The healthcare experience

Day 4 of #DBlogWeek and I have now read every single post from yesterday about diabetes and language and I was so interested to hear all the different perspectives. Not slowing down yet! There are still many blogs to read!

Today’s prompt: Most people who live with a chronic illness end up with a lot of experience when it comes to dealing with healthcare. How would you improve or change your healthcare experience? What would you like to see happening during medical visits with your healthcare team? How about when dealing with your health insurance companies? What’s your Healthcare Wish List or Biggest Frustration? Today is the day to share it all!

Before I was diagnosed with diabetes, I had very limited experience dealing with healthcare. I remember those days fondly because now, with my frequent flyer status firmly entrenched as Platinum, I feel that I have had far too much experience.

However, for the most part, the frequent flyer program I am part of isn’t that bad because I have been able to tailor it to my needs. I have selected a team of HCPs to meet my needs and respond to my particular quirks.

So, I am going to turn today’s topic on its head a little and write about the really positive things that I encounter in my healthcare.

• The respect I receive at all times from the HCPs I have chosen.
• The access I have to my team. They have kindly handed out their after hours contact numbers and are happy for me to reach out to them via email. I have never taken this for granted or abused it and only ever have contacted them when I have absolutely needed it.
• Because I see the same HCPs every time I visit (because I pay to see them privately), there is no need to go back and start from the beginning, explaining who I am and my convoluted medical history. They know me; they know why I am there.
• Not one of my HCPs believes that diabetes is the most important part of my life and therefore understands that there are many times I will show up to an appointment unprepared. And there is no judgement from them for this.
• My HCP team also understand that diabetes is far more than a condition of numbers and are incredibly aware of the emotional aspects of living with diabetes. My endo and GP have been quick of the mark on several occasions suggesting I see a psychologist. For this, I am very grateful.
• A couple of my HCPs know just how valuable peer support networks are. They ‘get’ that the people living in my computer are as critical to my diabetes wellbeing as my visits to them. Even better, I know they pass this information on to other people with diabetes they see.
• I have an ‘indefinite referral’ to my specialists, which means I don’t need to see my GP each year asking for another referral. I also have ‘indefinite diabetes’, so this is useful!
• Our public health system is far from perfect, but when I have had to use it, for the most part it has been brilliant.
• Our National Diabetes Services Scheme (NDSS). I was registered the day I was diagnosed which meant that I have had access to subsidised diabetes supplies since then. It still costs money (although syringes and pen needles are free), but it is heavily subsidised.
• And while talking about the NDSS – once registered, that’s it. There is no need to prove that I still have diabetes or that I still need access to strips or pump consumables.
• Insulin prescriptions are easy to fill – a simple call to the pharmacy and the next day it’s waiting for me to collect for the total of around $40. And that lasts me about two and a half months.
• Insurance in Australia is nowhere near the nightmare issue it is in the US. I choose to pay for private insurance for the simple reason that I want the full cost of my pump covered and I want to be able to choose the HCPs who treat me. My premium is not in any way affected because I have diabetes nor can I be refused cover.

Of course, there are things that could be better. Access to technology is one of those things – and by that I mean easier, more affordable access with a HCP workforce equipped and educated to work with us. We need swifter and smoother access pathways too, so that when new tech or drugs arrive on the market, they are approved for use and being utilised by PWD as soon as possible.

Outside Australia, there is much to do to improve access to basic diabetes needs.

And finally, what I believe will go a long way in improving the healthcare experience for people with diabetes is to better consult with us. We need to be part of the development process of systems, programs, services, devices. There needs to be better listening of, and engagement with us. Because only then will the people creating the healthcare experience we have to use understand what we truly need.