Proposals for the BSPGHAN
During the afternoon of the 29/4/2004 in Birmingham participants were asked to consider two messages to be taken to the BSPGHAN policy meeting of 22/6/2004 in Birmingham. The multidisciplinary group acknowleged that it was futile to ask for large amounts of resources but that emphasis on policy and perspective might yield major changes in outcomes. Their collective view was highly patient centred and asked for the following to be considered:
Customer service orientation
All participants, not only parents, expressed concern about hospital environments and lack of consistent customer service oriented care. They wanted an emphasis on first impressions of environment and personal interactions, personal care including knowing name and history of patients, close to home as a principle for minimum travelling for care, accessibility to services, results and plans, and ‘no surprises’ care - planned by negotiation and plans adhered to.
IT developments
Participants wished for more adventurous use of IT with videoconferencing allowing referrals, clinical discussions and education among professionals and ultimately ‘consultations in your own living room’ for patients. Communication between institutions, currently variable in quality could be improved as a result. A National results and correspondence database with access by secure numbers would allow all professionals and patients access to appropriate results at any time. Nationally accepted protocols would allow more care to be undertaken in hospitals closer to patients’ homes.
Appendix 1
Birmingham 29 April 2004
Children’s Liver Disease Network
Why ‘Appreciative Inquiry’?
Key to this whole approach is a realisation that good relationships based on knowledge and trust result in powerful action. Traditional approaches look for actions/outcomes first as a demonstration that something is worth funding. The ‘appreciative inquiry’ approach is based on the knowledge that time invested at the outset to help build relationships, results in focused action. This action emerges more quickly; with more energy and motivation than traditional approaches because it comes from meaningful discussions between people who have had a meaningful conversation together. The nature of the approach also means that the action taken is more likely to be sustained and supported. Funding the relationship building process is a key difference that enables connections to be made and ownership to be shared. The diagram below shows the different approaches.
About Appreciative Inquiry
AI is a way of working with people in groups and organisations, who would like to change the way they do things SO THAT (for example):
- They have less conflict,
- They have more interaction,
- They cover more territory,
- They sell more widgets,
- They provide better services,
- They make their life more satisfying (for both users and providers of services).
Social change often focuses on problems and how to solve them.
The AI process focuses on best practices and how we achieve them.
It solicits “stories” about times when the organisation and its people were successful and felt most satisfied about achieving their goals.
The AI practitioner comes as a facilitator, not an expert.
He/she seeks to put people in touch with the heartbeat of the organisation.
It has been used in a wide variety of situations.
How and why does AI work?
- Research shows that we move towards the images we focus on in our conversation.
- Most traditional research focuses on what not to do or what is going wrong.
- AI is particularly effective at creating conversations, which generate images of hope and vitality, based on identifying and learning from actual moments of positive interactions across race, culture, ethnicity, gender and economic status.
- AI makes the transition from conversation to action much easier than other forms of change. AI encourages sharing stories, inviting creative reflections and stimulating ideas for the co-construction of new relationships, roles and processes.
- AI honours diversity. Everyone is heard.
- AI provides the way forward by creating energy for forward movement through its spirit of partnership and its!affirming focus on creating more of what works and is life giving.
- AI is extremely flexible, allowing for infinite adaptability to each situation’s uniqueness.
AI uses a variety of methodologies to gather information. Drawing and verbal communication are the main methods of gathering data. This enables those for whom English is not their first language or for whom literacy is an issue, to be involved in sharing their ideas and visions.
The 4D Model of Appreciative Inquiry
There are several different ways of considering what the Appreciative Inquiry system can do and how it works. Health Care and management systems come from and derive their thinking from traditions of problems solving. The process starts by identifying the problem. One then needs to analyse the cause of the problem before considering possible solutions, selecting one and finally, planning action. Appreciative Inquiry begins by appreciating; in other words valuing the best of what already exists. Based on those ideas, it is then possible to envision what might be. The process continues with discussion between interested parties about what should be and then those parties are able, collectively, to work to make their vision happen.
This process, created for application in the development of partnerships, is called the 4D Model. The 4Ds stand for Discover, Dream, Design and Deliver.
Discover: That is, to recognise and appreciate the best of what already exists by focusing on the times when the organisation has been most alive and effective. Even small examples of success, satisfaction, high performance and excellence, creativity and learning can displace an analysis of deficits.
Dream: This phase involves creating visions of the organisation’s possible future, it’s calling and it’s unique potential for contribution to something special in the world. This phase links the organisations successful history, the past, with a future of greater potential.
Design: At this stage the planning centres on the creation of the relationships that can make the dreams a reality in practical terms and at the day-to-day individual level. New relationships and understanding created through the Discover and Dream phases permit small groups of individuals to plan ways of undertaking day-to-day tasks and more ambitious projects. Creativity allows people to think of solutions that could not have previously been imagined, possible, permissible or even desirable as solutions to a problem. These new ways become apparent when considering making minor or even major desirable changes in the context of a new collective vision for the future.
Deliver: The final phase requires continuous learning adjustment and improvisation and is driven by the momentum of the shared positive images. Previous discussions are revisited and updated with a discovery of success. Time is spent envisioning the impact of further changes and co-constructing the future with a commitment to make the changes both individually and collectively towards the emergent vision of the future.
Appreciative Inquiry leads to the generation of some important feelings. The people involved feel a sense of responsibility and ownership for their decisions and actions. There is a growing recognition that small changes in our words, in our style of speech and our working interactions have an affect on everyone around us and ultimately in the nature of the organisation itself. Indeed even a small group of people who change the way they act together can fundamentally change the organisation towards an agreed goal and make that goal a reality.
Appendix 2 Process
Birmingham 29 April 2004
Children’s Liver Disease Network.
- As people came into the room we greeted them and allowed them to settle as a number had travelled a good distance and had also had to navigate around Birmingham and organise car parking etc. Tea and coffee and biscuits were available.
- Once a reasonable number of people had joined the meeting we did a very short introduction with Alastair Baker explaining the definition of a managed clinical network and a little bit about the earlier meeting in Crieff. He explained that there was another opportunity today to carry on with discussions both in learning from the expertise of those in the room but particularly around looking to the future of the network.
- Margaret Wright gave a short explanation of Appreciative Inquiry as a process that focused on the positive and what worked. It was particularly effective at enabling people with different perspectives to find out what they had in common and to share their experiences and hopes for the future.
- Participants were then asked to find someone they did not know and to ask each other about their experience of this network working at its best. They had 30 minutes in which to do this.
- Some pairs finished earlier than others and were asked to write on a post it one possibility they saw for this network in the future.
- Participants were asked to select from 5 topics written on prepared flip charts around the room. It was explained that there would be the opportunity to move to other groups and topics in the course of the morning and therefore this was not the only opportunity they would have to comment. The topics had not been intimated in advance of the meeting. Each group was asked to consider times when each topic worked at their best and note the core or essence of these times. The initial time allowed of this was 30 minutes.
The participants divided themselves up amongst the topics.
The topic headings were.
- LEARNING
- ROLES AND RELATIONSHIPS
- SHARE – CARE & LIVER DISEASE AT HOME
- ACCESS TO SERVICES – FIRST INTERACTION
- STANDARDS, PROTOCOLS AND SAFETY
At the end of this period of time, participants had the opportunity to move to another group as long as at least one person remained to pass on the thinking of the original group. This allowed people to contribute to another topic and for ideas to be spread around the room.
This took us up to the lunch time period when the group walked to the nearby offices of the Children’s Liver Disease Foundation nearby for a buffet lunch enabling them to have a change of scenery, fresh air, food and another opportunity for conversation amongst themselves and with the staff of the CLDF.
- After lunch there was a brief introduction to the ‘Dream’ phase of AI where there are no limitations on thinking about the future. The participants were invited to split into two groups with as wide an experience spread as possible. To enable this to happen and to allow everyone to appreciate who was in the room, the participants were asked to group themselves into one of these categories, i.e. Doctors, Consultants, Parents, Specialist Nurses, and Representatives of Drug Companies. A self-forming group identified themselves as ‘Miscellaneous’ as they consisted of a member of the CLDF, a ward nurse and an administrator.
- The participants then self organised into as broad a mix as possible and we had two groups of about 8 people in each. They were asked to spend an hour and a half considering
Ideal Best patient pathway.
When something ‘wrong’ meets a network that works and motors along.
A journey to ‘I know not where’ with great company and wonderful images in a safe vehicle’
This was illustrated for explanatory purposes like a road map with a winding tortuous route that had a start and a finish and a positive core.
At the end of an hour we asked both groups to focus in on one aspect of the pathway and add some more detail.
We closed with a short comment from each group about their thoughts on this last session and also some insights and comments from individuals about the day in general.
They were also asked them to add their feedback to flip charts with pre prepared questions. These were
- WHAT IS EXCITING OR IMPORTANT ABOUT THIS WAY OF WORKING
- WHAT HAVE YOU LEARNED THAT IS MOST USEFUL
- WHAT WAS THE HIGHLIGHT OF TODAY FOR YOU
- WHAT COULD YOU DO TO TAKE YOU TOWARD GOALS
Appendix 3
Outputs On Flip Charts
Comments at the end of the day - ideas and way forward.
Crucial role of GP-but none here today.
Idea of an educational programme for people to keep up to date with Liver knowledge and organisational information and practical procedures. E.g. Chris Spray and endoscopy-no need to travel from Bristol but could watch on video conferencing. Could access via other agencies e.g. local schools have this and could build a relationship with the hospital and the school.
Apply customer care principle to Health providers. Be aware of first impressions - Call people by their name- first impressions arriving on a ward as a member of staff and seeing an old crumbling building and no one there to welcome you etc.
Importance of IT to the whole system and to what people do. IT in-patient records and perhaps use of a Credit card approach-you put in the card and you get all the info re the record.
Families could have Medic Alert bracelets / necklaces which would alert healthcare professionals to the fact they had a medical condition or treatment. The data is kept on computer and the healthcare professional could get this information by calling the number on the disk and giving the patient’s details. This is a service for which people have to pay and puts it in the hands of the patients and not the medical system.
Facilitate better customer care
‘Message in a bottle’ idea-this is where a patient has crucial info re them and their health and medication in a glass bottle in the fridge-where anyone can access it and they have a notice in a window of the house so that ambulance and other emergency helpers know where to find it and can act on it and save valuable time.
Training opportunities to tap into via the drug companies.-Mandy was offering the opportunity to join in their training and also to get ideas form them re data sharing, info sharing etc.
Use existing communication pathways to share info e.g. drug companies to GP’s
Perhaps an annual conference of this type of thing- from Chris Spray.
Use case histories to reach and influence GP’s –they will pay attention to this-their use this for their own learning. NB this network could use the patient and other stories they have gleaned from these events to inform and educate others re the ideas and how the service works and could be improved.
Two group sessions after Lunch looked at creating an ideal/better patient pathway from start to finish. Encouraged to take a helicopter view and not be overwhelmed but the size of the issue.
One group concentrated on First Impressions. The other on the Family/home.
They then each took an hour to home in on their subject.
Here is a summary of some of the ideas that emerged from these two groups.
First impressions are key story of the first day on the ward for a member of staff.
Close to home is a key guiding principle-for patients want treatment and care to be close to home, professionals would like their training and experience to be close to home.
Use of the Internet and cameras could mean that there could be consultations in the patient's own home.
Accessibility is key too both for people, learning and records.
Communications are key-continuity of them.
Interaction –national centres, everyone needs to know and understand what is expected of them –issue about standards.
Appendix 4. Flip charts from the 5 Group discussions
Topics were:
- Learning
- Sharecare, Liver Disease at home.
- Access to services first interaction
- Standards protocols and safety
- Roles and Responsibilities
Flip chart notes from each group
LEARNING
Don’t know how you cope.
Experts-all
How to get information you want when you want it.
Making people aware of all the aspects.
SHARE CARE LIVER DISEASE AT HOME
Message in a bottle
School info
Communication/info
Standard procedures
ACCESS TO SERVICES FIRST INTERACTION
Information technology that facilitates communication, learning, stops families moving around the country inappropriately,
STANDARDS PROTOCOLS & SAFETY
Nationally agreed protocols (evidence based)
Improve learning and sharecare
Improve standards of care and safety
Used for learning and teaching
ROLES & RELATIONSHIPS
Consultant B + patient relationship
Approachability
Positive attitude
Knowledge
Family support liver team, children/family value of knowing units, pivotal role, what to expect.
Team relationship- knowing your team members, calling on individual attributes to make positive outcome.
First impressions---letter headings! Ward ‘reception’;
Forums for getting together
Interhospital relationships and responsibilities
Clearly defined roles: clear pathway to appropriate person.
Appendix 5 Patient pathways
Group 1. Key features of the experience of quality in health-care
Clarity of care pathway
Right information at right time
Welcoming environment
Customer care
Continuity of care – regularity/predictability
Pride in provision
2. Group 1 Comments
ANXIETY
Finding out results
Time to wait
Patient pathway
Parents
Felt & saw didn’t look right’
Mentioned several times (to professionals)
Routine check
Community nurse
(calling more frequently)
rechecked test ? what abnormality?
Result sent by letter
Health visitor
GP
Paediatrician
Blood test result
Liver disease diagnosed
Pointers to care
Listen
Trust parents’ intuition
? final answer
? explanation
? significance
Chance to query
RIGHT TO ANOTHER OPINION
3. Comments
Balance between close to home vs. knowledge, skill, and experience
? results given by phone or leave till meeting
listened to – told – information ‘sunk in’
excellent relationships
Patient pathway
GP
Local investigation
Tertiary investigation
Blood tests – phone call in 1 week
Diagnosed
Trying to find out what it means
Asked friends, GP, surfed Internet
Liver clinic
Admission
8 Disciplines
Pointers to care
Environment
Confidence
‘Looks right’
Met at door
Called in by name
‘Expected’
Customer aware
‘own home’
‘treat as like to be treated’
predict needs
Welcome pack
Food if you need it on arrival
In time – when you need it!
Timetable of events/investigations
4. Comments
Sick babies – knew what to expect
Dietitian,
specialist nurse
HV - ? ‘What is my role?’
Vaccinations
Weaning
Medications
Weighing
Information
“Can she have Calpol?”
Access to system/know-how
Patient pathway
Admission
Assessment
Liver biopsy
Best treatment
Medicines
Feed regime
Home
Administration of treatment at home
Clinic follow-up
Further treatment
Pointers to care
In touch with families carries into relationships in hospital
Time to talk, facts, scenarios explored, outcomes & problems anticipated
HV role
Specialist nurse visit at home – meets HV
Specialised information
Children’s Liver Disease Foundation
5. Comments
What can parents expect?
Patient Pathway
Access to services
Personalities
Relationships
*Partnerships
Pointers to care
Guidance on what to do/say
‘Principles’ – how the system works
*CLARITY*
Group 2
The second group discussed the patient pathway as having the patient and family at the centre. A GP would have an electronic database with the vital information on it flagged up There would be a family tailored package and the family would have someone that they could consistently link with i.e. one linking person as the consultant for example. They drew a diagram that illustrated their discussion.
Liaisons Shared Experience
Possibilities For This Network
National Results Database Proper National Guidelines
Electronic Notes
Clear personal tailored package of care
Appendix 6
Birmingham 29 April 2004
Children’s Liver Disease Network
Managed Clinical Networks
A short article by Catherine Arkley
Chief Executive of the Children’s Liver Disease Foundation
For the Department of Health, managed clinical networks have a key role in bringing together patients and health professionals from all disciplines to plan services locally, based on local needs and priorities, but to nationally agreed standards. They also ensure traditional boundaries - primarily between GP-based and hospital services, are broken down so that patients receive integrated treatment and care based on their individual requirements - not based on buildings or organisations.
Dr Alastair Baker, Consultant Paediatric Hepatologist at King’s College Hospital, London is leading a project which aims to identify the facets of effective managed clinical networks for the care of children with liver disease in the UK. To achieve this aim Dr Baker is organising a series of meetings around the country to which as many people (stakeholders) who have an interest in the care of children and families with a liver disease are invited to take part. To date, two successful and thought provoking meetings have been held; one in Crieff, Scotland and the other in Birmingham.
Facilitated by Dr Baker and Margaret Wright, the meetings use a technique called Appreciative Inquiry to help people focus on and share the best aspects of the experiences they have had with the service. From voicing the positive experiences the group moves onto visualising the sort of managed clinical network they would like. Through successive meetings a complete picture of a future structure and needs can be developed and eventually put forward to bodies that can influence or make change happen.
The meetings may also help influence change in the individuals who take part. Often this is an essential part of achieving the overall goal. Key to the meeting is talking, sharing and listening. In doing so, individuals start to appreciate the viewpoints and needs of others and can use this information to influence their own approach and practice. The technique is enormously powerful and can lead to change happening in a positive way with all the stakeholders feeling involved and signed up to the new pathway discerned.
