Diabetes and Social Media

Click on the picture above to watch my video about how the Diabetes Online Community and social media has helped me. The video has been made for the new BERTIE online diabetes education programme which is being relaunched in September 2016! Keep an eye out for an update on BERTIE here where I will share more details. 

Laura x 

A letter to my 16 year old self...

Dear 16 year old me,

One day everything will change for you. You may not feel it now, or for a very long time in fact, but one day everything will start to get better. I promise you that.

You’ve just been diagnosed with Type 1 Diabetes. You’re scared, angry, confused and currently you’re very much in denial about your condition. You’re hiding away from it as much as you possibly can and at the same time you’re trying to fight it, to protect yourself and your family from the way it makes you feel. It’s exhausting, isn’t it? Each day is an ever weakening battle to muster up the energy to move, to think, even to smile, but you but you carry on regardless because you don’t know what else you should do. You don’t really understand what it entails, what this diagnosis will bring, and what you do know of it has frightened you enough to make you want to run as far as you possibly can and hide from it... (cont)

Creating new T1 Diabetes models of care

The weekend just gone was very special for me and one that I will remember as the first time that I have ever felt truly positive about change in Type 1 Diabetes care. 

I was invited to attend an inaugural meeting in which patients with T1D, carers, Health Care Professionals (HCPs) and commissioners would come together to develop ideas to improve the care that patients receive throughout the UK. It was an honour to be asked and to be amongst some of the best in the world of diabetes... (cont) 

We are the world in world diabetes day #insulin4all

Everyone with diabetes deserves to live long, healthy and happy lives! Insulin, test strips, blood glucose meters etc should not be a luxury, they should be available to anyone who needs them. We need to support people and advocate for them until they are provided with what they need to manage their diabetes! (cont)

The Diabetes UK Professional Conference - Time to Take Control

“After bouncing off stage I let out a huge sigh of relief. I looked around and saw faces staring at me, smiling at me, nodding and clapping... It was a very surreal moment, but one that will stay in my mind forever.”

I wrote this last year after delivering a presentation at the Diabetes UK Professional Conference about the Diabetes Online Community. I was able to provide an insight into what online support has to offer patients, their families and carers, and touching on how Health Care Professionals (HCPs) could introduce it to their patients. The audience was comprised mostly of HCPs, which gave me perhaps the biggest opportunity I’ve had to get my message across to those who can reach wide groups of patients. Social media may not be the biggest player when it comes to improving diabetes care, but you can’t deny that it has become a key influence for thousands of patients in the UK, if you want to find out for yourself then go online and listen to what they’re saying.

Tomorrow I will be heading off to London, once again, for the Diabetes UK Professional Conference, this year titled ‘Time to Take Control’... 

Read more...

Hid-In Multiway Insulin Pump Body Band Review

                                 

My review of the Hid-In multi-way insulin pump body band.

I hope you like it - feel free to share it :)  

                                      


You can find Hid-In on twitter, facebook and their website



Ninjabetic x

The Diabetes Online Community and Our Diabetes

After bouncing off stage I let out a huge sigh of relief. I looked around and saw faces staring at me, smiling at me, nodding and clapping... It was a very surreal moment, but one that will stay in my mind forever. 

The annual Diabetes UK Professional Conference saw 3000 Health Care Professionals (HCPs) come together to discuss the latest developments in diabetes care, the technologies, the research, the innovations and provide the chance to connect them with other professionals from around the world. When I was asked to give a presentation about the Diabetes Online Community and Our Diabetes I was honoured. There are no other words to describe the feeling other than an honour to be able to stand alongside such influential people in the world of diabetes, and to promote and demonstrate to them the benefits that online communities can provide to their patients.

My presentation was given during the Quality in Care (QiC) Diabetes session (I was lucky to be given the opportunity of being a QiC judge last year) and would be showcasing two diabetes projects from last year's QiC awards. I was introduced by Jonathan Valabhji, the National Clinical Director for Diabetes in the NHS. If I wasn't nervous before my presentation... I certainly was now! 

Jonathan introduced me and the presentation began... I spoke about my particular reasons for finding the Diabetes Online Community (DOC), ways that I interact on social media, what the DOC is and what it has to offer patients, families and carers, and statistics from online diabetes searches. I wanted to emphasise the ever growing presence that diabetes has online and that, for patients and HCPs alike, this is our future, much like diabetes technologies that are used for our treatments, and it needs to be acknowledged and developed further.

"I needed support, but I needed to be seen as more than just a hospital number, more than a blood test, more than a dose of insulin. I needed an identity to help me to identify with my diabetes - that's why I found the DOC."

"It promotes self-management, facilitates face-to-face interactions, helps those who feel isolated and it also disarms the stigma associated with having diabetes that the media portrays. It shows the real faces of diabetes." 

Something else that I wanted to highlight is what social media and the DOC can deliver to HCPs... From a personal point of view it has helped me to develop a great deal of trust and understanding for professionals and their roles. Although I'm often told to be a "patient patient" being able to see the daily struggles and barriers that HCPs are up against when trying to develop better services for us, makes me appreciate and accept the reasons for why I may not always receive the care that I want. Not only that but it gives an insight into what I can do to help deliver and develop services. If HCPs weren't online, sharing their stories and showing their side of the NHS, then I wonder how ignorant I would be to what is and isn't possible... I feel that I would view my care as being very black and white, when in fact that is far from the truth.

Next I went on to talk about Our Diabetes, an online discussion that I co-founded and am proud to say has opened up a whole new concept to diabetes tweet chats. I explained that Our Diabetes provides a weekly twitter chat that is open to anyone who has diabetes or is in any way involved in it. That the aim is to support, empower, educate and connect like-minded people and to give them a platform to be heard from. I explained that HCPs can use the platform to find better ways to deliver care to their patients, to ask what we need from a service, what can be done to improve experiences and the best ways to engage with those who have diabetes. 

"We help to bridge the gap between appointments as well as continually working with people to develop their confidence and goals for future appointments. By communicating we can share knowledge in a welcoming, safe and transparent environment."

15 minutes is only a short time to get across the message that the diabetes online community and Our Diabetes can be a turning point for people and that it can provide a constant motivation to stay on track throughout life with this long term condition. In that 15 minutes I gave a personal accounts of my life before using social media as part of my diabetes treatment... I wanted it to be real; to come from real experiences and to deliver it with real emotion... I feel that this was what set me apart from the other talks and lectures and judging by the response from the audience, it worked.

But it doesn't stop there... We need to keep the momentum going, keep thinking of new and innovative ways to engage with HCPs so they can "prescribe" the option of social media as part of diabetes treatments (as one member of the audience put it). Before my presentation I knew the importance of working with HCPs but now I understand it... Social media can be a scary place, but the pros far outweigh the cons... I think anyone that uses the Diabetes Online Community is proof of that. 

Ninjabetic x 

http://www.our-diabetes.org.uk/

https://twitter.com/OurDiabetes

https://www.facebook.com/OurDiabetesTalk?ref=hl

https://twitter.com/ninjabetic1

https://www.facebook.com/ninjabetics?ref=hl

A very British hypo

Just as I was about to leave the library today the lights suddenly dimmed. Before I could even look up, a tingling sensation rippled from my head all the way down to my toes.

Ahh - not an electrical issue, but a hypo. No problem I thought as I reached into my bag to find blood glucose machine and jelly babies. "Brilliant" I sighed as I realised I only had 4 babies left.

No problem I thought again as I munched on the babies and headed into the corridor to the vending machine to buy a Coke. "Friggin' brilliant" I muttered as I saw an 'Out Of Order' sign attached to the glass front.

Next option was to walk to the University shop. Only a 5 minute walk and hopefully by the time I make it there the babies would have kicked in a little.

"Oh just brilliant!" I exclaimed as I saw the queue and realised it was lunch time. I counted the students ahead of me... 22 of them. At this point my head had gone a little foggy and I couldn't decide what to do.

Don't queue up, just explain what's happening and head to the front - the rational part of my brain thought.

I can't do that! I'm British, this is what we do - thought the silly and irrational hypo part of my brain.

Push in and get to the front - thought the sensible part again.

No, I couldn't possibly, what would people think?! - thought hypo brain.

Drink it while you're queuing and pay for it when you get to the till - rational brain.

Shut up brain, people might think that's rude... you're not helping - thought hypo brain.

Eventually I made it to the front of the queue! Hooray!

                                              

"Just this please" I said as I tripped over my own feet.

"Do you have the right change? My till is low" said the cashier.

Your till isn't the only one that's low I thought to myself.

"Uhmm, I'll check" I said as I put my £5 note away and rummaged around, counting my change.

After a few seconds I heard the cashier tut.

"Sorry" I said. Why was I saying sorry??

"I don't have the right change I'm afraid"

"Do you have the 5p then?"

At this point my brain (sensible and hypo parts) had given up. I was feeling desperate for sugar now... My lips hands and arms were feeling numb.  

"No, but please do take this note and don't worry about giving me the change"

"I can't do that, I'll have to call my manager to get some change"

Forgetting all about being polite and British I grabbed the Coke, slammed the money in the checkout and walked out.

Feeling incredibly guilty 15 minutes later (and also wondering if I'd just shoplifted!) I went back into the shop and apologised. I even queued up again to do it!

                                                 

Ninjabetic x 

Pump it up!!

Hi! My name’s Laura and it’s been 2 years since my last DKA!

As strange as this may sound, staying out of A&E for two years is quite an achievement for me! If I turned up now I bet none of the staff would say; “Oh you’re back again!” or recognise my face. Often I felt like a part of the furniture. I even knew how to disable the annoying beep on the sliding scale machines.

Although I’m proud of myself for all I have achieved so far, my blood sugars still aren’t where they should be and this is having a huge knock on effect, physically and emotionally.

Despite numerous changes to my insulin regime, CGM loans, regular and lengthy appointments with my (very patient) consultant and a diabetes educational programme, I’m not getting any further towards good control – In fact my results show that I’m going to opposite way!

I knew diabetes wouldn’t be easy but for months now it has been a time consuming, energy draining, unresponsive  pain in the… pancreas!

My a1c has crept up - My frustrations have also crept up with it (can you tell?)

Hypos have become a regular occurrence - In the last 30 days 15% of my blood glucose readings were hypos.  Weight management is distracting and affecting me… even losing a few pounds is an impossible task.

It’s been almost 11 years since my diagnosis and still I regularly wake up feeling like I’ve not slept for weeks. I worry about falling off the diabetes wagon wheel and getting crushed by complications. I still feel faint at the sight of injecting myself… the bruises injections leave on my legs and stomach.

So soon I will start my six month insulin pump trial and hopefully this will be the start of getting me back. I desperately want to feel like me again… I want to be the bouncy, carefree, energetic ninja that I know is inside me! I don’t want to feel that I’m taking one step forward and two steps back anymore… I just want to keep stepping forwards.

Bring on team pump!!!! :)

Ninjabetic x

The Diabetes UK Professional Conference - Meet the Professionals

This week I attended the Diabetes UK Professional Conference which was held in Manchester. I was invited there as a member of the Diabetes UK Young Leaders Action Group to give a talk about social media and how it has helped me change my diabetes for the better. I was also there as Ninjabetic (a diabetes advocate) and as myself (someone who’s fast approaching 11 years with Type 1 diabetes).

 

I had two intentions while I was at the conference:

 

Firstly I wanted to get across the message that social media has been the most powerful tool in getting me on track with my diabetes.

 

Secondly I wanted to gain an insight into the professional world of diabetes, to hear what happens in meetings, behind closed doors and away from the patients.

 

The latter was very easy to do as no one knew that I was a patient, other than the few who recognised me from twitter pictures. I sat in talks about depression and best practice; I listened to speeches that included research, data analysis, trials and studies… The majority of it was new to me, and the majority of it impressed me.

 

Because so much information is kept away from the patients it was a real eye opener to sit and listen to consultants, nurses and managers talking about the issues that are discussed by patients on social media every day. Being able to listen to health care professionals was an inspiring and captivating experience. It was also very motivating to find that there was the same passion behind their voices as I read in people’s tweets or Facebook comments. There was a lot of willing to think outside the box and to reach outside of the comfort zone. I learnt a great deal from this side of the conference & I feel that other patients would greatly benefit from experiencing similar.

 

When it came to my talk about social media I knew that it would be very different to the talks that had been given throughout the rest of the conference. I started by saying that I didn’t have fancy statistics and charts, that I didn’t have any data or tables to prove that social media has helped me. The only evidence that I had was right there in front of them... it was me.

 

A few minutes before the talk I’d bumped into my old consultant who had looked after me through my nine non-compliant years. As I looked around the crowd I saw him sat quietly in the audience listening to everything that was being said, and it was a comfort to know that he was there to support me and to see how far I’d come.

 

I explained my journey and referred to the destructive years that I’d had prior to taking care of my diabetes. I explained what Ninjabetic was and what the Diabetes Online Community gave to myself and others. I finished by saying that one simple suggestion to start using social media to interact with others could be the turning point for patients. I wanted to emphasise that this free tool could help patients engage with their diabetes and be a huge benefit to their management.

I’d like to think that I was able to reach a few of the people who were sat in the audience, that I may have left an impression on those HCPs that I didn't know. If only one of them suggests the use of social media to a patient then I would know that I’d done a good job that day.

 

I admit that the support I had from the Diabetes Online Community before during and after the talk was overwhelming compared to the response from the audience. If I’d received anywhere near the reaction or support from the audience that I had from the patients and carers on twitter then maybe I wouldn’t have felt so disheartened when the talk was over.

So what did I personally take away from the whole experience? Positives and negatives... as I’d expected.

The same conversations are happening… conversations that excite us and spark debate amongst us! Conversations that could lead to great things for the future of diabetes care. However what stood out the most for me is that both patients and Health Care Professionals are discussing the same topics… they just aren’t coming together to do so in the way that they should be.

 

Communication is key.

 

Ninjabetic