Written by Dr Val Harpin and Dr Caroline Bleakley; Sheffield Children’s NHS Foundation Trust, Sheffield, United Kingdom
Services for the assessment and treatment of ADHD in children and young people have developed in a piecemeal fashion across the UK. As a result they vary greatly in composition and in the services they offer. The variation in services throughout the UK is highlighted by the NICE Guidelines (2018) which emphasise that children would benefit from an improved organisation of care and better integration of services involving different professional groups.1 Comorbid disorders are often associated with individuals with ADHD: in children and adolescents, these may include disorders of mood, conduct, learning, motor control, language and communication, and anxiety disorders.1 In the course of their lives they may need many different kinds of support to help them to succeed. To meet the needs of children and young people with ADHD and their families, a team with access to all the necessary competencies is needed. This article describes how the Ryegate Children’s Centre, in Sheffield, UK, endeavours to meet these needs.
Sheffield: the context
Sheffield is a city in Yorkshire, Northern England with a population of approximately 551,800, including approximately 100,000 school-age children. In Sheffield, children and young people are seen by Child and Adolescent Mental Health Services (CAMHS) and Specialist Paediatrics for the assessment and management of ADHD and its comorbid conditions.
History of the Ryegate Children’s Centre (Sheffield, UK)
When referrals for assessment of possible ADHD began to see an increase in the early 1990s, a joint clinic was set up by a Consultant Paediatrician and a Consultant Child Psychiatrist. Unfortunately, this joint clinic could not continue and, since then, separate services have developed. Below we discuss the ADHD Service in the Child Development Centre (CDC: paediatrics).
The core ADHD Service team of the CDC and the wider relationships are shown in Figure 1. Therapy services are also available within the centre or delivered in school.
Figure 1: The team and wider relationships
Current care pathway
Most referrals come via general practitioners (GPs), but we also take referrals from community or hospital paediatricians or from CAMHS when comorbid difficulties present in children/young people with ADHD suggest this is appropriate. Some referrals are prompted by school concerns, some by family concerns and some by both.
- If the referral seems appropriate for our team, an initial appointment is offered within 11 weeks.
At the first appointment, a paediatrician will take a full history including medical, developmental, behavioural, family and educational details. The specific difficulties faced by the child/young person and their family are discussed, along with how they hope things will change.
Examination is undertaken to consider underlying diagnoses that may cause or contribute to the symptoms (Figure 2).
Figure 2: Physical examination in ADHD assessment: key elements
During the appointment the child/young person is observed and they are included in the discussion. The clinician will discuss the diagnostic possibilities with the family, give written information about the proposed diagnosis, and arrange for parent and teacher questionnaires to be filled in. The team currently use the Swanson Nolan and Pelham IV (SNAP-IV) Rating Scale or Conners’ ADHD Rating Scale-Short Form. Other questionnaires may be added to investigate possible comorbidities further.
An observation in school is then arranged by one of our Specialist Nurses. This is a structured observation comparing the child with possible ADHD with a control child, as well as with the class in general. The opportunity is also taken to gain further information from the teacher regarding the behaviour of the child with possible ADHD and to discuss potential management strategies.
A review appointment is arranged when all the information has been collected. This review may confirm an ADHD diagnosis. If it is clear that the diagnosis is not ADHD, the child/young person and family may be referred to other support. If the diagnosis remains uncertain, further review and monitoring is arranged after discussing all the information. A QbTest (Qbtech Ltd., London, UK) may be helpful in unravelling a complex situation. This computer-based test assesses activity, concentration and impulsivity.
It will also be necessary to consider whether or not comorbid/coexisting difficulties are present and affecting the child’s behaviour. Given that individuals with ADHD may have one or more comorbidities,1 this is vital to both diagnosis and management plans. Ability to screen for developmental and mental health difficulties within a team is therefore essential. If a diagnosis of ADHD is confirmed at some point, firstly verbal and then written information is given again or reviewed. The clinician will also explain possible treatment pathways and the advantages and disadvantages of these for that individual patient.
In Sheffield we refer families to the Family Action ADHD Project. A worker from this project will arrange a home visit for the family and again discuss options.
All carers are offered a place in a Managing ADHD Group. This is run in various venues around the city, sometimes in the day and sometimes in the evening, to try to meet families’ needs. It consists of group sessions covering behaviour strategies, working with education and how ADHD medications work. The programme is facilitated by members of our team, CAMHS and project workers. Parents develop strategies to help them support their child and feel more able to manage any difficulties.
If additional individual support is needed, families can be referred to Clinical Psychology. These team members may also be involved in assessing for possible comorbid difficulties, e.g. autism spectrum disorder, low mood or anxiety.
The family and team members will discuss the diagnosis with the child/young person’s school and consider strategies for the educational setting.
Medication, if deemed appropriate for the child/young person, forms part of the comprehensive treatment programme. The possible stimulant or non-stimulant medications are discussed and if the impairment in the child/young person is agreed to be having a sufficient impact, a plan is made to begin titration of medication. Speed of titration depends upon the medication used. Initial monitoring is by structured phone contact with ADHD Specialist Nurses. These nurses can titrate medication using agreed algorithms depending on response and side effects.
Review of response to treatment
The next face-to-face appointment is scheduled around 6 weeks later. The child is weighed and their height measured, as well as their pulse and blood pressure recorded. All are compared with normal values for age, sex and size and with baseline. Core symptoms are assessed using SNAP-IV. Feedback from the child/young person, the family and the school are compared, any side effects discussed and any necessary further adjustment to medication planned.
Ongoing review frequency depends upon response.
Once a child/young person has been stable on medication for 3 months, GP practices in Sheffield will take over prescribing and some basic monitoring as long as the specialist team remains involved in the review.
The Ryegate team has developed specific clinics to meet the needs of young people from the age of 13
The young person is encouraged to attend alone initially and they lead the consultation. Sometimes girlfriends/boyfriends attend and parents/carers are involved in each session. The clinics run at quieter times in our centre, with consistency of team members to develop stronger relationships and hopefully to make that young person more confident in discussing relevant personal issues. Goals relevant to the young person are prioritised and monitored. There is a strong emphasis on trying to improve compliance by making sure the young person has a good understanding of their ADHD, and what it means by using positive everyday language and examples. Positive attributes in the young person’s profile are discussed and emphasised and they are involved in all treatment decisions.
Life skills are discussed and information shared about driving, sexual health, substance misuse, and safe use of social media. It is hoped that the team can support young people during this complex time in their development; in particular, increasing their understanding of ADHD and facilitating greater adherence to treatment and more positive lifestyle choices.
Even if the child/young person is stable on treatment, they are seen every 6 months to monitor progress. Core symptoms, goals and quality of life are discussed. At each visit weight, height, blood pressure and pulse rate are checked by trained staff and plotted on standardised charts. Blood pressure is checked against percentiles for age, sex and height. If needed, children/young people can be referred to a dietitian or a nephrologist. School progress is monitored, sometimes by questionnaires, and any issues at home considered.
Some clinics are held in special schools for pupils with behavioural difficulties. This helps reduce non-attendance by vulnerable families, ensures valuable information from school is available and helps the team to support school staff.
The role of the Specialist ADHD Nurse
The team in Sheffield has included specialist nursing since 1999. These nurses have had a background in paediatric nursing, school nursing or health visiting. One has been a nurse prescriber.
The nurses have developed the standardised school observation which is pivotal in our diagnostic process: an experienced professional observing a child with suspected/known ADHD in a setting which requires concentration and cooperation and where other children of the same age are present provides extremely high quality information. We are in the process of formally validating the observation scheme. This school visit also gives an opportunity for liaison with the teacher and other school staff. In addition, the nursing team are facilitators in the Managing ADHD Group (the first version of which was designed by our first ADHD nurse).
The Specialist ADHD Nurse role is key to our team functioning. They run their own follow-up clinics and join school and young people’s clinics. They provide first point of contact and advice via the telephone to families. As in many fields of health care, the Specialist Nurse role has proved to be effective, popular with patients and families, and highly cost-effective.
Transition to adult services
Preparation for adult life with ADHD begins in the adolescent clinic. Transition to adult services takes place, if needed, somewhere after the young person’s sixteenth birthday and before the age of 19 years.
Some young people no longer have significant ADHD symptoms and do not need medication or other specialist support. They can be discharged but are given information on how to get further support as adults if their ADHD causes impairment again in the future.
Young people who are stable on medication may be managed by GPs with access to advice from specialist services. Young people with mental health issues will be referred to Adult Mental Health Services and those who also have learning disability may benefit from accessing Adult Learning Disability Services.
An increasing referral rate, as families and schools are increasingly aware of the diagnosis of ADHD and the possibilities for successful treatment, is resulting in an increasing caseload of patients within the service.
- This places added stress on staff and reduces the time available to each family. The specialist nursing team provides rapid access to information and support for families in a highly cost-effective way. However, the team needs more resources and staff in order to offer optimal support to complex and very vulnerable individuals.
We are also aware that there are gaps within our service.
- The needs of preschool children with ADHD symptoms are difficult to meet.
- Transition to adult services remains a challenge as numbers increase.
The needs of families with a child/young person with ADHD are various and long-standing.
- All professionals working with such families must continue to develop services as much as they can and advocate support for the future.
Our team is also committed to research and teaching. Current research involves establishing a citywide cohort to monitor long-term outcomes. Members of the team provide multidisciplinary teaching at all levels for health and education professionals.
Disclaimer: The views expressed here are the views of the physician and based upon his own personal clinical experience. They are not those of Takeda.
- NICE guideline 2018. Attention deficit hyperactivity disorder: diagnosis and management. Available at: https://www.nice.org.uk/guidance/ng87. Accessed February 2019.