Our topic today is The Healthcare Experience. 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 say anything here I would like to draw your attention to the fact that all of my diabetes care is government funded in New Zealand and because of this there are a great deal of factors that are beyond the control of HCP’s and as a result are not their fault.
I’ll start with what frustrates me about the healthcare system at present with it’s treatment of T1D because I want to finish on a high 😉
There are only two things that I can really pick on with T1D management and in the grand scheme of things, when compared to some other countries these are not worth complaining about.
The first is that resources for T1D management are limited and controlled by the government. As i’m sure we have all seen on other blogs, Facebook pages and websites there is a plethora of resources available to assist with T1D management but in New Zealand only ones that the Government approves of are allowed to be sold within the country and only one brand of blood glucose meter and test strips are funded, there is a constant battle between people having to use these resources daily and the Government as often these resources are not appropriate or of good enough quality/reliability. When living with a chronic illness I believe it is really important to acknowledge that every individual is just that, an individual, the way that they choose to live their lives is different, what they face each day is different and because of this different management techniques suit different people. There is not, has not been and never will be a one size fits all management strategy for people with T1D and I really would like to see the Government acknowledge this and make moves to allow and fund more management resources within the country.
The second is a mixture of the training provided to staff members and access to trained staff members. I think that as someone with a chronic illness you become an expert on it, lets face it you live with it 24/7, you deal with the highs and lows and manage every aspect, often unassisted so you have a great deal more time to gain experience and knowledge because of this I feel the need to point out that HCP’s do not (on the whole) get this experience and therefore I don’t feel I can judge them too harshly. BUT I have noticed that there is this feeling of ‘I’ve been trained about this so I know, now do what I say’ that appears to come from some medical staff (to be fair these staff members are the ones working generically not specifically in T1D) but it can be really affronting to be told that you basically don’t know anything and should just do what you are told. Often what is suggested is very old hat or basic and if you are like me you are quite a bit more advanced and do actually have an understanding on a more biological level. I would really like to see more compassion and acknowledgement that I, as a patient may actually have some knowledge on the topic and my illness can be discussed WITH me instead of just IN FRONT of me and a slightly less ‘high and mighty’ approach from HCP’s (I must stress here that most of the people I have experienced this kind of attitude with have been younger new grads and I do wonder if it is just a younger person thing?) I am someone who does not reach out for medical help with their T1D until they really have to, if I have scrapped the bottom of the barrel and there is no where left to go then I will look for help but all too often I cannot get the help and feel left hanging 😦 it’s a horrible feeling and situation to be in and makes me feel really vulnerable. Unfortunately it is all down to funding, there is not enough staff to have an expert available 24/7, the staff do try but things have to be prioritized and if the list is long things can get lost.
Overall, for me personally, I don’t see my endocrinologist any more than once a year as her understanding of pumps is not enough to assist in my management. I see one nurse every 3months who I have an amazing relationship with and cannot speak highly enough of! I have had her since I was 10 and admittedly have not always had the best relationship with her but as I have grown up this has improved. My only complaint is that she is so busy that I cannot get hold of her easily when I need to but this is not her fault, it is due to staffing and funding.
Last of all, what am I doing about all of this. I feel that it is all very well to sit and tell you what I don’t like and how hard I have it but I don’t really feel I have the right to unless I am actively trying to change it. So I became a ‘Friend of the Medical School’ I go in whenever I am called and attend lectures or small classes on one of the various things that is wrong with me and the students quiz, poke, prod and examine me. We talk about how my conditions effect my life, my health, my lifestyle. The resources I use, how they help and what would be more helpful if it were available. It provides an opportunity for the students to view T1D and other conditions through a different lens and hopefully allows them to come away with a rounder view on the condition, rather than just viewing it through a purely medical lens. I get asked questions that I had never thought of and I get to share information that I feel is important for these young Doctors to know before they begin their practice. They hopefully come away with more knowledge and I come away with a feeling that i have done some good in enabling them to have more understanding about various conditions and making them think more before jumping to conclusions. It allows me to feel like my conditions are being used for good and it is not all just bad my having them.
All in all I am extremely lucky with the medical treatment and resources available to me, yes there could be vast improvements but I am alive and have a very reasonable quality of life because of these treatments and resources, which I am very grateful for.