Www.ncpc.org.uk Key Learning from Dying Matters Activities & Awareness Week Small Actions- Big Difference Eve Richardson

www.ncpc.org.uk www.dyingmatters.org

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:

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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


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


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


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 MATTERSPROJECTS WITH NCPCWorking with schools &

hospices

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“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”


CO

AL

ITIO

N O

F IN

TE

RE

ST

S W

OR

KIN

G T

OG

ET

HE

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“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 1/11/10-30/6/11

4-11 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 issuesSignpostingEmotional supportSupporting vulnerable members of the community

Main Concerns:

• Wills• Funerals• Carer issues


Small Actions: Big Difference


Member Activities


Final Chapters- 1400 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

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


Twitter tweets & retweets volume

Number of tweets and retweets before, during and after Awareness Week


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

Documents

Www.ncpc.org.uk Key Learning from Dying Matters Activities & Awareness Week Small Actions- Big Difference Eve Richardson