I have been doing my role for a long time; it scares me sometimes to acknowledge that means over 30 years, and most of that time has been focused on Palliative and End of Life Care (PEoLC). Somewhat unusually, I have worked across the spectrum and seen PEoLC through multiple lenses working is hospices, the community, the acute sector and even as a carer for a close family member. I have worked as a Specialist Advisor for the CQC and a Nurse Consultant for GSF. I founded Speak For Me to improve professional understanding, raise public awareness and normalise conversations about Advance Care Planning in 2021.The potted career history is my way of saying I have been in this game a long time and, whichever lens I look through, Advance Care Planning starts too late.

Many people have had a dream about having an Advance Care Planning Day to the UK; this blog is about how a dream has become reality.

Where the story started

Back in 2021 I was in contact with international colleagues and learning about Advance Care Planning Days held in countries like Canada and Australia – why wasn’t there one in the UK? A group of likeminded people began meeting and I feel proud to have been a small part of that group. What we shared was a passion for planning ahead to improve patient, family and staff experience. The group included some phenomenal minds and people I had known of and respected from many years in PEoLC; great inroads and connections were made.

Despite much enthusiasm the stars didn’t align to create an Advance Care Planning Day. Challenges such as terminology, the logistics of planning with a big group and time constraints thwarted us. As always, conversations and networking proved so valuable and seeds were sown.

Around the same time, in April 2021, I attended a on-line event in Canada hosted by Dr Sammy Winemaker and Dr Hsien Seow of the Waiting Room Revolution Team. The event had caught my eye because Sammy and Hsien were in conversation with Dr Kathryn Mannix. I was familiar with work of the incredible Kathryn Mannix but the Waiting Room Revolution, Sammy and Hsien were new to me: hearing them in discussion with Kathryn I was hooked. Sammy and Hsien have created a concept of seven keys to support people navigate the healthcare system, upstream Advance Care Planning and empower people to ask the questions that matter. The seven keys are explored in season 1 of their podcast which I cannot recommend highly enough – it was like hearing everything I believed in crystallized into seven clear steps.

What happened next

I wanted to learn more about the Waiting Room Revolution and was delighted to interview Sammy & Hsien in April 2022 – you access the podcast here . Creating a full circle, I was delighted to be interviewed in November 2023 by Hsien and Sammy for episode 81 of their Waiting Room Revolution podcast.

Running parallel to these events I continued to create podcasts, blogs and deliver teachings to raise awareness and understanding about Advance Care Planning. I would love to see a single national repository of information for Advance Care Planning for us all, professionals and the public, but realise this isn’t an option in England at present. My mission evolved to create a model for Advance Care Planning that was easily understood, applicable for all and relevant to any stage of life – Getting Your House in Order was the result. Call it planning ahead, call it whatever works for you in your area – the concepts are easily understood and transferable.

In discussion with Hsien I explained the concept of Advance Care Planning as Getting Your House in Order and how the infographic I have developed supports and normalises planning ahead.

From a house to an Advance Care Planning Day

An early adopter of the Getting Your House In Order approach to Advance Care Planning was Specialist Palliative Care Nurse Dani Ayre from Norfolk and Norwich University Hospitals NHS Foundation. Dani had been following the podcast and attending monthly webinars I host. Dani contacted me to say the model was supporting her work and asked if I would consider speaking at the 2024 Norfolk & Norwich Palliative Care Conference.

Talking with Dani we realised quickly how passionate we both are about all things Advance Care Planning. Dani revealed she wanted to create the conference themed around how I was presenting Advance Care Planning and, in our discussions, I wondered out loud if Hsien and Sammy would consider presenting virtually at the conference. Not content with that, we knew Sammy & Hsien’s book was about to be launched – might they just possibly consider a UK Tour to share the book? Not content with that, could this be a time to explore an Advance Care Planning Day? I’ll let you picture the animated discussions as we explored options and created dreams.

I contacted Sammy and Hsien and was thrilled when they agreed to present virtually at the conference and consider the UK Tour. After a meeting or two to explore the idea turned into a plan – the online presentation became an in-person presentation and the road trip was on.

Time now to bring in the role of James Norris, founder of the Digital Legacy Association and MyWishes. I had the pleasure of meeting James at the Palliative Care Congress in Edinburgh in March 2023 and had respected his work for many years. James was a natural choice to approach for a presentation on legacy at the conference. James had previously started to build an Advance Care Plan Day website a few years ago and had also wanted to partner with others to help make this happen. For reasons similar to my own his work on launching an Advance Care Planning Day was paused. With the conference due to take place in May and after James shared a link to the website it felt right to align and for the UK to have its first Advance Care Planning day this this year.

We decided that this year’s Advance Care Plan Day theme would follow the conference’s ‘Getting Your House in Order’ theme and it would be one of the focal points for this year’s Advance Care Plan Day.

The message behind the Advance Care Plan Day is simple, to highlight the importance of Advance Care Planning and encourage everyone to discuss, share and document wishes. We accept fully that in different places planning ahead is called different names, that doesn’t matter because the underlying elements are the same. I hope that in some way acknowledging the different names across places and nations can be a strength. Understanding elements of Advance Care Planning allows a pick and mix approach – choose what works for you for area and stage in life.

Three Musketeers

So that’s how it all began and where are we now? I have called this section the Three Musketeers but, in reality, it is a team of Musketeers; I am not going attempt to name people as I know I will do a poor job in individually recalling the many that have come on board for this journey. Without support of a wide and diverse group of people we wouldn’t be where we are. Thank you.

Below is a summary of all the Advance Care Planning events with details of how you can be involved.

How you can be involved

Advance Care Planning Day

The Advance Care Planning Day will take place on the 8th May 2024. This day of action and awareness will highlight the importance of Advance Care Planning and encourage people to discuss, share and document their wishes. Leading up to the day and on the day itself you can:

· Make Advance Care Planning pledges and share them with your loved ones and the wider community on social media

· Raising awareness and sharing Advance Care Planning information

· Share your care planning ahead stories

· Listen to six Getting your House in Order podcasts, each highlighting a different element of Advance care Planning

This year’s Advance Care Plan Day is taking place during Dying Matters Awareness Week 2024. You could make a tree of pledges as a way to be involved and create an event or activity for Dying Matters. I know teams often do bucket lists in their organisations – how about creating a tree of pledges this year? On a smaller scale, you could simply make a pledge to talk about Organ Donation with someone close to you. Whatever you do, make sure you share your story.

Conference

If you are reading this before 8th May 2024 it’s not too late to book your place at the Conference – it is free to attend in person or live stream for organisations and you can click here to book your place. The conference is funded very kindly by the N&N Hospitals Charity.

UK Book Tour

The UK Book Tour with Sammy and Hsien so, from 7th May will also be taking place. I will be on the road with Danni, Sammy and Hsien travelling to Norwich, Ipswich, Canterbury and closing in London when Hsien and Sammy will be in discuss ion with Dr Kathryn Mannix. It really is a feat of organisation and I am excited to be meeting people in person that I feel I know already.

The UK book Tour with Drs Sammy Winemaker and Hsien Seow , authors of the bestselling book 'Hope for the Best Plan for the Rest' follows their ground breaking podcast .

You will be able to meet Sammy & Hsien will be at the following events

7th May at Priscilla Bacon Lodge Hospice (Norwich) Registration link: https://bit.ly/3Q4O8g5

- 9th May at St. Elizabeth Hospice (Ipswich) Registration link: https://bit.ly/3TUsT1C

- 10th May at Waterstones (Canterbury) Registration link: https://bit.ly/3W1TgFm

- 11th May Waterstones Gower St. (London) Registration link: https://bit.ly/3Q47m5i

Closing reflections

Who could have imagined we would come so far? It’s ambitious and bold to plan so much in one week, but it feels absolutely the right thing to do.

If you are reading this before May 8th it’s not too late to be involved – you can help make this dream a success. If you are reading after May 8th 2024 you can still access the Advance Care Planning website and resources.

Thank you to so many people that have either supported the journey so far or provided encouragement and helped to raise awareness.

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!