Key learning points:
– Understanding what a learning disability is
– How to effectively shape the care that a person with a learning disability receives
– Tailoring assessment and treatment to the needs of the patient
Numerous strategies1,2 alongside various professional guidance3 have aimed to shape the delivery, accessibility and quality of care that people with learning disabilities receive. Yet, despite the evident push for these people to access support via mainstream services, it appears that significant barriers are present and equal access to care remains a continuing challenge for them.4
Part of the difficulty appears to be that nurses who are not learning disability trained are expected to instinctively identify the needs of these patients, despite being given limited information and education in relation to this. As a result, nurses are often unknowingly misguided and given inaccurate information, which ultimately leads to negative outcomes and nurses feeling
overwhelmed or unskilled. Additionally, concerns have been raised that individuals with a learning disability are less likely to seek out or receive the treatment and support required from mainstream services due to negative attitudes and continuing stigma.5
This article explores the learning disabled patient’s journey through care, with the aim of supporting practice nurses to improve their understanding. Simultaneously, equal consideration is given to the importance of the meaningful communication and reasonable adjustments required to engage patients with learning disabilities and improve overall health outcomes.
Understanding learning disability
Learning disability is defined 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’.6 It includes the presence of ‘a significantly reduced ability to understand new or complex information, to learn new skills with a reduced ability to cope independently, which started before adulthood, with a lasting effect on development.’1
The associated symptoms of learning disability are regularly concealed and often intangible to onlookers, and as a result are not granted the same compassion as more physically visible health conditions.7 Diagnostic overshadowing also remains a key factor in health conditions being discounted and people not receiving the treatment that they require when they need it. Even though learning disabled patient are 2.5 times more likely to have a health condition,8 health inequalities remain prevalent. These patients are often refused necessary treatment, not given the information they need in a way that they can understand, and not involved in care decisions, which in some instances has led to preventable death.9
Therefore in order to improve recognition and treatment of physical and mental health in the learning disability population, healthcare professionals have a responsibility to foster communication skills.10 These patients can demand a creative and flexible approach, yet there is no set formula to this communication. Nevertheless, basic nursing skills are a good starting point. Encourage engagement by serving the person and adapting accordingly; to build rapport through active listening, while adopting an open posture, gestural acknowledgement and a non-confrontational approach.
If nurses can reflect on these pressures, emotions, and physical sensations associated with the often deemed ‘simple’ task they request of their clients, will they then become more equipped to meet the needs of these individuals? What’s more, it's good for nurses to remember that ‘people will forget what you said, people will forget what you did, but people will never forget how you made them feel’.11
Think behaviour, think function
Nurses promote wellbeing for all patients and therefore this should still stand when assessing and working with patients whose behaviour may challenge.12 Theorists have discussed and explored the functions of behaviour and concluded that it only has five functions. These are:
– To gain or avoid social attention.
– To gain a tangible (eg, to gain an object such as: a DVD, food or a book).
– To escape/avoid a non-preferred event/activity.
– To escape/avoid a painful/uncomfortable feeling/emotion.
– Boredom – to gain stimulation.
Behaviours often become deep-seated and are then assumed to be unalterable. Even so, it is important that unusual or extensive behaviours should be considered as a potential communication of distress. In a nutshell: for nurse patient interaction to succeed all aspects of communication must be considered, and the nurse must be self-aware, with the commitment to modify their approach accordingly.12 This is also highlighted in the NMC Code that recognises communication skills, equality, diversity and patient dignity. Sadly ‘challenging behaviour’ is just one of the many labels that tend to travel alongside patients with a learning disability. Other unpleasant labels frequently used in practice documentation include manipulative, repetitive, silly, different, manic, vulnerable, LD, aggressive, controlling, average, passive, attention seeker, PD, loud and child-like, to name a few. Therefore professionals are urged to consider the connotations and assumptions associated with the terminology they share, and how this may inadvertently impact upon the patient and the care that they receive. For example, if a patient is attention seeking instead of describing them as an ‘attention seeker’ explain that they require reassurance and social interaction in order to know that their needs will be met.
Who is responsible?
With the introduction of revalidation and a revised nursing code12 there is now greater emphasis and encouragement for all branches of nursing to continuously challenge barriers to care via the sharing of knowledge and experiences, and collaborating across professions. Therefore all professionals are responsible for making changes and are accountable for the changes they or the organisations their employed by choose not to make. What’s more, there is now even greater demand for individualised care, meaningful communication and reasonable adjustments.5,13,14,15
The fact remains that there is much guidance and legislation shaping today’s nursing practice, not to mention the ever topical debate of liability and disparity in relation to patient care. Moreover, in recent years the analysis of healthcare failings11,13,16,17 has called for greater scrutiny of nursing practice, and has indicated the importance of self-awareness and the individual’s responsibility to improve practice. However, what is disregarded is that this can be a daunting brief for those with limited training in learning disability care. In addition, there is the introduction of revalidation this year, which encourages inter-professional development by requesting that nurses consider reflection as a multidisciplinary/group process. Therefore, nurses can develop the skills needed to work with the learning disabled population by inviting learning disability nurses to take part in group reflection. This gives the group the opportunity to share/discuss skills and knowledge in the context of specific practice examples.
Tools and adjustments
Health professionals are legally obliged to adapt their services to prevent disabled individuals from being disadvantaged.15 “This legal duty is anticipatory, meaning that health services should consider in advance the adjustments that people with learning disabilities or autism will need”.14
This meaning that now more than ever there is greater emphasis on modifying services and practice to meet the needs of each individual. Therefore, commitment must be given to evaluating beforehandin regards to whether the current environment further disables the patient and what adjustments are required. These may be thought of in terms of six key areas for specific consideration: preparation, environment, listening, communication, personalisation, and enablement. However, in order for positive changes in occue in services, professionals first need to review their personal practice and reflect on what may be missing. What’s missing in practice is the confidence to use an alternative approach and view failure as an opportunity to learn. Additionally, working in isolation is discouraged with group reflection across professions and the welcoming of personal feedback being a key focus of future collaborative practice.18 Feedback may be gained by organising peer-reviewed practice sessions or by evaluating whether the client’s holistic needs were met.
Specific patient preferences and communication needs are often overlooked despite these being pivotal to both assessing and meeting the client’s specific needs. Professionals can facilitate positive interaction by firstly having an awareness of their own and their patients’ body language and facial expressions. Communication could include visual prompts, pictures, props, drawing, gestures, emphasised facial expressions or simplified explanations, and should always be clear and concise. Secondly, creating an environment that is quiet with minimal distractions is central to success.
Each person with a learning disability is unique, so communication skills cannot be prescribed, but there is some value in various generic approaches. For example, ask open questions and clarify understanding by summarising, and asking the person to show or explain their understanding. Most importantly, nurses shouldn’t be afraid to ask for more information from those who know the patient well, and should consider failure as a chance to develop new approaches.
Ultimately, it is crucial to communicate with the person in a way that is both meaningful and acceptable to them. Overall unsuccessful attempts to innovate have greater value than no attempt of any kind.
Primary care nursing staff are playing an increasingly important role in the delivery of care for individuals with a learning disability. Therefore the assessment of a learning disabled client demands an adaptable and collaborative approach which acknowledges the patient’s unique communication and cognitive styles.19
EasyHealth – easyhealth.org.uk/
Mencap – mencap.org.uk/
NHS Protect – reducingdistress.co.uk/reducingdistress/
Positive Behaviour Support Academy – pbsacademy.org.uk/about-pbsacademy/
1. Department of Health. Valuing People. Department of Health Publications, 2001.
2. Department of Health. Valuing People Now. Department of Health Publications, 2009.
3. Royal College of Nursing. Meeting the Health Needs of People with Learning Disabilities. Royal College of Nursing, 2011.
4. Emerson E, Hatton C. Health inequalities and people with intellectual disabilities. Cambridge University Press, 2013.
5. MacArthur J, Brown M, McKechanie A, Mack S, Hayes M, Fletcher J. Making reasonable and achievable adjustments: the contributions of learning disability liaison nurses in ‘Getting it right’ for people with learning disabilities receiving general hospitals care. Journal of Advanced Nursing 2015;71(7):1552–1566.
6. Mencap. What is a Learning Disability? mencap.org.uk/definition (accessed 18 February 2016).
7. Gates B. Learning Disabilities Toward Inclusion, 6th ed. Elsevier Limited, 2011.
8. Public Health England. Reasonable adjustments. improvinghealthandlives.org.uk/projects/reasonableadjustments (accessed 18 February 2016).
9. Mencap. Death by indifference: 74 deaths and counting, a progress report 5 years on. mencap.org.uk/sites/default/files/documents/Death%20by%20Indifference%20-%2074%20Deaths%20and%20counting.pdf. (accessed 17 February 2016).
10. Haddad M, Gunn J. Fast Facts: Depression, 3rd ed. Health Press, 2011.
11. Angelou M. As quoted in Worth Repeating: More than 5000 classic and contemporary quotes. Kelly B, 2003.
12. Nursing and Midwifery Council. The Code: Professional standards of practice and behaviour for nurses and midwives. Nursing and Midwifery Council, 2015.
13. Francis R. Report of the Mid Staffordshire NHS Foundation Trust Public Inquiry. midstaffspublicinquiry.com/report (accessed 18 February 2016).
14. National Development Team for Inclusion Reasonably Adjusted. Mental Health Services and Support for People with Autism and People with a Learning Disability. NDTI, 2012
15. Legislation. The Equality Act. legislation.gov.uk/ukpga/2010/15/contents (accessed 17 February 2016).
16. Mencap. Death by Indifference. mencap.org.uk/document.asp?id=284 (accessed 17 February 2016).
17. Care Quality Commission. Castlebeck Care Group Services Review. cqc.org.uk/newsandevents/castlebeck.cfm (accessed 17 February 2016).
18. Nursing Midwifery Council. Revalidation. revalidation.nmc.org.uk/what-you-need-to-do/reflective-discussion/ (accessed 18 February 2016).
19. Sikabofori T, Iyer A. ‘Depressive Disorders in People with Intellectual Disabilities’ In Raghavan, R. Anxiety and Depression in People with Intellectual Disabilities Advances in Intervention. Pavillion, 2012.
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