The Power of Lived Experience

Let’s Repower Scotland’s Health and Wellbeing

Sections in this page

In health and social care ‘lived experience’ refers to the valuable experience that is gained by people who are disabled, live with a long term condition or are unpaid carers. The sharing of lived experience can help to change perceptions by giving hope to others in similar circumstances and providing ideas of what can change. Changing hearts and minds is the first step to improving practice.

Most health and social care professionals also have personal experience of using a service for themselves or for their family. Lived experience therefore, includes the reflections and observations, from both users and providers, of how support and care services really work for people.

Lived experience is powerful because if offers insights that other evidence cannot provide. It is equal in value to the knowledge, evidence and information we now use to inform the way we design and evaluate services.

It can be empowering to know you have made a difference by telling your story. However learning from lived experience goes much further than this. The power of lived experience is released when people are engaged as equal partners in service design, delivery and improvement.

This resource describes how lived experience can drive local improvement.

Support people to use their experience for change

People need opportunities to share their experience and support to build the confidence and capacity to do so. People Powered Health and Wellbeing set up a Reference Group of people who used services and unpaid carers to influence the programme. They were facilitated and supported to share their experiences and encouraged to take up opportunities for influence and learning in areas that mattered to them. They said that they gained confidence from each other and from hearing about the different challenges that others faced.

Fiona Donnelly, People Powered Health and Wellbeing Reference Group member

“We think differently, challenge each other, bring so much information.”

 

Linda Jane McLean, People Powered Health and Wellbeing Reference Group member

“I spent a lot of time over the years really doing nothing but going over the same old problem, so I really didn’t want to do it again, but I feel that this [the People Powered Health and Wellbeing reference group] has become more action focused and has the attention of some people with clout.”

Some people have sensory, learning, cognitive or communication needs that require support to enable them to contribute to a discussion or workshop. Some may also require support to relieve them of their caring responsibilities in order to participate.

Carmel Young, People Powered Health and Wellbeing Reference Group member on her participation in an action research project

“I would never have imagined doing an academic piece and my problems with dyslexia have not hampered my participation with all the support that I have been given.”

Sharing a story can be both therapeutic for the individual and inspiring for others facing a similar situation.

Ian, participant in the InS:PIRE programme, Glasgow Royal Infirmary, NHS Greater Glasgow and Clyde

“The team had brought back a guy called Alex who had gone through quite a traumatic situation. To see how he had recovered and the guy’s back running half marathons and what have you. Just to be able to say ‘I could get back like that!’ The guy was first class, basically he let you see that there was a life to live.”

Really listen to people

Personal stories must be heard, listened to, shared, reflected on and used to prompt changes in practice. People should be offered feedback on how their lived experience has made a difference to the design and delivery of support and care services. People get involved because they want to make a real difference and see their experience used to change things for other people.

 

Participant in People Powered Health and Wellbeing Reference Group workshop at the Scottish Co-production Conference

“Enjoyed learning about the innovative ideas and control taken by people with lived experience. Showing that they are equal and valuable partners to the professionals.”

 

 

Use different methods to gather lived experience

Lived experience can be gathered simply and creatively with a range of media and approaches – each can be tailored to the individual. These include capturing written and digital narratives, co-design, peer support, asset mapping, personal outcomes planning and self management support. For a definition of terms used go to: http://pphw.alliance-scotland.org.uk/glossary/

Real life stories from real people expand the evidence base – they tell us what is important and what works. And people are not just sources of stories – they can be active creators of accounts of their own and other people’s experiences, for example as peer researchers. You don’t need to be an academic to contribute to action research.

Ailsa Stewart, University of Strathclyde

“For me one of the great myths in academia is that only academics can do research and it is absolutely not true.”

Embed lived experience in the everyday

When you embed lived experience in work every day it helps to really shift the power. The experience of people is a vast and largely untapped resource that will make a difference when we place it at the heart of health and care. Even people ready to embrace lived experience know they need to do more to weave it through their everyday health and care practice.
Louise Christie, Scottish Recovery Network

“Achieving that genuine two-way dialogue between practitioners and people using services needs more than enthusiasm – it needs some changes to the way services are designed and delivered. Ensuring lived experience is at the heart of all we do is a fundamental change for many services … and we need to be bold if we are to achieve this.”

Rediscover your humanity

Create a distinction between the personal and the professional and care can become dehumanised. It is a fundamental human right to be heard and valued. Sharing lived experience connects us with each other and with the compassion at the heart of professional values. Spend more time listening to stories and giving these more importance in the way that you design and develop support and services. Ask yourself what you will think or do differently after listening to a story.
Kerry Musselbrook, Project Lead for Keeping It Personal from IRISS

“If we aim to provide more person-centred care and support and continually learn and improve, the power of personal stories shouldn’t be overlooked. Stories make no apologies for being subjective. That’s their power. They connect us to one another.”

Delegate at workshop on ‘Community Connectedness; Assets Powering Practice for Health and Wellbeing at the Gathering, Feb 2015

“What will I do differently after this workshop? I will provide evidence to people by either introducing them to people who were once in their shoes or by talking about inspiring stories.”

 

 

Sources of inspiration:

People Powered Health and Wellbeing ‘Shifting the Balance of Power’. An ALLIANCE programme co-produced by members and stakeholders.

Health and Social Care Alliance Scotland
349 Bath Street
Glasgow G2 4AA
Tel 0141 404 0231

Twitter logo@alliancescot
info@alliance-scotland.org.uk
www.alliance-scotland.org.uk Registered in Scotland
No. 307731 Charity number SC037475

The ALLIANCE is supported by a grant from the Scottish Government