Monthly Archives: July 2017

Emma Nielsen – “Me too”: Mental health and disclosure as an Early Career Researcher

me too 2When I’m not PhD-ing I’m often covered in paint. Recently, I gifted two paintings to the ‘crisis house’ that helped me and held me together earlier this year. Today, I received the most unexpected of thank you cards from the house. It was one of those game changing, reflective moments and I very nearly tweeted about it. Why? Because I work in self-harm and suicide prevention and I think that the ‘crisis house’ (which I maintain is an odd term to use to describe places of sanctuary and support) does a fantastic job.  Because hope is possible and hope is here. Because small things can make a huge difference and small acts of kindness can change your day and change your world. Because I tweet most everything and why should this be different?

But it is different.

It is a disclosure and talking about mental health as an Early Career Researcher (ECR) is not a neutral act. Depending on who you talk to it is either brave or foolish, but never neutral. Even as someone who is directly and indirectly relatively open about her history, I am aware that writing it down is a gamble. But I don’t want to work in a world where it is only acceptable to talk about lived experience in the past tense. Or where it is too much of a gamble to do unless you already have your tenure position and an established reputation. How can we meaningfully encourage others to talk about suicidality when we still live in a culture where we don’t talk about it ourselves?

In many ways, I live in a very privileged world. I work in a lab that is passionate about involvement, engagement and the value of lived experience and sees no reason why this would not apply to the whole team. I have an incredibly supportive supervisor who I can be very honest with. My mental health has never been a secret and I am respected for who I am and what I bring – no more, no less. Above and beyond, I have colleagues who will visit me in hospital and deal with important emails when I’m out of Wi-Fi range. I have collaborators who send support (animal GIFs and postcards) and mentors who mean it when they tell me to prioritise my health and stay well. In short, my world is full of ‘good guys’.

But disclosure is still a risk.

I know it is a risk because I’ve felt it. I’ve dealt with the judgement from Healthcare professionals when I have told them about what I study and, with guidance, I’ve navigated satisfying the additional requirements needed to get back to the PhD that I love. I’ve handled being asked at an international conference if I ever felt ‘a fraud’ as a researcher, given my lived experience. Sure, at the time, I came out with something strikingly coherent about spheres of expertise, but it shook me. It really shook me and it made me question whether there was a space for me in academia. No one should be made to feel that. I shouldn’t still feel as though I have to work twice as hard as my peers as I have something to ‘make up for’. I shouldn’t feel the pressure of how to explain the periods of absence from my PhD at job interviews. If I had been physically unwell there wouldn’t be a problem in explaining; this would not be a conundrum. Within a field that should be informed and understanding, when it comes to mental health there remains a question mark around how open to be. A question mark and a lot of silence.

And that is part of the problem. For as long as we go on leaving the silence unchallenged, people will internalise it. I’m guilty of this myself. When planning my research fellowship last year, I selected dates based on temperature. Yes, New England is beautiful in ‘the fall’. I got to experience Halloween, Thanksgiving and the US Elections. I got to go to the Association for Behavioral and Cognitive Therapies (ABCT) Convention and the Harvard Vs. Yale football game. These were all awesome features of the Autumn, but they weren’t why I chose that semester to travel. I chose the Autumn semester for ease of covering up.

I think if you had asked me at the time why that mattered, I would have said because I want the choice to disclose or not. And 100% I think everyone has the right to make that choice. For me though, I think it is closer to the truth that I wanted to be seen as a researcher first and foremost – as if lived experience somehow challenged that. And this is the problem. This is the underlying hum that I think needs to change.

As researchers we frequently quote prevalence statistics, yet I wonder who we think they refer to, if not ourselves as well. There is no simple ‘us’ and ‘them’.  At best, expertise and experience is a Venn-diagram, arguably with a decent sized overlap. There are lots of us with lived experience – who have had thoughts of harming, who have harmed or made attempts, who care for someone affected and/or who have lost someone to suicide. We all wear many hats and we shouldn’t be afraid to acknowledge that. Research is richer for having input from multiple perspectives. Research communities are too.

Just as we want to educate people that is it okay to talk and that experiencing suicidal thoughts is not that uncommon, we need to turn the spot light back on ourselves. I think we need to consider why we collectively aren’t able to support a culture in which academics, particularly ECRs, feel freely able to raise their hand and say ‘me too’.

I was once asked why I spend my time painting when ‘painting is never going to save the world’. At the time I shrugged and said ‘it might’, but in all honesty my painting won’t. Painting sure hasn’t saved me, but it has helped me to rediscover a version of myself that I deem worth saving. For me, painting is authentic and authenticity is transformative. I think if we could all be a little more authentic – with ourselves, with our colleagues, with our social media presence. If we could all do that, maybe that would start to change our worlds. From here there is hope.

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Emma Nielsen (@EmmaLNielsen) is a PhD student in the Self-Harm Research Group (SHRG), School of Psychology (emma.nielsen@nottingham.ac.uk) and an Associate Fellow of the Institute of Mental Health.

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If you need someone to talk to, Samaritans are available round-the-clock (and free to contact) on 116 123 (UK & ROI) or jo@samaritans.org.

 

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Cafe Connect: A night of findings. Join us, 23rd July

We are holding a free event at Nottingham Contemporary on 23rd July 6-8.30 pm where we will be discussing innovative work that the Self-Harm Research Group (University of Nottingham) have being doing with Harmless and young people on finding new ways to talk about self-harm and eating issues. You will hear from a range of people about the project and hear performances from spoken word artists.

See details below.

Spaces are limited so you need book herehttps://tinyurl.com/cafeconnect-SHRG

Refreshments will be provided.

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Guest post from Elly Jansen, OBE and founder of the Richmond Fellowship

Comments on the vacuum in Social Care Since the 1959 Mental Health Act: Then and Now

 

Having unexpectedly arrived well into my ‘eighties,’ it seems timely to reflect on my personal experience of the mental health arena, past and present.

In May 1959, when I opened the doors of Lancaster Lodge, Richmond, it was with the aim of providing a place which would nurture and respect people who had nowhere decent to go on leaving mental hospital. Yet, what seemed to me to be an obvious response to need, did not commend itself to those from whom support might have been expected and I found that not a soul was willing to back me.

For a start, I was a foreigner whose credentials were highly suspect! I was a Divinity student from Holland who had come equipped “merely” with three years’ relevant training (and – more important – three years practical work, mostly as leader/carer of a group of adolescents, and as the so-called practical work supervisor of the 1st year Psychology students) at the Paedologisch Instituut of the Free University (Amsterdam). Following this I had completed a three year nursing training which was accepted in the U.K. and which qualified me as a State Registered Nurse. This was in addition to the experience gained through the stresses endured by my whole family during the War years! I learned to cope with the constant dangers of Nazi-occupied Holland, and to assist my mother in finding the means of survival not only for her nine children but also for a succession of illegal refugees from Germany and from the Dutch west coast.

Furthermore, in 1959 it was considered dangerous and irresponsible to create, in an ordinary house in an ordinary street, a Therapeutic Community for people who had been     “Inmates” in mental hospitals. For a number of years, TCs had in fact existed in an army unit for traumatised soldiers and as specialised units in a number of mental hospitals, but even there they were often looked on with suspicion or scorn by other staff, who considered it “asking for trouble” to employ democracy and peer support with patients who were considered incapable of understanding and supporting one another.

And, of course, my project was not plain sailing, and that first year in Richmond was full of challenges. My fellow house-mates – some of whom had been discharged by the Cassel Hospital as “unsuitable for treatment”- came with strong dependency needs and, in some instances, with well-developed powers of manipulation! Our initial group meetings were focussed on me, and I came under pressure to accept the role of mother, nurse, cleaner, bread-winner – even mistress. It took several months and some tremulous perseverance on my part, before we had formulated, and agreed, a workable way of living together and of respecting boundaries, with the aim of enabling the recovery and independence of each person. All of which was a challenge and a steep learning curve for myself, as well as for my house mates.

However, having sat in on the debates in Parliament on what was then the Mental Health Bill 1959, I saw the danger of mini-institutions being created. These would tend to be staffed by those who, for want of specialist training would perpetuate patterns of care based on the long-term institutionalised concept of “mental patients” and their needs. Eager to avoid that trap, I chose to start from an assumption of shared “normality”, and from this to explore what was needed on the basis of our common experience. Yet, despite my wish to be on an equal footing with my fellow residents, an important principle emerged quite soon: I could not just be a member of the Community on a par with the others. Although there was amongst the residents a true spirit of care for one another, I was there to provide what others had come to receive, and willy-nilly I had to modify my definitions of my role and input. There was no escape!

Nor was I left in peace by the outside world. I was threatened with deportation when the Home Office (at the request of an organisation with an ostensibly similar remit) questioned my right to set up my small community. The objection raised was that, as a foreign student, I had neither a work permit nor permission to operate a service. I was able, however, to counter this by demonstrating that I had sat my Intermediate Batchelor of Divinity (with excellent results!) and was registered with London University. I had no position or salary for any activities and was merely sharing my home with free citizens who, on leaving mental hospital, had chosen to share my house with me. I conducted my own defence – successfully – and have since found that most issues which tend to be referred to a lawyer can in fact be resolved in person if one takes time to study the details and record them appropriately.

Meanwhile, the experience of the residents’ Psychiatrists, on the basis of their (typically) fifteen-minute monthly sessions, was that their patients showed substantial improvement, and that this appeared to be associated with the process of receiving help from, and of contributing to, the wellbeing of their fellow residents.

From this small and largely informal beginning, a more structured organisation began to be formed. An increasing number of psychiatrists formally referred residents, and the capacity of Lancaster Lodge, plus the surrounding flats which I had rented, could not accommodate more people. Fortunately, Surrey Local Authority promised 50 % funding for an additional building which was eventually found in East Molesey. As the Organisation grew, we held senior staff meetings to articulate and to commit to paper the principles and practice of our group life.

The evident benefits of the carefully debated and designed T.C. with its clear principles, practices and boundaries, became widely recognised, and resulted in a demand for such a resource from many parts of the UK. Subsequently demand grew from other developed countries, and also from countries whose mental health services were either non-existent or at a very primitive stage. The WHO requested a handbook that could be universally accepted and before the seventies a comprehensive manual existed that did not provide precepts so much as concepts.

The extension of therapeutic provision overseas naturally involved a whole new stage of this work. In each country a reliable and capable Board of Trustees needed to be appointed, and positive relationships built up with Governments, universities, churches and secular bodies. Prospective Managing Directors needed to be identified, who would then train in the UK – a training designed to enable them to translate their newly acquired expertise to their own country and culture. It was doubtless due to the fact that the time was ripe for the TC model – which recognises the potential in people to respond to being valued and validated – that this model became quickly recognised for its universal effectiveness and relevance. Such was the level of support, both from Governments and the community, that there now exists a worldwide group of Affiliates and Associates who have ongoing professional links as well as affectionate personal bonds with many of us in “ the old country.”

In 1959 – our first year of operation – I started our training function by organising a monthly meeting between clergy and doctors to explore mental health issues, and especially to consider how to be pro-active and how to respond to crisis needs. Our sessions always included our staff and from their participation it became clear that, although the majority came with professional degrees, they needed specific and relevant training in how to provide leadership in the TC, how to understand its group dynamics, and how to create a truly healing community in which members could develop the courage to be open and the ability to become sensitive to the feelings and rights of others. My next step, therefore, was to expand our training activities and, in 1966, to create a College providing enhanced training facilities for our staff, who had already been training on a one day per week basis as part of their employment contract. The College was then able to extend this programme to provide courses for the staff of Local Authorities and Charities, and to launch group dynamics “experiences” – not only for our own staff but also for those in leadership roles in, for example, schools, social services, and the Church. The external training was funded by the bodies involved, but the training of our staff had to be funded by ourselves – an expensive item for our budget, but worth every penny as far as the benefit for residents was concerned. A knock-on effect, of great benefit for the staff, was that they acquired skills which were welcomed widely in Universities and Social Services posts.

THAT WAS THEN; BUT WHAT OF NOW?

Today the papers are full of neglect and abuse of the elderly – which sadly, it appears, continues and worsens despite this publicity. Children have a somewhat better deal and, when they are neglected or ill-treated, the sadness and shame of it never leaves the headlines. But what about mentally ill adults of working age?

They were promised, in the July 1959 Mental Health Act and subsequently, a better deal – better alternatives to the large institutions, relevant care, opportunities to regain a full life – but where are the alternatives and where are the resources? Many are deprived of timely help, and many are at risk, wretched and desperate – not only outside the hospital but also within it, since available funding has been put into other needy parts of the Health Service, leaving precious little for therapy and therapeutic activities.  And on leaving hospital (usually still struggling to cope) there are not the means to devote to relevant aftercare resources, and to address the problems that have in the past defeated them. A recurring consequence is the “revolving door” which too often follows discharge, i.e. a speedy re-admission to the hospital ward, which itself is critically short of beds and severely restricted in its resources. This is a pattern which is far more costly than a Therapeutic Care Home which can provide a “bridge” between hospital and community. The well-run therapeutic community has the best means to help those who feel defeated and alienated. It has the potential to restore self-respect and to nurture the ability to enter into a positive relationship with self and others.

However, the problem of lack of relevant care is not just the result of cut-backs: it derives also from short sightedness – a lack of recognition of the most essential elements of relevant intervention, and of planning and co-ordination – usually on the part of Government and of hard-pressed or uninformed Local Authorities. The tragic result is that modestly priced community rehabilitation resources remain underused and/or underfunded whilst those in desperate need are being deprived of relevant help and all too frequently return, again and again, to costly and over-subscribed hospitals, with a lessening of hope at every stage or, alternatively, giving up the struggle altogether.

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Elly Jansen founded the Richmond Fellowship in 1959 and directed it for 32 years. The fellowship is now one of the largest voluntary sector providers of mental health support services in England.

You can find more information about the fellowship here

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