Thriveabetes Fundraising Music Event

I'm so excited about this that I have to pinch myself repeatedly!!! Some of our volunteers have organised a Fundraising Music Evening on Saturday 12th August in The Moat Theatre, Naas, Co. Kildare to raise funds for Thriveabetes 2018. Please share this event with your family and friends.

Musical guests will include; Pete Kavanagh, The Cahill Sisters, Hally and special guest, Luka Bloom.

Tickets are €15 and can be purchased in advance (allocated seating) through The Moat Theatre or Telephone: 045 883 030

A lot of you may already know that we need a fundraiser to keep the cost of attending the Thriveabetes Family conference down as much as possible.

As you can imagine, a family event like Thriveabetes costs quite a bit. But I am seriously very proud of the fact that we only have to find 20% of the cost through public fundraising. This is where Pete and Pam Kavanagh stepped up.

Pete is a musician living in Naas, Co. Kildare, whose eight year old son, Cayden, was diagnosed with type 1 diabetes in February 2016. The Kavanagh’s recently moved back to their home town from Scotland. Pete’s wife, Pam is a website manager and volunteered her services when Thriveabetes needed help with our website and continues to do so.

When I mentioned at our Thriveabetes team meeting that I didn't think I could find the time to pull off a raffle this year, Pam said “Leave it with me”. Sure enough within two weeks, Pete Kavanagh had the venue and all the acts booked!

Read Pam's story here on what Thriveabetes means to her and her family.

WOULD YOU LIKE TO HELP? WE WOULD LOVE YOU TO.

Thriveabetes is very much a community and as a community we would love to have you all involved in the success of this event. There are 3 areas that we would love help with;

1 - MARKETING AND PROMOTION This help would be huge for us as it would increase our chances of having a bum on every seat;-) Pete would love to hear from you if you can help with marketing and promotion. You can reach him at Petebkavanagh@gmail.com or message him on facebook at @PeteKavanaghMusic

2 - SPONSOR RAFFLE PRIZES

We are holding a raffle at the concert and very much need some raffle prizes. Would you, your employer or friends & family be in a position to sponsor a prize? Again Pete would love to hear from you if you can help!

And 3 - SHARE OUR FACEBOOK AND TWITTER POSTS

This is one for everybody. Please share the event on your social media page via Facebook or Twitter Handle - @Thriveabetes You can also share stories of why Thriveabetes is so important for you and what it gives you and your family.

WHAT IS THRIVEABETES?

Just in case you are a new follower or subscriber, here is a little background to how thriveabetes all began….

Thriveabetes is a one day conference that brings people who live with type 1 diabetes together in real life. It came about when myself and Christine Meehan, fellow co-founder, attended a diabetes conference in the UK called “Friends for Life” or FFL run by the A-Mazing Children with Diabetes organisation.

As we sat in a room hearing the familiar beeps of blood glucose meters and insulin pumps, we realised that every single person in that room knew diabetes! Both myself and Christine are adults with type 1 diabetes and don't very often find ourselves in a room with lots of other people with type 1 diabetes.

What we found at these conferences were hundreds of people, to be precise 300 families at the FFL in 2014, who were just like us; living with type 1 diabetes. We heard from speakers who knew exactly what our daily challenges were and offered practical solutions through sharing their lives with diabetes with us. I came away from these conferences with so much new information and a renewed focus on managing my diabetes. And feeling less isolated and alone, like I’d found a second home.

Myself, Christine and Rebecca Flanagan asked our Irish Diabetes Online community if they would be interested in having this experience in Ireland. You can guess what the answer was, as we are busily planning the 3rd Thriveabetes Family Conference in February 2018.

Today, Thriveabetes is a group of dedicated volunteers, who give a lot of their time freely and feel passionate about bringing people with type 1 diabetes together where we can bring our online connections into real life. The Thriveabetes conferences focus on our social and psychological needs in living with diabetes rather than our medical needs.

Email grainne@thriveabetes.ie Thriveabetes takes place on Saturday 24th February 2018 in The Red Cow Hotel, Dublin.

Over the summer we will be confirming speakers for our programme. We have already confirmed Moira McCarthy Standford. Rregistration will open in October. Stay tuned.

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.