Introduction

In May this year I was part of a rather ambitions, highly passionate and incredible team of people bringing together the UK’s first Advance Care Planning Day, an Advance Care Planning Conference and a UK Book Tour with authors of the bestselling book Hope for the Best Plan for the Rest.

You can read about the Conference, ACP Day and UK Book Tour events and how the ideas developed in an earlier blog "It started with a webinar, I never knew it would come so far" It was wonderful to all meet in person after so much planning and I reflect on the week of events as the highlight of my career.

To set the scene, let me introduce you to the people in that incredible team I mentioned:

· Dani Ayre: Matron, Lead Nurse, Specialist Palliative Care Team NNUH

· James Norris: Founder of My Wishes & The Digital Legacy Association

· Dr. Hsien Seow: Professor, McMaster University, Canada. Authors of the bestselling book Hope for the Best Plan for the Rest

· Dr. Sammy Winemaker Associate Clinical Professor McMaster University. authors of the bestselling book Hope for the Best Plan for the Rest

· Clare Fuller: Advance Care Planning Advocate, Educator & Coach

This blog looks back on all of the events with comments from people involved. It begins by providing feedback from the Conference, ACP Day and UK Book Tour before listing resource you can access from all of the events. The blog closes with setting the path 2025 and an invitation to get in touch if you would like to be involved with future Advance Care Planning events.

Feedback from the Advance Care Planning Conference

The conference focused on Getting Your House in Order, the model I have created to explain Advance Care Planning. The conference also celebrated the first UK Advance Care Planning Day and delegates and people all over the UK were invited to make an Advance Care Planning pledge.

Feedback was collated by Dani and was wonderful to read. Many people said it was a stand out event for them and the best conference they had attended. The Conference impacted people on a professional and personal level and started many Important Conversations; you can read just a few of the comments below:

Just some of the fabulous feedback from Getting Your House in Order:Advance Care Planning Conference 2024

The conference included a live Lasting Power of Attorney signing – to my knowledge the first in conference LPA signing. People have shared that this has inspired them to start Advance Care Planning which is so good to learn.

See me witness and sign Dani’s Lasting Power of Attorney live

Feedback from the ACP Day

I asked James: what sort of response there was from the ACP Day?

James: The response was incredible. There are many advance care planning advocates across the UK and many of us shared information to the communities served and made pledges using the social media 'pledge cards' both ahead of time and on the day itself. Charities, NHS ICBs and NHS groups also helped spread the word and supported communities with their advance care planning journey's.

Catching up with James on Conference day

Feedback from the UK Book Tour

Feedback from the UK Book Tour is encapsulated beautifully in the words from Hsien and Sammy when I asked: what was the highlight of the UK Book Tour?

Hsien: Meeting so many incredible people equally passionate about helping people with a serious illness discuss and plan for their future. It was inspiring and invigorating.

Sammy: The road trip!!! Spending the week with two Waiting Room Revolution champions who have inspired us to stay the course. The trip was affirmed that there really is a need for a healthcare revolution and that it isn’t just a Canadian challenge.

Lots of travel, lots of work and lots of smiles and friendship on the UK road trip!

Sammy & Hsien on the last day of the UK Book Tour in conversation with Dr Kathryn Mannix at Waterstones, Gower Street London.

Resource

There is a wealth of resource available following the events. You can access the conference livestream in full and free on demand via https://advancecareplanday.org/acp-conference/

The ACP Day website also contains links to information about Advance Care Planning and the podcasts created to explain elements of Getting Your House In Order (check out the National resources tab).

To access resource about Hope for the Best Plan for the Rest and the 7 Keys on which the book is based go to the Waiting Room Revolution website. Series one of the podcasts explains the 7 keys and the home page includes a downloadable 7 Keys One Pager as well as a book club discussion guide.

7 Keys for navigating a life changing diagnosis - one pager available to download

Advance Care Planning Events for 2025

Looking to next year, plans are already in progress to deliver another conference and ACP Day.

James: Due to the success of the inaugural ACP Day and at the request of participants, we have decided to make the day or awareness and action an annual event. The foundation has been laid and we would love to engage with national and local charities and discuss how we can continue to build and enhance it's reach and societal impact. If you missed ACP Day 2024 you can review the website with this year's content here https://advancecareplanday.org/

If you or your charity would like to discuss working together and make a positive, significance difference within Advance Care Planning in 2025, you can get in touch at https://advancecareplanday.org/contact/

We are also eagerly awaiting the next stages of the Waiting Room Revolution and the professional workbook which is in progress.

Clare: What are the next steps for the Waiting Room Revolution?

Hsien: The revolution is working to connect with and strengthen its community of ambassadors around the world, and build more tools like disease roadmaps and workbooks, to reach more people.

Sammy: Developing a companion workbook for our book, preparing healthcare providers for a new type of ‘activated’ patient and family, creating tools that will increase the health literacy of patients and families.

Closing thoughts

We have some way to go before Advance Care Planning is embedded into practice and seen as a wider societal issue rather than medically driven event. Coming together to share knowledge, resource and start Important Conversations through the events I have described in this blog are small steps to what I hope will be big change.

I am looking forward to seeing the next stages of this exciting movement in Advance Care Planning. I will continue making my own small steps to improve professional education, raise pubic awareness and normalise planning ahead through work at Speak For Me and collaborations with fabulous people.

If the blog has helped you or provided information and you would like to support my ongoing work, head to Buy me a coffee – thank you!