Key learning points:
- Many people with an intellectual disability have increased,
- complex and possibly unrecognised healthcare needs
- They experience a number of barriers to accessing healthcare
- There are a number of ways that primary care nurses can help identify, facilitate access, and provide appropriate support for this group of people
Statistically, around 2.2% of the population are expected to have an intellectual disability (ID), although prevalence studies indicate a lower rate of just over 1%,1 suggesting that many people with ID go unrecognised.
There is a great deal of confusion about what ID is.2,3 This is partly because of the terminology. In the UK, the term ‘learning disability’ is commonly used, but this refers to people with a specific learning difficulty, such as dyslexia, in many countries outside the UK. To add to the confusion, many people with ID prefer to use the term ‘learning difficulty’.4 This article will use the term ‘intellectual disability’ as this is recognised internationally.
In order to be diagnosed with ID, an individual must meet all of three criteria:
1. Have a significant impairment in their intellectual functioning. In practice this commonly refers to an IQ of 69 or less.
2. Have significant difficulties in adaptive functioning. This would include skills of daily living such as self-care, social relationships, leisure, community use and academic skills such as reading, writing and telling the time.
3. Childhood onset. The difficulties must be present before the age of 18.5
People with ID vary widely in terms of the difficulties they experience with their intellectual and adaptive skills and should not be considered as a homogeneous group.5 There are, however, some issues that are common to many people with ID, which may be helpful for the practice nurse to know. These can be considered under the four main categories that are commonly measured by IQ tests: verbal comprehension, perceptual reasoning; working memory and processing speed.6,7
This refers to the ability to understand and use written and spoken language, to tap into general knowledge and to think about abstract concepts such as time, distance and direction. These skills allow a person to engage in a range of day-to-day conversations and social interactions, follow instructions and understand the needs of others as well as communicating their own needs.
People with ID are likely to need help in all of these areas. This might include:
- Adapting written materials by adding pictures or symbols to make the meaning less abstract.
- Using accessible language – such as short, straightforward sentences – in both writing and speech.
- Using concrete examples or actual items to help explain more abstract concepts.
- Understanding time can be particularly difficult for many people with ID and can result in missed appointments.
This refers to a group of skills that are mainly non-verbal and rely on ‘seeing and doing’. This includes an awareness of details, structure and patterns, visuo-spatial skills, such as those we use when parking a car or packing a suitcase, and non-verbal reasoning. Many of these skills are crucial to our ability to plan, sequence, link and carry out practical activities from making a cup of tea to negotiating busy traffic. People with ID may have difficulty with many of these areas and may need support such as breaking a task down into smaller stages, having a structure or template available to help them sequence activities – for instance, laying out their clothes in the correct order if they have undressed after a health check or using prompts and reminders to move them on to the next step in a sequence.
This reflects the ability to attend to, hold and process information for short periods of time, such as the name of someone we have just met, the time of our next appointment, directions to an unfamiliar place or how often to take medication. This can be a particularly difficult area for many people with ID, resulting in confusion and distress. It can be helpful to break new information down into small chunks, to use cues and prompts (such as pictures) and to repeat information to aid retention. Important information may need to be repeatedly rehearsed until it can be remembered with ease.
This ability varies greatly and reflects how quickly a person can learn and use new information. Individuals can quickly become overloaded if they are presented with a lot of new information at once, particularly if it is complex, abstract and delivered in a setting that is unfamiliar or stressful. It can help to deliver information at a pace that suits the person, even if this might seem unnaturally slow. Allow the person plenty of time to process one piece of information and try to avoid interruptions or distractions.
Health needs of people with an ID
Many people with ID have complex, multiple healthcare needs, both physical and psychological, and they tend to experience polypharmacy. They have more health problems and lower life expectancy compared with the general population. They are at greater risk of some serious health issues, such as specific forms of cancer, and have poorer uptake of health screens.8,9
There are many reasons for the worse health of people with ID, which are outlined by Emerson and colleagues.9 Some of these include their poorer life circumstances, including low incomes, restricted friendships and social relationships,10 and limited access to opportunities that give a sense of meaning and identity, such as parenthood.11 Unfortunately, there is also often a stigma attached to having ID and patients may experience low confidence and self-esteem.12
Factors such as poorer emotion recognition,13 problems understanding abstract concepts and reduced communication skills6,7 may mean that some, but not all, people with ID have greater difficulty recognising and explaining symptoms, such as the type and location of pain.14 This can be exacerbated in supported care where there is a high turnover of staff, as unfamiliar staff may be unable to pick up the non-verbal signs of poor health and ensure that the individual attends primary care services. Access to routine health education and support, such as regular screening for cancer, is also likely to be restricted for people with ID.
While there have been a number of initiatives to increase health screening and make materials more accessible to people with ID, most recently exemplified by NHS England’s promotion of GP health checks, flu jabs and cancer screening,8 research suggests there are still a number of barriers to good health for people with ID.9
What are the ongoing barriers to good health for people with an iD?
One barrier is that an individual might not be identified as having ID until late childhood, into adulthood or at all, particularly if their ID is mild.15,16 This means that targeted healthcare will not be offered to them. Instead they may be seen as awkward and unreliable when they fail to attend appointments or to follow advice, as the healthcare professional does not realise they may be unable to tell the time, follow directions or understand complex information. People with ID may not discuss their difficulties because of embarrassment and experiences of being stigmatised.12
The recognition that the early identification of ID is crucial to maximising the life chances of this group of people has led to the use of screening tools.15,16,17 Commonly used tools, which are valid and reliable in a range of settings, are the Learning Disability Screening Questionnaire15,17 for adults and the Child and Adolescent Intellectual Disability Screening Questionnaire for young people.16
While screening tools do not replace a comprehensive diagnostic assessment, they offer a way of quickly and accurately identifying people who have an increased likelihood of ID and can be prioritised for further assessment and appropriate adjustments in their support and healthcare.
What can the practice nurse do to help?
The practice nurse can do a range of things to help improve the care of people with ID. At an individual level, the patient wants to be seen as a person, and not in terms of their ID. Many people with ID will have a range of difficulties that make it harder for them to express their needs, describe their symptoms and recall information that is needed to assess their health. Some may find it hard to attend to, remember, process, understand and act on health information that is given to them. Patients may avoid, minimise or deny their difficulties because of embarrassment or fear of stigma. Using some of the strategies outlined previously may help reduce the impact of these difficulties.
At a wider level, consider introducing screening in your practice to help identify individuals who have an unrecognised ID in order to facilitate access. Ensure your materials are accessible to people with ID and explore ways to link with local ID support services to introduce systems that will help you to gather the health-related information you need and promote attendance at health checks. Share your knowledge, experience and examples of good practice with colleagues. Invite people with ID to share their experiences with you in order to make your service more user friendly, and continue to educate yourself about the needs of people with ID.
1. Maulik PK, Mascarenhas MN, Mathers CD, Dua T, Saxena S. Prevalence of intellectual disability. Research in Developmental Disabilities 2011;32(2):419-36.
2. McKenzie K, Matheson E, Patrick S, Paxton D, Murray GC. An evaluation of the impact of a one day training course on the knowledge of health, day care and social care staff working in learning disability services. Journal of Intellectual Disabilities 2000;4(2):153-56.
3. Rae H, McKenzie K, Murray GC. Teaching staff knowledge, attributions and confidence in relation to working with children with an intellectual disability and challenging behaviour. British Journal of Learning Disabilities 2011;39:295-301.
4. British Institute of Learning Disabilities. Understanding the nature and characteristics of learning disability. bild.org.uk/EasySiteWeb/GatewayLink.aspx?alId=3961 (accessed 15 September 2016).
5. British Psychological Society. Learning Disability: Definitions and Contexts. BPS, 2001.
6. McKenzie K, Murray GC. The role of intellectual assessment in learning disability services. Learning Disability Practice 2002;5(1):32-38.
7. Williams T, McKenzie K, McKenzie A. Training care staff about the concept of Learning Disability. Learning Disability Practice 2009;12(5):34-37.
8. NHS England. Health and high quality care for all, now and for future generations. england.nhs.uk/learningdisabilities/improving-health/ 1 (accessed 15 September 2016).
9. Emerson E, Baines S, Allerton L, Welch V. Health Inequalities & People with Learning Disabilities in the UK. Department of Health, 2011. improvinghealthandlives.org.uk/securefiles/160728_1820//IHaL%202011-09%20HealthInequality2011.pdf (accessed 15 September 2016).
10. Sullivan F, Bowden K, McKenzie K, Quayle E. The Close Relationships of People with Intellectual Disabilities. Journal of Applied Research in Intellectual Disabilities 2016;29(2):172-84.
11. Shewan L, Crawley R, McKenzie K, Quayle E. A qualitative exploration of the identities of parents with a learning disability. British Journal of Learning Disabilities 2014;42(1):17-24.
12. Paterson L, McKenzie K, Lindsay WR. Stigma, Social Comparison and Self-Esteem in Adults with an Intellectual Disability. Journal of Applied Research in Intellectual Disabilities2011;25(2):166-76.
13. Scotland J, McKenzie K, Cossar J, Murray AL, Michie A. Recognition of facial expressions of emotion by adults with intellectual disability: is there evidence for the emotion specificity hypothesis? Research in Developmental Disabilities 2016;48:69-78.
14. McKenzie K, Purcell A, Smith M. The reported expression of pain and distress by people with a learning disability. Journal of Clinical Nursing 2012;22:(13-14),1833-42.
15. McKenzie K, Paxton D. Promoting access to services: the development of a new screening tool. Learning Disability Practice 2006;9(6):17-21.
16. McKenzie K, Paxton D, Murray GC, Milanesi P, Murray AL. The evaluation of a screening tool for children with an intellectual disability. Research in Developmental Disabilities 2012;33:1068-1075.
17. McKenzie K, Michie A, Murray AL, Hales C. Screening for offenders with an intellectual disability: the validity of the Learning Disability Screening Questionnaire. Research in Developmental Disabilities 2012;33: 791-95.