Speaking out on stigma

Citation

French, O. (2013), "Speaking out on stigma", Advances in Dual Diagnosis, Vol. 6 No. 1. https://doi.org/10.1108/add.2013.54106aaa.002

Speaking out on stigma

Article Type: News item From: Advances in Dual Diagnosis, Volume 6, Issue 1

At an October event in the House of Lords, national charity Adfam launched the report Challenging Stigma: Tackling the Prejudice Experienced by the Families of Drug and Alcohol Users. Based on focus group research across the country, the report aimed to set out the family’s perspective on the stigma associated with substance use.

Adfam’s Chief Executive Vivienne Evans OBE, introducing the report, said: “drug use doesn’t just affect individuals: families are also at the frontline of addiction. But they’re often hidden from policy discussions, and debate on stigma is no different”. Adfam was originally launched by the mother of a heroin user in 1984, and aims to ensure that the family is not forgotten in the wider debate on addiction.

The report builds on a growing body of research on stigma and substance use. According to the UK Drug Policy Commission, 23 percent of people believe that most people would not become dependent on drugs if they had good parents; and one in three agreed that parents would be foolish to let their children play with the children of a person with a history of drug dependence. This blame culture, and the idea of stigma by association, mean that families often find themselves defined by the same “addict” label attributed to their drug using relatives: Evans spoke of how “the stigma experienced by families is similar to that suffered by drug and alcohol users themselves”. The report quotes one mother from Newcastle, who felt that “because there’s a drug user or an alcoholic in the family, a lot of services think the whole family’s the same”.

“Hiding behind a mask”

Janet*, whose son has struggled to access effective care for his dual diagnoses of alcohol addiction and mental health problems, spoke to the assembled crowd of drug policy experts, politicians and practitioners. She described her own feelings of being a “bad mother”, and how she felt the need to “hide behind a mask” to avoid public censure: “stigma was seeping into every crack of my life, and of my family’s life”.

In Janet’s case, the stigma presented an extra challenge in an already difficult situation – trying to secure effective treatment and mental health services for her son. A doctor told him that “if you’re drinking, the mental health team can’t help you” and Janet noticed that hospital staff didn’t engage with him like they did other patients. The idea that their loved one is outside the remit of professional help contributes to deep feelings of helplessness for families.

Permanence is also a key feature of stigma for families, leaving an indelible mark on their lives and reputations: once stigma has been established, families find it impossible to escape from. They experience it whether or not the user is in recovery, and whatever their approach has been to dealing with addiction in the family: if they completely disengage then they can be criticised for not “standing by” their family in a time of need, but if they support them day in, day out, they are derided as foolish or “walkovers”. A wife from London who took part in the research recalled: “I had people saying to me – you must be a lowlife, because why would you want to be with a heroin addict?”

Stigma in practice

But stigma is not just an abstract concept, and these are not simply sad stories: its manifestations as isolation, stress, guilt and anxiety have real, tangible impacts on day to day life – not least on the family’s health and wellbeing. Janet’s other son became depressed, as did her husband: “I almost took my own life. That’s how bad it got”.

Social invitations dry up, children are targeted by bullies, friends and family withdraw their trust around money, and colleagues at work can behave differently. One family member interviewed for the research spoke about how friends would move their handbags away from her at social events, thinking she might steal for her son, and how her employer took away cash-handling responsibilities.

The family and recovery

When families, partners and carers are involved in recovery, substance users are more likely to come forward and seek support, more likely to complete treatment, and have a better chance of maintaining positive changes afterwards. This is increasingly recognised, including by the Government’s own Drug Strategy, and by the Advisory Council on the Misuse of Drugs.

But a key message from the report is that stigma inhibits families from accessing support, either for themselves or the drug user. The fear of coming forward, therefore, presents a real barrier to recovery for both substance users and their families.

Janet noted that “when family members access help for themselves it can often help change the person using drugs or alcohol: this is a really important fact that we’ve got to hold on to”. This is echoed by the voice of an ex-substance user in the report, who said that “my mum sought support and, in as quickly as two weeks, that support had a positive effect on my addiction…it made me more able to go down the right road”.

As Evans explained, “reduced stigma means more families coming forward for support. This means their own health and wellbeing improves, and they’re in a better position to improve recovery outcomes for their loved ones”. She says that this relationship – between reducing stigma, accessing support and securing recovery – is one of Adfam’s key focuses for 2013.

Improving family support

Adfam cited the report as evidence that the support for families affected by a loved one’s substance use must be improved and expanded. Evans argued that if the role of families in drug and alcohol treatment is to meet its full potential, then they need to have access to support for their own needs too: “families need to know that there are services out there to help them”. Adfam lists around 150 such services on its online database, but provision and awareness is patchy across the country.

Families like Janet’s, who are dealing with co-morbidity issues, are likely to come into contact with a number of different services, all of which have an opportunity to reach out to relatives and offer or signpost support for their own needs. These discussions can take place whether or not the professional feels in a position to work with the substance user at that time – that is, the family can still be engaged even if the substance user is not. Some mental health professionals may be uncomfortable with substance use issues, and vice versa; families may feel they lack the skills to work with either, but have not had the choice. Practitioners need to recognise the expertise families have gained through experience, and try to engage them positively in services – as well as leading to more effective care, this involvement can help families to feel less stigmatised.

Janet’s experience was that “the worst thing about stigma is the isolation: I had absolutely nobody to talk to about it”. By reducing this isolation, family support services can create their own recovery movement: but, as the report concludes, as long as stigma persists, the goal of sustained recovery will remain out of reach for many substance users and their families.

Note: *Name changed

The production of Challenging Stigma was supported by an educational grant from Reckitt Benckiser Pharmaceuticals and is available from: www.adfam.org.uk; Contact policy@adfam.org.uk for more information.

Oliver FrenchPolicy and Communications Coordinator, Adfam