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"It saved my life."
Meet the pioneers behind a fresh approach to mental health research.
Meet the pioneers behind a fresh approach to mental health research.
With stark warnings from the likes of the British Medical Association that the UK is in the grip of a spiralling mental health crisis, patients, families, and the NHS are seeking urgent solutions.
But academics at Lancaster University have been pioneering research for decades, helping the NHS deliver better treatments that have improved the lives of millions of people.
Central to their work are the opinions and lived experiences of people living with mental health conditions, including bipolar disorder, depression, and psychosis.
From innovative online toolkits and promoting personalised recovery to a living library of experiences, their work is bringing new voices, approaches, and solutions to one of our most pressing health concerns.
The University’s Spectrum Centre for Mental Health Research in the Faculty of Health and Medicine has been readdressing the balance of traditional clinical approaches to the treatment of bipolar disorder and related conditions by encouraging input from people who have experienced bipolar mood fluctuations, their relatives, friends, partners, and carers.
Professor Fiona Lobban, who Co-Directs the Spectrum Centre alongside Professor Steven Jones, said: “Our research focuses on how people living with bipolar and the people supporting them can help inform our research areas and ultimately improve the clinical services they receive.
“Rather than deciding how to research their condition, we co-design by inviting people to share their experiences. We want to recognise the knowledge and experience held by them and their relatives as they know far more about their condition than any professor or clinician ever will.”
REACT, the Relatives Education and Coping Toolkit, is one example, bringing together the relatives of people with psychosis or bipolar with clinicians and researchers to develop an online self-help package.
Over a thousand UK-based carers accessed the free online toolkit in its first year, with one participant saying, ‘It saved my life. I know that sounds melodramatic, but it saved my life. I feel as if it saved my sanity in a way.’
A recent clinical trial involving 800 relatives found that using the toolkit reduced levels of distress and increased levels of well-being over time, with the benefit of providing information and support 24 hours a day.
Giving a voice to those living with mental health difficulties is the driving force behind The Library of Lived Experience for Mental Health in the North. This living library facilitates conversations between people with lived experience (the books) and people wanting to understand mental health better, including those facing similar difficulties, carers, and healthcare staff (the readers).
Professor Lobban added: “We’re currently studying the likely impacts of a living library and how it might work as a valuable resource for mental health in the North. We’re developing a framework with input from clinicians in the NHS and lived experience experts to train and support the ‘books’, compile synopses with them and ensure they maintain control of their story.
“As a living book, their story is likely to change over time and context, so we need to look at how that story is recreated and the boundaries for the ‘readers’ to ask questions.”
Another place lived experiences are shared widely is in online peer mental health forums. These are online spaces where people talk to each other to seek emotional support and information. The “improving peer online forums” study aims to understand the impacts of online forums and how best to design them to ensure they are most helpful to people.
But their research isn’t just about listening to those with lived experience but using this knowledge to change clinicians’ understanding and treatment of bipolar disorder and other conditions.
The impact of the Centre’s work and that of the Faculty of Health and Medicine is also felt more widely, helping the public to understand mental health difficulties and bipolar experience better.
The British Psychological Society commissioned Professors Jones and Lobban to write ‘Understanding Bipolar Disorder’, which has informed international guidelines for Australia and New Zealand.
Their research also underpins the National Institute for Health and Care Excellence (NICE) guidelines on managing bipolar and psychosis.
This history of pioneering research into a challenging and often complex subject has earned the Spectrum Centre an international reputation.
By working in partnership with service users, Lancaster University has shifted the focus from traditional symptom-based treatment, typically medication, to exploring personal recovery – an essential focus of the Department of Health and Social Care.
Professor Steven Jones, Co-Director of the Spectrum Centre, said: “We’ve been working with service users to explore personal recovery for over a decade and how new interventions from web-based self-management to face-to-face psychological therapy can enhance personal recovery for people with bipolar mood experiences”.
“Rather than a pre-defined or imposed course of support or treatment, there are huge benefits in looking at an individual’s values and goals and trusting in their decisions and choice of support. Recovery is a journey about ensuring support addresses what matters most to the person. Mood swings and conflict may be part of that, so recovery focuses on techniques that will help people live as well as they can.”
Despite growing evidence for the effectiveness of individual psychological interventions for bipolar, research on recovery-focused interventions for bipolar across the lifespan is lacking.
The Spectrum team have worked with service users to develop a free self-report measure to assess personal recovery, used in clinical practice and research trials. They have also created recovery-focused therapy to support improved recovery outcomes for people with bipolar.
This intervention is based on intensive work with service users to create a support method consistent with their individual needs and priorities. The acceptability of this intervention and its positive impact on personal recovery has been demonstrated in a research trial led by Professor Jones.
They found that recovery-focused therapy and their usual treatment enhanced personal recovery by over 80%, with positive clinical outcomes on mood swings, the time between relapses and day-to-day functioning.
Professor Jones added: “Understanding the lived experience of people with bipolar is the key to improving and enhancing support. Our research has proved that interventions to empower people to manage their moods and worry less about their mood swings could facilitate better personal recovery.
“While achieving control over symptoms and mood changes does have benefits, it’s about looking at the person, their quality of life and what is meaningful to them. That’s why improving access to psychological therapies is vitally important.”
There is evidence for the acceptability of this approach with older adults in a Spectrum Centre trial led by Dr Elizabeth Tyler as part of an NIHR-funded Doctoral fellowship involving Jones and Lobban.
Conditions like bipolar often run parallel to other health problems, leading Lancaster’s experts to explore links to areas including poor dental health and alcohol problems.
2020 saw the most significant increase in alcohol-related deaths since records began. Senior Lecturer in Mental Health, Dr Laura Goodwin, is currently investigating alcohol use in people with mental health conditions.
Dr Goodwin, whose previous research proved a link between conditions like depression, anxiety and PTSD with heavy drinking in military veterans, said: “We know that people use alcohol to help cope with mental health problems and that drinking too much can make your mental health worse, but we know less about the future health of people who have both these problems, estimated to be around 1m people in England, who might not be able to access the support and treatments they need.”
Her latest research explores the links between alcohol use, mental health, and ethnicity. By looking at specific ethnic categorisations, including Pakistani, Indian, Black Caribbean, and Black African groups, Dr Goodwin and her team have identified which groups are more likely to drink at harmful levels when experiencing psychological distress.
Dr Goodwin said: “There are differences in the level of alcohol use across ethnic groups, and as I’ve found in previous research, people with mental health issues from minority ethnic groups drink for a variety of reasons including enjoyment, to fit in socially and to cope with previous trauma.
“There were also reports of encountering stigma from family and communities. Often people don’t want to disclose the amount they drink in front of friends and family or a local translator.”
She added: “I’m particularly interested in the lived experience of people with mental health problems who drink heavily and how having both conditions can affect their pathway through support services and recovery.
“Typically, mental health support is a separate service to drug and alcohol units, so people are passed between services with either their mental health or their drinking having a huge impact on the other which isn’t always recognised through this system.”
Through workshop sessions with service users Dr Goodwin and her team found the most common treatment route was alcohol followed by mental health support, which might not be the most appropriate.
Similarly, the team identified ways of improving that first contact between service users and clinicians, recognising the importance (and possible impact) of family members and carers who might be in attendance.
Dr Goodwin said: “As with any research, if you don’t ask, you don’t know, which is why the voice of people with lived experience is so important and influential to my work and many within the University.
“The problem is many people don’t know how to ask someone about their alcohol use because it is a stigmatised issue, so the more research and information we can provide to health care providers, the Police and others as to how to approach and support people with mental health and alcohol issues the better.”