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My final book on dementia: on a person-centred approach to enhancing health and wellbeing

The title of the book reflects the fact every person has a human right to health, and that wellbeing is a critical part of wellbeing. It was published earlier this month by Jessica Kingsley Publishers (page including pre-publication reviews here).

 

Many of the issues raised in the book coincidentally have been raised in the draft World Health Organization global ‘draft action plan’, worth a look at here http://apps.who.int/gb/ebwha/pdf_files/EB140/B140_28-en.pdf, published 23 December 2016.  It is felt that while this document is not ‘perfect’ it is a good start. For example, the palliative care approach is specifically signposted in clause (56).

 

People are entitled to the best of care regardless of setting – for example, Dementia Care Mapping™ (DCM™) has been used as an observational tool which has been designed to be used within formal care settings such as care homes, nursing homes, day services and hospitals. This book is, in fact, in part dedicated to Dawn Brooker, and frequent references are made in the text to Tom Kitwood. The book is also dedicated to Martin Rossor, national director for dementia research, for whom I worked in 2003. I do not of course wish to speak about the specialist area of personhood as I feel that would be entirely inappropriate.  An excellent book on this area, however, is “Person-Centred Dementia Care, Second Edition: Making Services Better with the VIPS Framework”, by Dawn Brooker and Isabelle Latham, also published by Jessica Kingsley Publishers https://www.amazon.co.uk/d/Books/Person-Centred-Dementia-Care-Second-Framework/1849056668.

 

 

My book is intensely evidence-based but not in a way, I hope, which is off-putting to the primary audience – who are not commissioners, but persons living with dementia and carers. I certainly believe that it is the primary duty of researchers at least to think about the basic translation of research into practice. Many of the interventions and service developments will ultimately rely on this.

 

Thankfully, there are people in care settings who think very carefully about the environment of care, for example helping carers identify, find solutions and create a care culture to overcome mealtime eating problems in dementia. ‘Working with’ collaboratively not working to patients has been a fundamental change in attitude for organising services and research, and the fundamentals of co-production are intimately linked to citizenship and human rights. And we do need to ensure people get access to the right care at the right time. For example, there can be difficulty seeing your GP, or dementia care is an increasingly important strategic consideration for palliative and end of life care providers, including hospices. It is noteworthy that, through working in partnership with their local community and care providers, hospices can ensure that the best of hospice care is extended to everyone affected by a diagnosis of dementia within their local community.

 

 

Responding to the challenge

 

The NHS Five Year Forward View, the current strategic ‘masterplan’ of the NHS, emphasises integration, personalisation and empowerment:

 

There is broad consensus on what the future needs to be. It is a future that empowers patients to take much more control over their own care and treatment. It is a future that dissolves the classic divide, set almost in stone since 1948, between family doctors and hospitals, between physical and mental health, between health and social care, between prevention and treatment.”

 

Chapter 1, Five Year Forward View, 2014 (https://www.england.nhs.uk/ourwork/futurenhs/nhs-five-year-forward-view-web-version/5yfv-ch1/)

 

Dementia has been the target of much stigma from society, and despite the rhetoric of ‘parity of esteem’, much more can be done to understand the physical and mental health needs of persons living with dementia.  Recent initiatives such as ‘dementia friendly communities’ have identified that dementia is unlikely to be the only medical condition a person might live with long-term, and all that communities should be inclusive and accessible. Preventing certain people from being lonely and isolated has immeasurable social and well-being benefits for the individual. There are some amazing ‘dementia friendly’ initiatives – for example, a visit to the theatre can have a profound impact on people living with dementia and their families. It is crucial that all initiatives are culturally inclusive too, including raising awareness and promoting understanding of dementia within culturally diverse communities, which might mean physically visiting day centres, community groups and religious centres to talk about dementia and tackling the stigma that surrounds dementia.

 

Dementia is thought to be the most feared condition in adulthood, and this can affect diagnosis-seeking behaviours as well as the message that ‘nothing can be done’ after a diagnosis. A person never receives a diagnosis of dementia alone; so, understanding how the diagnosis impacts on that person and those closest to him or her is of fundamental importance. What happens after a diagnosis can be incredibly complex, and we need health and social care systems which are flexible, adaptable, and correctly resourced to cope. Interventions for living well, supporting well or caring well are not just medical, but can also be psychological (cognitive or behavioural) – and might prevent further decline. Professionals can unfortunately instil a feeling of helplessness in a person diagnosed with dementia, referred to within Kate Swaffer’s construct of ‘prescribed disengagement’™.

 

I propose in the book that there are key demands of integrated care which I picture in the Preface as spokes of an umbrella.

umbrella

 

‘Responding’ to a new diagnosis of dementia needs new, flexible ways of adapting.

 

Take for example the description of Wendy Mitchell – living with dementia:

 

However, I’m also hoping I can convey that, although we’ve been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humour; we still have feelings. I’m hoping to show the reality of trying to cope on a day-to-day basis with the ever-changing environment that dementia throws at those diagnosed with the condition. Living well with dementia is all about adapting. Adapting to new ways to enable us to live better for longer with dementia.”

 

(Wendy Mitchell’s blog – “Which me am I today?” https://whichmeamitoday.wordpress.com)

 

Dementia is a prevalent condition, but trends are complicated due to the effect of risk reduction work, the numbers of our ageing population and improved rates of diagnosis nationally. There are approximately about 900,000 people currently living in the UK with dementia. However, the nature of the condition means that managing it can pose unique and sometimes difficult issues, both in the community and in other care settings, and “dementia is everybody’s business” meaning that this is a widespread societal concern, not just the caring professions.

 

With the right support and opportunities, people with dementia and carers can successfully communicate, engage, participate and continue to be part of relationships and communities, and this is no matter how advanced their dementia.

 

This third book provides some of the ingredients to a recipe providing the change for people living with dementia and carers would be supported in a holistic, person-centred way. It is impossible to deliver person-centred care in an exceptional way, without staff feeling properly supported and empowered to fulfil their roles. The language we use is a critical aspect to this. Notwithstanding, there is a strong sense of interconnectedness in the ‘dementia’ sphere, and people in person-centred integrated care tend to be aligned to certain values of openness, trust, valuing difference, innovation and collaboration.

 

There have been enormous strides in how people living with dementia are supported, however there is always more to be done. Technology now embraces telehealth, telecare, mobile health, telemedicine, e-health, smart home technologies and Internet of Things, but is increasingly including informatics (including electronic health and care records), big data, artificial intelligence as well as health and care robotics. Digital technology and social networks provide some of the most powerful tools available today for building a sense of belonging, support and sharing among groups of people with similar interests and concerns.

 

Despite the lack of ‘caring well’ in the NHS Transformation Network, presumably subsumed under ‘living well’ and ‘supporting well’, my book is worth reading with their construct in mind. It can be viewed on this hyperlink: https://www.england.nhs.uk/mentalhealth/wp-content/uploads/sites/29/2016/03/dementia-well-pathway.pdf.

 

dementia-well-pathway

 

Cost pressures are requiring providers to find new ways of developing a compassionate, capable and competent, yet affordable workforce. Furthermore, both specialist and generic services can struggle to cope with the increased demand upon services. We know there’s a ‘funding gap’ referred to the ‘Five Year Forward View’. But this should be the driver behind transformation plans. Many people involved in dementia care feel there’s also a ‘time gap’ – people with dementia need more of it and hospitals don’t seem to have any. The experience of someone with dementia is often affected by how well the discharge out of hospital goes. For example, a specialist occupational therapist to make sure we got the discharge process right for dementia patients and focussed on safe transfer of care from hospital into the community. Many would like to give a commitment to really making time for residents in its care homes and houses allows all to be treated as individuals, as this provides an environment where residents who are living with dementia can improve their quality of life.

 

The pressures on residential care are enormous. Some care homes face insolvency. A person with dementia is an individual with individual needs and changes to the environment can affect that person, and these could include the health and wellbeing of staff.  The potential problem with framing promoting wellbeing as ‘activities’ is that the focus instead of being on the person becomes focused on the task. Promoting wellbeing might advance ‘life skills’ and improve mental condition, helping and inspiring participants to reminisce and rediscover aspects of their lives. Ideally then all ‘activities’ would be based on the interests, desires and wishes of our residents, and might include tai chi, massage, cream tea, arts, singing, flower arranging, or music. We know that communication is incredible important. Stories can strengthen emotional links between generations, and help to mitigate against negative effects of the combination of dementia, depression and loneliness in communities.

 

We live in exciting times.

 

 

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Enhancing health and wellbeing in dementia: a person-centred integrated approach, reviews

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This is a book all about a possible integrated care pathway for dementia. It places at the heart of the narrative a person who’s received a diagnosis of dementia and the people who care for him or her, so nobody is left behind.

Thanks to the following for their pre-publication comments for my book to be published on 19 January 2017. I should like to thank all of the people below for considering the whole manuscript before offering the following responses.

The abbreviated comments are also provided on the Amazon UK page for my third book on dementia.

 

‘This important book continues our journey of what it means to see the person beyond their diagnosis of dementia, with a fresh focus on freedom, dignity and human rights. Dr Shibley challenges the idea that nothing can be done to improve dementia care. He brings practical thinking around how we can move towards truly integrated, person-centred ways of working – making a timely and valuable contribution to our collective understanding.’

– Dr Helen Sanderson, author of Person-Centred Thinking with Older People

 

“There can be no doubt that ‘Enhancing Health and Wellbeing in Dementia’ should be essential reading for anyone with an interest in improving the lives, and rights, of people living with dementia. It is an important book which is both comprehensive and practical – no easy matter to achieve! His encyclopaedic span concludes appropriately with the primacy of person-centred approaches, the importance of dignity, quality and leadership – yes, yes, yes!”

– Des Kelly OBE, Chair, The Centre for Policy on Ageing

 

 

“Shibley’s voice has emerged as an important one to take notice of within dementia care. His ability to draw together a huge range of knowledge from many different spheres of research, practice and policy and to use it to light our way rather than confuse us further is unique.”

– Prof Dawn Brooker, Director of the Association for Dementia Studies at the Worcester University, UK

 

“An absolute gem of a book. Through his career, Shibley Raman has been sequentially academic neurologist, service user, family carer and blogging activist. His learning and wisdom have been distilled into a highly readable, comprehensively referenced and bang up-to-date companion for anyone who needs to learn and understand about people with dementia and what can be done to help them, their families and professional carers to get the very best out of life.”

– Prof Robert Howard. Division of Psychiatry, University College London

 

“Practitioners, family carers and people with dementia looking for a comprehensive resource about dementia need look no further. Few books combine detailed explanations about clinical aspects of dementia with policy analysis and yet remain so centred on people’s individual experiences. This is an important resource for anyone who wants to understand more about providing better dementia support.”

– Jo Moriarty, Senior Research Fellow and Deputy Director, SCWRU, King’s College London

 

“The third of Rahman’s books on issues relating to dementia. Another must-read text that discusses the many and varied elements of what is required to enhance the lives and wellbeing of people with dementia. I particularly like his style of telling us what we can expect to learn from each section and suggestions for further reading.  This, as well as the first two books from the author, is an essential read for all health and social care students in gaining an overview of caring in dementia.”

Dr Karen Harrison Dening, Head of Research & Evaluation, Dementia UK

 

“This is a complex and difficult journey and Dr Rahman’s book is like having an informed, interested, intelligent and profoundly humane friend by your side on the journey through. This book is a friend that is encyclopaedic in knowledge and who is not afraid to have opinions and to express them. We are part-way along the journey, we have come a long way but we have far to go. This book helps us reflect on where we are and the road we have travelled, all the better to plan and travel the road ahead.”

Prof Sube Banerjee, Chair of Dementia Studies at Brighton and Sussex Medical School, co-author of the English dementia strategy (2009) “Living well with dementia”

 

“‘Great book on integrated, person-centred dementia care. Clearly identifies issues often overlooked: importance of relationships in delivering good care; pivotal role of care homes in caring for people with dementia; and value of addressing staff needs so they can be in good relationship with others. It’s not rocket science!’”

— Prof Julienne Meyer, CBE, Professor of Nursing: Care for Older People and Executive Director: My Home Life, City University London

 

“This is a wonderful book, for students, health professionals, researchers, policy makers, politicians and families, and for people who may be in the early stages of one of the diseases that causes dementia. This is a book that challenges but also gives hope. Which I think is the greatest gift of all.”

—Lisa Rodrigues, CBE, writer, coach and mental health campaigner, www.LisaSaysThis.com

 

‘Shibley Rahman’s last book in his trilogy on dementia represents a comprehensive and thought provoking tour de force through the subject matter – great reading for any health and social care professional, academic and interested lay person. Here is a perspective from an author who in himself integrates academic qualifications in medicine, law and management with a lived experience of disability. A unique read!’

— Reinhard Guss, Chair, Faculty of the Psychology of Older People, British Psychological Society

 

“What they all have in common is a need for health and social care professionals to come into their lives with understanding, and a recognition of the need for the diseases that cause dementia symptoms to be understood, so that the person or their carer never feels they are being led blindly through our health and social care systems. They don’t need us all to be experts in the scientific constructs of dementia, but they need us to know enough to respond sensitively and with confidence.

A better understanding of what person-centred care is, in the context of dementia, is what will help us to achieve this. I am hopeful that this book will  appeal to specialists and non-specialists alike, and that it will inform and influence professionals who support people living with a dementia.

This book is an important milestone in Dementia Care literature as it provides information to help us answer the difficult questions we face as professionals helping to support people and families. The different types of dementia all have in common that they cause a person to have needs around changing health and wellbeing. The discussion flowing through this book, points to where the answers are to improving how we meet those needs.”

— Lucy Frost

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Dementia health care and wellbeing – a person-centred integrated approach. My book for April 2017.

before editing

Dr Shibley Rahman

Queen’s Scholar BA (1st Class) MA PhD (all Cambridge); MRCP(UK) LLM MBA

Forewords by

Prof Sube Banerjee

Lisa Rodrigues

Lucy Frost

For publication: March 20th 2017 Jessica Kingsley Publishers

About this book:

This book brings different strands in dementia bang up to date. It coincides with the publication of the new NICE guidance “Assessment, management and support for people living with dementia and the carers” to be published in November 2017, as well as publication of the “Dementia Core Skills Education and Training Framework”. It is a coherent evidence-based synthesis of the importance of a person-centred integrated approach, and discusses how integrated care pathways might facilitate this. It is sometimes forgotten that a fundamental right to health underpins wellbeing across all settings, including in care homes (and nursing homes), at home and in hospices, but it is often forgotten that physical health is an important component of wellbeing. This book therefore covers a diverse range of topics including also mental health in care homes, meaningful activities in residential settings, the whole health and social care ecosystem including getting into and out of hospital in a timely manner, as well as enablement through targeted support. Key themes such as dignity in health, care and wellbeing straddle key strands in personhood, human rights and the biomedical approach, and these themes are of critical prominence in service improvement through research, regulation and nurturing of staff. The book will be of help to people living with dementia, carers, dementia leads, care home managers, commissioners, professionals and practitioners, and academics, as well as interested members of the public.

Contents:

Chapter 1

Preventing well and diagnosing well

Chapter 2

Overview of caring well

Chapter 3

Caring well: physical health and medication reviews

Chapter 4

Caring well: mental health

Chapter 5

Cognitive stimulation, cognitive rehabilitation and life story

Chapter 6

Oral health and swallowing difficulties

Chapter 7

Promoting wellbeing

Chapter 8

Sexuality and spirituality

Chapter 9

Research, regulation and staff

Chapter 10

Care homes and integrated care

Chapter 11

Supporting well and independence

Chapter 12

Dying well and end of life

Chapter 13

Living well at home

Chapter 14

Conclusion

 

Dedication

It is my great pleasure to dedicate this book to two people.

First, I am thankful to Prof Martin Rossor. I worked for Prof Rossor in 2002 as a junior at the National Hospital for Neurology and Neurosurgery, Queen Square. His contribution to clinical care and research in dementia has been exceptional.

Second, I would like to give special thanks to Prof Dawn Brooker. Whilst I have never personally worked for Prof Brooker, her contribution in personhood and dementia has been remarkable against the reality of the NHS, and she personally has been inspirational for many leaders in dementia around the world.

I should like to thank especially Prof Sube Banerjee, Lisa Rodrigues and Lucy Frost for kindly writing forewords to this book. And finally, I should like to thank enormously Chris Roberts for giving me the idea to write this book, the third in fact in my ‘trilogy’.

 

 

 

Dr Shibley Rahman

London, September 2016

 

 

 

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Enhancing health and wellbeing in dementia: care homes and care at home

telehealth

I am very honoured that the main foreword will be by Prof Sube Banerjee, Chair of Dementia at Brighton and Sussex Medical School.

Sube is very influential in English dementia policy. His contributions have been outstanding. Indeed, he co-authored the original English dementia strategy ‘Living well with dementia’ in 2009 on behalf of the Department of Health.

I am very honoured that the other two forewords are to be by Lisa Rodrigues and Lucy Frost, who have substantial interest and knowledge in dementia.

The book will be a timely look at the evidence, with many of the topics being rehearsed elsewhere in policy, such as the NHS Five Year Forward View, or the NICE guidance on dementia (currently in development).

This book is likely to be published by Jessica Kingsley Publishers in the end part of 2016.

 

Chapter 1 : Overview

I will draw on the existent literature to consider what has emerged about a consensus about ‘care pathways’ for dementia, in particular the events which can lead up to “crises” or transfer to a residential settings. There has not been an adequate look at the work up in primary care for dementia, and I will consider how domestic policy might be harmonised with international guidance. In the presence of an evidence base for dementia advisors and dementia support workers, I will consider the potential of signposting to services. I will re-visit the evidence base for prevention of dementia, and the current evidence base for the use of cholinesterase inhibitors and other drugs, but will concern myself with the impact of human rights, disability and sustainable communities in current thinking. The largest part of this chapter will be considering quality of care, and novel approaches such as integrated personal commissioning and the personal medical care home. Throughout the book, there will be a detailed discussion of the need to promote the health and wellbeing of carers, both paid and unpaid, and to consider coping strategies which might help through clinical specialist nurses and social care practitioners, and other colleagues.

Chapter 2 – The caring environment and culture

This chapter will explore evidence for the components of the built environment and sensory stimulation and enhancing person and relationship centred care which enhance health and wellbeing across care settings. The main emphasis will be on considering what change might be needed, and under what leadership from all stakeholders, to ‘improve’ services, howeverso defined, and the rôles that risk and innovation might play in the future. If there are truly ‘no more throwaway people’, this chapter will also include how the social capital from people with dementia and carers might be consolidated to build more resilient communities co-designing research and services.

Chapter 3 : Physical health and aspects of pharmacy

Enhancing physical health is essential across all different care settings. This chapter will review the current evidence for management of falls, frailty, pressure sores, urinary tract infections, and hip fractures, as well as aspects of nutrition and metabolic medicine, from a multidisciplinary perspective, emphasising the role for allied health professionals. Aspects of prescribing will also be considered, including overuse, underuse and inappropriate use of medications, and what evidence base has thus far built up in the area of ‘therapeutic lying’ and its ethical implications.

Chapter 4 : Wellbeing and mental health

This chapter will consider aspects of mental wellbeing, including self and identity, and awareness and insight. Its will also consider various other issues to do with mental health, including agitation, apathy, depression, and sleep.

Chapter 5 : Cognitive stimulation and life story

A substantial evidence base has built up concerning non-pharmacological approaches to dementia. This chapter will consider diverse approaches including cognitive stimulation, reminiscence work and cognitive neurorehabilitation. This chapter will also consider the evidence base for ‘life story’ and how it has been approached across various care settings.

Chapter 6 : Oral health and swallowing difficulties

This chapter will consider a much neglected area of health and wellbeing, relevant to holistic health and wellbeing, that of oral health and disease. Current important issues in this field will be considered, including dysphagia and mastication, as well as possible areas of interest for the future.

Chapter 7 : Activities

This chapter will evaluate critically what exactly is meant by the term ‘meaningful activity’, and consider whether reframing of the narrative, such as promoting creativity’ might be more helpful. The chapter will discuss the importance of communication across this area, but consider specifically the arts, drama and theatre, dancing, gardening and outdoor spaces, humour, and music.

Chapter 8 : Spirituality and sexuality

Identity and relationships have emerged as key themes across various conceptualisations of personhood, including of course Tom Kitwood’s. This backdrop will be presented at first, before considering key issues in sexuality, spirituality and religiosity, not only in life after a diagnosis, but also for enhancing health and wellbeing across all health and care settings.

Chapter 9 : Research, regulation and staff

Research and regulation are examples of ‘work in progress’. This chapter will consider the key directions of research in the dementias, both qualitative and quantitative, across various care settings. This chapter will also consider specific areas of interest, including barriers to drug development including regulation. The overall area of regulation will be considered in terms of proportionality, and celebrate areas of good practice. The chapter will also consider areas which also are of utmost importance such as abuse and neglect, and adult safeguarding in general. The chapter will also include a discussion of how the health and wellbeing of staff might be promoted better to meet the needs of people with dementia and carers.

Chapter 10 : Care homes in integrated care

There have been various fashions and fads in thinking about ‘integrated care’, and part of the problem has been the plethora of different perspectives and models. This chapter will adopt a practical perspective of people living with dementia and carers having their health and wellbeing attended to in the right place, right way and the right time, and consider various aspects concerning this. Consequently, the discussion will emphasise advance care planning, attending hospital, admission and re-admission, avoiding hospitals, care transitions, case management, the “future hospitals” initiative from the Royal Colleges of Physicians, improving patient flow, intermediate care and discharge, liaison psychiatry and CMHTs, specialist clinical nurses including Admiral nurses, and “virtual wards”.

Chapter 11 : Independence

This chapter will consider some important diverse areas which intend to promote independence, their progress and impact in overall policy. These include electronic medical and care records, “individual service funds”, and reablement. This chapter will also consider potential opportunities and risks from personal genomics and personalised medicine.

Chapter 12 : Palliative care and end of life care

It is beyond dispute that palliative care and end of life care are essential components of promoting health and wellbeing in people living with dementia and carers. Person-centred care, maximising continuity of care, is fundamental. This chapter will consider the special features of this approach which are very important, and also consider why there has been a reluctance amongst some to consider dementia as a terminal illness. The chapter will also consider the significance of grief, and also consider a possible notion of ‘pre-grief’.

Chapter 13 : Living at home

The first twelve chapters are very relevant to the final chapter on living at home. Whilst much of the media attention is on care homes and nursing homes, or residential settings in general, there is remarkably little focus on living at home, including living at home alone, despite enormous interest in this amongst the general population. This chapter will consider how this approach may have evolved from the philosophy of ‘successful aging in place’, and consider how specific home environments might be enhanced including extra care environments. This chapter will include discussion of, specifically, community nursing including Buurtzorg Nederland, day and respite care, self management. telehealth and technology, and smart homes. The pivotal role of social care and social work will be emphasised throughout.

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Enhancing health and wellbeing in living with dementia: care homes and care at home

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I am currently working on this third book on dementia.

 

 

These therefore follow on from my previous books ‘Living well with dementia: the importance of the person and the environment’ (CRC Press, 2014) and ‘Living better with dementia: good practice and innovation for the future’ (Jessica Kingsley Publishers, 2015).

I am honoured that the book will have forewords from Prof Sube Banerjee, Professor of Dementia, who co-authored the 2009 English dementia strategy, Lisa Rodrigues and Lucy Frost.

Whilst recent years have witnessed massive progress in dementia friendly communities in the UK and elsewhere, there has also been a greater scrutiny of ‘post diagnostic care’. This book reviews the evidence for enhancing health and wellbeing for people living with dementia, and will be useful for anyone designing, researching or using these services. The quality of residential care settings is intimately related to the philosophy and culture of care, but there is growing recognition that residential homes are part of an extended system of the provision of healthcare including the acute hospital. People living with dementia are entitled to the best standards of health care, for both physical and mental health, but also need their life story and identity to be respected. The book concludes by evaluating critically what features of the healthcare system might be desirable to encourage independent living (including at home) and integrated health, and why palliative care and specialist nursing must be a key factor in the design of care pathways at both a national and local level.

A detailed consideration of end of life care and life story, whilst introduced in this text, is beyond the scope of this book. They are covered elsewhere in detail by future books from Jessica Kingsley Publishers.

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