Small changes

Time slows when the lights are fluorescent and the days are punctuated by the rounds of the medical staff.

My head of studies for my PhD is a woman who is internationally known for her creative-design- person-centred approaches to dementia care. She’s an Occupational Therapist, with a background in art psychotherapy, and a PhD in using Art & Design methods in enhancing care in care-homes.

So I was super stoked when she asked me to be part of 1 of her many projects (some paid work on top of PhD). She invited me to be part of a project where we will design a Dementia friendly eye clinic. In real life.

Yesterday we had a meeting with some service users (I hate this term); a carer and his wife who has dementia. We spoke about all of their experiences of the eye clinic, from everything from leaving home and parking all the way through to leaving at the end.

There were many flaws in their care, some avoidable, some just a mistake, some just part of the design flaw within the pathway.

What I discovered when we looked back at our notes was that the things we could make better for people with dementia – would actually make these things better for EVERYONE who uses the service. How crazy is that?

I remember a few years ago, I had some crazy neurological stuff going on and it really effected my eye sight – I’d get like flashes of white light in my vision and I lost some of my peripheral vision. I had to see the eye doctor a bunch of times.

It was crazy just how unusual and difficult it was to go through that pathway. Eye drops that sort of itched, and we’d all sit staring at a wall, packed in like a crowded bus down a dim dirty coloured cream corridor. You couldn’t see anything clearly, but there was loads of small text leaflets teasing you to try and read them on the walls.  Your eyes hurt from the light. When it was time for anyone to call you, you’d get up and not be able to see who and where they were calling you from. Then the actual examination of the eye is uncomfortable – you have to lean onto some medical equipment – and being small, my feet didn’t touch the floor, there’s no arms on the chair & you’r completely unsteady – and my neck hurt from stretching it out across a small table to sit my chin in the face of the eye doctor.

It felt undignified, and intimate and vulnerable and stupid all at the same time.

Once they made me sign to consent to something I couldn’t even read because of the eye drops.

And then when it’s all over, you leave – by feeling the walls around you – and trying to remember which way was out. When you finally make it back outside – the light is bright. But in an unfamiliar way – and navigating the world through blurred vision enhances a crazy headache of sorts.

That was my experience as a young-un. Someone who has pretty decent eye sight (or did).

Now imagine that experience for someone who struggles to convey pain, or issues. Who is confused? Who has learning difficulties, short-term memory loss. Who can’t read?! 

I can’t imagine how disorientating and how scary and uneasy it must be.

I’ve been missing my clinical aspect of being a radiotherapist recently.

I think it’s the team work and the patients I miss the most. So I’m really looking forward to being part of a team, working with patients and their families, in a clinical setting again – but this time my main aim will be to come up with & test & prototype cool, person-centered creative & critical solutions — whilst at the same time learning some cool new researcher skills. Mostly how to get something you make, and apply it and embed it into the system. This is a skill I am really missing.

From just 1 meeting, I’ve already paralleled some similarities  of things that could change within radiotherapy and the dementia care pathway — there’s just such a long way to go. But, I’m excited!

We already have 4 areas of focus, and ideas to prototype. It’s too early to share or know if they’re any good or useful. But I can’t wait to share with you guys our future work on this!