Reading’s End of Life Champions are encouraging people to break the taboo next week and engage with ‘The Big Conversation’ as part of Dying Matters Week.
Dying Matters Week (9-15 May) aims to raise public awareness about the importance of talking more openly about dying, death and bereavement and of planning ahead.
A Dying Matters survey in 2015 found that just 18 per cent of British adults say they have asked a family member about their end of life wishes. Only 7 per cent that they have written down their wishes or preferences about their future care and only 35 per cent of the public say they have written a will.
Although talking about dying may not be easy, it could be one of the most important conversations people will ever have. Many people have strong views about care and what happens after death, but if people don’t talk about their wishes these are unlikely to be met.
A group of End of Life Champions, that includes Reading Borough Council, local NHS partners and Sue Ryder, are currently driving a project to improve end of life care in the borough, through better integration, collaboration and communication.
The group are keen for people to start the conversation on dying and consider a checklist of five important things to think about:
- Legal and financial matters – look into writing a will;
- Organ donation - register your decision and let your loved ones know;
- End of life care - write an advance care plan and discuss wishes with your GP;
- How you would like to be remembered;
- Funeral plans - record your funeral wishes.
The group are also holding a Big Conversation afternoon event on Wednesday 8th June at St Laurence Church Friar Street, Reading, RG1 1DA from 1.30 to 4.30pm.
Cllr Rachel Eden, Reading’s Lead Member for Adult Social Care, hopes to break the taboo around the subject of dying. She said:
“The end of our story is an important part of our story and we have one chance to get it right. By championing end of life care, and promoting Dying Matters week, we hope to get this difficult, but necessary conversation started.
“None of us likes to think about dying, but not talking about it won’t make it go away – any more than talking about dying will make it happen sooner. Having the big conversation can help you to live well and to make the most of life until the very end. They key message is don’t leave it too late to plan ahead – and do tell those closest to you about your wishes.”
Dr Barbara Barrie, local GP, Berkshire West CCGs’ End of Life Lead and Thames Valley Strategic Clinical Network End of Life Lead has a wealth of experience of helping people to have conversations about their last wishes. She said: “Once people enter the last phase of their life, putting their affairs in order and talking about their wishes with those closest to them can bring peace of mind. Starting those conversations isn’t always easy, but I’m glad to support Dying Matters and encourage everyone to break the taboo: make your will, talk about your ‘bucket list’ of dreams, tell your friends and family about your wishes for the end of your life – why leave your most important journey to chance?”
Stewart Marks, Hospice Director for Sue Ryder – Duchess of Kent Hospice in Reading and Wokingham and Newbury Day Hospices, added: “We shouldn’t wait until we’re facing death to talk about the important things with the people we love the most. Things like whether we would like to be buried or cremated, whether we would like to be an organ donor or whether we would prefer to die at home.
“Across Sue Ryder hospices, in our care centres and out in the community, we help people to have these difficult, 'big conversations' every day and encourage people to talk openly about dying, death and bereavement. We sees first-hand the real value that planning ahead can offer to the whole family and thinking about how you would like to die and communicating your practical and personal wishes directly with your loved ones before you need to means that you can have more choice and control when the time comes."
To emphasise the importance of having the big conversation, the CCGs have produced a film, A Good Death – Molly’s Story, a moving account from Judy, talking about the final phase of her mother’s life and how important it was to talk about her mother’s wishes. Having these conversations meant that the right support was in place so that Molly got her final wish – to die in the family home. This can be viewed at https://www.youtube.com/watch?v=nSZLucUnMcI
It’s not too late to take part in an online survey, where the CCGs are asking people for their views to shape the future of NHS end of life and palliative care services. To take part, go to the Berkshire Health Network at www.healthnetwork-berkshire.nhs.uk/consult.ti and complete the survey before it closes on 26 May 2016.
If people have an interest in this area and would like to get involved in shaping the future of end of life care and support in Reading, or be regularly updated on the progress of the group, contact Jan Caulcutt on 0118 937 3358 or 07834 801338 or email
The steering group includes representatives from:
Reading Borough Council, Berkshire Clinical Commissioning Groups, GPs, Citizens Advise Bureau, Sue Ryder Duchess of Kent Hospice, the Alzheimer Society, Berkshire Health Foundation Trust, Royal Berkshire NHS Foundation Trust, Reading Voluntary Action, Cruse, local nursing care and funeral directors.
The group is working with the following key messages in mind:
- Break the Taboo: Encourage people to think ahead, share their preferences and talk openly about all aspects of dying.
- Achieve a ‘Good’ Death: Take a person-centred approach with the individual’s priorities guiding all decisions and actions.
- A Holistic Approach: Provide care through integrated working, with professional collaboration to ensure timely, seamless support through a single point of contact.
- Clear Communication: Take account of the circumstances, needs and abilities of the person and their carers, with clear and sensitive communication.
- Support for All: Value and understand everyone’s role, contribution and feelings, including support in bereavement.
- A good death - Molly's story is on Youtube: https://www.youtube.com/watch?v=nSZLucUnMcI
St Laurence’s Church Hall