Rebecca Toney: Actions speak louder than words

The hula-hoop, the shimmy and the fiddle

10 October was World Mental Health Day and on Saturday 14 October Carnival MAD enlivened the IMH as part of a Nottingham-wide programme of events: see

The inimitable Julie Gosling chaired the day and many brave people took to the stage to demonstrate their personal strategies for wellbeing. I was struck by how many of these were non-verbal. Hula-hooping, belly-dancing and a jaunty tune on the fiddle resonated more for me than words or pictures. And it’s impossible to hula-hoop and not smile. It’s impossible to shimmy and not giggle. It’s impossible to listen to a tune that dances and to stay slouched and crouched in your mind.

I drove home refreshed, revitalised and with some questions for us all:

  • What research question(s) might explore non-verbal ways of recovery and wellbeing in a health-service environment where talking therapies (and medication) are primary options?
  • As adults in offices at desks and keyboards should we hula-hoop now and again (the theme of this year’s World Mental Health Day was ‘mental health in the workplace’)?
  • What more can we do, together, to involve the IMH and its work in World Mental Health Day – sharing and celebrating our work and taking the opportunity to meet people who may wish to participate in a study or collaborate in its progress?

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Rebecca Toney is a Research Assistant based at the Institute of Mental Health. Rebecca works on the RECOLLECT Study – a study of Recovery Colleges in England which is led by Professor Mike Slade, Mental Health Recovery and Social Inclusion. Rebecca is a current user of secondary care mental health services and worked previously as a NHS counsellor in Staffordshire, Greater Manchester and Derbyshire over 13 years. Rebecca is keen to see the IMH ‘live and breathe’ its work and was delighted to attend Carnival MAD.

For more information on RECOLLECT: see or email:

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A Carers Life is…

A really insightful piece from Trevor Clower. Trevor organises the Carers Road Shows every year. You can follow his posts and activities through his blog.


A Carers life is a busy one for calls
Pills, bed sores, bandages & falls
A Carers life is always short of time
When their late & there’s no sign

A Carers life is frustratingly annoying
They know best … become appalling

A Carers life is a professional one, is a pain
But no one slaps any letters after your name

A Carers life is popular, like the teams rowing boat cox
But you get little feedback, like you’ve just ticked a box

A Carers life is relentless, needing super powers
Services offer
2 hours in a morning
2 hours in an evening
The Carer has pick up the other twenty hours

A Carers life is an invisible one, your not
In any health plan, discharge plan or plot  

A Carers…

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Fiona Birkbeck: Hands-on Healing and The Rise of The Machine

To listen to doctors and nurses describe their everyday experience, is to realize how visceral, how raw, the interaction between them and their patients really is. We dress our doctors in white coats, our nurses in colour-coded uniforms, and dress our health policy in jargon but essentially the business of ‘healing’ is a series of ancient rituals, full of hope (Webb 2013) and at times, soaked in disappointment, fear and resentment.

But in the 21st century, the daily work of the ‘healer’ has been changing in a profound way. The increasing role of technology in medicine can be seen in this dramatic image of begowned figures circling around a prone patient in the robot run operating theatre at Hamad, Qatar. This is the very leading edge of medicine in the 21st century and the attention of the practitioners is intensely focused on the data led information coming from the machine above them.


Figure 1 Robotic surgery in Hamad, Qatar

The patient is only visible as a tiny scrap of vulnerable flesh, he is almost completely hidden by the robotic arms which will cut into him with an accuracy much greater than that offered by the human hand of a surgeon.

If all goes well, the patient will wake up and the journey he is on, which began with a conversation with a doctor or a nurse, will continue with conversations with doctors and nurses. This interrelational core of his treatment and recovery, while not as measurable as the success rate of robotic surgery, will be essential to its outcome. As a Medical Director from a Midlands trust explained to me, ‘the NHS measures what is easily measurable, like surgical outcomes but there are many other measurements of success’ (Medicine participant 21).  As this patient lies in recovery, data will stream from him into monitors around his bed. The practitioners who come to talk to him will first check these monitors, with the same intense gaze of the theatre staff in the image above. They cannot afford to make a mistake, and so our new practitioners have become adept at reading data, at searching for electronically produced statistical anomalies. Another of my participants, a gastro-enterologist, told me that ‘the patient comes to me now with the data in front of him’. She commented that she feels ‘sad’ for new doctors because ‘although they have much more accurate instrumentation, they don’t have the same pleasure in talking to patients. In touching a hand to a belly to make a diagnosis, a decision. The machines do a lot of it for them’ (Medicine, participant 12). However, the machines have to be monitored. Even machines make mistakes. And this means that the attention of these practitioners is not focused on the person in the bed in front of them. The patient is no longer the first resource for information about himself. And, crucially, neither the patient or the doctor is seen as the most accurate source of information about the patient’s condition. The tremendous advancement of medical technology is in danger of deskilling the expert practitioner and devaluing the relationship between the expert practitioner and the client.

A third participant in my research, a consultant cardiologist,  summed up this problem. ‘It (the relationship between the practitioner and the client) is a human interaction, in the end. As a doctor, I am altered by an interaction with a patient and, if it is a good interaction, I am rewarded. Data should facilitate that interaction, not replace it.  A machine doesn’t give me positive feedback’ (Medicine, participant 18).

Shoshana Zuboff (Zuboff 1988), refers to the ‘reflexivity’ that comes from working with ICT, an ‘informating’ process she believes generates ‘intellective skill’. The effective analysis by doctors and nurses of complex data requires practical training in the handling of data and the ‘reflexivity’ described by Zuboff (1988) to allow a useful interpretation of the material. And so ‘health’ workers have also become ‘informative’ workers, as this report for the Australian Health Review by Stephen Duckett, (2005:201-210) shows

In addition to the epidemiological and demographic transition, the environment for the health workforce is also changing because of wider social trends, in particular the impact of changes in information and communication technologies. (Duckett 2005: 201-210)

He describes the use of ‘multidisciplinary care plans which systematize the treatment and care processes’ and goes on to explain how these systemized care pathways are facilitated by tailor made software packages which are changing the work practice of health care professionals.

However, one practitioner educator told me that using software packages to aid diagnosis is barely better than ‘a stab in the dark’. ‘What they (junior doctors) want,’ she went on to say, ‘is didactic teaching and hands on experience. They should be with patients, talking to patients, examining patients, not in a classroom, taking part in yet another role play.’ She concluded by saying, ‘Where’s the fun in that?’ (Medical participant 24).

I thought the use of the word ‘fun’ was intriguing, and I asked other practitioners what they thought of her comment. Yes, absolutely, they said, she’s right, it should be ‘fun’ – working face to face with patients is exciting, challenging, ever changing. I realized that no one enters a people based profession unless they get real satisfaction from interacting with people. It should be ‘fun’, it should be rewarding; instead, practising medicine has become a kind of terrifying drudgery, with endless data-led tests to interpret, where failure brings litigation.

Solomon (2004) describes how one GP interviewee explained to her that the once dyadic relationship between GP and patient has now become a threesome; the Department of Health sits in the consulting room in the shape of a demanding, data crunching computer.

And maybe this lies at the core of the dissatisfaction junior doctors feel with their training and their roles, a dissatisfaction that led to the bitter dispute between these practitioners and their employers in 2016. They want to work with people, to have the time and the resources to interact with patients, that is why they decided to be doctors, but they are working with data.

Where’s the fun in that?

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Fiona Birkbeck  is a PhD researcher at the University of Nottingham. Fiona’s interest in the systemic issues faced by expert practitioners in Health and Education in the UK today grew from her experience of delivering workshops on resilience to education and NHS staff at venues such as North Staffordshire Trust, the BPS Annual Conference and The Science Learning Centre, University of York. She currently delivers an Education and Education Assessment module on the Medical Leadership, Education and Research MSc at De Montfort University, Leicester.

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Duckett , S. J., 2005. ‘Health workforce design for the 21st century’. Australian Health Review, 29 (2), 201-210

Gerada, C.,  ‘Something is profoundly wrong with the NHS today’. British Medical Journal  16th June  2014  Available from: [accessed 14 June 2017]

Solomon J., 2009 ‘An Exploration the relationship between prescribing Guidelines and Partnership in Medicine Taking’, University of Leeds, PhD Thesis

Solomon, J., Raynor, D.K., Knapp, P. and Atkin, K., 2012. ‘The compatibility of prescribing guidelines and the doctor-patient partnership: a primary care mixed methods study.’ British Journal of General Practice. 62 (597), pp.275-81., 10.3399/bjgp12X636119

Webb, D., 2013 Pedagogies of hope. Studies in Philosophy and Education. 32;4:397-414

Zuboff, S., 1988. In the Age of the Smart Machine: The Future of Work and Power. Oxford: Heinemann.

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Prof Tom Dening: Dementia research – it’s not all drug trials

wam logo final blogWhen people consider dementia research, they often think of trials of drugs to treat or slow the disease. However, understanding and combating the many and varied negative effects of dementia requires more than just drug trials. In my research at the Centre for Dementia at the University of Nottingham’s Institute of Mental Health, we’re looking at an important topic within dementia care where no drug is likely to be available: hearing loss in care home residents.

Dementia is common: there are about three-quarters of a million people with dementia in the UK. Hearing loss is common too: almost half of people in their 70s have some degree of hearing loss, and this rises to 80% in people aged over 80. The two conditions often occur together, especially among residents of care homes, where around 75% of residents have dementia and at least that proportion have hearing loss. Probably about 300,000 care home residents have both.

This convergence of dementia and hearing loss in care home residents matters for several reasons:

  • care homes are noisy environments
  • care staff may lack knowledge and skills to support hearing aids and to communicate effectively
  • the presence of other conditions, such as dementia, can affect staff attitudes and approach to hearing loss
  • care staff may not have English as their first language
  • hearing aids may be supplied but are often not used, get mislaid or broken, or batteries go flat
  • losing expensive hearing aids can upset families and residents
  • the resident may not be able to use or may not tolerate hearing aids, or even understand their purpose.

Clearly, dementia and hearing loss are big problems among residents in care homes. Indeed, if you mention ‘hearing aids’ and ‘care homes’ in the same sentence, most people just shake their heads or grin wryly, because this is recognised as a difficult area of care home work.

At the moment, there is no obvious intervention to use in a clinical trial in this area. It is not just a matter of giving everyone a hearing aid, because there is no good evidence that this improves outcomes for residents with dementia. Also, because there are very few, if any controlled trials of any intervention to improve hearing or communication in care homes, there is little point in attempting a conventional systematic review.

I had been interested in this clinical area for many years, having visited hundreds of people with dementia in care homes and finding that so many of them had hearing loss. When I came across realist methodology, I thought that this looked like a promising approach. Realist synthesis (or in this case, realist review) is a method that uses multiple sources of data to examine questions of what works for whom, when, and under what circumstances. Data can be obtained from the published literature, including the so-called grey literature as well as journal publications, but also from people who are expert in the area either from personal or professional experience (context experts).

Our team has received a funding award from the NIHR Research for Patient Benefit programme to run a realist evaluation called ORCHARD: Optimising hearing-Related Communication in care Home Residents with Dementia. We have been gratified that everybody whose help we have sought has been enthusiastic and interested to know what we will find out. However, of all the things that make this a strong proposal, I think the most important is that the research has arisen from everyday clinical practice.

Professor Tom Dening (third right) and the ORCHARD team

Our approach is very different to a drug trial for dementia – there will be no drugs, but instead we’ll look at what approaches, aids and adaptations work best for people in care homes with dementia and hearing loss. We won’t be generating data by testing a drug or intervention on participants either, but rather synthesising and evaluating existing data from many sources.

Our evaluation will identify best practice and research priorities, including which interventions to use and how to measure them. In this way, we hope our research will have as big an impact for people with dementia as any drug trial.

Note: This content was first published here on the National Institute for Health Research (NIHR) blog and has been redistributed with permission.

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Professor Tom Dening is Professor of Dementia Research and head of the Centre for Dementia in the Institute of Mental Health at the University of Nottingham School of Medicine. He is LCRN dementia speciality lead for East Midlands.

NIHR is running a campaign to mark World Alzheimer’s Month. Find out more on the NIHR website.



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Book review by Eugene Egan: Narratives of recovery from mental illness, the role of peer support



Narratives of recovery from mental illness: The role of peer support
Mike Watts and Agnes Higgins
Routledge (2017)
ISBN: 978-1-13-884799-6
158 pages

It’s not often that I come across a book that has resonated with me on such a profound scale but this is one of them. Narratives of recovery from mental illness: The role of peer support is part of a growing body of evidence-based research that is challenging the prevailing bio-medical approach that currently dominates the mental health system especially within the field of psychiatry. Using a narrative based approach the authors, Mike Watts and Agnes Higgins, interviewed 26 people with lived experience of mental distress about their recovery journey to illustrate the transformative power of peer support. Those interviewed were all members of GROW, a mutual support group, that advocates the importance of social interaction that encourages people to become active agents in taking back control of their lives, through peer support, rather than just leaving it to health care professionals with their reliance on medication.   Those interviewed included people with a wide-range of diagnosis, including schizophrenia, bi-polar disorder and depression.

Mike Watts, Research Fellow at Trinity College Dublin, and Agnes Higgins, Professor in Mental Health at the School of Nursing and Midwifery at Trinity College Dublin, facilitated the research by giving those interviewed the opportunity to tell their stories from a personal perspective demonstrating the power of co-production thus reflecting the growing call for a more person-centred social approach to recovery. Their findings suggest there’s too much emphasis on the clinical approach to recovery and not enough focus on personal recovery and the importance of social inclusion. Adding that social factors are too important to be over-looked and ignored.

Relying solely on the medical model in the mental health system ignores the many social factors and adverse life experiences, such as bullying, sexual and physical abuse, divorce and bereavement, that can have a negative impact on people’s mental health but with social intervention through peer support and mutual empowerment the authors were able to demonstrate that people who had experienced mental distress were able to recover and build the emotional resilience needed to cope with adversity and other challenges that life throws at us.

While the researchers suggest that the traditional approach through the use of medication may be necessary in the early stages of some people’s recovery their finding illustrated that recovery can also be resolved through every day social interactions primarily through the use of peer support and social inclusion and with much better results.  The authors have provided us with an alternative way of looking at the prevailing medical framework of mental health therefore demonstrating the need to consider other avenues and pathways towards recovery and wellbeing.

Many of those interviewed in the study explained how they found their experiences with the medical profession a very debilitating and disempowering experience. For example ‘Tom’ described an encounter with his doctor when he was nineteen and had just questioned why the medication had failed to alleviate his symptoms when the doctor looked at him very gloomily and said:  Well you’ll be on medication for life. I don’t think you’ll ever hold down full time work. Friendships will be difficult but you’ll make friendships within the hospital’. Adding he’d never drive or have a girlfriend (p65).  It was only when ‘Tom’ came across GROW with its emphasis on mutual support and social interaction did ‘Tom’ become empowered to take control and take that path towards recovery and wellbeing thus proving his doctor wrong.

The emerging recovery story is taking hold across the western world and it is one that is ‘illuminating some of the limitations of the prevailing medical story and one which commentators such as UK clinical psychologist Mike Slade et al. (2012) believe has “come of age”, (p18).

In a chapter entitled: Recovery through mutual help, the authors discuss the eight processes identified in the study which testified to the value of peer support for those recovering from mental illness. These included an empathetic and compassionate social network, becoming hopeful, reconnecting with the self and others, positive risk-taking, and a re-authoring of a more positive identity which eventually led to a re-enchantment with life.

As someone who is undergoing the recovery process with many years lived experience of mental distress I have no doubt that this book demonstrates a profound and deep understanding of the person-centred recovery process and will in my opinion become a seminal read that puts forth evidenced-based research about the transformative power of peer support that challenges the medical model. The authors, Agnes Higgins and Mike Watts, along with the 26 co-authors, have produced a piece of work that will be a source of hope and inspiration for people with lived experience of mental illness and emotional distress, as it was for me.

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Eugene Egan ( is a peer worker and recovery college facilitator for Birmingham and Solihull Mental Health Foundation Trust.

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Call for content

Cloud 1So far this year the blog has had over 5,850 views from 69 countries and we have you to thank! We would also like to thank our wonderful contributors who have allowed us to cover diverse topics such as prejudice in mental health, mental health & disclosure, social care since the mental health act,  brain stimulation,  academic/creative writing, peer supportschizophrenia and the media and many others.

We have no new content this week, but there’s plenty of fantastic posts from the last few years which we would invite you to browse through. As always we would love to hear from you and welcome new material so please do get in touch!



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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 ( 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



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