Posted by Zoe Harris
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).
That 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.
For 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.
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.
Mycarematters has been shortlisted as one of 5 finalists in a ground-breaking national competition run by retirement income provider Just Group and the International Longevity Centre (ILC).
The Innovating for Ageing competition was established in January 2018 by Just Group, with support from ILC, to identify innovative solutions to the most common, intractable problems faced by vulnerable people in later life.
From the 77 submissions entered by policy experts, tech innovators and academic institutions, Mycarematters was chosen as one of the 12 strongest entries by the competition’s independent Advisory Board. We then pitched to an expert judging panel and were one of the five finalists invited to attend the Awards ceremony, hosted by the comedian and broadcaster David Baddiel in London on January 31st.
We were delighted to hear the judges’ endorsement of Mycarematters as a great and simple solution to the important issue of digital and advance care planning. They also commended the different formats available (ie online and offline), meaning there are no technical barriers to people using the solution.
To return to Mycarematters home page click here.
When I first came up with the idea of Mycarematters it was very much with people with dementia in mind, having seen my husband experience some fairly dreadful care through ignorance of the things that mattered to him. However, as the service has evolved and undergone trials it has become clear that we are addressing an issue that effects virtually every person undergoing a stay in hospital. It is likely, after all, that anyone spending time in hospital for whatever reason will have moments when they are unable to express their needs or explain their preferences.
The first person that brought this home to me was a healthcare assistant working on a ward where we were trialling Mycarematters. She showed me her Mycarematters keyfob and explained that she had created a Mycarematters profile because, as a coeliac, she wanted to be sure she would not be given inappropriate food in the event she found herself in hospital and unable to communicate.
The hospitals conducting those early trials had initially planned to use Mycarematters purely for patients with a dementia diagnosis. They quickly switched to offering it to every patient / their families on the basis that even the most clear-minded and fit person can become confused and anxious in hospital. They may have been admitted with, or develop, a condition like delirium which temporarily prevents them from communicating, and which can increase the likelihood of adverse events such as falls, through ignorance of their mobility needs.
So the quick answer, to the question as to who Mycarematters is for, is everybody! It’s on that list of things we should all do: write a will, appoint a power of attorney, create a Mycarematters profile. You never know what’s round the corner, and how much better to write down your own needs and preferences when you still can, than rely on friends and families’ best guesses at a later date. (You can update it as often as you like, so you’re not setting anything in stone.)
It is free for individuals to create a Mycarematters profile: go to http://www.mycarematters.org for further information and to sign up.
It’s tempting, isn’t it, when trying to explain something, to keep on using more and more words to get your point across?
We all know how much more difficult it is to say something succinctly than to waffle on. As Blaise Pascal said back in 1657, “I’m sorry I wrote you such a long letter; I didn’t have time to write a short one.”
There are often good reasons for keeping it short, and none more so than in the busy world of healthcare. Families may be asked to provide information about their relative being cared for in hospital, but if the resulting document is pages and pages long the sad reality is that it will rarely get read. Much as the staff want to, they do not have time to sit down and sift out the really important things that will make a difference to the care they deliver.
So when we were developing Mycarematters, keeping it short was an attribute we deliberately retained from the original charts. On those, physical space was the limiting factor but we soon saw how it encouraged people to think carefully and prioritise what was really important. We ask people to do the same when creating a Mycarematters profile online, so that a person’s core needs and preferences can all fit on a single side of A4. In that way, hospital staff will see a snapshot view of the things that matter, and are much more likely to scan their eyes across the printout (or scroll through some brief data online) than rifle through multiple pages.
To return to Mycarematters home page, click here.
We’re very proud to have been selected as a finalist for the Essex Challenge Dementia programme. We’re looking forward to working with Essex hospitals, care homes, carers and people living with dementia to further develop Mycarematters in the coming months.
Do you want to create a free Mycarematters profile for yourself, a relative or your care home residents? Click here
Read the full press release from Essex County Council:
Cabinet Member for Health and Adult Social Care, Cllr John Spence from Essex County Council said:“I am delighted that Essex County Council are at the forefront of this pioneering challenge and have been impressed both by the quality and quantity of entries into the Challenge Dementia Prize.I would like to thank all the judges for taking the day and using their expertise and experience to decide on the nine shortlisted entries. Having seen the range of ideas and solutions I look forward to hearing how these projects develop during the next six months, knowing that all of them are working hard to improve the lives of those living with dementia.”Further information can be found at the Challenge Dementia webpage http://challenge-prizes.essex.gov.uk/challenge-dementia/
The shortlisted projects are:
- The Wayback, The Wayback Team , Hertford
- Home, EPUT NHS and Accenture Liquid Studio, Essex and London
- Happy at Home, Active Minds, London
- Building Creative Communities, University of Essex, Colchester
- Vivify Me, 11 year old boy, London
- Remarkable Lives, Remarkable Tech Ltd, Stroud
- MyCareMatters, My Care Matters Ltd, Horsham
- Communication without waiting lists, eQuality Time, Luton
- How Do I?, NFC Helps Me Limited, London
Pioneered by Essex County Council, Challenge Dementia was open to individuals, teams and companies with ideas for ambitious and innovative products, technologies and services that will enable people living with dementia to remain connected to the people and places around them and to maintain their identity.
We originally designed Mycarematters as a way of reliably sharing a person’s non-medical needs and preferences with hospital staff, wanting to eliminate the delay between admission and collecting the information about what matters to a person, when they can’t communicate those things for themselves.
But of course it works just as well in care homes to ensure everyone interacting with the person is aware of the information they need to deliver person-centred care. There is then the added benefit of a person’s Mycarematters Profile being immediately available in the event the person has to undergo a stay in hospital.
It’s just the same for people being cared for in their own home. It’s ready and waiting for a hospital stay, just in case, but it can also provide visiting carers with a quick introduction of the information they need to provide a more personalised style of care.
A person’s Mycarematters profile can be viewed on any internet linked device but we find that printouts are still the most popular way to display a person’s Profile, and we offer a range of display options to suit all environments: click here for further information…
Wish to create a free Mycarematters profile for yourself, a relative or your care home residents? Click here