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

African Health Policy Network and COVID-19

Maureen Ndawana, Community and Engagement Officer for the African Health Policy Network and coordinator of Ffena, tells us about how they have been able to keep their members connected with help from NSUN.
NSUN Members' Event and AGM 2020

We are delighted to invite you to our Members' Event and AGM 2020 on the 24th and 25th of November with keynote speakers, discussion sessions, and panels with guests including Rosie Tressler, Ursula Myrie, and Meg-John Barker.
SM Talking Circles and COVID-19

Jane Salazar, founder of SM Talking Circles, talks about her group for adults with selective mutism. They have been able to move online and start planning the use of non-verbal software for their group.
Influencing

NSUN has a seat at the national policy table, where we advocate and lobby for the voice of lived experience. Find out which alliances and consortiums we are a part of.

African Health Policy Network and COVID-19

Maureen Ndawana, Community and Engagement Officer for the African Health Policy Network and coordinator of Ffena, tells us about how they have been able to keep their members connected with help from NSUN.
NSUN Members' Event and AGM 2020

We are delighted to invite you to our Members' Event and AGM 2020 on the 24th and 25th of November with keynote speakers, discussion sessions, and panels with guests including Rosie Tressler, Ursula Myrie, and Meg-John Barker.
SM Talking Circles and COVID-19

Jane Salazar, founder of SM Talking Circles, talks about her group for adults with selective mutism. They have been able to move online and start planning the use of non-verbal software for their group.
"Normal" saw millions trapped in the poverty cycle. Is that what we want to return to?

Part 2. Amy Wells explores the experiences of those struggling with work, benefits, debt, and housing.
Annual Membership Survey 2020 now open

Our annual survey for members of our network is now open and will close on Friday 16th October. It's really important we hear from you: what do you want us to focus on in the next year?
There is no normal - Alisdair Cameron

"There is no normal": NSUN Trustee Alisdair Cameron responds to talk of "the new normal". This is our first of a short series of three articles exploring unmet need & what "business as usual" actually means for mental health community groups & survivors of distress & trauma.
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.

Jobs and involvement opportunities

We are recruiting a Policy Officer to expand our focus on rights-based mental health policy that considers the impact of poverty, precarity, housing and employment on mental health.
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.