Parts of this chapter have been reproduced with permission from Oulton et al.1 This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: https://creativecommons.org/licenses/by/4.0/.
Despite comprehensive evidence of health inequalities for adults with LD, including poor practice, discrimination and abuse in hospitals,2–5 to our knowledge there has yet to be a comprehensive review of how well hospital services meet the needs of children and young people (hereafter referred to as children) with LD and their families. A major uncertainty is when the inequalities known to exist for adults with LD start to emerge. Limited qualitative evidence of parental dissatisfaction with the quality, safety and accessibility of hospital care for children with LD exists (see Chapter 3). However, the extent to which these parents’ experiences differ from those of parents of children without LD is not known. Moreover, reports of the views and experiences of children with LD are almost non-existent in the literature.
This study set out to compare how services are delivered to, and experienced by, children with long-term conditions, with and without LD, and their families, to see what inequalities exist, for whom, why and under what circumstances. The cross-organisational, organisational and individual factors in NHS hospitals that facilitate or prevent children with LD and their families receiving equal access to high-quality care and services were explored. Our aim was to generate examples of effective, replicable good practice.
Definition and prevalence
A long-term condition is defined as a health condition that requires ongoing management over a period of years.6 About one in seven young people (15%) aged 11–15 years in the UK reports that they have been diagnosed with a long-term medical condition. The more common conditions that affect children and young people include diabetes, asthma, epilepsy, severe allergies and anaphylaxis. Among those with a long-term condition, approximately 28% require medical follow-up, of whom approximately 6% have a disability. A proportion of these children will also have a LD, which is a neurodevelopment condition that covers a wide spectrum of impairments; various definitions are applied in the UK and internationally. In the White Paper Valuing People,7 the Department of Health and Social Care states that LD includes the presence of:
- a significantly reduced ability to understand new or complex information or to learn new skills [impaired intelligence; intelligence quotient (IQ) of < 70], with
- a reduced ability to cope independently (impaired social functioning).
These impairments start before adulthood and have a lasting effect on development.
Although IQ has historically been the defining measurement of LD, it is now recognised that a low IQ is not, in itself, a sufficient reason for deciding that an individual should be provided with additional health and support. This message was echoed in the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5),8 in which the term ‘intellectual disability’ (commonly used to describe LD internationally) replaced ‘mental retardation’ and IQ test scores were removed from the diagnostic criteria to prevent these being overemphasised in terms of a person’s overall ability.
The definition includes children with autism who also have LD, but it does not include those who have specific learning difficulties that may impair educational attainment, such as dyspraxia or dyslexia, but who are within the average range of intelligence or those with developmental delay who are late in reaching some or all of their developmental milestones. It is also important to distinguish children with LD from those with neurodiversity, who are of average or above-average intelligence.
Causes of LD can be genetic, or due to prenatal, perinatal and postnatal environmental factors.9 There is no definitive record of the number of people with LD in England, but the estimated prevalence of LD in children and young people is 2.5%.10 It is widely acknowledged that the numbers of those with severe intellectual impairment and multiple/complex long-term problems will continue to rise by 1% each year.11
Health needs, inequality and inequity
In terms of their health, it is widely reported that disabled children are a vulnerable population12 whose care needs are significantly greater than those of other children.13 However, accurate information about the prevalence of some impairments and health conditions in children with LD is limited, possibly because the population is heterogeneous, the terminology used varies and the main focus of recent efforts to reduce health inequalities related to LD has been adult care.
Much of the available evidence related to children comes from work carried out by Emerson et al., including a review of the UK literature on the health inequalities experienced by children and young people with intellectual disabilities.14 Emerson and Hatton15,16 reported that ‘the risk of children being reported by their main carer (usually their mother) to have fair/poor general health is 2.5–4.5 times as great for children with learning disabilities as for other children’, a finding only partially accounted for by differences in socioeconomic status.17 In addition, children with LD are almost twice as likely to report three or more health problems as children without LD.16 More recently, a ‘disabilities terminology set’ was developed and used to quantify the multifaceted needs of disabled children and their families in a district disability clinic population.13 Compared with children without LD, children with LD were found to have significantly more needs overall, including more health conditions, health technology dependencies and family-reported issues, and were more likely to need round-the-clock care.
As well as having intellectual impairment, a large proportion of children with LD will have sensory impairments, such as vision or hearing impairment,18 and/or communication difficulties.19 They also have higher rates of all types of incontinence, sleep disorders, obesity and epilepsy14 than children without LD. The prevalence of epilepsy among people with LD is at least 20 times higher than among people without LD, and the seizures they experience are commonly resistant to treatment.20–23
In terms of mental health, children with LD are at significantly increased risk of certain types of psychiatric disorder (prevalence of 39%) compared with children without LD (prevalence of 8%).24 Some children with LD also have autism spectrum disorders, although estimates of prevalence of these vary considerably.14 There has also been a reported threefold increase in the risk of behaviours that challenge in children with LD compared with typically developing children,25 a major contributing factor being the existence of a communication impairment that may limit the child’s ability to express frustrations or explain any underlying emotional/physical distress or other external factors.
Children with disabilities experience more frequent and lengthier hospital admissions than children without disabilities,26 which has an impact on school attendance.17 The ability for children with LD of all ages to understand information about hospital care and treatment may be limited; they may not be able to communicate their needs verbally and may need additional support with all aspects of hospital life. Although many children will find it hard to cope emotionally when they are in an unfamiliar hospital environment, those with LD who display behaviours that challenge27 may find it particularly difficult.
Policy
The publication of Death by Indifference,2 about six people with LD who were seen to have died in hospital unnecessarily, triggered an independent inquiry into access to health care for adults with LD, which revealed significant system failures and less favourable treatment of these patients than those without LD, resulting in prolonged suffering and inappropriate care. The report of this inquiry, Healthcare for All,3 identified the invisibility of people with LD within health services, with a lack of priority given to identifying their particular health needs. A lack of training, combined with ignorance and fear, were recognised as compounding negative attitudes and values held about people with LD and their carers. Furthermore, these were notable factors in failing to deliver equal treatment and to people being treated respectfully and with dignity.3 A need to strengthen the systems for assuring the equity and quality of health services for people with LD at all levels was identified. The limited direct reference to children with LD in the report presents a mixed picture. Services were praised for ‘providing all-round care’, yet access to general health care for children with LD was reported as being ‘as problematic as it appears to be for adults’.
The resulting Confidential Inquiry into Premature Deaths of People with Learning Disabilities (CIPOLD)4 found that people with LD die, on average, 16 years earlier than people in the general population. Furthermore, it emerged that ‘more people with LD died from causes that were potentially amenable to change by good quality healthcare’.4 All aspects of care provision, planning, co-ordination and documentation were found to be significantly poorer for people with LD.
NHS England subsequently commissioned the continuing Learning Disabilities Mortality Review (LeDeR)5 programme to monitor deaths among people with LD.
In 2014, the Care Quality Commission introduced a new regulation and inspection process for health and social care services in England, which assesses whether or not services are safe, effective, caring, responsive and well led. Care Quality Commission best-practice guidelines now advocate that ‘all children’s units to have access to a senior learning disability nurse who can provide information, advice and support to health care staff involved in the care of such children and who can help manage difficult situations’.28
Little evidence exists of the extent of LD nurse provision in children’s hospitals or the nature and impact of this role. A recent NHS benchmarking exercise29 aimed at providing a ‘broad assessment of the state of NHS learning disability services’ failed to include data concerning children’s inpatient LD service provision. As stated in the Royal College of Nursing30 position statement on the role of the LD nurse, ‘National work needs to be undertaken by each UK country as a matter of priority to profile the existing learning disability nursing workforce and identify future requirements’ (reproduced with permission from the Royal College of Nursing).30 A Department of Health and Social Care-commissioned review by the National Council for Disabled Children31 revealed a number of staffing issues related to the care of children and young people with complex needs and behaviour that challenges involving mental health problems and LD and/or autism. A key finding was the lack of recognition and value placed on the specific skills needed to work with these children, with no professional group identifying themselves as being wholly trained in one or more of their needs. Furthermore, specific issues surrounding the recruitment of nurses with LD education and training were identified, including the possibility that ‘it was only when they were on shift that care plans for this group were implemented’. A need to understand the gaps in staff skills in caring for these children and take necessary action was highlighted.
A key strength of our study is that is has been designed to generate evidence of the issues that affect all children with long-term conditions and those that are particular to children with LD. This evidence is needed to understand the context for making reasonable adjustments for children on the basis of their specific intellectual, emotional, social and physical needs, helping to ensure that resources and interventions that promote equality are better targeted to those who need them, when they need them.