There are times that I am dismayed at what I read on Facebook about people navigating diabetes care for themselves or their child. Today, I was asked for my comment on a situation where a child with type 1 was being threatened with the removal of her pump because her HbA1c was higher than target.
This really gets my blood boiling for a number of reasons. Let me count the ways!
- A pump is not a luxury. It is a way of delivering insulin. Let’s be clear about that. It is a tool that we use in the management of our diabetes.
- The only person who has the right to determine how their diabetes will be managed is the person with the faulty pancreas (or their parents in the case of young children).
- HCPs are there to work with us and be guided by what we need and what we are asking for. Equally, we look to them for support, education, advice and information about our diabetes management. We do not look to them to be told off or judged.
- Punishing a PWD by removing a management tool is just plain stupid. Like it or not, I need to give myself insulin and I choose to use a pump to do that. If I’m feeling a little unmotivated and don’t have the capacity to be checking my BGLs, taking away my pump is not suddenly going to give me an injection (bad, bad pun) of motivation.
- Scare tactics DO NOT WORK. I’m going to say that again. Scare tactics DO NOT WORK. Also, scare tactics DO NOT WORK.
- The person in charge at all times is the person with diabetes. Let’s be clear about that too. The PWD is up front, directing traffic. HCPs, diabetes organisations, friends and family are there to support the person in charge.
- This is going to sound crass, and I don’t mean it to, but HCPs need to remember that they are being paid to do our bidding. They are providing us with a service. And that means, if we don’t like the service, they get sacked and we find someone who will give us the service we need.
- Threatening to remove a pump is bullying behaviour and it absolves the HCP of any responsibility in the management of their patient. I will never blame my HCP if my A1c is out of range or I am not checking my BGL. I would ask that they don’t blame me and threaten me.
- Deciding to take away a pump because HbA1c is too high is placing far too much importance on the value of the HbA1c! It’s just a number that gives an average. But not much more.
- Also, by using results of an HbA1c check as a reason to threaten to remove someone’s pump is forgetting about the considerable emotional impact of diabetes. Just as an out of target A1c is not a reason to rap someone over he knuckles, an in-target A1c is not necessarily an indication that everything is A-okay.
I know that it is not always easy to be your own advocate, but it’s times like this that you really need to be able to stand up for yourself (or your child), or bring along someone who can. Being clear about what you want and need is important – and that includes being clear about what you won’t accept.