Type 1 Diabetes Model of Care for Children and Teens

Some weeks back you may remember I posted about the postponement, indefinitely, of the publication of the Health Service's Model of Care Document 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. And while there is no real news just yet, there is progress on its publication.

This is an excerpt from the attached letter I received. "As you can appreciate any model of care or other documents which come from the national clinical programmes must go through a process of public consultation, clinical advisory group sign off and the HSE senior management sign off prior to launch and implementation."

This consultation process is still taking place but the HSE are working towards a launch date of mid December.

I would personally like to thank the two Clare TD's, Timmy Dooley & Joe Carey, who emailed me with updates on this issue. In particular, Deputy Timmy Dooley who even emailed me almost every week, even when there was no news. But his emails reassured me that he was still working on it.

I have also been led to believe that TD's all around the country received similar letters from their constituents. If that's you; I sincerely thank you for taking the time to do that. I know it's not easy to find the time to do something like that. And you will probably have received the response below from your letters to TD's.

So, even though we are not there yet, you are all helping to make progress.

PQ 38451-15 Paediatric Diabetes MoC_Timmy Dooley

Be the Giant Slayer! 

Grainne

What's happening with Thriveabetes 2016?

Don't ask!!! No, just kidding:-) Myself, Rebecca & Christine are working really hard to lock down a venue for Thriveabetes 2016. We hope to announce the venue along with a date before the end of the year. 

When people filled out our "How did we do?" survey after Thriveabetes we had lots of offers of help, which was great! So we are hoping that people can now volunteer what area of the conference they would like to get involved with. At the moment, we have three volunteer roles that we would really appreciate some help with. But we know in the future we will have more roles to fill and if you have a talent, interest or hobby that you think we could use, we WANT to hear from you!

Here are the roles we know we need now;

Exhibition: We are also hoping to expand our exhibition so that we might include a bigger variety of products. If anyone has any experience in organising exhibitions or trade shows and would like to offer their assistance, we would be very appreciative.

Children & Teens programmes: We were very much aware that facilitating our children would have made the conference more accessible for more people. So our number 1 priority will be developing programmes for all the different age groups of children and teens with diabetes and their siblings and how to make this work.

Blogging:  I feel that it is really important to maintain the spark of connecting people with diabetes found at Thriveabetes and, in my opinion, one of the ways that will help to maintain some of this spark is our blog.

I am looking for blog post ideas or submissions for stories. If you have a story you want to share, if your child with type 1 diabetes wants to share, we'd love to hear it! Send your submissions to me at Grainne@thriveabetes.ie.

The only restriction that we will impose is that it is related to living with diabetes.

P.S. Don't forget you can connect with any of the Diabetes Support groups, virtual and real, to stay connected.

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.