Learning disability

Note on terminology: A learning disability is a reduced intellectual ability (such as ability to understand new or complex information) and difficulty with everyday activities (such as with household tasks or socialising) (Mencap, 2022b; Whitaker & Porter, 2002). Learning disabilities starts before adulthood and impact people for the duration of their lives (Mencap, 2022b; Whitaker & Porter, 2002).

The Cambridgeshire and Peterborough Joint Strategic Needs Assessment: Health of Adults with a Learning Disability (2023) can be accessed here.

It is estimated that around 40% of adults with a learning disability experience a mental health problem at any point in time (Cooper et al., 2007). Exact estimates range from 15 to 52%, depending on which diagnostic criteria (Mencap, 2022a).
Compared to the general population, people on the learning disability register are:
- Much more likely to have been diagnosed with a SMI: 8% have a SMI diagnosis, compared to 0.9% of general population (Office for Health Improvements and Disparities, 2022).
- As likely to have depression: 13.3% have an active diagnosis of depression, compared to 12.0% of the general population (Office for Health Improvements and Disparities, 2022).
36% of children and young people with a learning disability have a mental health condition (Emerson & Hatton, 2007).
- This amounts to 1 in 7 young people with mental health conditions also having a learning disability (Lavis et al., 2019).
- The increased risk for mental health problems is apparent by age 3 (Lavis et al., 2019).
- Children and young people with learning disability are also more likely to have multiple mental health conditions (Lavis et al., 2019).
Further research is required to determine how the prevalence of mental health conditions in people with a learning disability varies by gender, level of disability and physical health.

Local population

Around 2.2% of adults in Cambridgeshire and Peterborough have a learning disability (Public Health England, 2016).
However, just 0.5% of adults (4,686 people) are on their GP’s learning disability register (Office for Health Improvement and Disparities, 2023).
The importance of data collection to improving health and wellbeing was highlighted in the Learning Disability Health Needs Assessment (Cambridgeshire County Council & NHS Cambridgeshire, 2013). This report proposed that GPs and community learning disability teams should collaborate to develop a local register of people with learning disabilities.

Risk factors for poor mental health

People with a learning disability face often multiple risk factors for poor mental health, including social disadvantage, poor maternal mental health and exposure to adverse life events (Emerson & Hatton, 2007).

Stigma and discrimination

Self-stigma around learning disabilities is associated with poorer quality of life, and symptoms of anxiety and depression (Ali et al., 2015)
Many young people with a learning disability are worried about their future, including if they will be able to lead an independent life (Lavis et al., 2019)

Higher rates of adverse life events

People with a learning disability are at an increased risk of experiencing abuse (Cambridgeshire County Council & NHS Cambridgeshire, 2013)
There is a strong link between difficult life events and increased risk of mental health conditions (Bond et al., 2019)

Social support and coping skills

People with a learning disability are at an increased risk of social exclusion (Cambridgeshire County Council & NHS Cambridgeshire, 2013)
Young people with a learning disability are more likely to feel lonely than their peers (Lavis et al., 2019)
Maladaptive coping skills are strong predictors of depression (Austin et al., 2018)

Physiological and genetic factors

People with a learning disability have poorer overall health (Equality and Human Rights Commission, 2016)
Some learning disabilities are associated with high prevalence of specific mental health conditions, such as dementia in Down’s syndrome and affective psychosis in Prader-Willi syndrome (2016, 2016)

Access

Some people with learning disabilities can be supported by mainstream mental health services, whilst others may require specialist support.
A high proportion of children and young people with a learning disability are unable to access mental health support, with one survey of children with a learning disability finding that (Lavis et al., 2019):
- Only 28% who had a mental health problem had any contact with mental health services.
- Many young people had experienced long waiting times for mental health services: over a quarter (23%) had waited over 6 months to be referred to specialist services.

National research highlights healthcare system barriers to accessing mental health services, such as:

Failure to identify people with a learning disability in health systems, so that adjustments are not made in advance (e.g. overly complex language in invitation letters) (The Equality and Human Rights Commission, 2017).
Discriminatory attitudes from healthcare staff (The Equality and Human Rights Commission, 2017).
Lack of expertise around learning disability from healthcare staff (The Equality and Human Rights Commission, 2017).
A lack of adjustment for the literacy and communication difficulties experienced by many people with a learning disability (The Equality and Human Rights Commission, 2017).
Diagnostic overshadowing, which is when symptoms of mental health conditions are seen as being inherent to the person’s learning disability (The Equality and Human Rights Commission, 2017).
Over-reliance on carers to interpret symptoms (Hanlon et al., 2018).
People with a learning disability rarely being supported to learn self-care to manage long-term health conditions (Hanlon et al., 2018).

Experience

It has been estimated that 30,000 to 35,000 adults with a learning disability and/or autism are taking psychotropic medicines in England, despite not having any health conditions which these medications are used for (NHS England, 2017b). Research has shown that on an average day for adults on the learning disability register, (NHS England, 2017b):
- 17% take antipsychotic medication.
- 17% take antidepressants.
- 7% take drugs used to treat mania and hypomania.
- 4% take anxiolytics.
- 3% take hypnotics.
These drugs are often used to ‘sedate or calm’ individuals who present with behaviour that is perceived as challenging, rather than dealing with the underlying cause of the problem or actively improving people’s quality of life (Royal College of Psychiatrists, 2021). Many of these medications have side effects that are damaging to physical health, such as giving a higher risk of cardiovascular disease (Royal College of Psychiatrists, 2021).
Many people with a learning disability end up being admitted into inpatient mental health care, when their admission could have been prevented or shortened if they had received better community support (The Equality and Human Rights Commission, 2017).
Many people with a learning disability end up being admitted into inpatient mental health care, when their admission could have been prevented or shortened if they had received better community support (The Equality and Human Rights Commission, 2017).
- The average length of stay for people with a learning disability and/or autism who are currently in inpatient units in 5.4 years (Mencap, 2019).
- Restrictive cultures, poor physical environments, unskilled staff and understaffing often mean that hospitals are not therapeutic environments for these patients (Care Quality Commission, 2022).
- There is an overuse of restrictive practices in inpatient care (Care Quality Commission, 2022).
- People with a learning disability and their families have too little involvement in decisions around admissions, discharge, and treatment at mental health hospitals (The Equality and Human Rights Commission, 2017).
Children and young people with a learning disability report (Lavis et al., 2019):
- Being passed between different services and experiencing fragmented care.
- Not feeling confident that people will recognise their mental health needs.
- Mixed experiences of care at GPs, in terms of their knowledge of learning disability and mental health.
Children and young people with a learning disability can ‘fall through the gaps’ between child and adult services, if they struggle to meet the criteria for adult learning disability or adult MH services (Lavis et al., 2019).
There are currently no evidence-based of approaches to treating mental health problems in children with learning disabilities (Lavis et al., 2019).

Outcomes

People with a learning disability face significant health inequalities, including having a life expectancy that is 20 years lower than in the general population (The Equality and Human Rights Commission, 2017).
The local recovery rate from NHS Talking Therapies (previously known as IAPT) for people with a learning disability is just 30%, substantially lower than the national average (41.0%) and recovery rate for people who do not have a disability (52%)(NHS Digital, 2021).

Table 27: The proportion of people who have consistent recovery, improvement and deterioration in their mental health for referrals for IAPT who finished treatment in 2020/21, across C & P and England. Data source: (NHS Digital, 2021)

Additional resources

References

Full list of references is included at the end of this chapter.