Lucy Watts MBE

Lucy Watts MBE joins MyWishes

We are delighted to welcome Lucy Watts MBE to the MyWishes team.

Lucy is a prominent patient advocate, disability activist, consultant, speaker and social entrepreneur. She is committed to using her time, energy and skills to make an impact in society and to improve the lives of others. Lucy is an accomplished individual, providing her support to many causes, roles, projects and individuals and received an MBE at the age of 22 for her “services to young people with disabilities”. In 2019 she was voted the 9th most influential disabled person in Britain.

Lucy’s role as ‘head of lived experience’ will help ensure that MyWishes remains innovative, inclusive and a force for social change. Lucy has a huge amount of experience working with the NHS, campaigning and education.

 

Working with Lucy

Over the last few years we have worked closely with Lucy on different campaigns and participated in a range of projects together. Her drive for innovation and change mirrors that of the MyWishes team.

Lucy’s unique, lived experience as an educator, patient, advocate and campaigner will bring a new set of skills to the team previously missing and much needed.

An interview with Lucy Watts MBE

Hello Lucy and welcome once again to the MyWishes family.

Thanks, it is great to be part of the team and to contribute my experience, the lived experience perspective.

What do you hope to achieve at MyWishes?

As a user of MyWishes myself, I know the platform from first hand experience and can see how well the team have built the platform around the end user and made it an easy site to interact with. That said, I hope to be able to integrate important lived experience and lived experience data to the team. The term lived experience refers to personal knowledge and expertise obtained through first hand experiences within a specific area. By experiencing or living through experiences a detailed knowledge about subject matters, how something works, how it feels and how things can be improved is obtained. This knowledge can then be used at a later date to help improve the systems in which technology or other systems operate. Most people who work within the health and social care sector now recognise the benefit of co-production and involvement of people with lived experience.

The expertise I have gained will help MyWishes to better understand the end user, improve the user’s experience and help improve the support provided for all users. I will also help ensure that lived experience becomes a core part of MyWishes. We will develop the platform in a co-produced way enriched by the experiences of people who use this service – including those with disabilities, life-limiting illnesses, additional needs and people who are carers, as well as the wider public.

Who is your favourite artist, musician or band?

That’s a hard one — I don’t really subscribe to one individual/group, nor necessarily genre. I am a kind of person who likes a song if she likes a song, rather than because it is by a particular artist. That said, some of my favourites include Ed Sheeran, Jess Glynne, Sia, Clean Bandit (and of course their fantastic collaborators) and Coldplay.

If you could only have your laptop or your phone which one would you choose?

Laptop. I am surgically attached to my laptop, but can take or leave my phone.

A lot of your work empowers those who might feel disempowered. Your advocacy and empowerment work includes advising the WHO, creating standards for health bodies and addressing taboo subject matters… But who has empowered and inspired you?

There are a fair few people I have to credit for helping empower me, and I have some inspirations who have really helped me see light at the end of what was, at times, a very dark tunnel.

My family, especially my mother, grandparents, sister and my wider family, including a cousin who contracted meningitis as a teenager, losing both limbs below the knee and requiring a kidney transplant, amongst other things.

My mother is undoubtedly my biggest empowering and inspiring figure — I like to joke that my MBE’s alternative meaning is “Mother Behind Everything”. She just makes it possible. She’s supported and enabled me, believed in me, and I have the most fantastic relationship with her. I could not do what I do without her. Nearly losing her in 2015 just reaffirmed how much she is essential to my life and my ability to succeed.

My maternal grandparents have also been great figures in my life. They were quite ahead of their time in many ways, both having careers, my Grandmother becoming one of the very first nursing union reps when the NHS was formed, my Grandad being a teacher, and they spent years travelling the world as my Granddad was a teacher with the Army, meaning my mum grew up all over the Far East and Europe, so their stories always inspired me, and their love and support was crucial in my life. I love making my mum proud, but there was something special about sharing achievements with them both. Sadly, my Grandad died in 2015, and then Grandma in 2019. Their loss has had a tremendous impact on me. They’ve missed so many amazing things. My Grandad didn’t even live to see my MBE, which, I know for a fact, would’ve been the best day of his life — but, we can safely say he would not have abided by the embargo!

My former palliative care nurse, who got me started in my work — simply by asking me, for the first time, what I wanted to do — and who believed in me had an enormous impact.

I’ve had some incredible friends who have inspired me, some of whom are no longer with us, including the formidable palliative care activist, Mandy Paine MBE, who died earlier on this year.

And finally, I must credit my colleagues that I’ve worked with. People who have seen my potential, believed in me, given me opportunities in those early days, and impacted upon my life far beyond simply the work we collaborate on. Some have become as close as to be considered adopted family members.

In terms of inspired, all the above inspire me and a large number of others, but a few people who have inspired me include Baroness Jane Campbell [of Surbiton], Baroness Tanni Grey-Thompson, the late Stephen Hawking, the late Christopher Reeve and Sir Lee Pearson.

If you had a time machine and you could go back in time to the year 2010 what piece of advice would you give your younger self?

Believe in yourself — you have worth and you have a future.

What advise would you give to anyone who has just got finished their education and wants a career as an activist or educator?

If you are able to, and can afford to, volunteer. Volunteer in as many different sectors and doing as many different roles as you can. You don’t always know where your future lies until you try things on for size. Make sure you do something you have infinite passion for — that way, the work will never be ‘boring’ and you will never lose your enthusiasm for the role. There’s a lot of unseen, unheard, unrecognised and thankless work involved, so you have to be self-motivated, driven and persistent, but it is all worth it. Also — make sure you do it for the right reasons. Though some people seem surprised when I say this, your own story is not enough. Your story is a conduit, but it isn’t the whole picture or the whole story. You have to be a good communicator, a connector, a networker, you need to stay in touch with many groups of people, you have to understand policy, legislation and the wider picture, and you need to be able to locate your own lived experience in the context of what you are doing, but recognise that sometimes it isn’t right to even share your lived experience. Sometimes it just has to be completely about other people. Your advocacy isn’t about you — it’s about the community you are advocating for. You are just a conduit to bring attention to the issue, the lived experience and the stories of the community in question.


Digital Death Cafe

Remembering Jon Underwood, founder of Death Cafe

Jon Underwood founded a movement called Death Cafe. Death Cafe has had a significant, positive impact on how society thinks about and addresses death. Death Cafe has continued to grow in influence in the three years since Jon’s death and virtual death cafes now provide support to many during the COVID-19 pandemic.

Digital Death Cafe

Photo after ‘Death Cafe with Jon Underwood’ at our popup shop during Dying Matters Awareness Week 2013.

What is Death Cafe?

At a Death Cafe people, often strangers, gather to eat cake, drink tea and discuss death.

Our objective is ‘to increase awareness of death with a view to helping people make the most of their (finite) lives’.

A Death Cafe is a group directed discussion of death with no agenda, objectives or themes. It is a discussion group rather than a grief support or counselling session.

Our Death Cafes are always offered:

  • On a not for profit basis
  • In an accessible, respectful and confidential space
  • With no intention of leading people to any conclusion, product or course of action
  • Alongside refreshing drinks and nourishing food – and cake!

To learn more about Death Cafe click here.

Jon’s impact

Jon was a very calm and warm person. This was evident when he spoke to you as an individual or when he spoke at an event or in a Death Cafe. Death Cafe started to obtain international interest when I was developing an early version of MyWishes (previously called DeadSocial). I would regularly bump into Jon at charity events that we were attending as delegates or speaking at. He advised me on aspects of what we were developing and I would advise him on technical aspects of the Death Cafe website.

Jon facilitated a Death Cafe in our popup shop for Dying Matters Awareness Week 2013 and spoke at our first ever event. A video of Jon speaking at ‘Death, digital demise and our digital legacy’ can be watched below…. We gathered into a Camden co-working space and Jon got up and spoke to a a group (of mostly twenty-something year olds) about what Death Cafe is and why it exists. It was evident that his talk evoked thought and I remember continually hearing the word “Death Cafe” during the interval.

Jon’s legacy includes significantly advancing the acceptance and understanding of death. The ‘safe environment’ Death Cafe continues to provide across the globe has helped and inspired many thousands if not millions of people. If you have not attended a Death Cafe I strongly recommend that you do. I have found them moving, liberating, sad, shocking, funny and empowering.

Thank you for your time, your advice and your friendship. Thank you for the contribution you have made to better my own understanding of death. Thank you for quitting your job and starting the Death Cafe movement. What you achieved is remarkable.

Written by James Norris, the founder of MyWishes


Hello my name is advance care plan

Hello My Name Is…

Hello My Name Is...

Introduction

Hello My Name is …is a social movement that encourages doctors, nurses and those providing care to introduce themselves to patients and families before providing them information. It was thought of by Dr Kate Granger when she was a patient receiving care. Kate observed that “It made such a difference to how I was feeling about myself, it made me feel more human again”. Kate then reflected on her own practice and whether or not there had been times when she had not introduced herself to her patients. Using her experience as both a doctor and patient Kate wanted to improve care and “try to get healthcare professionals to think about the importance of introductions and aspire to do better”.

A logo was created and for the rest of her life Kate and her husband Chris worked tirelessly visiting professional organisations and speaking at conferences about the impact such a simple thing can have on patients.

Kate Granger

“I firmly believe it is not just about common courtesy, but it runs much deeper. Introductions are about making a human connection between one human being who is suffering and vulnerable, and another human being who wishes to help. They begin therapeutic relationships and can instantly build trust in difficult circumstances.”

– Dr Kate Granger

Kate’s legacy

For the remainder of Kate’ life she documented her experiences in a series of blog posts and memoirs. Kate used personification in her ‘Dear Cancer’ posts to highlight how she felt both about the cancer and her life and her condition.

Hello My Name Is legacy

Hello my name is… has become a global movement stretching across every continent across an array of different medical and non-medical settings. Kate was awarded an MBE for her services.

In conversation with Chris

We caught up with Chris Pointon to discuss ‘Hello my name is…” and highlight how we have integrated the campaign and ethos into MyWishes.

How can people get involved with “Hello my Name is…?

Everyone can get involved with the campaign and each time an introduction is made it’s making a difference to that interaction. Be it healthcare worker to patient or family member, or from colleague to colleague or just in everyday society…. it’s not just something that is healthcare relevant – it can be used in all walks of life….

What is your favourite ‘Hello My Name is…” story to date

One of my favourite stories is when I received a lovely message from a friend who was on holiday in Australia and had to visit a hospital in the Australian outback…. as they walked into the hospital there was a wall full of pictures of staff and the #hellomynameis logo above them with each member of staff introducing themselves and saying a little bit about them!!

We also now have the Kate Granger Building at the University of Surrey which is the new medical faculty in Guildford and ensures that Kate’s name will live on for many generations to come.

How does it feel knowing that your ongoing campaigning is still enhancing Kate’s reach, impact and legacy?

Overall I feel so proud that Kate’s campaign lives on across the world and is now almost 7 years old…. she will be smiling down knowing that the campaign continues to make a difference….

MyWishes and Hello my name is…

We decided to include Hello my name is… into MyWishes before it was launched. It is included in two ways.

Advance Care Plans.

One of the questions asked when documenting an advance care plan is “What name do you like to be called by?”

Once the advance care plan has been saved and downloaded the person’s preferred name is shown on the PDF or printed advance care plan as “hello my name is…” and the person’s preferred name.

Hello my name is advance care plan

When the advance care plan is read by a professional we hope that the “Hello my name is…” logo will act as a visual reminder that the professional should introduce themselves if they had not done so already. We also hope that they address the person by their preferred name.

Public MyWishes page.

Everyone on MyWishes has their own public page and unique URL. This can be customised (so that it is the same as your Facebook or Twitter handle) and set to ‘public’ or ‘private’. We again decided to include “hello my name is…” within this section.

Hello my name is in advance care plan

“Everyone can get involved with the campaign and each time an introduction is made it’s making a difference to that interaction. Be it healthcare worker to patient or family member, or from colleague to colleague or just in everyday society…. it’s not just something that is healthcare relevant – it can be used in all walks of life….” To learn more visit: www.hellomynameis.org.uk


Compassionate Communities - Covid-19 Tweet Chat

On Saturday morning a Tweet Chat was arranged bt Public Health Palliative Care International. It explored what Compassionate Communities looks like today and what will it look like in the months ahead.

 

About Compassionate Communities

The principles of compassionate communities are applicable to both end of life care and to healthcare in general. Networks of support of family, friends, neighbours and community members, are the foundation of what matters most to those undergoing experiences of death, dying, loss and care giving. This is as true for the person with the illness as it is for those who make up the caring network. These experiences are not the sole domain cared for by professional health and social care services. They are social and cultural, involving all of us and are part of our cultural heritages.

These same principles, when applied across populations, result in dramatic improvements to health and well being. Good disease management, the domain of professional health and social care services, focus on harm reduction. Health and well being are more related to what matters most in life; the people we know and love in the places we know and love. Compassionate communities are programmes which work in this social ecology of care. The Compassionate City Charter is a set of 13 principles which cover the civic aspect of our lives, how we can become engaged in compassionate activities in the workplace, churches and temples, our state institutions, our media, our educational institutions amongst others.

 

Twitter chat

The three questions used to evoke thought and discussion were:

  1. Advance care planning (ACP) needs are clearly high at the moment with so many people unwell and being admitted to ICU and also people in palliative care needing to be discharged to home or visitors being limited.
  2. There have been some tensions about end of life planning though. In some countries people have been told by leaders to not start DNR conversations.What is the role of ACP now?  Does Compassionate Communities have a unique contribution to the way we do ACP now?
  3. What can we do next? How can we support each other? What can @PHPalCare do to support you, your communities and your services?

 

Links to resources shared

Below are links to a number of the core resources shared during the Tweet Chat

 

Images resources shared

Click on the images to view them in full.

 

Outcome

There was a number of lively conversations and threads that addressed areas ranging from digitising services and changing the ways in which support is provided to updating terminologies and methodologies.

Next Steps

  • Apply learning into Compassionate Community projects, methodologies and frameworks.
  • Disseminate information shared.
  • Await future Compassionate Community Twitter Chats using the hashtag #ComComCovid on Twitter.


MyWishes Launch - Press Release

The Problem

Most people have not stated what they would like to happen should they die or lose capacity to look after themselves. They have not made plans for their estate or for their loved ones. Death is confusing and until now there has been no immediate benefit or reward for someone documenting and sharing their wishes with both professionals and those they care about.

The Solution

MyWishes breaks down the smoke and mirrors around end of life planning and provides free tools that encourage society to address both their physical and digital lives.

MyWishes utilises ’generation me’ and ‘gamification’ to provide immediate benefits and rewards. MyWishes hopes that this unique approach to end of life planning will change conversations and behaviours around estate ownership, digital legacy and advance care planning.

MyWishes Software

MyWishes users document details and preferences for their estate, healthcare, social care, digital legacy and funeral. These are then downloaded and shared (with a friend, family member, GP, Carer Solicitor etc). Users can publish their funeral playlist and bucket list before onto their public MyWishes page and release a series of goodbye messages for their loved ones after their death.

Some of the features include:

Once a user has registered and logged in, video tutorials provide support and guidance in each section. The MyWishes suite of features include:

Footnotes

Research and Development

MyWishes was developed with guidance, feedback and direction provided by members of NHS England, The Law Society, Hospice UK and an array of technology companies.

“By incorporating aspects of mainstream culture, such as gamification and mindfulness we hope to make end of life planning and self-care normal, sensible and mainstream”. - James Norris, Founder MyWishes

MyWishes was piloted with a number of hospices, charities and user groups across England. Due to today’s challenging circumstances, MyWishes has made the decision to make the software available to all, for free from today.

Further details

To publish and share this information

 

Register for an account and document your wishes for free at www.MyWishes.co.uk


NHS Corona

£10 donation provided to the NHS for every in-application solicitor referral

Donating to the NHS

We are living in uncertain times. One thing that is certain is that we need to support our dedicated friends, family and members of our community fighting against COVID-19. In the UK we have the amazing National Health Service (the NHS) helping us combat the spread and save the lives of those most negatively affected by the virus.

Until further notice MyWishes will donate £10 for each Last Will & Testament completed with one of our trusted solicitors to the NHS. This will help with the national effort to provide health boards with a little extra funding during this critical time.

 

Not checked by a solicitor
Checked by a solicitor, video consultation and documentation completion
Individual
Individual
Couple
Basic will
Straightforward will without the need for complex estate planning; appoints executors and guardians, deals with simple legacies and distribute estate. No trust structures incorporated into the will.
£0
£150
£250
Complex will
Complex will may require tax planning building on the above service incorporating trusts (discretionary, or otherwise), address complex relationships, dealing with simple business and/ or agricultural assets.
£0
£250
£300

About our partner solicitors

MyWishes and all it's features are free to use. This includes the will writing tool.

A number of experienced, fully qualified and insured solicitors in England and Wales have agreed to support MyWishes users at a fixed fee. The fee is either £150 or £250 for an individual person and dependent on whether your Last Will & Testament is simple or complex. Once you have written you will on MyWishes you can download, print or share the document. They are able to provide completed and fully insured wills at this fixed price once a MyWishes user has spent time writing their will using MyWishes, unique and free to use will writing tool.

 

Last Will & Testament Download

 

Once completed users share the document with a solicitor using the share button as shown above. Alternatively they can download or print the document before providing it to an external solicitor. When a user shares the document using MyWishes the solicitor will call or video call you using Skype, Google, Hangouts, Zoom or using the phone number you provide.

 

 

It will be fully reviewed and alterations made when it is suitable to do so. A few hours later the solicitor will send the completed Last Will & Testament to you. To complete the process and to make the document legally binding it will need to be signed and counter signed by two witnesses who are not beneficiaries of your estate as outlined within the documentation .

Upon completion a £10 donation will be paid to the NHS by MyWishes. If you would like to allocate your own money to a charity or a good cause within you Last Will & Testament this can be done within the Last Will & Testament's 'Charity Giving' section.

 

Register for MyWishesFurther details about our will writing software can be viewed here.

 


BTV digital legacy

Bulgarian TV feature - MyWishes were recently featured on the BTV News

BTV digital legacy

A film crew from Bulgaria recently flew over to London to learn about MyWishes, our goals and our mission. The feature was aired on the national TV station BTV. Here is a short snippet from the BTV evening news.

To learn more about MyWishes and how it works click here.


Marie Curie

MyWishes included in Marie Curie's 'Thinking about your care and wishes ahead of time'

Marie CurieMarie Curie's 'Thinking about your care and wishes ahead of time' is for people living with a terminal illness, and their friends and families. It includes lots of information about planning for death ranging from the importance of an advance care plan to rehoming your pet. It has been written for all those who live within the UK and includes specific information for when differing approaches are required for those living within England, Wales, Scotland and Northern Ireland.

The resource is free to access and download from https://www.mariecurie.org.uk/help/support/terminal-illness/planning-ahead/social-media-online-accounts.