The Role of the Physiotherapist in Learning Disabilities: Communication and Health Literacy

This article or area is currently under construction and may only be partially complete. Please come back soon to see the finished work! (9/05/2024)

Original Editor - Michelle Lee Top Contributors - Catherine Speirs, Ting Hui Tan, Idris Al Balushi, Kerry Morris, Ioannis Dimitrios Valmas, Nicola carter, Kim Jackson, Rucha Gadgil, Kirenga Bamurange Liliane, Lauren Lopez, 127.0.0.1, Admin, Chee Wee Tan, Shaimaa Eldib, Ines Musabyemariya, Michelle Lee and WikiSysop

Definition and Diagnostic Criteria for Learning Disabilities

The World Health Organisation (WHO) in 1992 defined a learning disability as ‘‘a condition of arrested or incomplete development of the mind, which is especially characterized by impairment of skills manifested during the developmental period, which contribute to the overall level of intelligence, i.e., cognitive, language, motor, and social abilities’’. However, this definition is outdated and implied the term ‘mental retardation’ which is deemed very offensive by many people today.

The current definition of a learning disability is defined by Valuing People, the 2001 White Paper report on the health and social care of people with learning disabilities.
“A learning disability includes the presence of:

• a significantly reduced ability to understand new or complex information, to learn new skills (impaired intelligence), with;
• a reduced ability to cope independently (impaired social functioning);
• which started before adulthood, with a lasting effect on development.”

The terms used to describe a person with a learning disability has been changing since the 1970s, from people with mental sub-normality to mental handicap to eventually learning disability in the 1990s. In other countries such as the United States (US), the terms ‘intellectual disability’ and ‘mental retardation’ are used instead. Do note that in the US, the term learning disability is used to describe specific learning difficulties such as dyslexia, dyspraxia and dyscalculia.

Internationally, three criteria have to be met before a learning disability can be identified or diagnosed:

1. Intellectual impairment (IQ<70);
2. Social or adaptive dysfunction combined with IQ; and
3. Early onset.

Watch the video below to know more about the meaning of learning disabilities:

Learning Disability Compared to Learning Difficulty

As mentioned earlier, different terminologies are used in different countries. It is important not to confuse learning disability with learning difficulty. In the UK, specific learning difficulties refers to conditions such as dyslexia, dyspraxia/developmental coordination disorder, dyscalculia and attention deficit hyperactivity disorder (ADHD).

• Dyslexia is a difficulty that affects 10% of the population. It affects the way a person processes information, thus they may have difficulty with memory, organisation and sequencing.
• Dyspraxia is a disorder that affects fine and gross motor skills in children and adults.
• Dyscalculia is a difficulty understanding maths concepts and symbols.
• ADHD is a disorder that affects attention. A person with ADHD may be restless, inattentive, impulsive, erratic and have inappropriate, unpredictable behaviour. They may appear unintentionally aggressive.

Specific learning difficulties affect the way information is learned and processed. It is a neurological condition rather than a psychological condition and it does not affect intelligence. A student may be diagnosed with a learning difficulty if there is a big gap between achievement and ability or there is lack of achievement for age and ability.

Prevalence and Demographics of Learning Disabilities

Global: One-fifth of the estimated global total population (110-190 million people) experience significant disabilities. Globally, one in 160 children has an autism spectrum disorder (ASD). 1991 prevalence estimates for children seven to ten years old are that two in 1000 children are identified with cerebral palsy and four in 1000 with moderate to profound intellectual disability (IQ<50).
Europe: In the European Union (15 countries), 1.1 to 1.5 million people have a severe learning disabilities and 2.3 to 2.7 million people have a mild learning disability.

United Kingdom: 1.5 million people in the UK are thought to have a learning disability.
England: In 2011, it was estimated that there were 1,191,000 people have learning disabilities. This includes 905,00 adults with learning disabilities, of whom, 189,000 were known to learning disability services.
Wales: In 2008-2009, 4,493 health checks were carried out in Wales, findings shown that 41% of the estimated 11,046 people aged 16 years and it is estimated that 43% of people aged 18 years and over and have a learning disability.

Northern Ireland: In 2009, it was reported that there were 27,000 people in Northern Ireland with a learning disability.

Scotland: In 2015, Collection of Learning Disabilities Statistics Scotland data was carried out by the ScotXed Team within the Scottish Government. This aimed to increase standardisation and improve the quality of the data. In 2015, there were 27,218 adults with learning disabilities known to local authorities. This equates to 6.1 people with learning disabilities per 1,000 adults in the general population. 4,617 adults were identified as being on the autism spectrum. 70% of these adults had a learning disability. Figure 2.1 below represents the number of adults known to each local authority.

Figure 2.1 Number of adults with learning disabilities known to local authorities in Scotland in 2015

Different Levels of Learning Disability

The term ‘learning disability’ is a very broad description for this group of individuals, with the threshold set at an Intelligence Quotient (IQ) of below 70 in the United Kingdom (UK). As such, terms such as profound, severe, moderate and mild are used in the UK to describe the different severity and levels of need which these individuals may have.
Profound: Individuals with an IQ score under 20, with severely limited understanding. They have difficulty communicating, require support with mobility and may need support with their behaviour. They may have multiple disabilities such as visual impairments, hearing impairments and difficulty with movement. They may also have extensive health needs, epilepsy and autism.

Severe: Individuals with an IQ score of 20-35. They often use basic words and gestures to communicate their needs. They may need a high level of support with activities of daily living. Some may have additional medical needs and require more support with mobility.

Moderate: Individuals with an IQ score of 35-50. They are able to communicate their day-to-day needs and wishes. They may need some assistance and guidance with their personal care and may require longer time to learn new skills.

Mild: Individuals with an IQ score of 50-70. They are able to hold a conversation and communicate their needs effectively. They are often independent in caring for themselves and have basic reading and writing skills. They may require support to understand complex ideas.

Figure 2.2 below illustrates the number of people with learning disabilities according to level of severity:

Figure 2.2 Estimated number of people with learning disabilities according to level of severity

Factors Resulting in Learning Disability

According to the British Institute for Learning Disabilities in 2011, these are key factors of learning disability:
Chromosomal conditions: Chromosomes make up the genetic blueprint for humans. Everyone has 46 chromosomes in their cells. Abnormality in their chromosomes can result in a learning disability. Such conditions include Down’s Syndrome, Fragile-X syndrome, Williams Syndrome, Wolf-Hirschhorn syndrome and Prader-Willi Syndrome.

Maternal factors: Infections such as Cytomegalovirus and Toxoplasmosis, factors such as diet deficiencies and excessive alcohol consumption during pregnancy can cause learning disability in the unborn child.

Metabolic disorders: A person’s metabolism controls all the chemical reactions in the body. Certain conditions affecting metabolism can result in a learning disability. For example, Phenylketonuria is a disorder that increases the levels of a substance called Phenylalanine in the blood. Phenylalanine is an amino acid which is normally obtained through the diet. If untreated the abnormally high levels of phenylalanine can cause severe learning disabilities.  

Events during birth: A learning disability can occur if a baby’s oxygen supply is disrupted during labour, if a child is born extremely premature or becomes very ill after birth.

Events after birth: Some childhood infections such as encephalitis and meningitis can cause learning disabilities. A severe head injury can also cause a learning disability.

Impact of Learning Disability on the Person

There is a wide spectrum of orthopaedic problems with learning disability, some as a result of the underlying condition and others due to accidents. Individuals with learning disability are exposed to higher risk of injuries more than the general population.

It has been shown in Denmark, US and Australia that adults with learning disability are at higher risk of death compared to general public. These include deaths from accidents, falls, burns, drug toxicity and choking. Finlayson et al. carried out a study to investigate injuries in 511 adults affected by LD in the UK for 12 months and the result showed that they were twice likely to get injured more than others; with falls found to be the most common reason of injury (accounting 55% of all injuries).

In addition, people with learning disability are slower in learning certain skills than others and therefore need more assistance in several aspects of their lives. This is influenced by the severity of the disability which varies from mild to profound as mentioned above.

Researches have indicated the increased prevalence of psychiatric disorders among people with learning disabilities compared to general population. According to WHO, the prevalence of psychiatric and behavioural disorders is at least three times greater in people with learning disability in comparison to unaffected population. These disorders include:

1. Affective (mood) disorders: depressive episodes, recurrent depressive disorder, cyclothymia, manic episodes, bipolar affective disorders and persistent mood disorder.
2. Anxiety, stress related disorders: phobic anxiety disorder, panic disorder, obsessive-compulsive disorder, reaction to severe stress and adjustment disorders.
3. Stress related disorders: The people affected with learning disability are more vulnerable to physical, sexual and emotional abuse, therefore more likely to complain of stress-related disorders.
4. Personality disorders: The prevalence of diagnosed personality disorders in learning disability individuals has varied from 22% to 92%, showing that majority of the learning disability population are presenting with personality disorders such as paranoia, schizoid, antisocial, anxious and dependent personality disorders.
5. Dementia: The prevalence of people with Down Syndrome is in the same level as the general population over the age of 65 but in Down Syndrome, dementia appears in earlier age. This explains the impact of learning disability on occurrence of dementia.

Health Risks

• Coronary heart disease is a leading cause of death in people with learning disabilities (14-20%).
• Respiratory disease is much higher in people with learning disabilities and is thought to be leading cause of death (46-52%).
• The prevalence of dementia is much higher in people with learning disabilities compared to the general population.
• Epilepsy is thought to be 20 times higher in people with learning disabilities. Uncontrolled epilepsy can have a negative effect on a person’s quality of life and mortality.
• Sensory impairments: people with learning disabilities are 8-200 times more likely to have a vision impairment and 40% are reported to have a hearing impairment compared to the general population.
• Physical impairments: Adults who are non-mobile have an increased mortality rate than if they were mobile. A study in the Netherlands reported that people with learning disabilities are 14 times more likely to have a musculoskeletal condition.

• People with learning disabilities are also at an increased risk of oral health problems, dysphagia, diabetes, gastro-oesophageal reflux disease, osteoporosis, constipation and endocrine disorders.
• Personal health risks:
  • <10% of adults in supported living eat a balanced diet.
  • >80% of adults with learning disabilities engage in levels of physical activity below the Department of Healths minimum recommendation.
  • People with learning disabilities are more likely to be either underweight or overweight/obese.

Obstacles Within Health System

People with learning disabilities have poorer health than people without disabilities, and to an extent, this is avoidable. People with learning disabilities face inequalities from early life, and this includes barriers in accessing timely, appropriate and effective health care.

People with learning disabilities have an increased risk of early death compared to the general population. The causes of mortality in people with moderate to severe learning disabilities is three times higher than the general population.

A range of organisational barriers to accessing healthcare services have been identified, these include:

• Lack of services
• Physical barriers
• Failure by healthcare professional to make adjustments for people with regard to literacy and communication difficulties
• ‘Diagnostic overshadowing’ – where symptoms of physical ill health are mistaken or attributed to a person’s behavioural problem
• Negative attitude of healthcare staff towards people with learning disabilities.

Role of the Physiotherapist

Mainstream or Specialist Physiotherapy Services

In the past, it was standard practice for people with learning disabilities to be referred on to specialist services. This placed a lot of demand on the specialist services. In recent years, this has changed and we are now encouraging those with learning disabilities to use mainstream services. This is a result of changes in the Department of Health policies, which aims to "ensure that people with learning disabilities, including those from minority ethnic communities, have the same right of access to mainstream health services as the rest of the population" . When we use the term ‘mainstream’ services, we are referring to what would be classed as services which are used regularly and can be used by the general population.

In order to be referred on to specialist services, a person must have been diagnosed with a learning disability, which as has been previously stated is defined as having a reduced ability to understand new or complex information or learn new skills, a reduced ability to cope independently, and the condition started before adulthood with a lasting effect on the individual's development. If a person is known to have a learning disability, they will be referred on to a specialist learning disability team. Once the team receives the referral, they will make a decision on whether the person requires specialist input or if they can be put into the mainstream system.

It is possible for patients with a learning disability to be seen by a mainstream physiotherapist, depending on the severity their condition affects them, as long as reasonable adjustments are made. If a mainstream physiotherapist treats a patient with a learning disability, they can liaise with the specialist physiotherapist if they need any support to ensure the patient receives the best care.

Physiotherapy Assessment

As already mentioned in the previous section, those with learning disabilities tend to have difficulty with communication. This can make carrying out subjective and objective assessments difficult and may feel daunting to those who are not used to dealing with a patient who has a learning disability. Before the patient has even arrived for their appointment, you need to make sure you prepare if you know before hand that the patient you are seeing has a learning disability. The ACPPLD created a document (figure 3.1) that is aimed at helping mainstream physiotherapists treating patients with learning disabilities.

Figure 3.1 Learning disability booklet produced by the ACPPLD

Points to be taken into consideration are:

1. Preparation before the appointment is key so try to find out in advance about the patient's history and health plan.
2. When planning the appointment, the individual's comfort, accessibility and ability need to be understood.
3. Consent needs to be gained before commencing the assessment.
4. For the most part, the subjective and objective assessments are similar to what would be provided to the general population, however, some adjustments will need to be made to suit the individual needs of the patient. As such, it is important that you have a sound understanding of all the fundamental components of an assessment.
5. During the assessment, make sure to use short and simple sentences and always be checking their understanding of what you are saying.

Physiotherapy Management

The main aims of physiotherapy management and intervention are as follows:

• Assess the needs of the patient and carers
• Maintain good general health of the patient
• Prevent or minimise contractures and prevent fixed positional deformities occurring
• Maximize the patient’s functional movement, ability and independence
• Share knowledge with the patient, carers and family members

As previously mentioned, some of the conditions that come under the term ‘learning disability’ have a physical impact on the individual. This impact can vary greatly and so care needs to be tailored. An awareness of any physical, sensory and/ or communication problems a person has is essential to ensure effective treatment.

The physiotherapist will be able to deal with musculoskeletal, neurological and respiratory issues that may be specifically related to an individual’s condition or something that is completely unrelated. For example, if a patient has a purely musculoskeletal issue that is not due to their condition, a musculoskeletal physiotherapist, may be more suited to treat them. However, if a person has quite demanding communication and care needs, as well as other comorbidities, it may be more appropriate for the specialist physiotherapist to treat them, but they could still have some input from a physiotherapist specialising in the area that concerns the issue.

As with the assessment, many of the skills used in treatment is similar to what the general population will receive, however, a different approach can be taken to help support the individual as well as ensuring their needs are being met. 

If providing exercise sheets, it can help to have pictures along with simple language. Photographing the patient doing the exercises themselves and putting this on the sheet can sometimes be of benefit as they recognise themselves and are therefore more likely to do the exercises. See figures 3.3 and 3.4 below for examples of exercise sheets including text and photographs.

Figure 3.3 Example exercise sheet

Figure 3.4 Example exercise sheet

NHS Shetland provide an Adult Learning Disability Physiotherapy Service Guide. This gives an overview of interventions and outcomes depending on the functional ability of an individual. 

Rebound Therapy

Rebound therapy is the therapeutic use of trampolines. It is currently used with people with a wide range of abilities including those with a mild physical and learning disability, to those with multiple and profound learning disabilities.

Benefits:

• Raise low tone or lower increased tone
• Increase body part awareness, spatial awareness, proprioception and sensory awareness
• Promote relaxation
• Challenges balance to help improve dynamic balance issues
• Increase vocalisation in those with reduced vocal ability, creating a gateway to communication sometimes giving squeals of delight
• Gasps and intakes of breath can also stimulate the cough reflex 

As with any physiotherapy intervention, there are contraindications that need to be considered before any treatment can occur.
The Rebound Therapy Association for Chartered Physiotherapists (RTACP) has produced guidelines on rebound therapy and states 3 absolute contraindications consisting of:

• Cranio-vertebral Instability: including Atlanto-Axial Instability (AAI) and Atlanto-Occipital Instability (AOI). AAI is a condition experienced by 10-20% of people with Down’s Syndrome and occurs due to weakened ligaments causing slack joints.
• Detaching retina
• Pregnancy
  For more information on promoting safe practice with Rebound therapy, please read the RTACP guidelines.
  

Hydrotherapy

Hydrotherapy is a treatment which takes place in heated water using its buoyancy and thermal properties to provide postural support and reduce load on unstable joints.

Benefits:

• Help relieve pain
• Promote relaxation
• Improve cardiorespiratory system
• Provide resistance to help strengthen muscles
• Improve confidence and promote independence 

Contraindications:

• Acute vomiting and diarrhea
• Skin conditions or infections
• Hypotension or hypertension
• Cardiac conditions
• Decreased vital capacity
• Uncontrolled epilepsy
• Fear of water

Care should be taken if a person has:

• Altered sensation
• Urinary and bowel incontinence 

24-hour Postural Care

People who are physically able can adjust and correct their position and posture if they become uncomfortable, however, some people with learning disabilities, especially those with profound and multiple disabilities, may not be able to do so. They may be physically incapable of moving themselves and not be able to communicate their discomfort. As a result, they tend to end up in a poor position which can have adverse effects on their health. These effects include pain, contractures, spinal deformities (such as scoliosis), an increased risk of fractures, loss of function, breathing difficulties and an increased likelihood of surgery.

As physiotherapists, we can use postural care to prevent poor positioning. Postural care aims to protect and restore body shape by using appropriate equipment and positioning techniques.When considering postural care as part of treatment, an assessment tool, called the Mansfield Checklist of Need for Postural Care, can be used to identify whether there is a need for postural care.

The checklist consists of the following questions:

If you answer yes to any of these questions, the individual may benefit from postural care.
Additional information should be written to describe the patient’s position and also explain how this may impact the patient.
Following the assessment of body symmetry, equipment such as wheelchairs, specialised seating, orthotics and sleep systems can be used to maintain a good position over a full 24 hour period.

Please watch this short video which gives a brief explanation of what postural care is.

As posture care needs to be provided essentially 24 hours a day, families and carers will often need to help with maintaining a good position. This requires them to be well educated and trained in the proper technique. Physiotherapists can help provide this by involving family members and/or carers in appointments so that they can practice in a setting where support is provided.

Falls Prevention

There is a high incidence of falls and injuries in those with learning disabilities making it a serious problem. Injuries in those with a learning disability are twice as likely to occur, compared to the general population, and they are 6-8 times more likely to die as a result. 25% to 40% of people with learning disabilities experience at least one fall (with or without injury) a year, with approximately one-third of falls reported to result in injury.

A Falls Pathway Service was set up by a Community Learning Disabilities Physiotherapy Team in Glasgow. An evaluation of the service  was carried out and showed that there was an improvement in both gait and balance, with a reduction in the number of falls.
The Falls Pathway Service is a 12-week home-based exercise programme. Figure 3.5 below shows a list of exercises a physiotherapist can choose from.

Figure 3.5 Falls prevention exercises

The programme involves individuals with learning disabilities completing 2–3 exercises from each section: warm up, general/strengthening, and balance every day for 12 weeks; plus 2–3 aerobic exercises per week for 12 weeks. The exercises are selected by the physiotherapist suited to the individual’s needs.

By following this pathway, physiotherapists are:

• Promoting and providing increased opportunities for weight bearing to reduce the risk of osteoporosis
• Helping to rebuild confidence and overcome fears of falling/causing injury
• Promoting physical activity and exercise

Physical Activity Promotion

What can you do to promote health in those with a learning disability?

Promoting health enables people to take control and be responsible for improving their own health. It extends beyond the focus on individual behaviour, towards a variety of social and environmental interventions.
With the two leading causes of death being respiratory and coronary heart disease respectively, Physical activity needs to be promoted in these individuals.

Those with a learning disability are less likely to participate in physical activity due to:

• Poor motor coordination
• Poor balance
• Inability to perform multiple tasks simultaneously
• Short attention span
• Hyperactivity
• Poor lifestyle orientations
• Poor self-esteem
• Inability to handle a situation

People with learning disabilities are already at risk of developing numerous conditions and being sedentary will only increase this risk. As physiotherapists, we should be getting people with learning disabilities to engage in physical activity where possible.

Effects of physical activity
Engaging in physical activity has shown to:

• Improve lung capacity
• Reduce resting heart rates and blood pressure
• Decrease body fat mass
• Increase lean body mass and muscle strength
• Maintain bone mass and reduce trauma-induced fractures by carrying out weight-bearing activities
• Reduce depression and anxiety levels and improve self-image, mental health and social skills 

Education

Another large part of a physiotherapist’s role is educating all those involved in a person care to help manage their long-term conditions.In order to do this, the individual, their family members and/or carers need to have a good level of health literacy so they understand what information they are receiving, but also so they can give informed consent and make decisions.

Educating everyone involved in an individual’s care as to what their different health needs are aims to improve their understanding of the condition and why we are making specific decisions in relation to the treatment approach.

Summary

The following video is a Physio Natters podcast focusing on learning disabilities. A physiotherapist, who works as a specialist with the community learning disability team in Fife, is the guest speaker. The podcast covers information about the role a physiotherapist plays and gives some helpful advice on what to do should you have a patient with a learning disability. It summarises some of the information discussed in this section so will hopefully help to reinforce your learning. It may also be a better option if you are an aural/auditory learner.

Whilst also providing some advice on how adjustments can be made so that physiotherapists in the mainstream services can help treat those with a learning disability. It has briefly touched on some of the complications that arise from those with learning disabilities having issues surrounding communication and health literacy. With that in mind, the following sections will explore the concepts of communication and health literacy in more detail, and also give advice on tools and strategies that physiotherapists can implement to overcome some of the barriers caused by these issues.

Health Literacy

This section will explore the topic of health literacy and its effect on quality of life as well as health expectancy in national and international levels. Also, this part of the Physiopedia page will view the statistics of health literacy around the world and the actions carried out by the various national and international organisations. In addition, you will be able to explore the available tools and strategies which are suggested to improve health literacy and the impact of disability on the general population.

Definition of Health Literacy

Health literacy has been defined many times since its introduction by the Council on Scientific Affairs for the American Medical Association.In collaboration with the European Health Literacy Consortium, the World Health Organization developed the following definition: “Health literacy is linked to literacy and entails people’s knowledge, motivation and competences to access, understand, appraise and apply health information in order to make judgements and take decisions in everyday life concerning health care, disease prevention and health promotion to maintain or improve quality of life during the life course” (see Figure 5.1).

Figure 5.1 Health Literacy

The European Health Literacy Consortium based their research for the determination of the health literacy terminology on the European Health Literacy Survey. This model (Figure 5.2)  was based on the medical and public health views of health literacy and the data was collected through the analysis of 17 peer-reviewed definitions and systematic literature reviews analysis.

Figure 5.2 Health Literacy and Public

It relates to a range of communications including written, spoken and visual, as identified by the NHS. According to the European Health Literacy Consortium the main purpose of health literacy is “to promote health care through accessing, understanding, appraising and applying health-related information within health care”. 

The Need for Health Literacy

The United Nations Educational, Scientific and Cultural Organization (UNESCO) estimated that 16% of the adult world population, lack even the basic literacy skills.

According to Doyle et al. communicating health information is a core skill required by all healthcare professionals. In order for the information provided to be useful, it is critical that the recipients are able to understand the information they are given.
Part of the difficulties with communication that people with learning disabilities may face include an inability to understand speech, writing and symbols. This will make any situation within healthcare difficult but it especially applies when providing information or giving instructions to patients, noted by Chinn.
People working within health and social care usually respond well when patients have poor health literacy. However, as stated by the Scottish Government, a patient’s health literacy needs is not always evident and professionals can make false assumptions. The NHS recognized that improving people’s understanding is important as when our health literacy needs are not met, the safety, effectiveness and person-centeredness of our care is undermined. The Patient Rights (Scotland) Act states that the needs of patients should be considered, patients should be encouraged to be involved with decision making, and information should be provided in a way that patients can understand. It is suggested that:

• Low health literacy has been linked to poor health behaviors and outcomes, independent of other socio-demographic factors.
• Health behaviors and outcomes associated with poor health literacy.
• Reduced health-related knowledge.
• Poor self-management skills.
• Poor communication between healthcare professional and patients leading to reduced involvement when making decisions.
• Increased risk of developing comorbidities.
• Non-adherence to medication due to difficulty understanding instructions.
• Lower self-reported health status.
• Find it harder to access appropriate services.
• Reduced use of preventive healthcare services.
• Increased risk of hospitalization and longer inpatient stays.
• Increased healthcare cost.

According to the European Health Literacy Survey (Figure 5.3):

Figure 5.3 European Health Literacy Survey

Health Literacy in Numbers

Within Scotland, 26.7% of people have occasional difficulties with day-to-day reading and numeracy, and 3.6% will have severe constraints.Those with learning disabilities face a range of challenges with communication; between 50-90% are estimated to have significant difficulties with communicating. This makes communication with healthcare professionals difficult and can affect their ability to make informed decisions.

Taking a closer look at Figure 5.4 and Figure 5.5:

Figure 5.4 Level of Education (International Standard Classification of Education)

Figure 5.5 Percentage of General Health Literacy Levels

According to the graph more advanced countries like Netherlands have a high percentage of education which positively affects the health literacy numbers compared to other European countries, e.g. Bulgaria, with less educated citizens. The classification of the education of each country is based on the International Standard Classification of Education. 

Internationally the statistics about health literacy are higher in countries with better quality of life, e.g. Western countries, reaching up to 97% compared to countries with less or no quality of life, where the percentage of health literacy can drop down to 50% or even less, given in Figure 5.6.

Figure 5.6 International Statistics of Health Literacy

Baker et al. completed research on the connection of health literacy and mortality and they concluded that there is a clear correlation between health literacy and mortality. According to the study, conducted in the United States, the mortality risk is increased 50-80% to people with inadequate health literacy (Figure 5.7). “Improving health literacy is critically important in tackling health inequalities. People with low health literacy have poorer health status and higher rates of hospital admission, are less likely to adhere to prescribed treatments and care plans, experience more drug and treatment errors, and make less use of preventive services”.

Figure 5.7 Health Literacy and Mortality

Although our topic focuses on individuals with learning disabilities, as the previously stated statistics show, poor health literacy is not restricted to just the learning disability population so the following information can be useful for others who have difficulty understanding information.

National and International Actions

Scotland’s 2020 Vision for Health and Social Care focuses on prevention, anticipation and supported self-management. At the heart of this commitment is addressing health literacy to deliver a safe, effective and person-centred healthcare service throughout the NHS, regardless of individuals’ abilities.
Decreasing the gap between the demands of modern healthcare and people’s abilities will help to reduce health inequalities, and strengthen the wellbeing of both individuals and communities.

The Making it Easy policy  has been developed with a national group, which has drawn on the expertise of front line practitioners, policy makers, academics and those with years of experience with NHS boards and the third sector; they in turn drew on the direct experience of those who have struggled to engage with health and care services. This policy highlights that our challenge In Scotland is to those providing services to make accessible and to encourage more engaging and effective communication.

The NHS found out that people with learning disabilities are not able to remember or comprehend more than half of the information that is given to them. It is crucial for enhancing the understanding of such people for improving their safety, quality of communication, effectiveness of information provided, supporting self-management and improving health literacy. According to the Patient Rights Act Scotland it is important for the health care staff to communicate in effective manner with the patient, so that he/she can understand the information provided. The Making it Easy policy is the National Health Literacy Action Plan for Scotland by NHS Scotland. Although, it has been mainly developed for Scotland, it can be proficiently used by other regions to understand the negative influences of low health literacy in people with learning disabilities. The policy clearly sets out particular actions that must be undertaken by health care professionals to address the problem of low health literacy in people with learning disabilities.

This in turn means that it should make it easier for individuals to access services, allowing patients to have better conversations with healthcare professionals, and be in an informed place to be able to take control of their own health and healthcare.
The Making it Easy policy  and the 2020 vision for Scotland both focus on the need to make changes and be aware to offer patient-centred care. One of these changes addresses that as a healthcare professional, communication with patients should involve a wide range of approaches, making information accessible to all and to enable all patients the chance to make informed decisions over their own health and healthcare management.
Healthcare professionals are expected to be able to:

• Recognize people’s health literacy needs.
• Be aware of appropriate resources.
• Provide a range of communication tools.

Internationally the WHO  draw suggestions from numerous systematic reviews and the main points are:

• Plain language and use of symbols and pictures in the literature in order to influence literacy levels, despite the fact there aren’t strong evidence to support the effectiveness of the improvement in the health outcomes.

Multimedia presentations may improve knowledge of people with both low and high literacy skills, but these do not appear to change health-related behaviors. Community-based and participatory approaches seem to show some promise. For example, participatory education principles and theories of empowerment appear to help parents access, understand and use health information for the benefit of their own and their children’s health. In addition, initiatives that empower single parents by enhancing their parenting skills, combined with public health, skills development, and recreation interventions, have been shown to improve health literacy, health status and community participation, and to reduce reliance on social assistance.
According to the main suggestions and points above the evidence to improve the health literacy are not very strong. In the 7th Global Conference on Health Promotion they decided to set new parameters in the health promotion and how to increase the health literacy levels globally. These points are:

• Increase the access to health information through ICT (information and communication technologies). The information needs to be relevant, timely, user-friendly and of sound quality in order to be effective.
• Promote health information through empowerment. “Enhancing health literacy is one way to empower people to take control over the factors that affect their health and lives. By acquiring relevant knowledge, skills and competencies, they are not only better able to engage in self-development activities but are also better equipped to influence the contexts in which they live”.
• Provide information through multi-sectoral collaboration. This aim requires the combination and coordination of many sectors in a “horizontal” and “vertical” plane. On the horizontal plane there has to be meaningful partnerships with the key stakeholders in education and business sector. On the vertical is the coordination of local, regional and country levels in order to promote synergy, avoid duplication and more effective to address the determinants of health literacy.
• Appropriate ways to measure and report any progress in the health literacy levels. The present methods lack reliability and are more suitable for clinical settings, therefore is essential improved methods to be developed in order to include broader areas of health promotion.

The Making it Easy policy shed light on the ignored issues of low health literacy and its negative influence on the ability on an individual to access health care services, understand and engage in health care services available for him/her. It makes clear that low health literacy is the major contributor in the prevalence of health inequality. It is a major challenge and can be dealt with a collaborative approach by the health care professions, resulting in the improvement of health literacy and effective self-management.

Techniques and Tools/Strategies

Wong and Butler stated that from the psychological perspective proficient learners are able to utilise metacognitive tactics but people who have learning disabilities lack the metacognitive skills to guide their learning process. However, on learning metacognitive skills through tools such as easy to read format, these learners can implement the metacognitive skills to direct their own learning in different situations. The Department of Health has suggested that using Easy Read format is one of the tools for ensuring effective access of people with learning disabilities to health-related information. The major aim of an Easy Read document is to give important information to people with learning disabilities, which they should know.
Swanson, Harris and Graham argued that if Easy Read formats of documents do not contain all the information present in the original document and this means that people with learning disabilities might miss important information. However, Department of Health argues that although, Easy Read format are not complete translation of the document, they are an excellent source for making people understand information that is essential for self-management, as they only highlight important points. These documents provide all the important information that can be used by people with learning disabilities to make decisions associated with health and social care provisions. Easy read format has simple words and pictures to support people with learning disabilities to remember. 

A study conducted by the Department of Health revealed that Easy Read is an effective tool for giving complex information in an attempt to improve health literacy. However, Harwell and Jackson argued that health professional should not just assume that Easy Read formats are always the most appropriate tool for providing information, as people have different levels of learning disabilities. This tool may always not be the answer for managing communication difficulties. Harwell and Jackson further argued that some people may even need help for reading the Easy Read format and in such situations the health professionals can take support of other tools such as videos, presentations and/or one-to-one discussions. However, Snowman and McCown supports the findings made by the Department of Health and asserted that Easy Read documents are an effective tool for managing flow of information between health professional and service users with learning disabilities. Easy Read format helps health professional to provide key information to people with learning disabilities. It is a vital tool for tackling the problem of low health literacy.

In this short video, learning disability volunteers from the project of Getting it Right From the Start are sharing their experiences on easy read documents.

To find out more click here

Impact of Disability on General Population

Learning disability not only affects the quality of life of people facing difficulties in learning, but it also puts a burden on people around them. Harwell and Jackson states that people who have learning disabilities are highly likely to have poor health outcomes. This also means that they have shorter life expectancies than general population. Their poor health outcomes affect people around them, particularly emotionally, thus creating challenges for the health professionals. It is noted that people with learning disabilities often experience health inequalities, resulting in the unfair distribution of social, environmental and economic burden on not only the person who has the learning disability, but also on other members of the general population. According to NICE health inequalities have created burden on the economy and general population. The cost of treating illnesses arising from health equalities has risen to £5.5 billion per year. This has resulted in negative effects on productivity, resulting in productivity losses of about £33 billion annually, in relation to working-age population. Similarly, taxes are lost and an increase in welfare pay outs has been recorded. It is identified by Swanson, Harris and Graham that health inequalities can be prevented by improving opportunities for people with learning disabilities to have access to appropriate support from the health professionals. People with learning disabilities often face problem when communicating and this can put their safety at risk and create challenges for people who communicate with them.
According to a report by Black, the present strategies of care are unsatisfactory, unequal and likely to be breaking the Disability Discrimination Acts. There is a need of adopting practices that can lessen the burden of illness faced by people with learning disabilities and general population. It is important to recognize the disability in its early stages through effective health screenings, in order to provide effective support to the person and his/her family from the start. There is a need of improving health literacy in people with disabilities and in general population, so that people can understand their role in eliminating health inequality. Similarly, it is required that elimination of health inequalities must be measured to assess the progress made by the health professional in reducing the burden of illness. The interventions must be focused to addresses the social determinants of health resulting in health inequalities, for example, the diagram below shows that local economy can be supported by regeneration and business grants. Similarly, other social determinants can also be addresses effectively (see figure 5.8).

Figure 5.8 Social Determinants of health and the role of local government

Policies and Guidelines

This section will present the most relevant and up-to-date policies and guidelines in relation to learning disabilities. It will highlight the most important and useful points of each to help your understanding of the current context of learning disabilities within health care.

Introduction

Please take a few minutes to answer these questions before beginning this section and learning about the policies and guidelines.

1. What do you consider to be important guidelines for a physiotherapist when providing services to people with learning     disabilities?
2. Think about how this can help and guide decisions when offering treatments and services.

The importance of healthcare policy and procedures is to provide standardisation in daily operational tasks and activities. It is important for you to be aware of the policies and procedures, as these are essential in providing clarity when dealing with issues and activities that are critical to health and safety, legal liabilities and regulatory requirements.

Marmot identified large inequalities in health, and the literature highlighted that it is vital for policy makers in every sector across health and social care to take on board and make the appropriate changes, to change professionals delivery of services and close the gap of inequality. Marmot goes on about the gaps in health care quality, particularly in the most vulnerable groups, including those with learning disabilities, and it is these areas which need most improvement.

The focus of looking into the policies and procedures as part of this wiki is for you to have an understanding and awareness of how this applies to individuals with learning disabilities and the importance of equal opportunities.

The policies and guidelines we have chosen to focus on are:

• United Nations
• The Keys to Life
• NHS Quality Assurance Strategy
• Quality Improvement Scotland

These policies and guidelines were chosen for their relevance in treating and caring for individuals with learning disabilities. As previously discussed, individuals with learning disabilities are seen more and more in mainstream services. As physiotherapists, we are more likely than ever to be required to adapt our approach and find this information and skills appropriate for our work.

It is important to familiarise yourself with these policies and guidelines as you may still encounter people with learning disability even if you do not specialise in this particular area.

United Nations (UN)

The Convention on the Rights of Persons with Disabilities: 

• It is an international human rights treaty of the United Nations (UN).
• The aim of this treaty is to protect the rights and dignity of persons with disabilities.
• Parties to the convention have to promote and protect the rights of people with disabilities and ensure that the receive full equality under the law of that country.
• Scotland is one of the countries which has signed this treaty and therefore has to abide by it.
• It came into force in 2008.
  
  
  
  

The Keys to Life

• The Keys to Life is Scotland’s Learning Disability Strategy.
• It was first published in 2013 and significant progress has been made since then.
• It highlights the main things people with learning disabilities have said that are essential to having a good quality life.
• Now its priorities have been outlined which are to be achieved between 2015-2017.
• The implementation of the framework has four strategic outcomes which relate to the United Nations Convention on the Rights of people with disabilities.
• Implementation of this framework will help involve the whole of the Scottish Government to deliver change.
• Implementing the strategy also involve a commitment to human rights based methods to deliver the PANEL and FAIR approach.
  

Find out more about Keys to Life.

Their Vision:
“All citizens of Scotland who have learning disabilities live longer, healthier lives; are supported to participate fully in all aspects of society; prosper as individuals and are valued contributors to a fair and equal Scotland.”

Methods of implementation:
Panel Approach:

• Participation
• Accountability
• Non-discrimination and equality
• Empowerment
• Legality

Fair Approach:

• Understanding the Facts
• Analyse the rights
• Identify the responsibilities
• Review actions

NHS Quality Assurance Strategy

The main aim and focus behind this is to provide the highest quality healthcare services possible to all individuals in Scotland, while allowing patients to recognise the services available and that they are amongst the best in the world. It has been recognised that for this to be achievable, all healthcare professionals have to be on board and working together for the overall benefit of all patients, by delivering person-centred care all the time.

This policy has been updated from 2007 and many improvements have been made, which include sustainability of economic growth and making sure that equal opportunities are offered to everyone across NHSScotland.

The Quality Strategy builds on these foundations and is about putting people at the heart of our NHS.

It means that our NHS will listen to the views of the people, gather information about individual, group perceptions and personal experiences of care and use that information to further improve care by 'Putting people at the heart of our NHS'.

It is about building on the values of the people working in and with NHSScotland and their commitment to providing the best possible care and advice compassionately and reliably by making the right choice for every person, every time with the individual's involvement.
It is about making measurable improvement in the aspects of quality of care that patients, their families and carers and those providing healthcare services see as really important.

Now take some time to look at this diagram and the drivers that have been put into place as part of this policy.

The Quality Strategy Driver Diagram

To read about this driver please click here and go to pages 10-11.

1. Whilst in a clinical setting, which of these have you already seen in place and which do you feel still needs to be implemented?
2. How do you feel that these drivers can be assessed and monitored

On completion of the reflections, we are now going to look at a different policy.

A Quality Alliance, which is the involvement of reporting progress on a regular basis with reference to a set of high-level Quality Outcome Measures, selected to allow monitoring of these Quality Ambitions, and with reference to progress in implementing the improvement interventions.

These Quality Outcome Measures can be found on page 17 of the The Healthcare Quality Strategy for NHSScotland.

Quality Improvement Scotland

Quality Improvement Scotland highlights the importance that every individual in Scotland should receive the highest quality and most unsuitable health care service every time.

Having already read about The Quality Strategy previously, the Quality Improvement Scotland has very similar aims to this policy, and is also part of NHSScotland and is the national healthcare organisation of Scotland.

Quality Improvement Scotland work with staff providing care in GP practices, clinics, hospitals, NHS boards and with patients, carers, communities and the public.

Their drivers are in place to improvement the quality of health care people receive by:

• Supporting and empowering individuals to have an informed voice in managing their own care, treatment and shaping how services are designed and delivered.
• Delivering scrutiny activity which is fair but challenging and leads to improvements for patients.
• Providing quality improvement support to healthcare providers, and
• Providing clinical standards, guidelines and advice based upon the best available evidence.

Something which is important to be aware of is that key parts of our organisation that have specific roles, including:

Healthcare Environment Inspectorate

• Helps reduce the risk of healthcare associated infection to patients by inspecting hospitals in Scotland to ensure they are safe and clean.

Scottish Health Council

• Supports NHS boards to involve staff, patients, carers and communities in the development of health services.

Scottish Health Technologies Group

• Provides advice on the clinical and cost effectiveness of healthcare technologies that are likely to have significant implications for patient care in Scotland.

Scottish Intercollegiate Guidelines Network

• Develops evidence-based clinical practice guidelines for NHSScotland.

Scottish Medicines Consortium

• Accepts for use those newly-licensed medicines that clearly represent good value for money to NHSScotland.

Part of this policy includes the Equality and Diversity Working Group.

This involves consulting the staff on the equality and diversity which includes:

• Implementation, development, monitoring and review of equality outcomes and related action plan in accordance with our legal duties, within the area or field.
• To report progress to the Board through the Scottish Health Council Committee and Staff Governance Committee and help the evaluation of the effectiveness of our equality outcomes.
• Support the development of equality and diversity which includes training and case studies, which promote an organisational culture where equality, respect and fairness are valued and discriminatory practices are not tolerated.
• Encourage a partnership approach with other agencies to maximise effectiveness of and reduce duplication in equality and diversity activities.
• Identify key issues and prioritise required actions in relation to equalities or inequalities impacting on our work
• Provide input as appropriate on reports on equality diversity issues which are produced for the Scottish Health Council Committee and Staff Governance Committee and to
• Recognise and value the diverse nature of the workforce and stakeholders by promoting equality of opportunity in recruitment and engagement of both staff and volunteers.
  

Equality Impact Assessments (EQIA)

The EQIA screening process is put in place to help Quality Improvement Scotland to decide if a policy, function or output of our organisation requires an EQIA or not. This is carried out for every area of work, including work which is produced in collaboration with other bodies. The majority of Quality Improvement Scotland’s work can be progressed with minor or no changes following the completion of an EQIA screening checklist. If, during this process, we identify any differential impact on people with any of the nine protected equality characteristics, the area of work is subject to an impact assessment.

Resources

Completed Equality Impact Assessments can be found below

1. EQIA report for Healthcare Environment Inspectorate acute hospital inspection reports
2. EQIA report for Occupational health and safety at work policy 
3. EQIA report for Participation Standard 
4. EQIA report for Scottish Health Council website
5.