College of Lived Experience

College of Lived Experience - COLE  (Gayle’s understanding/ideas)

COLE is about raising the status and value of the individual and collective experience. It’s about those with experience contributing on an equal level with the ‘professional’ or academic body within health and community research and the development and delivery of services. 

COLE Is about empowering individuals who have experience of living with long term conditions, health issues and/or experiences of social care services. 

 It’s about building on the participation within social care services and communities and supporting individuals through their own personal development to be recognised at the experts through experience.

 COLE is about taking service user participation, the social model of disability, the disability movement to the next level. It builds on the growing body of expertise and influence of those with lived experience shaping services, and running services and being partners and experts in their own recovery.

 COLE would be developed and driven forward by those with lived experience, professional partners could be invited to join the ‘movement’ as deemed appropriate by those with lived experience.

 COLE’s  initial hub is in Powys, but open to expansion and input from across Wales, UK and internationally.

 Outcomes of COLE could include:

 A personal development programme, to develop individuals’ learning, development and skills at which ever level is appropriate from first steps to post graduate study and research.

 Those with lived experience entering and influencing the professional social care/community world as experts through experience and partners in the delivery of services. 

 Research around lived experience themes e.g mental health, community services, other specific conditions, disabilities.

 COLE could be a central hub, expert point of contact for organisations wanting to increase their participation and work towards true partnership with those with lived experience.

Gayle Hudson
15:38 on 14 June 2011

College of Lived Experience (COLE)

Perspectives on a Vision

The Vision

In recent years there has been a growing awareness of the value of personal stories, self-management, peer support, expertise by experience, and complementary approaches, what we now call ‘lived experience’), in the lives of people who have been affected by long term health factors or social disadvantage. COLE aspires to create a culture where equal value is given to this ‘expertise’ in the planning, design, delivery, monitoring, and evaluation of systems of ‘treatment’ and ‘support’.

Aims

COLE aims to create a pathway to employment for people who aspire to use their lived experience to open up new possibilities for individual people and to address institutional factors that impact upon their own ability to contribute as full citizens within their own communities.  

Criteria

The criteria for becoming involved in COLE include the ability to reflect upon personal learning from overcoming personal challenges, a recognition of wider collective learning from other peoples’ stories, and an understanding of how this may be valuable to other people.  The range of health and social fields includes any area where there is the potential for individuals to become stuck in a system governed by the medical model, social control or other professionally regulated body.

The Learning Culture

COLE recognises that there are two broad fields of learning:

1. Objective learning that aspires to be evidence based through research and clinical trials
2. Subjective learning that derives from personal stories and collective understandings that are culturally sensitive to the wider group as well as the individual.

In mental health we have witnessed a coming together of these two areas of learning within the development of recovery based practices.

The ideas for COLE have evolved in Powys over a number of years and links have been made with other people and organisations within the UK who have similar aspirations. Action research within the Powys Equals Partnership (2002 – 2005), funded by the European Social Fund Equals Community Initiative, demonstrated the value to people in using a language that gave positive meaning to addressing pain and discomfort in personal lives. It also explored definitions of lived experience and a skill base that added value to acknowledging and sharing lived experience with others. Some preliminary work was also carried out on the benefits of changing the criteria within recruitment from seeking to appoint the ‘best person for the job’ to ‘the person who would most benefit from the work opportunity’ for particular posts.

Objectives

In the next stage of development COLE will:

1. Identify people who can bring their personal lived experience from different social and health backgrounds to the development of COLE.
2. Work with these people to develop ‘cells’ that are geographical and/or relate to particular health and/or social factors.
3. Develop a communication system that opens up a discussion via the internet or other media to explore, promote and obtain sign-up to the aspirations of COLE.
4. Work with Colleges and Universities to develop and initiate accredited learning opportunities for people who want to work towards changing current ‘professional’ practice.
5. Work with organisations and individuals to develop entry level opportunities for people to learn from each other and to explore different understandings of what is understood by health and social disadvantage.

First Step

The first step will be to publish a shared Vision, Aims statement and perspectives on moving forward.

Derek Turner

20/5/11

Derek Turner
08:59 on 16 June 2011

The COLE Cloud

The College of Lived Experience (COLE) aspires to create a learning environment that can lead to work opportunities and a career structure for people who have gained valuable insights from their personal experience of overcoming the negative impact of a long term health, social, and/or traumatising experience.

The need for a COLE lies in the successive failures of institutionalised and professionalised solutions to long term health and social concerns. The obsessive drive towards evidence based, professionally focused, pharmaceutically driven, and socially controlling solutions have failed miserably in so many areas. When we, as Powys Equals Partnership, were included in the European Social Fund Equals Community Initiative we were told that they were hoping that we could come up with some new ideas as, from an employment perspective, the billions of euros that had been pumped into nation states by Europe had failed to make any impact on the lives of people in groups that often felt excluded from employment opportunities. While there has been a real shift in Equality of Opportunity there still remains a stubbornness to embrace Diversity in all its forms.

In embracing diversity at its core COLE wants to see full recognition of the value of lived experience within the employment structures and strategies of agencies that claim to provide support to particular groups in society. We believe that this will:

• Lead to better and more effective support systems
• Demonstrate the effectiveness of building a diverse workforce
• Create positive role models for people who may have given up hope

In this ‘Cloud’ we hope to:

• Initiate a discussion that explores the potential of COLE
• Provide a platform for people with lived experience to share their learning
• Develop the context of the learning environment for COLE
• Explore the areas of learning that can lead to a COLE prospectus

Derek Turner
09:01 on 16 June 2011

College of Lived Experience (COLE)

Mervyn Morris, June 2011

I am in part developing ideas that have been expressed by Derek and Laura. I agree with the concerns and provisos, and the need to proceed inclusively. In the spirit that Derek is promoting, I am putting ‘first thoughts’ on the table, hoping they are thoughts that make some sense!

Rather than at this point directly responding to what Derek and Laura have written about, I’ve tried to find my own starting point – albeit one prompted by Laura’s paper.

Why a “College”?

The idea of COLE is one I can relate to.  We are talking about another kind of institution, but one that is implicitly driven by the principles of education. I think this means developing a particular view about the nature of the knowledge we are trying to understand and develop, and also a view about the relationship between the learner and knowledge. If we see professionals in the mental health system as the holders of a particular kind of knowledge, we can also see the relationship between professionals and service users as a particular way of using that knowledge.

The idea of a College of Lived Experience can be:

a)      A repository of knowledge – all such institutions have a library - and that held knowledge will be selective to the field of knowledge we are concerned with. That knowledge will be collected, valued, protected, and made openly accessible.

b)      A place that will help people make sense of that knowledge, and through a process called teaching (rather than therapy) people will be supported to access and make sense of that knowledge. Concepts of knowledge transfer are important here – the idea of the ‘learner’ as an adult (androgogical v pedagogical) with agency, self-directing for example. The relationship between ‘teacher’ and ‘student’ (and the status of being a student) can be compared/contrasted with the relationship between therapist and service user. Indeed it also allows for comparing/contrasting the concepts of therapy and education:

• We will have to think about how we make that knowledge accessible – for example the idea of courses and teachers.
• We will also have to think about how that knowledge is catalogued and challenged – and these are also well articulated within educational taxonomies of the way knowledge is analysed and synthesised. It is also an environment where gaps in knowledge are recognised.
• We will also need to think about how people transfer/internalise this knowledge – and in particular that this is not just a cognitive but also emotional and behavioural process (knowledge also changes the way I feel and behave as well as think)

c)       A place where new knowledge is created, broadly the research agenda. In one important sense COLE can make a big contribution in identifying gaps. We have talked about different types of research that reflects different types of knowledge – quantitative and qualitative methods, and also what we are researching i.e. what we mean by ‘lived experience’ – our internal mental life, our relationship with others, our connection to our communities, our relationship to professionals and services, and how knowledge influences us – for example what difference the concept ‘recovery’ makes.

d)      A place that promotes and campaigns – a platform to promote new ways of understanding and transferring that knowledge. It can be a place that gives people a strong foundation from which they can use knowledge to challenge and also influence. 

Reflection/postscript

I am by nature cautious about institutions – Groucho Marx famously refused to join an institution precisely because it would accept someone like him as a member!  I think about belonging to an institution as having some parallels with the reason for owning property – and the difference between a house and a home - if we are ‘building’ a college - we can perhaps think more about what we mean by ‘lived’ and the idea of a College that is in some way ‘lived in’. 

I hold the belief that institutions are not inherently bad, so I do not see this institution as necessarily creating something that repeats the problems that we experience in the institutions we currently engage with/belong to, be they professional organisations, mental health service providing organisations and Universities (or churches or political parties!).  

Mervyn Morris
12:38 on 17 June 2011

Laura Gallagher May 2011

• An institution of higher learning that grants qualifications.
• A school special instruction in professional or technical subjects

 I really struggle with the concept of COLE as this. Taking people’s lived experience and learning and shaping it into our mainstream understanding of learning and giving it a value that conforms to our understandings of professionalism is not how I would see this concept.

I would like to see this concept operating outside of our "conventional wisdom" about learning, qualifications, professionalism, and how we value knowledge, skills and experience.

I did find a definition that begins to mean something to me in terms of the concept of COLE. That is a college as:

A body of persons having a common purpose or shared duties

What would that common purpose be? What would COLE be trying to change?

• There is an inequality of worth between professionals and people using services this makes people weaker rather than stronger, more isolated and divided from each other, more dependent rather than more resourceful, and more at risk of illness and distress.
• Providers are expected to be the ones with the power, knowledge, skills and capability to act effectively, while people in receipt of these services are assumed to have little or none of the above
• People who have been in receipt of services and those that have supported them through this have knowledge, skills, understandings and capability that we have barely started to comprehend, recognise and make use of.
• People who have not used services but have learnt to recover and thrive without them have knowledge, skills, understandings and capability that we haven’t even started to comprehend, recognise and make use of.

What could COLE do?

• Develop opportunities for professionals and people with lived experience to work together to improve the services and opportunities available to us all
• Promote respect for the value of lived experience of recovery and thriving
• Change the understanding - a person’s recovery belongs to them and not to the professional supporting them
• Lead to the development of services, opportunities and research that better meet our needs and that require us to be involved and take responsibility for an equal and reciprocal relationship with professionals and others, working together to get things done.

Where would we start?

•  
  • Building on people’s existing capabilities
  • Developing networks
  • Supporting the individual in recovery/thriving skills and competencies to reclaim their lives
  • Learning more about recovery/thriving and the factors which help and hinder it, and then sharing that learning
  • Sharing ideas
  • Encouraging action locally
• Who is out there (people with lived experience and professionals) that believes in this and thinks that it is worth doing. Who would help us?
• Is there really a body of people with lived experience that would want to see something like this develop or would want to spend their time on it?
• If so, how do they think they could do it? Would it involve:

Laura Gallagher
14:22 on 28 June 2011