Scope

  • Highland HSCP 
  • Primary and Secondary Care

NHS Highland Mental Health and Learning Disability Service initiated a pathway for ADHD as a pilot project in October 2022. The demand for this service has been high and quickly overwhelmed our capacity to respond timeously to referrals and in a way that allowed the patient journey to progress efficiently. In addition, the funding for this pilot project has not been continued making it impossible to progress to developing it further as initially planned.

The National Autism Implementation Team (NAIT) have brought together the learning from the 5 pilot sites across Scotland, providing guidance that helps us all take the next steps in designing sustainable pathways and services for those living with neurodevelopmental conditions.

NHS Highland is now redesigning our pathway in the light of this guidance. We expect to have this ready by late March 2024.

In the meantime we have removed old information from the guidance below and provided information for referrers and people already referred to the service. Our aim is to continue to work through referrals already received and assessments or treatment trials already commenced. However, due to the volume received, we anticipate delays to this process while we redesign the pathway and build the team required to deliver it.

Thank you for your patience as we continue to work on this.

Assessment and treatment pathway for adults presenting with ADHD

New referrals

The new NHSH Pathway will be based on the following guidance from NAIT. It gives a broad overview of how people living with neurodivergent conditions may seek help. It also gives guidance on referral criteria based on severity of symptoms and impact on functioning. This should be used by potential referrers to assess when secondary care services should be accessed until we publish our revised pathway in Spring 2024.

NAIT: Adult Diagnosis Referral Thresholds Stepped Care Pathway 2021

Please do not ask patients to complete questionnaires to accompany referrals to secondary care. Questionnaires can provide helpful information but are not diagnostic tools in isolation. We will send patients the relevant questionnaires at the appropriate time.

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 still 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

  • Individuals who have been diagnosed with ADHD in childhood and who have taken a treatment break can still be referred to the CMHT through usual processes. The referral will be allocated to a team member able to prescribe the appropriate treatment.
  • 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: Prescribing ADHD medication to adults following private sector diagnosis in Scotland 2022
  • 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: Our pilot ADHD pathway led 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.
  • Patients already referred to the pilot ADHD Pathway and who have opted in but who we have not yet assessed, will receive a letter by the end of February 2024 confirming that we have them on our waiting list that unfortunately there will be a further delay to their assessment. We have told them we will contact them in 6 months with a further update and will copy this letter to GPs for their records.
  • Patients referred on or after the 11th October 2023 will be triaged against existing CMHT referral criteria and be allocated as appropriate. If ADHD assessment is requested the triaged referral will be held until they can be processed against the new referral criteria to be developed by end of Feb 24. Patients will be contacted with the outcome of that process, once it is complete. If referrals already received do not meet the new criteria, patient and referrer will be contacted with next steps.
  • Patients who have been assessed and are awaiting follow up appointments with Consultants will receive a letter from us to inform them that there will be a further delay but that we will endeavour to see them and will keep in touch with them until we do.
  • Patients already on treatment we will endeavour to continue their care as clinically indicated.

NHS Highland Pilot ADHD Referral Criteria

While the pathway is being redesigned we ask referrers to consider the presence of the core symptoms of ADHD in adults (see section below), and the impact on functioning.

The table in the Severity Assessment section gives guidance from NAIT on thresholds to be met for referral at all levels of presentation. We will use this guidance as we redesign the pathway. Referrers should use this as a guide in the interim period also.

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.
Symptom In childhood In 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 that require sustained mental effort
  • May struggle to initiate tasks
  • Hyperfocus on highly rewarding activities with problems set-shifting

 

  • 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. 

See NAIT: Adult Diagnosis Referral Thresholds Stepped Care Pathway 2021

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 that 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

This section is under review and development. 

Management in Primary Care

In a specialist service, diagnoses of ADHD are usually made on the basis of clinical history, corroborative information, such as school reports, and structured neurodevelopmental assessment. 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 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.

Further reading for referrers

For wider reading on ADHD in Adulthood

Including prescribing decisions, medical treatments and suggested monitoring: 

Self-help resources

Living with symptoms of ADHD:

For adult patients living with traits of ADHD but not meeting criteria for assessment in secondary care mental health services, the following advice may be helpful.

  1. Aim to eliminate alcohol and illicit substances from the diet. Avoid excessive caffeine intake.
  2. Let off steam by exercising regularly. For example, 30 minutes of exercise, three times a week alongside increasing the daily step count and small changes such as taking the stairs instead of lifts or escalators.
  3. Sleep can sometimes be a challenge. This is best managed through a change in habit. For example, following a sleep hygiene program for several months. The following sleep hygiene resource has been developed by NHS inform: sleep-problems-and-insomnia-self-help-guide
  4. If you find it hard to stay organised, then make lists, keep diaries, stick up reminders and set aside regular planning time at the beginning and end of each day to decide how to use your time to meet your goals. Think about, and trial, what works best for you and your circumstances, whether this is a white board, paper calendar or an electronic diary or app. If you lose important items regularly, try to assign and label specific places to keep the essentials.
  5. Find ways to help you relax. Listening to music or breathing exercises can help. Breathing exercises can be found here: breathing-exercises-for-stress/ Mindfulness can be learned and practised using apps, such as Headspace.
  6. If you have a job, speak to your employer about your difficulties, and discuss anything they can do to help you work better. If you're at college or university, ask about what adjustments can be made to support you, such as extra time to complete exams and coursework
  7. Contact or join a local or national support group – these organisations can put you in touch with other people in a similar situation, and can be a good source of support, information and advice.
  8. Keep a diary of symptoms and difficulties arising from ADHD symptoms; this can help with spotting patterns of what helps and what doesn’t.

Resource packs

Sleep

Student support

Employment Support

ADHD Foundation and Scottish ADHD Coalition Resources

Editorial Information

Last reviewed: 31/01/2024

Next review date: 30/04/2027

Author(s): Mental Health Services .

Version: 2

Approved By: TAMSG of the ADTC

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

Document Id: TAM535

Related resources

Further information for Health Care Professionals