Showing posts with label lived experience. Show all posts
Showing posts with label lived experience. Show all posts

Thursday, 5 February 2026

More than quit rates - our smoking research was about complexity, trust, and real voices

Posted by Angela Rodrigues, Associate Professor at Northumbria University, and co-lead of the Fuse Behaviour Change Cluster, and Team

By the time we wrapped up our final interviews, we felt a mix of pride, exhaustion, and curiosity. Pride because we’d managed to complete a complex mixed-methods evaluation across four pilot sites. Exhaustion because, well, public health research never seems to run smoothly, and we had a few recruitment bumps along the way. And curiosity because we still weren’t sure how all the pieces would fit together. This was a mixed-methods evaluation of a 20-week smoking cessation service in the North East & North Cumbria.

The context: why this service mattered

When we first got involved, the idea was simple: evaluate an enhanced stop smoking service designed specifically for people living with severe mental illness (SMI). People with SMI experience stark health inequalities. On average, they die 15-20 years earlier than the general population, largely due to chronic physical health conditions rather than psychiatric causes. Smoking is a major reason for this health gap, and it is something that can be changed. Yet many tobacco dependence services do not adequately meet their needs.


The service offered more support than the standard provided by the local council, combining behavioural support with medication-assisted treatment over 20 weeks. It followed a ‘cut down to quit’ model, and aimed to be person-centred, flexible, and responsive.

Our approach: mixed methods and lived experience

We used a mixed-methods approach, including quantitative analysis of recruitment and outcomes, surveys with service providers, qualitative interviews with both staff and service users, and a review of Smokefree Taskforce documents. We started with a well-defined plan, but the process taught us to embrace flexibility. Recruitment was slow. Referral pathways shifted. Data systems didn’t always talk to each other. And finding service users willing to be interviewed was harder than we expected.

One of the most rewarding aspects was working with our Lived Experience Advisory Panel (LEAP). They helped shape our protocol, refine our interview questions, and interpret findings. Their input reminded us why we do this work. It’s easy to get lost in methodological frameworks, but the real insight often comes from lived experience. One LEAP member words stuck with us:
“You need to understand what it’s like to be told to quit smoking when smoking is the only thing that gets you through the day.”
What we found: complexity at every level

The Behaviour Change Wheel framework (figure 1) helped us make sense of what was happening on the ground. Service providers used a range of strategies, including medication, leaflets, nicotine e-cigarettes, planning, and social support. Most felt capable and motivated to deliver the service, but some found it more harder than expected. Complexity was a recurring theme, as illustrated in one advisor words:
“It’s not just about smoking, it’s about everything else going on in their lives.”
Figure 1: Visual map of key themes identified in our study

We also saw how broader systems shaped delivery. Some sites had strong links with primary care; others struggled. Data recording was patchy. Staff wanted more training, not just in smoking cessation, but in understanding mental health complexity more broadly. And while the service was designed to be flexible, that flexibility sometimes created confusion. Who was eligible? How long should support last? What counted as a successful quit?

For service users, the benefits were clear: 
  • better physical and mental health
  • financial savings
  • fewer unpleasant smells
  • and fewer side effects than expected.
But staying engaged was tough. Motivation fluctuated. Life got in the way. Participants reminded us regularly that behaviour change doesn’t happen in a vacuum:
“I wanted to quit, but then my meds changed and everything fell apart.”
The challenge and value of qualitative work

Personally, we found the qualitative interviews both the most challenging and the most illuminating part of the process. Some participants were open and reflective; others were more reserved and required extra support and reassurance to feel comfortable speaking openly, particularly service users. We learned to be flexible in our approach, arranging a casual phone call with service users to build a rapport prior to the interview.

Despite the difficulties recruiting service users, once they were engaged in the interviews, all were eager and willing to share their experiences. We learned that it is important to develop a level of trust with service users, and that patience and empathy can encourage openness and in-depth understanding.

There were challenges too. We had hoped for more interviews with service users, more consistent data, and deeper engagement with those delivering the service. In particular, connecting with service deliverers proved difficult, largely due to the time lag between service implementation and the research evaluation. By the time we began our research, staff had moved on, memories had faded, and priorities had shifted, making it harder to capture a full and accurate picture of delivery. But public health research rarely hands you a neatly packaged story. What it does offer is insight into systems, into people, and into the messy, unpredictable reality of trying to improve lives.

Why it worked: partnership and collaboration


Looking back, we think the study worked because it was grounded in genuine partnership. The Smokefree NHS strategic team were incredible, collaborative, responsive, and deeply committed to making the service work.

We built relationships with service providers who shared their experiences openly, with LEAP members who challenged our assumptions, and with service users who trusted us enough to talk. Within our research team, we supported each other through the inevitable ups and downs. That collective effort, across roles, organisations, and lived experiences, is what made the project feel meaningful.

This experience has already shaped how we’re approaching future projects. Next time, we’ll go in with clearer expectations, more flexible timelines, and a deeper appreciation for the emotional labour involved, not just for us as researchers, but for the people we’re working with.

Researching smoking cessation in people living with severe mental illness isn’t just about measuring quit rates or evaluating service models. It’s about recognising the complexity of their lives, earning trust, and ensuring their voices shape the research process. More than anything, this project reminded us that we, as researchers, must be more attuned, more patient, and more willing to adapt.



About the authors:

Dr Angela Rodrigues, Associate Professor, Northumbria University, and co-lead of the Fuse Behaviour Change Cluster

Dr Lauren Hoult, Associate Lecturer, Researcher in Behaviour Change & Public Health, Northumbria University

Prof Katie Haighton, Professor in Public Health and Wellbeing, Northumbria University

Friday, 10 October 2025

Changing the narrative on gambling harms in the North East

Posted by Dr Andrew Richardson - Research Associate (Gambling Harms), Newcastle University; Alice Beadle, Public Health Specialist - Gambling Harms, Middlesbrough Council; and Laura Sheridan, Public Health Officer – Gambling Harms, Middlesbrough Council


Gambling is staking money, or something of value, on the outcome of something involving chance. Gambling activities can include arcades, esports and video games, betting shops, online betting, gaming machines, lotteries, bingo, casinos and other common types of gambling. Gambling harms affect thousands of people across England but the North East faces the greatest risk. National estimates suggest that 3.8% of people are at elevated risk from gambling. In the North East, that figure rises to nearly 5% of people aged 16 and over - the highest rate of at-risk gambling in the country. These people experience a range of negative consequences, from financial hardship to serious mental health challenges.

To explore the scale and impact of gambling harms in the region, read the Regional Health Needs Assessment for Gambling.

What are gambling harms?

Gambling harms are any negative consequence or side effect experienced because of gambling. They may be felt by the person who is gambling or may be experienced by those close to them, such as a family member, friend or colleague, known as ‘affected others’. For each person who experiences gambling harm, on average six others are affected - often partners and children.

Whilst anyone can be harmed by gambling, it does not affect everyone equally. The harms from gambling are varied and may also be interconnected. They include:
  • Increased stress and poor mental health (such as anxiety, depression and suicide risk).
  • Financial hardship, debt, asset loss and bankruptcy.
  • Relationship breakdowns due to increased conflict, issues with trust and stress associated with harmful gambling. There are also links between gambling and domestic violence.
  • Reduced performance and absenteeism in education and in the workplace.
  • Stigma and shame associated with gambling behaviour.
  • Threatening behaviour, damage to property, fraud and theft.
For many, gambling harms leave a legacy and may be experienced for many years after the event.

A public health approach


The Association of Directors of Public Health in the North East (ADPH NE) Gambling Harms Programme aims to tackle the harm caused by gambling in the North East with a coordinated regional approach. The Programme received funding that originally came from a gambling operators’ penalty but was redirected by the Gambling Commission - called a ‘regulatory settlement’.

Gambling harms are complex, and prevention approaches need to move away from ‘personal responsibility’ to population-wide social, economic and environmental interventions. Messaging from the gambling industry often sets the narrative by placing responsibility onto the individual to address harmful gambling, despite the many ways gambling products are designed to be addictive. This can lead to increased stigma and shame and create additional barriers to help-seeking behaviour.

The Regional Office, a team hosted by Middlesbrough Council, supports the 12 Local Authorities in the North East to pilot prevention approaches to help reduce gambling harms. The Programme has developed resources which include awareness raising materials and evidence summaries to support practitioners in local authority settings.

Eight key priority areas have been established under the Regional Office:

1. Support and Partnerships – Responding to requests from local authorities and wider stakeholders to support understanding of gambling harms and embed prevention activity.

2. Advocacy – Contributing to the shaping of policy at a local, regional and national level by promoting a public health approach to support those impacted by gambling harms and to build an environment that prevents future harm.

3. Media, Communications and Education – Raising awareness of gambling harms and aiming to reduce stigma.

4. Treatment – Promoting regional treatment services and referral routes for residents and professionals across the North East of England.

5. Data, Research and Evaluation – Develop and create evidence bespoke to the North East and contribute literature to the national evidence base regarding gambling harms.

6. Licensing – Supporting planning and licensing colleagues to create environments that prevent future gambling harms.

7. Protecting Young People – Recognising the risks of gambling to children and young people, and developing resources to support caregivers to reduce risks of gambling harms.

8. Lived Experience – Co-producing all outputs with the Lived Experience Forum, made up of members from across the Region. This ensures all outputs reflect real-world experiences and have maximum impact.

To learn more about gambling and gambling harms, please use the ADPH NE Gambling Harms slide deck or access free Making Every Contact Count (MECC) and Gambling Harms training here.

You may also be interested in these national resources:

Learning from others

The North East Programme was inspired by the Greater Manchester Combined Authority and ADPH Yorkshire and the Humber to share findings and best practice. The three regional programmes collaborated on a Language Guide to promote language choices that reduces the stigma associated with gambling.

Building the evidence

The Programme will be evaluated and this will contribute to the evidence base on actions to reduce gambling harms, which is currently dominated by gambling industry narratives. The team is working with local partners to explore the wide range of healthcare services and practitioners who may be in contact with gamblers or people affected by gambling and educational toolkits for schools and communities etc. To learn more, see this academic paper co-authored by Fuse researchers or view a free slide deck that summarises the latest research on gambling harms.

Lived experience

The Programme also facilitates a Lived Experience Forum to help shape work happening across the region. If you have experienced gambling harms, either directly or as an ‘affected other’ and are based in or from the North East, this is open to you. If you would like to influence the work being done to tackle gambling harms in the region, please email GHR@middlesbrough.gov.uk.

Stay in the loop

The ADPH NE Gambling Harms newsletter includes news about events, new research, resources like podcasts and documentaries, and ways to get involved. Join the newsletter mailing list by contacting GHR@middlesbrough.gov.uk or complete the sign-up form here. New resources can also be found on the ADPH NE Gambling Harms website.

Treatment and support

Visit the Gambling Harms MECC page to find treatment, support and blocking tools. For some people in recovery from gambling harms, treatment may be the best option, whereas peer support groups may be better for others. Professionals can refer directly into these services. This may make it easier for those needing treatment and support to take the first step on their recovery journey.



Photo by Michele Lana on Unsplash

Wednesday, 7 May 2025

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). 

Friday, 13 December 2024

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):

Friday, 10 March 2023

North East women share their experiences of inequalities in powerful poems for International Women's Day

Posted by Claire Smiles, Fuse PhD student from Newcastle University and experts by experience Marie Warby and Kayleigh Cookson

Presenters and experts by experience at the Fuse event on International Women's Day 
On International Women’s Day 2023 we at Fuse celebrated by showcasing the lived experiences of women in the North East. This event brought together experts by experience, researchers and practitioners who engaged with presentations, shared experiences and devised top priorities to tackle women’s health inequalities. 

I presented the early findings from the ‘Women’s Sexual Wellbeing’ study alongside wonderful women with lived experience. During my presentation Marie and Kayleigh shared powerful poetry they had written for our IWD Fuse event. Their poetry about womanhood and motherhood reflected on personal experiences and demonstrated the challenges and the resilience of women. A big thank you to Marie and Kayleigh for agreeing to share their poems in this blog post and to Kirsty for taking the videos below.

Catch up with all the discussion on Twitter using #FuseRE and International Women's Day using #IWD2023 and #EmbracingEquity. For more information about the event visit the Fuse website.

** Content/trigger warning: adult language and references to abuse and suicide **


Womanhood by Marie Warby

The road to womanhood wasn’t so kind to me. 

I look at infancy and I see abuse; I look at puberty and I see a noose. 

A very painful past as I recall, I didn’t allow it to stop me, I refuse to fall. 

I felt like an adolescent, stuck in a woman’s body, 

Screaming out hoping someone would hear, my body always stuck in a constant state of fear 

Very submissive that’s what I’d become, all I needed was a way to find home. 

Without a map nor a tool, just a woman to teach me from her school, 

A wealth of knowledge to show me the way, I know ill be powerful and independent one day. 

My inner child is reaching out and ready to kneel, this little girl needs to heal. 

With a blank sheet of paper where do I start, it's time to mend my broken heart. 

I look at my past with no regret, for every challenge of womanhood I’ve met. 

To say it’s been easy that would be wrong, and here I stand singing my song. 

Shining a light for others to see, some days I can’t believe it's me. 

Womanhood is such a beautiful place to be, and now finally I can nurture Marie.


Needs to be everything by Kayleigh Cookson

 

The expectations of a mother is not easy,
I need superpowers and multi-tasking skills.
I have to be a role model and provide a clean tidy house,
I have to budget and pay all the bills.

I need to be very organised,
Always plan ahead every time I go shopping.
I have to be a cook, a baker, I'm never out the kitchen,
And I am a professional at washing.

I need to be brilliant at cleaning,
Wash the dishes, hoover up, pick up mess.
I have to negotiate and play referee,
My patience constantly at test.

I need to be very responsible,
Be a doctor, nurse, councillor, therapist.
I have to be handy at odd jobs round the house,
There's no problem that I cannot fix.

I need to be an expert encyclopaedia,
To answer all the why's, how's, what's, where's and when.
I have to be fun and play lots of games,
Again and again and again.

I need to be a smart tutor,
Help with homework, teach right from wrong.
I have to be a PA, hairdresser, taxi driver,
And always put things back where they belong.

I need to make lots of dreams come true,
I am Santa, the tooth fairy, Easter bunny.
I have to cure boredom on cold and wet rainy days,
Go out and make memories when it is sunny.

I need to be rich with empathy,
Be supportive, wipe away lots of tears.
I have to be a hero and never be scared,
And chase away all the nightmares and fears.

I need to be a care giver,
A good communicator and be able to detect lies.
I have to be an agony aunt and a shoulder to lean on,
I've got to know how to save lives.

I need to be an active listener,
Good at advice and have psychic abilities.
I have to be ready and always prepared,
To provide mental and emotional stability.

I need to be loving and caring,
Tend to wounds, scars, bumps, patch up scrapes.
I have to be a healer and always the best one,
To pick up pieces every time a heart breaks.

I need to be strong, be a survivor,
Put on a brave face no matter the weather.
I have to paint on a smile, show no pain, head up high,
Always cope, always hold it all together.

I need to always have time,
There's no relax, no switch off, no escape.
I have to put everyone's needs above my own,
Oh the guilt if I make a mistake.

I need to never be ill,
Cope with bleeding monthly and raging hormones.
I have to put up with mood swings, hot flushes and cramps,
Then not to mention the menopause.

I need to be forever perfect,
Can't shout or swear coz I'll face stigma and shame.
I have to never go out coz I'll be a bad mam and a slag,
Not worthy, always judged, the one to blame.

The expectations of a mother is not easy,
I need to also then be a friend, a partner, a wife.
I have to be a daughter, a sister, an aunty, a nana,
I am never just me, a woman living my life.

Friday, 23 April 2021

How do we improve diversity in research?

Posted by Vicki McGowan, Research Associate, Newcastle University

Public involvement and engagement in research is not a new concept. Without members of the public engaging with our work as participants, we would not have advanced our knowledge and understanding of the social world over the last few hundred years. More recently the Covid-19 vaccination would not have been so rapidly produced without generous support from the public in giving up their time (and bodily fluids) to advance our understanding. What seems to be a more relatively recent idea is the involvement of the public in developing the research itself and setting the agenda based on their experiences. Newer still is the idea that there should be a diversity of voices at the table where these decisions are made. In 2014 the Due North report made a series of recommendations to address inequalities between the North and South of England.


In order to take forward these recommendations academics across the North developed the Fuse led Equal North network which aimed to build a community of academics, policy makers, and practitioners across the region to work collaboratively on addressing the North-South health divide. This community came together in workshops to identify priorities for addressing this spatial inequality, and around 250 professional participants highlighted poverty, austerity, and unemployment as key research areas to ‘level up’ the northern regions (Addison et al, 2019).

Equal England academic and practitioner priority setting workshop hosted by Fuse

But, this was only one part of the story.

It was an important side of the story, and I’m sure many members of the public would agree that poverty, austerity, and unemployment were – and indeed are – priority topics, but we needed their perspectives to ensure we were developing research that addresses these drivers of inequality and doesn’t widen them further.

But also, we’d been talking about tackling inequality at the same time as maintaining unequal access to decision-making by not including all key stakeholders in the discussion. So, when the NIHR School for Public Health Research funded the expansion of Equal North to become Equal England, we increased our practitioner membership to over 800, but we also ensured that we could take forward recommendation 3 from Due North: 
“Share power over resources and increase the influence that the public has on how resources are used to improve the determinants of health”
The Equal England Public Network was born in late 2019. Following the practitioner model developed in Equal North, we aimed to create a space for members of the public to share lived experiences and influence the work that we do and undertake some public priority setting exercises to see how these align with the Equal North work. We’d also share information about key events, new evidence, and generally keep people updated with health inequalities research as we do the practitioner network.

That was the plan, now the action. How do you develop a diverse network to engage with members of the public with lived experience of poverty, austerity, and unemployment?

One option could be to contact the numerous, and brilliant, existing Public and Patient Involvement (PPI) groups that operate across the country. Why reinvent the wheel? If that wheel only comes in one style and doesn’t fit my bike then we may have a problem. These established groups might not accurately represent the diversity we see in our communities.

Also, these can be established groups that by their tenure already have the confidence and capacity to exert influence over research agendas and I wanted to make sure we had representation from people who don’t usually have their voices heard in the communities that are affected by the priority areas identified through Equal North.

To ensure we were accessible to a diversity of voices we aimed to pilot the network in North East England to build on the Equal North findings and implement three phases:

Phase 1: Connect with local grassroots groups that are embedded in their communities, promote the network at relevant community events, generally get out into communities across the North East and get to know people, develop trust and sign people up to our mailing list.

Phase 2: Invite members to a series of local conversations, present the findings from Equal North and discuss whether people thought these were important for their communities, whether there were other priorities, and what we needed to do to address them.

Phase 3: Co-develop research proposals around these priorities and dissemination activities with academics and practitioners – making sure the public experiences were disseminated widely and incorporated into future planning.

By February 2020, Phase 1 was going well with 35 members of the public signing up to the network. And then…


We were forced to cancel all face-to-face activities due to Covid-19. The country shut down and the vast majority of people I’d engaged with over the past few months were now focused on supporting their communities through the crisis.

People are furloughed and so volunteer at food banks, people lose their jobs, they lose loved ones to the virus, the grassroots level is not interested in me trying to encourage them online to talk about inequalities that PRE-EXISTED the virus and are now being made even worse. The public network gets locked down and we pause activity thinking it won’t be long before we’re back chatting over coffee.

A year later and we’re still not able to get together in person and our coffees are stone cold! However, during this time of crisis I focused on maintaining the network rather than trying to grow it. I kept in contact with our members via the mailing list and shared opportunities for engagement and to participate in, and develop, research. It didn’t seem right to actively pursue growth during a pandemic but, as our members represent wider groups within their communities, they have shared these opportunities and this has resulted in more members of the public signing up. We now have 57 official members from across the country who have been supporting and influencing the work we do. Amazingly during a pandemic, our public partners have supported the development of several health inequalities projects, contributed to covid-related inequalities research and influenced decisions over national priority funding around inequalities and prevention from the NIHR Applied Research Collaboration (ARC).

Key messages for ensuring diversity in research 

Identify trusted partners


Engage with your existing networks but identify people who are already trusted in their community. These people are probably the most important, whether we’re in a Covid or non-Covid world. Find them and work with them. Approach grassroots organisations, church leaders, sports groups, charities, hang out in coffee shops, community centres, pubs (when permitted!).

Actively seek out diverse groups

Don’t assume members of diverse groups will respond to your advert on Twitter, you must actively engage with groups and organisations that represent marginalised communities. If you’re unsure use tools like PROGRESS+ and HIAT as a guide to check you’re providing equity of access for members of diverse communities (these consider ethnicity, LGBT+, rural/urban, age, disability, economic disadvantage etc.).

Boots on the ground

Leave the comfort of your (home) office! Opportunity does not knock at your door, you need to go out and seek it. Pre-Covid this means being present in community spaces, libraries, coffee shops, markets and schools. During Covid this means using existing networks, online sessions, and setting up WhatsApp groups.

Give something back

Always give something back, that may be reimbursing people for their time or providing opportunities for training and skills sharing – and here I don’t just mean assuming we have skills that they want, perhaps members of the community want to share their skills with us. Develop reciprocal relationships, don’t just take from communities to boost your career!

Be patient

Developing trusted, meaningful, and reciprocal relationships takes time. Be patient. Do not underestimate how long it can take – I’ve been working with some groups for 6 years!

Manage expectations

But if you don’t have 6 years, be honest with people that your work is time sensitive and clearly articulate what you need and how people will be reimbursed if they’re able to help you. Don’t promise the moon on a stick if you can’t deliver!

Finally, blogs are also a great way to connect with diverse groups so don’t forget to add some shameless promotion: if you’re a member of the public reading this and would be interested in joining our network you can sign up here.

For more information about the development of the network, and other experiences of improving diversity in research, you can view a recording below of a recent joint NIHR School for Public Health Research / School for Primary Care Research webinar.

Friday, 29 January 2021

Bringing the voice of lived experience and community learning into research

Posted by Angela Broadbridge, Peer Research Lead, The Young Foundation (former Research and Evaluation Lead, Fulfilling Lives Newcastle Gateshead)

“There’s something really interesting in our data here, we don’t quite have the full picture, let’s talk to some people to puzzle it over more.”
This is something I hear myself or the team at Fulfilling Lives Newcastle Gateshead (FLNG) say really regularly. We’re an 8 year National Lottery Community Fund learning programme working to improve the lives of people facing multiple disadvantage and build a trauma-informed approach within the services that supports them. We have a wealth of data from supporting over 250 people locally, and we work with a team of Experts by Experience, people with lived experience working to bring about change across the systems they have been through, using their voices to be heard across different platforms.
Fulfilling Lives Newcastle Gateshead Experts by Experience Network co-design session

As the programme has developed our relationship with Fuse has changed and connections have grown, we now do much of our ‘puzzling over’ with Fuse colleagues! I joined Fuse as an associate member back in 2017 when I took up my post as research and evaluation lead for FLNG. I attended Fuse Quarterly Research Meetings to build up my contact base and learn from others operating in this interesting space between frontline practice and research and learning. As I began to see frontline practitioners come into those sessions, I invited some of our own frontline staff to join me to share their experience of working with people who have experienced complicated and challenging circumstances and struggled navigating systems.

I want to highlight some of our learning from building collaborative relationships through and with Fuse researchers, as this has proved to offer new platforms for the voice of lived experience not just to be heard in research, but to set research agendas and co-produce work alongside academics.

In 2018, Dr Sheena Ramsey (co-lead of the Fuse Healthy Ageing Research Programme) invited me to attend a Research Hub Initiative event with Public Health England and I pitched a seed grant funding idea with support from Fuse researchers. Our recently published work on deaths in the multiple complex needs community, an issue our Experts by Experience network encouraged us to explore, was borne out of this funding. We have since joined up with Sheena again in a new study identifying effective and sustainable interventions to improve the oral health of adults with severe and multiple disadvantage. This collaboration works because Sheena and other researchers associated with the study took the time to really get to know our programme, and our Experts by Experience network. Sheena visited us at the men’s accommodation project where we were based a few years ago, met some of our frontline staff and also built trusting relationships with the network, introducing us to academic and practice colleagues to further situate our programme learning within Fuse.

Brainstorm - what makes a good collaboration?
While this was happening, Prof Susan Carr (Fuse Associate Director), set up a meeting with her team at Northumbria University and FLNG peer researchers to talk about projects we were both working on and to explore collaborations. She also arranged for our peer researchers to present early findings from their work to Prof Kevin Fenton, Public Health Regional Director for London, and it was at this point that we started to see how people with lived experience could be involved in local research and practice beyond being participants. There were opportunities for genuine collaboration and learning together.

Fast forward to early in the pandemic and we were involved in two applications to the NIHR Applied Research Collaboration (ARC) for the North East and North Cumbria. One of these applications was exploring food insecurity with Fuse Associate Dr Steph Scott, and Kevin Dobson and Keith Gibson from FLNG’s research team set about exploring our own programme data around foodbank use. Our Lottery funded programme is quite unique in that we have a personal budget fund to use to support people on the programme with anything from their basic needs, including food and accommodation, to more creative uses like buying art materials or enjoying an afternoon at the cinema. Once again we had a ‘there’s something interesting here’ moment.

I sent Steph an email saying:
“we’ve worked with 259 people in Newcastle Gateshead over 6 years and of these 127 individual client records contained a reference to food insecurity or food poverty. We had 14 unique cases, interestingly all female, whose notes had 10 or more references to food poverty and we can see from the notes frequent references to benefits being suspended, people not eating, or missing the foodbank opening times.”
Working with partners to surface system barriers and solutions
The conversation that followed led to us talking to the Experts by Experience about food insecurity, they were similarly enthused by the topic and together we made a successful joint application to the Catherine Cookson Foundation within Newcastle University for a project exploring mutual aid during Covid-19. Using our Lottery funded programme learning and building on our experience co-producing research in other projects with Fuse researchers we are working with a group of Experts by Experience who have developed research questions to start a listening exercise with their peers around their experiences of food insecurity, mutual aid and Covid-19.

This relationship with Fuse is evolving and changing, and it now feels like a relationship truly rooted in the principles of co-production. Our team report that they feel their frontline experience is listened to and helps shape research projects, and our peer researchers are involved in numerous projects and have the confidence to approach Fuse researchers to develop new pieces of work building on the issues that are important to them and their communities. As our programme comes to an end in March 2022, the Experts by Experience network is now thinking about its legacy, we very much hope to continue to build on this strong foundation for collaboration and learning.