Should personal information be on view?

The carer’s eyes lit up with delight as he spotted that Geoff had been an RAF fighter pilot in his early career. John was obsessed with planes and he chatted away to Geoff about things that meant nothing to me but clearly sparked a response in Geoff because he was beaming and nodding his head.

I’d always felt that Geoff, despite his dementia by now being quite far advanced, was able to understand more than people thought. Because he was generally non-responsive people stopped trying to engage him in any meaningful way, but here he was, becoming quite animated, lifting his head up and making eye contact.

John only knew about Geoff’s flying career because I’d made a note of it on the Care Chart on his bedroom wall. Until I’d put the chart up that kind of information would have remained buried deep in his 100 pages plus care plan in a file on the shelf in the manager’s office. I’m sure John would have searched for a way to engage with Geoff because he was that kind of carer, but this give him an instant way in, and I suspect both of them will have experienced a feeling of wellbeing that lasted long after the brief conversation ended.

It is experiences like those that lie behind our insistence that a person’s Mycarematters profile is visible to all those interacting with them, whether in hospital, in a care home or in their own home. Geoff was in a care home and his care chart was on view to all staff members and visiting professionals. It was particularly helpful to bank or agency staff who had little opportunity to get to know the people they were caring for.

It is even more important during a hospital stay, which can be a highly stressful and confusing experience for someone living with dementia, to provide staff with a way to meaningfully engage with the person they are caring for. Mycarematters enables staff to see the person beyond the dementia, but if that information is hidden away in the file from the people that really need it: the housekeeping staff and volunteers as well as health care assistants, nurses and doctors, those opportunities for meaningful engagement that result in a release of healthy endorphins aiding a quicker recovery, will be missed.

This approach has recently been endorsed by NHS Improvement in their Dementia Assessment and Improvement Framework which recommends that key at a glance information is displayed above the bed (with person’s or carer’s agreement): preferred name, likes, dislikes and enhanced care needs (without breaching confidentiality).

Display Board website 1118That last point about confidentiality seems to be a bit of a challenge: can one display this information and not breach confidentiality? We believe we do achieve that with Mycarematters. When displayed with something like our Display Board, a person’s Mycarematters profile is legible only to those standing reasonably close. In a ward environment it cannot therefore be read by people just passing by.

MCM TNV Image websiteFor those who want still further confidentiality we offer the Twist-N-View hanger which displays an attractive picture on the front with a pocket for a person’s Mycarematters profile on the reverse. So the information is readily to hand but can be turned to the wall when not needed.

We heard a lovely story from one of the first hospitals using Mycarematters, where a member of housekeeping staff serving tea to an elderly lady living with dementia noticed on her Mycarematters profile – on display behind her bed – that she had been brought up on a farm. The member of staff had also been brought up on a farm and spent a delightful few minutes reminiscing with the lady about old times. The details of that conversation may have slipped from the patient’s memory within minutes, but the sense of wellbeing will have remained with her for a lot longer. Those precious moments don’t happen when information is buried away in the file.

Link / back to Mycarematters website.

Zoe Harris cared for her late husband Geoff at home for about five years before he moved to a care home for what turned out to be the final 13 months of his life. It was his experience of hospital stays, respite care and his final months living in a care home that led Zoe to develop the Remember-I’m-Me Care Charts and then the online service Mycarematters.

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Why do we call Mycarematters a ‘system’?

Mycarematters is much more than ‘just’ an online platform. I’ll explain what I mean by that, but first a bit of background.

Initially, we produced the Remember-I’m-Me Care Charts, simple wall charts to share a person’s needs and preferences, which have been adopted by care homes throughout the UK. When a care home manager commented how useful it was for the paramedics to read it before transporting a resident to hospital, we wanted to find a way for that information to travel with them. Our first solution was the Pocket chart, which addresses some of the shortcomings of the other solutions available. It is designed to fit in a pocket or handbag, stand up by the bedside and it’s shape and size make it difficult to file it away. It also retained what I believe to be a vital feature of all our tools: it is a quick facts-at-a-glance read.

The Pocket Care Chart is now widely used, but it does not address the issue of information getting lost in transit or left behind. So that’s where Mycarematters comes in, utilising the benefits of the internet to store and share information, and making it accessible via any internet-linked device.

A person’s Mycarematters profile can be viewed onscreen, but limiting it to that loses an important feature of the care charts: ensuring that anyone interacting with the person has access to their needs and preferences. At some point we may be able to set up tablets next to hospital beds (it is unlikely in the foreseeable future that all porters, volunteers, housekeeping staff etc will be issued with any kind of electronic device) but for now what hospitals are telling us is they need printouts.

The question then arises as to where the printout should go. I am convinced that it needs to be in everyone’s line of sight. Even a single-sided sheet of facts-at-glance is less likely to be seen if it’s consigned to the file. (I was delighted to see that NHS Improvement agreed with this principle in a recent report.) Every member of hospital staff has a role to play in maximising the quality of care received by a patient, so it stands to reason that every member of staff needs to understand what matters to the patient. Few staff will have the time – or feel they have permission –  to go to the patient’s file for ‘non-essential’ information, so we have a developed a number of solutions to display a person’s Mycarematters profile behind the bed, many of of which are now in use in different hospitals.

So, back to the question of why we are calling it a system. It’s going to take quite a while before every person at risk of a stay in hospital has a Mycarematters profile in place in advance of a hospital stay, and there will always be some people reluctant to use an online service. They should not be denied the benefits of having a Mycarematters profile, so we are providing hospitals with blank forms that can be completed by hand by families, volunteers or staff and displayed in the same way. We are now working on ways to digitise those handwritten profiles, with the patient’s permission, so that it can be available for future stays in the same or other care settings.

So the Mycarematters System is a hybrid of digital, paper and display solutions, designed to enable the widest number of people to reap the benefits of having a Mycarematters profile, whether on- or off-line and regardless of the care setting.

If you feel there are ways we can improve our service we’d love to hear from you: click here to email us. If you work in a hospital or other care setting and would like to use Mycarematters please click here. And if you’d like to create, update or retrieve a Mycarematters profile please click here.

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

 

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