Mycarematters wins Outstanding Product Award for Dementia Care

We were delighted to be selected from a shortlist of 5 organisations to win this year’s Outstanding Product Award in the National Dementia Care Awards.Winners

Winners of the National Dementia Care Awards were presented with their trophies by John Middleton at a Gala Night held on Thursday 9th November at Doncaster Racecourse.

The National Dementia Care Awards is an annual event organised by The Journal of Dementia Care, a multidisciplinary journal for all professional staff working with people with dementia, in hospitals, nursing and residential care homes, day units and the community. The awards were created to recognise the very best people in the dementia care sector, whose exceptional work and contributions make better, person-centred care a reality. There were 16 categories to enter overall and there were four or five finalists in each category with two independent judges. For more information and all categories, please visit or to create a Mycarematters profile click here.


What’s different about Mycarematters?

Three aspects make Mycarematters stand out from the other interventions designed to improve person-centred care in hospitals.

Brevity – few of the hospital staff interacting with a patient will have time to go to their file and read what might be considered ‘non-essential’ information. But put a single page of facts-at-a-glance in their line of sight and they’ll be able to see a patient’s likes and dislikes within seconds.

Immediacy – when a person arrives on a ward unable to communicate, it might be a day or two before family members visit or staff get the opportunity to contact them to find out more. Until then, staff will be unaware of what matters to the patient which can lead to mistakes, as well as confusion and anxiety for the person. If a Mycarematters profile has been created in advance of a hospital stay, it can be brought in in paper form, or is available for staff to view or print out from any internet linked device.

Transferability – a person’s Mycarematters profile can be accessed from any internet linked device with their name, date of birth and Mycarematters code. So, whether moving between wards or hospitals or transferring to residential care, the person’s Mycarematters profile can immediately be viewed onscreen or printed out.

We are working hard, not only to raise awareness of the importance of creating a Mycarematters profile, but also to encourage hospitals to embed the use of Mycarematters into their procedures. Create profiles now, for yourself and the important people in your life, and help spread the word!

Click here to create a Mycarematters profile.

Click here for further information on how your hospital might use Mycarematters.




Mycarematters in the papers

We had the opportunity to do some advertising in a couple of the national papers recently, as there were some tempting deals in recognition of World Alzheimer’s Month. It’s easy to get bogged down in the day to day firefighting and minutae of running a project like this, so an advertising campaign is the perfect opportunity for us to remind ourselves of the bigger picture: our goals and aspirations, who we most need to reach, what outcomes we are seeking.

Design team meeting 180717

After a couple of brainstorming sessions with our fabulous designers, the Mycarematters Design Collective, this is what we came up with:

In the Guardian on World Alzheimer’s Day we published this…

Guardian ad 210917

And in the Mail on Sunday’s Lifestyle section a few weeks later we went with this…

Mycarematters MoS advert 151017

We asked the ‘Twitterati’ for some feedback and ‘Stan the runner’ in particular got a lot of comments: ‘Very touching and warm’, ‘visually striking’, ‘captures the essence of the person’, ‘helps us see beyond the illness and distress’, ‘simple to read, easy to understand’, ‘so very true: everyone needs to understand how a little chat can go a long way’, ‘brilliant idea: need more of this’, and more.

It’s unlikely to be something we do on a regular basis but it was a useful exercise and reaffirmed for us how vital a service like Mycarematters is to help encourage a person-centred approach for ALL patients.

To create, update or retrieve a Mycarematters profile click here.

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.



September review: learning and sharing

September seemed to be a relentless succession of exhibitions, conferences, talks and presentations, large and small, for Mycarematters founder Zoe Harris…

“From the Georgian splendour of the RSA to the cramped office of an NHS ward for the elderly, and everything inbetween, it’s been a month of learning about some of the fabulous work that is going on in health and social care, and sharing my aspirations for Mycarematters with large and small audiences.

“One of the highlights of the month was the NHS Health and Social Care Innovation Expo. This is a huge event presenting that inevitable dilemma of which of the numerous simultaneous presentations to attend. I could only be there on one of the two days, and the event I was most disappointed to miss was the presentation of the Kate Granger Awards. I had a heart-warming exchange of emails with Kate, founder of the #hellomynameis campaign, after her talk at the NHS Confederation conference in 2014, where she referred to her four core values:

  • Communication
  • It’s the little things
  • Person-centred care
  • See me, not just my disease.

“So obvious, so important, so often missing… particularly in our care of older people. I went on to read Kate’s two provocative and moving books, reviewed here. Kate died seven weeks before the 2016 Awards, the world is a poorer place without her.

“A meeting I always enjoy is the dementia working group at Sussex Community NHS Foundation Trust, chaired by dementia lead Lucy Frost. Lucy brings together a variety of professionals and people with experience to ensure the Trust is doing the right things to provide best support for people with dementia, and their carers. I attend in my capacity as an ex-carer and there is always another carer, and sometimes the person they are caring for, in attendance as well. The professionals clearly value and respond to our input, and I’ve never felt we are invited for appearances’ sake. But then, with Lucy in the chair that’s hardly surprising. Her passion for delivering high quality care to people living with dementia is relentless.

“There were a number of excellent presentations at an event called Understanding Dementia, hosted by University of South Wales in Pontypridd, where we had accepted the offer of a stand to raise awareness of Mycarematters. Perhaps the most memorable speaker was Karen Kitch, who lives with dementia, aged just 53. Karen relies on her phone as a backup memory, creating reminders for everything she has to do. The award-winning Private Eye cartoonist Tony Husband has that fabulous knack of being able to entertain his audience whilst informing them at the same time. Tony shared stories about his Dad’s experience and the book it inspired: “Take Care Son: The Story of my Dad and his Dementia”.

“Later in the month I found myself in the impressive surroundings of the Great Room of the RSA. It was in that very room in 1877 that RSA fellow Alexander Graham Bell gave the first practical demonstration of the telephone, but on this day we were debating the NHS initiative: Health as a Social Movement. ‘NHS England and partners will develop, test and spread effective ways of mobilising people in social movements that improve health and care outcomes…’ I applaud the sentiment, but surely social movements are spontaneous events, springing up from the grassroots, instigated by individuals who care enough about something to try and make it happen. Can a successful social movement really be initiated from above? Consider Kate Granger’s #hellomynameis campaign… surely that’s a social movement if ever there was one.

“Nevertheless, it was a privilege to hear from Jos de Blok how he has grown his Dutch homecare organisation Buurtzog in the Netherlands from 4 nurses in 2006 to the current  10,000. His model has attracted a lot of interest in the UK and appears to have a whiff of Marmite about it, you either love it or hate it. And Helen Bevan is always an inspiration, with her impassioned call for disruptive co-creation and assertion that ‘large diverse groups make better decisions than smaller groups of experts’. Helen’s talk brought to mind a book I read a while ago called The Wisdom of Crowds by James Surowiecki. Thought-provoking stuff.

“I was invited to speak at Community Care Live 16 about my experience as a carer for my late husband. I’ve been doing similar talks for a while now; Geoff’s experience of living with dementia could have been much less painful if I knew then what I know now, and if I can share some of the knowledge I gained with people who are attempting to support others in that position, it might help them avoid some of the pitfalls.

“That’s just a flavour of the numerous events that took place in a particularly crowded month. Occasionally I get troubled by the possibility that the people who attend the vast majority of exhibitions and conferences are not the people that really need to be there… they already have a desire to learn and improve their practice. It’s those who never go to such events, who are not exposed to new ideas and thinking, who most need to be there. Twas ever thus, I suspect.”


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