conversation with Odette in the T1 events team explaining the reasons for the age limit, but also with suggestions for other support, so here is the last.

Diabetes Support Forum
An obvious choice which was not available when I started out. Glad to have it now and keen to make sure that people are aware of it. Good to see the recent appointment of @everydayupsanddowns and the continuation of this.

JDRF Discovery Days
https://jdrf.org.uk/information-support/newly-diagnosed/type-1-diabetes-discovery-days/
I had assumed hat JDRF was focused on children, but now know that their title is based in the historic name for T1 Juvenile Diabetes.

Volunteer in a T1 Family weekend
I have added this one in, and I know that it is not for everyone, but the chance to be with so many others who also have T1 is amazing. They are also a good source of tech advice. I was definitely one of the oldest but it definitely didn’t matter. (They were happy to help me up off the floor after a game!)

Diabetes UK Local Group
https://bristol-diabetes-support-network.diabetesukgroup.org/about/
I tried this locally but found that it was all focused on T2, but I know that in some cities there are active T1 groups

TAD talks
http://talkingaboutdiabetes.co.uk/tad-talk-events/
I haven’t tried these as yet but sounds worth looking at.

Twitter GBDOC
https://twitter.com/thegbdoc?lang=en
This is when I come up against my tendency towards ‘legacy equipment’
I suspect that there is a whole world I am not tapping into as I don’t use Twitter, Facebook, ..

Diabetes UK Insider:
https://www.diabetes.org.uk/diabetes-uk-professional-conference/insider-event
I was sorry to miss this last year, and this seems like an excellent opportunity. The next one is on 21 March in Glasgow. I spoke to others who attended the one last year and they said it was excellent.

Diabetes UK Type 1 and tech
Another successful event last year.
I imagine it’ll be in Wales in November

Plus loads of stuff in Facebook and Twitter if only I was wanting to use those.

So in conclusion, loads of stuff available that I simply did not know about and had not been directed to before. Thanks Odette.
 
Last edited:
Very interesting and useful, thank you for posting this information🙂
 
Yes. Great post.
I would not be alive today without this forum. Saved my life and soul more times than I can count. So important to know there is help out there, from people who know it and get it, the real experts.
Will be bookmarking this. Especially the Tedtalks
 
Thanks very much for this useful list.
I also couldn't find much help outside of the medics when I was first diagnosed 8 years ago, and felt very alone and confused.
I was questioning what the medics were saying, but could only find some alternative views in books, and it would have been so good then to find the support that the forum now provides.
There is much more available now, but I would still like to see more happening for Type 2s
I am thinking about going to the Glasgow event, and trying to persuade my husband that a weekend break in Glasgow would be good - still working on that one though!
 
Being newly diagnose (September) at the age of 49 I found the only support I got was from forums etc. It has been a pretty scary and lonely period, though in all honesty it has gone pretty well.

It has been all pretty much all self learning with the support from this forum and watching various YouTube videos. That doesn’t feel like the way it should be

it didn’t help after numerous chasing of the diabetes nurses to find out that they had forgot to register me. So perhaps my experience would have been different if they had registered me, though some how I doubt that
 
Jon-Manchester said:
Being newly diagnose (September) at the age of 49 I found the only support I got was from forums etc. It has been a pretty scary and lonely period, though in all honesty it has gone pretty well.

It has been all pretty much all self learning with the support from this forum and watching various YouTube videos. That doesn’t feel like the way it should be

it didn’t help after numerous chasing of the diabetes nurses to find out that they had forgot to register me. So perhaps my experience would have been different if they had registered me, though some how I doubt that
Click to expand...
Sorry that you had some difficulties at the start, but glad that you have found help on here Jon.

So much of D depends on self management, but it is good to get help from others who are further down the line. At the start I remember a DSN saying “just keep your levels on target”. It was a while before I realised that expecting myself to do that 100% of the time was an impossible task.

Just keep asking questions of people on here, whatever the question is.
 
There's also a brand new group for T1s starting in Worcester tonight (I think). I wont be there, but I do know the person organising it. They aren't o nthis forum, so if anyone would like to go, please message me.
 
Over the years there have been three local support groups within easy striking distance. These were for both Type I and II. Two folded due to lack of attendance despite best efforts not helped by GPs and clinics not telling the newly diagnosed about them. The third is still going but had moved to an afternoon slot with less educational chats and more a "tea, biscuits and a chat" culture. I honestly cannot be bothered!
 
I understand that comment - however it is immensely difficult getting medical speakers to talk to meetings in the evening. They've had enough at the end of the afternoon.
 
Just read my original post and edited to correct a few bits.
From reading responses I think people got the gist of the limitations that existed.

Good to hear about other events/ groups/ online things that are available now.

I think that the web provides very useful links, as do other things like Facebook and Twitter.
Personally I still like meeting people face to face, so thoroughly enjoy the SW forum meet ups, and it is good to read of others that take place. Nothing to stop anyone setting one up in their own locality.
 
... and then there is the Integrated Diabetes Service newsletter thingy.
It is from the USA but always contains useful tips, a quiz, comparisons, ...
https://preview.mailerlite.com/l4n8z9/1339338479263290607/u3n7/
I have registered and it just arrives in my email.
It is run by the person who wrote Think Like a Pancreas.
 
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