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.

 

Having a different conversation

Posted by Jaimee

The personalisation of social care services is more than just personal budgets.

That is, it’s more than just handing over money to a person so they can choose how they want to be supported.

We would argue that personalisation is about seeing people as individuals and equal partners in making decisions about care and support.

It’s about treating people (and families and carers) with respect.

It’s about not making assumptions about who people are and what they might want to do based on labels or lifestyles.

And, if done well, it can work with everyone, even older people – despite what the headlines might suggest.

Take Arthur’s story for example. At 86, he had been living in his own flat for 35 years and was supported by the local domiciliary care services. But small things were turning into big issues, which risked him being “put into a home” – something he was “terrified of”. Arthur wasn’t having his meals served “piping hot”, meaning he was throwing his food into the garden. This created problems with his neighbours and worse, a rat infestation. His poor eyesight meant he would hit out at staff that came to get him up in the morning because he thought they were burglars. And when he couldn’t find the £10 note he always kept in his pocket because staff had put it away for safekeeping, he would get distressed and struggle on his hands and knees for hours looking for it.

Gill, a person-centred planning coordinator, spent an hour talking with Arthur to find out about his past, what made a good or bad day for him, how he liked to be supported and what kind of routine he likes. She used this information with his supporters to find out what was working and not working about his care and what needed to be done differently.

Now Arthur’s meals are prepared and frozen by his daughter so that care staff can just heat them up until piping hot and spend their time talking with him while he eats. His supporters will always call out to him from the bedroom door to let him know they have arrived to help him get out of bed, and they will never take the £10 from his pocket. He is now eating well, has company during the day and no longer any problems with his neighbours or rats.

At the most basic level, personalisation is about thinking differently and having different conversations. Small but significant changes meant Arthur’s life improved and that he was able to stay at home longer. These different ways of thinking can be grouped under the heading of person-centred practices.

“When people not used to being listened to are heard by people not used to listening, real change is made.”

Then there’s Florrie, a woman without any family, who lived in residential care and was very isolated from staff and other residents. When the people who supported her were encouraged to use person-centred thinking tools to have different conversations, including finding out more of Florrie’s history, they found she was a passionate cook and a former housekeeper. Staff could then increasingly involve her in life at the care home. Florrie became more than just another person to feed and wash. Relationships blossomed so much that Florrie sewed patchwork blankets for the staff’s grandchildren.

There’s also the story of Sam, an older man living in residential care with no family. He had lost touch with friends, but through using person-centred practice, the staff supporting him found he was a keen lawn bowler. They matched a staff member at the home with a similar interest and helped him reconnect with his mates at his old bowling club. While he can no longer bowl, he now writes their club’s newsletter and is enjoying the reunion with his old friends.

Simple tools created improved outcomes for people. And this is where we hope we can help.

As the debate on personalisation of health and social care in England continues, me and Helen will aim to show through as many real life examples as possible, that by doing things a little differently, and with determination and patience, personalisation can work for all people at every stage of their life.

Person-centred practice helps people be heard. It finds solutions that changes people’s lives, while also changing the culture of organisations that provide care and support services.

This isn’t something we’re doing because the government says that there is a target to meet 100% personal budgets by 2013. Whether there is a target or not is irrelevant. It is because, from a human perspective, this is the right thing to do.

When faced with a barrage of negativity and challenges, we try to remember that delivering personalisation through person-centred practice supports the work of the disabled people’s movement – who have fought and continue to fight for the right to live full and independent lives.

Person-centred practice is a way of ensuring people, including older people, are treated with dignity and respect. The way we would like our parents and grandparents to be treated and the way we would expect ourselves to be treated when it’s our turn to be labeled “an older person”.

To deliver personalisation, you need to know what is important to a person, how to best support them, the way they communicate and make decisions, and what is working and not working about the way they are receiving care and support.

Person-centred practice enables you to have that conversation. As we hope to show you in our posts over the next few weeks and months.