Children with Diabetes Update on Services

On June 22nd last year, almost one year ago, I was part of a delegation representing people with diabetes which attended a briefing in Leinster House on the state of diabetes services then. You can read more about what this briefing entailed here. I suppose at this point I should warn you all that there is a bit of a rant coming. Sorry! Usually on the Thriveabetes blog, I try to avoid ranting and I also try to avoid making people feel more helpless and frustrated than they already are by proposing a call to action. But I have failed miserably on both counts here.

THE BACKGROUND TO THIS POST IN A NUTSHELL

At this meeting, we (we being; people living with type 1 diabetes, the Clinical Leads HSE’s National Diabetes Clinical Programme and Diabetes Ireland) asked our TD’s and Senators to commit to providing an additional €5 million per year to implement the Standard of Care document for Children with Diabetes in Ireland.

The Paediatric Diabetes Standard of Care document was published in December 2015 (that's 18 months ago). And it’s a good plan. It’s also good to have a document that would hold the health service accountable on what should be provided to all children living with type 1 diabetes in Ireland.

“The Model of Care document essentially set out a blueprint for the development of a quality paediatric Type 1 diabetes service that was to put children and their family at the centre of their care plan i.e. patient centred as per HSE policy. The proposed model of care included the setting up of Integrated Practice Units, on a regional basis, with a Centre of Excellence supporting outreach centres and identified the staffing required to deliver high quality care and the current gap analysis. Centres of Excellence were to be based in Cork, Waterford, Limerick, Galway, Sligo, Drogheda and Dublin providing support to a number of local outreach centres.” from Diabetes Ireland.

THE UPDATE

So what’s been happening with this since the 22nd June 2016? Nothing! Or maybe it appears that nothing has as there has been no communication from anyone that would indicate otherwise.

Last month, Diabetes Ireland hosted a focus group to provide an opportunity for parents of children with Type 1 Diabetes to have their say on the development of the National Paediatric Diabetes Standards of Care. This is great! Both the health service and Diabetes Ireland have realised that they were missing one very crucial component in creating a standard of care for children with type 1 diabetes - the service users. I would have thought that this feedback would have been useful before the document was published but I’m not going to complain as it’s better late than never.

I do hope that this collaboration continues in some form of Parents Advisory Council. I think it would be beneficial for our children, our parents, the team at the HSE’s National Clinical Programme for Diabetes and for Diabetes Ireland, if we had a group of parent representatives just like the UK’s Families with Diabetes National Network. This group was instumental in getting the NICE guidelines for diabetes put in place in the UK.

BUT, before the meeting of this focus group took place, this Diabetes Ireland press release was published “Paediatric Type 1 Diabetes Model of Care Failing Due to Lack of Commitment” highlighting three posts in Paediatric Diabetes which have remained vacant for over two years despite the funding for those posts being available.

– "In Waterford, the vacant Consultant post there was advertised last year and we have to wait over 6 months for interviews to be held and possibly up to a further year for the post to be filled.

– Following the transfer of a Consultant from Sligo Hospital to Limerick University Hospital, nothing is being done to date to recruit a replacement in Sligo.

– In Galway University Hospital, we are waiting for interviews to take place for the vacant Consultant post there which was recently re-advertised following the withdrawal of a successful candidate who was returning from abroad and who had accepted the post in 2015 and was due to start in 2017. (I think this one upsets me the most because Galway patients were counting down the days to March 2017 and then to be crushed like this).

"Parents of children who attend these three centres are concerned about the care of their children. More and more of these parents are trying to transfer their children to the Dublin Hospitals, all of which already have caseloads way in excess of what they can deal with”.

One step forward, two steps back!

WHAT’S NEXT?

To be honest, I haven’t emailed any of my local TD’s yet to make representation to the Minister for Health to fill these posts URGENTLY and to look for further posts in 2017 to fully implement the Model of Care because I’m still a lot angry that we are in a worse situation than before! All my hope and optimism that this standard of care would move forward has just evaporated.

Do I give up? Do you give up? How can we? We can’t!!! I can't! We just can’t because it’s children.

And I am reminded of yesterdays children with diabetes who grown up in a service that wasn't good enough then and certainly isn't good enough now. My friend, AineMae who was diagnosed with type 1 diabetes as a child only two decades ago. She lost her sight at 26, is now in her 30’s and has been on the kidney/pancreas transplant list for well over two years. Read more about AineMae here.

Another two personal friends diagnosed with type 1 diabetes as children; one is already on that list and one is a hair’s breadth away from the kidney transplant list. And there are many more people who I know only by interactions on the diabetes online community in the same situation.

These were the children with type 1 diabetes of yesterday. And they were failed. The children with type 1 diabetes of today deserve better. And so, I will, once again, take a deep breath, email my TD’s and try to be a bit nicer than I want to be.

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.

What was the Surf like?

THRIVEABETES SUGAR SURFING WORKSHOP - A review by Gráinne Flynn

Over one hundred people from all over Ireland and the world, attended the Thriveabetes Sugar Surfing Workshop on Saturday, May 13th in Dublin presented by Dr Stephen Ponder, who is a consultant endocrinologist from Texas. Dr. Ponder is co-author, with Kevin McMahon, of “Sugar Surfing; How to manage Type 1 Diabetes in a Modern World” and has lived with the condition himself for over 50 years.

It was really challenging to put this review together because my head was bursting with the massive amount of information it was trying to process. The feedback we got from the evaluation forms was something we are not used to; as in almost 100% positive!! People were so hungry for the information and it was devoured ravenously. Myself included. I realised very quickly that I needed to stop tweeting and just focus on taking notes and photos of Stephen’s slides.

P.S. If you did attend Sugar Surfing you might like to test your knowledge through this Pop Quiz.

SO, HOW DID SUGAR SURFING COME TO BE?

In recent years, continuous glucose monitoring devices have become more accurate, more reliable and gaining popularity in the diabetes community. This increase in use has lead to the need for an “instruction manual” for people to get the best out of them. Dr. Ponder says that it’s important for people to know that he doesn’t manage anyone's diabetes but what he does is give people the skills and the knowledge to manage their own diabetes.

Sugar Surfing is a phrase that Dr. Ponder coined while creating his workshops. He calls it “working the trend line”. The Sugar Surfing method includes elements of combining insulin action with food action. This means figuring out how long it takes for your insulin dose to start working and timing that with how long it takes for the food you have eaten to start affecting your blood glucose levels. It also means studying how different types of meals affect your blood glucose levels and designing an insulin dose or micro-doses to minimise the spikes. Dr Ponder says the a lot of what our HbA1c’s reflects can be found after we eat.

For decades, we have been noting what our blood sugars are before a meal and maybe two hours after a meal. The Sugar Surfing workshop has taught me that I need to pay attention to what’s happening from the time I take my insulin to when the food is finished processing and sometimes in the case of high fat, high protein or high carb meals that could take beyond 4 hours. Not all the time but enough of the time to master the meals.

Dr Ponder’s own HbA1c is 5.5% and I observed from the photos he was using of his own CGM data that his post meal spikes very seldom above 7 mmols. He did point out that he did start with a much wider range and then was able to fine tune it. But where he is now is impressive and inspiring.

He is also proof that you don’t have to do a low carbohydrate diet to achieve this. He described himself as an omni-carb :) He said while low carb regimes can calm the waters they don't factor in things like stress, site issues and unstable insulin. He displayed and talked us through his Fish and Chips experiment.

He also reminded us that important things to remember about type 1 diabetes is to never judge yourself, no one is perfect, and that diabetes care is a skill set to learn. People can find out more information about Sugar Surfing at www.sugarsurfing.com.

Here’s a little taster of what we learn.

The Principles of Sugar Surfing are;

- A CGM is no better than it’s user - Flux and Drift happen - steer them! - Set reasonable targets at first - Calibrate carefully - Keep your eye on the trend line - Learn to “wait for the bend” - patience - Master micro-dosing - Don’t let good enough be the enemy - Preempt; stay ahead of the wave - Sugar Surfing is a skill, not a recipe

The benefits of Sugar Surfing are:

- Not to feel restricted in what you eat - Attain and keep a lower range HbA1C - Live as normal a life as possible - Kick diabetes butt!!!

This event was organised completely by volunteers who live with type 1 diabetes and who have successfully organised two annual all-day Thriveabetes conferences. The next Thriveabetes Family Conference will take place on Saturday, 24th February 2018.

You can follow all Thriveabetes events through; Our website; http://thriveabetes.ie Email me: Grainne@Thriveabetes.ie Twitter: @Thriveabetes Facebook page: https://www.facebook.com/Thriveabetes/

COMMENTS FROM WORKSHOP ATTENDEES

“I'd just like to say that I get a huge sense of comfort being in the room with other parents and people living with T1. The support provided online is a lifeline but events such as Thriveabetes remind me of how important is also is to connect with these people offline and Thriveabetes achieves this in a very natural, friendly and supportive way. I can't find the words to describe the atmosphere in the room on Saturday. It was a very special day.” Pam Kavanagh, volunteer with Thriveabetes.

“Fantastic content - empowering pwd . This is so important. Unfortunately unusual in Ireland in my experience.”

“Fantastic engaging dynamic speaker. Now I wish that I met him years ago”

“Excellent speaker and workshop. Explained things very simply and easily to understand. Can't wait to try it. I have only been diagnosed with type 1 this year so really still learning, researching and testing what works best.”

“This was amazing Thank you learned a lot.”

“Very interesting, really nice to see other people with t1d”

“This was the most informative, qualified talk I have ever attended. Realistic and flexible approach. More of this please!”

“Very informative and useful talk and many thanks to Dr. Ponder for his amazing book and work in helping the diabetes community”

“This was a fantastic event. Thank you”

“A fantastic workshop Thank you so much”

“It was a fantastic event, the exhibitors were so informative and helpful. Dr. Ponder was amazing so educational and down to earth. Well done”