The Connection

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• The Connection
• Between Advance Care Conversations and You

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• What Brought You Here?
• Your Stories.
• Your Experiences.
• Your Care.

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• How people die remains in the memory of those
  who live on.
• Dame Cicely Saunders

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• What Brought Me Here
• Mary Matthiesen, Director
• The Conversations for Life Programme
• Stories to Change, CIC

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• What is it?
• An Approach
• A Programme or Workshop
• An Integrated, Community Intervention

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• Conversations for Life are conversations that can
  help individuals, families
• and professionals explore and impact
• our quality of life care in the future.
• Why talk about the future now?
• Most people have experiences that inform what
  they would want for their care,
• but they havent told anyone.
• Medical treatments, our communities and our care
  needs have changed.
• Legislation gives rights to the individual around
  choices for our care, and
• Healthcare professionals are required to act in
  our best interest ..

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Yet, how can anyone act in our best interest if
we havent explored what that might mean,
havent learned what our options are, and
havent told anyone what matters most to
us? Its like youre in a bubble and you need
to make some of the most important decisions of
your life. -Mrs. B, Cumbria The worst time
to begin these conversations is when they matter
most
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• Today is a taster
• Introduction to the Conversations for Life
  programme
• Explore your personal and professional beliefs
  around
• advanced care planning
• Strengthen confidence in talking with patients or
  family members about their wishes
• Break the taboo of talking about death and dying
  in order to influence end of life care.
• Share outcomes of the pilot project in one
  community

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There is no wrong way to do this. There is
only your way. And your way is the right way
for you
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• Your Experience
• .Is

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• What Brought You Here?
• A good death
• .

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• Your Wishes. Your Preferences. Your Care.
• A practice in listening..
• .

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• I know Im going to die.
• I just dont want to be there when it happens!
• Woody Allen
• American Comedian
• .

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• The Pilot Project
• Background Outcomes

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• The Pilot Project with NHS Cumbria
• Promoting quality of life and independent living
  by increasing self-management of care and choice
  in end of life care as one if its 10 World Class
  commissioning priorities.
• Although most adults would prefer to die in
  their own home, 22 of Cumbrians currently do.

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• The Pilot Project Aims
• To develop and offer the first phase of a
  Cumbria-wide, community based public and
  professional engagement campaign around end of
  life (advance care) conversations and care.
• To increase awareness of the importance of
  advance care conversations.
• To raise awareness and access to resources
  available to support the public.
• To encourage/catalyze these conversations between
  individuals, family members and professionals is
  the focus of this project.
• Background Outcomes

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The Pilot Project

• A public awareness and education initiative
  around end of life conversations and care
• Inspired by the stories of local people (in
  Cumbria)
• Supported by NHS Cumbria and partner
  organisations to
• Raise awareness of the importance of advance
  care conversations
• for individuals, family members and communities
• Help people to know what resources exist, and
• Support people to learn how to begin these
  conversations to
• influence your care for the future.
• Includes
• Cross sector steering group
• Quotes and Short film of stories of people living
  in Cumbria
• Designated Website
• Community based events and workshops

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• .

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• Basic Premise
• We cant honour someones wishes
• if we dont know what they are.
• We cant be truly open to talking with others
  about their wishes
• if we fear opening the conversation ourselves.
• We will all need to communicate our wishes
• if we want them to be honoured.
• A practice in listening..

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• Pilot Project Outcomes Lessons Learned
• In only 3 months since its launch
• Website has had 3645 visitors with an average
  of 23 visitors per day.
• Media (BBC Radio Cumbria and locality papers)
  are estimated to have reached more than 200,000
  with positive stories.
• 93 members of the public attended 11 workshops in
  6 localities across Cumbria.
• Participants included both public and
  professionals

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• Workshop Evaluations indicate the project to date
  has been
• successful in achieving the outlined goals for
  the campaign.
• On a scale of 1-5 (5 being high)
• Did you feel you learned something useful about
  how to
• a. Open these conversations
• b. Explore what matters most to you
• c. Make informed choices
• d. Let people know your wishes
• e. Access resources over time
• f. Begin to create a plan for your future care
• 83.6 responded with a 4 or 5 out of 5
• How likely are you to implement your new
  knowledge?
• 89.5 responded to the following question with a
  4 or 5 out of 5
• And 97.5 would recommend the workshop to
  others.

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• There are many more options open to you than I
  was aware of.
• It made me realise how we will have to be strong
  and fight for what we want.
• To open a conversation with my mother and also
  with my husband.
• I think I'll be more bold.
• Talking to parents getting wishes shared with all
  children to if anything
• happens we are all on same page! Need to think
  about it now not later.
• How natural conversations for life could be if
  introduced in a casual /
• professional / personal choice way.
• To say what I like / dislike in case I cannot
  communicate to carers.
• This workshop has been inspirational. Thank you
  so much.
• Very useful. We need more information well
  presented like this. Practical and useful
• This course should be introduced specifically for
  professionals, as well as public, as I
• know many of my colleagues would have found this
  useful
• Hopefully more of these workshops could take
  place, to make people realise
• they have "choices"

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• In addition, The National End of Life Care
  Programme (DH) has endorsed the Cumbria
  Conversations for Life initiative with the
  following statement

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• This is both a fantastically practical and
  poignant project which could help thousands of
  families in Cumbria and beyond. Talking about and
  planning the care we wish to receive in the final
  weeks and months of our life is a crucial first
  step towards the good death.
• Health and social care staff, backed by many
  selfless volunteers, provide care and support to
  those nearing the end of their lives and their
  families.
• The more that individuals and their families have
  talked about death, dying and how they wish to be
  cared for, the more that care can be matched to
  the individuals wishes and needs. It will also
  help staff and volunteers provide bereaved
  relatives and friends with the support they need,
  as well as often improving the inner strength and
  resources which bereaved people can call on to
  cope with their loved ones death.
• We know that many parts of our society have not
  yet hurdled the cultural barriers to talking
  about death and dying. This project is another
  very welcome and innovative leap in that
  process.
• Claire Henry, National Director
• National End of Life Care Programme

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• How people die remains in the memory of those
  who live on.
• .

The Conversations for Life Programme provides a
simple first step to overcome fears of talking
about death and dying based on the real stories
of local people With tools for individuals,
professionals and communities to start the
conversation now.
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The Conversations for Life Programme is now
available for collaborations across the UK