Memento Mori Disco
Memento Mori Disco
Memento Mori Disco is an evening party for Palliative Care Congress 2023 attendees.
The Palliative Care Congress 2023 is taking place between the 16th-17th March. Once the first day of the conference has wrapped up, an evening party will take place from 7pm-11pm at the Festival Pub (2 minute walk from the EICC). It will be an informal opportunity for conversations, networking and friendship making to take place.
Music Policy
Palliative Care DJs will be playing music by deceased artists throughout the evening. The music will be chosen be chosen by attendees. Slow songs will be played at the start and the more uptempo songs towards the end.
Request a song using the form below...
Request a song form
Artists already added to the DJs Memento Mori roster range from David Bowie and Queen to Johnny Rotten and 2Pac Shakur. The songs played will celebrate the music and legacy of a diverse and eclectic mix of musicians who have had an impact on the lives of palliative care professionals attending this year’s Congress.
Palliative Care DJs…we need you!
If you work within palliative care, are attending this year’s Congress and also DJ, please get in touch. We would love for you to join other palliative care DJs and perform (we can accommodate whichever setup and controller you are familiar with).
Get in touch by clicking here
Reserve a free ticket now
The party is free to attend but please reserve a ticket in advance for accreditation and entry. The capacity of the venue is 150 people and food will be served until 10pm. If you plan to eat and it’s very busy when you arrive, you might want to eat somewhere else nearby. There isn’t a dress code so conference attire or casual clothing are both fine.
Drink donation / sponsors
This is a not for profit event and is free to attend. If your company or the company you work for would like to buy attendees a few drinks please use the form below. We have capped the bar tab at £1000. If this amount is reached no further sponsors will be able to contribute.
100% of donations will go behind the bar for attendees. Sponsor(s) will receive “thank you” shout outs from the palliative care DJs and the thanks of those attending. The recommended sponsorship amount is £300 – £600. If you are able to provide attendees with drinks, get in touch: https://www.mywishes.co.uk/contact-usget in touch:
About The Palliative Care Congress 2023
The Association for Palliative Medicine of Great Britain and Ireland (APM) hosts the Palliative Care Congress in a different city each year. It attracts over 500 delegates from around the world from a diverse multidisciplinary background. In 2023 the PCC will be bringing Congress to the Edinburgh International Conference Centre (EICC) in Scotland.
To view the full programme click here
MyWishes at PCC 2023
Members of the MyWishes team will be attending and participating in PCC 2023. On Friday James Norris from MyWishes and Professor Mark Taubert a palliative medicine hospital consultant and clinical director at Velindre University NHS Trust will deliver the morning plenary titled ‘Utilising Technology within end-of-life care’.
MyWishes will also be hosting the Memento Mori Disco (as outlined above).
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 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
Newham Council provides MyWishes for residents
Future health, social care and end of life planning in Newham
Newham residents will benefit from advice and support on ‘End of Life’ planning, thanks to the launch of the Council’s new MyWishes online platform.
MyWishes, commissioned by the Council and tested with residents, can be used to document and share future care and ‘end of life’ choices. The aim is to ensure wishes are understood and followed should a resident lose capacity to make decisions or communicate them. Planning in advance is the best way to help reduce the administrative confusion and stress experienced by loved ones after a death.
"Death remains a taboo subject in society, meaning that many people are uncomfortable with or unsure about discussing what will happen with their affairs after they pass.
This platform will make it far easier for Newham residents to make plans in advance and will relieve much of the stress and difficulty faced by loved ones following a bereavement.”
— Neil Wilson, Cabinet Member for Health and Adult Social Care & Newham Counciler
Empowering residents
MyWishes empowers residents to make ‘Advance Care Plans’ for their health and social care preferences. It also enables residents to document what they would like to happen with their physical property and their digital content (sometimes referred to as ‘digital assets’).
Other features include documenting funeral wishes, writing or recording a self-authored obituary, making plans and leaving goodbye messages to family and friends to be published after death.
After tasks have been completed residents can download and print their documents at home. They can also be emailed to loved ones, there GP and anyone who might be involved with their care in the future. The platform is free and has been adapted to better support residents. It has the support of a number of key local charities operating across Newham.
Documents created are downloaded in an accessible and printable PDF format
Making plans in Newham
Registering for a free account
Newham residents can document and share their future wishes by registering for a free account. To do so visit https://app.mywishes.co.uk/register. Once you have registered you will receive a confirmation email from MyWishes with a confirmation link contained within it. Clicking on this link will authenticate your account and email credentials. You will now be able to login to MyWishes using the email and password credentials provided. Please finish setting up your account once registered and enter your postcode. You will now have access to all of the future planning services on MyWishes and no costs will be incurred when using the service.
Receiving support and sharing your wishes
After you have created a document (for example your advance care plan, last will and testament, funeral wishes or your digital will (for your online accounts) download and share the document. Some documents should be signed and witnessed offline. Some documents do not require a signature. An instruction video is provided for each service and further instructions are provided with each document once downloaded or printed.
You might want to share documents with your GP, anyone who might be involved with your care in the future and a friend or family member. We recommend that you also keep a ‘hard copy’ in your home and that you talk about your wishes with at least one person who you trust and your GP should you wish to do so. A number of charities in Newham can be contacted for support when documenting your Advance Care Plan. To view the list of support charities click on the ‘Get Support ACP’ button.
To accompany the platform, the Council has co-designed a Planning Ahead leaflet supporting residents to better understand the options available to them to plan ahead for their future care and for after their death. This is something all of us can do – it is never too early – you do not need to wait until you are unwell or over a certain age.
Editors – Press Release
To download Newham Council’s Press Release and the assets shown for use in publications, websites and blogs please click here
MyWishes free to use software 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.
Other news that might be of interest
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
MyWishes free to use software 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.
Sharing is caring…
The Masterclass in Palliative Care
Introduction
James Norris the founder of MyWishes was invited to attend and participate in an intensive, week long palliative care masterclass. By attending, James hoped to develop his leadership skills and obtain insights into high quality, end of life care services operating across different regions. The following article is an opinion piece written by James about his experiences of the masterclass.
About the Masterclass
The masterclass in Palliative Care took place between 14 November – 18 November 2022 in Kozhikode, Kerala, India. The Masterclass was an advanced interactive learning program in palliative care. The program involved group discussions and faculty-led interactive sessions on the philosophy and practice of palliative care, initiation of supporting platforms and exposure to grassroots-level initiatives in palliative care.
The theme of the program was “Being prepared to lead change”.
Prior to the masterclass I undertook the award winning, ‘Fellowship in Palliative Care‘ programme’. This was developed and delivered by the Institute of Palliative Medicine in Kerala, St Christopher’s Hospice in London, Sanjeevan Palliative Care Project in Pondicherry and the Bangabandhu Sheikh Mujib Medical University in Dhaka. The Fellowship in Palliative Care is a six month programme delivered virtually. The masterclass was a continuation of this learning and conducted at the request of the World Health Organisation (WHO). As part of the masterclass, attendees also contributed to WHO palliative care policy documentation for the South East Asian region.
What happened Masterclass programme schedule
Sessions started at 7:30am and concluded at 7:30pm. There was a strong focus throughout the programme on self-reflection, personal and institutional development. About 60 or so palliative care professionals participated. Some of the sessions were attended by all, others were delivered to better aid the personal development within three specialist fields (doctors, nurses and other palliative care professionals). Further information about the sessions and the full programme can be downloaded (word doc) by clicking here.
With the exception of visiting medical institutes and making visits to people within the local community, everything took place within our newly claimed home. We worked, slept and ate onsite. This along with the intensity of the programme, the duration and the quality of the sessions harnessed a hugely productive educational experience. I slept in one of the ‘male dorms’ with 10 or so other fellows.
We woke up together and had broken conversations whilst we brushed our teeth. We ate breakfast, lunch and dinner side by side. Instead of forging business connections, friendships were made. It was clear that all those attending were passionate about delivering care and improving health ecosystems within our own places of work and counties of residence.
Kerala is the birthplace of ‘Compassionate Communities’. Compassionate Communities is built on a combined ethos of a public health approach to palliative and end of life care and community. ‘Compassion’ was one of the key themes that was explored at a structural and personal level throughout the week.
MyWishes is supporting a recently launched ‘Compassionate Hillingdon’ programme in North West London. This programme is heavily influenced by the Compassionate Communities movement. A number of lessons learned from the masterclass will feed into the future development of the Compassionate Hillingdon programme in the months and years ahead.
The masterclass was the most enjoyable and worthwhile palliative care educational programme I have ever experienced. Working and collaborating alongside others passionate about hospice and palliative care in such an environment has led to friendships and plans for future collaboration that otherwise would not have been possible. Further plans to meet-up with those on the masterclass and invitations to stay in each other’s homes have been both offered and also received.
The feelings that I am now left with about the Masterclass mirrors those of attending Glastonbury festivals. This obscure connection between the two is due to the togetherness, intensity and community created during a relatively short period of time.
Thank you
I would like to thank Dr Suresh Kumar, Professor Heather Richardson, Dr Libby Sallnow, Priyatha Ponnappan, Marie Cooper, Saif Mohammed, Ilyas, the rest of the team, volunteers and all of the fellow masterclass participants for such a memorable and worthwhile experience.
I am certain that the wider, societal and developmental impact of the masterclass in the years to come will be hugely positive and of significance.
The Masterclass in Palliative Care was a masterclass!
About the Author
James Norris is the founder of the MyWishes and the Digital Legacy Association. He also holds a post as a digital research fellow at Michael Sobell Hospice.
As part of James’ work he researches and develops end of life technologies, apps and websites. He organises the annual Digital Legacy Conference and publishes regular tutorials helping to empower both professionals and the general public in areas relating to death and technology.
Document your wishes
MyWishes free to use software 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.
Other news that might be of interest
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
MyWishes free to use software was developed under the guidance of healthcare, hospice, legal and funeral professionals. Our platform empower society to make plans for both themselves and those they care about.
MyWishes accepted onto the West Midlands AHSN's Accelerator programme
WMAHSN Serendip & Accelerator Programme 2022/23.
Overview
We are kickstarting 2023 with some big news… MyWishes are now part of the West Midlands Academic Health Science Network’s (WMAHSN) Serendip & Accelerator Programme 2022/23.
WMAHSN is one of the 15 Academic Health Science Network’s operating across the UK. AHSNs were set up by NHS England in 2013 to operate as the key innovation arm of the NHS.
The 2022/23 health and social care programme will focus on: Transformative Innovation Technology for the Health & Social Care Sector. How can these Digital Tools make better use of data in: Digital Technologies & Data Processing.
What’s next?
Over a 12 month period we will be supported in a number of ways by the WMAHSN team and wider network across the Midlands.
We look forward to building stronger relationships across the West Midlands and improving our offering to all of our users in 2023. The sessions provided in January include a Health Economic training session on the 17th January and a 1:1 benchmarking session.
We would like to say a big “THANK YOU” to WMAHSN for accepting our application.
To learn more about the programme visit: https://bruntwood.co.uk/scitech/business-support/programmes/wmahsn/
Recent news from the MyWishes team...
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
MyWishes free to use software was developed under the guidance of healthcare, hospice, legal and funeral professionals. Our platform empowers society to think about what matters to most and create documents for for their future care, their possessions and those they care about.
Upcoming talks and conferences
Upcoming talks and conferences that we are participating in...
We will be sharing experiences and running training workshops at a number of congresses, conferences and events in 2023. The main conferences and congresses booked in for 2023 can be found below. If your organisation or conference would like us to add a contribution to your own conference, congress or event, please do get in touch.
Interfacing The Future 2023: Blurring The Divide, The Barbican London
ITF’s theme, ‘Blurring the Divide’ is derived from the blurring divide between a technological experience and the human experience. Speakers include James Norris - Founder, MyWishes, Tom Mason - CTO, Stability AI, Roushanak Rahmat - AI Research Scientist, Elekta and Sameer Shirgaonkar - Executive Director, Experience & Service Design, J.P. Morgan.
18th January, 14:00 – 17:30 GMT at The Barbican, London
Palliative Care Congress 2023
The Association for Palliative Medicine of Great Britain and Ireland (APM) host the Palliative Care Congress on an annual basis. PCC events attract over 500 delegates from around the world
16th-18th March at the EICC, Edinburgh
Oxford Centre for Education & Research in Palliative Care
The Oxford Centre for Education & Research in Palliative Care (OxCERPC) will be hosting a study day focusing on ''Contemporary Issues Surrounding Death & Grieving'. Our training will focus on 'Contemporary Issue of Death & Grief in the Digital Age and What do Health and Social Care Professionals need to be aware in relation to digital legacy'
28th April (Virtual). More information will be published in due course
ACP-i 2023: 8th International Conference on Advance Care Planning
The ACP-i Conference, spearheaded by the ACP-i Society, is held once every two years to bring together an international fraternity of ACP experts to share best practices on ACP. The ACP-i 2023 Conference in Singapore is the first international ACP conference to be hosted in Asia.
24th-27th May 2023, Singapore
We will also be running a number of training courses for hospices, palliative care associations, patient groups and professionals in 2023. Subject matters range from community empowerment to professional development in areas relating to advance care planning, digital legacy safeguarding and innovation. If your organisation or conference would like us to add a contribution to your own conference, congress or event, please do get in touch.
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 platform empowers society to think about what matters to most and create documents for for their future care, their possessions 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
7th International African Palliative Care Conference
APCA Conference
We are delighted to announce that we will be participating in the 7th International African Palliative Care Conference co-hosted by the African Palliative Care Association (APCA) and the Worldwide Hospice Palliative Care Alliance (WHPCA). It is co-sponsored by the IAHPC, ICPCN, Global Partners in Care and PallCHASE.
The conference will be a hybrid (physical and virtual) event that will take place from 24-26 August 2022. The virtual activities will be run on an online platform that will be accessible to all registered delegates while the physical sessions will happen in Kampala, Uganda.
The conference theme, Palliative Care in a Pandemic, reflects both the current reality of palliative care provision on the continent, the experiences of patients and providers over the last 2 years and the projected risks of emerging infectious diseases in Africa in the future.
James (the founder of MyWishes) will be speaking about areas relating to technology, end of life planning and bereavement .
He will be participating in a pre-conference, Digital Health workshop on the 23rd August. The title for this talk is ‘The importance of planning for death digitally and grieving online‘. This paper will explore the impact modern day communication technologies on society and how professionals can provide person-centred care based on the devices and services someone uses.
On the 25th August, James will explore how compassion can be integrated into communities by utilising digital technologies. It will draw upon work designed and delivered by both MyWishes and other ‘tech for good’ organisations. The conference programme can be found here
Other events we are involved with…
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…
Plan Ahead Event - Canning Town Library
Plan Ahead Event – Canning Town Library
18 Rathbone Market E16 1EH on Wed 20th July 2022 10am-3pm .
MyWishes will be participating in the upcoming ‘Plan Ahead’ event. It is taking place in Canning Town Library and feature a number of organisation’s supporting residents across the Newham borough. If those attending would like to meet someone from MyWishes please say “hello”. Tom from MyWishes will also be providing live demos of our platform for those wanting to learn more.
Interesting and thought provoking conversations will be provided from the following organisations:
- Health Outreach Service
- Adults and Health – Day Opportunities Enterprise
- Newham Dementia Service – New Deal Partnership
- Adult Social Care – Operations
- Newham Telecare & Wheelchair Service
- Extended Primary Care Team, Rapid Response, Integrated Discharge Hub (IDH) and Telehealth Services.
- Independent Living
- MyWishes
- Stratford Health Centre – Social Prescribers
- West Ham United
- Adults Commissioning
- Compassion in Dying
- Community Link Workers
- Weight Management service
- Mental Health Commissioning
- Stop Smoking Service
- Newham Bereavement Service
- LGBTQ Group
- Carers First
*Refreshments will be provided throughout the day
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.
Other event news that might be of interest
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 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:
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Making a will
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Advanced Care Planning
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Lasting Power of Attorney
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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
Other talks and events we are supporting...
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…
ESCTOX / UKASCC Conference
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
“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
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…
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)
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