Friday 17 May 2024

Animating practitioners to take action on stigma

Matty Starforth, Public Health Practitioner-Harm Reduction and Social Inclusion Portfolio, Newcastle City Council

“Stigma, stated simply, is a set of negative and often unfair beliefs. Stigma can be experienced on a societal, structural and personal level. It is employed largely unconsciously but at times also consciously”. 
Anti Stigma Network


Stigma is often a word that is associated with harm but it is important to recognise that stigma can have a huge impact on individuals and groups in society. From my own professional experiences, I am aware, like many of my colleagues and partner services are, that the harms of stigma can include and are associated with inequality, disadvantage, discrimination. Stigma increases stress, shame, depression, isolation, and can lead to the avoidance of healthcare and decreases treatment engagement and retention for individuals and groups.

 

It’s clear that there is a need to address stigma and embed an ‘anti stigma approach’ as part of the work we do to tackle inequalities, but doing so can be challenging. While people tend to be generally aware of the term stigma and how this can affect individuals, there is often less understanding of the depths that people go through to avoid and overcome the stigma they experience, such as not attending appointments or seeking the help or support they deserve. There is also less awareness of the steps that we can all take as individuals to not only avoid stigmatising people through our language and practices, but also actively speak out and promote an anti-stigma approach more widely.

What we are doing about it

To address this, we have had several areas of work in Newcastle upon Tyne looking to raise awareness and address some of the harms of stigma on others. This started with the publication of Drugs, Identity and Stigma and ongoing discussions about changing how we focus on people who use drugs or alcohol and the language we use for those facing multiple disadvantage and exploitation. Academics, policy makers, public health and key stakeholders, from working together on various research, came together to deliver a practitioner conference, improve practitioner training, development and networking and production of a practice briefing, stigma animation and a planned education package. All of this has been informed by lived experience.

In May 2023 we worked with partners to hold a conference to over 320 practitioners, service providers and community members from across the region. The Stigma, Trauma, Substance Use and Domestic Violence Conference involved a range of international, national and regional researchers and academics including a keynote talk from international anti-stigma lead, Professor Carla Treloar. The Conference was designed to promote knowledge exchange and good practice of Anti-Stigma work from across the region. A practice briefing that was developed from the event can be found here. A key theme in the discussions has been around vulnerability and exploitation, and partners have worked together, from research developed by the University, to produce animations around exploitation and home takeover. Research into practice improvement. Two artists were employed to capture the key themes and discussions of the conference as a visual (see below) which could then be shared with services.

Visual capturing the key themes and discussions of the conference

Developing the stigma animation

From this work, we explored how we can explain the ongoing theme of stigma and its impact. A recent project that I have coordinated, in collaboration with university colleagues, is the production of a stigma animation which you can see above. Aimed at practitioners and volunteers, this will help raise awareness and become a key resource to support the work and objectives we have within Newcastle Public health, and also the wider local authority. The animation has involved consultation and input from a range practitioners, service users and individuals with lived experience of stigma. At each stage of the animation production, I have attended the Newcastle Service User and Carer forum. Inclusion of those with lived experience of stigma was essential in these discussions and has been key in helping to shape the direction and design of the animation, particularly in relation to service needs and solutions.

A key challenge during this work has been ensuring we produce an animation which doesn’t unintentionally stereotype or stigmatise individuals through the imagery used. There has been a lot of thought-provoking conversations and discussions which have led to both personal and professional reflections. For example, figures in early storyboard drafts of the animation which were uniformly male and able bodied were subsequently changed to be more inclusive and represent a diverse range of bodies. Throughout the process there have also been a lot of discussion in relation to the language that we use to support the imagery. Some key insight was gained from the Newcastle Service User and Carer forum where participants identified examples of where they had felt stigmatised through language and how potential changes could have changed outcomes. These examples have been included within the animation to highlight the impact of language.

We plan to share the animation across a range of practitioners working within fields such as drug and alcohol, mental health and wider health and social care roles. This will support the drive to encourage sign up to the Anti-stigma network and prompt organisations to develop an anti-stigma strategy for their workplace. Alongside this we wish to support practice improvement by developing a stigma education package, which the academics are leading on, and which we hope to eventually deliver through an educators by experience model.

Addressing stigma will require individual and collective action from all of us, and so we urge you to please watch and share the animation, use the resources available, sign up to the Anti-Stigma Network and help us to spread an anti-stigma approach.

Background and context

Addressing stigma is a key priority in Newcastle upon Tyne. In 2022 the Director of Public Health report stipulated that policy and practice should ensure health improvement is free from stigma. This issue is also gaining National traction, with the Office for Health Improvement and Disparities (OHID) recently announcing the project ADDER stigma indicator programme and currently adapting Professor Carla Treloar’s (University of New South Wales) Australian stigma indicator and monitoring model for the UK. The NHS Alliance Stigma Kills campaign has recently been rolled out, with the North East and North Cumbria Integrated Care System (ICS) backing this campaign for our region. The Anti Stigma Network has also recently formed to raise the profile and awareness of stigma, especially the impact on people who use or have issues with drugs and/alcohol.

Friday 3 May 2024

How volunteering at 'biscuit club' helped me build bridges between parents and researchers

Posted by Ella Anderson, Fuse Public Involvement and Engagement Manager, Newcastle University

 

“volunteering feels like the morally right thing to do – we can’t just ‘take’ from groups and not offer something in return”

 

MumSpace volunteers together
Supported by the Newcastle University’s staff volunteering scheme and Fuse colleagues, I had the opportunity to volunteer with MumSpace. As Fuse’s Public Engagement and Involvement Manager, this meant that I could spend some time away from my desk learning more about the voluntary sector within a grass roots organisation, build sustainable community relationships, collaborate with volunteers who have valuable connections to local communities and, above all, help out in a way that was specific and useful to the needs of the community group.

What is MumSpace?

MumSpace is a warm, welcoming and inclusive community group for parents, carers and their little ones. Here, the focus is on building supportive networks and providing children with a safe space to play. MumSpace is part of Parents and Communities Together (PACT), set up by Citizens UK. PACT was first set up in London as a community-led social support project and has since been successfully piloted in North Tyneside too. The project aims to empower parents and improve the health and development of young children.

The community group meets twice a week in North Tyneside during term-time. There is no cost to attend, although it’s possible to leave a small optional donation that goes towards drinks and snacks.

Toy time at MumSpace
Why did I choose to volunteer with MumSpace?

There are both personal and professional reasons why MumSpace was an obvious choice as a place for me to volunteer. On a personal level, I was lucky enough to attend MumSpace myself with my two children, in particular with my little boy. I always found this to be a welcoming space, no matter how I was feeling or what kind of day I was having. It was a place where you could chat with other parents and carers or just have a quiet cuppa whilst your little one whizzed about and played. I have made some brilliant friends at this group and I witnessed first-hand the value groups like this have on people’s wellbeing. It felt like the natural thing to do to give something back.

When I joined Fuse in 2021, I was already a regular at MumSpace with my son. Every week, there would be new faces and new people to speak with. It was evident that everyone’s experiences and backgrounds were unique - the one constant was that we were all caring for a little person. Each parent or carer has their own story, and it shows beautifully how one person alone cannot represent all thoughts, feelings and experiences of an entire parenting community. It was this diversity of experience that I could see would be a valuable addition to the Fuse Public Partner Network, as we seek to celebrate and share a wide range of voices and experiences in public health research.

In some ways, it felt like a natural next step to see if the group organiser, Wendy McConnell, might like to talk about involvement in public health research. Nevertheless, I admit that I felt a little nervous speaking with Wendy about a possible collaboration with Fuse, not least because I didn’t want to change the general feel of this space that felt miles away from my ‘work life’. But I needn’t have worried. Wendy and I chatted easily about our respective roles, about Fuse more generally, and about how there might be opportunities for working together. It felt a bit strange to be talking about work whilst at the same time chasing after my 4 year-old and trying to encourage him to play with the toys rather than steadily work his way through all of the biscuits on offer. After all, this was the group he fondly called “biscuit club”...

Looking back, I suspect that it was this informal and gentle approach - building on an existing foundation of trust and knowing one another - that in turn has made the relationship between Fuse and PACT more meaningful and fruitful.

MumSpace disco
How has MumSpace been involved with Fuse?

Wendy, PACT and the MumSpace parents and carers have played a significant role across a number of public health research projects. Wendy, for example, originally joined as a Fuse Public Partner in a personal capacity. But her role as a Parent and Community Organiser also lends itself well to building bridges between members of community groups and researchers. For example, parents and carers from MumSpace are collaborating on a project around poverty-proofing maternity services, have contributed to research around barriers to returning to work and childcare costs, and a researcher will be visiting the group in May 2024 to discuss a new project relating to food insecurity during pregnancy. Wendy has also spoken at a Fuse Public Involvement and Engagement Group meeting to share what it was like to belong to a community group involved in health research and to reflect on the associated benefits.

Mam’s time
What have the benefits of involvement in research been for the group?

Wendy explained that benefits of involvement have included the feeling of empowerment for parents and carers, feeling ‘heard’ and making positive changes, for example to services. There have also been benefits from collaboration with researchers, for instance, the development of a formal evaluation of MumSpace. This evaluation played a key role in securing new funding* to continue running the group. This demonstrates that research relationships can be positive for all involved. It also shows how reward and recognition for involvement can extend beyond remuneration – there can be other ways for university-based researchers to usefully and meaningfully ‘give back’. Volunteering can fall into this category too.
Arts and crafts

Has volunteering been useful for building relationships within community groups?

There have been notable benefits to Fuse and wider health research as a result of the volunteering and community engagement activities with MumSpace. It has helped to build trust; shows a commitment to truly listening to people and their stories; acts as a gentle stepping-stone towards the inclusion of diverse voices and perspectives within the Fuse Public Partner Network; and offers a greater sense of transparency about what involvement in health research is and what it can look like. It aligns with many of the core principles of the NIHR Community Engagement Toolkit. Newcastle University have also added PACT as an organisation who university staff and students can volunteer with in the future, so even after I have left there will be opportunities for continuity. In short, volunteering feels like the morally right thing to do – we can’t just ‘take’ from groups and not offer something in return.

What has it been like to volunteer?

Volunteering has been an incredibly positive and rewarding experience. To be on the ‘other side’ of the group and helping to set up, offering people what would often be their first teas and coffees of the day, and welcoming new people to the group and then seeing them return the following week has been brilliant. I can still only remember a maximum of two drink orders at a time (!!) but I hope people have felt as welcome and included as I did when I first joined.

Want to find out more? Get in touch!

For more information, please email Ella Anderson, Fuse Public Involvement and Engagement Manager on eleanor.anderson@ncl.ac.uk.

For more information about MumSpace, PACT and Citizens UK in particular, email Parent and Community Organiser Wendy McConnell: wendy.mcconnell@citizensuk.org

New faces are always welcome at the group:

Tuesdays – 12.30pm to 2pm at St. Luke’s Church, 10 Frank Street, Wallsend NE28 6RN
Thursdays – 9.15am to 11.15am at St. Cuthbert’s Church, Albion Road West, North Shields NE29 0JB


*From March 2020 to August 2023, MumSpace was funded by Comic Relief and, following a successful funding bid, it is now funded by Public Health North Tyneside.

Friday 22 March 2024

"We need happy memories"

How people who have experienced homelessness are redesigning support

Professor Monique Lhussier & Dr Christina Cooper from Northumbria University, and an Experts by Experience panel

Fuse researchers at Northumbria University were recently awarded £1.4m for a project looking to understand connections between trauma, health and homelessness in the North East. Here the research leads share how they have previously worked to embed community voices to improve health and reduce disparities for people with experience of homelessness.

The link between trauma and homelessness has been well documented, with recent evidence showing that 94% of people experiencing homelessness have experienced trauma. In the majority of cases the trauma was complex and reoccurring, with 65% having experienced four or more traumatic experiences.



In 2023 we received funding from the Arts and Humanities Research Council to develop a network to better support people who had experienced homelessness. We were fortunate to work with eight Experts by Experience (EbEs), or Experts by ‘Disaster’ as Barnie (one of our EbEs) suggested; people who had experienced homelessness, and the complex multiple needs and exclusions that frequently co-occur. The nine months project aimed to develop integrated ways of working, embedding community voices into the system to improve health and reduce disparities for People with Experience of Homelessness (PEH).

Discussions, which were led by EbE throughout the project, reiterated that trauma was common and often started in childhood, and followed by further re-traumatising events. Karl commented that while he remembered in vivid detail what had happened to him as a child, he often could not recall what he had been doing last week, highlighting the lasting impacts of trauma. Further discussions highlighted negative impacts throughout life, from relationships, education, employment to mental illness, suicide and addiction.

We reflected as a group that PEH are often viewed through a lens that considers only their immediate needs; shelter, clothing, food, and healthcare. Drawing on Maslow’s hierarchy of needs we considered that only the bottom two tiers are the most consistently met, but belonging and esteem much less so. The Experts by Experience felt that people need to be given a chance to grow in more holistic ways across all tiers of the hierarchy in order to become healthier and happier.

Tonkin’s model of grief proposes a way to see a happy and meaningful future focusing on growth around the grief. From these discussions, we collaboratively designed the graph below, which superimposes Maslow’s hierarchy of needs with and adapted version of Tonkin’s, in a model to inform ongoing and future work.

We have begun to explore this model through three core project strands:
  1. an innovation fund for which EbE were responsible;
  2. participation in an accredited Northumbria University module, and
  3. through understanding the impacts of involvement with the project.
The innovation fund pilot involved the development and implementation of five creative projects providing sustainable and varied opportunities for self-care, learning, and physical activity for People with Experience of Homelessness. One of those, the Hope Project, gave opportunities for 189 PEH to take part in new creative, social, or physical activities. Steven designed the Hope Project on the premise that ‘people need happy memories’, which those who have experienced trauma do not always have, to draw on when the going gets tough. Barnie explained that often people lose the motivation and ability to cook for themselves when they have lived on the streets. He designed cookery classes with a train the trainer model, meaning that many people have since benefitted from eating healthier food that they had cooked themselves. Lee set up a bike repair workshop so people can take part in physical activity and be more self-sufficient.


Being given the opportunity to manage a budget, help others and having the status of university student (“I have been called many things; it was nice being called a student!”), stood out as having had a positive impact for many of the Experts by Experience. Lee and Porl said that opportunities to shape the project and develop their skills as researchers led to them feeling trusted and valued as equal members of the project team. Further to this, involvement in the project gave a sense of purpose and belonging, and increased confidence for many EbE.

This supported the notion that it is possible to grow around trauma when we attend to people’s experiences, hopes, talents, potentials and ambitions, as well as their basic needs. It also challenged us, as researchers, to think of research not solely as a detached enterprise, but as an inherent part of a system that can support people to grow and have more positive and valuing experiences.

*This blog has been written in memory of Ben


References:
Image:
  1. Photo by Matt Collamer on Unsplash