The IMH blog has moved

All previous and future blog posts will now be hosted on the Institute of Mental Health website.

To check out the latest blog visit: https://institutemh.org.uk/news/blog

An honest perspective on research involvement

Sitting down to write any blog can be difficult, this blog on honesty, in the area of research, was quite daunting, not knowing who exactly my audience will be. I just want to give a little insight on a lay person’s view of being involved in research and how being honest with them can certainly improve the outcomes. All that I write comes from my own opinions and experiences.

Working (out) from home – coping by keeping fit

Today sees my 14^th day working from home and the second week for my other half who can’t work from home as he is a painter and decorator. However, the big bonus is I am getting my house decorated. Always a silver lining. So far, we are both safe and well and enjoying exploring being together 24 hours a day. With our busy lives we can often be so tired that relationships become difficult because you don’t communicate. I know when I have been dashing about doing work and Badminton, going to the gym etc. I am often so exhausted that I just fall asleep after tea, then wake up and go to bed, leaving my partner alone downstairs.

Research (Involvement) in the time of Corona

I recently started working for the Institute of Mental Health as the Public Involvement Coordinator.  I completed my induction with my Trust and then I set about meeting colleagues and peers around the building and those further afield connected to our work. Happily starting to understand the infrastructure of the Institute, the projects underway within the Centres of Excellence, the who’s who of Involvement and reading the excellent work of my predecessors. Then, no sooner had I started to pick up some real work and understanding the lay of the land, along came change.

2020 – A year of Gold Standards?

We all want gold standard care for all our patients –right? We want the best for people. So if we unpick that assumption a little further what should gold standard look like? Often when such questions are asked you need to read a long diatribe of words to get to the point. Not in this case. In this case, it’s simple – Trauma informed care.

Here’s a fact to kick us off; – “Notably, people in contact with mental health services who have been sexually or physically abused in childhood typically have longer and more frequent hospital admissions, are prescribed more medication, are more likely to self-harm and are more likely to attempt to kill themselves than people without experiences of childhood abuse” (Read et al., 2007).

This one fact alone should be enough to make us all stop and question what we do and how we do it, after all everyone want to reduce admissions in this day and age of cutbacks.

As a peer support worker, I have my own lived experience of trauma – which is something I am not ready to share yet, but it’s there, and mental health professionals who work with me need to know it exists and understand clearly that it may explain the reasons why I do certain things and behave in certain ways. And so it is for others who have been through traumatic experiences.

So what am I asking for? Well really I just want to spread trauma informed care like an infection through the NHS – we need to get talking and sharing good practice. We need to highlight what works well for people and give more service users/people experiencing distress opportunity for their voice to be heard. We need to all create a culture of openness where nobody feels unsafe while accessing services. We need to work towards ensuring that services themselves don’t contribute to harm or distress – we must not re-traumatise people. We must start to understand and accept that what constitutes trauma for one does not mean it will be for another.

I want all of the mental health services to ‘see through a trauma lens’, meaning that there is an understanding and acknowledgement of the links between trauma and mental health.

We need to recognise that trauma may exist and that we need to help people to feel safe. A paradigm shift from what’s wrong with you? To what’s happened to you? A focus on what is strong, not what is wrong. The peer support movement is based on mutuality, trust and hope, and if we can give this to our service users then we will be one step forward towards gold standard care.

Blog written by Clare Knighton

Clare.knighton@nhs.net

@knightonstar

How is digital technology influencing adult education and how could adult education address the ‘digital divide’ (exclusion and inequality caused by services moving online)?

Recently, the British Society of Gerontology held a joint meeting for two Special Interest Groups; ‘Educational Gerontology’ and ‘Technology and Ageing’. The event was organised to coincide with the 100^th anniversary of the commission on Adult Education.

Sharon Clancy kicked off the event with a presentation: ‘Celebrating adult education – 100^th anniversary of the commission’. This was about the 1919 commission on adult education which was part of the reconstruction after World War 1, aiming to support education of the population who had recently been given the right to vote. The commission called for education ‘throughout the life of the adult’. Sharon noted that the commission reflected the changing nature of work and had a ‘civic rhetoric’. The hundred-year anniversary report calls for a renewal of these values, perhaps addressing modern concerns about automation in the workplace and commercialisation of education.  Furthermore, the anniversary report included a theme about online learning and an aim to develop an online platform for adult education. This will be led by Melissa Highton, based at University of Edinburgh.

The next presentation was about older people’s concerns about digital technology and online search engines etc. Elvira Perez-Vallejos and Helen Creswick presented their recent research on this topic which can become a barrier to accessing online information or services. It was found that older people have little trust in online platforms or companies because they feel that they do not have a framework for establishing trust. For example: the ‘bricks and mortar’ of the high street bank gives a validity in the bank which supports trust; however, it is not possible to validate an online bank in the same way. Learning digital skills may build confidence and familiarity with using online resources; but the other side of ‘digital literacy’ is to improve the design of technology including websites to better accommodate the needs of older users.

We then held two workshops with contrasting themes. The first explored the ongoing relevance of more conventional learning, whereas the second explored drop-in sessions to build computer skills for older people. Katherine Brown talked about her experience with running local history cafés and how these facilitate learning as well as building local ‘assets’. This approach may be important in reaching a broader audience and addressing inequalities in access.  In the second workshop, Peter Wearn talked about how their drop-in computer skills group developed in response to local needs. The group meets in venues that are accessible and familiar (library and local education centre). The sessions teach the basics of how to use a computer and the internet, then most time is reserved for trouble-shooting problems. The group have developed resources to ‘get people started’ on different platforms.

John Miles led the final discussion session by offering a ‘provocation’ – if the Government were to introduce new funding for adult education, how would our local computer skills group respond? How would they develop governance and outreach within the community to make best use of the funding? Could this investment lead to a renewal of adult education, fit for our ‘digital age’? In response the group discussed the importance of ‘starting small’ – welcoming new members and creating a welcoming relaxed atmosphere. One view was that the group should develop with a participatory approach – acknowledging that everyone is an expert in their own lives; creating time for reflection would be important for development and future expansion of the group. Key points appeared to be that the group should maintain accountability, have a strong social purpose and aim to reinforce the civic through collective dialogue.

 

Dr Sharon Clancy is at School of Education, University of Nottingham https://www.nottingham.ac.uk/vision/learning-for-life

Dr Elvira Perez-Vallejos and Dr Helen Creswick are from HORIZON Digital Economy Research, University of Nottingham https://www.horizon.ac.uk/reentrust-research-update/

Katherine Brown is director of Crafting Relationships https://www.craftingrelationships.co.uk/local-history-cafe-3/

Peter Wearn is chairperson for Long Eaton 50+ Forum Website http://www.lead50plus.com/

‘Adult Education in a Digital World’ event was jointly coordinated by John Miles, BSG Educational Gerontology SIG and Dr Neil Chadborn, BSG Technology and Ageing SIG. Neil is at School of Medicine, University of Nottingham. It was hosted by Centre for Social Futures at Institute of Mental Health and was supported by Journal of Ageing and Society.

Introducing the Association of Mental Health Peer Researchers

A new innovative group called the ‘Association of Mental Health Peer Researchers’ was launched on World Mental Health Day 2019. The aim of this collective is to bring together people with lived experience of mental health issues, who are doing mental health research, across the University.

The official launch was attended by our key allies from different Schools and research groups, with the aim of informing them about our work so that they can support us and sign-post potential members. Following an endorsement from the Institute of Mental Health’s Director, Prof. Martin Orrell, the aims and objectives of the group were outlined (see below), and then two of our members showcased their research: Minh Dang spoke about her ongoing PhD work on the wellbeing of survivors of modern slavery, and Stefan Rennick-Egglestone shared about how peer researchers are involved in the Narrative Experiences Online (NEON) study. There was a buzz about the whole event, and people were excited about our vision for our work going forward.

Our new Association is open to the following people, based at or registered with the University of Nottingham:

• Anyone in a research post (Masters; PhD; Associate; Post-doc) at the University of Nottingham;
• Anyone who is involved in mental health and/or trauma research (broadly defined)
• Anyone who self-identifies as a service user and/or survivor and/or lived experience researcher;
• And anyone who self-identifies as having lived experience of their research topic.

We currently have 12 members (two post-docs, nine PhD students, and one Research Associate), from across four Schools: Psychology, Law and Social Sciences, Medicine, and Health Sciences. Our topics currently include research into: peer support workers; ADHD; recovery narratives; modern slavery; mental health first aid in the workplace; technology and mental health; young people and self-injury; inpatient experiences of risk assessment and management; and the mental health needs of emerging adults. The research topics cover a range of issues, populations, settings and methods/methodologies.

We’re slightly different from other groups of service users, who may be acting as consultants, or advisors to research teams, or those doing Patient and Public Involvement or Engagement work. We’re research active, and we see ourselves as a research group. We acknowledge that not everyone will self-identify as a ‘survivor’ researcher, that others with lived experience may not be using services, and that we’ll bring different backgrounds and experiences to the group. But we’re united around our two core aims of: raising the profile of peer research and supporting one another, as peer researchers.

Our first key objective is to raise the profile of peer research. We’ve seen experiential knowledge being utilised (and sometimes exploited) to improve the design and conduct of (often other people’s) research. We’re thrilled that people with lived experience are now conducting research into topics they have personally experienced. We know that the marginalised, and oppressed, can see and experience the world differently from the mainstream and the privileged – this opens up new possibilities for knowledge, for critiquing the social centre from which we are excluded, for challenging the blind-spots of those who are centre-stage. We can therefore bring new perspectives to the field of mental health. We want to disseminate user-led research. We are currently sharing resources with one another via Dropbox, and we hope to conduct an evaluation of our work at the end of the academic year, in order to add our experience of working, as an Association, to the evidence base.

Our second objective is to offer peer support to our members. We meet once a month. Every meeting will have space for peer support – for chit-chat, for raising concerns, or for talking about our challenges. We want to create a safe and supportive space for that. Our dual identity of having learned knowledge and experiential knowledge, or of having one foot in the academy and maybe the other in services, creates unique challenges for us. To some service users we’ve sold out, in aligning ourselves with academia we’ve joined the dark side of the force! Some academics can’t understand why we might identify as a ‘service user researcher’ – we’re just researchers, surely. We also have to navigate issues of disclosure, of how we manage feeling unwell whilst we’re in post, of dealing with the emotional labour of carrying out our research, and other similar issues – and we want to create a forum where we can talk openly about these kinds of struggles.

We usually meet on the last Thursday of the month (unless this clashes with half-terms or public holidays), normally from 12:30-13:30 at the Institute of Mental Health. However, please do email one of the admins for an up-to-date programme, and we can then add you to our distribution-list (either openly cc’d or bcc’d in emails, whichever is your preference). We also stay in touch via WhatsApp (joining is optional) and we’re on Twitter @AssocMHPRes and use the hashtag #AssocMHPRes.

Please email one of the admins andrew.grundy1@nottingham.ac.uk or minh.dang@nottingham.ac.uk if you’d like to join us, or if you’d like more information.

If you’re a service user, who is thinking of getting involved in research, we recommend downloading ‘A Research Handbook for Patient and Public Involvement Researchers’, which is available free here: https://www.manchesteropenhive.com/view/9781526136527/9781526136527.xml

Andrew Grundy (PhD student, School of Health Sciences) on behalf of the group.

 

 

Four Years of Peer Support

“You can’t go back and change the beginning but you can start where you are and change the end.” CS Lewis

The 7^th November 2019 marks 4 years for me as a peer support worker. It is something of a miracle. I had completed the accredited peer support training in the summer of 2015, when my bed was still warm from being detained on a section 2, where I also detoxed from alcohol.

Then it was time to apply for a role, after a year of no work following redundancy, I got the job. I remember being pleased, amazed and somewhat shocked but had felt that finally I had hope and direction. So, I had a start date of 7^th October, but as the day approached I became scared and anxious and my inner critic told me, quite clearly, that I wouldn’t be able to do the job, that I was useless and that it would be better if I just gave up and lost everything. I self-harmed and cried, not knowing what to do. Eventually, I called the peer support lead and told her that I couldn’t do the job. I expected her to graciously accept the fact that I wouldn’t be doing the role – but instead she just said: “well leave it a month and see how you feel next month?” I couldn’t quite believe it but accepted her offer and took a further month to regroup and decide that perhaps, maybe I could do the job.

How many employers out there would do that? Many I am sure would have just let me go, without further thought. Pretty amazing, eh?

So 7^th November came and I started work on a ward in Kidderminster. The first day or two was scary and I was unsure but due to the support from the staff, I soon settled in and began to enjoy working on the ward. I had spent the previous year feeling hopeless, worthless and could only see myself spiralling downwards. Now, a job gave me structure, routine and hope.

Then I transferred to a ward in Worcester, where I continue to work full time now. So what have I learnt during this time?

Firstly, I have learnt things about other people. I have seen so many people who have been devoid of hope and this has led to amazing conversations. I have felt privileged to be part of people’s recovery, to hear their stories and that sometimes its ok just to sit with someone in their distress, not to fix anything but just to be there.

I have learnt that sometimes there is no solution, but to be able to validate people’s experience seems just what’s needed. I have learnt that solving problems often involves helping people with benefits, or housing.

I have learnt, and seen with my own eyes, the amount of paperwork that nurses need to complete. I’ve seen them wrangle with those requirements against the need to spend time with patients.

I have learnt that mental health conditions are so much more than a diagnosis, there’s a social and economic problem too, that needs much more than pills to solve.

I have learnt and seen just how valuable the peer support role is to patients, the things they say to me, the surprise in their eyes when I tell them some of my story, that despite everything I can now work and add value to my own life, and the lives of others.

I have also learnt a lot about myself too – I’ve learnt that I AM resilient and have coped well with some very stressful times. I have learnt that it’s ok for me to relapse, that it takes nothing away from me as a person, nor does it reduce my capacity to help others as a peer support worker.

I have learnt that being honest about the way I feel does not make me weak – and that the honesty I show on social media helps others to be honest too. I’ve had heaps of messages from people thanking me for my honesty and praising my bravery.

I have become ‘slightly’ more skilled in managing my own mental health and maintaining my own wellbeing. I still have relapses, but I am so well supported I get back on my feet and back to work. Work itself keeps me well and I love the job. I truly feel part of the team, people ask my opinion and include me in team decisions.

“It is through this trusting relationship, which offers companionship, empathy and empowerment, that feelings of isolation and rejection can be replaced with hope, a sense of agency and belief in personal control.” J Repper 2013

Four years. Four years on my peer support rollercoaster, and it’s still running. I am still learning and growing. Thank you to those who never give up on me. Thank you to those who show me tough love. Thank you to those who help steer me to success. Thank you to those of you who believe in me. Thank you to those who ask me if I’m ok when they can see I’m not. Thank you to those in this trust who show me that there isn’t a hierarchy and allow my voice to be heard.

A psychiatric ward can be a very sad place, but it’s also a place of laughter and fun and I relish the creativity and brilliance of the people I work with, both staff and patients.

Will there be another four years? Who knows, I didn’t plan these four years but look how magical it has been…

Blog written by Clare Knighton

Clare.knighton@nhs.net

@knightonstar

Thoughts ahead of the Enabling Research in Care Homes forum (12th July)

Hospitals in England are facing unprecedented demand that they are struggling to meet. More people are being admitted to hospital in emergency situations that ever before. The increase in demand has led some people to look for admissions that could be considered avoidable. One group of people who have received particular attention are care home residents. Care home residents are amongst the ‘oldest old’ in society – research suggests that over half of all care home residents aged 85 years or above. What is more, care home residents often have multiple health conditions and a wide range of complex health and social care needs.

For some care home residents, the risks associated with a stay in hospital can outweigh the potential benefits. Care home residents are at risk of further physical decline due to prolonged periods of inactivity and the risk of contracting hospital-acquired infections. A transfer to a busy hospital can also be confusing, stressful and associated with cognitive decline. In particular, people with moderate and advanced dementia may become increasingly agitated and frightened at being placed in unfamiliar surroundings, cared for by unfamiliar people.

In recent years a number of NHS organisations have introduced initiatives to reduce the number of hospital transfers from care homes. Published evaluations of these schemes are lacking and hospital transfers from care homes remain poorly understood. A particular gap in knowledge surrounds the views of care home staff. This is surprising given the pivotal role that care home staff play in managing residents health conditions. Often care home staff are involved in initiating a transfer – for example, when a carer notices a resident is “not quite right”.

The research I am conducting as part of my PhD is seeking to understand the work that goes on in a care home prior to a hospital transfer taking place. This includes the chain of events that precede a transfer and the decision-making processes that staff undertake. I have interviewed 30 members of care home staff across 6 care homes in both the East and West Midlands. The findings that I will present during the ENRICH East Midlands forum on Friday 12^th July will outline some of my key findings.

In particular, my talk will cover: how do care home staff feel about transferring residents to hospital, who is involved in the transfer process, how do staff decide when to call for help, what factors influence the decisions that care home staff make? In addition, I will also cover a number of practical take home messages for care home staff about how to improve the care of residents around hospital transfers.

My research takes a new approach towards understanding hospital transfers from care homes, by listening to the views and experiences of care home staff. This approach could provide new insights about how to reduce the number of ‘inappropriate’ transfers and be an important first step in developing high quality alternative services for care home residents.

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EnRICH  (Enabling Research in Care Homes) is a network specifically set up to promote research in care homes and provide the opportunity for care home residents to take part in research . EnRICH supports care home staff and researchers to set up studies and organises 3-4 Forums a year .

Post written by Fawn Harrad ahead of the ENRICH forum. Fawn is an PhD student at the University of Leicester. She has previously worked in both the NHS and social care settings. Fawn’s research focuses on hospital transfers from care homes. In particular, she is interested in the work that goes on in a care home before a transfer takes place, including the actions and decisions that care home staff undertake before a resident is transferred to the hospital.

Contact details: fh127@le.ac.uk /  @FawnHarrad

 

 

When Rest in Peace is not enough:Nursing my tribute to the Late Sarah Wheeler, Founder of The Dragon Café

When I was a student nurse, I often wondered if there was a space outside the acute mental health wards where people could experience the type of freedom that they talked about away from the mundane, restricted and controlled environment that offered little or no activities to stimulate the mind. I asked for placements in community mental health services, and I was very disappointed to see that some of the nurses in the community mental health services had similar attitudes as some nurses that I saw on the wards. Some mental health nurses are tired with very high levels of empathy fatigue, lack of compassion and the depersonalisation of people that had their identities replaced with labels such as bed number 3, the one that paces about and the one this, and the one that. Thus, when I qualified as a mental health nurse, I knew exactly the kind of nurse that I wanted to be; the opposite of the nurses that I described above. Why do you care so much a nurse once asked? I remember suggesting to some nurses that they should use my method of care, which I refer to as ‘The JoBardi’s Face Off Model of Care in Nursing’. Face Off is when a nurse replaces the face of the patients with the face of a family member, friend or loved one. I am confident that the quality of care will improve if nurses adopt ‘The JoBardi’s Face Off Model of Care in Nursing’.

And so, as a mental health nurse, my search for a community space where people could be themselves without the restrictions continued until 2014 when I joined LinkedIn and wrote a summary with a conclusion that read something like ‘I would like to do a PhD in Social and Community Psychiatry’.  A few days later, I received a message from Alan Sarll, who suggested that I contact Sarah Wheeler and consider researching The Dragon Café for my PhD. I emailed Sarah, she replied, we met, discussed the PhD and the rest is in the past, present and the future that now beholds my PhD and me. I should probably thank the nurses because their attitude motivated me to seek out something different; I found Sarah and The Dragon Café. 

Last two weeks when I have received the 2018/2019 Tri-Campus Postgraduate Prize, I reflected on how my PhD started, and I took another look at Sarah’s Order of Service which I have had on my study desk since 2016. This year marks the third anniversary of Sarah’s death, and it reminds me of how it all started. You know, the journey that most of us now call Josephine’s PhD, the award-winning presentation Floorboards, Whitewalls and Butterflies, and poster, S P A C E.

I feel extremely privileged to have received the Economic and Social Research Council (ESRC) PhD funding to study The Dragon Café. I am in the final year and still wondering how I got here. Yes, how did this all start? In the last few months, I have been writing my findings chapter, and the meaning that participants attached to ‘a sense of loss’. As I write this blog, I am feeling the loss of someone who gave me something that I did not quite realise was the gift that would take me to several parts of the world where I have attended and presented at 18 conferences, met, interacted and learned a lot from some wonderful people.

Over the years, I have thanked and will continue to thank a lot of people for their support of my PhD journey. Indeed, I would not have started or continued without the ESRC funding, my extraordinarily supportive supervisors; Professor Paul Crawford, Professor Stephen Timmons and Dr Nicola Wright , who nurtured my unconventional way of thinking,  @UoN_SHS and the  @UoNgradschool. More importantly, I want to thank 250 plus patrons including volunteers and gatekeepers who accepted, socialised, participated in activities, interacted with me informally and formally, and provided me with rich and diverse data about their experiences of attending The Dragon Café.

However, the first credit truly belongs to one person; the Late Sarah Wheeler, Founder and Creative Director of The Dragon Café. Therefore, in this final lap of my PhD and the third anniversary of Sarah’s passing, I would like to pay this tribute to Sarah. To say thank you, my friend, and my inspiration, for creating something that made it possible for me to access a crypt in a church where I saw myself in others and others in me through my ethnography of The Dragon Café where I learnt the true meaning of the word; SPACE.

— — — — –

Josephine NwaAmaka Bardi  is a final year Economic and Social Research Council (ESRC) PhD Student at the University of Nottingham and Founder of the Campaign the Raise Awareness of Mental Health in Higher Education 

She has developed The RAMHHE Research Activity Model for Educators, a novel, non-clinical and pedagogical model for exploring the meaning and understanding of mental health among university students. This will soon be published in the Nurse Educator Journal (Wolters Kluwer Health).