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

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