Thriveabetes 2018

I don't have a blog post this week because I'm in the midst of making sure everything goes without a hitch for this coming Saturday at Thriveabetes.

If you are new to my blog here's a little backstory to this event. It is a one day conference where you learn to Thrive with type 1 diabetes (hence "Thrive-abetes"). It was founded by myself, and fellow members of the Clare Diabetes group: Christine Meehan, and Rebecca Flanagan. 

It was inspired when myself and Christine travelled to a similar conference called "Friends for Life" organised by the Children with Diabetes organisation in the UK in 2014. It was amazing!!! It was the first time I had been in a room with so many other adults with type 1. I knew exactly who they were because of the coloured wristbands. 

Everybody is connect to the world of type 1 diabetes. It's a place where no one has to explain what a HbA1c is? Or that a "high" is not from something other than glucose. 

So, that's where I am and I will be back soon:-)

HSE Discriminates Against People with Type 1 Diabetes

The HSE discriminates against people with type 1 diabetes on the Freestyle Libre reimbursement scheme announced on January 19th 2018. The HSE states that it bases it recommendations on the Health Technology Assessment Group (HTAG) Advice Note so “that numbers being treated do not exceed that expected”. 

The HTAG Advice Note recommends that:
 “Careful patient selection should be part of the agreement, with hospital consultant initiation, and preference for children and young adults in the first instance so that numbers being treated do not exceed that expected, despite the lack of clinical evidence that the Freestyle Libre is beneficial for this group. 

I completely support taking a phased approach to this scheme as nobody knows how much it’s going to cost or save and this is a brand new scheme that will need to be tweaked.

Service Providers Must Make Reasonable Accommodations

However, there were many, many, many ways the HSE could have found to phase in the Freestyle Libre, in addition to clinical need but not limited by age. I can think of three straight away that would also not not allow the numbers of users to exceed expectations.

In fact, “The law which deals with disability in the provision of goods and services is the Equal Status Acts 2000-2015 (ESA) “says that service providers must make reasonable accommodations so that people with disabilities can use services like everyone else (Source - Human Rights Equality Commision).

I would actually argue that a person growing a tiny human in their dysfunctional body or a person who is on the verge of developing diabetic complications should be included.

Maybe a person with a medical card who would otherwise never afford this device should be prioritised?

Or person who is required to do SMBG testing "more than 10 times a day if this is necessary because of the person's lifestyle (for example, driving for a long period of time, undertaking high-risk activity or occupation, travel)." Source: UK NICE Guidelines. The NHS have issued similar guidelines to the Regional Medicines Optimisation Committee (RMOC) on who should be reimbursed for Flash Glucose Monitoring Systems.

Lacks Clinical Evidence to Support Recommendations

The HTAG document makes it’s recommendation that this device be approved for children without any clinical evidence to support it. 

It completely contradicts itself by saying that none of the clinical trials used to based their recommendations on had children as participants, that they are “unclear whether data from these (clinical trials Bolinder et al. 2016; Haak et al. 2017) trials are generalizable to children.” The HTAG acknowledges that “There is limited data to support the routine use in people who are less well managed or in children and young people.”

Yet this is the group they recommend. The HSE have chosen to ignore the clinical evidence from two clinical trials of the many, many benefits to adults on MDI. 
“Careful patient selection should be part of the agreement, with hospital consultant initiation, and preference for children and young adults in the first instance so that numbers being treated do not exceed that expected.”

They also chose to ignore the Expert Opinions who:

“consider the product would be of benefit to all patients with diabetes using multiple daily injections, however those who would benefit the most include:

• Young people with type 1 diabetes
• Parents or carers of children with type 1 diabetes
• People who struggle with SMBG
• People who lead active lives
• People who have poor hypoglycaemic awareness”.

Continuing Discriminatory Pattern towards Adults with Type 1 Diabetes

This is not the first time that the HSE have discriminated against adults with type 1 diabetes. Adults have been excluded from standard access to insulin pumps and from standard diabetes education so “that numbers being treated do not exceed that expected”. And now, the Freestyle Libre. 

When will the 13,000 Adults with Type 1 diabetes have the same provision of medical devices and services as children with type 1 diabetes?

When will our HSE and our government stop viewing us as a financial drain on the healthcare budget and finally see adults with type 1 diabetes as people worth investing in?

The HTAG document was published on the 11th November 2017 and can be found here. As of 3pm Thursday 15th February, this document has been taken off he HSE website, if you would like to view it you can do so here.

I posted my initial reaction to the HSE’s announcement here if you need background information.

See this post from Thriveabetes on what is happening with the Equality for all People with type 1 diabetes campaign.

Diabetic Retina Screen time

I remember the first time I got a letter like this from my Diabetic Retina Screening stating that I had background retinopathy. It. Freaked. Me. Out. Big Time! The language of the letter did not help either. It was actually my very first screening with the new service in 2015.

It was such a shock as all previous eye exams done at the community health centre were reported clear. I suppose it’s the difference between having a digital image that the reader can magnify and only relying on a human eye.

I remember trying to decide if I should have faith in the service to refer me if I needed it. Or if I should get a second opinion. I chose the first option but my faith was shaky.

My subsequent letter after my screening in 2016 stated that there was no background retinopathy. So, I assume that retinopathy fluctuates just like blood sugars and this is why I’m not freaking out this time.

*** Although, again, the wording of the letter is not in any way helpful.

I think every single person with diabetes worries about the health of their eyes (among other worries) and so if I don’t get an appointment for my annual screening I seek one out.

I didn’t have to do that this year though, so that was nice. Although, I frequently have to rearrange it because it clashes with school collection times.

One the day of my appointment I bring a driver with me. The dilation drops usually take a couple of hours to wear off and it’s difficult to drive. Oh! I also try to remember to bring a pair of sunglasses. Even if it’s not sunny. This year, I was not successful in remembering and it was the first gloriously sunny day we’d had in weeks. So very bright.

I was in and out of my appointment in less than a half an hour and I had my results at the end of the week.

I really wish that their letter was worded a little more compassionately and appropriately. “It is important to control your blood glucose and blood pressure”. Duh, trying to do that every single day!!! Have you ever tried to “control” something as volatile as a toddler?

If you are new to diabetes or new to the Diabetic Retina Screen Service here are some pointers.

WHAT IS THE DIABETIC RETINA SCREEN SERVICE?

Diabetic RetinaScreen was launched in 2013. It’s an Irish government-funded screening programme to ensure all people with diabetes over the age of 12 years are offered a free annual diabetic retinopathy screening.

It is limited to children over 12 years because complications of diabetes are so rare in children.

The Diabetic RetinaScreen programme uses specialised digital photography to examine the eye.

If you have diabetes, it is important to have the back of your eyes effectively screened every year.
 

HOW DOES THE DIABETIC RETINA SCREEN SERVICE WORK?

When you are diagnosed with diabetes, any type, either your GP or you need to be registered with the service. You can self register here.

You can check if you are on the register by by ringing Freephone 1800 45 45 55 (choose option 1).

Once registered, you will be invited for a screening appointment via letter.

Always remember that if the appointment is a day or time that is difficult for you, a quick phone call can rearrange. I think there may even be Saturday appointments!

Something else that is important to know about the screening service is that it is ONLY checking for retinopathy and diabetes related eye complications. This screen does not determine if you need glasses or if you wear glasses if you need your prescription changed.