More about Kate Fazakerley & The Families with Diabetes Network

Kate Fazakerley, spoke to our parents of children with type 1 diabetes group at Thriveabetes on October 3rd. She is not only mum to Isobel, who was diagnosed with type 1 diabetes at aged 2, and Dominic. She is also the chairperson of a group called The Families with Diabetes Network.

What is The Families with Diabetes Network?

They are a group of parent representatives from each region in the United Kingdom. They all have children with diabetes and all attend regular meetings with representatives from hospitals in their regions to represent the views of families living with diabetes.

These meetings are a part of the NHS' National Children and Young People’s Diabetes Network, which was set up in 2009 and consists of 10 regional networks each chaired by a lead clinician.

Each regional network includes all the paediatric diabetes clinics in that region, with their multi-disciplinary teams, as members. The aim of the Network is to implement the nationally agreed Improvement Plans including the various aspects of the Best Practice Tariff and peer review.

They are run independently and managed by parents. They meet twice a year at the National Children and Young People’s Diabetes Network meeting and regularly throughout the year by Skype.

Kate says the parents are now quite engaged in the paediatric clinical networks in England and it really began with parents volunteering, as I did, to represent patients at their local hospitals by attending meetings with the clinical team such as the meetings that Dr. Kevin Moore is holding with his team in Tallaght Hospital.

"As our parents were becoming organised, clinicians who were keen to improve the standard of care across the country, started to organise themselves into regional networks meeting up and liaising with their colleagues from other hospitals to try to identify and share best practice and the parent reps went with them becoming regional reps.

We compare the outcomes such as average HbA1c across different hospitals so we can see which are doing well and which are not."

Future plans for the Families with Diabetes Network

During 2015, they will be collating feedback from families on the new NICE guidelines.

They will submit articles to the journal, Diabetes Care for Children & Young People,  based our surveys and work on transition.

They will, also, work with the National Network to produce a competency framework for transition and they will continue to promote Diabetes UK's "Make the Grade" and "4Ts" campaigns and the DLA Toolkit.

World Diabetes Day 2015

For a long time I was a little hesitant to celebrate World Diabetes Day November 14th because I didn't really think diabetes was something to be celebrated. But then I realised that I wasn't celebrating diabetes! I'm celebrating being alive! And celebrating one of the men who is responsible for me being alive, Frederick Banting.

In 1922, only 93 years ago, Frederick Banting, Charles Best and John James Rickard Macleod, first conceived the idea which led to the discovery of insulin.

Since 1991 when the IDF and the WHO made World Diabetes Day a "thing" it has grown enormous. And this year there are SO MANY things you can do to mark the event.

Here's a few that caught my attention but there are loads, LOADS more;

The Big Blue Test

The Big Blue Test is a diabetes awareness initiative that was started 7 years ago by an American non-profit organisation, called the Diabetes Hands Foundation (amazing organization worthy of another post). The BBT is about how one small change can have a huge impact on your health; if you have diabetes or not.

And every BBT logged raises money for those with diabetes who are less fortunate than us.

Not only is The Big Blue Test creating awareness about diabetes, it's also encouraging people who don't have diabetes to exercise and it's creating awareness in our own community about how effective even a little bit of exercise is as a diabetes management tool.

And, by participating in the Big Blue Test, we get to help people living with diabetes who are in need with grants for life-saving diabetes supplies, treatments and patient education, usually in developing countries. Follow this link if you would like to take the Big Blue Test and help others.

#T1DLOOKSLIKEME

On Nov. 1, the JDRF launched an online campaign called T1D Looks Like Me, that includes a photo generator for people to add to a social wall collection of other #T1DLooksLikeMe photos. It was really cool to open my Facebook newsfeed on Monday morning and see all the blue profile pics.

They explain: “This year during the month of November, we will be using our JDRF community as megaphones to empower and engage the entire global T1D community. Through our new campaign... we will showcase the faces and stories of people who feel the real impact of T1D day in and day out. T1D looks like the high school basketball player who checks his blood sugar on the bench during his game. T1D looks like the race car driver who at 225 MPH is at the top of his career and won’t let this disease stop him. T1D is a complicated, tiring, and unpredictable disease that too many of us know too well. T1D Looks Like Me shows and shares the many ages, stages and triumphs of the T1D community. Our shared vision of creating a world without T1D is what binds all of us together and what better month to kick-off this campaign than November.”

Blue Circle Selfie

International Diabetes Federation's created the blue circle as the world symbol for diabetes. And to build up it's recognition they created the WDD selfie app to promote the blue circle in a fun way.

How to use the app:

• Download it for IOS (Apple) or Android (click on IOS or Android or scan the QR code below)
• Allow WDD to use your picture to make sure it is shared on our WDD pages
• Take a selfie
• Move the blue circle around your face or be creative
• Share it online with your friends and add a personal message to it

Promote Healthy Eating with IDF

The International Diabetes Federation (IDF) is an umbrella organisation of over 230 national diabetes associations in 170 countries and territories. It represents the interests of the growing number of people with diabetes and those at risk. The Federation has been leading the global diabetes community since 1950.

The IDF is responsible for the official marking of World Diabetes Day which they initiated in 1991.

This year they have lots going on including a healthy eating campaign to emphasis that it is an important part of managing all types of diabetes.

Hope in the Hand

D-Mom, Cathy Knight KcConkey, wanted to show children with type 1 diabetes they’re not alone. Since 2009, she’s been encouraging others to write “Hope” on their hand, take a photo of it, and post the picture on Facebook. You can do this any day of the year, but just be sure to do it on World Diabetes Day!

Project Blue November

Ever wonder what amazing things a group of mothers can do? (No, cos, I know that women run this world:-) This group founded by D-Moms will be doing a tweet a day to raise awareness. They have a whole list of hashtags you can use each day in November, as well as posting a picture on Instagram each day.

So many options, how do you choose?

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.