1. No category

CR163
Psychiatric services for children
and adolescents with intellectual
disabilities
October 2010
© 2010 Royal College of Psychiatrists
College Reports have been approved by a meeting of the Central Policy Coordination Committee and
constitute official College policy until they are revised or withdrawn. They are given blue covers and are
numbered CR1, CR2, etc.
The Royal College of Psychiatrists is a charity registered in England and Wales (228636) and in
Scotland (SC038369).
COLLEGE REPORT
Psychiatric services
for children and adolescents
with intellectual disabilities
College Report CR163
October 2010
Royal College of Psychiatrists
London
Approved by Central Policy Coordination Committee: July 2010
Due for review: 2013
Disclaimer
This guidance (as updated from time to time) is for use by members of the Royal College of
Psychiatrists. It sets out guidance, principles and specific recommendations that, in the view of the
College, should be followed by members. None the less, members remain responsible for regulating
their own conduct in relation to the subject matter of the guidance. Accordingly, to the extent
permitted by applicable law, the College excludes all liability of any kind arising as a consequence,
directly or indirectly, of the member either following or failing to follow the guidance.
Contents
Working Group
4
Executive summary
5
Introduction
6
The population and its needs
11
Characteristics of a model service
19
References
23
Royal College of Psychiatrists
3
Working Group
4
Dr Thomas Berney
Royal College of Psychiatrists, Faculty of Child
and Adolescent Psychiatry
Dr Pru Allington-Smith
Royal College of Psychiatrists,
Faculty of the Psychiatry of Learning Disability
http://www.rcpsych.ac.uk
Executive summary
This document is the revision of the Council Report CR123 (Royal College
of Psychiatrists, 2004). It deals with psychiatric services for a population
that, falling between child and adolescent psychiatry and learning disability
psychiatry, is still relatively neglected. The report is intended to complement
the steady stream of publications which have been produced across the UK
and Ireland over the past decade.
The report reviews the provision of a psychiatric service to young
people, aged under 18 years and with significant intellectual disabilities, and
their families. It starts with an overview of the changing approaches to the
psychiatric needs of this population; notably the confusion in terminology
(between learning disability and learning difficulties), the shift of emphasis
from a service for people with (lifespan) intellectual disability to one for
young people, the move to a comprehensive service for young people that
extends up to age 18 years and the continued concerns about the transition
to adult services.
Setting out the current aims of a service, the report describes the
population, the high prevalence of associated disorder and its nature,
complicated by developmental disability, before going on to describe the
variety of interventions required. This includes supportive and diagnostic
services as well as a breadth of treatment approaches that range
from behavioural to psychodynamic, environmental adaptations and
pharmacological measures. The report notes the other demands for research,
teaching and training as well as the requirements of the legal system. On
this basis, it sets out the characteristics of a model service dealing with its
structure, location, personnel and resources. Although the focus is on the
psychiatric components, the report recognises that such a service must be
multidisciplinary and multi-agency and therefore must be seen within the
wider range of services supporting mental health, including education, Social
Services, community child health services and other agencies such as the
employment support group Connexions.
The intent is to provide the basis for a standard specification that can
inform negotiations between service commissioners, clinicians and general
managers of mental health services. The report is aimed at anyone involved
in planning or helping to develop a psychiatric service for children and
adolescents with intellectual disabilities.
Royal College of Psychiatrists
5
Introduction
This report is intended to inform the negotiations between service commissioners, clinicians and general managers of psychiatric services for children
and adolescents with intellectual disabilities and their families. It aims to
give an overview of the ways in which a service might be provided and
the elements for a standard specification that might be adapted for local
need.
Background
The United Nations (UN) Convention on the Rights of the Child, ratified by
the UK in 1991 and by Ireland in 1992, encouraged the development of
services that ‘put children first’ and were integrated with the mainstream.
These concepts were consistent with those inherent in the Irish Constitution
and in the UK’s Children Act 1989, the latter identifying children with
disabilities as ‘children in need’. The Convention’s principles were
subsequently embodied in the Disability Discrimination Act 1995 across the
UK (amended to include education by various Special Education Needs and
Disability Acts between 2001 and 2004), as well as by the Education Acts in
the UK (1996) and Ireland (1998). Although these Acts have encouraged a
broad and balanced education, they have also made greater demands on the
young person. For example, the introduction of a national curriculum for all
pupils in England, although broadly welcomed by special schools, imposed
additional demands that potentially limit the time and resources available
for individual work.
Reconfiguration of the National Health Service (NHS), with its
increasing emphasis on community provision, accompanied the drive towards
services that focused on children and adolescents rather than a particular
overriding disability or disorder. Until 20 years ago, psychiatric services for
young people were a major component of intellectual disability services.
The tidal shift in government policies indicates that now they should be part
of a comprehensive child and adolescent mental health service (CAMHS), a
shift that has coincided with the extension of their age range to 18 years.
The increased demand on services, coupled with limited resources, has
meant that in many areas young people with an intellectual disability found
themselves in limbo and looked to community paediatrics to bridge the gap.
In 2005, the Department of Health’s mapping exercise for CAMHS (www.
childhealthmapping.org.uk) found about half of the services to have specialist
provision for intellectual disability but it is difficult to derive reassurance
from figures that show the rate of increase of provision to have slowed and
which give no real indication of the quality of the service. Today, it appears
that these services have not yet lost their Cinderella status for they are still
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Introduction
far from routinely available across the UK and, moreover, future budgetary
limitations are likely to lead to some retrenchment.
Increasingly, services have become dedicated to the management
of the young person in the home and at school. However, although the
associated curtailment of NHS hospital resources has encouraged the
retention of young people in their community, it also led to the development
of other institutions, particularly in the independent sector. There is a
shortage of in-patient places, 40% of which are provided by the private
sector (O’Herlihy et al, 2001). Residential schools continue to flourish, some
providing care for up to 52 weeks per year, but not always with good access
to appropriate healthcare. The lack of clarity arising from the division of
responsibilities between, for example, the home authority and the institution,
has led to uncertainty and delay in the provision of mental health services
for children in their care.
Coupled with increased pressure on resources and greater concern
about the legality of certain controls (e.g. the right to restrain or detain a
child) and treatments (e.g. rectal medication), it has become more difficult
for schools to keep certain children within their service. The steady progress
towards inclusion reduced the number and size of specialised settings which
had historically been able to cope with levels of aberrant behaviours that
were beyond mainstream classes, which made for the more frequent use
of exclusion and an increased demand on treatment services. Community
services that had been based on special schools have had to extend and
change their style to provide for a more diffusely scattered population.
Until recently there had been little development of the specialised
psychiatric services required for young people with intellectual disabilities, but
in the past 6 years such services have been recognised as a component of a
comprehensive CAMHS in England (Department of Health, 2004; 2008a) and
Wales (Welsh Assembly Government, 2005) and have been the subject of a
position statement by the Irish College of Psychiatrists (2004). In Scotland, a
needs assessment report (Public Health Institute of Scotland, 2003) noted the
gap in service provision for this group and although it remained unaddressed
by the implementation document that followed (Scottish Executive Child
Health Support Group, 2005) and excluded from the report on in-patient
services (Scottish Executive Child Health Support Group, 2004), this is to be
remedied by an appendix to the framework that is in preparation.
These developments have to be seen within the wider range of services
supporting mental health, which include education, Social Services and other
agencies such as the employment support group Connexions, a whole range
of tier 1 services (Committee of Inquiry into Meeting the Mental Health
Needs of Young People with Learning Disabilities, 2002). The ‘Do Once and
Share’ programme led to the development of a model care pathway (Pote &
Goodban, 2007) and other publications which set out the practical details as
to how the components of a service might operate (Bernard & Turk, 2009;
Williams & Wright, 2010).
Terminology
Learning
disability
The departments of health of the UK adopted ‘learning disability’ as a term
to identify the condition of ‘mental retardation’, the term used in ICD–10
Royal College of Psychiatrists
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College Report CR163
(World Health Organization, 1992) and categorised as F70–F73. In Ireland,
the Department of Health and Children suggested the use of the terms
‘intellectual disability’ for people with a moderate or more severe mental
retardation and ‘learning difficulty’ for people with mild mental retardation
(Department of Health, 1990). At about the same time, across the UK, the
Department for Education adopted the term ‘learning difficulties’ in the
Education Act 1993.
The similarity of the terms has led to confusion, particularly as
the same words are used to denote different categories of severity, the
educational category of ‘moderate learning difficulties’ largely corresponding
to the health categories of ‘mild’ or ‘borderline’ learning disabilities. This
confusion is compounded as job descriptions, service specifications and
academic publications use the terms ‘learning disabilities’ and ‘learning
difficulties’ virtually synonymously, although it is important to recognise that
the need for special educational provision reflects not just the individual’s
cognitive ability but also their social and emotional competence. In health
internationally, the term ‘intellectual disability’ is replacing all these terms,
although the revision of ICD–10 may well bring further change. It should
be appreciated that ‘developmental disability’ and ‘neurodevelopmental
disability’ describe an overlapping but usually wider range of disability in
which cognitive deficit is not necessarily present.
This report uses the term ‘intellectual disability’ without intending it
to have any theoretical or clinical significance, although it continues to use
‘learning disability’ where referring to particular specialties or services in the
UK that retain that title.
Whether a person is best dealt with by the learning disability service or
mainstream CAMHS will depend on local commissioning. This should avoid
arbitrary assignment by intellectual ability but should take into account the
nature of the child and the disturbance that may be caused them as well as
local resources and expertise.
Children
and adolescents
In some services, ‘children and adolescents’ are defined by age, a cut-off
point of 19 years often being used in line with education practice, or of
18 years in line with the UN Convention on the Rights of the Child. Other
services for young people use leaving school as a defining factor, an event
that may occur as early as age 16 years, although there is the potential for
further education. It is important not only that the cut-off points between
various services are clearly defined but also that there should be some
overlap in order to allow a degree of flexibility. It is essential that there is
no gap in provision, particularly where services are not coterminous, and
that all referring agencies are aware of the nature of provision and the
referral procedures, including those in emergencies. People should have
access to those services best able to meet their needs, rather than being
subject to an arbitrary allocation based on an ‘exact’ IQ score or their
birth date. Children and adolescents of all ages and levels of disability
have very different needs that are best addressed from a developmental
perspective.
In this report we use the term ‘young people’, recognising that this
includes a wide range of age and developmental stage and, consequently,
of psychiatric disorder.
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Introduction
Psychiatric
service
The psychiatric service is delivered by a multidisciplinary (and sometimes
multi-agency) team dealing with the assessment and management of
psychiatric disorder – a term that includes a wide range of disturbance that
may arise from mental illness, emotional problems or learnt maladaptive
behaviour that may be considered to be ‘challenging behaviour’. The
boundaries of the service are likely to depend on local agreements rather
than any (national) concepts. Although the service would normally include
a psychiatrist, he or she may not be involved with many of the children and
carers that are being dealt with by the service.
The service is only one of a range of other services involved in the
promotion of mental health (Committee of Inquiry into Meeting the Mental
Health Needs of Young People with Learning Disabilities, 2002) and it is
essential that it be well integrated, a move that is likely to be encouraged by
the development of multi-agency groups such as children’s trusts.
Aims
of services
Prevention
The prevention of intellectual disability itself is mainly the remit of other
clinicians and scientists such as obstetricians, paediatricians and genetic
counsellors, although psychiatric services have an important collaborative
and supportive part to play in such work. More central to the role of the
psychiatrist is the prevention and amelioration of the mental health problems
associated with disability, and this requires work with both children and
their families, as well as with other professionals involved in their care and
education. Much will depend on the extent to which supportive services
such as specialised teaching and training (in areas such as communication,
relationships and the skills needed to lead a more independent and satisfying
life) are accessible and appropriately funded. For example, in some areas
teaching social skills, emotional literacy and emotional management
(including relaxation training and anger management) might be more
effectively done by schools and colleges than by mental health services.
Programmes such as Portage (a home-visiting educational service for preschool children), Early Bird (supporting parents when their child is first
diagnosed with an autism-spectrum disorder) and Hanen (teaching parents
and children effective communication skills) can help parents as well as
children in their adjustment to disability.
Management
Early diagnosis and assessment is essential, the latter including the
interaction and needs of the whole family, not forgetting the siblings.
Thereafter, many of the mental health problems of young people with
intellectual disabilities follow a pattern of chronicity or frequent relapse,
particularly at times of transition, for example on changing school or service.
Often this means the long-term involvement of the psychiatric services
with the young people and their families, both directly and by liaison with
Royal College of Psychiatrists
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College Report CR163
the wider, generic health, education and Social Services networks, to
provide an integrated, multi-agency service. For some, it involves working
in collaboration with a variety of residential facilities that includes schools,
children’s homes and specialist units. Such service networks need to be
comprehensive, catering for young people of all ages with all degrees and
forms of disability, as well as to bridge the transition to adult services.
How services are delivered will vary from place to place, depending on
local resources, priorities and other service initiatives. This report outlines the
important constituents that need to be available somewhere within the local
service network. Service commissioners may need to approach both child
psychiatrists and learning disability psychiatrists to ensure a comprehensive
delivery, and there should be clearly defined care pathways.
Services need to be both accessible and acceptable to families, who
should always be consulted about treatment, which will often depend on
their active participation. Some will need high levels of personal or material
support to participate; all families need to have their social and cultural
backgrounds taken into account, including language and culture as well
as the effects of discrimination. These factors will add extra complexity,
particularly with the involvement of others, such as interpreters, clerics,
community workers and local leaders, and complicate issues such as the
maintenance of confidentiality.
The needs of children and their families lend a different emphasis to
the character of the service compared with that for young people of normal
ability. The more severe the intellectual disability, the more likely the work is
to be behavioural and to be done through staff, family and carers, frequently
at the school; differing perceptions and acceptance of disability underlies
family work, where a frequent aim is simply to help the parents adopt a
common perception, purpose and strategy. On the other hand, clinic work
brings the benefits of greater privacy, although, whatever the setting, the
psychiatrist is only one of the members of a community team.
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The population and its needs
Various research studies and service development projects have estimated
that at least 2.5% of the general population in Great Britain has an intellectual
disability of such severity that, at some point in their childhood, they will need
specialist services (Emerson & Hatton, 2008). Within this group nearly 40%
will experience significant psychiatric disorder compared with less than 10%
of those of normal ability (Emerson, 2003a; Emerson & Hatton, 2007).
A number of factors predispose areas to a higher prevalence of
disability and disorder or to difficulties in service provision, including:
socioeconomic deprivation
inadequate supportive services
poor educational provision
a lack of local residential projects
a remote rural population.
Common
Problems
clinical problems
of young people
The full range of psychiatric disorders is seen in young people with
intellectual disability. The problems are frequently long term and the
response to treatment idiosyncratic because of the underlying neurological
disorder. A number of other disabilities and disorders frequently occur in
association with intellectual disability, including epilepsy, cerebral palsy
and sensory impairments, as well as those characteristics peculiar to the
underlying medical disorder (Dykens, 2000), and the potential impact of
these needs to be understood. It is important to recognise that the presence
of intellectual disability and other developmental disorders means that
young people and their families may need to be seen over a longer period of
time before change can be expected and that the life-long nature of those
disorders contributes to high rates of re-referral.
Consequently, there is a need for coordinated work with specialised
health and educational services, Social Services, voluntary agencies and
local parent groups. In addition, certain problems of such young people
may require more specialised treatment. These include the conditions listed
below.
1
Autism-spectrum and other pervasive developmental disorders are
particularly frequent, lie behind many, if not most, of the problems
of those referred to specialist CAMHS and pose a special challenge
Royal College of Psychiatrists
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College Report CR163
to the services. Given the nature, severity and impact of autism and
its related disorders on young people, their families and carers, it is
necessary that specialist expertise and support be available locally in
order to facilitate the early diagnosis, development and integration of
these young people. Here the service response should be determined
by individual need and the suitability of local provision, rather than
being based simply on an arbitrary measure of ability level (Le Couteur
& Baird, 2003). The National Institute for Health and Clinical Excellence
(NICE) guidelines on the recognition, referral and diagnosis of autismspectrum disorders in children and young people are in preparation
(http://guidance.nice.org.uk/CG/Wave15/78).
2
Attention-deficit hyperactivity disorder (ADHD) is a diagnosis that has
to be made with regard to the child’s developmental level and, as yet,
it is unclear in what respects the response to treatment differs from
that of the normal population.
3
Emotional disorders are often overlooked as they frequently present
in conjunction with a behavioural disorder, especially in services that
historically have not been funded and staffed to meet such needs.
4
Behavioural disorder, frequently manifesting as aggression directed
to others but also in the form of self-injury, is often the reason for
referral. Commonly a reflection of limited communication, it may also be
associated with physical disorder including everyday problems (such as
earache, toothache and indigestion) as well as epilepsy or adverse effects
of medication. Effective management of the physical challenges has often
been impeded by doubt about the permissibility of particular forms of
treatment, physical intervention or seclusion (Lyon & Pimor, 2004).
5
Disorders of sleep, eating and elimination are particularly common
among young people with intellectual disabilities, and often are of a
type not commonly found in other children (for example, pica). When
severe, these can precipitate family breakdown.
6
Child abuse, including neglect, emotional and sexual abuse – children
with intellectual disabilities are at greater risk of certain kinds of abuse
than other children and both the abuse and its long-term effects often
pass unrecognised (Allington-Smith et al, 2002; Sequeira & Hollins,
2003; Sequeira et al, 2003).
7
Offending and forensic psychiatric problems occur particularly in
adolescence, and may also be secondary to any of the above. They are
becoming the focus of their own specialist services.
8
Serious mental illnesses (including schizophrenia and affective
disorders) do occur in young people with intellectual disabilities.
However, assessment can be difficult partly because of the complexity
of the presentation but also where the interpretation of symptoms is
hindered by limited communication skills. The latter will interfere with
the use of standard diagnostic criteria that depend on descriptions of
specific experiences and feelings.
Problems
of families
The impact of disability on families is variable but can be great and
substantially affect family function. Alongside the child’s abnormal
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The population and its needs
development and behaviour, the family have to cope with lack of sleep,
difficulties in finding appropriate strategies and in coming to terms with
the diagnosis. Insecure attachment patterns may persist from infancy and
adversely affect the development of personality so that complex relationship
and adjustment problems are frequent and make the child’s disturbance
worse (Fidler et al, 2000; Smith et al, 2001; Emerson, 2003b; Karola et al,
2010).
Besides the environmental problems listed at the start of this section,
the problems of the family can be compounded by the failure of services to
take into account differences in cultural attitude to disability. Children and
families can find themselves excluded from mainstream services because of
their degree of intellectual disability, the unusual and violent nature of the
behaviour or by the practical difficulties of accessing a traditional clinic.
Diagnosis
of intellectual disability
The need for early intervention has been emphasised (Scottish Executive
Child Health Support Group, 2005; Department of Health, 2008a), with early
diagnosis an essential preliminary. The impact of disability is both immediate
and long term and, rather than waiting until problems develop, there should
be a pre-emptive link with services from the time the disability is identified.
Whereas this is at a primary level, there should be ready involvement of
more specialised services as occasion demands for an individual and their
family.
Early diagnosis of the intellectual disability and its consequences
centres on the child development unit and potentially extends across a wide
range of specialties, from developmental and community paediatrics to
neurology, psychology, both clinical and educational, and clinical genetics.
The frequency of delayed language development makes speech and
language therapy an important element, especially where the services and
assessments are in languages foreign to the family or the child.
Older children, particularly those with less severe degrees of disability
or recent immigrants, may be picked up by educational psychology and
community child health services. Particular problems arise for those who
are approaching the transition into adult services; they risk the deferment of
action until they have left the young people’s service and then face further
delay as they work their way up a new waiting list.
Meeting
health needs
Psychiatric disturbance should be prevented as well as treated (Committee
of Inquiry into Meeting the Mental Health Needs of Young People with
Learning Disabilities, 2002), requiring adequate CAMHS with the full range
of conventional psychiatric intervention strategies as well as taking account
of particular needs such as those of young people from Black and minority
ethnic backgrounds. It needs to be noted that there is very limited research
to answer the demand for evidence-based treatments for these disorders
whose response, like their presentation, is often atypical. However, specific
outcome measures appropriate for children with intellectual disability and
their families are being piloted by CAMHS Outcome Research Consortium
(CORC).
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College Report CR163
In addition to the competences required for mainstream child and
adolescent psychiatry, particular expertise is required for:
diagnosis and assessment
counselling services
other family work
specialised individual therapies
pharmacological therapy
liaison and joint working with other agencies
emergency cover
the expert witness.
Diagnosis
and assessment
Diagnosis is only one aspect of an assessment, which includes children’s
general level of functioning within their social context, notably their family
and school.
Counselling
services
In addition to a range of multi-agency support, usually at tier 2 level, a family
will often require specific counselling. Although initially this will be about the
diagnosis and the outlook, further work is likely to be necessary from time
to time throughout the family’s life, as new hurdles expose fresh issues for
its members to cope with, particularly at times of transition (Bicknell, 1983).
In addition, the young people themselves will be particularly vulnerable to
adjustment problems as they come to recognise their limitations, particularly
in contrast to their peers and siblings. Again, this work has to be closely
linked to that of other services so that it includes liaison as well as direct
clinical work.
The growth of genetic diagnoses may give rise to emotional issues
in families and take it beyond the competence of the genetic counselling
services.
Other
family work
The work, whether done by different members of the clinical team, often
involves helping families understand their children’s behaviour, facilitating
the development of parenting skills, enhancing family coping mechanisms
and promoting appropriate play, occupation and communication. In addition
to good teamwork, strong multi-agency relationships are required to ensure
that the clinical input is coordinated effectively with other ongoing work,
notably that done by social and educational services.
Specialised
individual therapies
Certain forms of psychological therapy are of established use for young
people with intellectual disabilities; these include a variety of behavioural
and psychodynamic approaches and other focused forms of treatment.
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The population and its needs
Although the evidence base for mental health work with young people of
normal ability usually can be assumed to be applicable to young people with
intellectual disabilities, adaptations will be necessary, for example to cope
with communication and conceptual difficulties.
This work is often done in conjunction with the community team.
Besides the supportive work described earlier, there is the need to focus on
those individuals with the highest need and to work intensively with the child,
family and school to overcome severe problems in the child’s behaviour. This
may be part of the remit of a generic team or it may be done by a separate
assertive outreach team whose members have the necessary expertise,
experience and time.
Pharmacological
therapy
In many of the conditions and situations described earlier (e.g. psychotic
illness, affective disorders, ADHD and the psychiatric sequelae of epilepsy),
drug treatments are of particular value. Children and adolescents with
intellectual disabilities may have idiosyncratic responses to medication
because of the complexity of their condition and they may experience
difficulties in communication about adverse effects; consequently, the
prescription and monitoring of psychotropic medication for this patient group
requires specialist psychiatric advice (Bernard & Turk, 2009).
Besides adverse effects, there is anxiety about the overuse of
medication (a high level of prescribing is the hallmark of a lack of
alternative resources). An increased level of investigation before starting
a drug is recommended and there is uncertainty about the extent of
monitoring required once it has been established. Despite the fact that
shared-care contracts have been promoted, their acceptance by general
practitioners (GPs) has been limited. Peer-group support and supervision
is essential.
Liaison
and joint working with other agencies
Partnership with other agencies is now seen as absolutely central to all
CAMHS work not only at commissioning and service development but also
at clinical levels. Liaison work should enable the smooth cooperation of the
multiprofessional network so that parents are not faced with negotiating a
maze of services but have a virtual front door into a comprehensive CAMHS
(Department of Health, 2008a). Psychiatric work is delivered as part of a
multidisciplinary, sometimes multi-agency, team.
This can be a complex arrangement where the team has other
roles including, for example, the provision of support at a primary level.
Although there has been an expansion of services specific to young people,
many community teams are still rooted in a lifespan service and also have
to provide a service to adults; there even remain areas that have not
developed multidisciplinary teams or formal provision for young people
with an intellectual disability. Regardless of how it is provided, however,
the psychiatric service must be closely coordinated with all of the following
components.
Other child health services, including generic child psychiatry,
paediatrics, community child health (e.g. community paediatricians,
school doctors, school nurses and community dentistry).
Royal College of Psychiatrists
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College Report CR163
Learning disability services and, in particular, health and local authority
teams for children and adolescents with intellectual disabilities – occu­
pational health and speech and language therapy may be part of one of
these or fragmented across a variety of agencies and generic services.
Educational services, including school staff and educational psychol­
ogists. As with many of the other agencies in this list, this involves
discussion with people who may have an intimate knowledge of the
young person and their family but are outside the boundary of the
health service. There are therefore particular constraints on clinical
confidentiality, although whether within or outside the health service,
disclosure will be determined largely by the explicit agreement of
patients and their families (Royal College of Psychiatrists, 2006).
Social Services – social workers and care workers as well as the variety
of people who organise special aspects of care such as out-of-home
placement.
Employment support agencies such as Connexions.
Services involved with offenders such as youth offending teams and
youth justice teams.
Voluntary agencies, including groups such as interpreters, religious
groups and community workers, where these are relevant.
Liaison is complex, the more so as many of the liaison personnel are
part of wider, generic services that are not specific to disability or to young
people. It is essential that resources are available for consultation with
others, facilitating the access of these young people and their families to
the generic services. The aim should be for the service to be accessible and
useful to all cultural, social and ethnic groups. Close links may be encouraged
by different structures including split posts, allowing one person to bridge
two agencies or specialties.
The transition to adult services has been a neglected area. Transition,
intrinsic to normal development, is particularly stressful for this vulnerable
group, the more so as they are often faced with multiple, concurrent
transitions as they change school, Social Service support and psychiatrist,
while losing key personnel such as the community paediatrician and
school nurse. Uncertainty, helplessness and last-minute arrangements
all increase the stress and can reverse the progress that has been made.
Various agencies are seeking more effective management of the process
(Department of Health, 2008b), but psychiatric services may be divided by
differing perceptions of their remit with, for example, uncertainty as to the
extent to which the developmental disorders should be dealt with by adult
mental health services. Local transition pathways should be developed.
Emergency
cover
There needs to be provision for 24-hour cover to respond to emergencies
within the local catchment area.
The
expert witness
The courts, both civil and criminal, require assistance in understanding and
managing young people with intellectual disabilities. There is a shortage of
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The population and its needs
expertise in what has become an increasingly specialised area of work, which
only a few psychiatrists are willing or equipped to undertake. Recognising
that a service will be required to respond to judicial decisions, it needs to
be clear as to the extent to which it will support this input into the process
(Royal College of Psychiatrists, 2008).
Academic
work
Teaching
The staff involved in the care of children and adolescents with mental health
problems and intellectual disabilities require access to appropriate education
programmes. Mental health workers (including psychiatrists, clinical
psychologists, nurses and other specialist therapists) have a particular role
here in order to enhance mutual understanding and ease of cross-referral,
and to indicate directions for future research. The effect of brain dysfunction
and environmental factors and their interaction is at its most obvious in
this area of psychiatry, making it an ideal teaching ground for both medical
students and postgraduate trainees (Hollins & Bradley, 1987).
Research
and audit
Many of the issues concerning the cause, nature and outcome of psychiatric
problems in young people with intellectual disabilities are as yet poorly
understood. The lack of evidence about the effectiveness of various
treatment strategies in these young people means there is little guidance as
to which treatment should be used with which child. There is an increasing
pressure to show measurable outcomes. All this needs to be addressed
urgently through research and audit and requires an academic infrastructure
to be put in place.
Continuing
professional development
The service requires psychiatrists with the necessary competences in a
field that bridges both child psychiatry and learning disability psychiatry.
Few psychiatrists are likely to enter with dual accreditation in these two
specialties, so it is important that posts allow clinicians from the start to
acquire the additional skills, knowledge and experience essential to clinical
effectiveness. Because joint working with other disciplines and agencies is an
integral element to this work, these specialist services can provide support,
training and clinical experience for others if given the resources.
Service
development and planning
Although there has been a significant expansion of services with the growth
of comprehensive CAMHS, relatively few of those for young people with
intellectual disabilities are well developed, many still being in an early stage
or even stuck in a planning process. There continues to be a gap with the
steady reduction of lifespan posts. It is difficult to quantify but the use of outof-area placements (whether educational or health) will give some indication
of the success of the local service.
Royal College of Psychiatrists
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College Report CR163
The reconfiguration of health, social and educational services
encourages evolution and it is essential that the multidisciplinary teams
fulfilling this role be closely involved in service development programmes.
However, as with their other activities, this requires sufficient time and
resources.
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Characteristics of a model service
Local needs and resources will lead to variation in the constituents of
particular services, but certain elements are common to all.
Contracting
for service
Commissioners and health boards should identify what expertise is available
locally and, through the process of contracting, ensure that there is clarity
as to who is providing what. The expectation is that each area must provide
a comprehensive CAMHS open to all children irrespective of ability. At least
one appropriately trained psychiatrist should be identified within each district
to provide an adequate service to young people with intellectual disabilities.
Besides being closely integrated with other services for young people, the
service should overlap other psychiatric services for adults, both those with
and without intellectual disabilities, so that there are no gaps.
Location
Both local district-based services and the larger regional or teaching services
may well contribute to this particular component of CAMHS. Using the Health
and Social Care Advisory Service classification (Williams & Richardson,
1995), the lower tiers would be provided locally, as an integral part of the
district’s overall community services, with contractual access to supra-district
tier 4 services. Some contractual access to in-patient beds is essential and in
order that those admitted can maintain contact with their own community,
these beds should be distributed across the UK.
Ideally, teams should have a common base, often in conjunction with
CAMHS as part of a comprehensive service.
Personnel
The development of the National Service Framework (Department of Health,
2004) included an External Working Group for Young People with a Learning
Disability. It recommended that a community team would comprise 5–6
whole-time equivalent (WTE) members for a population of 100 000. The
exact composition is dependent on local preference but, as the work requires
full, multidisciplinary mental health teamwork, the team should include
psychiatrists, psychologists, nurses, speech therapists and occupational
therapists, while drawing on the wider CAMHS team for other specialist
therapists (i.e. physiotherapists, music, art or play therapists). Adequate
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College Report CR163
secretarial support is essential to the coherence of an effective community
team as well as other managerial and back-up staff. Where there is a high
density of a particular Black and minority ethnic group, the team might
include bilingual workers or link workers, or have creative links with local
voluntary agencies.
All staff should have appropriate training and experience in working
with young people whose mental health problems are complicated by
intellectual disabilities (Mental Health Foundation Committee, 1997).
For psychiatry, the Royal College of Psychiatrists suggests that a
community service for young people with severe intellectual disabilities
requires a minimum of two sessions of consultant clinical time per 100 000
total population, whereas the inclusion of young people with mild intellectual
disabilities will require a further three clinical sessions; these sessions do not
include time for administration and training. These levels reflect the demands
of the high prevalence of pathological disorders, the community orientation
of the work and the substantial amount of time spent in multidisciplinary
and multi-agency liaison. To some extent the level of demand will depend on
other local factors such as the social demographics, geography, the size and
expertise of the community team and the extent to which general practice is
prepared to take on continuing care and prescribing.
Psychiatrists, whether they come from a background in child psychiatry
or learning disability psychiatry, should have skills in working with young
people with intellectual disabilities. Given the scarcity of supply relative to
demand, it is likely that, once the role is taken on, the psychiatrist will need
further training and experience as well as peer support and supervision. There
should be provision for this in the post, including the allocation of additional
time. The psychiatrist should be encouraged to link with wider groups such as
the Child and Adolescent Learning Disability Psychiatry Network (CALDPN).
In a similar vein, nurses may be drawn from various backgrounds,
including mental health, intellectual disability and child health, the essential
element being a willingness to work with children and their families as well
as a flexible approach and an appreciation of the importance of other factors
such as education, social support and housing.
Communication is a key problem for many children and having a
speech and language therapist on the team is highly advantageous. In
addition to working with the young person and their family, this team
member can liaise with their school-based colleagues.
There is growing enthusiasm for interventions based on sensory
integration usually provided by a suitably trained occupational therapist.
Although acknowledging a lack of evidence of effectiveness to date, many
services have found sensory integration interventions to be invaluable.
An in-patient unit requires about one WTE consultant for 12 beds,
taking into account the significant need for work in the community before
admission and, more extensively, around the time of discharge, often at some
geographical distance. Despite the fact that the turnover in a secure unit
may be less than in an open unit, the demands of the legal framework are
substantially greater so that the requirement for consultant time is no less.
Material
resources
Although much of the work is done in the community, community services
need access to the same resources as the rest of CAMHS.
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Characteristics of a model service
Community
and outreach services
Repeated appointments in standard working hours at a clinic are often
beyond the means of a working family already struggling to cope with
the many commitments that can come with a child with a disability. The
delivery of community services means substantial flexibility to allow the
great variety of out-patient and community activities in conjunction with
the other staff and agencies to be accessible to the young person and their
families, whether at school or in the home and at an appropriate time. It
entails both the means and time to travel, which should be reflected in the
budgeted levels of activity. Besides individual work, the development of
specialist teams should be encouraged. Such teams, given the flexibility and
time, may replace admissions to a residential unit and be more effective at
giving the family the confidence that it can cope with its problems. (This will
not be appropriate for every case as it is an approach that may be precluded
by home circumstances, such as the needs of other siblings or the mental
health of a parent, so that an out-of-home placement will still be required
occasionally.)
Services should reflect the cultural, ethnic and religious diversity of
society and take account of the different patterns of family life.
In-patient
facilities
Some young people, even with good community support, cannot be managed
safely or effectively at home but require an out-of-home placement. A
substantial amount of the psychiatrist’s work will be in collaboration with
foster homes, children’s homes and residential schools (Berney, 2009), as
well as with general child and adolescent in-patient services (the complexity
and size of the workload will depend on the familiarity of the placement
staff with the disabilities involved). However, there are some young people
whose behaviour is such that they cannot be safely or adequately treated
other than in specialist in-patient facilities comparable to those available
to young people without disabilities (O’Herlihy et al, 2001). These will
allow the assessment and diagnosis, as well as both short- and mediumterm treatment, of complex, difficult cases in a setting that provides
developmentally appropriate care. These facilities need to be able to cope
with the high levels of aggression that can occur in this group of users.
The number of beds required will vary depending on the community
service and its level of resources, as well as on what is provided by local
education services, Social Services and other health facilities (such as short
break facilities for young people with challenging behaviour) (Smith &
Berney, 2006). A total population of 1 million requires about 3–4 beds for
young people with severe intellectual disabilities, 2–3 beds for those with
mild intellectual disabilities and 1 bed for those who require low secure
provision. The last has to provide separately for those who require security
because of the intensity of their disturbance and for those who are offenders
so that it may be at a supra-regional level that is distinct from the national
need for medium secure beds.
Services need to ensure that there is access to provision for the
full range of young people and their needs. They should provide for both
mild and more severe degrees of disability, for children and adolescents,
emergency as well as planned admissions, formal detention under the Mental
Royal College of Psychiatrists
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College Report CR163
Health Act 1983 and for offenders. Young people with autism-spectrum
disorders or violent behaviour may require higher staffing ratios than those
in most other psychiatric units, as well as a robust and well-structured
physical environment that meets their particular needs.
In-patient resources complement (rather than replace) the community
approach for young people. Outreach work can shorten or even eliminate
admission. The need for this as well as for out-patient work must be
recognised and budgeted for as a part of any admission. Commissioners
should ensure that the beds they commission meet their need, with clear
operational policies for the process. These should include well-defined
protocols and criteria for admission with provision for a thorough, preadmission community assessment. If the disruption and duration of
admission is to be minimised, there has to be close liaison between the
in-patient service and the local team. Commissioners should expect good
links with community services and a clear, integrated pathway of care that
includes a plan for discharge. This is hard to achieve if the in-patient unit is
geographically distant from the in-patient service. Each region should have
access to appropriate beds, if only to ensure that young people maintain
their contact with their families and community services.
Evaluation
Specialised services risk isolation. Individual professionals find themselves
losing contact with peers, whose clinical work can be so different, and teams,
whether in-patient or community, can develop an introverted culture that
loses sight of changing practice in their field. Such professional and personal
isolation brings idiosyncratic and sometimes dangerous practices and is
fertile ground for the growth of difficult relationships with others.
It is essential, therefore, to build into any service mechanisms to
support the habit of examining its practice, comparing itself with others and
developing a social network. Its aims should include the encouragement of
professional development and, in identifying innovative clinical practice, to
build on it or discourage it depending on its merits.
There are two systems that have been developed specifically to address
this, both developing standards by self-review and external peer review as
well as providing the means for services to compare their performance with
others. Developed for mainstream CAMHS but with a specific subsection on
child learning disability services, the Quality Improvement Network for Multiagency CAMHS (QINMAC) is aimed at community work. The counterpart for
in-patient services is the Quality Network for Inpatient CAMHS (QNIC). These
not only provide the means of evaluation but also encourage professional
and social networking.
The service must be acceptable to young people and their families
and have commitment to seeking and acting on user and carer feedback
(Department for Children Schools and Families, 2008). Besides formal
measures, such feedback may be obtained informally through clinical work,
parent support groups and other professionals.
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CR161
Revalidation and guidance
for psychiatrists
August 2010
© 2010 Royal College of Psychiatrists
College Reports have been approved by a meeting of the Central Policy Coordination Committee and
constitute official College policy until they are revised or withdrawn. They are given blue covers and are
numbered CR1, CR2, etc.
The Royal College of Psychiatrists is a charity registered in England and Wales (228636) and in
Scotland (SC038369).
COLLEGE REPORT