Co-production: moving beyond tokenistic consultation to real change

Posted by Helen

Last week I was working with colleagues to find out what we’ve learned from testing the forthcoming ‘Progress for Providers’ tool Checking your progress in delivering personalised support for people living with dementia.

My colleague Gill told me how some people found the section on choice and decision-making particularly challenging. I found this interesting because at the Guardian live debate on dementia last week, personalisation, choice and control barely got a mention. Yet this is the essence of personalisation in health & social care, and we have to make this work with people living with dementia, and with everyone.

In day–to-day life, when you go to the hairdresser or barber, you expect to explain exactly what you want, and for this to be delivered. Some people may also be interested in being part of a focus group to look at the ‘customer experience’ at that hairdressers, or be interested in testing out a new range of hair products, or being a model for new trainees. Most people will just be content to get their haircut in the way that they want to.

Involvement for ‘service-users’ in organisations is no different. Each individual must be central to decisions about their own lives, and some people will want to be more involved in how the service is organised and developed.

We know that to deliver personalisation and for people to have choice and control in their lives, it requires going far beyond ‘consultation’ and ‘involving people’ and focusing on ‘co-production’.  Most of the talk about co-production still focuses on people’s involvement in service design, development or evaluation.

However, I don’t think that there is enough focus on what co-production means in people’s individual lives. That is, co-producing decisions about people’s individual service, and what that should look like.

To do this requires people to have comprehensive and clear information about what is possible and what is available to them. We (those of us supporting individuals in whatever role we play) need to know how that person makes decisions and communicates them.   Where people do not have capacity to make decisions themselves, we must ensure advocacy and decision-making always remains in the best interest of the individual.

Consider Jenny’s story. She has dementia and has lived in a residential home for six years. She wandered around the home day and night, hitting out at staff members, refusing medication and never communicated verbally.

Staff committed to spending more time with Jenny to observe her in the home so they could find ways to understand her. One of the many things they learnt was that touching and feeling things really matters to Jenny. She would often carry towels around with her and has her own basket of different fabrics in it. This helped staff to understand why it was important to Jenny that she holds a piece of ribbon and runs it through her fingers when staff assisted her in getting ready.

They also developed a communications chart for Jenny–they discovered that if she puts clothing into her mouth, she is thirsty, so staff should offer her a drink and in her favourite mug.  When she begins to shout when using the lift, they found it was the gap between the floor and the lift that made her anxious, so staff need to reassure her gently and link arms with her. Working with Jenny to find out what is important to her and how she communicates helped staff coproduce the way she is supported.

Person-centred practices have an important role here. They contribute to people having choice and control over decisions about their life, as well as contributing to service change.

Person-centred practices	How it can contribute to people having choice and control over decisions about their life, and contribute to service change?
Good days and bad days	This person-centred thinking tool can help people have more control over their days. Knowing what a good day is like and what a bad day is like, tells you what the person wants their days to be like.
Relationship circles	A relationship circle tells you who people have in their life. You can then have conversations about what this means to the person in relation to their life and support. Do they want to see or be in touch with people more? Do they want more people in their life? Are there people who they want to have a role in making decisions with them, for example, through a circle of support?
Communication charts	We cannot enable people to have choice and control in their life unless we know how people communicate. This applies to everyone.
Decision-making	This is the most direct person-centred thinking tool for people to have more choice and control in their day to day life.
Matching	One of the most significant choices someone makes is who they want to support them, or who, if anyone, they want to live with. This person-centred thinking tool helps to get the best matches.
Person-centred reviews	People have more choice and control in their lives through having opportunities to review what is working and not working for them and thinking together about what needs to change to keep and build on what is working and change what is not working. In a person-centred review people can talk about what they want in the future, what outcomes they want in their live over the next year, so that they are directing and designing their life and service.
Person-centred recruitment	Making sure that the person is at the centre of decision making about selecting and recruiting their staff.

These tools aren’t complicated – just a way to enable people who support others to think differently and have a different conversation.  Importantly, person-centred approaches are a way for organisations to move beyond ‘tokenistic’ consultation with individuals on service design, and provide real empowerment to the people who use services.  By working in this way, we will start to see changes and improvements to the way in which people – including those with dementia – experience care and support.