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.