Child and Adolescent Mental Health Services: inpatient report

A2.2 The Mental Health of Children and Young People: A Framework for Promotion, Prevention and Care: Effectively implementing the Framework to improve the mental health of children and young people with learning disabilities

Produced for the Mental Health Division of the Scottish Government by:

• Lorna Fitzsimmons (Clinical Nurse Specialist, NHS Greater Glasgow and Clyde)
• Dr Susie Gibbs (Consultant Psychiatrist, NHS Lanarkshire)
• Dr Gill Kidd (Consultant Psychologist, NHS Lothian)

On behalf of the LD CAMHS Scotland Network

June 2011

The Mental Health of Children and Young People: A Framework for Promotion, Prevention and Care.

Effectively implementing the Framework to improve the mental health of children and young people with learning disabilities

Introduction

Children and young people with learning disabilities have high mental health needs, which often go unrecognised, and unmet (Emerson & Hatton, 2007). This document addresses concerns about the general paucity and inequity of mental health provision for children and young people with learning disabilities across Scotland. "The Mental Health of Children and Young People: A Framework for Promotion, Prevention and Care" (Scottish Executive, 2005i) (hereafter referred to as 'the Framework') has led to considerable work being done to drive improvements in Scottish Child and Adolescent Mental Health Service ( CAMHS) delivery. Children and young people with learning disabilities are mentioned in the Framework but specific focus is required to meet their mental health needs.

"Mainstream health services should develop the resources and expertise necessary to respond to young people with learning disabilities, their families and networks and should not exclude people because they have a learning disability" (Foundation for People with Learning Disabilities, 2002). This document aims to highlight the mental health needs of children and young people with learning disabilities and to give guidance on how service planners and providers can fully implement the Framework to meet the needs of this vulnerable group. The underlying principles of the Framework apply to all children, including those with learning disabilities. This document should be read in conjunction with the Framework and does not repeat information contained in it. It follows the main themes of the Framework, commenting only on areas where additional consideration is needed to ensure that the mental health needs of children and young people with learning disabilities are properly addressed. While acknowledging the importance of all agencies at all levels in improving mental health of children and young people with learning disabilities, this paper is aimed at health boards and local CAMHS. Its emphasis is on how CAMHS can improve its provision and contribution to existing networks around children and young people with learning disabilities.

Background

One in 40 children under the age of 18 years has a learning disability (Box 1). The number of children with severe and complex disabilities is increasing, with many young children with profound and multiple disabilities now surviving through childhood and into adulthood (Scottish Executive, 2006). Rates of mental health problems in children and young people with learning disabilities are much higher than their non-learning-disabled peers, with over 1 in 3 having impairing mental health disorders that are diagnosable and for which help can be offered. Increased prevalence is particularly marked for autism spectrum disorder, hyperkinesis, "challenging behaviours" (Appendix i) and anxiety disorders (Emerson and Hatton, 2007). The proportion rises to 1 in 2 for children with moderate to profound learning disability. Without intervention, such problems will lead inevitably to further disability, significantly impaired quality of life, and underachievement (Bernard and Turk, 2009). The higher rates of emotional disorder in children with learning disability are significantly linked to the higher rates of adverse life circumstances for this group, with 53% living in childhood poverty compared to 30% for the population in general (Emerson & Hatton, 2007). In Scotland, there are therefore at least 12 000 children and young people with learning disabilities currently in need of access to appropriate mental health services (Appendix ii). Children with learning disabilities account for 14% of all British children with a diagnosable psychiatric disorder.( Emerson & Hatton, 2007; Emerson, 2003).

Box 1: Definition of learning disabilities

Learning disability is a significant, life-long condition that has three components:

• a reduced ability to understand new or complex information or to learn new skills;
• a reduced ability to cope independently; and
• it starts before adulthood (before the age of 18) and has a lasting effect on the individual's development.

Taken from 'The same as you?' (Scottish Executive, 2000(i))

In addition to the universal risk factors for developing childhood mental health problems, children and young people with learning disabilities are exposed to additional risk factors (Box 2). Families struggle to cope with their children's complex physical and behavioural problems, especially where support and respite services are inadequate. The incidence of parental stress and mental illness is higher than in parents of children with typically developing children (Fidler et al., 2000) and these can be exacerbated by associated factors such as loss of sleep. These all impact on parents' ability to carry out recommended intervention strategies, so further increase the risk of mental health problems in their children (Emerson, 2003). Unresolved grief and loss reactions relating to the child's disabilities can also have profound effects on families. These are often prolonged and can re-emerge, particularly at times of transition.

Box 2: Some additional factors that explain the high incidence of mental health problems in children and young people with learning disabilities

• Increased rates of communication difficulties
• Limited coping strategies due to level of cognitive functioning
• Limited social skills
• Higher rates of specific disorders such as autism
• higher rates of physical health problems ( e.g. epilepsy) which are often severe, multiple and complex
• Very frequent severe sleep disorders
• Increased risk of abuse
• Lack of early recognition of mental health problems and lack of access to appropriate mental health services leading to more severe and entrenched presentations
• Increased risk of being 'looked after and accommodated'
• More likely to be living in childhood poverty or to experience multiple adverse life events

Scottish service provision

In the past policy and practice led to many parents of children with learning disabilities being advised that their children be indefinitely admitted to hospitals, often from an early age. With the closure of such institutions and the welcome shift to community care, Scottish mental health services have struggled to develop timely services to meet the needs of these complex and vulnerable children and young people. Possible reasons for this include a lack of recognition for the need for such services and a lack of specific transfer of health funding to the community. Where services are absent or poorly developed, there is a danger that the mental health needs of this population remain hidden. A number of barriers preventing children and young people with learning disabilities from accessing good mental health services can be identified (Box 3). Services are very variable and complex across the country, with mental health input, where present, coming from a variety of sources across the Tiers. These may include CAMHS, life-span learning disability services, child health/paediatrics, educational psychology, social services and non-statutory organisations. These arrangements usually developed according to local historic arrangements or the interests and drive of local clinicians and managers, rather than in an evidence-based, policy-driven or planned manner. Appendix iii shows the current patchwork of services known to be available across Scotland at the time of this report.

In the past 10 years, specialist learning disability CAMHS (' LD- CAMHS') teams have been set up in a small numberof Scottish Health Boards. However, even the most developed Scottish LD- CAMHS teams lack the resources that are available in other parts of the UK and fall well short of recommended staffing levels (Appendix iv). There are no specialist day and in-patient units in Scotland available to adolescents with moderate to profound learning disabilities and severe mental illness. There is almost no intensive community treatment capacity. These young people can rarely access CAMHS in-patient units and clinicians have to resort to ad-hoc local arrangements. These may be dependent on the good-will of services and colleagues, who may lack the required expertise and resources. In some cases this has necessitated admission of children and young people to adult learning disability hospitals and pediatric wards, which is considered clinically inappropriate and unacceptable by current mental health guidelines. Other children are sent to private or NHS LD- CAMHS in-patient units in England, a long way from their families, support systems and local professionals. This is not only highly distressing to both the child and his or her family, but makes any form of integrated care with local health services and multiagency partners extremely challenging. Children with learning disability and mental health problems whose behaviour challenges local services may be placed in residential schools which can be in areas where the CAMHS infrastructure is not able to extend to this group.

Box 3: Barriers for children and young people with learning disabilities to accessing appropriate mental health services include:

• Often excluded from Specialist CAMHS and children generally no longer seen within Learning Disability services
• Exclusion from other existing Tier 2 services, e.g. school counselling services
• Lack of identification of the specific needs of children and young people with learning disabilities in health promotion and prevention work, including lack of developmentally appropriate and accessible information. This can result in their exclusion from such work
• Difficulties accessing traditional clinic-based CAMHS models when children have physical disability and/ or severe challenging behaviour
• A lack of awareness across health, education and social care of learning disability, associated mental health problems and their impact.
• 'Diagnostic overshadowing', where presenting problems are ascribed to a child's learning disability alone, rather than looking at other, potentially treatable physical or mental health causes.
• A lack of clarity of language and definitions (of learning disability) between professionals and agencies resulting in confusion.
• Service rigidity and lack of co-ordinated service planning, for example individual services establishing referral criteria that result in families being 'bounced' between services.
• CAMHS practitioners lacking a working knowledge of the services involved and required for children and young people with learning disabilities may further exacerbate poor communication and co-ordination between services.

A clinical network for LD- CAMHS has been developed in Scotland, with representation from Psychology, Psychiatry, Nursing, Pediatricians and Allied Health Professionals. It aims to develop as a focus for specialist knowledge and evidence-based practice; to liaise with UK-wide networks; and to support service development in Scottish CAMHS (Appendix v). Other relevant networks for those working with this group include the Forensic Mental Health Services MCN ( www.forensicnetwork.scot.nhs.uk). Children with dementia are also a group whose needs overlap with the population of children with learning disability (Childhood Dementias, Stirling 2008).

Policy Context

Children and young people with learning disabilities are identified in the Framework as a group at high risk for developing impairing mental health problems (Emerson & Hatton, 2007). The need for further elaboration as to how those needs should best be met is recognised in the writing of this report. However, other reports, for example the Child Health Support Group In-Patient Strategy (Scottish Executive, 2004), specifically exclude children and young people with learning disabilities from their remit with the understanding that further work was required to look at these specific needs. This work is still outstanding. This was despite recognition that the specific expertise and environment required to meet the needs of children and young people with learning disabilities is generally unavailable in generic Scottish psychiatric in-patient units. Consequently this group of children and young people are at risk of falling into gaps between services as they are seen as outside the core remit of both CAMHS and Learning Disability Services.

In addition to the policy context outlined in the Framework, a number of strategic policies and initiatives relating to people with learning disabilities are relevant including, 'The same as you?' (Scottish Executive, 2000i), which was the first major review of learning disability services in Scotland for 20 years, where the need to maintain a focus on positive mental health is emphasised. The Needs Assessment Reports for Learning Disability ( NHS Health Scotland, 2004) and Autistic Spectrum Disorders (Public Health Institute of Scotland, 2001) developed recommendations outlining the work required to reduce health inequalities as well as developing comprehensive services, including mental health provision for young people with ASD and their families. "This is what we want" (Foundation for People with Learning Disabilities, 2006) outlines guidelines developed through consultation with children and young with learning disabilities and their families as to what they want from CAMHS.

In England and Wales, following the development of their National Service Framework ( DOH, 2004), the drive to develop appropriate mental health services for children and young people with learning disabilities was facilitated by the Public Service Agreement ( PSA) Targets for 2005 which identified access to mental health services for children with learning disabilities as a key indicator for a "Comprehensive CAMHS" (see Box 8 in final section of this document). Such access was also one of the 3 performance indicators for CAMHS in England and Wales. Subsequently a 'Mental Health Care Pathway for Children and Young People with Learning Disabilities' (Pote & Goodban, 2007) was developed, with the aim of guiding future clinical and IT developments in the NHS and co-ordinating these with similar developments in Education and Social Care.

Person-centred multi-agency liaison and planning, as outlined in 'Getting it Right for Every Child' (Scottish Executive, 2005ii)is essential for children and young people with learning disabilities who may have complex physical/mental health needs as well as social care/educational needs. The proposed Integrated Assessment, Planning and Recording Framework could be of particular value for these children and families, who often find re-telling their stories to multiple agencies very difficult.

Some recent concerns have been raised (The Scottish Parliament, 2009) about an impact of 'Hall 4' (Scottish Executive, 2005iii) which has led to fewer routine universal health checks. This could have a particular impact on children with learning disabilities. Developmental delays which may be signposts to later learning disability are often not identifiable in the very early months of life. A lack of universal screening may lead to further delay in the diagnosis of learning disability, thereby losing valuable opportunities for early intervention and support to families.

Basic Principles

Whilst the basic principles of the Framework apply equally to children with learning disabilities, some warrant particular comment in this report:

Physical activity: Children with learning disabilities may have difficulty accessing community facilities such as sports and leisure centres, with deleterious consequences for their physical and mental health. Perceived stigma, sensory sensitivities, exclusion due to a misunderstanding of learning disabilities and behaviours, and lack of physical support required all contribute to reducing access to a range of community facilities.

Terminology: Terminology used to describe learning disabilities varies widely between and within agencies, thus complicating further existing terminology differences regarding mental health. This increases the risk of children with learning disabilities 'falling through gaps' in services, particularly mental health services. For example, education colleagues often use the term 'learning difficulties', with a moderate learning difficulty equating to the health term mild learning disability. In health terminology 'learning difficulties' refer to specific disorders such as dyslexia.

Transition: Children and young people with learning disabilities are particularly vulnerable during times of transition. They are often sensitive to change in routines and may not be able to communicate their anxieties and needs to those in new services which they enter. Concurrent multiple transitions are common, for example, a young person with difficulties may experience moving from pediatrics to adult health services at the same time as leaving school, moving from children's to adult's social care services and moving to adult mental health services. Maintaining good mental and physical health at this crucial time in growing up can greatly affect future life chances and a disabled young person's ability to participate fully in society (DoH, 2006). Losing young people in the transition to adult health services is likely to increase the risk of avoidable and treatable complications of their conditions (DoH, 2006). CAMHS can provide consultation and support to those in community child health, education and social work who manage the multiple transitions for children with severe and complex needs and advise on the emotional impact of transition on individuals. They can also assist in understanding the impact of other specific issues, for example the're-grieving' of the child's disabilities often experienced by their family at times of transition.

Participation and involvement: The meaningful participation and involvement of children and young people with learning disabilities poses particular challenges to services, due to cognitive impairment and frequent communication difficulties.

Evidence-based services: Service provision and interventions need to be evidence-based. There is considerable evidence for the effectiveness of a variety of interventions for child and adolescent and mental health problems (Roth and Fonagy, 2004; Fonagy, Target et al., 2002). This evidence should be used to inform the development of services for children and adolescents with learning disabilities, who can benefit from many of these approaches. However, there remains a need for specific research into the effectiveness of interventions in this group, whose mental health problems can differ in their pattern and presentation. Specific outcome measures appropriate for children with learning disability and their families are currently being piloted by CAMHS Outcome Research Consortium. Future studies evaluating the clinical effectiveness of CAMHS should include effectiveness for children and young people with learning disabilities.

Consent: Ability to assess the capacity for consent is particularly required by professionals working with children and young people with learning disabilities. Knowledge of the Adults with Incapacity Act (Scottish Executive, 2000ii) is also essential in working with those approaching, or following their 16 ^th birthday.

Early Years - Universal

The need to shift resources towards early intervention is outlined in The Early Years Framework (Scottish Government & COSLA, 2009). The skills of CAMHS practitioners can make a valuable contribution in aiding the development of competencies within universal services working with children with learning disabilities (Box 4) for example, via Primary Mental Health Worker roles. It should be noted that at pre-school age, children are more likely to have a diagnosis of 'global developmental delay', rather than a learning disability.

Box 4: In early years, CAMHS can link with universal services to provide:

• Training and consultation to universal services staff in order to build capacity in understanding the psychological and mental health needs of children with developmental delay, the identification of psychological distress and helpful approaches
• Specific training to staff regarding the presentation and management of mental health problems in young children with developmental delay
• Advice and consultation to Community Child Health services who play a vital role in the early identification and management of children with developmental delay and emerging emotional and behavioural problems
• Advice to professionals regarding the psychological and emotional needs of parents of children with development delays, particularly in the period immediately following diagnosis
• Advice regarding the additional complexities of attachment and infant mental health in this group, including children with autism
• A sharing of knowledge and skills in understanding the impact of disability on families and family relationships, and its potential effects on collaborative working with parents and carers
• Joint work with Health Visitors and other Tier 1 professionals
• Joint assessment clinics with other professionals, e.g. Pediatricians
• Participation in integrated assessment protocols and multi-agency meetings
• Consultation clinics for parents for brief interventions
• Parenting interventions which have an evidence base for children with developmental delay. May be provided by CAMHS or by universal services with consultation and advice from CAMHS

School Years - Universal

Educational needs of children with learning disabilities are now addressed under the Additional Support for Learning Act (Scottish Parliament, 2004). Special Education Needs schools often provide a vital facilitating role for children with complex needs, supporting access to child health, mental health and social services as well as providing important support and advice to families. They are a locus for liaison with further education and adult learning disability health and social services at transition from school. With increasing inclusion of children with learning disabilities into mainstream education, it is important that all schools have knowledge of and links into the appropriate services so that appropriate care is accessed and needs met. The role of CAMHS link worker/Primary Mental Health worker needs to include the mental health needs of children and young people with learning disabilities in mainstream and special education.

If mental health needs are unaddressed, then children with learning disabilities and severe challenging behaviour are at high risk of exclusion from school. Families may be required to provide full time care at home, increasing family stress and leading to a downward spiral - increased family stress further increasing the child's distress and challenging behaviour. A significant group of children with the most severe and complex mental health needs attend residential schools, often outside their local authority and health board area. Such schools often lack easy access to co-ordinated LD- CAMHS services. In such circumstances, mental health problems may remain unaddressed, becoming more entrenched and posing great difficulties in transition back into local adult learning disability services.

Box 5: During school years, CAMHS can link with universal services to provide:

• Training and consultation to universal services staff in order to build capacity in understanding the psychological and mental health needs of children and young people with learning disabilities, the identification of psychological distress and helpful approaches
• Specific training to staff regarding the presentation and management of mental health problems in children and young people with learning disabilities
• Participation in integrated assessment protocols and multi-agency meetings
• Support in adapting interventions to make them appropriate for children with learning disabilities, e.g. emotional literacy, anti-bullying, sex education
• Support for parents and schools in dealing with issues of puberty and adolescence, taking into account the child's learning disability
• Consultation and training to ensure that counselling and other therapeutic Tier 2 services are accessible to children and young people with learning disabilities
• Provide relevant advice to Education Services so they can identify appropriate school environments and placements to meet the social, emotional, developmental and mental health needs of individuals.
• Support in understanding and responding to the emotional impact of teaching and learning
• Support in understanding and responding to the emotional impact on children and families of transitions to primary school, secondary school and to adult services
• Information about local support services, particularly where the child is in mainstream school

Note: During school years, CAMHS can continue to advise staff from universal services on parenting, attachment issues, the effect on the family of ongoing grief and loss and other issues described in the early years section. Continued close liaison with Community Child Health and Hospital Paediatrics ( e.g. Pediatric Neurology) is vital in order to properly assess and manage mental health problems in this group.

Community-Based Activity

Many young people with learning disabilities are supported by independent sector clubs specific to their needs. These, alongside befriending and respite/short break care services accessed via the local authority social work department, have a role in supporting development in adolescence by enabling: access to mainstream culture and leisure opportunities; development of social skills; and provision of a supportive space to explore difficulties or worries. The respite provided to families and siblings by such services also reduces stress levels and promotes positive mental health and family relationships. This can be crucial for families of children with severe challenging behaviour and with severe complex physical disabilities. Without such support families are often also unable to put into place therapeutic strategies developed with the support of LD CAMHS and others.

Box 6: CAMHS can link with community-based organisations to provide:

• Training and consultation to community-based organisations in order to build their staffs' capacity in understanding the psychological and mental health needs of children with learning disabilities, the identification of psychological distress and helpful approaches
• Specific training to staff regarding the presentation and management of mental health problems in children and young people with learning disabilities
• Support and consultation to these systems in relation to specific mental health or challenging behaviour conditions in individuals to allow them to fully benefit and prevent their exclusion from services
• Provision of training on the impact learning disability on other areas, including child protection
• Support for community-based initiatives for addressing issues such as emotional literacy, peer support and counselling, to ensure that the specific needs of children and young people with learning disabilities are taken into account, thus preventing their exclusion from services

Additional and Specific Supports

Children with learning and/or physical disability are recognised by the Framework as being at greater risk of developing mental health problems. They are also likely to be overrepresented in other 'at risk groups' described in the Framework, such as those who are or have been looked after or accommodated; have experienced or are at risk of neglect or abuse; have a chronic or enduring illness; and have communication difficulties (Foundation for People with Learning Disabilities, 2002). Those working with the specific needs of these groups therefore need to be able to identify whether a child or young person has a learning disability and recognise potential mental health problems in such individuals. CAMHS practitioners with specialist knowledge and experience of working with children and young people with learning disabilities need to be available for training, consultation and support to these other specialist services to avoid exclusion and encourage collaborative working.

Specialist mental health services for children and young people with learning disabilities

Generic CAMHS practitioners have many of the competencies required to meet the mental health needs of children and young people with mild learning disabilities. Professional development (for example peer mentoring from practitioners experienced in working with this group) can improve confidence and help practitioners to appropriately adapt their assessments and interventions. Those working with children and young people with moderate and severe learning disability or very complex difficulties need more specific training and experience, with ongoing continuing professional development. In addition to understanding the presentation and treatment of mental health problems in children and young people with learning disabilities, CAMHS practitioners should have experience of the specific issues faced by their families.

The need for children and young people with learning disabilities and mental health difficulties to be able to access mainstream CAMHS services is acknowledged in the Framework. In addition, it recommends planning for the development of specialist CAMHS whose members have training in relation to both children's and young people's mental health and learning disability. Professionals contributing to such specialist ' LD- CAMHS' generally include Nurses (often from a Learning Disability Nurse background), Clinical Psychologists and Psychiatrists. Some services also benefit from Allied Health Professionals, in particular Occupational Therapists and Speech and Language Therapists. However, this is currently rare in the Scottish context.

These specialist multidisciplinary services, by seeing children and young people with learning disability in sufficient numbers and focusing on their needs, are able to attain and maintain specialist expertise and competencies with this population. In addition to direct work, usually with those with the most severe and complex difficulties, they can also resource CAMHS to work with partner agencies in meeting the mental health needs of children and young people with learning disabilities across the Tiers. For example, generic Primary Mental Health Workers should be supported to develop specialist skills, knowledge and practice in working with this group. The needs of children and young people with learning disabilities should be part of all generic mental health training programmes and LD- CAMHS practitioners should be involved in its planning and delivery.

The exact model of how LD- CAMHS services are provided across the Tiers will differ according to local needs and historical developments. What is not acceptable is for generic CAMHS to exclude children with learning disability in the absence of any other form of specialist mental health service provision. From the mapping exercise (Appendix iii), a common emerging model in Scotland for specialist mental health services for children and adolescents with learning disabilities is that of a specialist LD- CAMHS multidisciplinary team, situated within CAMHS and working predominantly at Tier 3. Other models include children and young people with learning disabilities and mental health problems being seen within generic CAMHS or by mental health practitioners based within child health services. In the absence of a dedicated LD- CAMHS service, it is particularly important that staff in generic CAMHS are provided with ongoing training and additional resources to allow them to meet the needs of all children, irrespective of the child's level of functioning.

The 'Mental health care pathway for children and young people with learning disabilities' (Pote & Goodban , 2007) is an important resource for developing local services to ensure that all aspects of mental health provision are considered, whatever the local service model is. The complexity of the children and young people's needs and multiagency services around them require clear, defined and agreed pathways between all Tiers. QINMAC- LD standards (Dugmore & Hurcombe, 2007) allow services to evaluate their provision against national standards. The support of local adult or lifespan Learning Disability services in developing LD- CAMHS services is important, particularly where CAMHS do not have experience of working with children with learning disabilities.

The higher incidence of co-morbidity adds to the complexity and intensity of clinical cases for those working with children and young people with learning disabilities. This, along with routine complex multiagency working and the need to be able to see children at home, school or in other accessible community settings needs to be recognised and reflected in smaller caseloads (Greco et al, 2005). The young person and their family may need to be seen over a longer period of time before change can be expected, which will have implications for throughput of cases. The life-long nature of learning disability and associated conditions such as autism contribute to high rates of re-referral.

There are currently major gaps and variation in knowledge, experience and service provision across Scotland in specialist CAMHS for children and young people with learning disabilities. In particular there is a complete lack of psychiatric inpatient provision for those with the severest disabilities and mental health problems. Emergency and out of hours mental health arrangements for this group are often unclear, and there is a dearth of intensive outreach services. As services strive to develop and improve mental health services for children and young people with learning disabilities, the workforce shortages acknowledged in CAMHS as a whole will be seen to be particularly acute for specialist practitioners skilled in working with this group. CAMHS workforce planners locally and nationally urgently need to take this shortage into consideration. Capacity and skill mix required to meet the additional needs of these children and young people needs to be included in CAMHS workforce planning and workforce figures and capacity calculations need to be adjusted accordingly for this population.

Summary and steps forward

Children and young people with learning disabilities have the same rights as any other child, including timely attention to their mental health needs. It would be a breach of human rights to discriminate on the grounds of IQ, and therefore children and young people with learning disabilities must have the same access to mental health services as those without learning disabilities and to specialist support from learning disability professionals where required. The current piece-meal and ad-hoc service provision of mental health service provision for children with learning disabilities is unacceptable and a specific focus is required from strategic planners across Scotland. Boards will need to take account of the short and long term risks in not addressing the mental health needs of this vulnerable group by providing well co-ordinated and resourced services. (Box 7)

Box 7: Risks of not addressing the mental health needs of children and young people with learning disabilities

Risks to the child or young person

• Impact on psychological well-being, which may lead to deterioration in mental health
• Failure to achieve developmental potential where behaviour is managed or 'contained' rather than addressed therapeutically
• Physical injury caused by severe recurrent self-harm, or arising from carers being unable to cope with or safely manage children's behaviour
• Long term treatment costs and more restrictive environments due to increasing degrees of challenging behaviour
• Inappropriate use of medication with the risk of significant side effects which may be irreversible and chronically disabling
• Exclusion from local educational provision due to unmet mental health needs and/or challenging behaviours
• Exclusion from social and community activities, further reducing important opportunities for development
• Increased risk of all forms of child abuse may result where families lack the capacity to provide appropriate care, or where there is breakdown and social isolation

Risks to the family and other individuals

• Deterioration in mental health of parents, impacting on their relationship with their child, their ability to manage behaviour difficulties and to engage with services and implement advice
• Families providing full time care at home for children with significant mental health problems and/or challenging behaviour due to lack of access to education and other services
• Impact on psychological well-being of siblings
• Impact on siblings' educational, social and other developmental opportunities due to impact on family of unresolved problems relating to the child with learning disabilities
• Family breakdown
• Risk of serious injury to others: family members, carers, school staff, or other children due to serious challenging behavior

Risks to services

• Poor clinical governance: Children's mental health needs not met; ineffective interventions; lack of specialist assessments and evidence-based interventions, including prescription of sedative, rather than symptom-specific, medication to manage challenging behaviour; ineffective professional systems; and increased professional stress and morbidity
• Impact on children's services: increased sibling stress and mental health problems
• Impact on adult services: increased parental stress and mental health problems; problems inadequately treated in childhood impact on adult learning disability services by becoming more entrenched and difficult and costly to treat
• Breakdown of school placement: schools less able to respond appropriately and contain health problems and challenging behaviour
• Costly out of area or specialist placements: resulting from breakdown of school placements and/or the inability of families to care for the child at home and/or breakdown of respite (these factors are interactive). Out of area placement reduces integration with families and local areas and disrupts the transition to adult services. Expensive out-of-area residential schools or social care settings may still lack the expertise, internally or locally, to appropriately identify and address mental health needs
• High cost ad hoc packages of care: due to lack of planned integrated mental health services for children and young people with learning disabilities, including intensive community intervention teams and inpatient services
• Financial overspend: Unmet need is not quantified due to the lack of service pathways so costs may be unpredictable and not planned for in both the short and long term.
• 'Bad press': serious incidentsand /or litigation from families may result from no, poor or inappropriate services that are part of Health Boards' corporate responsibilities.

This document as a whole aims to increase knowledge and awareness of the mental health problems faced by this group and the need to improve and increase service provision. This final section offers guidance for Scottish Health Boards and their CAMH Services attempting to implement the Framework to fully meet the mental health needs of children and young people with learning disabilities. The advice is given with ' GIRFEC' principles (Scottish Executive, 2005ii) in mind.

Public Service Agreement ( PSA) targets (Foundation for People with Learning Disabilities, 2005) are offered as a basis for thinking about planning mental health services for children and adolescents with learning disabilities (Box 8)

Box 8: PSA target: The availability of a full range of CAMHS for children and adolescents who also have a learning disability.

Services should be provided by staff that have the necessary training and competencies to deal with children who [have] learning disabilities. Children and young people with learning disabilities should receive equal access to CAMHS, including:

• Mental health promotion and early intervention (including attention to attachment and parenting issues)
• Training and support to front line professionals, in particular in the recognition of normal development and developmental delay
• Adequately resourced Tiers 2 and 3 learning disability specialist CAMHS with staff with the necessary competencies to address mental health difficulties in children and young people with learning disabilities or pervasive developmental disorders
• Access to Tier 4 services providing in-patient, day-patient and outreach units for children and adolescents with learning disabilities and severe and complex neuro-psychiatric symptomatology.

Steps in the development of comprehensive LD- CAMHS services

There is a need to acknowledge the magnitude of the unmet mental health needs of children and young people with learning disabilities in Scotland and the challenge faced by local services in developing comprehensive CAMH services for this group. With this in mind, 'steps' are provided as guidance for Health Boards as they embark on a pathway towards ensuring the provision of equitable and effective mental health services that include children and young people with learning disabilities. The initial steps can be taken by all and should be achievable within realistic timescales and existing resources. They also form a good basis for the development of comprehensive services described in the later steps. Some Health Boards will have already had some components of the pathway in place.

1. Identify key managers, clinicians and multiagency partners responsible for planning and developing mental health services for this group of children. Depending on local service structures and responsibilities, these are likely to include the following:

• Managers and clinical leads from CAMHS, Child Health and Learning Disability services.
• Education and Social Work colleagues

Input from user and carer organisations and local care provider, voluntary sector and advocacy organisations is invaluable.

2. Define the local demographics

• Extrapolate from population figures (see introduction)
• Adapt figures according to factors such as social deprivation or high densities of children in local residential schools.
• Use information already held within health, education and social services, such as Special Needs Systems.

3. Identify the local mental health services currently available and accessible to this group at each tier of service. Mental health input, especially at Tier 2 will be being provided by various professionals within Child Health, lifespan Learning Disability Services, Education, Social Work and the Voluntary/Independent Sectors. Mapping existing provision and how it links with CAMHS, then developing these links ( e.g. with consultation models) can improve the effectiveness of existing services.

4. Identify the gaps in service provision across the Tiers for this group, using the Framework and this document as a guide.

5. Multiagency/ strategic planning.

• Evaluate funding for services and evidence for their cost-effectiveness across multiple agencies. There needs to be recognition of the impact of services or lack of services in one agency on the work of another. For example, improvements in LD- CAMHS services may not only improve the well-being of children and families but as a consequence also lead to cost savings in education, social care or in later adult learning disability services.
• Address terminology, together with local agencies and practitioners by engaging "in discussion about their differences, with a view to developing shared accounts of the young person's needs" ( PHIS 2003). This applies particularly to terminology around learning disability in addition to that around mental health and disorder.
• Clarify who is responsible for mental health services to children in out of area and residential school placements.

6. Identify workforce needs

• Acknowledge the specialist skills, experience and capacity required to meet the needs of this part of the population (Appendix iv)
• Identify the skills available in the existing workforce across the tiers. For example, behaviour and sleep interventions by Community Child Health staff, Specialist CAMHS, older adolescent and transition work in Learning Disability Services.
• CAMHS Skills for Health (Care Services Improvement Partnership, 2007) can be used to define the competencies required to work with children and young people with learning disability.
• QINMAC- LD Standards (Dugmore & Hurcombe, 2007) make recommendations regarding staff competencies and resources (standard 3.4 – Appendix vi) and workforce planning (standard 8.1-Appendix vii)

7. Build capacity in the workforce

• Improve the skills of staff across the tiers in working with children with learning disabilities and associated mental health problems by incorporating their needs into CPD programmes.
• The developing Scottish LD- CAMHS Network can provide professional support for practitioners
• CAMHS can make links with local Learning Disability Services who may be able to provide training, service development advice and clinical consultation. Consideration could be given to liaison work between CAMHS and LD services, secondments or identifying LD 'champions' in CAMHS.

8. Develop care pathways for this group

• The care pathway developed by the 'Do Once and Share' Project (Pote and Goodban, 2007) is recommended as an invaluable resource to local services.
• Benchmarking against this model of interagency working will help local services to identify what improvements need to be made.
• Establish a transition pathway with education, adult health, social care, and learning disability services to provide continuity of clinical care, inform person-centred planning and provide continuing education/vocational training. Health Action Plans can be used to ensure individuals' continued access to services they need to stay healthy and do not 'fall between' services.

9. Fill the gaps and develop services

• The ' QINMAC- LD' standards (Dugmore & Hurcombe, 2007), are recommended as standards for the provision of Tier 2 and 3 mental health services for children and young people with learning disabilities. Services may wish to consider joining the ' QINMAC- LD' network to take part in peer-review of services.
• See appendix iv and appendix vi for further detail
• Tier 2 services themselves often need building up and strengthening to ensure the capacity to provide developmental assessments and interventions for difficulties with (for example), behaviour, communication and sleep. Tier 3 support, consultation and training should be made available to Tier 2 services.

• Tier 3 mental health services, usually in the form of specialist multidisciplinary teams should be available to all children and young people with learning disabilities.
• Tier 4 intensive community treatment and in-patient facilities, particularly for children and adolescents with moderate to severe learning disability and serious mental health problems need to be available across all Health Boards.

References

Bernard S & Turk J (2009). Developing Mental Health Services for Children and Adolescents with Learning Disabilities. A Toolkit for Clinicians. The Royal College of Psychiatrists, London.

Care Services Improvement Partnership (2007) Core Functions: Child and Adolescent Mental Health Services Tiers 3 & 4. Skills for Health

Childhood Dementias: Report from a professionals meeting at the Dementia Services Development Centre, Stirling, 2008

Department of Health and Department for Education and Skills (2004). National Service Framework for Children, Young People and Maternity Services: The Mental Health and Psychological Wellbeing of Children and Young People.

Department of Health (2003) National Service Framework for Children Child & Adolescent Mental Health & Psychological Well Being External Working Group Learning Disability Paper. Key issues in meeting mental health needs for children and adolescents with learning disabilities.

Department of Health (2006). Transition: getting it right for young people. Improving the transition of young people with long term conditions from children's to adult health services.

Dugmore, O., and Hurcombe, R. (2007) Quality Improvement Network for Multi- Agency CAMHS: Learning Disability Standards. Royal College of Psychiatrists.

Emerson, E., Cummings, R., Barrett, S., Hughes, H., McCool, C & Toogood, A (1988). Challenging behaviour and community services: 2. Who are the people who challenge services? Mental Handicap, 16, 16-19.

Emerson, E. (2003) Prevalence of psychiatric disorders in children and adolescents with and without intellectual disability. Journal of Intellectual Disability Research, 47 (pt 1): 51-58.

Emerson, E., & Hatton, C. (2007) Mental health of children and adolescents with intellectual disabilities in Britain . British Journal of Psychiatry, 191: 493-499

Fidler, D. J., Hodapp, R. M., & Dykens, E. M. (2000). Stress in families of young children with Down syndrome, Williams syndrome, and Smith-Magenis syndrome. Early Education & Development, 11, 395–406.

Fonagy, P., Target, M., and Cottrell, D. (2002) What Works for Whom? A Critical Review of treatments for Children and Adolescents. Guilford Publications: New York.

Foundation for People with Learning Disabilities (2002). Count Us In; The report of the committee of inquiry into meeting the mental health needs of young people with learning disabilities. London, Foundation for People with Learning Disabilities/The Mental Health Foundation : 114.

www.learningdisabilities.org.uk/publications

Foundation for People with Learning Disabilities (2005).Services for children and adolescents with learning disabilities and mental health problems. A managed care approach. Summary.

Foundation for People with Learning Disabilities, (2006). This is what we want.

www.learningdisabilities.org.uk/publications/?esctl539273...char

General Register Office for Scotland (2008) Mid-2007 Population Estimates Scotland

Greco, V., Sloper, P., Webb, R., and Beecham, J. (2005) An exploration of different models of multi-agency partnerships in key worker services for disable children: effectiveness and costs. SPRU report, York, York University.

NHS Health Scotland (2004). People with Learning Disabilities in Scotland: Needs Assessment Report.

Pote H & Goodban D (2007). A mental health care pathway for children and young people with learning disabilities: A resource pack for service planners and practitioners. University College London & Anna Freud Centre.

Public Health Institute of Scotland (2001). Autistic Spectrum Disorders: Needs Assessment Report.

Public Health Institute of Scotland (2003). Needs Assessment Report on Child and Adolescent Mental Health.

Roth, A and Fonagy, P (2004) What Works for Whom? A Critical Review of psychotherapy Research. The Guildford Press: New York

Royal College of Psychiatry (2010). Psychiatric services for children and adolescents with intellectual disabilities. College Report CR163 October 2010, RCP London.

Scottish Executive (2000i). The same as you? A review of services for people with learning disabilities.

Scottish Executive, (2000ii) Adults with Incapacity (Scotland) Act 2000

http://www.opsi.gov.uk/legislation/scotland/acts2000/asp_20000004_en_1

Scottish Executive (2004). Psychiatric Inpatient Services in Scotland: A Way Forward, Child Health Support Group Inpatient Working Group

http://www.scotland.gov.uk/Publications/2005/01/20523/49969

Scottish Executive (2005i). Children and Young People's Mental Health: A Framework for Promotion Prevention and Care

http://www.scotland.gov.uk/consultations/health/cypmh-00.asp

Scottish Executive (2005ii) Getting It Right For Every Child,

http://www.scotland.gov.uk/Publications/2005/06/20135608/56098

Scottish Executive (2005iii). Health for All Children 4: Guidance on Implementation in Scotland.

www.scotland.gov.uk/Publications/2005/04/15161325/13269

Scottish Executive (2006). Changing Childhoods? Report of the Children's Sub Group

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The Scottish Government & COSLA (2009). The Early Years Framework.

http://www.scotland.gov.uk/Publications/2009/01/13095148/0

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The Scottish Parliament (2009). Health and Sports Committee. 7 ^th Report: Inquiry into child and adolescent mental health and well-being.

Appendices

Appendix i

Definition of Challenging behaviour: "Behaviour of such an intensity, frequency or duration that the physical safety of the person or others is likely to be placed in serious jeopardy, or behaviour which is likely to seriously limit or deny access to and use of ordinary community facilities. (Emerson et al, 1988)

Appendix ii

Estimated numbers of children under 16 with learning disability and mental health problems in Scotland, using figures taken from the 2007 Census (General Register Office for Scotland, 2008).

Total population of Scotland	5,144,200
Children 16 and under was 18%	925,956
Children with Learning disability estimated at 3.5%	32,408
Children with learning likely to have a diagnosable psychiatric disorder 35-40%	Between 11,342 and 12,963

Appendix iii

LD- CAMHS Scotland- mapping of current service provision (as of April 2010)

The following table gives the results of an initial mapping of LD- CAMHS provision across Scotland. It is based on the knowledge of services by members of the Scottish LD- CAMHS network, the Scottish Senior LD Nurse network and the Scottish CAMHS Lead Clinicians. While the Framework document as a whole looks at mental health services across all Tiers for children with learning disabilities, this mapping focuses on Tier 3 and 4 services, with some comments about Tier 2 services in some areas. Consideration should be given as to whether a more comprehensive national mapping needs to be carried out across all Tiers, as part of a wider needs assessment.

Appendix iii LD- CAMHS Mapping based on information supplied to the LD CAMHS Scotland Network as of April 2011

Area	Population ( GRO 2008 estimates - 2009 data from ISD Scotland CAMHS Workforce Project 2009)	Recommend-ed workforce (ref Appendix iv) For T2-T3 LD- CAMHS; mild- severe levels of LD.	Dedicated LD- CAMHS Workforce (including vacancies)	Service structure/ development: describes how needs are met across tiers, where service sits, who holds the focus for LD- CAMH needs.			Reps on Scotland LD— CAMHS Network Committee
				TIERS	LD SPECIFIC	GENERIC INTEGRATION
Ayrshire and Arran	367,510	18-22			Rainbow House- resource for children with developmental delay. Plans for ASD and LD, complex needs pathways. 2 transition nurses attached to Adult LD services for YP with complex needs, link with CAMHS.	Have forum for discussion with CAMHS for children seen in Community Paediatric Service. Regular joint management meetings of CAMHS and Children's services.	Alan James Clinical Psychology alan.james@aapct.scot.nhs.uk
Borders	112,430	5.5-6.5	0.2 CAMHS consultant psychiatrist 1.0 clinical psychologist 0.5 OT 0.3 SALT 1.0 LD- nurse (currently vacant)		Dedicated LD- CAMHS team for moderate to severe LD and challenging behaviour	Moving towards a fully integrated service with generic CAMHS. CAMHS see young people regardless of disability	Ellen Baird SLT Ellen.Baird@borders.scot.nhs.uk
Dumfries and Galloway	148,580	7.5-9	0.1 Consultant Clinical Psychologist		NHS staff in short stay respite unit.	CAMHS psychiatrists see children with LD.	Bruce Kidd Cons Clinical Psychologist wkidd@nhs.net
Fife	361,815	18-22	Tier 2: 2 wte child LD nurses Tier 3: 1 wte consultant clinical psychologist, 1.5 wte clinical psychologist, 2x 0.5 doctoral trainee psychologists, 1.5 child development nurses (1 Community LD charge nurse & 0.5 CAMHS nurse)	Tier 2 Tier 3	Dedicated Child Learning Disability nurses provide the service for LD and Primary Mental Health Care needs. Psychological and Mental Health services provided by Clinical Psychologists and Doctoral Trainees, Child Development Nurses. Plan for 0.6 Consultant Psychiatry post. LD Transition Nurse post.	Service sits within Child Health. Combines a stepped care pathway, team around the child/ adapted CPA model. CAMHS see mild LD.	Tracey Watson Nurse tracywatson2@nhs.net
Forth Valley	290,047	14.5-17.5	0.5 staff grade psychiatrist 0.5 clinical psychologist 0.2 Consultant Psychiatrist				Dorothy Laing Psychiatry (Associate Specialist) dorothylaing@nhs.net
Grampian	539,630	27-32	1 consultant psychiatrist- for Aberdeenshire (cover for Orkney and Shetland) 2 specialist nurses 1 clinical psychologist ------------------------------------ 2 consultant psychiatrists- Moray			Within CAMHS. Clinical Genetics and CAMHS have joint clinics for assessment and management where child with LD is referred to CAMHS/ child with complex LD referred to CG. CAMHS see LD children	Dee Rasalam Psychiatry adrasalam@nhs.net
Glasgow Clyde	1,194,675	60-72	1 consultant psychiatrist 5 clinical psychologists (4.1 wte: 0.7 consultant wte + 3.4 wte ) 4 nurses (1wte nurse specialist + 3wte nurse therapists) 1 SLT (1 wte) 1 OT (1 wte) 2 support workers (2 wte)	Tier 2 Tier 3 & 4	LD- CAMHS links with special needs school 'Joint Support Meetings' (children and family social work/ SHS/ education/ educational psychology/ LD- CAMHS) to facilitate joint working/ offer consultation re cases. Dedicated multidisciplinary LD- CAMHS team for moderate to severe LD. Tier 3 / Tier 4 provision. Greater Glasgow area with consultation to Clyde. 5-18 years Glasgow LD- CAMHS provide consultation/ support to CAMHS teams taking on LD cases.	Tier 2 mental health / psychological services for C& YP with LD unable to meet demand. Within CAMHS services structures where mild LD is seen with support from LD- CAMHS. National Child IPU admits LD. West of Scotland adolescent IPU admits mild LD, some moderate with support from LD- CAMHS team.	Lorna Fitzsimmons Nurse Lorna.Fitzsimmons@ggc.scot.nhs.uk
Highland	309,900	15.5-18.5	1 consultant clinical psychologist 1.5 principal clinical psychologist		Developing: joint clinic between Child and Adolescent Psychiatry and Clinical Psychology for young people with complex mental health needs. CAMHS does not see those with LD routinely but discussions are ongoing about this.	For NHS Highland (generally not Argyll and Bute) and do not cover the Western Isles. Two multi-agency Children and Families Affected by Disabilities Teams do some work on Mental health Issues. Do not completely cover the region. Multi-agency centre for Children and Families affected by ASD.	Morag Watson Clinical Psychologist Morag.Watson@nhs.net
Lanark - shire	561,174	28-33.5	1 Clinical psychologist 2 Specialist Nurses 1.2 consultant psychiatrists	Tier 2 Tier 3 Tier 4	Mapping Tier 2 provision across Lanarkshire – significant gaps identified ( e.g. no post diagnostic input for autism, OT exclude children with autism form input from their service) Dedicated LD- CAMHS team located within CAMH services. For children with moderate to profound LD. No specialist Tier 4 service available	CAMHS teams expected to provide services to those with mild LD.	Susie Gibbs Psychiatry Susie.Gibbs@lanarkshire.scot.nhs.uk
Lothian	817,722	41-49	0.8 consultant psychiatrist 1 consultant psychologist 0.5 clinical psychologist linked with Action For Children respite service Clinical Associate Psychologist for Early Intervention	Tier 2 Tier 3 Tier 4	Care pathway jointly with Tier 2 using 'Do Once and Share' guidance. Joint assessment and consultation in CCHDCs. Psychological input provided in conjunction with Tier 2 services. Training/ liaison/ ongoing evaluation of outcomes for families. Early years' service: work alongside Paediatric and AHP services to identify infants and children at risk of developing behaviour problems because of their LD/ ASD/additional health problems. For moderate / severe LD 0-16years. LD Lifespan Services: CLDN have up to 30% of caseload for children-consultation with consultant clinical psychologist in LD- CAMHS. Link to Action For Children residential respite service: 4 beds able to offer assessment for children with severe challenging behaviour. Proposal being considered for intensive community intervention service, to include clinical psychology, nursing, SLT and OT, in addition to tier 3 outpatient service.	Within CAMHS. CAMHS see children with mild LD and ASD without learning disability. T4-Adult LD inpatient unit and CAMHS YPU currently used.	Helen Downie Clinical Psychology Helen.Downie@nhslothian.scot.nhs.uk
Orkney	19,890	1-1.2	Cover from Grampian consultant				Link to Dr Dee Rasalam Psychiatry adrasalam@nhs.net
Shetland	21,980	1-1.3	1 consultant psychologist			Covers all children's services	Link to Dr Dee Rasalam Psychiatry adrasalam@nhs.net
Tayside	396,942	20-24	LD/ ASD Team 1.6 Psychiatry 1.0 Clinical Psychology 1.5 Nurse Specialists 0.2 OT 0.2 Family Therapy ASD Team < 0.1 Psychiatry 0.2 Clinical Psychology 2.5 Nurse Specialists 0.1 OT 1.0 SLT < 0.1 Paediatrician		CAMHS LD/ ASD team for moderate to severe LD/ and ASD (with and without LD) Overlap with ASD assessment pathway for those with and without LD.		Dr Halina Rzepecka Clinical Psychology halina.rzepecka@nhs.net
Western Isles	26,200	1.3-1.5			Community LD Nursing have role across lifespan		Charlie Hill Community LD Nurse charliehill@nhs.net

Appendix iv

Recommended staffing levels and specialist skills

'Key Issues in Meeting Mental Health Needs for Children and Adolescents with Learning Disabilities' (Department of Health, 2003) produced by the child and adolescent mental health and psychological wellbeing external working group made the following recommendations:

• 'Those working with children and adolescents with learning disability need expertise in three areas:

- Working with children (and/or) adolescents

- Working with learning disabilities

- Working with the specific mental health difficulties presented'.

• 'Staffing levels for Tier 2/3 learning disability CAMH services will need to be of the order of 5-6 wte per 100,000 general population in order to provide accessible services equitable with those available to children and adolescents without learning disabilities. (These estimates are derived from the higher incidence of conduct disorders, attention and anxiety disorders, and autistic spectrum disorders within the learning disability child and adolescent population; from the higher incidence of co-morbidity in this population; and from projections from existing staffing levels.)'

• Tier 4 highly specialist outreach and inpatient services are also required for children and adolescents with learning disabilities, although there are different methods of provision. Indications are that 3-4 beds per million are needed for those with severe learning disabilities, 2-3 beds per million for those with mild to moderate learning disabilities, and 1 bed per million low secure adolescent provision'. They also note that medium secure provision needs to be considered.

In addition, the Royal College of Psychiatrists Report CR163 (Royal College of Psychiatry, 2010) gives detailed recommendations regarding workforce and service provision, including:

• For Psychiatry, the College suggests that a service to young people with severe learning disabilities requires a minimum of two sessions of adequately trained consultant time per 100, 000 population. The inclusion of young people with mild learning disabilities requires a further three sessions. This level reflects 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. These sessions do not include time for administration and training.

• In-patient provision for young people with Autistic Spectrum disorders or challenging behaviours may require higher staffing ratios than in other in-patient units, as well as robust and well-structured physical environment.

• In addition to Psychiatry and Clinical Psychology other professionals recommended for multidisciplinary teams include nurses (trained in Learning Disability, Mental Health or Child Health); Speech and Language Therapists for key problem of communication; and Occupational Therapists for interventions including sensory integration. Access to other CAMHS therapists from wider CAMHS service is also recommended, e.g. Physiotherapy, Music, Art and Play Therapy.

Appendix v

The LD CAMHS Scotland Network is a multidisciplinary network of clinicians working in the field of mental health with children and young people with learning disabilities. Regular national meetings are held which combine academic presentations and workshops with an opportunity for peer support and supervision, as well as sharing and developing good practice in service provision. A committee which contains representatives/links from all Health Board areas coordinates the network and is able to organise LD CAMHS representation for appropriate national committees and work-streams. Members are also able to comment and provide opinions when asked on matters relating to the mental health of children and adolescents with learning disabilities, gathering and representing the opinion of the majority of Scottish clinicians working in this field. The contact details for network representatives for each Health Board area are contained within the mapping appendix. Contacts for general enquiries are as follows:

Name	Committee Position	Professional representative	Contact Details
Lorna Fitzsimmons	Chair	Nursing	Lorna.Fitzsimmons@ggc.scot.nhs.uk
Tracy Watson	Secretary		tracywatson2@nhs.net
Susie Gibbs	Membership Secretary & mapping/Database coordinator		susie.gibbs@lanarkshire.scot.nhs.uk
Ellen Baird		Speech and Language Therapy	Ellen.Baird@borders.scot.nhs.uk
Nuno Cordeiro		Paediatrics	Nuno.Cordeiro@aapct.scot.nhs.uk
Fiona Gellatly		Occupational Therapy	Fiona.Gellatly@ggc.scot.nhs.uk
Alan James		Clinical Psychology	alan.james@aapct.scot.nhs.uk
Dee Rasalam		Psychiatry	adrasalam@nhs.net

Appendix vi

QINMAC Standard 3.4: Staff have the necessary competencies and resources to conduct assessments and arrange the next steps

3.4.1 - Young people are assessed by staff who have appropriate competencies in learning disability and mental health to conduct the assessment and co-ordinate next steps, or by staff who have appropriate supervision from professionals with these competencies

3.4.2 - Where assessments are made by a single practitioner, the clinician conducting the assessment is able to gain multidisciplinary input on the case as needed

3.4.3 - Staff who are involved in clinical assessments have an agreed pathway to facilitate prompt access to medical investigation

3.4.4 - Staff follow established protocols and good practice ( e.g. NICE guidelines) when assessing young people with learning disabilities and mental health problems

Appendix vii

QINMAC Standard 8.1: There are sufficient numbers of appropriately skilled staff

8.1.1 - There are sufficient numbers of skilled staff to effectively meet the mental health needs of young people with learning disabilities in the locality

8.1.2 - The numbers of qualified personnel and support staff are determined by analyses of demand and capacity, set against the core business agreed between the service and its commissioner(s)

8.1.3 - Capacity calculations take full account of the time-intensiveness of the multi-agency co-ordination that is often required when working with young people with learning disabilities and mental health problems

8.1.4 - The numbers of qualified personnel and support staff are determined by conducting a skill mix review, set against the core business agreed between the service and its commissioner(s)

8.1.5 - There are 5-6 staff per 100,000 total population who are designated to meet the needs of young people with learning disabilities

8.1.6 - There are 0.5 WTE psychiatrists per 100,000 total population who are designated to meet the needs of young people with learning disabilities

8.1.7 - A review of staffing needs is held at defined intervals and when there are changes in service provision

8.1.8 - Staffing levels reflect the commitments of staff to engage in training, supervision and mentoring and their requirements for continuing professional development

8.1.9 - Staffing levels reflect the commitments of staff who provide training and consultation to other services and who undertake additional duties

8.1.10 - When posts are vacant or in the event of long term sickness or maternity leave, prompt arrangements are made for staff cover

8.1.11 - Effort is made to ensure the workforce is representative of the community served