There are lots of people on social media doing their bit for diabetes awareness, and this is fantastic. However, raising awareness seems to be a big buzzword these days, but what does that really mean, and how do we raise awareness of something effectively? Should I do it by sharing a random image on my Facebook feed that doesn’t tell any of my friends anything at all? Or should I use my social media to share information?
In this post, I will provide a short summary of the information revealed from parliamentary question responses on how many people in Ireland use insulin pumps, what clinics provide them as a treatment option and how many new pump starts are done each year.
My diabetes diagnosis shattered my confidence in my ability to take care of myself, and my plan quickly became to just get through the rest of the term, move home for the summer to my previous summer job and figure the rest out over the summer. Adjusting to my new normal of living with diabetes began while I was still in hospital, or did it?
I realised last year that in all the blog posts I’d done these last 13 years, I have never shared my diagnosis story, so here it goes. My diabetes diagnosis is not unique; many of my friends with diabetes share similar experiences; however, some people end up very ill and may have spent time in intensive care units in hospitals. Thankfully this was not the case for me, but I did feel like I was dying.
The purpose of the document is to provide an estimate of the number of people who are using HSE-funded Flash and CGMs in Ireland and to prompt a discussion around access equality. I believe we need to talk about how fair it is that so many are approved for HSE funding and why some people are still being made to pay.
My children are finished school for the summer which means I don’t have as much time to myself as normal. I won’t be posting regularly over the next 6-8 weeks. But I will be back in September fully charged.
I want to thank you all for following the “Diabetes People” blog via FaceBook & Twitter. I know that there are so many Diabetes Blogs out there to keep people entertained and I wanted to thank all of you who value this one too.
I hope you all have a good summer and stay healthy.
In May, the Type 1 Diabetes Group in Clare discussed helpful tips when you are travelling. The following is a combination of tips from the Diabetes Australia and from the American Diabetes Association.
1. Carry a letter from your doctor stating your full name, address and date of birth, that you have diabetes and then listing the medications, insulin delivery devices (syringes, insulin pens or pumps) which you use and blood glucose testing equipment you use, and stating that you must be allowed to carry these with you at all times. Tip added by group; Make several copies of this letter and stash them everywhere.
2. Customs or Security Gates. If questioned about syringes or other diabetes equipment which you are carrying, stay calm, simply state that you have diabetes and explain what the devices are. Show the person the letter from your doctor. The Federal Aviation Authority trains all security staff in what people with diabetes must be allowed to carry. There is no need to ‘declare’ your supplies on domestic or international flights as they are entirely permitted.
3. Take a spare prescription. Always take prescriptions for all medications which you need, and which you are carrying with you. This will both assist you to get more supplies if needed, and reassure security officers that the medications are your own.
4. Bring plenty, if not double, the amount of diabetes supplies that you will need. Sometimes extreme climates can damage test strips and insulin, or if you get delayed at your destination on your way home (remember the ash cloud). It’s always wise to have some spares.
5. When flying carry all your diabetes supplies in your hand luggage. It can be difficult, though not impossible, to obtain all your diabetes supplies away from home if they are lost. Best to keep them close to hand so you don’t have to waste precious time traipsing around an unknown city.
6. Replacing lost supplies. If you do find yourself in this predicament, start with a major hospital’s emergency room which should be able to supply enough to get you through. Alternatively, phone the diabetes organisation where you are and ask someone to explain how you obtain diabetes supplies in their state/country. If heading overseas, you can find out contact details for the local organisation in advance by visiting the International Diabetes Federation’s website: www.idf.org
7. Wear ID. Make sure you have some form of identification which says that you have diabetes such as a Medicalert bracelet, on you, especially if traveling alone.
8. No need to request ‘diabetic’ meals on planes.
9. Always pack hypo supplies & Carb snacks - especially on long flights. Also, don’t be afraid to ask the flight attendant for a lemonade or extra food if you need it to treat a hypo.
10. Get Travel Insurance! It may seem like just another wad of euros which your travel agent is trying to extract from you but if only for your and your family’s peace of mind it could be the best investment you ever make. Make sure your insurance policy covers your diabetes. Some policies may exclude cover for long term medical conditions.
11. If you are travelling across time zones talk to your diabetes team about how to administer your insulin on the days that you travel and what to do once you arrive.
12. Don’t forget extra batteries for your meter.
“Special considerations for amusement parks from the JDRF website.
If you are taking a child with type 1 diabetes to a major amusement park like Disney World/Land, the first thing you should do when you arrive is go to the guest relations office. Explain to the staff that your child has type 1 diabetes and must eat, check blood sugars, and/or take shots at specific times. Some of them will give you a pass that will get your family in the handicapped line for most rides, which will drastically cut the amount of time you will have to wait in lines. Bring a backpack with snacks, juices, water, and all your type 1 diabetes supplies. You may also want to pack meters and insulin pumps in waterproof bags so they don't get wet on water rides. If your child is relatively young, you can also rent a stroller for the day and stash supplies in there.
Many parents also suggest making reservations for sit-down meals at amusement park restaurants before leaving for your trip.”
A little bit of planning goes a long way towards a stress free and well earned holiday.
Most children and adolescents with diabetes have Type 1 Diabetes. This is an autoimmune disease, which means that for no apparent reason a child’s immune system decided to turn on it and destroy a crucial part of the body. In the case of Type 1 diabetes the immune system attacked the cells that make insulin. Insulin is needed to convert the food we eat into the energy we need to exist. The food, in particular the carbohydrate, we eat is converted into glucose and if the glucose isn’t converted into energy it poisons the body and eventually causes all sorts of organ failure and if untreated death.
Children and young people with Type 1 Diabetes must take insulin in the form of multiple daily injections and must test their blood glucose at least 4 times a day. They must attend outpatient clinics 4 – 5 times a year to monitor their diabetes. These children do attend their hospital appointments regionally however due to lack of resources to offer new treatments that control blood sugar and insulin levels about 50% are referred to the Paediatric Diabetes centres in Dublin, where services are inundated with referrals from children and adolescents with diabetes from the rest of Ireland.
To tackle this Diabetes Action is seeking the reorganisation of existing paediatric diabetes services so that up to date specialist care can be provided equally. The cost of this reorganisation is €750,000 but international studies have shown that improved control of diabetes in children and adolescents can lessen the development of costly complication in adulthood by as much at 76%.
“At present 50% of children and adolescents with diabetes develop some form of long term diabetes complication by the time they are adults. We can dramatically improve health outcomes and quality of life with a very modest investment and a reorganisation of services” says Prof. Hillary Hoey, leading paediatric endocrinologist.
Diabetes Action is asking all people with diabetes to log onto their website http://www.diabetesaction.ie/ and support this campaign for better services for children and young people with diabetes by sending an email to their local TD’s and senators to make representations to the HSE and to the Minister for Health seeking a reorganisation of services.
Diabetes Action asks that if you want to support this campaign but do not have access to the internet that you ask a family member or friend for help or visit the local library.
As of 17th June 2011, 1,200 people have used the advocacy web-site http://www.diabetesaction.ie/ to send over e-mail representations to TDs and Senators in the Oireachtas.
Children and adolescents with diabetes deserve services which will support them to lead a normal and productive life and without future ill health.
Log onto www.diabetesaction.ie now!!!
These comments don’t bother me all that much when it’s face to face because I can take the time to explain what Type 1 Diabetes is. But when comments like that come from people who in my opinion should know better, then, I lose it and have to be quarantined before I can be with people again.
For instance, I sent an email to a public representative highlighting a campaign to get better health services for Type 1 diabetes. In my email any time I used the word “diabetes” it was accompanied by Type 1. However, the reply talked only about Type 2 diabetes and what a “scourge” it was, requiring me to send another email to said TD.
In the same week, I had to fill out one of those forms for mortgage protection insurance. You know the out-dated form that asks ridiculous questions such as “How often do you test your blood or urine for sugar?” What? “Is sugar present, often, occasionally or never?” Double what!!! Sugar is always present in blood. Who in-the-name-of-God tests their urine for sugar anymore? I mean it is useless information in today’s world. Yes, before 1985 when there were no Blood Glucose monitors we tested urine for sugar!
Please give sample readings for the last three months (with a small box for the answer). All of my readings would take about three pages for the last three months.
COME ON!!!!!!!!!!!!!!!!!!!!!!!!! One step forward and two steps back.
Is it any wonder that I feel like we are losing the fight to educate people about diabetes and make people more aware of it; never mind that there are two types and what those types are? How will we get people to support us in our quest for better health care services if they don’t even know what diabetes is? Things need to change – I just don’t know what to do to change them!
The more we know about diabetes; the better equipped we are to manage it well. New treatments are being introduced all of the time on how to improve our diabetes control.
Diabetes is a disease for life and it changes as we go through our different life cycles. Therefore, Type 1 Diabetes is lifelong learning – we should always be on the lookout for more information.
Those of us who have been around the Diabetes life for more than 10 years will remember switching from the twice daily injections to the multiple daily injections (MDI) and how the way we managed diabetes changed (and our way of thinking about it) but some of us fell through the cracks and weren’t informed that with MDI we could be more flexible with the timing of our meals and snacks or that if our blood sugars were high we could take and extra shot. So staying on top of the newest information should be a priority for people with type 1 Diabetes, we don’t have to follow it but at least know about it.
So Type 1 Diabetes Education in Ireland; what’s out there?
Initially, our Type 1 Diabetes education starts with the Diabetes Nurse Specialist, and we usually see her/him at our clinic appointments or when we have been admitted to hospital at diagnosis. Most of our information about managing Type 1 Diabetes in the real world comes from this person. We might also receive some Type 1 Diabetes education from a specialist dietician and maybe we have taken home some brochures and booklets to read in our own time. These booklets are usually very general and don’t provide enough information once you have absorbed the basics.
Presently, there is one structured education programme for Adults with Type 1 Diabetes called DAFNE (Dose Adjustment for Normal Eating). “DAFNE is a way of managing Type 1 diabetes and provides people with the skills necessary to estimate the carbohydrate in each meal and to inject the right dose of insulin.”
There are 6 centres in the republic of Ireland who provide DAFNE and you have to be a patient in the Diabetes out-patient clinic of that centre to access DAFNE.
So, where do the rest of us go to get that important knowledge about Type 1 Diabetes from?
Well most of the people I meet go to the internet and spend a lot of time going through different websites. Some look for books on Type 1 diabetes, of which there are many. Some look to people who are in the same boat and want to have person to person contact – this is available if you live in an area that has a support group available (Ennis, Co. Clare would be one of those places, so to would Cork City, and Dublin and more). Most of these groups are organised by volunteers and the Diabetes Federation of Ireland would have contact details for these.
Maybe others listen to advice from people who do not have diabetes or maybe find magazines with good information?
Where do you go to stay informed? Or do you think that it’s not that important to try and find other sources of information for Type 1 Diabetes?
I would love to have you post comments about this and hear other people’s opinions.
