The role of the GP in the care of people with neurodevelopmental and neurodivergent conditions
The International Classification of Diseases (ICD-11) lists a number of conditions under ‘neurodevelopmental disorders’ that are typically considered to be those differences in neurological development with onset before the age of 18.
The term ‘neurodiversity’ encompasses the whole spectrum of cognitive experience, encompassing both neurotypical and neurodivergent people. Neurodivergence has evolved as a preferred umbrella term and encompasses those people who may interpret and process information in qualitatively different ways. It is important to recognise that many people who are neurodivergent do not consider themselves to be ‘disordered’ or disabled, although it is important to acknowledge the disabling effect of their condition on their quality of life. Many people may not be aware that their difficulties may be as a result of underlying neurodivergence or may have an awareness but be anxious about disclosing due to societal stigma.
It is thought 15-20% of the population are neurodivergent. Conditions under the neurodivergent umbrella include:
- attention deficit hyperactivity disorder (ADHD)
- autism
- developmental co-ordination disorder
- developmental language disorder
- tic disorders and Tourette’s syndrome
- learning disability
- specific learning difficulties, including dyslexia and dyscalculia.
GPs play a crucial role in the following:
- Early identification and intervention: timely recognition of neurodisability and neurodivergence by GPs facilitates early intervention, ensuring that individuals receive appropriate support and treatment. This proactive approach not only allows for access to necessary resources but also has the potential to improve outcomes in academic, social and occupational domains as well as improving quality of life.
- Preventing misdiagnosis or delayed diagnosis: neurodivergent individuals are sometimes mislabelled as having other conditions such as bipolar disorder or personality disorder. Recognising neurodivergence allows GPs to identify and support patients appropriately and help manage any co-occurring conditions more effectively.
- Addressing comorbidities: neurodivergent conditions often overlap and may also coexist with other symptoms such as anxiety or depression. GPs can help to differentiate between these conditions.
- Educating patients and families: GPs can play a pivotal role in supporting and educating neurodivergent patients and their families as well as signposting to additional sources of support. Educated families are more able to support the neurodivergent individual, contributing to improved physical and mental wellbeing.
- Promoting public awareness: as primary healthcare providers, GPs can contribute to raising awareness about neurodivergence within the community. This awareness can reduce stigma and encourage individuals experiencing symptoms to seek help, which may benefit the overall mental health of the population.
- Optimising healthcare resources: timely recognition of neurodisability and neurodivergence by GPs helps in optimising healthcare resources by directing appropriate referrals, reducing unnecessary investigations and prescribing, and ensuring efficient use of mental health and other services.
Knowledge and skills guide
For each problem or disease, consider the following areas within the general context of primary care.
A GP should:
- gather comprehensive medical and behavioural histories to better understand the individual's symptoms and challenges
- develop personalised, evidence-based treatment plans that may include a combination of behavioural interventions, psychoeducation, counselling, and medication management;
- work closely with patients and their families to tailor the treatment plan to their specific needs, preferences, and circumstances;
- suggest appropriate behavioural strategies and lifestyle recommendations including advice on organisation, time management, sleep hygiene, and the benefits of exercise and a healthy diet;
- work with other health professionals to support patients, facilitating communication and collaboration among the various professionals involved in care and acting as a central coordinator of care to ensure a holistic approach;
- where appropriate, familiarise themselves with medications for particular conditions, such as Tourette’s, autism or ADHD, especially side effects and monitoring, and prescribe safely where appropriate.
Symptoms and signs
GPs should be able to recognise the following:
- behavioural problems as an indication of underlying difficulties. These may include neurodivergence with struggles with executive function but may also include underlying problems such as pain, illness or abuse
- delayed or altered development in children
- difficulties with communication, social relationships or managing daily affairs, such as chaotic organisation, missed or multiple non-attendance at appointments, or poor compliance with medication
- difficulties processing sensory information, including the perception of pain, interoception and proprioception
- depression, anxiety or eating disorders may indicate an underlying neurodivergence
- physical symptoms relating to connective tissue disorders, such as hypermobility, Ehlers-Danlos syndrome and dysautonomia, as well as ‘functional’ conditions such as chronic fatigue and fibromyalgia, may be an indicator of underlying neurodivergence
- persistent restricted, repetitive and inflexible patterns of behaviour, interests or activities
- difficulties with processing emotions and with emotional regulation, such as hyperreactivity and anger
- atypical presentation of psychiatric or physical illness because of sensory, communication and cognitive difficulties and poor response to treatment
- the concept of diagnostic overshadowing, that is, when a person's presenting symptoms are attributed to the neurodisability rather than another, potentially treatable cause, or vice versa
- substance misuse, homelessness, sexual abuse, trauma and prison incarceration are all higher in patients with neurodivergence
- presentation of patients may occur when strategies for compensation fail, such as during transitions.
Common and important conditions and co-occurring conditions
- ADHD
- Autism
- Developmental co-ordination disorder
- Developmental language disorder
- Tic disorders and Tourette’s syndrome
- Learning disability
- Specific learning difficulties, including dyslexia and dyscalculia
Common associated physical health disorders include but are not limited to:
- cardiovascular disease
- epilepsy
- oropharyngeal and gastrointestinal disorders
- respiratory disorders
- sleep disorders
- visual, speech, hearing and mobility problems
- hypermobility spectrum disorder and Ehlers-Danlos syndrome
- postural tachycardia syndrome (PoTS) and dysautonomia
- chronic pain and fibromyalgia
- obstructive sleep apnoea (OSA)
- migraine.
Common associated mental health problems (which may present differently from the general population) include:
- anxiety and depression
- bereavement reactions
- bipolar affective disorder
- schizophrenia
- specific associations (for example, autism spectrum disorder and ADHD are linked).
Examinations and procedures
- Tailored physical and mental state assessments in neurodivergent patients, recognising that they may be unable to verbalise or describe symptoms typically
- Screening tools and questionnaires for neurodevelopmental conditions
Investigations
- Physical health checks such as blood pressure
- Appropriate blood tests to rule out an alternative underlying cause
- Electrocardiogram (ECG) interpretation
Service issues
- Understanding the local services and waiting lists
- Understanding the role of schools especially the role of the special educational needs coordinator (SENCO) (additional learning needs coordinator (ALNCO) in Wales)
- Consultation skills to match the needs of service users (such as adapting language and consultation techniques, using advocates or carers with communication expertise, and other communication aids)
- Reasonable adjustments to accommodate neurodiversity in primary care (such as recognising communication differences or sensitivities in sensory processing)
- Annual health checks:
- identification, management and referral of common associated physical conditions (for example, epilepsy, diabetes)
- health promotion including sexual health, contraception, cardiovascular disease risks, cancer screening and smoking cessation
- Safe prescribing and management of polypharmacy
- Specialist services to diagnose, assess and support neurodivergent patients
- Support for adolescents transitioning from paediatric to adult care
Case discussion
Sally Doherty is 23 years old. She comes to see you as she is really struggling with her mental health and feels she is ‘useless’. She is in her first year of a law degree but feels she is an ‘imposter’. She struggles to get to lectures on time. She cannot motivate herself to get started on anything and can sit and scroll on her phone for hours. She only ever seems to get the energy to do an assignment the night before it is due and only then once she has procrastinated with other tasks, such as cleaning her kitchen or baking a cake. She is disorganised and keeps missing lectures or arriving late. You note that she has visited the practice on a previous occasion, requesting a letter to defer her exams due to ‘low mood’. She has been following content creators on TikTok and identifies with their descriptions of what it is like to have ADHD.
You ask Sally about her general health and she mentions that she is dyslexic. She also has had difficulties with constipation since birth. You note that she was referred to a podiatrist when she was younger and was prescribed an orthotic for ankle support.
Questions
These questions are provided to prompt you to consider the key points of the case. They can form the basis for a case-based discussion with your educational supervisor and will assist you in writing reflective entries in your ePortfolio. The questions are examples to trigger reflection and are not intended to be comprehensive.
| Core capabilities | Questions |
|---|---|
Fitness to practise This is about professionalism and the actions expected to protect people from harm. This includes the awareness of when an individual’s performance, conduct or health, or that of others, might put patients, themselves or their colleagues at risk. | What are my beliefs and assumptions about neurodivergent conditions? Might they impact on my interaction with Sally? Do I have personal experience of neurodivergent conditions? Might these impact on my management of Sally? |
An ethical approach This is about practising ethically with integrity and a respect for equality and diversity. | How would I ensure Sally has equitable access to healthcare, including making follow-up appointments? |
Communicating and consulting This is about communication with patients, the use of recognised consultation techniques, establishing and maintaining patient partnerships, managing challenging consultations, third-party consulting, the use of interpreters and consulting modalities across the range of in-person and remote methods. | What are the challenges in obtaining a history of ADHD? How might I optimise or adjust communication with Sally? |
Data gathering and interpretation This is about the gathering, interpretation and use of data for clinical judgement, including information gathered from the history, clinical records, examination and investigations. | What other sources of information might be helpful in diagnosing Sally? What further investigations and tests are indicated? |
Clinical examination and procedural skills This is about clinical examination and procedural skills. By the end of training, the GP registrar must have demonstrated competence in general and systemic examinations of all the clinical curriculum areas, including the five mandatory examinations and a range of skills relevant to general practice. | What physical examinations should be performed, and why? Are any initial bedside tests indicated? What further investigations might I arrange? |
Decision-making and diagnosis This is about having a conscious, organised approach to making diagnosis and decisions that are tailored to the particular circumstances in which they are required. | Sally identifies her symptoms as being in keeping with ADHD. What other differential diagnoses would I consider? Would I screen for any specific potential associated conditions? |
Clinical management This is about the recognition and a generalist’s management of patients’ problems. | What (if any) referral would I consider for Sally to confirm or refute any diagnosis? Would I consider or discuss any medications at this initial appointment? |
Medical complexity This is about aspects of care beyond the acute problem, including the management of comorbidity, uncertainty, risk and health promotion. | How would I help Sally engage with appropriate follow-up care? Might there be any safeguarding concerns given Sally’s symptoms? Would specific health promotion advice be indicated? |
Team working This is about working effectively with others to ensure good patient care and includes sharing information with colleagues and using the skills of a multiprofessional team. | Which other professionals would it be appropriate to involve in Sally’s future care (medical and non-medical)? Are practice staff confident in interacting with and supporting neurodivergent patients? |
Performance, learning and teaching This is about maintaining the performance and effective CPD of oneself and others. The evidence for these activities should be shared in a timely manner within the portfolio. | What evidence base exists around annual health checks for people with neurodivergent conditions? What are the challenges of obtaining accurate and up-to-date evidence about the management of neurodevelopmental disorders? What local or national guidelines exist around neurodivergent conditions? |
Organisation, management and leadership This is about understanding how primary care is organised within the NHS, how teams are managed and the development of clinical leadership skills. | Could I improve the practice environment for neurodivergent patients, such as reviewing access to appointments and set-up of the waiting room? Are there any local GPs with an Extended Role (GPwER) or primary care leads I might wish to contact for my own learning? |
Holistic practice, health promotion and safeguarding This is about the ability of the doctor to operate in physical, psychological, socio-economic and cultural dimensions. The doctor is able to take into account the patient’s feelings and opinions. The doctor encourages health improvement, self-management, preventative medicine and shared care planning with patients and their carers. The doctor has the skills and knowledge to consider and take appropriate safeguarding actions. | What does the biopsychosocial model mean for neurodivergent patients? How might I help Sally engage with any health promotion advice? |
Community health and environmental sustainability This is about the management of the health and social care of the practice population and local community. It incorporates an understanding of the interconnectedness of health of populations and the planet. | What community resources (such as support groups, third-sector organisations, link workers) are available to Sally in my practice area? How might I best help Sally engage with such resources? |
How to learn this area of practice
Work-based learning
In general practice, GP specialty trainees should take the opportunity to gain a better understanding of patients who are looked after in partnership with a specialist team and other agencies. You should also actively assist with appropriate monitoring of potential associated health conditions.
You may also wish to spend time with your local specialist teams (for example, psychiatry and paediatric teams) in seeing neurodivergent patients to gain a better understanding of how to support them.
Self-directed learning
The care of neurodivergent people is an excellent subject to discuss with your GP trainer and in groups with fellow trainees. Discussing issues with patients and their families will help you gain valuable insights into their health and social care needs.
There may also be local learning events you can attend if you wish to learn more.
You can find an eLearning module(s) relevant to this topic guide at elearning for healthcare.
Learning with other professionals
The care of neurodivergent people is a multi-agency activity that must involve the patient and relevant allied professionals, including health and social care, third sector or community agencies and education providers. Multiprofessional learning is important to gain a better understanding of the roles of different services in the care of the patient, and care should be coordinated between professionals. You may wish to attend training or teaching sessions with relevant specialist trainees in these conditions. (including psychiatry, paediatrics, occupational therapy, speech and language therapy).
Examples of how this area of practice may be tested in the MRCGP
Applied Knowledge Test (AKT)
- Diagnostic overshadowing in autism or ADHD and other neurodivergent conditions
- Sex differences in assessment and diagnosis
- Medication for ADHD or tic disorders
- Statutory legislation for vulnerable adults
Simulated Consultation Assessment (SCA)
- Phone call: a carer wants to discuss diagnosis and management for a young autistic man who has recently developed sudden jerky movements
- Phone call: a mother wishes to discuss concerns her young son is not progressing well at school due to possible ADHD
- Role player who wishes to discuss work issues due to his concerns about possible autism spectrum disorder (ASD)
Workplace-based Assessment (WPBA)
- Consultation Observation Tool (COT) on teaching a patient with dyspraxia how to use an inhaler
- Log entry about an autistic child and liaison with the child health team to get a statutory statement for school
- Case discussion about the difficulties of shared care in ADHD, especially diagnoses obtained privately