Tony Devaney – Managing long term health conditions: Spiritual awareness and creative practice

Following a traumatic car accident in 2001, and subsequent attempts to recover, I suffered severely disabling illness in 2004, with rapid onset Rheumatoid arthritis and Fibromyalgia.

There have been times since 2004, when I have experienced profound depression and frustration at the lack of adequate care and support available. But through mindfulness and a sense of spiritual connection I have always known myself to be more than my illness.

As a creative writer I have continued when possible to write poetry and articles addressing immediate topical issues and commenting on wider health and social concerns.

In October 2009, I listened to a radio programme called ‘Metaphor for Healing’, (Radio 4), presented by Doctor Phil Hammond, exploring narrative based approaches to primary care. His comment at the end of the broadcast, that there should be ‘room for a little poetry in healthcare,’ echoed my own growing conviction that I had something of real and enduring value to contribute in this area, through my own personal narrative and poetry.

In 2010, I became a member of SureSearch, an organisation for mental health service users and their allies who wish to become involved in health research, education and training. During recent years I have established a wider role for myself as a service user researcher/consultant and narrative practitioner.

Since 2011, I have been involved with developing ‘Recovery focused’ services in Health and Care Worcester NHS Trust. I co-edited and presented the Trust’s Recovery Vision and Pledge document to the Board of Directors and was involved with designing and developing the HACW Recovery website and the Recovery Newsletter. I also edit the Newsletter. Some of my articles, including ‘Why I Still Have Hope – Illness and Spiritual Growth,’ ‘Reflections on Health and Care’ and ‘Creative Ageing in a Consumer Society,’ have been published on the Recovery website and in the Recovery Newsletter.¹

I am currently involved as a service user consultant and project team member, with an AHRC large grant funded Research programme entitled, ’Creative Practice as Mutual Recovery – Connecting Communities for Mental Health and Well-being.’ ^{2, 3}                                                

Many of my poems and articles, including, ‘Recovery, Resilience and Wellbeing,’ (HACW Recovery Newsletter, winter 2013), contain similar insights to those expressed in the BBC News Blog of Vidyamala Burch’s story (see below) – and also in the quotes from the BBC news article and broadcast by the political philosopher John Gray, which follow it.

‘Vidyamala Burch lives with chronic pain having acquired two spinal injuries at an early age. At the age of 25 she experienced a major physical breakdown. While in intensive care she was introduced to meditation by a hospital chaplain. During a lengthy period of rehabilitation she tried different relaxation techniques and eventually found that one, called Mindful Meditation, worked well for her.

In 2000, now ordained as a Buddhist, Vidyamala Burch started a social enterprise called Breathworks, where people with chronic pain take an eight-week course to learn how mindfulness could help them cope better with their physical symptoms. The programme has been taught to thousands of participants, in over 20 countries. Burch is now a leader in this area and her company also trains practitioners. She sits on an all-party parliamentary group to incorporate mindfulness meditation into the NHS.’ ⁴                   

                                         

In my own articles, ‘Why I Still Have Hope – Illness and Spiritual Growth,’ and ‘Recovery, Resilience and Wellbeing, mentioned above, I have stressed the need for recognition and acceptance of a wider spiritual purpose and social contribution in life for some people with long term health conditions. This goes beyond a total emphasis on immediate social function and economic considerations alone.

The following extracts are from the BBC programme, ‘A Point of View,’ by John Gray, political philosopher and author of ‘False Dawn: The Delusions of Global Capitalism.’

‘Belief in the supreme importance of being active is so embedded that we can hardly imagine any other way of living. Yet our exclusive concern with purposeful action crowds out a vital part of human fulfilment…. When we set aside our practical goals – if only for a moment – we may discover a wealth of meaning in our lives, which is independent of our success or failure in achieving our goals. Struggling to change things around us, we forget that another kind of change is possible – an inner change, through which we can enter a richer and more spacious world that was there all along.’ ⁵

Participation in Arts and health initiatives, including creative writing and reading for wellbeing, can change the way we view the world and may help to turn adversity and traumatic experience into an opportunity for creative growth.

Tony Devaney (mail@anthony02.plus.com)
Service User Consultant
Fellow of The Institute of Mental Health

For more information, see:

http://thehearthcentre.org uk/

www.creativitypost.com/psychology/turning_adversity_into_creative_growth

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References

(1) See: www.hacw.nhs.uk/our-services/big-recovery/creative-reflections/

(2) See also details of local research project at: www.wlv.ac.uk/connectedcommunities

(3) www.healthhumanities.org/pages/view/creative-practice-mutual-recovery/

(4) www.bbc.co.uk/news/blogs-ouch-30534749?print=true

(5) ‘A Point of View, The Doors of Perception’ www.bbc.co.uk/news/magazine-22648328

David Kelly – Origins of the misrepresentation of the term ‘schizophrenia’ in the general media

Like my colleague, Jo Higman, I recently completed an M.A. in Health Communication at the University of Nottingham. Many thanks to the support from Nottinghamshire Healthcare NHS Foundation Trust, the Clinical Research Network: East Midlands, and Learning Beyond Registration (LBR) funding.

The topic I chose for my dissertation was to closely examine the mechanisms by which the term ‘schizophrenia’ is frequently misrepresented in UK national newspapers. I will be sharing the main findings from my dissertation at a later point. However, for this short post I would like to restrict myself to making the suggestion that whilst journalists do bear a large responsibility for the grossly biased, negative picture of people diagnosed with schizophrenia that appears in the general media, they are not solely to blame for this situation.

The word ‘schizophrenia’ comes from the Greek words ‘schizein’ meaning ‘to split’ and ‘phren’ or ‘mind’. It can therefore be translated as “splitting of the mind”. It was first used by the Swiss psychiatrist, Eugen Bleuler in 1908. His intention in using it was not to suggest that people can experiences a ‘split personality’, but rather to describe the separation of function that occurs in the condition between personality, thinking, memory, and perception that can occur in some people. This condition had previously been referred to by a German psychiatrist, Emil Kraepelin, as ‘dementia praecox.’ Bleuler thought that this term was misleading because of the implied emphasis on the inevitable gradual degeneration and decline of people with this condition. Therefore he coined his own word to describe the patients he saw in his clinical practice.

However, right from the very outset Bleuler’s chosen word for this mental health condition caused confusion. McNally (2007) points out that nowadays normal everyday usage of schizophrenia does indeed equate schizophrenia with meaning someone with a ‘split’ personality or behaving like a ‘Jekyll and Hyde’. This is not a recent phenomenon but dates right back to when the word was first utilised. Indeed Bleuler himself sometimes records examples of his own clinical observations of patients ‘splitting’ their personalities. This leads McNally to boldly assert that ‘there can be no mistaking that the responsibility for the schizophrenia as split personality myth, and everyone else’s subsequent usage, lie with Bleuler.’ (McNally 2007: 71). Kieran McNally also provides later examples of American psychologists in the 1920’s referring to schizophrenia as meaning ‘split souls’ or ‘divided minds’. The subsequent adoption by journalists of these notions of splitting can therefore be seen to have their roots in ideas first expressed in the writings of clinicians themselves. This would suggest that the current everyday misusage of the term schizophrenia in the general media is partially a product of the clinical professions themselves. Journalists then quickly picked up on these ideas and spread them throughout the general population.

Subsequently the term ‘schizophrenia’ has become frequently used as a metaphor within wider society – far beyond its original meaning as a specific clinical diagnosis. As well as being associated with split or multiple personalities its everyday use has now been expanded to include being used as a description of changeable, chaotic situations or people. For instance, the headline in a news report by the BBC reads ‘MPs warn of ‘schizophrenia’ over climate change targets’. (BBC, 11th October 2011). However a more worrying association with schizophrenia and mental health in general, is that it is now become strongly linked in public consciousness with violent behaviour. Another BBC report, this time entitled ‘Asda and Tesco withdraw Halloween patient outfits’ illustrates how large UK companies attempted to sell ‘mental patient’ Halloween costumes that included ‘ragged clothing, fake blood, a mask and a fake meat cleaver’ (BBC, 26th September 2013). The rapid public outcry led by quick responses from mental health charities made the retailers withdraw the items from sale and issue hasty apologies. However, this recent story illustrates the perception in some parts of society that the link between mental and violence is so obvious the ‘mad axe man’ has now become a widely recognisable stereotype.

Susan Sontag (1991) is the writer who has now become most commonly associated with discussions about the metaphorical usage of illness. Her ground-breaking book ‘Illness as metaphor’ was originally published in 1978 and looked at the history of both tuberculosis and cancer. She argued that the myths and the metaphors that built up around these illnesses over time increased the suffering of patients and inhibited them from seeking treatment. Indeed the persons themselves were often seen to be at fault in some way for contracting their illnesses.

Similarly it could be argued that because schizophrenia still has a still largely unknown aetiology, it lends itself quite readily to metaphorical usage – and so is still culturally surrounded by a discourse of fear, stigma and despair.

A discourse can be defined as ‘a set of meanings, metaphors, representations, images, stories and so on that in some way together produce a particular version of events’ (Burr 1995: 48). Baker (2006) says that an important aspect of discourses is that they are not fixed. Indeed discourses are ‘constantly changing, interacting with each other, breaking off and merging’ (4). For a potentially contentious concept such as schizophrenia there is no fixed consensus of opinion. As with any discourse ‘there are likely to be multiple ways of constructing it’ (Baker 2006: 4). There is also the possibility of multiple discourses co-existing side by side. These include the viewpoints of the clinicians who diagnose the illness, the people who have the diagnosis placed upon them, their families and carers, politicians, media outlets and finally the general public.

Some groupings in society have greater access to the necessary social, economic and political power needed to influence which discourses are preferred over others. These groups include the medical profession, but also general media outlets such as newspapers and television programmes. Given that a large number of people in society gain most of their information about mental health conditions such as schizophrenia from what they view on television and read in newspapers and magazines (Pirkis, Francis, 2012), this makes it extremely important issue for those people currently diagnosed with schizophrenia and for their families and carers. The representation of schizophrenia in the general media also has a significant role to play in how the illness is perceived by politicians who ultimately decide on government health policies.

Perhaps now is the time to consign the term ‘schizophrenia’ to the history books and so help bring to an end the misconceptions and neo-gothic stereotypes that have dogged the term from its very inception.

David Kelly (David.Kelly@nottshc.nhs.uk)

Clinical Studies Officer – NIHR Clinical Research Network: East Midlands

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References
Baker, P (2006) Using Corpora in Discourse Analysis. London: Continuum

BBC (2011) MPs warn of ‘schizophrenia’ over climate change targets. (11 October 2011) http://www.bbc.co.uk/news/uk-politics-15249089 (Last accessed 28/07/2015)

BBC (2013) Asda and Tesco withdraw Halloween patient outfits (26 September 2013). http://www.bbc.co.uk/news/uk-24278768 (Last accessed 28/07/2015)

Burr, V (1995) An Introduction to Social Constructionism. London: Routledge

McNally, K. (2007) Schizophrenia as split personality/Jekyll and Hyde: The origins of the informal usage in the English language. Journal of the History of the Behavioural Sciences 43(1), 69-79

Pirkis, J., Francis, C. (2012) Mental illness in the news and information media: A critical review. Commonwealth Department of Health and Aged Care. Canberra

Sontag, S. (1991) Illness as a metaphor / AIDS and its Metaphors. Harmondsworth: Penquin.

Reaching Out and Saving Lives – World Suicide Prevention Day

Each year, September 10^th marks World Suicide Prevention Day. The theme this year, ‘Reaching Out and Saving Lives’, highlights not only the role that support and social ties play in combating suicide, but also the role that each of us has in saving lives.

Below is a piece from the International Association for Suicide Prevention, organisers of World Suicide Prevention Day, discussing just some of the guises that reaching out may take.

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Reaching out to those at risk of suicide

According to the recently released World Health Organization (WHO) report: Preventing Suicide: A Global Imperative, over 800,000 people die by suicide across the world each year. The report notes that this estimate is conservative, with the real figure likely to be higher because of the stigma associated with suicide, lack of reliable death recording procedures, and religious or legal sanctions against suicide in some countries.

We may not be able to pinpoint the exact figure, but we do know that each individual suicide is a tragic loss of life. It is hard to imagine the extreme psychological pain that leads someone to decide that suicide is the only course of action. Reaching out to someone who is struggling can make a difference.

‘Preventing Suicide: Reaching Out and Saving Lives’ is the theme of the 2015 World Suicide Prevention Day (WSPD), an initiative of the International Association for Suicide Prevention (IASP) and the WHO, a co-sponsor of meetings and events related to WSPD 2015. Since 2003, WSPD has taken place on 10th September each year. It serves as a call to action to individuals and organizations to prevent suicide. This year, the theme encourages us all to consider the role that offering support may play in combating suicide.

The act of showing care and concern to someone who may be vulnerable to suicide can be a game-changer. Asking them whether they are OK, listening to what they have to say in a non-judgmental way, and letting them know you care, can all have a significant impact. Isolation increases the risk of suicide, and, conversely, having strong social connections is protective against it, so being there for someone who has become disconnected can be life-saving.

Reaching out to those who have been bereaved by suicide

Suicide is devastating for families, friends and community members who are left behind. They may experience a whole range of emotions, including grief, anger, guilt, disbelief and self-blame.They may not feel that they can share these overwhelming feelings with anyone else. Therefore, reaching out to those who have lost someone to suicide is very important.

As a result of the stigma surrounding suicide, those who are bereaved by suicide are often perceived differently from those who lose a family member through another cause of death. People who are bereaved may find that they are avoided by people who don’t know how to broach the subject or offer their condolences. Or they may just feel that others do not understand the intensity of their emotional response to the death of their loved one.

Once again, a pro-active approach and offering a sympathetic, non-judgmental ear can make all the difference. Giving someone who has been bereaved by suicide the opportunity to talk about their loss, in their own time, on their own terms, can be a precious gift. Allowing them to express their full range of feelings can be cathartic, and can help them to take the first small step in moving through their grief. Starting the conversation may be difficult, but it will almost certainly be appreciated.

Reaching out to put people in touch with relevant services

Although the support of friends and relatives is crucial for people who may be at risk of suicide and for people who have lost someone to suicide, it is not always enough. Often more formal help is also needed. Such help can take many forms, and is likely to vary from country to country. In high-income countries, it may include specialist mental health services and primary care providers, both of which offer clinical care. It may also include a range of community organisations which provide non-clinical support, as well as support groups and self-help groups. In low- and middle-income countries, the more clinically-focused services are less readily available, and there is a heavier reliance on community organizations. Part of reaching out to vulnerable individuals can involve helping to link them to relevant services.

Reaching out to the suicide prevention community

There is strength in numbers. Around the globe, many individuals and organizations are involved in efforts to prevent suicide. We can learn from each other, and strengthen the evidence base for effective interventions. Reaching out to those who are travelling the same road increases the likelihood that our collective efforts to reduce the numbers of people who die by suicide, and the numbers of people for whom these deaths have shattering effects, will be successful.

Reaching out on World Suicide Prevention Day

On September 10th, join with others around the world who are working towards the common goal of preventing suicide. Check in on someone you may be concerned about, listen to what they say, how they say it and show them kindness and support. Investigate ways of linking in with others who are trying to prevent suicide in your community, your country, or internationally. Show your support by organising or taking part in a WSPD activity in your area and/or join in with IASP’s Cycle Around the Globe.

Please, reach out and save lives.

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If you need someone to talk to, Samaritans are available round-the-clock, on 08457 90 90 90 (UK)