Tuesday, 8 April 2014

1 year of pumping

Today I’m celebrating 1 year of being on an insulin pump!

Throughout my teen years, until the age of 26, I had refused to acknowledge that insulin pumps even existed. At the time I had only just come to terms with the fact that I needed to accept responsibility for my diabetes and injecting regularly, after years of hiding from my diabetes, and the thought of having a pump made my stomach turn. I wanted nothing to do with them at all… they could all stay in their fancy boxes and keep well away from me!

I refused to discuss pumps for several years when my Aunt, who was a pump rep, described them to me at family gatherings. I refused to discuss them when Pratik Choudhary showed me one in his office after I had travelled all the way to London for help with my hypos. I refused to discuss them when my consultant advised that going on a pump could give me much better control over my swooping lows and bouncing rebound highs, and also help to eliminate the fear of needles that had caused me so many problems in the past.

I was very ignorant as to what a pump could do for me, or even what their job was. Through refusing any pump information, I couldn’t see that it could hugely benefit me and help me to turn my diabetes around.

It wasn’t until I was with my friend Hannah one day, having a meeting at Diabetes UK HQ, when I suddenly realised that I did in fact want, and need, one of these insulin pump things! Hannah let me bolus her for lunch by pressing a few buttons on her blood glucose meter which sent information straight to her pump via bluetooth, and then delivered the insulin through a tiny plastic cannula in her stomach! Amazing, I thought to myself as I poked a needle into my stomach, wincing as the needle bent.

I was injecting around 8 times a day… Hannah only had to change her pump set every 3 days.

I didn’t like injecting around people I didn’t know… Hannah just had to prick her finger and her meter and pump did the rest for her.

I had big ugly green and grey insulin pens… Hannah had a cool all singing all dancing gadget.

I could only inject in 1 or half units of insulin… Hannah could have 0.1 units, making insulin dose adjusting for carbohydrate counting much more precise.

I was fed up of feeling like a pin cushion on 8 jabs a day, so snacks were out of the question… Hannah could snack whenever she wanted to!

Did I have pump envy?? Yes I did!!

Only a few weeks later I was asking my consultant if I could be put forward for a pump trial and soon after that I was able to do everything that Hannah did. My life changed dramatically; my hypos were less frequent and severe, my HbA1C came down to the lowest it's ever been and my confidence soared when it came to my diabetes self-management.

The rest they say… is history.

Ninjabetic x

P.S I also have some exciting news about my eyes that I will have to save for another day… I don’t want to jinx IT until the news is confirmed in a few weeks time, so watch this space!

Wednesday, 2 April 2014

Junior Cup 2014

The lovely folks at Medtronic announced this morning that registration for the Junior Cup 2014 is now open! "But what's the Junior Cup?" I hear you say... The cup gives kids the chance to represent the UK and Ireland in this years international footy tournament and to meet loads of new people!

This event takes place from 22nd-24th August in Holland and registration closes on 30th June. So sign up quick!

Requirements for entry are:

  • Boys and girls with Type 1 diabetes
  • Using an insulin pump
  • Never participated in Junior Cup Diabetes
  • Between the ages of (10-14) Damn... I'm slightly too old :(
  • Must be available to travel to the Never-Neverlands for 22nd-24th Augues 2014 (3 days & 2 nights)

Sorry to more mature (is that the right word?!)  people who are reading this... maybe we can set one up for us oldies at some point...

All you need to do to register is click on this link http://www.juniorcup-diabetes.com/ and fill in the registration form! Simples :)

Ninjabetic x

Wednesday, 26 March 2014

From covert to overt rebel

I was once described as a covert rebel when it came to my diabetes self-management and the treatment I need from my health care team. I suppose this meant that I would hide a lot of the issues that I had with diabetes, not only from Health Care Professionals (HCPs), but also from myself. Obviously this isn’t something that got me very far… but being secretive was a reaction that evolved from many health related experiences that I didn’t understand or that I didn’t want to go through again.

So today I suppose I’m being a rebel, but an overt rebel.

You know those forms that we’re given to establish our emotional and mental state when it comes to life with diabetes… PAID questionnaires, mood questionnaires… do you have a smiley or a frowny face questionnaires etc. Well I’ve had some of these for a few weeks now, sitting in my lounge collecting dust. Having filled in the exact same forms only 2 months ago and expecting some sort of feedback afterwards, I decided to think things through in more detail than I usually would before completing them...

I suppose they occasionally make a good coaster for my tea, but obviously they have a much more important job. But what is that job? It’s never been explained to me. I know that I’ve been handing in these questionnaires for many years now. I recalled in a blog recently completing one when I was around 18 years old, and I’ve done quite a few since then for different HCPs… but what are they for? What can they do for me? If a questionnaire can evoke tears in a patient, surely they are addressing an issue that needs to be followed up?

I know what they tell me… they tell me if I’m coping or not, if I’m engaged in my health or not, if I’m worried about the future with diabetes or not and many more things. But then what do they do? Once I’ve completed them what happens next? Are they a box ticking exercise? Maybe they go towards a giant pool of data that’s been collected about patients all over the local area… maybe they just go into a filling cabinet – out of sight out of mind? I really have no idea!

What happens to patients after we’ve filled in these thought provoking forms? I can only talk from personal experience but after filling them in I’m left with an open door… one that I’ve kept closed for many years… a door that once is opened is hard to close again when I’ve been asked to address questions such as:

Do you feel scared when you think about living with diabetes?

Do you feel constantly concerned about food and eating?

Do you have feelings of guilt when you go off track with your diabetes management?

So I answer the questions that are placed in front of me, often with test results or blood glucose patterns swimming through my head, with only myself and my HCP in the room, in an environment that isn’t exactly relaxing and with no explanation of why I’m being asked to do this or what will happen next… and I face up to the fact that actually, these questions do force me to reflect on how I’m feeling, managing and coping, but I just hadn’t acknowledged it until that moment. Why hadn’t I acknowledged it? Because I can’t always do that on my own. Quite often that’s a feeling that scares me… and then I leave. I go home on my own and I reflect. It's something that I do without even realising I'm doing it, but I think about my answers... Cue the covert rebel wanting to come back into play.

Then I repeat this routine again when I’m asked to…

However this time I haven’t. I’m waiting for an answer. I’m waiting for an appointment so I can ask “why and what’s going to happen afterwards?”

I understand the importance of collecting data but I also know, as a patient, the importance of assessing, planning, using interventions, and feeding information back to patients… involving them in every aspect of their care. 

If I am going to be addressing issues that life with a long term condition can bring, as and when it is required of me, then I will only do so when there is a plan in place for the repercussions of this exercise. My HCPs may call me difficult for taking this stance, people reading this may not agree that it's the right thing to do, but in order to be engaged in my care (which is what my team wants) I want to be engaged and informed in all aspects. I think that's only fair.

Reading this blog back before hitting the publish button I feel that I already know what the answer will be when I ask my question... but I hope that I'm wrong. As for the support that I may or may not get as a result of these questionnaires... that's a whole other topic to be discussed another time.

Ninjabetic x 

Thursday, 20 March 2014

Cook & Count Carbs

Cook & Count Carbs is a new app that allows users to count the carbohydrate content of home-made food.  

"Cook & Count Carbs is a beautifully designed, simple to use app that takes the guesswork out of carbs counting. A vital tool for those with diabetes that will encourage and inspire home food preparation and cooking." - Taken from the Cook & Count Carbs press release.

After speaking to the app's creator on twitter a few times she asked if I'd like to try the app and see what I thought. I didn't need much persuasion as I'm a bit of an app geek and I'll give anything a go once! However I was dubious as to whether or not this app would remain as a a permanent feature on my beloved iPad (myPad). 

You see I've tried all sorts of diabetes apps in the past but none of them have lasted for longer than a week! I find that they just don't excite me enough and capture my attention or offer me anything that I don't already know, or indeed something that my blood glucose meter doesn't already tell me or store for me. All of the diabetes apps that I've tried in the past seem to be very similar to each other and don't offer much that makes them stand out from the crowd - this always disappoints me. In the past I have tried carb counting apps, but after experiencing a rather nasty hypo due to some inaccurate carb info on one of them I made sure I stayed away from them. This has lead to me having a rather boring diet consisting of (and I hate to admit this) mostly packaged food (anything that has carb info) or if having home cooked food, making an educated carb counting guess (which almost always leaves me with high or low sugars). 

Anyway, here's my experience using the Cook and Count Carbs app for the first time...

I decided to bake a chocolate cake as I'm not much of a cook (possibly down to not being able to carb count for home cooked food). The cake turned out pretty well...

I'd already downloaded the app and had a quick look through the options it gave. The app itself is very clear and well laid out, the font is easy to read and is large enough for people like me (who refuse to wear their glasses) to read. The only info that is on the screen is info that needs to be there - options, features and directions. 

The features include:

Build a recipe - I used this to store my home made cake recipe on. You add ingredients by searching for them with the search option, you then add the weight in grams or ounces, you do this for all ingredients in the recipe and then click save. This then allows you to take a photo of the finished product (I love taking photos of food!), to name the recipe and an option to share it on twitter or facebook. You can also add and save a method and by using the 'total' option you can divide the recipe into portions and this will total the amount of carbs per portion.

Recipe book - Includes ideas for starters, mains, baking and pudding, low carb and gluten free. Each recipe includes the ingredients, weight in grams, crabs per 100g and the total carbs, the method to make the recipe, an option to share the recipe on twitter and facebook and a total button which will divide the recipe into portions and give the total amount of carbs per portion

Information - This page includes: Search tips, preferences, cookery tips and measures, about carb counting, tips for healthy eating and living and about. 

So what did I think about this app? 

The maths... I know that I'm not very good when it comes to maths but knowing that the app is adding the carbs for me and then dividing it into carbs per portion takes a lot of the worry about getting it wrong away from me. Not only that but knowing that the carb content for ingredients has been calculated for me takes away the guessing game that often stops me from eating home made-food and getting it wrong.

What I love about it is that it is so simple, but so effective. The way that it's laid out makes searching for info incredibly easy - navigation and being user friendly is very important to me as someone who uses technology day in day out for my diabetes and for daily activities. I felt that the whole experience seemed very effortless - there was no going back and forth looking for different pages or lost data - the process of adding ingredients, taking photos, sharing on social media and totalling carbs flowed in the perfect order to make the process easier.

I really liked the layout and design of the app - the bright colours and large text, no overcrowding of information and very tempting looking photos. I think this would encourage me to share my pics via facebook and twitter because in a way I want to say "Look at me! Look at what I created with this app!" As I said I don't cook very often but it's something that I would like to start doing and part of trying something new, for me, is also about sharing that with others.

Did I come across any problems?

I did, but the first was down to me. When I was adding the icing sugar to my list of ingredients I automatically searched for icing, this then took me to the option for royal icing and I added 250 grams. What I should have searched for was icing sugar which would have given me the correct option. So adding royal icing gave me a higher carb total per portion that it would have if I'd entered the correct info (icing sugar).

The only real problem that I had was that I couldn't find an option to delete recipes that I had saved, though the app creator has said that this will be an option with the next update That's it though... there was nothing else that I could find and if there was then I would be digging for the sake of finding something to write.

So this app will indeed be staying on my iPad! For those of you who see me (in person, not via social media) you are very welcome to check up on that as most of you will know my iPad is just an extension of my arm now... It never leaves my side! 

Ninjabetic x 

Check out the Cook and Count Carbs website, twitter account and facebook page.

Tuesday, 18 March 2014

T1 International

If you haven't heard of T1International then this is a great chance to find out more!

Elizabeth Rowley has has had Type 1 Diabetes for over 20 years and is the founder of T1International, a platform used to raise awareness for those around the world who may not be as fortunate as others regarding their diabetes treatments and care. 

Elizabeth and I met as Diabetes UK Young Leaders and have recently been talking about an exciting new project she's working on... I did an interview with Liz to find out more. Here's what she had to say;

Hi Liz! Tell me a bit about yourself and how T1International came about...

My name is Elizabeth Rowley. I grew up in the United States in a small town and was diagnosed with Type 1 diabetes at the age of four. As I got older and learned more about the world outside of my small town, I began to wonder what it might be like to live in another place with poor healthcare systems or what might happen to me if I found myself amidst a natural disaster or conflict of some sort. I discovered that getting my insulin and diabetes supplies would be very difficult in certain situations, and I thought about the many people around the world that actually face those circumstances daily.

I have a background in International Studies, and I came to London in 2011 to study International Development and learn more about health and development obstacles. The more I learned, the more I realised that access to medical care, supplies (like insulin) and education aren’t easily available or in any way affordable for a huge number of people living with diabetes. For example, some people’s life-saving insulin can cost as much as an outrageous 75% of their annual income. Soon after, I started to search for organizations or initiatives working to solve the problems that people living with diabetes in resource poor settings face. Despite coming across a few things, I couldn’t believe how little the issues were talked about or how few people knew about the situation.

I decided to create a space for anyone who might be interested in topics related to global Type 1 diabetes and access to medicine and education – and T1International was born. I wanted to be able to put all the organisational information and existing literature about these topics in one place to not only show how much more needs to be done, but to allow others to easily find existing information that initially took me months to scavenge.

Since its beginning last year, T1International has grown hugely. You can visit the site and see the resources, information, and original content we have produced.

So what's the latest T1International project all about?

Through the interviews I conduct regularly on T1International, I discovered the organization AYUDA (American Youth Understanding Diabetes Abroad) and I knew that it was something I wanted to be a part of. In June, I will go to the Dominican Republic to plan and put on a summer camp for kids with diabetes (and their families). Diabetes camp meant the world to me when I was growing up and it helped me to take control of my diabetes and my life. This project is the perfect opportunity for me to give something back and ensure that kids who are lacking supplies and education get the knowledge to help them survive and thrive with diabetes. For many, it will be their first chance to interact with others living with diabetes, so it will be life-changing for them.

Dominican campers learning about their diabetes

You can read more about my motivation for the program and the program itself at my fundraising page here or at www.t1international.com/ayuda.

In order to keep the grassroots charity projects sustainable, AYUDA’s model asks volunteers to fundraise significantly towards the programmes they will be working on. I have to raise nearly £4,000 before I travel to the DR to support the educational camps in June.

I am not taking my fundraising goal lightly. My husband (who also has type 1 diabetes) and I recently opened an online marketplace through T1International. This Marketplace is something we have wanted to do for a long time to use our combined interest in art, and all things creative, to support international diabetes causes. The T1I Marketplace is an online shop where you can purchase artwork made by people with diabetes (and supporters of people with diabetes) in exchange for donations to the AYUDA program.

Every item you ‘buy’ will support kids in the Dominican Republic to live happier, healthier lives – so it’s a win-win for everything! In the future, we hope that the T1I Market can be used to fundraise for other causes as well, so we won’t stop after we reach the AYUDA target!

Some of the art available at the marketplace

This sounds like an amazing project! What can people do to help you achieve the goals for your project?

Simply spreading the word about T1International and the AYUDA project will help. Raising awareness is the first step in all of this, and taking action is the next. You can take action by supporting my AYUDA fundraising effort through a donation or by reading about the issues to understand more about what some people living with diabetes in other countries are facing.

Check out the Marketplace and get something awesome in return for your donation! Please note that we can customize almost anything to make sure your art is special to you. And don’t let the $ put you off. AYUDA is an international programme but its head office is based in the USA, which is why all the money is in $. Luckily, the exchange rate from $ to £ is great right now, so $20 is only about £12!

You can become a ‘Friend of T1International’ by sharing what T1International is all about on your own blog, page or social media outlet. You can also support us by sharing ideas of what you would like to see more of at T1I in terms of global diabetes. We are always excited to share the voices of people living with diabetes from around the world and pleased when people want to help our efforts. We are all in this diabetes community together, so if you have an idea for T1I, a way you would like to be involved, or something we could support you on, please get in touch!

And are there any future projects on the horizon?

T1I is collaborating on a few different projects at the moment. Some I cannot reveal too much about yet, but there is definitely some exciting stuff in the works!

One thing that we do hope to add on the T1I site as a continually-growing resource is information about what it is like, practically, to live with Type 1 diabetes in various countries around the world. It will offer some basics about what the healthcare system is like in Brazil or Togo, for example, and will explain that means for someone with Type 1. It will share known information about availability of medicine and education, and will look at whether or not there are disparities throughout the country where some people receive medicine and quality care while others might not.

That’s just one example of something we hope to offer, but we are working with some great partners, like NCD Child, to ensure that voices of young people with diabetes are heard resoundingly throughout the globe so that together we can help to not only raise awareness, but to bring a positive end to everyone’s diabetes story, no matter where they live.

You can also follow Elizabeth's journey on twitter via @T1International and on facebook

Saturday, 15 March 2014

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/

Monday, 10 March 2014

Break free

I recently joined a diabetes forum and like most forums the people using it are looking for support and answers to their questions. I haven't been very active on the forum, but I've been watching as people from all over the world give different advice and opinions on diabetes subjects.

Today, whilst absentmindedly scrolling through posts to see if anything caught my eye, I read one from a lady who was desperately unhappy. She wrote about her partner who, rather than being supportive of her diabetes and the complications she is suffering from, has told her that she is a burden, that she has ground him down and that he can't offer her any more compassion. She wrote that he's always angry with her, that she feels scared and lonely and that she shouldn't be putting him through the stress of her illness. 

I felt terrible that she was going through such a difficult time on top of the pressures she already has, and tried my best to write some comforting words to her, to give her some reassurance and show some understanding. Soon after, more comments had appeared in reply to the post. Almost all of them said that they were in the same situation. They said that they hide their emotions and sometimes their diabetes for fear of upsetting others, fear of rejection or becoming a burden on their partners.

I felt so angry but also so saddened by this that I wanted to shout, to find each and every one of them and tell them that it isn't right. No one should ever make another person feel that way. I know, because I was once made to feel that way, and it was one of my biggest pitfalls.

Aged 17 (1 year after my diagnosis) I met someone. He was 26 and at the time was the best thing in my life. At first my diabetes wasn't an issue. He tried to understand it, but it was difficult for us both as I didn't understand it myself. 

Soon though the comments started...

"Do you have to inject in front of me? Can't you do it somewhere else?"

"I had to take more time off work to come and see you in hospital, it's making me look bad."

"You'll have to call an ambulance for yourself, I'm going to bed."

"You've put on weight, if you didn't have to inject then you wouldn't have to eat."

There were many more...

After a while some of the comments stopped because I had, by that time, stopped taking my insulin, stopped testing my blood sugars and stopped looking after myself. I remember the one and only time he came to a hospital appointment with me... I was with the diabetes nurse and she asked me to fill in the 'Problems and Associated Issues with Diabetes' questionnaire. One of the questions was about support and I could feel him watching me. I burst into tears and had to leave... He told me that it was a waste of time.

For almost 5 years this went on until one day I'd finally had enough. Breaking free was the best thing I ever did, it was a huge weight lifted, but by that time the damage had been done.

If I could have shown my 17 year old self the physical and emotional consequences of not taking care of myself, then I know that I would have never let it get that far. It took a while to come out of my shell, but now I'm confident and feisty and if anyone ever made me feel that way again it would be the last thing they did.

If there's anyone out there who feels that their diabetes makes them a burden or makes them feel that they aren't good enough, please think about how the future will look if you start to believe it.

Ninjabetic x 

Sunday, 9 March 2014

Ninja be crazy

This blog post was written by my better half, Amar, about having a girlfriend with diabetes...

I was asked to write a blog about having a diabetic girlfriend (by my girlfriend, who is diabetic). It's taken me a little while. Not because I was reluctant to reveal my thoughts and feelings in a public domain (I have no shame). Not because I find it difficult to express myself. I took a while because I don't really think about it. To me, it's like writing a blog about having a red haired girlfriend. But when I think about it, it's something that has shaped and defined her life. And since we spend a lot of time together, it's become a big part of my life.

Before I met Laura I didn't know too much about diabetes. My grandmother had it while she was being cared for at my parents home, but I had moved away so I didn't see too much. All I remember was the constant struggle to get my grandmother to eat porridge for breakfast since it kept her sugars steady.

The first day we actually spoke at work, I didn't know she had diabetes. She was just the girl who sat next to me and asked me to taste her prune juice (not a euphemism). When I did find out, I remember googling it and asking her questions, but I didn't really find out about it until she linked me to a blog she'd written about hypoglycaemia, and that began me reading about peoples experiences and really finding about about diabetes. When we hung out it really didn't have an impact at first, except sometimes she'd give herself insulin, and she had no sugar in her tea.

The first time I really saw the effects I was with Laura at her place, and had a bad hypo, while we had been drinking. I went upstairs to find her in her room, in her bed, making next to no sense. I knew she needed food, so I went to get her biscuits. I brought them back and she spoke incoherently to me for some time, before feeding me biscuits with her feet. It sounds amusing, but at the same time I felt everything was completely out of my control, not something I'm used to. Afterwards she had no recollection of what she said (both due to the low sugars and the alcohol) and I promised not to bring anything up. I lied. It's been funny every time.

The next time a similar thing happened Laura was sober, and I saw the full effects. I was asked to leave the room as Laura hid under my covers. I went to the shop and returned with 7 chocolate bars (I know how to treat a woman) and left them with her. This is the day I learnt not to leave someone having a bad hypo with 7 bars of chocolate.

Day to day, I never really think about Laura's diabetes. But without it, she wouldn't be the person she is today. I'm probably just used to it now, sometimes we cut our days out short because she's having or has had a bad hypo, sometimes it's fine. I regularly ensure I have a supply of isotonic energy drinks. It's all normal to me now. Checking her sugars in the car, feeding her jelly babies, not putting sugar in her tea, making sure I don't pull out her pump as we wrestle. It's just our relationship.

Hardest short ramble I've ever written.


Saturday, 8 March 2014

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 



Saturday, 1 March 2014

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!