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National Guideline Alliance (UK). Mental Health Problems in People with Learning Disabilities: Prevention, Assessment and Management. London: National Institute for Health and Care Excellence (NICE); 2016 Sep. (NICE Guideline, No. 54.)
Learning disabilities are common and many people with learning disabilities have considerable, and often multiple, mental health problems. Additionally, their health needs are often overlooked, or misattributed to their learning disabilities, resulting in unnecessary suffering which could be alleviated by access to the right care and support. Achieving equality in health and social care, and education, does not permit the assumption that one size fits all because reasonable adjustments, as outlined in the Equality Act 2010 (UK Parliament, 2010), are necessary to accommodate individuals’ disabilities.
While all NICE guidelines are relevant for people with learning disabilities, this guideline has been produced to highlight reasonable adjustments so that people with learning disabilities who have mental health problems receive equality of care and support. This guideline considers:
People with learning disabilities deserve to be equally valued and respected. This value and respect will build an inclusive society enriched by diversity, benefitting all citizens.
People with learning disabilities are people first. Sometimes, additional considerations and terms, or ‘labels’, can be helpful as a means to access appropriate care and support, and that is why the introduction to this guideline now starts by describing the terms that are used within it.
The Department of Health, in their report Valuing people: a new strategy for learning disability for the 21st century (Department of Health, 2001), uses the term ‘learning disabilities’ when the following 3 core criteria are present:
The term learning disabilities is synonymous with the term ‘intellectual disabilities’, used commonly within the academic literature. People have learning disabilities from birth, or develop them during infancy or childhood. They affect the person’s development and are long-lasting. A person with learning disabilities needs additional support with learning while at school, and often with daily activities all through their life. Because it can be more difficult to understand, learn and remember new things, they might have needs related to communication, being aware of risks and managing everyday tasks, and need support to live independently. There are many causes of learning disabilities and the cause is often unknown.
Many definitions of learning disabilities also require the person to have an IQ of less than 70, such as The International Classification of Diseases (ICD-10) Classification of Mental and Behavioural Disorders (World Health Organization, 2010). IQs are measured by intelligence tests, which allow a person’s scores to be compared with the range of scores achieved by large numbers of people on the same test. However, it must be remembered that an IQ score does not give any information about a person's social, medical, educational and personal needs, nor what help and support the person might need.
Each child inherits a vast amount of genetic information from both parents which is not shared with other children with learning disabilities and, as they grow up, their environment and experiences shape their development, interests, fears, hopes, ambitions and characteristics. So even when a person has a clear genetic cause for their learning disabilities, such as Down’s syndrome, they are unique from all other people with Down’s syndrome. While being individually unique, people with learning disabilities also share some characteristics with most other people with learning disabilities, such as needing additional support when at school, and reasonable adjustments to ensure that their health and social care is equal to people who do not have learning disabilities.
Throughout this guideline, we use the term ‘mental health problems’, and intend it to be synonymous with terms such as mental health needs, mental ill-health, mental health conditions, or mental disorders. The World Health Organisation defines mental disorders as ‘a broad range of problems, with different symptoms, [...] generally characterized by some combination of abnormal thoughts, emotions, behaviour and relationships with others.’
This guideline addresses, for people with learning disabilities, the mental disorders included in the ICD-10 (World Health Organization, 2010): common mental disorders (depression, and anxiety disorders), psychoses (schizophrenia, and bipolar disorder), dementias, eating disorders, alcohol and substance misuse, attachment disorders, and sexually inappropriate behaviour, and also other neuro-developmental conditions (autism, and attention deficit hyperactivity disorders [ADHD] and any associated mental health problems).
Problem behaviours (challenging behaviour, aggressive behaviour, destructive behaviour, and/or self-injurious behaviour) are not addressed in this guideline, as they are the focus of a dedicated NICE guideline on challenging behaviour and learning disabilities (NICE, 2015).
NICE defines a carer as a person who provides support to a partner, family member, friend, or neighbour who is ill, struggling or has a disability. This does not include paid carers (care workers), who are included in the definition of staff.
Adults with learning disabilities require support in their daily lives, and many use paid carers/support workers for this. Throughout this guideline we distinguish between family carers and paid carers.
NICE defines staff as healthcare professionals and social care practitioners, including those working in community teams for adults or children (such as psychologists, psychiatrists, social workers, speech and language therapists, nurses, behavioural analysts, occupational therapists, physiotherapists, pharmacists), paid carers (care workers) in a variety of settings (including residential homes, supported living settings and day services) and educational staff.
Learning disabilities are common. More children and young people are identified as having learning disabilities than adults with learning disabilities, because children and young people with learning disabilities are found to need additional support at school to get the best chance to learn academic skills. Additionally, people with learning disabilities do not live as long as other people, reducing the proportion of adults with learning disabilities in the population.
According to the School Census conducted in England each year, in 2014, 2.1% of children and young people attending state school had learning disabilities; 1.6% of children had moderate learning disabilities, 0.4% had severe learning disabilities, and 0.1% had profound and multiple learning disabilities (ONS, 2014). The collection of information on children with special educational needs (SEN) changed in 2015, with a new category of children requiring SEN Support, a combination of the previous School Action Plus and School Action stages in the assessment of SEN (previously, information on type of SEN was only collected for children at School Action Plus). This wider classification of SEN has given a higher figure of 3.6% of children and young people with learning disabilities; 3.1% with moderate learning disabilities, 0.4% with severe learning disabilities, and 0.1% with profound and multiple (Hatton et al., 2016). According to information provided by General Practices in England in 2014 as part of their contractual arrangements with the Government, 0.5% of their registered patients aged 18 and over had learning disabilities.
Mental health problems are very common, with 1 in 4 people experiencing mental health problems in their lifetime (McManus et al., 2009). Mental health problems contribute to 13% of the global burden of disease, much more than both cardiovascular disease and cancer (Collins et al., 2011; World Health Organization, 2008). Depression alone is the third leading contributor to the global disease burden, and in the equivalent of every 7 seconds, someone develops dementia (Ferri, 2005). Mental health problems in people with learning disabilities are even more common than in the rest of the population with a point prevalence of about 30% (Cooper et al., 2007b; Emerson & Hatton, 2007), compared with a lifetime prevalence of around 25% in the general population (McManus et al., 2009)
Evidence on the prevalence of mental health problems was recently synthesised for adults with learning disabilities (Buckles et al., 2013), and children and young people with learning disabilities (Einfeld, 2011), and was further reviewed to inform this guideline. Widely different prevalence rates have been reported, most easily explained by the differing methodologies employed (Smiley, 2005). For example, some studies have not included problem behaviours or autism within their definition of mental health problems whereas other studies have, but have not separately reported rates. Different studies have used different criteria to define types of mental health problems, and it has been shown that this impacts on the detected prevalence rates (Cooper et al., 2007b). The type and depth/quality of assessments varies. Some studies report prevalence rates including past conditions, whereas others restrict this to current conditions. The study setting also affects results. For example, studies conducted in psychiatric care settings report much higher prevalence rates than those which are population based due to the inherent sample bias. Therefore it is important to consider if studies are population-based and representative, or based on administrative samples (such as people known to Local Authorities), or special settings where findings are unlikely to generalise to the whole population with learning disabilities in England.
Considering population-based studies for adults with learning disabilities, prevalence rates of mental health problems (excluding problem behaviours) are reported to be from 14.5%, when also excluding ADHD, autism, dementia, and personality disorder, and people aged 65 and over (Deb et al., 2001), to 43.8%, in adults with moderate to profound learning disabilities only (Bailey, 2007). The largest prevalence study amongst adults in which each person was individually assessed and diagnoses made was conducted in the UK and included 1,023 adults with learning disabilities (Cooper et al., 2007b). It found that 28.3% of adults had current mental health problems (excluding problem behaviours, or 40.9% including them), similar to results from previous smaller studies within England (Cooper & Bailey, 2001; Corbett, 1979). With regards to children and young people, prevalence rates of mental health problems including problem behaviours (in view of how these studies were reported), have been reported in the range of 30% (Birch et al., 1970; Rutter et al., 1970) to 50% (Dekker & Koot, 2003). Emerson and Hatton (2007) reported a rate of 36% in 641 children and young people (aged 5–16 years) with learning disabilities in the UK, compared with 8% of 17,774 children without learning disabilities participating in the same surveys: the children with learning disabilities accounted for 14% of all children with a mental health problem.
Some specific types of mental health problems are notably more common in people with learning disabilities than in other people, including schizophrenia (Cooper et al., 2007c; Turner, 1989), bipolar disorder (Cooper et al., 2007b), dementia (Cooper, 1997a; Strydom, 2007), ADHD (Emerson & Hatton, 2007), and pica. Autism is considerably more common in people with learning disabilities (Baird et al., 2006; Emerson & Baines, 2010; Emerson & Hatton, 2007). Indeed, prevalence rates of mental health problems for children and young people with learning disabilities have been reported to be higher than for other children and young people for 27 out of 28 ICD-10 diagnostic categories, and statistically significantly so for 20 of these 28 comparisons (Emerson & Hatton, 2007).
For people with learning disabilities, their most common types of experienced mental health problems are depression (Cooper et al., 2007f), anxiety disorders (Emerson & Hatton, 2007; Reid et al., 2011), and also autism (Baird et al., 2006; Emerson & Hatton, 2007), and in adults but not children or young people, schizophrenia (Cooper et al., 2007c; Turner, 1989).
The prevalence of mental health problems is influenced by the underlying cause of the person’s learning disabilities if it has a distinctive ‘behavioural phenotype’, and other factors, which are considered further in section 2.5.
Despite the high prevalence of mental health problems, they are often not recognised in people who have learning disabilities. This can be due to presumptions around the person’s behaviour and symptoms being attributed to their learning disabilities, or changes in their presentation not being noticed by carers. This can result in prolonged distress for the person with learning disabilities.
The high prevalence of mental health problems for adults with learning disabilities is accounted for by both incident cases and enduring episodes. There are more ‘enduring’ than ‘incident’, episodes, and incidence is statistically significantly higher than that reported in the general population (Smiley et al., 2007). The incidence rate for mental health problems (excluding problem behaviours) of adults with learning disabilities over a 2-year period has been reported to be 12.6% (Smiley et al., 2007). Specifically for affective disorders, 2-year incidence was 8.3%, and for anxiety disorders it was 1.7%. Compared with the adult general population, the standardised incidence rate was reported to be 1.87 for common mental disorders (Smiley et al, 2007). For psychotic disorders, 2-year incidence has been reported to be 1.4%, and for first episode of psychosis, 0.5%, giving a standardised incidence ratio for first episode psychosis of 10.0. Full remission of psychosis after 2 years was only 14.3% (Cooper et al., 2007c). Incidence of dementia has also been reported for older adults with learning disabilities not due to Down’s syndrome, and found to be considerably higher than for the age-matched general population. At age 65 years or older, the standardised incidence ratio for dementia was 4.98 (Strydom et al., 2013).
Further studies on common mental health problems in adults with learning disabilities also show high, and enduring rates. A longitudinal study defined ‘chronic depression’ as persons who scored 5 or more on the Malaise Inventory at each of ages 23, 33, and 43 years, and reported that 15% of adults with mild learning disabilities compared with 3% of the cohort without learning disabilities met this definition (Collishaw et al., 2004; Maughan et al., 1999). Another UK longitudinal study of a 1946 birth cohort also included people with mild learning disabilities (Richards et al., 2001). The people with mild learning disabilities at ages 15, 36 and 43 years were found to have significantly more anxiety and depressive symptoms compared with other adults.
Trajectories of psychopathology have also been reported in longitudinal studies across childhood and youth. Australians aged 4–19.5 years were followed over 4 waves of data collection over 14 years. High psychopathology levels were reported, with hyperactivity more prominent at younger ages (and persisting longer in those with the greatest degree of learning disabilities), and emotional disorders emerging later in childhood (Einfeld & Tonge, 1996; Einfeld et al., 2006; Tonge & Einfeld, 2003). Similar findings have been reported from longitudinal studies with children with learning disabilities/borderline learning disabilities (excluding those with more severe learning disabilities or with additional sensory or physical disabilities) in the Netherlands (De Ruiter et al., 2007; Wallander, 2006).
Children, young people, and adults with learning disabilities who have mental health problems often have more than 1 mental health problem. Indeed, they also typically coexist with multiple physical health problems. All of the following are extremely common in children, young people, and adults with learning disabilities, and markedly more so than in the general population: problem behaviours, epilepsy, visual impairments, hearing impairments, impacted cerumen, gastro-oesophageal reflux disorder, constipation, diabetes, osteoporosis, contractures, mobility and balance impairments, injuries, thyroid dysfunction, eczema, asthma, obesity, pain (Cooper et al., 2015; Hermans, 2014; McCarron et al., 2013). There are a wide range of reasons for this, such as the underlying cause of the person’s learning disabilities, socioeconomic, lifestyle and environmental factors, suboptimal support and healthcare, and combinations of factors. Some problems can predispose to others. For example, certain psychotropic medications prescribed for mental health problems can increase diabetes risk, as can obesity, and sedentary lifestyles. Use of psychotropics (Sheehan et al., 2015), obesity (Melville et al., 2008), and sedentary lifestyles (Finlayson et al., 2009) are all common in adults with learning disabilities.
Neuro-developmental disorders also seem to cluster together, and indeed Gillberg (2010) has coined the term ‘ESSENCE’ (Early Symptomatic Syndromes Eliciting Neurodevelopmental Clinical Examination), defined as possession of a major problem in 1 or more of 10 domains: motor skills; general development; speech and language; social interaction and communication; behaviour; hyperactivity or impulsivity; hypoactivity; inattention; sleep or feeding difficulties. There is increasing genetic data to support such clustering of neuro-developmental and mental health problems (Moreno-De-Luca et al., 2013).
Co-morbidities are very important to acknowledge. Combined with the communication needs of some people with learning disabilities, co-morbidities contribute to under-recognition of other health problems, including mental health problems, or recognition of health problems only at a late stage of the disease process making recovery less likely. This is further compounded by diagnostic over-shadowing, with problems being attributed to the person’s learning disabilities and so being ignored, rather than being recognised and addressed. Multiple morbidities cause difficulties for health, social care and education staff in identifying that the person with learning disabilities may potentially have additional health needs, seeking help for the person, and also introduces diagnostic complexities for health care professionals.
Co-morbidities are not only important regarding recognition and diagnosis of other conditions, they also impact on medical treatment. Multiple conditions can result in multiple prescriptions, and several of the commonly experienced conditions are treated with drugs that bring a cholinergic burden, so together compounding cholinergic burden with potential adverse consequences such as impairing cognition (O’Dwyer & et al, 2016). Polypharmacy can introduce both medication-medication interactions, and medication-disease interactions (in addition to single medication side-effects), with adverse consequences, hence the crucial role of regular medication review, and using the minimal effective doses of medications. As people with learning disabilities may have difficulties expressing any new symptoms or side effects they are experiencing, this is particularly important. Indeed, most protocols or care pathways are designed for single conditions, and so are less relevant for a person with multiple morbidities, where deliberate deviations from single-disease protocols may well be in the person’s best interest and highly individualised care is typically needed.
Many factors can contribute to a person with learning disabilities developing mental health problems and, typically, there are several interacting factors, some of which are transactional. Moore and George (2011) provide a detailed model to conceptualise these factors across dimensions and over the life course, illustrating how functions change over time, how factors interact with the environment, and the nature of causal outcomes: ‘ACORNS’ (Accessible Cause-Outcome Representation and Notation System). A knowledge of this can help in terms of developing ways to help prevent or reduce the risk of a person developing mental health problems, and finding ways to aid recovery. At present, much of the supporting evidence we have is based on clinical experience, and cross-sectional studies of associations. Therefore definite directions of cause and effect cannot be inferred, and further research is needed to better understand the interaction of biological, psychological, social, and developmental factors in the aetiology and trajectories of mental health problems in people with learning disabilities.
Genetic studies indicate that intelligence is highly heritable and can itself be conceptualised as a spectrum of syndromes (Davies et al., 2011). Additionally, there are many genetic causes of learning disabilities and the genetic condition can cause a range of other physical, cognitive, behavioural, and mental health problems. The term ‘behavioural phenotype’ is often used to describe this. Examples of behavioural phenotypes include the high rates of dementia in middle-aged and older adults with Down’s syndrome (Oliver & Holland, 1986; Prasher, 1995); affective psychosis in Prader–Willi syndrome (Beardsmore et al., 1998; Soni et al., 2008); anxiety and autism (Kerns & Kendall, 2013); depression in phenylketonuria (Pietz et al., 1997). In these situations, it is important to avoid therapeutic nihilism and diagnostic over-shadowing, and to offer assessments and person-centred intervention and support plans as one would for other persons with learning disabilities. This is because while there is a strong genetic driver in aetiology there may be other mediating factors that have resulted in the person developing the mental health problem and its maintenance, and there are psychosocial approaches and in some cases medications that can be effective just as there are for some physical health problems.
A second consideration is physiology. Some of the genetic syndromes cause different physiology compared with other people, and this might mean that they require different medical treatments and medications, or do not require others. For example, the low rates of heart disease and low blood pressure in Down’s syndrome, differing immunology causing high rates of thyroid disorders and other immunological disorders, and different mechanisms in dementia aetiology compared with typical Alzheimer disease. There is such a large number of genetic disorders that can cause learning disabilities, so healthcare professionals need to find out if a person they are working with has a recognised disorder, and the associated physiological patterns.
In addition to behavioural phenotypes, other biological factors may be implicated in mental health problems. Some conditions do have a degree of genetic inheritance and so the person may have acquired the condition even if they did not have learning disabilities, for example schizophrenia.
Neurological conditions, which are common in people with learning disabilities, may also impact on additional mental health problems. Epilepsy is more common in people with learning disabilities, with a prevalence of about 22%, or 40% excluding people with mild learning disabilities (Robertson et al., 2015), In the general population, it is widely accepted that epilepsy increases risk of mental health problems. Studies with people with learning disabilities might also support this, but the results are a little mixed (Cooper et al., 2007b; Corbett, 1979; Deb & Hunter, 1991; Deb, 1998; Espie et al., 2003; Lund, 1985). Other physical health problems and impairments might also increase risk for mental health conditions, such as deafness and pain, and our knowledge and understanding of multi-morbidity is still developing. Deb et al. (2001) reported a statistical association between physical disability and mental health conditions. Moss et al. (1993) did not find such a relationship, and Cooper (1999) found an association between physical ill-health and dementia but not common mental disorders; but these 2 reports were specifically about older people with learning disabilities, and so comprised a larger proportion of people with mild rather than severe learning disabilities (due to premature death of people with more severe learning disabilities), so the results may not be relevant to children, young persons or younger adults with learning disabilities. Polypharmacy can also be implicated in mental health problems in people with learning disabilities.
Allostatic load is the physiological cost of making adaptive shifts across a range of physiological systems to match internal functioning to environmental demands: stressful environments negatively interact, leading to these secondary metabolic and immunological consequences. There is preliminary evidence that people with learning disabilities have higher levels of inflammatory cytokines, and increased level of oxidative stress (Carmelli et al., 2012), suggesting that allostatic load may be an underpinning mechanism for their poor mental health.
Some immutable constitutional characteristics have been found to be associated with mental health problems in people with learning disabilities, such as age (the emergence of ADHD and emotional problems at different stages of childhood; psychoses in older teenage/young adulthood and then again at old age; dementia in older age), and gender (association of male gender with higher rates of inappropriate sexual behaviours, and forensic mental health problems, and also with autism; female gender with mental health problems in general, and possibly depression).
A person’s experiences shape their personality development, approaches to life, locus of control, confidence, self-esteem, and coping strategies and capacity for resilience, impacting on mental health. For example, former experiences of abuse, neglect, or exploitation have been shown to predict incident episodes of mental health problems (Smiley et al., 2007), and low self-esteem is associated with depression (MacMahon & Jahoda, 2008).
Drawing from the general population, we know that the quality of interactions with environment is dependent on a child’s abilities to regulate early attention (Scerif, 2010), on their impact on memory (Astle & Scerif, 2011), learning (Steele, 2012), and on developing sensitivities to emotional information from infancy (Moore et al., 2002). Child environment transactions are a key factor in developing secure attachments, and in forming relationships in typically developing infants and children, and secure and sensitive early relationships are predictors of later mental health problems (Murray et al., 1996).These factors may well be relevant to children with learning disabilities, and if so suggest that interventions geared towards better attentional control may be protective (Johnson, 2012). Attentional control also interacts with emotional processing and memory biases in predicting risk for psychopathology such as anxiety (Bishop, 2009). The neural circuits supporting attention, memory, and emotional regulation overlap heavily with the pathways on which allostatic load has an influence (McEwen, 2003). This suggests that these risk and protective pathways may be modulated by environmental stress to predict later mental health problems.
Social and environment factors are likely to influence and mediate the development of mental health problems in people with learning disabilities. Exposure to social disadvantages such as lone parent family, poor family functioning, lack of parental educational qualifications, income poverty, and households with no paid employment have been shown to be associated with mental health problems in children and young people with learning disabilities (Emerson, 2015; Emerson & Hatton, 2007). Indeed, the cumulative exposure to social disadvantage was associated with higher prevalence of both emotional disorders and ADHD; and also children and young people with learning disabilities were at significantly greater risk of experiencing all types of social disadvantages (Emerson & Hatton, 2007). Another study did not find a relationship with socio-economic status (Dekker & Koot, 2003).
Socioeconomic status impacts on cognitive, social, attention, and emotional development in typically developing children (Conger & Donnellan, 2007; Kishiyama et al., 2009). This may be affected by parenting. Theoretical paradigms include (1) the family stress model of economic hardship, which predicts economic pressure leads to parental emotional and marital problems, thus impacting on parenting (for example harsher, more authoritarian parenting style and physical punishment), with parenting behaviour being the key predictor of child development, (2) the family investment model which focuses on investment of economic and human resources (for example toys, books, more stimulating and resourced activities Conger and Donnellan (2007)), with parental investment the key mediator between income and child behaviours, after controlling for parental education/intelligence and other social factors (Linver, 2002). A contrary social selection theory suggests socio-economic status is influenced by individual factors (for example intelligence and personality) facilitating social advantages, and transmitted from parent to child via a third variable (for example genetic), influencing child outcomes. Child outcomes are probably influenced by both social selection and social factors, interacting over time (Conger & Donnellan, 2007). Importantly, for typically developing children, some adverse effects are reversible with early interventions (Fisher et al., 2007; McEwen, 2003; Rutter & the English and Romanian Adoptees (ERA) study team, 1998; Zeanah, 2009), and evidence is emerging to suggest this may also be the case for children with learning disabilities (Einfeld et al., 2013). Additionally, social support has a stress-buffering role on parenting, reducing effects of poverty on typically developing children (Belsky, 1984; Seagull, 1987). It may reduce initial perception of a threat preventing a full stress response, or influence strategies employed after a full stress response.
Transactional models are likely to be relevant – the parenting environment interacting with the characteristics of the child, and the child’s behaviour having a critical impact on the parenting environment, and how parents behave when highly stressed. A meta-analysis reports increased risk of distress in parents of children with learning disabilities, especially mothers (Singer et al., 2007). Other protective factors may also influence stress levels such as parental mental health, social supports, and socio-economic factors.
Maternal optimism has been reported to moderate the relationship between child mental health problems, and maternal depression and marital adjustments (Zeanah, 2009). Consideration of such factors might provide insights to the types of parental psychological interventions, skills training and parenting programmes or supports that might then benefit these children, which may require components on parents’ belief systems.
In adults with learning disabilities, mental health problems have been found to be associated with not living with family, and this was also predictive of future episodes of mental health problems over the following 2 years. However, it was unclear if there were former reasons for having left the family home (Smiley et al., 2007). Looked after children also have very high rates of mental health problems, but the direction of causation is unclear. Living with paid carer support may result in repeated broken relationships, as staff leave posts for a wide range of reasons.
For both children and adults, life events are associated with and predictive of mental health problems (Cooper et al., 2007b; Emerson & Hatton, 2007; Hulbert-Williams et al., 2011), and also specifically with risk for depression (Esbensen & Benson, 2006; Hastings et al., 2004), and anxiety (Reid et al., 2011). Life events may occur more frequently for people with learning disabilities, and may be more likely to be multiple when they do occur, due to the numerous disadvantages they experience and their necessary reliance on others for support.
Some adults with learning disabilities have poverty of environment, with limited choices for day-time activities, problems accessing transport, limited 1-to-1 attention, and restricted social networks. They may experience social exclusion. People with learning disabilities can be the victim of bullying, harassment, hate crimes, and sadly stigma is not uncommon, and is associated with mental health problems in people with learning disabilities (Ali et al., 2012; Ali et al., 2015; Cooney et al., 2006; Jahoda & Markova, 2004).
Smoking is also reported as being related to mental health problems in adults with learning disabilities (Cooper et al., 2007a), which is similar to findings in the general population.
Across the whole population, a gradient is seen between health and ability level (Gale, 2009), so the consequences of this are most marked for people with learning disabilities. Greater degrees of learning disabilities are associated with more physical health problems and more mental health problems, although this depends in part on the specific type of mental health problem. Autism is markedly more prevalent the greater the degree of learning disabilities.
A common saying is ‘a problem shared is a problem halved’. The communication needs of some people with learning disabilities disadvantages them and their health when staff do not have capacity and skills to communicate effectively. Communication is a 2-way process, so all staff need to follow communication guidance to maximise 2-way understanding and expression.
Skills training might provide avenues to intervene or support people with learning disabilities who have mental health problems. Learning new skills, or developing and relearning skills already acquired might provide a means through to developing confidence, increasing independence, and building resilience. Such approaches might be useful adjuncts within intervention care plans.
Learning disabilities policy in England over the last 15 years has driven progress via Valuing People: A New Strategy for Learning Disability for the 21st Century (Department of Health, 2001), and Valuing People Now: A New Three-Year Strategy for People with Learning Disabilities (Department of Health, 2009). More recently, the shocking revelations on the BBC Panorama programme of the criminal and abusive actions by paid carers to people with learning disabilities living in Winterbourne View Hospital led to Transforming Care: A National Response to Winterbourne View Hospital (Department of Health, 2012), and accompanying concordat, Winterbourne View: Transforming Care Two Years On (Department of Health, 2015b), and Building the Right Support (ADASS, 2015) produced by the Department of Health and partners – the Association of Directors of Adult Social Services, Care Quality Commission, Health and Social Care Information Centre, Local Government Association, NHS England, and Public Health England. Core visions include a reduction in the number of people with learning disabilities living in hospitals, reduced length of hospital stays, and improved quality of care and life for people with learning disabilities in hospital, and in community settings. The transformation programme is aimed at changing a whole system and embedding new approaches.
Most people with learning disabilities live in the community with family or with paid carer support; however, a proportion of people are receiving treatment in, or are inappropriately resident in mental health or learning disabilities hospitals. The Health and Social Care Information Centre’s Learning Disabilities Census report for England with a census date of 30.9.15 (findings from the previous census date of 30.9.14 are in parentheses) identified 3,000 (3,230) people resident in hospitals, of whom 2,370 (2,690) had learning disabilities, and 165 (160) were children/young people. 145 (155) were experiencing a delayed discharge due to placement unavailability/lack of appropriate discharge support package. 42% (39%) were in hospital more than 50 km from their original home address, and specifically for the children and young people, 62% (44%) were more than 50 km from their home address. Provision was roughly equally split between NHS and independent sector providers.
There is an expectation that people with learning disabilities are supported to access mainstream services used by the whole population as far as possible, that reasonable adjustments are made by services to enable this, and local specialist learning disabilities teams have a role in supporting access. Learning disabilities teams also provide direct mental health assessments and care for people with learning disabilities and complex mental health problems. People with learning disabilities are registered with a general practitioner (GP), the same as for everyone else in the country (with the small exception of some communal establishments).
Local community learning disabilities teams are typically in place across England, and adopt a multi-disciplinary approach to their work with adults with learning disabilities and mental health problems (and also for some other health and care needs). Teams are often joint health and social care teams, employ staff with expertise and training in working with people with learning disabilities, and may include for example psychiatrists, psychologists, nurses, speech and language therapists, occupational therapists, physiotherapists, dieticians, social workers. In commissioning and organising services, there may be differences in local pathways and responsibilities between the local mental health services, the local learning disabilities services, and primary care. Generic child and adolescent mental health services are used by children and young persons with learning disabilities; in some cases tertiary services can provide more specialist support to these services, and in some services there are dedicated mental health services for children and young people with learning disabilities. This may be less than comprehensive in some parts of England. For children and young people with complex needs impacting upon their learning, Local Authorities now have a duty to offer Education, Health and Care needs assessments, and if indicated put in place a tailored Education, Health and Care Plan, to support the child’s development and transition through to age 25.
In addition to the drive for better integrations of services, the Government’s introduction of personal budgets and personal health budgets is intended to provide greater flexibility, choice and control over the healthcare and support people receive.
Mental health problems are under-recognised in people with learning disabilities (Hassiotis & Turk, 2012). There is some, and increasing, awareness of the problem of diagnostic overshadowing (inadvertently attributing a person’s additional mental health or physical health problems to their learning disabilities, and hence omitting to provide suitable and required care and support). This is an issue for people living in residential care or private households with paid carer support, people using primary health care, and/or using community or secondary health care services; it is an issue throughout the whole system for people with learning disabilities. It leads to under-identification of potentially treatable needs and distress, and the late identification of health needs which can then lead to impaired treatment response.
In keeping with the Mental Capacity Act 2005, all staff are accountable in ensuring that the person’s capacity to make specific decisions is assessed (on a decision by decision basis), and this underpins all aspects of their assessment and care. Capacity to make decisions must always be supported, as adjustments must be made to accommodate the person’s disabilities, such as enhancing 2-way communication and supporting sensory impairments. On rare occasions, individual decisions of the person being assessed/treated are over-ridden by the Mental Health Act, amended 2007, but these restrictions should be minimised as far as possible.
The United Kingdom is a signatory to the United Nations’ 2006 Convention on the Rights of Persons with Disabilities, with the overall purpose ‘To promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity’. There are 8 guiding principles which underpin all the articles of the Convention:
Article 19 of the Convention addresses the measures required by ‘States Parties’, countries which have adhered to the World Heritage Convention, to ensure people with disabilities live independently and are included in the community. This recognises the equal right of all persons with disabilities to live in the community, with choices equal to others, ensuring full inclusion and participation in the community. Article 25 addresses health, and actions States Parties must take to ensure the right to the enjoyment of the highest attainable standard of health and access to gender-sensitive health services without discrimination on the basis of disability. This includes the same range, quality and standard of free or affordable health care and programmes as provided to other persons, and those health services needed by persons with disabilities specifically because of their disabilities, with provision as close as possible to people’s own communities, including in rural areas.
Family are really important for most people and special for them. This of course is the same for children, young people, and adults with learning disabilities. Family also can provide considerable support, and help their family member with learning disabilities in living with and overcoming mental health problems. They typically know their family member with learning disabilities better than anyone else, and are most likely to recognise if their loved one may have a mental health problem. Provided they are given enough and the right information, they are usually best placed to help support their family member with learning disabilities in care decisions, and to make choices for family members who are children or do not have decision-making capacity to do so themselves.
Person centred services are essential for people with learning disabilities. For children and young people with learning disabilities, family centred services are also essential.
For adults who live independently with their own or shared tenancy and paid carer support, or in residential care, family often remain a very important part of their lives and support for them in managing their on-going care, and their quality of life.
Being a family carer brings many rewards. It is also associated with stress and poorer physical and mental health (Eisenhower et al., 2013; MacDonald, 2010; McGrother et al., 1996; Singer, 2006; Totsika et al., 2011; Totsika, 2011). The mental health of parents of young people with learning disabilities is influenced by the severity of mental health problems of their child, indeed more so than the degree of their learning disabilities (Esbensen et al., 2006; Gray et al., 2011; Hastings, 2006; Tonge & Einfeld, 2003). There may also be a small increased risk of psychological problems in siblings of children with learning disabilities (Hastings, 2014a). Getting it right for persons with learning disabilities helps getting it right for their families.
Family carers depend on local services, the third sector, and informal supports for their own support and advice, which is essential but variable across England.
The presence of mental health problems in people with learning disabilities can place an additional strain on resources across a range of budgets. Given the diverse sectors of society in which care and support are provided for people with learning disabilities, additional financial costs may be borne by the NHS, social services, local authorities, as well as families.
In an attempt to quantify the financial impact of psychiatric and neurological issues in the UK, Fineberg et al. (2013) found learning disabilities to be the tenth most costly issue costing €5975 million (2010 prices). The annual cost per person with learning disabilities reached approximately €11,000, comprising healthcare expenditure as well as other direct non-healthcare costs; productivity losses were not included in this figure due to lack of relevant data. As the prevalence of mental health problems in people with learning difficulties is high and this study did not control for them, it is reasonable to expect that some of these costs are driven by co-occurring mental health issues in this population.
Doran et al. (2012) used self-completed questionnaires to estimate the cost of learning disabilities to both families and the government in Australia. This was reported to reach $14,720 billion annually (AUS$, 2006 prices). The study reported that families carry the majority of the financial burden and are insufficiently compensated by the government, with an annual net loss per family of approximately $37,000 and $58,000 for mild and severe/profound learning disabilities, respectively.
In addition to the measured financial impacts, it is acknowledged that intangible costs represent a significant component of burden that is not possible to capture (Doran et al., 2012). Among others, these costs include pain and suffering as well as loss of role performance and social participation, which are likely to increase in the presence of mental health problems.
Strydom et al. (2010) investigated the costs associated with the care of older adults with learning disabilities in the UK. The study measured the cost of care across a range of sectors including health, social care and personal accommodation. The average weekly cost per older person with learning disabilities was estimated to reach £790 (£41,080 per year) with the largest part of it (74%) accounting for accommodation costs. Gender, the severity of the learning disabilities, hearing impairment, physical disorder and mental illness had significant independent relationships with costs. Mental health problems were associated with an additional weekly cost of £202 (2010 prices).
Conclusively, the care of people with learning disabilities incurs considerable costs to the health and social services and the wider community, and the presence of mental health problems is likely to increase the potential financial impact of this population on services. For this reason the prevention and management of mental health problems in people with learning disabilities is of great importance as it is expected to lead to considerable benefits and cost-savings for the individual, their families and the society.
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