Introduction to Learning Disability Nursing Workbook
Please read the workbook and complete the reflection accounts or scenario in each section:
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• 5 reflective accounts (Label 1st, 2nd, 3rd, 4th and 5th in red below)
• 2 scenario (Label 6th and 7th in red below)
• All the content writing on reflection such as legislations and practices should be based on United Kingdom.
• 5 reflective accounts should use Gibbs Reflective Cycle, 2 scenario consists of 3 questions that need to be answered i.e. A, B and C)
• Please allocate the word count as below:
– 1st : 400
– 2nd : 400
– 3rd : 350
– 4th : 350
– 5th : 400
– 6th : 300
– 7th : 300
Section 1 Aims of Workbook 3
Section 2 Terminology 4
Signs & Symptoms 5
Reflective Account No. 1 6
Section 3 Causes and Manifestations 7
Environmental Causes each stage 8
Chromosomal Abnormalities 9
Gene Abnormalities 11
Reflective Account No. 2 12
Section 4 Policy & Law 13
The Equality Act 13
Human Rights Act 13
Mental Capacity Act 13
Safeguarding Adults 14
Reflective Account No. 3 16
Reflective Account No. 4 18
Section 5 Nursing People with Learning Disability 18
Physical Health Needs 20
Mental Health Needs 20
Reflective Account No. 5 21
Section 6 Test Your Knowledge 22
Multiple Choice 22
Knowledge to Practice Scenarios 24
Section 7 References 26
Work Book Aims
This work book aims to provide an understanding of people with a learning disability and the issues that impact upon their health needs. On completion of this workbook you will understand:
• what learning disability is
• the importance for nurses of all disciplines to develop knowledge and skills to support people with learning disability
• the health risks for people with learning disability
• the adjustments nurses should make when supporting someone with learning disability
• the communication needs of people with learning disability
• the laws and policies that are in place to protect people with learning disability and ensure they receive equal services
• Have skills to support someone with learning disability
• Be prepared and know what you can do to support someone with learning disability
• Know where you can find resources to support people with learning disability
Some of the sections have recommended further reading. By taking the opportunity to explore this you will enhance your knowledge further.
Test your knowledge
Reflective Accounts – At the end of some sections you are asked to write a reflective account of an experience you have had supporting someone with learning disabilities.
Test – At the end of the booklet there is a short test, which will act as a guide to see how much you have learnt and if you need to go back over any areas.
The reflective accounts and the test at the end of the booklet will help consolidate your learning.
There are many terms used throughout history and currently for people with learning disability. Whichever term is used it is a label and it is important from the outset that it is recognised that a label describes one aspect of a person, but does not capture the whole person (BILD, 2011).
Learning disability is the term most commonly used in the UK. An important term used globally is Intellectual Disability – you will generate more hits with this term in a literature search.
This workbook will use the term ‘people with learning disability’.
There are varying definitions of learning disability but in essence it is a life-long condition that started before adulthood. In the UK the most commonly used definition is the definition used in the White Paper ‘Valuing People’ (DOH, 2001) which is the presence of:
• A significant reduced ability to understand new or complex information, to learn new skills (impaired intelligence) with
• A reduced ability to cope independently (impaired social functioning)
• Which started before adulthood, with a lasting effect on development.
The World Health Organization’s International official ICD-10 classification currently uses the term ‘mental retardation’, however it is due to be reviewed by 2017 which may include a change of terminology. The other main classification index, The Diagnostic and Statistical Manual (DSM) which replaced the term ‘mental retardation’ to ‘intellectual disability’ in the recent update (DSM-V).
Learning disability is categorised into mild, moderate, severe and profound, however categories are often criticised for not incorporating social or adaptive functioning or changes in IQ score through someone’s life. It is recognised that IQ scores are not fixed through someone’s life, although they do offer a guide of intellectual ability. The ICD-10 defines 4 degrees of learning disability as:
• 50-69 – mild learning disability
• 35-49 – moderate learning disability
• 20-34 – severe learning disability
• below 20 – profound learning disability
It is important to recognise the difference between learning disability and learning difficulty, with the latter being an educational term and includes issues like dyslexia or dyspraxia.
BILD – www.bild.org
ICD-10 Version: 2015 – http://apps.who.int/classifications/icd10/browse/2015/en#/F70-F79
RCN – http://www.rcn.org.uk/development/practice/social_inclusion/learning_disabilities
Signs & Symptoms
Learning disability is a broad term and signs and symptoms vary enormously, however someone with a learning disability may have difficulty with:
• motor control
• orientation (time and space)
The person may have symptoms of:
• low self esteem
• social problems
• poor memory
• attention deficit disorder
• impulsivity, restlessness or easily distracted
• unable to read, listen or organise thoughts
• problems speaking, writing, spelling or math
• drop out of school
• have conduct disorder
It is important to remember that everyone is an individual so their presentation will vary. The above are common areas connected with learning disability to provide an overview of the signs and symptoms.
Mencap – https://www.mencap.org.uk/about-learning-disability/about-learning-disability
The prevalence rate of learning disability varies as the vast majority of learning disability is not detectable at birth and this is problematic for recording purposes. The current prevalence is estimated to be 2-3 % of the UK population which was projected to rise by around 1% per annum for the next 10 years with an overall growth of 10% by 2020 (DOH/Michaels 2008).
The DOH has suggested that mild learning disability is more common and that 30% of the population with learning disability will have severe or profound learning disabilities. This group generally requires lifelong support to maintain a valued lifestyle.
It is estimated 150,000 are born or are later diagnosed with learning disability per year (Oxford Handbook, 2009), with a higher prevalence in boys (Foundation for People with Learning Disabilities, 2015). In 2011 it was estimated that there were 286,000 children in the UK aged 0-17 with a learning disability (with 200,000 of these within Special Educational Need (SEN) assessment stage or have a Statement of SEN. Overall there are approximately 191,000 people with learning disabilities in England and of these 21% are known to learning disabilities services. (Emerson et al, 2011)
• Public Health England 2011 Emerson et al http://www.improvinghealthandlives.org.uk/publications/1063/People_with_Learning_Disabilities_in_England_2011
• Foundation of people with learning disability –
Promoting Positive attitudes
There is a lot of stigma linked to learning disabilities which can leave someone feeling isolated and excluded from society. Therefore it is important to focus on the things people can do to promote positive attitudes. The social model of disability says that the disability is caused by the limitations society puts on the person, by the way it is organised that places barriers in the way rather than the person’s impairment. Therefore the social model looks for ways to increase life choices by removing these barriers to enable people to be as independent as possible.
1. Reflective Account (1St)
Having read the above section, write a reflective account of a situation where the label of ‘learning disability’ may have restricted the care and support that the person received or what was done to prevent it restricting someone’s care.
Action plan Feelings
Causes and Manifestations
It is difficult to answer precisely what causes a learning disability as the term is so diverse and covers such an array of conditions. In addition to this each person presents with individual issues, abilities/disabilities and limitations. Gates (2007) suggests that a meaningful way of ‘contextualising ‘learning disabilities’ is to think of it as an umbrella term under which all affected individuals are described as having varying degrees of impairment of intellectual and social functioning.’
Mild learning disability
Among people with a mild learning disability about 50% of cases have no cause identified. A number of environmental and genetic factors are significant, although only 5% of people in this category have been found with a clear diagnosed genetic cause. Higher rates are found in some social classes which suggests factors such as large families, overcrowding and poverty are important. Research increasingly points to organic causes, such as exposure to alcohol and other toxins prior to birth, hypoxia and other problems at the time of birth, and some chromosomal abnormalities. (BILD, 2010)
Severe or profound learning disability
Chromosomal abnormalities account for about 40% of the cases, with genetic factors cause 15%, prenatal and perinatal problems 10% and postnatal a further 10%. About 25% of cases are of unknown cause (BILD, 2010).
There are a number of causes of learning disability and it is important to understand the cause for a number of reasons. Firstly the individual and their families need to know. Secondly, it is also important to distinguish between learning disability and physical or mental health problems which may be treatable. Learning disability, as far as we know, is not treatable like a disease or a physical or mental illness (BILD, 2010). Thirdly, there are forms of learning disability or syndromes which indicate certain health issues occurring which can be monitored and/or treated. Fourthly, the need for genetic counselling for the individual and the family. It is important to recognise increasingly that people with learning disability may themselves plan to become parents.
The cause of the learning disability will help to identify at what stage in the developmental process the learning disability occurred – the pre-conceptual, prenatal, perinatal or postnatal stage which are shown below.
Stage Cause Examples
Pre-Conceptual Heredity Parental genotype
Environmental Maternal health
Prenatal Heredity Chromosomal
Perinatal Environmental Prematurity
Heredity Untreated genetic
disorders e.g. PKU*
*PKU = phenylketonuria Taken from Gates, 2007
Environmental Causes at different stages
Pre-conceptual – before conception
The health of the mother is an important factor in the health of the baby. Lower socioeconomic groups, unsupported young mothers, and women with pre-existing medical issues also have a higher rate of perinatal mortality. We also know that half of all families with children with learning disability live in poverty (Mencap, 20010).
Nutrition is important and it can take months to correct deficiencies. Mothers with pre-existing medical conditions can affect the mother and foetus adversely (Alexandra et al 1996). Phenylketonuria is an example; where a female has been treated for this in childhood, but having ceased a special diet would have increased phenylalanine in pregnancy and thus a higher risk of various defects including learning disability (Gates, 2007).
Prenatal – before birth
During this period maternal infections can result in learning disability such as viral infections like Rubella, Cytomeggalovirus and Varicella-zoster. Bacterial infections (congenital Syphillis) and Protozoal (Toxoplasma Gondi). There are also outside factors known to affect the developing foetus like:
• Toxic Agents – smoking, alcohol, drugs (illicit and prescribed), environmental pollutants (like solvents, gases, mercury, lead etc)
• Physical Factors – Radiation and excessive x-rays.
• Kernicterus (incompatibility between mother and foetus) – Rhesus factor incompatibility.
• Direct violence – foetal trauma.
• Anoxia – deprivation of oxygen to the brain
Perinatal – first 28 days of life
During this period there are factors that can cause a learning disability like:
• Low weight babies
• Asphyxia – decreased oxygen levels
• Birth trauma – can be asphyxia by cord around the baby’s neck or caused by instrumental delivery.
Postnatal – 6 weeks after birth
There are a number of factors that can result in learning disabilities such as:
• Hereditary conditions
• Childhood infections like meningitis
• Head trauma
• Toxic agents like lead poisoning
• Nutrition – poor nutrition can delay development
• Sensory and social deprivation – physical and intellectual development can be affected.
Some causes of learning disability are inherited through chromosome or gene abnormalities.
50% of learning disabilities are attributed to genetic factors and a third of these are caused by chromosomal abnormalities (Mueller & Young 2001), however this is changing all the time with increasing understanding of genetics. Chromosomal abnormalities come under two types:
• being autosomal abnormalities and
• sex chromosome abnormalities.
The three categories of autosomal abnormalities are:
• Abnormality of number. Loss or gain of chromosomes. Down syndrome is an example of where there is an extra chromosome in pair 21, or Edwards syndrome there is an extra chromosome in pair 16, 17 or 18.
• Abnormality of structure. Deletion or translocation of the chromosome. Cri-du -chat syndrome has a deletion of chromosome 5.
• Mosaicism. Varying numbers of chromosomes in the cells usually happens during the initial cell divisions. Down syndrome and Klinefelter syndrome are examples.
The best known chromosomal abnormality was first described by Dr Langdon Down 1959, but not established until 1959 when Legeune and colleagues discovered that people with Down syndrome have 47 chromosome pairs instead of 46. It is caused by the presence of an extra chromosome 21.
Occurs in 1 in 600 births and is referred to as the most common of the trisomic (extra whole chromosome) conditions. There is a relationship between the maternal ages, with a sharp rise in the risk at a maternal age of 40 which continues to rise steeply with age.
There are many characteristics associated with Down syndrome, however not all people will exhibit them all. The head is brachycephalic (small) and round with reduced cranial capacity. Hair is dry, sparse and fine. The face is flat, small ears and underdeveloped lobes. The eyes are usually upwards and slanted. There is delayed development of teeth. The individual is usually small with a broad build. Genitalia in the male may be underdeveloped and fertility compromised, but should not be assumed sterile. Females also have reduced fertility with an estimated third that ovulate. The learning disability varies among individuals, although developmental milestones may be slower.
Around 40% have congenital heart disease; about 20% suffer a thyroid disease, and as adults may experience features of Alzheimer’s disease.
Edwards is caused when there is an extra chromosome 18. The incidence rate is around 1 in 8000 births and is the second most common autosomal defect. There are degrees of this syndrome depending upon the number of cells affected with the severest having every cell in the body with three 18 chromosomes.
The characteristics are elongation of the skull with a receding chin. The eyes can be underdeveloped and an abnormal distance apart. The ears are small and low with an abnormal shape. There are abnormalities to fingers and feet with some degree of spasticity. The degree of learning disability is usually severe with associated handicaps like congenital abnormalities of the heart, organs and nervous system. The prognosis is poor with most children not reaching adulthood.
Caused by the deletion of the short arm of chromosome 5. The incidence is rare affecting 1 in 50000. The characteristics include a high-pitched wailing cry, tendency to be small, downward slant of the eyes, small chin and eyes low set. Degree of learning disability is normally severe with limited development of speech.
Sex Chromosome Abnormalities
These are additions and deletions to the sex chromosomes and can be divided into four main groups:
• XO Turner Syndrome
• XXX Triple X Syndrome
• XXY Klinefelter Syndrome
• XYY Syndrome
Turner (XO) syndrome
Affects 1 in 2500 females. The individual presents as female but does not have ovarian tissue or sex hormones and they are sterile. They are of short stature, have low hairline and webbing of the neck where there are lateral folds of skin on the neck.
Triple X (XXX) syndrome
Only occurring in females with an incidence rate of 0.1%. The symptoms vary along with the degree of learning disability. Skeletal and neurological problems are associated and psychotic disorders are more frequent than the general population.
Klinefelter (XXY) syndrome
Only affecting males where there is an additional X chromosome. The incidence rate is 1 in 750 making it relatively common (Candy, Davis and Ross 2001). Development appears unaffected until puberty where secondary sexual characteristics fail to develop. For example the testes can be small/undescended, sparse body hair and around 30% show enlargement of the breast. Their lower limbs tend to be long and they are taller than average. There is a higher risk of osteoporosis and leg ulcers. Learning disability does not necessarily follow, however where it is present it tends to be mild.
Incidence is 1 in 1000 males. Learning disability, psychopathic and criminal behaviours were once thought to be characteristics, however this is not the case. Where learning disability is present it tends to be mild.
Gene abnormalities come under four types:
• Autosomal dominant inheritance
• Autosomal recessive inheritance
• Sex-linked inheritance
• Polygenic inheritance
This is fairly uncommon as lethal dominant genes are nearly always expressed, resulting in the death of the embryo, foetus or child (Gates 2007).
Examples of these are:
• Tuberous sclerosis – approximately 60% have some degree of learning disability
• Neurofibromatosis – about a third have a learning disability
• Prader-Willi syndrome – learning disability is described as milder, but more severe impairment does occur.
Autosomal recessive genes
Many of these are associated with learning disability:
• Phenylketonuria – a disorder of protein metabolism which if left untreated results in learning disability
• Galactisaemia – an abnormality of galactose metabolism and if untreated learning disability is evident.
• Tay-Sachs disease – a disorder of the lipid metabolism. Mental deterioration is progressive.
• Hurler syndrome – the connective tissue has an abnormal storage of mucopolysaccharides. Death usually occurs during adolescence due to physical and mental retardation.
X-linked recessive genes
A number are associated with learning disability. The male is affected whereas the female can be the carrier.
• X-linked hydrocephalus – without surgical intervention brain damage can occur.
• Hunter syndrome – Only affects males and there is a slow rate of physical and mental deterioration.
• Fragile X syndrome – the most common form of inherited learning disability with 1 in 4500 males and 1 in 8000 females. The degree of learning disability varies.
Thought to be of poly-genic origin.
• Sturge-Weber syndrome – affects the trigeminal nerve. Common features are epilepsy and spasticity. Learning disability can be severe.
• Cornelia de Lange syndrome – also known as Amsterdam dwarfism. Learning disability is present to some degree but often severe.
• Hydrocephalus – excessive fluid in the brain. If undetected and untreated can result in brain damage and severe learning disability.
• Hypothyroidism – a deficiency of thyroxin. Stature is small and severe learning disability.
As described above, some disabilities are preventable with healthy life choices. The important factors to prevention are health education, good antenatal, prenatal and early childhood health care are all key factors (Logsdon, 2010).
2. Reflective Account (2nd )
Having read the above section, write a reflective account of a situation where knowing, or not knowing, the causation of learning disability helped inform, or hindered, clinical care.
Action plan Feelings
Policy and Law
The Disability Discrimination Act 1995 which has been repealed by the Equality Act April 2010 (Government Equalities Office, 2010) which will become law in October 2010, makes it unlawful to discriminate against people with a disability including those with a learning disability. This Act imposes a duty to make reasonable adjustments to avoid disadvantage. This means that reasonable steps must be taken to avoid the disadvantage. Therefore people with learning disability should receive the same healthcare as everyone else. For example a reasonable step would be for staff to be trained to support someone with a learning disability.
“Reasonable adjustments” must be made to the way that services are delivered in order to meet the needs of disabled users.
For people with learning disability this may include:
• longer appointments
• flexibility with the time – e.g. first or last appointment
• for surgical interventions – information about the procedure in accessible format (easy read), visits before, being first on the list, etc
• telephone calls to remind of the appointment
• ensuring the carer is informed as the person may not be able to tell them themselves, remember or understand.
The Joint Committee of Human Rights (House of Lords and House of Commons 2010) stated it is still necessary to emphasise that adults with learning disability have the same rights as anyone else. However there are still cases and the most recent Valuing People (DOH, 2010) update show that rights to humanity, dignity, equality, respect and autonomy are still not being met.
Each of the four UK countries has its own Government policy on how the needs of people with learning disability should be met. Common themes throughout these policies are:
• People with learning disability are equal citizens, who have the same rights as any other person
• The right to be offered the same opportunities as other citizens
• The right to be independent
• Social inclusion should be a reality for people with learning disability
• Empowering people with learning disability to make their own choices
The Mental Capacity Act 2007 introduced a new criminal offence of ill treatment or neglect of a person lacking capacity. It put into statute the principle that everything must be done in the best interest of the patient. Several investigations into services for people with learning disability have demonstrated in the last few years that quality standards are met on a patchy basis.
You must not assume someone lacks capacity. In fact there is presumption of capacity for every individual aged 16 and over. If you have reason to believe an individual may lack capacity, you will need to ensure that you have made every effort to support the person to understand the decision which needs to be made, and support them to make a decision where-ever possible by using where appropriate communication tools such as sign language, pictures, easy read formats, etc.
From 1st October 2009 the Deprivation of Liberty Safeguards, often referred to as DOLS, were brought into effect. They were developed out of the restrictive treatment of someone with a severe learning disability, commonly referred to as the Bournewood judgement (DOH, 2008).
These are safeguards cover people with learning disability and are designed to ensure:
• people can be given the care they need in the least restrictive regimes
• prevent decisions that deprive people of their liberty unless such a deprivation is in the best interests of the individual, designed to protect them from harm and is the least restrictive option
• provide safeguards for vulnerable people
• provide them with rights of challenge against unlawful detention
• avoid unnecessary bureaucracy
Independent Mental Capacity Advocates (IMCA) were established as part of the Mental Capacity Act 2005 . An IMCA is someone appointed to support and represent a person who lacks capacity when they need to make decisions about life-changing decisions. These decisions include long term care moves, serious medical treatment and sometimes adult protection cases and carer views.
The Care Act (2014) makes it clear that Safeguarding Adults is everyone’s responsibility. It imposes a duty on councils with Local Authorities, NHS bodies, Police Forces and other partners to develop multi-agency codes of practice to prevent and investigate abuse. This report makes specific reference to the communication needs of people with learning disability and the need to take these into account when investigating reports of abuse.
People with learning disabilities are vulnerable to all types of abuse, and sadly Winterbourne View Hospital is a recent example of this. The domains of abuse identified in the Care Act (2014) are briefly described below and you will be able to recognise most of these within Winterbourne View.
• Physical abuse – The non-accidental infliction of physical force that results (or could result) in bodily injury, pain or impairment including; assault, hitting, slapping, pushing, misuse of medication, restraint or inappropriate physical sanctions, accumulation of minor accidents without seeking medical assistance.
• Domestic abuse – With effect from 01.04.2013 the Home Office extended the definition of Domestic Violence. The definition is:
o ‘Any incident or pattern of incidents of controlling, coercive or threatening behaviour, violence or abuse between those aged 16 or over who are or have been intimate partners or family members regardless of gender or sexuality.’
• Sexual abuse – Direct or indirect involvement in sexual activity without consent. This could also be the inability to consent, pressured or induced to consent or take part, including rape, indecent exposure, sexual harassment, inappropriate looking or touching, sexual teasing or innuendo, sexual photography, subjection to pornography or witnessing sexual acts, indecent exposure and sexual assault or sexual acts to which the adult has not consented or was pressured into consenting.
• Psychological abuse – Acts or behaviour which impinges on the emotional health of, or which causes distress or anguish to individuals. This may also be present in other forms of abuse. Some examples include: emotional abuse, threats of harm or abandonment, deprivation of contact, humiliation, blaming, controlling, intimidation, coercion, harassment, verbal abuse, cyber bullying, isolation or unreasonable and unjustified withdrawal of services or supportive networks.
• Financial or material abuse – Unauthorised, fraudulent obtaining and improper use of funds, property or any resources of a vulnerable person. Examples including theft, fraud, internet scamming, coercion in relation to an adult’s financial affairs or arrangements, including in connection with wills, property, inheritance or financial transactions, or the misuse or misappropriation of property, possessions or benefits.
• Modern slavery – encompasses slavery, human trafficking, forced labour and domestic servitude. Traffickers and slave masters use whatever means they have at their disposal to coerce, deceive and force individuals into a life of abuse, servitude and inhumane treatment. Possible indicators include Poor physical appearance, isolation, poor living conditions, few or no personal effects, restricted freedom of movement, unusual travel habits, reluctance to seek help.
• Discriminatory abuse – Discriminatory abuse exists when values, beliefs or culture result in a misuse of power that denies mainstream opportunities to some groups or individuals. Examples including forms of harassment, slurs or similar treatment; because of race, gender and gender identity, age, disability, sexual orientation or religion.
• Organisational abuse – institutional abuse occurs where the culture of the organisation (such as a care home) places emphasis on the running of the establishment and the needs of the staff above the needs and care of the vulnerable person including neglect and poor care practice within an institution or specific care setting such as a hospital or care home, for example, or in relation to care provided in one’s own home from domiciliary services.
• Neglect and acts of omission – ignoring or withholding physical or medical care needs which result in a situation or environment detrimental to individual(s). Ill-treatment and wilful neglect of a person who lacks capacity are now criminal offences under the Mental Capacity Act. Examples including ignoring medical, emotional or physical care needs, failure to provide access to appropriate health, care and support or educational services, the withholding of the necessities of life, such as medication, adequate nutrition and heating.
• Self-neglect – this covers a wide range of behaviour neglecting to care for one’s personal hygiene, health or surroundings and includes behaviour such as hoarding. Self-neglect may or may not be a safeguarding issue, however agencies must assess concerns raised under their statutory duties; having consideration for an individual’s right to choose their lifestyle, balanced with their mental health or capacity to understand the consequences of their actions.
• Honour Based Abuse (including Forced Marriage and Female Genital Mutilation) – Violence and abuse in the name of honour covers a variety of behaviours (including crimes), mainly but not exclusively against women where the person is being punished by their family and/or community for a perceived transgression against the ‘honour’ of the family or community.
Unfortunately people with learning disability are vulnerable to abuse and as a professional you will need to be competent at recognising the signs of abuse. You will need to need to be familiar with your organisations’ safeguarding policy and understand the process of initiating a safeguarding alert.
3. Reflective Account (3rd)
Having read the above section, write a reflective account about your role in supporting some with safeguarding issues.
Action plan Feelings
Equalities Act 2010 Government Equalities Office –
Mental Capacity Act, 2005 Office of Public Guardian –
Safeguarding of Vulnerable Adults – Essex Safeguarding Adults Board http://www.essexsab.org.uk/
The Government White Paper ‘Valuing People’ (2001) followed by ‘Valuing People Now’ (2009) says that people with learning disability should have: Independence, Choice, Rights and Inclusion. Effective communication is fundamental to enable someone with learning disability to achieve these principles.
People with learning disability may have difficulties with spoken and written language, coordination, attention, or self control. This is particularly important to those working in a mental health setting. Some people with learning disability find it difficult to communicate pain or distress in an understandable way and may express this by changes in behaviour or personality.
Communication difficulties occur to varying degrees, depending upon the type and extent of learning disability and the presence of an associated physical disability such as cleft palate, cerebral palsy or hearing impairment. There is an increasing recognition that difficulties with communicating over a lifetime often contribute to low self esteem, social isolation and loneliness, lack of trust, frustration and anger. Finding ways in which people with learning disability can communicate, and ways other people can communicate with them, can make a big difference to their quality of life.
So how can we help people with learning disability using our services to communicate what they are thinking and feeling?
• help them to feel secure and safe from harm
• spend time to develop a rapport with them
• ensure they have as much choice and control over their treatment as possible
• encourage and support them to build social networks
• support them to improve their physical health
People with learning disability do not have one recognised tool for communication, and are often dependent on professional intervention to develop an individually tailored communication plan. Locally in Essex there is a project called Inclusive Communication Essex (ICE) which is establishing consistency in communication methods and tools across Essex. There are a variety of communication aids which can help communication for people with learning disability, e.g. from organisations such as those below.
4. Reflective Account (4th)
Having read the above section, write a reflective account about your role in supporting some with capacity issues.
Action plan Feelings
BILD – http://www.bild.org.uk/information/factsheets/
Change Bank – www.changepeople.co.uk
ICE – http://essexice.co.uk/
Equalities Act 2010 Government Equalities Office –
Nursing people with learning disability
The Inquiry at Winterbourne View in 2012 highlighted the terrible consequences of failed care for people with learning disability. Whilst this was not reflective of all services for people with learning disability, it does highlight how vulnerable people with learning disability are and how they can be segregated from society. The Francis Report in 2013 further highlights our responsibility to ensure vulnerable people are advocated for and given specific nursing care to ensure their needs are met adequately. Sadly reports like ‘Death by Indifference’ (Mencap 2012) highlight that people with learning disability are still dying from avoidable causes and in some cases without pain relief.
People with learning disability have the same rights of access to mainstream statutory services as any other citizen such as GP, dentist and secondary services. It is likely that people may well need to use these services more often due to the co-existing medical conditions that they are at risk of. Whatever service you work in you will need to be equipped with the skills to support people with learning disability.
All registered nurses are bound by the NMC Code of Conduct which refers to all the skills necessary to support and nurse someone safely with a learning disability. For example:
• Treat people as individuals and uphold their dignity
• Listen to people and respond to their preferences and concerns
• Meet people’s physical, social and psychological needs
• Act in the best interests of people at all times.
• Respect people’s right to privacy and confidentiality.
• Always practice in line with the best available evidence.
• Communicate effectively.
• Work cooperatively
• Act without delay is you believe that there is a risks to patient safety
These are just some of the statements in the NMC Code of Conduct (2015) that you will sign up to when you register. This code of conduct outlines the basic duties as a nurse which as you can see enable all nurses to meet the needs of someone with a learning disability.
There are many ways you can help people with learning disability, particularly when they are using your services. Just taking more time and being more observant can make a big difference in helping the person feel more relaxed and comfortable. Also to think about the diagnosis carefully, taking into account the learning disability factors that can skew the information. Remember to ask the individual and/or family/carer if they have a Communication Passport or a Health Action Plans. Communication Passport will tell you how best to communicate with the person and Health Action Plan will have their health information in.
Things to remember:
• Be aware of any special needs, such as sensory impairment
• Be aware of contra-indications from the cause/type of learning disability
• Put information in an accessible format
• Carry out assessments in familiar settings
• Remember to include the carer if appropriate
• Minimise distractions
• Be aware of the person’s attention span and act accordingly
• Use open ended questions
• Ensure your conversations are jargon/terminology free
• Use concrete terms
• NMC Code – http://www.nmc.org.uk/code/
• Health Action Plans http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPo licyAndGuidance/Browsable/DH_4098111
• RCN, 2013 Guidance for nursing people with learning disabilities. https://www.rcn.org.uk/__data/assets/pdf_file/0004/78691/003024.pdf
Physical Health Needs
People with learning disability represent a significant section of society who require input from resources who are skilled to meet their healthcare and social care needs.
This group of the population also have higher health needs than the general population and are 58 times more likely to die before the age of 50 than the general population (DOH, 2008). This is partly explained by the conditions associated with learning disability that increase the risk of premature unavoidable death. For example, almost half of all people with Down syndrome have congenital heart problems, higher than the general population, and they are also at higher risk of developing Alzheimer’s disease (Holland et al 1998) and an increased risk of gastrointestinal issues and cancer (DOH, 2008).
However early death may also be preventable to some degree. Up to a third have an associated physical disability, most often cerebral palsy. This puts them at risk of postural deformities, hip dislocation, chest infections, eating and swallowing problems (dysphagia), gastro-oesophageal reflux, constipation and incontinence. There is also a tendency to have osteoporosis at a younger age and suffer more fractures.
Around a third have epilepsy which is 20 times higher than the general population, and more cases are harder to control (Branford, 1998), along with complex and diverse types of epilepsy in this group (Gates, 2007). Sudden deaths in epilepsy (SUDEP) rates are highest for children with learning disability (NICE, 2004). Additional to these identified risks there are difficulties in diagnosis due to the communication issues and reliance on the carer to keep records of seizures.
Mental Health Needs
Mental ill health is more common in people with learning disability, both in children and adults (BILD, RCN, 2007). It is estimated that 25-40% of people with learning disability have additional mental health needs (Mind, 2009). The following examples
are taken from the Oxford Handbook, 2009.
• Schizophrenia – at least 3 times higher than in the general population.
• Anxiety disorders – higher levels of anxiety related behaviours then rest of population. Rates vary between 5% – 27%
• Dementia – increased risk of early onset dementia. Rates for people with learning disability are around 16% in 65-75 year age group, 24% of the 65-84 year age group, and 70% in 85-94 year age group. (People with Down syndrome are even higher.)
• 50 – 60% of dementia in people with learning disability is of the Alzheimer’s type.
There has been an emphasis on improving access to mental health services for people with learning disability over the last decade. The Green Light For Mental Health Tool Kit is a self audit tool kit that some mental health trusts use to measure how well they are delivering services to people with learning disability. The tool kit is a ‘RAG’ (Red, Amber, and Green) system which requires services to put action plans in place to achieve green. In addition to this Monitor, the organisation that accredits trusts with ‘foundation’ status also requires mental health trusts to evidence that they are supporting people with learning disabilities to access services. Since Winterbourne View and Staffordshire Hospital the Care Quality Commission have focused on how services ensure people with learning disability are supported within services, and in particular how concerns about care are raised. One of the main issues is the length of admissions for people with learning disabilities, which is known to be longer than the general population. This remains an issue even after closures of the large institutions. This means that attention must be paid to discharge planning to try and avoid lengthy admissions for this vulnerable group of people.
Co-morbid conditions like autistic spectrum disorders and attention deficit disorder are more common (Allington-Smith 2006), but it is important to understand these are not a learning disability. There is a higher prevalence of these conditions in people with learning disability, but on their own they do not equate to a learning disability.
The RCN guidance on ‘Mental health nursing of adults with learning disabilities’, (2010) provides guidance to nurses. This guidance aims to provide understanding and ability in supporting the mental health needs of people with learning disability, but also provides examples of good practice and joint working. Feeling Down (Foundation for People with Learning Disabilities, 2014) sets out 9 recommendations for improving the mental health care of people with learning disabilities.
5. Reflective Account (5th)
Having read the above section write a reflective account of a situation where you have supported someone with learning disability, focusing on the approaches you used, or would use next time, to help with the assessment.
Action plan Feelings
• RCN guidance 2010’ Mental health nursing of adults with learning disabilities’ https://www.rcn.org.uk/__data/assets/pdf_file/0006/78765/003184.pdf
• NDTi ‘Reasonable Adjusted’ http://www.ndti.org.uk/uploads/files/NHS_Confederation_report_Submitted_version.pdf
• ‘Feeling Down’ 2014 Foundation for people with learning disabilities
Test Your Knowledge
Now you have completed the Introduction to Learning Disabilities Workbook there are some multiple choice questions and some practical scenarios. These will help you to consolidate what you have learnt in the workbook. As a guide the pass rate for the multiple choice questions is 75% which is 9 correct answers out of the 12.
The scenarios are there to support you to think about how you would adapt your skills as a nurse to support someone with learning disability. There are some main areas you are expected to cover within the scenarios. As a guide the answer section shows the areas you should have identified.
1. The prevalence rate of learning disability in the UK population is
estimated to be ……
A 2 – 3%
B 12 – 13%
C 21 – 23%
2. Complete the following statement.
The prevalence rates of learning disability in the male population compared to female population is…….
A Slightly less
B The same
C Slightly higher
3. Complete the following statement.
Recording of learning disability can be problematic because …..
A There are too many computer systems in use.
B The vast majority of learning disability is not detectable at birth.
C Records are not updated to show when people recover from learning disability.
4. Which statement completes the sentence? The cause of learning disability is…………….
A Unknown in 50% of people with severe learning disability and 25%
of people with profound learning disability
B Unknown is about 25% of people with mild learning disability and
50% of people with severe or profound learning disability
C Unknown in about 50% of people with mild learning disability and 25% of people with severe or profound learning disability
5. Which of the following are examples of heredity causes of learning disability?
A Maternal health
E Parental genotype
6. Maternal health can be an environmental cause of learning disability in which of the following stages?
A Pre-conceptual stage
B Prenatal stage
C Perinatal stage
D Postnatal stage
7. Autosomal chromosomal abnormalities can be put into which of the following?
A 2 categories
B 3 categories
C 4 categories
8. Down syndrome is the most known type of learning disability and is caused by which of the following?
A Childhood infections like meningitis
B Birth trauma
C Chromosomal abnormality
9. Which of the following number of main groups can Sex Chromosome abnormalities be divided into?
A 2 main groups
B 3 main groups
C 4 main groups
10. Which of the following causes Klinefelter syndrome?
A A sex chromosome abnormality
B An autosomal abnormality
C Toxic agents
11. Gene abnormalities come under one of the following.
A 1 type
B 2 types
C 3 types
D 4 types
12. Which statement completes the following sentence?
The Mental Capacity Act is a significant law for people with learning disability as ……..………
A it ensures ‘reasonable adjustments’ are made to prevent exclusion
B it ensures that every effort is made to support the person to understand the decision
C it assumes they do not have capacity so decisions can be made on their behalf
Scenario 1 (6th)
20 year old female called Jo comes to the family planning clinic on her own. The appointment is only 10 minutes and the clinic is very busy. She has a mild learning disability and is diagnosed with Down syndrome. At 16 her parents supported her to have a contraceptive implant, and she asks you to remove it. She has been sexually active and tells you she has several boyfriends. Jo lives independently in her own flat near her parents. She tells you that her parents visit twice a week.
A Consider the Equality Act 2010 and do you need to make any reasonable adjustments?
B Consider the Capacity Act and what actions should you take?
C Identify the health risk areas and consider your plan of action for each area.
Scenario 2 (7th)
56 year old man called Joe arrives at your clinic. He has a diagnosis of bipolar disorder and moderate learning disability. You have seen him a few times before, but previously he has been supported by his elderly mother and you remember he was always very smart. This time however he is on his own and his clothes are unwashed, he has grown a beard, looks dirty and you also notice a strong odour that indicates he has not washed for quite some time.
His speech is difficult to understand and after several attempts to understand you use the anatomy and diet posters on the wall and Joe is able to point. You identify he has a painful tooth and has not been eating. You suspect he has not been taking his medication. Joe also tells you his mum has gone but he has a new friend called Sam who helps him by taking his money and looking after it for him.
A Identify the risk areas and prioritise them.
B Consider Safeguarding Vulnerable Adults and what actions if any should you take?
C Consider your plan of action to address the following for Joe:
Section 7 – References
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Alexandra.J, Levy.V, Roach.S. (eds) 1996 Midwifery practice: core topics 1. Macmillian, London
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British Institute of Learning Disabilities – Factsheet: Learning Disabilities
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Mencap, 2010 Facts about learning disability http://www.mencap.org.uk/page.asp?id=1703 (accessed 04/08/2010)
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Mueller RF, Young ID (Eds) 2001 Mathematical and population genetics. In Emery’s Elements of Medical Genetics. Eleventh edition.Edinburgh, Churchill Livingstone, 113-126.
NICE 2004 The epilepsies: The diagnosis and management of the epilepsies in adults and children in primary and secondary care (NICE CG20) http://guidance.nice.org.uk/CG20/NICEGuidance/pdf/English (Accessed 29/04/10)
NMC 2008 Code of conduct http://www.nmc-uk.org/Nurses-and-midwives/The-code/The-code-in-full/ (accessed 04/08/2010)
Oxford Handbook of Learning and Intellectual Disability Nursing 2009 Oxford University Press. ISBN: 978 0 19 953322 0
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