Edited by Mark Hardcastle, David Kennard, Sheila Grandison and Leonard Fagin.
Published For ISPS: Routledge, 27 Church Road, Hove, East Sussex BN3 2FA
This book speaks from a humanist perspective. It grapples with the range and complexity of how people who are seriously unwell, disordered or distressed, experience mental health in-patient provision. As some-one who has lived experience of Psychosis and in-patient care, I found many observations to be painfully true.
Each chapter challenges our thinking with well thought out questions that remove any rose coloured spectacles about provision. People speak from many viewpoints, as patients, nurses, psychiatrists and supporters; all reach largely the same conclusions. We don’t have our provision right; Mental Health Services retain established procedures, techniques and rules, which are set up in some ways to act as a protection from the onslaught of pain that people in mental distress are experiencing. But these procedures and organisational structures also act to retain a ‘them and us’ culture.
I recall as an in-patient in 2005, I was encouraged to create a painting, by a staff member who recognised my artistic abilities. I called it ‘We are all in the same boat’ after the poem by G.K. Chesterton ‘We are all in the same boat in a stormy sea and owe each other a terrible loyalty’. While my hospital care was generally good, I heard a nurse say in passing, ‘Not every-one would want to see themselves in the same boat’. This to me is the crux of the dilemma around mental health in-patient care.
Mental health problems can occur to any-one, some may carry more vulnerability, but life is unpredictable and loss and pain can at times seem insurmountable. People experiencing mental illness, are often like children; they speak with an honesty that can be hard to accept. This book is essential reading; it comments on a number of different in-patient experiences. Often one feels the struggle of ideas between those staff who have become sunk in demoralisation, struggling with the burden of pain of supporting so many people experiencing mental illness and those who sincerely believe it can and will be different. It strives to be as honest about the challenges of providing safe environments and it questions how best to hold hope at times of despair.
The book is five years old, but sadly our services are yet to be transformed and provision is at best patchy. There has been a shift towards more recovery focussed thinking, but stigma and discriminatory attitudes remain. Staff at all levels, need to keep asking and people who have lived experience of mental illness and hospitalisation, need to keep speaking up and speaking out. A strong aspect of the book is that people need to talk, engage in active listening and effect changes in relationships between providers, supporters and patients. But it also draws our attention to the underlying structures that impede or improve provision. We must aim for no more ‘them and us’ if people experiencing mental illness are to be best supported to cope during a period of in-patient care. Here we see people who do care and are striving to make recovery oriented provision possible.
Coming to terms with Mental Illness
The section identifying themes throughout the book is helpful. It recognises the ‘deep personal impact’ of being told that you, or a relative, or someone you are working with, has a mental illness. It notes the mixture of relief and dread of such a diagnosis. Mostly though it sees how the person given this label, and their family, above all else, want to receive the supports and interactions that enable them to feel they still belong to the human race. Currently prejudice and processes still often leave people being seen as victims or worse.
This book is courageous because it is not afraid to go where the territory is dangerous. It notes how surprisingly difficult it is for hospital staff to provide appropriately, partly because of external factors such as hectic schedules, lack of continuity of care, emphasis on risk avoidance, and administrative responsibilities. But also it alerts us to the internal factors, the defence mechanisms that people providing support and services employ to cope. A question is posed, “Could it be that some of the staff are just not adequately equipped to deal with this level of emotional pain?” For instance, an example is quoted, that even when patients are on continuous observation, they are barely spoken to. I have experienced this ‘otherness’ from staff and it adds to one’s despair and isolation.
Valuing the Hope and Dreams of People in Distress
In his chapter, Mike Pritchard, a hospital chaplain, suggests the need to raise spiritual awareness among mental health professionals, to enable patients to feel a greater sense of worth. By the term ‘spiritual awareness’, he is stressing the person’s inner self. And we all, patients, staff, carers, have an ‘inner self’ if we can just reconnect to it.
So asking questions like:-
- What helps patients to keep their spirits up?
- What makes life feel worthwhile for them?
- What is it that gives life some meaning and purpose?
- What do individual people live for?
- What are their hopes and dreams?
These questions lie at the heart of the matter. We need to be asking the same questions for staff. In finding the answers we can better understand Recovery oriented practice. Mike Pritchard suggests it could be that, ‘simply coming alongside the patient with no motive other than to make her or him feel that she or he matters’, is not sufficiently valued ‘because it does not fit into any medical or therapeutic model’. Perhaps over the last five years, ‘being alongside the patient’ has been successfully absorbed into Recovery principles and values, but putting it into practice is still proving to be a challenge. Thankfully, we can begin to believe it has become a goal that we are now fully embracing.
Challenging Practice – Building Hope and Optimism
Other themes within the book relate to power and control. Lack of information about ward routines, rules and decision making processes can leave patients feeling more frightened, excluded and angry. Wards are constantly absorbing new people and because this is familiar to staff who are secure with protocols, they can overlook how disempowering it is to be held outside this knowledge loop. This may lie in a misunderstanding of the nature of mental illness. Even when severely ill, many people retain lucidity when given clear uncomplicated explanations. This should not be overlooked.
People identified a number of significant symbols to illustrate their experiences. One item was a bunch of keys, which represented the power imbalance. Another, the clipboard, where a person is observed and notes taken. Such things act to retain a ‘them and us’ culture.
A nurse, Keith Coupland, identified the dominance of the medical model as leading to passivity among nurses, rather than ‘action orientated advcocacy’ for the patient’s recovery. This is not the only place, in the book, where it refers to situations, where there is an implication that all involved are waiting for medication to make the person well. It is over a decade since Judi Chamberlin, mental health advocate said that we should be seeking ‘not passive recipients but active participants’. Such optimistic words require the right interventions to draw out the person into their own recovery, for we know that recovery is unlikely to happen spontaneously and medication can be complemented by heartening support.
Mark Hardcastle, nurse and recovery advocate, notes some of the tensions between Recovery values and the actual accounts of individual experience. He is struck by the difficulty of services to adopt recovery oriented practice, partly he suggests because we are encouraging people themselves to define new ways of living following acute mental illness. Mark clearly champions the recovery movement and notes its history, stemming from roots in the civil rights movement.
He notes NIMHE in 2005, urging mental health services to adopt values based principles, as a basis for action.
- Partnership of people using services and/or their supporters identifying life goals and ways of achieving them.
- Stressing the importance of inclusion.
- For professionals to be hopeful for an individual’s recovery
He also recognises the importance of befriending interventions and sees the role of support, time and recovery (STR) workers as supporting this principle.
The book notes how important it is to include patients, families and friends in clinical care planning and the importance of effective information sharing, based on an open approach, guided by the curiosity of the patient and family. ‘Patients who were put in seclusion, or chased and wrestled to the ground when they became violent or tried to escape, tell us that no-one tried to explain what would happen or discussed with them ways of defusing or dealing with violent impulses’. In my own experience I was lucky: I was told, ‘If you get upset, it will upset other people’, and so I became more cooperative. Getting the language right is also important – the word ‘compliant’ was used on my own care plan: I disliked it then, I dislike it now. This understanding of how to defuse anxiety often requires taking time to talk things through, and yet because it seems an everyday occurrence, it can be frequently overlooked.
In valuing communication, sharing and reflection, this book recognises the complexity of mental illness and getting supportive provision right. It notes the temptation for ward staff when having difficult moments to, retreat to the office, interrupt a clinical interview, give medication, feel warned off from talking to patients and to feel undervalued by management. Again the discourse notes that the most powerful antidote to such negative experiences is to make time to talk about these stresses, to reflect on them and if at all possible to discuss them with colleagues who are experiencing the same problem from a different angle. It identifies staff support, supervision and reflective practice groups, if possible with an external facilitator, as often the best way to approach this.
The accounts in this book suggest that the concepts of recovery apply to professionals too. Staff need to maintain, and sometimes need to recover, a sense of meaning and fulfilment in their work, and to hold on to the humanity and compassion that first brought them into the field.
The Voice of Experience
A small disappointment in the book was that the direct voice of people experiencing severe and enduring mental illness or People in Recovery and their supporters was rather less evident than I had expected. and there were generally fewer voices than that of staff at different points of service provision.
The words of those expert by experience that moved me most, were those of the late Janey Antoniou, an extraordinarily brave and talented advocate for many experiencing mental distress. Her chapter on boredom in the ward eloquently highlights other deficits in the system of care. Boredom can be very depressing, when we are under stimulated we feel some how less capable, less able to fit in and less valued. Perhaps saddest of all, and something of an indictment of our mental health system is that Janey’s life story has been vivid, courageous and extra ordinarily generous and yet our society could not reach out far enough, to provide the safety net of support, she needed in order to survive. and we in the recovery movement mourn her passing.
Finally, the book values narrative description. It values hearing people speak as they find. This honest gathering of many views leads us to gain insight into what really works and what doesn’t. It notes the need for more meaningful practice audits. They can be as simple as asking ‘How was it for you?’, ‘How are you finding things?’, ‘What would make things better for you?’ it sounds obvious but the important thing is to listen to the answers. It also mentions the Royal College of Psychiatrists’ Acute In-Patient Mental Health Accreditation system (AIMS). This focuses on reviewing wards, using clinical staff as well as people expert by experience and carers, and some purpose designed audit tools to enable ward teams to assess how their organisation is functioning.
Responding to Personal Stories
The book’s strength lies in its honesty and it’s willingness to hear the stories of all those involved in supporting people experiencing mental illness. These pearls of wisdom need to be garnered and a better system will be developed. It reminds us to explain to patients and family what is happening. What is common place to staff, will be a unique event for the person experiencing mental illness and their family and friends. Lets hold on to the principles of hope offered here, To give the gifts of time and kindness, will help nurture and support those who have fallen by the wayside for a time, so that their recovery of a meaningful life can be a true possibility.
I believe any-one who wants to broaden and deepen their knowledge of how to improve services should add this book to their wish list and engage with its challenges, not least those reflective activities that are printed at the end of every chapter.
Linden Lynn December 2011