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An Introductory Workshop on Experience-Based Co-Design for Mental Health Services

UoB, 14/11/14, Glenn Robert, Neil Springham, Lizzie Newton, Zoe Boden, Michael Larkin
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Michael Larkin

on 14 November 2014

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Transcript of An Introductory Workshop on Experience-Based Co-Design for Mental Health Services

An Introductory Workshop on
Experience-Based Co-Design for Mental Health Services


• Can it be dovetailed/fused with evidence-based practice and practice-based evidence?
• Can it work alongside NICE guidance?
• Can formal research findings on, say, therapeutic environments be ‘fed in’?
• Can it be evaluated across contexts? (Is anyone keeping a database?)
• Can it be used to design packages for non-local change (e.g. intervention toolkits, service delivery templates, resourcing specfications? Would it work as a means of ‘intervention development?’
• How we can overcome the obstacles for implementation?
• What would be required to get genuine top-down support for this sort of bottom-up redesign?
• What would the service-terrain look like if we could?
• Could it be a tool for meeting the complex needs of service design and quality, in context of austerity demands on health economies – see Gilburt et al report for Kings Fund [2014]
• Can we set up a network?


Convert to touchpoints
We started with a small number of detailed accounts
Formal research phase:
• Research ethical review for data collection and analysis – ensuring data protection, informed consent, confidentiality and support issues considered.
• No ethical review for EBD phase – but carried same principles through.
• Audio not video.
• High quality data; rigorous & consistent analysis

Touchpoint development:
Independent researcher (Jo Taylor) identified the touchpoints from the analyses

Feedback groups:
Touchpoints were used as the basis for feedback meetings with the stakeholder groups (separately)
At each feedback group, participants sorted and prioritised the touchpoints.

ML reviewed these lists of priorities to identify areas of consensus for the co-design event working groups.


Lots of consensus at feedback stage [phew] and lots of perspective taking [pleasant surprise].

Six key areas were consistently identified as priorities & taken forward to the action-planning event:
1. Pathways in and out
2. Providing staff with a rewarding and well-supported role
3. Communicating with families and service-users
4. Recovery-focused practice
5. Creating a positive environment for everyone in it
6. Recognising and sharing good practice across professions and services

Preparation for CDE –
Made videos at this point - illustrative, edited.
Lots of work at feedback group stage to make people feel involved – helped us to get validation for our findings, to make sure we hadn’t missed anything, and to build consensus; identify people for co-design event [CDE]

Preparation in thinking about CDE generally: setting tone, managing mood and providing support on the day.


What did we learn?
Positives –
we prepared SUs and families and staff very carefully re: what to expect, and we had various support systems in place. The event went well. Stakeholders were respectful for one another and collaborative. Lots of energy and enthusiasm – very powerful response to the carefully made video clips which we showed – feedback on event was excellent. Lots of people volunteered to be on steering group.

Negatives –
‘communication’ and ‘recovery-focused practice’ groups struggled with their remits. Perhaps the two most fundamental issues facing the service – too much to think about? Didn’t know where to start, despite our preparation?

At the time, blamed ourselves for not getting more involved in discussions at event. Later – noted that other groups picked up issues related to these themes in less direct ways, and produced relevant actions plans.


Glenn Robert, Neil Springham, Lizzie Newton,
Zoe Boden, Michael Larkin.

[introductions, aims]
web: ebcdmh.wordpress.com
twitter: @ebcd_mh

1. An introduction to EBCD (Glenn) – what is it? [yellow notes]
2. Example of aims & scope, context & expectations of a mental health project (Neil, Lizzie) – what to expect? [yellow notes]
3. Example of data collection, data analysis, & feedback phase plans (Michael, Neil) – how to prepare? [yellow notes]
4. The co-design event (Glenn, Neil, Michael & Lizzie) – planning it, and running it. [yellow notes]
5. Implementation and evaluation (Glenn, Zoe) – understanding change [yellow notes]
1-2 formal complaints prior to EBCD
Zero Formal complaints for 20 months
Mystery shopper: ResearchNet had son admitted = positive experience
Staff very proud of EBCD
However, results reliant on regular ResearchNet – ward contact

Outcome

Daily patient experience feedback group
Welcome to ward DVD
Face down Restraint DVD

*But main intervention was meeting service users well and working with them

Co-Design Intervention*

Neil Springham

Co-Design Event

High levels of fear “what if I have to go back?”
Many felt their story was valueless
ResearchNet controlled consent, data protection interviews & editing
ResearchNet was support for joint event

Videoing

Touch Points

Ward Process

Neil Springham

Data collection & Data feedback
Oxleas NHS Foundation Trust: South East London secondary mental health and learning disability

Art therapy: communication of mental states using art

Co-ordinate ResearchNet:
- a network of service users, carers and staff who meet together.
- groups of 10–12 people meet weekly

Report to patient experience


My role

Neil Springham

Experience Based Co-Design of an Acute Mental Health Ward

Aims & Scope

Service users

Managers

Clinical staff

Stakeholders

Oxleas
Warwickshire
Warwickshire
Oxleas
Warwickshire
Oxleas
General
Warwickshire
Overview
Discussion exercises
[green notes]

What issues might arise for EBCD projects in mental health settings?
Identifying a
potential project
Planning a project
Anticipating the
co-design event
Which EBCD procedures were important for mental health; which procedures had to be added for mental health
Novel

Rigour provided by 'formal' research phase - confidence in analysis.
Anonymity provided by use of anonymised transcripts rather than video.
Treating all three perspectives equally (young people, families, staff)?
Systematic identification of touchpoints?
Level of 'expectation' management?
Level of preparation for each group before co-design event; level of support available on the day.
Level of our involvement in post-event support for implementation.
'Manufacture' of video materials for co-design event.
No 'celebration' event [yet]?
Mixed EBD team – internal and external to organisation.

Standard

Seeing the stakeholder groups separately.
Generating consensus around what to change.
Collaborative approach to action-planning at event.
Use of video at event.
Deciding WHAT to change
Deciding HOW to change it
We started with a small number of detailed accounts
We generated strong consensus on 5-6 areas for development from over 150 people.
1. Pathways in and out
2. Providing staff with a rewarding and well-supported role
3. Communicating with families and service-users
4. Recovery-focused practice
5. Creating a positive environment for everyone in it
6. Recognising and sharing good practice across professions and services


[Analysis: Synthesis: Touchpoints]
50 people attended an action-planning event (representing service-users, families, hospital and community mental health staff, and managers). They worked together to develop clear plans to address the six prioritised areas for improvement. These are now being implemented and monitored by a steering group.


Outcomes
Planning groups
Detailed outline of our EBCD process
Context:
Early psychosis, young adults, and acute inpatient care.

First 5 years following a first episode of psychosis should be considered to be a ‘critical period’ predictive of longer term outcomes (Birchwood et al., 1997).

UK Early Intervention Services have been designed to treat young people (14-35) following a 1st episode of psychosis [offering intensive biological and psychosocial interventions and using youth-focused, assertive, flexible approach to engage with service-users]

Little is known about the impact of hospitalisation on young people with psychosis, or their relatives.

However, likely to be first experience of mental health unit , with older patients. Limited research suggests this can be frightening and traumatic.

Good practice during the hospitalisation process is likely to be important for good long-term engagement with young people and their relatives, and to the recovery of the young person. A positive and rewarding working environment is likely to facilitate this, and to retain the best staff.

Trust expressed an interest in inpatient research.
Data collection
Who did what
'Multiple-perspectival' or systemic design (Smith, Flowers, Larkin, 2009). Treat 'hospitalisation in early psychosis' as the phenomenon, and includes perspectives of key parties involved.
Sample
Design
Context:
inpatient units in one Midlands Trust; recently changed from local to centralised model; 'functionalised' service; limited psychology input.
Carers:
4 mothers and 2 fathers of Early Intervention service-users.
Staff:
9 inpatient nursing staff.
Service-users:
6 adults experiencing early psychosis.
Individual interviews with carers (GH); staff (JC); service-users (KF); supervision and triangulation (ML, EN).
Analysis
Interpretative phenomenological analysis
Synthesis
Credibility checking
Focused on experience. Line-by-line coding of data to capture claims and concerns of participant. Systematic exploration of patterns in those claims and concerns to produce themes.
Primary analysis conducted for their respective datasets by JC, KF, GH. Discussed in supervision with ML while developing. Discussed subsequently with EN for triangulation and credibility checking.
Categories from all three studies brought together and discussed to develop broader synthesis - organised around shared experience of uncertainty.
Identifying patterns in the priorities from the feedback groups

ISSUE

What you hope to address.
[What it is that you want to change, develop, evaluate, or protect].


ACTION

How you hope to address it.
[What you want to do. E.g. if you want to achieve y, in situation s, then something like x might help].


STEPS

Any anticipated problems, and how you hope to deal with them.
[E.g. first step may be to consult with x, and then seek approval from y].


WHO

Who will do it.
[Who will do it, and how will this be managed?
Who else needs to be involved?].


TIME

When it will be done by.
[A realistic target date].


AIM

What will be different when you’ve achieved this?



EVALUATION

How you will show that you’ve done it?
[How will we know it’s been done?
How will we know it has worked?]


NOTES
[Anything else we need to know?]
• What is it?
• How has it been used in physical health?
• Basic structure?

Discuss with your neighbour for 5 minutes, followed by group discussion led by Neil and Lizzie.


Reflection on discussion 1
Generic issues to address –
distrust;
trauma;
entrenchment;
expectations;
ethical issues - safety; whisteblowing; data protection
threats to confidentiality.
Some solutions
E.g.
place the project in an external/impartial position
have support in place
find out what could everybody thinks could be better
identify shared aims
set clear ground rules
allow veto or provide anonymity
ethical scrutiny
Agree an area in somebody’s service which could benefit from a co-production process.

Decide on the aim of the project .
Who would need to be involved?
What roles would they have?

You will be working on this example for the next three exercises.
Lizzie Newton

Experience Based Co-Design of an Inpatient care for young adults with first episode psychosis

Aims & Scope

Aims

Following synthesis of the findings and gaining consensus from key stakeholders, the EBCD project aimed to stimulate the following processes:

Hospitalisation can be frightening and disorientatin
g for young people

Young people and their families are not well prepared for what might happen, or for what
is
happening.
The process when it occurs is visible and stigmatising, and can be very distressing.
This is particularly salient because EI service-users are younger people, generally without a diagnosis, and are typically hospitalised for the first time during a crisis.

Collaboration and communication can sometimes be improved; families fall between the gap
s

The 'parent' role is still very active, but communication between services and carers/parents can be poor during hospitalisation.
Parents may feel a combination of relief, distress and guilt at the hospitalisation itself.
Parents are poorly prepared for the next steps in the process, feel excluded from decisions, and are understandably very worried about what will happen afterwards.
Anecdotally, inpatient and community services do not appear to collaborate or communicate with one another very effectively.

The hospital is 'not a therapeutic environmen
t'

Hospital provides respite and safety for families and young people.
Psychosocial support for inpatient staff is limited. Burnout may be a serious risk.
Staff are very committed, and want to have a therapeutic impact - particularly for young people.
Opportunities for therapeutic work are limited. Staff do not feel that the environment is 'therapeutic'.
Young people are frightened, irritated or bored; staff feel they are constantly dealing with crises.
Young people feel 'cared for,' but do not feel well prepared for moving on.
Overview of findings – Experiences of uncertainty
.




Thorough dissemination plan: DCP symposium first; then dissemination within Trust.
Dissemination stimulated interest in changing practice at Trust management level.

Conversion to action-research model - with some supporting funding from C&W and UoB - using 'experience-based design framework.'
National context
Nationally issue of inpatient units as unsatisfactory is widely recognised.

Approximately 120 inpatient suicides per year (Bowers et al., in press 2011).

Dinesh Bhugra prioritised inpatient psychiatric care as a target for his role as chair of the RC Psychiatrists (2008-2011).

Despite development of a number of valuable projects (draft NICE guidelines for service user experience; 'Do the right thing' guidance for inpatient care), Bhugra's outgoing statement suggested that overall, little has changed.
Getting EBCD off the ground
Decide for your proposed project:.

What would the data collection process involve?

How will data be analysed and by whom?

How will you feedback the results and generate areas for co-production?

Reflect on any issues/problems that may arise during the data collection & feedback phase.

What practical and ethical issues would there be and how might you solve these?

How will people be prepared to work together at the co-design event?
For your proposed project please imagine the co-design event, where might it be held, who will be invited and how?

What considerations will you need to make? What materials will you provide?

How might you measure and evaluate action plans and what might you need to do to help with their implementation ?
Feedback - 5 minutes!
Describe your:

aim
data collection
feedback ideas
co-design event
implementation & evaluation plans
Michael Larkin

Data collection, analysis & feedback
10. Role of relatives and friends in promoting recovery.

11. Link with Early Intervention, and other organisations.

12. Not enough therapeutic work, not enough staff-patient contact.

13. Lack of resources.

14. Lack of explanation / information for families and patients.

15. Families feel excluded.

16. Feeling unprepared for discharge.

17. Dealing with incidents.

18. Positive motivations to work with younger patients and make a difference.
1. Hospital is psychologically-containing; a safe place to be.

2. Hospital provides respite for patients and families.

3. Wards feel unsafe / frightening.

4. Wards are unpredictable / chaotic environments.

5. Wards are non-therapeutic environments.

6. Opportunities for patients to learn from each other.

7. Lack of formal support, clinical supervision, debriefing for staff.

8. Inadequate support for carers and families.

9. Service-users feel cared for by staff.

Summary of key touchpoints for feedback groups
Planning the co-design event
Practical issues

Identifying the champions and facilitators for each group
Balancing the membership of each group for the event

Venue (neutral territory, attractive and accessible)
Transport
Childcare
Cover for staff
Support arrangements for the day
Materials for the day
Lunch, refreshments, icebreaking
Attendance of supporting staff

Weather ...





Planning the co-design event
Implementation and evaluation
Coventry & Warwickshire project
Zoë Boden
bodenz@lsbu.ac.uk
Process
Feedback from the co-design event was very positive
Almost all groups had managed to find solutions to the priorities they were given
Solutions were written up into clear action plans
A steering group was convened from volunteers at the Co-design Event
We handed over the action plans to the Steering Group (March 2013)
Steering group over saw implementation
Research team undertook evaluation

1.
Pathways in and out

a. Develop a ‘patient journey’ flowchart.
2.
Providing staff with a rewarding and well-supported role

a. Establish protected time on wards, for staff-patient contact.
b. Demonstrate that supervision is embedded within the organisation to increase a supportive culture for staff.
3.
Communicating with families and service-users

a. Develop effective ways of sharing information with service-users and families (about what is happening re: admission, care, intervention, support and discharge).
b. Develop effective ways of involving service-users and families in decision-making (about what will happen re: admission, care, intervention, support and discharge).
4.
Recovery-focused practice
a. Establish a working group to identify a model of recovery that is transferable across services.
5.
Creating a positive environment for everyone in it
a. Consistent recreational and activity program.
b. Consistent welcome and information for patients and family members.
c. Improve signage, colour and access to designated spaces (e.g. quiet space) in the ward environment.
6.
Recognising and sharing good practice across professions and services
a. Create a regular Early Intervention slot in an existing inpatient meeting, and vice versa.

Action plans
No baseline data from before the project began
Audit methodology to evaluate the action plan outcomes

Evaluation
Audit one – 9 months post co-design event
Many action plans at baseline or with minimal progress
Audit two – planned for 12 months post co-design event
Postponed due to Trust level re-structuring and other management priorities
Extension to project negotiated
Audit two tentatively scheduled for 18-months post co-design
… but hasn’t been undertaken yet

Audit process
Challenges
Very slow progress after initial enthusiasm
Lack of commitment to a shared narrative from all stakeholders?
Steering group seemed frustrated, some were losing interest
Key figures and nominated ‘champions’ either left or were moved to other posts
Lack of strong SU and carer ownership (perhaps due to relatively late involvement)?
Disappointment – maybe we aimed too high?
Is it too much to expect EBCD participants to come up with solutions to complex problems?

Successes
‘Low hanging fruit’
Third of action plans completed
Ongoing commitment from many members of the steering group
After presenting at the Trust board meeting, a board member has been allocated to oversee implementation
Even small improvements in such a complex environment are worth celebrating

Glenn
Built on links between University and NHS supervisors.

Research phase achieved through supervision of three postgraduate DClinPsy trainees, working on related projects on the experience of hospitalisation in early psychosis.
Linked projects provided coherence and confidence
.
Full transcript