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.