Making reasonable adjustments to cancer services for people with learning disabilities
Intended for healthcare professionals
CPD    

Making reasonable adjustments to cancer services for people with learning disabilities

Sandra George Primary care learning disability liaison nurse, learning disability service, Devon Partnership NHS Trust, Exeter, England
Rachel Salloway Primary care learning disability liaison nurse, learning disability service, Devon Partnership NHS Trust, Exeter, England
Katy Welsh Professional lead nurse, learning disability service, Devon Partnership NHS Trust, Exeter, England

Why you should read this article:
  • To recognise the legal requirement to provide equal access to cancer services for people with learning disabilities by making reasonable adjustments

  • To identify approaches that can ensure people with learning disabilities who require cancer services receive equitable and timely care

  • To count towards revalidation as part of your 35 hours of CPD, or you may wish to write a reflective account (UK readers)

  • To contribute towards your professional development and local registration renewal requirements (non-UK readers)

People with learning disabilities do not access or engage with proactive cancer screening in line with those without learning disabilities. As a result, they often experience delays in diagnosis and treatment for cancer, leading to suboptimal health outcomes and, in some cases, premature mortality. This article explores how the legal requirement for public bodies to make reasonable adjustments to ensure people with learning disabilities can use their services can have a positive effect on patient outcomes and experience. In cancer services this applies across the patient pathway, from access to screening, assessment, diagnosis, treatment and discharge. The authors use case studies to illustrate how reasonable adjustments can be made for individuals with learning disabilities in accessing cancer care. They also provide readers with the opportunity to reflect on their own practice and explain how to make small, achievable reasonable adjustments in their clinical areas.

Cancer Nursing Practice. doi: 10.7748/cnp.2022.e1806

Peer review

This article has been subject to external double-blind peer review and checked for plagiarism using automated software

Correspondence

katy.welsh@nhs.net

Conflict of interest

None declared

George S, Salloway R, Welsh K (2022) Making reasonable adjustments to cancer services for people with learning disabilities. Cancer Nursing Practice. doi: 10.7748/cnp.2022.e1806

Published online: 10 January 2022

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:

  • Outline factors that affect access to healthcare services for people with learning disabilities, including diagnostic overshadowing and unconscious bias.

  • Consider the role of mental capacity and best interest in healthcare and treatment.

  • Define a reasonable adjustment.

  • Describe the link between the implementation of reasonable adjustments and the difference in outcomes and experience for people with learning disabilities.

  • Begin to formulate an action plan to take back to your clinical area to improve services for people with learning disabilities.

Key points

  • In the UK public bodies including healthcare have a legal duty to make reasonable adjustments to ensure that people with a protected characteristic such as disability can use their services

  • People with a learning disability often experience delays in diagnosis and treatment for cancer as a result of not having reasonable adjustments made to their care

  • Reasonable adjustments may involve small, achievable changes that can make a positive difference for people with learning disabilities during their care journey

  • Healthcare professionals need to be aware of personal bias and not make assumptions about a person’s learning disability that may affect the care they are offered or receive

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).

TIME OUT 1

Outline the additional factors that make it challenging for people with a learning disability to access health services. Some factors to consider may be sensory impairments and anxiety

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).

Box 1.

Tips to avoid diagnostic overshadowing

  • Do not make assumptions about a person’s life. Quality of life is individual to each person

  • As for any other patient, respect confidentiality

  • Talk to the patient directly. If the person does not use verbal language, consider using pictures, photos, symbols or signs to communicate with them

  • Family or carers who know the person well can support you to communicate effectively with them

  • Consider non-verbal communication, such as sounds, body positions, facial gestures and other non-verbal signs that may indicate that the patient has pain, discomfort or is experiencing anxiety

  • Do not automatically attribute any changes in behaviour to the patient’s learning disability. Explore possible physical and/or mental health issues as part of your assessment

  • Consider the physical environment and how you may need to change it to support the patient’s access, comfort and safety

(Blair 2017)

TIME OUT 2

Reflecting on the tips in Box 1, identify if there are any changes you could make in your own clinical practice to avoid the risk of diagnostic overshadowing with patients who have learning disabilities

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).

TIME OUT 3

Think about a previous interaction with a patient who has a learning disability. Spend ten minutes reflecting on the unconscious thoughts you may have had about the patient on first meeting them. Be honest with yourself. The evidence indicates that healthcare professionals exhibit the same levels of implicit bias as the wider population (FitzGerald and Hurst 2017).

Did you make assumptions about the person’s quality of life in terms of their marital status, whether they have children, level of education achieved, employment status or their active contribution to society?

Think about your ability to communicate with the person – did you need to adjust your method of communication? How did you check the person’s understanding or did you direct all your communication towards their companion (carer or family member)?

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.

Box 2.

The Mental Capacity Act 2005: principles

  • The Mental Capacity Act 2005 is the legal framework in England and Wales for acting and making decisions on behalf of individuals who lack the mental capacity to make specific decisions themselves

  • It applies to people aged 16 or over

  • Everyone has the right to make his or her own decisions where they have capacity to do so

  • Professionals should always assume someone has capacity to make a decision, unless it is proven otherwise through a capacity assessment

  • Individuals must be enabled to make a decision themselves. You may provide the person with pictorial information or show them a video to aid understanding

  • Some individuals will make an ‘unwise’ decision in the eyes of their carer or family member. However, they should not be treated as lacking the capacity to make that decision, unless capacity is being called into question

  • Where someone is assessed as lacking capacity to make a specific decision, that decision can be taken for them, but it must be in their best interest. It is usual to include people who know the person well with best interest meetings and discussions

  • The least restrictive options for care and treatment should be provided to someone who lacks capacity, respecting their basic rights and freedoms as far as possible

(Department for Constitutional Affairs 2007)

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).

TIME OUT 4

Reflecting on Case study 1, identify reasonable adjustments/actions that professionals could have taken to improve the outcome and experience for Bill

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:

  • Age.

  • Disability.

  • Gender reassignment.

  • Marriage and civil partnership.

  • Pregnancy and maternity.

  • Race.

  • Religion or belief.

  • Sex.

  • Sexual orientation.

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.

TIME OUT 5

When considering reasonable adjustments:

List five adjustments, such as longer appointments or a quieter waiting area, you could make in your own practice area

Identify how these reasonable adjustments could improve the experience for the person

Reflect on how implementing the reasonable adjustments will improve your practice as a result

Flagging specific requirements on electronic patient record systems

One way of identifying a patient’s specific requirements or reasonable adjustments is to ‘flag’ them on the electronic patient record system. If your clinical area does not have this system in place already, find out how you could implement it. There is already a legal requirement under the Accessible Information Standard Specifications (NHSE 2017) for organisations to identify a patient’s information and communication preferences.

Involving people who know the person well

Some people with learning disabilities will be able to identify and communicate their particular needs and preferences when asked. However, others may find it challenging to communicate or lack capacity to share important information about their needs and will often depend on others to relay this information in their best interest. Therefore, it is important to involve people who know the person well – family members, carers or support staff. Having the support of carers can make the difference between a successful or unsuccessful appointment. Often, the presence of a familiar person who can reassure the patient with learning disabilities during their appointment, test or investigation can improve the experience and outcome for all involved. This may require the clinical area making some adjustments to ‘usual practice’.

Hospital passports

It is also useful to ask if a patient with learning disabilities has a hospital passport. This document is completed by the person and/or their carer and includes important information that may identify specific reasonable adjustments that could assist with their appointment (Mencap 2021c). Hospital passports are available in a variety of formats: written, video or photographic. The hospital passport has been adopted nationally, but may vary between countries and regions. If your acute hospital has a learning disability liaison nurse, you may find it useful to make contact with them to request a copy that is being used in your area.

TIME OUT 6

Reflecting on some of the written information you use in your clinical area, is it easy to understand if you had limited literacy skills? Would you know where to find examples of accessible information? List three websites that promote easy-read information in relation to cancer care

The Accessible Information Standard (NHSE 2016) aims to make sure that people who have a disability, impairment or sensory loss get information that they can access and understand. The standard also aims to ensure that the individual gets the communication support they need from health and care services (NHSE 2017). It is essential that people have information presented to them in a format they can understand or that can be used to help them to understand.

The charity CHANGE (2016) has produced guides and additional training for organisations to support the production of accessible documents for people with a learning disability (Box 3).

Box 3.

Checklist for producing easy-read information

Consider these points when developing easy-read documents:

  • Pictures or photos should be at least 8cm wide or high and of optimal quality. It is best to print the document in colour

  • Always put the picture on the left-hand side of the page with corresponding text next to the picture or photo it relates to

  • Choose a clear, easy-to-read font that is at least 14pt size and add extra space between the lines of text

  • Write your information in short, easy-read sentences. Avoid any challenging words, jargon, abbreviations or symbols

  • Ensure your document does not look too cluttered or has too much information on one page

  • Has your document been checked by people with learning disabilities? Have you used their experience and knowledge to make sure your document is truly accessible?

(Adapted from CHANGE 2016)

The provision of accessible information will be reviewed by the Care Quality Commission (CQC) as part of their routine inspection, in line with the Accessible Information Standard, and evidence of this will need to be provided (CQC 2018).

TIME OUT 7

Do you have any accessible/easy-read information in your clinical workplace/service? If not, develop an easy-read document that you can use in your workplace, for example a clinic appointment letter or service leaflet. How will you check that it is fit for purpose?

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.

TIME OUT 8

Consider how making reasonable adjustments to cancer services for people with learning disabilities relates to The Code: Professional Standards of Practice and Behaviour for Nurses, Midwives and Nursing Associates (NMC 2018) or, for non-UK readers, the requirements of your regulatory body

TIME OUT 9

Now that you have completed the article, reflect on your practice in this area and consider writing a reflective account. See: rcni.com/reflective-account

Case study 1. Bill

Bill (a pseudonym) was a 67-year-old man with learning disabilities who lived in supported housing. He had a sore on his lip that had increased in size over the previous year and was not healing. Bill’s GP suspected mouth cancer and he was referred for a biopsy, but due to a combination of factors there was a delay of 12 months in diagnosis.

In three GP appointments Bill was diagnosed with a cold sore despite the sore’s increasing size and non-response to cold sore treatment. When mouth cancer was suspected, Bill refused to go to hospital for a biopsy. The GP said he had capacity to make that decision and consequently a hospital referral was not made.

Bill was given no accessible information about mouth cancer and what he could expect if it was left untreated. His carers raised concerns with the GP, and the referral was subsequently made and a diagnosis given of mouth cancer.

Bill had an oncology appointment to discuss the diagnosis and treatment needed. He attended with a carer who did not know him well and could not support him to make an informed choice about the proposed treatment. As Bill was refusing to have surgery, the care provider contacted the learning disability nurse for support.

The learning disability nurse, acute liaison learning disability nurse and the independent mental capacity advocate and safeguarding lead worked with Bill, his carers and the oncology team. Bill was given accessible information about the surgery, aftercare, risks and benefits. He was able to make an informed choice to have surgery.

Case study 2. Charlotte

Charlotte (a pseudonym) was a 26-year-old woman with Down’s syndrome, who had been feeling unwell. A home blood test was arranged with the GP surgery. Later on the same day the hospital contacted Charlotte and her family to say that she needed to be admitted for further tests. Subsequently, Charlotte was diagnosed with lymphoblastic leukaemia. Charlotte’s experience of hospital admission and treatments was improved by reasonable adjustments being put in place for her. These included:

  • Charlotte hated the word ‘cancer’ so staff used other ways of telling her what was wrong with her, such as her ‘blood wasn’t working properly’

  • Everything about Charlotte’s care and treatment was discussed with her and her parents using simple and easily understood language, avoiding professional jargon and abbreviations. At each stage, she was given an opportunity to know what was happening next and when her prognosis was palliative. Charlotte’s wishes were respected, for example she did not want to hear the words ‘death or dying’

  • Enough time was given to Charlotte to voice any worries or questions she had about her illness and treatment. She was never made to feel that her worries or questions were unimportant

  • Because Charlotte hated seeing blood the nurses put a bag and purple tinsel over her blood and platelet transfusions. They called it ‘unicorn blood’ because she loved Harry Potter

  • The nurses named her peripherally inserted central catheter and then referred to it using that name: ‘Oh, Penelope’s blocked and playing up again’

  • Charlotte was always treated with the utmost respect by all staff. She was always spoken to directly rather than ‘staff talking over her’ to her parents

  • While in hospital, anything that Charlotte wanted she was given, within reasonable limits. For example, she was given her favourite foods and drinks to tempt her to eat and drink

  • One parent was allowed to stay with Charlotte at all times and, at the end of her life, both parents could stay with her. The rest of the family had opportunities to visit at any time during Charlotte’s stay and she had her own side room. Her and her family’s wishes for her final days were all listened to and acted on by hospital staff

  • Acute and primary care learning disability liaison nurses were involved throughout Charlotte’s stay, along with local hospice staff, to provide additional advice and support

Her parents said: ‘We had the best care throughout Charlotte’s illness and subsequent death that we could ever have wished for and for that we will be eternally grateful to you all’.

Information in this case study was obtained with consent from Charlotte’s family

Further resources

Easy Health offers accessible health information

easyhealth.org.uk

NHS England (2018) Guide to Making Information Accessible for People with a Learning Disability.

www.england.nhs.uk/publication/guide-to-making-information-accessible-for-people-with-a-learning-disability

NHS England (2021) Reasonable Adjustments.

england.nhs.uk/learning-disabilities/improving-health/reasonable-adjustments

Royal College of Nursing (2013) Meeting the Health Needs of People with Learning Disabilities. RCN Guidance for Nursing Staff. Third edition.

rcn.sirsidynix.net.uk/uhtbin/cgisirsi/x/0/0/5?searchdata1=332095{ckey}#

Talking Mats is a communication tool

talkingmats.com

References

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