Jenny Weinstein on Service User Involvement in Mental Health Care

Jenny Weinstein is now an education and development consultant in health and social care following four years as Principal Lecturer in the Mental Health Department at London South Bank University. Jenny was previously Assistant Director Quality and Performance at Jewish Care and Project Manager at the Central Council for Education and Training in Social Work. She is the author of several books from Jessica Kingsley Publishers, including the recent Mental Health, Service User Involvement and Recovery.

User Involvement

I first became interested in user involvement when I was working for the Central Council for Education and Training in Social Work (CCETSW) in the 1980s where I met an inspiring survivor of mental health problems. He broke the ice at meetings, where he was speaking, by telling the audience who at that time were quite unused to hearing service user speakers, how he had experienced his first break down while working as a civil servant. He had eventually been sectioned with the form that he himself had developed.

At about the same stage, I participated (in my own time) in a brilliant creative writing course at Birkbeck College run by Miriam Hastings. I remember thinking at the time how great it would be to be as creative as Miriam so I could write rather than work in social work. I was interested to discover later that Miriam was herself a survivor and had been co-writing a mental health guidance booklet with some of my CCETSW colleagues. Miriam was generous enough to contribute to the first book I wrote with Jessica Kingsley Publishers entitled Innovative Education and Training for Care Professionals.

I was fortunate to collaborate with some of the original founders of Survivors’ Speak Out on mental health training developments and I recall organizing a conference for Diploma in Social Work providers on User Involvement, which was brilliantly chaired by two charismatic service users – one whose disability required her to lie completely flat and one who was blind. One of the speakers who most moved the audience was a survivor of the care system introduced to me by the charity ‘Who Cares?’ She spoke passionately about the attitude to her education when she was in care explaining how she had been expected to miss an `O` level examination to attend a routine medical and, when it came to `A` levels, the Council could not support her because there was `no budget` for books. This determined young woman had overcome these disadvantages and was in her third year of a law degree at London University.

Since those days, I have tried to undertake any work that I am involved with, whether it is quality assurance, service development, teaching or writing, in partnership with service users. Most of the service users who co-wrote our book Mental Health: Service User Involvement and Recovery had worked with me on previous teaching or quality assurance projects at London South Bank University or Jewish Care. Working with service users has taught me that professionals like me, however experienced or well trained we think we are, often miss the most important issues from a user’s perspective. I believe that hearing service users’ views and having service users involved centrally in all aspects of planning, developing and evaluating services is absolutely vital to ensure high quality services that are fit for purpose.

Copyright © Jessica Kingsley Publishers 2010

Deborah Plummer on Imagework and Helping Children to Cope with Change, Stress and Anxiety

Deborah M. Plummer is a registered speech and language therapist and imagework practitioner with over 20 years’ experience of facilitating groups and working individually with both children and adults. Formerly a clinical lead therapist working within the NHS, she now lectures at De Montfort University, Leicester and runs workshops and short courses on the uses of imagery and issues of self-esteem. She is the author of several books from Jessica Kingsley Publishers, including the new workbook, Helping Children to Cope with Change, Stress and Anxiety: A Photocopiable Activities Book. Visit Deborah’s website here: www.deborahplummer.co.uk.

What are the common causes of stress and anxiety in the children you work with?

For the last 15 years or so of my work within the NHS I specialised in working with adults and children who stammer. Although public awareness about the complex nature of communication difficulties is certainly improving, children who stammer still often experience a considerable amount of anxiety related to their speech, sometimes to the extent that communication becomes something to fear and avoid.

Many of the children I saw for therapy were also susceptible to other sources of stress. Teasing and bullying are perhaps the most publicised of the stresses faced by children with speech and language difficulties but there are other factors such as low self-esteem, coping with difficult family circumstances, coping with change, problems with friendships, hypersensitivity to exam stress, or a drive for perfection which can cause great frustration and anxiety. Working with these children highlighted two important points for me – that stress is an inevitable part of every child’s life, although the degree to which each child will experience stress will of course vary, and that children are remarkable in their capacity to adapt to stress and find their true potential if they are offered appropriate and timely support.

Can you describe one of the coping techniques featured in your new book?

The main emphasis in this and my other books is on fostering mindful interactions. We need to be very aware of the impact that our own ways of communicating can have on how a child views himself and on how he views the world.

So one technique is to help children to formulate their own solutions by pointing out the little successes, capitalising on their strengths, using solution-oriented language, praising appropriately and so on.

The other main orientation of my work is imagework.

What is imagework and how does it help with building self-esteem?

We tend to live our lives guided by the internal ‘images’ that we create about who we are and how the world works. The term ‘imagework’ was created by Dr Dina Glouberman, who leads imagework training courses internationally. It literally refers to ‘working with images’, although it is often image ‘play’ rather than ‘work’! I think this concept of play is especially useful when we are helping children to utilise their imagination in a constructive way. In relation to healthy self-esteem, let’s say a child has a fear of ‘being on show’ and getting things wrong. If I asked this child to draw a picture that would show me what it’s like to have such fears he might draw a time when he has experienced the fear or he might draw an animal or an object or just use colours to represent the fear. This is a fairly common strategy. In imagework I would then help the child to explore the nature of the image in more depth. For example, I might encourage him to make up a story about the image and its ‘opposite’, and to explore how someone (or something) might move from one towards the other.

When a child comes up with an image that represents how he feels about a situation, he is tapping into something that goes way beyond logical thought processes. And when he realises that he can ‘play’ with these images and be creative in forming new images, then he can begin to take more control. Imagework often triggers insights and shifts in perspective which may not come through logical thinking alone.

Children are naturally imaginative – it seems a waste not to use this capacity to support their emotional wellbeing.

What do you find most satisfying about the work you do?

I am currently devoting the majority of my time to lecturing and writing. I am enjoying the opportunity of sharing concepts and strategies learned and developed over many years of working with adults and children in a therapeutic context. I find it immensely satisfying to be able to engage students in exploring the psychological aspects of health and illness in a wider context (I teach students on health studies and public and community health degree courses as well as speech and language therapy students). Frequent or prolonged periods of stress and anxiety can have far –reaching effects on physical health and emotional wellbeing. Practitioners working with children, young people and families therefore need to be skilled in assessing needs, addressing stresses and promoting resilience.

Occasionally I hear from social workers, teachers or parents who have used one of my books and they tell me about a breakthrough that they have had with a child – that is incredibly satisfying for me too – I love to hear how people are adapting the work for different needs and different settings.

You are currently working on a PhD proposal involving your titles what do you hope to find during your research?

The central theme of my books is that there is an identifiable set of criteria which will allow adults to maximise the potential for effectively supporting the emotional well-being of children. My thesis will be an exploration of these elements and will include an evaluation of how people are using the books in a variety of fields. I am designing a questionnaire which will be available on my website. I am hoping that as many people as possible will take time to respond to this. Responses will be used to examine whether or not there is a specific or ‘favoured’ aspect of the approaches adopted in the books which practitioners find helpful, or if there is a certain combination of factors that appeals.

What are you currently reading in your spare time?

I am rediscovering books by James Hillman (e.g. Re-Visioning Psychology) – he has influenced my work for some time and I am thoroughly enjoying devoting time to re-reading some old favourites – his work with images and his love of language and metaphor are so incredible. I find new inspiration each time I read his work.

I am also reading Three Cups of Tea by Greg Mortenson and David Oliver Relin – an amazing book about the humanitarian vision of one man and his belief in the power of education to promote peace. Children are our hope for a more community-minded, peaceful future – we should be nurturing their imagination and emotional well-being in every way that we possibly can.

Copyright © Jessica Kingsley Publishers 2010

Ilona Roth: Some thoughts on International Aspergers Day 2010

Ilona Roth is author of the new book The Autism Spectrum in the 21st Century: exploring psychology, biology and practice, with Chris Barson, Rosa Hoekstra, Greg Pasco and Terry Whatson. She is a Senior Lecturer in Psychology, Department of Life Sciences, Faculty of Science, Open University and Chair of the new Level 1 OU course ‘Understanding the autism spectrum’ which, like the JKP book, is aimed at anyone wishing to find out more about the autism spectrum. Over 1100 students are studying the first presentation of the course.

International Asperger’s Day falls on February 18th. This event, which aims to highlight the significance of Asperger syndrome for both society and individuals, also illustrates one of the many challenges to the newcomer trying to understand the autism spectrum. Such a person might reasonably assume that Asperger syndrome is a condition in its own right. Indeed, its diagnostically separable status within the spectrum is currently enshrined in both the DSM-IV-TR and ICD-10 diagnostic classification systems.

It took many years for Hans Asperger’s work, first published in 1944, to have the influence it has today. Leo Kanner had published his own seminal paper in 1943, coining the term ‘autistic aloneness’ to describe a syndrome-a relatively specific clinical disorder with a characteristic set of symptoms. The unrecognised link between the work of these two men finally came to light when Lorna Wing brought Asperger’s work to wide attention in the 1980s. This vital step in the transition from autism considered as a syndrome, to the 21st century concept of an autism spectrum has transformed clinical thinking and public understanding. The diagnosis of Asperger syndrome provides relief to countless individuals whose relatively ‘mild’ autistic traits would previously have been interpreted as eccentricity, bad behaviour or the like. And, of course, a broad diagnostic spectrum is one factor contributing to the greatly raised prevalence estimates for autism as a whole.

Yet just when the concept of Asperger has become so firmly established in both clinical practice and public understanding, the latest report from the DSM-V Neurodevelopmental Disorders Work Group signals the likelihood that Asperger syndrome, and other diagnostic ‘sub-types’ within the spectrum will be replaced by a single label, ‘autism spectrum disorder’, individuals being differentiated according to the severity of their symptoms. The rationale for this change is understandable-for instance the need for greater reliability and consistency in diagnoses between different clinicians, places and times. But the consequences will be manifold: to those for whom the label ‘Asperger syndrome’ is a badge of identity, the change may be unwelcome. For others, it may bring greater recognition of the difficulties experienced even at the ‘high-functioning’ end of the spectrum.

Charting the unfolding concept of the autism spectrum is just one of the many themes developed in The Autism Spectrum in the 21st century: exploring psychology, biology and practice to provide a lively, accessible and up to date introduction to the autism field. The book caters, especially, for people approaching the field for the first time, who may otherwise struggle to identify reliable sources from the vast array of books, newspaper articles and internet sites, and may fail to get to grips with often complex theories and research findings. The intended audience includes teachers, health and social work professionals, parents, and individuals on the spectrum who would like to find out more about their own condition. Beyond this are students of psychological, biological and health sciences, and many others who just want to know more about this fascinating topic.

This book, which I have written with colleagues from the Open University, The Autism Research Centre at Cambridge University, and the National Autistic Society, covers the core topics, from psychological and biological explanations of why autism occurs, to diagnosis, intervention, education, family life and societal issues. The approach is not just to inform readers about a topic, but to equip them with the tools to analyse and evaluate material for themselves, via step-by-step guides to the key methods and approaches used by researchers and practitioners. We employ the Open University’s tried and trusted interactive study techniques, including key terms in bold, accompanied by definitions in an online glossary, section by section summaries, and self-assessment questions for readers to test their own understanding.

Last but not least, while our book draws extensively upon sources offering authoritative ‘outside’ perspectives on autism, we interpolate these with the first-hand accounts of people on the spectrum, whose ‘inside’ perspectives do so much to challenge, enrich and enhance our understanding.

Copyright © Jessica Kingsley Publishers 2010

Linda Woodcock on Managing Meltdowns

Linda Woodcock is the co-author author of the title Managing Family Meltdown: The Low Arousal Approach and Autism, published by Jessica Kingsley Publishers. She is the National Lead on Parent and Family Training for The Studio III Group, an organization specializing in non-aversive behaviour management. Linda also has a son on the autism spectrum with challenging behaviours.

As a parent of a child with autism, what do you think are the main challenges faced by parents with children on the spectrum?

There are so many challenges, first of all coming to terms with the diagnosis, we often spend so much time and energy trying to get news that we really don’t want to hear and then we wish we could put back the clock as when the diagnosis is given our lives change forever. The next stage is wading throught the complexity of what autism is and how it affects our children, (this is a continuous process) We are then expected to become experts in the education, social care and benefits system and so the fight begins. Looking back now I am able to see the positives but in the early years life was just one long rollercoaster ride and all we could do was hold on tight!!

Your new book is based upon the “the low arousal approach” can you please tell us a bit about this approach and how it can help to manage meltdowns?

The low arousal approach is based on three assumptions firstly that most individuals who are distressed are extremely aroused at the time, therefore we should avoid doing anything to make it worse. Secondly, a large proportion of distressed behaviours are usually preceded by demands or requests and we should therefore reduce these as much as possible and finally most communication is non verbal and so we should be aware of the signals we communcate to our children when they (and us) are upset.

Can you tell us about your work with the Studio III group and the work they do?

Studio 3 is a training and clinical service, which was founded 15 years ago by our Director Dr Andy McDonnell, Clincial Psychologist. We offer training to staff and families in Positive Behaviour Management, we also work with individuals who challenge services and offer Psychological assessments and help staff to devise support plans using the low arousal approach. We are based in the UK but work in many other countries including Ireland, Denmark, Germany, Sweden and South Africa.

How do you think the public perception of autism has changed over the last ten years?

The public perception of autism has changed greatly over the last ten years, with more children accessing mainstream education they have become more visible, and autism is no longer percieved to be just about the isolated self absorbed silent child, however I don’t think their general understanding has greatly increased. Any parent will tell you that a large part of their energy is spent on educating the public, teachers, medical professionals and wider family about their child and their needs.

What are you currently reading in your spare time?

Well I have just finished The Time Travellers Wife which was beautiful, but as I am about to start the second year of my Masters degree I will be reading the rather large text book which has just been delivered to my door! Colin Robson, Real World Research. I don’t expect I’ll have time for any light reading this year.

Copyright © Jessica Kingsley Publishers 2010