How My Future Care Buddy Training helps Sage House’s Wayfinders support people affected by dementia

Our My Future Care Buddy Service offers training and ongoing support to organisations wishing to help the people they support make plans for later and end of life.

We have trained staff or volunteers at organisations throughout the UK to be My Future Care Buddies and the My Future Care Handbook as a source of information and structure for their conversations. Thanks to grant funding we’ve been able to supply training and ongoing support free to many of them, including free Handbooks for the people they go on to help.

One of the first organisations to sign up was Sage House a specialist dementia hub in Tangmere, West Sussex. We caught up with Natasha Davies and Judith Sotes recently to find out how they’re using the My Future Care Handbook to provide tailored support to their customers

Q: What kind of support does Sage House provide?

A: We provide the latest support, information, advice and activities to people living with dementia and their families. We bring local services together under one roof to offer our customers individually tailored support throughout their dementia journey.

Our Wayfinding service allows everyone entering Sage House to talk to a professional for essential one-to-one support and advice. Our Wayfinders are familiar and friendly faces who support people living with dementia, their families, friends and carers. They can work with people from pre-diagnosis (when they notice dementia symptoms) and remain a named contact through all the dementia stages.

Q: How is the My Future Care Buddy Service helping you to meet people’s needs?

A: Our Wayfinding team is delivering a two-session Buddy workshop for 12 individuals. We are working with five couples and two single participants and the first session took place in April. We covered an introduction to the My Future Care Handbook, setting your priorities, and writing a bucket list. We also invited solicitors to discuss Lasting Powers of Attorney (LPAs) and other legal matters. Following the first session, we assigned the group the task of working on their priority lists.

To provide motivation and ongoing support, the Wayfinder who hosted the workshop is following up via phone call with each participant six weeks after the initial session. The second session will take place a further six weeks later, in July. At this session, we will review what has been achieved so far and focus on the remaining sections in the Handbook, including ReSPECT forms, funeral planning, and letters of wishes.

By hosting group sessions, we can accommodate more people within the allocated time, while also allowing participants to benefit from peer support as well as Wayfinding assistance. Using the My Future Care Handbook, the support is more task-oriented and focused on productive outcomes.

After the final session, we will collect feedback and share the outcomes achieved. One of the attendees has already told us that she has actively started working on the Handbook with our support. She said she had actually purchased it a year ago but had been unable to start without our assistance.

Q: Would you recommend training as a My Future Care Buddy?

A: The Buddy training provided a useful understanding and introduction to the Handbook and enabled us to develop a framework for our workshops.

The Padlet resource (the My Future Care online resource hub) now also provides ongoing support with talks coming up on specific aspects of the Handbook. It will be useful to be able to access these as and when required.

.Thank you Natasha and Judith for sharing your story!

We are excited to support you as you continue to develop your workshop offer and find creative ways to tailor your My Future Care support to people’s individual circumstances and needs.

Would you like to upskill your team to help others meet their future care and later life goals? Discover how the My Future Care Buddy Service can help you support people to plan for tomorrow and live for today!

My Future Care is a project run by Mycarematters 2020 CIC, a not-for-profit community interest company.

The My Future Care Story… so far

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.

Contact us by email if you’d like to know more, or if you’d just like to buy a copy of the Handbook they can be purchased here. Bulk prices are available.

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.