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.

 

Thank you so much for reading this blog. I do appreciate your visit and your support. As you might know, I LOVE COFFEE! So I've teamed up with a thing called Buy Me A Coffee. If you enjoy my content and appreciate the time it takes to create such things then you can buy me a coffee! If you leave your Twitter @ name when you buy me a coffee, I will personally thank you. If you'd rather be anonymous then that's totally cool. Thanks for the caffeine!

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Peers

I have many photos of my peers and those guys are a very photogenic bunch! and I consider them to be my friends, too. To use one of those photos might mean neglecting friends from other photos. Anyway! That's the long explanation of why I've chosen a photo from FRIENDS the TV show rather than one of my own. My diabetes friends are my peers, there is a very strong bond between many of us. I'll be there for yoooouuuu!

I took part in the Diabetes Chat 24hr chat bonanza! yesterday. I had an hour to talk to Jules from Enough Now DOC and GBDoc to talk about safety within the diabetes community, peer support and a little about mental health. I think the conversation flowed well, from hearing about unsavoury incidents and characters to how to stay safe online and in the general community, then how peer support has impacted and benefited many across the GBDoc community. Meeting and communicating with members of the community has certainly lifted my mental health when it comes to living with T1D and I think I'm right in saying that others have had a similar experience.

I have lost count of the number of people who I've met at the events & get togethers which I've attended. I mentioned in the Diabetes Chat; I've yet to have a poor experience from meeting my peers. Each time, there has been a new story, new information or a new face to meet. Sometimes, I've been able to directly help somebody. From the accessing of the tech that they need to some gentle words of encouragement and everything in between. I've been on the opposite side of that coin, too! Several diabetes tech gadgets have found their way into my lap, a direct result of meeting my peers. Those gadgets have undoubtedly helped me to maintain or improve aspects of my T1D management. 

Without peers, where would my T1D be? I suspect that I'd be using a Libre but, likely still injecting 8 to 10 times per day instead of using a pump (soon to be replaced with a brand new NHS funded one) and instead of using a CGM - a direct result of me tweeting about T1D and being recognised as somebody worthy of being gifted a device. Without peers, my burden would be much more than it is today. Diabetes aside, my private life would be far less rich as well. I have a WhatsApp which is heaving with messages and group messages from friends. No longer are they simply "peers" and no longer is the conversation driven by our lack of beta cells.

The Diabetes Chat event was littered with my friends and peers. After I'd had my hour with Jules, I just listened when time allowed. It was brilliant to see the names of online friends, joining in and telling their stories and offering their opinions. I was very pleased to see Alex take the hot seat to present the GBDoc Quiz and equally pleased that Mo agreed to lead the Tweetchat segment to assist Jules. Alex and Mo are frequent names in the Twitter GBDoc community but I don't remember hearing them speak very often, aside from the Zoom quizzes and when I interviewed Alex for a Dad Chats to... They're lovely people and, if they read this, I'd like to encourage both to push for more opportunities. The same goes for others within the diabetes community - You're just as important as the frequently heard voices, the voices with a social media presence and the voices who work within diabetes. Personally, I enjoy listening to the infrequently heard voice rather than a repeated narrative. 

Monday (tomorrow, after this blog is published) sees the publication of a new NHS document. "The Six Principles of Peer Support" appears to have been a long time in the 

coming. There is much chatter in my circles about what to expect. I'm certainly very interested in what the NHS will come up with following private discussions with a few who live with T1D. There is absolutely many positives to peer support and my hopes are high that the NHS will only enhance what is already there. 

Monday is also World Diabetes Day. Perhaps you'll mark the day, perhaps you won't. Your diabetes, your rules. Personally, I'm going to the pub for an afternoon with my friends. It just so happens they have diabetes, too!

Thank you so much for reading this blog. I do appreciate your visit and your support. As you might know, I LOVE COFFEE! So I've teamed up with a thing called Buy Me A Coffee. If you enjoy my content and appreciate the time it takes to create such things then you can buy me a coffee! If you leave your Twitter @ name when you buy me a coffee, I will personally thank you. If you'd rather be anonymous then that's totally cool. Thanks for the caffeine!

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Charles Bonnet Syndrome

What is Charles Bonnet Syndrome? and why the photo of Abraham Lincoln? I'm glad that you asked! because that's what today's blog post is about.

I've been talking about eyes and complications on various platforms, lately, following the stopping of my long term eye medications. You might already know the deal with me; eye complications from T1D, surgeries, pressure, yadda yadda. You might have read or heard me talking about scotomas, too. However, I've rarely spoken about my experiences of Charles Bonnet Syndrome.

Who on earth is Charles Bonnet? A pretty interesting fellow, by all accounts. You could do some Googling to find out because I'm more interested in the syndrome than the person. Wikipedia says this about the man and the syndrome:

"In 1760 he described a condition now called Charles Bonnet Syndrome,^[7] in which vivid, complex visual hallucinations (fictive visual percepts) occur in psychologically normal people. (He documented it in his 87-year-old grandfather,^[8] who was nearly blind from cataracts in both eyes but perceived men, women, birds, carriages, buildings, tapestries and scaffolding patterns.) Most people affected are elderly with visual impairments, however the phenomenon does not occur only in the elderly or in those with visual impairments; it can also be caused by damage elsewhere in their optic pathway or brain."

Hallucinations?! Yikes! It sounds pretty scary and, to begin with at least, it was. Let's rewind a decade, I'd recently had my first eye surgery and things hadn't improved. My ever decreasing vision was still very poor and I'd resigned myself to a long period, maybe life, of very limited eyesight. It was a dark period for me both mentally and physically. One morning, I woke to find, to my utter bewilderment, Abraham Lincoln walking by the foot of my bed. He looked directly at me and then sort of melted away into the wall. Strange, I thought, I don't remember taking LSD last night. At the same time, I was paralysed by fear. I remember staying in bed for at least 20 minutes trying to piece together what had just happened. Was I really awake? 

The experience dominated my thoughts through the rest of the day. I had convinced myself that I was somehow half the way between waking and sleeping, that my lost eye sight had tricked my brain into being asleep and desperately trying to not worry about dementia or "going mad".

Some time went by, maybe a week or so, before it happened again. No visits from Lincoln, though. That's far too wacky! This time a far more realistic smile from Queen Victoria before she turned her head and vanished. That sparked a bunch of hallucinations which ranged from various Victorian age dressed people to my best friend sitting on my toilet, cheerfully exclaiming "Hello mate!" and disappearing - Although I couldn't hear him say it, it was simply "mouthed" at me.

By now, as you might imagine, I was getting a little worried for my sanity. Weirdly, I had stopped becoming frightened of the hallucinations and felt disappointed when they vanished. Perhaps seeing something clearly again was the reason for the "feel good" and my brain was releasing some kind of chemical.

Of course, I was unaware that I was experiencing Charles Bonnet Syndrome. It took a visit from a charity worker to explain that what I was going through was completely normal. He even asked the question "Old fashioned things?". I laughed out of relief and started to look forward to my next round of visits from a different century. Sadly, they never returned. It was as if my brain had worked it out and decided I no longer needed to be fed these images. Soon after that, more surgeries and the slow recovery of my sight began. 

Head to the NHS website to read more about this syndrome and the hallucinations in detail. However, they're not dangerous, they are common for anybody of any age following sight loss, they do stop.

As always, I encourage everybody who has diabetes to attend their eye screening appointments. Please go to any follow ups and have any treatments offered to you. 

Thank you so much for reading this blog. I do appreciate your visit and your support. As you might know, I LOVE COFFEE! So I've teamed up with a thing called Buy Me A Coffee. If you enjoy my content and appreciate the time it takes to create such things then you can buy me a coffee! If you leave your Twitter @ name when you buy me a coffee, I will personally thank you. If you'd rather be anonymous then that's totally cool. Thanks for the caffeine!

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Was It The Cinnamon?!

 I've recently fallen into a YouTube "rabbit hole". Having watched someone survive on £1 for an entire day, the same chap then went on to describe his favourite "cheap" meals. One of those meals was a fried banana sandwich - made from bread which he baked himself. It looked pretty good and, because I'm not surviving on £1 per day, I added some sugar and cinnamon to my own fried banana sandwich. It was really good! The cinnamon really brought it to life and I've made the same sandwich several times, since.

Cinnamon! Ah, yes the frequently touted and often mocked cure for diabetes! Of course, it won't cure your diabetes and that's why it's often mocked but it does taste pretty good on various things. Strange, though, that after recently eating a lot more cinnamon (I really like a fried banana sandwich) I've finally been able to stop taking medication which I've been on for around 10 years.

I've had to take eye drops since developing retinopathy and various other eye nasties in 2010. The drops have changed, based on my changing condition, a couple of times. The latest batch began in 2014 and they were prescribed to control pressure and irritation. Very successful they were, too! After my 2014 surgery, I have been stable in the peepers. I thought that was down to a combination of better T1D management and my 2 x 2 eye drops per day. I might be right in regards to the T1D management but it seems that things have changed in the eyes dept.

Earlier this year, my eye surgeon suggested that I should stop taking the drops to "see if anything changes". I did that for around a week in the summer only to find my appointment had been rescheduled. Frustrating! But, during that week, I never noticed any real discomfort in my eye. Encouraged, I tried again before the latest appointment in the world's hottest clinic. 

If you've ever had ocular hypertension then you'll probably know the pain. Just like blood glucose levels, eyes have pressure levels that are given values. A normal value is in the teens, give or take a point or two. In 2014, my eye pressure was 44. I was immediately put on a drip to drop the pressure. I've suffered many pains in my life but eye pressure pain is by far the worst thing that I've ever felt. It lasted for 24 hours before I was able to get the drip into my hand and find relief. 24 hours of agony feels like a very long time, i wouldn't wish that pain on anybody. So, to be asked to stop the eye drops which help to control pressure was certainly a worry.

It's been over two weeks since I stopped the drops, 10 days since leaving the sauna ward, and all is stable in that eye. I don't know if I'll ever need to go back to the drops or if that's the end but I'm delighted. To just wake each day and do the T1D thing without reaching for two bottles and a tissue as well, to go to bed without fumbling around, late at night, for the same... it's less work! and it's less burden. This felt like life in 2009! only with better T1D management and no midlife crisis. 

Was it the cinnamon, though?!  

No. Let's not be silly. I've likely needed to stop the drops for a while. I have stability in both eyes and despite my visual impairment I consider myself to be very lucky and happy with my lot. Blessings counted.

To end this little blog post, I'd like to encourage you to always attend your eye screening appointments and any follow up appointments and to go for any treatments that you might need. I don't want any of you to go through the pain and darkness (physically and mentally) that I went through. If you do attend your appointments then you can reduce the chances of anything nasty happening to your eyes. Some of you will already be living with visual impairments and going through your own personal battles. Please don't ever give up on medical science, new treatments and new technologies. Ask about them, ask FOR them! and share your story without fear. There is no shame in having diabetes related eye complications.

Try the fried banana sandwich, too! :

- 2 slices of white bread, remove crusts

- 1 small sliced banana

- Some sugar (brown works best) and some ground cinnamon

Heat a tablespoon of butter in a pan, place the bread in the pan, add the banana to one slice while the bread browns and sprinkle your cinnamon and sugar on the banana. Flip the banana-less slice of bread on the top and flatten with a spatula. Turn a few times to brown evenly and sprinkle a little more sugar on each side.

You'll need insulin.  

Thank you so much for reading this blog. I do appreciate your visit and your support. As you might know, I LOVE COFFEE! So I've teamed up with a thing called Buy Me A Coffee. If you enjoy my content and appreciate the time it takes to create such things then you can buy me a coffee! If you leave your Twitter @ name when you buy me a coffee, I will personally thank you. If you'd rather be anonymous then that's totally cool. Thanks for the caffeine!

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From The Cradle To The Grave

Have you been reading the shared experiences, maybe offering your own, for Hypo Awareness Week? I have offered up a few things and joined in with a few discussions. It's been heart warming to find solidarity with my peers and learn of the experiences of others. Awareness days, weeks, months or whatever are good things, in my opinion. A little understanding can go a long way for better care in a clinical environment but also at home, work and in a social arena. Keep on sharing and raising awareness of what matters to you.

So, this blog post isn't really about Hypo Awareness Week. The title and photo might have given that away already. It was inspired by the hypo conversations, though. Hypos, a seemingly unavoidable complication of having T1D, rarely spoken of as a "complication", it's frequency - more so for some than others, and the knowledge that your last hypo probably won't be your last ever hypo unless it puts you in the ground. Hypos are probably for life, once you've been diagnosed with T1D, unless technology advances further or £50 million donations find us a cure.

Lots of things are for life, of course; Taxes, corrupt politicians and ITV reality shows to name a few. You'll have your own "for life" baggage, I expect. I certainly do and despite my positive stance over awareness campaigns, I have found this particular one has left me rather melancholy over my own "lifers". 'From the cradle to the grave' refers to my own long term conditions. I almost called this blog "Not a moment" because since my first breath, I have lived with a long term condition. 

Some conditions affect our lives more deeply than others, that could be because of the condition itself or the way we lead our lives or how we're managing the terrible hand that the universe dealt us. My LTCs vary from things that I have no need for support or care over to things such as T1D, where I benefit hugely from good support and care.

My melancholy, my self-pity if you will, will come and go for the rest of my days. It is an infrequent visitor and not something to be concerned about. I feel the storm clouds gathering when I've had a rough period of health or a difficult period in my personal life. In this case, I've had a troublesome couple of weeks with hypos and reduced rest and that's why I've been all very "woe is me" for a day or two. In this time I've been revisiting my "lifers", when they happened, are they related and even considering what might happen in the years to come. Following my last hypo, frustrated, I silently went through my LTC health history:

- Day 1, congenital birth condition

- Year 2, speech condition

- Year 8, diabetes

Then, some breathing space for 25 years. The universe must've been on holiday. Let's crack on...

- Year 33, eye conditions

- Year 37, new eye conditions

- Year 44, shoulder condition

A lot of conditions, hey? and far too much detail to offer in one blog post. Some are related to each other but, because I focus on T1D and anything related to it, I rarely bother to mention anything that's not in the diabetes camp. Oh, sure, they impact on me in many different ways but they don't require any intensive management like T1D does. Oddly, despite the hypos putting me under this dark cloud, T1D is something I feel more "ready for the fight" over. It might be because things could escalate and become very bad with diabetes and the complications that it could bring or it might be the prospect of one day having very little to manage (maybe nothing) in later life when it comes to diabetes. It would be sweet to still be around to experience that.

Reading back through this post, it looks pretty bleak. Sorry, I'm usually a very positive and glass half full person. Life can be incredibly good sometimes! I don't need to think for too long to remember and to count my many blessings. Life is also very short and I firmly believe in enjoying myself as much as I can until I head off into the sunset, leaving behind a trail of horrified nurses. I encourage you to do the same (maybe not the nurses) when you can because, diabetes or not, it turns out you only get to do it once.

Thank you so much for reading this blog. I do appreciate your visit and your support. As you might know, I LOVE COFFEE! So I've teamed up with a thing called Buy Me A Coffee. If you enjoy my content and appreciate the time it takes to create such things then you can buy me a coffee! If you leave your Twitter @ name when you buy me a coffee, I will personally thank you. If you'd rather be anonymous then that's totally cool. Thanks for the caffeine!

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Puppy Low

 ...oh, I guess they'll never know! Donny Osmond, I think. Apologies if you read the last blog or even heard about it on the grapevine. I decided it would be better to not publish that particular post in the interests of the personal safety and causing any distress to the victims of that particular group of people. Instead, a complete change of tone with a photo of Billy. Cute, hey?

True, he is cute and a burning ball of nuclear grade energy. As we know, using our own energy burns up that glucose pretty efficiently in most of us and so "Puppy Low" rather than "Puppy Love" seemed like a good title for this post. Sorry, Donny.

Billy arrived during the final week of my Steptember Challenge. I was already exercising a lot more than usual and chalking up a good number of hypos during the first few weeks of the month, at least. This new, very cute, energy sapper really threw a spanner into the works. Very short but high intensity bursts of exercise were sending my BG tumbling. Alongside a different waking and sleeping pattern, it's made for a difficult week with Type 1 Diabetes. I'm adjusting... kind of.

The experience made me wonder about how others cope with different variables thrown into the mix on a frequent basis. Shift workers certainly sprung to mind but I'm sure there are others with equally or more challenging lives. The solution to many of the challenges and life changes which we experience is, of course, technology. I know, a tweak of the Banting Juice might keep things in order, a couple more finger pricks per day might do the trick too. However, for those wild times, the big life changes, the why does my puppy keep on pooping moments, it seems like tech is the answer.

Some of you may have read about a lady who had waited a year for a pump clinic appointment, only to be refused funding at that appointment because of her sleeping issues. Yeah, I didn't know whether to laugh or cry either. Other stories were shared, including a particularly bizarre refusal tale which the lovely Lesley Jordan (from JDRF UK) shared. Take a look, you'll see that on my time line among all the puppy photos. Technology within diabetes should always be burden reducing for us alongside improving or maintaining our long term outlooks. My switch to a pump has vastly improved my T1D burden and, so far, the numbers all suggest that my long term outlook is in a good place. Where would I be without the pump? Struggling, for sure. I certainly wouldn't be trying to walk 250,000 steps while puppying. It could be easier, too! I could be looping and many more highs and lows would be reduced. I'll be a looper, soon enough, I'm in no real hurry.

So, while my hypos have been on the increase, I'm still in a very good place and a place which I can adjust to with the new arrival in the household. Others aren't so fortunate when it comes to accessing the technology which they need. Here is a link to a Twitter poll about hypos. The results are interesting! However, I know of at least two people who are in the replies with huge hypo numbers. Both are fighting for access to a pump and I have one question; Why?

Why are people with (sorry, my friends, no reflection on you) large numbers of hypos having to fight for access to a pump that will almost certainly reduce those dangerous and debilitating events? Are those numbers not raising large red flags and causing fast-tracks to Pumpville? I'm really at a loss. One hypo is a hypo too many and could lead to horrible things happening, including pre-mature death. To minimise those events should surely be a high priority and if many avenues have been explored without success then it's really time to sign off the pump paperwork.

We've seen these types of tech refusals before, of course, in the last 5 or 6 years since Libre hit the radar. It stinks of purse strings and worry about spending rather than offering the best possible care to diabetics - care which will ultimately reduce NHS spending on diabetes related complications. But what about NICE guidelines? What about them?! I don't know about you guys but, NICE don't live my life or manage my diabetes. I know what I need for my best care and to live my best life. Push for the technology which you KNOW will improve your life now and in the future. 

Billy agrees.

Thank you so much for reading this blog. I do appreciate your visit and your support. As you might know, I LOVE COFFEE! So I've teamed up with a thing called Buy Me A Coffee. If you enjoy my content and appreciate the time it takes to create such things then you can buy me a coffee! If you leave your Twitter @ name when you buy me a coffee, I will personally thank you. If you'd rather be anonymous then that's totally cool. Thanks for the caffeine!

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Nothing To See Here

Me wearing sunglasses and a black hoodie, standing in a field with a line of trees in the background on a bright and sunny day.

It looks like summer is coming to an end in the UK. At least, the super-hot days have been replaced with warm days and decisions to make about what clothes to wear when you venture outside. Hoodie's cover many bases and that's what I chose to wear, in the photo above, while on Day 2 of my Steptember Challenge, yesterday - more on that later in the blog post.

You may have already heard about my story of sight loss and subsequent visual impairment. It must be around 15 years ago when I was first told "You need lots of laser surgery" followed by panic, appointment avoidance and, 3 years later, a rushed appointment to Eye Casualty which ended with "I'm going to be seeing a lot of you".

He (my eye surgeon) was right. I was in the operating theatre several times from 2010 to 2012 and then again to fix ocular hypertension in 2014. For 18 months of my life I was almost entirely blind and unsure if I would ever regain any sight. 

I'm not here to repeat my eye complications story, today. The experience changed me and, to be frank, had I not regained any of my sight then I'm not sure where I would be or if, indeed, I would be here at all. I'm grateful for what I have rather than regretful of what I've lost. 

Diabetes is well known to be associated with sight loss, you probably know that. You might be scared of that happening to you, you might have experienced sight loss already or you might be avoiding the subject entirely - in which case, congrats on getting this far into this blog post. I'm acutely aware of what sight loss means and what it feels like to live with. 

Between 2010 and 2012, I was active on Twitter. 'Whaaaaat?! But your account was created in 2017!' - That's true. The account you know me from (@DiabeticDadUK) was born in 2017 but I've actually been on Twitter since the very early days in a professional and personal capacity. In 2010, I had no niche. I would tweet about anything and everything and it was fun until my retinas went pop.

I was aware of accessibility on my iPhone and after having it activated for me (I couldn't see the screen) it became my lifeline and an escape from my loneliness. Visual impairment robbed me of:

- The ability to drive.

- The ability to work.

- A social life.

- My favourite hobby (playing poker)

- My confidence and self-esteem

- I could continue this list forever but you get the idea.

The accessibility feature on my phone allowed me to stay connected. I could hear messages, the news, sports reports, who couldn't believe what on Facebook, if huns were OK and tweets! The tweets were my favourite thing because I could talk to lots of people and share stories and still laugh despite my condition. The most frustrating thing was when somebody would tweet a photo. I yearned to see what they were happy, angry, sad or excited about. I couldn't, nobody was describing their photos and I was left to concentrate on tweets which were text only. 

Here we are, in 2022, over 10 years later. I can see well enough to not need accessibility switched on. Again, I'm incredibly grateful. However, there are a lot of people in the diabetes communities which have a greater degree of visual impairment and they do need accessibility. These days, there is an ALT text option on tweets which contain an image or GIF. Amazing!

Last week, I launched the Accessibility Pledge on GBDoc through the @GBDocInfo account. As a community volunteer, I wanted this to come through the community and not through my own personal account. Other volunteers were happy with the pledge and we've all been trying to follow it since Sept 1st. It's been wonderful to see so many individuals adopt the pledge and adjust how they use twitter when it comes to using ALT text. You're a great bunch and I salute you all for doing that with such good spirit and kindness towards people living with visual impairments.

Other community accounts have adopted the same approach as GBDoc, too. I'm very happy to see those accounts setting a great example of accessibility to their followers. 

Sadly, despite encouragement and tagging other accounts we've yet to see a response of any note from the big charities and diabetes organisations which are not using ALT text. I have written to the CEO of Diabetes UK, Chris Askew, a person who has always been engaging and friendly with me - indeed, Chris was kind enough to host a GBDoc Tweetchat for us a few years ago - and he has promised to flag this up to the right people in his team. I think/hope we'll see changes to the DUK tweeted images very soon. 

Update: Diabetes UK now use ALT text regularly on their tweeted images. Thank you, Chris and team.

JDRF UK would be the next port of call for diabetes charities. As wonderfully active as the JDRF staff are on Twitter, very few seem eager to use ALT text. The JDRF UK account managed to use it once, in the last week. Quite why once and then not again is baffling and infuriating to people with visual impairments. On Saturday (yesterday), JDRF UK were very active in promoting a virtual event which I would've been delighted to amplify to my followers and across GBDoc accounts. But, sadly and inexplicably, no ALT text had been used so, I couldn't promote it. I can't amplify tweets which exclude people and tweets which contain no image descriptions are excluding a great number of individuals.

I think I've offered enough "heads up" tweets to JDRF UK and again here in this post. I won't be trying to send an email or a private message to the CEO or other staff members for fear of harassment! I'm also aware of wasting my time and energy in some places and I'd rather focus that on organisations who listen to community members and acknowledge their communications. I hope JDRF UK will follow the lead of others in this regard and do the right thing very soon.

Update: JDRF UK now use ALT text regularly on their tweeted images. Thank you.

I have a lot of connections and good relationships to lovely people who work in the world of diabetes. I will be approaching them all in due course, should they be omitting ALT text from their tweeted images. 

Guys, seriously, this is NOT work for you. Some of you are speedy-ass typists and excellent writers of copy. To describe your images in a sentence or two will not break you. I promise this is not some kind of a scam, I do not want your sort codes. Start doing this today, please! Even if you tweet one image every month, use ALT text on that image. It won't detract from your enjoyment of Twitter - you might even gain new followers and friendships because of it! It's a win/win situation. 

The Steptember Challenge? My poor, achy, feet. Find out more about this here

Thank you so much for reading this blog. I do appreciate your visit and your support. As you might know, I LOVE COFFEE! So I've teamed up with a thing called Buy Me A Coffee. If you enjoy my content and appreciate the time it takes to create such things then you can buy me a coffee! If you leave your Twitter @ name when you buy me a coffee, I will personally thank you. If you'd rather be anonymous then that's totally cool. Thanks for the caffeine!

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