Starting conversations about dying - Dying Matters Awareness Week

Starting conversations about dying is often not as hard as people might think.

 

Newham Council will be hosting two events for Dying Matters Awareness Week 2022. The event on Friday 6 May 2022 will take place in Canning Town, Community Neighbourhood Centre. MyWishes and a number of other support organisations will be providing residents with information and advice about planning for the future. It will be an educational and thought provoking day. Through conversation and reflection areas relating to death, dying, bereavement, grief and planning ahead will hopefully be more approachable and taboos around these areas removed. 

 

Practical advice will be provided in the following areas:

  • Making a will
  • Advanced Care Planning
  • Lasting Power of Attorney
  • Digital Legacy Planning

 

MyWishes Talks and Support

James and Tom from the MyWishes team will be on-hand between 10am-4pm. We will deliver two practical workshops helping attendees to think about their digital lives whilst providing advice about the things that can be done now to safeguard online content and future wishes.

In-between workshops we will be providing practical one-to-one advice for anyone wanting to document their wishes online or learn more about the importance of planning for death in today’s digital world. Local MyWishes users in Newham wanting to brainstorm or have a chat will be warmly welcomed.

MyWishes talks will take place at 12pm and 3pm. One to one support will also be provided by members of the MyWishes team between the hours of 10am-4pm

How to Attend

 

Simply turn up at the address below at a time that is convenient for you between 10am-4pm on the 6th May. No ticket is required.

Custom House and Canning Town Community Neighbourhood Centre, 18 Rathbone Road, Canning Town, E16 1EH. (Map / Accessibility information). Light refreshments will be available to all those who attend and the venue is classed as accessible.

 

An information stall will also be setup outside of Stratford Mall (opposite McDonalds) on Wednesday 4th May between 10am-2pm.

Learn more about Dying Matters Awareness Week and the support Newham Council provides to residents at: www.newham.gov.uk/dyingmattersweek2022

Learn how to make plans for yourself and those you care about

MyWishes free to use software was developed under the guidance of healthcare, hospice, legal and funeral professionals. Our platforms empowers society to make plans for both themselves and those they care about.

MyWishes
Michael Sobell Hospice 
Palliative Care Department
Mount Vernon Hospital, Gate 3
Northwood HA6 2RN
United Kingdom
(Map)

Sharing is caring…


NDOR virtual candles

National Day of Reflection - Virtual Candles

We are supporting the National Day of Reflection 2022

The National Day of Reflection will be taking place on the 23rd March for the second consecutive year. Its focus is to unite people who are grieving and allocate a day to remember family, friends, neighbours and colleagues we’ve lost over the last two years. MyWishes are proud to be an organisation supporting the day and the awareness campaign.

Virtual Candles

We have designed and developed a number of virtual candles. These can be downloaded, streamed and used for free. Our virtual candles are a safe alternative to traditional candles and have been created in different sizes and formats (videos and animated GIFs). Last year the virtual candles were used across on the country and displayed on TV screens, laptops, mobile phones, tablet devices. They were also displayed in a number of clinical settings.

Scan the QR Code

If you scan the QR code on the image opposite, a virtual candle will instantly start flickering on the device you are using.

How to use a virtual candle

We recommend thinking about which device you will use to display the candle. We also recommend thinking about the reason for using the virtual candle. These might include remembering a loved one, sharing on social media with an accompanying message or displaying in your home.

If you would like to watch a candle flicker for a one minute reflection, we recommend streaming or downloading a virtual candle in a video format.

If you would like to have a virtual candle flicker continuously on a TV, mobile phone, tablet or on your website, we recommend streaming or downloading a virtual candle in an animated GIF format.

Stream a virtual candle (video)

Click on your favourite virtual candle below. Once opened it will flicker for exactly one minute. The virtual candle videos mirrors the one minute silence being held at 12pm and 8pm on the 23rd March.

Download a virtual candle (video format)

You can download a candle to the device you are using. To view the virtual candle videos and download your favourite, click on the download button below

To download virtual candles (videos) onto the device you are using click here

Virtual Candle Animated GIFs (for mobile devices and tablets)

We have designed and developed virtual candles and provided them as animated GIFs. Unlike the video virtual candle, these candles will not stop flickering after one minute. These candles will continue to flicker when displayed. The website links (URLs ) shown below each candle can be copied, pasted and used on websites, blogs and social media profiles. If you click on any of the website links shown below, the virtual candle will instantly be displayed in full screen on your mobile device, computer or tablet you are using (these three candles have been optimised for mobile devices)

Virtual candle

Virtual candle

Virtual Candle

Animated Gifs versions of the virtual candles can be downloaded and streamed by clicking on the button below. Different sizes (aspect ratios) are also available available for different devices.

To download virtual candles (animated GIFs) onto the device you are using click here

Use the virtual candle videos however you want

You might want to display a virtual candle flickering for one minute whilst stood on your doorstep at 8pm on the 23rd March. Alternatively, you might want to position a tablet (iPad, Galaxy Tab, Kindle etc) on a window-ledge and let the animated GIF virtual candle flicker throughout the day .

Virtual candles can also be shared on your favourite social networks by inserting the relevant link into them or uploading the downloaded file.

Displaying a virtual candle on a Wall of Reflection

A Wall of Reflection is a place to share thoughts about loved ones who have died. Walls of Reflection can be created in the home or in a public space. They can be place where people talk with others about loved ones and share memories.

Photos, images, paintings, writings and poems can be attached to a wall. You might also want to display a virtual candle onto a Wall of Reflection. This can be achieved by placing a tablet or mobile phone that displays the candle onto a shelf or by fixing its case to the wall.

Inserting a virtual candle onto a website or blog

Each website and blog is different. The accompanying image highlights a simple way how Wordpress website owners and publishers can insert a virtual candle into a page or post without downloading or embedding it.

Once logged in, simply copy the URL of the virtual candle you would like to use and paste it in the ‘Add media’ section. The candle will flicker automatically and will not require the viewer to press a play button.

To download virtual candles (animated GIFs) onto the device you are using click here

MyWishes

MyWishes is the UK’s leading end of life planning software. Our service is free to use and our community document and share their wishes with their loved ones and anyone likely to provide them with care now or at some stage in the future.

“MyWishes will continue to work hard, support society when documenting their wishes and improve understandings around death and bereavement. We are proud to support the National Day of Reflection and understand the importance of this day for the country” – James Norris, MyWishes.

 

Marie Curie warns that without the right support for people who have been bereaved, the devastation that the pandemic has caused will impact the lives of people for generations.  “We need to mark the huge amount of loss we’ve seen this year and show support for everyone who has been bereaved in the most challenging of circumstances. We cannot simply stand by and not recognise the effects the pandemic has had on the bereaved. We know people are in shock, confused, upset, angry and unable to process what has happened. The National Day of Reflection on 23 March gives us a moment to reflect, remember and celebrate the lives of everyone that has died, as well as show our support to family, friends and colleagues who are bereaved during these challenging times – from Covid and other causes.” – Matthew Reed, Marie Curie 

 

Marie Curie, MyWishes, a number of politicians and other supporting organisations are calling on the nation to take a minute to reflect at 12 noon and 8pm on the National Day of Reflection. To find out more about the National Day of Reflection and how to get involved visit www.mariecurie.org.uk/dayofreflection. If you use social networks, content can be shared on them with the #DayofReflection hashtag.

Scan me

If you use a smart phone (iPhone, Android etc) or a tablet (iPad, Samsung Galaxy, Kindle etc) scan the QR code below with your device. Once scanned a flickering, virtual candle will instantly appear. *Your device will need to have a QR code scanner built into it’s camera for this to work

Virtual candle

MyWishes

MyWishes free to use software was developed under the guidance of healthcare, hospice, legal and funeral professionals. Our platforms empowers society to make plans for both themselves and those they care about.

Learn how to make plans for yourself and those you care about

MyWishes
Michael Sobell Hospice, Palliative Care Department
Mount Vernon Hospital, Gate 3
Northwood HA6 2RN
United Kingdom
(Map)

  • Register and document your wishes for free here
  • To learn how MyWishes works click here

Sharing is caring…

 

View this post on Instagram

 

A post shared by MyWishes (@mywishesapp)


ESCTOX / UKASCC Conference

ESCTOX

ESCTOX / UKASCC Conference – Thursday 17th & Friday 18th March 2022

James from the MyWishes team will be the last speaker at the upcoming ESCTOX / UKASCC conference.

The ESCTOX / UKASCC conference is the first in the UK to focus entirely on supportive cancer care. We have brought together speakers from all over the globe to share their knowledge and expertise, and we welcome delegates from all medical and allied health specialties to learn more about this fast growing field of oncology.

The aim of this 2-day course is to provide a range of up to date, evidence-based guidance on how to anticipate and manage problems associated with cancer and its treatment. Please do join us for this unique event, as we also launch UKASCC – the UK Association of Supportive Care in Cancer.

*CPD Accreditation will be applied for from The Royal College of Physicians

Intended Audience 

Clinical Nurse Specialists, GP’s, Oncologists, General Physicians, Emergency Physicians, Medical Trainees, Research Nurses, Acute Oncology Nurses, palliative care professionals and all Allied Health Professionals involved in cancer treatment options

What to expect

  • New Developments
  • Toxicities of therapy
  • Living well—preservation of performance status
  • Developing the research in supportive care
  • Psychology/QOL/Palliative care

doctor learning

research cancer

“Supportive care makes excellent cancer care possible ” – MASCC 2021

Day 1

09.00 – Online Registration
09.15 – Welcome / Conference opening (day 1) – Dr Richard Berman and Dr Saifee Mullamitha

New Developments (technologies/drugs  – 09.30 – 11.00 Chaired by Dr Claire Higham)

09.30 – New anti-cancer agents: 2022 and beyond
09.50 – Personalised Supportive Care – Dr Maryam Lustberg, Director of the Breast Centre Smilow Cancer Hospital, Yale Cancer Centre, USA
10.20 – Digital Technologies – Paolo Bossi, Associate Professor of Oncology, Universita delgi Studi di Brescia, Italy
10.50 – Panel discussion
11:00 – Coffee Break

Toxicities of Therapy (11.15 – 13.00  Chaired by Dr Saifee Mullimaitha)

11.15 – Emerging Immunotherapy toxicities  TBC
11.35 – Bone Health during treatment – Dr Claire Higham, Consultant Endocrinologist, The Christie NHS FT
11.55 – A nephrologists guide: how to look after your kidneys – Dr Tam AlSayed, Honorary Consultant Acute and Critical Care, The Christie NHS FT
12.15 – VTE – Dr Simon Noble, Marie Curie Professor in Supportive and Palliative Medicine, University Hospital of Wales, Cardiff
12.40 – Panel Discussion
13:00 – Lunch

Living Well –preservation of performance status (13.30 – 15.30  Chaired by Dr Daniel Anderson)

13.30 – Integrative medicine (CIM) in the treatment of chemotherapy-induced toxicities – Prof Judith Lacey, Head of Supportive Care, Life house Australia
13.50 – Lifestyle medicine and cancer care – Dr Stephen Kennedy, Consultant in Clinical Oncology, The Christie NHS FT
14:10 – Sarcopenia – Dr Alexandra Lewis, Clinical Fellow in Medical Oncology, The Christie NHS FT
14.30 – Lets talk about sex – Isabel White
15.00 – Panel Discussion
15:15 – Coffee Break

Psychology / QOL / Palliative Care (15.30- 17.00  Chaired by Dr Richard Berman)

15.30 – Surviving Cancer Well – Hannah Wardill, NHMRC CJ Martin Biomedical Research Fellow, Supportive Oncology Research Group | School of Biomedicine, University of Adelaide
15.50 – Integration of Palliative Care within Supportive Care – Dr Ashique Ahamed, Consultant in Palliative Medicine, The Christie NHS FT
16.10 – Common mental health problems and their treatment – Dr Daniel Anderson,  Consultant Psychiatrist and Psychotherapist, Division of Cancer Services, University of Manchester
16.30 – Enhanced Supportive Care: less chemotherapy for equal survival – Dr Daniel Monnery, Palliative Care Consultant, The Clatterbridge cancer Centre
16.50 – Panel Discussion

Day 2

09.00 – Online Registration

What can we learn from Industry (09.15 – 10.15 Chaired by Dr Richard Berman)

09.15 – Supportive Care and commercial technology: the rise of photobiomodulation – James Carroll, CEO Thorlaser
09.45 – Commercialising Supportive and Palliative Care – Charlotte Healey, CEO, SCUK Ltd
10.10 – Panel discussion
10:20 – Coffee Break

I had Cancer: stories from survivors (10.30 – 12.00 Chaired by Dr Richard  Berman and Dr Saifee Mullimaitha)

10.30 – Patient Story 1— TBC
10.50 – Patient Story 2—Paul Berman
11.10 – Patient Story 2—Nerys Lyne
11.30 – Panel Discussion

Developing the research in supportive care / LWBC (12.30 – 14.00)  Chaired by Dr Ashique Ahamed

12.30 – UK Oncology research and supportive care – Prof Sam Ahmedzai, Emeritus Professor, The University of Sheffield and Chair of NIHR Cancer & Nutrition Collaboration
12.50 – Cannabinoids in Cachexia – Dr Barry Laird, St Columba’s Hospice Reader in Palliative medicine, Institute of genetics and cancer, University of Edinburgh & Consultant in Palliative Medicine, St Columba’s Hospice and Edinburgh Cancer centre
13.10 – Research & supportive oncology: time for a new approach? – Prof Fiona Blackhall, Professor of Thoracic Oncology and Honorary Consultant in Medical Oncology, University of Manchester and The Christie NHS FT
13.30 – UK Oncology research and supportive care – Professor Sara Faithful, NCRI Lead for Living with and Beyond Cancer
13.50 – Panel discussion

The future of supportive care & official launch of UKASCC (14.00 – 14.30  Chaired by Dr Richard Berman

14.00 – The Multinational Association of Supportive Care in Cancer – Prof Andrew Davies, Professor of Palliative Medicine, Trinity College Dublin, University College Dublin & Our Lady’s Hospice Dublin
14.20 – The rise of supportive cancer in the UK – Dr Richard Berman, Consultant in Palliative medicine, The Christie NHS FT
14:35 – UKASSC: official launch ceremony
14:45 – Coffee Break

Children and Young Adults with Cancer (15.00 – 16.15)  Chaired by TBC

15.00 – Later treatment toxicities in children – Dr Martin McCabe, Honorary Consultant in Paediatric and Teenage and Young Adolescent Oncology, The Christie NHS FT
15.20 – Role of supportive care within Paediatric Oncology – Dr Bob Philips, Honorary Consultant in Paediatric and Teenage and Young Adult Oncology, Leeds Teaching Hospitals NHS FT
15.40 –  Digital Legacies  – James Norris, The Digital Legacy Association and MyWishes
16.00 – Panel Discussion
16.10 – Summary and close of conference

 

    

CPD Accreditation will be applied for from The Royal College of Physicians. This event will take place virtually and all of the sessions will available to watch back on demand to the registered participants.

Other news that might be of interest

Learn how to make plans for yourself and those you care about

MyWishes free to use software was developed under the guidance of healthcare, hospice, legal and funeral professionals. Our platforms empowers society to make plans for both themselves and those they care about.

MyWishes
Michael Sobell Hospice 
Palliative Care Department
Mount Vernon Hospital, Gate 3
Northwood HA6 2RN
United Kingdom
(Map)

Sharing is caring…


International Day of People with Disabilities - Spotlight on Postural Care Planning

International day for people with disabilities

The Convention on the Rights of People with Disabilities is an international human rights treaty of the United Nations intended to protect the rights and dignity of people with disabilities.

Today on the 3rd December is the annual celebration of people with disabilities. The 2021 theme is ‘Fighting for rights in the post-COVID era.” This year, International Day of People with Disabilities is being used to recognise that people who live with disabilities are among the most affected populations amid the COVID pandemic. Where marginalisation, discrimination, vulnerability and exploitation are every day factors for many people, the increased risk of poor outcomes have been magnified with the reduced access to routine health care and rehabilitation services, more pronounced social isolation, poorly tailored public health messaging, inadequately constructed mental health services, and a lack of emergency preparedness for people with special needs.

IDPWD 2021 Call to action

“To learn from the experiences of people living with disabilities during this pandemic, and push for more meaningful investments into the socioeconomic building blocks which will reduce the barriers faced by people with disabilities in every community on earth”.

To learn more visit: https://idpwd.org/

MyWishes Spotlight

This IDPWD we have decided to spotlight an innovation we created to help support people with accessing and sharing their postural care assessments. This was a collaboration between MyWishes and a physiotherapist working for NHS Wales.

What is a Postural Assessment and why are they important

“As a physiotherapist, the majority of my children, young people and adults, are very complex and as such have multiple pieces of equipment which help provide 24 hr postural support. With so many pieces of equipment and so many brands on the market, each piece requires detailed information in how to position the person and how to make adjustments. This is very time consuming as we then have to train each individual person, but this vital information is lost if they are then admitted to hospital.”

If our service users are not positioned properly, this can have a major impact on their quality of life and could even prove fatal. Incorrect positioning can result in not being able to engage with their peers and family, issues with tissue viability and even aspiration pneumonia, which is one of most common reasons of fatality with an incidence rate of 70%.Currently information is laid out on an A5 laminated card which is clipped to the persons wheelchair. However this relies on the information being taken with the person, which is highly unlikely if that person is admitted to hospital, as wheelchairs rarely go with the person until the point of discharge. A digital version of this would allow access to vital information very quickly. 

– Samantha Chadwick (Paediatric & LD Physiotherapist)

Postural Care Passport

Last year we developed a feature on MyWishes that enables people to have their postural care assessment digitised and rapidly available in both clinical and non-clinical settings.

Once the plan has been completed, Physiotherapists email the Postural Care Assessment to those they support. Our new feature allows this document to be uploaded to MyWishes and made available digitally with the addition of high quality photos and videos can provide a much more detailed visual description of how someone should be positioned within a wheelchair and when lying down . Audio instructions captured within videos can provide more precise guidance and lead to improved comfort, better levels of care and reduce the number of avoidable deaths. 

Traditional Postural Care Assessments

Postural Care Passport Team

Our team consists of professionals and experts with a range of different skill sets. Between us we theorised, designed and ‘hacked’ a solution together. 

Accessing the Postural Care Passport

Once uploaded, the postural assessment can be accessed by anyone who has been provided the memorable word or phrase linked with their postural assessment. The word or phrase might be shared with friends, family members and those involved with someone’s care

The person requiring access to the postural care passport simply needs to visit the person’s unique, public URL or scan a QR code that is linked to the service user’s postural care passport. They will land on a page optimised for both web and mobile devices. 

   

*Scan this QR code with your mobile device

Postural Care Passport Poster

  • We presented and showcased this innovation at the European Association of Palliative Care World Congress 2021. To view this poster in high quality click here
  • We provided an oral presentation at the Palliative Care for People with Learning Disabilities Conference 2021. PCPLD will publish a video of the presentation in due course

 

Learn how to make plans for yourself and those you care about

MyWishes free to use software was developed under the guidance of healthcare, hospice, legal and funeral professionals. Our platforms empowers society to make plans for both themselves and those they care about.

MyWishes
Michael Sobell Hospice 
Palliative Care Department
Mount Vernon Hospital, Gate 3
Northwood HA6 2RN
United Kingdom
(Map)

Sharing is caring…


Self Care Week 2021

Self Care Week Reminds us to Practise Self Care for Life

Self Care Week is the annual national event that raises awareness of what we can all do to improve our physical health and mental wellbeing. This year, the theme is Practise Self Care for Life.

The organiser of Self Care Week is the Self Care Forum, a charity which aims to empower and encourage everyone to make self care their everyday habit.  And the Self Care Forum knows just how important this message is, particularly when times are as tough as they are right now.

Incorporating the practise of self care into our everyday lives can help us to live as healthily as possible. And better health for us can help us cope better with the challenges that come our way.

Self Care Week is a perfect time to think about how we live our lives and maybe make some small changes that will help us take better care of ourselves and our families. Those changes could mean looking at what we eat or drink, or how much exercise we do or how much sleep we are getting. They could be about our work life balance, because staying connected to our friends and family is also vital to our wellbeing, and theirs.

Knowing what to do and where to go for help is an important part of practising self care for life. Remember, it isn’t just the GP practice that can help, pharmacies are also health experts. They are on every High Street and can help with all sorts of ailments. Pharmacists can also signpost you to the right place for additional health advice or treatment.

Remember, NHS 111 can also be a good resource for health advice for things that are not life-threatening. And the NHS website has lots of information on what steps to take to look after you and your family. https://www.nhs.uk/ The Self Care Forum also has some useful fact sheets you might like to download. https://www.selfcareforum.org/fact-sheets/

The important thing to remember is, practising self care is something we all need to do every day. For ourselves.  For our families.  And for the NHS.

wellbeing

MyWishes Self Care Tutorials

Below are a number hand picked, self care tutorials you might find of value. These guides and resources might help improve aspects of your spiritual, social and psychological wellbeing.

Why make plans?

Making plans for yourself, the people and the things you care about can feel hugely rewarding. Knowing that plans have been put in place can help reduce anxieties around death, dying, bereavement and the future.

Once plans have been made they can be used to have practical and often non-morbid discussions around your wishes.

 

Other news that might be of interest

Learn how to make plans for yourself and those you care about

MyWishes free to use software was developed under the guidance of healthcare, hospice, legal and funeral professionals. Our platforms empowers society to make plans for both themselves and those they care about.

MyWishes
Michael Sobell Hospice 
Palliative Care Department
Mount Vernon Hospital, Gate 3
Northwood HA6 2RN
United Kingdom
(Map)

  • Register and document your wishes for free here
  • To learn how MyWishes works click here

Sharing is caring…


Dr Ros Taylor MBE and Professor Mark Taubert

Speaking at the Digital Legacy Conference

Digital Legacy Conference

The Digital Legacy Conference, Tues 5th October, 2021  (from 4pm UK time until 10PM) – PalliCovid & Exploring New Dimensions’

Our Founder, James Norris will co-chair the Digital Legacy Conference 2021 with Dr Ros Taylor MBE, Clinical Director at Michael Sobell Hospice and Harlington Hospice.

MyWishes design lead, Marcos Sebastian will also present a paper at the conference titled ‘Designing for death, evolving DeadSocial into MyWishes’. His paper can be read below:

Design is a hugely important element in which us humans are able to understand a charity or organisation’s goals. The design and branding can visualise both the service provided and values the organisation aligns itself to. When designing an end of life planning platform or service, it is difficult to highlight the multitude of different messages required. MyWishes objective was for the design to help install credibility, security, compassion and engagement in a non-morbid and accessible way.

In this seminar, MyWishes’ design journey will be used as a case study. Starting from its original ‘DeadSocial’ concept more than 10 years ago, this chronological journey will outline the design process and the different design iterations along the way. The seminar will conclude with exploring the current MyWishes design and the design principles behind it.

Explorations around design, user experience, colours and layout will take place. It is hoped that design principles and information shared will assist others developing other end of life resources both on and offline.

About the Digital Legacy Conference

The importance of our digital lives is increasing. Personal, digital photos and videos are often saved behind password protected devices. The monetary value of purchased media, online only services and digital assets is also increasing. Managing and transferring digital possessions and online services upon death is becoming fragmented and complex.

It is important that professionals are able to assist patients, families and those they serve with relevant support and advice. The Digital Legacy Association argue that ‘digital assets planning and digital legacy safeguarding should form a holistic approach to advance care planning’

The International Digital Legacy Conference 2021 will take place on the eve of the European Association of Palliative Care World Congress 2021 (EAPC 2021). This year’s Digital Legacy Conference will be streamed live and be featured as part of EAPC 2021. The live stream will be accessible for free with an EAPC ticket. For those who are not attending EAPC 2021, a Digital Legacy Conference ticket can be purchased for £20 when visiting the Digital Legacy Conference website or directly from this ticket link.

Dr Ros Taylor MBE and Professor Mark Taubert

Full Programme (UK time / BST)

 

  • 4:00pm: Welcome to the new world, a new world in which we all inhabit – Dr Ros Taylor MBE, Palliative Physician. Former Clinical Director at Hospice UK, Medical Director at Michael Sobell Hospice and Harlington Hospice. Trustee at Nightingale Hammerson Care Home & James Norris, Digital Legacy Association, MyWishes & Michael Sobell Hospice (UK)
  • 4:20pm: Why Nothing We Do Online Will Exist After We Die and That’s Ok. – Dr John Troyer, Bath University
  • 4:40pm: Life, death… Shouldn’t we talk about it with students? Issues arising from the creation of an online platform for the French medical and school staff – Nicolas El Haïk-Wagner & Caroline Tête, French Society for Palliative Care
  • 5:00pm: Netiquette for Dealing with Illness, Death, and Grief: Has COVID-19 impacted the rules? – Dr Carla Sofka, Siena College
  • 5:20pm: The posthumous privacy paradox: Privacy preferences and behavior regarding digital remains – Tal Morse, Hadassah Academic College & Michael Birnhack Tel Aviv University
  • 5:40pm: “They were part of the family” – a look at grieving for a pet online. – Stephanie Owens, Cochrane and Dying Matters
  • 6:00pm: Digital Executor®: Unraveling the New Path for Estate Planning – Sharon Hartung, Captain (Ret’d), PEng, TEP, is the founder of Your Digital Undertaker
  • 6:20pm: Digital afterlife and the spiritual realm – Maggi Savin-Baden, University of Worcester, UK
  • 6:40pm: Why creating a digital shrine for my Dad helped me with my grief. – Sandy Weatherburn, Social Embers
  • 7:00pm: Designing for death, evolving DeadSocial into MyWishes – Marcos Sebastian, MyWishes Design Lead
  • 7:20pm: Living beyond death; who cares? – Dr Erica Witkamp Professor Care for Family Caregiving, Faculty of Nursing and Research Center Innovations in Care, Rotterdam University of Applied Sciences, Rotterdam, The Netherlands. Rob Bruntink, Journalist, Owner of Bureau MORBidee, The Netherlands & Judith Rietjens, Associate professor, Dept. of Public Health, Erasmus University Medical Center, The Netherlands
  • 7:40pm: Designing for Choice at the End of Life: does COVID-19 Shift our Collective Experience of Death Online? – Dr Stacey Pitsillides, Northumbria University
  • 8:00pm: Cryptocurrencies, Cryptoassets, and Inheritance Planning – Pamela Morgan, Empowered Law
  • 8:20pm: Palliative Pandemic and its Digital Divides – Professor Mark Taubert, Cardiff University
  • 8:40pm: Digital Legacy and the idea of life as a work of art – Steve Fuller, University of Warwick
  • 9:00pm: 2040: Death, bereavement and digital legacies – Maneesh Juneja, Digital Health Futurist (Keynote)
  • 9:40pm: Closing remarks –  Dr Ros Taylor MBE, Palliative Physician. Former Clinical Director at Hospice UK, Medical Director at Michael Sobell Hospice and Harlington Hospice. Trustee at Nightingale Hammerson Care Home & James Norris, Digital Legacy Association, MyWishes & Michael Sobell Hospice (UK)
  • 10:00pm: Close

Ticket information

The Digital Legacy Conference is a not for profit event run annually by the Digital Legacy Association. Previous conferences have taken place at UCL Partners (London), Sienna College (New York), EAPC (Berlin) and St Joseph’s Hospice (London). If you would like the Digital Legacy Conference 2022 to take place at your conference, congress, university, office or place of research please do get in touch 

The Digital Legacy Conference is a not for profit conference organised by the Digital Legacy Association.  It is able to take place each year due to the kind support provided by sponsors, supporters and volunteers. If you or your organisation is interested in sponsoring this year’s conference click here. This year’s venue partner is Michael Sobell Hospice in London, the event partner is the European Association of Palliative Care and supported by MyWishes 

The Digital Legacy Conference is free to attend for EAPC 2021 ticket holders. Alternatively tickets for the Digital Legacy Conference (and not EAPC) can be purchased for £20 by clicking here

Other news that might be of interest

Digital_Legacy_Association
Learn how to make plans for yourself and those you care about

MyWishes free to use software was developed under the guidance of healthcare, hospice, legal and funeral professionals. Our platforms empowers society to make plans for both themselves and those they care about.

MyWishes
Michael Sobell Hospice 
Palliative Care Department
Mount Vernon Hospital, Gate 3
Northwood HA6 2RN
United Kingdom
(Map)

Sharing is caring…


The Palliative Care Society of Trinidad and Tobago - Conference

8th Palliative Care Conference 2021

 

James Norris from MyWishes has been asked to speak at the The Palliative Care Society of Trinidad and Tobago’s annual, Palliative Care Conference. This year’s programme includes Dr. K. Suresh Kumar, Director of WHO Collaborating Center in Community Participation in Palliative Care and Long-Term Care, Dr. Leah Steinberg, MD, MA, CFCP Palliative Care Consult Team Mount Sinai Hospital, Dr. Nicholas Jennings, Critical Care RN

The Palliative Care Society of Trinidad and Tobago invites all all Health Care Professionals & Caregivers to its 8th Palliative Care Conference 2021. This year’s theme is ‘Palliative Care in a Changing World’. It will take place virtually on Sunday October 10, 2021 From 8:00am to 3:30pm.

TICKETS / REGISTRATION FEE

To attend this conference please select the ticket that best suits your profession and where you are located.

 

Residents (prices in Trinidadian Dollars / TTD)

Doctors with CME – $300 TTD ; Nurses, Ancillary Health Care Providers with CME – $200 TTD, Medical Students with Valid ID with CME – $100 TTD ; Members of the Public – $200 TTD.

Non-Residents (prices in American Dollars / USD)

$45 USD, with CME $70 USD

 

CONFERENCE REGISTRATION:

For more details Contact Mr. Saty Seemungal 868-223-7078 / Mr. Leslie Harripaul 868-222-3781 / Mr. Nigel Aqui 868-622-8948. To Register online please complete the attached registration form and email it to palliativecstt@gmail.com

This event is run by the Palliative Care Society of Trinidad & Tobago & the Trinidad & Tobago Medical Association.

Other news that might be of interest

Learn how to make plans for yourself and those you care about

MyWishes free to use software was developed under the guidance of healthcare, hospice, legal and funeral professionals. Our platforms empowers society to make plans for both themselves and those they care about.

MyWishes
Michael Sobell Hospice 
Palliative Care Department
Mount Vernon Hospital, Gate 3
Northwood HA6 2RN
United Kingdom
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Organ Donation Week

It’s Organ Donation Week 2021

It is Organ Donation Week and this year’s theme is ‘Leave Them Certain’. This campaign aims to encourage people to talk to their loved ones about organ donation through highlighting that families are always involved before organ donation goes ahead.

No matter what your organ donation wishes are, it is vitally important that they are documented and relevant conversations take place with at least one friend or family member.

What is organ donation?

Organ donation is when one person chooses to give an organ to save or improve the life of someone else.

Although the law around organ donation has changed to an opt out system in many parts of the UK, your family will still be consulted if organ donation is a possibility.

Your family can overturn your decision

Each year, hundreds of opportunities for transplants are missed because families aren’t sure what to do.

Your family will always be consulted about whether you wanted to be an organ donor or not, and clinicians will never proceed with organ donation if your family or loved ones object.

 

Leave them certain

 

If you want to donate

If you want to be an organ donor after you die, it’s really important that you talk to your loved ones and make sure they understand and support your organ donation decision. You can also register your decision on the NHS Organ Donor Register.

If you don’t want to donate

If you decide not to become an organ donor, you can still help your family through a difficult time by talking to them about your organ donation decision now, and making sure they know what you want. You can also register your decision on the NHS Organ Donor Register.

Documenting your Organ donation preferences on MyWishes

Once you have registered as an organ donor, it is easy to include this information within your MyWishes advance care plan. Once completed, email it to someone you trust and print out at least one hard copy for your own records.

advance care plan

Learn how to make plans for yourself and those you care about

MyWishes free to use software was developed under the guidance of healthcare, hospice, legal and funeral professionals. Our platforms empowers society to make plans for both themselves and those they care about.

MyWishes
Michael Sobell Hospice 
Palliative Care Department
Mount Vernon Hospital, Gate 3
Northwood HA6 2RN
United Kingdom
(Map)

Sharing is caring…


Green Man festival death talk

Starting conversations about death at Green Man Festival

MyWishes at Green Man Festival

We are delighted to announce that we will be part of a conversation event about death in today’s digital world at Green Man.

About Green Man Festival

The Green Man Festival is an independent music and arts festival held annually in the Brecon Beacons, Wales. Founded in 2003, it has evolved into a 25,000 capacity four-day event, showcasing predominantly live music, but also science and comedy events.

Where and when will you be?

The session will take place on the Omni stage in Einstein’s Garden on Saturday between 14:45 – 15:30.  Jude Rogers (Guardian Journalist), James Norris (MyWishes) and Professor Mark Taubert (Cardiff University) will be in conversation and getting the audience involved.

Omni Tent

Why is a care planning and digital legacy platform involved with a music festival?

It is important that everyone thinks about death and makes plans for both themselves and their loved ones. As part of our public engagement and death education programme we address death in creative and engaging ways. This is reflected in our free to use app, how we debunk and demystify death in our learning section and the ways in which we reframe death and dying using a public health approach. At this year’s Green Man festival our founder will be encouraging mindfulness with a deeper exploration of death and dying.

 

 

Creating conversations about death at festivals

Death and dying are part of our lives and the topic is ever-present in the arts, so festivals like Green Man are no exception. Many people have been affected by Covid-19 and there have been a large number of unexpected death, leaving many to grieve. It is written about in songs, used as inspiration for poetry and even has a genre of music named after it, death metal. Stepping into the science area of the festival to take some time out and listen, reflect and even interact with this part of all our lives, may not come naturally to everyone, but we hope that people will leave with a positive experience. If you run a festival and would like us to help facilitate such conversations, art installations or happenings, then please do get in touch.

Other events we have contributed to…

MyWishes ‘You only die once’ popup shop on Camden High Street, London

Other news that might be of interest

Learn how to make plans for yourself and those you care about

MyWishes free to use, ‘tech for good’ innovation. It was developed under the guidance of healthcare, hospice, legal and funeral professionals. Our platform empowers society to make plans for both themselves and those they care about.

MyWishes
Michael Sobell Hospice 
Palliative Care Department
Mount Vernon Hospital, Gate 3
Northwood HA6 2RN
United Kingdom
(Map)

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digital care passport

We will be speaking at PCPLD Network Annual Conference

Palliative Care for People with Learning Disabilities - Conference

We are delighted to announce that we will speaking at Palliative Care for People with Learning Disabilities (PCPLD) annual conference. It is taking place in the 16th September and this year’s theme is ‘Finding the gaps and closing the gaps
Dying, death, bereavement, COVID-19

The (Digital) Postural Care Passport

Our oral abstract will demonstrate how our new, digital postural care passport works and the value it brings for MyWishes users and the health ecosystem.

The Postural Care Passport Team

PCPLD Speakers & Tickets

Other speakers include:

  • Professor Mark Taubert, NHS Palliative Medicine Consultant and Professor Cardiff University School of Medicine,
  • David Harling, Head of Learning Disability Nursing, NHS England,
  • Dr Jo Elverson, Consultant in adult palliative medicine, St Oswalds Hospice
  • Dr Kathryn Mannix. Retired Palliative Care Physician and author of ‘With the End in Mind’ and ‘Listen’

Tickets can be purchased by clicking here.

digital care passport

Other news that might be of interest

Below is a stream of recent news from the MyWishes team. If you do not want to read and would rather learn about MyWishes and how our platform works click here

Learn how to make plans for yourself and those you care about

MyWishes free to use software was developed under the guidance of healthcare, hospice, legal and funeral professionals. Our platforms empowers society to make plans for both themselves and those they care about.

MyWishes
Michael Sobell Hospice 
Palliative Care Department
Mount Vernon Hospital, Gate 3
Northwood HA6 2RN
United Kingdom
(Map)

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