Training tomorrow’s Public Health leaders: impact, innovation and prevention

Posted by Liz Morgan, Head of School for Public Health North East, NHS England

The North East Public Health Postgraduate Specialty Training Programme holds an event annually to showcase the work that has been done by trainees over the previous year. This annual showcase highlights how public health trainees in the North East are delivering practical, high‑impact work across the health and care system, demonstrating the value of prevention-led leadership at a time of increasing system pressure. It not only celebrates the tremendous work our trainees have been doing but also provides an opportunity to share that work with public health colleagues in multiple settings During this time, our trainees will have been immersed in communities, health and health-related systems and research environments, identifying challenges, designing solutions and implementing projects that demonstrate innovation and impact. The projects presented at our last meeting ranged from heath protection and health improvement to policy development and healthcare public health. Each one reflected the commitment, curiosity and compassion that defines our public health workforce.

Tackling air pollution through NHS leadership

Most NHS Trusts in the North East employ at least one public health consultant, valuing the broad benefits that this can bring, but also providing greater capacity for public health training. Dr Laura Keast had been undertaking a placement in Northumbria NHS Trust, implementing the Clean Air Hospital Framework and demonstrated the value of collaboration between public health and sustainability teams. Air pollution remains the single greatest environmental threat to public health in the UK, contributing to an estimated 30,000 deaths annually and worsening health inequalities. By making air pollution a tangible and locally relevant issue through accessible monitoring of nitrogen dioxide levels and clear health messaging, the initiative has generated engagement and momentum for action. Importantly, the project highlighted that public health leadership, data expertise, powerful health messaging and alignment with national policy levers are critical in overcoming uncertainty and organisational resistance to change.

Reducing missed outpatient appointments for children

Dr Mark Riley presented a service evaluation undertaken at South Tees NHS Trust exploring why children are not brought to outpatient appointments, an issue with significant implications for health outcomes and system efficiency. Using surveys and follow-up telephone calls, the evaluation identified five key themes:

• appointment timing
• forgotten appointments and reminders
• administrative barriers
• health literacy
• cost of attendance.

Forgotten appointments were the most common reason for non-attendance, with parents strongly favouring clearer and more frequent text reminders. Difficulties rearranging appointments, confusing letters and limited awareness of travel cost reimbursement schemes further contributed to missed care. The findings underscore how relatively small, system-level changes, such as health-literate communications in multiple languages and flexible appointment scheduling to include evenings, can reduce inequalities and improve service use. Finding a champion in the organisation to enable change was also critical.

How leaders make difficult priority-setting decisions

As pressures on the NHS intensify, difficult decisions about how to allocate limited resources are unavoidable. Dr Tom Seasman explored how senior health leaders justified priority-setting decisions. Qualitative in‑depth interviews with leaders across the English health system show broad support for prevention and reducing health inequalities. However, when faced with real-world trade-offs, decisions often favour short-term frontline clinical care over long-term preventative investment and leaders differ in their responses. Clinical leaders often prioritise immediate need and the “rule of rescue”, while those approaching the same problem from a public health perspective place greater emphasis on maximising population health gains through prevention. Political constraints, emotional proximity to patients and fragmented funding structures frequently limit leaders’ ability to shift resources from acute care to prevention, despite widespread recognition that long-term sustainability depends on doing so. These findings raise important questions about how the health system can better support leaders to make transparent and ethical trade-offs.

Policing and public health: prevention in action

Prevention also featured strongly in work exploring collaboration between policing and public health. This is important because of shared commitments to improve lives, reduce harm, reduce unnecessary demand on services, reduce vulnerability, improve equity and maintain public trust. Since the publication of a national consensus statement in 2018, prevention has become more explicitly embedded within policing policy and inspection frameworks. A 2025 review concluded that, while the original vision remained relevant, a refreshed consensus was needed to reflect current challenges and language. Kylie Murrell led on this national project, chairing the policing and public health collaborative, leading on the re-drafting of the document and sign off and associated ministerial briefing. The work highlights both the appetite within policing to engage more fully in prevention and the ongoing need for public health professionals to support cross-sector partners to identify upstream opportunities to reduce harm, vulnerability and demand. It's also an excellent example of how our trainees have led on national initiatives.

Supporting wellbeing within the public health workforce

Alongside the ongoing system-level challenges, attention to the wellbeing of the public health workforce itself is increasingly recognised as essential. Vineeta O’Key reflected on the work the trainees had been doing to support their own wellbeing and on how a Wellbeing Away Day could demonstrate how evidence-based wellbeing approaches could be embedded within training and professional development. Grounded in the “Five Ways to Wellbeing”, the day prioritised connection, learning, physical activity and engagement with nature through volunteering with Durham Wildlife Trust. Feedback highlighted the value of protected time for relationship-building, reflection and compassionate leadership, reinforcing the role of wellbeing as both a personal and professional competency in public health practice.

Julie Lowe presented her experience of travelling to Canada and the Netherlands on a Churchill Foundation fellowship. The Foundation funds approximately 100 Fellows each year to travel overseas to explore an issue of societal importance. This project focused on community interventions to improve the health and wellbeing of unpaid caregivers, who, as a population, experience poorer mental and physical health outcomes known informally as the ‘carer burden’. She shared reflections from her own experience as a young carer and motivation for choosing a career in public health. Findings from her experience included the importance of listening to diverse groups of carers to understand their needs and preferences, and the need for interventions that reduce carer burden rather than responding to health needs as they arise.

Taken together, these projects reflect a common theme: public health impact is maximised through leadership, collaboration and a commitment to prevention, even in constrained systems. Our trainees are already having an impact in their placements and communities by shaping national priorities, supporting workforce wellbeing and building partnerships beyond health. Creating spaces like this conference where recent projects and ideas can be shared, and challenges are explored are vital and demonstrates how public health continues to be pivotal in navigating complexity and working towards more equitable and sustainable futures. I would strongly encourage all of our public educators and senior public health colleagues to attend this event. As Public Health influencers, the task of considering, adapting and altering these ideas and interventions for the benefit of the populations we serve rests with us.

“It’s not something that you just openly discuss” - Supporting British South Asian carers affected by drug and alcohol use

Posted by Jayne Black, Public Health Officer, Harm Reduction and Social Inclusion, Public Health Directorate, Newcastle City Council

Access to services, such as those related to drugs and alcohol and other health services, can be challenging. This challenge may be harder for some minority communities due to a variety of additional factors which impact people from accessing support when required. It is important that we identify these issues and barriers that prevent people in need from accessing help.

PROPS Community Connector, Fatema Rahman (C) with colleagues Annette
  Walby (L) and Helen Thompson (R), celebrating Eid at Fenham Library

In Newcastle, an ethnic minority needs assessment has been carried out and is available on our Joint Strategic Needs Assessment webpage.

We have also partnered with Northumbria University to explore barriers and perceptions to accessing drug and alcohol support.

An important area of focus is how family members are affected by a loved one’s substance use. In Newcastle, a recent research project backed by Fuse seedcorn funding investigated the perspective of British South Asian carers, who care for people who use drugs and/or alcohol, regarding their experiences and access to specialist drug and alcohol carer services in Newcastle.

The collaboration which included, co-production with people with lived experience, was between Newcastle City Council, PROPS (Specialist Family Drugs and Alcohol Service), Northumbria and Newcastle Universities.

What do we know are some of the barriers?

Attitudinal (personal)

The limited research suggests that attitudinal barriers within minority groups exist in relation to accessing care services. These are suggested to be in relation to not wanting to involve services. This is due to low awareness of services and availability, and concerns around cultural or religious appropriateness.

Stigma

Stigma is harmful and has been defined as the devaluing of an individual based on their characteristics or behaviour.

We know that stigma in general can have an impact on whether an individual seeks support for alcohol or drug issues, or other health issues.

Within the British South Asian and Muslim community, it has been identified that societal stigma, within the community, can impact upon people’s willingness to access help. This stigma may be centred around concerns of what other members of the community perceive about a particular individual or family and their use of alcohol or drugs.

Carers

The research evidence within this area rarely extends to those who are in a caring role for family or friends who are struggling with issues around alcohol or drugs. This could be an important area of focus, as support from a family member or friend is incredibly important. Whether day-to-day or during recovery, supporting carers is vital. However, it is worth noting that some people may not identify or recognise themselves as a carer and therefore, are unaware of support.

The Census of England and Wales in 2021 identified that North East England has the highest number of people providing unpaid care. It also suggests that unpaid carers in the North East provide the most hours of care.

Providing care may impact the health and wellbeing of a carer, this could include financial as well as if someone is a kinship carer. Therefore, it is important to identify if there are barriers to accessing carer support services for people who care for family members or friends using drugs and or alcohol.

What did we discover?

Our research results identified a variety of key areas. These areas related to the topic of drugs and alcohol in terms of it being ‘taboo’, with associated stigma, the barriers that are experienced for accessing family support, along with the general awareness of family support services.

Drug and alcohol use as a taboo topic

Carers highlighted the difficulty of discussing their loved one’s use of drugs and alcohol with other people who are close to them. The topic itself can be seen as something which creates unease. This creates a possible negative effect as talking with others may help create a supportive network and help carers feel supported and provided with guidance.

“the drug use; it’s not something that you just openly discuss. It’s like [frowned] upon. You know, people, I think, blame the parents, “well why aren’t you doing something?” […] Unless somebody can help you, you know, guide you, there’s no point having these discussions with people […] I mean, I’ve spoke to their grandma about it and stuff. Like, people who genuinely care.” 

                                                                             Participant

In contrast, others mentioned conversations about drugs and alcohol being more prevalent in the community, requiring more awareness for community members.

Barriers to accessing family support

The issue of stigma is evident from the discussion, with drug and or alcohol use being seen as an individual issue of choice, which not only impacts the individual, but affects the reputation of the family. It is seen as different to mental health issues, as something that people are unable to physically observe or have an understanding of.

“I don’t even talk about his mental health condition, ‘cos it’s a stigma. People like, laugh at it and things and say, ‘look, he’s barking; he’s crazy’. It’s this whole attitude that he’s crazy. You know, there’s no sympathy. […] it’s better and easier to get cancer than it is to [have anything] like that, because no one’s going to be understanding. […] People don’t understand, they think they’re putting it on half the time. They’re not understanding the side effects that it has.” 

                                                                            Participant 

There is recognition that seeing or being aware of someone in a community accessing help for drugs and alcohol, or in recovery, can help shift perceptions and show that support is accessible to other members of the community.

Misconceptions around confidentiality and issues of trust can be seen within those working with services or accessing a service. Carers need to be reassured that services are bound by confidentiality. In terms of confidentiality within the community, raising awareness about available support can play a major role in reducing stigma associated with engagement and seeking support.

There is hope in the organisations that provide family support services, and allowing a carer to progress on their support journey at their own pace is important.

“I got involved with them and *the family support service* were really good, because at that time, I didn’t want anyone to know, ‘cos I didn’t know what was happening and they offered me so many different solutions and like, I don’t have to see them straight away […] Cos some people don’t want to talk about… You know what I mean? So at that time, I didn’t want to see who I am in this. I just wanted to understand what’s happening.” 

                                                                             Participant

Awareness of family support services

It was identified that there is limited knowledge of services that provide support for drug and alcohol recovery. This may create difficulty, as the role of the carer can be a ‘navigator’. Therefore, limited knowledge may add an additional pressure to the carer, which was an issue raised during the interviews.

Services reaching into communities, rather than people who require support finding their own their way, is highlighted as being a positive - which can be used to make recommendations for a future response.

Using an approach which makes the most of existing support already within communities and working at a pace that suits the carer. Also, harnessing the power and visible importance of communities can create a support network, ensuring assistance is sustainable and effective.

“Over the phone, it was fine. Then eventually, they came to my house. Eventually met in cafes, then started a course with them.”

“[They] are very good with giving me a variety of choices that suited me when I needed, so whatever suits you, with patients and carers, however it suits them. However it suits every individual is different, so they met my needs.”     

                                                                             Participant

Recommendations

We must connect with those who have relationships with members of a community to enhance trust and help support people who need it. Recommendations from the research included outreach into the community for connections with leaders. This must include vital considerations around caring and family support.

Encouraging visibility of services and people in recovery or who have lived experience within the community is also important to help not only the carers, but those who are struggling with the use of alcohol and drugs.

Developing work in Newcastle

Work in Newcastle is being developed within this area. Public Health have been engaging with British South Asian community leaders to enhance treatment and recovery efforts including carers. Two key meetings were held with stakeholders such as the Bangladeshi Association, local Imams, and university researchers. These meetings facilitated open dialogue on barriers to treatment, cultural sensitivities, and support systems, building trust and shared goals.

Engagement with the Health and Race Equality Forum (HAREF) emphasised the initiative's importance, with leaders showing enthusiasm for ongoing collaboration. A rough plan is being developed from these discussions, with next steps involving continued dialogue and refining the action plan to meet community needs. This approach highlights the value of community-led, culturally informed initiatives in promoting health equity.

Newcastle is also working with PROPS to fund a part time South Asian Muslim worker who will serve as a community connector to bridge the gap between community and support services. This is building on their existing effective practice in this space. The community connector worker will provide tailored support to facilitate access to support, ensuring carers, and families get the help they need in a culturally sensitive manner.

Personal reflection

The research highlights the importance of the voice from carers and communities, and those with lived experience. The importance of understanding the issues from those with lived experience who are supporting someone and working through any daily challenges. We must ensure that valuable information that we discover from research, such as this, is used to act and ensure that everyone has an opportunity to be supported and live well.

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

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

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

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

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

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

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

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

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

                                                          Quote from the letter to Prime Minister Sir Keir Starmer

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

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

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

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

Read the full letter below

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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.

Creating an out of this world children’s book to help families affected by substance use

Cassey Muir, Research Associate from Newcastle University


To celebrate #WorldBookDay, Cassey tells us about going beyond the research to co-produce a children's story book to help families affected by substance use which is now freely available.

“To take the findings from our lived experience and create something real for families and people beyond the world of research has been brilliant” 

Young person involved in the project

Creating something real: How we produced a children’s story book

When I had the opportunity to create a children’s story book based on some of my PhD research that could help families affected by substance use, I was really excited to get started with the project. Ever since I was little, I wanted to write a children’s storybook and I had even mentioned this at my PhD interview panel, so being part of this project was a dream come true in many ways. 

To be able to create a book that has such meaning for the children and families involved has been incredibly rewarding, if not emotionally challenging at times. To help shape the plot and character development based on the stories of the young people that I had talked to during my PhD, felt like an enormous privilege but also a weight to get right. I wanted to make sure the story reflected the different experiences of children, while other members of the team were making sure the story reflected parents and caregivers’ experiences. Working with the talented Danielle Slade (author) and Josie Brookes (illustrator) helped make this process go as smoothly as possible. They were empathetic to the stories of families and wanted to keep to the integrity of family’s experiences and impacts, while making a story that was engaging.

With the creative minds of Danielle and Josie, we worked with 15 family members who were affected by parental alcohol or drug use, three teachers, Coram Life Education, and Coram Beanstalk to co-produce this storybook. Using techniques like free writing to music, drawing different characters, and storyboarding ideas, we involved children and parents in the creative process from the start. Families were also able to see early mock-ups of the book and feedback their ideas on improvements to the story and share their preferences on illustrations. Josie and Danielle were really receptive to the ideas from children and parents and valued their input.

We met with teachers from local primary schools and practitioners from Coram to think about who the target age range of the book would be, how the book could be used within schools and practice, and how to help adults have conversations with children. Through these discussions we developed conversation prompts for adults that are at the back of the book. These prompts (for example, what do you think of the Yozzle?) can help with discussing the characters and themes within the book with children in one to ones, in groups, or within a whole class setting. Anyone can follow along with this story of Arti, a wishing star. We have received positive feedback from practitioners where this book has been used with younger children (5-8 years), older children as a discussion point for reflecting on childhood (14-16 years) as well as with children who have special educational needs and disabilities.

We have also recently collaborated with Newcastle Film Club to produce a ‘story time’ video of the book being read by the author. This video allows the book to be accessed more widely and can be used alongside the book. Being able to produce this video, with Amy Mains (Director and Editor) and Scott Anderson (Director of Photography), who are also both teachers, was a fun and unique experience. We set up the equipment and reshuffled the backdrop in Fenham Library and managed to shoot the film in under two hours, just in time for the library opening to the public. I think this video adds an extra bit of magic to the story, with soft music and twinkling sounds!

 

Beyond the world of research: Creatively disseminating research findings

For context on the book, Twinkle, Twinkle Arti is a free story book co-produced with and for children who experience parental alcohol and drug use. This book helps start conversations between trusted adults and affected children. The messages within the book are based on two linked studies around the needs of affected families, led by Fuse Researchers.

The Safe Space project, led by Ruth McGovern, found that many parents and caregivers find it difficult to talk to their child about substance use and the impact upon the child and family. Parents and caregivers spoke about wanting resources to help with these conversations. Alongside this, research led by me, explored the experiences and support needs of children and young people. Children and young people told me that they valued the importance of confiding in a trusted adult such as a teacher, social worker, or family support worker but often did not know who they could trust or talk to, and prioritised approaches within schools which promoted conversations about parental substance use.

The story book captures the emotional and social impacts of living in a difficult family situation, from the perspective of the child and the parent or caregiver, and highlights helpful strategies to support the child’s wellbeing, for example talking about your feelings.

Using out of this world storytelling and fictional characters, the findings from these two studies are told in a way that makes them accessible to families and practitioners and offers positive messages and validation not only to children but to parents/caregivers and practitioners who find it challenging to know how to broach this sensitive topic.

We are freely sharing this book with families, schools, and practitioners across the country. To help understand the usability and impact of the storybook, we are gathering feedback from practitioners with a short online survey. This feedback will contribute to informing further development of the book and additional resources that are needed. I hope the book can be used across many different settings (schools, social care, and voluntary organisations) and can be shared with families who want to have those conversations. Within schools, we hope it is used in whole class situations, to reduce the stigma and show children they are not alone. It’s a fun story with fictional characters, and I hope families feel the book is engaging and non-stigmatising.

Here is some of the feedback that we have received so far about the book.

A practitioner told us: “It is so meaningful for children to know about the Yozzle [fictional character depicting alcohol or drugs in the book] and how it makes them feel. What a very complex idea to get across to children and yet it has been achieved with such skill!”

A child who reviewed the book shared: “It [the story] shows you’re not on your own and that there are other stars [fictional character depicting trusted adults] to support you.”

A primary school teacher shared the following: “There were no problems at all using Twinkle, Twinkle Arti in a whole class situation. In fact, I think it worked well as an introduction because it wasn't only alcohol use that the children discussed it was mental health, feelings, and how to overcome problems.”

A parent who helped co-produce the book reflected: “I am proud of the book because other children won't have to go through what my children have."

I think it is really important for researchers to work collaboratively with public, practice, and policy partners and to engage in creative processes that open their research to wider audiences. Through this process, you might learn something new and have fun doing it. But don’t just take my word for it, here are the perspectives of the illustrator and young person involved in the project:

Josie, the story’s illustrator, says: “This has been a really inspirational project, and a joy to work with Danielle, the research team, and all the families involved. We collectively believed in the power of storytelling to get these important issues across, and the resulting book is something I am so proud to have been a part of making. I think children will connect with Arti, her colourful world, and her story. I am excited for it to be used as a positive resource with children and families, in opening up those very crucial conversations, whilst simultaneously being so enjoyable to read!”

A young person reflected: “This book is something I would have loved to have been able to give to ‘little’ me, having something that related to my home situation when I was a child. I feel rewarded to be able to do this for ‘me’ now, for little me going through all those hard times and for all the children who will read this book, who are going through something, have a hard home life, have parents who are struggling, anything.

I hope through the book, we are able to show them that they are not alone and that there are people around them who are there to give them love and support. Hopefully, the book can help reach them earlier than I was reached out to. To create a book that would educate and support whomever read it, no matter their age or background, to be more than a storybook and to be able to help them, even in a small subtle way. It is a chance to reach the children that need it through a storybook that they come across all the time in life. It is incredibly rewarding to have a book that exists, that will last and be passed on to different children who are in a variety of situations for years to come. I am very proud of it.

I sincerely hope the book not only entertains children at bedtime, but that it can in some ways soothe a child's worries. It was an honour to hear the brave accounts from families and even more so, that they have trusted us to put their feelings and stories into this book.”

Fuse researchers and lived experience expert at book launch event. From left to right: Ruth McGovern, Kira Terry, Cassey Muir and Debbie Smart 

If you would like to learn more about this research, then please go to the links at the bottom of this page. And if you would like to join Arti on her journey of bravery, self-discovery, and learning about the important of talking about your feelings then take a look at the story book or watch the video.

Find out more

• Download the book free.
• Listen to this Fuse podcast to hear Cassey discussing her research on social and emotional resilience in children and young people affected by parental substance use.
• Read this Fuse news article about Twinkle, Twinkle Arti.
• Read this Alcohol Action Ireland blog and listen to the podcast.

All illustrations by Josie Brookes

Supporting family carers of people living with dementia in a pandemic

Posted by Mark Parkinson, PhD in Health Psychology, Northumbria University

Social coping: offering family carers a lifeline in turbulent times

Despite our enduring efforts to battle COVID-19 and the headlines and attention the pandemic rightly warrants it is important not to lose sight of some of the separate public health issues which not only continue to grow apace in the background but may also be made worse by the social impact of the virus. Among the issues in danger of being overlooked is how the UK will respond to the growing number of people living with dementia which is set to reach one million by 2025.¹

Presently, family carers provide the bulk of care and reliance on family care is becoming even more essential given the lack of formal care available² and the Europe-wide shift away from reliance on formal care and towards ‘ageing in place’/ care in the community.³ However, a key issue is the high level of long-term stress family carers have to endure⁴ as a result of dealing with a combination of financial, social, mental and physical challenges over long periods of time and how this often leads to family care becoming unsustainable with reliance on formal care the only option. Family carers currently face a vicious cycle that threatens to derail family care itself-despite the wishes of carers and carees:

A key question is how this cycle can be avoided. Crucially, it is not the stress that threatens to derail family care, but how well family carers can COPE with stress. A critical coping strategy is carers’ capacity to seek out and receive effective emotional and practical support, particularly at times when they are most in need of it. This kind of coping strategy is called social coping (SC) and has been found to be effective in safeguarding mental health⁵ due to the positive interactions, support and assistance it can deliver.⁶

However, there is a pressing need to better understand what works to promote social coping. This calls for a deeper understanding of what helps or hinders SC and how this knowledge can be applied by providers of formal health and social services, together with the voluntary and charity sectors to promote social coping to make the family care of people living with dementia sustainable.

What we did

Our research, based on work carried out as part of a Fuse sponsored studentship, investigated ‘What works to support family carers of people living with dementia’. Coping⁷ and more specifically social coping⁸ was identified as important to ‘what works’ and this prompted follow-up post-doctoral research to investigate SC further. The findings (so far) can be found in our recently published article⁸ which highlights the need for formal providers to be aware of six key hindrances to family carers’ use of this important coping strategy:

Achieving a better balance between what helps and hinders the adoption of social coping is critical to promoting it and also pivotal to ensuring the long term sustainability of family care of people with dementia. The full report⁸ (briefly outlined here) was presented by the Chairman of Dementia UK to Helen Whately, the Minister for Care at Department of Health & Social Care, on 3 November. This is a work in progress and follow-up is already underway to reveal further insights into social coping theory. For example, how social coping might be used alongside other helpful coping strategies, the pinpointing of carer coping strategies that could be unhelpful in the long term, and the deeper exploration of how providers (health & social care, allied health care services and voluntary organisations) can put social coping into practice, including improving opportunities for carers and carees to socialise.

In the current climate it has never been more important to deepen our knowledge of coping and to separate carer coping strategies which are helpful, and lend themselves to making family care sustainable, from those that are unhelpful. Providing long-term family care for people living with dementia has never been easy, but the arrival of COVID-19 means family carers now need the additional lifeline of improved external support and the right incentives to accept this support⁹ if they are expected to navigate especially turbulent waters.



References

1. Prince, M., Knapp, M., Guerchet, M., McCrone, P., Prina, M., Comas-Herrera, A. & Rehill, A. (2014). Dementia UK: Update Second Edition. Report produced by King’s College London and the London School of Economics for the Alzheimer’s Society. Retrieved from: http://eprints.lse.ac.uk/59437/1/Dementia_UK_Second_edition_-_Overview.pdf 
2. Alzheimer’s Society. (2020). Facts for the media. Retrieved from: https://www.alzheimers.org.uk/about-us/news-and-media/facts-media
3. Glasby, J., & Thomas, S. (2018). Understanding and responding to the needs of the carers of people with dementia in the U.K., U.S. and beyond. Birmingham: University of Birmingham Press.
4. Fonareva, I., & Oken, B. S. (2014). Physiological and functional consequences of caregiving for relatives with dementia. International psychogeriatrics/IPA, 26(5): 725.
5. Norris, F. H., & Stevens, S. P. (2007). Community resilience and the principles of mass trauma intervention. Psychiatry: Interpersonal and Biological Processes, 70(4): 320-328.
6. Lee, C. Y. S., Anderson, J. R., Horowitz, J. L., & August, G. J. (2009). Family income and parenting: The role of parental depression and social support. Family Relations, 58(4): 417-430.
7. Parkinson, M., Carr, S. M., Rushmer, R., & Abley, C. (2016). Investigating what works to support family carers of people with dementia: a rapid realist review. Journal of Public Health. DOI:10.1093/pubmed/fdw100.
8. Parkinson, M., Carr, S.M. & Abley, C. (in press). Facilitating social coping-‘seeking emotional and practical support from others’-as a critical strategy in maintaining the family care of people with dementia. Journal of Health & Social Care, 00:1-12. http://dx.doi.org/10.1111/hsc.13159 
9. Egan, K. (in press). Digital technology, health and wellbeing and the COVID-19 pandemic: it's time to call forward informal carers from the back of the queue. In Seminars in Oncology Nursing. https://doi.org/10.1016/j.soncn.2020.151088

Research journey for hospice evaluating its innovative dementia care

Posted by Nicola Kendall, Namaste Lead, St Cuthbert’s Hospice and Dr Sonia Dalkin, Senior Lecturer in Public Health and Wellbeing and Lead of the Fuse Healthy Ageing Research Programme

To celebrate World Hospice and Palliative Care Day, we wanted to share part of St. Cuthbert’s Hospice’s research journey, in collaboration with Northumbria University. Specifically, we wanted to share some of the innovative activity that has been taking place in practice surrounding ‘Namaste Care’ and the evaluation of it with Fuse funding.

What is Namaste Care?

As dementia progresses, family carers describe a changing relationship and sense of loss, which can cause significant distress. Finding new ways of communicating is important to help the family carer and person with dementia to maintain a good quality of life. ‘The End-Of-Life Namaste Care Program for People with Dementia’ (Namaste Care) challenges the perception that people with advanced dementia are a ‘shell’, a ‘living death’; it provides a holistic approach based on the five senses. Early evidence suggest that it can improve communication and the relationships families and friends have with the person with dementia.

How has St. Cuthbert’s Hospice used it?

St Cuthbert’s Hospice in Durham has started to provide Namaste Care in the person’s own home, as opposed to its more traditional use in care homes. We train volunteers who are then matched with a person with dementia, in terms of personality, abilities and interests, for example. Volunteers visit the person, usually weekly for two hours and try to build a bond with the person living with dementia and the family.

Why did we want an evaluation?

Evaluating Namaste Care has proved challenging for many organisations. It is straightforward to measure reduced number of falls, less infections and reduced agitation, but teasing out the nuances of why the approach works requires more detailed study. Also, we were aware that our use of Namaste was somewhat novel, with only one other hospice in the UK implementing Namaste Care in people’s own homes. A team at Northumbria University, led by Dr Sonia Dalkin applied to the Fuse Pump Prime fund and was successful in attaining a small pot of funding to do some preliminary evaluation of our use of Namaste Care.

What did the evaluation find?

The preliminary research found that when used in people’s own homes Namaste Care has positive outcomes, such as increasing engagement and social interaction. Previously, social interaction had potentially been overlooked in the literature as an important outcome of Namaste Care. This was particularly important for carers who felt that their loved ones with dementia often didn’t have any interaction with others, beyond those living with them. The importance of matched volunteers was also highlighted, and special relationships were built between volunteers and the person with dementia. Family members would often use the time when the volunteer was present as respite as opposed to taking part in the session, and this highlighted interesting perspectives on their involvement in Namaste. The evidence suggested that those who care for a person with dementia at home provide continuous care and have little input from other services, therefore provision of two hours contact with a trained Namaste Care volunteer allowed them to concentrate on other things, knowing that the their loved one was in safe hands. This is in contrast to the usual delivery of Namaste Care in care homes, where family members may feel more able to get involved as they do not provide continuous care.

What next? 

Book for organisations and carers
interested in using the approach

• Delivery of Namaste Care in various settings
The ethos of the Namaste Care approach has proved transferable into various care settings at St Cuthbert’s hospice. We now run a Namaste inspired ‘Potting Shed’ Men’s Group and we deliver Namaste Care at the bedside in an acute hospital. We are also in the early stages of discussions about taking Namaste Care into prisons, either via staff training or training prisoner buddies. We are very proud to say that due to this and other work we have been shortlisted as finalists for ‘Best Team Award’ in the 10th National Dementia Care Awards 2019.

• Spreading the word
The Hospice has developed a training programme which is steadily gaining popularity. Nicola Kendall (Namaste Lead) has also written a book as a guide for other organisations and carers who are interested in using the approach: ‘Namaste Care for people living with advanced dementia - A practical guide for carers and professionals’. The book is now available from Jessica Kingsley Publishing.

• Research
Nicola has just attended the Namaste Care International Conference and continues to take Namaste Care from strength to strength at St Cuthbert’s Hospice. We are now planning to further evaluate our work, building on the findings of the preliminary evaluation and the guide book… Watch this space!