Dying Matters Awareness Week 2017 –  What can you do?

We are now half way through Dying Matters Awareness Week. This is our favourite week of the year and something that we whole heartedly support.

In 2017 Dying Matters is asking everybody a simple question –  “What Can You Do?” Talking and planning ahead for dying, death and bereavement is really important. But people also need practical help and support and there are plenty of things we can do to help each other.  Further information can by found at www.DyingMatters.org

The Digital Legacy Association will be campaigning and flying the flag for digital asset and digital legacy planning this week in a number of ways.


  • Monday 8th May: We launched our new, digital assets and digital leaflet. This is free for hospices, hospitals and carers to download and print from: https://digitallegacyassociation.org/framework/free-inpatient-resource-for-hospices/ If you need any support with this or would like some to be printed and sent to you get in touch.
  • Wednesday 10th May: Our digital assets and digital legacy factsheet will be released by Dying Matters during a ‘digital legacy twitter chat’ between 1pm and 2pm. Feel free to contribute to the conversation by using the hashtag #WhatCanYouDo on Twitter.
  • Thursday 11th May: We will be speaking and running at workshop at Byw Nawr’s Conference at the Swalec Stadium, Cardiff. We will also have a stand at the conference. Feel free to say “hello” and take some public awareness leaflets away with you.

15th World Congress of the European Association for Palliative Care – Posters & Workshop


This year we will be co-charing a workshop and presenting two posters at the 15th World Congress of the European Association for Palliative Care in Madrid.



18th May: 08:00 – 08:45. Open Meeting Making the Most of Twitter at #EAPC2017 – An Interactive Workshop Everyone welcome. Please bring your smart phone or tablet.


  • James Norris (London, United Kingdom)
  • Catherine Walshe (Lancaster, United Kingdom)
  • Katherine E. Sleeman (London, United Kingdom)
  • Avril Jackson (London, United Kingdom)
  • Julie Ling (Dublin, Ireland)

The full EAPC 2017 scientific programme can be found here



The Digital Legacy Association (London, UK), Velindre NHS Trust (Cardiff, UK) and Mayo Clinic (Rochester, USA) have had two posters accepted for EAPC 2017. Further information can be found below:


Poster 1: Who Do You Think You Are? Anticipatory Digital Legacy Planning and how it can work


  • Authors: James Norris, Jake Strand, Mark Taubert
  • Institutions: Digital Legacy Association (London, UK); DeadSocial (London, UK); Mayo Clinic (Rochester, USA); Velindre NHS Trust (Cardiff, UK);


Text:  Over the last decades, the adoption of the Internet and subsequent communication tools like smartphones and social networks has transformed our lives. There is real value and significant substance attributed to each individual’s digital assets and the information that they leave in a digital format when they die. This can be of significant value to palliative care professionals, and existing data suggest that legacy interventions are beneficial when approaching the end of life. Upon death much of this information will form part of the deceased person’s overall estate;in essence, it becomes their very own digital legacy and can be important in the grieving process. The information left behind (the digital remains) is stored on social media accounts, websites, blogs, PayPal accounts, an iTunes library and devices like mobile phones, hard drives, tablets and computers. The importance and value of this information is significant and can form part of a cultural heritage, and may be accessible via  a few clicks for future generations

Most people, if they do any planning at all for what happens in the time after they die, focus on their physical possessions, and not what is stored digitally.

Should providing advice about such matters fall into the remit of the social, supportive and palliative care world? If so, how can this care be provided and to what extent? If not, who will carry out this task and then signpost patients to suitable areas of support? Palliative medicine teams are tasked to support the psychosocial, spiritual as well as the physical aspects of a patient’s care. Care is also necessarily targeted at supporting families.  Providing legacy planning, including digital legacy work can be considered part of the realm of palliative care team engagement.

DeadSocial was created four years ago to provide tools, tutorials and support for anyone who wishes to engage with this form of planning and legacy creation. Its purpose is to empower people to better understand what happens to their ‘digital footprint’ upon death. In doing so each visitor is able to make plans, and will be encouraged to address each area of their life that may become ‘locked’ or password-restricted to others, once they are gone.

The Digital Legacy Association’s mission is to raise standards within end of life and palliative care in areas of digital asset and digital legacy management and planning.  Much of their work revolves around training and defining best practice.


 Poster 2: Hashtag #DayOfTheDead-  Attitudes towards death ,on the internet and social media microblogs


  • Authors: James Norris, Jake Strand, Mark Taubert
  • Institutions: Digital Legacy Association, DeadSocial,


Text: The internet has been the biggest catalyst for change since the industrial revolution. It has changed the ways in which we communicate and now is changing how we prepare for death and remember our loved ones. Death and dying are still seen as taboo subjects in many societies, but social media microblogs appear to be bucking this trend. This poster will display realtime datasets obtained from the Digital Death Survey 2017 during the EAPC congress.

More information about the15th World Congress of the European Association for Palliative Care can be found here.

New Digital Death Data: ‘Breaking Bad News’ in a Social Media World

Social media could soon be sounding the death knell for the sympathy card according to one in ten UK adults.

  • 1 in 8 adults have posted online to notify others about the death of a loved one
  • 1 in 5 adults want loved ones to post online notify others about their own death
  • 1 in 3 agree that with the rise of social media less people send sympathy cards

Key findings

The report, which is the second in a series of studies looking at death in the digital era, highlights that the nation is increasingly turning to social media to break the news that a loved one has passed. Over a tenth (13%) of UK adults have personally posted online to update others about the death of a loved one, whilst a quarter (25%) say they wouldn’t have known someone had died if it hadn’t been shared on social.

Highlighting that this is an increasing trend for the future, a fifth of us would want a loved one to post online when we pass away and a quarter (23%) of 18-24 year-olds have already updated online friends about a death.

When looking at who people will post online about, findings show that we are most likely to post about a family member (19%). However sharing news about the loss of a friend (15%) or partner (13%) also led us online. Furthermore, celebrity deaths triggered a post from over a tenth (12%) of UK adults.

When delving into the reasons UK adults posted online to notify others about the death of a loved one:

  • Half (47%) of adults took the online approach as it was the quickest way to let people know
  • Two fifths (45%) did so to express how they felt about the person
  • A quarter (25%) said an online update was the only way they could let some people know
  • A fifth (18%) did so to stop online friends from contacting the deceased online
  • A fifth (18%) worried they’d see people and have to let them know in person
  • A fifth (17%) wanted to see nice comments in response to their post
  • Over a tenth (16%) said their loved one lived their life online, so it made sense to
  • A tenth (9%) said they posted just because everyone else does


Regarding the online sites UK adults have used to post online about the death of a loved one, Facebook is most popular with four fifths (84%) of adults saying this was where they posted. A further fifth (18%) took to twitter and over a tenth (13%) created a dedicated online memorial site. Perhaps reflecting the nation’s love of social media, the following channels were also used:


  • 11% of UK adults would post on Instagram
  • 8% would write a specific blog post
  • 5% would provide an update on LinkedIn
  • 5% would Snapchat

David Collingwood, Head of Operations for Co-op Funeralcare commented:

“With people increasingly using social media to update on everyday life, it’s no surprise that online sites are more frequently being used as forums to update on the news of someone passing away.

“Our study reveals that 33% of those adults who want their loved ones to post online when they pass away have already let someone know that this is their wish or communicated it in their funeral plan. I think that’s really important – we all deal with grief in different ways and my advice would be to consider if an online post is what your late loved one would have wanted and whether there is a risk of upsetting friends and family members by doing so.”

Jennie Bond, Journalist, Broadcaster and Royal Correspondent commented:

“During my career as a journalist, broadcaster and Royal Correspondent, it was my responsibility to report on births, deaths, marriages and everything in between. “In my role, striking the right balance of sensitivity could be challenging. This is why I find it fascinating that due to the increasing use of social media, our views on posting about people passing away are beginning to change. There aren’t the same sensitivities surrounding breaking bad news on our social pages it seems. This is reflected in Co-op’s study by the fact that 1 in 10 people see posting online about someone’s death as ‘normal’.”

Research was conducted in January on behalf of Co-op by ICM among 2000 UK adults

Digital Legacy Association News Bulletin

It has been a busy start to 2017. Below are a few news items that may be of interest.

The TalkCPR video below highlights doctors sharing their experiences of CPR and DNACPR…

  • We have had two papers accepted for the European Association of Palliative Care Conference 2017 in Madrid. The first paper is titled: ‘Who Do You Think You Are? Anticipatory Digital Legacy Planning and how it can work’. The second paper is titled ‘Hashtag #DayOfTheDead- Attitudes towards death ,on the internet and social media microblogs’. The papers authors are James Norris (Digital Legacy Association) Jake Strand (Mayo Clinic) and Mark Taubert Velindre Cancer Centre (NHS Trust). We will also be presenting at the EAPC.
  • The Digital Legacy Conference 2017 will take place later this year. For the last two years it was hosted at UCL Partners and St Joseph’s respectively. It is a free conference and brings together innovators working with the digital assets and digital legacy sphere. This year the format will change (more information TBA).

Upcoming conferences and events 

The Digital Legacy Association will be speaking at the following conferences

  • 5th April – Pavilion Suite, Best Western Willerby Manor Hotel, Hull
  • 2nd May – Dorothy house hospice
  • 10th May – Together for Short Lives, Defining moments Conference (video presentation), Birmingham. Further information
  • 10th May – Byw Nawr & Dying Matters Awareness Week Conference, Swalec stadium, Cardiff
  • May – Digital Legacy Conference 2017 (location TBC)
  • 11-12th July – Association of Bereavement Service Coordinators, Trinity University Leeds.

If you are attending any of the events or conferences above and would like to arrange a meeting feel free to get in touch.

Your invitation to visit the National Assembly for Wales (Senedd) – Leaving a legacy, Making a pledge

Welsh Senedd

Leaving a legacy – Making a pledge


Join Byw Nawr at the Senedd to hear what they and their partners are doing to improve how we approach making plans for the end of life.

Bethan Jones Parry your event host will take us through a packed event and invite you to make a personal pledge, whether that be holding a Byw Nawr Café with friends, making a Will or simply sharing memories with loved ones.


No pledge is too great or small.

Speakers and Stands include:

  • Dr Mark Drakeford AM – event sponsor launching the new Welsh Government short film: ‘Talk, Plan, Live ‘– Encouraging us all to have that Big Conversation on here in Wales.
  • Byw Nawr Chair Dr Hywel Francis and the National Clinical Lead for End of Life Care Baroness Finlay ‘In Conversation – Leaving a Legacy’.
  • Gwyneth Lewis A Hospital Odyssey – Wales first Poet Laureate reciting extracts from her epic poem.
  • Digital Legacy Association founder James Norris on ‘Managing your Digital Legacy’ what goes on after you’ve gone.

Dr Mark Taubert Clinical Director End of Life Care Velindre NHS Trust ‘Talk CPR’ – improving communication between patents and health professionals, NHS Wales Improving Quality Award Winner 2016

Cruse Cymru Bereavement Services ‘Tools and techniques used by Cruse Bereavement Support Volunteers when working with bereaved Children and Young People’. Miss Leah Bizzell Cruse Young Peoples’ Ambassador representing the views of Young People in Wales, Alison Thomas Cruse Cymru Children and Young People Officer with Cruse Cymru volunteers

Together for Short Lives – the UK organisation on for children and young people who have life-limiting conditions and their families. ‘Unfortunately Children Die Too’ – An opportunity to hear about what is important to the families of these children and the resources available to help them at times of difficult decisions. Jane Houghton Practice and Service Development Manager Together for Short Lives

Age Cymru ‘What Should I do, who can help?’ An interactive stand providing free, confidential and expert advice on matters affecting the over 50s in Wales” Rosanne Palmer Policy Advisor Age Cymru

Aneurin Bevan Health Board Our Byw Nawr partnership – What’s it all about and what’s happening in the area? The Aneurin Bevan Health Board Advance Care Planning team

Macmillan Cancer Support & Marie Curie ‘Welcome to the Byw Nawr Café’ – Simply rest your feet and relax or Join in the Big Conversation on with Macmillan Advance Care Planning nurses and Marie Curie nurses on hand to hear what’s important to you.

*To read the programe above in Welsh click here.


Your Invitation to attend…

screen-shot-2016-11-24-at-14-46-01*To read the invitation above in Welsh click here. 


There is no need to RSVP, simply turn up.


The Digital Legacy Association – One year on

Digital Legacy Association

We launched the Digital Legacy Association one year ago at Hospice UK’s conference. Last week we were delighted to be back in Liverpool to present a poster at this year’s conference.

Over the last year we launched the digital assets and digital legacy framework for hospice professionals, developed the digital assets and digital legacy training course with St Christopher’s Hospice, launched the digital assets and digital legacy leaflet for hospice welcome packs, advised the Law Commission on upcoming changes to UK law and advised the Law Society about solicitor best practice in areas relating to digital assets and digital legacy.

Digital Legacy Conference 2016

Photo from our the Digital Legacy Conference 2016 at St Joseph’s Hospice 

We worked with the Velindre NHS Trust and Aneurin Bevan UHB on the Talk CPR Discuss DNACPR campaign (which recently won an NHS Wales Award), devised a number of Think Tanks and spoke at a number of conferences and events across the country…..It has been a busy year and we have made lots of wonderful friends along the way. We remain committed in raising awareness, standards and best practice amongst professionals and the general public in areas relating to digital assets and digital legacy.

We would like to say a big THANK YOU to everyone we have worked with and we look forward to expanding our work in the year ahead.

NHS Wales Award Winners

We are delighted to announce that the TalkCPR has won an NHS Wales Award within the ‘Improving Quality Together (IQT) Methodology’ category.

The aim of the project TalkCPR’ is to ease communication and dialogue between patients with palliative illnesses and their healthcare professionals in relation to the complex area of Do Not Attempt Cardiopulmonary Resuscitation Decisions (DNACPR). In order to facilitate effective communication and transfer good quality knowledge to patients and those close to them, a novel video and website approach was used .

NHS Wales Awards

The award ceremony was wonderful and we are honoured that Velindre NHS Trust and Aneurin Bevan UHB allowed us to support them with this project.

NHS Wales Award

November speaking engagements

We will be speaking at the upcoming events in November. Please do let us know if you are attending and would like to arrange a meeting to discuss anything relating to digital assets and digital legacy before or after each event.

  • ICCM Conference, Oxfordshire.  31st October – 3rd November
  • Hospice UK Conference Liverpool (poster presentation). 10th- 12th November
  • Cruse Bereavement Care Young Peoples Forum, Llandinam Wales. 23rd November
  • Clic Sargent Young Reference Group, London. 25th November
  • Byw Nawr Senedd National Assembly, Cardiff Wales. 29th November


Hospice Care Week 2016

Hospice Care Week

Hospice Care Week is an annual awareness-raising event to raise the profile of hospice care across the UK. This year our theme is ‘Hospice Care Is…

Hospices will be highlighting the many and varied aspects of hospice care, and what it can mean to people, their families and communities.


Key messages

• Hospice care is high quality, personalised care for adults and children living with terminal and life-limiting illness, supporting them to live life as fully as possible.

• Hospice care is there for everybody who needs it, no matter how young or old, and supports people with a wide variety of illnesses.

• Hospice care is built around what is important to the individual and their loved ones.

• Hospice care can be out in the community, reaching people in all sorts of ways including: community outreach programmes, befriending schemes to reduce loneliness, school projects to raise awareness about hospice care and bereavement support.

• Hospice care is provided wherever someone may be – not just in a hospice building. The vast majority of hospice care is provided in people’s own homes.

• Hospice care puts the needs of the individual at the centre.


Key statistics 

One in three people will be touched by hospice care at some point in their lives.

• The Digital Legacy Association supports hospice and social care professionals with areas relating to digital assets and digital legacy. Support is provided by providing free resources, running training courses and campaigning.

• Hospices across the UK support around 360,000 people each year – that’s 120,000 patients and 240,000 family members.

• More than 125,000 people give up their free time to volunteer in hospices each year. The Digital Legacy Association runs the annual Digital Legacy Conference (last year at St Joseph’s Hospice) to raise awareness and standards amongst professionals supporting patients and the general public with their digital assets and digital legacy.

This year’s Hospice Care Week will take place nationwide between the 3rd to the 9th October 2016.