Overcoming reluctance to talk about the future

Every month we run an online Buddy Support session where we discuss a specific topic, sometimes with specialist speakers, to further strengthen our knowledge and to share our learning and experience. We tend to record any speakers for those who can’t attend to watch later, but not the discussion so people can feel relaxed about participating fully in a safe space. These sessions are open to anyone who has completed our My Future Care Buddy training.*

In May our topic was how to encourage people to do some later life planning when they are reluctant to do so. Nancy has had a lot of experience of this as our most experienced Buddy and she shared some of her experiences and how she saw people, initially reluctant and unconvinced of the value or relevance to them, go on to fully embrace the project. I spoke about some of what I’d learned during the five years I have been researching this topic and we had a rich and constructive conversation amongst our attendees.

These are some of the points that came out of the discussion…

  • Don’t think about the conversation you want to have as being about dying well, but living well. It immediately becomes a whole lot easier if the focus is on things that allow a person to live their best life possible.
  • Start small. Think grab handles not funeral plan. If someone has made it clear they don’t want to talk about or make plans for their future, it is not unreasonable to ask if they have left a spare house key with someone in case something unexpected happens. Find something that is easily achieved, is relevant to them and might offer a stepping stone to other topics.
  • Pick the right time and place, though this might require a bit of creative manoeuvring if the right time and place prove so elusive the conversation looks unlikely ever to happen!
  • Be curious – read between the lines, try to understand what it is that is not being said. Use silence, really listen. Reluctance to plan may be a fear of the unknown, a lack of understanding of the options and decisions available.
  • Use personal experience or stories of other people’s experiences to explain why this matters to you, why you feel so strongly about the importance of making plans. Ensure that any experience or story you share is relevant and will resonate with them.
  • Talking about a stay in hospital rather than end of life might reveal a person’s preferences for their last days or hours without broaching the subject of death directly, if they find that challenging.
  • Secure their trust, find ways to demonstrate you are raising this because they will benefit from what you have to say.
  • Life story work may be a practical and gentle way to open the subject.
  • Consider whether there is someone else they might prefer to talk to, to overcome any cultural or language barriers.
  • Finally, there must always be a judgement call as to how hard you push someone to have the conversation if you have tried everything above and they are still reluctant. It is of course entirely optional as to whether a person makes plans for their later life and for some it may be so distressing that it is not in their best interests to continue pushing the subject. Having said that, we have not yet had anyone we have supported say they felt worse as a result of getting some plans in place, and most are pleasantly surprised by the sense of achievement and peace of mind gained.

*If you support people who might benefit from making plans for their later and end of life and you’d like to help them with that but feel you don’t have the skills or expertise to do so, we offer training, ongoing support and, within certain criteria, free Handbooks, providing you with a source of information and structure for the conversation. Email us for further information.

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.

Life Celebration Books – a gift for your family

We’ve always said that making plans for your future is a gift for your family. Here’s a way to do that whilst creating a fantastic book for future generations to see.

Life Celebration Books are a wonderfully creative way of approaching later life planning. They’re designed to record your best bits- the stories you’d want to share in your eulogy. Lists of your top music tracks, and readings that hold a special meaning. Pictures of favourite flowers. Photos and video clips of how you’d like to be remembered.

The creative process of making your book offers immediate well-being benefits. Then, once your book is complete, there’s a great satisfaction in knowing that loved ones will have everything they need to make funeral planning easy. They’re also a fantastic gift for future generations- a chance to preserve family history and lovely way of sharing words of wisdom- your views and values.

These Life Celebration toolkit makes creating these books easy and enjoyable. You’ll be matched with a Life Story writer who will meet with you online, guiding you through the process. They will then handle all the design and printing, arranging for your finished Life Celebration Book to be delivered to your door.

For more information call Rachel on 07583 297432 or see their website, www.presentingyourpast.com

Results are in…

It was back in September ’21 when I wrote here about why we set up the My Future Care Buddy Service. By then we were in the midst of a pilot and were busy collecting data from the 35 people who eventually completed the programme.

Supporting people to create an action plan around later life planning and then helping them to see it through is not a quick process but it IS extremely rewarding. It was exciting to see some of those lightbulb moments when, for example, people realised that thinking about the future is not just about  them but can also remove a major cause of stress for their family. We heard how the My Future Care Handbook helps take the heat out of a conversation about the future because it makes it feel like the obvious thing to do. And as the statistics started to come together we saw not only that people we were supporting felt better informed and had created some key documents, but their sense of wellbeing had improved as well.

The key findings are below. If you’d like to see the full report please email us.

  • The percentage of people…
    • feeling well or quite well informed about the decisions available to them regarding later and end of life care increased from 50% to 88%.
    • who felt well or reasonably well prepared for later life and end of life care increased from 30% to 100%.
    • who rated their quality of life as good or very good increased from 64% to 75%.
    • who rated their quality of life as fair or poor reduced from 36% to 25%.
    • who had had a full discussion with the person / people closest to them increased from 18% to 86%.
    • who felt it was very important to document decisions about later and end of life increased from 65% to 88%.
  • People’s mental wellbeing score improved from 48 to 77 (max 105).
  • Across 8 documents, the average percentage of documents that people had in place increased from 34% to 67%.
  • 100% of participants said they found the service to be very useful.
  • 100% of participants said they found four sessions to be about right (not all used all four sessions but were grateful it was there if needed.)

On the strength of those results we have now secured funding to deliver the service free to individuals and organisations in the south east and in slightly more restricted circumstances in other parts of the UK.

Whether you are an individual seeking support to make some plans for later life, or an organisation wishing to secure Handbooks and support for your members / patients / clients click here or email us further information.

For the dates of the next online group sessions, click here.

Calling on potential Buddies!

Updated 17th August 2022

Would you like to support people wanting to make plans for their later and end of life? Are you a good listener with a positive outlook on life and believe that it is never too soon to have a conversation about the future?

We are looking for volunteers, with a couple of hours a week available, to train as My Future Care Buddies. We are particularly keen to hear from people who identify as part of a community, whether faith, sexual orientation, gender or any other, who would like to support others within the same community.

The role of a Buddy is to offer support and encouragement as people think about and work on their plans for later and end of life. You don’t need to have your own later life plans in perfect order. You may even find that it helps you to do the same! You will not be expected to give advice and you will use the My Future Care Handbook as a structure for your conversations.

You will be paired up with a maximum of six people at any one time and will spend up to 3 x 1 hour with each person on Zoom, with calls spaced approximately three weeks apart. You will arrange mutually convenient times with the people you are supporting for each call.

No qualifications required, though experience of working with people in some capacity would be an advantage. Full training and ongoing support is provided.

Our next training sessions are coming up soon so if you’d like to hear more please email info@mycarematters.org without delay and let’s have a chat.

Next Buddy Training sessions: Tuesday 20th and Wednesday 28th September 2022, at 10 am for 1.5 hrs each day.

 

Learning Objectives – on completion of the course attendees will

  • Understand the relevance and value of advance care planning
  • Have a working knowledge of advance care planning tools and documentation
  • Have a working knowledge of coaching techniques
  • Be familiar with the contents of the My Future Care Handbook
  • Be able to support an individual to identify and meet their goals around later life and future care planning, using the My Future Care Handbook as a framework

Still procrastinating?

We were ready to start trials of the My Future Care Handbook – we had programmes lined up with a hospice, a hospital and with groups supporting people being cared for at home. It was March 2020 and I’m sure you don’t need a reminder of what happened next. All activity beyond core activities were cancelled at every health and social care organisation and we had to change tack.

We’d had a lot of input from all manner of people at each draft of the Handbook but we now needed to put it through its paces. Over 100 people generously agreed to complete the Handbook and report back on the experience. Some completed questionnaires, some emailed back their thoughts… and a lot went silent.

I started emailing people. Many admitted they’d been meaning to get on to it but hadn’t found the time. Remember, these were all people who had declared a need to make plans for their future, who wanted the peace of mind they knew they’d achieve once their decisions had been written down and shared.

I suggested we find a time for me to get their feedback by Zoom or on the phone. For many, that was the nudge they needed to open up the Handbook and make a start. Some hadn’t managed to get very far when we spoke, we chatted and agreed to speak again a few weeks later. They admitted they needed that date in the diary to galvanise them in to action. It is well understood that asking someone to check up on you is an effective way to beat procrastination. We don’t want to ‘fail’, or as Sally Knocker said, ‘we all like to please teacher’.

The initial outcome from this exercise was incorporating the various improvements that people suggested for the Handbook. The current version is very much stronger as a result – I’d like to say a big thank you to all those who contributed.

Another outcome was that at least 60 people are better informed, had conversations and made decisions about their later life and future care, according to their priorities. Some wrote a bucket list and what they’d like to have happen at their funeral. For others it was the more legal documents like powers of attorney and advance directives. Whether they worked their way through the entire Handbook or just tackled one task, we’d helped them move forward in some way.

The Handbook has been very popular and for some its arrival in the post will have been all they need to get on and complete some or all of the various tasks. But as we started to spread the word I couldn’t help thinking that a significant portion of Handbooks would arrive and be put to one side to be dealt with ‘soon’ or ‘when I have a moment’. (I do understand, by the way, that for some people finding the time, perhaps if you are a full time carer, is a real issue and not always a hollow excuse to keep putting something off.)

Having seen the power of those initial phone calls to nudge people into action, it seemed obvious to find a way to to offer that to more people. We did some fundraising and created what was perhaps the most important outcome of working with that large research group: My Future Care Buddy Service.

We are now able invite people to sign up to a one-to-one or small group sessions with a trained Buddy who will support you to identify and meet your priorities in later life and future care planning. Using the My Future Care Handbook as a structure for the conversation, we offer up to 4 sessions of up to an hour each and by the end of each session the Buddy and the person will have agreed an action plan to be completed before the next session.

Whether one-to-one or in a small group you will develop an an action plan with your Buddy and get another date in the diary so they can follow up with you and see how well you are progressing.

As one happy participant said: “Thank you Nancy for your understanding and guidance. After our session today, I got cracking and did a lot more… You are doing a brilliant job and I much appreciate it.” 

We have just announced the dates of the next three group sessions on Zoom and you can reserve a place, or request a one-to-one session, by emailing info@mycarematters.org.

  • 8th October 1 pm
  • 11th October 1 pm
  • 15th October 1 pm