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
(Map)

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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)

Sharing is caring…


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)

Join the conversation…


Public Health England

COVID-19: New guidance for managing a funeral or commemorative event

Public Health England

The rules on funerals and commemorative events, such as stone setting ceremonies, the scattering of ashes or a wake have changed.

There is no longer be a maximum number of attendees set out in law for funerals or commemorative events. Instead, the number of attendees will be determined by how many people the venue or outdoor space can safely accommodate with social distancing measures in place. This will be based on the COVID-19 risk assessment of the venue or outdoor space, and the measures put in place to limit the spread of COVID-19. Further changes documented within the latest guidance can be found in the document shown. This can be viewed on the website or downloaded locally to the device you are using. 

 

Funeral tutorials that you might find of interest

Managing_a_Funeral_Guidance_Long_Step-3b (1)

Document your funeral wishes for free

You can document your funeral wishes on for free on MyWishes by clicking here. Once completed, share your wishes by printing out your document or emailing it to someone you trust

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)

What we are talking about…


EAPC2021

MyWishes at EAPC 2021

MyWishes presenting at EAPC 2021

We are delighted to announce that we will be sharing information about MyWishes’ impact at the European Association of Palliative Care World Congress. EAPC is a membership organisation dedicated to lobbying and advocating for the promotion and development of palliative care throughout Europe. Their congress brings together professionals and innovators from across the globe enabling the sharing of ideas, methodologies and best practice. We will be presenting two posters highlighting both how MyWishes is ‘democratising death using technology during the COVID-19 pandemic’ and ‘improving postural care assessments in Wales’.

EAPC2021

Paper 1: Democratising death using technology during the COVID-19 pandemic

When the COVID-19 pandemic started we decided to make everything on MyWishes free to use and in doing so, democratise end of life planning. We wanted to reinvent care planning and make it relevant for today’s digitally savvy generation. It is important that despite providing a complex service for our community, the platform is intuitive and simple to understand and use. This was achieved by adopting intelligent, user-centred design principles, providing videos tutorials in each section and clear informative information.

This presentation will highlight how we are changing the ways in which our community thinks about death and makes plans for it on MyWishes.

Paper 2: Digitalising and improving postural assessments in Wales - Health Hack and the Postural Care Passport

Postural assessment information is often laid out on an A5 laminated card is clipped to the person’s wheelchair. When someone is admitted to hospital, wheelchairs rarely go with the person until the point of discharge. Our goal was to develop a tool that digitises the postural assessments and makes is rapidly available in all settings in case of emergency. This ‘challenge’ was set at NHS Wales ‘Health Hack’. The challenge needed to be developed (hacked) together and demoed within one week.

We worked intensively and collaborated with NHS Wales professionals for one week to deliver the innovation. The solution allows completed assessments to be uploaded. Photos and videos instructions can also be uploaded providing more detailed guidance. Once uploaded the assessments can be rapidly accessed  by entering the memorable word into the person’s unique MyWishes URL (sometimes called a ‘handle’).

We deployed the feature and it is now available on MyWishes and free for those living in England, Wales and Scotland.

 

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)


Disability Confident Committed

Disability Confident Committed

 

MyWishes were recently certified by as being disability confident committed employer. Disability Confident is creating a movement of change, encouraging employers to think differently about disability and take action to improve how they recruit, retain and develop disabled people. It was developed by employers and disabled people’s representatives.

This national certification is facilitated by the Department of Work and Pensions and valid within England, Wales and Northern Ireland.


Virtual candles launched for the National Day of Reflection

Virtual candles, free to download and use

MyWishes have created virtual candles ahead of the National Day of Reflection on 23 March 2021. The virtual candles are free to use and available in different styles and formats. Virtual candle videos flicker for exactly one minute mirroring the one minute silence being held at 8pm on the 23rd March. Animated GIF versions have also been developed and flicker continually.

Virtual candles can be used by people who do have candles in their homes during moments of reflection. They can also be used by children as a safe alternative to a traditional candle.

Spearheaded by end of life charity Marie Curie the day of reflection is taking place one year after the UK went into it’s first national lockdown. Marie Curie estimates that over three million people have been bereaved since the pandemic began, yet many have been unable to properly say goodbye to loved ones or grieve.

The National Day of Reflection will give the nation and communities a moment to remember, grieve and celebrate everyone who has died during this time and show support for our families, friends and colleagues who are grieving.

MyWishes are a supporting organisation for the day and we wanted to contribute by developing something that is of value and can be used by all. The virtual candles  can be used on different devices and optimised for sharing on different social networks.

How to use the virtual candles

Click on the URL (website address) assigned to the video or animated GIF that you would like to use during moments of reflection. If you would like to share a virtual candle online, write a message and insert the URL into the message.

Choose your favourite virtual candle

Click on the virtual candle that you would like to use from the images below. A new window will open in your browser or in your phone and automatically play the flickering candle from Youtube for one minute. The Youtube URL (website address) can then be added to accompany a message of reflection or a story about a loved one.

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

To download the virtual candle optimised for use on Facebook Stories and Instagram Stories 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 over the course of the day and let the animated GIF candle flicker throughout the day .

We have created the virtual candles, it is up to each person to decide how they might want to use and display them.

Virtual Candle Animated GIFs

Below are three animated GIFs. Unlike the virtual candle videos these candles will not stop flickering after 1 minute. Instead these candles will continue to flicker when used on a phone or embedded onto a website or blog until the device or page is closed. The URLs (website addresses) below each candle can be copied, pasted and used on social media sites. If you click on any of the URLs below, the virtual candle will instantly be displayed in full screen on your mobile device, computer or tablet

Virtual candle

Virtual candle

Virtual Candle

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 the page or post.

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, health and wellbeing planning software. Our service is free to use and we are based at Michael Sobell Hospice in North London. Over the last year we have had to adapt our service to the changing needs of society and the communities we serve. “We will continue to work hard helping our users to document their wishes and improve understandings around death and bereavement. We fully support the National Day of Reflection and understand the importance of this day for the country” – James Norris, founder of 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. Marie Curie Chief Executive Matthew Reed said: “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.”

 

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 on the National Day of Reflection on 23 March for those who have died during the pandemic; and take a moment to connect with someone who has been bereaved. They also call upon those willing and able to shine a light on their doorstep at 8pm. A virtual candle is one way to do this.

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
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…

 

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A post shared by MyWishes (@mywishesapp)


March Update

We have been busy over the past couple of months deploying and improving different parts of the platform. We would like to say “thank you” to all of the recommendations and support provided during this time from clinicians and you, our wonderful community of users.

New Dashboard

We have improved MyWishes user experience by refreshing the dashboard’s design. It now also includes a dynamic feed from both the MyWishes blog and the MyWishes tutorial section. Further updates will be pushed through on the dashboard towards the end of April.

New postural care assessment tool

Our new postural care assessment feature enables postural care records to be available in both clinical and non-clinical settings. This feature was built following a needs assessment by a physiotherapist working for NHS Wales. It is now available for all users in England, Wales and Scotland.

MyWishes featured in two new books

The two latest books MyWishes have been listed are…

  • BJ Miller ‘A Beginner’s Guide to the End: How to Live Life to the Full and Die a Good Death’.
  • Liz Rothschild ‘Outside the Box: Everyday stories of death, bereavement and life’

Both are fantastic publications and we recommend buying them both!

Raising awareness about the importance of making plans

The COVID-19 pandemic has meant that conferences and events are increasingly taking place online. During this time we continue to raise awareness about the importance of documenting our wishes. The last two events we spoke at were Pathfinders Neuromuscular Alliance ‘planning for an emergency’ and ‘How the internet can be used to improve end of life conversations and end of life planning’ for the Fellowship in Palliative Care (an advanced course run by the Institute of Palliative Medicine, India in partnership with Sanjeevan Palliative Care Project, Pondicherry, India, St Christopher’s Hospice).

Supporting ‘Festival Spirit Presents…March Madness’.

MyWishes is an event partner for the upcoming March Madness festival.

March Madness is a free to attend music festival taking place this Spring Equinox on the 20th March 2021. The online festival will feature an array of disabled and non-disabled music artists, thought leaders, comedians and poets.

SK Shlomo (above) will host and MC the festival

With self-isolating, shielding measures and the cancellation of festivals the charity ‘Festival Spirit’ have decided to bring the festival spirit into peoples’ homes. The event is free for all to attend and tickets are now available from www.MarchMadness.co.uk

Acts range from the rapper Kray-Z Legz to the Olympic gold medalist, Greg Searle MBE.

What’s next?

We continue to work hard supporting our ever growing community of users. Once registered, our users are documenting their wishes and sharing them with their with their loved ones and relevant professionals. We will continue to innovate and support society with all aspects of future planning and digital legacy preservation in the months, years and decades to come.

March Madness

MyWishes makes future care planning easy, free and simple. Our innovation developed with guidance, feedback and direction provided by the general public, members of NHS England, The Law Society, The National Association of Funeral Directors and Hospice UK. MyWishes is suitable for those over the age of 18 who have not made plans for their possessions, their online possessions (digital assets), their future health preferences (advance care plan), their funeral wishes and their bucket list. MyWishes is based at Michael Sobell Hospice in the UK.

To login to your MyWishes account or to create an account for free click here

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


New Book - Outside The Box

Introduction

The importance we place on our digital lives is increasing. MyWishes have developed a number of innovative services that make planning for our digital lives easy. We have made all of these services free and by doing so we are helping people from across the globe safeguard their digital assets (photos videos, images etc) whilst helping our users make plans for their wider wishes.

For people wanting to leave ‘Goodbye messages’ to be published after their death, schedule messages into the future and write their own obituary our ‘Goodbye Messages’ and ‘Funeral Wishes’ tool provides a robust and (once again) free way to do so.

Our founder James has been helping society and professionals better understand death in relation to the internet and connected devices for the last 10 years. He has advised governments, governmental agencies, non-governmental agencies and the largest social networks about this increasingly important area. James has spoken on BBC Breakfast, BBC Click, CNN, Channel 4 News and has been featured in the New Scientist. His latest contribution is for the new publication, ‘Outside the Box’

Outside The Box

We live in a society where people struggle to look death in the eye. Death has become the territory of professionals and we rarely see a dead body, unless it is someone very close to us. Death has become hidden, and so more traumatic. This book shows that, if we start talking openly about death, it can change the way we live. In it, people from all walks of life share their experiences and what they have learned from accompanying others. Heartbreaking, angry, questioning and contradictory – even laugh-aloud funny – the stories illuminate, inspire, reassure and inform. They are accompanied by advice and comment from professionals working in end-of-life planning, health, bereavement and funeral care.

‘Nothing can fully prepare us for death, but this fabulous book is as close as we’ll get. More than any other book I’ve read on the subject, and I’ve read many, this gives you directions and permission to have the death you want, either for yourself or for someone you love. The shared stories of death are wise, moving, useful and sometimes funny, and the expert commentaries offer excellent advice without being too prescriptive. Of course, we may not get the death we imagined – it can be a messy and unpredictable business. But this book gave me the sense of joining in and contributing to the most important conversation we may ever have. We are all going to die, but how we do it really matters. So let’s start listening and talking…’

-Phil Hammond, NHS doctor, broadcaster, writer and comedian

Where to buy Outside The Box by Liz Rothschild