Kerry (Project Lead) reflects here about issues in the design of KiP.
Time and trust
Taking time to have shared conversations about what you want to achieve; resisting the urge to rush to action before knowing why, is important. Slowing down to speed up! Maybe it’s also about resisting the urge to offer the same well-trodden responses or solutions from a familiar menu without exploring new solutions together. Give yourself time and jack the traditional format of 1.5 hour meetings with agendas and plans set by few and offered for ratification as a supposed inclusive approach. Our days lasted from 10am – 3.30pm, with lunch and plenty of breaks.
Building trust and relationships takes time, but time well-spent to build a community of learners and do-ers. This relates to my thoughts on ‘the importance of beginnings.’ (For the record, ‘trust relates to being able to trust yourself to contribute as well as trusting others. This is about confidence and good respectful listening. It’s also trusting that power-sharing is better than not! This is what we hoped to show!
Time and commitment/readiness to trying out new ways of working is key. It will remain a challenge, however, especially after the end of projects which bring these together.
Thinking about time and timings, we also had to consider WHEN it was going to work to bring people together. There may be tensions between when it is best for practitioners a when it is best for people with lived experience- and how long and how frequently your sessions should happen. It’s best to ASK people and be prepared to adapt this – but you may need to come to the best compromise you can find. Interestingly, some group members were unhappy with being asked to do ‘homework’ in between sessions (individually and with others in the group) while others weren’t. This related to both capacity and ‘boundaries.’ It may be that asking people to volunteer or offer is a better approach?
The importance of beginnings
At any first meeting, people usually feel a bit apprehensive, shy and we’d like to think hopeful or excited about what they might achieve together. The importance of beginnings should never be underestimated in my view, which is why an ice-breaker is so important. It’s a tool to build a community of learners and improvers who will start to get to know and trust one other. From this we anticipate they will support and help one other, helping to break down any ‘them and us’ mentality. Consequently, I would suggest that ice breakers in sessions are never skipped due to feeling short of time unless people already know each other well. I believe that ice-breaker activities are vital for creating the conditions for effective co-production and for person-centred practice. At a practical level, it’s also about helping people ‘arrive’ in a session, it can support people to find ways to leave the stress of parking cars or thinking about emails and connect to the moment.
Your place or mine? It can be tempting to hold meetings at a partner’s workplace. It’s cost-effective, easy to arrange and convenient – especially if it’s your own place. However, a neutral space may be more conducive to sharing and shifting perspectives for mutually beneficial outcomes. This isn’t about one side winning or losing or protecting territory; conversations should be entered into as an opportunity and not a threat. The environment in which these conversations take place, a ‘neutral’ venue, has a part to play in setting the scene. Other important aspects include: good natural light and ventilation, flexible space (including furniture to re-arrange as needed), easy access and good parking or transport links. Phew! So after all of that we needed to ask our partners if they knew of venues which fitted these criteria.
In North Lanarkshire we worked in the GLO Centre and the South Dalziel Studios. We had initially booked the GLO Centre for all of the sessions, however, we had to move on because the space needed to be used for an inquiry.
The space we used at GLO was upstairs and this caused issues for some of the people with lived experience. The stairs were too steep, so the move to South Dalziel proved a positive one in terms of our ability to ensure that people were as physically comfortable as possible.
The room we used later on in the process was also a lot cosier (GLO was very large) and people noted that this helped the group bond.
North West Glasgow
In North West Glasgow we worked in Partick in the Whiteinch Community Centre. The space worked for us, but presented different challenges in that there was less space than we’d have liked. For this reason we hired a conference style room and a small room for break out sessions or when people needed a break. However, we tried to cut back on moving around too much, due to the potentially confusing/distressing nature of continued change of location for people who have dementia. People in the group also requested to not be split up too much as they liked working in a large group.
We had to think carefully about noise levels in small spaces as people with dementia can find certain noise levels distressing, distracting and disorientating. I like to remember that the words noise and annoyance have similar origins! This is pointed out by John Picker in his book ‘Victorian Soundscapes (2003): “…[noise] annoys because it doesn’t fit: it jars, disrupts, upsets. And it upsets because it can’t be understood….” One doesn’t need to have dementia to appreciate this point. Therefore we had a number of small group discussions that optimise sharing, reduce noise levels and make best use of the space.
Paying participants, recognising contribution
At IRISS we have a policy about paying people who collaborate with us in recognition of their time and contributions. For this reason we paid people with lived experience and who were supporting people with lived experience. We pay people £150 per day, pro rata. As the KiP sessions are not a full day, this meant that people were paid £100 for a 10am-3.30pm session, plus any travel expenses that they had incurred. So, just as professionals are paid for their time, so too in this project, are people with dementia, heart failure and their unpaid carers.
Gaining informed consent
All participants were provided with information sheets about KiP and the projects’ aims and objectives (KiP: dementia personal information sheet / KiP: heart failure personal information sheet). We talked through the information on the sheet before asking people to complete a consent form. In cases where people had difficulty reading or making sense of the information, we took time to sit down with the individual or couple and go through the form. It was important to ensure that everyone understood what would be involved and was happy about being part of the project.
All participants were asked to sign a consent form stating that they understood their involvement in the project and allowing us to use, including posting online, photographs and video we may take during the project.
Letting things happen…
Traditional project management approaches often START with an end output or product, and works back from this to devise an action plan. This does not happen in co-production. Co-production gives the group members or partners the power to drive forward and agree what improvements or initiatives will happen AFTER conversations have happened. This means individual group members (and facilitators) can’t predict WHAT outputs and impacts they wish to achieve as a priority at the outset. It might not be the ideas that individual group members came into the project with.
This level of uncertainty can make some people very uncomfortable and wonder what they are going to get out if it? They need to hang on in there and not push people to action too soon. I guess the challenge is trying to keep people motivated through this uncertainty and when they are still forming as a group. It’s helping them trust the process and judging when, as a facilitator, you need to move the group beyond from sharing experiences and perspectives to implications for services, supports and action.
The project is as much about developing peoples’ capacities – and giving them the opportunity to try out new ways of working- as it is to achieve specific local improvements.
WHO to involve?
We worked with the organisation/s who had applied to be part of KiP to identify and recruit should join the group. We purposefully tried to balance the number of people with lived experience and professionals in the group. This was to help balance the power. We also wanted people at different job levels, including those in key roles who could help make things happen or make connections to others who could. If you read the Evaluation Report (3.2.5) you’ll see the difficulties we ran into with the heart failure group. We were unable to recruit a GP, largely to do with the fact that their time would need to be back filled. We therefore had to find ways to go to them which was not as effective. Certainly it slowed down progress and didn’t involve them as equal partners.
While co-production encourages everyone to show leadership in terms of making contributions and sharing their assets, it’s also good to have people up for taking the lead on certain things to galvanise a group. We need both leaders and followers and individuals might be both at different times.
We tried really hard to avoid jargon throughout the project as best we could. We had ‘red cards’ for these (although seldom used) and a ‘parking lot’ to highlight any words we felt were problematic and ‘didn’t like.’ This included co-production, person-centred care and positive risk taking! We also asked our groups what kind of communication they preferred between sessions – for some it was email; others letters, postcards and phone calls.
There were added complexities around communication, however.
- We had two months in between sessions and in one group, people with memory problems! We started each session by re-capping on the last, checking in with people and setting out what we wanted to get out of the day.
- We were building the group as well as modelling and building our understanding of co-production and person-centred care is.
- Some were anxious to know what we were going to do early on ahead of conversations happening and lost site of the ‘purpose’ at times. This was as much about experiencing new ways of working and building capacity as it was using the project to deliver real improvements locally. On reflection, perhaps this first aspect could have been given greater emphasis in our communication rather than being seen as more of a ‘vehicle.’
We build reflection and assessment into each session and did this as a group. Again, on reflection, we may have missed an opportunity to get more individual feedback between sessions to ‘out’ any uncertainty and discomfort on anything, especially in the initial sessions before people felt more purposeful.
Improvement methodology and co-production?
We began by wondering if improvement methodology was the ‘best fit’ for this project in the context of person-centred care and co-production?
It seemed that the focus of improvement methodology in health service has been on the point of care eg when a patient and health professional meet/interact and on ‘quick wins’ that the practitioner can deliver ‘tomorrow’ (or next day or day after). It fits within dialogues about ‘leadership at ever level’ – so what you can do (not what you can’t) and practitioners, wherever they are in the system, identifying improvements ad taking the initiative on this.
In this scenario, tests of change are easy/easier for practitioners to trial with one person, and repeat the next and next again day with different patients say. You can do 5 tests in a week! Most emphasis (as highlighted at the National Learning events) has been on changes to the behaviour of practitioners – something as simple as introducing yourself by name, sitting alongside or asking key questions about what matters to someone as part of a reliable procedure.
The other thing that’s been emphasised is patient experience feedback and/or big data/real-time feedback with systems to support this to drive improvement and change forward. But again, this seems to be about measuring something at a point in time, a snapshot.
Applying this to more collective responses/ peer-supported action to providing person-centred care such as setting up carers groups or peer support groups needs a slightly different approach. An appreciation of the following through our experiences of Keeping it Personal might help:
- Intervals (or opportunities for tests of change with feedback as part of a learning loop) are further apart than tests that are tried out with one or two people and then repeated the next day with a few more. The dementia and carers cafes set up by the carers meet once a month.
- The cafes involve a group of people over time. This includes the core group who led in setting up and delivering the cafes in the first place, and new people joining. The group is a bit different at each meeting. As far as ‘tests of change’ go, we might consider we will need to consider some of the same challenges faced in longitudinal research such as continuity of response over time/attrition.
- Also, the cafes involved people ‘doing it for themselves.’ As such, the people at the cafes are both the evaluators and subjects in this (as well as new members who join).
- Perhaps, most significantly for me, is that we are following the ‘same’ peoples’ experiences though – rather than taking a snapshot of an individual’s experience of a service at ‘a snapshot in time’. It is also more holistic, recognising the importance of peoples’ home lives and communities as part of our definition and understanding of person-centred care – as well as being something that you can be involved in providing yourself as a patient/service user or carer. If we are taking a more holistic approach we also need to recognise that peoples’ health and wellbeing can change – because of or quite independent of our improvement or initiative.
- Improvement methodology to my mind, doesn’t exclude more qualitative approaches to gathering data on what impact it has had on peoples’ lives in terms of their health and wellbeing – so this does not seem to be a reason for saying it isn’t appropriate in this respect. Why can’t group members co-produce these indicators, based on the notion that ‘what matters to them’ is likely to be important to any new members joining the group?
These reflections are really about how the improvement model works with our ambitions and philosophy of working in Keeping it Personal. Other co-production projects, may well bring other perspectives?
See others thoughts about this here.