Carole Clark Ageing Well Officer Leeds City Council
Chris Stothard End of Life Nurse Specialist Leeds Teaching Hospitals Trust
Background
• National data indicates that in the UK:
– Death and dying are not talked about – People are not prepared – People are not dying in their place of choice – Professionals are not raising the issue
• The Health Needs Assessment (HNA) for End of Life Care for Adults in Leeds (2013) highlighted the need for a citywide Dying Matters public education campaign.
• The council were asked to lead a campaign with funding provided by the NHS (three CCGS) via the Palliative Care Strategy Group;
Leeds Dying Matters Partnership
How did we get here?
Started in 2015 with funding provided by the NHS via the Palliative Care Strategy Group. Led by public health (Leeds City Council)
2016 campaign – runner up in the NCPC award for best Dying Matters Awareness Initiative of the Year
2017 campaign - won three awards: • Dying Matters Awareness Initiative of the Year (NCPC) • Best Collaboration (Comms 2point0 unawards) • Collaborative Working (LTHT Time to Shine Awards)
Leeds Dying Matters Partnership
NHS Leeds City Council Clinical Commissioning Group Adults and Health Leeds Teaching Hospital Museums & Galleries Trust Libraries Leeds Community Healthcare Arts & Culture MESMAC Communications Housing St Gemma’s University Hospice Sue Ryder of Leeds Wheatfields Touchstone Hospice Chapel FM Leeds Angel of Bereavement The Grief Youths Gooding Forum Series Funeral Martin Services House Thackray Irish Hospice Medical Health Leeds Black Museum and Health Full Circle Homes Initiative Leeds Older Funerals People’s Forum 2015
• Dying Matters Week 18th – 22nd May • Adopted the 2015 theme for the National Dying Matters Campaign - Talk, Plan, Live • Pulled together a calendar of events • Survey and focus groups to find out more about people’s attitudes to planning for end of life in Leeds • Finalist in National Council for Palliative Care awards
2016
• Dying Matters Week 9th – 13th May • Event at Leeds City Museum, 10th May • Marketing campaign for Leeds • Calendar of events throughout the year included death cafes, lunchtime talks, film screenings, and advice sessions • Social media campaign • Winner in the National Council for Palliative Care awards
@AgeFriendlyLDS #dyingmattersLDS @BetterLivesLDS 2017
Dying Matters Week 8th – 12th May
National theme: What can you do?
• For yourself • For you family • For your friends • For you community
2017 Dying Matters week
2017
‘Where there is tea there is hope’ Day of the Dead Death Cafes run by Leeds Tiled Hall Café Bereavement Forum, in partnership with Leeds Libraries
9 - 11 May Kirkstall Abbey The Unfair the fourth in a series of seven projects by Leeds-based artist and performance maker, Ellie Harrison.
2017 – Dying Matters exhibition, Leeds City Museum
What contributes to our success
• Locally owned cross sector partnership • Positive engagement from public and professionals • Funding from CCG partnership • Bespoke, insight led campaign • Supported by national bodies • Creativity and Innovation Measuring Success
Public consultation over the past three years ‘I am happy with my family’s 2083 responses to questionnaire awareness of my ‘I am too wishes’ young to Overall findings: think about it’ • 60% of respondents have made a will; ‘I feel • 50% of respondents have registered as an organ donor; superstitious about discussing • 40% have discussed what they would like to happen when it comes to my death’ their end of life wishes; • 35% have discussed with their family/friends what their end of life wishes are.
‘I am an organ donor ‘I have and I would be very planned my ‘Making sure that upset if my organs funeral and any pets I own will where wasted as I have paid for it’ be cared for as made my wishes very stated in my will’ clear’
Public Consultation
Conclusions
• People want impartial information • Information should be easily available in community settings • More training for professionals to help them talk about death and dying • Respect cultural differences • Information and advice for BME communities
‘People believe that knowing someone’s preferences, and therefore being able to execute their dying wishes, is considered a final act of love for that person, and feels like a fitting final way to demonstrate how much they cared about them’. (Focus group participant)
2018 Small grants programme. Organisations can apply for up to £200 to run a Dying Matters event during Dying Matters week.
Dying Matters event during Dying Matters week at Leeds Kirkgate Market.
Training for front line professionals and volunteers on how to have conversations about end of life.
Conference on Dying in twentieth century – University of Leeds bringing together artists, academics and professionals working in a range of services relating to end of life [email protected] Any Questions?