Committee Reports > List of Committees > Joint > 1999 > Committee on Health and Children > Report - Attention Deficit Disorder in Ireland

Oireachtas Committee on Health and Children

Attention Deficit Disorder in Ireland

Report compiled by the National Research Agency Ltd.

January 1999

Table of Contents

List of Tables

List of Figures

Acknowledgements

The National Research Agency Ltd., would like to thank all those adults with ADD/H, parents of children with ADD/H and professionals working in the area of ADD/H who contributed to this report for their generosity with information.

The National Research Agency Ltd., are also very grateful for discussions with Dr. Deirdre Killelea, Clinical and Educational Psychologist, and Prof. Michael Fitzgerald, Trinity College Dublin.

Preface

1. Aim of the Report

The aims of this report were as follows:

•The primary aim of the study was to establish the need for new services, medical, psychological and educational for children and adults with ADD/H.

•Secondly the study also aimed to determine the extent of psychiatric, psychological, educational, and vocational services throughout Ireland, both outpatient and residential for children and adults with ADD/H.

•Thirdly the study aimed to investigate the extent of expertise in the medical, psychological, educational and social services in Ireland.

The report commences with the overall study recommendations. The recommendations are presented at this stage due to the extensive nature of the report. This section is followed by a review of the literature pertaining to attention deficit disorder (ADD) or attention deficit hyperactivity disorder (ADHD) including (a) the definitions of the disorder, (b) the diagnosis, prevalence, and treatment of the disorder including behavioural treatments and (c) adult ADD/H. The following sections correspond to the study objectives.

•Objective one was concerned with the current service provision in Ireland for persons with the disorder and co-existing conditions.

•Objective two was concerned with the provision of services for person with ADD/H in the UK and the US.

•Objective three involved an investigation of those providing services to persons with ADD/H in Ireland (including teachers, teacher-training colleges, youth services).

•Objective four was concerned with medical personnel specialising in the field of Attention Deficit Disorders.

•Objective five investigated the needs of families of persons with ADD/H.

•Objective six was investigating the level of educational provision for persons with ADD/H.

•Objective seven was investigating the situation regarding medications for persons with ADD/H.

•Objective eight, nine and ten were concerned with the qualifications of those likely to encounter children and adults with ADD/H, including teachers, and GPs.

2. Recommendations

This section begins with a general outline of the main study findings followed by an account of specific recommendations.

2.1 General Recommendations

There is genetic and neurological evidence that ADD/H has a biological basis. ADD/H affects approximately 5-10% of the general population based on the criteria published in the Diagnostic and Statistical Manual of the American Psychiatric Association.

There is a severe under-recognition and under-diagnosis of ADD/H in Ireland by health and educational professionals. This is causing huge stress to children, families and adults with ADD/H. A support group for families of persons with ADD/H in Cork received over 1100 calls in two months. There is a serious lack of services for children and families with ADD/H and a total absence of services for adults with ADD/H. Untreated children and adolescents with ADD/H are at a serious risk of social and emotional problems, including conduct problems, school expulsion, learning failures, delinquency, substance abuse and even imprisonment. Untreated adults with ADD/H are at a serious increased risk of occupational failure, marital breakup, financial problems, gambling, drug and alcohol abuse and other psychiatric problems. There is an extreme lack of professional training in all disciplines with responsibility for the diagnosis, treatment and education of individuals with ADD/H.

It is now absolutely clear that many members of the Oireachtas are being lobbied by constituents about the neglect of persons with ADD/H, that is, lack of diagnosis and services for many people throughout Ireland. £30,000 needs to be made available for a national prevalence study of ADD/H

2.2 Recommendations regarding diagnostic services for persons with ADD/H

1.There is a need for extensive diagnostic ADD/H centres located in different regions. It is evident from the report that quite a large number of children wait for five to eleven years for a diagnosis of ADD/H after parental identification of problems. Moreover many families are spending thousands of pounds travelling to the UK for ADD/H services.

2.Diagnostic centres need to be available for adults as there is no adult ADD/H service in Ireland and research has revealed that one-third of children diagnosed with ADD/H meet the criteria for adult diagnosis. As revealed in the report one adult waited 15 years for a diagnosis.

3.Adult psychiatrists in each health board region need to take an interest in and develop expertise in the area of adult ADD/H and undertake an outpatient clinic. Only one adult with ADD/H in this study was in contact with a medical professional.

4.ADD/H services for children and adults need to be made available by the health boards. Parents of children with ADD/H and adults with ADD/H should not have to pay for diagnostic services privately.

5.Diagnostic centres for children and adults with ADD/H need to be available to young children since early diagnosis is essential to successful treatment.

6.ADD/H diagnostic services should be comprised of a multi-disciplinary team of professional including psychiatrists, neurologists, paediatricians, clinical and educational psychologists.

7.ADD/H diagnostic services need to be equipped with the necessary assessment materials, including psychological tests and computerised tests of attention.

2.3 Recommendations regarding treatment services for persons with ADD/H

1.There is a need for extensive treatment centres for children and adults with ADD/H located in different health board regions of the country. Such treatment centres would exist alongside the diagnostic centres.

2.Treatments for children and adults with ADD/H need to be multimodal in nature comprising behavioural and cognitive treatments and medical treatments.

3.The Irish Medicines Board need to approve a far greater number of medicines that are not available at present. This lack of approval is seriously undermining the provision of adequate internationally recognised treatments for many persons with ADD/H. Medications have been unequivocally shown to reduce the core symptoms of hyperactivity, impulsivity and inattentiveness. Classroom behaviour and academic performance has been shown to improve following medication. Medications also reduce oppositional and aggressive behaviour. In this study parents noticed that their child’s behaviour problems had diminished since the introduction of medication.

4.The drug Ritalin needs to be available on prescription to adults with ADD/H.

5.The diagnostic and treatment service for children with ADD/H at Our Lady’s Hospital for Sick Children, Crumlin need to be extended in order to cope with the large number of persons currently on waiting lists for neurological and psychological assessment.

2.4 Recommendations regarding educational services for persons with ADD/H

1.There needs to be specific educational services for persons with ADD/H. In the US children with ADD/H qualify for special educational and related services when ADD/H impairs educational performance. In this study, parents of children with ADD/H and adults with ADD/H reported that the current Irish school system did not meet their needs. Parents should not have to rely on the goodwill of individual teachers and school principals.

2.Children with ADD/H in mainstream schools need access to remedial and resource teachers specifically trained in the area of ADD/H.

3.Children with ADD/H in mainstream schools need structured tailor-made activities and concrete learning experiences preferably by a teacher trained in the area of ADD/H. The current school and exam system in Ireland does not suit individuals with ADD/H.

4.A school specialising in ADD/H needs to be provided for children with severe ADD/H who cannot cope in mainstream schools. Children in this study have been expelled from schools and parents were obliged to take legal proceedings to ensure their child received an education. This school should be based on the Center Academy in London, a specialised day school for children with ADD/H.

5.Youthreach centres need to provide services to adolescents and young adults with ADD/H in keeping with the recommendations outlined in A National Educational Psychological Service, Report of the Planning Group, 1998, which stated that Youthreach centres should be able to provide psychological services to its clients.

2.5 Recommendations regarding the education of professionals in the medical, psychological, educational, and vocational services in the area of ADD/H

1.There is a need for widespread education and Continued Professional Development (CPD) in the medical fields. It is clearly evident in this study that many professionals had no precise training in the area of ADD/H, knowledge was gained through experience and many years of working with persons with ADD/H.

2.Teacher training colleges and educational institutions offering Higher Diploma in Education courses need to train teachers how to recognise and cope with ADD/H in the classroom.

3.There is also a need for continued professional development in teaching services through in-service training, lectures and conferences.

4.Psychology courses also need to specifically provide courses in the assessment and diagnosis of ADD/H in children and adults.

5.Staff providing vocational services to persons with ADD/H need to be trained in the area of ADD/H including behaviour management techniques.

6.There is a need for research into ADD/H to be conducted in Ireland. This will also serve as a mechanism to heighten awareness about the disorder among medical and educational professionals.

3. Literature Review of Attention Deficit Hyperactivity Disorder

In this section the disorder is defined, issues surrounding the diagnosis and treatment of the disorder are examined, and the concept of Adult ADD/H is discussed.

3.1 Definition of ADHD

In 1980 the diagnosis of Attention Deficit Disorder was first recognised in the Diagnostic and Statistical Manual, 3^rd Edition (DSM III) – the official diagnostic manual of the American Psychiatric Association (APA). ADD is characterised by the attention skills that are developmentally inappropriate, impulsivity, and, in some cases, hyperactivity. ADD is defined as a neurobiological disability that affects up to 5% of American children. Characteristics of children with ADD can include the following and often arise in early childhood:

•Fidgeting with hands or feet

•Difficulty remaining seated

•Difficulty following through on instructions

•Shifting from one uncompleted task to another

•Difficulty playing quietly

•Interrupting conversations and intruding into other children’s games

•Appearing not to listen to what is being said

•Doing things that are dangerous without thinking about the consequences

The above behaviours must last at least six months with onset before age seven.

Attention deficit hyperactivity disorder (ADHD) or Hyperkinetic Disorder (HKD) has previously been called minimal brain damage, minimal brain dysfunction, and hyperactivity and the name has changed as our understanding of the disorder has broadened. Without the hyperactivity, the condition is called Attention Deficit Disorder (ADD). Like most psychiatric disorders, ADHD is defined by a set of behavioural characteristics of which no single one is diagnostic.

The specific diagnostic criteria for ADHD are in the American Psychiatric Association’s Diagnostic and Statistical Manual (DSM-IV, 1994) and those for HKD are in the International Classification of Diseases manual (ICD-10, 1992 and 1993) published by the World Health Organisation. DSM-IV describes three types of attentional disorder: (a) Attention-Deficit/Hyperactivity Disorder, Predominantly Inattentive Type, (b) Attention-Deficit/Hyperactivity Disorder Predominantly Hyperactive-Impulse Type, and (c) Attention-Deficit Disorder, Combined Type. Different professional interpretations of the symptoms have been taken, but according to Fosner & Raichle (1994) these differences may be primarily semantic. "After decades of operational definitions, DSM and ICD manuals in their most recent versions (APA, 1994; WHO, 1993) now recognise the same problem as the basis of the diagnosis, in almost identical sets of 18 symptoms. However, there are still major differences in decision rules (Swanson et al., 1998). The primary difference between the decision rules is that HKD is a subset of ADHD in ICD-10 and can be used to identify a refined phenotype. DSM-IV, on the other hand, aims to recognise as many diagnoses as there are symptom patterns. The DSM-IV classification is outlined below.

The Diagnostic and Statistical Manual, 4^th Edition (DSM-IV), published by the American Psychiatric Association describes characteristics frequently found in persons with ADD¹

A.Either (1) or (2):

Inattention: At least six of the following symptoms of inattention have persisted for at least six months to a degree that is maladaptive and inconsistent with developmental level:

(a)often fails to give close attention to details or 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

Hyperactivity-Impulsivity: At least six of the following symptoms of hyperactivity-impulsivity have persisted for at least six 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 where it is inappropriate (in adolescents or adults may be limited to subjective feelings of restlesssness)

(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

Impulsivity

(g)often blurts out answers before questions have been completed

(h)often has difficulty waiting turn

(i)often interrupts or intrudes on others (e.g., butts into conversations or games)

The above is not meant to be used as a simple checklist. A careful developmental history and observation are used to define a general pattern of behaviour suggestive of ADHD. All children may be inattentive or exhibit high levels of activity, however, for children with ADHD, the persistence, pattern, and frequency of this behaviour is much greater.

Attention Deficit/Hyperactivity Disorder (ADHD) is one of the most common psychiatric disorders in childhood. It is highly prevalent, interferes with development in a variety of areas and is relatively persistent across settings such as home, school and leisure time activities.

Its impact on society is enormous in terms of financial costs, the stress to families, the impact on academic and vocational activities, as well as the negative rebound effects on self esteem (Biederman et al, 1996). Approximately four per cent of adults are estimated to have ADD/H and as is the case with many children with ADD/H, adults with ADD report problems with making and maintaining friendships and uneven interpersonal relations. In young children with ADD/H, over 50 per cent are reported to have significant problems in peer relationships (Barkley, 1994).

The persistent inability to concentrate, multiple failures, disapproval and demoralisation may contribute to low self-esteem. Recent studies confirm that ADD is commonly associated not only with antisocial disorders, but also with anxiety and depressive disorders (Biederman et al., 1993). For example, adults may report social difficulties: peer, family, marital, and job-related problems. Social and interpersonal relationship problems can also contribute to deep-rooted feelings of loneliness, demoralisation and depression.

There is good evidence that ADHD, like other psychiatric disorders such as depression, has a biological basis. Biederman et al. (1990) reported that ADHD is strongly familial. Evidence can be seen from studies showing that hyperactivity is more common in the biological parents than it is in the adoptive parents of ADHD children. Twin studies by Gillis et al., (1992) and adoptive studies (Alberts-Corush et al.,1986) suggest that familiarity may be due partly to shared genes.

New research by scientists at Trinity College Dublin (Gill et al., 1997) has confirmed that sufferers from ADHD have a genetic abnormality causing the condition. The research by Trinity’s Department of Genetics and Psychiatry was conducted with 49 Irish ADHD patients and their parents. The scientists found a hereditary variation in the Dopamine transporter gene, causing an abnormality of neurotransmission in the brain. The research also revealed that methods of treatment using psycho-stimulant drugs, such as Ritalin, are likely to be "on the right track". Research might go some way to reduce parents’ guilt by knowing there is a genetic problem.

Results from a landmark study conducted by Alan Zametkin, MD, and his colleagues at the National Institute of Mental Health showed that the rate at which the brain uses glucose, its main energy source, is lower in subjects with ADD/H than in subjects without ADD/H (Zametkin et al., 1990). Even though the exact cause of ADD/H remains unknown, we do know that ADD/H is a neurological-based medical problem and is not caused by poor parenting or diet.

As mentioned earlier, ADD/H is the most common psychiatric disorder of childhood. It affects three to ten per cent of school age children and like most other psychiatric disorders, it is much more common in boys. The sex ratio is at least three to one and as adults, they are more likely to suffer from alcoholism and antisocial personality.

3.2 Diagnosis and Treatment of ADHD

Diagnosis is a multifaceted process and a comprehensive assessment is necessary to rule out other causes and also to determine the presence / absence of co-occurring conditions. The symptoms of ADHD begin early and the disorder usually becomes obvious by the age of two or three. However, at all ages it is important to seek evidence of other conditions. Due to a combination of empirical research findings and expert committee consensus, there have been successive changes in diagnostic criteria, which have resulted with the DSM-IV criteria, which emphasises several factors. A firm diagnosis is only reached after a comprehensive multi-modal investigation. Those involved in such an investigation include the parents, the child’s teachers and the family doctor. A psychologist usually refers a patient to a consultant paediatrician or consultant psychiatrist, who makes the final diagnosis and who may prescribe a medication.

According to Swanson et al., (1998) a large part of the difference in prevalence rates in different countries is due to the definitions used and not from geographical differences. The prevalence of ADHD/HKD using DSM diagnostic criteria is about 5-10% of the general population whereas this frequency drops to 1-2% with the ICD tradition, which restrict diagnosis to the full syndrome with limited comorbidity (Swanson et al., 1998). Prevalence rates have been affected by access to services, tolerance of symptoms, the marketing of medications and the actual presence of symptoms. A change in the educational regulations in the US in 1990 contributed to the doubling of the administrative prevalence of ADHD over a 3-year period (Swanson et al., 1996). A reintroduction of the drug methylphenidate in the UK after an absence of 10 years contributed to a rapid increase in the administrative prevalence of HKD in the UK.

As outlined earlier the symptoms specified in the criteria must be present for at least six months, ensuring that persistent rather than transient symptoms will be included. The symptoms must be "maladaptive and inconsistent with developmental level". This ensures that the symptoms are of sufficient severity to cause problems and that the child’s age and neurodevelopment are considered in evaluating symptoms.

According to Hinshaw et al., (1997) the diagnosis of ADHD and HKD are based on clinical history and although used by professionals neither psychological or biological tests are recommended for clinical use (DSM-IV and ICD-10).

The symptoms must be present across two or more settings, for example, school and home. Taken as a whole, these criteria require an illness pattern that is enduring and has led to impairment. To make this diagnosis appropriately, the clinician must be familiar with normal development and behaviour and gather information from several sources to evaluate the child’s symptoms in different settings. This helps to distinguish children with ADHD from unaffected children, whose parents or teachers are mis-labelling normal behaviours as pathological. When the DSM-IV criteria is followed correctly, it demonstrates high reliability and reduces the numbers of false-positive diagnoses.

Thus, the overall approach to diagnosis may involve;

(1)A comprehensive interview with the child’s adult caregivers.

(2)A mental status examination of the child.

(3)A medical evaluation for general health and neurological status.

(4)A cognitive assessment of ability and achievement.

(5)Use of ADHD-focussed parent and teacher rating scales.

(6)School reports and other adjunctive evaluations if necessary (speech, language assessment, etc) depending on clinical findings.

Treatment should include consideration of at least the following;

(1)Education about ADHD for the parents and the child.

(2)Medication for the child.

(3)Remedial or special education where necessary.

(4)Behavioural and Cogntive Therapy

The stimulant medications Dextroamphetamine (Dexedrine) and Methylphenidate (Ritalin) are the main specific treatments for ADHD. Methylphenidate, created in 1955, now accounts for more than 90 per cent of the stimulant use in ADHD in the United States. Many experiments comparing the two drugs with placebos have shown that they produce moderate to dramatic improvement in about 75 per cent of children with ADHD. Why only 75 per cent respond favourably is not understood, but the responses suggest that ADHD, like depression, is a complex disorder with multiple causes. In general, methylphenidate and dextroamphetamine are equally effective, but some children do better on one and some on the other.

There have been more than 170 studies involving more that 6,000 school-aged children using stimulant medication for ADHD. The response rate for any single stimulant drug in ADHD is approximately 70 per cent, and up to 90 per cent of children will respond to at least one stimulant without major adverse events if drug titration is done carefully.

Medications have been unequivocally shown (i.e. by double-blind, placebo-controlled studies) to reduce core symptoms of hyperactivity, impulsitivity and inattentiveness. They improve classroom behaviour and academic performance, diminish oppositional and aggressive behaviours, promote increased interaction with teachers, family and others and increase participation in leisure time activities. Finally, stimulants have demonstrated improvements in irritability and anxiety. A recent meta-analysis found that the effect of stimulants on behaviour and cognition maybe several-fold greater than the effects on academic achievement.

For patients with ADHD who are intolerant of or unresponsive to stimulants, a number of other drugs have proven useful in clinical practice, including tricyclic anti-depressants and bupropion hydrochloride, a newer anti-depressant that blocks the re-uptake of norepinephrine and dopamine.

Swanson et al. (1998) published a careful review of all review studies of stimulant use in children in 1993. He found overwhelming evidence for temporary improvement of core symptoms (hyperactivity, inattention and impulsitivity), as well as the associated features of defiance, aggression and negative social skills. Children should be re-evaluated periodically, while not taking medications to see if the medications are still appropriate and necessary.

The secondary benefits of the drugs are predictable. The child becomes capable of working and playing with others, does better in school, wins more praise and less criticism. There is a decrease in the long-term risk of academic underachievement and psychological maladjustment. Although children with ADHD alone tend to learn more readily while taking stimulants, they may also need remedial work. The drugs have no direct effect on academic skill disorders, but may make children with both ADHD and learning disabilities more amenable to special education.

3.3 Non-Stimulant Treatment

Non-medication approaches to the treatment of ADD/H include the following:

•parent education about the disorder

•parent management training (contingency management in individual or group settings; this technique decreases disruptive behaviour, increases parents’ self confidence and decreases family stress)

•classroom / environmental manipulations (special class, seating in class, etc)

•contingency management and daily report cards by teacher

•individual psychotherapy for depression, anxiety and low self-esteem

•impulse control and social skills control training.

Children with ADHD perform most effectively when tasks are tailored for them. These children tend to favour the concrete experience learning style and the active style. These are most useful in circumstances, where tasks are experiential in nature, where the learning emerges from doing. The tendency for schools, however, is to focus on tasks which are essentially reflective and abstract, demonstrated by the literary form in the curriculum and public examinations.

The school for the ADHD child should meet certain essential requirements: have smaller classes, structured activities, flexibility, remedial facilities, monitoring of drug therapy, and a wide choice of subjects examination aids for particular disabilities. These children need access to proper resources.

3.4 Adult ADHD

Until recently, most child psychiatrists believed that ADD/H diminished in adolescence and disappeared in adulthood. Follow-up studies have shown this to be untrue. ADHD persists into adulthood in ten per cent to 60 per cent of childhood onset cases (Hechtman, 1992). In spite of this, little attention has been paid to the adult affliction of this disorder. It’s high prevalence in childhood, combined with the follow-up results, suggests that approximately two to four per cent of adults may suffer from ADHD, yet relatively few adults have been treated for ADHD. According to Swanson et al., (1998) "about one-third of individuals with ADHD diagnosed in childhood still meet the criteria in adulthood, and a diagnosis of antisocial personality emerges in about 20% of those diagnosed as children" (p.429).

Like their younger counterparts, adults with ADHD have been described as being more aggressive, disruptive, domineering, intrusive, noisy, and socially demanding than those without ADHD (Barkley, 1994). These behavioural characteristics have been associated with peer rejection during the childhood and adolescent years and are likely to contribute to poor relations in the adult years as well.

Attention deficit hyperactivity disorder is a chronic and often serious psychiatric disorder that is identified in early childhood and can persist into adulthood (Gittelman et al., 1985; Wender, 1985). Many adult ADHD patients with co-morbid depression or anxiety disorders often abuse drugs (Wender, 1985). Fitzgerald (1998) reports that adults with ADHD "can have stormy life passages which often lead them to experience considerable demoralisation and low self-esteem" (p.82). The diagnosis of ADHD is receiving increasing attention in Europe but it is still less frequently diagnosed as compared to the United States. Co-morbidity often occurs in association with ADHD but patients are diagnosed as having a personality disorder or depression and the co-morbid ADHD is missed (Fitzgerald, 1998).

Diagnosis of ADHD in adults

The three core clinical symptoms of attention deficit disorder in adults are outlined below:

•The first core clinical symptoms relate to inattention and distractibility. These patients show poor concentration; are unable to complete reading or other cognitive tasks; shifting activities frequently; daydreaming frequently; are easily distracted by external stimuli or events; are distracted by internal thoughts; are forgetful; have problems organising time; pay poor attention to detail and have difficulty listening.

•The second core clinical symptom relates to impulsivity and the issues here are impatience; acting without thinking; talking out of turn; having impulsive urges and temper tantrums.

•The third core clinical symptom is hyperactivity and the issues here are having a restless feeling; having motor hyperactivity; having difficulty remaining seated during meetings and meals and having difficulty working quietly.

Murphy & Barkley (1996) point out that DSM-IV criteria may be inappropriately worded for adults and that the diagnostic thresholds could be too stringent when applied to adults resulting in underdiagnosis of the condition. Murphy & Barkley (1996) go on to say that ADHD should be diagnosed in adults ‘whenever problems with poor inhibition, sustained attention, and restlessness have persisted since childhood and resulted in impairment’. Toone & Van der Linden (1997) have suggested that approximately 0.5%-1% of the young adults population have symptoms associated with ADHD. Fitzgerald (1998) recommended that one adult psychiatrist in each region develop an interest and expertise in the area and undertake an outpatient clinic also. According to Moore and O’Donovan (1998), there is growing evidence that adult ADD/H is largely treatable. However Moore and O’Donovan (1998) state that many doctors in this country are unaware of the diagnosis of adult ADD/H, with the patients often querying their doctor about it having heard reports of ADD/H through the media. To the knowledge of Moore and O’Donovan (1998), there is no adult psychiatrist in Ireland currently treating this disorder, and the drug Methylphenidate is not licensed for use in adults in Ireland. Moore and O’Donovan (1998) report that some sources recommend that there be one adult psychiatrist in each area who would take a special interest in the condition thus developing expertise in the area. A dedicated out-patient clinic could then be set up with the specialist providing a wealth of expertise for others.

3.5 Summary of Literature Review

•There is genetic and neurological evidence that ADD/H has a biological basis.

•A multifaceted diagnosis and assessment of ADD/H has to be conducted to rule out co-occurring conditions.

•The prevalence rates are between 5-10% of the general population using DSM criteria, dropping to 1-2% with ICD diagnostic criteria.

•Drug treatment seems to work well in the majority of cases but monitoring is essential

•Non-stimulant and behavioural treatments are important for development

•Adult ADD/H is almost completely under-diagnosed in this country

•There is a need for adult psychiatrist to treat this disorder in adults, however Ritalin is not licensed for use in adults in Ireland.

4. Objective One

To review the state of current service provision in Ireland for persons with ADD/H and co-existing conditions

This objective is investigated under several headings. Firstly, government documentation pertaining to services for children with ADD/H is presented. This is followed by an outline of the public services currently available in Ireland. Finally there is a discussion of some of the private services available to families with ADD/H in Ireland.

4.1 Government Documentation

In 1993 a Special Education Review Committee cited the need for:

"An expanded School Psychological Service, staffed by psychologists with appropriate qualifications, under the aegis of the Department of Education and/or the proposed intermediate educational administrative structure, should be established on a countywide basis without delay. An essential part of its overall function should be to assist primary and post-primary schools in the identification and assessment of pupils with special needs, including those with disabilities. In setting up these services, priority should be given to areas which do not have adequate services at present".

Although this service did not specifically identify children with ADD/H, it stated the necessity to assess pupils with special needs. However, there is one psychologist to every 18,000 students – Impact Report (1996). The report also states:

"The prevention of difficulties is preferable to crisis intervention and far more cost effective."

A White Paper on Education – Charting our Education Future (1995) states that:

"A major objective will be that a percentage of the sixteen-to-eighteen-year-old age group completing senior cycle will increase to at least 90 per cent by the year 2000." Thus highlighting the plan to keep as many students as possible within the school system.

As can be seen from the above, very little provision has been made for students with special needs or disabilities within the school system.

In order to investigate government plans further, a series of Dáil Questions were put to the Minister for Health and Children concerning services for children with ADD/H. These questions and answers are outlined in the next section. The first question presented was by Jack Wall, TD.

Dáil question:

To ask the Minister for Health and Children if he will report on the extent of the incidence of attention deficit disorder or attention deficit hyperactivity disorder; the services available to sufferers and their families; if he will make core-funding available to the Irish National Council for attention deficit disorder or attention deficit hyperactivity disorder support groups; and if the will make a statement on the matter. Jack Wall, TD.

The oral answer from Mr. Brian Cowen TD, Minister for Health and Children, on October the 8^th 1998 was as follows:

Estimates of the prevalence of Attention Deficit Disorder or Attention Deficit Hyperactivity Disorder vary with the degree or intensity of difficulty. Exact figures on the incidence of the disorder are not currently available. However, there is an indication that the number of children and adolescents being diagnosed as suffering from the disorder may be on the increase. The diagnosis, assessment and treatment of attention deficit disorder normally falls within the area of responsibility of the child and adolescent psychiatric services in each health board. The development of a comprehensive child and adolescent psychiatric service is each health board area has been identified as a priority in my Department’s Health Strategy – Shaping a Healthier Future and a consultant-led service is now available in each health board.

My Department is currently in the process of formulating a policy document for the further development of child and adolescent psychiatric services which will include consideration of the specific needs of children and adolescents with Attention Deficit Disorder and Attention Deficit Hyperactivity Disorder. In the meantime, I have provided additional revenue resources in the current year to enable further improvement to be undertaken in the child and adolescent services in a number of health boards.

Health boards are developing a mental health service which is comprehensive and community-based and, in line with the Health Strategy, are continually considering ways in which services provided by voluntary and/or private groups might integrate with health board services. In the circumstances, I would suggest that the regional health boards be contacted directly by the relevant support groups to discuss their needs, including funding requirements, and what role the groups might have in the future development of services in the Boards’ functional areas.

A second Dáil question by Jack Wall, TD is presented below.

Dáil question

To ask the Minister for Health and Children if he will seek funding in the forthcoming Budget to provide Psychologists to assist groups dealing with attention deficit disorder and attention deficit hyperactivity disorder in view of their urgent need and the lack of facilities for groups. Jack Wall TD

The written reply from Mr. Brian Cowen TD, Minister for Health and Children, on October the 20^th 1998 was as follows:

Attention Deficit Disorder (ADD) and Attention Deficit Hyperactivity Disorder (ADHD) come within the remit of the child and adolescent psychiatric services. Each of the health boards now has a dedicated child and adolescent psychiatric service headed by a consultant child psychiatrist.

A review of child and adolescent psychiatric services is currently been undertaken by my Department. The special needs of children with conditions such as Attention Deficit Disorder (ADD) and Attention Deficit Hyperactivity Disorder (ADHD) is being examined as part of this review.

The further development of child and adolescent psychiatric services, including the recruitment of additional psychologists, will be considered in the light of the availability of funding in 1999.

A third question was posed by Senator Mary Jackman regarding the prevalence of ADD/H in Ireland, this is presented on the next page.

Dáil Question

To ask the Minister, Mr. Brian Cowen TD, Minister for Health and Children for an immediate prevalence study of ADHD in Ireland to be carried out so that the serious situation of ADHD sufferers can be addressed. Senator Mary Jackman

The reply from Mr. Brian Cowen TD, Minister for Health and Children, was as follows:

As the Senator may be aware estimates of the prevalence of Attention Deficit Disorder or Attention Deficit Hyperactivity Disorder vary with the degree of intensity of difficulty. ADHD is an internationally recognised condition of brain dysfunction. It is a complicated and variable condition with many presentations. The combination of inattentive, hyperactive and impulsive behaviour in children is recognised as a disorder when these behaviours are severe, developmentally inappropriate and impair functioning at home or at school.

The number presenting to the health boards who require medical care would indicate that the prevalence rate is in line with the international norms at approximately 1 to 3 per cent of the child population and is based on criteria for the Disorder contained in the ICD – International Classification of Diseases.

Definitive Diagnosis

As I have pointed out the gradient of dysfunctional intensity can vary greatly and it is important to seek evidence of other psychological conditions such as stress disorders, and adjustment reactions before a definitive diagnosis and treatment programme may be undertaken. A physical examination is useful in ruling out issues such as hearing problems or neurological conditions.

Nevertheless, the numbers presenting to the health service may not be representative of the level of children presenting with ADHD like symptoms and it is crucial therefore that the role of the educational sector is properly recognised with teachers being provided with the necessary skills in identifying a child under stress.

National Educational Psychological Service Agency

A Department of Education and Science Planning Group, on which the Department of Health and Children was represented, has just finalised a report on the development of a National Educational Psychological Service for all schools.

Micheál Martin, TD, Minister for Education and Science detailed a £57 million plan to tackle educational disadvantage on December the 3^rd 1998. The measures in the initiative include the hiring of 450 new teachers for remedial and other disadvantage issues. Of relevance to this study was the report that funding will be made available for a remedial teaching service to every school and a special home/school liaison service to every disadvantaged school. The Minister also announced a £1.5 million provision for the establishment of a National Educational Psychological Service for schools. The Minister said; "The estimates and budget process have led to very substantial extra funding for education. The two-year educational disadvantage programme will make a major contribution to helping us achieve our most important goal, which is to broaden and deepen participation at all levels of education. We don’t believe this programme will end educational disadvantage, but it well help us to tackle it head on in many critical areas".

The remedial service outlined will be available to all primary schools from September next. It was announced that all schools currently without a service will receive a service in line with the recommendation that each teacher should deal with roughly 30 pupils in need of the service. The Minister has placed a high priority on the establishment of a National Educational Psychology Service. This service will play a vital role in helping identify the special educational needs of children. The £1.5 million is for the establishment and initial staffing of the service over the next two years. The Minister also stated that increasing the number of children who complete the senior cycle is a key policy objective of the government. With regard to third-level education the Minister announced that £3 million will be allocated to promote access to third-level amongst students from disadvantaged backgrounds, including people with disabilities. In the next section a Draft Fine Gael policy on ADHD is presented for comparison purposes.

In a draft Fine Gael Policy on ADHD "Giving people a life" (September, 1998) it is stated that "the response to the diagnosis, treatment and educational needs of ADHD varies widely between the different health boards. If in fact there is any awareness of the condition at all. At present there is no national strategy to deal with this problem. Dan Neville, TD, the Fine Gael Spokesman on Children, also stated that: "ADHD untreated can cause immense suffering both for those who suffer from the condition, their families who are left to deal with an intensely frustrated and often severely delinquent child and society as a whole which must bear the cost of dealing with a delinquent child, who may well turn into a criminal in later life. The cost of incarcerating a person in prison is approximately £40,000 a year in the US, studies have also shown that up to 30% of persistent offenders are believed to suffer from untreated ADHD. Fine Gael believes that there are two key elements to a successful strategy.

1.The formation of an effective screening programme which can identify the disorder early enough to treat it appropriately and greatly increase the chances of a successful life for sufferers. Screening should be aimed at 6-7 year olds.

2.A campaign of widespread education and the publishing of ‘best practice’ for medical professionals, to urgently increase awareness of the condition.

In order to ensure that this strategy is put in place Fine Gael believes that an interdepartmental committee with representatives from the Department of Health, the Department of Education, the Department of Social Welfare, and the Department of Justice should be created to formulate an effective interdepartmental response to the problem of ADHD as a matter of urgency. As well as addressing the two key elements outlined above the following should also be addressed.

•Raising greater awareness of ADHD, it symptoms and effects among the teaching profession. This should include changes in the syllabus of Teacher Training Colleges and especially raising awareness among speech therapists as 30% of referrals to a speech and language therapist are ADHD related.

•Identifying the best available treatments for affected individuals and ensuring that these are available locally on an equitable basis.

•Proving advice, information and support to affected individuals and their families.

In the next section the ADD/H service provided in Our Lady’s Hospital for Sick Children is presented followed by a brief evaluation of the service. Although the service was only in existence for eight months at the time of the evaluation, parents were asked their opinions about the service as well as some background information on their child with ADD/H.

4.2 Our Lady’s Hospital for Sick Children, Crumlin

In April 1998, Our Lady’s Hospital for Sick Children opened the first designated ADHD service in the country. This service was financed by the fundraising activities of the two Dublin Parent Support Groups. The service staff comprise a psychiatrist, three peadiatricians, one child psychologist and two neurologists. All of the staff work at the service on a part-time basis. Patients attending the service are aged between three and 16 years. Referrals are made to a consultant. All patients are then referred to the psychologist. There was a waiting list of eight months for psychological services and a waiting list of two-three months for neurological services. The assessment and treatment process for children and adolescents with ADD/H are described in the next section.

Assessment Process

The assessment process is very comprehensive and thorough in order to rule-out alternative conditions, particularly agitated depression, anxiety conditions, psychotic illness, and substance abuse which may cause symptoms of inattention and hyperactivity. The assessment involves a thorough history of patients’ physical, emotional, intellectual, educational and social development. Extensive behavioural checklists are completed by parents and teachers or by patients themselves. Cognitive tests of IQ and ability are administered as are neuropsychological tests and computerised performance tests. A medical history is also taken including a medical examination. There may sometimes be an assessment of drug and/or alcohol abuse. In summary the assessment process includes the following:

1.Parent, teacher, and patient checklists and interviews

2.Psychological and educational/achievement evaluation

3.Clinical and medical examination

Assessments are made by medical consultants and a clinical & educational psychologist.

Treatment Process

The treatment process usually begins with education about the disorder for the patient and the family. Parents are taught behaviour management techniques. There is generally some form of behavioural therapy also for the person with ADD/H. This may include behaviour modification and cognitive therapy for adolescents and adults, drug and alcohol assessment. The treatment process may also medication.

The service at Our Lady’s Hospital also runs a film service for parents about ADD/H. There is also a counselling service for parents and children. It also provides an information service, providing information about support groups and conferences.

As mentioned earlier a brief evaluation of the service at Our Lady’s Hospital was undertaken. The methodology and findings are presented in the next section.

4.3 Evaluation of the ADD/H Service provided at Our Lady’s Hospital, Crumlin

In order to ascertain parental opinion about the service at Our Lady’s Hospital a small evaluation of the service was undertaken. The methodology, procedure and the findings are presented below.

Method

A questionnaire was designed to gather information about the ADD/H service provided in Our Lady’s Hospital, Crumlin. The following areas were investigated:

•Demographics

•Diagnosis

•Services received

•Future needs

•Family burden

Procedure

The questionnaires were administered to parents of children with ADD/H at a film service provided by Our Lady’s Hospital, Crumlin on the 30th of November and the 7th of December, 1998. The questionnaires were disseminated with consent forms (see Appendix A&B). These parents completed the questionnaire during the interval, returned it by post or interviews were conducted by telephone. Many of those who attended the film service had not yet received services other than their medical evaluation due to the eight-month waiting period to see the psychologist. Of the 92 patients referred to the ADHD service between May and December 1998 approximately 40 patients had received at least one session from the psychologist.

Results

In total, 22 questionnaires were completed and returned by parents on behalf of their children of which 19 were male (N=19, 86%) and three (N=3, 14%) were female. The average age of the participants was ten years two months (SD=3.9).

Demographics

Parents were then asked to indicate when they first noticed a problem in their child. As parents could not be exact in the age of their child at that time or because it was only noticed gradually, this category was divided into ‘Early years’ (0-3 years) and ‘Childhood’ (4-17 years). A total of 15 children were noticed to have symptoms in their ‘early years’ while six were noticed later on in ‘childhood’. One parent did not respond to this question.

A total of 14 of the children were in primary school with six children in secondary school. The remaining two children were not receiving any education as one is 17 years of age while the other child is too young for primary school.

Diagnosis

The mean age of diagnosis for the children was just over nine years of age (SD=3.74). The most frequent age of diagnosis was eight years of age with four children (18%) being diagnosed at this age.

Services received

Parents were asked if their child had any additional needs beyond that which the services provided, 18 parents answered this question. Fifteen parents said yes, while only three parents said no. The parents were then asked to comment on this issue. Parents gave a total of 16 responses. A total of eleven responses called for more educational support, especially on a one-to-one basis. There were also two parents who believed that there was a need for better parent links with schools.

Of the 22 parents who responded, 17 had tried to implement behavioural strategies, learned at Our Lady’s Hospital ADHD centre, in their home, while five did not try any such strategies as they had not received psychological services. The parents were then asked which techniques they found most helpful. The most favoured behavioural strategy chosen by parents to use in the home, was the ‘star reward system’ which is a system of giving a child a reward when the child performs a ‘good behaviour’. A total of six parents used this strategy. Another favoured strategy chosen by four parents was to introduce routine into the household, while another four parents found a calm environment a helpful technique. Three parents used the technique, 1-2-3 Magic, while three more parents suggested that structure was a beneficial strategy. There were three other techniques suggested by parents that they found helpful. They were ‘post-event review’, ignoring and time-out. It should be noted that three of the parents stated that no behavioural technique was effective until medication (Ritalin) had been taken by the child.

A number of parents (N=11) believed that as a result of ADD/H their children were ‘underachieving’ compared to their actual ability. There were also three notable cases of suspension, expulsion and a case where legal proceedings were necessary to enable the child to receive education. There were two cases where the child had fallen so far behind in school that he/she had to repeat a year. Two parents suggested that the effect of ADD/H on the child’s education lead to low self-esteem. In another case, it was reported that interaction with their child’s peers was a problem while two cases called for the need of a private tutor, or at least a teacher educated about ADD/H.

Parents were asked to rate their satisfaction with twelve services that they may have received on a scale of: (a) satisfactory, (b) neither satisfactory nor dissatisfactory, (c) dissatisfactory. The percentages below reflect only those parents who provided a response.

•In an assessment by a consultant 15 of the 17 parents who responded were satisfied with the service received while two parents did not express an opinion.

•The majority of parents who responded (N=11) were satisfied with the medications they were prescribed, while two were unsatisfied with the medications given to their children. The remaining parents did not answer this question.

•Of a total of 13 respondents who answered the question, twelve were satisfied with the psychological services received at the ADD/H clinic. The remaining parent did not comment.

•A total of 10 parents were satisfied with information received from parent support groups/conferences. Half the sample (N=11) did not answer this question as they had not received this service.

•With regard to education about ADD/H, 13 parents had received the service while five had not as they were on a waiting list for psychological services. Eleven parents stated that they were happy with the service while one parent claimed they were unsatisfied to be on a waitlist for psychological services.

•Half of the respondents received strategies to address problem behaviours. A total of nine had not received this service as they were on a waiting list.

•Eighteen parents attended the film service. Fourteen parents were satisfied with the service. The remainder would like films about Irish children with ADD/H as the majority of videos available are from the US

•Two parent’s children received the CPT computerised test and were satisfied with the service. The test had just been purchased for the service.

A total of 14 of the parents had a child who was taking medication. Two children were taking Clonidine, eleven children were currently on Ritalin, while one child was taking Dexedrine. When asked if any changes have been seen in their child’s behaviour as a result of the medication, 13 parents said yes. Only one said that they have not noticed any changes in their child’s behaviour.

The parents were then invited to comment on the effect the medication had on their child. The most common answer was that parents noticed that the behaviour problems had diminished since the introduction of medication. Three parents also thought that their child was showing greater awareness of what was going on around them. Three parents believed they had seen a dramatic positive change in the social and educational aspects of their life and at home. The only other comments that the parents made were that their child’s conversation was normal. Finally, one parent claimed that their child was much more focused after taking medication. A total of two parents however commented that their children had suffered nausea, poor appetite and aching.

The parents were then asked to comment on what improvements they had seen regarding their child’s overall welfare. Four parents said that there had been a positive impact on behaviour. Three parents felt that their relationship with their child had improved, while the same number were happy to report that their child now had friends. Parents felt that there was a positive impact on their child’s education. One parent reported that their child was like a different person.

When the parents were asked about any disadvantages to the medication, eight said that they had found disadvantages. Five parents reported that the medication reduced their child’s appetite and three parents said that their child was sleepy especially in the evenings. The same number of parents stated that the initial medication was unsatisfactory as there were side effects. However these side effects were reversed.

In the next section of the questionnaire, parents were asked some questions about themselves. Firstly, they were asked if they thought that either parents were ADD/H. Half of the sample (N=11) said they thought they had the disorder, while nine did not believe themselves to be ADD/H. The remainder did not answer this question.

Future needs

Parents were asked what services they would like to see available. Eight parents said that they would like to see services in each Health Board. A total of six parents wanted more professionals to be made available while five parents wanted services provided for all age groups.

Family burden

Two questions were asked about what home life was like before and after ADD/H was recognised, the findings are presented below.

Before ADD/H was recognised most parents (N=15) complained about their child’s hyperactivity and behavioural problems. A total of five parents said that their home life was disrupted and fighting went on between family members. As a result of undiagnosed ADD/H, four parents stated that they were tense and depressed. Other comments made by parents were that their children had trouble keeping up academically. Others said that home was noisy and disorganised. Just over five reported that their child had no friends before the diagnosis, while two complained of their child taking on dangerous challenges.

When the parents were asked what home life was like after the ADD/H had been recognised, nine parents said it was much calmer, while another nine parents said that there was a notable improvement in the home after the ADD/H diagnosis. A total of two parents reported being happy to learn why their child had been behaving the way in which they had, whereas two parents said there was now more organisation in the home and one parent said there was less disruption. However, two parents stated that life was still stressful at home.

Parents were then asked to complete a section about family life before attending the services at Our Lady’s Hospital. They had to rate their answers on a scale from ‘severe burden’, ‘moderate burden’ to ‘no burden’. The first question asked of parents was whether there had been any loss of income to the family due to the child’s disorder. Thirteen parents reported that the disorder was a moderate burden. A total of three stated that it had been a severe burden on their income while five said that the disorder had not been a burden on their income.

The second question asked if their child’s behaviour disrupted activities such as not letting others sleep. A total of ten parents reported that this was a severe burden on family life. Another ten parents said that it was a moderate burden, while two did not comment.

The parents were then asked whether their child’s ADD/H interfered with normal recreational activities. Only one parent reported that their child was no burden, however, ten parents stated that their child’s ADD/H had a severe burden on recreational activities. The same number of parents (N=10) said that the child’s ADD/H was a moderate burden in this regard.

When asked whether neighbours or relatives had reduced/stopped visits because of the child’s behaviour, two parents said yes this had been a severe burden, while ten reported that it was a moderate burden. A total of six parents stated that their child’s behaviour had not created a burden on visits.

The final question parents were asked regarding family life before attending Our Lady’s Hospital was whether there had been any adverse effect on the health (for example, depression) of anyone in the family. Over half of the respondents (N=12) reported that they thought there had been a moderate burden placed on the health of the family. Seven parents believed there to have been a severe burden on the family’s health, whereas only two did not consider any adverse effect to have burdened their family’s health.

The parents were asked to rate the same items presented above, however, on the second occasion parents were asked to answer these questions regarding family life AFTER attending the service at Our Lady’s Hospital.

A total of eight parents did not believe their child’s disorder to be a burden on their income, since receiving the service at Our Lady’s Hospital, however, two still stated it to be a severe burden. A total of six thought it to be a moderate burden, compared to 13 parents before they had received the service. It is clear from the figure below that the percentage experiencing no burden increased.

Figure 1: Experience of financial burden due to the child’s disorder before and after attending the ADHD Service

When asked if after attending the service did their child’s behaviour disrupt activities, only one parent said their child’s behaviour was a severe burden, compared to ten who said it was a severe burden before they had received the service. However, seven still found their child’s behaviour a moderate burden, while six stated their child’s behaviour was now no burden, whereas, before the service, no one had rated this scale. As evident from the graph below the number of parents reporting ‘no burden’ had greatly increased.

Figure 2: Experience of child’s behaviour disrupting activities before and after attending the ADHD service

The parents were then asked if their child’s ADHD interfered as much now with normal recreational activities. A total of eleven found that it was still a moderate burden, whereas, before the service ten found it a moderate burden. However, only one parent now found it a severe burden, nine less parents than before the service at Our Lady’s Hospital was provided. The drop in the number of parents reporting ‘severe burden’ is clearly evident from Figure 3.

Figure 3: Burden on recreational activities due to the child’s disorder before and after attending the ADHD service

Whether relatives and neighbours stopped or reduced visiting to the family because of the child’s behaviour, was examined by the next question the respondents answered. Previously, two parents had found this a severe burden, but since the service had been received no parents commented upon it as such. All of eight parents said it was no burden, while the same total, found it a moderate burden. These findings are presented in Figure 4.

Figure 4: Neighbours stopped visiting due to child’s behavior before and after attending the ADHD service.

When asked had the child’s disorder had any other effect on relationships within the family or between the family and neighbours or relations, only one parent said it was a severe burden since the service, whereas nine had previously considered it to be such. As many as six did not report any burden on relationships within the family or with neighbours. However, eight parents still found it a moderate burden. The increase in the number of parents reporting no burden had a service had been received is evident in the figure below.

Figure 5: Family relations due to the child’s disorder before and after attending the ADHD service

Again the final question was in regard to whether there was any adverse effect on the health of anyone in the family. A sum of five respondents, said that there was no health burden for anyone in the family. Only one parent felt there was still a severe burden on family health, since receiving the service. A total of ten parents still claimed to be under a moderate burden, two less than before the service had been received. These findings are presented in the figure below.

Figure 6: Health burden due to the child’s disorder before and after attending the ADHD service.

Finally, the 22 parents were invited to make any other comments about the services received. Three parents stated that the service had only been in existence a short time and more time was needed to properly evaluate the full benefits. Another comment was that two parents believed Ritalin was like a “personality transplant”, while the same number believed the condition was best handled when the diagnosis was made. A final comment stated that having a child with ADHD was very depressing and testing on parents (N=2).

To conclude, the majority of patients attending the service were male, with an average age of ten years and many children were diagnosed years after a problem was first noticed. The majority of parents had implemented behavioural strategies, learned at the ADD/H service, at home. Parents were satisfied with the services received, the only problem being the lack of services available and the fact that parents were on a waiting list for appointments with professionals at the clinic. Medication generally worked well according to the parents. Interestingly, approximately half of the parents interviewed believed themselves to the ADD/H and wanted information on adult ADD/H. The majority of parents said there had been an improvement in family health after attending the ADD/H service at Our Lady’s Hospital. It is noteworthy that the service had only been in existence for a short time.

The ADD/H services provided at Temple Street Children’s Hospital are outlined in the next section.

4.4 Temple Street Hospital

An Assessment and Treatment Service for ADHD is available at St. Francis Clinic, Temple Street Children’s Hospital and it has been in operation since March 1997. This is one of the first hospitals to develop specialised services for ADHD families. Professionals at the hospital saw children with ADD or ADHD on an individual basis and saw the need for a specialist multi-disciplinary clinic. The age range of the clients is from four to 14 years. Referrals to the service are usually from consultants in the hospital or from other hospital consultants. GPs generally do not refer clients to the service. Currently, there are approximately 36 children, primarily boys, attending the service. A four-member team, comprised of a Consultant Child Psychiatrist, a senior registrar, a senior social worker and a clinical psychologist, run a clinic once a week. The waitlist for the service is short.

Assessment &Treatment Procedure

Initially a child is assessed by either (a) a doctor and a social worker or (b) a doctor and a psychologist. Parents are advised and trained on behaviour management techniques and support groups are also in place. The team approaches schools if there are specific learning difficulties diagnosed. The DSM-IV criteria are used in diagnosis and over 90% of all referrals to the clinic are ADD or ADHD. However, children are often referred to other professionals for additional services, namely speech and language therapy and occupational therapy. A professional from the service who was interviewed highlighted the need for educational psychologists and neuropsychologists to be involved in the work of the clinic. Finally, medication is prescribed if it is considered appropriate.

ADD/H services necessary

There is a need for more research to be conducted in the area. Also, there is a great need for the education and training of GPs and teachers about the disorder. There is not a great deal of awareness among professionals and there is a need for graduate training. Neurologists however are aware of the services.

A new service has recently been set-up in the mid-west of the country, the Neurodevelopment Clinic in Limerick. This is briefly reviewed in the next section.

4.5 Neurodevelopment Clinic

The clinic provides an assessment and treatment service for children and adolescents with neurodevelopmental problems, including those with ADD/H. It has only been in operation since the end of 1998. The service is run by a child psychiatrist and a community psychologist. Referrals to the clinic come from the child psychiatry department of the health board. Currently, there are more boys presenting to the clinic than girls.

A clinical interview and examination is central to the assessment process. Some of the treatments provided include the following:

•behaviour therapy

•speech and language therapy

•social-skills training

•medication

•parent training

•family therapy

The next section investigates the services provided to families of children with ADD/H by a clinical psychologist and an educational psychologist both of whom run a private practice.

4.6 Private Services

Many parents of children with ADD/H often present to clinical or educational psychologists for assessment, interviews with two professionals are presented below.

Clinical Psychologist in Private Practice

The service provided by the clinical psychologist in private practice is mainly one of assessment. A detailed psychological assessment is conducted followed by a detailed report, treatment recommendations and a follow-up service. The recommendations include behaviour management programmes for children and parents. The ages of children referred for assessment is between three and 16 years. The majority of children referred to the service are boys. The majority of referrals are from parents or GPs.

Mainly children with ADD/H are assessed, however, adults have also been assessed Recommendations made to adults with ADD/H are generally concerned with self-help and coping in the workplace. This contact with the clinical psychologist is the often the first referral for many of the adolescents and adults who were not diagnosed with the disorder as children.

The clinical psychologist has assessed over one hundred persons with ADD/H. Approximately half of these cases were described by the clinician as ADHD specific (that is specific types of ADHD, for example inattention only, impulsive-hyperactive only, ADHD with Aspergers syndrome) and the other half as ADHD general.

ADD/H service necessary

A multidisciplinary service needs to be available to individuals with ADD/H akin to the service provided at the ADHD clinic in Our Lady’s Hospital, Crumlin, created specifically for persons with ADD/H. These services need to be available in different regions of the country. There needs to be extensive research in Ireland into the disorder ADD/H. Families of persons with ADD/H need the provision of a special school to cater for children with ADD/H. Moreover, there needs to be specific services for adults with ADD/H.

Attention was drawn to the need to adhere to strict criteria when diagnosing ADD/H, psychologists and psychiatrists need to work together closely in diagnosing and treating the disorder.

Awareness among professionals regarding ADD/H

The clinical psychologist had knowledge about ADD/H through courses in Child Psychopathology, however the psychologist attended no specific course dealing with ADD/H. Experience and knowledge about the disorder had been gained through many years working with children with specific learning disorders and working in schools. Among professionals in Ireland there is a serious lack of knowledge about the disorder and the clinical psychologist interviewed tries to build awareness about the disorder as much as possible.

In summary, the role of the clinical psychologist is primarily diagnostic in nature with recommendations for treatment programmes and a follow-up service. There is a need for psychologists and psychiatrists to work together closely when diagnosing and treating the disorder. Moreover, multidisciplinary and specialist ADD/H services need to be available countrywide. There also needs to be extensive research into the disorder in Ireland.

An interview conducted with an educational psychologist in private practice is presented in the next section.

Educational Psychologist in Private Practice

The nature of the service provided by the educational psychologist in private practice is one of assessment. School going children are usually referred for one of following reasons: (a) failing in school, (b) very poor behaviour, (c) truancy or a combination of the above. The schools generally inform parents about the services of the educational psychologist. The children are between ten and 15 years and generally the educational psychologist sees fives times as many boys in the practice. Approximately 4-5% of all referrals received in the practice are children with ADD/H.

The educational psychologist is unable to offer treatment to these children and their parents and these cases are further referred to the ADHD service at Our Lady’s Hospital, Crumlin or a consultant in the hospital. Assessments are detailed and the educational psychologist acquires a profile of the child from the parents and from school personnel. Rating scales are used as well as a battery of tests. Written reports about the child are discussed with parents and recommendations are made.

ADD/H services necessary

Services for children with ADD/H should be provided in a mainstream school with a special ADD/H unit. In every school with more than 500 pupils there should be a classroom assistant and an ADD/H class. Special schools may lead to isolation and an inability to socialise so a mainstream setting would be the preferred setting for children with ADD/H according to the educational psychologist interviewed.

Awareness among professionals regarding ADD/H

The educational psychologist interviewed did not receive specific training on ADD/H, information about the disorder was learned through attending conferences and from membership of related organisations. The educational psychologist is actively involved in heightening awareness of ADD/H through organising lectures on learning disorders and organising in-service training on ADD/H for teachers and parents. In general there is a growing awareness about the disorder.

4.7 Summary of Objective One

Government Publications

•Government papers have not dealt with specific services for children with ADD/H

•There is a policy document being formulated which, according to the Minister for Health & Children, will include consideration of the specific needs of children and adolescents with attention-deficit disorder or attention-deficit/hyperactivity disorder

•Health boards are considering ways in which services provided by voluntary and/or private groups might integrate with the health board service

•The development of child and adolescent services will include the recruitment of additional psychologists.

•The Minister for Health and Children stated that ADD or ADHD is an internationally recognised condition of brain dysfunction. The number presenting to the health boards for medical care would indicate that the prevalence rate is in line with internationally recognised norms at approximately 1-3% of the child population based on ICD criteria.

•The role of the educational sector needs to be properly recognised and teachers need to be provided with the necessary skills to identify a child under stress

•A National Educational Psychological Service will be introduced in all schools to identify the special needs of children

•A remedial service will be available to all primary schools from September next as announced by the Minister for Education and Science

•Government papers did not refer to Adult ADD/H

Evaluation of the ADD/H Service provided at Our Lady’s Hospital, Crumlin

•The majority of patients attending the service were male, with an average age of ten years

•Many children were diagnosed many years after a problem was first noticed

•The majority of parents have implemented behavioural strategies, learned at the ADD/H service, at home

•There needs to be more links created with schools according to parents

•Parents were satisfied with the services received, the only problem being the lack of services available

•There is a need for services to be provided by each health board

•Medication generally worked well

•Approximately half of the parents interviewed believed themselves to the ADD/H and wanted information on adult ADD/H

•The majority of parents said there had been an improvement in family health after attending the ADD/H service at Our Lady’s Hospital

•It is noteworthy that the service had only been in existence for a short time

ADHD service at Temple Street Hospital

•A four member multidisciplinary team run an ADHD clinic once a week

•Children referred to the service are between four and 14 years of age, 90% of all referrals of ADD or ADHD using DSM criteria. Referrals don’t usually come from GPs

•Thirty-six children are currently attending the service, the majority are boys

•Children are often referred elsewhere for specialist services, such as speech & language therapy

•Parents are advised on behaviour management and support groups

•There is a need for a more extensive team including a neuropsychologist and an educational psychologist

•There is a need for adult ADD/H services

•A Neurodevelopmental Clinic has recently been set-up in the mid-west providing an assessment and treatment centre for children with neurodevelopmental problems including ADD/H

Private Practice

•Psychologists in private practice generally provide an assessment service including treatment recommendations or referrals to other professionals

•Assessments include detailed psychological assessments and individuals are profiled from information provided by parents & teachers, very precise diagnostic criteria are adhered to

•Mainly children with ADD/H are seen in the private practices discussed above, the majority of these are boys

•Referrals come from parents, GPs and schools

•The psychologists in private practice had no specific training in ADD/H, knowledge about the disorder was acquired through experience and many years of working in the area

•The psychologists in private practice are involved in heightening awareness about the disorder through organising lectures on learning disorders and organising in-service training for teachers and parents

5. Objective Two

To review ADD/H services and service models available in other countries namely the UK and the US and to interview key personnel involved in the provision of these services

The ADD/H services available in other countries, namely the US and the UK are reviewed in this section. The US services are described first, this section begins with a review of educational policies in the US.

Six professionals in the US provided information on the services available to children and adults with ADD/H including: Dr. Thomas Giroux, Keller Centre, Fairfax County, Virginia

Prof. Michael Gordon, Director of ADHD Clinic, Syracuse University, New York

Dr. Kevin Murphy, Chief Adult ADHD Clinic, University of Massachusetts Medical Centre

Prof. Arthur Robin, Professor of Psychiatry & Paediatrics, Wayne State University

Prof. Mark Stein, George Washington University Medical School

Prof. Jim Swanson, Child Development Centre, University of Irving, California

5.1 US Situation

Children with ADD are entitled to a free and appropriate public education by two public laws – the Individuals with Disabilities Education Act (IDEA) and Section 504 of the Rehabilitation Act of 1973. However children lacked access to such services because schools did not know much about ADD or treated ADD as some other disability. In 1990 Congress ordered a US Department of Education "Notice of Inquiry" to investigate how schools throughout the country were serving children with ADD. In 1991 the Department of Education issued a "Policy Clarification Memorandum", which binds all public and private schools receiving federal funds, indicating that children with ADD may qualify for special education and related services on the basis of their ADD when it significantly impairs educational performance or learning. (CHADD facts 4, 1991). The Americans with Disabilities Act (1990) provides another means of requiring all educational institutions to meet the needs of children with ADD. Despite these acts many children with ADD continue to be denied access to appropriate educational services. In order to investigate the services available for children with ADD/H in more detail two telephone interviews were conducted with experts providing services for children with ADD or ADHD in the US.

Services provided to children in the US

The centres contacted included the Keller Centre in Fairfax County, Virginia and the Child Development Centre in the University of California. Both centres provide a diagnostic and treatment service for children and adolescents with ADD and ADHD. The nature of the services provided in the Keller Centre are described first. The diagnosis involves a very comprehensive evaluation of each child by a treatment team of professionals comprised of two clinical psychologists and a psychiatrist. Each team would, on average, receive about five referrals per week. However, this is dependent on the time of year. The majority of referrals are between the months of January and April. This coincides with the grading period in American schools. The evaluation is detailed below. The centre caters for children aged three to 18 years. However, the bulk of the referrals are for children between the ages of six and twelve years of age. Children who are hyperactive usually present earlier. Initial contact with the centre is usually from a teacher or a parent on behalf of a child. An appointment is usually received within two weeks and testing is completed within five weeks of the initial contact.

Diagnosis and Treatment of Children at the Keller Centre

Initial contact involves an interview with parents and the child. The parent is questioned about the length of time a problem has existed, the impact on schooling, and the impact on family life. In the case of the child, the parent completes a behavioural checklist, noting the severity of the behavioural problems. An adolescent completes a self-report measure of behavioural problems. Teachers are also interviewed about the child.

Standardised questionnaires are also used in the evaluation process, these include the Achenbach, the Conners’ Rating Scale, an ADHD rating scale based on the DSM criteria, and an academic performance rating scale. Direct measures of attentional scales are also used, these include the Test of Variable Attention which is a continuous performance test lasting 22 minutes. Such tests are used since rating scales are often biased particularly when students have multiple teachers. An IQ test is also administered. Individuals are also directly observed through a two-way mirror while completing a cancellation task. This allows for a detailed observation of the child completing a task and they are monitored as to the frequency with which they stop the task, leave the seat, etc.

The diagnostic procedure is very precise and strict medical criteria are adhered to before a diagnosis of ADD or ADHD is made. It is very much a "ruling out procedure", that is, considerable time is spent ensuring that there are no other co-morbid conditions. These include oppositional –defiant disorder, mood disorders or depression, obsessive-compulsive disorder, Tourette’s Syndrome or behavioural tics. The majority of individuals seen (approximately 50%) would be diagnosed as ADD "not otherwise specified". Approximately 25%-30% would be both inattentive and hyperactive and the remainder would suffer from inattention.

At the end of the evaluation procedure a report is prepared and is discussed with a parent. If the child is diagnosed as ADD/H and this disorder impacts hugely on family life the individual is referred to a child psychiatrist for additional medical treatment. The child psychiatrist will usually prescribe drugs such as Ritalin or Dexedrine. Multiple medications are often prescribed to modify other behavioural problems, such as the Ritalin/Clonidine combination in order to modify aggressive behaviour. However, in the majority of cases parents are taught behaviour management strategies and are educated about the disorder. Parents are also encouraged to be advocates for their children. Other professionals would be involved in the provision of such services. In the case of adolescents they usually partake in some kind of family therapy.

Staff at the centre try to encourage teachers to implement some strategies to assist the child in the school setting, for example, modifying work, giving the child preferential seating, increasing test time. However it is still an "up-hill battle" in the US and there is much resistance in the schools. Although many teachers are aware of the disorder and assist in identifying the problem it is easier to put a child on medication and the schools "wash their hands of the problem". This is often the case even though the Americans with Disabilities Act (1990) requires all educational institutions to meet the needs of children with ADD as mentioned earlier.

Diagnosis and Treatment at the Child Development Center, University of California

The age range of clients is between four and 15 years of age. The center is comprised of a clinic that receives 700 clients each year, half of these would be follow-up visits and the other half would be new referrals. There is also a school in the center, this is essentially a public school incorporating intensive interventions including behavioural techniques and social skills training for 45 children on average. Children attend the school on a daily basis for one year. The center also has a research programme in operation involved in a number of research projects at any one time including non-stimulant drugs in the treatment of ADHD. The initial contact with the center is made by a parent or the teacher and the parent together, usually after school conferences as was the case in the centre described above.

In the assessment process standardised measures are not used. Rating scales are used and structured interviews are conducted with parents and teachers. Observational studies of the child in a classroom setting are also conducted. A physician in the centre prescribes medication if considered appropriate. Approximately 20-30% of all referrals are diagnosed as ADD or ADHD. Moreover there are about three-four times as many boys than girls attending the centre. According to the expert interviewed, adopted children are over-represented in the ADHD population. Another feature of the service provided is an eight-week training course in the management of the disorder for parents.

The above accounts are concerned with service provision for children with ADD/H. Services available for adults with ADD/H are described in the next section.

Diagnosis of Adults with ADHD in the US

DSM-IV criteria are used to diagnose adult ADD/H in the US. Great concern is taken to ensure that the disorder was present in childhood, this information is often obtainable from old school reports. The disorder in adulthood must be associated with some impairment and should not be better accounted for by another psychiatric or medical disorder such as depression, anxiety, substance abuse. The disorder must also be evident across different situations. Full psychiatric batteries are also conducted. Adults are generally aged between 18 and 50 years although in one case a person in their late 70s was referred for treatment. One service receives about 15 new referrals per month and in this centre approximately 40% of referrals would be diagnosed as ADD/H. In the ADHD service at the University of Massachusetts there are approximately 150-250 new evaluations per year. In this centre approximately 50%-60% of referrals were diagnosed as ADHD.

Treatment of Adults with ADHD in the US

Treatment include the following:

•Awareness and education about the disorder

•Treatment of co-morbid conditions

•Vocational or educational counselling

•Behavioural treatments

•Medical treatments (mainly Ritalin and Dexedrine)

Some of the behavioural programmes include training in self-management skills, for example, leaving keys in the same place, time management skills, organisational skills. Training is also provided regarding how to make good life decisions.

On the whole adults with ADHD respond very well to treatments. According to Dr. Kevin Murphy ADHD is "the most treatable condition in psychiatry, …however it is vital that a very thorough and comprehensive diagnosis is made".

Education of professionals regarding ADD in the US

The experts interviewed received minimal information about attention deficit disorder in college. The experts contacted were primarily self-taught and had many years of experience working with children and adults with ADD/H. There is no independent professional training in ADHD, however some colleges are now providing courses in ADHD. There are also conferences and workshops that are a source of information for many professionals interested in the area. Health-related professionals would not necessarily have the same level of interest or expertise in the area.

5.2 UK Situation

In Britain today the under-diagnosis of ADHD is serious and extremely worrying in the delivery of health care to the public (Cosgrove, 1997). This may be due to the fact that hyperkinetic disorder and ADHD, similar but not identical disorders, have competed for the attention of the medical profession. According to Cosgrove (1997) child psychiatrists and paediatricians fail to recognise 90% of those children with the severest form of ADHD, namely hyperkinetic disorder. Medications commonly used in the UK include methylphenidate (Ritalin) and dexamphetamine (Dexedrine). Medication is always suggested as an initial trial and carefully monitored, and only continued if there are positive results with insignificant side effects. However the medication use between different countries is quite striking. The figure of 0.03% of UK schoolchildren on stimulant medication compares with a figure of 1% in Australia and 2-3% for North America. Approximately 1% of UK children have severe ADHD so there appears to be a case of under-medication at present. There are over 120 parent organisations for ADD in Britain. The vast majority of UK doctors were not introduced to Attention Deficit Hyperactivity Disorders (Cosgrove, 1997). Moreover "…the vast majority of the medical profession in the UK, in addition to child psychiatrists, are finding themselves at a disadvantage when a parent comes into the surgery or clinic wanting to discuss ADHD" (Cosgrove, 1997, p. 102).

In order to investigate the ADD/H services available in the UK a brief account of the services provided in the Learning Assessment Centre and the Center Academy are described.

Learning Assessment Centre

The Learning Assessment Centre, an independent NHS and private provider, specialises in the assessment of children with ADHD, hyperactivity, concentration difficulties, behavioural problems, and learning problems. This multidisciplinary service includes as necessary the following:

•A paediatric and/or psychiatric assessment

•Psychological testing and advice, with a full report

•School liaison/teaching guidance

•Behavioural management and counselling advice are available if appropriate

•Child and adolescent psychiatry

•Medical treatment

Center Academy in London

The Center Academy has been evaluating children and adults for ADHD for over 25 years. The diagnostic procedure involves very careful gathering of information from the parents, the child and the school, a battery of neuropsychological test, medical involvement and a carefully monitored educational programme. The information for the evaluation procedure is gathered in two ways.

Firstly, the parents of the suspected ADHD child are interviewed in depth by the Director of Clinical Services. At this stage those with ADHD symptoms caused by temporary environmental issues can be filtered out. Secondly, a neuropsychologist gathers information through checklist format about the child’s behaviour from parents and teachers. This combination of information gives a clear picture of the child’s behaviour in a variety of settings. This is followed by a battery of neuropsychological tests and computerised tests of attention. So as can be seen from the above the diagnosis involves the information from a knowledgeable interviewer and a clinical psychologist, and possibly a medical practitioner.

The Center Academy has developed two types of Classroom Management called ‘Contingency’ and ‘Cognitive’ Systems. Contingency Management consists of overall school based methods developed after many years of experience of children with ADHD. Cognitive Management, on the other hand, is a teacher-student format which is fun and often ingenious. Educational curriculums at the Center Academy are individualised for self-completion rather than group completion. ADHD classrooms at the Center Academy have been specially designed with a child with ADHD in mind. The ideal classroom provides structure with limited distractions as well as the flexibility to address the child’s needs on an individual basis. Homework is designed to be successful and fun and to decrease stress in the home.

Motivation and attention are addressed for all students through the use of consistent reward systems and attention training devices, for example, fun activities at the end of the day or a day off school. Attention training devices allow for teachers to provide feedback to the students.

Socialisation difficulties are also addressed through classroom work and with the parents. Parent support groups have also been developed. Families also have the services of a trained ADHD counsellor. Indeed it is vital that the counsellor is part of the multi-modal team working with the family with ADHD.

In some cases it is appropriate to include a trial period on medication as part of the treatment process. At the Center Academy a number of stringent steps have to be followed before medical treatments are discussed with the parents. At the end of a trial period on medication the parents and physician would decide whether to continue with the medication based on any improvements noted. Even if further medication is prescribed once a year there is a trial period off medication to further assess the benefits. The paediatrician would have observed the child in the academic environment before and after the medical trial.

5.3 Summary of Objective Two

US services

•Children with ADD/H may qualify for special education and related services when ADD/H significantly impairs educational performance or learning (Department of Education, US)

•Specialist services for children and adolescents provide extensive diagnostic and treatment services for children and their families

•In the Child Development Center children can attend a school for a year that specifically deals with children with ADHD

•Individuals with ADD/H receive social skills training and are taught to manage and control their own behaviour

•There are large research programmes in the area of ADD/H

•There are specialist centres in the US that diagnose and treat adult ADD/H

•Adults with ADD/H respond very well to treatment

•ADD/H is "the most treatable condition in psychiatry"

UK services

•There are broad assessment and treatment services available to children and adults with ADD/H

•Assessment is a multi-disciplinary procedure

•Medication is strictly monitored and initially prescribed on a trial basis

•Family supports are provided

•There is an under-diagnosis of the disorder in Britain

•The Center Academy also runs a school for persons with ADD/H, everything, including the classrooms and school curriculums are specially designed to suit individual needs

6. Objective Three

To interview key personnel currently involved in providing services to persons with ADD/H in Ireland (including teachers, teacher training colleges, youth services). It is noteworthy that current services for persons with ADD/H is almost exclusively offered privately.

This section begins with a review of the services provided by an educational psychologist working in a school, followed by the findings of an interview conducted with a remedial and resource teacher. This section concludes with a review of college prospectuses for teaching training college and from universities in Ireland who offer a Higher Diploma in Education Course.

6.1 Educational Psychologist working in schools

The Educational Psychologist interviewed for the purposes of this study services over 20 schools, many of which are in disadvantaged areas. There is a ratio of one educational psychologist to every 5000 pupils. The age range of pupils is between four years up to about 12-13 years of age.

The educational psychologist provides a service to schools for children, parents and teachers. The services provided by the educational psychologist involves individual casework, assessment, consultation and working with teachers. The educational psychologist also provides in-service training for teachers on behaviour management.

The referral process

The educational psychologist was asked about the referral process within the school when children are suspected by the teacher as having ADD/H. However it was revealed that there are very few initial referrals where the teacher is concerned about ADD/H as teachers don’t generally recognise the disorder. In general, many children are referred with behavioural problems, some of which are children with ADD/H. The educational psychologist went on to say that it is very difficult to tease out behaviour due to learning difficulties and behaviour due to ADD/H. In cases were there are children with ADD/H the majority are boys. However, the educational psychologist did not know the exact percentage of ADD/H referrals. Referrals in general come from teachers via the school principal. There is a waiting-list but it’s generally never more than two months. After an assessment by the educational psychologist children with ADD/H are referred to child psychiatric services. The services needed for children with ADD/H according to the school educational psychologist are presented in the next section.

ADD/H services necessary

There are many services necessary in the treatment of the disorder including a clear diagnostic service and behavioural management programmes for parents and teachers. Children need to be taught how to control and manage their behaviour. Children with ADD/H can do well in mainstream with the services of a resource teacher to work on their skills and to help children manage their own behaviour. However there is a need for more resource teachers to provide such services. According to the educational psychologist parents and teachers need to work together. Moreover the educational psychologist felt that a school-based service is less threatening for parents and for children as it gets away from the medical model of treatment

Training and awareness of ADD/H

The educational psychologist had some training about ADD/H at college level however it was concerned with hyperactivity/hyperkinetic disorder and the educational psychologist felt there was a lot of confusion over different definitions of the disorder. Professionals within the field of educational psychology were becoming more aware of the disorder according to the educational psychologist interviewed. Moreover, teachers were becoming more aware of the disorder due to the presence of educational psychologists within the school service. In spite of this there is still a need for more teacher-training and proper ADD/H services. It was felt that there is little awareness about ADD/H among GPs.

In summary ADD/H services need to be provided at an early stage and children need better psychological services. Teachers and parents need training in behavioural management techniques and direct contact with professionals in the area is the best way to learn.

An interview was also conducted with a remedial and resource teacher the findings are presented in the next section.

6.2 The services of a remedial and resource teacher

The type of service provided by the remedial and resource teacher include a remedial service in reading and improving self esteem, craftwork and cookery, and crisis management. There were three remedial and resource teachers in the school in question providing a service to children aged between four and ten years of age. The remedial and resource teacher worked with one child with ADD/H although there was a second child with ADD/H who did not attend the remedial and resource teacher. There were other children with ADD/H symptoms seeing the remedial and resource teacher. According to the remedial and resource teacher interviewed there is a need for at least ten more remedial and resource teachers as the school is designated a disadvantaged school. Currently only those children with serious problems are seen by the remedial and resource teacher.

The referral process

Referrals come from teachers generally and children are usually referred because of behavioural problems or because of ‘falling behind’ in the class. The child with ADD/H would meet the remedial and resource teacher for reading approximately four times a week for 40 minutes and for an hour on two afternoons. There are many people in the school involved in helping the child with ADD/H, however this is on the principal’s initiative and not the Department of Education. The services necessary for children with ADD/H according to the remedial and resource teacher as presented in this section.

ADD/H services necessary

According to the remedial and resource teacher interviewed some children with ADD/H cannot cope with a large class they need to be in a small group, ideally a specific school for children with ADD/H. Placement at such a school may only be for a limited period, for example, until behaviour problems are under control. This teacher felt that within the ordinary school setting it is difficult to have a special unit for children with ADD/H. The open space within a normal school creates chaos for a child with ADD/H.

Awareness among professional regarding ADD/H

The teacher interviewed became aware about the disorder after being referred a child with ADD/H who was initially viewed as having bad behavioural problems. The teacher was not initially aware that there were strategies for coping with children with ADD/H and was basically self-taught about the disorder by attending conferences on ADD/H. The remedial and resource teacher has never heard of ADD/H within her professional training nor had the teacher heard about the disorder from the Department of Education. The professional opinion of the remedial and resource teacher interviewed was that there was little knowledge about the disorder within the education system. In this particular case the principal is very supportive of children with ADD/H.

This particular teacher has tried to heighten awareness about the disorder within the school, through liaisons with class teachers who carry on behavioural strategies in the classroom as do parents out of school. Further awareness about the disorder could be increased through the media, teacher training and professional training.

To conclude, this remedial and resource teacher felt there was a need for schools that dealt specifically with children with ADD/H. There was a need for increased awareness about the disorder and for professional training among the teaching profession. Services for children with ADD/H should not be dependent on interested teachers and the goodwill of school principals.

A brief investigation of teacher-training courses and the provision made for training teachers about ADD/H is presented.

6.3 Review of college prospectuses for teaching training college and universities

College prospectuses were reviewed to investigate if provision was made in the course content for training teachers in ADD/H. Generally, taught programmes referred to methods of dealing with students with special education needs and/or individual differences, to enable each and every pupil to make the most of their potential.¹ ADD/H specifically was not mentioned as part of the course content. However, it is noteworthy that such course prospectuses are very broad and in some colleges ADD/H may be covered in teacher training under the auspices of teaching children with special education needs and/or individual differences. As evident from the interviews with an educational psychologist and a remedial and resource teacher presented above teachers, in general, are not very aware of the disorder although specialists within the school system are heightening such awareness. Indeed many teachers may be aware of the disorder per se but are not able to cope with children with ADD/H in the ordinary school setting.

6.4 Summary of Objective Three

•Children are referred to the educational psychologist and the remedial and resource teacher with behavioural problems, ADD/H is not generally suspected by teachers when they are first referred and the child with attention deficit disorder only is being missed altogether

•After children are assessed by the educational psychologist they are usually referred to child psychiatric services

•Many services are needed for children with ADD/H including better diagnostic services, and behaviour management programmes for parents and for teachers who need to work together

•Children with ADD/H can do well in mainstream schools with the services of a resource teacher, however there is a need for more remedial and resource teachers

•Educational psychologists are increasingly more aware about the disorder however there is still a need for in-service training about ADD/H

•Teachers were increasingly more aware about the disorder but needed more training in dealing with children with ADD/H

•Currently much of the help received by children with ADD/H is due to a principal’s own initiative

•It is essential that school principals receive training in ADD/H

•The remedial and resource teacher had no formal training in ADD/H and was self-taught about the disorder

•There is a need for schools to cater for children with ADD/H

•The course contents from teacher-training colleges and universities referred to training in coping with children with special education needs. This is not to say that colleges and universities do not deal with ADD/H nor that all teachers are unaware of the disorder and unable to cope with children with ADD/H

7. Objective Four

To interview key medical personnel (including paediatricians, neurologists, psychologists and psychiatrists) who specialise in the field of Attention Deficit Disorders.

In this section interviews with two medical consultants involved in assessing, diagnosing and medically treating children and adolescents with ADD/H is presented. Both consultants have been working in the area of ADD/H for many years. Interviews with psychologists working in the area have been presented elsewhere in the report.

7.1 Interview with medical personnel

A child psychiatrist was interviewed in order to investigate the nature of referrals regarding ADD/H to medical consultants in Ireland. The psychiatrist receives approximately three new referrals each week. Referrals come from all over the country via hospital consultants. The age of the clients range from three to 16 years, however approximately 98% of all referrals are children with more boys than girls referred. It was not unusual to refer patients to other professionals, for example, speech and language therapists.

"In this country there is a need for diagnostic centres in each locality providing psychiatric, psychological and medical services as ADD and ADHD are under-diagnosed in this country". These centres should cater for the needs of children and adults with ADD/H. Also at a local level there is a need for seminars about the disorder to be conducted in order to heighten awareness. The Department of Education and Science and the individual health boards should be involved in the education of professionals and involved in increasing awareness of the disorder among the general public. There is a great need for Continued Professional Development (CPD) among all professionals especially in the area of ADD/H.

A consultant paediatrician was also interviewed regarding their experiences with persons with ADD/H. The paediatrician provides a medical service to children with ADD/H, who can be very young up to early teens. According to the consultant interviewed if ADD/H is not picked up while the child is of primary school going age, it is more difficult for them to respond to treatment, generally children respond very well to drug treatment. The consultant is currently working with approximately 100 patients with ADD/H and receives about 15-20 new patients a year. Patients are generally seen once a year. Others paediatricans are very aware of ADD/H. The paediatrician interviewed also works as part of a multidisciplinary team.

7.2 Summary of Objective Four

•The consultants are mainly treating children and adolescents with ADD/H

•The majority of the referrals are boys

•ADD/H needs to be diagnosed early for treatments to be successful

•Children respond well to drug treatment

•There is a need for diagnostic and treatment facilities for adults with ADD/H

•There is a need for diagnostic and treatment facilities in each locality

•There is a great need for Continued Professional Development (CPD) among all professionals especially in the area of ADD/H

8. Objective Five

To interview key personnel involved in ADD/H support groups namely the Irish National Council of ADD/H Support Groups and to access previous reports on ADD/H in Ireland conducted by the Support Groups. It is intended to identify the needs of families with persons with ADD/H and the needs of adults with ADD/H.

This section begins with a short outline of the ADD/H support groups in operation in Ireland. Reports completed by the support groups are referred to at the end of this section.

As outlined in the objective above the needs of the families of persons with ADD/H is also presented in this section. The majority of these families/parents are actively involved in support groups. Before presenting the findings a brief account of the methodologies employed are presented. Case studies are included at the end of this section to highlight some of the difficulties families of persons with ADD/H have experienced.

8.1 Support Groups

There are currently eight support groups around the country. These are located in Dublin, Cork, Kerry, Waterford, Wexford, Limerick and Cavan. There are two support groups in Dublin and a support group is currently being developed in Galway. These groups are now organised into INCADDS, the Irish National Council of ADD Support Groups.

The ADD Adult Family Support Group was established in November 1996 for families who suffer with or as a result of Attention Deficit Disorder. The group provides information and support for these families. The group meets once a month. The support group also receives calls from professionals such as social workers who are interested in learning about ADD.

HADD, based in Dublin, provides an information service. The membership of parents with children with ADD/H ranges from 170-180 within the Dublin area.

Cork’s support group has 130 members registered in the group. The group offers a helpline which provides information and support. The Cork Group received 1,198 related calls in two months.

In Galway, an information day was set up to determine the need for a support group in the area. As there is a definite need for a support group in the area, one is being set up.

The support group in Limerick provide an information and support helpline. The helpline is available to people 12 hours a day. There are 200 members in this support group. This group also provide conferences for interested parties.

TRADD in Kerry provides information and emotional support. Since March 1996, the group has been in contact with 67 families.

Parents from the National organisation have met with advisors to the Minister for Education and Science, and have spoken on several occasions with the Minister for Health. They have also been in contact with the Minister for Justice. The groups have produced many documents, some of which include:

•An Education Policy Statement, April 1997 produced by the Hyperactive/Attention Deficit Disorder Family Support Group, Dublin

•Submission to the Minister for Education and Science, Mr. Micháel Martin, January, 1998 by the Attention Deficit Disorder Mid-West Support Group

•Submission to the Working Group on Young Offenders, Department of Justice, Equality and Law Reform, December 1998 by the Hyperactive/Attention Deficit Disorder Child/Family Support Group and the Attention Deficit Disorder Adult/Family Support Group, both based in Dublin

The National Co-ordinator of INCADDS has also produced documents regarding the provision of services for those with ADD/H in Ireland including

•Proposal for an ADHD Unit

•Attention Deficit Disorder in Adults - A Proposal for Services

Many of the families involved in these support groups were interviewed for this study in order to ascertain the needs of families of persons with ADD/H in Ireland. The findings are presented in the next section.

8.2 Needs of families of persons with ADD/H

To assess the current needs of families in Ireland, a group of parents were contacted between November 1998 and January 1999 to discuss their views on service provision. A brief methodology for this survey is presented followed by the findings.

Method

Sample

The sample of participants in the study can be broken down into two categories:

•Parents of children with ADD/H

•Adults with ADD/H

These two groups are discussed separately. The names of parents of children with ADD/H, adults with ADD/H were given to the research team by the National Co-ordinator of INCADDS upon request.

Sample

A total of 21 parents of children with a diagnosis of ADD/H were interviewed for this study. Some parents (N=2, 10%) gave information for more than one of their children with ADD/H. Thus, information was collected on a total of 23 children (N=23, 100%), of which 21 were male and two female (N=21, 91%; N=2, 9%).

Procedure

A Letter of Information and Consent was devised for this study (see Appendix B). This document outlines the nature of the study and asks for participants’ consent. This letter was either read over the phone or read by each participant before becoming involved in the study.

If read by the participants themselves, they signed it to show their agreement to participate in the study. If it was read over the phone, their consent was sealed with the researcher’s signature.

A questionnaire was devised by the National Research Agency Ltd. for the purpose of this study (see Appendix C). Each parent was read the same questionnaire and was encouraged to give as much information as they felt necessary.

The majority of the interviews were conducted over the phone (N=17, 81%). The remaining four were conducted face to face upon the participants’ request (N=4, 19%).

The questionnaire can be broken down into seven broad sections;

1.Demographics

2.Diagnosis

3.Current services

4.Contact with professionals

5.Medical treatments

6.Future availability of services

7.Public knowledge of the disorder

Demographics

Within this section parents were asked who in their family has been diagnosed with ADD/H and the age of this person/people. Questions including the age problems were first noticed and the age problems were first presented to a professional were also asked.

Diagnosis

Questions concerning diagnosis, the professionals who made the diagnosis and the age of the child when diagnosed were asked.

Current services

At this point, parents were asked whether their child is receiving an additional service and if so whether they satisfied with this service.

Contact with professionals

In this section questions regarding current professional contact concerning their child were asked.

Medical treatments

Current use of drug treatments was explored in this section.

Future availability of services

Parents were asked what services they would like to see available for their son or daughter and who should be providing such services

Public knowledge of the disorder

Questions were asked regarding public and professional knowledge of ADD/H. Parents were also asked in their opinion how this knowledge could be increased.

The results of this study are presented below.

Results

As mentioned earlier a total of 21 parents (N=21, 100%) took part in this study. All of the parents who answered the questionnaire were mothers. Some mothers (N=2, 10%) spoke of more than one child, thus data was collected on 23 children (N=23, 100%). The majority of these were male (N=21, 91%) with two being female (N=2, 9%). Their ages range between five and a half years and 29 years. One person with no diagnosis was 29 years of age. The majority of people fell between the ages of five and a half and 14 (N=18, 78%). A total of 3 children (N=3, 13%) from the sample are adopted (see Table 1).

Table 1: Age of children

When parents were asked if their children attend primary or secondary school, it was reported that eight children (N=8, 35%) attend primary school, eight attend secondary school (N=8, 35%) and seven fall into the ‘other’ category (N=7, 30%) (see Table 2)

Table 2: Number and percentages of those attending primary school, secondary school and other.

A total of seven children (N=7, 30%) did not attend either primary or secondary school. This ‘other’ category can be broken down as follows. It was reported that almost half of these respondents (N=3, 43%) are currently not in school. Nearly 30% (N=2, 29%) are in a special school with one child (N=1, 14%) attending a special class (see Table 3).

Table 3: Breakdown of ‘other’ category.

Parents were then asked at what age did they first notice any problem in their children. A total of ten (N=10, 48%) parents reported noticing problems either before, during the birth of their child or before the end of his/her first year of life. A total of four parents (N=4, 19%) reported that they noticed problems in their child at 3 years of age. See Table 4 for more detailed results.

Table 4: Age at which a problem was first noticed

Participants were then asked at what age did they present these problems to a professional. The ages reported ranged from ‘never’ (N=1, 4%) to ‘eleven years’ (N=1, 4%). Only four parents (N=4, 19%) presented their children to a professional before the end of their child’s first year. The number of children who saw a professional during this time was four (N=4, 17%). A total of five parents (N=5, 24%) presented their child to a professional at three years of age. At the age of four years, three children (N=3,13%) visited a professional. From the ages of five to eleven, nine children (N=9, 39%) visited a professional. More information is displayed in Table 5.

Table 5: Age problem first presented to a professional

The next question asked was whether or not a diagnosis of ADD/H had been received by their child. The majority of children have received a diagnosis of ADD/H (N=21, 91%). One child has not yet received a diagnosis (N=1, 4%) whilst another was self diagnosed and felt no need to visit a professional (N=1, 4%). This is outlined in the table below.

Table 6: Number and percentages of diagnoses received

Parents were then asked who made this diagnosis. A total of 21 children received a diagnosis. Of these children, eleven were diagnosed by either psychiatrists or neurologists (N=11, 52%) with four children (N=4, 19%) diagnosed by a paediatrician. The same number (N=4, 19%) were reported as being diagnosed by a psychologist. Only one child was diagnosed by their General Practitioner (N=1, 5%) see Table 7.

Table 7: Number and percentage of children diagnosed by different professionals

Not all of these diagnoses were conducted in Ireland. A total of two diagnoses (N=2, 10%) were made in the United Kingdom. These were conducted by a psychiatrist and a psychologist (see Table 8).

Table 8: Number and percentages of diagnoses received in Ireland and the United Kingdom

It is interesting to look at the age of the child when the problem was first presented to a professional and the age when the diagnosis was received. The difference in years between the age when the problem was first presented to a professional and age at diagnosis ranges from the same year (N=6, 29%) to eleven years (N=1, 5%). A total of six children (N=6, 29%) were diagnosed as ADD/H within a year of their problems being presented to a professional. A total of four children (N=4, 19%) had to wait four years before receiving a diagnosis. Only three children (N=3, 14%) had to wait one year before their diagnosis was received. These results are displayed in the table below.

Table 9: Comparison between the age problem first presented to a professional and age at diagnosis

The next question examined whether or not the school system effectively meets the needs of these children. A minority of ten children’s needs (N=10, 43%) are effectively met by the school system. On the other hand, 13 children (N=13, 57%) do not have their needs met (See Table 10).

Table 10: Number and percentages of children whose needs are effectively met by the school system

Below are some of the responses of those parents who answered positively to the above question.

X could not cope in regular school and as a result is in a special class

When parents give the school information on ADD/H the school are very cooperative. Schools are not equipped to deal with it. As a result, we as parents work closely with teachers

My child is in a special school so can avail of speech and language therapy and occupational therapy. However there is no service for ADD/H

The school is very good

The teacher is working very closely with the mother. However next year will have to start from scratch and explain the situation to the teacher

X is managing well at the moment but could do with more help and support

Gave the school a lot of information on ADD/H.

Below is a sample of comments from parents who believe that the school system does not effectively meet the needs of their children.

My child needs daily remedial help in school which s/he is not receiving. S/he needs to be in a class specifically for children with ADD/H

Teachers are not interested

X was always in trouble in school. Now schools will not take the child in. Out of school for the last year and a half. New teachers are not being taught about ADD/H

X is in a classroom where the teacher is trying to teach four classes of a total of 14 pupils within the one room. This teacher is also the principal of the school. Son can not cope with the amount of homework and has lost his confidence. We (parents) are looking to change school where he can get the necessary remedial help

Receive empathy from teachers. We (parents) informed teachers of our child’s disability when he was in first year by passing around information from the support groups. X failed his junior Certificate. Teachers are not trained to deal with children with ADD/H.

X was very disruptive in school. Tried a number of different schools. Out of school since first year secondary school

Some teachers are supportive, others are just not aware of ADD/H.

X survived junior school due to my (mother’s) home tuition. At times had to be kept out of school due to his disruptive behaviour. Now he is in secondary school and cannot survive in a class of 33

X had to change school several times. Very disruptive in school. Did not have the ability to pay attention. Expelled from school and is currently at home

Teacher does not believe diagnosis. Although X is in a special school, his needs are not being catered for

X receives remedial help three times a week for 20 minutes. There is no resource teacher available to him. S/he needs this facility

Expelled from four different secondary schools. When attending a school with small numbers he did much better. When he was 15 years the educational psychologist said he was of university material

Suspended a lot from school at primary level

Now only doing three subjects in school. Can only attend for half days

Left there in school, it is only a babysitting service. If X had input from speech and language therapists in the past he would be doing fine now in school.

Problems in school. X is easily distracted. No memory for learning.

Parents were then asked if their children are receiving an additional service. A total of ten children (N=10, 45%) are receiving an additional service, these are detailed overleaf. However, it was reported that the majority of respondents (N=12, 55%) do not receive an additional service, (see the table below). One person is 29 years and living abroad thus information on this question was collected on 22 children.

Table 11: Number and percentage of children receiving an additional service

Different types of services were reported by those who are receiving an additional service (N=10, 45%). These include behaviour modification, resource teacher, physiotherapy in the Central Remedial Clinic, private remedial teacher, private tuition during the holidays, attending a homework centre sponsored by FAS, adolescent clinic, on to one tuition in school for six hours a week and group sessions with other children with ADD/H. It was reported that some children receive more than one service. These results are displayed in Table 12.

Table 12: Number and percentages of children receiving different types of services

Of the ten children who receive additional services, it was reported that the majority are satisfied with the service (N=7, 70%). However, three parents (N=30%) reported that they are not satisfied with the additional service their child is receiving (see the table below).

Table 13: Level of satisfaction with additional services

The reasons given by those satisfied with the additional services their children are receiving include the following.

Children need more than just Ritalin

Satisfied with service however have to drive ten miles there and back

… is receiving excellent group sessions

However, not all parents are satisfied with the additional services (N=3). Their responses are recorded below.

… needs second medication (Clonidine), behaviour modification is not enough on its own

Only adequate …. Needs more time with the resource teacher

X is not receiving a suitable service. Professionals in the clinic do not want to know about ADD/H. X needs therapy and social skills training.

Contact with professionals is the next area to be examined. This question was answered with regard to 22 children (N=22, 96%). Of the 22 children the majority of respondents (N= 21, 95%) do have contact with professionals. Only one child has no contact with any professionals (N=1, 5%) (see Table 14)

Table 14: Number and percentage of children who have contact with professionals

This issue was explored further with parents naming the types of professionals they have contact with concerning their child. A total of 32 responses were given to this question. It was reported that some children are seeing more than one professional. The types of professionals being seen include psychiatrists, clinical psychologists, neurologists, paediatricians and general practitioners. Psychiatrists are seen by 13 children (N=13, 41%) with nine (N=9, 28%) reporting contact with a clinical psychologist. It was reported that four children (N=4, 13%) see a neurologist. Only two children (N=2, 6%) have contact with their GP who administers medication and monitors progress. These results are displayed in the table below.

Table 15: Types of professionals children have contact with

The next question examined the area of medical treatment. Parents were asked if their child is currently receiving medical treatment. A total of 17 parents (N=17, 81%) responded positively with four parents (N=4, 19%) responding that their child was not receiving any such treatment (see Table 16). This question was not answered with respect to one person.

Table 16: Number and percentage of children receiving medical treatment

Different types of medication were reported by those receiving medication (N=18, 81%). These include Ritalin, Clonidine, Ritalin/Clonidine combination and Ritalin/Respiradone combination. It was reported that of the 18 children on medication, the majority (N=13, 72%) are on Ritalin. The results are displayed in the table below.

Table 17: Number and percentage of children taking different types of medication

Parents were asked if they find this medical treatment beneficial. Of the 18 children who receive medical treatment it was reported that16 children (N=16, 89%) find it beneficial. Only one parent (N=1, 5%) reported that it is not beneficial as it is only effective for an hour, she believes her son also needs Clonidine. Another parent (N=1, 5%) is unsure as to how beneficial the treatment is. She reported that it is somewhat beneficial while her child is in school, however she would like him to receive medical treatment for his oppositional defiant disorder (ODD) (see Table 18).

Table 18: Number and percentage of those who find medical treatment beneficial

Below are a sample of comments from those who reported that the medical treatment is beneficial.

Clonidine is more effective and cheaper than Ritalin. Ritalin made some difference but dulled part of him

Although the Ritalin is extremely effective, there has to be some alternative, it is awful to be giving your children stimulants

One day X forgot to take his Ritalin and was very disruptive in school

Ritalin not sufficient for his behaviour

When X is on the Ritalin Clonidine combination, benefits can be seen within months. The medication keeps his ideas and thoughts at bay

Without Ritalin s/he is terrible in school

With Ritalin there is a big improvement in X’s concentration

Ritalin is not a miracle answer but a crutch

When X is on medication he can sense fear, without it he is unable to do so.

A total of four parents responded that their children were not receiving medical treatment. When asked if they would like their child to receive such treatment, two parents reported that they would not like their child to receive medical treatment. Reasons for this are outlined below.

….became depressed on it

….is not hyper but anxious, panics and is a perfectionist

The remaining two parents are unsure whether or not they would like their child to receive medical treatment. Their responses are recorded below.

If s/he gets very distressed maybe it would be a good option. Perhaps s/he would do better in education due to increased attention.

… does not believe he needs medication

Future availability of services

The following section examined future availability of services. Parents were asked what services they would like to see available for their child. The services reported can be broken down into seven categories.

1.Services within the educational system

2.Professional awareness

3.Special facilities

4.Financial assistance

5.Vocational training

6.Diagnosis and treatment

7.Understanding

A number of parents (N=12, 57%) would like to see services within the educational system. A total of 32 responses were given as some people gave more than one response Better diagnosis and treatment was reported by five parents (N=5, 23%) with the same number (N=5, 23%) calling for public and professional understanding. Other parents (N=4, 19%) would like to see greater professional awareness (see Table 19).

Table 19: Future availability of services

Below are a sample of responses given to the above question.

Need for a remedial teacher for the child and for the sake of the teacher and class

Teacher training for those in national, secondary and remedial teaching. As ADD was not studied in college teachers think it does not exist

If teachers don’t know what ADD is they can’t deal with it. It can’t be left up to the parents to take on the schools

ADD children need to be able to sit exams separately. Perhaps they could build up a portfolio instead of sitting the regular Leaving Certificate

Official recognition of this condition within the Department of Education

Need a code of practice in schools

Need to be taught social skills in schools

One to one attention within class

Special class for children with ADD within the school

Classroom assistant, resource teacher, remedial teacher

Smaller classes within school, teacher training, inservice courses on ADD for teachers

Need for diagnosis and treatment

Suitable professionals

Need for professionals to be educated within the area

Greater professional awareness

Need for well informed and well trained professionals

Suitable residential care inclusive of schooling and structure and staff who understand ADD/H

Psychological service like that provided in Crumlin

Speech therapy, Occupational therapy

Domicillary care assistance, financial assistance

Training so that X can go out and work

Strict protocol for diagnosis within the Department of Health

Availability of certain medications in Ireland

Need for treatment and diagnosis

Children need to meet once or twice a month with a psychiatrist to have their weight, height and blood pressure checked. They should have an EEG every six months

Correct medication

We want to be listened to, we have come across a lot of opposition along the way

Need for and understanding of the individual aspects of ADD, not only look out for hyperactivity

Support from people such as public health nurses

In a follow up question, parents were asked who in their opinion should be providing such services. The answers given are as follows. A total of 19 out of 21 (N=19, 90%) respondents answered the question giving rise to a total of 37 responses.

Parents expressed that the Health Boards and the Department of Education should be responsible for providing services for people with ADD/H. The Department of Health and the Department of Justice should also provide services according to the respondents in this study. Of those who answered this question, six participants reported that it should be a combined effort between the Department of Health, the Health Boards, the Department of Education and the Department of Justice. These results are presented in the table below.

Table 20: Service providers

The next section looked at support groups. Parents were asked if they attend a support group. All respondents (N=21, 100%) answered this question positively (see Table 21).

Table 21: Number and percentage of parents who attend a support group

When asked to give their comments a total of 16 parents (N=16, 76%) gave their comments. Many people gave more than one comment, giving rise to 21 responses. Participants (N=12, 57%) responded that they receive great support from these groups. Parents (N=5, 22%) reported that the support groups are also a great way to gain information on ADD/H and learn about the latest developments in the area. Many people (N=4, 17%) felt isolated before they joined the group, now they realise that they are not alone. (see Table 22).

Table 22: Comments on the support groups

Below is a sample of comments to the above question

Realise ADD is nothing to be ashamed of

No help for parents outside of the Support Groups, keep coming up against a brick wall

Receive useful information, great to meet other parents and talk about the latest developments

Would be dead without it

Vital for parents. The group needs more support if it is to get interest from the Department of Education

Could receive financial assistance through information given out by support group

Without groups parents are isolated and devastated

Went to group looking for help before son was diagnosed

Parents were asked if their child attends a support group. A total of 21 parents (N=21, 100%) answered on 23 children (N=23, 100%). It was reported that none of the children attend a support group. The results are reported in the table below.

Table 23: Number and percentage of children attending a support group

A total of 18 parents (N=18, 86%) gave their comments. The majority of parents (N=15, 71%) believe that it would be beneficial for their child to attend a support group. Some parents gave more than one response (see Table 24).

Table 24: Comments regarding children attending a support group

Below is a sample of the responses given.

Group would be beneficial, it would have to be in a day centre with facilitator

These children know they are different, it is good for them to have support, otherwise they feel alone

These children need a support group so they can talk of their fears, methods of coping, etc. They are a very vulnerable type of people, they need friendship and affection

There could be a provision for social evenings for children

A social club would be good for teenagers and older children to get together and talk

It is a good idea for children to join a support group. As ADD/H effects the whole family, support groups should be more family orientated.

The next section examines the level of knowledge in others of ADD/H. Parents were asked in their opinion how knowledgeable are the general public, school personnel, politicians, the medical profession of ADD/H. A total of 31 responses were given. In general, respondents felt that there is no knowledge (N=14, 45%) regarding ADD/H. Some people (N=6, 19%) expressed the opinion that in areas where the support groups are active people are slowly becoming more knowledgeable. It was also noted by two participants (N=2, 6%) that professionals have little or no knowledge on ADD/H and there is an unwillingness for the authorities to recognise it (N=1, 3%). The media was blamed for sensationalising ADD/H and reinforcing stereotypes. A couple of parents reported that people think their child is bold. These results are displayed in the table below.

Table 25: Reported level of public knowledge

Within the category of public misunderstanding, parents reported that people believed that they are bad parents or that their child is simply bold. Below is a sample of responses to this question.

People have no knowledge unless they are living with a person with ADD/H

Most people think that these children are just bold

Had to show X’s educational assessment to the neighbours so that they would believe me

People don’t understand

People focus in on the sensational aspects of ADD/H

Schools have no knowledge

General practitioners and psychologists have no understanding of ADD/H

Some people don’t accept it as a disorder

Because ADD/H presents itself differently across the board, people don’t recognise it.

Parents were then asked how knowledge of ADD/H could be increased. The responses given to this question can be broken down into five categories. These are

1.Through the media

2.Through appropriate teacher training

3.Through support groups

4.Parents need to educate others

5.Through professional training

All respondents (N=21, 10%) answered this question, with some giving more than one response. The total number of responses given was 30 (N=30, 100%). A total of eleven (37%) participants reported that knowledge could be increased through the media. ADD/H could be highlighted more on TV, on the radio, in the papers etc… Another group of participants (N=10, 33%) reported that knowledge could be increased through appropriate teacher training in ADD/H. Professional training was reported by five participants (N=5, 17%) which includes training for medical professionals including nurses and others such as the gardai. These results are displayed in Table 26.

Table 26: How can knowledge be increased

Below is a sample of responses to this question

Educated professionals in the area should be more visible and talk to the media

Teachers need to be trained in the area even at play school level

People should be given an untreated ADD/H child to look after for a week

The Health Boards have a responsibility to train nurses and doctors

There should be more support groups set up around the country

Literature from the support groups should be available in general practitioners surgeries and libraries

Parents were asked if having a child with ADD/H has an impact on day to day family life. This question was answered by all participants (N=21, 100%). A total of 20 parents responded that it does impact on family life (N=20, 95%) with one parent responding otherwise (N=1, 5%). See Table 27.

Table 27: Number and percentage of participants reporting an impact on family life

The main comments from those who responded that it does have an impact on family life included the fact that it is very stressful for the whole family, siblings are affected and it creates tensions between husband and wife.

Here is a sample of responses to the above question.

It is a daily endurance test

Very stressful on relationships

Immediately judged as a bad parent and a dysfunctional family

The children have had to lock themselves in the bedroom for safety

Devastating…..impacts on neighbours and people you interact with

Rarely get out as a couple

If child is diagnosed, supported and medicated early it won’t badly affect the family. If untreated and severe it can result in a broken household

In past years I did not want to wake up in the morning

Heightens stress levels in the family especially when my child is not on Ritalin

Huge impact, affects siblings

Devastating, very restricting, can trust very few people with him

Can cause ructions in split seconds

Finally parents were asked if they have any other comments to make for this report. A total of 14 parents gave comments.

ADD/H has to be handled in a positive way. Kids cannot be ashamed of it. Once treated it is easier to handle

Department of Health and Department of Education have to work more closely together

It is a major problem all over Ireland

We have to continue to make people aware

I have become angry because the support system is not there for the child. It is negligence on the part of the professionals who don’t want to learn or provide services

The health system is letting people down

We need more support groups

"To the Department of Education, we would ask you to put in place now an educational system for all our children. To our politicians, as parents of these children we feel very strongly that it is your moral duty to ensure that all the requirements that our children need be put in place immediately. What is the cost of education compared to the building of prisons etc… Prevention is better than cure."

Siblings need to be catered for. They need support and help

Wake up, support and listen to parents particularly in schools

There is a need for recognition, care and treatment for those over 16 years of age

Need for financial support

Those who are currently out of school, what is in place for them? Youthreach does not meet their needs

Need ongoing support

Public need to be aware. Mothers and fathers need support

Life is coherent and structured however if there is a weak link in the chain of support it will throw the child into disarray.

8.3 Needs of Adults with ADD/H

The next section details the experiences of adults who are ADD/H. A brief study methodology is presented followed by the findings of interviews with adults themselves or the parent of an adult with ADD/H.

Method

Sample

The sample of participants in this study includes adults with ADD/H. Names of these adults with ADD/H were given to the research team by the National Co-ordinator of INCADDS.

A total of five adults with ADD/H were interviewed for this study. However, only two adults spoke about their experiences directly (N=2, 40%) whilst three parents (N=3, 60%) spoke on behalf of their children.

Procedure

A Letter of Information and Consent was devised for this study (see Appendix B). This document outlines the nature of the study and asks for participants’ consent. This letter was either read over the phone or read by each participant before becoming involved in the study. If read by the participants themselves, they signed it to show their agreement to participate in the study. If it was read over the phone, their consent was sealed with the researcher’s signature.

A questionnaire was devised by the National Research Agency Ltd. for the purpose of this study (see Appendix D). For those participants answering about themselves, the original questionnaire was amended slightly to be more appropriate. Each participant was read the appropriate questionnaire and was encouraged to give as much information as they felt necessary.

The majority of the interviews were conducted over the phone (N=4, 80%). The remaining one was conducted face to face upon the participants’ request (N=1, 20%).

The questionnaire can be broken down into several broad sections, these are outlined on the next page.

1. Demographics

2. Diagnosis

3. Current services

4. Contact with professionals

5. Medical treatments

6. Future availability of services

7. Public knowledge

1.Demographics

Within this section parents were asked who in their family has been diagnosed with ADD/H and the age of this person/people. Questions including the age problems were first noticed and the age problems were first presented to a professional were also asked.

2.Diagnosis

Questions concerning diagnosis, the professionals who made the diagnosis and the age of the child when diagnosed were asked.

3.Current services

At this point, parents were asked whether their child is receiving an additional service and if so are they satisfied with this service.

4.Contact with professionals

In this section questions regarding current professional contact concerning their child were asked.

5.Medical treatments

Current use of drug treatments was explored in this section.

6.Future availability of services

Parents were asked what services they would like to see available for their son or daughter and who should be providing such services

7.Public knowledge

Questions were asked regarding public and professional knowledge of ADD/H. Parents were also asked in their opinion how this knowledge could be increased.

Results

A total of five adults with ADD/H were interviewed for this study. However, only two adults (N=2, 40%) spoke about their experiences directly whilst three parents (N=3, 60%) spoke on behalf of their children. There were four males and one female interviewed (N=4, 80%; N=1, 20% respectively). The age range is between 19 years and late 40s. It was reported that two participants (N=2, 40%) are adopted. Participants fell into the following age bands. This is presented in the table below.

Table 28: Age of participants

Participants were asked at what age problems were first noticed. Only one participant (N=1, 20%) reported always feeling that s/he was different. However it was not until s/he was reading up on ADD/H for his/her child that ADD/H was considered. Another participant became aware it was ADD/H at 45 years. The other three participants (N=3, 60%) noticed problems at three years, as a child and when they were very young (see Table 29).

Table 29: Age first problem noticed

Participants were then asked at what age were these problems presented to a professional. The ages reported ranged from ‘Never’ (N=1, 20%) to ’34 years’ (N=1, 20%). A total of three participants attended a professional before and up to the age of ten (N=3, 60%). This information can be seen in Table 30.

Table 30: Age problem first presented to a professional

The next question examined whether or not a diagnosis of ADD/H has been received. The majority of participants have received a diagnosis of ADD/H (N=4, 80%). One participant has not yet received a diagnosis (N=1, 20%). This is outlined in the table below.

Table 31: Number and percentage of diagnoses received

Participants were then asked what professionals made the diagnosis. The majority of participants have received a diagnosis (N=4, 80%). Of this number, a total of two participants (N=2, 50%) were diagnosed by psychologists with two participants (N=2, 50%) diagnosed by a psychiatrist.

Table 32: Who made the diagnosis?

As was the case with children with ADD/H, not all of these diagnoses (N=4, 100%) were conducted in Ireland as one (N=1, 25%) was received in the United Kingdom. This can be seen in the Table below.

Table 33: Number and percentage of diagnoses received in Ireland and the United Kingdom

It is interesting to compare the age of the adult when the problem was first presented to a professional and the age when the diagnosis was received. A total of four adults (N=4, 80%) have received a diagnosis. One participant waited ten years for a diagnosis (N=1, 25%), one respondent (N=1, 25%) waited fourteen years and another waited 15 years. These results are displayed in the table below.

Table 34: Comparison between age problem presented to a professional and age of diagnosis

Participants were asked whether or not the school system effectively met their needs. All respondents (N=5, 100%) reported that their needs were not effectively met by the school system (See Table 35).

Table 35: Does the school system effectively meet your needs?

Below is a sample of comments to this question

I was told I was stupid. I left school at 15 years of age

I did my leaving Certificate, I grew up with teachers in my family and extended family

Left school at 15 years

Expelled from school a couple of times before the Junior Certificate. Couldn’t cope at all in secondary school. Left school after the Junior Certificate

School was a disaster, expelled from four different schools. Did well in small schools. At 15 years, educational psychologist reported that X is of university material. X is currently studying in third level education.

Participants were then asked if they are receiving an additional service. The majority of respondents are not receiving an additional service (N=4, 80%). It was reported that one person is receiving an additional service (N=1, 20%) (see Table 36).

Table 36: Number and percentage of participants receiving an additional service

It was reported that one participant (N=1, 20%) is receiving an additional service. It was reported that this person is attending a counsellor and is very satisfied with this service. The reason for such satisfaction is given below.

Counsellor has a good attitude, one of acceptance

Contact with professionals was the next issue explored in the study. All of the participants (N=5, 100%) answered this question with four adults (N=4, 80%) reporting that they do not have contact with professionals. Only one participant has contact with any professionals (N=1, 20%). See the table below

Table 37: Number and percentage of respondents who have contact with professionals

The professionals mentioned by the respondent who answered positively (N=1, 20%) are a counsellor and a psychiatrist (See Table 38).

Table 38: Professionals contacted by respondents

The next question examined the area of medical treatment. Participants were asked whether or not medical treatment was being received. A total of four participants (N=4, 80%) responded negatively with only one participant (N=1, 20%) responding positively. These results are displayed in the table below.

Table 39: Number and percentage of respondents receiving medical treatment

Ritalin is the medication taken by the respondent (N=1, 20%) receiving medical treatment, it was reported that such medication is very beneficial.

The majority of respondents (N=4, 80%) responded that they are not receiving medical treatment. When they were asked if they would like to receive such treatment, all respondents (N=4, 100%) answered positively. Reasons for this are outlined below

Would like to take Ritalin as I have seen what it can do for my children

Would like to stop my mind racing

Don’t know if my child will take it, needs a counsellor to tell him to take the medication and not to mix it with alcohol

The following section examined future availability of services. Participants were asked what services they would like to see available for adults with ADD/H. The services reported can be broken down into eight categories. Some respondents gave more than one response.

1.Services within the educational system

2.Professional expertise

3.Support groups

4.Diagnosis and treatment

5.Special facilities

6.Understanding among professionals

7.Prevalence Study

8.Appropriate psychiatric services

All of the participants answered this question. A total of eleven responses were given (N=10, 100%). A total of two participants (N=2, 20%) would like to see more expertise in the area (see Table 40).

Table 40: Future availability of services

Below are some of the responses to this question

Understanding of ADD/H among the teaching professions and psychiatrists

Proper school psychological service

A clinic in Dublin

Prevalence study

There is a need for expertise and educators in this field with regard to treatment and medication

Psychiatrists need to become more expert in the area

Need allocation of a social worker to act as a link for a person with ADD, to act as an advocate

Need for a support group for the entire family

Proper diagnosis

A management programme for ADD/H sufferers and parents

Current psychiatric service is diabolical

No place for X to go in the future

In a follow up question, participants were asked who in their opinion should be providing such services. A total of three respondents answered this question (N=3, 60%) giving rise to five responses. Of this total two participants (N=2, 40%) responded that the Department of Health should be responsible for the provision of services. The Department of Children and the Family, the adoption society and the medical profession were also reported as being responsible for providing such services (see Table 41).

Table 41: Service providers

Below are some of the comments on this question

Services have to be a legal right of children. The Department of Children and Family have to be responsible that educational and medical services are available

Predominately a health problem

Medical professionals need to be aware and recognise that services should be provided

Adoption society has a responsibility in this area

Want availability of services without having to fight

The next section examines the area of support groups. Participants were asked if they attend such a group. Only two of the respondents (N=2, 40%) attend a support group while the remaining (N=3, 60%) do not. These results presented in the table below.

Table 42: Number and percentage of participants attending a support group

Participants were asked in their opinion how knowledgeable are the general public, school personnel, politicians, the medical profession of ADD/H. A total of seven responses were given (N=7, 100%). In general, it was reported (N=3, 43%) that there is no knowledge or very little knowledge out there regarding ADD/H. A total of two participants (N=2, 29%) mentioned that some people do not accept it as a disorder. However two participants (N=2, 29%) reported that people are becoming more aware of ADD/H (see Table 43). Some people gave more than one response.

Table 43: Reported level of public knowledge

Below are a few of the comments on this question

Only people who have children with ADD are aware. Health nurses are more aware of ADD/H than doctors who don’t want to know about it

Growing awareness in the political arena

Teachers won’t admit that it exists until they are trained

Some people don’t accept it as a disorder

General Practitioners do not care

Gardai are becoming more knowledgeable

Participants were then asked how in their opinion could knowledge of ADD/H be increased. A total of three respondents answered this question (N=3, 60%). All of the responses fall within the area of training and education.

Teachers could be shown videos. These videos would be more beneficial if they represented the Irish situation

Probation officers, prison officers and the Gardai need to be taught how to spot the key indicators

People need to be educated in this area

The penultimate question examined whether having a member of the family with ADD/H has an impact on day to day family life. This question was answered by all participants (N=5,100%) who all responded that it does impact family life (see Table 44).

Table 44: Number and percentage of respondents reporting an impact on family life

Below is a sample of responses to this question

Since I have a label on it I am more relaxed and happier

It is a major threat to family cohesiveness

Older son had a difficult time in school due to his brother’s behaviour

Big impact on the other children

Finally participants were asked if they have any other comments to make for this report. A total of four respondents (N=4, 80%) gave comments. These are as follows

I tried to get back into adult education but I had no concentration. However if on Ritalin I could have sat, listened and learned

ADD spectrum is a disability. "ADD is like driving a car you don’t know how to control"

Need for financial support

We need a better service for children

No services for adults or adolescents unless you commit a crime

I see no future for X

The findings for children and adults with ADD/H are summarised in the next section.

8.4 Summary of Objective Five

Support Groups

•There are eight support groups in Ireland, located throughout the country

•These groups provide information and emotional support to families of children with ADD/H

•These groups also run telephone helplines

•These groups meet with government ministers

Needs of families of persons with ADD/H

•The majority of children under discussion were male and aged between five and 18 years

•In the majority of cases, a problem was first noticed before the age of three years

•The majority of children had been diagnosed as ADD/H, however some parents waited up to eleven years to receive a diagnosis or traveled to the UK for a diagnosis

•In the majority of cases the school did not effectively meet the needs of children with ADD/H, it was very much dependent on the particular school or teacher

•Currently, the majority of children have contact with a professional either a psychiatrist or a clinical psychologist

•The majority are currently on Ritalin and 16 out of 18 who are receiving medical treatment find it beneficial, or want an additional drug prescribed

•There is a need for services within the educational system as well as improved diagnostic and treatment facilities

•Primarily the Department of Health and Children and the Department of Education and Science should be responsible for the provision of service

•There is a need for support groups for children

•There is a need for a greater understanding of the disorder among professionals and the general public

Adult opinions

•Adults received a diagnosis much later in life, one person waited 15 years for a diagnosis

•No one felt that the school system effectively met their needs as children

•Only one adult has contact with a professional

•Only one adult is receiving medical treatment although the majority would like to opportunity to undergo medical treatment

•ADD/H had impacted greatly on their family life

8.5 Case Studies

Some case studies are presented in this section in order to highlight the problems families of children and adults with ADD/H have encountered over the years. The names of the individuals of some details have been changed in order to protect their identity.

Sam

‘Nightmare’ is the word one mother used to describe the first 15 years of her son’s life. Having recognised Sam experiencing problems when he was ten months old and following many attempts to get help, his mother did not receive a diagnosis for his problem for another 14 years. She apportions much of the blame to the "appalling" psychiatric services that she found herself in contact with in these years. At one stage Sam was recommended speech therapy as a solution to his problems.

Trouble in the playground and disruption during the school lunch hour resulted in Sam having to move schools. This violence was also evident at home as more and more domestic difficulties arose.

After several professional opinions, Sam’s mum said she felt the finger was being pointed at her. She wondered if Sam’s problems were family related and whether the whole issue was a parental one. Having sought help from professionals here and in England, Sam was prescribed a combination of drugs.

Sam has contemplated suicide. Sam became aware of ADD/H while listening to a radio programme about the disorder and felt as though the programme might as well have been about him.

Mum believes the general public, school personnel, politicians and the medical profession are not aware of ADD/H. There has been more publicity for ADD/H recently and the word is being spread. She said, "There are people out there who don’t want to know about ADD/H. They have the impression that it’s a middle class spoilt kids problem, so we have a battle on our hands. We need to spread awareness and get training to primary school teachers."

Noel

At seven months, Noel’s mother was concerned at the amount of time he spent crying. A specialist told her that he was the type of baby who cried a lot. He was never accepted in school. In fact, one playschool asked her to remove him from the school. He constantly caused trouble and was very disruptive. Things were terrible at home and there were problems with the neighbours.

In fourth class, Noel’s teacher asked his mother if he would attend the school psychologist, which he did for one year. However, the psychologist made reference to Noel’s ‘dysfunctional family’ and told his parents their parenting was inadequate.

He was then referred to a psychologist and ADD/H was identified, eleven years after problems were first noticed. Noel was prescribed Ritalin, but to no avail. The dose was increased, but his condition did not improve. A combination of Ritalin and Clonidine proved more successful. His behaviour changed dramatically.

Mum describes herself as being near breaking point. She has no back up or support services. Her recommendations for children with ADD/H include residential care for these children, supported by a schooling structure and staff who know how to deal with the problem. "My own social worker did not know what ADD/H was. In the US, they have residential care. Here, we have detention homes. We need informed and well trained professionals in this country", she said.

Noel’s mother believes the health boards, social workers, psychiatrists and psychologists should work with the Departments of Education and Justice in tackling ADD/H. She believes it would be beneficial for her son to be in contact with another ‘ADD/H child’. The media, radio, television and newspapers could do more to spread awareness. In Noels’ case, the

Gardaí are helpful. A liaison officer attends meetings to learn more about ADD/H and

follows this up with visits to Noel’s home.

James

A drink problem, drug involvement, threatening people and a prison sentence at a very young age are just some of the problems experienced by one man with ADD/H.

James displayed odd behaviour as a child and as things worsened, his parents sought professional help when he was just ten years of age. He was diagnosed as having a personality disorder. His parents had read up on ADD/H and suggested the possibility of James having this disorder to his GP. Many years later a doctor in the UK diagnosed James as having ADD/H nine months ago.

A support group for parents of children with ADD/H has been set up in his area. However, it came too late for James’ family. James is not willing to tackle his problem. He told his father that a support group "can do nothing for him".

James has never worked and has no qualifications. Having ADD/H has made him very vulnerable. He now has a barring order preventing him from returning home.

Martin

"I know things shouldn’t be the way they are. I get so angry because the support system is not there for my child. I’m so frustrated and demented. The professionals were negligent. They don’t want to learn about ADD/H or provide the necessary services. If my son could have been diagnosed earlier, we could have avoided all this pain". These strong words describe how one mother is coping with ADD/H.

Martin was experiencing difficulties at two years of age. After seeing many professionals during childhood no one could say what was wrong.

He was expelled from primary school. As early as ten, he was dabbling in drugs and drinking Martin’s school had realised the extent of the problem. The school paid for him to see a psychologist who tried behaviour modification and family therapy, but Martin’s condition deteriorated. He also introduced many of his neighbours’ children to drugs.

In his early teenage years, he was a familiar face with the Gardaí. He was renowned for small robberies, taking drugs and fighting. Martin’s mother said, "The Gardaí were very tolerant and understanding, even in his early violent days. The Gardaí offered me support.

When Martin was 15, his mother was suggesting ADD/H to doctors. At 17, his drug habit had worsened and he had become more aggressive. The support group recommended that he undergo an assessment, and in February 1998, he attended the Assessment Centre in the UK. At 18 years of age, he was diagnosed "with severe ADD, conduct disorder".

His mother said, "I would like to see a daycare centre with trained people who know about ADD and have received social skills training to deal with it. I wrote to the health board and enclosed a report from England. I’m still waiting for a reply with their recommendations." One psychiatrist specialising in adult care told her she was an overprotective mother and said that Martin’s problems would diminish if he obtained a job.

9. Objective Six

To interview key personnel involved in developing curricula and specialised vocational programmes for children and adults with ADD/H and investigate the resources needed to implement such programmes in Ireland. Particular attention will be given to the development of a curriculum for young adults with ADD/H and the work of Youthreach.

This section defines the Youthreach Service in the country. This section is relevant to this study because many adolescents with ADD/H cannot cope within the secondary school system and often attend Youthreach Centres during the day instead of formal schooling. However, there are no specialised vocational programmes for children and adults with ADD/H.

9.1 Youthreach Services

There are over 70 Youthreach Centres provided by VECs around Ireland catering for approximately 2,814 adolescents between the ages of 15 to 18 years. This service is for adolescents who have left school early with no formal qualifications. Youthreach services are provided in an out-of-school setting. Youthreach courses have a one year Foundation Phase and a second year Progression Phase. A training allowance is paid, this is between £25-64.50 per week depending on age.

The key characteristics of a Youthreach centre as a follows;

(taken from a presentation by M. Kelly, Department of Science and Education, June 1998)

•A focus on the holistic development of the individual

•A team approach to the running of the centre, with staff agreement on a mission statement and centre policies, and with the delivery of the programme subject to ongoing self-appraisal and review

•A safe learning environment

•A programme which is participant centred and participant led

•Staff open, facilitating and animating rather than teaching

•A focus on the core competencies of literacy/numeracy, communications, teamwork, analysis and decision-making

•A range of vocational disciplines with new technologies

•National certification

•A strong community base and good contact with local agencies

Developments for Youthreach according to Kelly (1998) include the adaptability to cater for persons with special needs. Currently there is little in the way of support or psychological services within Youthreach, especially in centres located outside of Dublin. This is outlined in the section below. A second development is the provision of capital in areas where the infrastructure to provide Youthreach services is not in existence. Multiplexes may be developed which will house a variety of community services or old premises which could be upgraded or revamped. The development of multiplexes to provide community services are designed in such a way as to allow for the changing needs and demands of service-users.

Within the County Dublin Vocational Education Committee (CDVEC) area the equivalent of two full-time counselling psychologists are employed in these centres. Apart from the CDVEC area, in general, adolescents in other Youthreach locations do not have access to psychological support. However, if they do receive psychological support it is on a very occasional basis. A task force has examined the counselling and psychological service requirements of the centres to prepare a plan for improvement in the context of additional ESF provision of 1 million ECU arising out of the Mid -Term Review of EU structural funds.

The proposals contained in the Report for the development of Guidance, Counselling and Psychological Services for Youthreach recommend that the emerging provision for Youthreach Centres should be compatible with and related to developments in the provision of a New National Educational Psychological Service. In addition to counselling provision there is also a need to consider support for staff in dealing with issues and problems which are likely to arise. Access to an educational psychologist from time to time is seen as part of the various supports for the centres. There will also be a need for psychological assessments according to the National Educational Psychological Service, Report of Planning Group (1998)

When the above systems are operational and Youthreach staff have received additional support and training Youthreach centres may then be able to deal with the needs of persons with ADD/H.

An interview with Dermot Stokes, National Co-ordinator, Youthreach revealed that there are currently no specific programmes for young adults with ADD/H in Youthreach Centres. There is anecdotal evidence from staff that individuals with ADD/H have attended Youthreach Centres, however these were the individuals most likely to ‘drop-out’ of the system.

The National Co-ordinator was asked about the possibility of developing a curriculum specifically targeting adolescents and young adults with ADD/H. While the National Co-ordinator saw no problems in designing a tailor-made curriculum for persons with ADD/H it is essential that a national prevalence study be conducted first in order to ascertain precise numbers of young adults with ADD/H. Moreover, Youthreach staff would need training in dealing with young adults with ADD/H.

Currently, Youthreach educational curriculums are not highly structured and are very flexible. In essence this does not suit the young adult with ADD/H who is more suited to a structured environment. However, by virtue of the fact that Youthreach centres are flexible it may be possible to accommodate those with ADD/H.

To conclude, Youthreach services will have psychological services that may be able to identify young adults with ADD/H and be able to cater for their needs. The possible development of multiplexes to house community services as well as Youthreach services may provide the structure needed to provide services to young adults with ADD/H and assist the creation of a learning environment. The National Co-ordinator of Youthreach is amenable to creating a specific curriculum for adolescents and young adults with ADD/H. However, it is worth remembering that resources and time will always be limited. Demand will also strongly dictate the nature of Youthreach programmes. Currently there is a lot of work available to young men attending Youthreach centres on building sites etc. and there are more women attending Youthreach centres.

9.2 Summary of Objective Six

•Anecdotal evidence suggests that youths with ADD/H attend Youthreach services

•These youths are the ones most likely to drop-out

•There is a need for a national prevalence study in order to identify those with ADD/H

•The National Educational Psychological Service, Report of the Planning Group (1998) has advocated that emerging provision for Youthreach centres are compatible with and related to developments in the provision of a new National Educational Psychological Service

•It would be possible to design a specific curriculum for youths with ADD/H attending Youthreach centres.

10. Objective Seven

To investigate the situation through the Irish Medicines Board and practicing medical consultants regarding medications for persons with ADD/H. Secondly to determine which medicines are being widely used to treat ADD/H and its co-morbid conditions in other countries. If information regarding medical treatments for persons with ADD/H in Ireland is not available to investigate what conditions need to be fulfilled to enable these medications to become available in Ireland.

The medications prescribed for children with ADD/H in Ireland is discussed initially, including documentation received from NOVARTIS, the pharmaceutical company supplying the drug Ritalin to the Irish market. Information from the Central Pharmacy is also presented. The use of medication in the treatment of adult ADD/H is also briefly reviewed. This is followed by a review of medical treatments available in other countries, namely the US and the UK.

10.1 Use of drugs in Ireland for the treatment of ADD/H

Medications for children with ADD/H

As outlined in the earlier sections of this report children with ADD/H in Ireland have received medical treatment. In the evaluation of ADD/H services at Our Lady’s Hospital, Crumlin the majority of cases had received medical treatment for the disorder. Of the 22 respondents 14 parents indicated that their child had received medical treatment, the majority were taking Ritalin (N=11), two were prescribed Clonidine and another was prescribed Dexedrine. Parents were asked to indicate the effect of medication, the answers were as follows, (these comments are also presented in an earlier section describing the ADD/H service available at Our Lady’s Hospital, Crumlin)

•the behaviour problems had gone since the introduction of medication

•child was showing greater awareness on what was going on around them

•parents believed they had seen a dramatic positive change in the social and educational aspects of their life and at home

In the study investigating the needs of families of children with ADD/H the majority had received medical treatment also, that is, 18 children from the 22 respondents were prescribed medication as part of the treatment process for ADD/H. The type of medications prescribed are presented in the table below. This table was also presented in the section pertaining to Objective 5. The majority were prescribed the drug Ritalin. A total of 16 parents (89%) found the treatment beneficial. As outlined earlier the other parent was unsure as to the benefits of the drug and wanted her child’s oppositional-defiant behaviour treated also. The remaining parent felt the medication was of benefit for a short period only and wanted the drug Clonidine to be prescribed also.

Number and percentage of children taking different types of medication

As this point it is important to emphasis the drug treatment is only part of the overall treatment process which is multimodal in nature and should include, where appropriate, psychological intervention, education and medication. The documentation from NOVARTIS also indicated that "our product authorisation states clearly that the product should only be used as a part of a comprehensive treatment programme for ADHD when remedial measures alone prove insufficient. In addition, treatment must be under the supervision of a specialist in childhood behavioural disorder".

As can be seen from the above Ritalin or methylphenidate is the most popular medical treatment for ADD/H and as outlined by NOVARITS Ritalin "is indicated in the management of attention deficit hyperactivity disorder (ADHD) in children over the age of 6 years". NOVARTIS were contacted in an attempt to identify the amount of Ritalin supplied to the Central Pharmacy. NOVARTIS supplied the following information:

"Given the stimulant nature of the drug, it was agreed with the Department of Health that it should be supplied to the Irish market only via the Central Pharmacy in St. Mary’s Hospital, Phoenix Park, Dublin 20. Pharmacists can only source the product on behalf of prescribers/patients through direct contact with the Central Pharmacy, as it can not be purchased via conventional wholesaler channels. As such, we therefore directly supply the Central Pharmacy with the product based on their specific order requests. In 1998, we supplied approximately 10,000 units (1 unit = 1 pack of 30, 10mg tablets) to the Central Pharmacy".

NOVARTIS also state that "we do not promote the product in any way in Ireland, in the interest of safety we do however provide extensive product information to prescribers on request".

As there have been no prevalence studies of ADD/H in Ireland it is difficult to comprehend the amounts of Ritalin supplied to the Central Pharmacy. The medical director of NOVARTIS also stated that there has been an escalation in the supply of Ritalin over the last two-three years.

Central Pharmacy

The Central Pharmacy was also contacted about the supply of Ritalin to the Irish market. The Chief Pharmacist concurred with figures supplied by NOVARTIS. The Chief Pharmacist also concurred that there had been an increase in the supply of Ritalin in the last few years. The supply of Ritalin has “increased threefold in the last few years” according to the Chief Pharmacist.

New procedures were being put in place in the Central Pharmacy to monitor the supply of the drug, Ritalin. A database of demographic and individual dosage information will be maintained in order to ascertain a profile of the drug use. Currently the Central Pharmacy cannot monitor the use of the drug in a discriminatory fashion as there are no prescription details given only a written request for the drug and the appropriate fee.

Medication for adults with ADD/H

In the study investigating the needs of families of adults with ADD/H only one adult was currently taking medication which was Ritalin. This individual found the treatment to be very beneficial. The source of the prescription was the UK. Adults indicated that they would like the opportunity to try the drug. In this country a psychiatrist indicated that Tofranil was generally used as part of the treatment process for adults with ADD/H, however, it was less effective than Ritalin.

Ritalin is currently not licensed for use with Adults in Ireland. This is due to its addictive nature and the fact that it has the potential to be abused. The licensing of drugs in Ireland is "possibly the most restricted in Europe, if not the world" (NOVARTIS).

Contact was also made with the Irish Medicines Board regarding the availability of drugs used in the treatment in ADD/H. The Irish Medicines Board made reference to the three-monthly list of drugs available in Ireland. Any new drug licensing would require an application to the Irish Medicines Board for authorisation. The Irish Pharmaceutical Healthcare Association stated that drug companies generally decide on what product to market and this is proceeded by an application to the Irish Medicines Board for product authorisation including strict medical trials and safety and efficacy studies.

10.2 Use of drugs in the US for the treatment of ADD/H

Drug treatment for persons with ADD/H include stimulants and antidepressants. Contact with experts in the States indicated that there was a possibility that drugs had been somewhat over-prescribed in the US. There are approximately four million school-aged children with ADD/H on medication, this accounts for approximately six percent of all school-aged boys and two percent of all school-aged girls.

In the US it is estimated that currently 100,000 school-aged children are being treated with this combination of medications, despite little research evidence but considerable clinical evidence to support the use of this combination drug. Many clinicians treating children with Tourette syndrome and ADD/H have found this drug combination helpful in some cases.

Ritalin can be prescribed to adults with ADD/H in the US. According to one expert in adult ADD/H the most important part of treating adult ADD/H is to ensure that the disorder has been properly diagnosed ensuring that the adult had childhood symptoms of ADD/H and current functioning is also impaired. The diagnosis and treatment of adult ADD/H has not been fully researched. Research into the development of non-stimulant medication for the treatment of ADD/H is currently ongoing in the Child Development Center, University of Irving, California.

The success of the stimulant drug treatments have been established through controlled trials with thousands of patients in the US (e.g., Wilens & Biederman, 1992, Swanson et al., 1993). Stimulant medications reduce the symptoms of ADHD and HKD, about 80% of patients have clinically meaningful benefits and despite some common side-effects which can be reversed (decreased appetite, presence of tics) the medications are safe. The prescriptions of such medications are always on an initial trial basis as recommended by the US National Institute of Mental Health mulimodality treatment study of ADHD. If Ritalin does not produce a clinically meaningful response other stimulants are tried. If unsuccessful a trial of tricyclic antidepressants are recommended. The following drugs are also prescribed: clonidine carbamaxepine, amfebutamone, venlafaxine, and respiradone. "Combinations of pharmacological and psychosocial treatments (i.e., behavioural parent training and behavioural interventions for the classroom) for ADHD/HKD are generally recommended on the basis that multiple areas of impairment require multiple modalities of treatment. The best strategy is not yet known and large prospective studies of the efficacy of multimodality treatment of ADHD in North America and in Europe are still in progress (Swanson et al, 1998, p.431).

10.3 Use of drugs in the UK for the treatment of ADD/H

As in the US stimulants and antidepressants are used in the treatment of ADD/H, with Ritalin and Dexedrine being the most commonly used drugs. However the medication usage between different countries is striking. Correspondence between the Learning Assessment Centre in the UK and Irish ADD/H support groups revealed that the figure of 0.03% of UK schoolchildren on stimulant medication compares markedly with a similar one percent for Australia and two-three percent for North America. This under-medication in the UK is even more striking when one considers that up to one percent of UK schoolchildren have severe ADHD.

As in the US medication is always suggested as an initial trial and is carefully monitored. Medication is only continued if there are positive results with insignificant side effects. Dr Kewley of the Learning Assessment Centre went on to say the fine tuning of dosage and timing is crucial to effective management of the disorder. ADHD is such a complicated and variable condition that occasionally the use of a second medication is required.

A summary of the pharmaceutical treatments for ADD/H in Ireland and in the US and UK is presented in the next section

10.4 Summary of Objective Seven

Pharmaceutical treatment of ADD/H in Ireland

•The evaluation of ADD services available in Our Lady’s Hospital Crumlin revealed that the majority of those who took part in the study had medication prescribed for their child, and the majority found the medication very beneficial.

•The study conducted to investigate the needs of families of children with ADD/H also indicated that the majority had drug treatment prescribed for their child and the majority of parents found the treatment very beneficial.

•Ritalin was the most commonly prescribed drug for children with ADD/H in Ireland

•Parents also wanted a combination of drugs prescribed for their children to treat oppostional-defiant behaviour, namely Ritalin and Clonidine

•In 1998, NOVARTIS directly supplied the Central Pharmacy with approximately 10,000 units of Ritalin (1 unit = 1 pack of 30, 10mg tablets).

•The Chief Pharmacist concurred with the figures from NOVARTIS regarding the supplies of Ritalin to the Central Pharmacy

•There has been an increase in the amount of Ritalin prescribed in Ireland according to the Chief Pharmacist

•New procedures were being put in place in the Central Pharmacy to monitor the supply of the drug Ritalin.

•Only a few adults with ADD/H in Ireland are currently taking medication, namely Ritalin, mostly prescribed in the UK. Ritalin is not licensed for use with adults in Ireland, however some adults with ADD/H would like the opportunity to try the drug and by and large have to go to England for a prescription. The cost of which is approximately £1000.00 for the journey

Pharmaceutical treatment of ADD/H in the US and the UK

•Research studies in the US have found drug treatment for ADD/H to be very beneficial

•Drugs are always prescribed on a trial basis as recommended by the US National Institute of Mental Health multimodal treatment study of ADHD

•Ritalin and Dexedrine are the most commonly used drugs to treat ADD/H in the UK

•There is an under-medication of ADD/H in the UK according to a Consultant Paediatrician

•ADD/H is best treated by a combination of pharmaceutical and psychosocial interventions

11. Objective Eight, Objective Nine and Objective Ten

To identify the qualifications, experience and special training of staff in the area

To identify key personnel who train others in the field of ADD/H

To review GP knowledge of ADD/H as General Practices are often the sole supporters of families with persons with ADD/H

Information for this section was compiled from findings throughout the report. It is apparent from the report that there is no specific teacher training course in the area of ADD/H and in general, GPs are not very aware of the disorder. This is briefly outlined in the section below.

The review of the literature clearly specified that ADD/H affects 3-10% of school aged children so its imperative that teachers can cope with children with the disorder. Teachers also play a vital role in diagnosing a child with ADD so it is important that they are adequately trained. There needs to be provision made in the syllabus of teacher training colleges for training teachers about the disorder. Remedial teachers also need to be trained in recognising and coping with the disorder and also in helping children with ADD/H manage their own behaviour. In this study remedial and resource teachers had never heard of ADD/H in training.

In this study parents are requesting teachers who are educated about ADD/H. The study revealed that teachers are becoming more aware of the disorder due to the presence of educational psychologists in schools. However teachers who are aware of the disorder may not have the necessary skills to cope with a child in class.

Parents stated ‘schools are not equipped to deal with ADD/H’. Teachers are not being taught about ADD/H. There is a need for official recognition of this disorder within the Department of Education. Adults with ADD/H reported that the school system did not meet with their needs. Staff providing vocational educational services also need to be trained about the disorder as it was clear from the report that staff in Youthreach centres have not received any training about the disorder.

There is a need for widespread education for the medical profession to urgently increase awareness of the condition. There is a need for continual professional development. Health boards have a responsibility to train doctors and nurses in the area of ADD/H. In the study investigating the needs of parents of children with ADD/H only two children were attending their GP, who administers and monitors medication.

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Zametkin, A., Mordahl, T. E., Grois, M., King, A. C., Semple, W.E., Rumsey, J., Hamburger, S., and Cohen, R. M. (1990). Cerebral glucose metabolism in adults with hyperactivity of childhood onset. New England Journal of Medicine, 323 (2), 1361-1366.

Appendix A

Evaluation of the ADD/H Services

provided at Our Lady’s Hospital

The purpose of this questionnaire is to gather information about the ADD/H service provided in Our Lady’s Hospital. This evaluation will give a better understanding of the needs of ADD/H suffers and their families and will enable Our Lady’s Hospital to develop additional ADD/H services.

ABOUT YOUR CHILD

1.Within your family who has been diagnosed as having ADD/H?

Son □ Daughter □

2.What age is s/he? ________years

3.At what age was the problem first noticed? _________years

4.At what age was your child diagnosed? _________years

5.What level of schooling is the child at? (please □) Primary □ Secondary □

6.Who made the diagnosis?

___________________________________________________________________

___________________________________________________________________

7.Who referred you to the ADHD service at Our Lady’s Hospital?

___________________________________________________________________

___________________________________________________________________

8.Have you tried any behavioural strategies at home?(please □) Yes □ No □

9.What techniques have you found most helpful, please specify below

___________________________________________________________________

___________________________________________________________________

10.What has been the effect on your child’s education?

___________________________________________________________________

___________________________________________________________________

11.Does your child have additional needs beyond what this service provides which need to be met? (e.g., educational & childcare support) (please □)Yes □ No □

Any other comments_________________________________________________

__________________________________________________________________

ABOUT THE SERVICES RECEIVED

1. Please tick (□) from the list below the services you have received at Our Lady’s Hospital. Also rate your satisfaction with each of the services received

ABOUT MEDICATIONS - If your child is taking medication

1.What medication is your child taking? ___________________

2.Have you seen changes in your child’s behaviour as a result of medication? (quality of homework improved, calmed down, etc) (please □) Yes □ No □

Any other comments_________________________________________________

__________________________________________________________________

__________________________________________________________________

3.Do you think medications can help improve your child’s overall welfare? (e.g. relationship with peers, education) (please □) Yes □ No □

Any other comments_________________________________________________

__________________________________________________________________

__________________________________________________________________

4.Have there been any disadvantages to the medications? (please □) Yes □ No □

Any other comments________________________________________________

__________________________________________________________________

__________________________________________________________________

ABOUT YOURSELF

1.Do you think that the child’s parents are ADD/H? (please □) Yes □ No □

2.Is an adult diagnosis service available? (please □) Yes □ No □

3.What services would you like to see available for adults with ADD/H?

Please comment_____________________________________________________

__________________________________________________________________

_________________________________________________________________

ABOUT HOME LIFE

1.What was home like before ADD was recognised?

___________________________________________________________________

___________________________________________________________________

2.What was home like after ADD was recognised?

___________________________________________________________________

___________________________________________________________________

FAMILY LIFE BEFORE ADD/H SERVICE

Please answer the following questions about family life before you attended the service at Our Lady’s Hospital.

1.Has there been any loss of income to any member of the family due to your child’s disorder: (eg, Has anyone stopped working in order to stay at home, lost pay, lost a job?) Please tick one of the below

2.Before attending the ADHD service did your child’s behaviour disrupt activities: (eg, Child insisting on someone being with them, child becoming aggressive, not sleeping & not allowing others to sleep?) Please tick one of the below

3.Does your child’s ADHD interfere with normal recreational activities: Please tick one of the below

4.Did relatives & neighbours stop visiting the family or reduced the frequency of their visits because of the child’s behaviour or the stigma attached to their disorder? Please tick one of the below

5.Has the child’s disorder had any other effect on relationships within the family or between the family & neighbours or relatives (eg, separation of spouses, police intervention, embarrassment for family, sibling conflict) Please tick one of the below

6.Has there been any adverse effect on health of anyone in the family (e.g. someone losing weight or an existing illness made worse, become depressed or weepy) Please tick one of the below

CHANGES IN FAMILY LIFE DUE TO ADD/H SERVICE

Please answer the following questions about changes in family life after attending the service at Our Lady’s Hospital

1.Has there been any loss of income to any member of the family due to your child’s disorder: (eg, Has anyone stopped working in order to stay at home, lost pay, lost a job?) Please tick one of the below

2.After attending the ADHD service did child’s behaviour disrupt activities: (eg, Child insisting on someone being with them, child becoming aggressive, not sleeping & not allowing others to sleep? Please tick one of the below

3.Does your child’s ADHD interfere as much now with normal recreational activities: Please tick one of the below

4Did relatives & neighbours stop visiting the family or reduced the frequency of their visits because of the child’s behaviour or the stigma attached to their disorder? Please tick one of the below

5.Has the child’s disorder had any other effect on relationships within the family or between the family & neighbours or relatives (eg,. separation of spouses, police intervention, embarrassment for family?) Please tick one of the below

6.Has there been any adverse effect on health of anyone in the family (e.g. someone losing weight or an existing illness made worse, become depressed or weepy, become excessively irritable?) Please tick one of the below

7.Any other comments

___________________________________________________________________

___________________________________________________________________

___________________________________________________________________

Appendix B

Letter of Information & Consent

The National Research Agency Ltd. has been asked by Dr. Deirdre Killelea, National co-ordinator and professional advisor of INCADDS and Senator Mary Jackman to prepare a document for the Oireachtas Committee on Health and Children regarding ADD/H in Ireland. The primary aim of the study is to determine the extent of psychiatric, psychological, educational and vocational services throughout Ireland, both outpatient and residential for children and adults with ADD/H. The extent of expertise in the medical, psychological, educational and social services fields in Ireland will also be investigated. The study also aims to heighten awareness of ADD/H among government bodies in Ireland. Finally, the study also aims to determine if there is a need for an acknowledgement and understanding of the multi-disciplinary management of ADD/H including medication.

Data from interviews with parents, professionals and relevant others will be collected by the staff of the National Research Agency Ltd. and Professor Michael Fitzgerald, Child Psychiatrist.

Having read the above, please indicate on this form whether or not you agree to taking part in the study.¹ You will not be identifiable from the published results of the questionnaire and all information will be treated confidentially in accordance with the Data Protection Act (1988).

Agree □ Not Agree □ (please □ as appropriate)

Signed: _______________________ Phone no ____________ Date_________

Signed by researcher: ___________________________ Date_________

Verbal consent given over telephone: □ Date_________

Appendix C

ADD/H PARENTS’ QUESTIONNAIRE

1.Within your family who has been diagnosed as having ADD/H?

Son □ Daughter □

2.What age is s/he? _______________

3.Primary School □ Secondary school □

4.At what age was the problem first noticed? _______________

5.At what age did you present these problems to a professional? _______________

6.Did your child receive a diagnosis? Yes □ No □

7.If yes, who made the diagnosis?

______________________________________________________________

______________________________________________________________

______________________________________________________________

______________________________________________________________

______________________________________________________________

8.If yes, at what age was your child diagnosed? _______________

9.Does the school system effectively meet the needs of your child? Yes □ No □

Comment______________________________________________________

______________________________________________________________

______________________________________________________________

______________________________________________________________

10.Is your child currently receiving an additional service? Yes □ No □

11.Please describe the service your son/daughter is currently receiving?

______________________________________________________________

______________________________________________________________

______________________________________________________________

______________________________________________________________

______________________________________________________________

12.Are you satisfied with this current service? Yes □ No □

Comment______________________________________________________

______________________________________________________________

______________________________________________________________

______________________________________________________________

13.What professionals, if any, do you have contact with concerning your son/daughter?

______________________________________________________________

______________________________________________________________

______________________________________________________________

______________________________________________________________

______________________________________________________________

14.Is your child currently receiving medical treatment? Yes □ No □

15.If yes, do you find the treatment beneficial? Yes □ No □

Comment______________________________________________________

_____________________________________________________________

_____________________________________________________________

_____________________________________________________________

16.If no, would you like your child to receive drug treatment? Yes □ No □

Comment_____________________________________________________

_____________________________________________________________

_____________________________________________________________

_____________________________________________________________

17.What services would you like to see available for your son/daughter?

______________________________________________________________

______________________________________________________________

______________________________________________________________

______________________________________________________________

______________________________________________________________

18.In your opinion, who should be providing these services (i.e. Department of Health, Department of Education, Department of Children and Family)

______________________________________________________________

______________________________________________________________

______________________________________________________________

______________________________________________________________

______________________________________________________________

19.Do you attend a support group? Yes □ No □

Comment______________________________________________________

______________________________________________________________

______________________________________________________________

______________________________________________________________

______________________________________________________________

20.Does your son/daughter attend a support group? Yes □ No □

______________________________________________________________

______________________________________________________________

______________________________________________________________

______________________________________________________________

______________________________________________________________

21.How knowledgeable are the general public, school personnel, politicians, the medical profession of ADD/H?

______________________________________________________________

______________________________________________________________

______________________________________________________________

______________________________________________________________

______________________________________________________________

22.In your opinion how could this knowledge be increased?

______________________________________________________________

______________________________________________________________

______________________________________________________________

23.Does the sufferer of ADD/H impact on day to day family life? Yes □ No □

Comment______________________________________________________

______________________________________________________________

______________________________________________________________

______________________________________________________________

______________________________________________________________

24.Any other comments you would like to make for the Oireachtas report

______________________________________________________________

______________________________________________________________

______________________________________________________________

______________________________________________________________

______________________________________________________________

Appendix D

ADD/H ADULTS QUESTIONNAIRE

1.Within your family who has been diagnosed as having ADD/H?

2.Age range? 18-25 □ 26-35 □ 36-45 □ 46-55 □ 56+ □

3.At what age was the problem first noticed? _______________

4.At what age did you present these problems to a professional? _______________

5.Did you receive a diagnosis? Yes □ No □

6.If yes, who made the diagnosis?

______________________________________________________________

______________________________________________________________

______________________________________________________________

______________________________________________________________

______________________________________________________________

7.If yes, when were you diagnosed? _______________

8.Did the school system effectively meet your needs? Yes □ No □

Comment______________________________________________________

______________________________________________________________

______________________________________________________________

______________________________________________________________

9.What services are available for adults with ADD/H?

______________________________________________________________

______________________________________________________________

______________________________________________________________

______________________________________________________________

______________________________________________________________

10.Are you currently receiving an additional service? Yes □ No □

______________________________________________________________

______________________________________________________________

______________________________________________________________

11.Please describe the service you are currently receiving?

______________________________________________________________

______________________________________________________________

______________________________________________________________

______________________________________________________________

______________________________________________________________

12.Are you satisfied with this current service? Yes □ No □

Comment______________________________________________________

______________________________________________________________

______________________________________________________________

______________________________________________________________

13.What professionals, if any, do you have contact with?

______________________________________________________________

______________________________________________________________

______________________________________________________________

______________________________________________________________

______________________________________________________________

14.Are you currently receiving medical treatment? Yes □ No □

15.If yes, do you find the treatment beneficial? Yes □ No □

Comment______________________________________________________

_____________________________________________________________

_____________________________________________________________

_____________________________________________________________

16.If no, would you like to receive drug treatment? Yes □ No □

Comment_____________________________________________________

_____________________________________________________________

_____________________________________________________________

_____________________________________________________________

17.What services would you like to see available for Adult with ADD/H?

______________________________________________________________

______________________________________________________________

______________________________________________________________

______________________________________________________________

______________________________________________________________

18.In your opinion, who should be providing these services (i.e. Department of Health, Department of Education, Department of Children and Family)

______________________________________________________________

______________________________________________________________

______________________________________________________________

______________________________________________________________

______________________________________________________________

19.Do you attend a support group? Yes □ No □

Comment______________________________________________________

______________________________________________________________

______________________________________________________________

______________________________________________________________

______________________________________________________________

20.How knowledgeable are the general public, school personnel, politicians, the medical profession of ADD/H?

______________________________________________________________

______________________________________________________________

______________________________________________________________

______________________________________________________________

______________________________________________________________

21.In your opinion how could this knowledge be increased?

______________________________________________________________

______________________________________________________________

______________________________________________________________

22.Does the sufferer of ADD/H impact on day to day family life? Yes □ No □

Comment______________________________________________________

______________________________________________________________

______________________________________________________________

______________________________________________________________

______________________________________________________________

23.Any other comments you would like to make for the Oireachtas report

______________________________________________________________

______________________________________________________________

______________________________________________________________

______________________________________________________________

______________________________________________________________

Joint Committee on Health and Children - Report on Attention Deficit Disorder in Ireland

1.At its meeting on 4 November 1999, the Joint Committee on Health and Children considered an item of correspondence from the Attention Deficit Disorder Mid West Support Group (copy attached), concerning the Committees Report on Attention Deficit Disorder which was laid before the Houses on 29 April 1999.

2.The Joint Committee decided to formally request that the issues raised in the Report be the subject of a debate in Seanad Eireann., and that this request should be included in an addendum to the original report.

__________________

Batt O’Keeffe T.D.

Chairman

17 November 1999

¹ Reprinted from DSM – IV, American Psychiatric Association, pages 83-84.

² This review is just concerned with the course content for teachers in how to deal with children with special educational needs, namely ADD/H, other areas covered in teacher-training courses are not discussed.

³ For parents, if you do not agree to taking part in the study, it will not effect the service you or your son/daughter receives in the future.