Byw Nawr: Live now... but plan for the inevitable!
Dr Hywel Francis MP, pictured below, is to Chair Byw Nawr (Live Now) – Dying Matters in Wales. Here, he shares his reasons for getting involved, reminds us why this work is so important, and invites you to join him in helping people in Wales have their end of life wishes met.
People are the same the world over. We all have our personal dreams, hopes, wishes and aspirations in life. When asked to share their thoughts on how they would like the end of life to be, many would say, ‘peacefully at home surrounded by family at the age of 99’ or others may say, ‘with my boots on in the throes of life'. What is certain is that most of us want it to be the best way for ourselves and those we love. Yet when posed with the questions: how much preparation have you made to ensure your house is in order? Have you passed on treasured memories? Have you made your wishes known to those who will be dealing with your affairs after you’ve gone or are no longer able to make decisions for yourself? How many of us can say ‘All sorted’?
A survey conducted in 2014 by the Dying Matters Coalition found that:
- 83% of the public believe people in Britain are uncomfortable discussing dying and death.
- More than half of the public (51%) who have a partner say they are unaware of their end of life wishes.
So, when the Minister of Health and Social Services Mark Drakeford asked me to Chair Byw Nawr (Live Now) in Wales, in association with Dying Matters, I did ask myself: what can I contribute to this difficult subject? Well, my own personal experience is of caring, with Mair my wife, for our son, Sam, who lived with a life limiting condition. Nothing prepared us for the sorrow of losing him. Yet the process of losing Sam and our subsequent grieving has been made easier by continuing to share with family and friends, both new and old, experiences that we knew Sam loved and made his life whole.
In establishing the All Party Parliamentary Group for Carers and as Vice president of Carers UK (the ‘Unsung Heroes’ of our society today), I have listened to Carers throughout the UK and seen first hand how when people are prepared and know in advance what plans are in place, they cope better with the situations in front of them.
A Dying Matters coalition survey in 2014 found that people in Wales prepare less than other parts of the UK. Just:
29% of people say they have made a will
28% have let someone know their funeral wishes
2% have written down wishes or preferences about the care they would want (the lowest in Britain)
16% have talked to someone about their own wishes
33% are on the Organ Donor Register
Byw Nawr will ask people in Wales to sign up to our volunteer database, encouraging communities to engage in conversations and activities that promote a healthy and realistic attitude to death and dying, planning in advance and leaving legacies for those left behind. From committing to making a will, discussing how you want to be cared for at the end of life, to communities sharing stories and memories with your children and grandchildren, we want people in Wales to feel comfortable talking about dying.
To support this, we will be promoting five simple steps to working towards planning and preparing:
1. Make a will
Will making is important if you care what happens to your property after you die, particularly if you are neither married nor in a civil partnership. The law does not recognise cohabitants as having the same rights as spouses and civil partners.
2. Tell your loved ones your wishes
Cicely Saunders (1918-2005) reminded us that ‘How people die remains in the memory of those who live on’. Yet sometimes, through trauma or sudden illness, death occurs without time to say goodbye, plan or prepare. Knowing that we have made public our wishes and shared precious memories in advance when we are fit and well will support those left behind as they go through the bereavement process. They will be consoled knowing that having already had those conversations they were not unprepared when the time came.
3. Register as an organ donor
The Welsh Government Organ Donation Team state that someone dies every ten days waiting for an organ transplant in Wales. While 90% of us support organ donation, not enough of us have told our loved ones whether we want to be a donor or not. Every missed chance for someone to become an organ donor is a tragedy. Find out more at: http://www.organdonationwales.org/
From 1 December 2015 organ donation will be easier in Wales. Even with this change it is still important that you tell your friends and family about your wishes, as under the new system your loved ones will still be asked if they knew your decision on organ donation.
4. Record your funeral wishes
Documenting your funeral wishes is an opportunity to ensure the funeral reflects you as an individual. Grieving relatives can also gain comfort from knowing that they will be taking practical steps to give you the funeral you desired.
5. Plan your future care and support
People who are coming to the end of their lives often acknowledge the value of friends and professionals in just being there, offering practical support and a listening ear, and supporting them to make important choices, such as how and where to be cared for. The ‘Find me Help’ section of the Dying Matters website offers links to local services, information and supportive online communities.
Bilingual versions of the ‘Find me Help’ directory for people in the last years of life in Wales are currently in development.
Anyone who wants to know more about the work of Byw Nawr, or who is providing services to people in the last years of life, their family, carers or friends, can email: firstname.lastname@example.org
The message I want to send out today is that if life’s lessons have taught me anything, it is to be prepared, plan for the inevitable, but above all to embrace life and live it well and to the full, with the knowledge that you have prepared as well as you can for whatever life throws at you. Sign up today and let’s begin that big conversation.
Dr Hywel Francis MP
Chair, Byw Nawr (Live Now) – Dying Matters in Wales