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Non-medical Support Provision

J

JimmyBlue

Well-Known Member
Relationship to Diabetes
Type 2
Hi all,

I had a quick search in the forums and could not find anything on this subject, but then again maybe I just missed it.

The forum is a great place to read about how people are making changes to manage or improve the management of their diabetes but I also see quite a few messages that reference supporting partners or friends, issues with mental health and even on thread on the issue of stigma and it caused me to stop and think about what support is available for diabetics outside of the medical support provided by clinics, GP surgeries and specialists.

From my own personal perspective I feel very fortunate that my wife and to an extent my adult daughters have been very supportive around my diabetes and additionally, as I am open about having diabetes, others in both my own and my wife's family are also good to chat with about my health and my occasional frustrations with the diabetes nurse. I also see the forum as a great support environment, I am however, interested in how others find support to help them in dealing with this condition, particularly those who are on their own.

I did look to see if there was something like a diabetes group in the area where I live and while there is certainly something operated under the auspices of Diabetes UK although there is no indication of when the actual meeting are held, just minutes of the last meeting (for my local group this was November last year). Other than that there is nothing else other than support for more complex or difficult diabetes conditions from both the council and NHS. I am going to contact the lead for the local group to see if they are active as I think actually meeting face to face with people with similar circumstance is a great idea.

Do other people sometimes wish that there was a group or organisation out there that could provide some local face to face support or are people more comfortable with the the semi-anonymous support they get from the forum? Do people on their own feel that some kind of volunteer based face to face support would be beneficial? Do people worry that they don't have access to non-medical related support and the impact that has on them in terms of encouraging and supporting them in their lifestyle changes or the provision of positive feedback when things are going well or bad?
 
Personally, I'm happy getting my non-medical support from the forum. I think any face to face contact could be done very briefly, then further time would be unnecessary from a D support perspective. It's convenient getting ideas, opinions and perhaps recommendations in writing, then having time to consider the merits or just pitch in and adopt the ideas. But time is needed to find out if the idea worked "for me". So confirmation is a slow burner ....

I don't crave face to face support. I'm happy to meet other people, but not with a priority goal of "talking about diabetes".
 
@JimmyBlue

Good question. I think this forum is as good as it comes. Better in fact.

You have done very well so far. An important next step will be to maintain your new HbA1c at a normal level in the years to come. I was very apprehensive about that. Members who are sustaining their remission reassured me when I asked simple questions.

I think much more could be done to 'pool collective wisdom' but that is another story for another day.
 
I am very happy with the forum. As it allows a certain amount of anonymity people can choose how much information to share.
I do have a couple of friends that are also type 2 but we have other interests in common and I only became aware they had diabetes some months after meeting them. We do sometimes chat about our diabetes but tbf not that often, usually when it has impacted us in some way.
For some people face to face meetings may help. There are no Diabetes UK groups in my area as far as I know.
 
JimmyBlue said:
I did look to see if there was something like a diabetes group in the area where I live and while there is certainly something operated under the auspices of Diabetes UK although there is no indication of when the actual meeting are held, just minutes of the last meeting (for my local group this was November last year). Other than that there is nothing else other than support for more complex or difficult diabetes conditions from both the council and NHS. I am going to contact the lead for the local group to see if they are active as I think actually meeting face to face with people with similar circumstance is a great idea.
Click to expand...

We have had occasional face-to-face forum meets in the past. They sort of got kyboshed by the pandemic, but hopefully if there’s an appetite and folks in different parts of the country fancy organising them they could happen again.

For more regular meetings / local groups, Diabetes UK has amazing volunteers that run groups all over the country where people can meet regularly face-to-face.

I’m not sure what part of the country you live in @JimmyBlue but your regional Diabetes UK office will have contact details for those who run the group near you and could hopefully put you in touch with them?

In your area

To find out more about Diabetes UK activities in your local area, please follow the links below. Northern Ireland Scotland Wales
www.diabetes.org.uk www.diabetes.org.uk
 
Going to be perfectly honest here but just happy to get support from diabetes clinic then just on things myself, rarely mention my diabetes to family & they rarely mention it to me, just don't like fuss or being centre of attention so I'm a kinda private person for sure.

Can certainly see why peer support in meet ups & local groups would be useful, so those that use them it's great having that connection to hand.
 
nonethewiser said:
Going to be perfectly honest here but just happy to get support from diabetes clinic then just on things myself, rarely mention my diabetes to family & they rarely mention it to me, just don't like fuss or being centre of attention so I'm a kinda private person for sure.

Can certainly see why peer support in meet ups & local groups would be useful, so those that use them it's great having that connection to hand.
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I also quite happily cracked on with life without ever knowingly talking to another diabetic for more than 30 years and only joined this forum to get some ideas about how to deal with long endurance exercise (to find that there aren't many people doing it, which is fair enough, though I have learned and/or had clarified some separate things about diabetes management which were lurking in the back of my mind but had perhaps not completely crystallised).

As I said above I enjoyed our f2f catch-up socially, and if there were e.g. talks on research available f2f I think that would be of value and an interesting way for people to get together and share ideas (though I can see that online would also work, but I do like talking to people as you can tell from my very long posts! 😉).

I was quite happy without any external input (aside from yearly clinic chats and support from friends and family - giving me food and spotting if I was going low), but in hindsight I would have benefitted from learning about what other people do/how they manage their lives much earlier, even if I didn't and still don't require any sort of "support" per-se.
 
To all those who have answered so far, thank you. It is quite reassuring to see that many of you, like me find the forums a supportive place to discuss and raise questions about diabetes and to have the odd rant. I also like the relative anonymity that comes with it. Although that said I am thinking about attending a meeting of the Milton Keynes Diabetes UK group to see what it is like. Looking at their November meeting, they had some people come along to give a talk on Diabetic Retinopathy which to be honest I know very little about (my check was clear so didn't bother researching it). So I can see on some level that face to face may have benefits if for no other reason someone is looking to ensure that diabetes sufferers are getting information about all aspects of the illness from professionals which may improve the people getting treatment earlier.

@JITR your comment is also very kind and is an example of the non-medical support that I was thinking of. Positive feedback is really important to people when they are trying to do difficult things. Whether it is work related, sport or in this instance trying to get a medical condition under control. The forum is excellent at this as you have so happily proved, and my family and relatives are similarly supportive (my wife's niece is a GP and was very impressed with my latest HbA1c). But for some people particularly those on their own I do wonder where they get their positive feedback from? It is feasible that they may not need it however, most people are do and again I wonder whether the external feedback from some form of face to face group might be beneficial. The evidence for this I think comes from addiction support groups where there is a regular level of positive support for the achievements of members.

I would be interested to see comments from some of the forum members who have expressed concerns about their ability to continue to be motivated or struggle with feelings of depression. It would be nice to be able to find ways to support such individuals better. Maybe the concept of a virtual family might help? This is certainly a function that the forum provides to an extent today.
 
JimmyBlue said:
But for some people particularly those on their own I do wonder where they get their positive feedback from?
Click to expand...

A couple of thoughts:
1. Join local groups (not necessarily diabetes related). There are an amazing number listed in the vilage magazine, and who knows how many more not listed. Maybe ask the people in the GP practice for suggestions.
2. Volunteer. BBC Radio 4 had a programme the other day about a Bangladeshi who was a desperate victim of modern slavery. He eventually took up volunteering 3 hours a week at local charity. That kept him going until he saw an opportunity to escape the clutches of the restaurant owner. Carried on volunteering and became a 'meeter and greeter' at Heathrow for the 2012 Olympics. Still waiting for his resident's permit 13 years on.
 
JimmyBlue said:
But for some people particularly those on their own I do wonder where they get their positive feedback from? It is feasible that they may not need it however, most people are do and again I wonder whether the external feedback from some form of face to face group might be beneficial.
Click to expand...
What sort of positive feedback are we talking about? Perhaps this is different between T1 and T2. I always had very low HbA1c as a child and young adult, I didn't need any feedback, I seemed to be doing ok. I guess for those having more troubles perhaps positive feedback would be helpful, though I'd have thought being able to see what other people do so they can optimise what they are doing might be more useful (though perhaps that's a personality thing).

Even as an adult with less good (but still decent - 50s) HbA1c's I don't need feedback from anyone, I'm not doing it for anyone else but rather for myself.

So I don't want feedback but I am interested to hear what other people do/how they manage their diabetes because I might learn something useful, and there's also the other facet which is wanting to help people by sharing experience and showing that this isn't a debilitating disease and that it shouldn't get in the way of doing (pretty much) whatever you want.
 
I think this is another way that we are all different.
I am not sure whether the difference is anything to do with types of diabetes as much as types of personalities.
For example, I am certainly verging towards the introvert so "hiding behind" an online forum and doing my own investigations suits me best. But I understand others prefer a face to face interaction with group encouragement.
I guess it is a bit like weight loss groups - the idea of a weekly Weight Watchers meet up would fill me with dread but it is a format that works brilliantly for many people.
 
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