"Hope", "Concern", "Anger", "Principles" and "Excellence"

About me – My name is Eleanor Levy. My lived experience includes adverse childhood events, addiction and recovery, progressive hearing loss from moderate through severe to profound loss, severe autism and complex trauma. I accomplished transition from living as a man to living as a woman, while working in prison, 25 years ago.

My professional experience includes 20 years of project management and quality assurance in the private sector, before retraining as a counsellor and working in public services, in prison, probation, homelessness, addiction treatment and mental health services in the community, where I managed and developed wellbeing services as a senior manager. When my situation at work as a senior manager deteriorated during successive care episodes for family members, my mental health declined, and I became quite ill.

That was about 10 years ago, during which I have become increasingly engaged in supporting service improvement, leading the development of networks. Half of that time was also spent trying to obtain the right services for me.

"Hope"

I suppose that many people reading this will know from the public service roles in my background that I have encountered many clients who have not received the services they needed and been treated unjustly or inequitably. However, I would like to express how much hope I have for this project, by giving examples of my participation in other contexts. I am in a service user and carer advisory group for the clinical psychology department at Surrey University, where we co-produce training, lectures, course work, support research and programme development and equality, diversity and inclusion work.

In recent years we have improved the recruitment and selection process to make it more accessible and relevant to our values and principles, the qualities we are seeking. The programme now attracts candidates from a much greater range of backgrounds; the advisory group’s work has been favourably evaluated as part of the inspection process and word has spread. It is attracting better quality candidates. This week, I have been interviewing; our candidates are already appreciative of their own journeys from tokenism towards deeply realised engagement with equity principles, but for some the impact of stigma, prejudice and discrimination has obviously damaged self-confidence, just one of the costs of inequity.

The leadership and coaching approach for the improvement model, coupled with  Quality Improvement (QI) techniques, depends for its success on visible leadership across whole systems, data to make visible the baseline and progress of equity improvement, and relational, trauma-informed models that in turn depend on systemic effort to engage with communities, see the whole person and their context and recruit and develop lived experience within systems that recognise and engage. The inpatient services must thus become competent to engage with the community services and understand the journeys their patients and families have made.

If this is accomplished it is my hope that these journeys will result in therapeutic approaches informed by peer work and peer leadership, which will have enduring benefits for clients and communities, and ultimately will reduce admissions and re-admissions.

I am involved in Surrey’s Crisis Concordat, and the police services have adopted a trauma informed model of service at system and operational level which has had a visible impact on their culture, enabling them to lead and support service development by all the partners in the crisis concordat; they have developed their data accordingly to make us more aware and responsive to the needs of the people we serve. Probably the best experience of engagement I have ever had, including my own professional work with thousands of clients, has been the facilitation of the Changing Futures lived experience group by Public Health team within Surrey County Council, especially co-production of a large section of their Joint Strategic Needs Assessment to inform strategy to address multiple disadvantage.

We developed research design and interviewed dozens of stakeholders, informed thematic analysis and developed the strategy together. The work in the MHA QI project offers great hope because it reflects a  priority of policy towards the people who have suffered from disparity in treatment and outcomes based on personal characteristics and social context, and the policy has been given substance and leverage  through the Patient and Carer Race Equality Framework (PCREF), with specific measures to engage with communities, develop and sustain lived experience engagement and involve us in the work. I will return to this hope but now I must express the next part of my experience...

"Concern"

Well, let me call it what it is for me, and say I have mistrust. Countless episodes with thousands of clients as a practitioner and manager, and my own lived experience, confirm that we are often ignored, despite clear evidence of the added value from engagement. It is obvious that collaboration between inpatient and community services will better inform how those services perform, with the potential to stem the rising tide of admissions and make discharge more effective through subsequent support. It is already being done in some regions, producing raised performance within similar or even lower resources.

Through my local involvement I am aware that at Integrated Care System level the data have large gaps and even the researchers sometimes find it difficult to establish reliable baselines. The injustices suffered by black people throughout our care systems are systemic and persistent despite prior policies and evidence mounting over the past few decades and similar systemic problems persist for groups of people with other characteristics.

This seems to me particularly egregious in mental health services, where even the most basic qualifications must include communications with and responses towards clients and carers that respond to their social context.

"Anger"

Throughout my professional work and my lived experience engagement in public services, inequity regarding people with certain characteristics has been increasingly obvious. I first observed this while working in prison, where I noticed that more than half my clients suffered from mental health problems that were not supported. My response was to engage clients in the development of services I delivered, so that I could better meet their needs. In Probation I noticed that sentencing was disproportionate, imposing sentences that were difficult to fulfil and unhelpful in the wider social context, which failed to meet the needs of people with some characteristics. I developed data to challenge the system to do better for people with multiple needs. I found that trauma had higher prevalence among some demographic groups and that multiple needs were strongly indicative of underlying trauma and other problems, especially for women and for black men. Then I worked in homelessness services, including health and wellbeing, addiction treatment and community mental health, where similar disparities emerged. Again, I engaged with clients and their experience always added value to my work.

Having engaged, NHS has provided me with training, as a patient leader, in Quality Improvement leadership and facilitation, and in using data to make the case for change. That case has been made over and over again, in every type of public service: there is no doubt that our systems are not fit to serve the population needs and this has arisen through ignorance, greed and poor governance over decades and centuries.

On a weekly basis I receive published information regarding various aspects of health and social care regarding racialised people, autistic people, people with learning disabilities. Daily, our news shows examples of institutional bias and bullying, abusive corporate cultures, short term inequitable policies leading to greater demand and higher long-term costs than solving the problems by working together collaboratively. It took me 5 years to obtain the welfare and social support and the mental health care I needed. It has wasted the last 10 years of what could have been active professional work, and has imposed huge social costs.

During that time, I was probably assessed about twice per year, mostly inaccurate and sometimes not shared with me, care plans formed without my involvement or cohesion with social support, none involving my partner, on whom the impact of my illness and service failure was disastrous for her physical and mental health. Mostly I felt like I was no longer valued, no one listened to what had happened to me, the effects this had, my longer-term issues, the adverse childhood events, the triggering of deeply traumatic issues.

From my perspective, there have been many missed opportunities. I found it difficult to organise anything, understand anything sufficiently to take action or improve self-regulation. I felt suicidal, often more so after a particularly insensitive round of therapy or inaccurate assessment. I finally reached the right psychologist and had a couple of rounds of treatment, during which she involved my partner and diagnosed an underlying neuro-divergence. My partner has been on a similar loop, which took her two years from the time of my crisis referral to reach the right treatment, and during which none of the services provided me with any information as her carer. She is now awaiting ADHD assessment, which may take 4 years.

"Principles"

My role in the MHA QI core team has provided me with the opportunity to convey how important it is to use relational models that provide personalised, trauma-informed care and establish connections between services and the communities they serve, particularly to engage lived experience, recognise the value of peer support and form a pathway for its engagement in the workforce to become effective and sustainable. Client, family and community engagement has been the bedrock of any achievement I made professionally or as a lived experience advisor.

During my performance of this role, I have had the benefit of joining reflective practice groups facilitated respectively by the Health and Racial Justice Lab (HRJ) and the National Coordinating Centre for Public Engagement (NCCPE) about how to challenge and oppose systemic racism. I have also continued my participation in lived experience groups locally, regionally and nationally. Ther are many examples of good practice going on all around us. My own experiences indicate that engaging us will take up some resources but ultimately will save hugely while improving outcomes.

The best engagement has been driven by principles and values held by organisations as well as individuals. I have seen this in the Changing Futures programme, National Expert Citizens Group and the Clinical psychology training programme.

It is strongly evident in how the members of the core team for the MHA QI project have engaged. Principles are invoked, flexibility is shown, plans enhanced to take into account our feedback.

"Excellence"

The hall marks of excellence are shown in the creation and sustaining of principles and values indicative of an underlying culture that has aims and goals within a belief system that expediency is not good enough, increasing effort under pressure to be responsive, flexible, adaptive and humane.

If I have become impatient or angry in our teamwork, the response from my colleagues has been to use their skills to bring me back to our principles and release my energy from frustration into creativity. Research confirms that experiences of stigma, prejudice and discrimination are bad for our mental health; it also confirms that these experiences suppress our ability to oppose these in the workplace.

I am delighted that one of the interviewees gave a specific example regarding diversity practice of raising a challenge towards “othering” and micro-aggressions which was skilful in navigating unequal power and resulted in senior intervention to make clear what the organisational values are to the team and to the individual concerned.

Returning to "Hope"...

My hopes are that the Trusts will engage their wider systems to improve cultural competence by engaging with community organisations and individuals; they will improve their recruitment, selection and training, embedding lived experience, and cultivate a career pathway for professional development of peer workers and peer leaders.

Some of the Trust leaders have expressed dismay with the idea of tackling the HR end of that task. I wish them well. My local Trust has shown varied responses ranging from enthusiastic engagement that produces change in procedures, through luke-warm effort that lacks thrust or just pays lip service to negative, tokenistic or hostile responses to our requests to make engagement meaningful.

I hope the Trusts will improve their practice, seeking more meaningful engagement with clients and carers, more meaningful feedback and data to inform their reflective practice and quality improvement cycles, involving multi-disciplinary models engaged with community as well as inpatient care. Their models will be integrative, personalised, trauma-informed and responsive to social context. They will conduct ongoing research and share learning through collaboration with community agencies.

Outcomes and post-discharge support will improve. In time, this will reduce crisis and re-admission, reducing work pressures, providing safety, and making the job more satisfying. Power imbalances will be reduced, empowering practitioners and clients to work together more effectively.

Ultimately it is in our respective hands to seize this opportunity.

Author: Eleanor Levy (Mental Health Advocate, Lived Experience Practitioner & member of MHA QI Delivery Team, CMgr MCMI;AP APM)

To learn more, please don't hesitate to reach out to us at mhaqi@thepsc.co.uk