This article describes a nurse-led innovation to improve assessment, diagnosis and treatment of attention-deficit hyperactivity disorder
Assessment and management of attention-deficit hyperactivity disorder are complex and nationally inconsistent. To improve care for the children and young people it serves, a mental health service developed a nurse-led initiative that improved multidisciplinary working, including shared care with general practice. The project increased the team’s capacity and reduced the waiting list for patients. By improving communication with GPs, it also allowed patients’ repeat prescriptions to be managed in primary care. Overall, the new model has also made an annual saving for the trust in prescription costs.
Citation: Bullock R, Ford S (2022) A nurse-led model of care for attention-deficit hyperactivity disorder. Nursing Times [online]; 118: 10.
Authors: Rachel Bullock is trainee advanced clinical practitioner and independent nurse prescriber; Sue Ford is independent nurse prescriber; both at North Staffordshire Combined Healthcare NHS Trust.
- This article has been double-blind peer reviewed
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Attention-deficit hyperactivity disorder (ADHD) is a common neurodevelopmental disorder, with a recent meta-analysis estimating the worldwide prevalence to be approximately 5% (Dalrymple et al, 2020). Onset usually occurs in childhood or in adolescence (World Health Organization, 2004).
Diagnosis and management
The National Institute for Health and Care Excellence (NICE) (2019) defines ADHD under three core symptoms of hyperactivity, impulsivity and inattention, but it can also include complexity around emotional regulation difficulties and compromised cognitive functioning. Assessment is usually subjective, which often leads to differences in opinion. Due to the complex and pervasive nature of ADHD presentations, NICE (2019) recommends diagnosis is carried out by a paediatrician, specialist psychiatrist or appropriately qualified health professional with training and expertise in diagnosing ADHD.
Commissioning arrangements for assessment and treatment are spread across both mental health and paediatric services, which adds to the variability of assessment and outcomes (Goodman et al, 2000). It is, therefore, important that advanced nurses explore innovations in assessment tools that may maximise diagnostic accuracy (Youngstrom et al, 2014) and equity across service provision (Shaw et al, 2012). This supports NICE’s (2019) recommendations, which advise that people with ADHD would benefit from improved organisation of care. This includes better integration of child and adolescent mental health services (CAMHS), child health services and adult mental health services. NICE (2019), therefore, recommends that these services form multidisciplinary specialist ADHD teams and/or clinics for children and separate teams and/or clinics for adults, which should:
- Provide diagnostic, treatment and consultation services for people with ADHD who have complex needs, or for whom general psychiatric services are in doubt about diagnosis or management;
- Put in place systems of communication and protocols for information sharing between paediatric, child and adolescent, forensic and adult mental health services, including arrangements for transition between child and adult services;
- Produce local protocols for shared-care arrangements with primary care providers, and ensure clear lines of communication between primary and secondary care;
- Ensure age-appropriate psychological services are available for children, young people and adults with ADHD, and for parents or carers.
The size and time commitment of these teams should depend on local circumstances, such as trust size, population covered and the estimated referral rate for people with ADHD (NICE, 2019).
To address national inconsistencies and long waiting lists, a programme called Focus ADHD is working with NHS trusts across England to improve assessment for children and young people (CYP) (The AHSN Network, nd); this includes supporting quality-improvement efforts in this important area of neurodevelopmental nursing. The NHS Long Term Plan (NHS, 2019) further supports collaborative working arrangements for CYP.
Background to the project
Across the UK, nurse prescribers hold large caseloads of people with ADHD who need ongoing treatment, review and monitoring. Alongside this, at North Staffordshire Combined Healthcare NHS Trust we offer nurse leadership and diagnostic expertise to the multidisciplinary team (MDT) on neurodevelopmental assessment and formulation. This clinical leadership ensures we have an equitable assessment offer across our three teams and can provide timely care under strong clinical governance within an evidence-based framework.
We began the project five years ago, when there were very long waiting lists for assessment and diagnosis of ADHD in our trust: the referral-to-outcome process took 18-24 months. CYP were often under the care of CAMHS and waiting for long periods in between assessments, and families were frequently unaware of their position in the process. This situation is not unique: mounting backlogs, coupled with clinicians holding large caseloads of patients who need ongoing support and treatment, contribute to long waiting times for CYP accessing mental health services (Edbrooke-Childs and Deighton, 2020).
Our own service had no designated lead for ADHD. The psychiatry team held a large caseload of CYP who were being treated for ADHD, and they remained within the CAMHS service; this meant that a child diagnosed at six years old remained under the care of CAMHS until 18 years of age, despite ADHD being a neurodevelopmental disorder, rather than a mental health need. This was having a negative impact on CAMHS staff availability for new presentations, as well as on risk management and urgent review of existing patients. Additionally, there was a large cohort of stable patients who could be managed by nurse prescribers but were being managed by consultants; we had high prescribing costs and team availability was being taken up with prescription queries or requests.
Many young people, and some children, did not want to be seen in CAMHS, which became another barrier to support. The service had a high retention rate and a low discharge rate and, in general, the relationship between CAMHS and primary care was limited. Both locally and nationally, ADHD forms up to 50% of CAMHS referrals and caseloads (Janssens et al, 2020); from talking to health professionals from ADHD services across the country, we have observed that this level of referrals often overwhelms teams.
In September 2017, we implemented a fully functioning, nurse-led MDT model for ADHD, in line with NICE (2019) guidance and with the additional element of the Qb test. This is a diagnostic screening tool that provides objective information to aid ADHD assessment; it uses age- and gender-normative data to assess all three core symptoms. The Qb test is an essential part of the ADHD pathway, and the results are used in conjunction with other ADHD assessment tools to aid clinical judgement.
Three nurse prescribers were recruited into our service, who took on the role of ADHD pathway leads. An ADHD tracker for each team was implemented; this aimed to map a child’s timely journey through the ADHD pathway. We began holding a monthly ADHD MDT meeting in each CAMHS team, which ensured a comprehensive and timely assessment process for each patient, based on their presentation and concerns. The MDT included:
- Nursing leads (independent prescribers);
- Play specialists;
- Parenting specialists;
- Healthcare support workers;
A full review of the psychiatry ADHD caseload was completed, and this identified a high proportion of stable CYP. It also highlighted some concerns about possible misdiagnosis; following this, the nurse consultant conducted an audit, which resulted in the withdrawal of ADHD diagnosis and medication in approximately 10 cases.
For all patients who had been diagnosed and were stable, an appropriate essential shared-care agreement (ESCA) was completed and sent to their GP. This improved communication between nurses and GP surgeries, and supported the transition of prescribing practice.
Placing MDT decision making at the core of our work created equitable assessment, diagnosis and treatment across all our teams. There is a long-standing consensus that ADHD medication is effective, but that there needs to be more focus on:
- Alternative and additional treatment options;
- Supporting CYP to be empowered to direct their care through shared decision making (Pelham and Fabiano, 2008).
NICE’s (2019) guidance further supports the need for a range of treatment options, including psychological components.
All the nurses leading on the ADHD pathway in our service are independent prescribers and manage treatment via direct prescribing or review and monitoring of the ESCA in collaboration with primary care. The prescribing element of the role gives us the autonomy to question previous practice. It is not essential, however, for nurses to hold a prescribing qualification to become involved in quality improvement or pathway redesign. Our work is in line with Focus ADHD’s emphasis on improving pathways to ensure sustainability in health services (The AHSN Network, nd).
The impact of the project CAMHS’ capacity
This nurse-led initiative has reduced CAMHS’ caseload by reducing the diagnostic rate and increasing the rate of timely discharge. We achieved this through use of the Qb test, which:
- Improves decision-making competence;
- Reduces the time taken to reach a diagnostic decision;
- Facilitates holistic understanding of a child’s needs (Hollis et al, 2018).
By increasing CAMHS’ capacity, we are better able to address local need. This has enabled us to focus on holistic, comprehensive assessment in a timely way. The referral-to-outcome process for ADHD is now completed in 0-12 weeks and we have no waiting list.
We have worked hard to adopt a strength-based, inclusive approach that promotes neurodiversity (rather than fostering dependency on CAMHS) by empowering CYP and their families to feel equipped to manage their symptoms and embrace their talents. As nurse prescribers, we now have direct access to clinical systems in primary care, removing duplication and giving GPs direct access to documentation and physical observations. We can also review physical health comorbidities, which ensures safe prescribing.
The biggest challenge we faced was the resistance to change from some areas of the service. As advanced nurses, we managed these challenges through effective change-management strategies and quality-improvement processes. We have developed the conviction to question practice and nurture a culture of progress and nurse-led innovation.
The project has created a collaborative relationship and consistent approach between CAMHS and GPs in managing ADHD in CYP. Across our ADHD teams, up to 90% of patients now receive a shared-care approach, which means their ongoing prescribing has moved to primary care. These patients and their families can now access repeat prescriptions at their local GP practice, reducing their need to travel to secondary mental health services; Box 1 shows the impact of this. In addition, this has created further capacity in our psychiatry team, because nurse prescribers manage most ADHD treatment.
Box 1. The impact of receiving ADHD care at a GP practice
“I like coming to the surgery, as no-one knows why I am here.”
“It’s a lot closer to home when I see [the GP] here.”
“I don’t have to miss a day of school now.”
“The practice [is] extremely pleased with the way the CAMHS ADHD team is currently running. GPs have the opportunity to discuss the patients directly [with the nurse prescriber] when [they] are in the practice and, equally, [the nurse prescriber] can liaise with the GP about other aspects of the patients’ care when necessary. Making direct entries into the patient record in the practice also aids the GPs and other practice clinicians when seeing the patients regarding their health.”
Dr Webb, GP
Names have been changed. ADHD = attention-deficit hyperactivity disorder; CAMHS = child and adolescent mental health services.
The project has also improved ongoing ADHD management in primary care. We now provide a single point of access for our GP partners, providing regular access to specialist advice, training and support. Our GP partners requested support and guidance to ensure safe, effective and therapeutic prescribing under the ESCA, and nurse prescribers provided this. Nurse prescribers have also been instrumental in introducing non-pharmacological treatment options for patients with ADHD and deprescribing, when appropriate, to ensure children are on appropriate medication as they grow and develop.
Improving the communication between providers has enabled a more-fluid transition for patients who need a step-up or step-down of service provision; this is in line with the NHS’s (2019) Long Term Plan and integrated care systems (NHS Confederation, 2022).
Overall, this model has saved the trust £202,000 a year in prescription costs alone; this equates to a mean average cost of £675.62 per individual, although there is variation in the actual cost per patient due to the cost of each drug, dose range and prescription length. These substantial savings have been reinvested into the pathway to strengthen the assessment process with the introduction of the Qb test.
There is a need to build a consistent and collaborative pathway that best supports the ongoing management of CYP who require ADHD assessment, diagnosis and treatment. Focus ADHD is supporting local areas to explore innovative ways to improve assessment; however, all care providers must consider how to address the inconsistencies and considerable waiting lists, while ensuring clinical best practice and quality.
In our team, CAMHS staff were motivated to improve the quality of the service for CYP with neurodevelopmental needs and their families. Introducing nurse prescribers allowed us to progress the service and challenge existing practices.
Nurse prescribers are ideally placed to offer the knowledge and expertise to drive important change. As independent prescribers, we can offer a consistent patient journey from holistic assessment through to treatment and positive outcomes. Neurodevelopmental nursing is an exciting and growing area of practice, and nurses can act as leaders to support CYP.
- Hyperactivity, impulsivity and inattention are the core symptoms of attention-deficit hyperactivity disorder
- National guidelines recommend integrated, organised care between services
- A nurse-led model increased multidisciplinary working in an attention-deficit hyperactivity disorder service
- The project reduced the service’s waiting list and prescription costs
- Patients value receiving care locally from their GP, including the management of repeat prescriptions
The AHSN Network (nd) Focus ADHD. ahsnnetwork.com, (accessed 22 August 2022).
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