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


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, 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