Summer Music Festivals, Type 1 Diabetes and what to know?

It’s Summer and it’s also the start of music festival season. This was kicked off with GunsnRoses in Slane Castle on Saturday 27th May. We have Longitude, Electric Picnic, Castlepalooza, yet to come. You bought your tickets for the gig, sorted your transportation and accommodation, etc. One of the last things you will probably consider, if you even think of it at all, is having a plan for dealing with the restrictions placed on bringing in food and drinks to these events when you have type 1 diabetes.

I would like to thank those who posted about this topic in the private “Diabetes in Ireland” facebook group. I asked posters if they would allow me to share their experiences for the benefit of new event go-ers or new to these restrictions. In particular, Sinead Murray who emailed the event promoters information to me.

The first thing you need to know about these events is that it’s standard practice, especially the ones where there are food and drink vendors inside, that people are NOT permitted to bring Food/beverages into the event.

At the recent concert in Slane Castle, it was “Strictly NO REFRESHMENTS IN HARD CONTAINERS (cans, plastic bottles, glass) – even those containing water / non-alcoholic liquids in them.” From Slane Castle's website.

What does this mean for people with type 1 diabetes who would need to carry fast acting glucose, which may be in liquid form and carb snacks for low blood glucose emergencies?

This means that unless you have thought to make arrangements that you will most likely not be allowed to bring in bottles of Lucozade, it will be confiscated. You will need to have a backup plan. And if you want to bring your Lucozade in with you either contact the event promoters or get a doctors letter that states that you need to carry food on you at all times. Plus, it's no harm to have the letter state that this includes Lucozade for medical emergencies.

Some of the posters who shared said they either didn’t bring any hypo supplies or food with them but bought some when they got inside the venue. Another poster said that they just brought whatever they needed in a small inconspicuous bag and had no issues. Another poster had Lucozade confiscated.

The first response from Slane Castle Event promoters was that if you had a doctors letter they would allow you to bring in food but still not in hard plastic containers and certainly no Lucozade. They also said that they would accept a copy of the correspondence. Later, this was followed up by a second email with a reversal on the Lucozade stance.

I have compiled some information on going to music festival from some other websites and here are a few recommendations as a person with type 1 diabetes. (Updated since I received some new information from a member of the diabetes online community on 31-5-2017)

Get a letter from your GP Yes, I know it’s a pain in the behind but if you get one letter you may be able to use it for a number of concerts and maybe for a number of years. Make sure that your letter states your need to carry food on you at all times.

The people on security will know NOTHING about diabetes - nothing relevant anyway. Don’t judge! And definitley don't bank on security being understanding. Explain with a “kill em with kindness” attitude that your food is only for medical emergencies. As a person with type 1 diabetes your blood sugars can go low and you need to treat it with fast acting sugar.

Contact Event Promoters

This is a really good idea because you may be able to avoid getting a letter from your GP and as a bonus you are education one customer service person at a time, maybe even a whole customer service department :-O, at a time. When you contact the promoters explain why that you carry medical supplies such as needles, insulin pens and also explain that you need to carry food and fast acting glucose on your person at all times. The event promoters will most likely respond with "the rules are the rules" email. However, I encourage you to respond to this email explaining again the medical neccessity of having  food and fast acting glucose on your person at all times. At this point, the customer service person may get some outside advise and you will be exempt from the restriction.

Brush up on your Type 1 Diabetes and Alcohol knowledge

This goes without saying. Just google Alcohol and type 1 diabetes and you'll find loads of info on this.

And

Learn from the experience of others Here a couple of blog posts I found that give other useful information;

Diabetes.co.uk Festivals and Diabetes Guide

http://travelbetic.com/2016/04/06/type-1-diabetes-at-camping-music-festivals/

https://beyondtype1.org/your-type-1-guide-to-music-festivals/

Of course being of a certain vintage it’s not surprising that I had not come across this information before. I am so passed the days where I rocked out at concerts and most of what I remember was at Feile - The Trip to Tipp! (eye roll) in the 90’s.

A Diabetes Mother's Call

You might remember a while back that I posted about being part of a Diabetes Ireland delegation to attend a diabetes briefing for TD’s and Senators in Leinster House. My friends, Rebecca and Davina both gave powerful and emotional speeches to our audience about life with type 1 diabetes. I asked Rebecca if I could shared hers on Thriveabetes and she was game. Rebecca is also one of my partners in crime in organising Thriveabetes :-) Here are her words;

My name is Rebecca Flanagan, I live in Co. Clare and I have 3 daughters, the eldest of which has Type 1 Diabetes. She was diagnosed just before her 8th birthday and, at 16 years old now, has lived with this auto-immune condition for 8 years – a condition she will have for the rest of her life. This was the start of our whole family’s ‘new’ normal. This new normal for my daughter now involves a minimum of 4 finger prick blood sugar tests and a minimum of 4 insulin injections every day in order to stay alive. EVERY DAY!

Part of the new normal for our family was figuring out the insulin dose based on the amount of carbohydrates she would be eating, but it’s not a perfect science and so many variables can contribute to her care. Additional testing may be required for stressful times, like the students taking exams right now; anxiety, exercise, sickness. As parents we became our child’s nurse and doctor, hoping we had been given the proper training to keep our child healthy.

Time off work must be organized to attend hospital appointments, schools must be cooperative, and her siblings sometimes have to take a back seat. Middle of the night blood sugar tests often have to be done. There are times that the whole family becomes exhausted and burnt out.

But I know I’m not alone in this life with type 1 diabetes. There are about 3,000 families in Ireland trying to manage this balancing act with a type 1 child in Ireland. Some children are only babies at diagnosis – imagine trying to count the carbohydrates and a correct insulin dose for an infant, when it’s hard to tell how much even makes it past their mouth. Imagine trying to get a toddler to finish their dinner because they already had their insulin, and if they don’t they are in danger of having a hypo (or a low blood sugar, the consequences of which can lead to a coma or even death). Imagine having to come in to your child’s school every day at lunch, as I did, to administer their insulin injection because the school has no resources to support this. And then imagine hoping that they finished all of their lunch and maybe not run around TOO much at break, for fear of a hypo.

Now imagine the teenage years when they just don’t want to deal with it anymore – when they long to be like normal teenagers and not worry about testing all the time and taking insulin before having a quick ice cream with friends. Imagine their worries and fears for the future – my teenager shouldn’t have to worry about whether or not her life expectancy will be shortened, or complications like blindness or liver failure, or how difficult it might be to have a healthy pregnancy in the future.

These are all realities for families with type 1 children. Parents worry whether they are doing it all right whilst dealing with the public perception amongst those who just DON’T KNOW the difference between type 1 and type 2 diabetes. We are constantly defending and educating, constantly worrying. Worrying about complications, worrying about negative relationships with food (eating means testing means injecting), worrying about things like diabulimia – when teenagers stop taking their insulin in order to lose weight. There’s just so much worry.

There’s only so much that we, as parents, can do. We need the support of well trained and well-staffed clinical teams. Every family, regardless of location, should have quarterly hospital appointments with a paediatric endocrinologist, nurse specialist, dietician and psychological support service. Some children, my daughter included, are currently attending clinics with NO endocrinologist. Transitional clinics for teenagers which include psychological support are majorly needed.

The research has been completed. The Model of Care for all Children and Young People with Type 1 Diabetes was published in December 2015. It is time to get the funding in place to secure the basic medical staff requirements and get this system on track. The technologies available for the treatment of type 1 diabetes should also be available to all children – my daughter has lived with type 1 diabetes for 8 years and we are no closer to obtaining an insulin pump for her - they should be available to any family willing to put the work in.

Adequate staff and patient training now will reduce the long term impact on the health service by minimizing the potential for complications in adulthood. My daughter and all the other type 1 children will be using the health service for life, and we need up front support now so that they do not become a statistic of complications such as blindness and amputations.

I am asking for all the TDs in attendance today to please push for the Model of Care staff requirements to be filled and work towards all of the recommendations made in this document. The strategy is in place but the funding needs to follow NOW. Please support our families and push for funding to be utilised effectively. Our children did nothing to deserve this illness but they deserve adequate treatment and care from the health service on a nationwide level.

Thank you Rebecca for sharing your speech. And thanks to both Davina & Rebecca for explaining, so well, what living with type 1 diabetes is really like.

Our first request from our TD's was that 0.4% (€5m) of the health service's annual spend on diabetes (€1.3 billion this year) be re-directed towards funding the paediatric diabetes strategy, so that huge financial savings from preventing diabetes related complications would be accrued in future years.

But then! We asked for a multi-year health strategy with cross-party agreement for adults with diabetes. The National Programme for Diabetes Team have come up with this strategy but the need government to approve the funding to deliver this plan!

Diabetes is costing the government €1.3 billion this year and over €800 million of that will be spent on dealing with the complications of diabetes. We can reduce the amount spent on complications each year by directing the financial savings that the HSE has made, in the recent years by working with the diabetes community, in reducing the cost of diabetes medications and devices. We need those savings reallocated to providing the manpower resources to cope with the rising numbers and to encourage more effective daily management and better health outcomes.

So what's next? Well, we can try to use every opportunity to remind our TD's why we need this. We need it because those of us who do not have diabetic complications want to stay that way for as long as possible. We need support from our medical teams to maintain that journey. Those of us who already have complications need the support of a complete medical team to minimise the damage of those complications.