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.

“It’s a brilliant idea…”

We could not have asked for a more positive response to the Mycarematters system during our trials at East Surrey Hospital (Surrey and Sussex Healthcare NHS Trust). The Display Boards were still being fixed  in place behind the beds in two wards, when a visiting daughter commented: ‘It makes Mum a person again’. And staff ‘got it’ immediately, appreciating the value of the information being conveniently to hand and accessible by everyone interacting with the patient.

We chose to introduce a hybrid system of paper and digital, because not everyone wants to use the internet or has access to it, and it is vital that everyone who wishes to create a Mycarematters profile for themselves or their loved one has the opportunity to do so. The Display Boards allow the profile, whether printed out or written by hand, to be referred to at-a-glance, and also provide space to write further notes, and to display a photo.

Lorraine Kutner, from Redhill, who has been visiting her dad, John, said: “I think it’s a brilliant idea because dad is not able to express his likes and dislikes, what kind of person he is. The board shows his preferences from music to food, a little bit about his personality as he is a very private person, which is important for hospital staff to know. I think it’s a really nice insight into my dad.”

Of course, creating a record of a person’s likes and dislikes is not a new idea, but where the Mycarematters system differs is in enabling the information to be a) available from the minute a person is admitted to the ward and b) quickly and easily accessible to all those interacting with the person.

To achieve the first point, it is important that people are made aware that they can create a Mycarematters profile in advance of a hospital visit, and to either keep a printout in their hospital bag or ensure that their Mycarematters code is easily visible (we offer personalised keyfobs for this purpose). Creating an online profile has the advantage of being able to be updated and reprinted whenever necessary, and can be retrieved from anywhere in the world with the person’s name, date of birth and Mycarematters code.

And for the second point, we have designed it to fit on one side of an A4 sheet and have created a number of display options to ensure it can easily be printed out and viewed by everyone interacting with the patient. (It can also be viewed on any phone, tablet or laptop and we shall be working with hospitals to integrate with their IT systems, but that will not happen overnight.

If you work in a hospital where you feel Mycarematters could help with your person-centred care, please get in touch. And if you are an individual anticipating a hospital stay at some point (and aren’t we all), or care for someone who struggles to communicate, then do create a Mycarematters profile (it’s free!), and be sure to bring it to the attention of hospital staff in the event of a hospital stay.



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


Proud sponsors of a great campaigner…

Lots has been going on behind the scenes at Mycarematters: refining the tech, ongoing trials in community hospitals (more on both shortly),  but all was put on hold recently for the Leeds marathon when we followed the mile on mile progress of the fabulous Joan (Jo) Pons Laplana who many will know via Twitter (@thebestjoan).JoPonsLaplanaMCMsnip2

Jo was raising money for Cavell Nurse’s Trust and devised a fabulous formula of being sponsored for every mile of the Leeds Marathon, as well as inviting sponsorship of his running vest (we’re that yellow flash below Jo’s ribs!). Jo then not only ran the marathon but conducted his own tweetathon en route!

Jo was kind enough to put Mycarematters through its paces and has given his permission for us to provide access to his Mycarematters record, so if you’d like to know what he prefers watching on TV, whether he’s got any pets and what not to serve him if he comes round for dinner, go to mycarematters.org, click on Retrieve Info and type in Jo’s details: Firstname: Joan   Surname: Pons Laplana   DofB 27/03/1975    Code: 9244497576 .


Then please take a moment to consider how useful that information would be to healthcare professionals if Jo was admitted to hospital and was unable to communicate his own needs and preferences. Not to treat a medical condition – his medical notes cater for that – but to treat the whole person, an approach that is increasingly understood to speed up recovery and improve outcomes.

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