Sunday, 20 April 2014

Guest Blog - Diabetic Emergencies and the Paramedic



This is a guest blog post written by Mark Turner.

Here is a little about Mark:
  • Previously an economist
  • Can speak English, Irish and Spanish
  • Trained in the USA and UK as an offshore and remote medic, lifeboat medic and ECP
  • LOVES - Nurses, Guiness and his job
  • Diagnosed with Type 1 Diabetes on November 15th 2013
  • Works worldwide and lives in Ireland and Southampton
This is what Mark wrote about seeing Hypos from his view as a paramedic...




Diabetic Emergencies and the Paramedic

..or 999, what we know, what we do and how it works out for you...

We learn a lot about Diabetic emergencies from the earliest level of our training for our medical degrees; Type 1 (usually diagnosed early in life, insulin dependant), Type 2 (usually lifestyle related, later in life, often controlled by diet, metformin or gylclazide).

In particular, we are well trained in recognising, and treating the Hypo, and also the DKA patient.

Working in some areas, I might get one or two Diabetic patients in a run of four 12 hour shifts, but in others (especially London – 8 million potential “customers”!) 3 or 4 diabetic emergencies in a single shift!

Hypo 999’s are usually called by a member of the public (finding someone U/C or confused and helpless) a family member, or increasingly – the Police!
The Police often call us as they are unsure if someone is drunk, or under the influence of drugs or indeed having a hypo! All three situations we can deal with, and are part of the routine of any shift.

I was once called to a man, lay on a train track – the police were stood on the platform, and network rail were struggling to cut off the electricity supply to the live 3rd rail. The poor man was confused, wailing and very frightened – everyone assumed he was either drunk and/or suicidal. By the time it was safe for me to climb down onto the track, I already had a suspicion.... Sure enough, he was stone-cold sober with a BM of 2.0 The poor fellow simply had a hypo and fell onto the track. He was a very lucky man.

Patients often say “its ok, I’m not diabetic, you don’t have to test my blood...”  - Paramedics ALWAYS test your BM! Its part of every single patient assessment – Resp rate? BP? BM? SP02%? Pulse? PEARL? Skin colour? AVPU? ECG? History taking, Medications, Allergies, Social Situation, Safeguarding etc.. etc.. BM isn’t just for the diabetic patient -  it can be low in an elderly patient with Diahorrea & Vomiting, a marathon runner or swimmer, or high in a patient with a Heart Attack; where the body is using sugars as part of the “flight or fight” reaction to stress.

Hypos are usually easy enough to treat in the pre hospital environment – we recognise them quickly as part of our opening assessment of the patient, even if no one is around to tell us they are Type 1 D’s using insulin (so wear a wristband people!!!!) – we can give you “oral carbs” if you are conscious and able to swallow (cup of sugary tea madam?), or “hypostop” sugary gel (not very nice stuff).

If you are U/C we can give you an Intra-muscular injection of Glucagon (although not useful in children or alcoholics) – its a useful and fairly rapidly working treatment – but you must be careful to get it into muscle and not a vein! Last resort for the Paramedic is to cannulate and begin running through intravenous Glucose .

The important thing for the medical professional to remember is to KEEP CHECKING THE BM over AT LEAST 30 MINUTES! Your body has been starved of glucose – part of the triangle of life (water, oxygen, sugars) and the Brain will immediately suck up all the sugar the Paramedic is introducing to the patient – followed by all the other organs that are sugar-short; its like a gang of grannies at a car boot sale, with all that sugar “selling out” quickly, so often you need a repeat treatment to stabilise your patient!

Often you will find a Diabetic who is very dependant upon their partner to manage their condition – its almost always Males relying upon the wife or girlfriend to look after them!!!!

A good example of this is a patient I attended when on the Rapid Response Car in Winchester. He was U/C in the foyer of the theatre. The staff were upset, worried and bewildered that this well dressed and well spoken (sober) man, suddenly seemed to behave oddly and collapsed. They of course suspected a heart attack and I was despatched at speed to attend. Within moments, I was getting a set of “obs” and his BM was 1.1mmol (what a good memory I have for patients I attend? ). I put a line in, and administered around 30G – about 300ML – of 10% Glucose. It took awhile for him to come around, and sure enough, as I wrote above ; his BM was up and down until it stabilised. He explained that his wife was away – she usually cooked and helped to administer his insulin. She was away visiting family for a few days, so he worked late, alighted from the train and decided to see a play. Sure enough – BANG! HYPO! I took him into Winchester A&E for observation for a little while, and once there he told my Nursing colleagues and myself that he made his living as a Medical Negligence Lawyer prosecuting us guys! Needless to say, he was an absolute gentleman and thanked us all – I ended by hoping I would not see him again either in the street or in a courtroom!

Hypos can be difficult for the Paramedic. Especially if you are alone with someone. Each of us can react differently – after all we have different brains with bodies requiring or accustomed to different levels of sugar for energy.

Luckily I was attending a patient with my colleague Harry – we arrived at a house where the wife and daughter of the patient were maintaining a safe distance from the patient. He was a 120kg, six foot plus, builder – long term type 1, but normally well managed. However, he was known to become aggressive during hypos, and we had to gingerly inject the Glucagon, and once he began to assume normality, encouraged him to drink coca cola from a straw in a can. Within moments he was the perfect gentleman, with no memory of his angry hypo!

DKA’s are more scary than hypos – not fun to deal with – IV line in, run fluids and run straight to Resus in ED on blue lights, where our Nursing and ED Dr colleagues will get some arterial blood gases and call “upstairs” to the Endocrine guys who know more (and can do more) for those patients. More about this subject another time.....

It helps to have been a Paramedic in a number of countries, over 14 years – although Diabetes is Diabetes whoever and wherever we are! Nonetheless, the shock of being diagnosed myself was dreadful. The only good thing I can take from it, is that I somehow manage an extra 1% from my personal reserve of care for each and every person who is suffering the same as me. All my patients get 100% - I don’t need to have their condition or trauma to do that, but now I find myself giving 101% and that little extra support, care and reassurance to the Diabetic.

Mark Turner
Paramedic          


You can follow Mar on twitter at - @markturner30




Friday, 18 April 2014

One of those hypos...



I was woken up this morning by my partners alarm beeping away at 7am.

“Do we have to go to work?” I asked as I tried to remember which day it was. I was sure it was Sunday…

“Not today, I set it by accident.” He replied.

Feeling pleased I rolled over and went back to sleep. I woke up again at 9am full of energy and enthusiasm…

“I’m ready to start my day!” I said, waiting for a response. When I realised I wasn’t going to get one I gathered my essentials - laptop, ipad, phone and blood glucose machine, then I headed to the front room.

My blood sugar reading was 13.7mmol/l so I took 1.6 units of insulin as a correction. I didn’t feel hungry enough to eat anything so I made a cup of tea instead and settled down to start on an essay. Three hours later I was ready to eat. I grabbed some noodles and counted the carbs, there were 40 grams per portion which meant I needed 5.4 units of insulin as my blood sugar had come down to 8.5mmol/l. I used the multiwave function on my insulin pump which meant that the insulin could be delivered over a certain period of time. I choose 4 hours and gave an immediate dose of 1 unit – I’ve learnt over time that if I take more than 2 units of insulin when my blood sugar is between 4-9mmol/L I end up having a hypo, so I tend to use the multiwave function for times like this.

45 minutes later we were heading out for a walk in sunny Southsea, so I checked my blood sugar again. It was 5.7mmol/l which 9 times out of 10 means that I'm heading towards a hypo. It’s very rare for me that my blood sugars will stay at a ‘good’ range, so I ate a few jelly babies as we left the house.

Around 30 minutes later I felt my hypo symptoms coming on. A sudden tingling sensation washed through me from head to toe and walking in a straight line became quite difficult.

“I’m having a hypo” I said as I reached into my bag for my jelly babies. As they don’t seem to be working very well as a hypo treatment at the moment we went to a shop to buy a drink to treat the hypo instead. Only a few minutes after my symptoms had started everything changed very suddenly.

“I can’t see properly” I said. My other half held my hand tightly.

“Shall we go back to the car?” He asked. I nodded… at that stage no words would come out of my mouth.

The car was only 5 minutes away but the walk back seemed to take hours. My vision had changed again and objects around me started to go past in a flash. The only way I can describe it is like a strobe lighting effect. Nothing was staying still but flashing in front of my eyes. People walking past seemed to be coming out of nowhere, even shop doors seemed to springing up from the ground. This has happened to me a few times before but this time everything seemed to be sped up, apart from me. I was aware that I was walking quite slowly and gripping onto my partner’s hand. I remember feeling scared that something might jump out at me, and thinking that people were watching me (which they probably were). I desperately wanted to be in a safe place.

The next thing I knew I was finding it hard to catch my breath, and every object that seemed to be jumping out caused me to take in a sharp breath. I suddenly became so frightened I started to cry. My poor partner must have been getting the strangest looks as he walked through the street with me, holding onto what must have looked like a drunk girl in tears… at 1pm.

I then found myself stood by my car as he put his hand into my bag to find my car keys. I looked at him and my brain didn’t quite catch up. Why was this person saying he’ll drive me home? I stood at the driver’s side of the car for a few seconds, again my brain hadn’t caught up, and then walked around to the passenger’s side to get in.

I don’t remember much after that but I woke up in bed wearing pyjamas with a bar of chocolate on the pillow next to me.

Thinking back on it now I feel so silly for crying, but at the time the whole situation was incredibly frightening. I hated feeling so out of control, even if it was only for a few minutes, and I’m just glad that the majority of my hypos are much easier to deal with.


Ninjabetic x  






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