Chris Markiewicz's Blog
Every Monday – thoughts, observations and ideas that hold up a mirror to who & how we are

Separate worlds

“There doesn’t happen to be any RP specialists on here does there? “

This quote probably leaves you a little baffled. It’s actually a comment that was posted on the retinitis pigmentosa (RP) Facebook page. People who have this eye disease (including myself) have the opportunity there to share experiences, post questions, read up on the latest medical advances and so on. Personally, I find it an indispensable lifeline.

The post went on to ask a medical question and the enquirer was subsequently  referred to a charity helpline  that supports those with the condition. There was no response from any medical practitioner.

It’s as though the world of the “sufferer” is a totally separate one from that of the clinician.

I can’t help thinking it would be a good idea if medical practitioners joined social media groups run for the people who have them and their families/carers.

I can’t help thinking that this would offer a deeper insight into how it is to live with a particular condition.

I can’t help thinking this will then help doctors and others give better treatment through a deeper empathy for those suffering.

I recognise that, perhaps there needs to be a professional distance here. However, it may be about the practitioner checking in and simply reading posts from time to time (perhaps under an assumed name), thus being more connected with the human aspect of a condition, albeit in a relatively passive way.

I was at Moorfields a week ago for an annual eye check up. The doctor, a young Spanish woman was lovely – very caring and interested. I told her about the simulation spectacles people with RP can obtain for their friends or relatives to try out, thus giving a sense of the challenges of reduced vision. She was not at all aware of the existence of such spectacles, let alone ever worn any!

All her training will have probably been clinical with minimal, if any, attention paid to how people may feel with such a condition and the day to day difficulties it poses.

Perhaps I’m being unfair. This particular doctor was warm and welcoming, but others have not been and seem to focus purely on the “science” of what they are doing.

Just as lay people will use the internet to educate themselves on the medical aspects, so the medics could equally educate themselves further on the human aspects, thus bringing these separate worlds closer together. Surely, that can only be for the good.

And, the best thing? It costs zero!

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