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in Paediatrics

Neurodisability
and Community
Child Health
SECOND EDITION

edited by
Srinivas Gada
Consultant Paediatrician in Neurodevelopment and
Neurodisability, Nuffield Health Oxford and HCA
Healthcare London
Honorary Senior Clinical Lecturer, University of Oxford
Honorary Consultant, Oxford University Hospitals NHS
Foundation Trust, Oxford, UK

1
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First Edition published in 2012
Second Edition published in 2022
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contained in any third party website referenced in this work.
v

Dedication
I dedicate this book to my parents, Sulochana and Shankerappa,
for their countless sacrifices for my education, and without whom
I would not be here.
vii

Foreword
It is a privilege to offer a foreword to this new Handbook for the ever-
expanding field of neurodisability—what I like to call the field of ‘Applied
Child Development’.
As Dr. Gada rightly notes in his Preface, child-onset neurodisability and
community child health has seen remarkable change and development in
the past decade. Fundamental shifts—more accurately characterized as ex-
pansions in our thinking—have made the field almost unrecognizably richer
than was ever imagined possible by those of us trained in twentieth-century
thinking! Among the contributing forces in these developments one can cite,
in no implied order of priority, the WHO’s 2001 International Classification
of Functioning, Health, and Disability (ICF) framework for health; the rec-
ognition that parents must be equal partners with professionals, and the
importance of our engagement with them at every step of the journey;
seeking and heeding the voices of children; seeing ‘childhood’ issues in a
life-course perspective; and promoting the functioning and participation of
young people with impairments who were traditionally assumed to be sen-
tenced to lives of limited possibility.
This Handbook provides readers with accessible notes and guides to a
myriad of topics, with detailed cross-linking of each section to many others.
In this respect, the Handbook is a refreshing complement to the traditional
textbook, with discursive writing on background, placing ideas in context
with the history of the topic, detailed explanations, justifications, interpret-
ations of the arguments, and so on. (Full disclosure, I have experience with
such textbooks and believe they also have a place!)
What makes this current volume so useful is the immediacy of access to
whatever the user seeks to know right now. As a Handbook, the focus is
on the practical application of the available knowledge and ideas it offers.
As noted, there are always links to other parts of the text where the reader
can recognize the ways that concepts discussed in relation to a particular
impairment or diagnosis almost always have wide-ranging ‘non-categorical’
relevance across the field.
Finally, I believe it is essential to celebrate, with this Handbook, the ac-
cumulation of what Dr. Gada notes as the ‘insights, experience, and know-
ledge’—indeed, it is fair to call this ‘clinical wisdom’—of colleagues across a
wide range of disciplines and from many countries. Their rich contributions
blend together the modern scientific developments of our ever-expanding
field with the humanism and art of caring for children with complicated lives
and their families. This is a much-appreciated achievement.

Peter Rosenbaum, MD, FRCP(C), DSc (HC)


Professor of Paediatrics, McMaster University
Canada Research Chair in Childhood Disability 2001–2014
Co-Founder, CanChild Centre for Childhood Disability Research
Editorial Board, Mac Keith Press
ix

Preface
A lack of a concise, easy-​to-​use, and updated resource on child neurodisability
and community child health motivated me to write this book. This book is
a sequel to the Oxford Specialist Handbook of Community Paediatrics, pub-
lished in 2012, but this edition focuses more on neurodevelopmental dis-
orders. Thus, this book contains hundreds of topics on neuroplasticity, child
development, neurobehavioural disorders, sensory impairments, neuro-​
orthopaedics, neuro-​genetics, neurorehabilitation, mental health and allied
therapies.
This book is a culmination of my twenty plus years of clinical experience
in child neurodisability and community child health at Oxford University
Hospitals NHS Foundation Trust, Oxford and previously at Royal Free
Hospital and Royal London Hospital in London. During the past two dec-
ades, I have had the privilege to work with my colleagues in Oxford and
learn in my various professional capacities, such as consultant community
paediatrician, child development team lead, course director, hon senior
clinical lecturer, educational supervisor, clinical governance lead, editor, re-
viewer and a team member. This book contains all my clinical experience
enriched with informative, up-​to-​date and concise summaries on hundreds
of topics written by experts across the globe. I have been honored to work
with this team of specialists from the USA, Canada, Australia, India, and the
UK who have decades of medical experience and abundant clinical wisdom.
Therefore, this book will serve as an essential companion and first point of
reference to both established practitioners and trainees in neurodisability,
community child health, paediatrics, general practice and professionals from
multidisciplinary and multiagency teams.
Changes in the field of neurodisability and community child health can
seem slow, feel imperceptible and even go unnoticed. Yet, so much has
changed since this book’s predecessor in 2012. There has been the launch
of the DSM-​5, ICD-​11 and numerous new guidelines from authoritative
sources such as NICE, AAP, RCPCH, and EACD. This book has been com-
pletely revamped to reflect this updated guidance. In addition, this book has
been presented in an intuitive, easily readable format, with extensive use
of bullet points, tables, boxes, flow charts, sample reports, clinical tips, and
signposting to valuable resources.
This book is a portable guide focusing on practical advice that is clinically
effective, helping you know what to do and how to do it. Furthermore,
this book contains the insights, experience, and knowledge of experts from
various disciplines such as neurodevelopmental paediatricians, neurology,
psychiatry, orthopaedics, genetics, rehabilitation specialists, child protec-
tion, safeguarding, adoption and fostering, special educational needs, and
x Preface

therapists from multidisciplinary teams. Consequently, this book supports


you in working collaboratively with other professionals, thus enabling you
to deliver holistic care and make a positive difference in the lives of children
and the families you serve.
Dr Srinivas Gada
Oxford
November 2021
xi

Acknowledgements
After serving at Oxford University Hospitals NHS Foundation Trust from
2005, I stopped working at this prestigious institute in 2019 to focus on
completing this handbook and be more available to my ageing parents.
I want to offer my special thanks of gratitude to my parents, both of whom
passed away during the writing of this book and couldn’t be around to
see this book in print. Like many around the globe, the COVID-​19 pan-
demic was brutal, and it affected the production of this book in many ways.
Nevertheless, reminding myself of the patience and perseverance of my
parents helped me to conclude this book.
This book would not have come into being without the expertise and as-
sistance of the editorial team at OUP, namely Nicola Wilson, Nic Williams
(freelance copyeditor), Clement Raj (Newgen Knowledge Works), and es-
pecially Sylvia Warren. Sylvia’s patience and support were crucial for this
project.
As a practising neurodevelopmental paediatrician, much of the informa-
tion in this handbook was drawn from my two decades in clinical practice.
Therefore, my utmost thanks go to all the children and their families who
shared their challenges with me.
I would like to extend my sincere gratitude to all the contributors for
their hard work and for offering their valuable time and expertise, despite
challenging work conditions at their institutes due to the pandemic. Their
commitment was crucial for the conclusion of this project.
My special thanks go to Professor Georg Hollander, Dr Ivor Byren, Dr
Martin Smith, and Nicki Sullivan for offering me professional support. My
thanks also go to all my ex-​colleagues at Oxford University Hospitals NHS
Foundation Trust.
I am indebted to my wife, Vaishali, and my daughters, Ritu and Pooja, for
their numerous sacrifices, encouragement, and practical help while I spent
countless evenings and weekends working on this book.
Dr Srinivas Gada
Oxford
October 2021
xiii

Contents

Contributors xv
Symbols and abbreviations xvii

1. Working with child and family 1


2. Child development and neuroplasticity 29
3. Neurodevelopmental disorders and neurodisability 89
4. Sensory impairments 167
5. Neurological disorders 217
6. Mental health and behaviour 285
7. Therapies in neurodisability 373
8. Care of the child with a disability 433
9. Genetics and syndromes in neurodisability 483
10. Neuro-​orthopaedics 523
11. Child protection and safeguarding 559
12. Adoption, fostering, and looked after children 619
13. Special educational needs and disability 649
14. Working with multiagency professionals 675

Index 685
xv

Contributors

William J. Barbaresi Nuffield Health Oxford and HCA


Professor of Pediatrics, Wade Healthcare London
Family Chair in Developmental Honorary Senior Clinical Lecturer
Medicine University of Oxford
Department of Pediatrics, Division Honorary Consultant
of Developmental Medicine Oxford University Hospitals NHS
Harvard Medical School, Boston Foundation Trust
Children’s Hospital Oxford, UK
Boston, MA, USA Suneel Godbole
Mohan V. Belthur Developmental Pediatrician
Associate Professor and Director, Head of the Department,
Neuroorthopaedic Unit/​Bubba Small Steps Morris Autism &
Watson and Ping Motion Analysis Child Development Centre,
Laboratory Deenanath Mangeshkar Hospital &
Department of Orthopedics Research Centre
Phoenix Children’s Hospital and Pune, India
University of Arizona College of Praveen K. Goyal
Medicine—​Phoenix
Consultant Paediatrician
Phoenix, AZ, USA
Department of Community
Elaine Burfitt Paediatrics
Consultant Community Paediatrician Oxford Children’s Hospital
& Named Doctor for Safeguarding Oxford, UK
Children Emily Harrop
Department of Community
Consultant in Paediatric Palliative
Paediatrics
Care & Medical Director
Salford Care Organisation
Helen & Douglas House
Northern Care Alliance NHS
Honorary Consultant Oxford
Foundation Trust
University Hospitals NHS Trust
Salford, UK
Oxford, UK
Robert Chapman
Usha Kini
Consultant Child and Adolescent
Associate Professor
Psychiatrist
University of Oxford
Oxfordshire CAMHS NDC Pathway
Consultant Clinical Geneticist
Oxford Health NHS
Oxford Centre for Genomic
Foundation Trust
Medicine
Oxford, UK
Oxford University Hospitals NHS
Srinivas Gada Foundation Trust
Consultant Paediatrician Oxford, UK
in Neurodevelopment and
Neurodisability
xvi Contributors

Olaf Kraus de Carmargo Ashish S. Ranade


Associate Professor Consultant Orthopaedic Surgeon
Department of Paediatrics Blooming Buds Centre for Pediatric
McMaster University Orthopaedics
Hamilton, ON, Canada Deenanath Mangeshkar Hospital
Maharashtra, India
Mike Merzenich
Professor Emeritus Marie Reilly
University of California Instructor and Attending
San Francisco Developmental-​Behavioral
Chief Scientific Officer Pediatrician
Posit Science Founder & President Department of Pediatrics, Division
Brain Plasticity Institute of Developmental Medicine
University of California Harvard Medical School, Boston
San Francisco Children’s Hospital
Boston, MA, USA
Waheeda Pagarkar
Consultant in Audiovestibular Jenefer Sargent
Medicine Consultant Paediatrician and
Department of Audiology Speciality Lead, Neurodisability
University College London Neurodisability Service, Department
Hospitals and Great Ormond Street of Neurosciences
Hospital Great Ormond St Hospital for
London, UK Children
London, UK
Vijay Palanivel
Consultant in Paediatric Doug E. Simkiss
Neurodisability Medical Director and Deputy Chief
The Children’s Trust Executive
Tadworth, UK Birmingham Community Healthcare
NHS Foundation Trust
Jeremy Parr Birmingham, UK
Professor in Paediatric
Neurodisability, Neurodevelopment Martin Smith
and Disability Team Consultant Paediatric Neurologist
Sir James Spence Institute, Royal Department of Paediatric
Victoria Infirmary and Newcastle Neurology
University John Radcliffe Hospital
England, UK Oxford, UK
Sithara Ramdas Neil Wimalasundera
Consultant Paediatric Neurologist Consultant in Paediatric
and Honorary Senior Lecturer Neurodisability and Rehabilitation
Department of Paediatric Victorian Paediatric Rehabilitation
Neurology Service
John Radcliffe Hospital Royal Children’s Hospital
Oxford, UK Melbourne, Australia
xvii

Symbols and abbreviations


% cross-​reference CDR Child Death Review
2 important CDRM Child Death Review Meeting
0 warning CDT child development team
M website CGH comparative genomic
♀ female hybridization
♂ male CHARGE choanae, heart, anal, growth,
and ear anomalies
AABR automated auditory brainstem
response CIN child in need
AAC augmentative and alternative CMA chromosomal microarray
communication CMAP compound motor action
ABR auditory brainstem response potential
AC air conduction CMV cytomegalovirus
ACE adverse childhood experience CNS central nervous system
ACP advance care plan CP cerebral palsy
AD autosomal dominant CSA child sexual abuse
ADD attention deficit disorder CSC children’s social care
ADHD attention deficit hyperactivity CSE child sexual exploitation
disorder CT computer tomography
ADOS Autism Diagnostic CVI cerebral visual impairment
Observation Schedule DA domestic abuse
AFO ankle–​foot orthosis DCD developmental coordination
AHT abusive head trauma disorder
ANSD auditory neuropathy spectrum DLD developmental learning
disorder disorder
AOAE automated otoacoustic DGE delayed gastric emptying
emissions DLA disability living allowance
AR autosomal recessive DMD Duchenne muscular dystrophy
ASD autistic spectrum disorder DS Down syndrome
BC bone conduction DSH deliberate self-​harm
BCG bacillus Calmette–​Guérin DSM-​5 Diagnostic and Statistical
BMD Becker muscular dystrophy or Manual of Mental Disorders,
bone mineral density fifth edition
BMI body mass index DXA dual-​energy X-​ray
C&YP children and young people absorptiometry
CAMHS child and adolescent mental ECG electrocardiogram
health services ED eating disorder
CBT cognitive behaviour therapy EEG electroencephalogram/​
CCE child criminal exploitation electroencephalography
CCG clinical commissioning group EHC Education, Health and Care
cCMV congenital cytomegalovirus EMG electromyogram/​
electromyography
CCN children’s community nurse
EPO Emergency Protection Order
CD conduct disorder
EYSENIT Early Years special educational
CDC child development centre needs inclusion team
CDOP Child Death Overview Panel FBC full blood count
xviii Symbols and abbreviations

FGM female genital mutilation NF2 neurofibromatosis type 2


FII fabricated or induced illness NHSP newborn hearing screening
FISH fluorescent in situ hybridization programme
FMS Functional Mobility Scale NICE National Institute for Health
and Care Excellence
GDD global developmental delay
NICU neonatal intensive care unit
GI gastrointestinal
NSPCC National Society for the
GMDS-​ER Griffiths Mental Prevention of Cruelty to
Developmental Scales–​ Children
Extended Revised
OCD obsessive–​compulsive
GMFCS-​E&R Gross Motor Function disorder
Classification System—​
Expanded and Revised ODD oppositional defiant disorder
GMFM Gross Motor Function OFC occipitofrontal circumference
Measure OME otitis media with effusion
GOR gastro-​oesophageal reflux OSA obstructive sleep apnoea
GP general practitioner OT occupational therapist
H2RA histamine type 2 receptor PCHI permanent childhood hearing
antagonist impairment
HINE Hammersmith Infant PCR polymerase chain reaction
Neurological Examination PICU paediatric intensive care unit
HKAFO hip–​knee–​ankle–​foot orthosis PKAN pantothenate kinase-​
HL hearing loss associated neurodegeneration
HV health visitor PKU phenylketonuria
ICC initial case conference PPO Police Protection Order
ICD-​11 International Classification of PSG polysomnography
Disease, eleventh revision PT physiotherapist
ICF International Classification RCPCH Royal College of Paediatrics
of Functioning, Disability and Child Health
and Health
SD standard deviation
ID intellectual disability
SEGA subependymal giant cell
IEM inborn error of metabolism astrocytoma
Ig immunoglobulin SEN special educational needs
IQ intelligence quotient SEND special educational needs and
KAFO knee–​ankle–​foot orthosis disabilities
LD learning disability SHUEE Shiners Hospital Upper
LRTI lower respiratory tract Extremity Evaluation
infection SIDS sudden infant death syndrome
MASH Multiagency Safeguarding Hub SIGN Scottish Intercollegiate
MCAD medium-​chain acyl Guidelines Network
dehydrogenase deficiency SLT speech and language therapist
MDT multidisciplinary team SMA spinal muscular atrophy
MELAS myopathy, encephalopathy, SMART Specific, Measurable,
lactic acidosis, and stroke Achievable, Relevant, and
MERRF myoclonic epilepsy with ragged Time specific
red fibres SNHL sensorineural hearing loss
MPS mucopolysaccharidosis SPD sensory processing disorder
MRC Medical Research Council SPECT single-​photon emission
MRI magnetic resonance imaging computed tomography
nAHT non-​abusive head trauma SSRI selective serotonin reuptake
inhibitor
NF1 neurofibromatosis type 1
Symbols and abbreviations xix

SUDC sudden unexpected death in TORCH toxoplasmosis, other (syphilis,


childhood varicella zoster, parvovirus
SUDI sudden unexpected death in B19), rubella, cytomegalovirus,
infancy and herpes simplex virus
T&A tonsillectomy and TS tuberous sclerosis
adenoidectomy UN United Nations
TBI traumatic brain injury VI visual impairment
TLSO thoracolumbar sacral orthosis XLR X-​linked recessive
1
Chapter 1

Working with child


and family
Communication with children 2
Child-​and family-​centred care 4
Child development teams 6
Child development centres 10
Interdisciplinary working 12
Difficult conversations 16
Effects of illness and disability on family 18
Using the ICF as a framework for family-​centred
collaboration 20
Providing information, support, and advice 22
Care of siblings 26
Shared decision-​making and goal setting 28

Do what you can, with what you have, where you are.
Theodore Roosevelt, 1858–​1919
2 Chapter 1 Working with child and family

Communication with children


Fundamental principles for communicating
with young people
• Awareness of the cultural and social background of children and their
families.
• Being non-​judgemental, respectful, and fair.
• Acknowledging their rights to equality and diversity.
• Understanding that communication is a two-​way process.
• Patient listening to encourage their feeling of participation,
empowerment, and respect.
• Using clear common language without technical words or jargons.
• Realization of the importance (and effect) of non-​verbal communication
(facial expression, tone of voice, body language, etc.) on children.
• Offering information to children and young people (C&YP) in a way to
match their level of understanding.
• Use of real-​life situations to put information in the right perspective.
• Frequently checking their understanding through discussion, and
summarizing key points at the end of the meeting.
• Offer to talk to young people, especially teenagers, separately from
their parents and deciding together how to involve parents or carers in
decision-​making process.
• Asking open questions to widen the topic of discussion and encouraging
expression of their feelings.
• Use of multisensory methods of communication such as drawing and
models to get important and complicated information across.
• Presenting genuine choices and options in decision-​making process.
Techniques of communicating with children
Verbal
• Use of ‘I’/​‘me’ instead of ‘you’.
• Third-​person technique, e.g. ‘Sometimes when someone is hurt, they
are angry or sad. Do you sometimes feel like that?’
• By being non-​judgemental and legitimizing their feelings, e.g. ‘It is
sometimes OK to feel hurt’.
• Story telling—​telling two stories with different outcomes.
• ‘What if ’ question—​by encouraging the child to use alternative options
to deal with a different situation.
• ‘What would you ask if you have three wishes?’ may help in exteriorizing
a child’s feelings and help in establishing rapport.
• Using a rating scale, e.g. ‘How will you rate tummy ache on a scale of
1 to 10?’
Non-​verbal
• Writing—​feelings or thoughts, keeping a diary.
• Drawing.
• Play—​spontaneous play with ordinary toys or directed play, e.g. to
involve them in imaginative play.
• Use of models to explain complicated topics.
Communication with children 3

Communicating with children at different ages


Infants
• Mainly non-​verbal, vocalization, cuddle, and careful handling.
• Beware of stranger anxiety.
Early childhood
• Focus on individual child.
• Personalize experience to them.
• May prefer to touch and feel examination equipment.
• Concrete thinking—​avoid abstract concepts or language.
School-​age children
• Want straight explanations and reasons for everything, but would be
happy to accept if given in simple language.
Adolescents
• Respecting their views.
• Respect privacy and right to confidentiality (except if safeguarding or
other serious issues involved).
• Undivided attention and good listening.
• Keeping an open mind and staying calm.
• Avoid judging.
Barriers to effective communication
• Defending a situation or opinion.
• Stereotyped comments and clichés.
• Direct/​close-​ended questions from the start.
• Interfering and finishing other’s sentences.
• Talking more than listening.
• Frequent change of topic/​focus.
Clues/​signs of poor communication
• Long periods of silence.
• Constant fidgeting.
• Tapping, playing with hair.
• Looking around, yawning.
Difficult communication
See E pp. 212–14 and pp. 216.
4 Chapter 1 Working with child and family

Child-​and family-​centred care


• During the latter half of the twentieth century, there has been a growing
understanding of the family’s role in a child’s life. It is recognized
that each family is unique and family members are the experts and best
advocate of a child’s needs.
• Family-​centred care puts children and their families at the heart of care
provisions and is a significant shift from the traditional biomedical model
of care which focuses on biological rather than social and emotional
aspects to deal with the disease process.
Why is child-​and family-​centred care important?
• To empower family to become the experts for their child.
• To manage child’s condition on day-​to-​day basis.
• To meet child’s developmental needs.
• To meet sibling’s developmental needs.
• To feel comfortable in sharing ongoing stress and periodic crises.
• To assist family members in managing their feelings.
• To educate and inform others about the child’s condition.
• To establish a support system.
Key principles of child-​and family-​centred care
• Recognition that family occupies a central and constant position in a
child’s life.
• Acknowledging that family members are the experts about a child’s
condition and that they are the best advocates of a child’s needs.
• Family–​professional collaboration at all levels of healthcare,
professional education, policymaking, and programme development to
optimize care.
• Effective communication and negotiation of care.
• Recognizing and building on the strengths of each child and family, even
in difficult and challenging situations.
• Empowering each child and family by free exchange of information
backed by professional support to ensure their involvement in decision-​
making process.
• Recognition and respect for cultural, racial, and social diversity.
• To fit various support services around the child’s and family’s needs
rather than to suit care provider’s convenience.
• Encouraging networking and family-​to-​family support to facilitate
learning from each other’s experience.
Advantages of child-​centred and family-​focused care
• Greater patient, family, and professional satisfaction.
• Improved patient and family outcome.
• Decreased healthcare costs.
• More effective use of healthcare resources.
Child- and family-centred care 5

Example of child-​and family-​centred care


Harry is a 2-​year-​old boy seen in clinic for developmental delay. On as-
sessment it became clear that he has autism with general delay in cognitive
development. His parents are distraught with this news and would like to
know about the best way forward.
They would also like to know:
• What they can do as a family to optimize his development?
• What and how to tell their family and friends?
• How can professionals help?
A family-​centred approach will involve:
• Discussion with parents (and with extended family if needed)
reflecting respect, involvement, and empowerment.
• Explaining autism with details on how it is affecting Harry rather than
discussing about a ‘typical case of autism’.
• Highlighting Harry’s unique strengths and difficulties.
• Providing the best available information (autistic spectrum disorder
(ASD) support groups, benefits, etc.) for the family to go through at
their own pace.
• Honest opinion about prognosis, leaving room for hope in view of
Harry’s young age.
• Arranging appropriate referrals to a speech and language therapist
(SLT), occupational therapist (OT), Early Years special educational
needs inclusion team (EYSENIT), and social services with clear
information about who is going to be offering what.
• Clear overview of coordination and delivery of services.
• Discussions followed by written report/​letter to the referring
provider and the family containing the details of the assessment
and plan.
• Clear plan for follow-​up and information about contact prior to next
meeting if needed.
• Making yourself available for follow-​up questions that might arise
shortly after disclosure of diagnosis.
6 Chapter 1 Working with child and family

Child development teams


In 1976, Donald Court’s report, commissioned by the British government,
drew particular attention to service provisions for children with disabil-
ities and recommended creation of a district team which should include a
number of professionals providing multidisciplinary support.
Child development team (CDT)
• A secondary level service provision for children with
neurodevelopmental disability, providing interdisciplinary assessment
and support in a local health district.
• Provides a cohesive service ideally from a common location.
• Makes sure that service provisions are responsive to the individual needs
of families and children.
• Usually serves preschool children.
Functions of a CDT
• Specific assessment and therapy.
• Information about specific conditions and about disabilities in general.
• Emotional support.
• Link with other families with similar conditions.
• Easy access to other agencies such as education.
• Prompt, efficient supply and repair of equipment.
Structure and composition of a CDT
• Can vary but usually include staff from healthcare, education, and social
care (Fig. 1.1).
• It usually includes the following:
• Community paediatrician/​developmental paediatrician.
• Clinical (or educational) psychologist.
• SLT.
• OT.
• Physiotherapist (PT).
• Preschool teacher/​Portage worker/​EYSENIT.
• Social worker.
• Specialist health visitor (HV)/​key worker.
• Audiologist.
• Allied disciplines, e.g. orthoptist, child psychiatrist, dietician, dentist,
play specialist, etc.
Assessment by a CDT
• Assessment may take place jointly at a central facility (child development
centre (CDC)) but is more commonly performed at different times by
individual team members (aka a ‘virtual team’).
• Some teams may also assess children at a variety of sites outside the
CDC including local nurseries, educational units, and at home.
• Team meetings and discussions form the core of the CDT to facilitate:
• Coordination of appropriate service provisions and to avoid
duplication (case management).
• Discussing new referrals to plan and coordinate future assessments.
• Reviewing policy and team organizations.
Child development teams 7

Paediatrician
Clinical
Psychologist
SLT

Psychiatrist

OT

Child and
Admin family
officer

PT

Social worker
Early years
Children support
nurse/play
specialist Dietician

Fig. 1.1 Child development team.

• In-​service training, audit, etc.


• Combined health, educational, and care needs of children attending
special schools can be discussed in interdisciplinary school meetings.
• Information obtained during the assessment process is shared with the
parents and (other) professionals working with the child.
• A detailed written report is provided to parents at the end of
assessment and shared with partner agencies with parental consent.
Advantages of a CDT
• Detailed interdisciplinary assessments identify needs enabling
appropriate service provisions.
• Seamless communication between various professionals/​disciplines.
• Avoidance of duplication of assessment with improved coordination.
• Team members learning from each other (transdisciplinarity).
Disadvantages of a CDT
• Risk losing an overview of the child if not coordinated well.
• Lack of accountability and responsibility.
• Dual accountability of practitioners to the team and their line manager
with potential for conflict.
• Excluding older children and those without multiple needs who may still
benefit from CDT input.
• Risk of becoming CDT centred rather than family centred.
8 Chapter 1 Working with child and family

Changing face of a CDT


• Move from ‘expert’ model to ‘empowerment’ model.
• Parental expectation and better access to information.
• Changing role of therapists with more parental involvement and
enablement in therapeutic interventions.
• Focus on participation (what matters to the child and the family?).
• Shared decision-​making and goal-​setting.
Child development teams 9
10 Chapter 1 Working with child and family

Child development centres


Some CDTs operate from a base while others gather at different locations
to meet.
Advantages of a CDC
• Better communication and coordination of services.
• Purpose-​built facilities and co-​location of various support services.
• Recognizable point of contact for families and other professionals.
• Can be used for health promotion activities.
• Can be used as a base to provide various resources by other
professionals and local community, e.g. Down syndrome (DS) support
group meetings, parenting programmes, early bird courses for ASD, etc.
Disadvantages of a CDC
• Risk of isolation from families and local services.
• Increasing wait times due to bottlenecks.
Children likely to benefit from CDT/​CDC input
Those with:
• Cognitive disorders (see E p. 420).
• Learning disabilities/​intellectual disabilities (see E pp. 136–41).
• Gross motor impairment:
• Cerebral palsy (CP) (see E pp. 92–101).
• Neuromuscular disorders (see E pp. 272–6).
• Chronic neurological conditions, e.g. post meningitis, brain
malformations, survivors of severe head injury (see E pp. 108–9).
• Fine motor difficulties:
• Developmental coordination disorder (DCD)/​dyspraxia (see E
pp. 146–9).
• Speech, language, and communication disorders:
• Severe language disorder (see E pp. 402–3).
• ASD (see E pp. 114–25).
• Paediatric feeding disorder.
• Visual impairment (see E pp. 202–8).
• Hearing impairment (see E pp. 170).
• Any of the above-​listed conditions with associated behavioural
disorders.
Child development centres 11
12 Chapter 1 Working with child and family

Interdisciplinary working
• Children with complex needs and their families require support from
multiple agencies. Families can sometime get overwhelmed with
multiplicity and duplication of input if these agencies work in isolation.
• Various professionals involved may represent public, private,
or voluntary organizations. It is crucially important for various
professionals, often working across different agencies, to work together
in order to meet the family’s needs in an effective and efficient manner
(see E p. 675).
• Multiagency support can be provided in the form of team around a child
model or by assembling multiagency teams or panels.
Advantages of interdisciplinary working
• Effective and efficient provision of services with improved quality of care.
• Better coordination with minimization of duplication of assessments and
support, therefore increasing cost effectiveness.
• Beneficial for families by reducing the number of different agencies they
have to deal with.
• Key worker or coordinator can provide easy point of access.
• Improving skills of professionals by working together and learning
from each other, e.g. joint home visit by preschool teacher and various
therapists (transdisciplinarity).
• Increases patient’s and family’s satisfaction.
Skills required for interdisciplinary team working
• Good communication skills.
• Willingness to work with others along with commitment to team
process to help children and families.
• Ability to listen and see other’s perspective.
• Have mutual respect and trust other team members.
• Understanding of partner agencies’ working.
Key principles which underline successful interdisciplinary working
• General knowledge and understanding of the range of organizations and
individuals working with C&YP.
• Knowledge and appreciation of common principles and procedures of
joint working including those for consent, assessment, confidentiality,
and information sharing.
• Clarity about individual roles along with respect and value for other’s
contribution.
• Effective communication with appropriate information sharing, avoiding
jargon and abbreviations.
• Being proactive and assertive to be able to make significant
contributions.
• Confidence to challenge situations by asking considered questions.
• Putting children and their families at the centre of decision-​making process.
• Common language of terminology (e.g. use of International
Classification of Functioning, Disability and Health (ICF) terminology).
• Awareness of the partner agencies’ policies and working practices.
Interdisciplinary working 13

• Co-​location of services.
• Joint budgetary control if possible.
Potential disadvantages of multiagency working
• Lack of responsibility and accountability. This can be overcome by
appointing a coordinator or key professional who can liaise with other
professionals.
• Potential to confuse families and young people about whom to contact
during times of specific needs. This can be overcome by appointing one
team member as a key person for the family to connect.
• Time and resource intensive.
Barriers to effective multiagency working
• Poor communication and information sharing.
• Differences in organizational aims.
• Lack of support and commitment from senior management.
• Constant reorganization.
• Frequent staff turnover.
• Financial uncertainty.
• Different professional ideologies and agency cultures.
Example of an interdisciplinary team
See Fig. 1.2.

Paediatrician

Child
Therapists Social
(SLT, PT, OT)
and worker
family

Psychologist

Fig. 1.2 Example of an interdisciplinary team.


14 Chapter 1 Working with child and family

Interdisciplinary team process


• Rather than working as a single discipline or as different multiple
disciplines, the biopsychosocial approach in developmental care requires
interdisciplinary collaboration, prioritization, and person-​centred goal
setting and outcomes.
• Professionals need to understand the child’s and family’s activity
limitations, participation restrictions, as well as the barriers and
facilitators of environmental factors to gain a broader understanding of
the child’s health in context.
• Interdisciplinary process emphasizes the team’s responsibility to move
beyond siloed professional paradigms and highlights the need for a
diverse team of healthcare, education, and social care professionals.
See Fig. 1.3.

Multiple
disciplines or
interdisciplinary
approach

Identify
disciplines, role,
and their
availability

Coordination, outcome,
and evaluation

Fig. 1.3 Interdisciplinary team process.


Interdisciplinary working 15
16 Chapter 1 Working with child and family

Difficult conversations
You will often come across the term ‘breaking bad news’. Consider that
‘bad’ is a judgement and some conditions or diagnoses that you might feel
are not so bad from a clinician’s perspective, actually might be devastating
for parents. It can also happen that a topic you expected to be devastating
might provide a long-​sought clarification and closure to parents. Always
be prepared that conversations might become difficult—​for both family
and health professionals. The following are some suggestions to consider.

Briefing
• Gather all medical information available and the timeline related to it.
• Gather information about the child and family from all team members.
• Discuss with the team why you think this conversation might be
difficult—​what are the expectations of the family?
• Prepare for different scenarios after the conversation—​which supports
might be required and how can it be ensured that they are available?
Setting the scene
• The most senior person who knows the family best should give the news.
• Collect appropriate information, anticipate likely questions, and prepare
answers.
• Make sure there is no interruption during the consultation.
• Keep a box of tissues, drinking water, etc. in the room.
• This should be a sitting down, face-​to-​face conversation.
• Preferably both parents should be present. Suggest inviting a relative or
friend especially for single parents for support.
Consultation
• Introduce yourself if you are not already known, and address the child
by name.
• Establish what is already known to the family.
• Gently build up before delivering the bad news, e.g. ‘As you are aware,
Jack had an MRI scan of his brain. I am afraid it is not normal’.
• Avoid jargon and speak at a pace the family can understand.
• Be honest and straight to the point.
• Reassure them that everything that needs to be done is being done.
• Don’t promise anything you are not sure you can deliver.
• Be sensitive to a parent’s reaction.
• Provide plenty of time and opportunities for asking questions.
• Be willing to repeat information if necessary.
• Give a clear plan of action and follow-​up.
• Provide contact details to the family for further questions if necessary.
• Offer to share information with the child or others involved in the
child’s care.
• During an interdisciplinary assessment/​briefing, offer to speak to the
parents privately prior to a joint meeting with other team members.
Difficult conversations 17

Follow-​up
• Write to the family to supplement verbal discussion.
• Offer a follow-​up appointment to meet the family.
Debriefing with team
• What have we learned that we did not know before?
• What needs to be documented in the chart so everyone is on the same
page and re-​traumatizing the family can be avoided?
• How is everyone doing? Are there any needs for support within the
team?
Common scenarios—​includes giving diagnosis of
• CP (see E pp. 92–101).
• Autism (see E pp. 114–25).
• Developmental testing revealing global developmental delay (GDD) (see
E p. 30).
• Genetic investigations, e.g. MECP2 mutation detection confirming Rett
syndrome (see E pp. 518–19).
• Lab confirmation of an Inborn Error of Metabolism (IEM) (see
E pp. 150–1) etc.
18 Chapter 1 Working with child and family

Effects of illness and disability on family


• The life of families with members affected by chronic illness or disability
is often perceived as extremely burdened and suffering.
• Health economists have even come up with the term ‘burden of
disease’ and try to calculate it. This position is easily perceived as ableist.
• As clinicians, we need to realize that the chronic condition or disability is
part of the life of our patients and their families.
• We cannot assume, but we need them to feel comfortable to let us
know if they feel burdened.
• Consider what can be done to alleviate this burden, if that is the case.
Causes of increased number of families impacted by chronic
illness and disability
• Better survival of extremely premature neonates and those born with
birth defects.
• Early intervention with longer life span for some of the babies with
treatments previously not offered, e.g. cardiac surgery for children with
DS (see E pp. 499–500).
• Better awareness and early identification of conditions such as autism
(see E p. 114).
• More children with disabilities are now living at home and attending
mainstream schools.
Potential risks of disability for the family
A child’s impairment can affect the entire family’s well-​being by:
• Feelings of guilt, blame, and reduced self-​esteem which may either lead
to rejection or overprotection of the affected child.
• Limiting and interrupting family activities.
• Feeling of helplessness due to lack of information and awareness of
service provisions.
• Consuming large majority of parental time, energy, and attention.
• Relative neglect of siblings and other family member’s needs (see
E pp. 26–7).
• Poor peer activities and cognitive development in siblings.
• Affecting family income due to parents taking time off or leaving jobs.
• It can be a source of parental emotional distress and mental health
problems affecting relations and living arrangements (see E p. 365).
• Social isolation from peers and neighbours due to perceived stigma
attached to disability.
Potential positive effects of disability
Having a disabled child can be a unique family experience which may also
have the following positive effects:
• Enhance family cohesion and encourage links with community groups.
• Increase awareness of inner strength.
• Reframe values and priorities.
• Acquire new perspectives on society and its diversity.
• Become an expert and advocate for other children and families.
Effects of illness and disability on family 19

Minimizing the negative effects of disability


To achieve this, health professionals need to adopt a family-​centred approach
(see E p. 4). Families caring for children with disabilities can be helped by:
• Addressing their (child and family’s) complex medical, developmental,
educational, social, emotional, recreational, and care needs.
• Informing families about the range of services required for a particular
child (see E p. 68).
• Arranging required services locally as much as possible.
• By understanding and supporting families through the grieving process
(see E p. 481).
Sources of support
• Acute and primary healthcare services to manage long-​term conditions,
e.g. children’s community nurse (CCN) (see E p. 681), therapy
services (see E Chapter 7), etc.
• Social services for financial support, respite, and home adaptations (see
E pp. 682–3), etc.
• Education services for providing special educational needs (SEN)
provisions (see E pp. 656–8).
• Voluntary organizations (see E p. 684).
• Parent support groups.

Further resources
Carers Trust: M http://​www.carers.org
Sibs: F 01535 645453; M http://​www.sibs.org.uk
20 Chapter 1 Working with child and family

Using the ICF as a framework for


family-​centred collaboration
• The ICF can serve as a way to remind us of all the components that
contribute to a healthy participation of an individual.
• The ICF allows us to capture the classic biomedical findings that interact
with the usual domains of the life of our patients and the relevant
environmental factors that can be acting as barriers or facilitators to
such a participation.
• An easy way to introduce this framework is using the ‘F-​words’ (Fun,
Family, Function, Friends, Fitness, and Future) approach developed at
CanChild (M https://​canch​ild.ca/​en/​resea​rch-​in-​pract​ice/​f-​words-​in-​
childh​ood-​dis​abil​ity).
Even in a fast-​paced clinic, it might be helpful to have a ‘snapshot’ of each
patient with the main relevant aspects to their functioning:
• Personal factors (‘Fun’): who are you? What kind of personality do
you have (timid, shy, gregarious, risk-​taking, etc.)? What makes you
experience fun?
• Environmental factors (‘Family’): with whom do you live? Where do you
go to school? What is helpful in your life and what not so much? Do you
receive any therapies/​treatments? Are you on waiting lists?
• Activities (‘Function’): what activities are you able to do, and which ones
are restricted?
• Participation (‘Friends’): what do you like to do with friends? Do you
prefer to be inside or outside? What are your favourite pastimes? Do
you experience any limitations?
• Body functions and structures (‘Fitness’): what can you do to keep yourself
fit? What body impairments do we need to be aware of?
• And ‘Future’: what are your next steps and goals?
This framework is also being used to discuss and make decisions about
relevant therapy goals using the F-​words goal sheet (M https://​canch​ild.ca/​
sys​tem/​tenon/​ass​ets/​atta​chme​nts/​000/​003/​061/​origi​nal/​FWords​Goal​
Shee​t_​Ma​y1_​2​020.pdf ).
USING THE ICF AS A FRAMEWORK 21
22 Chapter 1 Working with child and family

Providing information, support,


and advice
There was no substitute for real people, written information is nice to have
as a comfort factor, but you really get your information from people, talking
face to face with them.
Parent with a child with learning disabilities
You could talk to her about anything, and she was really good. She knew
people who could help you if you were stuck, or would say ‘well, you could
try this, or that, or something else’.
Parent of a child with learning disabilities

Living with a disabled child presents a number of challenges even for more
resourceful and well-​informed parents. It is a juggling act, balancing rou-
tine parenting tasks with treatment programmes and additional physical and
emotional demands (see E pp. 364–5).
Adequate information is crucial:
• To understand the impact of disability on family life.
• To facilitate adjustment to disability.
• To empower parents—​helps in coping and transitions.
• Non-​directive information can be valuable during periods of crises.
Settings
Exchange of information can take place:
• In a multidisciplinary case conference.
• During a home visit.
• At an outpatient/​school clinic.
• During a hospital admission on the ward.
• Over the telephone or by email.
• In the form of a clinic letter.
Types of information
• New diagnosis: provide information about the condition, its
complications, long-​term outcome, etc.
• Information regarding various management options.
• About engaging other professionals for further assessment/​support (see
E p. 675).
• About local and national support agencies, e.g. voluntary organizations
and charities such as Scope for CP (see E p. 684).
• For support from statutory agencies (e.g. statutory assessment for SEN
(see E pp. 656–8) and Disability Living Allowance (DLA)).
• To inform about local support groups for parents, e.g. local DS groups
for a child newly diagnosed with DS (see E p. 23).
• Internet-​based resources, e.g. ERIC (The Children’s Bowel & Bladder
Charity) for incontinence (see E p. 311).
Ways in which families receive information
• Personal communication with professionals:
• Most frequent and highly valued mode of information.
Providing information, support, and advice 23

• Verbal information supported by written/​printed material helps to


reinforce the message delivered during consultations.
• Direct contact with other parents and voluntary organizations.
• Locally produced booklets (rather than general publications) are more
relevant and better appreciated by families.
Advantages of appropriate and timely information
This enables parents to:
• Access suitable services and benefits.
• Enhance management of their child’s condition and behaviour.
• Plan, prepare, and hence feel more in control.
• Link with support agencies to adjust emotionally to their child’s
disabilities and reduce the feeling of isolation.
Type of support needed by families with children with
complex needs
Information
• About long-​term outcome, treatment options, prognosis, and its impact
on family life (see E p. 22).
• About condition-​specific support groups via Contact (previously
Contact a Family) directory.
• Benefits, allowances, equipment, and details of local agencies (see
E p. 675).
Education
• Acknowledgement and understanding of child’s difficulties in educational
setting while promoting inclusion. Children’s community nurses (CCNs)
(see E p. 681) and school nurses (see E p. 679) play a valuable role in
support.
• Good ongoing liaison between parents, school, and health services.
• Identification and provision for SEN—​equipment and medications.
• Home teacher or home-​school link worker for prolonged periods of
absence secondary to illness (see E pp. 668–9).
• Special school provisions and support from specialist advisory teachers
if necessary, e.g. autism advisory teacher or specialist teacher for visual
(see E p. 207) or hearing impaired (see E p. 196).
• By providing transition programmes and specialized job training during
teenage years (see E p. 471).
Financial support
• Allowances and benefits (see E p. 675).
• Home adaptation (see E pp. 392–3).
Social and emotional support
• Directing parents and siblings to local support agencies and advocacy
groups (see E p. 19) to share information and meet other families
affected with similar condition (e.g. autism family support).
• Respite care including support for siblings and parents (see E p. 675).
• Support from extended family and friends.
• Psychological support from counsellors and family therapy (see
E p. 367).
• Spiritual support from faith leaders.
24 Chapter 1 Working with child and family

Support for practical issues


• Good liaison between hospital and community teams for issues such
as home oxygen, suction, specialized bed, mobilization devices, feeding
pumps, etc.
• Training of parents and other carers for managing specialized
procedures such as gastrostomy feeding (see E p. 442), administering
rescue medications such as buccal midazolam, managing a Hickman
line etc.
• Details of continuing supplies such as oxygen, medications, and other
consumables.
• Contact details of key worker, link professional, and members of
interdisciplinary/​multiagency teams (see E p. 14); arrangement of
open access at local paediatric unit etc.

Further resources
Contact (Previously Contact-​a-​Family): M https://​contact.org.uk/​
Council for Disabled Children: M https://​councilfordisabledchildren.org.uk/​members/​meet-​our-​
members/​parents-​inclusion
Parent Champions: M http://​www.parentchampions.org.uk/​resources/​
Scope: M http://​www.scope.org.uk
Another random document with
no related content on Scribd:
Charmes, M., contributor of Débats, 355.
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K.C.B., 219; suffers from his eyes, 219; the British Legation, 221; ‘The
Wilderness,’ 223; his summer residence, 224; acts of kindness, 226; third
mission to Marákesh in 1863, 230; at Rabát, 230; on the exchange of
Gibraltar for Ceuta, 233; at Fas, 236; audiences of the Sultan, 238;
proposed reforms, 238; Minister Plenipotentiary, 264; fourth mission to
Marákesh in 1872, 264; legend of the falcon, 267; enters Marákesh, 269;
dinner with Sid Musa, 272; the menu, 273; his final interview with the
Sultan, 276-282; entry into Mogador, 284; crossing the bar at Saffi, 286;
expedition to the Atlas mountains, 289; mission to Fas in 1875, 307;
proposes various reforms, 314, 317; reception by Sultan Mulai Hassan,
315; at the feast of the Mulud, 316; on the Sahara scheme, 317; his annual
holidays, 318; on the crisis in Turkey, 319; on Sir H. Layard’s appointment,
320; on the question of Protection, 321; famine, 324; cholera, 325; the
quarantine regulations, 325; illness of his son, 327; third mission to Fas in
1879, 329; interview with Uzir Mokhta, 330-333; reforms agreed to, 334;
promoted to the rank of Envoy Extraordinary, 335; letters from M. Tissot,
336; failure of his project for the exportation of grain, 339; at Marákesh,
340; on the state of Morocco, 344, 347; on the relations between France
and Morocco, 345, 349; charges against him, 346; interview with Lord
Granville, 350; G.C.M.G. conferred, 350; exoneration in the House of
Lords, 350-353; his impression of M. Féraud, 354; weariness of his work,
356; on the system of slavery, 357; prison reform, 358; fails to obtain a
revision of the Commercial Treaty, 360; delight at leaving, 360; letter from
the Sultan’s Prime Minister, 361-363; Privy Councillor, 363; accounts of
boar hunts, 366-389; introduces pigsticking, 373; hunting a lion, 390;
death, 397.
—, Mr. E. A. Drummond, 1, 5, 28, 293; appointed Political Agent and Consul-
General in Morocco, 6; his mission to Marákesh, 66; illness and death, 68.
—, Mr. R. Drummond, 293, 296; consul at Mogador, 324; illness, 327.
—, Mr. R., 8.
—, Mr. R. W., 139.
—, Mrs., 4.
—, Mrs. R. Drummond, 237, 328.
—, Miss, 237, 240, 312; extracts from her diary, 284, 289; received by the
Sultan, 342.
—, Miss A., 266.
—, Louisa, 9.
Hiazna, Governor of, 72.
‘Hill,’ the, 224.
Hitchcock, Major, 296.
Hodges, Colonel, 21, 24.
Hooker, Sir Joseph, letters from Sir J. D. Hay, 264, 318, 324.

Ibdaua, Sheikh of, 87.


Ibrahim Pasha, 30.
Isly, battle of, 79.

Jamah Makra village, 390.


Jebar, the Khalífa of Wazan, 345.
Jebel Habíb hills, 371.
Jebel Kebír, 207 note, 224.
Jebel Musa, 224.
Jebíla hills, 105, 269.
Jelab, torture of the, 186 note.
Jewesses, the, 129, 271; dress, 130, 271.
Jews, the, of Morocco, 125, 271; number of, 129; despotic rules, 130; oath,
131.
Jin, or evil spirit, 389, 391.
João, the Portuguese Gunsmith, story of, 241-263.
Joinville, Prince de, 67, 68.
José, Don, 101.
José Maria, the famous brigand, 11; account of his pardon, 12; his robberies,
13; his horse, 14; his death, 15.
‘Journal of the Society for Psychical Research,’ extract from, 327.
Judah Azalia, 126; his memorandum about the Jews, 127-129.
Judah El Hayugni, 129.
Kab ghazal, or gazelle hoofs, 273.
Kaddor, 109.
Kaid Abbas Emkashéd, 161.
Kaid Abd-el-Kerim, 77, 109; his account of the battle of Isly, 79-81.
Kaid Ben Abu, 78, 98.
Kaid Ben Tahir, Governor of Azamor, 169.
Kaid Bu Aiesh, 269.
Kaid ‘Bu Jebel,’ 78.
Kaid-el-Meshwa, or High Chamberlain, 216.
Kaid Erha, meaning of the term, 265.
Kaid E’Susi, 96.
Kaid Maclean, 327.
Kaid Madáni, 112.
Kaid Maimon and the lion, 303-306.
Kaid Meno, theft of a horse, 308-311.
Kaid Serbul, 87.
Kasba Faráo, 214.
Kasba Jedída, 342.
Kenneth III, King of Scots, 267.
Khamás mountains, 158.
Kholj river, 85.
Kinnoull, Earl of, 1, 5.
Kubbats E’Suiera, or the ‘Picture Cupola,’ 112.
Kus, 317.
Kutubía Mosque, 106, 108, 111, 269.

‘Lab-el-barod,’ 311, 313.


Lahleh, 128.
Lalande, Admiral, 60; his message to Lord Ponsonby, 61; death, 63.
Lamarti, Selam, 17.
Lambton, Colonel, 296.
Lane, E. W., his ‘Manners and Customs of the Modern Egyptians,’ 77.
Lasakia, 129.
Lasats, 129.
Laurin, M., 27.
Layard, Sir Henry, letters from Sir J. D. Hay on the exchange of Gibraltar for
Ceuta, 233; on his reception by the Sultan, 288; on the accession of Mulai
Hassan, 307; on laying a cable, 314; appointed Ambassador at
Constantinople, 320.
Leech, 4.
Legation, the British, at Tangier, 221.
Leila predicts Sir J. D. Hay’s fortune, 17-19.
Lerchundi, Padre, 344.
Liddell, Mr., 207.
Lion and the lark, anecdote of the, 84; hunting a, 390.
Lively, H.M.S., 264, 285.
Loncarty battle, 267.
Londonderry, Lady, 36; her interview with the Sultan, 37.
Londonderry, Lord, 36.
Lorimer, Dr., 23.
Lynedoch, Lord, 1.

Maada or sedge canoe, 89, 90.


Mactavish, 49.
Madrid, conference on the system of protection in Morocco, 323.
Mahazen river, 243.
Mahmud Canal, 25.
Mahmud, Sultan, his dwarf, 40.
Maimon, the leopard, 199.
Malmesbury, Lord, 198, 353.
Marákesh, 66, 105, 108; first mission to, in 1846, 77; second mission in 1855,
169; third mission in 1863, 230; fourth mission in 1873, 264; in 1882, 340.
Marcussen, Mme., letters from Sir J. D. Hay, 138, 139.
Marseilles, 22.
Marshan plateau, 268.
Matra, James Mario, 221.
Mauboussin, M., 60.
Maule, William, 49.
Mazagan, 264, 314.
McKenzie & Co., 317.
Mehemet Ali, 24, 44.
Meknes, mission to, in 1861, 214.
Melilla fortress, 144.
Mesfíwa village, 106, 291, 292.
Meteor, the, 124.
Miranda, H.M. frigate, 148.
Mishra-el-Hashef river, 137, 239.
Mogador, Island of, 69, 123; famine in, 324.
Mohammed Ben Abdallah, Sultan, 123.
— Ben El Amrani, bastinadoed, 105.
— Gharrit, letter of farewell to Sir J. D. Hay, 361.
Mokhta, the Uzir, 329; questions of etiquette, 331; interview with Sir J. D. Hay,
332; his palace, 333.
Mona, system of, 86, 340.
‘Moorish Prince, a story of a,’ 300-303.
Moors, habits of the, 124; their reception in England, 135.
Morocco, introduction of the plague in 1826, 24; famine in, 164; decline of
trade, 167; population, 167; advantages of a Commercial Convention, 168;
ratification of the Treaty, 182; cattle-lifting, 193; punishment of, 194;
proposed loan, 214; terms of the payment, 218; final settlement, 220;
slavery in, 357.
—, Sultan of, 113, see Mulai Abderahman.
Mujáhidin or ‘Warriors of the Faith,’ 185.
Mul Meshwa, or chief Usher, 71, 112.
Mulai Abdelmalek, 241.
Mulai Abderahman, Sultan of Morocco, 71, 72, 113, 144; receives Sir J. D. Hay,
113, 118, 180; appearance and dress, 114; harem, 119; his fondness for
animals, 199, 202; death, 205.
Mulai Abderahman Ben Hisham, Sultan, 300.
Mulai Ahmed, 242, 300-303.
Mulai Ali, 129, 341.
Mulai Hashem, 129.
Mulai Hassan, Sultan of Morocco, accession, 307; reception of Sir J. D. Hay,
315, 330, 340; appearance, 315.
Mulai Ismael, 119.
Mulai Mohammed, Sultan of Fas, 241.
Mulai Sliman, 274.
Mulai Soliman, 110.
Mulai Yazid, tomb of, 110.
Mulud, feast of the, 316.
Murray, Mr. H., 68.
—, John, 4.
Murray’s Magazine, Sir J. D. Hay’s reminiscences, 367.

Napier, Admiral Sir Charles, 30, 145.


—, and Ettrick, Lord, 49, 73.
— of Magdala, Lord, 353.
Nares, Captain, 318.
Nelson, Lord, 235.
Nicolas, Commander, 218.
Nion, M. de, 68.
Norderling, Mrs., letters from Sir J. D. Hay on his reception from Sultan Mulai
Hassan, 315; on the Sahara scheme, 317.

Ofran, 128.
Ordega, M., 345; recalled, 354.
Oriental phraseology, specimen of, 361.
Orléans, Duc de, at Tangier, 203; his letter to Sir J. D. Hay, 203.
Oscar, King of Sweden, 66.

Palmerston, Lady, 75.


—, Lord, 17, 20.
Peñon fortress, 144, 148.
Pisani, Etienne, 49.
—, Mr. Frederick, Chief Dragoman of the Embassy, 31, 49, 73.
Plague, the, in Egypt, 22, 24.
Ponsonby, Lady, 33, 42, 75.
—, Lord, 25, 30, 42; his address to the Sultan, 32; entertains Bosco at dinner,
33; charm of manner, 43; his policy, 44; reply to Admiral Lalande, 63; his
letter to Sir J. D. Hay on his appointment in Morocco, 74.
Pontet, M., 44.
Poole, Stanley Lane, his ‘Life of Sir S. Canning,’ 73.
Porter, Commodore, 63.
—, Mr. George, 64.
Protection, system of, 322; Conference on, 323.

Rabát, 62, 217, 230.


Raeburn, 1.
Rahma, 247.
Ras-ed-Daura lake, 89.
Ras-el-Ain fountain, 129.
‘Ravensrock,’ Sir J. D. Hay’s summer residence, 224.
Reade, Mr., 207.
Reshid, Governor of Shawía, 171.
Reshid Pasha, 36.
Rif country, 144, 158; population, 158; inhabitants, 159.
Rifians, piracy of the, 144, 146; costume, 152; parley with Sir J. D. Hay, 153-
157; industry, 159; courage, 160; morality, 160.
Robinson and Fleming, Messrs., 220.
Roche, M., 95.
Rosebery, Lord, 360.
Russell, Lord John, 205; his defence of Sir J. D. Hay, 207.

Sabbatyon river, 131.


Saffi port, 285, 292, 314.
Sahara scheme, 317.
Sahel or plain, 242.
Salamis, H.M.S., 340.
Salisbury, Lord, 322; his estimation of Sir J. D. Hay, 352.
Salli, 100; Governor of, 102.
San Stefano village, 64.
Sawle, Captain, 296, 298.
Scott, Sir Walter, 3.
‘Scraps from my Note-Book,’ 367, 396.
Sebastian, King of Portugal, 241.
Sebu river, 238.
Senya el Hashti, or Spring of Hashti, 223.
Serruya, Mr. J., 92.
Seville, 11, 225.
Sharf village, 193.
Sharf el Akab, 371.
Shashon, Sheikh, 243.
Shawía district, 104, 170.
Shebá, 368.
Shebenía, 378.
Shedma district, 122.
Shella, 99.
Sherarda, Governor of, 214.
Sheridan, 4.
Shirreff, Miss, her recollection of Sir J. D. Hay’s early home, 8.
Shloh tribe, 291; the women, 295, 299; hospitality, 295, 298.
Sicsu, Mr. David, the Interpreter, 88, 109, 131, 216.
Sid Abd-el-Malek, 78.
Sid Alarbi Mokta, 113.
Sid Bel-Abbas, tomb of, 110.
Sid Ben Yahia, 88.
Sid Buselham, 136.
Sid Buselham Ben Ali, 68.
Sid Dris Ben Yamáni, 275.
Sid Mogdul, 123.
Sid Mohammed, Sultan of Morocco, 79, 216; reception of Sir J. D. Hay, 216,
231, 237, 270; final interview, 276-282; his entry into Rabát, 230; method
of quelling a rebellion, 233; death, 307.
Sid Mohammed Bargash, 321.
— — Ben Dris, 72; manner of his death, 72.
— — Khatíb, 180, 181.
Sid Musa, the Hajib, 272, 289.
Simpson, Dr., 90, 101, 103.
Slavery in Morocco, 357.
Smith, General, 30.
‘Snabi,’ 376.
Spain, question regarding Ceuta, 68; declares war with Morocco, 205; peace
concluded in 1860, 213; claims indemnity, 214.
Spanish chapel, protection of, 208-211; ‘three-decker,’ model of a, 192.
Spartel, Cape, 192, 390.
St. Leger, 89, 112.
Stockholm, 66.
Stopford, Admiral Sir Robert, 62.
Stunmer, Baron, 36.
Suanni, 78, 148.
Suánnia, 105.
Suiera, 123.
Sus, 122, 291.
‘Sweet Waters,’ 39.
Symes, 2.

Tafilelt, 128.
‘Taherdats’ river, 368.
Taheret, 129.
Tait, Archbishop, 3.
Takulebat, 129.
Tama, history of the son of, 82.
Tamista plain, 242.
Tangier, 7; condition of, 68: arsenal, 192; bridge, 193; quarantine regulations,
325.
Tápia, 99 note.
Taza, 289.
Telin, 128.
Tensift river, 106, 269, 292.
Tetuan, 144, 180.
Thackeray, 4.
Thala, 128.
Thomson, Captain J., 5; his ‘Etymons of the English Language,’ 5.
Times, leader in the, 346; extract from, 351.
Tissot, M., 288; letters to Sir J. D. Hay, 336.
Torras, 355, 360.
Torribat, 129.
Trafalgar, battle of, 192.
Tres Forcas, Cape, 144.
Tsemsalla village, 243.
Turkey, the Sultan of, receives Lord Ponsonby and suite, 31; interview with
Lady Londonderry, 37.
Uhara, 86.
Ujda, 69.
Uríka, 289, 293.
Urquhart, Mr., 99.

Vaden, 127, 128.


Vakka, 128.
Valenciennes, 1.
Veneno, 13; kills José Maria, 15.
Vesuvius, H.M.S., 180.
Villiers, 360.
Vismes et de Ponthieu, Prince de, 5.

Wad el Halk river, 192.


Wad Nefis, 67.
Wadan, 127.
Wadnun, 317.
Wales, Prince of, 318; his visit to Tangier, 203.
‘Washington, Mount,’ 207.
Wazan, Sheríf of, 345.
Weber, 356.
Wedderburn Castle, death of Sir J. D. Hay at, 397.
‘Western Barbary,’ 17, 86 note, 177.
Winton, Major de, 296.

Yaden, 127.

Zacchian, 129.
Zarhon district, 160.
Zarhoni, Ben Taieb and Ben Nasr, dialogue between, 81.
Zebdi, Governor, 93.
Zerhóna, the, 214.
Zinat Kar Mountain, 292, 296.
Zinats village, 196, 228.
Zouche, Lord, 49; his defence of Sir J. D. Hay, 351.

THE END.
OXFORD: HORACE HART
PRINTER TO THE UNIVERSITY
FOOTNOTES:

[1]Henry Cockburn, one of the Senators of the College of


Justice, and a leading member of the literary and political society
in Edinburgh of that day.
[2]Mrs. Grey.
[3]Mrs. Norderling.
[4]It was thought improper to speak about any woman to the
Sultan.
[5]Sultan Mulai Abderahman was renowned for his
extraordinary strength.
[6]Life of Stratford Canning, by Stanley Lane-Poole, vol. ii. p.
116.
[7]His uniform.
[8]A species of shad.
[9]See description of Shemis in Hay’s Western Barbary.
According to Tissot, in his Itinéraire de Tanger à Rabat, 1876,
scarcely a trace of these ruins remains.
[10]According to Mr. J. Ball the ‘Elaeoselinum (Laserpitium)
humile.’
[11]Tápia is a kind of cement formed of lime, mixed with small
stones, beaten down in blocks by means of large wooden cases.
The Moorish castle at Gibraltar is built with tápia, and still looks as
solid as if new.—J. H. D. H.
[12]The Sultan Assuad referred to was the seventh of his
dynasty. He was buried at Shella, where his tomb bears an
inscription, of which the following translation has been kindly
supplied by J. Frost, Esq., British Vice-Consul at Rabát:—‘This is
the tomb of our Master the Sultan, the Khalifah, the Imam, the
Commander of the Muslims and Defender of the Faith, the
Champion in the path of the Lord of the worlds, Abulhasan, son of
our Master the Sultan, the Khalifah, the Imam, &c., &c. Abu Said,
son of our Master the Sultan, the Khalifah, the Imam, &c., &c.,
Abu Yusuf Ya’kub, son of ’Abd al-Hakk, may God sanctify his
spirit and illumine his sepulchre. He died (may God be pleased
with him and make him contented) in the mountain of Hintatah in
the night of (i.e. preceding) Tuesday, the 27th of the blessed
month of Rabi ’al-Awwal, in the year 752, and was buried in the
Kiblah of the Great Mosque of Al-Mansor, in Marakesh (may God
fill it with His praise). He was afterwards transferred to this
blessed and sainted tomb in Shella. May God receive him into His
mercy and make him dwell in His paradise. God bless our
Prophet Mahammad and his descendants.’
[13]Zizyphus lotus.
[14]Elaeodendron argan.
[15]2 Kings xviii. 9.
[16]Dra.
[17]Akka.
[18]? Flirgh.
[19]An orange dye.
[20]The White Fast.
[21]Tiseret.
[22]The French Representative.
[23]In consequence of the immunity he had claimed under
protection of the horse.
[24]The population of Morocco have never accepted, like other
Mohammedans, the Sultan of Turkey—who is not a descendant
of the Prophet—as ‘Kaliph Allah.’
[25]No attempt was made to land troops, neither was a gun
fired.
[26]Afterwards General Buceta, a very distinguished officer.
[27]Written in 1887.
[28]‘Cedrus atlantica.’
[29]Term generally applied to Europeans.
[30]Term used for horses of great speed, fed on dates.
[31]The torture of the wooden jelab is only resorted to in
extreme cases to extort a confession about wealth supposed to
be hidden. The instrument of torture is made of wood, and
resembles the outer hooded garment of a Franciscan friar. It is
placed upright, and the victim is squeezed into it in a standing
position; points of iron project in various parts preventing the
inmate from reclining or resting any part of his body without great
suffering. There he is left upon bread and water, to pass days and
nights, until he divulges where his wealth is hidden.
[32]Mohammedans believe that dates of all deaths are written
in a book by Allah.
[33]Fatmeh is dead. He was a spendthrift, and the bags of gold
were soon squandered in dissipation.
[34]There are no remains of houses or other buildings within
the solid walls which were erected on the north and west side of
this small arsenal. There are two wide gates adjoining each other
through which the galleys were hauled up and placed in safety.
The gateways are of beautiful solid brick masonry; the north wall
is of stone; on the south-eastern side high ground rises from this
enclosure. On the top of the hill there are the remains of a rude
‘Campus Aestivus.’ About a mile up the river are the ruins of a
Roman bridge leading to Tangier, the Tingis of the Romans; the
chief arch of this interesting monument fell in 1880. The date of
the arsenal and bridge is, I believe, the year 1 A.D.
[35]About twenty miles from Trafalgar.
[36]House of succour.
[37]Readers may be shocked that such barbarities are
practised by the Moors; but they are a thousand years behind the

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