It’s Dying Matters Awareness Week so it seems like a good time to take stock… and not for the first time in my life am I looking back and saying, I didn’t expect to do that! I suspect a lot of people can say the same, having started out with one idea and ending up with something entirely different.
This time it is the My Future Care Handbook and Buddy Service. In 2018 we received a small grant to develop what we thought would be an advance care planning (ACP) toolkit for non-specialist healthcare professionals. Not specifically to add to the paperwork and forms already out there – there are plenty of those – but to encourage people to initiate the conversation by strengthening their skills and knowledge. One of the barriers to people creating advance care plans, we had discovered, was a general uncertainty amongst non-specialist staff as to what ACP entailed.
But two years, numerous workshops, surveys and interviews later it seemed much more important to put the information in the hands of the individual, give them an understanding of the options available to them and encourage them to take the lead.
We’re the experts on our own lives, after all, so why expect a professional to take the lead on something we know best, when all we need is an understanding of the options and decisions available to us?
So we produced a resource that talks as much about living as it does about dying, eliminating the ageist aspect of later life planning (every adult should at least understand what their options are and preferably have things like a will and power of attorney in place – none of us knows what’s round the corner) and making it relevant for people who think a conversation about death and dying has no relevance for them.
The My Future Care Handbook has received some wonderful endorsements, like this one from Wendy Mitchell…
“I found the Handbook very easy to follow, in a logical order and it covered everything… People in the earlier stages of planning should find this to be exceptionally informative and a prompt for useful guidance and discussion.” Wendy Mitchell, best selling author of 3 books on living with dementia.
… but as easy to use and straightforward as it is, even the Handbook isn’t enough to shift some people from thinking about it to doing something about it. Lots of us need encouragement and support to think through our options, to have an initial conversation – not necessarily with a family member, and then a nudge to get on and put plans in place.
So we developed the My Future Care Buddy Service, partnering people with trained volunteers to create an action plan and see it through. This being 2020/21 with covid virtually eliminating any scope for face-to-face support, our only real option was to speak with people by phone or video call. Thanks to further grant funding we were able to provide this as a free service, offering people up to 4 sessions of up to an hour each, to think through their options, develop an action plan and see it through.
The huge amount of positive feedback we’ve received makes me think we’re on the right track…
“It was very good to have these discussions, to air out thoughts and discuss the positive planning that can be done.”
“I don’t have any family or anyone else to talk to about this so it was really nice to chat it through with you, thank you so much, you have taken a weight off my mind.”
“It brought up a lot of things I wasn’t aware we needed to do. I thought we had already taken care of everything. After working through this with you, I think we can say, we’ve got most of things done now!”
“It’s given us peace of mind. Thank you for making this easier than we expected. It was nice that we were able to laugh and share stories with you and not make it all so serious.”
… but we were only ever going to be able to support a relatively small number of people with our own volunteers, so the next obvious evolution of the My Future Care service was to train staff and volunteers of other organisations, whose members / patients / clients might wish to make plans for later and end of life.
Again, grants have enabled us, within certain criteria and geographical areas, to provide the training free, plus free Handbooks for the trainees and the people they go on to support. And we have partnered larger projects like the Thinking Differently About Dementia project in Sandwell and provided face-to-face training for their Dementia Navigators and Advisers to use the Handbook as part of the support they are providing to their community.
We are not prescriptive as to how support is given, merely that people are not given Handbooks and told to go away and get on with it. Experience has shown most of us need more support than that to get things done. But whether organisations offer one-to-one support like Selsey Community Forum, run groups like Broadstairs Town Shed or a hybrid of the two, we are facilitating an exponential increase in conversations and decision-making around later life, death and dying by enabling non-specialist staff and volunteers to initiate the conversation, using the Handbook as a source of information and structure for the conversation.
Attendees have found the My Future Care Buddy Training useful, enjoyable and thought provoking…
“Loved being able to share and learn from others from different backgrounds/groups.”
“The number of attendees was just right to create that safe and cohesive space where we felt able to share and discuss ideas and concerns. Nancy is a consummate facilitator by creating flow and progression whilst allowing for input and exploring of ideas. I thoroughly enjoyed the training and learnt a lot through the process.”
“A very thought provoking and useful course expertly led by the facilitator.”
…and we have also received some valuable constructive suggestions for improvement which has enabled us to continue to refine the sessions.
And so to the final element of the service… so far! We realised that no amount of training could cover every eventuality or scenario that might arise between Buddies and beneficiaries, and also that acting as a Buddy can be challenging, sometimes even overwhelming. So everyone who completes the training is invited to join our ongoing Buddy Support Programme, with one-to-one access to a highly experienced Buddy, monthly talks by expert speakers with the opportunity to discuss and share knowledge and experiences and to become part of a community of people linked by their passion to improve people’s experience of later and end of life.
So there you have it… the My Future Care story so far. We’re now actively seeking new partners, whether support groups: for carers, people living with dementia or cancer and others, coffin clubs or death cafes, hospices, memory assessment services, social prescribers… you get the picture. In many cases we can provide free training and ongoing support and free Handbooks.
By the way, Buddy Connect is the newsletter sent to everyone who has completed the Buddy training each month; interested organisations and individuals are also welcome to subscribe.
And the Buddy Companion newsletter is sent to everyone who has expressed interest in making plans for later life or has already made a start: read past issues and subscribe here.
My Future Care is a project run by Mycarematters 2020 CIC, a not-for-profit community interest company.