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Treatment of almost all medical conditions has been affected by the COVID-19 pandemic. NICE has issued rapid update guidelines in relation to many of these. This guidance is changing frequently. Please visit https://www.nice.org.uk/covid-19 to see if there is temporary guidance issued by NICE in relation to the management of this condition, which may vary from the information given below.
A learning disability is a reduced intellectual ability and difficulty with everyday activities, with onset in childhood. The term general learning disability is now used in the UK instead of terms such as mental handicap or mental retardation. The degree of disability can vary greatly, being classified as mild, moderate, severe or profound.
Children with a general learning disability find it more difficult to learn, understand and do things compared with other children of the same age. Children and adults with intellectual disabilities have an increased prevalence of health problems and their health needs are often unrecognised and unmet. They are also more likely to experience abuse and less likely to access health and other support services successfully[1, 2].
General learning disability differs from specific learning difficulty, where the person has difficulty in one area - such as in reading, writing or understanding - but has no problem with learning in other areas. Specific learning difficulties, such as dyslexia, do not affect intellectual ability.
Learning disability/intellectual impairment which arise in adulthood (eg, due to head injury) may raise similar health and social care issues but do not fall under the definition of generalised learning disabilities.
Definitions of learning disability vary but say broadly the same thing. Generalised learning disability is defined by three core criteria:
- Lower intellectual ability (usually an IQ of less than 70).
- Significant impairment of social or adaptive functioning.
- Onset in childhood.
Although the term 'intellectual disability' is becoming accepted internationally, 'learning disability' is the most widely used and accepted term in the UK.
The 2001 White Paper on the health and social care of people with learning disabilities, included the following definition of learning disabilities:
Learning disability includes the presence of:
- significantly reduced ability to understand new or complex information, or 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 ‘
A classification of mild, moderate, severe and profound has been used to describe the degree of learning disability. IQ measurement has traditionally been used to define severity:
- A person with an IQ of less than 20 would be described as having a profound learning disability.
- A person with an IQ of 20-34, a severe learning disability
- A person with an IQ of 35-49, moderate learning disability
- A person with an IQ of 50-70, mild learning disability.
However, this classification is only partially adequate, as the degree of intellectual impairment provides very little information about the person's social, educational and personal needs. It is important to treat each person as an individual, with specific strengths as well as needs. A broad and detailed assessment may be needed.
Generally it is the case that people with profound learning disabilities typically need support for long periods of time, whilst people with mild learning disabilities require a variable level and type of support, changing in response to changing circumstances.
- Epidemiological research suggests a prevalence of intellectual disability of about 2.0%.
- In 2013 there were estimated to be 1.1 million people with learning disabilities in England, including:
- 225,000 children (identified as having a Special Educational Need associated with learning disabilities - boys to girls circa 6:4).
- 900,000 adults aged 18+ (men to women circa 6:4), of whom:
- Around 23% of these adults were known to their GP as having learning disabilities.
- Around 48% of these adults were receiving Disability Living Allowance (now called Personal Independence Payment when paid to adults) or Attendance Allowance.
- These numbers are based on those using services or known to services, and on previous research by the Department of Health in 2004[7, 8].
- Approximately 1% of the population have an autistic spectrum condition. Approximately half of these also have a learning disability.
- Men with learning disabilities die on average 13 years younger than men in the general population, and women 20 years younger.
- The median age of death in death certificates of people identified as having learning disabilities rose steadily between 2008 to 2012 from 54 to 58 years. However, doctors are not specifically asked to record learning disabilities on death certificates unless the learning disabilities have a specific relevance to the circumstances leading to the death.
- Nevertheless, the population for people with learning disabilities shows a sharp reduction in prevalence rates after age 49, due to reduced life expectancy.
- A sharp increase in prevalence for males aged under 20 may reflect increased survival rates among more severely disabled children.
- The number of people with intellectual disabilities increased by 53% over the 35-year period from 1960 to 1995 as a result of improved socio-economic conditions, intensive neonatal care and increasing survival).
Around 225,000 children in England in 2013 had primary or secondary special educational needs (SEN) associated with learning difficulties. Around 80% of these had moderate learning difficulty (MLD), 1 in 6 had severe learning difficulties (SLD) and 1 in 20 had profound multiple learning difficulties (PMLD).
- SEN with learning disability is more common in boys and in children from poorer families, and amongst some ethnic groups.
- 88% of children with MLD, 22% with SLD and 17% with PMLD are educated in mainstream schools.
- There is wide geographical variation in educational approach. For children with SLD, the 10% of councils making most use of mainstream schools placed 44% or more of children in mainstream education. The 10% of councils making the least use of mainstream schools placed fewer than 8% of children in mainstream schools.
- Children with SEN associated with learning difficulties are more likely than other children to be absent from, or excluded from, school.
- Nearly 1 in 3 'looked after ' children (those in the care of local authorities) have SEN associated with learning disabilities.
- Children with learning difficulties are significantly more likely than other children to be 'looked after' by local authorities for more than 12 months. The rate per 1,000 children in 2013 was 6 for all children, 22.3 for children with MLD, 31.9 for children with SLD and 39.9 for children with PMLD.
Social care and employment figures
In 2012-2013 140,000 adults with learning disability were known to social care.
- 114,000 used some form of social care community service.
- 42,000 received some local authority home care services.
- 9,860 received some support for equipment and/or adaptations.
- 450 received a local authority-funded meals service.
- 12,600 new adult clients were fully assessed.
- 7% of those of working age with leaning disabilities (just under 10,000) were in some form of paid employment, although most for fewer than 16 hours per week.
- An additional 6% were involved in unpaid voluntary work only.
In the personal social services section adult social care survey of 2013, people with learning difficulties reported markedly more positive experiences of social care services and of their own health than any other group of people using social care.
General learning disability is a presentation, not a diagnosis. It may result from many things. For example, cause may be:
- Genetic: chromosome disorders - trisomy (eg, Down's syndrome), deletion (eg, cri du chat syndrome), sex chromosome anomaly (eg, fragile X syndrome, Klinefelter's syndrome, Turner syndrome).
- Metabolic: amino acid (eg, phenylketonuria), carbohydrate (eg, galactosaemia), lipid (eg, Tay-Sachs disease, Gaucher's disease, Niemann-Pick disease), mucopolysaccharidoses (eg, Hurler's syndrome).
- Cerebral degeneration: eg, gangliosidoses, leukodystrophies.
- Structural disorders: eg, tuberous sclerosis, familial hydrocephalus, neurofibromatosis.
- Nutritional deficiency: eg, iodine deficiency.
- Congenital infection: eg, cytomegalovirus, rubella, toxoplasmosis.
- Drugs: eg, phenytoin, alcohol.
- Cerebral malformations: eg, holoprosencephaly, lissencephaly.
- Antenatal: eg, pre-eclampsia, antepartum haemorrhage, premature labour.
- Intrapartum: eg, prolonged labour, trauma, asphyxia.
- Neonatal: eg, intraventricular haemorrhage, hypoglycaemia, meningitis, severe neonatal jaundice.
- Accidental or non-accidental injury.
- Infection: eg, encephalitis, meningitis.
- Anoxia: asphyxia, status epilepticus, near drowning.
- Metabolic, endocrine: hypoglycaemia, hypernatraemia, hypothyroidism.
- Poisoning: lead, carbon monoxide.
This will depend on the cause. It would typically include:
- Poor performance on tasks such as learning, short-term memory and problem solving.
- Association with specific congenital syndromes - eg, Down's syndrome, fragile X syndrome.
- Challenging behaviour: this is commonly associated with learning disability and may be a presenting feature.
Assessment needs to be comprehensive when considering cause, and should include family history, birth history, functional disability and associated medical, psychological and social difficulties.
General learning disability can affect any or every aspect of an individual's physical and psychological function. It also impacts on their ability to access and engage with help and support, their opportunity to realise their potential, the chance of their experiencing other causes of deprivation, the quality of service they receive from health and social care and their life expectancy. Problems are listed individually but clearly they will overlap with one another and may be present in many combinations and degrees.
- Motor and mobility problems.
- Abnormalities of movement.
- Speech, hearing and visual impairment.
- Urinary and faecal incontinence.
- Increased risk of obesity, fractures.
- Poor oral health (including dental caries and loss of teeth).
- Poor diet, increased rates of constipation and gastro-oesophageal reflux disease.
- Lack of physical exercise.
- Sleep disorders.
- Increased risk of chronic obstructive pulmonary disease.
- More frequent physical disorders. The most common physical health problems are epilepsy, mobility problems and sensory problems.
- Disorders of vision and hearing - are also more frequent.
- Adults with learning disability are more likely to smoke tobacco.
- Adults with learning disability are less likely to access health promotion activities.
- Adults with learning difficulty are more likely to be exposed to social determinants of poorer health (greater material hardship, greater neighbourhood deprivation, reduced community and social participation).
The following are more common in patients with learning disabilities:
- Anxiety and depressive disorders.
- Personality disorder.
- Early-onset dementia.
- Hyperactivity and attention deficit hyperactivity disorder.
- Eating disorders, including rumination, food faddiness, anorexia nervosa and bulimia nervosa..
- Difficulty accessing care and support: the stigma associated with learning disabilities may lead to an unwillingness for those affected to use specialised services or self-identify as having learning difficulties:
- This has probably been exacerbated by a decrease in surveillance by post-education health and social care services, and the increased 'tightening' of eligibility criteria to ration access to specialist support.
- Poor self-care, which may affect hygiene, diet, exercise, physical health and mental health.
- Lack of a supportive social network.
- Lack of regular employment.
- Lack of regular income.
- Harmless behaviour interpreted as aggression by others.
- Temper tantrums.
- Criminal activity can occur, deliberately through challenging behaviour, or accidentally through misunderstanding.
- Challenging behaviour: this may include threatening themselves and others but is most often disruptive rather than dangerous. It is fairly common for people with a learning disability to develop behaviour that challenges, particularly where there is more severe disability. Prevalence rates are around 5-15% in educational, health or social care services for people with a learning disability. Rates are higher in teenagers and people in their early 20s.
- People with a learning disability who also have communication difficulties, autism, sensory impairments, sensory processing difficulties and physical or mental health problems (including dementia) may be more likely to develop behaviour that challenges.
Vulnerability to abuse
- Children and adults with a learning disability are vulnerable to maltreatment and exploitation and to physical and sexual abuse and neglect. This can occur in both community and residential settings.
- In 2012-2013 there were over 20,000 referrals to local authorities regarding concerns about possible abuse of people with learning disabilities.
People with learning disabilities have a lower life expectancy than the population as a whole.
The Inverse Care Law
This famous paper written in 1971 by Julian Tudor-Hart makes a point relevant to people with learning disabilities: he states that the availability of good medical care tends to vary inversely with the need for it in the population served. In our current situation of overstretched and understaffed primary care it is likely that those who cannot make a good case for their need for medical care are at risk of doing the least well within the system.
Tudor-Hart also argues that this inverse care law operates more completely where medical care is most exposed to market forces and less so where such exposure is reduced. He commented in 1971 that any return to a 'market distribution of medical care' would further exaggerate the maldistribution of medical resources.
May 2018 - Dr Hayley Willacy recommends the latest National Institute for Health and Care Excellence (NICE) guideline dealing with the care of adults growing older with learning disability. As they grow older, people with learning disabilities have many of the same age-related health and social care needs as other people but they also face specific challenges associated with their learning disability. Many people with learning disabilities, especially those with milder disability, may not be known to health or social services, whereas others may find it difficult to express their needs and be heard. Management of their needs will therefore be more complex than for other populations. This will create substantial pressure on services, which has not yet been fully quantified. This guideline advises specifically on annual health checks and screening for this group of people.
- Management includes multidisciplinary support for both the patient and the rest of their family. The person with general learning disability and their carer(s) and family need a great deal of physical and emotional support.
- Psychological, psychosocial, and educational interventions for deprived children with low IQ have been shown to have positive effects on behaviour, on overall adjustment and possibly also on IQ.
- Psychotropic drugs are often used but rarely produce significant benefits.
- Direct support and coaching of young people with learning disability are efficient ways to improve their integration into employment.
- If a person presents with challenging behaviour, assess for physical (for example, pain such as toothache, earache) and other sources of discomfort before treating the behaviour as psychiatric.
- Focus on abilities and not disabilities. Talk respectfully, take time and explain what is happening.
- Always greet the person first, before addressing the accompanying person.
- Check if your patient has verbal capacity. There may be an imbalance between receptive and expressive language skills.
- Obtain the medical history as far as possible from the patient; otherwise, an accompanying person should complete it.
- Make it clear that, if the patient wants the accompanying person to leave at any moment during the consultation, he or she can indicate that.
- When communicating with people with learning disabilities:
- Ensure that your communication is clear, with simple language and short sentences.
- Explain any difficult or unfamiliar words.
- Check that the person has understood - eg, ask them to tell you in their own words what you have just said.
- Give the person time to respond.
- Use gestures to emphasise your communication - eg, point to the part of the body you are talking about.
- Use pictures or objects to demonstrate what you are going to do before you do it.
- Be aware of any additional disabilities such as hearing or visual impairment.
- 'Total Communication' is about using a number of communication methods together to support people with complex needs. This may include a mixture of speech, gesture and accessible written information or pictures.
Challenging behaviour often results from the interaction between personal and environmental factors and includes aggression, self-injury, stereotypical behaviour, withdrawal and disruptive or destructive behaviour. It can also include violence, arson or sexual abuse and may bring the person into contact with the criminal justice system.
- Try to discover the reasons for the behaviours: they may produce a desired effect for the person with a learning disability (for example, by producing sensory stimulation, attracting attention, avoiding demands or communicating with other people).
- Consider where the behaviour occurs. The behaviour may appear in only certain environments, or it may be considered challenging in some settings but not in others. Some care environments increase the likelihood of behaviour that challenges. This includes those with limited social interaction and meaningful occupation, lack of choice and sensory input or excessive noise. It also includes care environments that are crowded, unresponsive or unpredictable, those characterised by neglect and abuse and those where physical health needs and pain go unrecognised or are not managed.
- Multiple factors underlie behaviour that challenges. Interventions depend on the specific triggers for each person and may need to be delivered at multiple levels (including the environmental level). The aim should always be to improve the person's overall quality of life.
- Behavioural treatment methods for managing self-injury in learning disability are probably effective if used systematically by people who are well trained in such methods.
- Psychotropic drugs rarely produce significant benefits. It is of course always important to remember to treat the needs of the patient first, rather than those of the carer or institution, even though those may be the same.
Annual health screening and GP care
- GPs should recognise people with learning disabilities on their practice list. Registered rates of learning disability vary considerably around the country, with 2013 figures of 3.3% in London but 5.9% in Durham, Darlington and Teeside.
- Health checks are a reasonable adjustment in the delivery of primary healthcare to help adjust for the fact that people with learning disabilities have more difficulty than others in recognising and managing health problems and in accessing help. There is considerable variation by geographical area in the delivery and uptake of such checks.
- The current stresses faced by GPs make it increasingly difficult to find resources. The Inverse Care Law suggests that those least able to access services will lose out the most.
- Mental illness, chronic health problems, epilepsy and physical and sensory problems are more common and people with learning disabilities are less likely to receive regular health checks and access routine screening.
The Royal College of General Practitioners has published 'A Step by Step Guide for GP Practices: Annual Health Checks for People with a Learning Disability'.
- A recent randomised controlled trial on annual health screening in people with intellectual disabilities found an improvement in health in the intervention group.
- Health management plans should be evaluated annually and should include case finding, appropriate monitoring of existing health needs, promotional activities and disease prevention.
- As a minimum, the health check should include:
- A review of physical and mental health with referral through the usual practice routes if health problems are identified:
- Health promotion.
- Chronic illness and systems enquiry.
- Physical examination.
- Behaviour and mental health specific syndrome check.
- A check on the accuracy of prescribed medications.
- A review of co-ordination arrangements with secondary care.
- A review of transition arrangements where appropriate.
- A review of physical and mental health with referral through the usual practice routes if health problems are identified:
- One example of a form that can be used is the Cardiff Health Check for People with a Learning Disability.
Reducing premature death
The Confidential Inquiry into Premature deaths of People with Learning Disabilities (CIPOLD) reviewed the deaths of 247 people with learning disabilities within five Primary Care Trusts in the South West of England. It also reviewed the deaths of 58 people without learning disabilities. The study, which revealed that the quality and effectiveness of health and social care given to people with learning disabilities were deficient in a number of ways, made a number of recommendations, some of which are directly relevant to primary care, including:
- Clear identification of people with learning disabilities on the NHS central registration system and in all healthcare record systems.
- A named healthcare co-ordinator to be allocated to people with complex or multiple health needs, or two or more long-term conditions.
- Patient-held health records to be given to all patients with learning disabilities who have multiple health conditions.
- Standardisation of Annual Health Checks.
- Proactive referral to specialist learning disability services.
- Adults with learning disabilities to be considered a high-risk group for deaths from respiratory problems.
- All decisions that a person with learning disabilities is to receive palliative care only to be supported by the framework of the Mental Capacity Act and the person referred to a specialist palliative care team.
See also separate Consent to Treatment (Mental Capacity and Mental Health Legislation) and Mental Capacity Act articles.
- There may be an incongruence between receptive and expressive verbal skills. It may take time to realise that, although a person is giving clear answers, he or she does not understand the question.
- Assessment of mental capacity is specific for each individual decision at any particular time. People are considered to lack capacity for a specific decision if they have an impairment that causes them to be unable to make that decision. In assessing mental capacity you must assess whether the person is able to understand, retain and weigh the information being provided and communicate their decision.
- Behavioural problems and their consequences.
- Sexual problems: curiosity about other people's bodies may be misunderstood as sexual; inappropriate behaviour - eg, masturbation in public.
- Consequences of abuse including distress, increased mental health problems, pregnancy and sexually transmitted infection.
- Effects on the family: parental rejection, physical and emotional stress in caring for a child with learning disability, difficulty with family dynamics with other siblings, and increasing difficulty, as the child gets older, with isolation, contraception, etc.
- Most adults with learning disability have very limited economic resources and limited opportunities to discover or fulfil their potential.
- Their chances of forming long-term, supportive relationships with their peers or with life partners are much lower than for the general population and are worse according to the degree of disability.
- People with severe learning disability have a particularly poor outlook. Those with mild learning disability and borderline intelligence also do poorly in terms of adaptive functioning.
- The median age at death for people with learning disabilities is significantly younger than for those who do not have learning disabilities.
- Although life expectancy is increasing, with people with mild learning disabilities approaching that of the general population, the mortality rates among people with moderate-to-severe learning disabilities are three times higher than in the general population.
- Both the scope and pattern of disease mortality and cause-specific mortality tend to become increasingly similar to those of the general population after the age of 40 years.
- Early and effective management of problems during the antenatal period and during intrapartum care.
- Early and effective management of problems in the neonatal period and early childhood.
Further reading and references
Clinical Resources: Web pages on Learning Disabilities; Royal College of General Practitioners
Mental health problems in people with learning disabilities: prevention, assessment and management; NICE Guidelines (September 2016)
Learning disabilities: identifying and managing mental health problems; NICE Quality Standard, January 2017
van Schrojenstein Lantman-de Valk HM, Walsh PN; Managing health problems in people with intellectual disabilities. BMJ. 2008 Dec 8337:a2507. doi: 10.1136/bmj.a2507.
A Step by Step Guide for GP Practices: Annual health checks for people with a learning disability; Royal College of General Practitioners (2010)
Improving the Health and Wellbeing of People with Learning Disabilities: An Evidence-Based Commissioning Guide for Clinical Commissioning Groups (CCGs); Royal College of General Practitioners (RCGP), October 2012
Emerson E, Hatton C; Estimating Future Need for Adult Social Care Services for People with Learning Disabilities in England, Centre for Disability Research Research Report, November 2008
Emerson E, Hatton C; People with Learning Disabilities in England: CeDR Research Report 2008:1 May 2008
Heslop P et al; Confidential Inquiry into premature deaths of people with learning disabilities (The CIPOLD Report), Published by Norah Fry Research Centre, University of Bristol, March 2013
Cooper SA, Melville C, Morrison J; People with intellectual disabilities. BMJ. 2004 Aug 21329(7463):414-5.
Gillberg C, Soderstrom H; Learning disability. Lancet. 2003 Sep 6362(9386):811-21.
Care and support of people growing older with learning disabilities; NICE Guideline (April 2018)