Challenging Stigma, an Interview with Sarah Hughes, CEO of Mind in Cambridgeshire
Sarah Hughes is CEO of the mental health charity Mind in Cambridgeshire and has worked in mental health services for 23 years, both in community and secure settings. Motivated by a family history of serious and enduring mental illness Sarah has always been an advocate of quality driven compassionate interventions that encourage the notion of empowerment, recovery and hope. Sarah has gone onto study at the Tavistock and Portman clinic looking at the unconscious and systemic life of organisations.
Interview by Lorna Rouse.
Can you start by telling me a bit about Mind and what Mind in Cambridgeshire does?
Mind is a complex organisation; it’s a federation so we’re a local Mind affiliated to National Mind, which is based in London. There are 200 plus local Mind associations round the country, some are quite small with two or three volunteers running drop-in services or groups. We probably fall into the medium sized organisation with a combination of paid staff and volunteers covering quite a large area. We provide services on behalf of the clinical commissioning group, the local authority and other funders like the Lottery and Comic Relief. There are also bigger more prolific Minds which cover all age groups. Mind in Cambridgeshire are largely focused on adult mental health and we provide services that include counselling and wellbeing activities for people with a range of conditions, from mild to moderate depression and anxiety to debilitating conditions like schizophrenia or personality disorder. We’re a completely separate charity and have to fund our own work, but we use the very well-known Mind brand to try and get the message out there. We share the same values; we believe that people with mental health problems are absolutely core members of society. On that basis we rub along quite nicely and help each other out. Largely we provide services but we also do campaigning work, such as the Time to Talk campaign.
Can you tell me a bit about the Time to Talk campaign?
The Time to Talk campaign was originally launched around 2007 with a large investment from the government and Lottery. It was a national campaign to deal with stigma and mental health problems. Initially, lots of local Mind associations and other organisations were funded with small pots of money to deliver a local project addressing the larger priorities of the campaign. We delivered one trying to create parity of esteem between physical health and mental health. Recently we also ran a Comic Relief project called Think Right which did much the same sort of thing but was more focused on campaigning. Time to Talk aimed to bring mental health onto an equal playing field with physical illnesses and to allow people to feel safe to just start the conversation. There’s so much shame attached to feelings of mental illness or distress. That’s about fear and anxiety in the population because there are a lot of myths around mental illness. So Time to Talk is doing incredibly important work and it is revolutionary in this country to have a TV advert that’s on at prime time talking about mental illness. It’s probably one of the brightest things that I’ve seen from a campaigning point of view in my career. It’s changed the nature of conversations on the street. We’re not there yet by any stretch of the imagination. Discrimination isn’t gone and I don’t believe it will ever disappear totally but it will be regarded in the same way as other stigmas like sexism, racism and homophobia. For people who are experiencing mental distress of any kind the message currently is that they can be excluded quite easily. We’re saying the message actually should be that you need to be included because by being included you have a better chance of recovery as you do if you’d had cancer for instance. Time to change is working on stamping on the myths, for example, the idea that if somebody’s got a mental illness they’re more likely to be violent. That’s just nonsense; they’re more likely to be attacked than they are to attack. Around 2010 the campaign had another massive investment which reflected the good work already done in making a real dent in the notion that mental illness was something that other people get. One in four people will have a mental illness of some kind and we believe that is quite a conservative estimate. We know from our work that there are people that come to us who have been suffering for years but have never got any help and we believe that time to change has opened up the conversation on the ground and that has made a difference.
What led to your interest in mental health?
Well I come from a deprived part of North London called Finsbury Park and I grew up with a really colourful community. I have family members who spent time in psychiatric hospitals and I guess from a really young age I thought this is what I want to do and so by about the age of fourteen I was volunteering in mental health community groups. I got my first paid job when I was seventeen and began managing services when I was about twenty one. I think that I was drawn to it because I felt I had a personal knowledge from family and friends and coming from a family that was very bohemian and open, people that lived on our street who were psychiatric patients would often knock on our door and my parents would always look after them. I eventually trained to be a social worker, I’ve never practised in a statutory environment but it was incredibly good training that I still live and work by. I’ve worked for a number of Mind organisations, I’ve worked in Cambridgeshire now for ten years and I have to say that I really love my job. I wake up every morning and although I know that I might be facing some challenges I always think that this is the thing that makes a difference - creating a safe environment for people to come, not feel judged and to be able to talk about how they’re feeling and be listened to. That’s incredibly important. After the birth of my first child I suffered from post natal depression and you don’t really know until you do how incredibly scary it is. I think that has also informed my learning and given me a real sense of the importance of letting people know there is hope and that you can recover. So it’s been a long journey but I can’t imagine doing anything else. My passion is mental health and it always will be.
In what ways do people tend to experience stigma?
It happens in both subtle and overt ways. We know from research that people experience stigma primarily within their family and friends group. That’s often because they might be the people you spend most time with but also they’ll be the people that’ll be the most frightened. Often mental illness or distress can’t be understood easily by people around you. Friends and family also have expectations that are very different and so people often talk about friends drifting off and people getting fed up, irritated, impatient and intolerant. Of course then there is the workplace. It’s critical in work places that there is an understanding of mental distress and organisations like ours try to address that through training for instance. There are all these fantasies out there about what will happen if somebody has got a condition or an experience of mental distress - they’re going to be off sick or I’m not going to be able to ask them to do any work and often that’s not the case. With the right kind of support and understanding people can continue to go to work with feelings of distress. We know it’s possible but you do have to have the knowledge and support and I think that employers particularly find it difficult to simply know what to do..
What are the equality laws like around mental health?
Mental health is now covered under disability discrimination policies and the equalities act but people are less likely to force the issue under disability with mental health than they might be if they have another condition. We’re trying to shift that balance and educate employers and employees as to where mental health sits in relation to policy. It is covered but I think it’s still not quite understood as a disability.
Do you think the main basis of stigma and discrimination is fear?
Absolutely. Fear is the primary driver for discriminatory behaviour. The fear that you won’t understand and therefore you’re going to lose the person that’s become unwell, the fear that they will behave oddly and become troublesome in some way. I’ve delivered training to lots of different organisations around the country and there will always be somebody who says ‘but aren’t they likely to be violent? Aren’t you scared doing the job that you do?’ Actually that’s just not true. In twenty two years I’ve been threatened probably twice and that was because I was doing the wrong thing at the time. I spoke to somebody who worked in Tesco’s and in eighteen months he had been threatened probably six or seven times. So I will always put it into that perspective. Somebody with mental distress is really vulnerable to everybody around them and that’s always forgotten. There’s somebody who is suffering and the suffering is internal, you often can’t see it but it’s nonetheless severe, it can be life destroying. When people keep bringing it back to fear or myths about mental illness I just try and bring it back to the person, remember the individual that’s suffering and imagine what that must be like. When someone is emotionally distressed or diagnosed with a condition it is a frightening and incredibly unsettling experience. So you do actually see people then who were previously a bit suspicious go ‘ah okay’ because they’ve been reminded about the human being, the human cost.
Do you think informing people is the best way of reducing stigma?
Yes absolutely, we know that educating people and providing really good quality information and for instance, getting people with the lived experience to come and talk and deliver training makes a massive difference. We have seen individuals change their views quite dramatically.
Do you think attitudes have changed over time?
I think they have. I mean I wouldn’t say that we’re in a place that’s utopian but I know that from when I started working in mental health, it’s leaps and bounds in a different place. That starts from the fact that we don’t have big sprawling psychiatric hospitals any more where people stay for ten or fifteen years but that people are more integrated into the community. That began the shift and you can’t underestimate the significance of those moments in the late eighties and early nineties. Since then we’ve seen a slow movement to a community perspective away from that culture of institutionalisation . The feeling is different and certainly the young people that we’ve talked to it’s on their radar now and the concept of emotional intelligence and resilience is a part of their curriculum almost. That’s incredibly important but I do know that people with mental health problems still don’t feel entirely accepted and going back to the family, that’s often because of those emotional relationships. So although I think it has shifted hugely from a society perspective there’s still some way to go before it’s truly embedded into our cultural norm. For example, if somebody has got skin cancer as a clinician you would say ‘right we’ll get you will in the next week, have six sessions of this treatment plus three of those and that will be the complete package.’ What we generally say to people with mental health problems is ‘we know what will probably help to get you better but you would need sixteen sessions of this, four sessions of that and probably a couple of visits a week for six months but unfortunately you can only have one of those things because of funding and waiting lists..’ There is still that lack of parity. I think on a human level it is shifting – the response to Robin William’s death for instance was powerful. There were still some very cruel heartless and ridiculous comments made which were very distressing, but in the main there was an outpouring of compassion. It gave an important message that nobody is immune and I think it was well held in many parts of the media.
Did you get an increase in contact after Robin William’s death?
We did, one of my services since the 31st July, and it’s now the 28th August, has had a staggering 54 referrals. We normally get 54 over a 4 month period.
There was a lot in the media and social media after Robin William’s death and I wondered if 20 years ago it might have been more swept under the carpet.
Absolutely you’re right I think that if it was twenty years ago we wouldn’t be talking about it, it would be something that was discussed in shame whereas now I think it was discussed in the main with compassion at the forefront and despair as opposed to criticism and judgement. I think that’s an important distinction to make, that this wasn’t something that we considered with shame but with despair and sadness. We’re just about to start a massive stop suicide campaign, in partnership with other organisations. The aim is to get the message out there that you do not have to be a professional to make a difference, that just connecting, asking somebody how they are, asking somebody ‘are you feeling suicidal?’ actually could save lives. There is a great myth out there that talking about suicide will make somebody kill themselves. That’s not true, we do know that poor media reporting can trigger suicidal thoughts but asking somebody if they’re feeling that way doesn’t make them kill themselves. It’s like the find Mike campaign at the beginning of the year. A guy called Johnny Benjamin started up this campaign to find a guy he called Mike and Mike was somebody who walked past him on a cold windy morning when Johnny was trying to jump off London bridge ‘Mike’ talked him down and saved his life but Johnny being in a bit of a state didn’t exchange numbers or names. Some years later Johnny set up this campaign to find Mike to thank him for saving his life. It was a beautiful campaign full of hope and joy and he did find Mike whose name is actually Neil and Neil basically is just an ordinary guy who asked the question and said ‘do you want to talk mate?’ He was on his way to work in a rush but took a moment to stop and taking a moment to stop was all it took to save Johnny’s life so I think that we’ve come a long way in relation to understanding suicide.
Do you have any advice for people who are interested in working in mental health?
I would say that definitely getting the right qualifications is important but I originally started as a volunteer in my teens but its never too late, because really learning about the environment and understanding people is critical and should come first, so for me volunteering is a great route into discovering what you want to do and where you want to be. Within mental health there are a range of opportunities. When you work for a third sector organisation like we are they are often quite creative working environments because we are not bound by statutory duties to section people, to administer medication and so we have a different experience. Then there’s nursing, psychiatry, social work so it’s very much about getting in there and seeing what it is that you want to do. Here we have counsellors, recovery workers, wellbeing workers and all of them started out in different ways. Some were social workers, therapists, counsellors, some were volunteers and some were people with the lived experience. Whatever the route is it’s very much about throwing yourself into the environment, contact your local Mind organisation and see what volunteering opportunities they’ve got. There are lots of routes but I would always recommend volunteering, you can’t beat living it really, being part of a team that’s working with people.
What are your current projects at Mind?
We’ve got loads going on. We are currently providing a wellbeing service which provides groups and one-to-ones for people with a range of mental health problems. Some of the groups include the concept of recovery and the concept of recovery in mental health doesn’t mean cure it means coming to terms with and still living a fulfilling life. We’re doing work on symptom management, anger management, communication skills, managing feelings of self-harm. Then we have the support to recovery service which works with people who have more complex needs within their homes or their place of choice on a one-to-one basis. That’s about helping them to live a more suitable lifestyle for them, supporting them to do various things, support with living skills for instance. Our changing lives service is a combination of counselling and improving access to psychological therapies, such as CBT. All of these services are highly regarded and have lots of referrals coming to them. We host the service user network on behalf of the local authority focusing on service user engagement. We also have a massive training service which trains in places all around the country. It’s been very positive and we cover things like mental health first aid, skills for dealing with people who are in distress, suicide prevention, personality disorder – there’s a massive list.
That’s a real range.
We think it’s important to have a range, that it’s not just about providing services to individuals, which is incredibly important, but what runs alongside that is campaigning and training. I don’t think you can do one thing without the other. We need to be sending a clear message to our service users that not only are we going to support you but we’re going to advocate for you in the local community. I wouldn’t ever be comfortable just providing the service. If a person comes to us they know that we’re doing a bigger job, that we have their absolute interests at heart.
What are your hopes for the future?
I have big hopes, we have lots of aspirations to develop very interesting services. We’re about to embark on a new innovation with partners including the local authority looking at resilience, bringing knowledge to the everyday person on the street about mental health and resilience. What we’re saying to people is if you get the concept of resilience and the tools to give yourself that sense of being able to cope you’re less likely to suffer from mental distress or react to traumatic events in a negative way. My aspirations for this organisation are very much about just expanding our range. If one in four people need support in Cambridgeshire then all of the mental health organisations that provide services, including the mental health trust and primary care, are not touching the surface. I would like to see all organisations providing services to more people. It doesn’t have to be us either, I don’t care who provides it as long as they’re doing a good job. It doesn’t have to be us, it has to be better than good.
Thank you very much.