Open Mind issue 167 July - August

Finding a voice Creativity and madness

‘Ria Pratt – Shocking Pink II’ by Kim Noble

WHAT'S NEW

FEATURES

• Person-centred support

• The madness of artists

• Employment support review

• Creative working in mental health

• New research on bipolar disorder

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• Art and DID

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feature

Creative ways of working in mental health Incorporating creativity into mental health practice can be therapeutic both for mental health service users and providers.

Ian A McMillan

A

walk along the trafficclogged Walworth Road in the heart of south London is unlikely to feature in a glossy book portraying popular rambling trails in Britain’s beauty spots. But, once a month, people who support or attend a local arts organisation take part in consciousness-raising walks along the Walworth Road and surrounding streets, often taking in artistic landmarks such as Tate Modern.

Largactyl Shuffle Organised by CoolTan Arts, a Camberwell-based mental health

and arts charity, the walks have the unlikely name of ‘Largactyl Shuffle’.

The title, explains development manager Susan McNally, was originally dreamt up by a participant (a term the charity prefers to ‘service users’) to highlight the unfortunate side effects of a widely used antipsychotic drug.1 McNally describes Largactyl Shuffle as CoolTan’s flagship event, noting that the aim is to “destigmatise mental health issues, promote physical activity and introduce creativity, humour and history along the way.”

Each walk has a special theme,

There is a growing acknowledgment of the evidence base for using creative arts in mental health. For example, NICE guidelines for schizophrenia emphasise the value of creative arts therapies. such as the Summer Solstice Midnight Walk, which takes place on 18 June, while a special walk is held annually in October to celebrate World Mental Health Day.

The CoolTan way

Photo © Kathrin Kirrmann

Launched in 1990 in Brixton, CoolTan Arts’ workshops were initially aimed at women who had experienced mental health problems, assault and trauma. Each week around 130 people of both genders currently attend classes run by professional artists covering topics such as batik, sculpture, drawing, video editing and filming.

One long-standing supporter of CoolTan’s objectives is South London and Maudsley NHS Foundation Trust. A Trust

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Photo © Nordoff Robbins

creative ways of working in mental health

Music therapy Gary Ansdell is a practising music therapist and director of education with Nordoff Robbins, an organisation that describes itself as a “music charity dedicated to transforming the lives of vulnerable children and adults.”

It delivers more than 45,000 music therapy sessions a year, through music therapists employed by the NHS working on inpatient wards and in community settings with people who are finding their feet again.

Sarah Wilson works three days a week for the NHS at South Kensington and Chelsea Mental Health Centre. With Ansdell, Wilson runs the award-winning Chelsea Community Music Therapy Project, while also holding open musicmaking sessions for groups. She also supports a band and a singing group, both of which rehearse weekly and perform in local venues.

While stressing that music therapy “really goes back to the beginning of time,” Ansdell notes that music therapy as a profession began around 50 years ago. “We are all musical and everyone is able to participate in music, if it is facilitated in the right way. Through music therapy people find they are very talented and that their musicality shines through. This encourages them to find confidence in their lives and be more social again.”

A participant of the Project said: “Music triggered a healing process from within me… I started singing for the joy of singing myself … and it helped me carry my recovery beyond the state I was in before I fell ill nine years ago … to a level of wellbeing that I haven’t had perhaps for 30 years.”

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spokesperson praised the ‘fantastic work’ undertaken by the charity, and said it played a crucial role in raising awareness and understanding of mental health issues.

Like many other mental health organisations, CoolTan Arts is having to rejig its plans after funding cuts kicked in last April.

Operations director Jenny Irish said the development of the personalisation agenda meant participants could use their personal budgets to pay their fees to join therapeutic workshops in the future. Two hour courses can cost between £36 to £46 and services can be directly commissioned by outside providers with the organisation delivering quality services at competitive prices.

“These cuts in funding are obviously proving challenging in the current economic climate when we are facing a rise in demand for our services from participants across London,” Irish added.

The meaning of creativity Tony Gillam, who qualified in mental health nursing in the 1980s, is convinced that creative activities can help to break down barriers between professionals and service users. But he has reservations about how the word ‘creativity’ is often used in today’s NHS. Gillam, clinical manager with the Worcestershire Early Intervention Service, explains: “The term ‘creativity’ is bandied about a lot in healthcare. Often it is used as a kind of shorthand for ‘new ways of working’ as if it is about efficiency and part of a rather reductionist way of managing resources.

But creativity in mental health is much more than that: it ought to be a breath of fresh air, something reinvigorating for both service users and service providers. There is a strong link between creativity and mental health and I believe by becoming aware of this link and reinforcing it we can improve mental health for all.”

Gillam, a musician and writer in his spare time, says he would feel hypocritical if he did not try to integrate creativity into his work in mental health. “Over the years, I have been involved in several groups and projects using improvisational music-making and creative writing. This has been very rewarding for me and with a significant evidence-base for using both music and creative writing in mental health, I am convinced these have been worthwhile interventions which can enrich the lives of service users.”

Creativity in practice Is it getting harder for mental health professionals to be creative? Yes and no, according to Gillam. “There is a growing acknowledgment of the evidence-base for using creative arts in mental health. For example, the National Institute for Health and Clinical Excellence guidelines for schizophrenia emphasise the value of creative arts therapies.

“But the culture of healthcare has become increasingly bureaucratic and mechanistic in a way that doesn’t promote creativity. While the rhetoric claims to encourage ‘innovative ways of working’, the reality of micromanagement and increasingly defensive practice could stifle creativity.

“That said, creativity could be the antidote to this problem and I am keen to encourage truly creative approaches to mental health care. It should be remembered that this does not necessarily mean using creative arts but can be about just being more creative in our day to day interactions with service users, carers and colleagues.”

1 Largactil (chlorpromazine) was invented in the 1950s to treat psychosis. A shuffling gait is associated with the drug. The misspelling of the drug in Largactyl Shuffle is deliberate.

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feature

Art and dissociative identity disorder Creativity can help in rediscovering a self and identity threatened by extreme trauma and abuse.

Julian Turner

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eople who receive the diagnosis of dissociative identity disorder (DID) tend to have survived early, and often extreme, traumatic events. These events may lead to the mind taking evasive action when it finds itself unable to protect the person.

Dissociative symptoms can be one result of this. We have underestimated the extent of early trauma partly because we have found it terrifying to acknowledge that children’s early experience can be so awful and this has led to suspicion of survivor accounts that in turn casts doubt on the validity of their experiences.

Integrating parts of the self

‘Judy – crying rose’ by Kim Noble

People with DID are often highly gifted and creative, which may be partly due to demands made on them at an early age. Although the main ‘treatment’ for the condition remains psychotherapy, creativity can also play a considerable role in an individual’s recovery.

Kim Noble is a good example.

In and out of hospital from the age of 14, she was encouraged by her therapist to try art therapy sessions with a trainee art therapist. Despite her initial response of “I can’t paint” she was encouraged to try. Once she got the hang of it, she started to use it as a way that parts of the self could communicate with each

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Art and Dissociative identity disorder

‘Judy – Playground’ by Kim Noble

other. She says “We left notes for each other in the art room. I developed a lot more knowledge about the other parts”.

Slowly, over time, she developed her work as an artist. 13 of her parts became painters, each with their own particular style of painting. At first, the variety of style that this entailed was a drawback. She was told by galleries to “come back when your style has settled”, which in the circumstances was not likely to happen. She persisted however, and her work has achieved international recognition. She appeared on the Oprah Winfrey show in 2010 and has been exhibited as different artists under the name of Kim Noble.

“It’s definitely made us happier.

I can say that the 13 of us are at least on the same path. Before we had our art, we were all over the place, all wanting different things.

Now I know where we are likely to be. When I miss time, I know if we have been in the painting room.

When we were exhibited together, it felt the nearest thing to integration I have felt”.

communication between parts too.

She also thinks it helps process feelings that can otherwise distort recovery: “Art helped me work through revenge fantasies and this can be crucial in helping you move to the next phase of recovery. I found that expressing my need for revenge through art helped me see it was somewhere I did not want to go, that my recovery was separate from what happens to the perpetrators.”

Jacqui also suggests that the symbolic and metaphoric nature of art can help people reclaim important areas of their lives: “Enjoying going dancing comes directly from painting and drawing for me. I do both because they feel good and they are fun.”

Processing feelings Others agree. Jess Morgan, who also has DID, says: “I always felt better after I’d been drawing. Even when I did not draw how I felt, I got a sense of relief from drawing. Drawing helped us understand what was going on inside. I find art useful when I can’t write or say how I feel. If I can express myself, I am less likely to need to self harm.

Making something beautiful when things seem really awful can be a life-saver.

“Art is a resource; it can give you confidence that there are things you can do for yourself, you don’t always have to rely on other people.

It can also help you get out of situations when you feel overwhelmed. It’s a safe way to express how you feel and it is something you can do almost anywhere.”

Jacqui Dillon, chair of the Hearing Voices Network, thinks art can help

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Discovering self and identity

1 van der Kolk, BA (1994) ‘The body keeps the score: memory and the evolving psychobiology of posttraumatic stress’, Harward Review of Psychiatry, 1.5: 253–65 2 Winnicott, DW (1980) Playing and reality. Penguin

So, why does art make these things possible for people who dissociate?

There are a number of points to be made: • Where you have very young parts, for whom language is a problem, art may enable them to express their feelings directly.

• Making something that you can see is beautiful can be a way to feel more able to influence things and so to exert power over your life. This can improve your sense of being in control.

• Artwork makes use of the right hemisphere of the brain.

Traumatic memories are stored as sensorimotor and perceptual data in the right hemisphere and art may help you access this data.1 • Art can help to build self-confidence as you see you can regularly produce appreciated and attractive creations.

• The exercise of creativity can give access to whole areas of life people otherwise might be excluded from.

• Finally, creativity is a vital part of life. DW Winnicott located the importance of art in the play of children. He thought play was a key compone nt of maturation and identity formation: “It is only in being creative that the individual discovers the self.”2 Perhaps, for people who have DID, who experience a number of self-states, it is all the more important to “discover the self through creativity”, and we should encourage art as play to support the process of identity where this has been threatened by extreme trauma and abuse.

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on the agenda

Person-centred support The way forward or an enduring contradiction?

Fundamental cultural changes in mental health services are necessary if service users are to have real choice, control and person-centred support.

Peter Beresford

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ersonalisation has become the big policy idea for health and social care.

This has massive, as yet unrealised, implications for mental health services. The government says it is about much more than providing people with the option of a personal budget – a cash sum of money in actual (direct payment) or notional form to buy the package of support they want. They stress it should mean increased choice and control more generally for service users. However, so far the discussions have largely been framed in terms of increasing the number of people on personal budgets.

A hesitant start As yet, the relationship between mental health services and personalisation has been a complex and hesitant one. While mental health service users seem to value having the chance to choose what kind of support they can have (which direct payments can make possible), in fact they have been less likely to access personal budgets in the social care system. Now that the idea of personal budgets is being trialled in the NHS, especially big issues are raised for mental health

service users as it could offer them a route out of traditional mental health services. However, particular restrictions seem to apply both to mental health service users’ access to personal health budgets and what they are able to purchase with them, largely, it seems, because of traditional assumptions about such service users’ unreliability and irrationality.

In mental health, as in the rest of health and social care policy, we would be wise to keep our focus, as the government advises, on personalisation more broadly rather than restrict it to personal budgets and direct payments. These are just a delivery system and, as we are already beginning to see, fraught with many problems of their own, as financial ceilings are reduced and eligibility criteria narrowed. They certainly do not automatically ensure increased choice and control for service users, as some are already finding.

Limitations in the system Personalisation can be expected to have particularly big implications for mental health services because of their inherent limitations. Here is a system which is still essentially

Making the move from a diagnosis-based system to one resting on a personalised or 'personcentred' approach is likely to demand first order change to the traditional understandings of the mental health system. based on a medical model and where what services people get is largely dictated by the diagnostic category they are placed in. Making the move from such a diagnosisbased system to one resting on a personalised or ‘person-centred’ approach is likely to demand first order change to the traditional understandings of the mental health system. This becomes especially clear when we move from expert understandings of personalisation, to hear what service users, carers and face-to-face practitioners have to say about it.

This was the focus of the four year Joseph Rowntree supported ‘Standards We Expect’ project.

This was a user-led research and

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person-centred support

Continuing barriers They saw person-centred support as seeing people as individuals and organising services and support around them, and not the other way around: “treating people how you would want to be treated” so that “the power is with the person, not the organisation.”

Sadly, the study showed that the routine experience of many service users was often very different. In all services, including mental health, examples were routinely encountered of service users being denied their human rights and not having their needs met. Equally, even in times of cuts and difficulty, some services and practitioners emerged as working hard to overcome the kind of barriers that are still commonly encountered. These barriers included people being institutionalised in residential settings, feeling disempowered and isolated at home, often lacking transport, not allowed to do things for themselves, kept in poverty, dependent on family carers, constantly being ‘risk-assessed’ in risk averse settings, with service users and carers from black and minority ethnic communities having inferior access to good quality support.

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Photo © Jayasree Kalathil

development initiative which aimed to find out what person-centred support (its preferred term for personalisation) meant to key stakeholders directly affected by it, what barriers they saw in its way and how these could be overcome.

Many different service users, including those in hospitals and under section, and kinds of services were involved in this project and many different lessons could be learned from them. Interestingly, there was an enormous amount of agreement about the issues we focused on among different groups of service users, face-to-face practitioners and carers.

Fundamental changes needed The biggest barriers to person-centred support which people reported – inadequate funding and an inappropriate service culture – are writ especially large in mental health services. The current political stress on public deficit means that funding problems are likely to get worse before they get better. But what this study evidences even further is that unless fundamental system changes take place in the culture of mental health services, moving them on from an essentially nineteenth century medical model approach to a social model fit for the twenty first century, there is likely to be little substantial progress for a person-centred approach in this neglected sector of health and social care.

Already the ‘recovery’ model has been subverted into an extension of medicalised thinking and there is little evidence so far that the introduction of personal budgets is escaping the iron grip of diagnosisbased thinking. Yet, ultimately, that is the direction we will have to go in if we are to be true to service users’ understandings of personalisation; that it must really mean a value-based approach that puts the person at the centre rather than fitting them into services, treats them as individuals, listens to and acts on what they say, gives priority to an equal relationship between service

user and worker, and is based on a positive approach “which highlights what mental health service users/survivors are able to do, not what they cannot do.”

Focus on service user voices While personal budgets may currently offer some service users a means of buying support and services outside of the mental health system, thereby escaping its stigmatizing and isolating effects, this does not represent a meaningful solution. That is only likely to come through the fundamental reform of the psychiatric system based on the criteria for person-centred support identified by the key stakeholders who were able to develop their views in the Standards We Expect project.

What is now needed is an urgent move to listen to them and act on what they say. We have already had too many ‘expert’ accounts of personalization. It is now time for the voices of service users/survivors to be given priority.

Resources • Standards we expect project: http://www.jrf.org.uk/sites/files/jrf/ social-care-personal-support-summary.pdf • Beresford, P et al (2011) Supporting people: towards a person-centred approach. Policy Press

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