Last week, Esther Nimmo, the Training Lead for the Age UK partners in the North, attended the National Council for Palliative Care’s conference in London. She tells us more below.
The NCPC’s conference, called New Ambitions for End of Life Care, was a great opportunity for me to meet delegates from other end of life care and rights projects and to spread the word about our new service, My Life My Decision.
As Training Lead North, for the My Life My Decision project, my role is to support the Project Co-ordinators based at our Age UK partners in Trafford, Lancashire, South Lakes and South Tyneside. I shared with the delegates who visited the CiD stand how My Life My Decision offers awareness raising, training and one-to-one independent advocacy support for people considering and completing an Advance Decision to Refuse Treatment or a Lasting Power of Attorney for Health and Welfare.
Through these discussions I found many people recognised the need to offer independent advocacy support: someone to sit with and give time to those needing to think through to the complex issues surrounding the details of planning ahead. It’s not easy trying to imagine a time when through lack of capacity, you are no longer able to make both serious and everyday decisions about your own health or welfare options. It is hard to envisage that this will ever happen and so it’s not an easy topic to raise.
Simon Chapman’s presentation: Does anybody want to talk about it? was a highlight of the conference for me. Simon, the Director of Public & Parliamentary Engagement for the NCPC and Dying Matters, spoke inspiringly about the need to start talking about death and dying at a community, and not just a professional or medical, level. He quoted a 2011 poll which demonstrated how important end of life issues are to us compared to other worries: our fear of pain (83%); of dying alone (67%); of being told we are dying (62%) compared to our fear of losing our job ((38%). And yet, despite our concerns, 23% of people who are 75+ have not discussed their end of life wishes in any detail. The conference went on to explore how we might ‘nudge’ individuals and communities to start to talk about death. Kate Nightingale, Head of Communications at Time to Change (the ‘1-in-4’ mental health anti-stigma campaign) drew clear parallels with the success of their ‘taboo’ campaign and inspired the delegates by encouraging us to see change in terms of a journey where a long term vision is needed.
As we prepare for the launch of My Life My Decision on 27th November, I was encouraged to see so many people committed to raising awareness and encouraging debate around end of life, or rather living well until we don’t (as one delegate put it) issues. Each organisation is working in their own way, with their own focus but the shared passion and compassion demonstrated at the conference is a great ambition to put into action: making the best impact by continuing to work together.
I returned to our office with a list of people wanting an advocacy support project in their area and a refreshed vision that My Life My Decision is timely and meeting real need to support people in overcoming the barriers to exercising their rights and enable them to live well until they don’t.