“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.

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

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

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

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

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

Co-designing for impact

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

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

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

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

To embed this approach into recruitment and training, we:

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

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

Extending learning into maternal mental health

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

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

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

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

Turning insights into action

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

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

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

Why this approach matters

By embedding a culture of continuous learning, we are:

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

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

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

Find out more at: waystowellness.org.uk

Image credits: Ways to Wellness Limited company number: 08798423

Experts by Experience challenge us to create opportunities for them to take the lead in research

Posted by Ang Broadbridge (Research and Evaluation Lead) and Ged Hazlehurst (Expert by Experience) Fulfilling Lives Newcastle Gateshead

Earlier this year Fuse and Fulfilling Lives Newcastle Gateshead co-chaired a Quarterly Research Meeting sharing initial findings from a joint research project that explored the reasons underlying high death rates among people with multiple and complex needs (MCN). There we asked attendees to consider the findings and help shape recommendations.

Now as we write up the findings during the height of the Covid-19 pandemic, we are reminded that drug related deaths and MCN issues have been a public health crisis long before the pandemic, though it has drawn an even sharper focus on health inequalities at this time.

The findings from the study will be available in a forthcoming end of project report but in this blog we wanted to go behind the scenes with Experts by Experience to share our experiences of co-production in public health research.

Some background

So what is Fulfilling Lives Newcastle Gateshead (FLNG), and what are Experts by Experience? FLNG is an eight-year learning programme looking to improve the lives of people with complex needs and build a trauma-informed approach within the services that support people across Newcastle and Gateshead. Experts by Experience are people with lived experience of multiple and complex needs, and have vital things to say that can help shape the future of how systems and services work for their peers.

Co-producing research

Co-production is bringing together the people using services and the people providing those services to share power and work collectively to design, develop or deliver improvements to them. This also involves seeing services and staff as agents for change and seeing people who use services as assets with skills, who in turn, gain from their contributions and move towards positive change. For example, Experts by Experience on the FLNG programme have developed training resources for Department for Work & Pensions staff raising awareness of MCN issues, which were rolled out across JobCentre Plus.

FLNG wants research to be genuinely co-produced and has invested in creating a National Vocational Qualification accredited peer research skills training package and local Peer Research Network. This is to support a shift from involvement led by professionals to an approach in which peers define the remit and research questions, leading on all aspects of the research design, delivery and dissemination.

Experts by Experience defining research problems

The beauty of the Fulfilling Lives programme has been our small team and the small caseloads; with at the most eight frontline practitioners each working full time with just 10-12 people. We work intimately with these people, building strong trusting relationships, getting to know their families, and being by their side through crisis.

Between 2014 and 2020 we worked with 267 people, during which time we experienced 27 deaths on programme. That is around 10% of the client cohort, so you can perhaps imagine the impact of that 10% on a small team who have been deeply involved in the lives of the people they have navigated through services.

We talked to our Experts by Experience Network about this and as the programme research lead I (Ang) was really wary about the sensitive subject matter and its potential for re-traumatising. My thinking was challenged when the Experts Network were really passionate about deaths in their community and told us they were already talking about it, often without much support, so not to shy away. Then they challenged us to think about how our co-production and peer research offer could dig deeper to explore this issue. We asked Experts by Experience to help us explore what it would look like for them to take a peer-led approach to this work. They really helped shape the ethics process, for example they told us to look within their Network for participants, as we could guarantee good support for people to discuss any issues that emerged out of participation. In doing so they, the Experts by Experience, identified the topic for this project.

What was the feedback from our co-produced research event? 

When we met for the Fuse QRM the purpose of the session was to study the initial findings gathered from the series of focus groups we ran exploring MCN deaths. It was interesting then that the feedback we received from the event, asking people’s views on what we found and what was surprising, clustered around co-production in research. This suggests that this research has the potential to challenge beliefs about the involvement of people with lived experience in public health research:

• People were surprised by the extent to which Experts by Experience were able to take on such a difficult subject, and;
• People were surprised by the normalisation of death within our Expert by Experience community. 

It is our hope that this acts as a springboard for more and better involvement of people with lived experience of multiple and complex needs in public health research. We have explored a sensitive and challenging subject with Experts by Experience who challenged us to create opportunities for them to take the lead. We hope that as our Peer Research Network grows, other researchers can build on the peer research model we utilised in this study to shape their own research projects.

FLNG is one of twelve programmes linked across England funded by the National Lottery Community Fund, looking to influence the system nationally. A Core Partnership of Changing Lives (lead partner), Mental Health Concern and Oasis Community Housing lead the programme’s activity, for more information visit http://www.fulfillinglives-ng.org.uk/


Images courtesy of http://www.fulfillinglives-ng.org.uk

The 'Wow' moments

Posted by Rosemary Rushmer, Professor of Knowledge Exchange in Public Health, and Dr Peter van der Graaf, AskFuse Research Manager, Fuse and Teesside University

From the 26-28 April, Fuse hosted the Third International Conference on Knowledge Exchange in Public Health in Newcastle-Gateshead. The conference explored “Evidence to Impact in Public Health" in partnership with Tranzo (Dutch Scientific Center for Care and Welfare) and the World Health Organization (WHO), Regional Office for Europe. More than 160 participants from five continents descended upon the Quayside to discuss the latest research and evidence on knowledge exchange practices through papers, posters, interactive workshops and soapbox sessions – and continued these deliberations during the conference reception and dinner, organised walks and yoga sessions.

How do you sum up a conference like this? We are used to filling in ‘happy sheets’ when we attend conferences, giving our scores on the speakers, the accommodation, and if the food was hot…but what about the ‘Wow!’ moments that participants share with each other in the informal spaces?

Below are a few of those hidden moments:

(Day 1: Keynote speaker Professor Bev Holmes, Vice-President, Research
& Impact at the Michael Smith Foundation for Health Research, Vancouver)

‘Wow, she has a lovely way of asking really difficult questions in such a nice, unthreatening way…’

(Day 2: Keynote speaker Professor Hans Van Oers,
Professor in Public Health, Tranzo, Tilburg University)

‘Wow, how did they manage to carry out that research against all that opposition and yet laugh about it now… you can have a good time, be funny, and serious as well…’

(Day 1: Keynote speaker Professor Kieran Walshe, Professor of
 Health Policy & Management, Manchester Business School)

‘Hmm, we can learn about innovation in public health from the car industry and Amazon…’

‘(Sigh) Is that how much we spend on pharmaceutical research and how little we spend on working together to get evidence used. That needs to change…’

(Day 2: Keynote speaker Claudia Stein, Director of the Division of Information,
 Evidence, Research & Innovation, World Health Organisation (WHO))

‘Wow’ it’s that last presentation of the conference and the room is still full.’

(Day 2: Professor Peter Kelly, Director of Public Health
& Adult Social Services, Stockton Borough Council)

‘Goodness! Your Directors of Public Health (DsPH) have taken time out to chair sessions and present…’ (When I fed this back to one DsPH, to show the planning committee’s appreciation of their participation, he was surprised at the delegates surprise… ‘What on earth happens elsewhere…?’ he said.






Maybe we, in Fuse, do have a ‘special relationship’ with our policy and practice partner that makes Knowledge Exchange in public health easier in the North East of England. We, the organising committee, were wowed by the enthusiasm and engagement of all participants during the conference. Discussions were lively with active and positive contributions from not only researchers but in particular public health practitioners and policy makers. Their engagement in the conference is the real evidence of how far we have come with knowledge exchange in the North East and the impact we are having together on public health and local wellbeing, and this is being noticed internationally.

Here's to the next conference!

Visit the Fuse website to find out more about the conference: www.fuse.ac.uk