2015 was a year of extreme highs and lows for me. It was the year my mother died, having lived with COPD for eight years, and then a few months later I lost my best friend of almost 50 years to cancer. It did feel for a while that someone was picking off my nearest and dearest one by one, my stepfather having died in December 2010 (bowel cancer) and my husband in April 2011 (dementia).
When you add to that a three week hospital stay for my teenage daughter in 2014 I feel that I’ve had my fair share of visiting people in acute and community hospitals and care homes in recent years.
What those experiences gave me, of course, was an opportunity to see some wildly varying standards of, and approaches to, hospital and social care. As an ‘outsider’, I was able to see with fresh eyes what might make a difference.
The first idea I had, soon after my husband Geoff moved to a care home, developed into the range of ‘Remember-I’m-Me’ Care Charts, an initiative for which I’ve won numerous awards. More importantly, it is potentially making a difference to the lives of over 25,000 people in 900 care homes and hospitals.
Job done, I thought. Now that staff have instant access to a person’s needs and preferences there’s no need for any traumatic errors like the ones Geoff experienced (more on that here).
How little I knew! I am of course gratified that the typical phone call has gone from ‘oh, I don’t think the inspectors would like that’ three years ago to, in 2015, ‘can we have some of your charts please, we want to have them in place before our next CQC visit’. Gratifying indeed, but boosting an organisation’s CQC rating wasn’t the challenge I’d had in mind.
I have come to recognise that if the culture of an organisation does not acknowledge the importance of getting to know the whole person, of understanding the value of developing relationships between caring staff and those they are caring for, then you can use 20 different types of communication and relationship-building tools and none will have any impact on the quality of care.
Perfect timing then for UnLtd, the organisation ‘supporting Social Entrepreneurs at every stage of their journey with advice and resources’, to help me take a step back and look at how we could improve our impact. With their help we’ve been able to work on a number of initiatives and I’ll be in a position to talk about the results of that work later in 2016. (I should also add that, from the thousands of conversations I’ve had with staff in care homes and hospitals, it is clear that a person-centred culture does exist in many organisations.)
We’ve also started to consider what adaptations are needed to the care charts to make them work efficiently for people being cared for in their own home; we’re still looking for input on this from carers, both paid and unpaid, and those being cared for: please complete our homecare survey if you have not already done so, and my thanks to those who have.
But perhaps the single most exciting moment for me in 2015 was when I was mulling over a problem and a particularly bright lightbulb started flashing in my head. It was something that had niggled at me ever since hospitals had started to adopt the care charts; I could see that one of their challenges was collecting the data for the charts in the first place. I had attempted to address that with the Pocket Care Chart, as had the Alzheimer’s Society’s with their This is Me document, and there have been other other local initiatives, but they all risk getting left at home, lost or filed. So how does one transmit that information reliably? Answer: via the internet, obviously.
The second it occurred to me it became another one of those ideas that are ‘so simple I can’t believe it hasn’t been done before’. We need to give people a secure place online where they (or their carer, relation or advocate) can upload the non-medical information they want healthcare staff to know about them, and provide a quick and simple method for staff to access and download that information.
Further research revealed that hospital staff take an average 100 minutes per patient to discover dietary preferences, mobility issues, next of kin details and so on. That could be reduced to a couple of minutes where someone’s information is available on the web.
I’ve been beavering away on this project for a few months, but I couldn’t talk about it until I knew we had the funding to build the platform and get it to the stage where we could start trials. Bethnal Green Ventures totally get what I’m trying to do, have provided the initial funding and Mycarematters is out of the starting blocks!
This is a quick 20 slide introduction to Mycarematters (previously Mycaredata)…
I posted it on Twitter earlier this week and it’s been exciting to see such a positive reaction…
There will always be issues and challenges to thrash out, but right now I’m in ‘JFDI’ mode:
I’m quite sure the end product will have gone through a number of evolutions since my first scribbles, but the aspiration won’t change: to improve outcomes for those people who struggle to communicate their needs to healthcare professionals.
Like the charts, Mycarematters is just a tool. If staff don’t see why it is important that they know about the whole person and not just their medical conditions, they will not understand why they should bother with Mycarematters. Which is why a significant part of my work this year will, in collaboration with some excellent organisations already working in this area, be to increase awareness of the importance of getting to know the whole person.
Need you ask why I’m so excited about 2016? Bring it on! Happy New Year everyone.