GP mythbuster 53: Care of people with a learning disability in GP practices

Mencap describes a learning disability as: a reduced intellectual ability and difficulty with everyday activities – for example household tasks, socialising or managing money – which affects someone for their whole life.

The Diagnostic and Statistical Manual of Mental Disorders defines learning disability as an intellectual disability that begins in childhood and is characterised by intellectual difficulties as well as difficulties in conceptual, social, and practical areas of living.

People with a learning disability tend to take longer to learn and may need support to develop new skills, understand complicated information and interact with other people.

Health issues

People with a learning disability have poorer physical and mental health than other people. They experience health inequalities that affect life expectancy, and many of these deaths are avoidable and not inevitable. LeDeR research has shown that on average, people with a learning disability die earlier than the rest of the population, and do not receive the same quality of care as people who do not have a learning disability.

People with a learning disability are less likely to access and participate in:

• preventive care
• healthcare reviews
• national screening and vaccination
• help for obesity
• screening for cancer, thyroid disease and diabetes.

Reasons for this may include not being able to access care because of barriers such as using a telephone, reading letters or using technology. Other reasons may include not having a representative to take them, advocate for them or transport them to appointments.

People with a learning disability may have physical disabilities that affect how they access care, such as hearing, vision or mobility issues.

Information for people should be written and presented in a format that enables them to make decisions within the limits of their capacity needs, so they can consent to and be involved in shared decision making.

Mencap has published findings from research on health inequalities for people with a learning disability.

People with a learning disability are more likely to experience severe mental illness and have higher rates of:

• psychosis
• dementia (particularly those with Down Syndrome)
• respiratory diseases
• multimorbidity
• complex health conditions
• polypharmacy (using multiple prescribed medicines).

People with a learning disability have higher rates of psychotropic medicine use than people in the general population.

There is also a lack of coordinated care and a greater likelihood of adverse events from incompatible interventions.

When working with people with a learning disability, clinicians should take an approach that focuses on a person’s strengths (including personal strengths and social and community networks) rather than just focusing on what they cannot do. See Social Care Institute Excellence What is a strengths-based approach.

Annual health checks

Annual health checks can identify undetected health conditions early, ensure that ongoing treatments are appropriate and establish trust and continuity of care.

They should be coordinated with medicine reviews and a review of long-term conditions wherever possible to reduce the number of visits to the service and inconvenience for the patient and carers.

A suitably qualified clinician who understands a person’s wider needs and issues should carry out these checks.

For further information, see:

• Learning disabilities: Making a difference toolkit (NHS England)
• the benefits of joining the GP Learning Disability Register (Mencap).

Learning Disabilities Health Check Scheme

The Learning Disabilities Health Check Scheme is a local enhanced service (LES) that practices can choose to deliver. The scheme provides funding and support for delivering the service. It also provides activity data that supports NHS England’s future commissioning decisions.

For further information, see

• resources for the scheme
• guidance from LeDeR on providing specialist services for people with learning disabilities.

Staff training and supervision

From 1 July 2022, all health and social care providers registered with CQC must ensure that their staff receive training in learning disability and autism, including how to interact appropriately with people with a learning disability and autistic people. This should be at a level appropriate to their role. 

This new legal requirement was introduced by the Health and Care Act 2022. You still need to meet the requirements of Regulation 18, which requires you to provide employees with appropriate support, training, professional development, supervision and appraisal to enable them to carry out their duties.

We do not tell you specifically how to meet your legal requirements in relation to training. You are responsible for ensuring your staff are appropriately trained to meet the requirements of the regulations. See our statutory guidance on Regulation 18: Staffing and our update on the new requirement for training in learning disability and autism. This explains how it affects a GP practice and our approach to training staff to support autistic people and people with a learning disability.

The new requirement does not specify a training package or course for staff. However, in conjunction with partners such as Health Education England, Skills for Care and NHS England and NHS Improvement, the government has developed and trialled a training programme, which it is calling the Oliver McGowan Mandatory Training on Learning Disability and Autism , as its preferred training programme. This training is named after Oliver McGowan, whose sad death shone a light on the need for health and social care staff to have better training in autism. It has been co-produced and will be delivered by trainers with lived experience of learning disability and autism

Accessible information standards

Organisations that provide NHS care or adult social care are legally required to follow the Accessible Information Standard.

For more information see:

• our guidance on making information accessible
• NHS England’s guide to making information accessible for people with a learning disability.

Reasonable adjustments

GP practices must make reasonable adjustments under equality legislation and have systems that alert staff that a person has a learning disability. This is to make sure people with a learning disability can use their service in the same way as others.

For further information, see:

• our guidance on reasonable adjustments for disabled people
• The Equality Act 2010 and the Equality and Human Rights Commission's guidance on disability discrimination.

Practices should speak with carers and patients to find out what adjustments the person needs to support them when attending. For example, a quiet room or waiting in a car to avoid waiting in crowded spaces.

When we assess

When we assess GP practices, we look at how providers adapt and provide care to people whose circumstances may make them vulnerable, which includes people with a learning disability. We look at how providers make sure care, support and treatment meets their needs and preferences.

We assess against:

• Regulation 9 (Person centred care)
• Regulation 10 (Dignity and Respect)
• Regulation 11 (Need for consent)
• Regulation 12 (Safe care and treatment)
• Regulation 18 (Staffing)

We may not look at every regulation every time we assess your practice. If a concern is in relation to a person with a learning disability, we will check certain areas, for example:

• how you make sure you get people's consent to care and treatment, or the consent of a person authorised to speak on their behalf
• whether people's care and treatment are appropriate, and that care meets their needs and reflects their preferences
• whether care and treatment is being delivered safely
• whether staff are treating people with dignity and respect
• whether you protect people from abuse and improper treatment
• whether the training provided to staff is appropriate and provides staff with knowledge about how to interact and support people with a learning disability.

More resources

• LeDeR Action from Learning helpful resources
• Health and Care of People with Learning Disabilities - NHS Digital
• Learning disability and autism (GOV.UK)
• Mental ill-health in adults with intellectual disabilities: prevalence and associated factors
• Right care pathway diabetes pathway - reasonable adjustments for people with learning disabilities who have diabetes (GOV.UK 2018)
• Supporting Treatment and Appropriate Medication in Paediatrics (STAMP) (NHS England)
• Stopping Overmedication of People With a Learning Disability, Autism or Both (STOMP) (NHS England)
• Learning disability: care and support of people growing older (NICE NG96)
• Mental health problems in people with learning disabilities: prevention, assessment and management (NICE NG54)
• Learning disability: care and support of people growing older NICE QS187
• Learning disability: identifying and managing mental health problems NICE QS142
• Learning disability: behaviour that challenges NICE QS101
• Advice and support guides including hospital passport (Mencap)
• Equal Healthcare is a basic right (Mencap)
• SCIE Concept of a strengths-based approach under the Care Act 2014