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…