International Day of People with Disabilities - Spotlight on Postural Care Planning
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
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.
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
- For all enquires click here
- To learn how MyWishes works click here
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.
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.
- Mindfulness (login required)
- Design your own Coat of Arms
- How to plan for death digitally
- Dealing with Grief in today’s World
- How to create a Bucket List on MyWishes (and the top 5 regrets of the dying)
- Why you should have an Advance Care Plan
- How to create an ethical will
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
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.
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…
Speaking at the 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.
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
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.
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
- For all enquires click here
- To learn how MyWishes works click here
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
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.
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
- For all enquires click here
- To learn how MyWishes works click here
Sharing is caring…
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.
Other news that might be of interest
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.
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
- For all enquires click here
- To learn how MyWishes works click here
Sharing is caring…
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.
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
Nothing found.
Other news that might be of interest
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.
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
- For all enquires click here
- To learn how MyWishes works click here
Sharing is caring…
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.
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
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.
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
- For all enquires click here
- To learn how MyWishes works click here
Join the conversation…
COVID-19: New guidance for managing a funeral or commemorative event
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
- How to arrange and video stream a funeral on Facebook during the COVID-19 pandemic
- How to plan for death during the COVID-19 pandemic
- Video calling software can now be used when witnessing Last Will & Testament’s
- How COVID-19 is changing funerals
- To download these guidelines (PDF) click here
- Further details can be found in the gov.uk website
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
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.
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
- For all enquires click here
- To learn how MyWishes works click here
What we are talking about…
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’.
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.
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.
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
- For all enquires click here
- To learn how MyWishes works click here
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.