Lived Experience Leadership

Mapping ‘Lived Experience Leadership’

Darllenwch y dudalen hon yn Cymraeg: www.nsun.org.uk/arweinyddiaeth-yn-seiliedig-ar-brofiad-go-iawn

Hi. My name is Rai. I’m a survivor (of psychosis, mental health services, diagnoses, trauma, coercion and a few other things). I’m working with NSUN and National Mind to help understand more about this thing that some people call ‘lived experience leadership’ in England & Wales.

Over the next month I will be listening to as many people as possible (through an online survey, interviews and focus groups) to explore:

What does ‘lived experience leadership’ mean to different people?
In what ways is it a helpful or harmful concept?
Examples of projects, initiatives and situations where people with lived experience have been involved in organising and/or influencing.
What can help to nurture / strengthen this?
What can stop it, or make it difficult?

Ultimately, I’m looking at whether there is a role for NSUN and National Mind to support the thing that gets called ‘Lived Experience Leadership’. If there is a role, I am wondering what that role might be.

At the end of the project, I will be gathering the learning together to share with NSUN and National Mind who have commissioned this work. I will also write an open-access article or blog, sharing the key points with the wider community. This will be shared on NSUN’s website, but if you’d like to make sure you get a copy please email me.

Take Part:

There are four different ways of sharing your views and experiences.

Online survey
Collaborative whiteboard
Interview
Focus Group

Online Survey:

If you would like to share your thoughts and experiences on ‘lived experience leadership’, please complete this survey: https://nsun.typeform.com/to/QPlSy5pz

All surveys are anonymous. If you email me in a pdf survey or a recording, your email will be deleted as soon as I have saved the information. Recordings will be transcribed and then the audio copy will be deleted.

If you’d prefer to record answers to the survey, please do. Send the audio recordings to [email protected].

If you would like to download an easy-read version of the survey, click here for a pdf version. The Word version is available here. Just fill it in, save a copy and then email it back to [email protected]

If you would like to download a pdf version of the survey (compatible with screen readers), click here. The Word version is here. Again, please fill it in, save a copy and then email it to [email protected]

If you would like the assistance of a translator, or know someone who would benefit from this, please tell us.

Whiteboard

We have set up an interactive whiteboard, with 5 questions. You are welcome to write, draw or add images to them.

Join the collaborative whiteboard (others can see, and add to, what you have contributed): https://awwapp.com/b/usqpxslo4fedq/

Share your thoughts in your own personal whiteboard (you won’t be able to see anyone else’s contributions, and they won’t be able to see yours): https://awwapp.com/b/setuv1atdlome/

Interviews and Focus Groups

If you would like to take part in an interview (phone or online) or join an online focus group, please fill in this form: https://nsun.typeform.com/to/jACSfq0y

All focus group and interview participants will receive £50 (in money or vouchers) in thanks for their time. Interviews and focus groups should take up to 1 hour of time, each.

If you have any questions or concerns about any of this, you can email me at [email protected], or speak with Akiko [email protected].

Interviews and focus groups will also be available in Welsh.

FAQ

What do I mean by ‘Lived Experience’?

Everyone has experience of living. But when I say ‘lived experience’ I’m referring to a particular kind of experience - experience of mental health issues, being a client/patient of mental health services, being diagnosed with a mental health problem and/or hospitalisation.

It’s a clumsy term, but it’s the best one I have at the moment. I’m using it because I believe there is a big difference between going through experiences like these and supporting someone else through them.

What do I mean by ‘Lived Experience Leadership’?

The term ‘Leadership’ is contentious. It can validate, invalidate, excite, irritate and bore people. It may be that the term ‘leadership’ offends or annoys you. If that’s the case, I hope you still contribute to this project as you have something important to offer that needs to be heard.

A large part of this project is about engaging with the questions, complexities and debates around lived experience leadership. We want to understand and give space to different viewpoints, rather than gloss over them and produce a single narrative and pretend it is the truth.

Whatever words we use to describe them, I hope to learn about initiatives and situations where people with lived experience are involved in organising and/or influencing.

This could be:

At home, in our local area, in cyberspace, regionally, nationally or internationally
With words, actions or in more creative ways
As part of a named role, or not
In a paid, unpaid or partly paid
Acknowledged by others, or unseen
Involving a few people, or thousands
Involvement, co-production, research, peer support, community development, media, training, organising, writing, activism, policy or something I haven’t yet found words for.

Why am I doing this?

Over the years, I have benefited from the time, wisdom and generosity of other survivors in many different ways. I’ve seen survivors connect, organise and generate bodies of wisdom that have helped shape the landscape I walk in. Without this, I would not be who I am. I’ve also seen people burn out, be silenced and become exhausted. I have been exhausted and jaded, at times, myself. I find the idea of leadership challenging in lots of ways, and in this project I am asking questions that I do not have fixed answers to. I am genuinely interested to hear what others think.

Separate to this piece of work, I am currently studying for a PhD in the field of survivor knowledge and organising in mental health. It is a topic that is close to my heart and I am spending a lot of my time being curious about it.

Can allies take part?

Whilst allies are welcome to complete the survey, and have valuable contributions to make, this process will privilege the voices of people with lived experience.

September 2020

Latest

NSUN Annual Report 2019-2020

Our 2019-2020 Annual Report is now available to read online. It covers our activities over the last year, including, briefly, the beginning of our response to COVID-19. This annual report also includes tributes to Jan Wallcraft (1949-2020), who was a pioneer in the survivor movement as a researcher and activist.
Peer Support: Working with the VCSE Sector

NSUN, AMHP and Mind have jointly produced a thought-piece outlining how voluntary, community and social enterprise sector (VCSE) organisations can meaningfully contribute to the provision of peer support in mental health; and offer practical examples of the diverse ways in which this is already happening.
Remote and Online Peer Support Resource

Over the past months, collaborative working has shown that we have shared experiences of what works. This resource, for anyone involved in providing peer support, outlines best practice, tips, and information about remote support, including the move back to face to face.
Another shocking scandal - why does this keep happening?

Blog post by Andrew Lee, Director of People First, on the recent news from Yew Trees Hospital in Essex of ten staff being suspended after a CQC report found they "dragged, slapped and kicked" people staying in the unit.

NSUN Annual Report 2019-2020

Our 2019-2020 Annual Report is now available to read online. It covers our activities over the last year, including, briefly, the beginning of our response to COVID-19. This annual report also includes tributes to Jan Wallcraft (1949-2020), who was a pioneer in the survivor movement as a researcher and activist.
Talking Sense and COVID-19

Janey from Talking Sense, a Hearing Voices Group, tells us about their group and how moving online using funding from NSUN enabled them to expand their reach.
Wish and COVID-19

Wish, a user-led charity for women experiencing mental health difficulties in prisons, hospitals, and the community, talk through the move to online and their hopes for the future.
Youth Activism and Intentional Peer Support with Hearts and Minds

We hear from five young mental health activists from Hearts and Minds about their experiences on the Intentional Peer Support Training programme.
Traveller Pride and COVID-19

Tyler, the founder of Traveller Pride, talks about how the NSUN fund has allowed them to set up a phoneline and make therapy more accessible for their members during the pandemic.
Let's Talk About Loss and COVID-19

For the second film in our series showcasing the work that community groups have been able to do with NSUN's COVID-19 grant, we hear from Beth from Let's Talk About Loss.
Nomad Radio and COVID-19

Mohamed and Amina from Nomad Radio tell us about the activities they've been able to carry out with NSUN's COVID-19 grant.
Sybil on NSUNCovidLife

In the 34th and last post in our series #NSUNCovidLife, Sybil shares her experience of lockdown, and her reflections working on #NSUNCovidLife.
Jolie Goodman on lockdown, art and activism

In the 33rd post in our series #NSUNCovidLife, Jolie Goodman reflects on lockdown, art and activism.
Colin King on Covid 19

In the 32nd post in our series #NSUNCovidLife, Colin King talks about Covid-19, whiteness and racism.

Jobs and involvement opportunities

Vacancies with the National Survivor User Network
4Pi national involvement standards

Developed by people with lived experience as part of the National Involvement Partnership (NIP) project, the 4Pi National Standards ensure effective co-production, thus really improving experiences of services and support.
Global Ministerial Mental Health Summit - Open Letters

The UK government is hosting a Global Ministerial Mental Health Summit in London on the 9th and 10th of October, 2018. The Summit aims to “build momentum on global mental health issues such as early intervention, public health, research, tackling stigma, and promoting access to evidence-based services.”. Read the Open Letters to the Organisers, Partners and Delegates of the Global Ministerial Mental Health Summit, London
BME mental health service users launch manifesto

The Kindred Minds BME mental health service user led manifesto is a unique resource, has been written by BME mental health service users and has a comprehensive vision for the policy and practice changes needed to improve the mental well-being of BME mental health service users.
History

About the National Survivor User Network (NSUN) and the wider service user survivor movement. What we have achieved.
Join as a member

We are a user-led network of over 5000 individual and group members. Join us to find out what's happening across England to improve the experiences of people who need services and support when in distress. We aim to connect, inform and influence.
Survivor Researcher Network launch manifesto

Written by the Survivor Researcher Working Group, the SRN manifesto sets out the background and context to survivor and service user research and SRN's aims and values as a network
Alternatives to detention/sectioning under the Mental Health Act 1983. Can you help with suggestions?

As part of her work for the Independent Review of the Mental Health Act, Dorothy Gould is trying to collect as many examples as possible of alternatives to detention/sectioning.
Our vision

Our vision is for the lives of people who experience mental distress, discrimination and disadvantage to be better
The Principles of Peer Support Charter

A collaboration between statutory and voluntary sector organisations has facilitated the production of a peer led and produced Principles of Peer Support Charter.