www.ncpc.org.uk key learning from dying matters activities & awareness week small actions- big...
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www.ncpc.org.uk www.dyingmatters.org
Key Learning from Dying Matters
Activities & Awareness Week
Small Actions- Big Difference
Eve Richardson
www.ncpc.org.uk www.dyingmatters.org
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
www.dyingmatters.org
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
www.dyingmatters.org
IMPLICATIONS FOR ACTIONS
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/toolsNeeded for different groups/audiencestarget groups: 55 – 65s 65 – 75s GPs
www.ncpc.org.uk www.dyingmatters.org
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 daysHigher 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 DevelopmentProgramme
Impact• More people’s wishes are met• Improved end of life care
www.ncpc.org.uk www.dyingmatters.org
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
www.ncpc.org.uk www.dyingmatters.org
Working with Communities to develop Messages
www.ncpc.org.uk www.dyingmatters.org
DYING MATTERSPROJECTS WITH NCPCWorking 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”
www.ncpc.org.uk www.dyingmatters.org
CO
AL
ITIO
N O
F IN
TE
RE
ST
S W
OR
KIN
G T
OG
ET
HE
R
“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
www.dyingmatters.org
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
www.dyingmatters.org
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 1/11/10-30/6/11
4-11 months after death
45.7% response rate (22,292)
www.dyingmatters.org
www.ncpc.org.uk www.dyingmatters.org
www.ncpc.org.uk www.dyingmatters.org
Lewisham: A Practical Approach
Dedicated Dying Matters Service on Thursdays offers:
One to one help with practical issuesSignpostingEmotional supportSupporting vulnerable members of the community
Main Concerns:
• Wills• Funerals• Carer issues
www.ncpc.org.uk www.dyingmatters.org
Small Actions: Big Difference
www.ncpc.org.uk www.dyingmatters.org
Member Activities
www.ncpc.org.uk www.dyingmatters.org
Final Chapters- 1400 Entries
www.ncpc.org.uk www.dyingmatters.org
How many people did your activities reach?
Just over 170,000
www.ncpc.org.uk www.dyingmatters.org
Please estimate your investment in these activities
Almost £110,000
www.ncpc.org.uk www.dyingmatters.org
Please estimate the number of volunteer hours which your activities
benefited from?
Over 11,000
www.ncpc.org.uk www.dyingmatters.org
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
www.ncpc.org.uk www.dyingmatters.org
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
www.ncpc.org.uk www.dyingmatters.org
Traffic- dyingmatters.org
Awareness Week
Page views Total visits Unique users
Average page views/visit
2011 29,270 8,809 7,167 3.32
2012 97,227 +230% y-o-y
14,059+60% y-o-y
11,216 +55% y-o-y
7.06+113% y-o-y
Top 5 pages Number of views
Dyingmatters.org 21,097
‘Last Laugh’ film 6,970
Dying Matters Awareness Week page 3,460
‘I Didn’t Want That’ film 3,446
Events 3,343
Page views THREE times higher than in 2011
www.ncpc.org.uk www.dyingmatters.org
Twitter tweets & retweets volume
Number of tweets and retweets before, during and after Awareness Week
www.ncpc.org.uk www.dyingmatters.org
Dyingmatters.org overall social media trendsMay 2011 – May 2012
Month/Year Page views Total unique users
Average page view per week
April 2011 36,145 8,434 6,656April 2012 93,210 21749 9,155May 2011 78,303 16,661 17,681May 2012 206,165 21,690 46,553
On average, traffic has increased by 205%
Next Year’s Date: 13-21 May 2013