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 

The Diabetes UK Professional Conference and Social Media

The Diabetes UK Professional Conference is over and now it’s time to reflect. In my column for The Diabetes Times I wrote about the topic I would be presenting at the conference and how it needed to grow from previous years. It needed to make more of an impact. I think it’s very important that after each talk the audience goes away with something to think about, something they can try to implement in their departments, and I believe that many of them did.

One topic, language, came up during the presentation. That day, language had been discussed via twitter by patients who were discussing the use of the word ‘non-compliant’. It hit a nerve with many people at the conference, patients and Health Care Professionals (HCP's) alike, and luckily the group I was presenting with had a stage to address that problem. In my presentation I made a point of telling the audience that I was labelled as ‘non-compliant’ due to being in DKA so many times - I make a point of mentioning this in all of the talks I do. I was not able (for so many reasons) to manage my diabetes in the way that I needed to, but in no way did that mean I was purposely not complying with rules that had been set for me. A patient who is struggling to manage their diabetes is not a rule breaker, they do not need the added pressure of feeling that they are purposely causing problems for others, they need support and guidance and they need (and very much deserve) respect in the way they are talked to and about. I hope that the use of language continues to improve.

During my session I talked about my journey with diabetes, trying to condense it into a 10 minute presentation, and tried to convey the seriousness of the first 10 years after my diagnosis. However, I didn’t need to tell them how dangerous my habits of not testing my glucose levels or taking my insulin correctly was. The audience was made up of health care professionals, they knew the seriousness of my actions. The way that I used to manage my diabetes shocks many people, myself included, but time and time again I hear about patients who are just like I used to be... HCP's ask me about how I turned things around and my honest answer is by using social media, however I still feel that I chose to gain control far too late. I wish I had done it sooner, I wish it had been suggested to me sooner, and that’s what I hope to get across to HCP's when I talk to them, that a turning point for their patients could be just around the corner.

During my presentation I talked about how my recovery began. For me it was a combined recovery, using face-to-face clinic appointments alongside social media. I think for many HCP's this may sound like a strange combination, or certainly a few years ago it may have, but now I know many people who, like I did, use social media as a part of the diabetes treatment. For so many, thousands in fact, social media plays an important role in not only peer support but also diabetes education, building confidence around living with diabetes, learning to trust and communicate with our health care teams, developing our own knowledge and understanding about the condition and many more aspects. Social media isn’t just about sharing pictures of cats, it’s so much more than just being social, it’s about learning, directing, engaging and developing. The face-to-face appointment aspect has really helped me too – It made me realise what a wonderful, dedicated and passionate health care team we have in Portsmouth. In a funny way it wasn’t until I started to really trust them that I realised how passionate I could be about the condition that had tormented me for such a long time.

The ‘and finally’ part of my talk came with a take home message - although there are thousands of patients who use social media as a part of their diabetes treatment, there are still thousands who don’t. There will be many reasons for this and, as I said during my talk, social media isn’t for everyone, but there will be many patients who can and will benefit from it. Perhaps it would just take that small suggestion, like I had three years ago, to take a look and see what comes of it.

Three years ago, when Partha suggested I set up an account for local patients to connect with one another, I didn’t think it would help my diabetes in the slightest. I really felt that I was a lost cause, however I’ve achieved a lot in the last three years – A reduced HbA1c, dormant retinopathy, confidence in living with diabetes, knowledge of how to avoid complications, feeling able to take control and improve my self-management and perhaps the most important to me is being involved in making changes in how diabetes care is delivered for others. If I had known all of this after my diagnosis, before I took so many wrong turns and ended up in trouble with my health, I would have done things very differently. I would have taken responsibility and had better outcomes and that’s what I hope others can achieve. Like I said, it’s not for everyone, but for some, social media can be one of the best tools they have against diabetes.

I gained 88 new twitter followers during the Diabetes UK Professional Conference. Over half of these are Health Care Professionals… Now I’m excited to see how we can work together on social media for the benefit of patients. Let’s see just how much of an impact we had and which changes have been made at next year’s conference…

Ninjabetic x 

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...

Basal Check Time

This is a joint blog between myself and Pete Davies (@swelldiabetes), a Diabetes and Endocrine Consultant from Sandwell. Pete is always keen to engage with patients and listen to their ideas about how diabetes care and self-management can improve. He wants to find ways to make basal testing easier and more enjoyable for people, so we gathered our thoughts on the subject and put them on paper. 

What Pete and I are hoping to do is to set up a live basal test via social media. We don't have the logistics just yet, but we do have a few ideas in the pipeline, so watch this space.

We would appreciate it if you could comment at the bottom of this blog (or on facebook/twitter) with the 1 thing you find difficult about basal testing. It'll give us some ideas on how we can make basal testing easier for you!

We hope you enjoy our blog :) 

Pete's blog

Good ideas can come at any time & I feel at my most creative when I am with groups of PWD (People With Diabetes). Last week we had a DAFNE course for insulin pump users. One of the games us educators like to play is to tot-up the number of years of D experience in the room. 

6 PWD. 

136 years experience of living with diabetes.

Humbling.

We talked about loads of things & they had plenty of questions. These days I always take the opportunity to do a gentle sales pitch on social media as a means for getting on-going support, practical and emotional too. The reception can be mixed, this group seemed quite open to the idea. One person was already using Twitter, two others use Facebook. None of them presently use it to get support with their diabetes.

HCPs a have a strong belief that regular basal checks help PWD keep their pump therapy on course. At the same time, realists accept that it's rather like those stretches we know we should do after exercise, those five pieces of fruit and vegetables we know we should eat each day... It all sounds so easy and nice, in principle…

During our conversation, my sales pitch about Twitter and about the need to promote easier basal checks seemed to meld together into a Dragon's Den pitch:

Group Twitter chats could be just what is needed to help support PWD to complete their basal checks and to make the right to changes to their basal insulin doses when they are armed with good information.

So PWD on #ourD & #doc, I'm looking for £100,000 for a 30% stake my business... 

What's that you say? Have I registered my intellectual property??  

Pete (@swelldiabetes) 

My blog

As Pete mentioned, basal tests are something that people with diabetes *should* do, but sometimes... don't. We each have our reasons for why we do or don't chose to follow the 'rules' or advice that our HCPs (Health Care Professionals) give us, and of course we should all be free to make our own decisions, but perhaps there is a way that basal testing could be easier? Maybe even fun? Would that encourage people to basal test for our own benefit AND keep our HCPs happy?

I can count on both hands the amount of times I've done basal testing, and since starting on the  pump I've really slacked doing it only once in the last year. Some of my reasons for why I haven't done as much as I perhaps should have are:

Timing - Is there ever a good time to basal test? I'm constantly on the go, whether I'm at Uni, studying in my own time, working, looking after my patients on placement etc, I often find that my mind is on other things. It's not that my health isn't as important, but a lot of the time I need to pay full attention to what I'm doing and give it all the energy I have. I like to have a quiet day to do basal testing and that in itself is a very rare thing for me.

Hypos - They nearly always seem to crop up when basal testing is about to commence! Obviously if a hypo occurs during a basal test this indicates that my background insulin may be too high and allows for changes to be made, but 9/10 if a hypo's coming it comes before the test starts. Then, once the hypo has been treated we have to wait again until we can start the basal test again... what if there isn't time to do it again?!

Food - I don't want to be hungry for 4-6 hours! It's as simple as that. If I do basal tests I tend to do it on a day off and days off are for relaxing, enjoying the things that I can't enjoy whilst I'm at work/Uni/placement and charging around at 100mph. Abstaining from food is the last thing I want to do.

Rules - What are they exactly? One HCP will tell me one thing, another will tell me something different. Can we eat zero carb food whilst basal testing? How long do we wait after a hypo to start the basal test again? Which blood glucose level should we start the basal test at? What happens if I happen to be rushing around that morning/afternoon/evening and it affects my levels? So many questions... and so many different answers.

Patients and Health Care Professionals working together online

Following on from my talk at the Diabetes UK Professional Conference last week I've been buzzing with ideas about how patients and Health Care Professionals (HCPs) can work together, via social media, to engage with each other in order to make changes to patient care. 

After a meeting with my University's Patient and Public Involvement lead this week, I came away as a brand new 'Expert by Experience' student representative! I'm not sure how I feel about being called an 'Expert' but I suppose it's an empowering title, which is what patient's need - empowering. Anyway... this is a completely new role to me, well officially anyway, as I've always been involved in projects like this but I've never been an 'official' representative before now. I'll talk more about this once my first meeting (next week) has been and gone... but for now I'm incredibly excited about the role. 

Anyway the purpose of this blog is to share an exciting follow on from the Diabetes UK Conference... A diabetes tweet chat with WeNurses (the online nursing community) and Our Diabetes (a part of the diabetes online community) about how patients and HCPs can work in partnership in online spaces. Perfect timing given all the chatter about it in recent weeks! 

This was a great example to demonstrate to the HCPs who have recently started following and interacting with me online what I meant during my talk when I said that we CAN work together, that social media CAN break down barriers that sometimes cause a divide between patients and professionals in a clinical setting, that online there is NO hierarchy and that way of communicating CAN be transferred to a health care setting... As Michelle Mello (@MSHMello) said during the tweet chat; "People with diabetes are nurses & vice versa so why are their barriers anyway?"

The tweet chat asked the following questions:

• How can nurses use social media to listen to the people we care for?

• What are the rules surrounding interaction with patient groups on social media?

• What do patient groups want and need from nurses in this space?

• Do patient groups want/need health care professionals invading their social space?

• Moving forward how can we collaborate and listen to people with diabetes (and indeed other long term conditions) using social media?

                                                     

I had a lot of opinions and ideas bouncing around my head, both as a student nurse and also as a patient, but as I was in charge of the Our Diabetes twitter account on the night of the chat I wasn't able to share as much of my personal thoughts as I would have liked to. So I thought I'd do that now...

For me, the online space that I share with HCPs in an invaluable tool for engaging with them in the comfort of my own home, in a relaxed environment, where I can think about my questions and answers and not feel under pressure to perform. I know that there are boundaries as to what I can and can't ask - questions relating to my personal diabetes treatment and my regime etc aren't discussed with HCPs - end of. I wouldn't put any HCPs in the position where they are being asked to give me personal medical advice online and if I was offered personal medical advice, I would politely decline. However, if there's something that I want to research, something from a reliable source, then HCPs often point me in the right direction.  

The online space allows me an insight into the side of the NHS that, as patients, we rarely see. If it wasn't for tweeting nurses, doctors, commissioners etc then I feel that I would be in the dark about important issues relating to my care, this something that helps drive me to understand why I don't always get the care I want or need. If I was in the dark then I think I would disengage with my health and my HCPs through frustrations with the system - that's hard for me to think about.

The online space also allows me to tell my story. It gives me a voice to share my experiences of diabetes, the NHS and the care I receive. Often I don't realise that sharing snippets of information can lead to changes being made. I'm just chatting away, feeding back the positives and negatives (often without any intention other than off-loading), but a HCP will see this and learn from it. 

That's the beauty of health care social media - If we can learn from each other without realising, just think what could be achieved when we really put our minds together.

Ninjabetic x 

More information about the WeNurses/OurDiabetes tweet chat and transcript - http://www.wenurses.com/MyNurChat/archive/archivewenurses11032014.php

Follow @WeNurses on twitter

Check out the WeNurses website -  http://www.wenurses.co.uk/ 

Follow @OurDiabetes on twitter 

Check out the OurDiabetes website - http://www.our-diabetes.org.uk/

The Diabetes UK Professional Conference

The annual Diabetes UK Professional Conference is being held next week (March 5th-7th) in Liverpool.

"Diabetes UK's Professional Conference is one of the largest healthcare conferences in the UK, attracting up to 3000 attendees.

Innovative and invaluable to healthcare professionals, the conference delivers information on the latest global developments in diabetes care and research, offering a unique opportunity for delegates to network with professionals from varying fields. The exhibition brings together those from voluntary, corporate and pharmaceutical sectors who share an interest in diabetes care." - Diabetes UK.

I am honoured to have been invited back to the conference to give another presentation about the Diabetes Online Community, and this time including Our Diabetes, as part of the Quality in Care (QiC) Diabetes 2013 programme.

During my presentation I'll be talking to diabetes Health Care Professionals (HCPs) about how and why I found the Diabetes Online Community and the way that it has helped me turn my life around for the better. I'll also be showing examples of what the #DOC has done for other patients, parents and also for HCPs. I really want to emphasise how much patients and the people who care for them can be helped with this amazing platform, and how it can assist HCPs in delivering the best care the can to their patients.

I'll also be talking about Our Diabetes (#ourD) and showcasing the diabetes tweet chats that started last year. For those who don't know, Our Diabetes brings a new concept to tweet chats because they are hosted by a different member of the diabetes online community each week, they then discuss a diabetes topic of their choice. This doesn't just mean that patients are hosting but anyone who is involved in diabetes in some way can do the same.

As an admin member for Our Diabetes I've seen and heard really positive comments about Our Diabetes and hope that I can pass this on in my presentation. 

I just hope I do the #DOC and #ourD justice! 

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