The Role of the Physiotherapist in Learning Disabilities: Communication and Health Literacy
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- 1 Introduction
- 2 Understanding learning disabilities
- 2.1 Definition and diagnostic criteria for learning disabilities
- 2.2 Learning disability VS learning difficulty
- 2.3 Prevalence and demographics of learning disabilities
- 2.4 Different levels of learning disability
- 2.5 Factors resulting in learning disability
- 2.6 Common associated conditions
- 2.7 Impact of learning disability on the person
- 2.8 Obstacles within health system
- 3 Role of the physiotherapist
- 3.1 Introduction to the role
- 3.2 Mainstream or specialist physiotherapy services
- 3.3 Physiotherapy assessment
- 3.4 Physiotherapy management
- 3.5 Rebound Therapy and Hydrotherapy
- 3.6 24-hour postural care
- 3.7 Falls prevention
- 3.8 Physical Activity Promotion
- 3.9 Education
- 3.10 Critical Appraisal
- 3.11 Summary
- 4 Communication
- 5 Health literacy
- 6 Policies and guidelines
- 7 Case studies
- 8 Conclusion
- 9 References>
This Physiopedia page has been created by a group of 4th year BSc (Hons) Physiotherapy students at Queen Margaret University, Edinburgh. As part of the Contemporary and Emerging Issues in Physiotherapy Practice module, we have decided to complete an online learning resource. This resource is primarily aimed at senior physiotherapy students and newly qualified physiotherapists. This online wiki will explore the areas of communication and health literacy when working with people who have learning disabilities. This resource will take approximately 10 hours to complete and will contribute to your CPD profile. Besides providing you with new information and researched evidence, there will be quizzes and opportunities for you to reflect.
Resources have been broken down into smaller sections, enabling the learner to complete learning tasks and activities as and when required. When completing this Physiopedia page, activities and tasks can be carried out individually, with colleagues or managers, or as part of a group. You may find that further or appropriate training is required for the application within clinical practice. The following is merely to provide information and an insight into learning disabilities and the role of the physiotherapist.
Why is there a need for this Physiopedia page
In 2015, there were 27,218 adults with learning disabilities known to local authorities in Scotland. Therefore, it is important for physiotherapists to have an understanding of this condition and its impact. Most people with learning disabilities have greater health needs than the general population. They are more likely to experience mental illness and are more prone to chronic illnesses such as epilepsy, physical and sensory impairments. They also have communication difficulties which may make accessing health care difficult for them. As the life expectancy of people with learning disabilities have been increasing, this creates a contemporary and emerging issue in physiotherapy practice. Therefore, it is important for physiotherapists to have an understanding of the complex health needs that people with learning disabilities may have and be able to implement patient-centred care.
As mentioned above this is a 10 hour learning resource. This Physiopedia page has been designed to allow you to work through it at your own pace. You are not required to complete it all in one sitting. It is recommended that you take rests as required. The outline below is a guide on how much time you should spend on each section.
- Introduction: 30 minutes
- Understanding learning disabilities: 1 hour and 30 minutes
- The role of the physiotherapist: 3 hours
- Communication: 2 hours and 30 minutes
- Health literacy: 1 hour and 30 minutes
- Policies and guidelines: 1 hour
- Case studies and conclusion: 1 hour
By the end of this online activity you should be able to:
Different individuals have different learning styles, thus as part of our consideration for you to make the most of your learning through this wiki, various activities and resources will be included to cover the different learning types and styles.
Are you aware of the different learning styles and which best suits you?
If you are not aware of your ideal learning style but would be interested in finding out, you can fill in a short questionnaire, which will take approximately 5 minutes. This will then reveal your ideal learning style and most suited learning methods, which would be useful to know, not only throughout this wiki, but also as part of your future learning.
The different learning styles are:
Blooms taxonomyuses a hierarchy to establish the different learning levels. Figure 1.1 demonstrates the pyramid structure and highlights that a foundation needs to be part of the learning process before this learning can be applied to everyday practices, and evaluations can be made.
Learning outcomes for this wiki have been based around Bloom's model, and the higher learning levels have been selected to be appropriate for final year students and newly qualified physiotherapists. This is to allow a deeper understanding of the topics covered and to be able to apply these to everyday situations.
There will be different activities provided throughout this resource which are aimed at the different learning types.
How this resource relates to the Knowledge and Skills Framework (KSF)
The KSF is a competence framework that supports professional development and career progression for professionals working in the NHS. It ensures that staff are supported so that they can carry out their job effectively. This physiopedia page aims to address some of the core components (Figure 1.2) of the KSF required of a Band 5 Physiotherapist.
By completing this online resource it will help you to achieve some of the key indicators. Here is a list of the key indicators that you will achieve in this wiki:
- Improves the effectiveness of communication through communication skills.
- Constructively manages barriers to effective communication.
Personal and people development:
- Takes responsibility for own personal development and takes an active part in learning opportunities.
- Evaluates the effectiveness of learning opportunities and alerts others to benefits and problems.
- Acts consistently with legislation, policies, procedures and other quality approaches and encourages others to do so.
- Uses and maintains resources efficiently and effectively and encourages others to do so.
Equality and diversity:
- Recognises people’s rights and acts in accordance with legislation, policies and procedures.
- Acts in ways that:
- Respect diversity.
- View people as individuals.
Assessment and treatment planning:
- Selects appropriate assessment approaches, methods, techniques and equipment, in line with
- Individual needs and characteristics.
- Evidence of effectiveness.
- The resources available.
- Monitors individuals during assessments and takes the appropriate action in relation to any significant changes or possible risks.
- Evaluates assessment findings/results and takes appropriate action when there are issues.
- Identifies individuals whose needs fall outside protocols / pathways / models and makes referrals to the appropriate practitioners with the necessary degree of urgency.
Understanding learning disabilities
Prior to beginning this online resource, please take a moment to ask yourself these questions:
1. How many people in the UK have a learning disability?
2. What are the main causes of a learning disability?
Also, please take a moment to reflect on your current knowledge and experience:
1. How many patients treated on your placement or in your career had a learning disability?
2. How confident do you feel treating a patient who has a learning disability?
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.” (p14)
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:
- Intellectual impairment (IQ<70);
- Social or adaptive dysfunction combined with IQ; and
- Early onset.
Watch the video below to know more about the meaning of learning disabilities:
Learning disability VS 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: Higher prevalence for developing countries, women, and children from poorer households and ethnic minority groups, but specific data are difficult to secure. 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, the Scottish Commission for Learning Disabilities (SCLD) reported the number of people with learning disabilities in Scotland. 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.
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:
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.
Common associated conditions
For the purpose of this online learning resource, Down’s Syndrome, Autism and Cerebral Palsy will be explored.
It is said that 750 babies are born with Down’s Syndrome each year in the UK. Down’s Syndrome occurs when there are three copies of chromosome 21 in the cells of the body. This is also known as trisomy 21. Having three copies of chromosome 21 disrupts the normal course of development and causes the characteristics of Down’s Syndrome and the associated health risks. Strong associations have been found between maternal socioeconomic status, maternal age and chromosome 21-nondisjunction, the cause of 95% of Down's syndrome cases. There are three types of Down's Syndrome: Trisomy 21 (95%), Translocation (4%) and Mosaic (1%).
People with Down’s syndrome have:
- Distinct facial features such as a flat face, a small broad nose, upward slanting eyes and a large tongue, as well as common physical traits of low muscle tone, small stature and a single deep crease across the center of the palm.
- A higher risk of developing respiratory conditions, leukemia, heart defects, gastrointestinal obstruction, hearing loss and eye abnormalities.
- A moderate to severe learning disability and often develop much slower than their peers.
- Communication difficulties, for example stuttering, which will be explored in later parts of the wiki.
Here is a video describing Down’s syndrome:
Autism is a lifelong developmental disability. In the UK, it affects 700,000 people, which is more than 1 in a 100. It is known as a spectrum condition as it affects people differently and to varying degrees. Some people with autism will lead independent lives while others will need lifelong support. Some people have a learning disability (44-55%) while others have average to above average intelligence. Some people also have mental health issues and other health conditions.
People with autism report that the world is a very overwhelming place for them. They find it difficult to understand and relate to other people. This makes it difficult for them to take part in everyday activities and social situations. It is a condition that cannot be cured. Autism is defined as affecting social communication and social interaction.
People with autism have difficulties with interpreting verbal and non-verbal language, tone of voice and gestures. They have a literal understanding of language. They may find it difficult to understand facial expressions and jokes and sarcasm. Some of them may not speak while others may have limited speech. They may use alternate methods of communication such as sign language and symbols.
This means that people with autism have difficulty ‘reading’ other people. They may appear insensitive, not seek comfort from other people, prefer time alone when overloaded by other people and appear to behave strangely. It may be hard for people with autism to make friends.
People with autism may also have repetitive behaviours and specific routines. As the world is an unpredictable place for autistic people they tend to have a daily routine so they know what they are going to do every day. For example, they may want to travel to school/work the same way every day or eat the same meal for breakfast every day. Some of them have a highly-focused interest which starts from an early age. These can change or be lifelong. Some examples include, music, computer games, train, movie or books. Some of them may also be hyper- or hypo-sensitive to sound, taste, touch, smells, lights, colours, pain or temperature. This can cause anxiety or on the other hand they may be fascinated by certain lights or colours.
Here's a video describing Autism:
Cerebral Palsy (CP)
The Surveillance of Cerebral Palsy in Europe defines cerebral palsy (CP) as:
“A group of permanent and non-progressive disorders of movement and posture caused by a central nervous lesion, damage or dysfunction originating early in life.”
CP is thought to occur in 2 to 3 per 1000 live births. It is an incurable neurological condition that is caused by trauma to the brain or complications that occur before, during or shortly after birth. CP primarily affects mobility and coordination, but may cause intellectual disabilities in severe cases, as well as an inability to speak. Severe cases are usually diagnosed by the age of two, while milder manifestations may not be diagnosed until a child is 5 years old.
Most symptoms of CP, such as impairments to cognition, speech and movement, are difficult to recognise until a child is of age to learn how to speak and walk. Other common symptoms include seizures, and impaired bladder and bowel control. Learning disabilities in patients with CP can be complicated by the fact that symptoms of CP include vision, hearing and communication impairments, which can make it difficult for them to express themselves and for others to know whether the patient comprehends the information.
Early intervention before a child turns 3 can help with the learning disabilities associated with the condition.
Evidence has shown that 2% of the CP population has learning disability and the number is steadily increasing. This may be due to higher survival rate in preterm babies, thus CP and learning disability are more highly represented. This is supported by Colvin, where evidence showed that babies of 20-32 week gestation have significantly higher risk of both cerebral palsy and learning disability. A systematic review carried out by Odding et al. revealed that 23-44% of the CP population have a cognitive impairment and 30-41% with a severe impairment (IQ<50).
There are four types of CP, each differently defined based on their symptoms:
- Spastic: The most prevalent form, accounting for 70-80% of the cases, and are caused by complications in brain-to-nerve-to-muscle communication. These individuals are hypertonic and have stiff, jerky movements. They may also develop joint contractures and deformities.
- Dyskinetic: This accounts for 25% of the cases and is caused by damage to the basal ganglia. These individuals have slow, involuntary, purposeless movements.
- Ataxic: This accounts for 5-10% of the cases and is caused by damage to the cerebellum. These individuals usually have all 4 limbs and trunk affected, and are hypotonic with poor balance and coordination, and intention tremor.
- Mixed: This accounts for 10% of the cases, and is a combination of 2 or more types of CP. These individuals usually have stiff and involuntary movements, and low muscle tone, caused by injury to both the pyramidal and extrapyramidal areas of the brain.
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:
- Affective (mood) disorders: depressive episodes, recurrent depressive disorder, cyclothymia, manic episodes, bipolar affective disorders and persistent mood disorder.
- Anxiety, stress related disorders: phobic anxiety disorder, panic disorder, obsessive-compulsive disorder, reaction to severe stress and adjustment disorders.
- 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.
- 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.
- 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.
- 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.
Quiz: Understanding Learning Disabilities
Role of the physiotherapist
Introduction to the role
Before beginning this section, please take 5 minutes to consider and answer the questions below.
1. What do you consider to be the role of the physiotherapist for people with learning disabilities?
2. Do you feel it is a specialist area or can mainstream services be accessed?
This section will provide a broad overview of the physiotherapist’s role with someone who has a learning disability. It will give an insight into what a specialist learning disability physiotherapist does, but will also give some advice on how to treat someone with a learning disability that accesses mainstream services. As there is little content that focuses on learning disabilities within university courses, this will provide useful information and advice on what to do should you need to treat a patient with a learning disability. This will help to supply a context for the reader before leading into the sections following on communication and health literacy.
According to the Association of Chartered Physiotherapists for People with a Learning Disability (ACPPLD), our role as physiotherapists consists of 24 hour posture care, management of long-term conditions, recommending specific treatments and promoting health.
As with most patients we see, our aim as physiotherapists is to maximise functional mobility and enable independency as much as possible. Physiotherapist’s provide an assessment and treatment of physical problems and are involved in improving mobility, movement and function, and where appropriate, advising on the provision of specialist equipment.
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" (p 6). 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. However, if a person has needs which cannot be met by mainstream services, specialist services can be provided. This may be the case if a person has a learning disability.
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.
Effective health care is dependent on good communication between all involved in an individual’s care. 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.
Preparation before the appointment is key so try to find out in advance:
- Relevant medical history - they might not be able to remember or explain all the details you need.
- Information relating to the particular condition or syndrome they may have to give a holistic picture.
- If the person has a Health Action Plan, Health Passport or communication passport and request a copy. This will help to give an indication of the level of communication a person has and may give the physiotherapist an idea of what tools/methods they use to communicate.
- If the person has specific likes or dislikes, which may affect the appointment.
When planning the appointment, several factors need to be considered:
- Location and environment of the appointment – ideally want the person to be relaxed and comfortable. Try to choose an area that is quiet to avoid distractions. This applies to both community and clinical settings. If your location can be difficult to find, offer to meet them at front door to escort them.
- Length of appointment - As communication can often be an issue, more time may be needed for a successful appointment to avoid rushing the patient. Alternatively, if you are aware that someone is more easily distracted, it may of more benefit to offer several short appointments.
- Is the person literate or has difficulty understanding written information? You should consider arranging appointments via telephone if this is possible. You could also consider sending the appointment letter in an easy read format (see figure 3.2).
- Where appropriate ask for a carer who knows the person well to attend with them. This may make an assessment easier if they have a good understanding of the patient’s background.
- Check whether the person needs specialist equipment for the appointment (e.g. hoist).
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.
During the assessment, make sure to use short and simple sentences and always be checking their understanding of what you are saying.
Although it can make your assessment more difficult if your patient is unable to communicate, you also need to be careful of those that are apparently able to articulate what they are feeling. Individuals like this appear to use language well but some of the things they say may be learnt phrases. This point needs to be highlighted as individuals like this may be masking the difficulties they have with verbal comprehension. This can lead people to believe that they have been understood when in fact, the individual may not fully understand what you are asking or telling them.
When asking about pain, you may be able to use photographs, pictures and symbols to help. Even if a patient has difficulty expressing themselves with words, the majority of communication is done through body language, so you can still make use of nonverbal communication to help with your assessment. For example, observe if they have any changes in behaviour such as changes in facial expression. These can be helpful to give you a bigger picture and a more comprehensive assessment.
If they have someone with them, it is good to take advantage of having them there, especially if they know the patient well. This however, does rely on the assumptions of the carer which may not necessarily be correct.
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 specialist learning disability physiotherapists will not see patients for one specific thing. As learning disabilities are a lifelong condition and often have additional health needs, physiotherapists will respond to these accordingly. This means that although they are specialised in the population of people with a learning disability, they can offer a mixture of services within that clinical group. 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. When communicating, language should be simple and slowed down.
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.
The needs of carers/family members, especially for those who are semi-dependent or totally, dependent cannot be ignored. Cooperation is essential in order to achieve goals and carry out treatment plans. To address their needs, there must be good communication between the physiotherapist and all concerned with the delivery of care to the patient.
When we consider health we often focus more on physical health than social, emotional or mental health. It is important that we equally consider the person’s social, emotional and mental health needs.
People with learning disabilities are at an increased risk of developing mental health problems compared to the general population. Common mental health problems such as anxiety and depression occur more frequently among this group of people. Mental health needs are sometimes difficult to diagnose and treat due to communication difficulties and/or because the problem can present differently in people with learning disabilities. By working in a person centered way, and supporting a person in a holistic approach, we can help to decrease the risk of mental health problems developing. By getting people to engage in activities they enjoy and want to do to lead more active lives, we can help reduce the risk of mental health problems.
As well as providing general physiotherapy services, other specific treatments may be recommended that will suit the individual care needs of a patient. These other treatments are offered as additional interventions along with the other care they receive.
As with any physiotherapy modality, appropriate training and competence may need to occur before they can be put into practise.
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 and Hydrotherapy
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.
- 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
For more information on promoting safe practice with Rebound therapy, please read the RTACP guidelines.
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.
- Help relieve pain
- Promote relaxation
- Improve cardiorespiratory system
- Provide resistance to help strengthen muscles
- Improve confidence and promote independence 
- 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:
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.
For further information, the following book provides useful information surrounding treatment and management.
Rennie, J editor. Learning disability: Physical Therapy Treatment and Management - A Collaborative Approach. 2nd ed. Chichester: John Wiley & Sons, 2007.
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.
With falls being the most common cause of injury for people with learning disabilities, and injuries having more serious consequences within the population, it is a priority to have effective falls prevention. With balance and gait problems increasing the risk of falls, physiotherapists can help improve these issues by developing tailored exercise interventions.
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.
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, promoting physical activity is a key part of the physiotherapist’s role.
The majority of people with learning disabilities do not meet the physical activity recommendations. Leading a sedentary lifestyle increases the risk of developing obesity, diabetes, hypertension and cardiovascular disease.
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
- 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 
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.
As stated in the previous section, people with a learning disability have more health care needs than the general population.
Why do you think those with a learning disability have more health needs than the general population?
People with a learning disability:
- Are less likely to exercise and eat healthily
- Do not always have the knowledge or understanding to make healthy choices, and rely on others for support
- People with learning disabilities living alone or with minimal care may have inadequate support to help them make positive choices about their health
- Ineffective and/or inaccessible provision of appropriate health information 
As a result of these increased health needs, people with a learning disability can have:
- A shorter life expectancy than the general population
- Poorer quality of life
- Increased risk of exclusion
- Conditions being undetected and therefore untreated 
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.
Although there is a variety of options to consider when treating someone with a learning disability, the evidence is lacking. To ensure you are using effective treatments, you need to appraise the evidence base, even if this is not extensive.
The best research evidence helps to aid decision making and provide the highest level of care. In order to know you are using the best possible evidence, appraisal is needed.The following activity will get the reader to appraise one of the journal articles that have been referenced in this section.
Using either the CASP or SIGN checklist tools to help you, conduct a critical appraisal of the following article:
Injuries, falls and accidents among adults with intellectual disabilities. Prospective cohort study.
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.
1. Take 10 minutes to reflect on your answers to the questions at the beginning of this section.
Have your answers changed in any way?
2. How would you feel now if you were to treat a person with a learning disability?
This section has outlined the role of a specialist learning disability physiotherapist, 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.
This section will explore the physiology of the brain and its impact on communication, the impact of communication diificulties on an individual, barriers to communication, strategies to improve communication and acquiring consent in practice.
Opportunities to test you knowledge and reflect upon your learning will be provided throughout this section.
Definition of communication
50 to 90% of the people with learning difficulties have communication difficulties. According to Chadwick and Jolliffe, communication is defined as “a mutual interactive process involving adaptation by both the communicative partners”. It is not just a pure transaction of information, but also relationships can be formed and build up in the process.
Language is a complex form of communication that involves written or spoken words to convey ideas and symbolise objects. Reading, writing, drawing, speaking, listening, adjusting one’s tone of voice, making eye contact are all involved on communication. Communication involves ‘expression’ and ‘comprehension’ with each aspect being related to a specific neural network.
Physiology of brain and how it affects communication
Broca’s area is known as the motor-speech area and it is located adjacent to the precentral gyrus of the motor cortex in the frontal lobes. This area controls the movements required for articulation, facial expression and phonation.
Wernicke’s area includes the auditory comprehension centre. It lies in the posterior superior temporal lobe near the auditory cortex. It plays a role in understanding both spoken and written messages as well as being able to formulate coherent speech. Commands generated in Wernicke’s area are transferred via a fibre tract called the arcuate fasciculus to Broca’s area. Wernicke’s area receives input from both the visual cortex and the auditory cortex.
Types of communication difficulties
Damage to the language centres of the brain can result in aphasia. Aphasia can affect expression and comprehension of speech, reading and writing, gesture and the use of language. There are 3 types of aphasia - expressive, receptive and global.
- Expressive aphasia is when a person has difficulty translating their ideas into meaningful sounds which results in non-fluent speech. It is associated with damage in Broca’s area.
- Receptive aphasia is associated with damage in Wernicke’s area. People with receptive aphasia have difficulty in the comprehension of language.
- Global aphasia occurs where there is widespread brain damage including lesions in the left hemisphere. This results in impairment of both expressive and receptive language functions. There are also a range of other neurological signs such as hemianopia, hemiplegia, visual impairments, auditory impairments, attention and memory impairments and other cognitive impairments.
Dysarthria refers to difficulty with executing speech. There are five sub-systems that are required in the coordination of speech. These include respiration, phonation, articulation, resonance and prosody. Weakness in any of these systems or incoordination of these systems can cause dysarthria.
Apraxia of Speech
This is an inability to programme speech movements. It is an impairment in the ability to coordinate the timing, force production and sequencing of movements for the production of speech.
- A person may not understand some or all of the instructions that are given to them.
- A person’s non-verbal communication may suggest that they understand what you are saying but in fact they may not understand what you are saying. A person may mirror you, such that if you smile and nod they may do the same and they may also mirror your body language too.
Some people may have difficulty finding their words which will affect the way they answer your questions.
Impact of communication difficulties
Difficulty in communication can lower one’s self-esteem and result in low moods which will further impair communication. This may result in “diagnostic overshadowing”, where people with learning disabilities are often misunderstood as having challenging behaviour when it is in fact their way of trying to communicate, and hence they are less likely to have chances to express their views.
Barriers to communication
People with learning disability have limited vocabulary, problems expressing themselves and comprehending verbal and written information. They may also feel apprehensive and stressed meeting strangers in new environments. They are also 10 times more likely to have serious sight problems.
Strategies for effective communication
The video below explains ways of communicating with individuals have a learning disability:
- Use easy and simplified language, but do not appear supercilious.
- Speak at a slow comfortable pace. 
- Observe for common subtle indicators of pain:
- Change in behaviour.
- Change in noise level.
- Change in body language or facial expressions.
- Patient is holding the part of the body that hurts.
Tools to enhance communication and assessment
Pictures and symbols assist in the identification of location, type, severity and duration of pain. For example, these tools by Kingston and Bailey  allowed people with learning disabilities the opportunity and freedom to talk and describe their pain:
Pain diary (Figure 4.2) 
- A tick chart for the person with learning disability to complete.
Pain story (Figure 4.3) 
- A template to help individuals talk about their pain.
- Includes aspects of the individual’s history, previous experiences of pain, and current influences upon their behaviour.
- Makaton is a language programme designed to provide a means of communication to people who have difficulty communicating by speaking.
- Research has shown that this language programme has been effectively used with individuals who have autism, Down’s syndrome, multisensory impairment and neurological disorders.
- Makaton uses signs from British Sign Language.
- It uses a multimodal approach to teach language and literacy skills.
- The programme uses a combination of speech, signs and symbols to meet the needs of the student.
British Sign Language (BSL):
- Sign Language is a means of communicating visually using gestures, facial expression and body language. It is mainly used by people who are deaf or have a hearing impairment.
- BSL has it’s own grammatical structure and syntax. It is not dependent or strongly related to spoken English.
- In 2011, it was reported that BSL was the preferred language 145,000 in the UK.
- A form of communication for tactile learners.
- Substitutes visual reading and writing.
- Usually for people with visual impairments or deafblindness.
Use of assistive technology:
- Symbols: Symbols can be used by people with communication difficulties to understand what people are saying and use them as a means of expressing themselves. Symbols are mostly available as collections or sets. Usually the word is printed above the symbol.
- Eye gaze: Eye gaze (Figure 4.4) is a method of communicating in which the person controls the mouse of a computer with their eyes. It works by the camera picking up light reflections from a person's pupils and then translating the eye movement into cursor movements.
- Voice Output Communication Aids (VOCAs) (Figure 4.5): This type of communication aid uses electronically stored speech as a means ofcommunication. Individual words and phrases can be used to form Sentences or longer messages. The vocabulary can contain several thousand words. Speech output may be digitised pre-recorded speech, synthesised (artificial) speech or both. Digitised messages are created by recording spoken words directly into the communication aid. Synthesised speech is computer-generated speech.
Inclusive communication is a means of sharing information so that everybody can understand it. For service providers, it means that you understand that people understand and express themselves in different ways. Inclusive communication refers to:
- Written information
- Face to face
- Online information
Inclusive communication aims to ensure that people with communication support needs are able to live independently, access services easily and are able to participate in the wider community.
A person with communication support needs may need support with understanding, expressing themselves and interacting with others. As physiotherapists we need to use other methods of communication so that our patients understand what we are saying to them and are able to express themselves.
A person with communication support needs may:
- Avoid services completely.
- Not turn up for an appointment.
- Respond only to some advice given or nodding their head as though they understand.
- Ask lots of repeated questions.
- Give irrelevant, rambling or unclear sentences.
- Have challenging behaviours.
- Appear bored or unable to maintain attention.
- Have difficulty describing feelings or events, may be explained in sentences that do not make sense.
- Express very strong emotions that may seem inappropriate to the situation such as anger or frustration.
The six principles of inclusive communication are:
Complete a SWOT (strengths, weaknesses, opportunities and threats) analysis of your skills and knowledge when communicating with people with learning disabilities.
Below are 6 physiotherapy terms that you may use when describing a treatment/exercise/condition. How would you explain these terms to the people with learning disabilities?
Muscle strength, skeletal system, ligament, adhesive capsulitis, reflexes, patellar bursitis.
Acquiring informed consent
It is imperative to always acquire informed consent from the patients before commencing assessments or treatments. Informed consent is defined by the Law Society as: ‘an individual is always presumed to be competent, or to have mental capacity to enter into a particular transaction, until the contrary is proved’. Therefore, you should bear in mind that no one, even the parents, can consent to or refuse treatment on behalf of another adult who lacks capacity to consent. Some people will never be able to make decisions, but judgement must not be made until all practicable steps have been taken to help the patient. You must only regard a patient as lacking capacity once it is clear that after all appropriate help and support, they cannot understand, retain, use or weigh up the information needed to make that decision, or communicate their wishes.
Therefore, consent can be waived, but only under certain conditions:
- To preserve life, health or well being of the person e.g. in emergency situations
- If the patient is being held under the Mental Health Act
- It is agreed during a formal ‘Best Interests’ meeting (a multidisciplinary meeting including all professionals/ carers/family/patient involved in the care of the patient) that a particular intervention was in accordance with best practice, which includes best medical interests and the patient’s general being, wishes, and needs.
Who can give informed consent? Individuals who received an understandable explanation of the following:
- What will happen and why it is necessary in very simple terms
- The benefits and risks of the treatment and what alternatives are available
- What will happen if the patient does not consent, and
- Being able to retain what you have discussed with them and able to make a decision
Someone with severe learning disability is thought to be unable to make a decision if they can't:
- Understand information about the decision
- Remember that information
- Use that information to make a decision
- Communicate their decision by talking, using sign language or by any other means
Where the patient has never been competent, relatives, carers and friends may be best placed to advise on the patient's needs and preferences. It is good practice to consult with people close to the patient to gain agreement unless the person had good reasons that they would not wish those people to be consulted, or the situation is urgent. If an incompetent patient has clearly indicated in the past, while competent, that they would refuse treatment in certain circumstances (an 'advance refusal'), and those circumstances arise, you must abide by that refusal.
Never ever coerce a patient into making decisions, just because you believe that the patient should have the treatment. If controversial circumstances are involved, decisions around best interests should be made via the court.
To find out whether the individual has the capacity to give informed consent, it is essential to:
- Elicit what skills or knowledge the patient may require to exercise capacity
- Find out what support and information the patient requires to achieve capacity, and
- Involve someone who knows the patient well and their level of communication
What does capacity to give informed consent mean?
Capacity refers to the ability to use and understand information to make a particular decision at a particular time, and can vary in the same person for different decisions. Understanding depends on cognitive abilities, effective communication and accessible information. A person with capacity has the right to refuse treatment, whereas in the case of an adult who lacks capacity, the health professional has a duty to provide treatment and care in the best interests of that adult, even if the person does not agree.
Here's an adapted case study to aid your understanding of what it meant by capacity.
50-year-old Mr A has severe cerebral palsy with mild learning disabilities and some swallowing difficulties. He developed epilepsy and was offered tablets by the doctor. After the doctor’s explanation, he said that the epilepsy was not causing him any problems and that he hated to take tablets. He understood that tablets would prevent a seizure, but he did not think the treatment was worth his while. The doctor respected his decision.
1 year later, Mr A’s dysphagia got worse (NB this was not caused by non-treatment of the epilepsy). He had repeated chest infections. If he continued oral intake of food, he was likely to develop aspiration pneumonia, or die of undernutrition. He was offered a feeding gastronomy, but he refused. Did Mr A really understand what a gastronomy involved? Did he realise that he might die without one?
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).
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.
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 ina 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):
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:
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.
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”.
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).
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.
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.
“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:
- Non-discrimination and equality
- 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 everytime.
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.
For more information, have a look at Public Sector Equality Duty Progress Report
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.
Completed Equality Impact Assessments can be found below
- EQIA report for Healthcare Environment Inspectorate acute hospital inspection reports
- EQIA report for Occupational health and safety at work policy
- EQIA report for Participation Standard
- EQIA report for Scottish Health Council website
Well done for completing this section and the learning material! The last sections will provide activities to help you reflect on your learning and how you can take this into your everyday practices, not just for individuals with learning disabilities but for every person, on every encounter.
Finally, after completing this Physiopedia page you should spend 40 minutes completing the two case studies below. These case studies will reinforce what you have learnt throughout the online resource.
Patrick is 25 years old with Down’s Syndrome and a mild learning disability. He lives at home with his parents and two younger siblings. He works two days a week in the local grocery store. His main duties include stocking shelves and packing bags. His hobbies include drama and football. Patrick plays football twice a week with the special olympics football team. Over the past three weeks Patrick has been complaining of pain in his right knee. He reports that it is worse after he plays football and when he is working. His GP has referred him to outpatient physiotherapy. Patrick attends his physiotherapy appointment with his mother.
Here are some questions to ask yourself prior to seeing Patrick:
- Who would you ask for consent from?
- How might you ask Patrick about his pain so that he is able to understand?
- What kind of language would you use when communicating with Patrick?
- How might you compile a home exercise programme for Patrick?
Ms B is a 30-year-old with moderate learning disability. She had a fall recently and fractured her arm. After the cast was removed, she was referred for outpatient physiotherapy. When asked to rate her pain score, she gave 2/10. However, she screamed on palpation and pushed the physiotherapist away when he tried to examine it. After several failed attempts, the physiotherapist then concluded that Ms B was refusing treatment. The fracture failed to heal properly and she lost the use of her arm.
Questions to ask yourself:
- Did the physiotherapist do the right thing?
- What could he have done to prevent such a dire result?
After completing this online resource, you will have achieved the six learning outcomes stated at the beginning of the Physiopedia page. By completing this online resource, it is hoped that you will be more confident when working with individuals who have a learning disability. You should also be able to use the knowledge that you have learnt to aid your clinical reasoning in the practice setting.
Please spend 20 minutes to reflect on what you have learnt. The following questions should help you with your reflection:
1. How has your clinical practice been influenced by the knowledge you have gained from this learning resource?
2. Is there any area that you would like to have a deeper understanding of? How might you address this area?
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