“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.

Amplifying voices to tackle inequalities in South Asian and Muslim communities

Posted by Zeibeda Sattar, Assistant Professor in Health Policy, Northumbria University

L-R: Greta Defeyter, Humaira Khan and Zeb Sattar 

I recently had the opportunity to chair the Health Inequalities Symposium hosted by the Centre for Health and Social Equity (CHASE) at Northumbria University, in collaboration with Fuse. It was an incredible event that brought together over 100 people, including researchers, policymakers, healthcare providers, and community members, all focused on tackling the pressing health challenges facing South Asian and Muslim (SAM) communities. The main goal was clear: to find ways to bridge the gap between research and real-world impact.

The presentations were enlightening and underscored how critical it is to engage with minority communities effectively to shape public health services. Each speaker highlighted a different, but equally important, health issue impacting SAM communities. Public partner Humaira Khan, who co-chaired the symposium, pointed out that the mental health challenges facing South Asian and Muslim are often misunderstood and stigmatised. Hearing her talk about the need for culturally competent healthcare really hit home. Her words - “researchers are warriors; they don’t fight for themselves - they amplify the voices of the people” - perfectly captured why events like this matter.

“researchers are warriors; they don’t fight for themselves - they amplify the voices of the people” 

Humaira Khan, public partner

Dr Sarah Croke from the University of Manchester spoke about the language and cultural barriers that often lead to untreated health issues. This can leave community members struggling because healthcare services aren’t designed with South Asian and Muslim needs in mind. Dr Saeed Ahmed from Sunderland Royal Hospital took on the tough topic of organ donation disparities. He pointed out the harsh reality: SAM communities are in desperate need of organ transplants but are also among the least likely to donate. His call to raise awareness and educate was powerful, especially when he reminded us that one donor can change up to nine lives.

There were also discussions about everyday barriers that many of us face but rarely see addressed. Professor Defeyter from Northumbria University talked about the lack of culturally appropriate meals, like halal options, in schools. It was a reminder of how even things like food choices can create a sense of exclusion for our children and why legal changes to recognise cultural diversity are long overdue.

I found Simon Luddington’s (SearchNewcastle) presentation about the West-End Befrienders project particularly inspiring. It’s easy to forget how isolating language barriers can be and how vital social connections are for our wellbeing. Their work in bringing people together, especially in helping with access to primary care and breaking down isolation, felt like a model that should be replicated.

One of the more challenging discussions was around drug and alcohol use in our communities. Lydia Lochhead’s (Northumbria University) research laid bare the stigma that prevents so many from seeking help. It’s a tough conversation to have, but hearing about Mushtaq Dakri’s community-led approach to addiction support was a beacon of hope. They offer a holistic service - combining therapy, physical activity, and spirituality - and it’s designed by and for the SAM community. Knowing there’s a women-only support space now available shows their commitment to evolving and meeting community needs.

Fuse Associate Director Dr Floor Christie and Dr Rawand Jarrar from Sunderland University, wrapped up the day with their work on improving cancer screening uptake among Muslim women. Their workshops have reached over 260 women, and it’s encouraging to see how culturally sensitive approaches can genuinely improve health outcomes. This was a reminder of how vital it is to build services that reflect our communities.

As I reflect on the symposium, it’s clear to me that these health inequalities are not just about accessing services - they’re about how these services are designed and delivered. The urgency to address these gaps cannot be overstated. The event reinforced the need for services that truly understand and respect South Asian and Muslim communities, going beyond just offering a service to creating environments where people feel welcomed, understood, and valued.

Leaving the symposium, I felt hopeful. Change is possible, but it won’t happen without consistent engagement with our communities. Trust needs to be built, and community voices must be represented and acted upon. The gap between research and impact can be bridged if we keep pushing for culturally relevant, accessible, and respectful health services.

Plans are already in place for a follow-up symposium in November, focusing once again on the health inequalities that continue to affect SAM communities. I urge everyone to get involved. This is our chance to be part of the change and to make our voices heard in the ongoing fight for a more equitable health system. Sign-up details will be shared soon, and I hope to see more of us there - because turning these conversations into action is how we create a healthier future for all of us.