Strengthening partnerships to improve primary care in the Deep End

Posted by Dr Angela Wearn, Associate Member of Fuse and Advocacy and Engagement Lead for the Deep End Network North East and North Cumbria

In this blog, Angela reflects on what people living in some of the region’s most disadvantaged communities have told the Deep End Network about challenges they face when it comes to accessing primary care, including attending appointments, and what we can do to improve this.

The Deep End Network is a growing GP-led international movement that began in Glasgow in 2009 as a response to the ‘inverse care law’, which is that those who need care the most often struggle the most to access it.

The North East and North Cumbria Deep End Network was established in 2020, with support from Fuse, the Centre for Translational Research in Public Health, and the NIHR Applied Research Collaboration North East and North Cumbria, creating a space for practitioners working in areas of severe socioeconomic disadvantage to share experience, shape solutions, and influence how primary care can better meet the needs of the people it serves.

Funded by the North East and North Cumbria Integrated Care Board, the Deep End Network focuses on four core priorities:

• Workforce: Building and retaining a well‑supported workforce in high‑need communities.
• Education: Strengthening training at all levels so current and future health professionals understand health inequalities and access to opportunities
• Advocacy: Ensuring Deep End practices and communities shape local and regional decisions on funding, access and service design.
• Research: Evaluating Deep End initiatives to understand what works, why it works, and how effective approaches can be scaled to improve outcomes.

Since 2023, I’ve been working as Advocacy and Engagement Lead to build and strengthen partnerships between Deep End communities, practitioners and researchers, ensuring the experiences and perspectives of underserved patients and communities inform both our research portfolio and the wider support and initiatives we offer practices.

Over this time, additional funding and support from across NIHR infrastructure, including the NIHR Applied Research Collaboration North East and North Cumbria, NIHR Three Schools and NIHR Research Delivery Network, has further supported targeted involvement and engagement work with those living in Deep End neighbourhoods, the majority of whom have had no previous experience of involvement in research or service development.

Support through the NIHR Three Schools collaboration was made possible through membership of Fuse, which is part of the NIHR School for Public Health Research, one of the three NIHR schools within the collaboration.

What we’re hearing from Deep End communities

Many Deep End patients face multiple, overlapping challenges including low income, insecure housing, poor mental or physical health, caring responsibilities, trauma, or homelessness. These pressures make it harder to engage with primary care, even when people want to.

Through conversations, workshops, and community-led sessions, people have shared why engagement can feel difficult:

• Personal pressures: the emotional and practical effort of attending can feel overwhelming and ‘too much’ on the day of the appointment.
• Feeling unheard or stigmatised: which makes reaching out feel pointless.
• Time and capacity: life can be busy, chaotic, and demanding, with health often taking a backseat.
• Overwhelming contact routes: getting through to the practice or accessing a suitable appointment can feel impossible.
• Negative past experiences: GP practices don’t always feel welcoming or safe.

Overall, I regularly hear that disengagement is rarely about disinterest, it’s about the collective barriers that build up and make staying connected to care difficult.

What communities say needs to change

Improving patient engagement in Deep End areas is complex. There is no single fix, and practices are working under significant resource constraints. But through our involvement work, communities have highlighted three priorities for investment and change that they feel would make a meaningful difference:

• Improve connection and communication
• Strengthen co‑design approaches
• Build sustainable, community‑based partnerships

These priorities align strongly with national ambitions around personalised care, prevention, and reducing inequalities, and they reflect what people say would help them feel more able to engage with primary care as the wider system shifts towards more integrated neighbourhood-level working.

Moving forward together

The NHS encourages practices to work closely with Patient Participation Groups (PPGs), but Deep End practices face additional challenges: limited resources, diverse patient needs, and complex barriers to involvement. From the community perspective, awareness of PPGs is low, confidence is often limited, and many people are unsure whether their voice will genuinely matter. To support better partnership working, the Deep End Public Advisory Group identified three simple involvement principles that are easy to remember and act upon, and clear enough to come back to when things get busy or complex:

• Make it easy
• Make it worthwhile
• Value patient experience

These principles are practical, community-informed and can be applied across a range of contexts to guide diverse involvement.

New one‑page resources for practices

To help bring these messages to life, we’ve co‑developed two infographics with Deep End patients, communities, and Nifty Fox. They distil community insights into quick, usable one-page resources that GP practices and other decision-makers can draw on to strengthen engagement and build more inclusive partnerships.

Supporting Patient Engagement in the Deep End: insights from the community
Working Better Together in the Deep End: patients and GP practices as partners

These resources will sit alongside a wider collection of materials, including a public‑facing animation and an illustrated impact report, which will be shared over the coming months. A celebration event is planned for early next year.

Why this matters

The Deep End Network exists because tackling health inequalities requires more than goodwill, it requires meaningful partnerships and system‑level commitment. These new resources are an important step in supporting practices and others to work alongside communities in ways that feel respectful, realistic, and rooted in the experiences of people who face the greatest barriers to accessing and influencing the care they receive.

We hope they support teams across the North East and North Cumbria and beyond to strengthen relationships, reduce barriers, and create primary care environments that are more responsive to the needs of communities most affected by health inequalities.

If you would like to know more about partnership working, co-production or our involvement work in the Deep End please contact Dr Angela Wearn (angela.wearn@newcastle.ac.uk)

Find out more about the Deep End Network

About the author

Dr Angela Wearn is Advocacy and Engagement Lead for the Deep End Network North East and North Cumbria and a Research Fellow with the NIHR Applied Research Collaboration North East and North Cumbria. She is also an Associate Member of Fuse, the Centre for Translational Research in Public Health.

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.

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.