Aims and intended learning outcomes

The aim of this article is to introduce nurses to the legal requirement to make reasonable adjustments to cancer services for people with learning disabilities. It aims to enable them to explore where barriers to access may exist for people with learning disabilities in their clinical areas and consider the implementation of possible solutions to ensure optimal person-centred care.

After reading this article and completing the time out activities, you should be able to:

Introduction

There is a plethora of evidence to suggest that people with learning disabilities have suboptimal access to cancer screening in the UK compared with those without learning disabilities (Osborn et al 2012). Despite this evidence of healthcare inequalities, people with learning disabilities are still dying prematurely (Mencap 2012).

People with learning disabilities are still less likely to die from cancer compared with the general population: 10% for men and 12% for women with a learning disability in 2020 compared with 31% and 27% in the general population respectively (NHS England (NHSE) 2021). However, of the deaths of people with learning disabilities reviewed by the Learning Disabilities Mortality Review (LeDeR) programme, 7% may have resulted from a lack of access to cancer screening and other gaps in service provision (Heslop et al 2019a).

Health inequalities for people with learning disabilities continue to persist. However, the drive to close the gap in health inequalities is evident in the NHS Long Term Plan (NHSE 2019), with service improvements set out to improve equity and outcomes in local communities.

Access to healthcare services for people with learning disabilities

Mencap (2021a) defines 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. 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.’

A learning disability is a lifelong condition with the age of onset before adulthood (during the developmental period) as opposed to an acquired brain injury in adulthood that affects cognition (NHS 2018).

In comparison with a learning disability, a learning difficulty does not affect intellect. People with dyslexia, attention deficit hyperactivity disorder or dyscalculia have learning difficulties. Of course, some individuals with learning disabilities may also have learning difficulties (Mencap 2021a).

Taking into account the definition of learning disability, the communication needs of people with a learning disability are important. A person’s communication needs should be identified early. All organisations that provide NHS care and/or publicly funded adult social care are legally required to follow the Accessible Information Standard (NHSE 2016, 2017), which sets out how they should identify, record, flag, share and meet the information and communication support needs of people with a disability, impairment or sensory loss. This not only encompasses appointment letters, but also accessible information about services and any tests or treatments the person may be offered.

Some people with learning disabilities may also have challenges expressing themselves. For instance, a person with no verbal communication may express pain by refusing to eat or by banging their head. Often, the inability to communicate has led to individuals being labelled as ‘challenging’ and their health needs ignored and/or overlooked (Public Health England (PHE) 2017a).

In addition to a learning disability, a person may also have a sensory impairment. Adults with learning disabilities are ten times more likely to be blind or partially sighted than the general population. An estimated 42,000 adults with learning disabilities in the UK, including 31,000 known to statutory services, are blind or partially sighted (Royal College of Ophthalmologists 2015).

It is estimated that 40% of people with learning disabilities have a hearing impairment (Emerson et al 2012), with an increased prevalence in individuals who have Down’s syndrome as a result of their aural anatomy and pathology (Mills 2018). Hearing loss affects communication and must also be considered when making appointments and discussing treatments with the person.

Autism is not a learning disability. However, up to 50% of people with learning disabilities may also have an autism spectrum disorder (ASD) (Mencap 2021b). People with an ASD can also find processing sensory information challenging in healthcare settings and situations for a number of reasons. Giving someone too much information at once or having music playing in the waiting area may be challenging for some individuals. It is important to understand how to make the experience less challenging for the person by identifying small changes to the environment or reasonable adjustments required (National Autistic Society 2020).

People with learning disabilities may not only experience challenges accessing health services for cancer screening and diagnosis, but also throughout their patient journey, including possible delays with treatment and post-operative care and support (Mencap 2012).

Diagnostic overshadowing

Diagnostic overshadowing is increasingly recognised to contribute to the health inequalities experienced by people with learning disabilities (Shefer et al 2014). Diagnostic overshadowing refers to symptoms arising from physical or mental health issues being misattributed to an individual’s learning disability, leading to delayed diagnosis and treatment (Ali et al 2013).

Diagnostic overshadowing, lack of reasonable adjustments and assumptions about their ability or willingness to tolerate tests are some reasons that people with a learning disability who have cancer are diagnosed late, as identified in the 2020-21 LeDeR Action from Learning report (NHSE 2021). As a result, healthcare professionals must listen more closely to families and carers because they will have potentially lifesaving information.

Blair (2017) expands on the importance of ensuring that health issues are not overlooked in people with learning disabilities and identifies important factors for healthcare professionals to consider (Box 1).

Unconscious bias

Unconscious bias, also known as implicit bias, describes the attitudes and stereotypes that people unconsciously attribute to another person or group of people that affect how they understand and engage with that person or group (Reiners 2021).

People with learning disabilities experience healthcare disparities, including delayed diagnoses. Evidence suggests that these disparities can arise from assumptions that healthcare professionals make about the lives and values of people with disability, which has a direct effect on patient care (Oxtoby 2020).

The first step in addressing unconscious bias is recognising that it happens. Once identified, healthcare professionals can be educated to be aware of this type of bias and actively reflect on their own assumptions, thoughts and beliefs about people with learning disabilities (Kapur 2015, Oxtoby 2020).

Mental capacity and best interest

People with learning disabilities may lack capacity in relation to the care and treatment being proposed. In these cases, the Mental Capacity Act 2005 should be followed, including the assessment of capacity and best interest process for individuals lacking capacity (Box 2). The act applies to England and Wales, with separate capacity legislation in Scotland and Northern Ireland.

Case study 1 explores issues relating to mental capacity that resulted in delays to cancer diagnosis and treatment. It is evident that the mental capacity assessment process (Box 2) was not followed. Diagnostic and treatment delays have also been widely documented in the LeDeR programme reports (Heslop et al 2019a, 2021).

When clinicians think about a diagnosis of cancer for a patient with learning disabilities, it is vital that they give the patient every reasonable opportunity to understand the condition and the treatment options available. Only after the work to maximise an individual’s capacity has been undertaken can their capacity be determined accurately. In Bill’s case, this did not happen and resulted in delayed care and treatment.

If an individual is assessed as lacking capacity about their diagnosis and a decision about treatment options is required, the best interest process must be followed. If the decision involves ‘serious medical treatment’, such as chemotherapy or surgery for cancer and the individual has no family or friends who may be consulted, you may need to involve an independent mental capacity advocate (IMCA). An IMCA represents and supports the person who lacks capacity and will provide information to ensure the final decision is in the person’s best interest. It is equally important to record when ‘serious medical treatment’ has been discussed but is thought not to be in the person’s best interest (Department for Constitutional Affairs 2007).

Reasonable adjustments

The Equality Act 2010 sets out a legal duty for all public bodies including healthcare to make ‘reasonable adjustments’ to ensure that people with a ‘protected characteristic’ can use their services. The nine protected characteristics are:

The act requires public bodies to treat people with a protected characteristic fairly and equally, also referred to as the Equality Duty (Government Equalities Office 2011). The act applies to England, Scotland and Wales, with the Disability Discrimination Act 1995 applying in Northern Ireland.

A reasonable adjustment may include making appointments longer for patients, adapting waiting areas to accommodate those who use wheelchairs or providing information about care and treatment in an accessible format. In relation to people with learning disabilities, reasonable adjustments can result in this group of individuals receiving better healthcare and living longer (PHE 2017b).

Nurses are required to support people to access relevant health and social care, to treat people as individuals and to ensure that their needs are recognised, assessed and responded to (Nursing and Midwifery Council (NMC) 2018). Consideration of any reasonable adjustments the person needs will inform holistic care plans and treatment, ensuring that personalised care is given throughout the process.

Some reasonable adjustments require changes to be made at a strategic or organisational level, such as ensuring accessible information about health conditions is easily available. This ensures that the adjustments are available to all disabled people and embedded in the health and social care system (Heslop et al 2019b). However, reasonable adjustments are not ‘one size fits all’ and some individuals require bespoke adjustments to meet their needs. For example, offering a longer appointment may not be enough on its own and the time of day of the appointment may also need to be considered. Not all reasonable adjustments require money or additional resources: sometimes, thinking ‘outside of the box’ and being creative is all that is required, as Case study 2 illustrates.

In your clinical area, it would be important to establish whether your next patient has any specific requirements or need for reasonable adjustments to be made before their appointment. This information may be evident in the referral letter, the person may already be ‘flagged’ on the electronic patient record system as having a learning disability or they may bring with them a hospital passport that will give you more details about them and how they like to be cared for and treated. You may also find it useful to speak to the person and their family or carers to identify any changes you need to make to ensure the appointment is successful.

Conclusion

People with learning disabilities continue to experience healthcare inequalities, do not access cancer screening as often as their peers who do not have learning disabilities and are still dying prematurely. Nurses are instrumental in ensuring that the specific needs of patients with learning disabilities are identified in line with the Equality Act 2010, including any reasonable adjustments.

Nurses from all clinical areas will encounter individuals with learning disabilities, some of whom are likely to have challenges accessing cancer services. An increased awareness of the importance of reasonable adjustments and the ability and confidence to identify and implement small changes will result in an improved experience of care and treatment for the person, contributing to more successful appointments and better health outcomes.