Covid-19 – our response

At Mycarematters we have been discussing what our approach should be in response to the current situation and how we can best serve the community, in the knowledge that it might be a number of months before normal activities can resume.

We would usually be working with hospitals and care homes, attending carers’ groups and other community events to introduce Mycarematters and the new My Future Care Handbook. Those activities are obviously impossible for now, but we are conscious that our products and services are relevant and helpful at this time, so we shall continue to raise awareness and provide such free resources as we are able via social media. This will include a PDF of the Mycarematters profile for anyone to download, plus other information and forms from the My Future Care Handbook to help people take informed decisions around their future care.

We are proud of our policy of proactively seeking out and sharing useful advice, resources and general information on Twitter, of relevance to health and social care professionals and individuals, and have every intention of continuing to do so, through and beyond these current challenging circumstances.

As a not-for-profit social enterprise, our primary purpose is to make a positive difference to people’s lives and to be financially sustainable whilst doing so. Much as we would love to, we do not have the funds to provide all of our products and services for free, but we are actively seeking partnerships with larger organisations to enable us to deliver them at the lowest possible cost. If you think that you / your organisation may be able to benefit from such a partnership, please get in touch!

Return to Mycarematters home page.

My Future Care Handbook

It’s taken dozens of interviews, conversations and consultations, hundreds of survey responses, umpteen articles, reports and books and numerous conferences… and finally we have something to show for it all! Our all new My Future Care Handbook is now available, a fully comprehensive and interactive workbook to help people think about, make and share decisions around their future care.

Originally we set out to produce a guidance tool for health care professionals to help them initiate conversations around advance care planning. However, a major part of Mycarematters’ mission is to empower and engage individuals so as to enable them to take an active role in their own care. It therefore quickly became clear that we should first and foremost be putting this information into the individual’s hands. It needed to be a jargon-free easy read, taking an unthreatening and straightforward approach to what can, for some people, be a challenging topic. Our reviewers think we have got it right:

“Lovely clear, step by step guidance to follow”      “It is user friendly, simple and not intimidating”
 
During our research we learned just how difficult everyone finds it to broach the subject of end-of-life care. Strange, isn’t it, when it’s the one thing that is going to happen to absolutely all of us? And by not discussing how, where and with whom we wish to spend our last days, whether it is quality or quantity of time that is more important to us, we leave our families in an awkward position of not being sure what we’d have wanted, when we may have lost our capacity to make decisions for ourselves. It is said that a good death means a good bereavement, and who would want to make it even harder than it already is for their family?
By providing clear and concise information with practical tasks, action lists and forms to complete, the Handbook offers a gentle and unthreatening way to start a really important conversation. After all, despite some people’s belief to the contrary, talking about it really doesn’t make it more likely to happen!
 
Our research also revealed how much confusion there is about the decisions available to us regarding later life generally. So we set out to cover all the topics that we might want to consider as we approach our later life, with the focus just as much on how we can live well as how we might die well. By making it relevant even to those of us who have yet to face our own mortality, it encourages us to start thinking about these issues much earlier than tends to be the case.
We found a lot of wonderful materials both online and in printed form, but none that put it all together, in an easy-to-use format, so our goal was to provide a resource that covers it all, and here, again, our reviewers are approving:
 
“It is so comprehensive and an absolute mine of useful information.  It will be really helpful to have all of this information in one place…” “There is so much useful information in it!”   “I really like this and the way you have pulled everything together. There’s nothing else out there that does anything like this.”
 
We offer bulk prices for health and social care organisations, hospices, care homes, home care services and community organisations running events like death cafes, with the option of creating copies in your own branding if you wish.
Thanks to the support of Crawley Borough Council and Healthwatch West Sussex, we are able to offer copies to residents of West Sussex for just £4.95 per copy plus P&P (whilst stocks last). Use this discount coupon: WSxHandbook when you check out online. This offer is limited to one Handbook per household. If you wish to order more, please email us on info@mycarematters.org to explain your circumstances.
Buy your copy now, so you can plan for tomorrow and live for today!

Planning for the future matters

Beth Britton, award-winning campaigner, speaker and expert in ageing, health and social care talks about her own experience of future care planning and reviews the soon-to-be-released My Future Care Handbook…

Much like most people who are reading this blog, I don’t like thinking or talking about a time when I or someone I love might be very unwell, lack mental capacity or be approaching the end of life. Yet as my dad always said: “There are only two certainties in life; death and taxes.”

As you might have guessed, my dad was a bit of a pragmatist, which was helpful in terms of dad openly telling us details like where he wanted to be buried long before that time arose. But my dad’s pragmatism didn’t extend to writing down details of his future care wishes, probably because he didn’t expect to spend the last 19 years of his life with vascular dementia.

Dad’s dementia, of course, meant that he eventually lost mental capacity, and like many families, because we neither foresaw this nor had any advice that it would happen, we never instigated any future planning with dad. The result was that dad had no Power of Attorney, no written plans for the type of care he wanted (or didn’t want), and ended up spending the last nine years of his life in three different care homes before he died in April 2012.

Given that my dad was a very private person I don’t think that he would have chosen to become a care home resident, but sadly without documentation those decisions were taken out of our hands by doctors and social workers, and we were left to make the best of the situation. Once dad was in his first care home the trail of paperwork began, and over those nine years countless care plans – including end of life plans – were made, mostly with our input, but often what we contributed amounted to guesswork as we tried to imagine what dad might want. Yes, we knew dad better than anyone, but there is still no substitute for the person’s own voice.

To put this into perspective, the only document from the My Future Care Handbook that we ever had for my dad was a Do Not Attempt Cardiopulmonary Resuscitation (DNR as it was abbreviated to back then), and that was only because the GP at his care home came to speak at one of our Relatives’ meetings and discussed dad’s increasing frailty with us afterwards, recommending that we agree to a DNR which the GP then signed.

In the end did it matter that we didn’t have more documents? As dad’s life ebbed away and in the aftermath of his death http://d4dementia.blogspot.com/2012/06/end-of-life-care-very-personal-story.html in many ways it didn’t, but there is no doubt that having documentation of someone’s personal wishes takes the guesswork out of answering all of the questions you’re asked at what is an absolutely awful time.

These issues feel like they’ve come to greater prominence in the nearly 8 years since my dad died, and I know that the My Future Care Handbook is the culmination of a huge amount of research and work that Zoe, her Mycarematters team and the many professionals who’ve supported it have put into creating what is a fantastically comprehensive resource.

The Handbook is literally a one-stop-shop for anything and everything future care related, and in my feedback I struggled to find much more to recommend for inclusion. What makes this resource particularly useful is how accessible it is. It takes what is a really tough topic and makes it as easy to address as it’s ever going to be.

Of course all the important legal elements are within the Handbook, as well as the guidance multidisciplinary health and care professionals would need to support someone effectively, but it was the less obvious details that I really liked. The ‘Bucket List’ and the ‘Create A Play List’ suggestions were two of my favourites – these are more ‘fun’ activities that make the heavier legal elements easier to approach. And, as you’d expect, the connection with the Mycarematters profile is there, meaning these documents seamlessly link up.

Could I have sat down with my dad and gone through the Handbook without either of us feeling awkward? Yes, I think we could have, and I will probably show the finished product to my mum when it’s available. As for me, having made a Will a few years ago – prompted by my mum updating hers – I guess I’ve begun to think about the future. Our next future care ‘project’ together, for want of a better way of putting it, is for my mum to complete a Power of Attorney. It’s been on our radar for ages, and reading the My Future Care Handbook was another reminder that it will have to be addressed, however hard it is.

To order one or more copies of the My Future Handbook click here.

About the author:

Beth Britton is an award-winning content creator, consultant, trainer, mentor, campaigner and speaker who is an expert in ageing, health and social care https://www.bethbritton.com.

Photo credit: National Care Forum Managers Conference 2019

Return to mycarematters.org

Should we be planning for what happens after death, or before?

We carried out a survey recently, amongst people living with a life-limiting disease such as dementia (and carers, on their behalf) on their attitudes, knowledge and any actions they have taken regarding their future care. We were particularly interested to find out about the barriers that many of us experience in moving beyond “thinking about it” to actually specifying and recording how we want things to be done for us when we are no longer able to do them for ourselves.

It is a relief to see that most people living with dementia have at least written a Will. Unsurprisingly, 84% in this cohort is well above the 46% (1) of adults across the UK who have done so, and an indication that people do recognise the importance of putting their affairs in order when they have been diagnosed with a terminal illness.

More worryingly, only 16% reported having a full set of advance care planning documents in place. In other words, we place more importance on leaving our instructions about what is to happen after we die, than planning for the days, weeks, months and even years when we might live in a state where we have lost the ability to communicate our wishes.

The survey also revealed that whilst 70% of people who are living with dementia have a financial lasting power of attorney in place, only 64% have arranged a healthcare lasting power of attorney. This seems to suggest that people find it easier to make provisions around their money than their future care and quality of life.

Why should this be? The fact that 40% of respondents who care for a person with dementia are not familiar with the term “Advance Care Planning” provides a clue. Many people may be unaware of the options available to retain some level of control over their future care.

One of the most startling findings in our survey is that the majority of respondents say that they will either “get around to planning their care at some point”, and/or they will “let their family make the decisions when the time comes”.  We’re obviously all either optimists or fatalists, or even fantasists?

It’s strange how we don’t really believe in our own mortality. Of course we ‘know’ that death is a 100% certainty for us all, it’s only a question of how and when. But we can’t quite bring ourselves to recognise that what we see our grandparents, parents and other relatives go through is actually going to happen to us. Why else would the 79-year-old lady I was chatting to recently be so relaxed about not yet having a lasting power of attorney in place? “After all”, she said, “I’m perfectly fit and well at the moment.” And long may she continue to be so. I felt it was not my place to point out to a complete stranger that the risk is obviously increasing with each year of an event taking place that will make her – or more likely her family – regret not having a lasting power of attorney and other documents in place.

Michael Hebb, author of ‘Let’s Talk About Death Over Dinner’, describes western society as ‘death-illiterate’. And in not discussing death, he says, we are not empowered to make decisions. (2)

How then to become ‘death-literate’ and empower ourselves to make those decisions that can considerably improve our experience of later life and eventually our end of life? Perhaps one solution is to have those conversations much earlier. NHS guidance calls for advance care planning to be done in the last year of a person’s life. This may already be far too late to do anything other than crisis management, particularly where a person has lost the capacity to make decisions for themselves. More to the point, it can also be a very awkward topic to raise when you may be focused on doing everything possible to stay alive.

Raising the subject when we’re feeling hale and hearty on the other hand, makes it much more likely that we’ll have a more relaxed and open conversation, because it feels so much more hypothetical. But even then there is uncertainty, our survey confirmed, around the decisions to be made and the various documents to be prepared. Whilst the conversation itself may hold a certain merit, its real value will only be realised when decisions are recorded and then stored in such a way as to be accessible when required by those providing care and support.

We’re taking the learning from our survey and other research to produce the My Future Care Handbook, an interactive document designed to help people make informed decisions around their future care, and then record, store and share those decisions as appropriate. Creating a Mycarematters profile will become one part of that process. We are grateful to everyone who completed the survey for helping us create something that is helpful, valid and relevant.

We look forward to consulting further with people living with dementia, their care partners and health and care professionals when we have the first draft of the document available. If you would like to share a comment or idea about the survey, or you’d like to be involved with the project, please get in touch: info@mycarematters.org. In the meantime, there is something you can do straightaway to start taking control of your future care: create a Mycarematters profile. You never know when you might need a stay in hospital and be unable to communicate your needs. It’s quick and easy to do, and it’s free! Go to https://www.mycarematters.org/register.

Posted by Zoe Harris

(1) https://levisolicitors.co.uk/news/new-statistics-about-wills-in-the-uk/
(2) https://www.theguardian.com/lifeandstyle/2018/oct/30/remember-you-will-die-tips-for-better-death-michael-hebb

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.

Mycarematters is shortlisted for Innovating for Ageing competition

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.

Who is Mycarematters for?

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.

For further information on how to use Mycarematters in your hospital, care home or hospice, please also see http://www.mycarematters.org or email info@mycarematters.org.