Reg’s story

It has been an incredibly valuable experience, during the initial trials of Mycarematters in community hospitals, to sit down with patients and their families and go through the process of creating a Mycarematters record together. Not only valuable for what it has taught me about the Mycarematters tech (that’s the easy bit) but in hearing what is important to people about their care in hospital, and observing the relationship between patients and staff.

One of the first conversations I had was with the lovely Reg* and Betty*.

Reg is 94 and lives with his wife Betty, who is 92. They’ve been married since 1944, when Reg was given two days’ leave from the Royal Marines to marry his sweetheart. Betty told me that Reg is regularly admitted to hospital with kidney infections because he doesn’t drink enough, and that makes him unsteady on his feet and he becomes very confused and even delirious.

In providing me with information to complete a Mycarematters record for Reg, Betty told me he’d already fallen out of bed twice whilst in hospital. At home he always has his walker parked by his bed so he can get to the bathroom without help. That’s not been happening in hospital so I asked Betty if she’d said anything about his walker to the hospital staff. She hadn’t and it was clear that she didn’t want to interfere, it was not her place to do so. But she was quite happy for it to go on Reg’s Mycarematters record.

This was not the only time people demonstrated an expectation that hospital staff know best, that they didn’t want to waste their time with seemingly innocuous information. By generating a Mycarematters record in advance, whether anticipating a hospital stay or not,  those issues are sidestepped altogether.

If I’d had any doubts at all about the value of Mycarematters, they vanished when I was talking to Reg and Betty. Reg is lucky, he hadn’t fractured anything in his falls, but in the future, a quick read by staff of his Mycarematters record might allow him to avoid the trauma of a fall in the first place.

*names have been changed

 

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Trials have begun!

I’ve been on an incredible journey these past few months, the most striking element being the sheer number of people ready and willing to help. Busy people, all with their own agendas but still finding time to share their knowledge and experience. They see the potential in Mycarematters and the difference it can make. It’s a simple concept, people get the idea very quickly and rarely do I have a conversation these days without someone sharing a story about the hospital care they or a loved one experienced that could have been improved had the hospital staff known more about them.

And now we are starting to put Mycarematters through its paces in two community hospitals. I’m talking to patients and their families, inviting them to register and work with me to store the information they’d like to share with healthcare professionals. And I’m talking to staff, going through the process of accessing and downloading a person’s information.

Testing the processes is an important aspect of these trials, but the acid test will be to see whether the increased level of information available to the staff will make a difference to patients’ outcomes.

Those stories I keep hearing rarely refer to the quality of the medical care. We’ve all learned to expect an excellent standard of care from the NHS. But the issues that can cause so much upset are the seemingly small things that can have such a big impact on our quality of life.

Here are just a couple of the stories I’ve been told in recent weeks:

“My Mum has mild dementia and when she was admitted to hospital her infection made her more confused than normal. She was unable to get to the bathroom unaided and the staff didn’t recognise her agitated behaviour as a need for the loo, so she wet the bed. She was therefore assumed to be incontinent and was put into pads. It was a week before I realised what was going on, and once I had made it clear that Mum was not incontinent, the staff helped her to the bathroom.”

“Dad is totally compus mentus but profoundly deaf. In the rush to get him to hospital his hearing aid got left behind. He struggled to hear anything the staff said to him, so they assumed he had some kind of cognitive impairment and stopped explaining what was going on. By the time I got there a couple of days later he was extremely distressed and anxious.”

In both these examples, it is my belief that, had these people been given the opportunity to set up a Mycarematters record and store the appropriate information,and had staff accessed that information, these errors would have been completely avoidable. The staff would have been able to provide more effective care, and the patient would have recovered more quickly and been able to get out of hospital sooner.

Let’s see if these trials prove me right!

The system is up and running if you would like to have a look. All the security features are in place so you can register with confidence. And if you choose to create a Mycarematters record for yourself or someone you care for, please complete the short survey at the end to let us know what you think. Thank you. Go to Mycarematters