Scope

  • Highland HSCP 
  • Primary and Secondary Care

Introduction

Highland is a NAIT neurodevelopmental pathways pilot site. This means that NHS Highland has received funding to look at how we might deliver assessment, diagnosis and treatment services for adults who present with likely ADHD.

A local pathway has been developed and is now in the early stages of implementation. The pathway is accessed through referrals to catchment Community Mental Health Teams through usual processes. It is intended that implementation will progress through a phased approach.

However, ADHD is a condition that has a number of key differences from other conditions that are referred to our teams. As such, ADHD has specific referral criteria and a threshold for referral which is both specific to the condition and the phase of the local implementation plan.

The increase in adult patient consulting for and requesting assessment of ADHD is multi-factorial.

  • Progression in the scientific understanding of Attention Deficit Hyperactivity Disorder has led to a greater awareness of the condition as a form of lifelong neurodivergence, rather than a childhood developmental disorder that is always outgrown.
  • From epidemiological data, it is understood that there has been a historical underdiagnosis of ADHD in Scotland. ADHD is one of the most common childhood neurodevelopmental disorders with a likely prevalence of around 1 in 20. Historically, diagnoses have not been made at this rate, resulting in significant under-diagnosis in adulthood.
  • In response to demand from the neurodivergent community, increased awareness, assessment and diagnosis of neurodevelopmental conditions in children, young people and adults is Scottish Government policy (e.g. Scottish Strategy for Autism). This work is supported by NAIT (National Autism Implementation Team).
  • Adults with ADHD are sending a clear message of the benefits of diagnosis for understanding supports/strategies that help and the stress caused by being unable to access assessment.
  • This intended increased awareness, in line with government policy, has contributed to increased awareness in the population, mainstream media and social media.

Assessment and treatment pathway for adults presenting with ADHD

ADHD pathway

For a pdf image of the pathway: ADHD Pathway

Diagnoses made in childhood

Those with existing diagnoses from childhood who have ongoing prescriptions

  • Individuals who have been diagnosed with ADHD in childhood and treated with medication which continues into adulthood can simply be referred to the CMHT through usual processes.
  • Assuming a clear and documented history, they would be seen in the out-patient clinic for review and monitoring of ongoing treatment without any requirement for re-assessment.
  • Patients in these circumstances have been referred to the Adult Psychiatry out-patient clinic as a long-standing practice to ensure that young people can continue with treatment beyond the age of 18 where that treatment remains useful in regard to ongoing educational attainment and beginning work.

Those with existing diagnoses from childhood who have taken a treatment break, but wish to restart

  • This group would be managed in a similar manner as those who continue with treatment (as above).
  • Treatment breaks are a recognised phenomenon. Many young people who were diagnosed before adolescence, for example, may have commenced treatment at a time when decision making was highly parent/professional led. In adolescence, the individual may raise their own questions about the diagnosis and value of daily medication leading to experimentation with treatment breaks.
  • Where the diagnosis is clear and documented, resuming previously effective treatment if functional impairments re-occur in young adulthood will not require re-assessment of diagnosis.

Diagnoses made in Private Sector

  • It is recognised that some individuals will have sought assessment in the private sector due to perceived waiting times or concern around the lack of a specialised NHS service. In principle, we would not wish to cause frustration by re-assessing all individuals who have received diagnoses in the private sector. However, before making treatment recommendations or monitoring ongoing treatment initiated in private care, clinicians must be satisfied by the quality and scope of any assessment that has taken place outwith the NHS.
  • NAIT has provided guidance on this, with a standard checklist for the assessment of private diagnostic reports incorporated into the local pathway (see resources).
  • Therefore, if a patient has already received an assessment and diagnosis out with the NHS, any resultant report should be appended to the CMHT referral for consideration. The point at which the individual patient is able to enter the pathway will vary depending on what has, or has not already occurred, and how this is evidenced.

Other

Adults who are likely to have both Autism and ADHD

  • In Phase 1, the ADHD pathway leads to assessment and potential medical treatment of ADHD alone. Those who have an existing diagnosis of Autism are not excluded from entering the ADHD pathway for assessment. The assessment of Autism continues to occur through the existing local service at this time. Given the significant, and frequently overlapping, co-morbidity of these conditions, in future phases, it is hoped that these services might merge to create a single Adult Neurodevelopmental Service.

NHS Highland Pilot ADHD Pathway Referral Criteria

The RCPsychADHD in Adults Good Practice Guidelines recommends that where a referral is to be made to secondary care:

“There needs to be evidence of a specific cluster of symptoms present in two or more settings and evidence of these symptoms interfering with, or reducing the quality of, an individual’s functioning”

It is expected that only those who require diagnosis, care and treatment will be referred. Referrals should not be pursued for diagnostic curiosity. While non-medical interventions are in development, medication remains a first-line intervention.

Avoid excluding those with objective evidence of success and achievement from assessment. ADHD is not a cause of intellectual impairment. Students and professionals with ADHD may, on the surface, appear to be highly functioning in an academic or specific occupational setting, but there can be a significant cost in maintaining performance. There may be costs or impaired function in other areas. There may be substantial differences in performance across settings, with some settings providing less support or “scaffolding”.

Phase 1 Referral Criteria

  1. Details of ADHD symptoms interfering with or reducing quality of functioning across the lifespan indicating an onset in childhood and information regarding persisting symptoms in adulthood.
  2. Clinical Severity: Symptoms present in two or more settings. (Clinical severity of ADHD is best understood in terms of the associated morbidity; how symptoms of the illness impact on work, education, relationships, health (including mental health), social and fa mily life.
  3. Developmental background
  4. ADHD is also a highly heritable disorder and it is usefu lto be aware of existing or suspected diagnoses inthe same family group.
  5. Any relevant previous assessments e.g. childhood assessments, educational psychology, non NHS mental health or ADHD assessments
  6. Details of medical history with specific reference to cardiovascular, neurological and hepatic disorders.
  7. Physical examination including pulse and BP.
  8. Patient expectations regarding treatment.
    We cannot currently prioritise those who would not wish to pursue medical treatment. See point 9.
  9. We are currently working towards establishing phase 1 of the new ADHD pathway which has a medication focussed approach. Referrals should not be made for the primary purpose of confirming diagnosis. We would ask that referrals are only made where there are symptoms of significant severity, and where the risks, benefits and patient preferences weigh up in favour of a trial of medication following an assessment which results in a diagnosis.

Phase 2 Referral Criteria

  • As phase 1. Except point 8 + 9, where referrals will be accepted where medical treatment is not desired or is contra-indicated. 

Clinical presentation - Core symptoms of ADHD in adults

ADHD is a neurodevelopmental disorder that manifests before the age of 12 (although this may be recognised later) and is characterised by inattention symptoms and/or a combination of hyperactivity and impulsivity symptoms outside the limits of normal variation expected for age and level of intellectual development.

  • The symptoms are not better explained by another mental disorder or physical disorder, or the use of substances.
  • Symptoms must be present across a variety of settings; home and work; with friends, relatives, educators and employers.
  • Symptoms vary across the lifespan, both in nature and severity.
SymptomIn childhoodIn adulthood (may include persistence of childhood symptoms)
Inattention
  • Difficulty paying attention, daydreams
  • Appears not to listen
  • Easily distracted in work and play
  • Careless mistakes, appears not to attend to details
  • Struggles to follow a series of instructions
  • Disorganised with belongings and tools
  • Loses items, even those held as “special”
  • Seems forgetful
  • May avoid tasks which require sustained mental effort
  • May struggle to initiate tasks
  • Hyperfocus on highly rewarding activities with problems set-shifting
  • Problems with sustaining concentration
  • May struggle to complete tasks at work and home
  • Evidence of “half done” tasks
  • Forgets tasks from a sequence if not given individually
  • Difficulty with organisation of necessary tools at work and home; may compensate by rigid adherence to placement of key items (keys, wallet, phone)
Hyperactivity
  • In constant motion “driven by a motor”
  • Struggles to remain seated
  • Squirms, fidgets, jiggles
  • Talks too much
  • Runs, jumps, climbs when not appropriate
  • Can be loud
  • Restlessness and impatience
  • Fidgets
  • This might manifest as a ‘busy brain’ in adults rather than physically
Impulsivity
  • Acts or speaks without thinking or planning
  • May put self in danger –running without risk assessing, into the road or other hazards
  • Difficulty turn-taking in activity and conversation
  • Cannot wait
  • Calls out before question complete; frequently interrupts
  • Verbal impulsivity; talking out of turn, over speaking, completing others sentences; giving away too much (with regret)

Severity assessment

An assessment of severity is a key consideration in determining when to refer. In adults this assessment will be based largely on functional impairment, where it is clear that any functional impairment occurs secondary to ongoing core symptoms of ADHD. 

We know that the expression of ADHD is not constant for any one person. The clinical presentation at any one time represents an interaction between ADHD traits and the current environment. Some individuals may tolerate significant life challenges, or have learned to mask and internalise through these challenges. This can come at a cost, with other mental health challenges presenting. Others may seem to have experienced minimal impairment in childhood due to parental scaffolding (support) but go on to encounter greater challenges in adulthood. Functional impairment in ADHD, therefore, can be nuanced and very individualised.

Functional impairment may occur in different domains. An individual affected by clinically significant ADHD is likely to describe a specific and consistent ongoing pattern of difficulties in each domain:

  • At home, the individual may report difficulties in organisation and planning which impact on home and family life. 
  • At work (or in education), there may be difficulties in meeting the expectations of employment in areas such as productivity, reliability and time-keeping.
  • In relationships, lapses in memory and organisation may cause strain and discord.
  • Difficulties across these domains may lead to secondary impacts on finances, self-esteem and mental wellbeing.

Identifying an individual’s specific areas of functional impairment is the first step in identifying the measureable goals of medical treatment, or other interventions.

Family history

ADHD is a highly heritable condition. It is the most heritable condition in mental health and among one of the most heritable conditions across medicine. Data on the heritability of the condition is increasing, previously hindered by historical under-diagnosis.

Although multifactorial in aetiology, the trend in published data is toward an increasing load of genetic factors and, proportionally, a decreasing attribution to environmental factors.

  • Twin studies (where environmental factors are accounted for) suggest concordance between twins of around 0.8. That is, if one twin is affected, there is an 80% likelihood that the other twin will also meet criteria for diagnosis. (Larsson et al, 2014).
  • Prevalence in children of affected parents is affected by whether one or both parents are affected. In a study of the Norwegian birth registry and data on diagnosis, the prevalence for children with an affected father was found to be around 18%, 25% with an affected mother, and with both parents affected this was around 35%. (Solberg et al, 2020).
  • When a child is diagnosed with ADHD, there is an around 50% chance that one of the parents is also affected.
  • When a child is diagnosed with ADHD, later born siblings have an increased likelihood of being diagnosed with ADHD or ASD or both conditions.

It is likely, therefore, that in primary care, individuals who consult about ADHD will come from families in which ADHD is common and others within the same family may have diagnoses or suspected diagnoses. This can provide important information to support diagnosis of the individual.

Management in secondary care

The phases have also been created to recognise that some aspects of ADHD management are still in development locally. For example, while NICE guidelines recommend non-medical interventions as a first line treatment (Environmental Modification) we do not currently have clinicians trained in this treatment modality.

Therefore, in phase 1 we have a medication focussed approach. That is, referrals should not be made for the primary purpose of confirming diagnosis. We would ask that referrals are only made where there are symptoms of significant severity, and where the risks, benefits and patient preferences weigh up in favour of a trial of medication following an assessment which results in a diagnosis. Further information on this decision making and alternative strategies follows.

In later phases, we will aim to deliver support at different levels, according to need, before, during or after diagnostic assessment. We hope to develop our multidisciplinary team to involve professionals with specialist knowledge in Environmental Modification, such as Occupational Therapists. We intend to build on learning from other areas in developing access to self-help resources and information, peer support and support with aspects of daily life and routines impacted by ADHD, such as employment, education or independence and success within home and community settings.

Management in Primary Care

Diagnoses of ADHD are usually made on the basis of clinical history, corroborative information such as school reports and structured neurodevelopmental assessment. However, assessment in Primary Care may lead to confirmation of ADHD traits, or a likely/”working” diagnosis of ADHD following exploration of current symptoms, developmental background, family history and informant accounts.

A “working” diagnosis is made through discussion between a Health Care Practitioner familiar with ADHD criteria, clinical presentations and the individual. Full neurodevelopmental assessment has not been completed and medication is not indicated.

However, this may support an individual to understand their own experiences or support needs in the context of having ADHD traits. Confirming a likely “working” diagnosis in Primary Care may be sufficient for many individuals in accessing appropriate adaptations at work (through their Occupational Health department), in education through Student Support Services, or in finding appropriate employment supported by Access to Work in the job centre.

Confirmation of ADHD traits/likely diagnosis in Primary Care may be supported by the following freely available self-report questionnaires. However it is important to note that meaningful interpretation of rating scales follows a suspected diagnosis on clinical history and examination. Rating scales used in isolation or to screen populations tend to have a high rate of false positives.

Rating Scales 

See resources

NAIT (National Autism Implementation Team)

The NAIT Team are professionals from Education, Speech and Language Therapy, Occupational Therapy and Psychiatry, who have considerable experience and expertise in research and practice, working with neurodivergent individuals of all ages, their families and others who support them. NAIT provide practitioner to practitioner advice. ADHD is a NAIT priority, given that it is also a form of neurodivergence, and often co-exists with Autism.

Further reading for referrers

For wider reading on ADHD in Adulthood

Including prescribing decisions, medical treatments and suggested monitoring: 

Self-help resources

Resource packs

Sleep

Student support

Employment Support

ADHD Foundation and Scottish ADHD Coalition Resources

Last reviewed: 27/10/2022

Next review date: 30/04/2023

Author(s): Mental Health Team.

Version: 1

Approved By: Approved TAMSG of the ADTC

Reviewer name(s): Dr Amy Macaskill, Consultant Psychiatrist Clinical lead Adult Psychiatry NHSH North .

Document Id: TAM535

Internal URL: https://nhshighlands.azurewebsites.net/umbraco/#/content/content/edit/14545

Related resources

Further information for Health Care Professionals

References

Self-help resources

Resource packs 

Sleep 

Student support 

Employment Support 

ADHD Foundation and Scottish ADHD Coalition Resources