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My Care Matters blog - July 2018

My Care Matters blog

Learning from patients and families

Our first trials of Mycarematters took place in two community hospitals in Sussex, and before we introduced the idea of individuals creating profiles online, we wanted to test the concept of having single sheet facts-at-glance profiles available for staff to get to know the people they were caring for.

So we asked staff to invite relatives to complete paper profiles for their loved ones.

Jessy had been transferred from the local acute hospital after a fractured neck of femur. This feisty lady was 83 with a known history of Alzheimer’s disease.

On the ward, Jessy would chat loudly to staff and other patients, asking over and over ‘How are you then, not been in for a while’.  This went on for many hours at a time. 

Following a visit from Jessy’s niece, when a member of staff asked her to complete a Mycarematters profile for Jessy, it turned out that she had previously been the landlady of a pub, spending hours talking to customers.

Suddenly Jessy’s behaviour made total sense. As a health care assistant on the ward said, “It totally changed how we saw her, the talking all the time had seemed quite irritating sometimes, and we didn’t know why she was asking us the same things all the time.

To be honest, just knowing who someone is makes so much difference; I see her differently – in such a good way".

I had some conversations with patients and relatives myself, and found it an incredibly valuable experience, to go through the process of creating a Mycarematters profile together.

Not only valuable for what it taught me about how we needed to approach the online version 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 profile 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 profile.

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 profile 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 profile might allow him to avoid the trauma of a fall in the first place.

(Please note that all names have been changed to protect confidentiality).

I look forward to providing an update next month on how our trials are getting on in Essex!