In many social care publications, papers or policies the terms ‘Person with lived experience’ or ‘experts by experience’ appear with increasing regularity. The recognition that we all gain expertise through every interaction we have with the world and the people around us is what informs the choices and decisions we make. We are all experts it’s just our circumstances and ‘lived experiences’ are different.
What is frustrating is when our expertise is not recognised, when our choices are limited or worse ignored. When things happen to us not because we want it to but because someone else thinks they know best, that they are the experts in how we should live.
The latter happens regularly in social care settings. Decisions are made by others with minimal expert guidance from the very person it impacts on. When this happens the quality of life is diminished.
Camphill Village Trust (CVT) is a national charity that supports around 550 adults with learning disabilities, it is committed to ensuring that people supported are the experts in their own lives. In 2015, we introduced the ‘Quality of Life’(QOL) review approach. Led by people with learning disabilities. The long-term aims were to
- Achieve better outcomes for people as a direct result of recognising the experiences of each person and encouraging that to be the key driver for change.
- Supporting people to develop the skills and confidence they may need to take ownership and responsibility for what they would like to achieve.
- People with disabilities having real influence in their community, across the charity and with their peers.
At the centre of the Quality of Life review approach are the standards. These are a set of statements that indicate some of the things that most of us take for granted in our daily lives, the things we view as ‘ordinary’. With the support of Changing our Lives we train people with ‘lived experience’ to understand these standards and develop questioning, listening and observational skills. They then spend a couple of days with someone from a different area or community immersing themselves into their lives, discovering what is important to them, looking at how they are supported; and where appropriate, making recommendations that aim to enhance their Quality of Life.
The reviewers produce a report that summarises their findings, makes recommendations and where needed actions with outcome indicators. These are not only shared with the person they spent time with but, with consent, are also shared with their support network thereby driving up quality standards across the charity. The reviewers all have one thing in common, they are passionate that disabled people should be afforded the same opportunities as all in society.
Some outcomes as a result of their QOL reviews so far include development of independent living accommodation, improved tenancy rights, access to employment opportunities, changes to support delivery, improved access to transport and not least started new friendships and relationships.
The work of the reviewers is best summarised by Jayne Leeson (MBE) Chief Executive of Changing Our Lives.
“The Camphill Village Trust Quality of Lives reviewers take a rights based approach to its work, arguing all disabled people have a right to an ‘ordinary life’, where they decide who supports them, where they live, who they live with… in short how they live their life. The Quality of Life reviewers are championing these rights, exposing myths and in many cases finding some of the most genuine and positive interactions between people with learning disabilities and staff that we have seen in a long time. They really are making a difference!”