Let The Storm Rage On

...the cold never bothered me anyway? Well, tis (almost) the season for such movies. You might have realised from the image above that this isn't a blog post about Frozen or Christmas  Instead, I'd like to talk about everyone's favourite subject; social media. Gah! I know quite a lot of you are now going to close this window, unfollow me, throw away your phone and report me to the police. I might deserve some of that! I mean, have you READ my tweets?! Jeez!

For the handful of you who remain, let's get into it. Sometimes, I "do a lot of socials" and not just for myself. From time to time, I work for others (volunteered and paid roles) alongside my own blathering. It's cool, I like the interactions and social media has opened a world of experiences for me. It's helped my health, too. My T1D is unrecognisable from what it used to be just 6 or 7 years ago. That's an incredible thing if you really consider it. It also paints the general population in a great light, especially diabetics, as they are the driving force behind my current diabetes management and stable health.

I've thanked the online diabetes community in several blog posts and posts on socials. They truly are a great bunch and if you're new to that world, embrace it and soak up all the info and support that you need. In other posts, I've issued warnings to people to be cautious online. Despite the majority of people having no agenda but to assist others and gain their own support, there will always be a minority who are looking for something else. What are those things? The list is likely long, but you can probably include; using others for profits, career progression, gratification, and self promotion. I've experienced those things and more. Perhaps you have, too. Whilst that's sad, particularly as the diabetes world is focused around health, it's not very surprising. This is the Internet, of course!

Part of the online diabetes community is GBDoc. You're probably aware of it if you stumbled upon this post via a link on one of my socials. I've had a lot of involvement in that community and, again, it's been tremendous. When I began tweeting about diabetes, I was very determined to not involve myself with any community or organisation. That probably lasted about a month! and after a year or so, I was asked to be a volunteer along with several others. Volunteers have come and gone in the last 5 years. They had their reasons and their departures didn't affect me. We remained friends, largely, and some are still kicking around on socials today.

And now it's my turn to depart.

I've simply lost the motivation to continue to freely give my time to GBDoc. There are reasons for that and there are absolutely a select group of people who are behind those reasons. To detail each would result in a very long blog post and it would probably create an online inferno. My own personal attacks have included accusations of stigmatising others, subversive posts that target others, discriminating against others who are not British, not fact-checking things I retweet (because I'm CNN, obviously)... and I'm going to stop there because even as I type those things, and even after some time has passed, I feel affected by those accusations and the shocking levels of entitlement to tell me how I run my own personal account. I'm not perfect. Indeed, there have been times when I've corrected or removed something I knew to be wrong or even something that could be misinterpreted. Over the years, I've listened to others and made apologies for my own errors and, unnecessarily, the misinterpretations of others. Those instances were on Twitter (now X) which has never really been the easiest place to read tone from or gain much from in the way of great detail - unless you have a verified account and you love writing essays, of course!

I'm not looking for sympathy. However, I feel sorry for my friend, Jules. She's well known for living with some serious conditions which are exacerbated by stress. To listen to her breaking and tearful about the whole saga was very tough. The non-apology and the carry-on-regardless nature of those involved was bewildering. "Bewildering" was the best I could muster after deleting various expletives. Of course, you should form your own judgements if you wish, but from someone "on the inside" I know the hurtful remarks made about GBDoc volunteers (managed by Jules) were so far removed from reality. I hope that she'll come back one day. I'm sure the community will continue to thrive in whatever guise. 

There is much more I could add to this post. I may follow up at a later date. There will, of course, be more blog posts on other subjects in the days, weeks and months to come. If you're from GBDoc, it's been lovely to volunteer for you since 2018. Stay well. 

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The Power Of Sharing

In the world of diabetes management, every day brings unique challenges. Yet, through the power of advocacy and awareness, individuals with diabetes are finding the strength to face these challenges head-on. This blog post revolves around a compelling story shared to me by an online diabetes peer, which beautifully encapsulates the impact of diabetes advocacy and the resilience of those living with the condition.

Our peer shared a moment from their life that unfolded during a seminar. It was a day like any other, but their insulin pump had other plans. It malfunctioned, resulting in high glucose levels—a situation that can be unsettling for anyone. Instead of feeling embarrassed, this individual demonstrated remarkable composure. They calmly injected insulin and replaced their pump set right there in the room, without leaving or excusing themselves. In their own words, they did it "like it's a normal thing...which it is apart from injecting."

Here is their message, shared with permission: 

This story carries a profound message, not just for people with diabetes but for everyone:

The Power of Advocacy: The online diabetes community, along with dedicated advocates, has played a pivotal role in raising awareness about diabetes. Their efforts have contributed to a more informed and understanding society, allowing individuals like our peer to feel supported and empowered.

Breaking Down Stigmas: Our peer's ability to manage their diabetes openly and confidently challenges the stigmas surrounding the condition. It exemplifies that dealing with diabetes, even in unconventional situations, should be normalised and accepted.

Self-Empowerment: This story is a testament to the resilience and self-empowerment that individuals with diabetes can cultivate. When people understand that diabetes is a part of life but doesn't define it, they can confidently manage it without feeling the need to hide.

Inspiration to Others: The courage displayed by our peer serves as an inspiration to me and I hope others in the diabetes community. It shows that unpredictable moments can be met with grace and that diabetes doesn't have to hold anyone back.

The Importance of Preparedness: While managing diabetes is a day-to-day reality, moments like the one our peer experienced highlight the importance of preparedness. Knowing how to handle such situations and sharing this knowledge can benefit the entire community.

This story is a testament to the transformative power of diabetes advocacy and the resilience of those living with the condition. Through advocacy, we can break down stigmas, inspire self-empowerment, and encourage a sense of normalcy in managing diabetes. Our peer's experience during that seminar is proof that, with the right support and awareness, individuals with diabetes can confidently navigate even the most unexpected moments with confidence, ensuring that diabetes doesn't define them, but rather, becomes just another part of their remarkable lives. 

I talk about my diabetes a lot and I do that simply to share my experiences. Remarkably, that simple act can have a hugely positive impact on others. I strongly encourage you, reader, to share your own experiences about diabetes. 

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The Importance of Diabetes Community

It has been around six years since I took a deep breath and pressed the record button on the video app of my phone. I blundered through an introduction video, deleted it, wrote a script, blundered through that and deleted it. Eventually, I decided on something that was a few minutes long and sent it to my YouTube channel. Of course, nothing happened. It did get a few views! Really... just a few, but that was enough to inspire me to make more and seek out others who live with Type 1 Diabetes. I'm so very glad that I did.

The last six years have been eye opening, jaw dropping, heart wrenching, gut churning, annoying and, most importantly, absolutely wonderful. The good, the bad and the ugly have all visited my social media accounts. The vast majority of the visits have been good and that's why I'm writing this new blog post. The good has had such a profound effect upon my diabetes, my outlook, my social life and my confidence. The good comes in the form of community.

I think it's only fair that I start with GBDoc. You probably knew that was coming! But, what a remarkable community of people and such longevity! GBDoc has been around for far longer than I have in diabetes social media, over a decade apparently. It has had many guises, many volunteers, a few leaders, thousands of members, several platforms, a website, controversy, love, hate and friendship. Sometimes, it feels like Eastenders with boluses - only the acting is better and the story lines are more interesting. Drama aside, the support and information from GBDoc has been incredible. I wonder where I might be in my T1D journey without this community? Where might you be? I suspect much worse off, maybe less knowledgeable, struggling for tech access, more isolated...

...GBDoc isn't the only diabetes community. Different countries have their own communities and that makes perfect sense as healthcare, access to meds and tech, societal differences, etc can differ hugely between nations. Some communities try to cover a global "scene" and that's cool too. From other people, other countries, other values, other uses of language, we can learn a great deal alongside (for me at least) helping to recognise privilege.

Communities are very fluid places. As time passes, people come and go perhaps because they have gained the help and information they need, perhaps they didn't get what they expected, maybe they died! Many reasons can cause the disappearance of an individual from an online community just as many reasons can bring about new faces. 

In my six years of community engagement I have gained so many friends - I really couldn't list them all without forgetting a few. Some have been friends for almost the entire six years and I hope they remain so for the rest of our days. Some have drifted away, a few decided to not be friends at all after a while. That seems like very normal human behaviour and I'm quite accepting of it. Community makes friendship easier to develop and blossom. If you're feeling isolated and lonely with your diabetes then the community could be the answer.

 Away from being bestie mates with lots of new people, your diabetes could benefit hugely from community engagement. Hybrid Closed Loop (not an artificial pancreas) looks likely to be a hot topic for the years ahead in the UK. Yet, most diabetics are not using that technology right now. That means a lot of learning and understanding is on the horizon for people who may want to try HCL (criteria dependant, naturally). The same was true of Libre, CGMs, Smart Pens and Insulin Pumps - less complex than HCL, perhaps, but the usage experiences of peers have proved invaluable to many.

So, you've got new friends and new tech. Now what? Maybe you struggle with the mental burden of having diabetes? Maybe you've heard of talking therapy? That's exactly what a community can offer. Put your grown up pants on and start talking, tweeting, posting, whatever! You'll be surprised at who understands your issues and reaches out to offer an ear. And it helps! To not feel alone in your struggles can ease your burden even if no immediate solution is found. What is the old saying about a problem shared is a problem halved?

Do you need more? Well, community doesn't always mean serious. I've had some hugely fun days out with my friends from GBDoc, we play quizzes, fantasy football and cruel but funny practical jokes on each other! Other skills are shared via a Stitch Club. Books are read at the same time, films and TV shows via watch-a-longs, hobbies and interests shared and enhanced because of new diabetic friends who just enjoy the same things. Maybe you enjoy gaming? gotcha! Art? gotcha! The list of interests is huge and you'll likely find someone who enjoys the things that you do with no relevance to diabetes apart from being in the wonky pancreas gang.

By the way, serious can also be lovely. Some friendships have developed into more and dating, even marriage, has happened. 

If life dealt you a bad hand with diabetes, you can still win the pot if you play your cards right. I'm turning into Bruce Forsyth. Good blog, good blog. 

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The Six Principles of Good Peer Support - My Thoughts

World Diabetes Day saw an eagerly awaited NHS document on peer support published. 'The Six Principles of Good Peer Support for People Living With Type 1 Diabetes' hit the NHS website and various socials. Many congratulatory responses were passed around, including my own.

I've written and spoken about peer support, both formally and informally, many times and I make no apologies for that. It might just be the key element in my own T1D care - the reasons for that? I've detailed so many times that I won't bother to do so again in this blog post, you likely already know them very well and I don't want to lose your attention in paragraph two. 

Let's take a quick look at the six principles which the NHS and helpers believe to be part of good peer support if you have T1D. I'll throw in my comments in Italics and bold. 

1. Driven by the shared experiences of people living with Type 1 Diabetes

Why is this important?

The value of good peer support comes from people sharing their experiences, frustrations and successes with others who have been through similar things themselves.

Straight in there with shared experiences. Great stuff. Many of us love to share but also to learn from the experiences of others. I think it's important to remember that, despite T1D, we are all very different in many ways. A review of a CGM or a pump can be completely different from person to person, a visit to a certain clinic, reactions to certain meds, diets, exercise. It's very obvious that there is little in the way of black and white when it comes to T1D. Taking on board the words of others and their experiences can absolutely prepare a person, give them a heads up, etc but don't always take a shared experience as gospel.

What does this mean for:

People with Type 1 diabetes accessing and giving group support as a group member?

People can share real-world examples of how living with Type 1 diabetes affects them. They can find reassurance and support from other people in the group who know what it’s like to live with the condition.

Absolutely. How often do you read "Hard relate" when somebody shares an experience? Very often, for me. 

People giving Type 1 diabetes peer support as a group leader/facilitator?

Facilitators being able to share their own experiences with confidence will help and encourage others to do the same, whilst being mindful that each person’s own experience is unique.

Mindful indeed. I'm pleased that this was added in Principle 1. Peer support cannot be "Do it this way because it works for me". Well done to whoever pushed that in.

Clinicians and service providers?

Referring people to a group of ‘experts by experience’ will provide a vital avenue for people to feel confident and supported in living with Type 1 diabetes.

I'm not comfortable with 'experts'. We might be! about our own T1D but about living with T1D in general? By all means, refer to yourself as an expert if you're happy with that. I think the word might also set high expectations from the newly diagnosed or those looking for a specific type of support. Peer support is largely voluntary and it might be very respectful to refer to us volunteers as experts but, I worry about expectations and disappointment. Clinicians could refer people to 'Experienced people living with T1D' and if specific support is needed? '...T1D and a related issue'. I run a T1D group for men, that might look like '...T1D and men's health'

2. Reciprocal, with opportunities for people to ‘give and get’, as well as to learn from one another

Why is this important?

Reciprocal support recognises the mutual benefit of giving and receiving support

What does this mean for:

People with Type 1 diabetes accessing and giving group support as a group member?

All experiences of living with Type 1 diabetes are valid and no one person is more ‘expert’ than another. It would be helpful for group members to understand the difference between information and advice.

Fabulous. Nobody is more important than another in peer support circles. Ugh "expert". No one person's experiences are more valid than another? Great, RE: info and advice. Do the signposting thing and the "My experience of that is..." thing. 

People giving Type 1 diabetes peer support as a group leader/facilitator?

The reciprocity of peer support emphasises the importance of creating a flexible space for people to share their experiences and from people to ‘give and get’ from one another. It is recommended that Facilitators have confidence in leading groups, including the ability to manage group dynamics and potentially difficult discussions.

Absolutely right. The GBDoc Twitter accounts often throw up issues and decision making which sometimes needs much discussion. To lead or facilitate requires a skill set that some don't possess. A track record is vital to good (and safe) peer support groups. 

Clinicians and service providers?

Confidence that people are being referred to an evidence-based, overarching experience that gives meaning and purpose.

A good track record? Cool. 

3. Safe and encouraging, enabling people to share their experiences free from any judgement

Why is this important?

Peer support should provide people with a safe, non-judgmental environment to be able to talk about their experiences of Type 1 diabetes.

What does this mean for:

People with Type 1 diabetes accessing and giving group support as a group member?

In listening to others’ experiences and building trust and confidence in the peer support group, people should feel safe to share their own experience of living with Type 1 diabetes. All group members may contribute to and agree common ground rules and boundaries (for example confidentiality) that will enable this trust to be built.

Essential and well done to whoever pushed this through. 

People giving Type 1 diabetes peer support as a group leader/facilitator?

Peer supporters should create the right conditions for a safe, nurturing, and welcoming environment, enabling and encouraging people living with Type 1 diabetes to share their own experiences and to learn from others. Group leaders might want to be aware of the benefit of establishing ground rules and/or a group agreement.

Absolutely right. In my own groups, we vet private group members before acceptance. In the open groups such as the GBDoc Twitter accounts, volunteers will discuss decisions to keep people safe and share information about anything which might put someone or a group of people at risk. 

Clinicians and service providers?

Confidence in referring people with Type 1 diabetes to a safe and supportive peer support group.

A good track record of protecting peers? Cool! 

4. Accessible and inclusive, available to everyone with Type 1 diabetes

Why is this important?

Everyone with Type 1 diabetes should have equal access to peer support.

What does this mean for:

People with Type 1 diabetes accessing and giving group support as a group member?

People can feel confident that they can access their choice of peer support group.

People giving Type 1 diabetes peer support as a group leader/facilitator?

Clear thought should be given to what would make groups accessible and inclusive e.g. the appropriate language for health literature, physical accessibility and/or cultural or religious considerations.

Barriers that might prevent people from accessing support should be mitigated wherever possible.

It is unlikely that any one group or avenue of support will be able to meet the needs of large groups of people, so knowing about and being able to signpost alternative avenues of support is useful.

I agree about unlikely but it is massively important to TRY. GBDoc has an Accessibility Pledge to cover very basic things in terms of accessibility such as ALT text (image descriptions) and disability friendly venues for get togethers. It is incredible to still see that many accounts of communities and their leaders/facilitators do not consider this. It has taken a lot of work from me to get the major diabetes charities on board with ALT text. I don't have high hopes for some volunteer led communities which offer peer support, sadly. That said, again, well done to whoever pushed through this very important aspect.

Clinicians and service providers?

Confidence in referring people to an accessible and inclusive peer support group.

Please check this before referring. Imagine referring somebody living with visual impairments to an account which does not ALT text their images? 

4. Person-centred, taking account of each person’s own strengths, values, needs and feelings

Why is this important?

Peer support should be focused on each person, their own unique characteristics, and what matters to them.

What does this mean for:

People with Type 1 diabetes accessing and giving group support as a group member?

People with Type 1 diabetes are seen as a whole person in the context of their own lives and experiences. Good peer support can help people to understand where their existing strengths and assets lie and how they can draw on these to help them manage their day to day lives.

People giving Type 1 diabetes peer support as a group leader/facilitator?

Good listening skills are implicit in supporting someone to identify their own skills and resources, as well as what is available to them in the community. Good peer support looks outside the peer support group itself to signpost effectively to other services, which meet the needs of each person in the group.

Perfect. Listen to your peers and the language they use, I guess? Send them to the right resources or another group if need be.

Clinicians and service providers?

Confidence that people are being supported to develop their knowledge, skills and confidence to support their Type 1 Diabetes.

5. Complementary, working hand in hand with health and social care providers

Why is this important?

Good peer support should run alongside existing health and social care provision, enabling holistic provision of services to suit each individual person’s needs.

What does this mean for:

People with Type 1 diabetes accessing and giving group support as a group member?

Good peer support is one component in a complete toolkit of care. It provides options, opportunities, and choice for people to live well with Type 1 diabetes.

People giving Type 1 diabetes peer support as a group leader/facilitator?

Working in a complementary way means that people will be encouraged to access a range of services that best meet their needs. It recognises that peer support is only one aspect of Type 1 diabetes management.

Absolutely perfect.

Clinicians and service providers?

Confidence in referring to a peer support group to complement the service that they are providing.

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To read the full document then tap/click here

I'm very happy with this document, despite there being two point 4s and zero point 6 (eck!). I think it covers all the good basics and my concerns are few and very minor. I write that as a Type 1 Diabetic and as a facilitator of many peer support groups. The task now? I think to put together a well vetted database of groups and individuals which NHSE can call upon or offer to people when needed. How to vet? The usual record checks but consult those who have been neck-deep in peer support for years (good track record) within the United Kingdom. There is a safety disclaimer on the document and I think that's very wise Without any vetting of referred groups and individuals there needs to be a "you do this at your own risk" agreement in place.

 

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