"We cannot afford to wait" - a call to prioritise support for people living with severe mental ill-health

Posted by Dan Steward, Research Assistant at Newcastle University, and the WHOLE-SMI Community Advisory Group and research team, for Mental Health Awareness Week

Fuse colleagues advocating the words of public contributors in mental health research

People living with severe mental ill-health (SMI) often face profound inequalities in both their physical and mental health - and the systems designed to support them are not always equipped to meet their complex needs. That is why we launched WHOLE-SMI (Wellbeing and HOListic health promotion for people with Severe Mental Illness), a programme of research led by Fuse researchers at Newcastle University, focused on understanding how services can better support the whole health of people living with SMI.

Our work set out to answer a vital question: How can we use the resources we already have to do more for those who need it most?

To find out, we engaged with a wide range of voices across the North of England: people with lived experience of SMI, those who commission services, GPs, and frontline staff. We wanted to understand what support is currently available, what the biggest challenges are in accessing it, and how services could be improved. This collaborative approach gave us deep insights into what is working and where real change is urgently needed.

At the heart of our project was a community advisory group made up of individuals with lived experience of SMI. This group worked alongside us from start to finish. They helped shape our questions, guide our focus, and ensure the findings reflected what really matters. Their input was not just advisory - it was transformational.

Together, we identified the most important messages from the research and created clear, compelling headlines to communicate them. We also co-wrote a letter to Prime Minister Sir Keir Starmer, urging the new government to take immediate action. With the recent announcement that NHS England will be abolished, we believe this moment is critical. There is a unique opportunity to rethink how health services work for people with severe mental ill-health, and we must not let it pass us by.

"We need you to be an advocate for those living with poor mental health and be compassionate and vocal in committing to service improvements." 

                                                          Quote from the letter to Prime Minister Sir Keir Starmer

We share our open letter respectfully, but with urgency. Too often, people with SMI are overlooked or underserved. They deserve care that supports all aspects of their health: physical, mental, emotional, and social. We hope this work sparks meaningful dialogue and real change in how services are designed and delivered.

Please read more about the WHOLE-SMI programme and access our findings here.

If you would like to get in touch, please contact Professor Emily Oliver.

Because no one should have to wait for the support they deserve.

Read the full letter below

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Understanding the ‘zoppie buzz’ in Teesside

Posted by Hannah Poulter, Teesside University, Visiting Research Associate, University of Bristol

Hannah's post coincides with International Harm Reduction Day, which is observed each year on 7 May and is dedicated to harm reduction approach to drug addiction.

At the conclusion of our research into Heroin Assisted Treatment (HAT) in the North East of England, so many questions remained for me, one of which was: What’s with the zoppie (zopiclone) ‘buzz’ in Teesside?

Teesside gets quite a bad reputation when it comes to drug and alcohol use, which perhaps isn’t surprising when you consider in Middlesbrough you’re more likely to die from a drug related death than a car crash. What we don’t often hear about is the ongoing innovative and groundbreaking work to create solutions to complex problems such as those spanning multiple public budgets - health, justice and social care.

Through our research on HAT we got an insight into the havoc caused by street tablets (such as zopiclone) in Middlesbrough, a story also found in other places within Teesside and further afield. Street tablets are defined as illicitly manufactured prescription-like tablets (that look similar to prescription medication in packaging) bought from illicit sources (street dealers) and used without medical advice.

The prevalence and availability of street tablets here, such as zopiclone, combined with their adverse health consequences and impact on treatment engagement makes a rather toxic combination of risk factors for people who are already vulnerable. I feel empathy for both the marginalised people struggling with their addiction to street tablets (amongst other substances), who felt that there was no feasible offer of treatment for them and the healthcare practitioners tasked to support them, with little advice to draw upon beyond ‘don’t take them’.

While we found there were pockets of great work being undertaken, we also saw that the work wasn’t particularly joined up and that there were lots of gaps in knowledge:

• What was the appeal of zopiclone in Teesside, a seemingly unique feature of the local drug market here?
• What do people who use street tablets think could be done to help improve treatment?
• How could we increase knowledge, collaboration and capacity between local practitioners, academics, people with lived experience and the police to address this public health issue together?

As an Early Career Researcher with a ‘non-standard’ research career (I had a career in business development, research and policy in the housing sector prior to re-entering higher education), I was both confident and daunted by the prospect of leading a project in this area.

Confident because I was sure I could achieve this as I had led on, and been part of many projects focused on collaboration, capacity development and research in the past. Daunted because this was one of the first projects I had led in my own research area as an academic, and I wanted to prove that I was able to do so alongside delivering academic outputs and impact.

I feel proud and relieved now this project is over and am incredibly delighted that we delivered extra value for the funders alongside some solid impactful work in this important area. Here’s a summary of our work:

Engaging people who are often less well represented in research and involving them in the process and co-production of solutions to addressing street tablet use.

One workstream of this project used Community Based Participatory Research with a lived experience researcher, Peter DaSilva from Recovery Connections. With Peter’s knowledge of the local drug market, operating context, and behavioural factors we were able to engage some of the most marginalised people at risk of a drug related death into the research process.

I am so passionate about lived experience recovery organisations and their crucial work using lived experience to engage and retain people in treatment. We have a publication on this currently under review with the Harm Reduction Journal.

Understanding the harms associated with zopiclone use and unique features of the zopiclone market in Teesside.

Several smaller spin off projects have been developed as a result of this grant. We delivered two student projects which involved speaking to healthcare practitioners (HCPs) in Teesside about their perceptions of street tablet usage. I’m currently working with Dr Jenny Scott at the University of Bristol to combine our data with a larger multi-site project on HCP insights, funded by the Economic and Social Research Council. To support the completion of my Stage 2 Doctorate in Health Psychology I’m conducting a rapid review of the existing evidence base on zopiclone. Another paper we have nearly completed is one analysing prescription rates to understand how changes to safe prescription of zopiclone may be associated with the illicit market. Through this portfolio of work we will have a much better understanding of the unique features of the zopiclone market in Teesside.

Developing ways to share information and access better technology within Teesside for real-time testing to help reduce harms and overdose risk for people who use drugs.

Key relationships and mechanisms of information sharing have been built, improved and solidified through this project. Dr Gillian Taylor (Teesside University) has been testing locally seized samples such as zopiclone and pregabalin to improve local knowledge sharing. Gillian and I have worked with Joanne Russell from Public Health South Tees supporting their establishment of the Local Drug Information System in Middlesbrough such as the standard operating procedure. Dr Taylor is now sharing testing information of locally seized samples to supplement local overdose alerts and has a formal relationship with Cleveland Police which she has developed as a result of engaging on this project.

Better knowledge exchange between academics, practitioners, and policy makers locally, regionally and nationally.

Local regional and national connections were key ingredients to this project and have led to knowledge exchange beyond the remits of this funding stream. The connection which has personally stood out for me, has been with the team at University of Bristol, led by Professor Graeme Henderson, Professor Matt Hickman and Dr Jo Kesten. Through engaging with them on this project, I was appointed as Senior Qualitative Researcher within the School of Clinical Epidemiology and Public Health at Bristol between September 2022 and March 2024 on their project: Opioid overdose deaths: Understanding the lethal interactions between benzodiazepines and opioids to develop new harm reduction strategies funded by the Medical Research Council. I have learned so much from working on this project, and from my colleagues, which I hope will lead to other projects in the future. We are currently writing up the outputs from our qualitative work, have presented our findings at the Society for the Study of Addiction conference in 2023 and our team presented our work at the European Conference on Addictive Behaviours and Dependencies in Lisbon in October 2024.

Where next?

Now this project is over, (and following me being on maternity leave for a year), we are working on writing up the key outputs from our work. Our ultimate goal is to improve the offer of care for people who use drugs in Teesside and beyond.

What I’ve learned from this project is that we can only do work of this nature, with the right funding, and right support from senior members of Teesside University and local decision makers. Having the funding to support me to completely dedicate one day a week to capacity building enabled by the Targeting Health Needs grant from NIHR Clinical Research Network, gave me brain space from my busy role within the Evaluation and Impact Team, was transformational. It takes time to create good quality dedicated multidisciplinary and translational research, and often the intangible but important factors in this process such as ‘connection building’ can take the most time.

The Heroin Assisted Treatment (HAT) study was funded by the National Institute of Health and Care Research (NIHR) Applied Research Collaboration (ARC) North East and North Cumbria (NENC)

Targeting Health Needs project funded by National Institute of Health and Care Research [NIHR] 2022/23 Clinical Research Network (ref: 17969707). 

Over the rainbow: research with an intersectional perspective

Posted by Dr Mark Adley, Research Associate, Newcastle University

• LGBTQ+ is an abbreviation for lesbian, gay, bisexual, transgender, queer or questioning, with the "+" sign recognising the multiple permutations of sexual orientation and gender identity.

• Intersectionality looks at how social inequities such as racism, sexism, or classism can interact and shape people’s social experiences.

"Reaching Out", pencil and pen drawing and digital collage by artist Sarah Li (2024)

In this Question and Answer blog, Mark shares some of his reflections on intersectionality when working with marginalised groups, and the importance of taking extra steps to make sure that the quieter voices are also heard. LGBTQ+ people are not a single group, and sexism, racism, classism and other social inequities can create unexpected intersections.

What was the focus of your PhD research project?
My PhD examined marginalisation in health and social care services in North East England, specifically looking at multiply marginalised LGBTQ+ people – those who had faced additional experiences of, for example, homelessness, substance use, racism, or domestic abuse. Seventy-two people across the region took part in interviews – 33 with professionals and 39 with marginalised LGBTQ+ people.

How would you explain intersectionality to someone new to the concept?
The shortest explanation would be that 1+1 does not equal 2. Intersectionality examines how different aspects of our identities can interact – creating unique experiences of discrimination. For example, a Black woman's experience isn't simply the addition of being Black plus being a woman. She may experience racism differently than a Black man, and she may experience sexism differently than a White woman. Her experiences as a Black woman are a unique intersection of race and gender. As Zora Neale Hurston perfectly captured in 1928: ‘I feel most coloured when I am thrown against a sharp white background’.

What challenges did you face in participant recruitment?
One major challenge was ensuring diverse representation. I noticed early on that lesbians and bisexual women were underrepresented, so I paused recruitment to address this. This led to an unexpected complexity – navigating the cultural and political debates around gender identity, particularly around use of the word ‘woman’ – and how to distinguish between cisgender and transgender women without causing offence.

How did you handle the sensitive terminology around gender identity?

It required extensive consultation with five women who held different perspectives on this issue. We eventually reached what I'd call a diplomatic compromise on language – while no one was completely satisfied, no one was seriously offended either. This highlighted the importance of careful navigation in sensitive cultural debates.

Recruitment flyers for lesbian, bi, queer, and pansexual women (left) and LGBTQ+ people of colour (right)

What adjustments did you make to ensure racial diversity in your study?

By March 2023 I had interviewed nine LGBTQ+ people from non-White British backgrounds, but only six were from non-White ethnic groups. After reflecting on the specific experiences of discrimination and invisibility shared by LGBTQ+ people of colour, I paused recruitment again. Following consultation with queer people from ethnically minoritised groups we rebranded the study, including removing rainbow imagery in favour of a brown background, as the rainbow was perceived as ‘very White-presenting’.

What key lessons did you learn about conducting research with an intersectional perspective?
The research required a constant shift in my own focus as a researcher. First, looking inward through reflexivity – examining my own unchecked biases and assumptions and their impact on how the study was conducted. Second, looking outward to understand the broader systems of power that influenced people’s experiences of marginalisation. It's a complex balance that requires both zooming in and out, while avoiding what has been called the ‘fetishization of complexity’.

The study’s key findings and recommendations

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Findings from the study are available in several formats

PDFs can be downloaded from the project’s website, with videos on YouTube and an Open Access scoping review published in BMC Health Services Research. Mark is involved in ongoing work exploring the experiences of LGBTQ+ people of colour, and collaborations with local organisations in consideration of intersectionality across the North East and Cumbria. To contact Mark or receive project updates via the mailing list click here.
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This study was funded by the National Institute for Health and Care Research (NIHR) Applied Research Collaboration (ARC) North East and North Cumbria (NENC) (NIHR200173). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.

How our ‘test & learn’ prototypes are strengthening Social Prescribing

Posted by Ang Broadbridge, Head of Implementation at Ways to Wellness, on #SocialPrescribingDay

Evaluation is often something that happens at the end of a project, but what if we built learning into the process from the very start?

At Newcastle-based charity Ways to Wellness, we believe that embedding a culture of learning from the outset helps social prescribing link workers share real-time insights, refine approaches, and ultimately improve support for the communities we serve.

One area where this model has been used is in maternal mental health

Co-designing for impact

A core part of our work is connecting with local communities to shape and refine prototypes that align with our mission:

• Improving health and wellbeing
• Tackling health inequalities
• Reducing demand on NHS services

To ensure our link workers could share learning, develop key messages, and highlight gaps in services, we adopted the Learning Communities model. As described in the Learning Communities Handbook, these are:

"A group of peers who come together in a safe space to reflect and share their judgements and uncertainties about their practice and to share ideas or experiences to collectively improve."

To embed this approach into recruitment and training, we:

• Included an expectation for link workers to actively engage in Learning Communities
• Encouraged participation in ‘test and learn’ approaches
• Provided ongoing support and facilitation to foster a sense of ownership and belonging.

This approach helped link workers collaborate across different host organisations, spanning locations across the North East and North Cumbria.

Extending learning into maternal mental health

One area where this model has been used is in maternal mental health. After eight months of Learning Community meetings, we expanded this approach through a series of external learning events. These events:

• Shared early insights from our maternal mental health prototypes
• Brought in new partners to co-develop next steps
• Strengthened cross-sector collaboration

A key learning was that while social prescribing is well known in GP practices, it was midwives and health visitors who played a crucial role in referring parents to our prototypes - roles that hadn’t previously collaborated with link workers.

By opening up new referral pathways, we helped develop best practices for integrating link workers into maternal healthcare settings.

Turning insights into action

Our Learning Communities aren’t just discussion spaces - they drive change. Link workers use them to:

• Identify barriers in accessing social prescribing
• Test new ways to connect people with support
• Share insights at external events and policy discussions

The impact has been tangible. For example, after testing different approaches, some link workers are now based in health appointment clinics - an innovation that has improved system-wide connectivity and access to services.

Why this approach matters

By embedding a culture of continuous learning, we are:

• Strengthening partnerships across health and care sectors
• Ensuring services are designed with communities, not just for them
• Maximising the impact of social prescribing

At Ways to Wellness, we believe that the voluntary sector, healthcare services, and community organisations must work together to tackle health inequalities.

That’s why we’re committed to testing, learning, and adapting - so that social prescribing continues to evolve, improve, and reach the people who need it most.

Find out more at: waystowellness.org.uk

Image credits: Ways to Wellness Limited company number: 08798423

Bringing dietetics into Public Health

Posted by Alex O'Connor-Sherlock, MSc Dietetic student, Teesside University.

Introduction by Steph Sloan, Senior Lecturer in Dietetics and Course Leader MSc Dietetics at Teesside University.

Practice-based learning (PBL) is a key part of dietetic training, with students required to complete 1,000 hours of hands-on experience in a practice setting. Traditionally, this has mostly taken place in NHS settings, with students working one-on-one with supervisors. However, as healthcare demands grow, diversifying placement opportunities is becoming increasingly important - not just to support student learning, but also to strengthen public health initiatives.

Suited and booted to present to a factory workforce

The Allied Health Professions (AHP) Strategy for England highlights the role of AHPs in disease prevention and health promotion, helping to reduce the burden on already stretched health and social care services. Diet-related diseases remain a major public health challenge, yet dietetic care is still largely focused on treatment rather than prevention. If the profession is to play a greater role in supporting population health, then equipping students with strong public health knowledge and skills is crucial.

To support this, Teesside University’s MSc Dietetics programme now includes public health placements alongside traditional NHS clinical placements. Here, Alex shares her experience of working in a Public Health practice-based learning setting. A must read in National Careers Week for anyone considering a future career as a dietitian!

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What I worked on

During my placement, I was involved in three projects focused on health improvement and disease prevention. My work involved meeting with stakeholders, conducting research, presenting findings, and engaging with the public. The projects covered a wide range of population groups, including expectant mothers, school-age children, local workforces, and food bank users.

1. Supporting parents with child nutrition

A key part of my placement involved reviewing the nutrition education available to parents of children aged six months to four years.

What I did:

• Conducted a literature and policy review
• Spoke to parents, NHS staff, and school representatives
• Attended a breastfeeding class to hear directly from parents
• Presented my findings to several teams, including the Director of Public Health

Why it matters:

The insights from this work will help shape future research and improve nutrition support for families in the local area.

2. Linking oral health and nutrition

There is a strong connection between what we eat and oral health, but not everyone has access to clear, easy-to-understand information about this link.

What I created:

• Infographics and presentations to educate local workforces
• Materials designed in an easy-read format, avoiding jargon

Why it matters: 

My presentation was really well received, and I was even asked to record it for wider distribution, so it could be shared with professionals working with children and people with additional needs.

 

Infographics to educate local workforces

3. Reducing food waste in a local food pantry

Many food pantry users rely on short-dated products, and without clear guidance, a lot of good food can go to waste.

What I did:

• Designed simple, visual signs with food storage and cooking tips (e.g. "Chop me then freeze me")
• Introduced a ‘Freeze me’ sign for bread and monitored its impact

What happened?

Twice as much bread was sold the day after the sign was put up compared to the previous two weeks combined!

Signs made to reduce food waste

What I learned

• Public health plays a key role in patient care - I saw first-hand how wider social factors impact people’s ability to manage their health and access services.
• Being proactive is crucial - I reached out to stakeholders independently, which helped me build confidence and leadership skills.
• Flexibility is a great learning experience - managing my own projects and working in a less structured environment improved my time management and adaptability.
• Self-care matters - the flexibility of this placement meant I could work in different settings, including from the park on sunny days!

Final thoughts

Introducing dietetic placements into public health settings is a win-win. It helps students gain a broader skillset, supports NHS capacity, and brings dietetic expertise into community settings.

Of course, doing things differently comes with challenges. Expanding placements into public health settings has required commitment from everyone involved - academics, placement providers, and students. But we’re constantly learning and improving, and we’re proud to be making a real impact on the health of our local communities.

Our experience co-producing a zine with LGBTQIA+ young people

Posted by Scarlet Hall, Research Assistant, Durham University and Fuse

We have been collaborating with LGBTQIA+ young people in the North East and South Yorkshire, through Fuse led research funded by the NIHR School for Public Health Research (SPHR) exploring how physical activity spaces could be more joyful and safe. This blog describes how the ‘Moving Spaces’ zine was made and makes suggestions for those wishing to co-produce creative research outputs.

This blog draws from reflective conversations between Caroline Dodd-Reynolds (Fuse), Mary Crowder (University of Sheffield) and Shevek Fodor (Sounds Like Shevek) during the making of the zine. It is written with contributions from Caroline, Mary and Shev.

Seek continuity between research methods and research outputs

At the start of our research project we knew we wanted to host a series of research workshops and then co-produce a physical activity resource with the young people we were working with. After seeing the results of using visual creative approaches in our workshops, we knew we wanted a highly visual and creative resource that would connect and resonate with people.

Shevek Fodor

Working with the right designer and format

We sent an advert out to LGBTQIA+ networks for a graphic designer who would understand the lives of diverse LGBTQ+ people, in particular young neurodiverse people. When Shevek Fodor shared their zines with us our eyes and hearts lit up. We invited Shev to lead on making a collaborative zine. We chose the zine because of its DIY ethos, radical history of self- publishing and as a vehicle for self or group expression of thoughts and feelings.

What is a zine?

Zines originated through people writing letters and sharing information about things they were driven and passionate about. They’ve been used as a way for people who were overlooked within mainstream media to have their voices heard.

Practice reciprocity

We thought the young people would be inspired meeting Shev, a young neurodiverse queer artist. For Shev, this role offered a new opportunity to experiment with collaborative zine-making in a research setting. We offered hands-on guidance (budgeting, finance systems, mentoring) as part of co-production principles of reciprocity. We introduced Shev to the young people prior to the zine session and their curiosity was piqued…’is this person one of us or one of them.…?’

Involving artists at later stages of research is not straightforward. We aimed for a balance between giving Shev space to design and lead the sessions while also sharing our own knowledge, ideas and learning. The trust built in earlier research workshops meant we could also pass on an established  quality of ease in the group when it came to the zine making workshops.

Trust the creative process of each person and the group

Shev laid the zine making table out in a beautiful, organised chaos of found images, stickers, magazines and cards. Young people made creative contributions to the zine, inspired by earlier conversations about physical activity. They found ways to take part and to also hang out in their safe space – which we were encroaching on. Some people chewed and chewed over the right words to express themselves with contributions coming together at the end. One person got stuck and did their piece later with a youth workers’ support. Two zine contributions were made that involved multiple voices, through Scarlet documenting conversations around particular images. Scarlet also made contributions from a researcher’s perspective. Shev took these contributions – writings, drawings and collages – and wove them together into a first draft.

Allowing the time for collaborative editing – it brings difference into conversation

We shared this draft with the youth groups, the SPHR and Fuse communications teams and academic colleagues. We received a lot of feedback – the zine was provoking conversations. The young people gave detailed feedback on what they liked, what was missing, and sequencing of ideas. They spoke the words that became the introduction and expressed their small hopes for a few people to engage with the zine. There was a thoughtful conversation across the youth groups, about whether to personalise individual contributions or depersonalise to show that it could be any LGBTQIA+ young person saying this.

Academic colleagues also read and shared reflections with us, including feedback that policymakers might struggle to engage with the zine’s non-linearity and various people suggested we include a page of key take-home messages and recommendations ‘so things don’t get lost’. The young people responded to this feedback saying that people needed to listen and pay more attention to the messages that were implicitly in there. This dialogue led to the writing of a framing document for the zine. 

Value queer embodied theory and practice 

Another dialogue arose around authorship. Some reviewers found it confusing not knowing who had written what and had a strong wish to know who – a young person or adult – had written different bits – a desire perhaps for a clear identification of distinct voices. For Scarlet, a queer researcher, the ‘queer polyvocality’ (Brice et al., forthcoming) of the zine – many voices that weaved together in to more than sum of their parts – reflected queer practices of overflowing notions of stable identity, disrupting predetermined binaries and unsettling ideas of authenticity (Lescure, 2023).

This somewhat aligned with ideas from the young people. For some, there was a wish for attribution so ‘friends and family would know I made this’, and there was also a wish for zine contributions to be unnamed ‘because any queer young person could have made any piece’ and ‘we made it all together’.

One young person said they appreciated that researchers ‘weren’t butting in with your opinions but also giving your views when right to do so’ and another adding ‘it’s important that the adults’ voices are also in there as you were part of the conversation, and some adults have also had similar experiences’. The young people decided to make creative doodles in place of signatures which were mixed in with academic doodles/logos to show the talking and making and editing together – the polyvocality – of the zine making process.

Through this collaborative editing process (over three months), the young people began to converse indirectly with interested adults who wanted to help, including with the funders. These conversations happened with the young people keeping editorial control. We sense this may open up and shape more generative future encounters between these young people and further influential adults.

Indeed, some of the young people involved have made a plan to hand deliver zines to local venues around town (hairdressers, surgeries etc.). It seems empowerment and co-ownership inadvertently leads to physical activity!

Explore the zine

To find out more about this work, please contact Scarlet scarlet.hall@durham.ac.uk or Caroline caroline.dodd-reynolds@durham.ac.uk 

References

Lescure, R.M., 2023. (Extra) ordinary Relationalities: Methodological Suggestions for Studying Queer Relationalities Through the Prism of Memory, Sensation, and Affect. Journal of Homosexuality, 70(1), pp.35-52.

Brice, S. Marston, K. Wright, R. and Hall, S. (forthcoming). ‘Mycelial Love’ in Harrison, P. Joronen, M. and Secor, A. Love and Catastrophe in Cultural Geography. Edinburgh University Press

When stigma came to town: why a quick fix can never work with a life-long problem

Posted by Ian Treasure, Programme Manager, Changing Futures Lancashire and Cassey Muir, Research Associate, Newcastle University

“When you point a finger, three point back,” a member of our Lived Experience panel said while discussing stigma. Stigma is often invisible, yet it shapes how people perceive themselves and are perceived by others. This saying reminds us that before we judge others, we should first reflect on our own behaviours, actions, and beliefs.

 

The Changing Futures Lancashire Programme and taking a trauma-informed approach

The Changing Futures Lancashire (CFL) programme was one of 15 areas in England chosen to receive funding to test and learn approaches to supporting adults experiencing multiple disadvantage. Anyone experiencing three of the following five conditions were able to access our services:

• substance misuse
• homelessness
• criminal justice involvement
• poor mental health
• domestic violence

CFL was a follow on from Fulfilling Lives which also supported this cohort. CFL was different as it was funded through local authorities in an attempt to gain more traction for system-wide change needed to support a seldom heard group. The funders were Ministry for Housing Communities and Local Government (MHCLG) and The National Lottery Community Fund.

Nationally, we focused on measuring improvements for the people we support, how well services work together, and how decisions are made at a higher level. The aim was to create significant changes in the system so that people with complex needs can access the support they need more easily. We adopted a trauma informed approach in the way we offer and provide support. For example, we understand that individuals who may appear aggressive could actually be scared, confused, or reliving past trauma. This non-judgmental approach not only shapes how our providers assist individuals with complex needs but also affects how the adults we support view themselves.

The majority of beneficiaries (90%+) in the Changing Futures programme face poly-substance use (using more than one substance at a time) as the main condition that developed into multiple disadvantage. Many have shared how chronic drug use often leads to involvement with the criminal justice system, poor mental health, and eventually homelessness. Alongside these challenges, many individuals have experienced parental abuse or neglect. Their negative school experiences, often tied to undiagnosed learning disabilities or other barriers, have also shaped their struggles. Over time, our beneficiaries have developed coping strategies to survive—tools they rely on to navigate a world that often feels unsupportive.

Shining a light on stigma

The CFL Programme has made significant strides in supporting individuals facing multiple disadvantage. However, as we delved deeper into the challenges faced by our beneficiaries, we uncovered an invisible yet pervasive barrier: stigma. This insight shifted our focus and prompted us to ask: 

how can we tackle the stigma that often prevents people from seeking the help they need?

People with lived experience helped shape the CFL model, ensuring that it addresses the needs of those who understand these challenges best. During conversations with our beneficiaries, we found that many initially hesitated to seek help because of the trauma and judgment they felt during comprehensive assessments. We responded by removing this entry barrier, focusing instead on the sharing of information between services followed by a more conversational approach that helps build trust without the fear of interrogation. This small change proved to be a key turning point for many individuals, making them feel more comfortable returning for support.

 

 

Across Lancashire we also have started to shed light on the issue of stigma. We created the powerful and thought-provoking film above featuring people with lived experience and other professionals sharing their stories, which has been viewed thousands of times. One case study highlighted a single mum afraid to visit the pharmacy near her child’s school for fear of being seen picking up methadone by another parent, and the stigma she faces as a result. Another featured a man who is street homeless, sleeping in a public toilet, only to be kicked out by the cleaner in font of commuters. These are painful reminders of some people’s situations and how different they feel from everyone else. It became clear that it wasn’t enough for us to only think about how we tackle stigma across our services, we also had to ask ourselves: what else can be done to prevent stigma and to reduce its impact on individuals?

The CFL board agreed that we should do some credible research into the topic. We sent out an enquiry of interest form and Fuse researchers responded.

Reducing stigma: research findings and key recommendations

The project between the CFL programme and Fuse was to conduct a review of the research into what can be done to reduce stigma for adults who experience multiple disadvantage.

At the heart of our work are the people with lived experience who have been instrumental in shaping our approach. Their first-hand insights have been invaluable not only in designing effective services but also in guiding our research on stigma. Many panel members shared how they overcame their own stigma through achievements like gaining employment, while others still face the stigma of past criminal convictions – something that remains a barrier to moving forward. Their voices are central to the research and the recommendations we’ve developed.

We brought together 51 review papers and found that most focused on reducing mental health stigma. Fewer studies addressed stigma related to drug and alcohol use. There was limited research on stigma linked to domestic violence, homelessness, criminal justice involvement, and poverty. Our panel felt that the findings would be relevant across various forms of disadvantage, reflecting that poor mental health or alcohol and drug use often serve as the primary ways people come into contact with services.

The research we reviewed found that stigma reduction approaches typically focused on:

• individuals experiencing disadvantage and stigma
• practitioners who provide support
• the public

There was little research on system-level changes, such as policy changes, that could address stigma more broadly.

We found that social support, particularly through peer-led or group-based approaches, was highly effective in reducing self-stigma among people facing multiple disadvantage. Peer connections helped individuals build stronger and more positive identities and gain confidence, breaking down feelings of isolation.

Additionally, we discovered that combining educational strategies with contact-based training was a powerful way to reduce stigma amongst practitioners and the public. Educational efforts - such as presentations or information addressing misconceptions about disadvantages - were most effective when paired with opportunities for practitioners and the public to meet and learn from people with lived experience. This combination allowed for a deeper understanding of the challenges faced by those with multiple disadvantages and proved more effective than using either method alone.

We engaged with our Lived Experience panel to discuss and explore recommendations. They came up with eight key recommendations to advance this work into practice:

1. Facilitate peer connections: Provide opportunities for individuals experiencing disadvantage to connect with others who share similar lived experiences. This can help reduce isolation, foster mutual support, and reduce feelings of shame and embarrassment.
2. Promote peer leadership and advocacy: Encourage individuals with lived experience to take on leadership roles or act as advocates within services. This could help challenge stigma and provide role models for others facing similar challenges.
3. Incorporate lived experience in service design and delivery: Actively involve individuals with lived experience in the design, development, and delivery of services to ensure they are relevant, responsive, and inclusive.
4. Embed trauma and stigma informed practices throughout the organisation: Apply both a trauma and stigma informed approach across all levels of the workplace. Training should not only be limited to frontline staff but also extend to managers, supervisors, and directors to ensure everyone is stigma-aware.
5. Ensure long-term commitment to anti-stigma efforts: Integrate anti-stigma interventions into ongoing practice, ensuring they are not one-off sessions. Offer regular refresher courses to reinforce learning and maintain long-term impact.
6. Foster collaboration across services: Promote collaboration between all services to ensure they adopt stigma-aware practices. This includes working together across sectors, such as housing, mental health, and other support services, to create a cohesive approach to addressing stigma.
7. Engage the community: Work on community outreach to raise awareness about stigma and its effects, helping to foster a more inclusive and empathetic environment in the wider community.
8. Implement system-wide change: Advocate for policy changes that address the root causes of stigma, such as social inequalities, and promote fair access to services for all individuals, regardless of their background or circumstances. System-level changes are crucial because stigma isn’t just about individual attitudes; it’s embedded in our systems, policies, and institutions.

We need your help

The insights from the Changing Futures programme and our research are clear: tackling stigma requires a holistic, multi-level approach. By prioritising peer support, lived experience, and trauma-informed practices, we can make real, lasting change. Now, we need your help. Join us in challenging stigma, watch and share our videos, and support this movement. Together, we can create a more inclusive, empathetic society where everyone has the chance to thrive.


Take the next step (useful resources):

• Join the anti-stigma network
• See the presentations from the recent Fuse and Changing Futures Lancashire event - Understanding the impact of stigma and multiple disadvantage, A call to action
• Watch the Changing Futures Lancashire video on stigma
• Watch an animation by Newcastle City Council Adults Safeguarding and Fuse Researchers - Stigma, A Call for Action
• Find out more about Changing Futures Lancashire