The recent general election has seen calls for parity of mental health within the health care system, and this will require innovative approaches to involving people with mental health issues and their carers in service delivery says Joanne Tippett, as part of Mental Health Awareness Week.
A participant with dementia in a recent event hosted by the Dementia Action Alliance North West (DAA NW) said one of the things they hate to hear is ‘Don’t forget!’. It is vitally important, however, that we don’t forget to ask people with dementia and their carers about the design and delivery of services that are meant to help them, and we need to do this in a way that actually helps us to hear their voices.
The session was run using Ketso – the toolkit for creative engagement developed here at the University of Manchester. Ketso is the first social science spinout company from ESRC funded research in the UK. I believe tools and approaches like Ketso have a vital role to play in engaging people to work together effectively towards solving the many challenges we face as a society, and are therefore of direct relevance to policy makers. The context of this piece is health and social care – particularly mental health, and specifically dementia support. But the principles, challenges and opportunities are similar across the whole landscape of service design and delivery.
We know we need to radically rethink how we deliver our health and social care services, if we are to improve the quality of the care people are receiving at the same time as doing more with fewer resources. Co-production can seem like the latest buzzword, but the core idea—that of working together to develop new approaches and integrating the ideas of service users in the very process of design (as opposed to as an add-on after the fact)—is gaining traction. When thinking of co-production, it is important to ask searching questions around who is involved, and why… but it is equally important to ask how people are involved – especially when working with vulnerable people. The medium for communication and the way people are invited to contribute ideas can have a profound effect on their ability to surface and articulate the key issues, and to other’s ability to actually hear their voices.
“Massively inclusive, empowering and enabling,” is how Emma Leigh MBE, Clinical Projects Manager at the NHS Eastern Cheshire Clinical Commissioning Group, recently described Ketso, and this is exactly the kind of engagement that can potentially have a meaningful impact. The workshop at the DAA NW learning event aimed to find out participants’ thoughts on what is helpful and unhelpful in supporting people to live well with dementia, and to share ideas about what could be done better. The results will be shared with the Dementia Action Alliance and their partners and the NHS Strategic Clinical Networks for Greater Manchester, Lancashire and South Cumbria.
The report from this workshop has been published during Mental Health Awareness Week (May 11 – 17, 2015), and it contains interesting insights, which may not have been possible without providing an engaging platform for all to have a voice. Gathering people’s ideas is important and valuable, and of course this is just the beginning: the real questions are about what happens next? What do we do with all this information? How can we interpret it – make sense of it – and really use it to inform and shape our decisions?
Here is an example of some basic analysis of data from this report. A major theme to emerge from looking at all of the ideas shared by participants was that of desired qualities of support and services for people with dementia and their carers. Within this broad theme, the ideas were clustered to reveal sub themes as presented in the chart below:
This immediately gives an indication of the issues at the forefront of participants’ minds. Joined-up collaboration and partnership had the highest number of ideas – and most of these ideas were suggestions and ideas for how things could be different. Some of these ideas may be practical and feasible, some may be ‘stepping stones’ towards improved and refined ideas, and in any case they are all certainly an invaluable resource for increasing service providers’ understanding of the perspectives and wishes of service users.
Next were ideas about the availability and extent of services offered, with a larger proportion of grey (‘what is unhelpful’) observations shared – a reflection perhaps of the current climate? Contrast this with the next cluster of ideas – on the theme of co-production. Far fewer negative comments, and a wealth of possibilities were shared in this area. Clearly there was a strong desire amongst the participants at this event to be more involved in the shaping of services!
Note the relatively high proportion of grey (unhelpful) ideas on the theme of services that are ‘consistent and reliable’ – clearly a good number of people present had concerns about this, but also some ideas about what to do about it. Contrast that with ‘responsive & flexible’ – the lack of new ideas generated for how this could be different could suggest a fruitful area for more focused thought and engagement? And of course, this brief discussion is just from looking at an overview of one of the three main themes, and not at the actual ideas themselves, which are the important thing to look at for any serious analysis.
1545 ideas were recorded in the one hour-long workshop. It is not enough to give people the means to contribute ideas (as important as it is to make sure you can actually hear all the voices in the room!), it is also important to put in the necessary resources to analyse and interrogate the data to allow key issues to be found. Even this is just the beginning. How can the ideas be taken forward and built upon by future participants at other events in other places, as well as by service providers and policy makers? How do we really join things up?
Perhaps we need a Ketso workshop to explore these issues? The full report can be read here.
You can see more examples of Ketso in the following contexts at these links:
Stakeholder engagement and work with vulnerable groups, such as refugees