On Wednesday 22nd June 2016 Diabetes Ireland, People with Diabetes and our National Clinical Leads in Diabetes Strategy briefed TD’s and Senators on the need for extra resources to improve the diabetes service for the 225,000 people living with the condition in Ireland today.  

How did it come about?

This event took place because Davina Lyon a person living with type 1 diabetes from Co. Kildare emailed her local TD’s about lack of services in both Naas and Tallaght Hospitals. And prompted by a call to action from Diabetes Ireland.

Frank O’Rourke, TD for Kildare North responded to Davina’s email and organised for us to have a room in Leinster House to make a presentation to our nation's TD’s and Senators.and invited all of his colleagues to attend.

I was so honoured that Davina, who is a friend through the Diabetes Online Community in Ireland, asked me to be a part of it. Both of us are members of Diabetes Ireland and asked for their advice and guidance on how to prepare for the briefing, which they did in huge quantities. Diabetes Ireland also put in a lot of their own stretched resources into their own preparation for the presentation with press releases and take away printouts for our attendees.

Our delegation grew to include;

Oireachtas Members;

•  Frank O’Rourke, TD for Kildare North
•  Mary Butler, TD Waterford.

Diabetes Ireland;

•  Kieran O’Leary, CEO
•  Hilary Hoey, Chairperson
•  Anna Clarke, Head of Research & Advocacy.

National Clinical Leads in Diabetes;

•  Dr. Nuala Murphy, Clinical Lead in Paediatric Diabetes
•  Dr Ronan Canavan, Outgoing Clinical Lead in Diabetes
•  Ms Siobhan Horkan,  Programme Manager for the HSE’s Paediatric Diabetes Clinical Programme

Four patient delegates;

•  Davina Lyon (Kildare),
•  Elizabeth Murphy (Waterford),
•  Grainne Flynn (Clare)
•  Rebecca Flanagan (Clare)

You can find out more about the patient representatives at the end of this post.

When the event was announced publicly, the four of us and Diabetes Ireland went to our diabetes online community asking if people would send emails to their own TD’s to represent them at this briefing. The response was overwhelming! And the true meaning of the word community was reinforced. Each TD we spoke to said they had received several emails and we felt you all in that room with us that day.

What a lot of pressure though, to speak for so many people:-O

 

What happened on the day?

Kieran, Anna, and Hilary from Diabetes Ireland, and Dr Murphy and Ms Horkan, greeted the four of us in Buswells across the street from Leinster House at 11am. With Dr Canavan, arriving in true superhero style; bike helmet and backpack. :-) 

We knocked back a quick one to steady our nerves!!!! No we didn’t! Three of us discussed our insulin adjustments for the nerves, excitement and the pressure that was causing some high BG’s and we had time for one very strong cup of coffee. Then it was show time!

Over the road we went, but first, get your photo taken;-)

The AV room in Leinster House is much like a small lecture room in a university, seats are not as comfy though. Frank O’Rourke & Mary Butler got us organised and settled.

Rebecca was brave enough to take the baton first. She gave a moving and detailed account of all the daily diabetes tasks that her 16 year old daughter has to do to help her manage her diabetes. We found out afterwards that this surprised a number of people who were under the impression that managing type 1 diabetes only involved eating healthily, taking insulin and forgetting about diabetes the rest of the day.

Davina Lyon spoke next giving her experience of making the very brave decision to go on an insulin pump only to discover that there was a waiting list and the only member of the diabetes team who could provide her with the training to use an insulin pump was on medical leave for the past six months.

Both our advocates spoke about the daily anxieties and concerns we feel living with type 1 diabetes such as the threat of diabetes complications, overdosing our insulin and the exhaustion of working out complicated daily mathematical problems.

Dr Murphy told us how “Right now, consultant paediatric endocrinologists are urgently required in Limerick, Galway and in the South East of the country. In Dublin, paediatric diabetes services are overflowing with insufficient clinic capacity to deliver high quality care. We have a shortfall of consultants, nurses and dietitians in each of our Dublin hospitals and with the new Children’s Hospital pending, planning for these posts needs to happen now”.

“In December 2015, a new paediatric diabetes strategy was launched which put forward a strong platform on which to build a high quality service with equity, local access and support for all children with Type 1 diabetes and their families, regardless of where they live in Ireland. As yet, we have seen no progress on implementing this strategy.”

TDs were informed that not a lot of extra resources were required for this. At present, 10% of the health budget is spent on diabetes annually with 60% of that spent on dealing with diabetes related complications. If just 0.4% (€5m) of that annual spend was re-directed towards funding the paediatric diabetes strategy, huge financial savings from preventing diabetes related complications would be accrued in future years” added Dr Murphy.

Dr Canavan, Consultant Endocrinologist, St Vincent’s & Loughlinstown Hospitals said “we have the costed strategies for paediatric, adult Type 1 & Type 2 diabetes that will address health inequalities, quality of life and health service planning to minimise expenditure and maximise patient care.

“We know that we can reduce the staggering amount spent on complications each year. In the past few years, the diabetes community has worked with the HSE in reducing the cost of diabetes medications and devices, making financial savings. We need those savings reallocated to providing the manpower resources to cope with the rising numbers and to encourage more effective daily management and better health outcomes. We need a multi-annual resource commitment to achieve this, rather than the annual “cap in hand” approach we all go through to try and get a few additional posts each year.

In time, we will then see a reduction in annual diabetes complications spending which will be good for the exchequer and more importantly quality of life”.

The presentations ended with a question and answer session from our TD’s.

It’s ironic that we, healthy people with diabetes, were there asking for an investment into keeping us healthy. Yet, if we had complications we would have a lot of what we need to manage those. Cart before the horse!

 

What were we asking for (the short version)?

The HSE has put measures in place that have reduced the cost of diabetes medications and devices, making financial savings.

We want those savings reallocated to providing the manpower resources below. We, (the service providers and the HSE) need to;

➜ Continue to support and implement the Type 2 Diabetes Cycle of Care Programme

➜ Implementation of the Paediatric Diabetes Model of Care

➜ Publish and implement the Adult with Diabetes Model of Care.

To do the above We need you, our TD’s and policy makers, to;

➜ Commit to a multi-annual funding programme to ensure that funding is in place for all of the above ➜ And that it is implemented in a timely manner.

 

Wrap it up!

We had to clear out of the AV room to allow the next group in. And the questions and discussions continued outside. Of course, before you leave always, always, get a photo inside the gates of Leinster House with purple socks in it!

Then we grabbed a lunch, hightailed it outta Dublin to make it home in time for your daughter’s 6th class graduation mass.

The four of us have received emails from various TD’s since Wednesday stating that they are supportive of what we are asking for and to keep them informed. Diabetes Ireland has another roundup of what happens next here.

And of course watch this space!!!

 

Huge thanks has to go to;

Frank O’Rourke, Mary Butler, Diabetes Ireland, Davina Lyon (all starts with her folks!!!), To our DOC. And to the gentleman who picked up my phone that I dropped & lost as I got out of the taxi and to Davina for picking up my handbag that I had forgotten all about and left in the AV room. Oops!

 

Who are your patient reps?

Davina Lyon; is a person with type 1 diabetes for 8 years from Kildare, a diabetes advocate, diabetes blogger and co-founder of the Diabetes T1 Ireland website and facebook page, which is aimed at providing information and support to people living with type 1 diabetes. Read Davina's review of the briefing here.

Elizabeth Murphy; is a person with type 1 diabetes for 40 years from Waterford, a diabetes advocate and works in information technology services.

Rebecca Flanagan; is mother to three very beautiful girls, her oldest, a 16 year old with type 1 diabetes for 8 years. Rebecca and her family live in Co. Clare. Rebecca is a diabetes advocate, marathon runner always raising money for diabetes and is co-founder of Thriveabetes. She also runs her own self catering business.

Grainne Flynn; is a person with type 1 diabetes for 23 years, originally from  Offaly, now living in Clare. She is a Diabetes Ireland volunteer, Diabetes Blogger, and Co-Founder & Event Organiser of Thriveabetes.