1. The Cassel Hospital Outreach programme - When Patients become the Treatment

We are former patients of Cassel Hospital Outreach programme. In 2023, we delivered an entirely patient-led lecture at the BIGSPD conference on our auto-ethnological paper,  written whilst in treatment, “When Patients become the Treatment: Experiences of community-based treatment for complex trauma and personality disorders at Cassel Hospital”.  Cassel is an NHS, Tier-4, national inpatient and outpatient service, using therapeutic community principles. Outreach is the two-year community-based programme. In our lecture, we explained the treatment paradigm, discussing its rationale. The paper itself provides a unique insight into a therapeutic community model, through three patients’ reflections on a week in treatment, plus discussions on the themes arising. During the lecture we read extracts from the reflections, adopting a patient voice each, as if in dialogue, recreating a therapeutic community vignette. The reflections are powerful, raw and authentic.  We discussed themes brought to life by the reflections, including Cassel’s culture of enquiry, online working difficulties (written during Covid), and how we as patients, alongside each other, relate, challenge, validate, care and problem solve, becoming the treatment for each other and ourselves. 

Our lecture’s key messages are:

Research by patients gives a unique and valuable perspective;

Community treatment, based on therapeutic community principles, can be life-changing and life-saving;

Patient interaction is one of the most important parts of treatment, whereby the patients become the treatment.

By virtue of our purely patient-led presentation, plus our content, we challenged PD stigma and promoted therapeutic community treatment. Feedback in the room and on Twitter confirmed we had achieved this. In fact, the connections made with the audience created opportunities for further co-production, collaboration and research. This is especially poignant, as one of our group did not finish school, but has successfully co-written and co-presented a paper.

 

2. Ada Hui - see event details 

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3. Paul Johnson - It starts with us: Improving a cultural narrative in mental health services.

There has been much debate about the culture of the NHS and the need to make improvements to staff wellbeing (via addressing retention, and recruitment), as well as striving to improve patient outcomes and safety. Initiatives have included increased staff engagement forums, a focus on refreshing organisational vision and values, plus better communication within organisations, yet in reality, for things to radically shift, it starts with us.  Culture is often described as , ‘how we do things around here’. Consider, how would you describe your organisational culture?. We talk about culture in the same way we think about traffic (as a construct), but if we are in a car complaining about traffic, we need to realise that we are the traffic. Therefore how does a shift in perspective, in starting with us,  impact on those working in mental health? Staff who choose to work in mental health are quintessentially relational. We choose to work with those at the most vulnerable points of their life. Staff recognise the pressure on services but struggle with not being able to offer the care they would like to deliver, leading to stress and moral injury.  Moral Injury can be seen in the splitting between leaders and staff but also the emergence of othering in teams; eg., not looking after new starters, reluctance to take students, a lack of tolerance with overseas staff. Likewise teams set up processes to manage increased and unmanageable workloads. Organisations meanwhile create policies to improve patient safety. Isabel Menzies Lyth purports that when organisations become anxious they produce more policies to minimise risk and separate the person from the activities and people they encounter. The impact is what gets measured gets done leading to hitting the target yet missing the point. To truly make a change, our focus needs to be on critical reflective spaces, and encouraging effective supervision to slow thinking, whilst supporting managers and leaders to tolerate distressed staff without trying to fix or make things better. It starts with us.

Brief bio

Independent Consultant, Former Assistant Chief Nurse, NHS  is an accredited Group Analytical Psychotherapist, Registered Nurse (mental health) and a member of the Chartered Institute of Personnel & Development (MCIPD) who approaches his work holistically, looking at whole systems, individual and relational dynamics with a particular interest working with intercultural and equality issues.

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4. Jacqueline Sin - Co-producing digital interventions with carers for carers: New bottle old and better wine

Across geographical and cultural differences, family caregiving plays a crucial role in sustaining community-based mental health treatment. Providing effective psychosocial interventions to support carers are important for all concerned. Family work for carers run by statutory or voluntary organisations, in collaboration with carers as peers and facilitators have a long tradition. A wealth of research evidence shows that multi-component programmes comprising peer support, information and problem solving techniques for common care-related issues, are best-received and effective. This knowledge unfortunately has not led to widespread provision of family work to family members and friends supporting a loved one affected by psychosis. The perfect formula balancing the various key ingredients in particular the peer support element and the linkage to socio-familial capitals held within our communities also remains to be discovered. Digital interventions (DI) - designed to be used by end-users with no or minimal professional guidance -can offer a scalable solution here. DI also lend themselves readily to co-production with experiential experts to ensure they work well for the end-users. Through this lecture, I will share the co-production journey and trial outcomes of COPe-support (www.cope-support.org), a digital health information and peer support resource for carers of individuals with psychosis. I will reflect on the tweaks and boundary-pushing made to research methods and methodologies in co-producing digital family work, as much as the evolving and blurring roles and dynamics of professionals/clinicians, service users and carers as peers and experts through the 5-year project. I learnt the essence of researching the more nuanced but arguably the most important aspects of intervention co-production and evaluation. Last but not least, while digital health technologies have potential to deliver sustainable and individualised support to a critical mass of carers, we must work hard to eliminate digital exclusion and inequities which can further marginalise those already marginalised.

Brief bio

Professor Jacqueline Sin is a nurse-researcher committed to evidence-based practice as much as practice-based research. She trained as a mental health nurse in Hong Kong, before undertaking further clinical and research training in Australia and the UK over the last 30 years. Jacqueline’s work focuses on co-producing, evaluating and implementing innovative psychosocial interventions that work to improve people’s mental health. All her work uses participatory approaches to amplify the voices of people with lived experience and to mobilise the social capitals embedded within our social-familial networks. Jacqueline is also passionate in bridging research evidence into tangible workforce education and service development progresses. From 2012 to 2020, Jacqueline was awarded three NIHR fellowships sequentially; these supported her to lead nationwide digital randomised controlled trials and other studies to co-produce and evaluate innovative digital interventions for family members and friends supporting a loved one affected by psychosis. Her recent research programme, COPe-support (www.cope-support.org) won the Year 2020 NIHR CRN, McPin, MQ Service User and Carer Involvement in Research Award.