Diabetes Blog Week - The Cost of a Chronic Illness

This week is Diabetes Blog Week which is in its 8th consecutive year. This is my second year participating. Diabetes Blog Week was started by and is still instigated by fellow type 1 Karen Graffeo in Connecticut who blogs at Bitter-Sweet Diabetes.

“Karen created this annual week-long blog carnival as a way for multitudes of D-bloggers (now more than 100 participating each year!) to create an unprecedented sharing of perspectives on issues relating to our illness. You can learn more about this effort, and sign up yourself if interested, here.” #DBlogWeek!

The Cost of a Chronic Illness

Insulin and other diabetes medications and supplies can be costly. In the US, insurance status and age (as in Medicare eligibility) can impact both the cost and coverage. So today, let’s discuss how cost impacts our diabetes care. Do you have advice to share? For those outside the US, is cost a concern? Are there other factors such as accessibility or education that cause barriers to your diabetes care? (This topic was inspired by suggestions from Rick and Jen.)

I’m one of the lucky ones. I was born in Ireland. I’ve lived there most of my life. But I’m not lucky because I live in the Gorgeous Green Kingdom. I’m lucky because 50 years ago a bunch of people who live with diabetes got together at a meeting and said that their mission was to provide free insulin for everyone living in Ireland who needed it. (Yes, we pay for it through our taxes but really, it’s free.) And two months later it happened.

Then in 1971 all other diabetes medication and supplies became free. This is why I am lucky.

I’ve been following the American coverage of the cost of insulin with a broken heart and feeling of helplessness. And I know that there are countries in the developing world where a vial of insulin is a number of days of walk away from the people that need it.

I did have difficulty accessing diabetes technology in the form of an insulin pump and a cgm and diabetes education is still difficult to access here but this seems so insignificant compared to not being able to afford or get your hands on insulin.

I read the book "Breakthrough: Elizabeth Hughes, the Discovery of Insulin, and the Making of a Medical Miracle" over the Christmas holidays and it detailed those first few years where Insulin production was unstable and there wasn’t enough for everyone. Neither of the manufacturing companies couldn’t make it fast enough. Access to insulin was because there wasn’t any.

My diabetes doesn’t cost me anything but my time. This is sometimes a bit of a weight on my shoulders as my clinic appointments happen when I am supposed to be collecting my children from school. But it’s also a huge relief.

Volunteering helped me find my Vocation

May 15 to 21 is National Volunteering Week. The focus of this year's campaign is to showcase the benefits that volunteering can have on a person's health and wellbeing. Volunteers often say that while people think that volunteers are helping them, it's often them who help the volunteers.I’ve been volunteering for 10 years! And the most important thing I have learned from volunteering is that it’s more than just the reward for doing good; the benefits, for me have been tenfold.

Volunteering has enabled me to create a local diabetes support community when I desperately needed it, it has helped me become an empowered person with diabetes and fostered a diabetes advocate. This has lead to numerous volunteering opportunities which allowed me to grow and develop as a person. And ultimately find my calling! But I could not have done any of that without the help of training from my local volunteer centre in Clare (Dolores & Sharon) and Diabetes Ireland.

A LITTLE BACKGROUND I was diagnosed with Type 1 diabetes when I was 20 years old. It’s a lifelong chronic condition where the food I eat does not become nourishment for my body. If I did not take insulin through my insulin pump I would die of malnutrition.

Type 1 diabetes didn’t stop me from doing anything in my life but, until I met my husband, living with diabetes was very lonely and I felt very isolated.

Living with type 1 diabetes requires a great deal of concentration and mental energy. It’s not just about taking insulin and healthy eating. It requires calculating the amount of that medication based on what my blood sugar is at that point, how much carbohydrate (yes, I weigh carbs) I am about to eat and how physically active I’m likely to be in the next 4 to 6 hours and more. It’s a lot of work.

In 2007, I had moved back to Ireland after a four year stint living in the US. I was thirty, a stay at home parent with two very small children and didn’t know very many people in my new town in my old country.

I was receiving support from my medical team but it just wasn’t enough for me. I needed to hear that “me too” response from peers.

Fostered the Peer Support Facilitator So with the help of the Clare branch of Diabetes Ireland we needed to get started Clare Diabetes Support and they have been growing from strength to strength for almost 10 years. We became a community that helped each other live with the daily challenges of living with diabetes through sharing our own experiences.

Enhanced the Graphic Designer In 2010, I came across the Australian Type 1 Diabetes Network’s version of the “Type 1 Diabetes Starter Kit; A Guide for Newly Diagnosed Adults” and I knew it was something that could be adapted easily for people with type 1 diabetes in Ireland. I approached Anna Clarke in Diabetes Ireland about it but the time and resources that would be involved they just didn’t have. So, when she told me to “Go for it!” I thought why not! I’m very proud of it and very grateful for Diabetes Ireland’s support. What I learned during the process of adapting this booklet what most of what I needed to organise a national type 1 diabetes conference called Thriveabetes.

During the time I was working on the Starter Kit, Diabetes Ireland decided to shorten their name from the Diabetes Federation of Ireland and they needed a new logo. As a graphic designer, they approached me to take on this task. I still have to remind myself wherever I see it that I helped do that. It’s kind of awesome!

Both of these volunteering opportunities earned me the 2012 Diabetes Ireland Volunteer of the Year Award.

Fostered the Blogger and Advocate I created my first blog post in May 2010 as a way to pass on the information I learned about local health services and as a way to connect with more people with diabetes. I tell people that I blogged from inside of a closet for many years because I didn’t have the confidence to say “I write a blog”. Until my volunteering lead me to receive a scholarship to attend an Advocacy MasterLab in Florida in July 2015. Yes! FLORIDA!!! And this was A-Mazing. I learned so much from this experience and six months later I came out of that closet and told people I actually write two blogs! The blogs have lead to me engaging more with social media and that in turn lead me to be nominated by Diabetes Ireland for the International Diabetes Federation’s Social Media Award for which I was shortlisted. http://www.idf.org/idf-europe-prizes

The IDF selected me as their representative to attend the Medtronic Community Exchange Event in Barcelona in November 2016. www.bloodsugartrampoline.com www.thriveabetes.ie

Fostered the Thriveabetes Founder & Event Organiser Thriveabetes: The Thrive with Type 1 Diabetes conference is probably what I spend most of my volunteer time on these days. This event uses every skill I have learned though all of those years of volunteering from financing to volunteer management.

Volunteering Make Us Stronger And there you have it! What started out as a cry for help over time became a “what can I do to help you.” I now spent all of my free time writing, connecting with my diabetes community (online and offline) and advocating for all the things we need for people with diabetes.

I have found something I am passionate about. I can’t wait to see where volunteering brings me next!

Diabetes Ireland Celebrates 50 Years

Last Thursday evening, Diabetes Ireland launched a book detailing their 50 years in existence. I was so proud to be there to witness it, so honoured to be asked to contribute and excited to meet some diabetes legends. Local TD, Róisín Shortall did the honours and gave a lovely speech, as did chairperson, Hilary Hoey and CEO Kieran O’Leary.

Did you know that the very first AGM of what’s now Diabetes Ireland took place on the 2nd of April 1967 in the Mansion House in Dublin?

Do you know that 750 people showed up???? Yes, seven hundred and fifty people!!

They must have come from all over. The first mission of the organisation was to make insulin free to patients. They achieved this within their first two months. And then secured all other diabetes supplies on the Long Term Illness scheme in 1971.

This was especially poignant because as we were celebrating 50 years of free insulin and diabetes supplies, at the same time in the United States of America, THE richest nation in the world, the House of Representatives voted to repeal the health care act that made insulin accessible, and affordable to most of its millions of it’s citizens with diabetes. It was heartbreaking.

I’m quite lost for words for my fellow PWD’s in America. I hope to be able to find some, words that is, for a post soon.

When the speeches finished, I was approached by a lady, Una Wilson, who wanted to tell me that her daughter, Orla, who lives in America sent her a piece that I had written for DiabetesMine.com and complimented me on it.

I’ve always loved to hear stories, other people diabetes stories, and to hear about how Diabetes Ireland began and about the people who started it has been fascinating for me. So when Una told me her name, I immediately knew that she was employee number 2 with Diabetes Ireland - the very second person employed, and launched into a hundred questions about how that happened and what it was like. Una was diagnosed in 1982, her daughter Orla, then 12 was diagnosed a couple of months later and Orla’s daughter has been diagnosed recently.

The family of the very first person employed by Diabetes Ireland, Phil Vizzard, were there too and represented her proudly. Phil’s daughter, Nicola, talks in the book about being a small army of fundraisers; “shaking boxes outside football matches, raising sponsorship or collecting money in pubs”.

This book was exciting for me to read because I’ve been meeting other volunteers for years and never really got to sit and chat with them. It’s through the book that I found out how much of a LEGEND Donegal’s Danny McDaid is. Danny is a long time volunteer and a two time Olympian. I mean he has a 10K named after him!!!

I had no idea that there was a story behind the start of the southern branches. I also had the opportunity to meet Tony O’Sullivan a fellow person with type 1 diabetes and a GP, who was chairperson of Diabetes Ireland about the time that I began volunteering and went on the become chairperson of the International Diabetes Federation.

It was a lovely evening and I hope that this book finds it’s way into the hands of every person with diabetes.

Everything Burnout Except Diabetes

In the diabetes community we talk a lot about diabetes burnout and diabetes distress but I seem to experiencing a form of life burnout at the moment. It’s everything but diabetes burnout. Yesterday, my daughter asked me, as she does most mornings on our short walk to her school, what I had planned for my day?”. I sighed and said “I have so much to do and I really don't want to do any of it”. My response made me realise that it’s becoming a problem.

And if I'm really honest I've been feeling like this for a while. I sit in front of my laptop thinking about all the things I would like to do, all the things I need to do and then I get so overwhelmed I get maybe one or two things done.

I'm also physically tired and physically hurting. I have a torn achilles' tendon and an achy, stiff hip. Both of these things are annoying and are a big influence on my level of activity.

I know I need to take a real break! I need to stop thinking about conference and event organising, about writing blog posts. I need to switch off from social media. This is the hardest thing to do. I really don’t want to not be connected to the world outside of my house. For me, there is no way to the social media that I need to have for my own support and the social media that partners the event organising and blogging.

I'm so grateful that all things diabetes seem to be going, well, as things usually go with type 1 diabetes, trampoling.

I've lost my enthusiasm for all the things I loved. I know it's just temporary. I know it’s a problem. I know I will address it… and soon.

P.S. Anyone fancy meeting up at the Thriveabetes Sugar Surfing Workshop in Dublin????

Hole-y Health Service

The Irish health service is a mess! You probably know this! I know this! I've known it for a very long time. I’ve been a regular customer patient of our health services for many years, and I continuously tell people about how terribly under funded it is and the chronic shortage of endocrinologists and diabetes nurse specialists.

Yet, I still wasn't prepared for the shock when I walked into the Accident & Emergency department to find my mother on one of three trolleys (that was only the trolleys I could see) lining up the corridor with no chance of getting a bed in a ward, for a second and consequently third night in a row.

This post is not directly related to my life with type 1 diabetes but it does have implications on the health care I receive.

She had gone to A&E on a Friday evening, having been instructed to do so by her GP, she waited six hours in the waiting room before getting as far as a trolley. During those six hours, she had been triaged, had bloods drawn and was shuttled back and forth from the waiting room outside the A&E departement. Her "trolley" was placed in the main corridor entrance/exit hallway of the A&E department. I surmised that she was given a trolley because her treatment had to be administered through an IV. There she stayed, her trolley moved from corridor to corridor to allow for new patients to take up trolleys, until Monday late morning.

When I visited with her and it was extremely difficult; I was standing at the end of her trolley but as it was the main entrance/exit to the department, I was in the way constantly.

While there I noticed a couple of things that were disturbing to say the least.

The patient across the narrow corridor wedged into an alcove which was JUST wide enough for a trolley. I noticed her towel was drying on a IV drip rack. My mother said she had been there for 4 nights. This prompted the question of how many bathrooms/showers were there available for all of these patients. The answer is one bathroom with one shower for all the patients which was used as a storage area also. Hygiene standards so low in an area where hygiene is so important.

My mother has private health insurance and was using it. So her health insurance company will be charged as if she had a bed in a ward. Neither hospital, patient nor health insurance company wins in this situation.

I notice a young couple with a small child who were shuttled back and forth several times from the waiting room outside the A&E departement. I notice that it was the gentleman who was wearing the admittance wristband. This lead me to believe that because they were waiting on test results and he didn’t require treatment he was left in the waiting room.

WHY ARE PATIENTS ON TROLLEYS?

It’s really very simple! And it’s been said over and over by many, many experts.

“The reality is that there are not enough acute hospital beds, so people who need to be admitted to hospital end up on trolleys,” Dr Fergal Hickey, the IAEM’s Communications Officer, explains to TheJournal.ie.

Our hospitals need more beds and to have more beds they need more nurses. And we have nurses who want jobs. So what the fecking hell is holding this up?

Money! So let’s invest more in our health service and let’s pay more income tax to pay for it. I, for one, do not mind one little bit paying more taxes to get it! If it means that I, or anyone I care about, is well looked after if they get sick.

WHAT WE HAVE AT THE MOMENT IS NOT ACCEPTABLE!

Yet, this has been the situation in our Irish hospitals since I moved back to Ireland in 2006. We all remember the actor, Brendan Gleeson's passionate plea for his mother on The Late Late Show!!!

Our emergency departments are a huge health and safety risk. Major! If you are not sick going into a hospital, you will definitely be sick when you leave! There is a complete lack of infection prevention control measures, in most hospital wards but especially in accident emergency departments (as witnessed by my brother when my mother was brought in - not a single staff member wore gloves or washed their hands. NOT ONE).

Patients spending multiple nights on trolleys is treated as normal practice. Patients have a complete lack of privacy, dignity or basic hygiene.

None of this is acceptable!

OUR HEALTH CARE EMPLOYEES ARE…. overworked and stressed to the point of exhaustion.

Our newly qualified nurses are paid a starting wage of €14.39 (information from a friend who has nearly two years experience). Since 1 January 2017, the national minimum wage for an experienced adult employee is €9.25 per hour. This same friend has had to give up her private health insurance because she couldn’t afford it!!

The current nurse:patient ratio leaves both nurses and patients in very unsafe and dangerous situations on a constant basis.

There is a huge deficit of nursing staff in the HSE. There are recruitment events on an ongoing basis but it is a slow process.

Our Irish hospitals are unionised, heavily, but with a health service top heavy with managers and scarce on frontline staff it’s hard to see who the union is serving first.

How is any of that OK?

SOLVE IT!

I don’t want our health service employees to work less. I want more front line staff in all departments and more beds. Stop trying to recruit our Irish nurses back from overseas until you give our new nurses a decent wage. Start at home! Word will spread and they will come home without expensive recruitment campaigns.

Seriously, is it really more complicated than that????

To all the policy decision makers and implementation makers, Stop talking, start funding and start doing!

Because I can't do anything, not a single thing and it's killing me and thousands of others - YOU have to do it!