UPDATED - 04 April, 2019: There is a lot of interest these days in Continuous Glucose Monitoring (CGM) and how beneficial they are to help manage type 1 diabetes. In this post I have included information about:
What are Continuous Glucose Monitoring (CGM) and how do they work
CGM devices available in Ireland
CGM Qualifying Criteria for funding from the HSE
This post is the third in our series of What to expect at Thriveabetes 2018. The first post was about “What to Expect at Thriveabetes 2018 if you are an Adult with type 1 diabetes” and the second post was a little flavour for our 5 - 18 years olds attending in “Going for Your Dreams with Diabetes”. This post is for everyone attending and focuses on the fact that this year we have quite a few medical experts in type 1 diabetes, although this is not the predominant reason for attending Thriveabetes, some medical information is hugely beneficial, especially to those recently diagnosed. Three of our medical experts live with type 1 diabetes.
I do want to point out that every person attending Thriveabetes, yes that means all of you, is a diabetes expert and will bring your own knowledge to share with others on the day.
The full programme for all ages and groups attending Thriveabetes is available here and if I’ve convinced you enough to register before Christmas you can do so here.
Dr. Anna Clarke is Health Promotion and Research Manager with Diabetes Ireland. She has worked as a diabetes nurse specialist setting up the first private diabetes education service in Ireland. She has initiated projects to provide support for persons with diabetes and provide access to diabetes education at community level. The main initiatives are community orientated diabetes education programmes for professionals and people with diabetes, pharmacy based diabetes clinics, a diabetes module for accredited counsellors, and health promotion initiatives in schools, workplaces and community settings. She was part of the development team for the Galway University Health Promotion Module and is also currently an adjunct Lecturer in University College Dublin. Her main focus is as an advocate for people with diabetes on the National Diabetes Working Group, National Paediatric Working Group and Cooperation And Working Together (CAWT) and through the media as a media spokesperson for Diabetes Ireland.
Mark graduated from Queen’s University Belfast in 1998 with a doctorate in Clinical Psychology. Prior to this he worked as a Research Psychologist at St George’s Hospital Medical School, University of London. Since June 2000, he has worked at Belfast City Hospital where he provides a clinical psychology service to diabetes teams across Belfast Health & Social Care Trust. Most of his working time is spent talking to people with diabetes about a wide range of psychological issues that can impair their ability or willingness to look after their diabetes. In addition he provides supervision and training to a range of healthcare professionals both locally and nationally. He has published widely and, along with a team of colleagues, he runs an annual empowerment and counselling skills training course for healthcare professionals who work in diabetes services across Ireland.
In 2016, Prof Seán Dinneen; Consultant Endocrinologist, UHG, was appointed as National Lead for the Diabetes Clinical Programme of the Irish Health Service Executive. His professional interests include developing and evaluating programmes of self-management education for people with diabetes, developing optimal models of community-based diabetes care and understanding the diabetic foot. He was part of successful bids which brought a School of Podiatry and a Clinical Research Facility to NUI Galway.
Kate has been living with type 1 diabetes for over 30 years. She is a diabetes educator, psychologist, and currently a Doctorate candidate at the Royal College of Surgeons in Ireland. She is conducting a study looking at the access to insulin pump therapy in Ireland. Prior to that, she worked as a research data manager in Diabetes Centre of Our Lady's Children’s Hospital in Crumlin, Dublin.
She is a member of Diabetes Ireland, the Adult Type 1 Diabetes Support Group in Dublin, and a member of the International Society of Pediatric and Adolescent Diabetes. She engages in a lot of initiatives aiming to improve the quality of life of people with type 1 diabetes, she is also a proud Thriveabetes supporter.
Before she moved to Ireland, Kate had worked for many years as a diabetes educator, psychoeducator and insulin pumps certified trainer in one of the biggest pediatric diabetes centre in Warsaw, Poland. In her free time she likes to run, sail, dive and travel and spend time with her 1 year old daughter, her husband and two pets. Follow Kate on Twitter @gajewska_kate
Dr. Lumb has worked with what was formerly known as the Animas (now known as One Touch) Sports Weekend since it began. He is a Consultant in Diabetes and Acute General Medicine at Oxford University Hospitals NHS Foundation Trust. Through his career he has been interested in the management of Type 1 diabetes for sport and exercise and has worked with athletes in nationally recognised clinics in the area. He is particularly interested in how technology can be helpful in this arena. His other professional interests include inpatient diabetes care, antenatal diabetes, cystic fibrosis related diabetes, and integrated diabetes care. Outside of work he is a keen cyclist.
P.S. Thriveabetes cofounder, Christine Meehan attended the One Touch Sports weekend last October and LOVED IT!!!
Gráinne has been working in the area of paediatric diabetes for over 15 years and is currently working at Tallaght hospital where we have nearly 400 children with type 1 diabetes attending our service. I thoroughly enjoy working in this area and in particular I love facilitating group education programmes for children with diabetes & their families.
I have spoken at several parent information evenings organised by diabetes ireland and am just back from ISPAD where I presented our findings on introducing structured group education programmes to families attending our service. I am passionate about teaching carb counting and look forward to presenting on the dietary factors that can affect postprandial blood glucose control.
Just like Joe Solo, we would find it very difficult to have a Thriveabetes without Kevin Moore. Kevin is a Consultant endocrinologist in Tallaght Hospital, Naas General Hospital and the Beacon Hospital. Kevin has been making occasional guest appearances at the Type 1 Diabetes Support group meetings in Dublin for a number of years. This is his third Thriveabetes.
He works tirelessly to improve the life of patients with diabetes and those with chronic endocrine disorders. Dr. Moore is a strong advocate for healthy lifestyle with chronic conditions. He has undertaken a number of activities with patients, including climbing Mt. Kilimanjaro, participating in triathlons and 5-10Km runs. He regularly gives voluntary patient education talks throughout Ireland, including at the Type 1 diabetes support group for adults in Dublin.
Paula lives in Co. Galway. Paula’s son was diagnosed with Type 1 four years ago, when he was seven years old. Paula tutors in Counselling and Psychotherapy and is in private practice as a Psychotherapist. She believes that when someone in a family is diagnosed with Type 1, the whole family is affected. Paula would love to see families being given, not only practical, medical and educational support at this time, but also the emotional support they need. Both Paula and her husband, Philip are also involved in the Loughrea Youth Theatre.
Joe has been living with type 1 diabetes for over 50 years. He grew up in New York but now lives in California. He is a registered nurse, diabetes educator and family therapist and works extensively with both patients and professionals on the "Family-Approach to Diabetes Management"; helping children with type 1 diabetes and their families to cope with their child's diagnosis and daily challenges of living with diabetes. His ebook "A Type 1 Guide to the Universe”introduces a new way to learn to thrive with diabetes. It is the first book to integrate the psychological and emotional aspects of dealing with diabetes into the core of its approach.
You can also watch Joe on several videos.
The full programme for all ages and groups attending Thriveabetes is available here and if I’ve convinced you enough to register before Christmas you can do so here.
It’s been over a year since the Abbott Freestyle Libre became available to purchase in Ireland. This product is a new way of monitoring blood glucose levels without finger pricking. Instead you use a reader device (which is just like the Freestyle Optium Neo meter) to scan a sensor that sits on your arm. And it has been a game changer in diabetes management for most who have used it.
I don’t know how many people are using the Libre in Ireland but from the chatter in the diabetes online community it would seem that the number of users is significant. And there are a lot more people who can’t afford it, so have to wait until it’s available on the Long Term Illness Scheme.
When is that going to happen? Is it going to happen?!? Any day now!!! Surely any day now. That’s my wishful thinking anyway.
If you are wondering what has happened in this process in the last 13/14 months I’ve put together a little summary which might be useful. And last June, I wrote this piece on what was happening then with the process of getting it included on the HSE long term illness scheme. I was very optimistic. I still am!
I should probably mention that I don't know anymore than any other member of the public. All the information below is in the public domain.
TIMELINE
WHAT CAN YOU DO
A lot of people, myself included, are people of action. I mean I do have a certain amount of patience but it’s has limits. So, if you would like to get this done and the Freestyle Libre included in the Long Term Illness scheme here are a couple of things you can do.
CONTACT ALL OF YOUR LOCAL TD'S
I know most of you have already done this and it's frustrating to have to do it a-gain! But this really helps strengthen the case for a speedy approval. Especially, if they hear from LOTS of their constituents. You can write a letter, email or telephone but it’s important that you contact ALL of your local TD’s. If you’re not sure who all your local elected representatives are, find them and their contact details here.
What to ask? Ask them to ask the HSE when the Freestyle Libre will be available on the Long Term Illness scheme and why it’s taking so long. They will submit a parliamentary question in the Dail that will be referred to the HSE who are legally required to answer. This is a fabulous way to spend our income tax and creates lots of extra work for people who then get motivated.
SIGN THIS PETITION
This change.org petition was started by Limerick Mum Louise Hackett, whose daughter has type 1 diabetes in December 2016. It had well over 4,000 signatures. There have been a couple of other petitions shared over the year but this one has the most signatures at well over 4,000 and it hasn’t been delivered to the Minister for Health, Simon Harris or the HSE just yet. A boost in the number of signatures would really help and then present it.
SOME MONEY SAVING TIPS IF YOU ARE ALREADY PAYING FOR YOUR LIBRE
If you are paying for your Freestyle Libre at the moment please be aware there are money saving offers such as the occasional Free Shipping, etc. on the Freestyle Libre website, as well as claiming refunds through your tax return. More than this here.
