We are not alone…

Lorraine Wilson has found a space at #seeme14 where people can work according to their own styles, and find like minded people with whom to discuss ideas:

We are not alone. That’s the main message I have taken from two days of discussion, debate, support, and courage at this see me event.

It feels like a new beginning. Some of us have been working in isolation, trying to use our particular strengths to communicate the message that people of all ages with mental health problems are not looking for special treatment – we are simply looking for the understanding, space, and equality that has long been provided for those who exhibit their illness externally.

This event, however, has begun the process of a greater solidarity. There is a feeling that there is a space to say “the big idea” without prejudice or judgment. Just because no one has said it yet doesn’t mean that it’s not valid – quite the opposite in fact.

Casual chats have been as important as organised sessions. Hearing individual stories have made me realise that right across the wide spectrum of illness there are many common themes. At times it has also felt like looking in a mirror – I know, at last, that I’m not making it up. This was an accusation that was levelled at me by a former manager (not a health professional, in case you’re wondering). And when your level of self-doubt has plunged through the floor it’s all too easily to believe that not only are you worthless, you’re also a terrible person.

As a freelance writer and broadcaster, I’m lucky enough to have a platform. I have written about my own experiences of poor mental health in my weekly column in the Dundee Courier and take every opportunity I can to write and talk sensibly on the subject (to try and balance the nonsense!).

I have had some life-changing conversations over these two days and know now that it’s time to do more. Many of us will achieve mini-victories just getting through each day. I look forward to working with some of you to end the extra battles of stigma and discrimination that we really don’t deserve.

#SeeMe14 from the outside…

As the event begins to frame and prioritise actions to take forward, we asked Amanda O’Connell to give her impressions of the event based on following social media feeds, and to share some of the things that she’d like to see happen in the programme ahead:

See Me Now… I’m Amanda O’Connell. I’m a mental health trainer, a peer support group facilitator and I live with a mental illness. A co-inciding training course delivery left me unable to join #SeeMe14 in person, so twitter and its ‘live tweeting’ feature was certainly welcomed and of course the blog is a fantastic addition as well.

Here are just some of my thoughts on how we can reduce stigma:

  • More focus on the 100% who have mental health- When hearing about mental health, the statistic that 1 in 4 will experience a mental health problem in the course of a year is often quoted. But surely we need to focus as much on the 100% of people have mental health – to get the message out there that we all have mental health / wellbeing, and that mental health is relevant to everyone. That in itself will reduce stigma by reducing the ‘them and us’ attitudes.
  • Mental health education for all – Mental health training has traditionally been too focused on those undertaking it as part of their work, particularly those in a caring occupation. But everyone knows people with mental health difficulties and everyone has the power to help. Let’s target training more at the general public, and help everyone see the benefit of training for them.
  • Treat mental health like we treat physical health – Some people have problems with their physical health sometimes. Similarly, some people will have problems with their physical health sometimes – and that’s ok. Let’s treat mental health similarly to physical health; hence normalising it, developing more acceptance and less fear.
  • Open and honest talk – Open talk about mental health is a key factor in fighting stigma and increases understanding and awareness all round, developing true insight, empathy and understanding.
  • Think about our own attitudes and behaviours –We all have the potential within us to act in a stigmatising way, perhaps without even realising it. Even those who’ve experienced mental health problems themselves may stigmatise others – often through being influenced by our own experiences. In anti-stigma planning we need to think not just about others’ behaviours and attitudes, but also our own.
  • Consider the barriers– In considering how to reduce stigma, we also need to consider the barriers to doing so, and how we can overcome these barriers. ‘Open and honest talk? Great – but are people really listening? Why not, and how can we change this?’ being just one example. And an ever present concern of mine – are we constantly talking together and essentially preaching to the converted? How do we really reach the right people, reach the areas where change is most needed?

 A little food for thought…!

Here’s to Day 2 of the event! It’s great to see so many get involved.

I love this quote by Lily Tomlin, ‘I always wondered why somebody doesn’t do something about that. Then I realised I was somebody’’, an important reminder of the part we all play in making a difference.

Join a People’s Panel to Assist Programme Evaluation

Learning and evaluation are going to be critical to the see me programme going forward. One of the ways the evaluation team want to bring in the voice of lived experience is via People’s Panel. Dr.Joanne McLean from Mental Health Foundation explains:

Why do we need a People’s Panel?

The See Me evaluation will use various methods to capture the relevance and impact of the See Me programme on those known to be most likely to experience stigma and discrimination. That is, people with lived experience of mental health problems including:

  • those with diagnosed mental health problems who are currently using mental health services and their families, carers etc.
  • those who have not been diagnosed and are not using mental health services but are living with mental health problems.

Those who are not diagnosed and/or who are not using mental health services are currently under-represented in anti-stigma research and evaluation. It will be important to capture both the day to day community based experiences of these two groups as well as collecting data from mental health service users related to their care and treatment.

One way of doing this is to create a virtual ‘See Me People’s Panel’. This method has been used successfully by One of Us, the anti-stigma campaign in Denmark.

What is the People’s Panel?

The People’s Panel in essence is a list of email addresses only which have been provided by people with lived experience who wish to participate. Otherwise, the See Me People’s Panel is anonymous, no other information will be stored about the people on the panel alongside their email addresses. The See Me evaluation team at the Mental Health Foundation will manage and administer the People’s Panel.

How will it work?

The See Me People’s Panel will be contacted via their email addresses at various stages throughout the See Me programme and invited to participate in anonymous surveys to gather their opinions, experiences and ideas on various aspects of the See Me programme’s work. This data will be used to inform the evaluation of See Me as well as to create new primary research data on key topic areas to inform the direction of practice and campaigns of the See Me team and other stakeholders. The panel may be used to evaluate general social media campaigns as well as more targeted aspects of the See Me programme. It is anticipated that at least two topic specific surveys of the people’s panel will take place yearly. It is hoped, as with One of Us, that membership of the See Me people’s panel will grow over time which will produce higher response numbers as recruitment builds up.

How do I get involved?

Recruitment will begin for the People’s Panel in April 2014 and will be on-going throughout the See Me programme. Recruitment will occur through various means such as at events, on the See Me website, through current databases held by See Me and its partners as well as direct recruitment requests sent to organisations who are in touch with or are led by people with lived experience.

If you would like to participate on the People’s Panel, please contact Joanne McLean, Research and Development Manager at jmclean@mentalhealth.org.uk to find out more and/or to submit your email address for inclusion on the panel.

Student Mental Health Ambassadors: A Model to Build On?

One of the key things the refounded see me programme will be doing is building community capacity to address discrimination. The programme will include change networks, which will bring together people in geographical areas and thematic areas. It will also develop a lived experience participation network to ensure people with lived experience are central to the work.

For the last five years the National Union of Students in Scotland has run the Think Postive Project, to increase the capacity of student officers and institutions to address mental health in colleges and universities. One of the strands of the project involves supporting a network of volunteer student mental health ambassadors, who drive forward the work locally, with support from NUS. We asked ambassador Heather Innes to share some of the ways that her work has helped her fight stigma:

There are several reasons that motivated me to become a Think Positive Ambassador. For the majority of my childhood, I grew up knowing about and experiencing my mother’s Manic Depression. From the age of around 10, this was the big family secret, something my mother was highly ashamed of and we were sworn to silence. When she was signed off work for a year, her friends suddenly cut her off. With her depression at it’s worst, she became paranoid and was convinced they thought she was doing it for attention. She would rarely leave the house, and became worried about seeing people we knew in public on the occasions she did go out.

 As I grew older, I became more aware that this wasn’t something to be ashamed of, and stigma was the reason my mum’s friends shied away from her. However being aware of this stigma didn’t help me when, as a teenager, I began experiencing my own anxiety problems, and started self-harming. Being aware of the stigma only caused me to be more secretive, to the point where I managed to alienate friends rather than tell them the truth and refused to ever see my GP.

Leaving school and starting at college was a turning point for me. I became involved in my Students’ Association and met people with similar experiences to me. I learned a lot more about mental health, how mental ill health can affect students and the devastating consequences it can have. Becoming more involved with NUS Scotland, I became aware of Think Positive and the work it does to help students and tackle stigma. When I heard the campaign was looking for Ambassadors, nearly a year ago now, I jumped at the chance. I knew I could use my experience to reach out to others in similar situations, and thanks to my own teenage struggles, tackling the stigma that surrounds mental health is something close to my heart.

 Being a Think Positive Ambassador allows me to help tackle stigma, as it gives me a platform to reach out to people from. I’m able to contribute to the Think Positive blog, attend events and meet many new people. It’s opened my eyes even more, and I’m hoping to continue being an Ambassador for as long as I can.

A Personal Journey at #seeme14

Grace McGuinness has come to #seeme14 to find out more about how people with lived experience can get involved in the refounded see me programme. Literally and metaphorically it’s been some journey for her!

My name is Grace, I am rapidly approaching thirty and I received the majority of my official diagnoses in the last 3 years ago after almost 2 decades of mental health problems and am currently the best I have been mental health wise in my life. I applied to attend this conference as I have not only lived experience of my own ill mental health but that of family members and friends and I am SAMH Participation Champion. (Please blame Lesley Forbes at SAMH for that title, my ego is not large enough for me to come up with that one alone!)

Despite the progress I have made in recovery which makes me SO proud and happy today was incredibly difficult for me. This is the first time I have slept overnight anywhere apart from my aunt’s and cousin’s since leaving hospital almost two years ago. It is also the busiest environment I have been in since before my hospitalisation. Coming here was painfully hard, missing the organised bus from Edinburgh didn’t help and gave me ample opportunity to run away and DNA (Did Not Attend for those who aren’t au fait with the lingo of the out-patient world) the event as I have so many things in life.

Even when I was waiting on the bus here from Perth bus station the temptation to return home, put on pyjamas and use physical poor health as an excuse was massive and had to be fought. The stress and chaos caused by my sleeping late (which in turn was caused by constant packing and unpacking of things to bring with me) meant today started incredibly badly. Anxiety, panic and all the physical symptoms of those feelings meant I arrived at 12 feeling like I would rather be anywhere else than here.

That feeling ended at approximately 12.05pm – event staff made me feel at ease, welcome, and of importance. That welcome was the catalyst in turning today into one of, if not the best day of my life (births of my nieces and nephews OBVIOUSLY excluded).

I’ve made contacts, new friends and those who I would like to be friends with. I have shared experiences, interests, ideas and perspectives whilst enjoying meeting these people.

Not pretending to be intrinsically different to who I am to be accepted has been something of a revelation for me, as has being able to tell complete strangers some of my diagnoses and not feeling judged, shunned or examined.

Finding that the passion I feel for participation and practical change is matched with others means not just what I have just said about friends and contacts. It means I no longer need to worry about whether or not my intense feelings about mental health issues, stigmatisation, degradation and segregation of those of us with mental health issues is not indicative or symptomatic of my illness.

Hearing the missions, outcomes and plans of SeeMe has been awesome and there is nothing I disagree with which is incredibly rare for me! 😉

Knowing that SeeMe is as committed to participation, lived experience being shared and changing and challenging behaviours has left me feeling like the weight of the world has been lifted from my shoulders. I no longer feel like that ant trying desperately trying to push a golf ball up a hill and failing over and over! I feel heard, I feel supported, I feel fought for, I feel vindicated to a certain extent and I feel even more determined to help affect and bring about change than I did before.

All of this is thanks in part to everyone in attendance today, even to the gentleman who corrected me on information I shared regarding one of my diagnoses that a mental health professional had given me. He has shown me I can react in anger, compose myself and realise that I can shrug my shoulders and say what I just said to him, apologise for my initial reaction and attempt to interrupt him and say I am really sorry the information he has appears to be different to what I have been told, grab me fir a brew or a coffee and we can talk.

To sum up how I feel today (I apologise profusely for not doing this earlier – the ability to be concise is not something I can brag about) in one word is easy, thanks to SeeMe, all the staff and volunteers who organised and are facilitating the event and the other delegates in attendance I am relieved.

Relieved to be one of many.

Relieved to no longer feel or be alone.

Relieved that change is a-coming, and for the better.

The most progressive movement in the world?

Lisa Archibald believes that the energy at ‘see me’ now should be carried forward in communities across Scotland, to make ‘see me’ the most progressive anti-stigma movement in the world.

For many years, I have felt very strongly about the need to tackle the discrimination people with mental health challenges experience within communities. As part of New Horizons Borders, I have tried to do what I can at a local level.

 But as a 2013 Winston Churchill fellow I was recently given the chance to look at experiences of discrimination internationally. This past 6 months I have visited Australia, New Zealand and America and have talked to people about their experiences and explored new ways of challenging discriminatory attitudes and behaviours. You can find more about my trip here.

I feel so lucky to be part of this group of 200 people all sharing ideas to move forward Scotland’s anti-discrimination movement. I love my country and our people. I am proud to be Scottish, as culturally we believe in a welfare state. We support each other, our neighbours and friends. We understand the importance of community and looking out for each other.

This gives us a head start in raising awareness and challenging discrimination in communities. If the language we use was changed, people would far more easily identify with the human experience of emotional distress. “Mental health” is seen as a clinical label that creates social distance. But most people understand the language and feelings of emotional wellbeing and emotional distress.

It is not 1 in 4, it’s nearer 1 in 1.

 Lets start talking to EVERYONE about the importance of maintaining our mental wellbeing from as young an age as possible. Lets talk to employers- not about ill health or suicide prevention- but about the importance of our mental wellbeing.  Let’s be preventative.

There is a lot of passion in Dunblane Hydro at this event. I hope ‘see me’ do what they can to try and bottle that spirit and enthusiasm…

But not just that- continue the dialogue, get out to people at grass roots level and keep the momentum and enthusiasm alive.

That will help make ‘see me’ the most progressive anti-discrimination movement internationally.

 

 

Nothing For Us Without Us: Human Rights are Critical

Isabella Goldie, Head of Scotland for ‘see me’ management organisation Mental Health Foundation reflects on an afternoon of key discussion on human rights in mental health.

As part of the afternoon’s events at ‘see me’… Now, professor Alan Miller, chair of the Scottish Human Rights Commission, joined us. Alan’s presentation was a central part of today’s input, helping to frame the emerging approach to the refounded ‘see me’.

Earlier in the day the Health Minister, Michael Matheson, programme partners, myself on behalf of the Mental Health Foundation, Billy Watson as CEO of SAMH and Judith Robertson Director of See Me had outlined why the time was now right to begin to move to a rights based approach. Michael Matheson talked about the progress on stigma and discrimination to date and the ‘door’ that had been opened by ‘see me’ over the past 10 years. Now was the time to walk through that door. The Minister stated that we were now entering an important new phase that would most likely be more important than the last.

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Minister Michael Matheson tells the audience that addressing mental health discrimination should be in community DNA across Scotland.

 

He then made a very strong and poignant rallying call for everyone to come together to address the unacceptable level of stigma that many people still face. It really resonated with those in the room when the Minister also stated that a key focal point needs to be the stigma and discrimination encountered in services. Judith laid out the vision and called for a collective approach to shaping the next phase of ‘see me’. She was clear that the next stage needed to be underpinned by the experiences of those who live with the challenges on a daily basis and addressed through local solutions.

Judith introduced Gordon Johnstone from VOX who talked about his own lived experience of mental health problems and also outlined the role of VOX in supporting a lived experience voice in the work to come. Gordon handed over to Gemma Walsh who shared her personal story, a story that inspired and moved those in the room but we also heard first hand about the negative impact that stigma and discrimination had on her life. It was testament to her strength of character and commitment to making a real difference that Gemma shared her own story and journey of recovery. It was a moment when a light was shone on the challenges that people with mental health problems still face and the job ahead for ‘see me’.

From that start of his discussion, we welcomed Alan Miller’s ability to look at people’s lives through a wider lens, beyond services into the inequalities that people with mental health problems have to endure on a daily basis. Earlier presentations from Billy Watson and myself commended the work of ‘see me’ to date but highlighted the unacceptable negative outcomes for many people in our society. Outcomes that include dying earlier, being socially isolated and much less likely to be in employment. Alan took these points up and stated strongly that this isn’t about empathy or being nice to people but about rights and dignity. But with rights come responsibilities.

We need to start thinking about ‘see me’ as each of us, casting a mirror on our own positions and abilities to affect change. Alan stayed to take some interesting and of course challenging questions from the audience. This was an important point in the day, one where we collectively acknowledged that there is a serious job of work to be done and that not everyone currently feels that they have a voice. As Chair of the session I felt it was important to commend people for being brave enough to share their personal stories, but over the next day and a half we need to use the time wisely and turn our attention to what we can do to individually but importantly collectively to ensure that in the future having a mental health problem will not carry with it shame, unfair treatment and lives that are unequal.