1000 Lives Plus – Patient and Person Driven Care Case Study Page 1 of 13

Overview

This case study is based on Cardiff and Vale University Health Board’s experience of inviting a carer to provide their experience at a Board meeting.

It also includes a checklist designed to support other organisations considering

testing the same approach.

Authors

Tim Heywood, Sarah Puntoni, Mike Spencer

Published

April 2012

Copyright

Copyright of this publication belongs to 1000 Lives Plus.

Face to face storytelling at a Board meeting

Patient and Person Driven Care

Case Study – No. 3

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1000 Lives Plus – improving care, delivering quality

1000 Lives Plus is the national improvement programme supporting organisations

and individuals to deliver the highest quality and safest healthcare for the people

of Wales.

Every health board and trust in Wales, together with universities, voluntary

organisations and charities, other public sector services, and commercial

organisations are involved in 1000 Lives Plus.

The programme is focussed on building capacity and sustaining and spreading

improvements. It supports frontline staff across Wales through evidence-based

‘programme areas’ and provides clinical leadership through its Faculty. It is

committed to engaging patients and students in improvement work and promotes

an internationally-recognised quality improvement methodology.

1000 Lives Plus is underpinned by measurement to illustrate improvement, and

facilitates collaborative working to test new methods and protocols. The central

team supports senior managers and frontline staff to deliver the quality of care

that every person needs, everywhere and every time.

www.1000livesplus.wales.nhs.uk

1000 Lives Plus – Ensuring Patient and Person Driven Care

1000 Lives Plus emphasises the centrality of the patient in all its improvement

work. It has actively promoted the involvement of patients in their own care and

key decisions relating to treatment.

The voices and stories of patients are an effective and powerful way of making

sure the improvement of services is centred on the needs of the people using the

services.

‘Stories for Improvement’ have helped identify numerous small changes that have

resulted in large improvements. 1000 Lives Plus has encouraged using stories to

ensure that the patient's voice is heard at the highest level, in board meetings and

at national conferences.

www.1000livesplus.wales.nhs.uk/public-engagement

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Introduction

1000 Lives Plus promotes the use of stories in board meetings as one way of

ensuring that the public voice remains central to decision-making. NHS Wales

health boards face challenges in balancing demanding strategic agendas alongside

a focus on quality and safety from a service user perspective.

The 1000 Lives Plus ‘Leading the way to quality and safety improvement’ How to

Guide outlines a range of formats in which stories can be used. The most complex

of these is the attendance of a patient or family member at a board meeting to

tell their story in person. Cardiff and Vale University Health Board is the first

organisation in Wales to use this format, providing an opportunity to draw out

learning points that will be useful to other organisations.

Intervention: Hear Stories

Stories can complement quantitative data in a powerful way to increase focus

and engagement with quality and safety issues. For Leaders, this includes

using stories in formal meetings. This can be challenging and during the

Campaign organisations were encouraged to become familiar with using

positive stories about the impact of quality improvements before engaging

with more challenging stories concerning patient harm. A number of different

formats for story presentation can be used, including, amongst others:

A brief story told by a member of staff. This can be used at any meeting and its purpose is to energise and focus

attention on a safety or quality issue, bringing it to life by highlighting its

human impact. The story will have most impact if it can be linked to a

specific agenda item where qualitative information on the wider context is

also provided.

A short video or digital story told by a patient or someone close to them or a member of staff.

This requires more advanced work and technical support, but has been

used effectively during the 1000 Lives Campaign.

Attendance by a patient or family member at a meeting to tell their story directly.

This approach requires high level of preparation and support and should

not be considered unless you are confident that it is appropriate under the

particular circumstances.

1000 Lives Plus, Leading the way to quality and safety improvement. (2010)

1000 Lives Plus, Leading the way to quality and safety improvement. (2010)

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Methodology

The story on which this case study is based concerns the experience of a carer over

a number of years. For the purpose of the case study, it is primarily the context

and impact of the story, rather than the content, that is of relevance. The case

study draws out learning that will be of wider relevance to other organisations

seeking to use stories in this way.

A range of Board members were interviewed:

Board Chair

Board Deputy Chair (Chair Quality and Safety committee)

Independent member (carer representative)

Executive Nurse Director

Executive Director – Therapies and Health Sciences

Executive Director of Public Health

The senior manager responsible for improving patient experience was also

interviewed.

All interviewees were given a list of questions to consider in advance and

interviews took the form of a discussion, using the questions as a general guide.

The interviews were filmed and transcriptions were used to draw out significant

issues and general themes. Footage was subsequently edited to provide a resource

which can now also be used for training.

The findings are organised under headings which relate to interview questions.

Is the format of the story important?

The Board had previously used stories in various formats (written, digital, video).

However, this was the first time a person had been invited to tell their story in

person.

Several interviewees emphasised that the Board had needed to reach a level of

maturity around their use of stories to respond appropriately to potentially

negative stories directly told. Earlier experience of using positive stories in other

formats was recognised as an important building block towards this.

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All interviewees agreed that the content of the story was more important than the

format, but recognised that in this case, the presence of the storyteller had a

greater impact than a second-hand account.

However, not all interviewees agreed with the view that the presence of a ‘first

person’ storyteller necessarily has the greatest impact and argued that using a

variety of formats is important to maintain interest and focus.

How should stories be selected?

In Cardiff and Vale University Health Board, the Director of Nursing is responsible

for deciding on the story to be presented at each board meeting and selects a

topic relevant to a specific board paper/ topic. In this case, the carer’s story was

linked to the papers on the development of a carers’ strategy and the

implementation of the carers’ measure. This link between the story and specific

agenda items was referred to by most members as important to ensure stories add

value to Board discussion and decision-making.

You need to have some variety. When I‟m considering a patient story, I would

choose the message that we‟re trying to get through and connect it to the

paper, and then consider what format would be best. [Executive Director]

We thought that if we took her to the Board, the story would come over in the

most powerful way - more powerful that if it‟d been said on her behalf. [Senior

manager]

The story made a real difference to the level of debate and discussion we had

in relation to the carer‟s strategy. This was because we had a real carer in the

room who talked about what it had been like to them. [Executive Director]

There is something about the Board developing a culture of speaking about

patient and carer stories. It requires leadership in the sense of sensitivity and

respect from everybody in the way they are handled. [Independent member]

We weren‟t mature enough [at first] to be debating the very negative stories

that some of our patients presented. I‟m not suggesting that we weren‟t

prepared to hear them and that there weren‟t ways in which we were hearing

them. It was just to take a negative story to set the scene was not where the

organisation was at the time. [Executive Director]

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It was suggested that a clear and open story selection process would be useful to

support the open agenda of the organisation. A central bank for collecting stories

from across the organisation was suggested as a future development to support

this.

What preparation is needed when using this format?

The potential risk of harming the storyteller by presenting personal and emotional

experiences in an open and formal forum was identified by most interviewees.

In this occasion, contact was first made with the carer more than a year before the

story was told in the Board meeting. Preparation included several meetings with a

senior nurse who was able to build a relationship and clarify expectations from

both the carer and the Board. The option of using a video format was discussed.

A number of interviewees also highlighted practical planning considerations.

Given the acknowledged difficulty in narrating an emotional experience in an open

and formal forum, it was suggested that inviting the storyteller to bring someone

to the meeting could be beneficial.

All interviewees described how the ability of the carer to tell their story in a

balanced manner was an important factor in the way the story was received. It was

We took time to help [the carer] understand what the forum looked like, what

we were looking for, and to understand what she was able to give to us. We

asked: “could we video you and would you be comfortable to be present?” As

we got to know her, it was clear that she would be comfortable speaking in the

meeting. [Executive Director].

Although we had the strategy paper, we were then able to check and scrutinise

whether what we said in the strategy is what is going to be done on the ground.

It‟s marrying the gap between what we say in policy and practice. I think it

made it a much more active conversation. [Deputy Chair]

There are some other practical preparations that you also need to consider. If

you are asking a carer to visit, you need to be sure they are not caring for

somebody at the time of the Board meeting. So you need to manage that

appropriately or make arrangements to support the care that is being delivered

to the individual to release the carer to come. [Executive Director]

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felt that because both negative and positive examples of care were shared in a

calm and dignified manner, this played an important role in ensuring a positive

reaction to the story.

Many interviewees also recognised the potential risk to the organisation of bringing

the storyteller to an open Board meeting. It was suggested that Executive Directors

should prepare themselves on potential issues raised by the story that could be

relevant to their areas of responsibilities to be able to respond accordingly to any

questions or issues raised.

During the meeting, how did the story influence the conduct of the meeting?

The skill of the Chair in creating a respectful environment for the story teller was

praised by many interviewees, even though aspects of the story were not easy to

hear and a number of interviewees experienced frustration at the lack of

engagement and support from the service that was described.

I wasn‟t expecting the intensity of the negatives; I wasn‟t expecting to hear a

very articulate, well balanced, reasonable approach brought forward. It wasn‟t

emotional as such, I just wasn‟t expecting to hear someone telling us that we

really weren‟t very good at listening and understanding what the family was

trying to say. [Chair]

When you are a director, if you walk the floor, patients will tell you what you

want to hear. So I had to balance that recognition that I had an individual who

was holding the Board to account and I had absolutely no idea what she was

about to say. I was under no illusion that there was considerable risk associated

with that. [Executive Director]

The carer did recount some very difficult and frustrating experiences. But

where the care had been good and where communication had been good with

staff she was more than happy to acknowledge that as well. [Independent

member]

Part of the success on this occasion was that we had done the preparation. We

actually had a carer who believed that we wanted to hear the story to improve

things. So we didn‟t have a carer coming to get all their criticism off their

chest, and tell us how bad we were. This was a lady who believed that we

meant what we said when we wanted to hear her experience, so we could make

a difference for the future. [Chair]

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All agreed that the story played a significant role in the way the board

subsequently received the Carer’s Strategy. It was felt that the story helped

illustrate and brought to life the issues raised in the strategy. Some felt it

increased the sense of urgency and agreement of the timeline of the strategy

implementation; others found it a helpful contribution to discussion, but didn’t

think it necessarily influenced the decision making process.

Most members recalled that the story was mentioned in subsequent discussions

related to other agenda items, indicating the impact of the story on the wider

meeting.

Many agreed on the difference between an individual hearing the story, who is

influenced by their background, area of expertise and personal life experiences;

and the organisation, which includes the collective hearing of all members and its

influence on collective decision making.

Members of the Board also highlighted the importance of providing members of

the public who were observing the meeting an opportunity to comment.

You needed to be there to appreciate the impact - and the discussions in the

brief coffee break. I can‟t evidence this, but the whole meeting was very much

influenced by what we had heard at the start of the meeting. [Chair]

We were coming from different angles, but we all agreed that we needed to

listen, we needed to learn from this and we needed to make sure that what we

heard, the changes that need to be made, were made on frontline services.

[Independent member]

There is no point in listening to a patient story if you don‟t do something about

it. At some place it has to interface with „and how are we going to make sure

either that this doesn‟t happen again or how are we going to make sure that we

replicate that good practice again‟. There has to be some follow through.

[Executive Director]

We have got to use the evidence base. Now the evidence comes in many ways.

Stories can contribute to that evidence. But I think they are a contributor and

we have to be very careful not to allow single issues to disproportionally effect

decision making. [Executive Director].

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In general terms, many interviewees described how using stories in public Board

meeting helps strengthen the open and transparent culture of the organisation.

Following the meeting

It was recognised that as the first test of bringing a carer/patient at Board,

attention was solely on preparation for the meeting and that more thought should

be given to post-meeting follow-up support and de-briefing for the storyteller.

Mapping out the entire process in advance may have been helpful to ensure the

carer was appropriately supported throughout the process.

Beyond the Board – using stories at other organisational levels

Interviewees agreed on the potential of stories for supporting a patient centred

culture throughout the organisation.

Three key areas were referred to:

Stories to influence and educate middle managers and ensure that what is

set out in strategy by the board is delivered in practice.

Stories to remind all staff of the impact of everyday care on the life of

patients and their families.

Staff stories as important contributors to assess the level of care provided

and identify areas of improvement.

The middle of the organisation are our ambassadors, they are the facilitators

for whatever we decide on the board. [Deputy Chair]

Often it is the little things that we forget, and very often it is all the little

things combined which make the enormous difference to patient experience,

carers experience, and even outcome at the end of the day. [Executive

Director]

Pre-meeting briefs we did very well. The excitement was about getting to the

board meeting, but we didn‟t map out what would happen afterwards. That is

something we would look to do better next time and also advise others to look

at. [Senior manager]

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Staff storytelling - actually to hear views from staff are also extremely

interesting. I‟m not sure that we listen often enough to staff, of their

experiences of how the system could be better. [Executive Director]

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Checklist for bringing a patient/carer to tell their story in person to formal

meetings:

1. Identify an agenda item where a story would be a useful complement to a

formal agenda paper. If a suitable story is not already available from your

organisation’s bank of stories, consider identifying a new story/ storyteller.

2. Allow plenty of time between identifying a potential story and the planned

meeting you are intending to use it at. This process can’t be rushed and you

must allow enough time to prepare both Board members and storyteller.

3. Ensure you have consent to contact the storyteller. You must be ethical at

all times in all your dealings with stories and their storytellers.

4. Arrange an informal meeting to discuss accessing the story for use at formal

meetings.

5. Discuss with the storyteller how you intend to use the story and why you

have selected them specifically. Listen and familiarise yourself with the

story and its contents.

6. Discuss with the storyteller various possible formats for the story (written,

audio recorded, filmed, digital, face to face). If you agree on a face to face

format, make sure all practical needs of the story-teller are taken into

account at the planning stage, including date, time, location and physical

access.

7. Consider asking the storyteller to sign a consent form agreeing to share their

story at a public meeting.

8. Suggest that they consider bringing a visitor with them to support them on

the day.

9. Make sure that someone is identified to meet the story teller on the day and

look after them.

10. Make sure all Board members are aware in advance that a storyteller will be

present and the story topic.

11. Following the meeting. You should organise a de-briefing with the

storyteller, including feedback on the impact of their story and actions to

be taken as a result of the meeting.

12. Consider discussing with the storyteller other potential uses of their story

and their willingness for further involvement.

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Checklist for story selection:

1. The storyteller must be able and willing to provide their story at a public

and formal meeting.

2. The story should be new and not already known to the intended audience.

3. The story should be a balanced and personal account of events, including

both negative and positive experiences.

4. All available formats should be considered and discussed jointly by the

organisation and the storyteller.

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