Wednesday, November 30, 2022
Review - The T:Slim X2 Insulin Pump
Friday, November 25, 2022
Upgrade
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!
Thursday, November 17, 2022
The Six Principles of Good Peer Support - My Thoughts
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.
-------
To read the full document then tap/click here
Sunday, November 13, 2022
Peers
BUY DIABETIC DAD A COFFEE HERE
Prefer PayPal?
Friday, October 21, 2022
Charles Bonnet Syndrome
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.
Sunday, October 16, 2022
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.