An overview of my role for Children and their Families living with Attention Deficit Hyperactivity Disorder (ADHD) attending Ryegate Children’s Centre, Sheffield.

 

Attention Deficit Hyperactivity Disorder

Attention Deficit Hyperactivity Disorder (ADHD) is an internationally recognized medical condition and despite several name changes over the past hundred years the problems now defined as ADHD are not new. The cluster of problems defining ADHD constitutes one of the most complex disorders of childhood.

The diagnostic criteria can be found in the two international classifications of mental disorders, ICD-1O and DSM-IV. Children with ADHD generally have many of the following characteristics. They are EXCESSIVELY inattentive, impulsive and/or hyperactive, they have problems following rules, listening to others and concentrating on their schoolwork, they are less influenced by consequences than their peers, they tend to be disorganized, disruptive, show an increase in risk taking behavior and require a lot of extra supervision. Children living with ADHD typically experience difficulty with home, school, and community behavior and with emotional adjustment. They tend to be reprimanded more frequently and experience more failure and rejection than their peers, leading to a lowered self-esteem. ADHD is often found together with other conditions, for example - Asperger’s syndrome, excessive oppositionality and conduct disorder, dyslexia, learning difficulties, co-ordination and speech and language difficulties.

ADHD is a disorder that is managed, not cured. Management must consist of a partnership between the child, family, school and medical team.  With this is in mind a part time post was created at Ryegate Children’s Centre.  

The new nursing service at Ryegate

My name is Michelle Richardson and I am a Registered Sick Children’s Nurse.  Prior to commencement in post at Ryegate in September 1999 I worked at the Sheffield Children’s Hospital for over 10 years on a variety of different wards and departments, and completed a diploma in acute, continuing and critical care of children. I also have a very special interest and personal experience of living with ADHD.

Initially the new post at Ryegate was a general staff nurse post with a view to having an interest in children and their families living with ADHD.  However, to meet the needs of the service this has now developed into purely an ADHD Liaison Nurse Post.  Therefore from November 2000 I will be working 20 hours a week as the ADHD Liaison Nurse and 15hrs as the study co-coordinator for a research project which Ryegate is currently involved in regarding ADHD.  I work as an independent practitioner within a multi-disciplinary team for children and their families living with ADHD and I work very closely with Dr Val Harpin, Consultant Community Paediatrician who has a very special interest in children with ADHD.

The aim of the service is to provide a consistent approach to the management of children with ADHD and to improve their quality of life through the provision of education, information and where appropriate medication.

It is well known, that much of the information given to children and their parents, especially when the condition is first diagnosed is not absorbed (Collins 1994). This highlights the importance of follow-up and the need for constant reinforcement by health care professionals. Given the nature of the condition and the chaotic lives that many of the families experience this is of great relevance to the families involved. Indeed sometimes a parent may also have ADHD.

Myth, misinformation and ignorance about ADHD also need to be overcome.

I am responsible for establishing a nurse-led review clinic, which is proving an extremely effective way of sharing information and monitoring progress.  This is just one example of the nurse’s expanded role and demonstrates how medical and nursing roles can overlap effectively to provide appropriate care for children living with ADHD.  As I am present in both the Consultant led and nurse-led clinics, relationships are built up with the child and family, increasing the likelihood that both the child and family will discuss their wishes and concerns.

Children have rights, which have been publicised by the UN Convention on the Rights of the Child, the Children’s Act 1989 and the Patient’s Charter and these are considered in every day practice. Children are involved in the management of their condition and given honest information appropriate to their age and stage of development, what the child has to say is listened to and I act as their advocate.

It is strongly believed that the multi-modal approach to managing those living with ADHD is the most likely to succeed. Along with parents, teachers have a responsibility for the day-to-day management of children with ADHD. School provides the environment for a large proportion of the child’s waking day, therefore it is essential that schools have an increased knowledge of ADHD — it is only by understanding the nature of ADHD that one may start to anticipate the problems and behavior of children living with ADHD. Children with ADHD can be frustrating to teach — what works today may not work tomorrow therefore teachers need support and factual advice on educating children with ADHD. The medical profession also requires unprejudiced information regarding the day-to-day behaviour and academic achievement of children in their care. This information from school is crucial in reaching a diagnosis of ADHD.

Some children with ADHD need support in school over and above that the school can provide, they have a Statement of Educational Need (Education Act 1993). This is a complex process and I can help support families (or at least refer them to the correct services) and provide health input, I also attend schools to carry out observations of children, write reports and attend review meetings to feed the medical advice to the multi-disciplinary team. As commented by Kewley (1999) ‘teachers and medical professionals should work together without territorial boundaries’.

There is a lot of ignorance about the role of medication in the management of ADHD. In conjunction with other strategies, drugs such as Methylphenidate (known as Ritalin) can have a marked effect on the lives of these children. The purpose of medication is to treat the core symptoms of ADHD and can be highly effective in improving concentration, impulsiveness and lessening hyperactivity. The use of medication, the potential benefits and potential side effects should be discussed with the child and family by the doctor, this is often followed up by a discussion with myself. It is also vital that school are involved in the use of medication, fine tuning the timing and dosage of medication is critical to effective management and liaison between the professionals and the family involved is another important role that I undertake. A patient group directive enabling myself to promptly titrate Methylphenidate has also been established.

The prescribing of Methylphenidate (Ritalin) by General Practitioners can be problematic and I have established links with all General Practitioners throughout the city and I am actively seeking their views and concerns regarding prescribing and on-going medical management. In order to improve the service for the families I have established a telephone answering service enabling families to acquire repeat prescriptions of Ritalin effectively. Outside funding was obtained via a double glazing company to purchase the answering machine and initial response to the new service is excellent. 

Closer links with the school nursing service have been established and I hope I can develop this further.

Resistance to going to bed and fewer total hours of sleep are important sleep disturbances in children with ADHD. Sleep deprivation may worsen the clinical presentation of ADHD symptoms and sleep problems may contribute to disruptive behaviors that intensify family discord for children with ADHD (Barkley 1990). Sleep deprivation is a great issue for many families attending Ryegate and to help monitor this situation I have devised a workable sleep diary and together with Dr Harpin we are exploring the use of ‘Melatonin’ therapy to assist the children with getting to sleep. This is still in the very early stages although early indications are very positive.

Research shows that behavioral support programmes are an important part of the management package for children with ADHD. Sheffield currently has the ‘come-on-everybody project’ funded by the ‘sure-start’ programme. This is a behavioral management programme, based on the Webster-Stratton approach for both parents and children. I have observed the programme, and attended the Webster-Stratton training course and I am currently actively involved in discussions with the ‘come-on-everybody’ project, psychology and social work teams at Ryegate with a view to jointly bringing a similar programme to the Ryegate Centre.

I am also actively discussing my role and possible ways of working more closely with the Child and Family Therapy teams across the city. The issue of how other professionals and groups, both locally and nationally are addressing the same issues and working together is of priority.

I tend to be first line of contact for people accessing information regarding ADHD at Ryegate. As discussed, this can be parents, children, teachers, health visitors, social workers, general practitioners, school nurses etc. This involves a lot of telephone liaison (workload monitoring over a month showed evidence of over two hundred and forty phone calls for myself alone). I have also organized and overseen visits for students from nursing, teaching and psychology departments at the university. Clinical supervision from a qualified member of staff has also been requested.

Close links with the local support groups have been established and I am welcome to attend these on a regular basis, which I try and do.

To help manage and monitor my workload I am establishing a database. This currently has over two hundred children listed who attend Ryegate for Attention Deficit type problems. Issues still to be addressed include exploring the possibility of a voluntary register for children with ADHD to positively assist with the identification and planning of service provision. I have now been in post for twelve months and in order to maintain and provide evidence based practice I intend to carry out an audit of the service provided in the near future.  I am also in contact and contributing information to the ADHD National Alliance that is in the process of being created (funded by the Department of Health), and I am continuing to network in the hope of making contact with other nurses throughout the United Kingdom working as ADHD Liaison Nurse’s.