Therapy Today October 2014
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| ‘The other aspect is that we are not very good as a society at responding to people who are grieving. We expect grief to be got over quickly. The person who has died is cloaked in silence and that is almost like a second death for the bereaved person because you feel you can no longer allow that person to live in your memory. It’s like cutting off the relationship. Talking about the person who has died, telling their story, is maintaining that relationship.’
Isolation of grief These conversations, the telling of stories about life and death, are what the festival hopes to inspire. Jane Harris, an accredited counsellor and supervisor, also makes films with her husband Jimmy Edmonds, a TV documentary film maker. When their son Josh died in a road traffic accident in Vietnam, aged just 22, her two professional worlds merged. ‘It’s not that strange – film and therapy are both about relationship with people,’ she says. She and Jimmy made Beyond Goodbye, a film about Josh’s funeral that, by capturing the preparations and the event itself, created a record and celebration of his life too. Since then they have completed Say Their Name for the charity The Compassionate Friends – a series of interviews with parents whose child has died and siblings – that they will be presenting during the festival. ‘Bereaved people and bereaved parents in particular can be very isolated in their grief and the silence around that aloneness is deafening,’ says Harris. ‘You walk into a room and there is almost a hush. You are like the bad fairy at the wedding. People project their fears onto you; they think your being there will somehow mean their child will die. Beyond Goodbye was our way of saying goodbye to Josh. But it was also about bringing death into the open and challenging the silence and fear that his death seemed to bring up in us and in others. By making films and writing about it, we are making the statement that this silence is not OK. We wanted to do something creative and constructive that would move things forward by opening up conversations. ‘People who have seen our films tell us they now feel more comfortable about simply saying they don’t know what to say to someone who is bereaved, which is so much better than avoidance, or silence, or platitudes. Bereaved people aren’t different; they are people who have been bereaved and they need to continue to be part of their community, their networks, however difficult that might be.’ GP Gillian Rice hopes that the emerging trend in the NHS towards supporting people to die at home will heal the huge rift that has emerged between the living and the dead in the past century, as death and funerals have become increasingly hospitalised and professionalised. Rice, with poet Clare Williamson and artist Eleanor Glover, will be leading a festival workshop on the art and writing group, Shadow into Light, that they ran for bereaved people from her Bedminster surgery in Bristol. ‘I sense that death is coming back into the community,’ Rice says. ‘There has been an increasing awareness among doctors that we need to be much more open to talking about death and dying, probably coming out of the hospice movement. We are nowhere near the point where people are relaxed around death, but more people are having the experience of being around someone who is dying and being present at the death and more people are opting to spend the terminal phase at home. I think that’s bringing death back into the community and hopefully, ultimately, that will produce a generation of people for whom death is less frightening and who won’t feel the only safe place to die is in hospital.’ Talking about death The festival includes a series of death cafés, hosted by OxBel – Oxfordshire Befriending for Life – part of Age UK Oxfordshire. The death café movement (it is now a worldwide phenomenon, with nearly 1,000 events in 23 countries) was launched three years ago by Jon Underwood. A Buddhist, he wanted to provide spaces for people to meet and talk about death, unstructured and in any way they wished. Death cafés are essentially pop-up events, although Underwood hopes shortly to open a permanent venue in London, which will host cultural events alongside serving the more usual conventional skinny lattés, cakes and teas. ‘People come to the death cafés for their own reasons,’ he says. ‘Personally I come to it through Buddhism, from a wisdom tradition that believes that looking at death can be helpful in life, and that’s how I experience it. It’s an important opportunity to regulate my mental health and have a happy life. It combats complacency. It reminds me that the next minute in my life is not promised and that I need to make the most of it.’ Joan Gardner, OxBel Coordinator, was inspired to start hosting death cafés in Oxford by hearing Jon Underwood speak at the 2012 Kicking the Bucket festival. OxBel’s core work is supporting seriously ill people and their families in the last 12 to 18 months of life. ‘The subject of death generates all sorts of emotions – curiosity, intrigue, fear, vivid recollections. I think we are all, at some level, eager to hear and share and maybe learn from other people’s stories and experiences,’ she believes. ‘When I attended the death café at the first Kicking the Bucket festival, I was struck by the quality of the conversations – the way they immediately went beyond the superficial and how complete strangers in the room seemed to connect in a way that felt authentic. That is what convinced me that OxBel was in a perfect position to offer similar opportunities for people with an appetite for this kind of exploration. ‘We hope too to encourage others going about their everyday lives to spend a little time thinking and talking about living well and aiming to die with as few regrets as possible. And the publicity is fantastic for starting lots of impromptu chats about why talking about death might make it just a little less scary, a little more normal and natural.’ Alongside conversations about death, medical advances have created another conversation that is becoming increasingly urgent – about decisions to prolong or end life. Chris Larner will be performing his one-man play, An Instinct for Kindness, at the festival. It’s about his ex-wife Allyson’s decision to end her own life at Dignitas in Switzerland. By then very severely disabled by multiple sclerosis, Allyson asked Chris and her sister to accompany her. ‘When we came back on the plane together we felt like we had been to the gates of Hades and back. Allyson was an actress and I am an actor and director. I decided I had to tell the story properly, and in a formal setting. The experience was burning a hole in my heart,’ Larner says. ‘Interestingly, as I wrote the play I got more and more angry on Allyson’s behalf at the hassle of getting to Dignitas – the exhaustion, the cost, the secrecy. Allyson would have done anything to have had her friends and family around her bedside. I don’t see why, if we have such control over every other aspect of our lives, this last taboo should hold such terror. ‘My first draft was full of polemic but as I started to rehearse it that all faded away and it became what it is: a story of a woman and how her manner of dying affected her and all of us; I let the politics speak for itself. In rehearsal my director Hannah Eidinow kept stopping me and asking, “What are we doing? This is heart-breaking stuff. Why are we putting ourselves through this?” I think it was my way of grieving, although it didn’t feel like it at the time.’ Theatre is, he believes, an ideal medium for prompting people to think about death. ‘There is something about theatre that is empathic to the human condition, much more than other art forms. At its best it encourages a hall full of people to partake in the same emotional journey as the protagonists.’ He first performed the play at the Edinburgh Festival in 2011, less than a year after Allyson died. The audiences then and since have tended to be people who either support assisted death or are facing the same issues themselves. ‘It’s not surprising when you think that the Terry Pratchett BBC documentary on assisted death got about 1,200 complaints and 70 per cent arrived before it was even aired. There’s no off button in the theatre and there are a lot of people out there who simply don’t want to discuss it,’ Larner says. Not talking about death Health professionals are, it seems, no different from lay people when it comes to avoiding the topic of death. Liz Rothschild says few came to the 2012 festival – or few who identified themselves as such – and she was advised that few would turn up if they included a death café pitched specifically for them: ‘That to me suggests that they feel they should know about these things and not need support themselves.’ Sue Brayne agrees. A psychotherapist, trainer and author of The D-Word: talking about dying, and a member of the festival planning team, her particular interest is in what happens ‘at the bedside’ of the dying person (the topic of one of the festival panel debates). She also runs workshops on loss and bereavement for therapists and counsellors. ‘Psychotherapists and counsellors are not well trained in death and dying,’ she says. ‘For many, listening to clients’ stories brings up a lot of their own experience. If you are not trained, how do you work with that and where do you talk about it? As a profession, we tend not to. But therapists are just as vulnerable as anybody else. In my workshops I offer a space for people to come together and talk about their own experiences and how to integrate them with their professional work. My experience is that they very much enjoy that. You can see the relief in the room.’ Jane Harris recalls well-meaning friends and colleagues telling her they couldn’t imagine how she, or anyone bereaved of a child, would ever be able to work as a therapist again. She disagrees. ‘Bereavement and loss are transformative experiences. They inform who you are and they inform my practice. For the bereaved parent, things are never the same again. You have to learn to live with a different reality, to present in the world in a way that is acceptable to others, but that child will always be part of you; that child is still my child. Josh’s death has led me to a much deeper level of connectedness and insight with my clients. I chose to go back to work and I hope I am a better practitioner because of these lived events.’ It hasn’t been easy: ‘I trained psychodynamically and have always been very boundaried. Making these films and sharing this information about myself has meant I have had to adapt my approach. I don’t talk about myself ever in my sessions but there is a lot of information about me out there now. I struggled a lot with that in supervision and therapy but I now think it’s not a bad thing. I feel much more comfortable in myself than I did even a year ago because for me there’s an integration of life and death in all this.’ Dying wisely Stephen Jenkinson argues that health professionals cannot cope with death because death for them is failure: ‘Success in healthcare terms is about keeping people alive.’ The word therapy derives from the Greek for cure, he points out. He has a book coming out next March in the UK – Die Wise: a manifesto for sanity and soul. ‘My worry is that what I am saying will be turned into an intervention to facilitate people going to their demise appropriately accepting or sedated and antidepressed. That would be terrible.’ Dying people are, he says, among the heaviest users of antidepressants in North America. There is a similar urge to ‘cure’ grief, particularly among therapists: ‘There is the belief that grief is something that intrudes into the natural order of things and must be contained and ameliorated. The recipe for sanity is to be impervious.’ He says fear of death is understandable in a culture dominated by death phobia: ‘Life is a loveable thing, most of the time. But that makes death more heart-breaking than fearful.’ He wants ‘to tear down the fence between living and dying so they are in the same place for us. If we are going to change how things are, we have to be willing to include dying in our understanding of health.’ It is that separation of life from death and the living from the dead that Liz Rothschild too tries to bridge when she conducts a funeral. ‘People weep, laugh, comfort each other. These things are all part of the funeral. I always make a point of touching the coffin at some point. There is a distance that grows up between the living and the dead. Touching the coffin includes them.’ Kicking the Bucket takes place in and around Oxford from 22 October to 13 November. For details, see www.kickingthebucket.co.uk or please call 01367 240508 or email info@woodlandburialwestmill.co.uk +++ The changing role of the university counselling service Clare Pointon describes the changes in her role in a university counselling service in an increasingly market-oriented, cash-strapped arena and faced with rising student demand When I first joined a university counselling service eight years ago, the work was generally shaped around a neat seven-session contract. Using an almost exclusively one-to-one relational model, I regularly worked through a beginning, a middle and an end with my clients and could usually review their needs and offer more sessions, should they need it. I always had a few students of particular concern, including those who self-harmed, and I would sometimes refer someone on for specialist or GP support. My clients were negotiating, as young people aged 18 to 25 usually are, transitions into adulthood of varying complexity. But most were able to benefit from short-term counselling for support, heightened awareness and a greater understanding about their life to date and their choices in the moment. The work had a certain rhythm to it – it was usually manageable but busy at the usual peaks of the academic year, around spring term dissertation hand-ins and final projects. Not so today. The question at assessment now is no longer primarily how many sessions we offer but whether it would be ethical for our service to engage with the person before us and, if so, how. Not having mental health advisers on our team, as some university counselling services do, we regularly refer out immediately. In this scenario, our role becomes one of ongoing case management and therapeutic holding as we support the student to access – and wait for – the NHS, long-term or specialist help they need. When we do take someone on, it may well not be classic counselling that we suggest. Nowadays my colleague on campus and I use our rare quiet days – for us, in late summer and early autumn – to plan a schedule of other offerings, such as wellbeing initiatives, self-help ideas, relaxation sessions, groups/workshops, staff trainings, management briefings and meetings with NHS and other service providers. We know that a giant wave of demand for one-to-one work will hit us by mid-November and, from then on, the challenge for our service will just be to stay afloat. Case study: Jake’s story (academic year 2013-14) ‘I found myself in really unfamiliar territory. I was losing sleep, feeling more depressed than usual and, after a particularly turbulent night where I woke up with cuts on my arms, I swallowed my pride and sought help. I went to my GP and to my course leader, both of whom said they thought I should seek counselling. I was very much against the idea initially, but I did a rough self-evaluation and asked myself if I really wanted to listen to my own opinion because I was hurting myself and depressed. ‘When I started counselling it was really a date in a calendar; it was something I had to go and do. I hadn’t imagined that having a personal crisis mixed with an existential crisis could be so chaotic. By throwing appointments at me over the past year – the doctors, my course leader and the counsellor – whether or not they were aware of it, they were building a structure that I had to follow. That’s what I got out of it at first because at first I wasn’t interested in opening up or in a vivisection of my own psyche. I just liked the fact that the days weren’t running together. I had to have a calendar and I relearned order. ‘At that lowest point in my mental state, I was just relying on other people telling me what to do. So it was really important to have counselling because I needed to return to a sense of autonomy. And that’s exactly what counselling gave me back. It was crucial for me to have counselling exactly when I had it, because of the risk factor for me and because of the fact that I felt a level of autonomy had slipped away. I was craving being ordered around because either I felt like I’d lost control of my life or I simply didn’t want responsibility for it.’ Rising tide of demand These are changing times. In a climate of financial upheaval and spending cuts at UK universities and HE institutions, BACP cites a 2013 survey by the Heads of University Counselling Services (HUCS) which says the number of HE students seeking counselling from their educational establishment rose 16 per cent between 2010 and 2013. In the same period, there was an 85 per cent increase in those seeking online counselling, as services began diversifying what they offered. Average waiting times for first appointments went up to between five days and three weeks, while the number of sessions offered by the majority of HE counselling services remained on average four to five. Ruth Caleb, Head of Counselling at Brunel University and Chair of the Mental Health and Wellbeing in HE Working Group, says the CORE outcome measures used by many counselling services show that students are presenting with a higher incidence of complex mental and emotional issues, as well as self-harm and risk. ‘Jake’ (above) – whom I saw for seven months in his final year to support him to complete his degree – is typical of these students presenting at high-risk of or with severe mental health difficulties. BACP has not collated robust statistics on severity or suicide risk, but Patti Wallace, its Lead Advisor for University and College Counselling, says it’s clear that more students are now coming to university with pre-existing mental health issues: ‘There is more complexity of need, greater risk and counsellors are having to handle more difficult situations across the board. They are doing this with fewer resources and that puts pressure on the counselling service. Ultimately my concern is that there are services where students aren’t being seen as quickly as they have been in the past. If that happens, it would be a real loss because the timeliness of a service is really important for students.’ She argues that speed of response is particularly important with this client group. Students, because of their age, are less likely than older adults to have faced similar problems in their lives and to have evolved the necessary coping strategies. They are also negotiating the stresses of what she calls a ‘time-sensitive environment’, in which missing deadlines or failing exams can have a significant impact on their life at university and, potentially, their future. So how, when and why did university counselling services get so stretched and demand from students increase? Clearly there has been a rise in the number of young people with mental health issues in the general population in recent years. But there is also increasing realisation of the psychological vulnerability of HE students, voiced by the Royal College of Psychiatrists in its 2011 report, The Mental Health of Students in Higher Education. Developmentally, the report pointed out, HE students are already coping with transition – leaving home for the first time, looking after themselves, joining new peer groups and taking on academic demands. They are living in an environment where there is often pressure to misuse drugs and alcohol, at an age (mostly 18 to 25) that is also statistically the peak period of onset for severe and enduring mental health issues like schizophrenia or bipolar disorder. Added to this, it said, is a harsh national economic climate, with increasingly uncertain job prospects and where students often have to earn money while they study, sometimes leaving them less time than they need to meet their deadlines. Also the more democratic policy of widening access to university for students from different backgrounds and profiles means that, while a greater percentage of the population now undertakes HE, the newly expanding student groups – for example, the financially lucrative and growing cohort of international students – bring specific needs for which institutions may not previously have made significant provision. Then, in September 2012, the Government introduced significant cuts to HE funding. In a radical shake-up of the fee structure, instead of a block grant from government to cover their costs, universities and colleges were now required to generate funds to cover half their budgets themselves, from fees charged to the students they recruited. The drive for some HE institutions to recruit became intense. Many staff across the sector felt less secure as, in an attempt to cope in the new climate, jobs were cut and departments reviewed, reorganised and merged. For students, it was a whole new era – they now had to pay £9,000 a year for their studies and faced the prospect of graduating with an average personal debt of £27,000. ‘The £9,000 is a huge debt on their shoulders,’ says Ruth Caleb. ‘On top of this they have to pay for their food, their rent, their books and their lives so, in order to cope, many students are now working a number of hours that are impinging on their course. They’re finding that they’re getting behind or they haven’t got the time to do their assignments properly. It’s a major problem for many of them.’ A shared responsibility Charlotte Halvorsen, Head of Student Counselling and Mental Health at City University, agrees. Students are not only taking out loans and working more to make ends meet during their studies; as a result, she says, they feel under greater pressure to get a good degree in order to find a well enough paid job at the end of it. They may even at some level assume they are entitled to a degree, whatever their academic outcome, because they’ve paid so much for it. And, when pressures and problems do hit during their studies, they feel less able to take the time out that they might need or even to consider leaving if their course or the HE path is not right for them. In a 2012 survey, BACP found that 81 per cent of students who responded felt counselling had helped them stay at university or college.1 However, alongside the general push to recruit and retain students, Charlotte Halvorsen says there needs to be a level of understanding in institutional leadership that ‘sometimes we encounter a student who is failing in the system and the best outcome may be to support their exit sooner rather than later’. As institutions recruit more students who are themselves under greater pressure and of whom more declare extra needs, she calls for more ‘joined-up thinking’ between different departments. Academic departments have a duty to support the students they recruit – not just to hand them over to the counselling service. ‘There should be more consideration given to and consultation with the students recruited,’ she says. ‘Students who declare any special needs prior to arrival should be assured that their academic department is aware and appropriate support has been put in place.’ In the current climate she believes some institutions are compromising on investment in the necessary support structures in order to survive. ‘It’s almost turning into a customer-driven service, a private sector business,’ she says. ‘The business need is to maximise student fees and that’s done by collating numbers rather than by appreciating individuals’ needs for support.’ Ruth Caleb shares her concerns: ‘Counselling services are not the owners of responsibility for mental health in an institution,’ she says. ‘That has to be owned by everybody, from the vice chancellor down, including academic schools and departments. It is up to the university to offer the appropriate form of support for its students, so if you expand the number of overseas students, for example, you need to be aware that those students will have particular stresses… they may be doing their study in their second, third or fourth language, they may be leaving family behind, they may be struggling financially, they may know no one in this country and they may experience culture shock.’ Likewise, she argues, students recruited into HE from, for example, BTEC courses that offer more course work assessments, one-to-one support and less exam-based work, may need more practical help with the transition. 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