Key Learning from Dying Matters Activities & Awareness Week Small Actions- Big Difference Eve Richardson

THE DYING MATTERS COALITION Set up by the National Council for Palliative Care, the umbrella Charity for all those involved in palliative and end of life care, to support the 2008 End of Life Care Strategy It is a broad based, inclusive national Coalition, working in partnership, with over 17,000 members from across the NHS and voluntary and independent health and care sectors, LAs, social services, housing, faith, community and retirement organisations, schools, legal, insurance and funeral sectors “Support changing knowledge, attitudes and behaviours towards death, dying and bereavement, and through this to make ‘living and dying well’ the norm.” Our Mission: 2

OUR GREATEST FEAR How scared are you of the following happening to you? Dying in pain 83% Dying alone 67% Being told you are dying 62% Dying in hospital 59% Compare with: Going bankrupt 41% Divorce/end of a long-term relationship 39% Losing their job 38% Comres 2011

I MPLICATIONS FOR A CTIONS Communication is the key needed to make it easier for more people to talk about it The “It’s a long way off” perception: People more likely to talk to trusted family members and GPs Different Approaches/tools Needed for different groups/audiences target groups: 55 – 65s 65 – 75s GPs

Community Group Members Local Hospices Funeral, legal, Insurance, finance services Age UK, pensioner orgs Nursing &Care Homes Housing Associations LAs, PCTs, GPs, CCGs Carers Acute hospitals Bereavement services Faith & belief groups Coroners, police Schools/colleges Outputs Local network of engaged organisations Support resources for future planning Local events, open days Higher profile for dying well and for bereavement Outcomes More conversations leading to more planning, including PPC and ACP Greater priority for end of life care More DM members Community Development Programme Impact More people’s wishes are met Improved end of life care

DYING MATTERS COMMUNITY Easy to use Simple registration process Offers forums, blog, share your event/story Users can post comments in forum and blog You can: Register & post comments Add links & buttons to your websites Provide expert comment/ opinion Join DM Twitter & Facebook

Working with Communities to develop Messages

DYING MATTERS PROJECTS WITH NCPC Working with schools & hospices 8 “I was really nervous about coming here but it’s really nice, you kind of forget that people are ill after a while” “This is the first time our work has ever meant something to someone else” “It’s really nice for the patients but it’s also great for the staff, there’s a different feel on a Wednesday when you guys come in” “ I look forward to the kids coming, I don’t often get a chance to speak to people from that generation”

COALITION OF INTERESTS WORKING TOGETHER “Dying is an art, like everything else, I do it exceptiona lly well.” Lady Lazarus by Sylvia Plath Planning for a ‘good death’ includes Legal and Financial Matters –Making a will, insurance, cost of funeral Organ Donation – save other lives Preferences and Future Planning –Type and place of care –Worries, family issues to address –Resuscitation decisions Funeral Arrangements Leaving a Memorial / Legacy Preparing loved ones for bereavement –What would you like people to know before you die? New Bereavement Alliance

Just 25% of bereaved people said they received the support they needed Over a third of people say they wouldn’t be able to afford the funeral if a loved one died Comres 2012 Survey Findings 2012

VOICES SURVEY 2012 First national survey of bereaved people Views of Informal carers for the Evaluation of Services Questionnaire sent to 48,766 people who registered deaths 1 in 6 of deaths between 1/11/10-30/6/ months after death 45.7% response rate (22,292)

Lewisham: A Practical Approach Dedicated Dying Matters Service on Thursdays offers: One to one help with practical issues Signposting Emotional support Supporting vulnerable members of the community Main Concerns: Wills Funerals Carer issues

Small Actions: Big Difference

Member Activities

Final Chapters Entries

How many people did your activities reach? Just over 170,000

Please estimate your investment in these activities Almost £110,000

Please estimate the number of volunteer hours which your activities benefited from? Over 11,000

Media Impact Substantial coverage with over 400 separate articles compared with 200 in 2011 Articles in 6 national newspapers- including prominent coverage in Daily Mail, Guardian and Archbishop Dr John Sentamu in Daily Telegraph BBC Breakfast TV, BBC Radio - Radio 4 Sunday Programme, Today,Thought for the Day, BBC Radio 5 Live Extensive online coverage including on Daily Mail website - the world’s most visited English speaking newspaper site with over 5.6 million daily visitors

Media impact Articles across health media, including GP magazine, BMJ and Nursing Times Great new coverage including Time Out magazine Estimated radio reach of 3.3 million listeners through the 17 regional radio interviews carried out by me for awareness week launch Interviews across regional radio and TV with coalition members Adverts for Dying Matters run by NHS in Manchester ran across North West radio stations

Traffic- dyingmatters.org Page views THREE times higher than in 2011

Twitter tweets & retweets volume Number of tweets and retweets before, during and after Awareness Week

Dyingmatters.org overall social media trends May 2011 – May 2012 On average, traffic has increased by 205% Next Year’s Date: May 2013