Guidance

Learning disability - applying All Our Health

Updated 22 March 2023

Introduction

This guide is part of All Our Health, a resource which helps health and care, emergency services and the wider public health workforce prevent ill health and promote wellbeing as part of their everyday work. The information below will help frontline workers use their trusted relationships with clients, families and communities to provide the best possible support for people with a learning disability and their families, across an age continuum. We also recommend important actions that managers and staff holding strategic roles can take.

View the full range of All Our Health topics.

Note: in some parts of the world ‘intellectual disability’ is the preferred terminology for learning disability, so if seeking to read more widely, this may be a useful search term.

Why promote learning disability awareness in your work

This All Our Health guide will help all professionals to:

• understand the importance of specific activities and interventions that can affect the wellbeing of people who have a learning disability and their families
• consider resources and services available locally to support individuals and their families to live more independent, healthier lives, for longer
• promote holistic family wellbeing

What a learning disability is

A learning disability is defined by the Department of Health and Social Care (DHSC) (2001) as:

a significantly reduced ability to understand new or complex information, to learn new skills (impaired intelligence), with a reduced ability to cope independently (impaired social functioning), which started before adulthood.

A learning disability is different for everyone. The degree of disability can vary greatly, being classified as mild, moderate, severe or profound. In all cases, a learning disability is a lifelong condition and cannot be cured.

A learning disability is different to a learning difficulty, which is a reduced intellectual ability for a specific form of learning and includes conditions such as dyslexia (reading), dyspraxia (affecting physical co-ordination) and attention deficit hyperactivity disorder (ADHD).  A person with a learning disability may also have one or more learning difficulties.

Additionally, there are a number of conditions and neurological disorders that often involve or cause some type of learning disability, including Down’s syndrome, autism, meningitis, epilepsy or cerebral palsy.

A learning disability is not a physical disability.

Causes of a learning disability

A learning disability is caused by something which affects the development of the brain either before birth, during birth or in early childhood.

Possible causes may include:

• an inherited condition – for example, Fragile X syndrome
• abnormal chromosomes – for example, Down’s syndrome or Turner syndrome
• exposure to environmental toxins or infections and illness during pregnancy
• a very premature birth
• complications during birth, resulting in a lack of oxygen to the baby’s brain
• illness – for example, meningitis or measles; or injury or trauma to the brain in early childhood

Sometimes the cause of a learning disability remains unknown.

The prevalence of learning disabilities in England

There are approximately 1.3 million people with a learning disability in England, including over 950,000 adults aged 18 or over. These figures reflect the most up-to-date data from Mencap, and have been calculated using learning disability prevalence rates from Public Health England (2016) and population data (2020) from the Office for National Statistics (ONS).

The number of people with a learning disability recorded in health and welfare systems is much lower. Those known to learning disability services are likely to be people with a more significant learning disability.

Learning disability, human rights and equality

We all have human rights; children, young people and adults with a learning disability have the same rights to the same opportunities, to live satisfying and valued lives and to be treated with the same dignity and respect, as anyone else.

The Human Rights Act (1998) is the main law protecting human rights in the UK. The act places a clear legal duty on public officials and bodies to ‘respect’ the 16 rights it outlines and to take action to ensure people’s rights are ‘protected’.

The Equality Act (2010) places a statutory duty on employers, healthcare settings and wider society to make reasonable adjustments to ensure equity of access to services for people with a disability, by making changes in their approach or provision.

The Health and Care Act (2022) introduced a requirement that all regulated health and social care service providers ensure their staff receive training on learning disability and autism which is appropriate to the person’s role. 

Health and health inequalities for people with a learning disability

Compared to people without a learning disability, people with a learning disability tend to experience:

• poorer physical health (see the 2021 Learning Disabilities Mortality Review (LeDeR))
• poorer mental health (see the NICE guidelines on mental health problems in people with learning disabilities)
• significant health inequalities (read more on Mencap’s website)

The latest LeDeR (2021) states the median age at death for people with a learning disability is 62 years. This is significantly less than the median age of death of 82.7 years for the general population. LeDeR also reports that 49% of deaths were from an avoidable cause which could have been prevented by good quality healthcare, compared to 22% of deaths for the general population (as reported by ONS).

People with a learning disability are also:

• less likely to be working - in England, 5.1% of adults with a learning disability known to their local councils are in paid employment
• more likely to live in poverty (PDF, 273KB) (31% compared to 18%)
• more likely to experience chronic loneliness (50% compared to around 15 to 30%)^{[footnote 1]}
• more likely to be bullied and discriminated against

Children and young people with a learning disability

In England, almost 68,000 children have a statement of special educational needs (SEN) or an education, health and care (EHC) plan and are identified as having a primary SEN associated with a learning disability. 26% of these children are educated in mainstream schools.

In addition:

• nearly 230,000 children in England identified at a broader level of SEN support have a primary SEN associated with a learning disability
• all forms of SEN associated with learning disabilities are more commonly diagnosed in boys (4.4%) than girls (2.9%)
• children eligible for free school meals or who are living in more deprived neighbourhoods are more likely to have a SEN associated with a learning disability
• higher rates of moderate and severe learning disability are more common among Romany Gypsy children; higher rates of profound multiple learning disabilities are more common among Pakistani and Bangladeshi children
• children with a SEN associated with a learning disability represent 9.2% of all looked after children (under local authority care)

The determinants of health inequities experienced by children with learning disabilities from the British Association of Social Workers (BASW) summarises scientific knowledge about the determinants of health inequities experienced by children with a learning disability in the UK.

As with adults with a learning disability, children and young people may also have additional physical and mental health needs. Family members will play a crucial role in advocating for their loved ones and can serve as a valuable resource for information when working as partners with professionals in health, social care and education.

NHS England has a full workstream committed to the improvement of services for children and young people.

Good services and effective support across the life course

Many people with a learning disability can and do lead rich and full lives. As with the population as a whole, some people with a learning disability are married and have children, some live alone. Some engage in lifelong education, while others work in paid employment. And some have active social lives and pursue broad-ranging recreational activities, while others are less active and involved. For many people with a learning disability, their needs will be the same as those without a learning disability. Others might need more support throughout their life.

Good services will always listen to the people and the populations using them. All services should recognise the expertise of people with a learning disability, value their contribution and make sure they are considered and represented in all matters relating to them.

There are key times in life where the right support, from the right services, can help people who have a learning disability and their families to remain well, independent and reside as valued members in their communities.

For example:

• pregnancy and babyhood
• pre-school
• childhood
• becoming an adult
• family support changing (such as carers aging or dying)
• staying well
• growing older

Where are the opportunities for you to make a difference at an individual, operational and/or strategic level?

What I can do to help

Core principles for professionals include:

• accessing suitable training on learning disability
• networking with the professional learning disability community, including local learning disability nurses
• identifying and proactively adding people with a learning disability (and their carers) on primary and secondary healthcare registers
• anticipating the likely needs of people with a learning disability and making reasonable adjustments
• listening to people with a learning disability, their family and carers
• understanding and adhering to the Mental Capacity Act (2005) at all times
• using hospital passports and health action plans to help ensure that people with a learning disability are well supported
• ensuring inclusivity and consideration to people with a learning disability whose first language is not English through greater awareness and capability building
• co-ordinating care and sharing information

Helpful tips on communicating with a person with a learning disability

People with a learning disability often have associated communication difficulties receiving, retaining and repeating information. They are also more likely to have limited understanding of health information (health literacy) to help them manage their own health and care (for more on this, see the National Institute for Health and Care Research (NIHR) website).

The following tips are helpful to consider when communicating with people with a learning disability and may help to improve their health literacy:

• always speak directly to the person, unless advised not to do so
• use plain English, short sentences and do not use medical jargon and acronyms
• ask if they have a hospital passport - this may include information on their preferred method of communicating with others
• use visual aids such as photographs, objects or gestures to support your words, and make use of supplementary NHS YouTube videos
• ask if they use any alternative forms of communication, such as Makaton (signs and speech), Talking Mats (symbols), Beyond Words (wordless picture books) or symbol-based images, like Widgit - if you are not able to use their tools, ask if they have someone with them who can assist
• when writing, make it accessible to the individual - this may mean using larger, easy to read text to explain what you wish to say and easy read appointment letters (the NIHR website has advice on accessible health information)
• talk and listen to the person’s carer, friend or supporting professional, without excluding the individual
• give the person time (ideally 7 seconds) to process what you have said before they respond
• check understanding, both yours and the person’s, by asking open questions
• pay attention to body language and facial expressions
• consider the environment - noisy or loud environments with lots of activity are not conducive to effective communication
• show any equipment or machines that might be used and explain any noise that the machines may make to pre-empt any problems
• offer to follow up verbal discussions with a written note or a voice or video recording

When things get difficult

As with all members of society, people with a learning disability can experience episodes that cause them to become upset. What we know is that behaviour which becomes challenging always happens for a reason. This may be the person’s only way of communicating an unmet need, including, for example, pain. Many hospitals have learning disability liaison nurses who can help you. Positive Behaviour Support (PBS) is a person-centred approach for providing long-term behavioural support to people with a learning disability and other conditions such as autism and mental illness. See also Learning disability: behaviour that challenges from NICE.

It is also important to ensure that physical illnesses do not go undiagnosed (diagnostic overshadowing) as a result of focussing on the person’s learning disability to the exclusion of other possible health problems. An annual health check should be undertaken to address this issue (see the NICE guidance mentioned above).

Taking action

If you’re a frontline professional

Frontline professionals can have an impact by:

• valuing people with a learning disability as individuals with unique strengths and needs
• using asset and values-based approaches which focus on utilising existing strengths to build therapeutic relationships (see Evidence for strengths and asset-based outcomes from NICE)
• knowing where to direct people for identification of needs, intervention and support and when additional support is needed
• involving the individual and family members in all treatment planning, making the care they receive personalised and ensuring their health literacy is accounted for
• making reasonable adjustments to the care and treatment the person receives
• ensuring the 5 key principles of the Mental Capacity Act (2005) are followed at all times
• providing advocacy and support and using different communication tools and technology to support effective communication (see earlier section on helpful communication tips)
• where appropriate, assessing physical and mental health, wider determinants of health and wellbeing and making appropriate referrals
• promoting healthy lifestyles, health screening programmes, annual health checks and Positive Behaviour Support (PBS)
• considering the needs of carers and knowing where to direct them to get support
• undertaking the Oliver McGowan mandatory training on learning disability and autism

If you’re a team leader or manager

Team leaders and managers can have an impact by:

• becoming learning disability aware and supporting changing attitudes to valuing individuals, as people first
• collecting information about the experiences of people who use your service and using this information to make service improvements
• making sure reasonable adjustments are provided in your service
• making sure all care is personalised and co-produced with any person with a learning disability or, when appropriate, their families or carers
• challenging stigma and discrimination of people with a learning disability
• promoting acceptance of recognised tools to support physical health such as hospital passports and health action plans
• supporting the uptake of flu and COVID-19 vaccinations, health screening programmes, annual health checks and the creation of health action plans
• supporting access to services, such as with easy read invitation letters and digital solutions
• where appropriate, working in a multidisciplinary way with other professionals to plan, develop and deliver effective services
• where appropriate, working in co-production with local self-advocates and self-advocacy groups to plan, develop and deliver effective services
• sharing, disseminating and celebrating good practice

If you’re a senior or strategic leader

Strategic leads can have an impact by:

• understanding the local population and how well existing services are meeting existing needs
• developing, promoting and accessing learning disability awareness training and the positive impact of early intervention
• acting as a role model and challenging cultures where people with a learning disability and their families are not valued
• promoting the use of various flagging systems including the NHS reasonable adjustment flag to identify people with a learning disability across primary and secondary service systems
• developing and validating the accuracy of learning disability registers
• developing accessible clinical pathways to support access to mainstream screening services
• making reasonable adjustments in services and supporting access to services, as part of your delivery of care and support
• promoting community-based support for people with a learning disability, while ensuring that any required hospital admission is necessary, well-planned (where appropriate) and for the shortest time necessary
• promoting a positive, asset-based way of thinking and planning services
• commissioning innovative, creative and evidence-informed solutions to address local health needs
• sharing, disseminating and celebrating good practice

Understanding local needs

There are a range of resources available to help commissioners and health and care professionals to better understand the needs of people with learning disabilities, their families and carers, in order to provide better healthcare.

LeDeR annual reports and the LeDeR website resources provide information about the lives and deaths of people with a learning disability whose deaths have been notified to LeDeR. 

NHS Digital health and care of people with learning disabilities and the related dashboard covers a spectrum of indicators over the last 5 years. The report can be used to compare the health of people with a learning disability across a range of health conditions compared to the general population with data at CCG level.

NHS Digital Quality and Outcomes Framework (QOF) publish data on the GP learning disability registers.

Office for Health Improvement and Disparities (OHID) learning disabilities profiles provide data broken down to upper tier local authority level, region and nationally in England. The profiles enable comparisons of your area with other areas.

PANSI – Projecting Adult Needs and Service Information and POPPI – Projecting Older People Population Information System. Both require registration (free) and have a section on learning disability; projections are available for populations:

• with moderate or severe learning disability
• with a learning disability living with a parent
• with Down’s syndrome
• with a learning disability presenting challenging behaviour
• with autism spectrum disorder

People with learning disabilities in England provides updates of national statistics and the services and support available to people with learning disabilities and their families.

For statistics about people with autism and a learning disability in inpatient units, this blog by Chris Hatton provides a useful overview.

Measuring impact

There are a range of reasons why it makes sense to measure your impact and demonstrate the value of your contribution. This could be about evaluating, auditing, reflecting on and sharing your work to benefit your colleagues and local people, or help you with your professional development.

Building the right support provides commissioners with a clear framework to develop more community services for people with a learning disability, autism or both, who display behaviour that challenges, including those with a mental health condition.

The health charter for social care providers is designed to support social care providers to tackle some of the health inequalities that people with a learning disability experience, thus improving their health and wellbeing. There is guidance to support the implementation of the charter and a self-assessment tool to enable organisations to measure progress and develop an improvement plan.

The Health Equality Framework (HEF) and commissioning guide is an outcomes framework based on the evidence-based determinants of health inequalities for people with a learning disability. The HEF can be applied to all services with regard to their effectiveness in tackling health inequalities for people with a learning disability.

NICE’s Learning disability: behaviour that challenges (QS101) includes several resources which support measuring impact and improvement.

The learning disability improvement standards for NHS trusts have been developed collaboratively with people and their families to help NHS trusts measure the quality of care they provide to people with a learning disability, autism or both.

The National Development Team for Inclusion (NDTI) annual health check audit tool is designed to support practices, primary care liaison staff, health facilitators and others to improve the uptake and quality of annual health checks and thereby reduce the health inequalities experienced by people with a learning disability.

Further reading, resources and good practice

Advice for people with a learning disability and the public

DHSC’s Better Health Campaign Resource Centre is home to a wide range of tools and resources to support a healthy lifestyle across a range of health topics including eating well, dental health, stopping smoking, physical activity, mental health and screening. It also houses a selection of easy read resources.

The NHS website provides an overview of how to get support for people with a learning disability and family carers.

NHS England has commissioned a short video (Health is Everybody’s Responsibility) to encourage people with a learning disability to check their disability status is captured on their GP record and to get their annual health checks.

Professional resources and tools

The following organisations, guidance and tools provide a range of useful resources on learning disability for health professionals. Click on the links below to access the relevant webpages.

Organisations

General Medical Council

NICE

Royal College of Nursing

Royal College of Psychiatrists

Guidance and tools

Core capabilities framework for supporting people with a learning disability from Skills for Health is relevant to those working in any sector and all staff working across health and social care.

Easy Health publishes easy to read information that health professionals can use to help explain health issues and treatments to their patients with a learning disability.

Improving healthcare access for people with learning disabilities provides guidance for social care staff on how to help people with a learning disability get better access to medical services to improve their health.

The NDTI annual health check resources and guides supports the implementation of health checks for people with a learning disability.

Reasonable adjustments for people with a learning disability is a series of guides on how reasonable adjustments should be made to health services and adjustments to help people with a learning disability to access services.

Relevant reports and reviews

Six Lives: progress report on healthcare for people with learning disabilities demonstrates that more people with learning disabilities have taken up the opportunity of an annual health check to improve their health and enable preventive interventions to stop potential health crises.

Mencap’s Death by Indifference report and follow-up report Death by Indifference: 74 and Counting identify continued institutional discrimination in the NHS and calls for systematic monitoring by the Department of Health and Social Care to ensure that the health needs of people with a learning disability are being met.

LeDeR - learning from lives and deaths is a national service improvement programme funded by the NHS which aims address the health inequalities experienced by people with a learning disability and reduce premature mortality.

A Fair, Supportive Society: Summary Report from the Institute of Health Equity outlines a social determinants of health approach to improving the lives and health of people with a learning disability.

Training resources

Disability Matters provides free e-learning resources for those who work, volunteer or engage with disabled children, young people and their families.

An update on the Oliver McGowan mandatory training in learning disability and autism which resulted from the government’s response to the consultation on learning disability and autism training for health and social care staff in 2019.

Good practice examples

Stopping over medication of people with a learning disability, autism or both (STOMP) is a national project involving many different organisations all helping to stop the overuse of psychotropic medicines which affect how the brain works. 

The Mencap Treat Me Well campaign calls on NHS staff to make reasonable adjustments for people with a learning disability when they are in hospital.

LeDeR uses the information learnt from the LeDeR reviews to improve the health of people with a learning disability and help reduce health inequalities.

1. Gilmore, L and Cuskelly, M. (2014). Vulnerability to loneliness in people with intellectual disability: an explanatory model. Journal of Policy and Practice in Intellectual Disabilities, 2014, 11(3): 192-199. ↩