Last week, Johnson & Johnson Diabetes, who own Animas, announced that it was “exiting” out of the insulin pump business, effective immediately in the US and Canada. And eventually in the rest of the world.
Once I read all the way down the press release to realise that it was just USA and Canada for now, I was relieved.
Then I was seriously miffed, but not completely surprised. Since the Vibe insulin pump was introduced, a number of years ago, innovation seemed to have stalled within the company. Johnson & Johnson own both Animas and the glucose meter company LifeScan/OneTouch but they didn’t even innovate between these products, not even to do what all others were doing and that was to sync products via Bluetooth or whatever internet cloud magic they choose. One might even say they really checked out of the diabetes industry a long time ago by their lack of interest.
So, what does this mean for us in Ireland? And what does this mean for me an Animas Pump user?
I have been using an Animas pump since my pumping beginnings in 2010. Then in 2014, I upgraded to the Vibe and in 2015 I added the Dexcom Continuous Glucose Monitoring System (CGM) to it. I didn’t choose which insulin pump I would have, it was chosen for me, but I didn’t have any complaints. In fact, it’s been a great relationship!
Now I’m trying to think ahead and I realised that in the not too distant future I’m going to have to find a replacement for my insulin pump.
What are my choices in pumps? Do I actually have a choice, when the only other insulin pump my health service has a contract with is Medtronic? Yes it’s probably a good pump but I don’t want to be forced into it.
BUT it’s not just my pump I need to consider!
This also effects my CGM device. How will my new pump interact with my current CGM, if at all? My Dexcom receiver IS my insulin pump, meaning that my glucose sensor transmits the information straight to my pump. So I need to either get a new receiver device or change CGM’s.
And then, there’s my glucose meter which I was also able to upload to my insulin pump software programme which allows me to create useful graphs that help me make better decisions about my daily care. All of my information, from all of my devices is uploaded to the same place where I can see it all and it was easy!
Will I need to change both of these devices to make life easier?
What will the overall software platform be that I use?
I want to be able to upload/Bluetooth/cloud sync all my devices to the same place!
I want to use whatever d*** device I like best. And I really don’t like that I have to research all of this when managing diabetes is enough work already.
Renza from Diabetogenic wrote this piece on “fudging” our bg numbers in our blood glucose diaries and it fuelled my fire. It’s such a coincidence that we both attended conferences where the “Fake” blood glucose diary of a person with diabetes was held as an example of a “bad” patient! Renza’s piece is well worth a read on how she handled the situation and spoke up for all of us. She rocks!!
My experience was more of the sitting quietly at the back in disbelief that this was how this conference was beginning. The conference I attended focused on changing the way care is delivered to young adults with diabetes.
I was diagnosed as a young adult – age 20. The instant I saw that photo and heard those words I had vivid flashbacks. I remember doing that! I even remember why! I remember that every out of range blood glucose number in my diary was questioned, I felt interrogated and I never knew the answer. Back then, there was no carb counting and no one told me that if I ate more food but still took the same amount of insulin that my blood glucose levels would be higher. It wasn’t bad behaviour or poor choices – it was ignorance. I remembered being lost, feeling so isolated and not knowing anything about diabetes, let alone how to manage it. I remember that I never felt I could ask for help with my diabetes from my health care team.
I did it because I didn’t want to be judged or reprimanded for something I thought had no control over. I was letting my diabetes team down.
This conference, supposedly, about health care professionals finding a better way to deliver care but this made me feel like the reason young people with diabetes were not doing well was their own fault.
What should have been said, and said clearly, was that if a person with diabetes feels they have to hide their blood glucose numbers from their diabetes team the patient is the one being failed. That the diabetes team are to ones letting the patient down. That your reaction to people’s blood glucose diarys need some work. That the fact that a patient has actually written down their blood glucose numbers at all is an achievement to be celebrated. That you, despite your best intentions, are being judgemental.
Thankfully, these days, I am much older and wiser and more assertive these days. And of course, there’s the fact that I don’t care very much what other people think of me. I do ask for help – it’s not always available but I keep asking. I also have a team that seem to be a bit more open to conversation about what I need. But I am a little perturbed that 20+ years later, young people with diabetes STILL feel that they have to cheat to pass their diabetes test?
Oh and BTW, I ALWAYS use the same pen to write down my BG numbers cos I keep the same pen in the case with my bg meter!! So this is not an effective way to flush out or prove a diary is being faked.
How many people actually use a written diary these days not anyway? Aren’t we all uploading to software programmes or using Apps?
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.
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! 😀
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.
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.
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.
Last week was completely mental for me. Definitely not the life of a stay at home parent and way too exciting.
Wednesday, a bunch of us diabetes advocates went to Leinster House to meet with our TD’s and Senators. This is the equivalent of meeting with congress in the US, kindof. I won’t go into detail here but if you’re interested in what happened I posted about it here on Thriveabetes last Tuesday.
Thursday was the complete opposite, live moving from a developing country to a developed one. One day, I was asking government to approve the funding needed to improve our diabetes services, the next, I was in the world of research and science. Not a world I’m very comfortable in but I learned a lot about peer support and specifically this research project that Prof Sean Dinneen is leading on how to create a programme for young adults living with type 1 diabetes called D1 Now Study.
“This event was to provide a forum, lead by a diverse group of keynote speakers including Young Adult with T1D, for sharing experiences and developing ideas around the management of t1d during the challenging years of young adulthood.”
It was a jam-packed day with lots of international studies talked about from around the world about type 1 diabetes and their findings.
From The Role of Family in Supporting the Young Adult with Diabetes by Clea DeBrun Johansen from Denmark Diabetes Academy.
Among this study’s findings were that “The influence of the family continues to be very prominent during emerging adulthood, especially the college years.”
Her study also concluded that;
– Parents play an important, yet complex, role for emerging adults with type 1 diabetes.
– Parents can contribute positively to diabetes self-care and psychological well being.
– Parents can also negatively influence life with diabetes for emerging adults (absence, disinterest in diabetes, acting in a controlling manner).
Emerging adults do not want to be too dependent on their parents – they want parents to be available when needed.
Clea ended with this quote but I would argue that you can do diabetes alone but nobody wants to.
Next up was Barbara Johnson who discussed WICKED, a new diabetes education programme in Sheffield. This has to be the coolest name for diabetes education. EVER!
Workin with Insulin, Carbs, Ketones and Exercise to manage Diabetes.
Prior to developing WICKED, Sheffield realised that young adults were taking responsibility for their diabetes often when changes are happening – starting work, moving away to uni, drinking alcohol, having sex and that they may not have received education targeted at them before.
They asked for education that was relevant to them.
Will Hadfield from King’s College Hospital, London, told us about their Transition Clinics for adolescents with diabetes.
His description sounded very much like an afterschool club with peer activities organised by the patients. He also mentioned that a large number of young adults don’t want to received anything diabetes related in their social media feeds. I can understand that they want to keep at least one zone or area of their lives free of diabetes. I have some of those too.
Sarah Simkin from Jigsaw Galway gave a very enlightening talk about how their
A Service Designed by Service Users.
From the design and layout of the building to how the service would be delivered. They really adopted the “Nothing about us, without us” motto that has been circulating for a couple of years and they owned it.
Young Adults with Diabetes Panel (YAP)
Then we heard from the first of two young adults with diabetes who are involved in the D1 Now study. Monica Mullins, a student in Galway, told of how she became a member of the Young Adult Panel (YAP) and the training they received to become researchers. There was a lot of training and it does make them more effective in the research but now I feel that they have altered their typical YA with diabetes demographic, making them not so typical now. Maybe an an additional YAP is needed so that they research team learn to communicate with them.
Our second voice of diabetes, Liam McMorrow designed a survey on “Understanding Young Adults preferences for Diabetes Clinic care”. It was really interesting and I had a couple of questions about his fantastic questionnaire but there wasn’t enough time to answer many questions.
Last but not least was David Chaney who is the National Director of Diabetes UK Northern Ireland and the only other Irish person I met at the Friend for Life Diabetes Conference in America last summer.
David, with diabetes teams across Northern Ireland, developed CHOICE, (carbohydrate and insulin collaborative education). CHOICE is a structured education programme for children and young people with diabetes (aged 0-19 years) and their parents / carers.
I don’t think there is a parent of a child with diabetes in Ireland who does not know about CHOICE. David took us on the journey of how CHOICE came to be and how it has developed and adapted to meet the needs of children and young people with diabetes.
He told us that when a child is diagnosed with diabetes all the education is directed towards the parents, so when a child transitions into the adolescent and young adult service we expect them to have absorbed all that information by osmosis. Barbara Johnson earlier reinforced this point. David believes, as many of us do, that diabetes education is the cornerstone to good diabetes management.
We are kind of putting our young adults with diabetes into the driving seat of their diabetes without giving them a few lessons and a bit of theory. But, you wouldn’t put a person in the driving seat without giving them a few lessons and a bit of theory first. Then as their confidence grows the diabetes team backs away but if there whenever they are needed. CHOICE is teaching adolescents and young adults to drive their own diabetes.
David also provide The Best Slide of the conference in my opinion. “If HCPs don’t provide diabetes education, others will”
I did get a little frustrated and “irked” about half way through the conference because it was starting to feel like I was being talked about while in the room but not being included in the conversation. Maybe I needed some YAP training to fully participate? Again, it’s not a world I’m very familiar with so maybe that was it? I also wasn’t able to attend the Hackathon that followed the Conference. And I am looking forward to seeing where the research goes and how it develops.
On a personal note the stress of travelling across the country, plus trying to find “volunteers” to look after my children had left the building, along with the high blood glucose numbers:-)
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!
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.
The end of May marked six months since I got CGM’d. WOW! It just flew by.
After two years of persistence, I finally got my CGM on November 27th 2015. When I announced this on social media I has a number of queries about how I managed to get approved and how difficult others were finding their quest.
As always, the one thing that the diabetes community is brilliant at, is sharing knowledge through our personal experiences for the benefit of others. So, here is the story of how I came to have a CGM.
How did this quest begin? Well, it began with an insulin pump (and that was another long drawn out “quest”) in June 2010. I wrote about that journey here on 29th March 2011.
I use the Animas Insulin Pump and as soon as Animas announced that they were rolling out the Animas Vibe with CGM integration in the UK and Ireland, I was on it like sticky on a toddler.
My pump was due for an upgrade in 2014 as the warranty runs out at 4 years and because the pump software would not continue past January 2016. I called my Animas rep to find out how, or if there was a chance that I would get a Vibe as part of this upgrade and she said yes! Great! But wait!
Hiccup no. 1. However, between hearing this information and my next appointment at my endo’s office, my Animas rep, the only Animas employee in Ireland at that time, took a 12 month sabbatical. That combined with having only 3 visits per year to my endo doesn’t give me much of a chance to get things done. I did get my Vibe in June 2014 and immediately started chasing down how to get the CGM component.
Hiccup no. 2. My Animas rep returned from her sabbatical the following August BUT then my fabulous endocrinologist left her position at the hospital I attend! I decided to use this opportunity to migrate back into public health care for my diabetes. My children were both in primary school and it was doable to fit clinic visits during school hours. I had also heard of a clinic that was only a one hour drive away that had an insulin pump clinic and DAFNE.
Hiccup no. 3. Fifteen month waiting list!!!!!!!!!!!!!!!! Not kidding! By the time I got my referral sorted out to my new clinic and waited I had been without medical care for 11 months. I was doing fine but I was starting to get a wee bit unsettled. Thankfully, when I called to chase up my referral they squeezed me into the Type 2 diabetes clinic in April 2015 but at least I was in and on the books.
June 2015 – I set up a trial before purchase with a Dexcom CGM for two weeks and I was hooked. And now I had data, with the help of my mathematical husband, to strengthen my case for getting one permanently.
October 2015 – I presented my case and there were a couple of breakdowns in communication but the paperwork was put through to apply for funding approval from the HSE and on the 27th November I was live on a CGM permanently.
It took 17 months to complete this quest, that in the end when I had convinced my diabetes team why I wanted one took 6 weeks. Unlike an insulin pump, the training and education required before a patient goes live on a CGM is minimum.
In February 2016, an additional piece of this quest was completed and that was the reimbursement of the monthly supply of sensors which comes not from the Core List F of diabetes supplies and medications included in the Long Term Illness Scheme but on the Special Product List. See here for more information.
And that is the complicated story of how I got a CGM. My next post will focus on what I have learn about managing my diabetes by using it and how I will be taking it to the grave with me.
If you want to find out more about what is a CGM (Continuous Glucose Monitoring) device is, watch here. There are two available in Ireland at the moment; the aforementioned Dexcom (with or without the Vibe insulin pump) and the Medtronic RealTime Guardian CGM. The newer Medtronic pumps all come with CGM compatibility but you can get the CGM component without getting an insulin pump.
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.
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:-(
Today’s topic is The Healthcare Experience Most people who live with a chronic illness end up with a lot of experience when it comes to dealing with health care. How would you improve or change your healthcare experience? What would you like to see happening during medical visits with your healthcare team? How about when dealing with your health insurance companies? What’s your Healthcare Wish List or Biggest Frustration? Today is the day to share it all!
I think I’m one of those few people who has changed my diabetes healthcare team more than the average person with diabetes. My current count is 7 clinics/endos. Is that a lot? It feels like a lot!
I could tell you all the things that have been said to me that made me walk from all those clinics/endos but that’s just too depressing. Instead I am going to focus on what my ideal clinic appointment would be like.
Over the years, I have collected a few requirements that I liked from each clinic/consultant to compile my “wish list” of how I would like my appointments to go. It goes something like this;
Parking – you would think that when they built these giant hospitals, or even now that they are redeveloping them that they would build the multi storey car park first?!? I spent 40 minutes one day driving around until I got a space in a housing estate about ¼ mile away. IT’S A NIGHTMARE!!!
The Waiting Room – I recognise that not waiting at all is a bit too much to ask, so wouldn’t it be nice if the waiting room was more sociable? I mean it’s a mini-support group right there. And what if there was tea and coffee available? I drive 1 hour to my clinic – I’d kill for a cuppa! There isn’t even a vending machine at most clinics I”ve gone too.
The person who does the health checks should identify him/herself as what she is, as well as her name. Sometimes it’s a nurse, sometimes its a healthcare assistant – I would like to know.
The doctor-in-training I see next, I would like them to listen more, I know I will probably never see you again but find out more about me and learn from me. Start a personal file on me in addition to my medical file.
My endocrinologist – we will be seeing each other twice a year for a lot of years, so get to know me. My favourite consultant, who actually left me and not the other way around, always greeted me with a very firm handshake and a very hearty “How are you doing?” She actually meant it! And asked after my family. It was like being met with a hug.
Clinic visits are just so clinical. I spend so much time going through my team’s recommendations one by one, explaining why I don’t think they are going to work. I need to feel listened to. I would love to leave that building having met one or two new people in the waiting room, maybe even a friend, with a feeling of “I can do this” as I leave and have received a pat on the back NO MATTER WHAT!
NOTE: I also should point out that I am one of a minority who already has an insulin pump and a CGM. If I didn’t have either of those devices my list would MOST definitely include access to them. Some Irish diabetes clinics don’t even have insulin pump programmes or structured diabetes education and I am helping Diabetes Ireland advocate for these basic necessities.
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