The RECOLLECT project – A lived experience perspective 2017

In February 2017, a group of academics, researchers and “Lived experience” volunteers came together to explore the character, dynamic and outcomes of recovery colleges. The volunteers came from Leicester, London and Brighton, and were made up of people who had experienced mental health illness and attended a college, a carer of a person using the college and someone of mental ill health who had chosen to currently not attend a college. The group endeavoured through literature review, energetic discussion and challenge, to understand what a recovery college was, what and how it delivered learning experiences for those people experiencing mental ill health, and the longer term outcomes for all those involved in the recovery college community.

We agreed to meet 4 times in the year, and in the true spirit of co-leadership, thrashed out a meaningful and descriptive concept of recovery colleges that could reflect both academically relevant information and valuable real life experience. Our group fostered active listening, respectful argument and an openness and honesty that gave an authentic voice to our subsequent papers. The uniqueness of all the participants – academic and not, made a truly kaleidoscopic experience which we all hope will encourage you to learn more and get involved in recovery colleges yourself.

Written by Emma Munday – Bipolar, slightly old, human.

 

We jelled from the start

The group together

Our experience we pooled

Lived experience

Lived experience

Our knowledge coalesced

Thoughts and feelings

Merged

Used for research

Lived experience

Lived

Lived

Empowered

Confident

Confident

Giving inner strength

Sense of self worth

Worth

Common goals

Coalescing thought

Together with

Lived experience

Lived

Lived.

Poem written by Jane, who said, ‘I have been a mental health service user for most of my life and have suffered with bipolar disorder. I have found that being involved in the RECOLLECT project has been informative, useful and empowering to me.  I have enjoyed meeting with people with a common goal and talking and working together has been a lovely experience.

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The RECOLLECT study has been based at the Institute of Mental Health, funded by a Programme Development Grant from the National Institute for Health Research and led by Professor Mike Slade. Emma and Jane wrote their respective contributions to this blog after participating in all four meetings of the Lived Experience Advisory Group to support the delivery of RECOLLECT. You can find out more by contacting Peter Bates, PPI lead at the Institute of Mental Health or emailing peter.bates@nottshc.nhs.uk.

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Ellen Townsend: Small talk saves lives

It sounds much too simple doesn’t it?  Making small talk could save a life.  But the truth is, it really could.  Today SHRG is supporting the campaign launched by the Samaritans. They are asking us all to be courageous and strike up a conversation with someone if we are worried about them at a railway station. MAKE SMALL TALK AND YOU COULD SAVE A LIFE is a new campaign that encourages public to intervene to help prevent railway suicides.  The Samaritans note that for each life lost on the railways, 6 are saved by life saving interventions.  You can find out more about the campaign here: https://www.samaritans.org/media-centre/our-campaigns/small-talk-saves-lives and here http://www.bbc.co.uk/news/uk-41992967

You can hear me speak to Andy and Sarah on BBC Radio Nottingham about the campaign here http://www.bbc.co.uk/programmes/p05lnxxs (The piece starts at 2:08:00 with my bit at 2:10:17)

The myth that work like this will help to dispel is that suicide is not preventable – it is and right up until the last moment.  Johnny Benjamin was brought back from the brink of a suicide attempt by a caring stranger (Neil Laybourn) who he managed to track down through the incredible ‘Find Mike’ campaign so he could thank him for saving his life http://www.telegraph.co.uk/news/health/10604805/I-finally-got-to-thank-the-man-who-saved-my-life.html

Kevin Hines, who survived a serious suicide attempt, maintains that he felt he could have been diverted from his attempt if just one person had asked him ‘Hey kid, are you OK?’ http://www.kevinhinesstory.com/

Dr Christabel Owens from the University of Exeter has produced a great leaflet to help get people talking about suicide if you are worried about someone, which you can access here: https://www.exeter.ac.uk/media/universityofexeter/ref2014/documents/UoA2_leaflet.pdf

So let’s all be courageous.  You won’t make things worse.  Start a conversation and save a life.

This post first appeared on the Self Harm Research Page .

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Ellen Townsend is a Professor of Psychology at the University of Nottingham, a fellow of the Institute of Mental Health and a visiting fellow of the University of Melbourne. Ellen is the director leading the Self-Harm Research Group.  

You can follow updates about Professor Ellen Townsends work on Twitter:  @SelfHarmNotts 

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Theodore Stickley: Singing for Enjoyment, Mental Health and Well-Being. The Nottingham People’s Choir

Funded by the Institute of Mental Health (IMH), the Nottingham People’s Choir was formed in 2013 as an initiative to promote mental health. It is not a condition of Choir membership that people have used mental health services, yet recruitment of members takes place within a local NHS mental health trust. The group, located in Nottingham, is facilitated by a professional choir leader who is experienced in working with people with mental health problems with the support of a mental health nurse.

The Choir meets weekly during school term-times; it meets during the day time as there are a number of community choirs meeting locally in the evenings. It was thought that meeting during the day, would enable people who do not work to attend and during school term-time to enable parents to attend. The venue is provided pro bono by the Nottingham Royal Concert Hall in the city centre by an arrangement with the local authority. The Choir has a steering group that comprises mainly Choir members with representatives from the local authority, the venue, the IMH, and the local NHS trust.

Participation in arts-based community activities has been reported to improve health and well-being for the past 30 years. There is a growing body of evidence to support community singing for health and well-being outcomes. In an international study, researchers report that from a sample of 1,124 choral singers, the majority claimed positive psychological benefits.

We conducted a qualitative study of 10 choir members and it became clear that participation in the Choir has a significant effect on the health and well-being of the individuals. Each participant described many positive experiences from their attendance. These were classified into five themes which are: social benefits, health benefits, accomplishments, personal benefits, and enjoyment.

choir-groupshot

Participants reported improvements in social experiences, health benefits, accomplishments, personal benefits and increased joy in their lives.

  • ‘There’s honesty and openness I think because you’re all in the same boat in a way. We’re quite supportive of each other and share difficulties.’ – Maria 
  • ‘It’s a big distraction because you can be focused…Improving your concentration and your memory about what you’ve learned.’ – Violet
  • ‘In some ways I treat the choir, even though its not part of recovery college, I would treat it as another class because it does give you hope and opportunity.’ – Duncan
  • ‘We’ve sung in different venues and they’re probably places that I couldn’t have ventured out into before that. I suppose in an evening as well, so that’ gave me more confidence to push myself.’ –Isaac
  • ‘It’s a bit like taking medicine I suppose. Yeah, it’s definitely got that feel good factor. You just feel uplifted. It doesn’t matter what you’ve sung. It’s just that process of singing.’ – Isaac
  • I think it’s been really beneficial for me in so many ways. I mean I’ve been here and I’ve felt quite ill, I’ve had occasions where I’ve not been too well but I still keep coming but it always lifts me.’ –Maria
  • ‘Well it’s been a total joy, it’s a fun thing and friendly. Very, very friendly. I just enjoy it immensely…It’s just what I needed’ – Paula
  • ‘I moved heaven and earth to get here with my Mum because it’s such a life-enhancing experience, especially for her. To be honest if it was at two o’clock in the morning I’ll make an effort to come.’ – Sadie

Participants reported improvements in social experiences, health benefits, accomplishments, personal benefits and increased joy in their lives. Participants have expressed how the Choir has had significant improvements in their mental health, physical health, and well-being and has helped some members recover from being in ‘dark places’. Given the extremely low cost of running a choir such as this, it makes the potential to set up such an enterprise easily achievable within either statutory health or social care, or in the voluntary sector.

For the full research report, please see:

Plumb, L., & Stickley, T. (2017). Singing to promote mental health and well-being. Mental Health Practice20(8), 31–36.

This post first appeared on PsychReg

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Associate Professor Theodore Stickley is the Academic Lead for Public Engagement and Associate Professor of Mental Health at the Faculty of Medicine & Health Sciences at the University of Nottingham. He led on the ESRC-funded seminar series for arts, health and well-being. This development has led to the formation of the Special Interest Group at the Royal Society for Public Health.

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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 http://www.mhaw.org.uk/

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 http://www.researchintorecovery.com/recollect or email: rebecca.toney@nottingham.ac.uk.

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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.

trevorclower

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

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

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

A Carers life is popular, like the teams rowing boat cox
Assessment
Opinion
Consulted
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
Asked
Informed
Considered
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.

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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.

ttxfb3@nottingham.ac.uk

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References

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: http://php.nhs.uk/something-profoundly-wrong-nhs-today/ [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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