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Nursing guide for supporting people with learning disabilities

Within this guide, you will find a range of topics on how to support people with learning disabilities to access high-quality health care and regular screening.  

From making reasonable adjustments to enhancing communication skills and understanding of mental capacity, we signpost you to the most up-to-date resources available. 

What is a learning disability? 

A learning disability is a significant intellectual impairment that can affect someone their whole life. Often people who have a learning disability will need support to live independently.  

They may also have difficulties with everyday activities, for example, household tasks, socialising or managing money. However, with the right support many people with learning disabilities can live and work independently.  

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 others (Mencap). 

The intellectual impairment needs to have started before the age of 18 to be considered a learning disability, reflecting that it has affected formative years.

This resource was developed following a literature review which highlighted a lack of evidence-based guidance on the holistic management of a patient with a learning disability. Additionally, information on this topic proved difficult to find. 

To ensure any resources produced were relevant, the GPN forum undertook a survey to identify key areas where further training and education were required. The survey revealed that 232 out of 285 nurses felt that they did not currently have the knowledge and skills to meet the needs of patients with a learning disability. 

Some 49% or respondents did not know how to contact the local learning disability service and 65% had not received any learning disability training or education. Additional information from the survey indicated that health care professionals wanted access to resources where they could find all the required information easily in one place.

Approximately 1.5 million people in the UK have a learning disability. The estimated prevalence of autistic spectrum conditions in adults is about 1.1% of the general population. 

Autistic spectrum conditions are not learning disabilities; however, approximately 20-30% of people with a learning disability also have autism, and people with autism (PDF) are more likely to experience mental health problems. 

It is widely reported that people with a learning disability experience significant health inequality, including premature and avoidable mortality. At the same time, many people with a learning disability have greater health needs than the general population. For example, they are more likely to experience mental ill health and are more prone to long-term health problems, epilepsy and physical and sensory disabilities. 

The Learning Disability Mortality Reviews highlight that people with learning disabilities face huge health inequalities and die 20-30 years earlier than those without learning disabilities. 

Health inequalities are a result of multiple factors, including:

  • biological and genetic causes
  • diet and lifestyle
  • socio-economic status
  • access to health care
  • communication
  • diagnostic overshadowing.

A health professional may not see beyond the behaviour itself and attribute the reason for this behaviour to be associated with learning disabilities. This can mean they do not explore potential other causes, such as tooth pain. 

It is natural for health and social care practitioners to assume the simplest answer is probably the right answer. However, nurses should always explore things further and check if their decisions are biased by the person having learning disabilities. 

Promoting health equality for all

There are several initiatives to support people with learning disabilities to have health equality. These include:

  • annual health checks at the GP surgery
  • a GP learning disability register
  • learning disability nursing GP liaison roles
  • learning disability nursing hospital liaison roles.

Useful resources

Learning disability and autism feature significantly in the NHS Long Term Plan. This aims to improve people’s health by ensuring they receive timely and appropriate health checks and improve awareness and understanding across the NHS.  

Research indicates that annual health checks help identify otherwise unmet needs and improve long-term conditions management. In England, 75.2% of people with a learning disability had a ‘Learning Disability Health Check’ in 2020-21, an increase from 56.3% in 2016-17. 

It is vital to improve access to, and equality of, care across health and social services for this group. This includes earlier detection and management of physical and mental health conditions, as well as timely and effective treatment for more urgent and serious medical conditions (Hemm et al, 2015).  

Annual health checks for people with learning disabilities should be offered by GP services across the UK and can be an essential approach to the early identification of health needs.  

On the Registered Care Providers Association (RCPA) website you will find some resources for helping individuals access good quality annual health checks. They are underpinned by 10 Principles upon which people who have learning disabilities would like to be treated.  

Useful resources 

People with learning disabilities should expect the same respect and protection of their human rights as anybody else, although this does not always happen.  

Human rights are a series of moral principles or norms that describe certain standards of human behaviour. They are principally concerned with respect, fairness, equality, dignity and autonomy for all.  

The UK’s commitment to respecting and protecting human rights is rooted in the 1953 European Convention of Human Rights (ECHR). The UK Human Rights Act (1988) requires public bodies to act in ways compatible with the ECHR. This means that public authorities, including providers of health care, must refrain from breaching human rights and take proactive steps to protect people from human rights abuses. 

Specific rights often mentioned, where people with a learning disability have a poor experience of health care services, typically relate to:

  • the right to life
  • the right to freedom from torture and inhuman or degrading treatment
  • the right to liberty and security
  • respect for private and family life
  • protection from discrimination.

Reasonable adjustments for health and social care providers

Despite international human rights declarations, conventions, treaties and domestic legislation, people with a learning disability often continue to have high levels of undetected and unmet health needs. They may experience difficulties in accessing health care in the first place. If access is achieved, they may also receive a poorer service than other members of society. 

In 2009 the UK government signed the UN’s Convention on the Rights of Persons with Disabilities. This set out what is required to ensure disabled people’s rights are respected, protected and fulfilled. Although not part of UK domestic law, it provides insight into how the rights enshrined in the Human Rights Act should be upheld for people with disabilities and makes clear that: ‘States should recognise that people with disabilities have the right to the highest attainable standard of health without discrimination on the basis of disability’.

People with learning disabilities should be able to access all health and care services and be treated equally. Health care professionals have a legal responsibility to provide support and reasonable adjustments to meet the needs of people with a learning disability.

Reasonable adjustments are a legal requirement under the Equality Act (2010) to make sure health services are accessible to all disabled people. They are adjustments that can make a big difference for people with learning disabilities when they attend health care appointments. 

A reasonable adjustment can be making appointments longer, offering appointments at the start or end of a clinic, providing a quiet area for someone to sit and wait, or seeing someone at home. It is important to consider reasonable adjustments on an individual level and to find out what adjustments each person may need to promote equity of access and outcomes. The definition of “reasonable” is vague and services would need to evidence why an adjustment was “unreasonable” if they do not make the adjustments an individual needs.

Read the NHS Improvement publication The Learning Disability Improvement Standards for NHS Trusts (PDF) to read more about the standards that trusts are expected to meet to deliver high-quality services for people with learning disabilities, autism or both.

Reasonable Adjustment Digital Flag

In 2024 the NHS rolled out the Reasonable Adjustment Digital Flag – helping it to become a part of standard approach to care and treatment for all people with disabilities. Access free staff training to learn how the flag can be used to address some of the significant health inequalities experienced by people living with a disability or impairment. Watch a film with Dr Hannah Brown and Paul James about what reasonable adjustments are and the type of adjustments people with a learning disability and autism may need.

Useful resources

The General Medical Council has produced a video that explores the patient experience of attending a hospital or general practice when they have a learning disability and why being healthy is important.  

You may also find the feedback in the images below useful when it comes to understanding patient perspectives. These have been collected by Ace (Anglia)/ Peer Educators when talking to people with learning disabilities and/or ASD about the importance of attending annual health checks. 

Effective and ineffective health adjustments for people with learning disabilities and autistic people

Feedback from people with learning disabilities. What does help them.

Feedback from people with learning disabilities. What does not help them.

Mental health problems for people with learning disabilities are often overlooked and can be hard to diagnose. For this reason, there is a lack of clarity about how common mental health problems are for people with learning disabilities. 

One study has suggested this may be as high as 54 per cent (Cooper et al, 2007), and children with learning disabilities can be up to 4.5 times more likely to have mental health needs (Emerson et al, 2007). 

People with learning disabilities often experience more risk factors to mental illness, such as: 

  • unemployment 
  • low socio-economic status 
  • limited social networks 
  • low levels of activity 
  • lifelong conditions 
  • past experiences of trauma and abuse 
  • biological factors 
  • limited coping skills. 

People may not have the communication abilities to describe their symptoms. Presentations that may be indicative of a mental health problem can be attributed as part of their learning disability. There can be concerns about the labels that people with learning disabilities have, and adding mental illness labels may be seen as a negative thing. Often diagnosis will rely on people who know the person well to identify changes in presentation. 

Talking therapies, like Cognitive Behaviour Therapy (CBT), can be effective in treating mental health problems for people with learning disabilities, but they will often need a significant amount of adaptation to simplify the language used and the cognitive processes requires. Behavioural interventions, such as behaviour activation, can be effective too if designed around the person's needs. 

There can sometimes be conflict between mental health and learning disability services regarding which service is best positioned to meet the mental health needs of people with learning disabilities. The Green Light Toolkit is a recognised tool for auditing service support for people with learning disabilities and mental health needs. 

References

  • Cooper, S.A., Smiley, E., Morrison, J., Williamson, A., & Allan, L. (2007). Mental ill-health in adults with intellectual disabilities: Prevalence and associated factors. The British Journal of Psychiatry, 190, 27–35. 
  • Emerson, E., & Hatton, C. (2007). Mental health of children and adolescents with intellectual disabilities in Britain. The British Journal of Psychiatry, 191(6), 493–499. 

Useful resources

Mental capacity is defined as one’s ability to make informed decisions based on information provided and communicate the decision made to others. 

It is often wrongly assumed that all people with learning disabilities do not have the mental capacity to make decisions of their own.  

The Mental Capacity Act (2005) lays out 5 principles to be applied in decision-making: 

  1. A person must be assumed to have capacity unless it is established that he lacks capacity. 
  2. A person is not to be treated as unable to make a decision unless all practicable steps to help him to do so have been taken without success. 
  3. A person is not to be treated as unable to make a decision merely because he makes an unwise decision. 
  4. A decision made under this Act for or on behalf of a person who lacks capacity must be made in his best interests. 
  5. Before the decision is made, it is important to ensure that the purpose for which it is needed cannot be effectively achieved in a way that is less restrictive of the person's rights and freedom. 

It must be assumed that an adult with learning disabilities has capacity until proven otherwise. The fact that a person has a diagnosis of a learning disability does not mean that they lack the capacity to make decisions of their own.

They must be given the information required to make informed decisions, even if they may seem to be unwise decisions. Adults with learning disabilities can be supported to understand information and communicate their choices through the use of reasonable adjustments.

Reasonable adjustments to aid better understanding and communication can include:

  • use of pictures
  • use simple words 
  • avoid the use of jargon
  • illustrations and role-plays
  • sign language 
  • involve a family/carer who is familiar with the communication needs of the person in the process
  • allowing plenty of time to communicate and retain information
  • check understanding by asking questions.

Best Interest Decisions

If, after all attempts have been made and it is found that the adult with learning disabilities lacks the capacity to make informed decisions relating to the intervention required, then a Best Interest Decision can be made by professionals involved in the care provision in partnership with the person’s family and others involved in their support. 

There may be some decisions where best interest cannot be agreed, or the intervention will require the person’s liberty to be deprived. These decisions may need to be referred to the Court of Protection. This should be discussed with senior management and involve your local authority.

Useful resources

Restrictive practice is sometimes referred to as ‘restrictive interventions’. This is when someone is made to do something they don’t want to do or when someone is stopped from doing something they want to do.  

Restrictive interventions can include: 

  • seclusion 
  • environmental restraint 
  • physical restraint 
  • medication (sometimes referred to as chemical restraint) 
  • mechanical restraint 
  • psychological restraint. 

Restrictive interventions may be overused for people with learning disabilities, It is acknowledged in some situations where managing risk and maintaining safety, restrictive interventions may need to be used. However, as restrictions will be acting against people’s wishes and could potentially be against their human rights we need to avoid the use of restrictive interventions where possible. If used it is vital to ensure that any restriction that is part of someone’s planned support underpinned by a personalised assessment and plan and within a clear legal framework. 

There are some guiding principles that should be considered when using any restriction proposed as part of someone’s planned support when deciding whether the restriction is ethical and justifiable.  

For any restriction to be part of someone’s support it must:  

  1. Be necessary to avoid significant harm to the person or others. 
  2. Take account of the emotional effect of the restriction on the person. 
  3. Be proportionate − the level of restriction is a fair response to the risk of harm. 
  4. Be the least restrictive option − no more than necessary and there isn’t another lesser restrictive alternative. 
  5. Be imposed for no longer than necessary. 
  6. Balance the interests of the individual and others. 
  7. Be within the context of a caring, person-centred, adult-to-adult approach. 

In line with the Mental Health Act Code of Practice 2015, all services where restrictive interventions may be used must have in place restrictive intervention reduction programmes which can reduce the incidence of violence and aggression and ensure that alternatives to restrictive interventions are used. 

The Restraint Reduction Network has published an infographic: Six core strategies and human rights. The infographic shows how human rights and the Six Core Strategies enable the culture change necessary in organisations to reduce the use of restrictive practices. 

Useful resources 

In England, respiratory disease and circulatory diseases are the most common immediate cause of death among people with learning disabilities (52%).

This is twice as common compared to people without learning disabilities (25.6%). The review found that bronchial pneumonia is the most common cause of respiratory death. 

Research shows that adults with learning disabilities face numerous barriers to managing long-term conditions. They often experience multiple long-term conditions that may interact with each other and complicate their management, particularly if people require polypharmaceutical interventions. Identification and diagnosis can also be delayed for many reasons including: 

  • People being unable to describe symptoms due to communication needs 
  • Symptoms being experienced differently due to neurological differences 
  • Diagnostic overshadowing 
  • Atypical presentations 
  • Experiencing difficulties in attending health settings, due to the person’s environmental needs and if the persons actions cause concern. 

Useful resources 

The LeDeR report (2020) identified that sepsis was one of the top 6 leading causes of death for people with learning disabilities and that carers needed help, support and training to be able to recognise when someone is acutely deteriorating.

Knowing what normal presentation for each individual is, and having an accurate baseline of physical observations for them is crucial. 

Some carers may benefit from being able to recognise the ‘soft signs’ when people are unwell or deteriorating. The Restore 2 ‘mini’ tool may be helpful for carers and families.  

Useful resources 

Some individuals with a learning disability are more at risk of constipation than the general population. Constipation is one of the five most common long-term health conditions reported in completed LeDeR reviews (23%) and a third of these reviews mention the prescription of laxatives.

This is an important area to explore carefully when undertaking an annual health check, where constipation management should be reviewed to ensure it is being managed appropriately.  

Richard Handley, a 33-year-old man who had Down’s Syndrome, died from complications arising from constipation. Watch this video to learn more about the Richard Handley inquest verdict, which confirmed his death was preventable. 

Useful resources 

Screening inequalities exist among people with a learning disability, and they are less likely to access screening programmes.

For example, cervical screening and breast screening uptake is lower amongst women with a learning disability compared with the general population. Likewise, engagement with bowel screening can be difficult. 

People with a learning disability should access the same screening programmes as everyone else and be supported to make an informed choice about screening programmes that are offered to them. This includes providing information about the risks and benefits of screening in a way that they can understand.

Useful resources

AAA screening

Bowel Screening

Breast Screening

Cervical Screening

Relationships, sex and the use of contraception for people with learning disabilities remains a sensitive and often divisive topic.

A Contraceptive Choices Report (PDF) undertaken by the Open University in 2015 found that few women with learning disabilities make very independent choices about sex and contraception.  

Some are supported to make contraceptive choices by family, friends, advocates and health and social care professionals, whereas other people will make decisions for them. 

Women report using contraception for a variety of reasons, including the prevention of unwanted pregnancy and because they want to delay, or do not want to have, children. Some women use contraception to manage menstruation. 

Useful resources 

STOMP is a national project, backed by the RCN, and involving many different organisations which are helping to stop the overuse of psychotropic medicines. 

STOMP comes following a Public Health England study which found that people with learning disabilities are regularly prescribed psychiatric drugs without a recorded diagnosis. 

Useful resources

Community learning disability services vary across the countries in the way in which they are delivered, but all areas should have access to learning disability specialists working within health and/or social care.

These are usually multi-disciplinary teams that may include:  

  • registered nurses in learning disabilities 
  • psychologists,  
  • psychiatrists 
  • occupational therapists 
  • speech and language therapists 
  • behaviour analysts  
  • other allied health professionals. 

Learning disability services have two functions. They can have a facilitative role in supporting primary and secondary health care. They can also provide specialist adaptive interventions where the support required needs specialist intervention or adjustments that are beyond that which would be reasonably expected. 

These teams usually offer an open referral service where referrals can be made to them directly. Your local general hospital may also have a liaison learning disability nurse working there to support people with learning disabilities.  

They can provide advice on meeting the person's learning disability needs and what reasonable adjustments may be required. They may also support linking with the community learning disability services if required and support planning regarding social care or discharge planning needs.  

It is believed that up to 30% of people in prison have a learning difficulty or disability, and around 7 per cent will have an IQ score below 70. 

The criminal justice system will often try and divert people with learning disabilities away from the criminal justice routes. This is to reflect that often crimes are not committed with criminal intent and health and social care services will be more beneficial than courts and prisons in reducing the risk of reoffending.  

Some prisons have specific learning disability services and employ learning disability nurses. Criminal justice health liaison and diversion schemes are often run by nurses and include support for people with learning disabilities. Some people may be diverted from the criminal justice service to a secure mental health hospital under the Mental Health Act with Ministry of Justice restrictions.  

Standard offence-related interventions are often not suitable for people with learning disabilities. There are some good examples of these interventions being successfully adapted for people with learning disabilities. 

Useful resources 

Some people with learning disabilities may display challenging behaviours. 

These may be: 

  • behaviours that challenge us, because we may not understand what the person is trying to tell us 
  • may cause harm to them, to us or others 
  • can limit a person’s independence and quality of life. 

Positive Behaviour Support (PBS) (PDF) is a framework for supporting people with challenging behaviours that can help understand what the behaviours are for. The approach then helps the person develop more skills in communicating this need, rather than simply trying to stop behaviours from happening. 

At the heart of PBS is a person-centred approach. Interventions are designed to improve independence and quality of life whilst understanding what is important to them. PBS avoids things that people may find aversive and avoids the use of “punishment”, in other words, interventions solely to reduce a behaviour.

Behaviour can be a complex area, and whilst some behaviours have obvious meaning others require a more detailed assessment. This is described as a Functional Behaviour Assessment (PDF) and needs to be carried out by a health professional with a recognised level of training in behavioural science. 

Once the function is fully understood a PBS plan can be carefully developed with the person and their support to develop new skills and avoid situations that raise the need for challenging behaviours to occur. This is done as a multi-elemental intervention that considers a holistic approach to the person and their life. The diagram below highlights the key areas of a PBS plan.

Learning disabilities image

Useful resources

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Page last updated - 22/08/2024

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