The role of the GP in the care of people with learning disabilities
As a GP, your role is to:
- diagnose, investigate and manage people with learning disabilities, using history, examination, monitoring and referral where appropriate. Consider how differences can vary over time as well as between individuals.
- communicate effectively and consider the need for reasonable adjustments.
- be aware of the social and psychological impact of learning disabilities, including the benefits of diagnosis for access to support and potential issues such as social stigma.
- understand the difference between learning disabilities and learning difficulties.
- recognise the risk of diagnostic overshadowing and potentially atypical presentations, especially when unwell.
- coordinate care with carers and other organisations and professionals (including other health, education and social care services) and consider when and how best to share information.
- offer regular advice and support to patients, relatives and carers regarding prevention, prescribing, monitoring and self-management to address poorer health outcomes, reduced life expectancy and overall health inequalities.
Knowledge and skills guide
Consider the following areas within the general context of primary care:
- equality and diversity
- effect on family and carers
- cultural and religious factors
- educational needs and the role of education, health and care (EHC) plans
- local services available for support, such as specialist early education services, speech and language support and financial support
- impact on any other existing physical and/or mental health conditions, including the importance of dual diagnoses with neurodevelopmental conditions
- awareness of conditions that are more likely to develop (for example, dementia, malnourishment, obesity, osteoporosis)
- safe prescribing and managing polypharmacy, including when to stop medication
- adolescence and puberty, including menarche, safe sex and contraception
- safeguarding of vulnerable children and adults
- consent, capacity and confidentiality, including consideration of mental capacity assessment, power of attorney, advanced directives and ‘do not attempt resuscitation’ (DNAR) notices where relevant
Common and important conditions
- Onset before birth, including genetic and maternal issues when pregnant (such as Fragile X, Down’s syndrome and fetal alcohol spectrum disorder (FASD))
- Onset during birth, such as complications resulting in hypoxia (such as cerebral palsy)
- Onset during early childhood (for example, meningitis or injury)
- Profound and multiple learning disability (PMLD)
Service issues
- Reasonable adjustments to consider the time, environment, access, communication and help needed
- Use of practice and population-level data such as registers to improve care
- Adolescents transitioning from paediatric to adult care
- Communication and collaboration between services when there is more than one diagnosis, for example, cardiac condition, dementia, autism
- Digital technology is increasingly prevalent and needs to be carefully considered so that it does not become a barrier. People with learning disabilities can struggle with digital literacy and access to technology
Case discussion
Amy Clark is a 41-year-old woman who lives in a residential home supported by staff, some of whom are permanent and some of whom are employed temporarily by an agency. She has a learning disability and attends a local training centre five days each week. Her parents live near the residential home and visit her regularly; every other weekend she returns home.
The staff bring Amy to see you, saying that recently her behaviour has changed. She is accompanied by a carer who has looked after her for two years and relates a detailed history, together with their concerns:
- Amy has become aggressive, especially at mealtimes. She can lash out and hit a member of staff or someone sitting next to her during a meal.
- Her appetite has decreased and there is concern she has lost weight.
- Whereas before she used to be the first resident ready to go to the training centre every morning, she is now rarely ready and needs help with dressing before she goes.
- She used to recount to her parents what she had made and done each day but now remains quiet when they visit.
You ask about her general health and the staff tell you that:
- Amy frequently wets herself
- Her periods are no problem now because she has not had one for seven months
- Her sleep is disturbed, and she wanders from her room at least once every night
- Her bowels open every day as before, but she has become incontinent of faeces
Questions
These questions are provided to prompt you to consider the key points of the case. They can form the basis for a case 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 learning disabilities? Might they impact on my interaction with Amy and her carer? |
An ethical approach This is about practising ethically with integrity and a respect for equality and diversity. | What does patient autonomy mean for this patient? How would I react to this consultation if an adult without a learning disability had presented with the same behaviour? What social, legal and ethical factors are important when considering Amy’s ability to make decisions about her care? |
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 difficulties in obtaining a history of behaviour change in an adult with a learning disability? How might I optimise communication with Amy (for example, consultation skills, communication aids)? How might communicating with Amy’s carer affect the doctor–patient relationship? |
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. | How else could I obtain further information? What further investigations are needed? What bedside tests might be helpful? |
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 would be appropriate in this case? What issues should I take into account before conducting a physical examination? What screening tools might I use to assess Amy’s mental health? |
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. | What factors could explain the changes to Amy’s behaviour and general health? What are my differential diagnoses and how could I explore them? |
Clinical management This is about the recognition and a generalist’s management of patients’ problems. | What drug and non-drug interventions are available to help manage challenging behaviour in people with a learning disability? Are there any gaps in Amy’s care that need addressing? How will I follow up this consultation? |
Medical complexity This is about aspects of care beyond the acute problem, including the management of comorbidity, uncertainty, risk and health promotion. | What are the legal considerations for an adult with a learning disability residing in a supported home whose parents visit at least weekly? What do I know about safeguarding adults? What safeguarding issues do I need to explore in this case? How does the practice coordinate health promotion for patients living in residential care? |
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. | Who are the other members of this patient’s care team, of which I am a member? How do the different people and agencies involved in Amy’s care communicate with each other? Have all clinicians, carers and support staff received appropriate training about learning disability? |
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 are the difficulties of getting research data about the management of patients with a learning disability? What evidence base underlies the use of regular health checks in people with a learning disability? How much do I know about specialist support services (such as behavioural support teams and psychiatric or neurological assessment) and their availability in my area? What local or national guidelines (for example, from the National Institute for Health and Care Excellence (NICE) and Scottish Intercollegiate Guidelines Network (SIGN)) are there about learning disability? |
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. | How can a practice prepare for acute episodes of illness in adults with a learning disability? How could my practice environment impact on the care provided to people with a learning disability (such as access, atmosphere in the waiting area, measures taken to compensate for sensory impairment)? |
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 patients with a learning disability? |
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 residential facilities, daytime activities, support groups, advocacy) are available to this patient in my practice area, including those provided by the voluntary sector? |
How to learn this area of practice
Work-based learning
In general practice, GP registrars should take the opportunity to gain a better understanding of patients who are looked after in partnership with the specialist team and other agencies. You should also actively assist in regular health checks.
You may also wish to spend time with your local learning disability specialist and attend specialist clinics to gain a better understanding.
Self-directed learning
The care of people with a learning disability is an excellent subject for discussion with your GP trainer and in groups with other GP registrars. Additionally, discussing issues with patients and carers themselves will help you gain valuable insights into the health and social care needs of those with a learning disability.
You can find an eLearning module(s) relevant to this topic guide at elearning for healthcare.
Learning with other healthcare professionals
The care of people with learning disabilities is a multi-agency activity that involves the patient, their carers and professionals from health and social care. Your learning with other professionals is, therefore, very important to gain a better understanding of their roles and how best care may be delivered.
Examples of how this area of practice may be tested in the MRCGP
Applied Knowledge Test (AKT)
- Recognition of physical or psychiatric illness associated with learning disabilities
- Safeguarding of vulnerable children and adults
- Recognition of normal and delayed child development
Simulated Consultation Assessment (SCA)
- A young woman with a learning disability requests contraceptive advice
- Phone call: a carer wants to discuss differential diagnoses and possible management strategies for a young man with a learning disability and known behavioural issues who has recently developed sudden jerky movements
- A woman with a learning disability is brought to the surgery because she is limping and reluctant to weight-bear. Her medication includes Depo-Provera and sodium valproate
Workplace-based Assessment (WPBA)
- Consultation Observation Tool (COT) about the communication skills required to teach a patient with a learning disability how to use an inhaler
- Case discussion about a couple struggling to cope with caring for the husband’s middle-aged sister, who has a learning disability and lives with them