CITY & COUNTY OF SWANSEA ADHD GUIDELINES

CITY & COUNTY OF SWANSEA ADHD GUIDELINES

CITY & COUNTY OF SWANSEA ADHD GUIDELINES (amended version January 2010) Page Introduction 3 The Definition of Attention Deficit Hyperactivity Disorder (ADHD) 4 Differing Perspectives 4 A Multidisciplinary Approach 6 1. Identification and Referral 7 2. Assessment & Diagnosis 8 3. Treatment and Management 10 Education factors 11 Medication 12 Monitoring 13 Appendices: 1. DSM IV diagnostic criteria for Attention Deficit Hyperactivity Disorder 14/15 2. ICD-10 diagnostic criteria for Hyperkinetic Disorder 16 3. School Referrals to Community Paediatrician for ADHD screening 17 4. Referral Pathway flow chart 18 5. Flow Chart for medical assessment, treatment & follow up of children with ADHD 19/20 6. Standard letter requesting school report 21 7. Assessment Framework Diagram 22 8. Example of medicine administration form for schools and consent forms 23/24 9. References and further reading 25/27 10. Useful contacts re- Attention Deficit Hyperactivity Disorder 28 2

Introduction The principal aims of these guidelines are 1. To promote a shared multi-agency understanding of Attention Deficit Hyperactivity Disorder (ADHD). 2. To offer a framework for the identification, assessment, management and care of school aged children and young people who are presenting with a range of behaviours and emotions which can be considered within the criteria for ADHD/hyperkinetic disorder (HKD) as defined by DSM-IV and ICD-10 respectively. 3. To enable professionals from different disciplines and different agencies involved in the care of children and young people, to work together effectively in the interests of the children and families. Acknowledgements These guidelines have been produced in consultation with a multidisciplinary group of professionals from the following agencies: Cwm Taf Health Board Dr Gill Salmon and Mr Nigel Mason (Child & Adolescent Mental Health Service, Trehafod) Abertawe Bro Morgannwg University Health Board Dr Carolyn Samuel Education Department, City and County of Swansea Catherine Morgan, Lesley Williams and Stuart Forbes Social Services Department, City and County of Swansea Lindsay Harper (initial version) SNAP-Cymru Hania Opera The document also draws on Guidelines for the identification and management of Attention Deficit Hyperactivity Disorder developed in other regions of the UK. Abbreviations used in document ADHD = Attention Deficit Hyperactivity Disorder HKD = Hyperkinetic Disorder IEP = Individual Education Plan LEA = Local Education Authority LHB = Local Health Board SDQ = Strengths and Difficulties Questionnaire SEN = Special Educational Need SENCo= Special Educational Needs Co-ordinator TA = Teaching Assistant 3

The Definition of ADHD ADHD is characterised by a triad of behaviours which include overactivity, inattention and impulsivity. For a diagnosis of ADHD to be applied, these behaviours should be present to an extent which is unwarranted for the developmental age of the individual concerned and which significantly hinders their social, educational and emotional well being. The behaviours will have lasted for more than 6 months and will usually have been present before the age of 7 years. They will also be evident in more than one setting, including at home and at school. There have been two sets of diagnostic criteria in use in recent times; the American Diagnostic and Statistical Manual of Mental Disorders (1994, known as DSM-IV, see appendix 1) and the European International Classification of Diseases (1990, known as ICD-10, see appendix 2). Both classifications utilise lists of behaviours to consider in the process of diagnosing hyperactive conditions. The list of behaviours is essentially the same, however, the DSM-IV lists of items, allow for the existence of sub-types of ADHD depending on the balance of symptoms of inattention and hyperactivity-impulsiveness. The majority of children receiving the diagnosis of ADHD in the UK are both inattentive and hyperactive/impulsive (i.e. ADHD-combined-type). This is roughly equivalent to the ICD-10 diagnosis of hyperkinetic disorder (HKD). According to the National Institute for Health and Clinical Excellence (NICE, 2008) clinical guideline 72 Attention Deficit Hyperactivity Disorder: Diagnosis and management of ADHD in children, young people and adults, moderate ADHD in children and young people is taken to be present when the symptoms of hyperactivity/impulsivity and /or inattention, or all three, occur together, and are associated with at least moderate impairment, which should be present in multiple settings (e.g. home and school or a healthcare setting) and in multiple domains (p.5) e.g. achievements at school and forming positive relationships with family and peers etc. Severe ADHD corresponds approximately to the ICD-10 diagnosis of hyperkinetic disorder. This is defined as when hyperactivity, impulsivity and inattention are all present in multiple settings and when impairment is severe (i.e. affects multiple domains in multiple settings) (p.6). Differing perspectives In order for different disciplines to work effectively together, it is important to be aware of the issues raised by a diagnosis of ADHD. There is no one right way of thinking and a willingness to understand and accommodate different perspectives is essential to collaborative working. A Medical Perspective Children with ADHD have difficulties that affect their behaviour, their social relationships and their ability to learn in home and in school. The way in which European and American clinicians use the terms ADHD and HKD suggests that there is an assumption that it is a condition with a common underlying genetic predisposition, identifiable psychological dysfunction and ultimately identifiable psycho-physiological factors. Put simply, the implication is that ADHD is a reflection of an underlying deficit that may have several ultimate causes but a common pathway at the behavioural level. In many milder cases, careful management of behaviour and advice both to parents and teachers working with the child to control impulsiveness and maintain concentration may be sufficient to 4

manage the problems. Behavioural interventions such as referral to a group parent training/education programme should be seen as the initial treatment of choice if a child or young person has been diagnosed with ADHD and has moderate levels of impairment. Where these are not deemed to be sufficient, or when the school aged child or young person has severe ADHD, medication may be also required to assist the process. This is a matter to be decided by the clinical judgement of the doctor who is managing the child in consultation with those who have day to day care of the child. It has been shown that the symptoms of ADHD can, in a large proportion of cases (~~70%-80%), be moderated by the use of stimulant medication. The medication stimulates inhibitory mechanisms in the brain, this helps to control impulsiveness and to help the child to be more able to attend and concentrate. This enables parents and teachers to help children to regain control of their behaviour and enables them to learn. Stimulant medication has now been in use since the 1950 s, particularly in North America and Australia and experience indicates that the benefits usually outweigh the problems that may arise. Proper monitoring is, of course, essential. A Cultural Perspective ADHD can be viewed as being a socially constructed disorder. Some children are inherently more inclined to be inattentive, impulsive and hyperactive than others. Such children may find it hard to conform to what is expected of them and can be very difficult to manage. It is not surprising that such traits run in families and that there seems to be a genetic predisposition to them. Mental traits can be inherited just as height and body shape. What we are dealing with are normal human differences that are only construed as being disorders when they are in conflict with cultural expectations and norms. The problem with the ADHD label is that difficult decisions about individual children can be oversimplified as they come to be seen as one of a group requiring treatment. The decision to control behaviour through the use of medication is a difficult one - and should be so. By labelling children with difficult behaviour as suffering from a disorder, we make it easier to treat the child and this carries with it the danger of over-prescription as an expedient way of dealing with complex problems. An over-stretched health service is particularly at risk of seeking quick and easy solutions, which may be compounded by poor monitoring. An Educational Perspective Children develop at different rates and in different ways because of the complex interplay of biology and environment. It is therefore important to adopt different teaching approaches to meet individual needs. If class teachers are unable to meet a child s needs in this way then additional support should be provided to help them do so. The Special Educational Needs Code of Practice advocates a staged approach to meeting special educational needs. From the outset there should be a dialogue between teachers and parents to ensure that action at home and at school is co-ordinated. Depending on the age of the child, their views should also be considered. Where necessary, the school should be able to call upon outside resources, such as the Educational Psychologist and/or the behaviour Specialist Teacher, to advise and assist them. Involvement of the community paediatrician initially and later the Child and Adolescent Mental Health Service will also be helpful in the assessment process if ADHD is suspected. Medication may help the child to respond to these efforts but it should be part of a multidisciplinary effort. The prescribing doctor should participate in monitoring and reviewing the child s progress with the school and parents. The role of the school in providing feedback on the child during the initial trial of medication and as part of the follow up procedure cannot be overemphasised. 5

A Parent s Perspective When told that a child has a chronic disorder such as ADHD, parents may experience a period of grieving. Relief at finding a reason for their child s difficulties over the years is superseded by feelings of guilt for the negative way they have been feeling about the child s behaviour and a sense of failure as a parent. Parents may feel that everyone blames them for their child s behaviour and the diagnosis confirms that it is not simply their fault. Parents are frequently being called into the school because of problems there and yet it is hard enough for them to deal with things at home. Home life is often stressed, with strained marriages and isolated siblings. There is an above average level of divorce in families with a child with ADHD. After diagnosis, parents often feel out on a limb and efforts to liaise with a range of professionals are often left to the parents. Already demoralised and feeling overwhelmed by issues such as medication and the need to obtain special educational support, parents can be left with a sense of being faced by layers of bureaucracy which seem insurmountable. This view reinforces the necessity for a coordinated approach between agencies. A Social Services Perspective The Social Services department of the City and County of Swansea supports the implementation of these guidelines to promote a multidisciplinary approach to meeting the assessed needs of children and their families. Any Social Services involvement needs to be placed within the overall context of the Framework for the Assessment of Children in Need and their Families (National Assembly for Wales, 2000). Where a Child and Adolescent Psychiatrist or paediatrician with special expertise in ADHD has made a formal diagnosis of ADHD and is of the opinion that social work intervention may be required, then they will need to obtain parental consent for a referral to the appropriate Access and Information Team for an initial assessment to determine service provision/ core assessment. Where the presenting needs are complex it may be more appropriate for the referring doctor to convene a multi-disciplinary planning meeting involving the parents to which the team leader of the relevant Access and Information Team be invited in order to ensure a co-ordinated approach. A Multidisciplinary Approach A multidisciplinary approach, which focuses on the needs of the child, is essential to any model of good practice. Whilst acknowledging the differing perspectives presented above, there are clear areas of agreement which should enable the various disciplines involved to develop ways of working together in the interests of the children and their families: some children present with inattentive, impulsive and hyperactive behaviours that are more difficult to manage than in the majority of the population; these behaviours can bring the child into conflict with others and can adversely affect emotional well being and academic and social learning; a variety of biological and environmental factors can underlie the behaviour that such children exhibit and it is necessary therefore that those who live and work with the child are closely involved in any analysis or diagnosis of the problem; it is those who live and work with the child on a daily basis e.g. parents or carers and teachers who will need to implement, and monitor the effects of any intervention and who must therefore be closely involved in decisions about management or treatment. the desirable long-term aim of any intervention is to enable the child to achieve their full potential emotionally, academically, and socially. The following guidelines address ways in which these areas of agreement can be utilised to develop joint working arrangements between the various professional groups working with school aged children who present the problems associated with ADHD within the City & County of Swansea. 6

Joint Guidelines for Managing ADHD Cases These guidelines consider four stages involved in the management of ADHD: 1. Identification & Referral; 2. Assessment and Diagnosis; 3. Management & Medication; 4. Monitoring. 1. IDENTIFICATION AND REFERRAL Children presenting with indications of ADHD may be identified in a range of settings and by various carers and professionals: Family / Parents / Carers GP Health Visitors / School Nurses / School Nursery Nurses Playgroups/ nurseries/ family centres (for pre-school aged children) Schools and Education Professionals Social Workers Professionals working within Child & Adolescent Mental Health Services Paediatricians Therefore the initial referral route will differ both according to the age of the child (pre-school or school age) and to the context in which concerns are initially expressed. Not all children and young people presenting with difficulties suggestive of ADHD will warrant a specialist referral. This will depend on the severity of the child s difficulties and their responses to initial behavioural interventions. A) Staff in early years centres, nurseries or playgroups should discuss their concerns with parents and may consult with the child s health visitor. For pre-school aged children, a referral to the community paediatrician, particularly where there are other concerns about the child s development will usually form the part of the initial assessment. B) Parents often discuss their concerns with the school or approach their health visitor, school nursery nurse or GP for advice. Where ADHD is suspected in a child of school age, parents should be encouraged to discuss their concerns with their child s teacher or SENCo in line with the locally agreed procedures (see appendix 4). C) Schools should always follow their procedures for the assessment and identification of special educational needs, in accordance with their SEN policy. Where ADHD is suspected, the school should always consult parents and may propose the involvement of other services. The school s educational psychologist and/or behaviour specialist teacher will be able to advise on the necessity for educational assessments and interventions and whether or not referral to the community paediatrician for a medical assessment and initial ADHD screening is warranted (see appendix 3 for further information). Given the range of situations in which ADHD may present, professionals at all tiers should have access to common understandings of what does and does not constitute a potential ADHD presentation. When presented with a child or young person for whom a referral for an ADHD assessment may be considered, the referrer should take account of the DSM IV criteria for ADHD - combined type or ICD-10 - criteria for hyperkinetic disorder (see appendix 1 & 2). 7

2. ASSESSMENT & DIAGNOSIS (see appendix 5) According to the National Institute for Health and Clinical Excellence (NICE, 2008) clinical guideline 72 Attention Deficit Hyperactivity Disorder: Diagnosis and management of ADHD in children, young people and adults, A diagnosis of ADHD should only be made by a specialist psychiatrist, paediatrician or other appropriately qualified healthcare professional with training and expertise in the diagnosis of ADHD (p.20). The assessment process may involve a multidisciplinary team approach and the professional concerned would normally seek parental permission to request and obtain relevant information from other involved professionals and agencies. The medical assessment has three principle components: 1. Information gathering All parents/carers should be asked to complete standardised behaviour rating scales, such as the Conners and/or Strengths and Difficulties Questionnaire (SDQ). As well as helping in the assessment phase, such questionnaires can also be used to provide baseline information against which to assess the impact of any intervention. Parental permission should be sought to gather other information e.g. from the child s teacher and/or from other involved professionals. Teaching staff as appropriate should complete the standardised questionnaires Conners and SDQ if requested. (See appendix 6 for example of a standard letter requesting a school report). The school s Special Educational Needs Co-ordinator (SENCo) will usually be responsible for providing the relevant information and written school reports. In some schools, however, this role will be taken on by the headteacher or head of year. Information about the child s Individual Education Plan (IEP) for managing the child s behaviour should be obtained along with educational psychology reports and reports from other involved professionals if available. All children diagnosed as having ADHD can reasonably be expected to be at least at School Action Plus of the SEN Code of Practice. This also applies to children in nursery classes in LEA schools. By local agreement, children who have already been referred by the school to an educational psychologist and/ or behaviour specialist teacher, however, will be prioritised for assessments within the Child & Adolescent Mental Health Services in the City & County of Swansea. 2. Interview with the child and the parents or carers to gather information about: presenting difficulties including history of the presenting problem in different domains and settings of the person s every day life; family history; family constellation and family functioning; the child s developmental history; the child s medical history; anxiety levels; self esteem of child; peer relationships and social skills; the wider systems such as educational progress, social services involvement; expectations of the child and parents/or carers re-any possible diagnoses and further management. 3. Observation Observation of the child in the classroom setting by a professional such as a behaviour specialist teacher or educational psychologist or in the clinical setting by the specialist service may be helpful to assess: 8

general level of activity and talkativeness; distractibility; interruptions; play skills - particularly problem solving and constructional toys; attention span. 4. Other components to be considered: Full physical examination by community paediatrician to include check of vision, hearing and cardiovascular system with enquiry about exercise syncope, undue breathlessness and past medical or family history of serious cardiac disease or sudden death in young family members (see appendix 3). Where there is a clinical indication based on history or abnormal finding on cardiac examination, an ECG is recommended; co-ordination tasks, handwriting, fine and gross motor skills and including screening questionnaire to be completed by parent and teacher; language development - (referral to speech and language therapist where there is concern). height, weight and BP (especially if considering medication); information about child s appetite and dietary intake; if deemed necessary, neurological examination to include brain scan or EEG where there is a clinical indication. Educational Psychology assessment where learning difficulties are suspected (if not already undertaken). 5. Differential diagnosis and other existing conditions The assessment process should take account of other conditions, which may better account for the behaviours causing concern. These might include: disinhibited attachment disorder; over-activity associated with autistic spectrum disorders - including Asperger s syndrome conduct disorder; anxious in-attentiveness secondary to stress and trauma; agitated depression; past closed head injury; attention deficit without over-activity; Gilles de la Tourette syndrome; chromosomal disorders e.g. Fragile X; lack of consistent parenting; specific learning difficulties; physical or sexual abuse or neglect. The assessment process should also consider other conditions, which frequently exist alongside ADHD such as: oppositional defiant disorders (35%); conduct disorders (26%); specific or generalised learning difficulties; depression (8%) and/or anxiety disorder (26%); speech and language difficulties; developmental co-ordination disorder (50%); Autistic Spectrum Disorders. On completion of the assessment, the assessing doctor will then make the appropriate diagnosis. Following diagnosis, full reports should be provided to the parents and GP and where parental permission is given, also to other relevant professionals involves such as the SENCo/head teacher, Educational Psychologist, behaviour specialist teacher, school nurse and where already involved, the Social Services Department. Written information regarding medical terminology, treatment options, 9

and professional definitions should be provided to parents and the child s teacher/school when a diagnosis of ADHD is made. If the assessing doctor is of the opinion that social work intervention may be required, then they will need to obtain parental consent for a referral to the appropriate Access and Information Team for an initial assessment to determine service provision/ core assessment (See appendix 7). 3. TREATMENT & MANAGEMENT Following assessment, a treatment/management plan should be developed in consultation with the parent or carer and other agencies involved. Treatment should reflect the diversity of presenting symptoms. ADHD is a chronic condition requiring access to long term treatment and support, sometimes over many years. However, the level and type of support needed could vary. The principal aims of treatment are to promote the child s development and to reduce secondary difficulties or disabilities. Treatment approaches In many milder cases, careful management of behaviour and advice both to parents and teachers working with the child to control impulsiveness and maintain concentration may be sufficient to manage the problems. Behavioural interventions should be seen as the initial treatment of choice in children or young people who have been diagnosed with mild or moderate ADHD. Where these are not deemed to be sufficient however, or if there is severe ADHD, medication should be offered. This is a matter to be decided by the clinical judgement of the doctor who is managing the child in consultation with those who have day to day care of the child. 1. Following diagnosis of ADHD, written information should be given to the parents, carers and school regarding the condition and its management. The information should cover diagnosis and assessment, support and self-help, psychological treatment and the use and possible side effects of drug treatment. 2. Family support should aim to improve relationships within the family, promote parental empowerment and develop strategies to manage behaviour, e.g. parenting groups and/ access to a parent support worker based at Trehafod. 3. Children, young people and their families seen and assessed within Trehafod Child & Family Clinic will normally be offered this programme of support depending on need. In addition, parent support groups are available within the area. 4. For children under five, other behavioural support advice for parents can be accessed via health visitors, Sure Start/ Flying Start (not available in all areas at present) and nursery staff. It is extremely unusual to prescribe stimulant medication to children below the age of six years. 5. Families should be advised of local parent support groups (see appendix 10). 6. Liaison with the SENCo s should address behaviour management strategies within the classroom to address different learning styles and needs. Further support from behaviour specialist teachers should be sought where necessary. 7. It should be acknowledged that ADHD does not always present as a behavioural problem and management approaches to address inattentiveness may need to be developed. In the UK, at present, medication would not often be used in such presentations as a first line of treatment. 10

8. Individual counselling or group work may be offered to address issues of low self-esteem as well as to promote social skills and peer relationships and offer skills in the area of self control, problem solving, listening skills and dealing with and expressing feelings. 9. Time should be spent with the child/young person to help them understand what ADHD is and if medication is to be used, how it works and what its side effects may be. Educational Factors: Pre-school children: The community paediatrician may make a pre-school assessment to determine if a pupil has Special Educational Needs. They will contact the LEA for cases in which they feel a Statutory Assessment is required, or in other instances where they feel the involvement of LEA support staff may be beneficial. The doctor managing the case will provide appropriate guidance to parents and determine who should take the key role of ensuring co-ordination of behaviour management plans at home and playgroup or other nursery provision. Health visitors, nursery nurses and/or pre-school playgroup staff may often be in the best position to fulfil this role or can refer to a parent training group such as those run by Flying Start. Alternatively Drug treatment is not recommended for pre-school children with hyperactivity. School Aged Children (including those attending school based nursery classes) 1. The school s SENCo or head teacher, or in comprehensive, the head of year/pastoral coordinator or equivalent is likely to hold the key co-ordinating role. 2. The Individual Education Plan should include clear targets and strategies to deal with the identified problem areas, which are agreed with parents and monitored regularly. 3. The Access to Learning Service (e.g. the Educational Psychology and Behaviour Support Team) can be called upon by the SENCo when necessary, in accordance with normal practice. 4. Individual Education Plans and review records should be regularly copied to the health professional managing the case whom, in consultation with the parents, will decide whether further medical intervention is required. 5. It is beneficial if a member of school staff (including TA s) attend the LEA ADHD course. 6. Schools should liaise with home and other agencies and invite all agencies to relevant reviews. 7. It is important that the school provides an appropriate learning environment with a positive approach to behaviour. 8. It is important that schools are aware of children on medication and know the exact dose and time to be taken. Any changes in prescription must be fed directly to school to avoid parents suggesting give him another one if he s naughty (see appendix 8 for example of Medicine Administration form for schools). 9. If the child changes school, information regarding diagnosis and treatment needs to be shared with the new school and disseminated to relevant staff 11

Medication These guidelines on the use of medication should be read in conjunction with the ; National Institute of Clinical Excellence Guidance on the use of Methylphenidate (Ritalin, Equasym) for Attention Deficit/Hyperactivity Disorder (ADHD) in Children (October 2000) and National Institute for Health and Clinical Excellence Methylphenidate, atomoxetine and dexamphetamine for attention deficit hyperactivity disorder (ADHD) in children and adolescents. Technology appraisal 98. (2006) www.nice.org.uk/ta098 and the National Institute for Health and Clinical Excellence (NICE, 2008) clinical guideline 72 Attention Deficit Hyperactivity Disorder: Diagnosis and management of ADHD in children, young people and adults. www.nice.org.uk/cg072 Medication does not address the condition in isolation from other treatment approaches, and, except in severe cases, should be considered only after other approaches have been tried. Medication aims to minimise core symptoms and to improve the availability and effectiveness of other interventions 1. Prior to the commencement of any medication, parents and young people should be given full details of the medication, including details of its benefits, limitations and potential side effects. This should be given in a form that the parents and young people can understand and there must be opportunity to reflect on this and to ask questions before starting treatment. Depending on a range of factors such as coexisting conditions, side effects and patient/parent preference, the child or young person may be offered methylphenidate, atomoxetine or dexamphetamine. 2. Prior to the commencement of any medication, full details of baseline height, weight, blood pressure and pulse should be entered in the child s health record and charted on growth/centile charts. Note should be made of enquiry about exercise syncope and undue breathlessness. An ECG is required in the presence of these symptoms or if there is a past medical or family history of serious cardiac disease or sudden death in young family members or abnormal cardiac examination with onward referral for a cardiology opinion before medication is prescribed. 3. Contact should be made by the prescribing doctor with the child and parents and school within the first 2 weeks of commencing medication. Outpatient follow-ups should take place at one month, 3 months, 6 months and 12 months. Where stable, the child should then receive an annual appointment with the specialist ADHD Clinic, and be reviewed by the general practitioner in between. Swansea LHB have issued share care guidelines for children on stimulant medication to assist this process. In children and young and people taking methylphenidate, atomoxetine, or dexamphetamine: height should be measured every 6 months; weight should be measured 3 months and 6 months after the drug treatment has started and every 6 months thereafter. The National Institute for Health and Clinical Excellence (NICE, 2008) clinical guideline 72 Attention Deficit Hyperactivity Disorder: Diagnosis and management of ADHD in children, young people and adults, also recommend that blood pressure and pulse should be taken before and after every dose change and routinely every 3 months (p.45). 4. As part of the monitoring process the child s school should be requested to complete a monitoring questionnaire prior to every follow up appointment. 5. Once stabilised on medication, the child s GP should be notified in order to continue prescribing in liaison with the specialist ADHD clinic. The GP will be responsible for monitoring the medication regime during the intervening period between appointments at the specialist ADHD clinic in line with the Swansea LHB shared care guidelines. 6. As part of monitoring behaviour, the child s parent/carer should complete a stimulant drug side effects rating scale and abbreviated Conners form. 12

7. The Head Teacher, SENCo, Head of Year/ Pastoral coordinator or equivalent of a child s particular school as well as LEA support staff who are involved should be notified at the start of medication. Any change of the dosage must be notified to the school by the prescribing doctor rather than by simply being relayed to them by the parents or the child. Any concerns about the school administering medication should be discussed with the prescribing doctor. If the prescribing doctor is not employed by the local NHS. trust, schools should discuss their concerns with their Community Paediatrician before agreeing to administer medication. 8. Administration of medication will be carried in line with the school s written policy and recorded (see appendix 8 for example). 4. Monitoring In addition to the routine monitoring of individual cases through out-patient clinics as described above, as well as through reviews of Individual Education Plans, there should be broader monitoring of the incidence of ADHD and the success or otherwise of behaviour plans and medication. There are major training implications, particularly for tier one staff, in the recognition of ADHD and for their role in early intervention. The LEA currently run regular training on ADHD for teachers and TA s. These activities need to be overseen by the City and County of Swansea Interagency ADHD Working Group which involves key health, education, social services and voluntary sector staff, where the working of these guidelines will be reviewed against the data collected and arrangements for meeting training needs will be agreed. 13

APPENDIX 1 DIAGNOSTIC CRITERIA FOR ATTENTION DEFICIT/HYPERACTIVITY DISORDER (DSM-IV) A Either (1) or (2) 1) six (or more) of the following symptoms of inattention have persisted for at least 6 months to a degree that is maladaptive and inconsistent with developmental level: Inattention Present a) often fails to give close attention to details of makes careless mistakes in schoolwork, work, or other activities b) often has difficulty sustaining attention in tasks or play activities c) often does not seem to listen when spoken to directly d) often does not follow through on instructions and fails to finish schoolwork, chores, or duties in the workplace (not due to oppositional behaviour or failure to understand instructions) e) often has difficulty organising tasks and activities f) often avoids, dislikes, or is reluctant to engage in tasks that require sustained mental effort (such as schoolwork or homework) g) often loses things necessary for tasks or activities (e.g. toys, school assignments, pencils, books, or tools) h) is often easily distracted by extraneous stimuli i) is often forgetful in daily activities and/or 2) six (or more) of the following symptoms of hyperactivity-impulsivity have persisted for at least 6 months to a degree that is maladaptive and inconsistent with developmental level: Hyperactivity a) often fidgets with hands or feet or squirms in seat b) often leaves seat in classroom or in other situations in which remaining seated is expected c) often runs about or climbs excessively in situations in which it is inappropriate (in adolescents or adults, may be limited to subjective feelings of restlessness) d) often has difficulty playing or engaging in leisure activities quietly e) is often on the go or often acts as if driven by a motor f) often talks excessively 14

Impulsivity Present g) often blurts out answers before questions have been completed h) often has difficulty awaiting turn i) often interrupts or intrudes on others (e.g. butts into conversations or games) + B Some hyperactive-impulsive or inattentive symptoms that caused impairment were present before age 7 years. + C Some impairment from the symptoms is present in two or more settings (e.g. at school [or work] and at home). + D There must be clear evidence of clinically significant impairment in social, academic, or occupational functioning. + E The symptoms do not occur exclusively during the course of a Pervasive Developmental Disorder, Schizoprenia, or other Psychotic Disorder and are not better accounted for by another mental disorder (e.g. Mood Disorder, Anxiety Disorder, Dissociative Disorder, or a Personality Disorder). DIAGNOSIS Code based on type: 314.1 Attention Deficit/Hyperactivity Disorder, Combined Type: if both Criteria A1 and A2 are met for the past 6 months 314.00 Attention Deficit/Hyperactivity Disorder, Predominantly Inattentive Type: if Criterion A1 is met but Criterion A2 is not met for the past 6 months 314.01 Attention Deficit/Hyperactivity Disorder, Predominantly Hyperactive-Impulsive Type: if Criterion A2 is not met for the past 6 months 15

CRITERIA FOR HYPERKINETIC DISORDER (ICD-10 RESEARCH) Onset of disorder before age 7 Pervasive across situations. Evidence will require information from more than one source; parental reports about classroom behaviour are unlikely to be sufficient Clinically significant impairment in social, academic or occupational functioning Items Have persisted for at least 6 months to a degree that is maladaptive and inconsistent with developmental level. APPENDIX 2 Clinician to tick if present Inattention (6 of the following) 1. often fails to give close attention to details, or makes careless errors in schoolwork, work or other activities 2. often fails to sustain attention in tasks or play activities 3. often appears not to listen to what is being said to him/her 4. often fails to follow through on instructions or to finish schoolwork, chores, or duties in the workplace (not because of oppositional behaviour or failure to understand instructions) 5. is often impaired in organising tasks and activities 6. often avoids or strongly dislikes tasks, such as homework, that require mental effort 7. often loses things necessary for certain tasks or activities, such as school assignments, pencils, books, toys or tools 8. is often easily distracted by external stimuli 9. is often forgetful in the course of daily activities Overactivity (3 of the following) 1. often fidgets with hands or feet or squirms on seat 2. leaves seat in classroom or in other situations in which remaining seated is expected 3. often runs about or climbs excessively in situations in which it is inappropriate (in adolescents or adults, only feelings of restlessness may be present) 4. is often unduly noisy in playing or has difficulty in engaging quietly in leisure activities 5. exhibits a persistent pattern of motor activity that is not substantially modified by social context or demands Impulsivity (1 of the following) 1. often blurts out answers before questions have been completed 2. often fails to wait in lines or await turns in games or group situations 3. often interrupts or intrudes on others (e.g. butts into others conversation or games) 4. often talks excessively without appropriate response to social constraints Item list in DSM-IV is essentially the same but split into two sub-lists (inattention and hyperactivityimpulsivity) with only minor word differences here and there. Inattention list is, for practical purposes, identical. List of hyperactivity-impulsivity items in DSM-IV combines the ICD-1OR overactivity and impulsivity lists but has a threshold of 6/9 rather than 3/5 and 1/4) 16

APPENDIX 3 SCHOOL REFERRALS TO COMMUNITY PAEDIATRICIAN FOR ADHD Prior to making a referral if you think the child has ADHD, ask the following questions: Does the child have an IEP for behaviour? - If so, how long for? - When was it last reviewed? Has a member of staff attended the LEA ADHD course? Are there any other agencies involved? Have you discussed with/ referred to The Access to Learning Service (i.e. Behaviour Specialist Teacher or Educational Psychologist) at School Action Plus? Is there any other relevant information regarding this child e.g. changes in home circumstances, any medical conditions? Only following this, refer to the community paediatrician. Referrals through GPs will not be given any priority. 17

Referral Pathway for Assessment and Treatment of ADHD APPENDIX 4 PARENT GP TEACHER DECISION POINT A: SENCO Draw up IEP and carry out School Action intervention Need for further intervention? No Yes DECISION POINT B: Discussion with Access to Learning SPECIALIST and / or EDUCATIONAL TEACHER PSYCHOLOGIST Agree on further intervention No Screening by COMMUNITY PAEDIATRICIAN If evidence of ADHD, health section of ADHD referral form completed by CP + returned to school DECISION POINT C: Yes IEP Review Further intervention in School may involve EP and /or SPECIALIST TEACHER Does school + CP evidence suggest ADHD? No Yes SENCo completes school section of ADHD referral form and sends to TREHAFOD (CAMHS) 18

APPENDIX 5 Flow chart for medical assessment, treatment and follow up of children with Attention Deficit Hyperactivity Disorder School following discussion / intervention with Specialist Behaviour Teacher/Educational Psychologist (EP) Consider non ADHD referral to CAMHS or referral directed to EP or other agency as appropriate Referral to Community Paediatrician for Medical Screening No ADHD unlikely Baseline Physical Assessment including..sight test..hearing test (screen by whisper)..dcd screen..cardiovascular examination/ ECG if indicated If concern about Learning Disability or other..chromosomes for Fragile X..neurological or neuro developmental examination..assessment for presence of congenital disorder If concern about specific neurological conditions..eeg..ct / MRI Scan + + Parental Conners questionnaire & permission to contact school & other involved professionals for reports & Conners questionnaire SENCo to refer to CAMHS after IEP review Yes ADHD likely General Assessment by Child & Adolescent Psychiatrist..clinical interview parent / carer &child..using DSM IV / ICD 10 criteria..mental State Examination..observation of child in room..referral for speech and language assessment if any specific indication If considering use of stimulant or other medication for ADHD..height..weight..BP/ pulse... Ensure cardiovascular examination has taken place + arrange ECG if indicated...tft (only if family history thyroid disease or other specific concern)..baseline abbreviated Conners questionnaire by parent &school..baseline side-effects questionnaire If considering Imipramine (or if Clonidine prescribed in combination with stimulants)..baseline ECG Go to top of next page 19

From bottom of previous page ADHD diagnosed ADHD unlikely Consider non ADHD referral to CAMHS or referral directed to EP or other agency as appropriate If mild / moderate consider If severe consider Treatments including..behaviour modification..parent training..educational handouts to parents and school. Treatments as adjacent plus..trial of stimulant medication as 1 st line if symptoms severe..instigate in mild / moderate cases where no improvement within 3 months on other treatments (as per protocol for trial of medication in the treatment of ADHD in general clinics) and including information on medication for parents Monitoring of Stimulants and other drugs used for ADHD..initial frequent monitoring to fine tune the dose in close liaison with school..at least 6 monthly reviews including..height..weight..bp/ pulse..parent & teachers abbreviated Conners, filled in prior to appointment..side effects questionnaire to parents..consideration of trial without medication every 12 months..shared care after first year with GP if child s condition is stable 20

STANDARD LETTER REQUESTING SCHOOL REPORT APPENDIX 6 STRICTLY CONFIDENTIAL & RESTRICTED INFORMATION Date Name Address Dear Re: The above named child was recently referred to our service. It would be helpful as part of our assessment if you would provide us with a report covering the following: a) current academic achievements specifically achievements in reading, writing and mathematics, b) classroom behaviour in lessons which demand sustained attention and task completion on the child s initiative, e.g. writing assignment, classroom mathematics or quiet reading, c) general behaviour in the classroom and response to rules and discipline, d) general organisational skills: e.g. correct books in lessons, homework completed, PE kit remembered etc., e) relationships with peers in play and co-operative classroom work, f) apparent level of self-esteem, g) level of activity, attention span and impulsiveness, h) any other past and current concerns about the child i) Stage child is currently on the SEN Code of Practice (WAG, 2002) and names of other professionals involved. NB: Please note we will usually only consider prioritising children who have reached at least School Action Plus or who present with symptoms of a serious psychiatric disorder such as depression, psychosis, and eating disorder or following deliberate self-harm. We also would also be grateful if you could complete the enclosed questionnaire(s). We have had the parent/guardian s consent to contact you. Thank you in advance for your co-operation. Yours sincerely Consultant Child and Adolescent Psychiatrist 21

Appendix 7 22

Appendix 8 RECORD OF PRESCRIBED MEDICINES GIVEN TO CHILD IN SCHOOL Child s name Date of Birth.. 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 Date Time Medicine Dose Signature 23

CONSENT I consent to the named staff giving the routine medication as previously described. I understand this is a service which the school is not obliged to undertake. I understand I am responsible for ensuring the appropriate medication is available to the school. I authorise the school health team to contact my G.P to discuss if necessary. I understand that the medication will only be administered if there is an authorised member of staff in the school at the time. If no authorised staff are in the school I will be advised in order for me to provide cover or remove the pupil from the school for the period when there are no authorised staff available. I confirm I am the parent/person with parental responsibility for this child and I am able to give authority for the administration of the medication. SIGNED.. DATED.. SIGNED DATED. HEADTEACHER/NAMED TEACHER PARENT.. DATED OTHER NAMED TEACHER. DATED REVIEW DATE BY REFERRAL CENTRE. 24

APPENDIX 9 References and Further Reading Books Barkley, R A (1995). Taking charge of AD(H)D: the complete authoritative guide for parents. New York, The Guilford Press. Barkley RA (1990). Attention Deficit Hyperactivity Disorder: A Handbook For Diagnosis and Treatment. Guilford Press. New York. British Psychological Society (1996). Attention deficit hyperactivity (AD(H)D): A psychological response to an evolving concept. Leicester, British Psychological Society. British Psychological Society (2000). Attention Deficit/Hyperactivity Disorder (AD/HD): Guidelines and Principles for Successful Multidisciplinary team-agency Working. British Psychological Society: London JG. Cooper, P and Ideas, K (1996). Attention Deficit/Hyperactivity Disorder A Practical Guide for Teachers. London, David Fulton.. Department for Education (1994). Code of Practice on Identification and Assessment of Special Educational Needs. London, HMSO. Gordon, M. How to operate an AD(H)D Clinic or Sub-speciality Practice. GSI Publications. New York 0-9627701-6-7 Pentecost, D (2000). Parenting the ADD Child: Can t do? Won t do?.london, Jessica Kingsley Publishers. Prior, P (1997). AD(H)D/Hyperkinetic Disorders - How should Educational Psychologists and other Practitioners Respond to the Emerging Phenomenon of School Children Diagnosed as having AD(H)D? Paul Cooper (Ed) Emotional and Behavioural Difficulties - Cambridge: AWCEBD Research Papers American Academy of Child and Adolescent Psychiatry (1997). Practice parameters for the assessment and treatment of children, adolescents and adults with attentiondeficit/hyperactivity disorder. Journal of the American Academy of Child and Adolescent Psychiatry, 36 (10, supplement), 85S-121S. American Academy of Child and Adolescent Psychiatry (2007). Practice parameter for the assessment and treatment of children and adolescents with attention-deficit/hyperactivity disorder. Journal of the American Academy of Child and Adolescent Psychiatry, 46, 894-921. Banaschewski, T., Coghill, D., Santosh, P. et al. (2006) Long-acting medications for the hyperkinetic disorders: A systematic review and European treatment guideline. European Child and Adolescent Psychiatry. AMERICAN PSYCHIATRIC ASSOCIATION (1994). DIAGNOSTIC AND STATISTICAL MANUAL OF MENTAL DISORDERS, 4 TH EDITION, (DSM-1V). AMERICAN PSYCHIATRIC ASSOCIATION, WASHINGTON, DC. American Academy of Pediatrics (2000). Clinical practice guideline: diagnosis and evaluation of the child with attention-deficit hyperactivity disorder. Pediatrics, 105, 1158-1170. Barkley, R.A. (1990). Attention Deficit Hyperactivity Disorder: A Handbook For Diagnosis and Treatment. New York : Guilford Press. 25

Banaschewski, T., Coghill, D., Santosh, P. et al. (2006) Long-acting medications for the hyperkinetic disorders: A systematic review and European treatment guideline. European Child and Adolescent Psychiatry. Baumgaertel A and Wolraich M (1998). Practice guideline for the diagnosis and management of attention deficit hyperactivity disorder. Ambulatory Child Health, 4, 45-58. Beiderman J, Newcorn J and Sprich S (1991). Co-morbidity of attention deficit hyperactivity disorder with conduct, depressive, anxiety and other disorders. American Journal of Psychiatry, 148, 564-577. Cantwell D (1996). Attention deficit disorder: A review of the past 10 years. Journal of the American Academy of Child and Adolescent Psychiatry, 35, 978-987. Coghill, D. (2006) Making the most of scant resources: The development of an effective ADHD service. In ACAMH Occasional Papers No.24, The ADHD Spectrum. pp39-49. Curran and Taylor (2000). Attention deficit-hyperactivity disorder: biological causes and treatments. Current Opinion in Psychiatry, 13, 397-402. DuPaul GJ and Eckert TL (1997). The effects of school-based interventions for attention deficit hyperactivity disorder: A meta-analysis. School Psychology Review, 26, 5-27. Greene, R.W., Biederman, J., Faraone, S.V. et al (1996) Toward a new psychometric definition of social disability in children with attention deficit hyperactivity disorder. Journal of the American Academy of Child and Adolescent Psychiatry, 35, 571-578. Greenhill LL, Halperin JM and Abikoff H (1999). Stimulant Medications. Journal of the American Academy of Child and Adolescent Psychiatry, 38, 503-512. Greenhill et al (2002) Practice parameter for the use of stimulant medications in the treatment of children, adolescents and adults, Journal of the American Academy of Child and Adolescent Psychiatry, 41(2, supplement), 26S-49S. Hill P and Taylor E (2001). An auditable protocol for treating attention deficit/hyperactivity disorder. Archives of Disease in Childhood, 84, 404-409. Jadad AR, Boyle M, Cunningham C et al. (1999). Treatment of Attention-Deficit/Hyperactivity Disorder. Evidence Report/Technology Assessment: Number 11(Prepared by McMaster University under contract No.290-97-0017). Agency for Health Care Policy and Research and Quality. Jensen PS, Arnold LE, Richters JE et al. (1999a). A 14-month randomized clinical trial of treatment strategies for children with attention-deficit/hyperactivity disorder. Archives of General Psychiatry, 56, 1073-1086. Jensen PS, Arnold LE, Richters JE et al. (1999b). Moderators and mediators of treatment response for children with attention-deficit/hyperactivity disorder: the multi-modal treatment study of children with attention-deficit/hyperactivity disorder. Archives of General Psychiatry, 56, 1088-1096. Jensen PS, Hinshaw SP, Kraemer HC et al. (2001). ADHD comorbidity findings from the MTA study: comparing comorbid subgroups. Journal of the American Academy of Child and Adolescent Psychiatry, 40, 147-158. Joughin C, Zwi M and Ramchandani P ( ) Treatment of children with attention deficit hyperactivity disorder (ADHD). In Clinical Evidence: A compendium of the best available evidence for effective health care. Issue 5. BMJ Publishing Group, London. Joughin C and Zwi M (1999). Focus on the use of stimulants in children with attention deficit hyperactivity disorder. Primary Evidence-base briefing No.1. The Royal College of Psychiatrists, London. Keen DV, Olurin-Lynch J and Venables K (1997). Getting it all together: developing a forum for a multi-agency approach to assessing and treating ADHD. Educational and Child Psychology, 14, 82-90. Lord J and Paisley S (2000). The clinical effectiveness and cost-effectiveness of methylphenidate for hyperactivity in childhood. National Institute for Clinical Excellence, Version 2, London. National Institute for Health and Clinical Excellence (2006) Methylphenidate, atomoxetine and dexamphetamine for attention deficit hyperactivity disorder (ADHD) in children and adolescents. Technology appraisal 98. National Institute for Health and Clinical Excellence. www.nice.org.uk/ta09 26

National Institute for Health and Clinical Excellence (2008) Attention Deficit Hyperactivity Disorder: diagnosis and management of ADHD in children, young people and adults. clinical guideline 72. National Institute for Health and Clinical Excellence. www.nice.org.uk National Institutes of Health (2000). National Institutes of Health consensus development conference statement: diagnosis and treatment of attention-deficit/hyperactivity disorder (ADHD). Journal of the American Academy of Child and Adolescent Psychiatry, 39, 182-193. Nutt, D.J., Fone, P., Asherson, D. et al (2007) Evidence-based guidelines for management of attention-deficit/hyperactivity disorder in adolescents in transition to adult services and in adults: recommendations from the British Association for Psychopharmacology. Journal of Psychopharmacology, 21. 10-41. Olson, B., Rosenbaum, P., Dosa, N. & Roizen, N. (2005) Improving guideline adherence for a diagnosis of ADHD in an ambulatory pediatric setting. Ambulatory Pediatrics, 5, 138-142. Overmeyer S and Taylor E (1999). Annotation: Principles of Treatment for Hyperkinetic Disorder: Practice approaches for the UK. Journal of Child Psychology and Psychiatry, 40, 1147-1157. Pelham WE, Wheeler T and Chronis A (1998). Empirically supported psychosocial treatments for attention deficit hyperactivity disorder. Journal of Clinical Child Psychology, 27, 190-205. Pfiffner, L.J., Barkley, R.A. & DuPaul, G.J. (2006). Treatment of ADHD in school settings. In R.A. Barkley (ed) Attention- Deficit Hyperactivity Disorder: A Handbook for Diagnosis and Treatment (3rd Ed). New York : Guildford Press (chapter 15- pages 547-589). Sonuga-Barke E, Daley D, Thompson M, Laver-Bradbury C and Weeks A (2001). Parent-based therapies for preschool attention-deficit/hyperactivity disorder: A randomized controlled trial with a community sample. Journal of the American Academy of Child and Adolescent Psychiatry, 40, 402-408. Taylor E, Sergeant J, Doepfner M et al. (1998). Clinical guidelines for hyperkinetic disorder. European Child and Adolescent Psychiatry, 7, 184-200. Taylor E, Dopfner M, Sergeant J, et al. (2004) European clinical guidelines for hyperkinetic disorderfirst upgrade. European Child and Adolescent Psychiatry, 13 (supplement 1), 7-30. Tettenborn, M., Prasad, S., Steer, C. et al (2008) The provision and nature of ADHD services for children/ adolescents in the UK: Results from a nationwide survey. Clinical Child Psychology and Psychiatry, 13, 287-304. Van der Oord, S., Prins, P., Oosterlaan, J. & Emmelkamp, P. (2007) Does brief, clinically based, intensive multimodal behaviour therapy enhance the effects of methylphenidate in children with ADHD?. European Child and Adolescent Psychiatry, 16, 48-57. World Health Organisation (1992). The ICD-10 classification of mental and behavioural disorders: Clinical descriptions and diagnostic guidelines. WHO: Geneva. 27

APPENDIX 10 USEFUL CONTACTS RE: ADHD ADDISS (ADD Information Services) Phone 020 8906 9068 Andrea Bilbow Fax 0208 8959 0727 PO Box 340 www.addiss.co.uk Edgware Email: info@addiss.co.uk Middx HA8 9HL ADD/ADHD Family Support Group Phone 01639 646966 17 Curtis Street Neath SNAP CYMRU (Swansea Office) Phone -01792 457305 Acorn Business Centre, fax- 01792 457306 250 Carmarthen Road, Swansea@snapcymru.org Swansea SA1 1HG 28