Interview with Chair of the board of the Anti-Stigma Network

Karen, in your role as Chief Exec at Phoenix you have been at the forefront of pioneering anti-stigma work and calling out unfair policies and practises over the years, why has challenging stigma always been a priority for you?

Our job at Phoenix is to support individuals, families and communities to recover. And Stigma interferes with our ability to do that.

Stigma prevents people from accessing the help they need whether that is support with drug or alcohol use or just basic health care, or even thinking that help is available. It takes away hope for people, their families and their communities.

As a charity, every block we experience trying to support people ultimately has its roots in stigma, prejudiced views, discriminatory beliefs and shaming practices and approaches.

For me its obvious if something is getting in your way of achieving your purpose you need to address it.

But it was a big decision, Phoenix has a history of fostering social change but hadn’t for many years taken on a campaigning role. It was important to ensure the whole organisation understood why we would take stigma on and agreed with the need to. Of course, they did and now over 90% of Phoenix staff think it is an important thing that Phoenix does.

Can you give us an insight into the ‘behind the scenes’ at the Anti-Stigma Network (ASN) – How did you come up with the idea and how did you develop it?

I have wanted for some years to broaden the work we do within Phoenix. We knew we could do more if we could work with others. There are lots of organisations and individuals in the sector working to highlight and tackle stigma. Stigma expresses itself in many different forms so there is plenty of work for us all to do, but I wanted to try to create something that harnessed all of that and gave us a common goal of ending stigma.

So, over the years I have discussed the idea with many people, come up with various approaches.

But the impetus of the latest drug strategy made me think that we had to do something now. If not now, when we have the attention of national and local government through the drug strategy, then when?

That’s not to say the drug strategy is focusing on stigma, it is a really welcome strategy in many ways, but in itself and its messaging it is stigmatising. But it is an opportunity to have that conversation with people such as politicians, government officials, media, people working in health and social care.

So, I first spoke with Danny Hames who leads the NHS Addiction Provider Alliance who do great work on stigma too and we agreed to give it a go and see what we could create and who would help.

And within a short space of time, we had a steering group that started to create some ideas on how we could create a network to end stigma. But we have really been led by the experience of people who face stigma every day.

You launched the network with a soft launch a couple of months ago and you have seen people from across different organisations and sectors sign up to become members, can you tell us a bit about what is next for the network and how you will keep up the momentum?

We decided to start with individual membership of the ASN as the commitment to end stigma comes from a set of personal values and beliefs. We are, this month, going to open up to organisational membership and in return are asking leaders of organisations to commit to the aims of the network in a very practical way. We will want to see member organisations looking at their own policies and approaches, understanding how they can share knowledge and understanding on stigma and its impact and take steps to combat stigma when they see it.

We are initially focusing on the health and social care sector but do aim to move out into other sectors as we progress and gain learning. We would want to see a broad range of organisations joining us.

Our immediate term plans are to recruit volunteers with lived experience to support our work and to work more formally with lived and living experience groups to provide training, spread our knowledge to other organisations and eventually influence policy and policy changes.

There has been a lot of anti-stigma campaigns across the sector over the years, how do you think that the Anti-Stigma Network will lead to real change?

By working together and sustaining the sector’s focus on it. By supporting each other to listen and learn together. By starting with ourselves and understanding how the sector stigmatises and then sharing that learning and reflection with our colleagues in the broader health and social care sector.

By committing to this for the long haul, by someone out there giving us some money for a sustained period, so we can recruit people with lived experience to lead the agenda.

By being the safe place that we all can come to learn and by us all sharing that learning with others.

Can we ever really beat stigma?

Abso-bloody-lutely, Yes!!

And by beating it I mean – it is understood and not accepted by general society. Of course, I can’t say that we will get to a time when no one has stigmatising views or beliefs. But I do believe we can get to a time when it is unacceptable to voice them or act on them.

How do you stay hopeful?

Because we have so many examples over history, and indeed recent history, where with focus, action and passionate people, societies have learnt how they discriminate against groups and the negative impact that has. It is accepted in law that we don’t treat people differently because of the colour of their skin, their gender or the sex of the person they have a relationship with. We have also made massive strides in public understanding of mental health and disability.

So, I have no doubt we can do the same to improve understanding of dependency and addiction.