Empowerment and Diabetes - My Journey

Last May, I was asked by the organisers of the Future Health Summit to give a presentation on how I became an empowered person with diabetes. Some friends asked if I could blog about it. The reason for my topic choice was because the theme of the conference was Empowering the Patient, Information, Choice & Accountability and I decided to focus on Empowering the Patient element for my presentation. I feel like I am one, that diabetes does not have power over me, I have a lot of power over it.

The journey towards being an empowered patient didn’t happen overnight, for me. I would like to think that a person with diabetes diagnosed today would find empowerment much quicker than I did. But the two core elements that were pivotal in my journey didn’t really exist when I was diagnosed. Those elements were Diabetes Education & Support.

Obviously my Journey Began with diagnosis 23 years ago - 1993. Diabetes Education was extremely basic in Ireland back then, if it existed at all!

My diabetes management involved;

• Injecting a fixed amount of insulin twice every day

• Eating the same amount of food at the same time every day

• Checking Blood Glucose levels just twice every day

• And I was taught How to recognise & treat a hypo

For those first 6 years I felt like I blindly coasted through my diabetes care. I did what I was asked to but I had no idea why I was doing any of it, except to stay alive.

So what changed? What prompted me to get on the bus to empowerment?

This is going to sound corny but it was love. In 1999, I met this bloke.

Phil

This is Phil. We weren’t going out very long but he already had notions about our relationship and we weren’t going out for very long when he asked me for books or leaflets where he could learn more about helping me manage my diabetes. I was stunned! And for three reasons;

• He was the first person I met who didn’t expect me to educate him on something I barely knew myself.

• That the relationship was moving a bit faster than I had thought and

• that I had nothing, absolutely nothing to give him when it came to information.

What I did have was access to the internet at work. So the next day, during my lunch break, I “AltaVista’d” type 1 diabetes. If you don’t know what AltaVista is, google it! :-D

I couldn’t believe what I found - the list of websites containing information was so long. I found all of these organisations with websites that had tonnes of practical information such as the Joslin Diabetes Centre and the world’s leading research organisation, the JRDF. I had never heard of these places before.

I started reading all of this information before handing it over to Phil and it got me thinking that there might be a better way to live with diabetes. But that thinking got shelved for a while as this journey is not an express route and it required a couple of transfers to reach my destination.

1st Transfer–Diabetes Education

You’ll be happy to know that I, very quickly, realised Phil was a keeper and by 2003, we had been married a couple of years, had moved to US and we were thinking about starting a family. As soon as my endocrinologist heard this he marched me off to a dietitian to learn about counting carbohydrates, insulin dose adjustment and sliding scales.

I had been diagnosed 10 years by the time I found diabetes education which now seems too long. But this knowledge gave me some of the control over this thing called diabetes for the first time. And I felt supported; supported by my diabetes team and supported with knowledge. I didn’t realised it then but my diabetes team in the US was the first I experience of patient centred care.

Family 1

family 2

2nd Transfer–Diabetes Peer Support

The 2nd transfer on my journey towards empowerment was finding peer support.

By 2007, we had moved back to Ireland, had our second baby and I was increasingly frustrated and unhappy with the diabetes care I was receiving. In June of that year I found myself at my lowest point after leaving the most humiliating diabetes appointment I’ve ever experienced. But it propelled me into action. I knew there had to be someone out there who would make me feel listened to.

I went home and remembered a recent newspaper article about a new branch of Diabetes Ireland being set up in Clare. I called the number in the piece and the lady who answered was a fellow person with type 1 diabetes. What are the odds? She had had her second baby around the same time as I had and we were both new to Clare. We instantly connected and during the course of that conversation we realised that we both wanted to meet more people like us and to do this was to set up diabetes support groups.

By the end of 2007, we had diabetes support groups and they continue to be a source of information, motivation and inspiration for me. And they, with some information from Diabetes Ireland helped me find a diabetes team that works amazing for me.

support group

Destination Reached - Person Empowered

This is where I feel my journey towards empowerment was completed. I had reached my destination.

Yes, I took the scenic route to being an empowered person with diabetes. An empowered person with diabetes who can drive her own diabetes. And I became that by finding two very simple, very basic diabetes resources but yet they are not accessible to everyone with diabetes in Ireland.

The first necessity is Diabetes education is as important as giving someone who wants to drive a car lesson and some theory. Would you really put a beginner in the driving seat of a car without it? And not just structured diabetes Education, like the university style of lectures. This education has to be an ongoing 2-way conversational style of learning, where a person with diabetes can grow in confidence, drive their own diabetes and the instructor takes more of a back seat each time.

The second is Diabetes Support and for me that comes from three sources;

• At home - I may be the person with diabetes but my whole family lives with it. The more supported I am at home the more successful I will be in my diabetes management.

• My Diabetes team - My journey has taught me that I need a health care team who listens to me, acknowledges all that I do to manage my care and doesn’t just focus my failings. A team that continues to teach me and a team that continues to learn.

• My diabetes Peers – the most undervalued, underused resource available for people with diabetes today. Who else knows what it’s like to live with diabetes than other people with it. We learn so much from sharing our experiences, so much that can’t be taught in a hospital appointment.

So while my journey towards empowerment has been completed, my life with diabetes journey still continues. And I hope to continue that journey for many, many decades.

Diabetes Summit Review

I had so much to write about from the Future Health Summit on Friday 27th May last that I had to divide it into two post.

Disclaimer: The organisers of this conference reimbursed me for my travel expenses to attend as a patient speaker. But all opinions are my own.

Here is my review of the Diabetes Summit Event which was chaired by Dr. Ronan Canavan, co-chaired by Anna Clarke from Diabetes Ireland with our panel being chaired by Dr. Eva Orsmond. This was the event that I spoke at. I was last up on the agenda. I have to tell ye, I think I have the bug. Even though, I seriously thought I would need medical assistance because my heart was pounding so hard while I was waiting to go up, once I got up there – I had a ball!

The summit began with Dr. Ronan Canavan, outgoing Clinical lead of the National Clinical Programme for Diabetes and Consultant Endocrinologist, and an overview of what the Diabetes National Clinical Programme has accomplished under his leadership. This included the National Diabetes Podiatry Programme, the establishment of The Diabetic Retina Screening Service, the Type 2 Diabetes Cycle of Care, which we are seeing happening now, the publication of the Paediatric Model of Care for all Children with diabetes and the forthcoming Model of Care document for Adults with diabetes.

Professor Gerald Tomkin gave a wonderful presentation about something very medical but did not fail to be extremely amusing. Actually I giggled a lot! I should add that this conference was primarily attended by healthcare professionals and patients were in the minority.

Dr Neil Black, talked about the reforms that his team have made in Diabetes West, which is not Ireland West but Northern Ireland west.  They have made some very seemingly small but significant changes. They're approach is to identify the problems in the diabetes service from the patient's perspective. Some changes were easy, such as changing the name of the diabetes clinic to diabetes support service - it sounds so much more caring. They have also streamlined the pathway to receiving care so that the people who need more support have more access and the people who are in a good place can step back until they need a check in.

Prof Philip Home-Professor of Diabetes Medicine, Newcastle University. Former Chairman of the International Diabetes Federation (Europe). In 2009 he was Programme Chair for the IDF World Diabetes Congress in Montreal spoke about medications for lowering blood glucose. Again, another well seasoned presenter and charming gentleman but well above my head. 

Dr Richard Lee Kin-Specialist Periodontist and founder of the Mint Clinic in Adelaide Rd., Dublin 2, pointed out why dental hygiene is so important for people with diabetes. He also inform us that people with diabetes can get two dental exams for free every year. I'm hoping to have more information on this about where you can download the form to apply in advance, if you are a PAYE contributor. It's more straightforward if you have a medical card, see more information from Citizen's Information.

Then there was me and my scenic journey to becoming an empowered patient, or as I would rather put it "my own best advocate".

Once everyone has presented, we concluded the summit with a panel discussion where Dr. Eva Orsmond and members of the audience had to opportunity to question us. Things got a little tense for a moment or two during this questioning, but thanks to Anna Clarke the tension was alleviated.

All in all it was not your average day in the office. It was lively, informative and I'm very glad I had the opportunity to participate and attend.

Future Health Summit Review

I have so much to share from the Future Health Summit last Friday I really don’t know where to start. So. Much. To. Write. It was very much an honour to have the opportunity to attend and to get a glimpse into the health care professionals' world and to have access to a diverse range of AM-azing speakers from all areas of health. Friday morning, I arrived in, what I thought, was plenty of time to browse the exhibits but due to a minor mix up in the timetable I lost forty five minutes of that time. I met some really interesting people though, who do some very important work and some very interesting delegates.

The first part of my day was spent attending the Diabetes Ireland workshop, which was consolidated with the ARCH workshop.

I have to say that I feel a new & engaging phase of diabetes patient conferences evolving. The diabetes conferences that I had been going to in Ireland were stale for me. They were very much medically driven and about getting to know the basics. They were not at all engaging, or very seldom and I wasn’t learning anything new at them so I stopped going.

In 2014, I had my first experience of what a patient conference could be when I went to my first diabetes conference where the speakers really, I mean really, engaged with their audience. It was almost like we were at a Baptist church service and I just wanted to stand up and sing “Halleluia”! I called these guys and gals Diabetes Rock Stars. And these guys blog, have websites, run organisations and are well known in the diabetes world. You know who I’m talking about because we are bringing a small number of them to Thriveabetes.

But in recent months, as I do more and more blogging and advocating and learning and meeting new diabetes people I’m beginning to realise that we are growing our own crop of Diabetes Rock Stars right here in Ireland. I can see it happening and it’s so exciting. The two I will mention today are Diabetes Ireland's very own, Anna Clarke and Kate Gajewska (no she's not Irish born but we are keeping her:-)

Kate's "Top 10 Tips for living with Diabetes"

Kate presented her "Top 10 Tips for living with Diabetes". But they weren’t what you might have assumed they were. She told us not to forget to live and play, that diabetes is part of our lives - don't let it become our whole lives. Become an expert in diabetes - find out what it is, how insulin works, how carbohydrate is absorbed - there is nothing as empowering as knowledge. They are just a couple of the gems she shared. And she told us her diabetes story of growing up in Poland and how her parents bought her first blood glucose meter when they first came out and then they bought her first pump. How expensive they were but that her parents know how much a difference they would make in her life. I hope to have more information about Kate in the coming months on the Thriveabetes blog.

Anna's " What to expect from you annual diabetes clinic appointment"

Anna Clarke gave us her version of what to expect from you annual diabetes clinic appointment. It was clear that Anna knew most of the people with diabetes in the room had type 1 and I think she also knew some of us personally. She delivered a talk that was specific to us. Us, who have been around the diabetes block for a while and do our homework for our appointments. So, she told us that we should not be afraid to speak up at our appointments, especially if we don’t feel listened to. That, even if our doctors and nurses don’t see us as equals, we should still see them as ours. And to focus on getting more time with our Diabetes Nurse Specialists rather than our Endocrinologists.

Shane O'Donnell & The ARCH Workshop

Next up was the ARCH workshop which was extremely interesting and gave me a little introductions to sociology presented by Dr. Shane O'Donnell was presenting it with his colleague, Dr Maria Quinlan.

ARCH is the Applied Research for Connected Health, and "is at the centre of an unparalleled connected health education and research infrastructure that spans a range of activities from gathering, analysing and interpreting data, through the development of new knowledge and care models to implementing and evaluating change."

Shane, you might remember from a previous post, is Ireland's representative on the International Diabetes Federation’s Young Leader in Diabetes Programme. And even though he had written a piece for Thriveabetes, which you can have a read of here - we had yet to meet. Cool Bananas! Box ticked!

I know that I’ve come across a couple more Irish people in diabetes who qualify as "Rock Stars" - but I thought I would just give you a little flava.

We had a quick break for lunch. And then my afternoon was spent attending the Diabetes Summit, where I was presenting. I have to tell ye, I think I have the bug. TBC This post is long enough:-)

Apologies for the lack of photo, I really need to upgrade my phone:-(

Diabetes Summit & Future Health Summit Dublin

I am extremely honoured to have been selected as a patient speaker at the upcoming Diabetes Summit which is part of the Future Health Summit on Friday 27th May. The Future Health Summit runs over two days, May 26th and 27th, in Dublin’s Citywest Convention Centre. The Future Health Summit is actually a series of 15 separate summits covering areas such as mental health, medtech, oncology, wellbeing at work, clinical leadership, diabetes, ehealth, and homecare.

The Summit director David Neville expects 1,500 delegates to attend. There are seven patient forums, more than 100 speakers, over 120 exhibitors, and 15 separate summits being run. He also says “The conference is focused on how we care, what we eat and how we live”.

I will be participating in the Diabetes Summit, which is chaired by the Clinical lead of the National Clinical Programme for Diabetes and Consultant Endocrinologist, Dr. Ronan Canavan and co-chaired by Dr. Anna Clarke, Health Promotion and Research Manager with the Diabetes Ireland.

My fellow panel will include;

Dr Neil Black, Endocrinology & Diabetes Physician, and Lead Clinician, Electronic Care Record Implementation in Northern Ireland.

Prof Philip Home-Professor of Diabetes Medicine, Newcastle University. Former Chairman of the International Diabetes Federation (Europe). In 2009 he was Programme Chair for the IDF World Diabetes Congress in Montreal.

Professor Gerald Tomkin - Director of the Diabetes Institute of Ireland at Beacon & Endocrinologist, former president of the Irish Endocrine Society, the Irish Hyperlipidaemia assoc.s. Former Chairman, and now President of the Diabetes Federation of Ireland.

Dr Richard Lee Kin-Specialist Periodontist. He is founder of the Mint Clinic in Adelaide Rd., Dublin 2, dealing exclusively with the management and treatment of gum disease in adults and children .

And of course, me, Grainne Flynn-Patient Speaker.

With a panel discussion with all speakers chaired by Dr Eva Orsmond and Prof. Donal O'Shea.  No intro explanation needed for either of those. There is more information on the schedule.

Patient Workshops

There are also patient workshops taking place on Friday 27th May, one in particular of interest is the “Living with Diabetes- Personal Empowerment, Information, Choice and Ownership”. Speakers for this workshop include;

11.15 am  – “Living Well with Diabetes, A Personal Experience  – 10 Keys Tips”. Kate Gajewska who is a health psychologist, lives with type 1 diabetes and is a scholar in Population Health & Health Service Research – SPHeRE Programme

12.00     “Making Best Use of Your Professional Diabetes Review”  Prof. Seamus Sreenan, Consultant Endocrinologist at Connolly Hospital and Medical Director of Diabetes Ireland.

Professor Seamus Sreenan will advise individuals to better prepare for their hospital appointments and maximise the benefit of that appointment for the person with diabetes.  Professor  Sreenan is Clinical Director, 3U Partnership, Consultant Endocrinologist at Connolly Hospital and Medical Director of Diabetes Ireland.

Both presentations will be followed by a question and answer session.

When you book this event, your ticket gives you access to the open talks at the Summit  (tickets priced at €539). Admission to the workshop is €10 registration fee for members, or €40 to include 2016 membership of Diabetes Ireland. To register call  Diabetes Ireland on  1850 909 909.

Now I have to take care of a "Procrastination Monkey" by rounding up the "Panic Monster". This very entertaining video will explain more:-)