Saturday, 30 September 2017

DXAmsterdam - The Cost of Diabetes



In the interests of being bang up to date and cutting edge in my reviews and information here's a few words on my trip to Amsterdam with the Abbott Freestyle Libre team in June. Yes, only three months ago. I must slow down in my rushed reporting otherwise you'll be visiting this blog every month instead of twice a year!

Obligatory 'biased view' disclaimer out of the way first. I was one of nine bloggers from the UK and Ireland invited for the weekend in the city of canals and killer bikes. There we met over 20 bloggers from around Europe. Yes, they paid for my travel, food, a few of my drinks, though definitely not all and provided a pretty good, fun-filled weekend. On the flipside they did not demand any quick blogging, which is a good thing, or 'positive' reporting. All views and opinions are my own.

Now if I'd got to this quicker I'd be able to give a fresh and detailed review of the weekend. Instead what you get are the bits that have really stuck in my mind. In the interests of saving me repeating what has been written before I've given a few links at the bottom of this to other blogs. Please do click through as it's a great selection.

For me the weekend was a great chance to meet the other bloggers with different experiences and knowledge sharing a common dodgy pancreas. Some of this was entertaining and some were pretty upsetting and grounding.

Related to this I'm now going to focus on the thing that is still on my mind three months later.

On the Friday night we had a brief presentation from Matthijs Graner who runs http://www.eendiabetes.nl/. His presentation was around the idea of a simple thought leading to interesting projects. He told the story of how he had worked to build photographic calendars of young people with type 1 diabetes in the Netherlands. 

We were then asked by Matthijs to have a think about things we could do that could be useful in different countries. Chatting with Mike and a few others we started to think about the thing that had already come up a few times in conversation. Living with our diabetes thing 24/7 it's easy to become engrossed in our own experience and focus on the bad bits for us. It quickly became apparent that while the UK has challenges for funding and technological availability we also have all insulin provided free at the point of use. Along with this, people with type 1 diabetes have access to blood glucose testing strips. Sometimes their are local limitations on quantity but a good argument or change of can normally fix this.

For me I also have access to an insulin pump to deliver my insulin as I meet criteria for this. Along with this all cannulas, reservoirs and batteries for the pump are paid for. And when I need to replace this, although I will probably have to justify why I need one to improve my control, I do not expect it to be an issue getting it replaced. The make and model might be more limited but it’s a start.

In the UK the government collect money from general and salary taxation. That pays for the National Health Service. The basic concept of the NHS is that care is free at the point of need so that if you need medicine or treatment you do not have to pay up front before it is provided. Before people dive in here and say “Ah, but….” I’m trying to summarise the generality. Specifically for type 1 diabetes, insulin and test strips are paid for by everyone who pays taxes so that the person with type 1 diabetes does not pay when they order a refill of insulin, test strips or pump supplies if they have a pump. Local awkward GPs and CCGs may mean you are experiencing different but I’m speaking for the majority.

Outside of this I currently pay for the Freestyle Libre to provide me an up to the minute graph of where my blood sugars are. As an example, as I write this my number is 4.5. But I can see from the graph that this number is good as the line is relatively level and the direction of the indicating arrow is horizontal. This is a personal choice for me to make my life easier. If I chose not use it I’d be looking at a similar number on my Contour Next meter and wondering if I’m dropping and whether I need to read an impending hypo or the reality which is I’m fine for now. It's not cheap and definitely not an option for all but it's a choice I've been able to make to make my D-life easier.

We’ll come to the rest of the world in a moment. What about the rest of Europe? After we shared our idea around the room it quickly became apparent that each country provided a different model for paying for your diabetes. For some pretty much everything was paid for by the government and for others hardly anything was. In those countries where it was ‘paid for’ there may be additional health insurance to pay for because you have type 1.

Some models of provision were simply bizarre to me. An attendee from Turkey explained that her insulin pump was partly paid for by the government. She had to pay roughly half and then pay for all the consumables. And after 4 years when the warranty expires the pump has to be handed back and a new one purchased even if it’s working perfectly well. Totally mind-blowing.

Of particular concern to me was the testimony of Maria from Greece. The country’s financial strife was such a problem that test strips were now becoming something that had to be bought and she was part of a an active movement that was campaigning very hard so that people with type 1 diabetes had access to very basic levels of care and weren’t just neglected. Once again it struck home to me how fortunate I am to have the NHS.

These discussions showed to me that it’s easy to look at the green grass elsewhere and cherry pick what other countries do well and ignoring what they do badly. As I write this a life critical campaign called Insulin For All https://www.t1international.com/insulin4all/ is trying to ensure every person type 1 around the world has access to the basic liquid that is needed to keep them a live at an affordable price. For those reading from the UK it may surprise you that one of the countries where this problem is largest is the 13th richest country in the world with the common perception that it is one of the most developed. The USA. Yes there are people across the pond who are making choices every day over whether to pay for food or insulin. As a child of the NHS I find this truly shocking.

As I sat in Amsterdam hearing fantastically inspiring stories from people like Claire Lomas eating dinner with my new blogging friends at the back of my mind was a guilt and gratitude that still lingers to this day. I’m fortunate to have been born when and where I did which gives me access to high quality insulin deliverable in a safe manner in a way that I can afford. 100 years or 10,000 miles in another direction and my story would be completely different and possibly much shorter.

Last up comes a thank you to Abbott. I believe their intentions are to improve technology and the access to it. As a private company, yes they will need to ultimately make a profit, such is life. But all the people I have met from Abbott and the look in their eyes convinces me their personal aim is to improve the lives of people with all types of diabetes. They will get things wrong, such as the random expiry dates of sensors and massive supply issues when the Libre was first released but I hope they will learn from these and over time the cost of the sensors also drop to allow access to all irrespective of local funding. Disclaimer is nice and clear at the top so I'll allow you to judge my integrity but I know I'm OK.




As promised here are the links to other blogs and also another link to Insulin for All. For a good list of documents relating to insulin costs in have a look down Laura’s timeline on Twitter. https://twitter.com/Kidfears99

Every Day Ups and Downs
Thrive Diabetes
Adrian

Thanks as always for reading. See you in a few months!

Thursday, 25 May 2017

Am I The Only One?

This blog is for you. 

Are you a person with Type 1 diabetes of any age but most likely over 12?


Are you the only person you know well with diabetes?


Do you just want to be 'normal' like your friends?

Why can't you eat what you want when everyone else is gorging on chocolate?

Does blood testing scare you?


Why does it scare you? Is it the pain of the stab or the pain of seeing a number that proves you’re failing again? And does that number come with massive guilt?

Have you had appointments with doctors and nurses where you just get told to control your bloods better and to then lower or raise your blood sugars as if it is easy?

Does the idea of a check-up fill you with dread?


Does the standard "How is your control?" question at other medical appointments also hurt you like a knife when asked?


Does every other person with diabetes have either perfect control, or blindness and amputations? They must have, as those are the only two options offered.


Are there so many things to control and juggle that it’s overwhelming?


Is it all too complicated and hard to understand?


Do you have other medical things going on that mean diabetes isn't your only worry?


Do you sometimes eat food without injecting when you know you really should?


Do you get mad at people that should care about you always telling you what to do? 


Even if they don't say it, do you feel like they wonder why you’re not doing better?

Have you had diabetes for many years but still don’t understand some things that you think you should know? Does this make you feel Diabetes Stupid?


Do hypos scare you?


Does being high scare you?


Is it all just too much hard work to bother?

Now ask yourself a few more questions and think carefully about the answers.

You're not the only one!


I'll say it again. YOU ARE NOT THE ONLY ONE!

What does a blood glucose number actually mean?

  • It’s not a score, it’s a sign of what you need to do next. If it’s low, eat something, if it’s high, then maybe you need some fast acting insulin or some activity. Don't feel judged.
Why should I engage with my diabetes?
  • You know this already but it’s not going anywhere for a very long time. So maybe it’s time not to fight it; time to work with your diabetes instead of against it? It is part of you and you are special, so it is special too. It's not going away. Maybe it's time to woman-up or man-up and face it head on.
  • No it's not fair you've got to test, inject, and handle the highs and lows when your friends don't. And yes it does make you a bit different. But they've got their own hang-ups too. Trust me; everyone has something that they think makes it hard for them. At least your challenges come with sweets as medicine!
Whose hospital appointment is it?
  • It’s yours. It’s not the doctor’s. So prepare beforehand. If you’ve got questions or things that are worrying you a lot, write these down and take them with you. And don’t move from your seat until they have answered your questions. You live with diabetes 24/7/365. Make sure that your one 20 minute segment with a consultant every 3, 6 or 12 months is valuable.
  • If you are finding things hard; tell your doctor or nurse. If they know what you are really thinking then they can help you better to smooth things out.
Am you the only person who finds Type 1 Diabetes hard?
  • No. Definitely not. I do!
  • We're all out here. You are not the only person with the Type 1. You know this already. But you are also not the only one who finds it hard. Keep remembering this and change the way you think. You’re not failing, you’re finding it hard. And it can get better.
Have you got a plan for your diabetes?
  • Make a plan. Ask yourself what would you like to change? Then seek help to make that change. Go looking and the responses you get might surprise you. People want to help. Including people like me. And also people closer to your age who are living through the same challenges as you today.
  • Find information? Use the links at the bottom. Dip in, dip out, then dip back in when you have a better idea about what you want to do.
  • Speak to people like you. Yes, they exist. Is there a local diabetes group for young people? Have a look online. Ask your diabetes nurse. And if there isn't, ask them if there’s anyone else locally who they think you might get along with.
  • Ask the stupid questions. You might be surprised as others probably don’t know either. Diabetes IS complicated. No-one expects you to be an expert and know everything just because you've had it a month, a year, a decade, or your whole life. Please never be afraid to say "I don't understand".
  • Talk to your parents, carers, partners or family. They want the best for you. They really do. I was younger once and it’s only now as a parent I can understand how much my parents worried about me. Take a chance on telling them you find it hard. What is there to lose? Nothing. You’ll probably find you'll gain their respect. They are probably the people closest to you and the ones that ask you most frequently what your latest blood glucose number is or how much insulin you’ve taken. They do this because they worry about you. And they've heard the same doom laden promises of the future as you have. After you’ve read or watched this, talk to them. Tell them how you feel.

Now it's time for some cliché phrases


It’s your diabetes, no-one else's. You can own it and you can be the one in charge of it.

You are not alone. Open the door and you will find others facing the same struggles as you.



YOU 
CAN 
DO IT!



This photo isn’t to prove how I like jumping over fire. It’s to prove that nothing should hold you back and any limits are mostly set by you. Let's lift those limits as high as they can go.


Make a change by clicking through the links below and/or talking to people close to you about you and how you feel.


Thank you for reading this. Please share it and talk about it with the people around you. You might be very surprised at the positive response from others.


This blog is also available in video form here. The words are the same, the medium is different





____________________




T1 Resources - This is your encyclopedia of Type 1 info with all links doubly checked by a healthcare professional and then someone with Type 1 like you.

JDRF - The worldwide charity with a single long-term goal - to get rid of your diabetes. That's sounds pretty perfect to me. The website has some great articles too.

Diabetes UK - The UK's largest diabetes charity that also looks at Type 2 but still has plenty of advice for Type 1s.


Thank you.