Zoe Harris is creator of the multi award-winning Remember-I’m-Me Care Charts and Mycarematters, methods of sharing a person’s non-medical needs and preferences when they are unable to express those things for themselves. See www.carechartsuk.co.uk and www.mycarematters.org.
When I created that first Care Chart for my husband all I had in mind was to share the things he’d have talked about if he’d been able. I had no idea that within a few years over a thousand care homes would have adopted variations of that original chart. And I certainly had no inkling that we’d be taking it online and helping hospital staff deliver person-centred care as well.
Geoff had advanced dementia and was being cared for in a care home for what turned out to be the final 13 months of his life. When he first moved in, the manager built up a detailed care plan but I was concerned to see it filed away. Not having a medical or social care background I assumed there was a procedure to ensure all staff knew about the things that mattered to Geoff. Just in case, I made a point of mentioning a couple of things to the staff I met on my daily visits.
One of these was that his chair needed to be positioned against the wall so he didn’t push it over; something had gone wrong with his sense of balance. One weekend, back home after visiting Geoff in the morning, I got a call to say he’d taken a fall. Someone hadn’t got the message, they’d pulled his chair in to the room and he’d tipped it over. It wasn’t their fault, there was just no reliable mechanism by which to share information with everyone interacting with him.
So I started scribbling notes and sticking them on his bedroom wall. I now know that research has shown that when a professional knows something about an individual at a personal level, they are likely to feel a greater level of empathy for that person, and that with empathy comes a better quality of care. At the time it just made sense that Geoff would be better cared for if everyone interacting with him knew more about him.
I soon converted my notes into a wall chart, and when the manager saw it she wanted more for her other residents! That was when I realised a simple tool like that had the potential to transform the care of thousands of people in Geoff’s position.
We ran a trial and after six months and a few changes I started showing it to other care homes. The one consistent concern raised was that of confidentiality. During the trial this had never been an issue for families: they were far more concerned that their loved one’s needs and preferences were made known to the carers. Nevertheless, I could see it was a potential sticking point so I produced a version I called the Twist-N-View: all you see is an attractive picture on the wall, turn it over and the information is on the reverse.
The Twist-N-View ticked all the boxes for those care homes that had been hesitating and variations of those original charts are now in use in over 1,200 care homes throughout the UK.
When hospitals started to take an interest and began to use the charts, I realised that the challenge for them lay in collecting the information in the first place. The perfect scenario would be if patients came in with their information already available.
During my research I encountered a number of paper tools attempting to achieve this, but they all had their drawbacks. They tend to be too long and busy staff admit they don’t have time to read them. They get filed, so the people who spend most time with the patient like health care assistants, volunteers and housekeeping staff are unlikely to see them. And they get lost or left behind, so families who put their hearts and souls into filling them out feel they have completely wasted their time.
To address those shortcomings I came up with Mycarematters, an online tool where people – or someone on their behalf – can create a profile which can be viewed or printed out from any internet linked device, and we are asking all hospitals using the system to have a method of displaying the printout behind the bed.
Because it’s going to take a while to get people on to the online system, and of course not everyone is willing or able to use the internet, we have produced a blank version of the Mycarematters chart that hospital staff can invite patients / families to fill in by hand. This hybrid method of digital and paper is now in use in hospitals in five UK counties and already generating excellent feedback.
In the next issue I’ll share case studies and examples of how Mycarematters is playing a much wider role than I initially anticipated.