Excluded From Power – a Guest Post by Renza Scibilia

This post was originally published at https://diabetogenic.wordpress.com/about/

I loved this post so much, I decided to re-post it here. You can see why. It followed from a frustrating Twitter dialogue that I was having. Renza has said everything I tried to say…. much better. You can also find Renza (or ‘Diabetogenic’ as she likes to be known, at Twitter on @RenzaS)

Saturday afternoon I was flaked out on the sofa, the Winter sun shining palely through the front window. It had been a cold day and I’d been dealing with an unpleasant and tedious head cold, so I was enjoying the comfort of the house, a dog snoozing on my feet helping to keep me warm.

I was lazily scrolling through some things that I’d missed on Twitter and I stumbled across a protracted twitter exchange that began with this tweet:

Fair point. And reading David Gilbert’s Twitter feed and skimming through his blog, his commitment to patient-led healthcare is strong. He has a lot of experience fighting for the rights of healthcare users to be true partners in the system.

I was interested in the commentary that followed after Partha Kar, an NHS clinical director, quoted the tweet suggesting that things are different in the diabetes world. You can read that thread here.

I struggled with the exchange, feeling a little discomfort when every point made by the original poster was almost dismissed with a ‘but we are doing better’ comment, which completely and utterly missed the point.

I typed a couple of quick responses, deleting all of them. My head was foggy and I was not sure that my thoughts could be condensed in 140 characters or fewer. But I was trying to say that while I actually agree that ‘patients’ do have very limited ‘power’ and are often actively excluded from processes, that isn’t the point. For me, the discomfort was stemming from someone’s personal experiences being rejected by someone who is actually not in the same position – or rather, by someone who holds a position of responsibility in the very system being questioned.

Let’s reframe it this way. There is a gender pay gap that continues in every industry. Women are significantly under-represented as Company Board Directors, as CEOs, and in politics. Health outcomes for women are worse than they are for men. As a woman, I am conscious of the imbalance; I have fought for equality for as long as I can remember; I see the discrimination; I have experienced the discrimination firsthand.

Are there initiatives in place to try to address these gaps? Yep. Is the situation improved today as compared with 100 years ago? Perhaps. Are there men who are fighting for the rights of women? Of course there are.

But does that mean that women who are affected by the imbalance should have their (our) concerns and experiences dismissed because some are ‘trying to make a difference’? Absolutely not.

It is the same in healthcare. Just because there are some dedicated people steadfastly working to support and deliver a more person-centred, inclusive approach with its foundations in true partnership doesn’t mean that the problems are not still there. And it certainly doesn’t mean that we should stop paying attention to those who speak up about the inequality.

If people are feeling excluded – especially people with 30 years of experience in health advocacy, a Twitter following and a blog – we need to believe people are being excluded.

Just as it is not the place for men – even men who might be unequivocally feminist in their words and actions – to tell women that we need not feel discrimination because there are people committed to levelling the playing field, it is not up to HCPs to question the experience of healthcare consumers when we say we have no power and no ability to influence.

For the record, I agree with David’s original tweet. How much power do healthcare consumers really have in shaping healthcare? How much opportunity is there to truly influence the way the system, activities and programs are designed? In fact, how much of the system, and how many of the activities and programs are co-designed?

If we look at diabetes, how many positions are dedicated specifically to people affected by diabetes on Boards, expert reference groups, working parties, organising committees (etc.)? Can you think of an example when the split between HCPs and people with diabetes was equal?

And finally, a thought on language. The word ‘patient’ was used throughout the Twitter discussion and I believe it is problematic. It’s not a word I use; I don’t refer to myself that way. The Diabetes Australia Language Positions Statement advises against the use of the word because it ‘implies the person is a passive recipient of care, rather than an active agent in his or her own self-care’.

In a discussion about people feeling they have no power, using a word that clearly diminishes the role and involvement of the central person in the healthcare equation speaks volumes. At least I think it does.

 

 

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