Thriveabetes

Support for People with Type 1 Diabetes

A couple of people have asked me about how to go about setting up a diabetes support group "offline", as in face to face meetings. So I thought I would share the journey of the Clare Diabetes Support Groups and how we have survived;-) My journey with the Clare Diabetes Support group began when my husband collected me from my clinic appointment in Ennis, June 2008. As soon as I sat into the car, the tears just streamed down my face.

During the clinic visit, I was weighed in a Digital Chair Weighing Scales, used in nursing homes, retirement homes and rehabilitation centres, it was humiliating! My doctor didn't even look at my blood glucose diary but yet increased my background insulin based on the fasting blood glucose in my lab results (from the blood sample given for HbA1c test). Best of all, both he and the nurse suggested that exercise would help me lose my baby weight, not sensitive to the fact that running around after two toddlers wasn't exercise. The doctor even told me to buy a double buggy so I could get exercise get walking!!!

I had been struggling to find decent diabetes healthcare for 18 months at this point and I didn't know what my other options were and I wasn't going to let myself have another awful experience like the one I just had.

I was desperate to find other people with type 1 diabetes to find out where they all went for their health care, where they learned the most and where there was "care" in the health care.

As soon as I got home I went digging for an article I had kept from the local paper about a diabetes information evening. I found it and rang the number straight away. The lady who answered was just like me!

This is where the Clare Type 1 Support group started.

Within a couple of weeks, we had hatched a plan to bring together local people with diabetes and ask them if that's what they wanted too.

They did!

In 2008, the Type 1 group began meeting in the foyer of a local hotel, every month. Some months it was just me and one other person but most months we had 3 or 4 people and always something to share.

In recent years, we found that a monthly meeting was too frequent and now we meet every second month from September to June.

By mid 2015, we had grown in numbers too big to congregate in a hotel lobby so we had to hire a meeting room. We were affiliated with Diabetes Ireland and are funded by the Clare branch.

Thankfully, the Clare branch has also grown in those years and had become sucessful enough at fundraising to cover the cost of private meeting rooms.

Occasionally, we invite guest speakers from the medical community or successful people living with diabetes. In recent years, we have invited IRFU, Rugby World Cup referee and person with diabetes, George Clancy and Neil Pakey, CEO of Shannon Airport/Shannon Group. From the healthcare community, our guest speakers have included dietitians, diabetes nurse specialists, GP’s with a special interest in diabetes, counsellors and podiatrists.

I struggle so much trying to talk about diabetes with people who don't have it. I find trying to explain terms like "insulin to carb ratios", why that blood glucose number is good because it's just after a meal, why if I'm already treating my hypo there is NO REASON TO PANIC!, why I don't snack or nibble (cos it's not worth the effort of calculating and bolusing!). So to not have to explain every little detail of diabetes and just focus on the important stuff is just so relaxing and so much less work.

We continue to support and inform each other and we always try to make sure that as many people with diabetes as possible know that we are there should they need us.

Find Your Support.

If you are interested in finding a support group in your area, we have added a list of the groups that we know of to our website here. If you know of a group, that isn't included on the list please let us know and we will add them.

How can People with Diabetes get the health service we deserve?

Dr. Kevin Moore spoke at Thriveabetes about how people with diabetes are not getting the health service we deserve or that is possible to have. He talked about how he and his team in Tallaght Hospital put in requests for improvements and how most times those requests fall on the deaf ears of hospital management.

However, he said that when patients get involved, it makes things happen. Not only do the doctors have to request changes, but we have to ask for it too.

It turns out that we have an opportunity to test this out this month.

The Model of Care Document for Children with type 1 diabetes.

Some of you might already have heard that the HSE has postponed, indefinitely, the publication of a Model of Care Document, which is aimed at improving the care of, and future outcomes for, children and teenagers with Type 1 diabetes. It’s kind of like the Irish version of the NICE guidelines being used in the UK.

When this document is published it will kick off all of the improvements on our wish list of a better healthcare service for our children and teens with type 1 diabetes. And then, we will be able to focus on what the adults with type 1 diabetes need.

Where did this document come from?

In 2011, the HSE set up the Paediatric Diabetes Working Group (PDWG), to figure out how to improve services for children with type 1 diabetes in Ireland. Click on the link above if you would like to know more about this group.

In July 2012, this group published the Model of Care for the Provision of Insulin Pumps for Type 1 Diabetes in the Under Five Age Group (later qualified as 6 & under).

This is how children aged 6 years and under were prioritized for access to insulin pumps. The objectives outlined in the Model of Care 2012 document were implemented (just barely) by 2014.

What about Children over the age of 6 years?

Since 2012, the PDWG has been developing a model of care for ALL children with type 1 diabetes.  

This is the document that has been postponed! The HSE agreed with the Minister for Health to launch this document on the 21 October 2015 and this was changed to 4 November 2015. Now,  that date is being pushed out again, indefinitely!!!

What can we do to get this document published?

We can send emails and letters to our TD’s asking them to ask the Minister for Health what the cause of the delay is and when will it be published. I have attached a draft of a similar letter that I send to our Clare TD’s a couple of weeks ago. If any of you are like me and struggle with the composition of a formal letter (OMG It takes me forever!)

The more letters and emails our TD’s receive on this issue, the less likely they will be to ignore it. Letters and emails also mean that the issue formally goes on record.

I don’t know about you but I am sick and tired of waiting for all of this to happen - I was offered a chance to do something and I took it! I hope I’m not alone?

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Introducing Thriveabetes.ie

After the Thriveabetes Conference in Maynooth, we realised very quickly that our blog format wasn't going to work very well for Thriveabetes going forward, especially if it's to become an annual event. So here is our blogs new home; www.thriveabetes.ie

Our hope is that from Thriveabetes 2015, we will build on the amazing energy this conference tapped into by running another conference and by working to help connect and invigorate the type 1 community.

Thriveabetes is more than just a conference.  We want to help connect people to the type 1 diabetes community, building a safe and supportive place to gain strength from something that otherwise makes us feel weak.

Our website is a work in progress and will expand over time. We will be adding a Resources page where people will be able to find peer to peer support a little closer to home and lots more.

We hope that you will continue to take this journey with us.

Gráinne.

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