M. Matthiesen UCLAN Presentation 2011 Putting Patients and the Public First The Power of Stories...

M. Matthiesen UCLAN Presentation 2011

Putting Patients and the Public FirstThe Power of Stories

Mary Matthiesen, UCLAN Research AssociateDirector, The Conversations for Life Programme

Stories to Change, CIC


Stories Teach

• Public and patient experience is ultimately WHY we do what we do.

• To help improve end of life education and training for professionals in the future, we asked the public to share their experience.


Setting the SceneOur work with the public

-DH/NHS Goal: Putting Patients and the Public First-Conversations for Life Programme & Pilot Project-How we incorporated some of this approach

with the End of Life Scoping Study-Provide a context for the data you’ll hear-Consider what’s possible moving forward

We All Have a Story

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The Pilot Project

Background & Outcomes

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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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• 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 workshops

The Pilot Project


The Real Stories

Pilot Project Outcomes & Lessons LearnedIn only 3 months since it’s 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 conversationsb. Explore what matters most to youc. Make informed choicesd. Let people know your wishese. Access resources over timef. Begin to create a plan for your future care

83.6% responded with a 4 or 5 out of 5How 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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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 individual’s 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 one’s 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 DirectorNational End of Life Care Programme


• As a result, the programme is now being made available to organisations across the UK under a not-for-profit social enterprise Stories to Change, CIC. (www.conversationsforlife.co.uk)

Approaches used in the Conversations for Life initiative were applied to the UCLAN scoping project to engage the public.

The public were invited to share their experiences of end of life care in the Northwest in order to improve the future of end of life care education for health and social care staff.

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End of Life Scoping ProjectPutting the Public First

• Call for public stories-press• Flyers, Surveys, Focus Groups• Awareness via local community agencies• Locally based focus groups• November-January


The Power of Stories(initial quotes from the Northwest)

“You can tell the one’s that care.”

“She really engaged with mum when other’s talked across her.”

“They need to know that taking a temperature is not care.”

“It seemed they spent more on redecorating perfectly good settees than on paying their staff.”

“Everyone is so ‘nice’. They ask him if he wants to have a bath. If he says no, they leave it. This can go on for days….. I’m at work. What can I do? …..The man is incontinent.”

“We’d cared for her for 6 years. The next time she got an infection, the consultant talked with us about antibiotics. We decided finally to let nature take it’s course, which was not an easy decision. The next day, I overheard a nurse saying ‘how could they do that?” She shouldn’t have said it in my earshot.”


Putting Patients and Public FirstWe All Have a Story

Consider what’s possible when we link

• Patient and Carer Stories• Staff Perspectives• Recommendations to improve

Education around EOL Care

M. Matthiesen, 2011

M. Matthiesen UCLAN Presentation 2011 Putting Patients and the Public First The Power of Stories...

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