I read a powerful piece yesterday by Canadian writer, speaker and health advocate, Sue Robins. She has years of experience as a family advocate (her son has Down Syndome), and then, after being diagnosed with cancer, a patient in the health system.
Sue’s post was about her decision to withdraw from the world of patient engagement. Clearly, it was not an easy decision, but one that she felt she needed to make for her own wellbeing. No one could ever blame her.
So much of what I read in Sue’s piece resonated. The desperation she beautifully and eloquently outlined is something that I keenly have felt (feel?). And I know it’s not just me. I see that in the eyes of others trying to elevate the role of ‘patients’ and to ensure that we are truly listened to, and treated with the respect, compassion and kindness we deserve, all the time.
I get the constant battle that we have – and it does feel like a battle a lot of the time. On one hand we feel so invested in what is going on because it is happening to us directly. How can we feel any other way?
If we are living with the condition, it is personal beyond measure. If we are caring for someone and advocating for them, there is a different sense of pressure and investment. And if we decide that this is ‘a calling’ and do it professionally, there is a different again as we try to work within different parameters – the need to keep within the realms of what our work allows, and the less structured realities of actually living with a health condition.
For me, there is a mixture of the professional (because of my job) and the personal (because of my pancreas). I feel the push-pull of that daily.
I get tired. I get overwhelmed. I get discouraged. I get disengaged. I get disheartened.
I feel the system is broken and I feel how that goes on to break people. I have found myself at that breaking point on more than one occasion when the system is failing me, and equally, when I see it failing others and I can’t help.
Operating in a network with so many stakeholders is always difficult, but when each of those stakeholders seems to have a different mission, it becomes impossible. Because as much as we want to think that everyone’s mission is for the best outcome for the ‘patient’, I don’t know that that is necessarily true.
What I want when I walk into a hospital or a clinic appointment (or a GP appointment, pathology room, specialist check-up, operating surgery, or any other healthcare setting) is different to what the hospital administrators want, or the HCP, or policy makers, or any other stakeholder. Despite the claims of mission statements everywhere, it is undeniable that it is not the persons in the so-called person-centred care that direct outcomes.
Every single story we hear where someone is treated poorly, isn’t listened to, is blamed for their condition, is not given time or space to voice their needs, feels uncomfortable with how they have been spoken to, is another example of the system not being person-centred.
In diabetes, it could look like this:
- A person not being given the option of using the device they want to manage their diabetes. I repeatedly hear people say that they were told they could not use the pump they want to use because their clinic doesn’t offer that one.
- A person who is just diagnosed with type 2 diabetes, or needing to go on insulin to treat their type 2 diabetes being told that it was through their doing that this has happened.
- It could be not being able to manage our diabetes as we do at home when we are in hospital – insulin is removed from us, pumps are taken away, we are not allowed to use CGM in hospital and must go back to using blood glucose monitoring, not being able to eat the foods that we want because we must have the ‘diabetic menu’.
- A diabetes-related complication diagnosis is met with judgement instead of information about how to move forward.
- A person with diabetes being denied the time they need to speak about what is really concerning them, instead appointments following a formula that is unable to be adjusted.
It also looks like being excluded from the consultation, development, coordination and evaluation of programs, services, activities and resources that we are meant to use and find useful.
I don’t say these things because I think HCPs are out to get us, or that hospital admin teams are trying to make our lives hell, or that policy makers don’t care. I understand that everyone is working in trying times with funding cuts that are crippling the system. I know there are guidelines that need to be followed.
But at the end of the day, diabetes is our life. Melinda Seed has said ‘We have skin in the game’, a term I use when talking about the safety of using DIYAPS. We mean it literally as well as figuratively.
Again – I am not in any way minimising the commitment and dedication that HCPs have to working in healthcare. I genuinely believe that almost all are there trying to improve our lives and help us make sense of what is going on in our bodies.
But our desired outcomes are different. My KPIs when I walk out of a HCP appointment include feeling positive, feeling listened to and knowing how to move forward until my next appointment. I need to feel that I am equipped, motivated and encouraged.
We can read stories like Sue’s and shrug and say that she is burnt out. Burn out is almost inevitable when living with, or advocating for someone, with a life-long condition. But we shouldn’t be getting burnt out by the system. We get that enough when our bodies decide to start working against us. We need the health system to be working for us. And with us.
4 comments
Comments feed for this article
January 25, 2019 at 2:30 pm
Rick Phillips
I guess I do not think the system should do anything much for me. I do believe that I only get out of the system what I demand. That may be a male oriented view of the system. I insist that my healthcare team serve me or if not, I find a new healthcare partner.
Partner because I hire them to manage parts of my healthcare which I cannot. I cannot write prescriptions, need a professional for that and like all professional I partner with them. Also like all partners I have to willing to fire them and find a new partner if they cannot help me.
Helping me : understand my health, talk to other health providers, give me access to tests, explain health issue, tell me of long term solutions and strategy. i have dealt with many professional engineers, architects, attorneys and accountants in my regular life. I treat my doctors the same. I am good with bad news, I am not good with rude, abrupt, or condescending attitude. I am good with disagreements, I am not good with any statement like they will stop working with me unless I agree 100%. Oh and two more: 1. we laugh and 2. we never say unless you do X I am walking out.
When someone says I am walking out, i usually beat them to the door.
LikeLike
January 26, 2019 at 5:29 am
Kerri.
Your post, and the one you linked to, and the two that the one you linked to linked to (whoa, sentence structure) are competing for space in my head. So much of what you wrote speaks to me. And what they (and they and they) wrote does, as well. I have a lot of thoughts but they aren’t fully formed yet. The thank you for writing this is ready to go public, though: thank you. xo
LikeLiked by 1 person
January 26, 2019 at 7:58 am
RenzaS / Diabetogenic
Love you. Miss you. x
LikeLike
January 26, 2019 at 3:54 pm
Jean Beaumont
Hi Renza, I am hearing you and sadly so I totally understand you. I am baffled by the diabetes healthcare system, totally baffled…… if not exhausted by it. Burnout….. its almost flame out with the running around I have to do to combat all the different specialists required to treat or check in on all the complications that happen throughout a diabetics body. If I haven’t said it once I have said it a thousands times, ‘why isn’t there a one stop shop for diabetes management’ There should be one in every major township!! When I go to a endocrinologist their focus is BSL’s, however I have 7 other diabetic related problems that never get to discussion, that’s 7 other separate appointments I have to make to cover those issues all over Melbourne driving from the country. Its just not sustainable to keep on top of and has me cancelling more often than attending at the thought of the drive, the parking, the whole coordination of getting to a 20 minute rushed appointment to come out going huh why did I come!. Oh make that 8 appointments if you add in a mental health appointment from dealing with ‘burnout’ from all of the above. I just don’t get it but I also don’t have any answers either.
LikeLike