Introduction

A decade ago dissatisfaction among people with intellectual disabilities (ID), and their family and paid carers, with mental health service provision was first noted (Cole, 2002; Foundation for People with Learning Disabilities, 2003; Chaplin, 2004; Longo and Scior, 2004; Scior and Longo, 2005). However, it is only relatively recently that the experiences of service users with ID have received greater attention in service development and improvement. In parallel, over the past five years there has been an increased attempt to obtain first-hand accounts of mental health service use from service users and carers (Donner et al., 2010; Chinn et al., 2011; Stenfert Kroese and Rose, 2011; Bonell et al., 2012; Stenfert Kroese et al., 2013). The present chapter summarizes what we know about the experiences of people with ID who require support to meet their mental health needs. It will also account for the experiences of family and paid carers who provide support to people with ID affected by comorbid mental health problems. As there is no unitary service model for treatment and support, evidence on provision by mainstream mental health services and specialist ID services will be considered, where available, as will inpatient and community-based services. Two subgroups who have been identified as finding it particularly difficult to access mental health assessment and treatment are young people with ID in the transition from child to adult services, and people with ID from Black and minority ethnic communities. Hence, their experiences and needs will find particular mention in this chapter. As this chapter’s focus is on the experiences of service users and carers, where possible these are represented in their own words.

Why pay attention to the experiences of service users and carers?

This may seem an odd question to pose, given that policy documents these days emphasize the need to listen to service users and their family and paid carers in evaluating service provision and identifying areas for development. However, the fact that a chapter on service user and carer experiences appears for the first time only in this, the third edition of a highly regarded textbook on ID and mental health, leads one to question why such a chapter seems necessary, or rather why it seems necessary only now. One explanation for this somewhat belated shift away from viewing service user experiences as an optional “add on,” is recognition that it is not only morally and ethically right to ask those who use services about their experiences, but that, not surprisingly, basing improvement to the quality of services on feedback provided by service users may well contribute to improved outcomes (National Institute for Health and Clinical Excellence, 2011). Recent commissioning guidance goes as far as stating that the quality of mental health services should be measured from the perspective of the individual with ID and their family (Joint Commissioning Panel for Mental Health, 2013).

In the UK, guidance by the National Institute for Health and Clinical Excellence (NICE) has detailed the level of service that people using mental health services through the National Health Service (NHS) should expect to receive (National Institute for Health and Clinical Excellence, 2011). This guidance includes the following qualities that services should impart to adults experiencing mental health problems across all care pathways, that is, across community, crisis, and inpatient services: empathy, dignity, and respect; shared decision-making and self-management; and combating stigma. The guidance notes that “improving service user experience is unlikely to incur significant cost, and is more often related to challenging and improving the values or culture of an organisation” (National Institute for Health and Clinical Excellence, 2011). Given that people with ID are increasingly expected to access mainstream mental health services wherever possible (Joint Commissioning Panel for Mental Health, 2013), arguably they should be equally entitled to expect the core service qualities set out above. The limited evidence available on the experiences of people with ID who use mental health services suggests, though, that empathy, dignity, and respect is something individual staff impart, but it is by no means a common experience. Furthermore, shared decision-making and supporting self-management is something many services for people with ID struggle with at the best of times, and find even harder to practice when service users present with additional mental health problems. As core values are helpful but often difficult to translate into everyday practice, this chapter will aim to set out what specific aspects of service provision make for good practice, as perceived by service users and carers.

How do service users with ID and carers experience mental health services?

In trying to understand the experiences of people with ID who require mental health services, it is important to emphasize how bewildering and frightening the onset of mental health problems can be for individuals who, due to their pre-existing cognitive and communication impairments, may find the world around them and their own emotional and mental state hard to understand at the best of times. Similarly, for their families and carers, this is often a time of intense confusion and distress. Some parents vividly expressed this in Faust and Scior (2008):

Against this background, the frustration experienced in response to often very extended but unanswered calls for help made by people with ID, and their family and paid carers, can be fully appreciated. Faust and Scior (2008) reported accounts from numerous parents who felt that, even when they were very explicit about their sense of desperation, their pleas for help often fell on deaf ears. They concluded that “often parents felt that services simply ‘paid lip service’ to their pleas, pretending to take their concerns seriously to placate them … There was general agreement that a crisis had to be reached before services would intervene and offer the appropriate help.” Other studies similarly noted service users’ and carers’ perception that huge barriers had to be overcome to access mental health support (Longo and Scior, 2004; Donner et al., 2010).

Focusing specifically on inpatient mental health services, feeling disempowered, lacking in control, and with little to do for much of the time, are experiences shared by most psychiatric inpatients, regardless of their intellectual functioning (Quirk and Lelliott, 2001; Gilburt et al., 2008). However, admissions to mainstream psychiatric wards appear to present additional challenges for people with ID, including a common tendency to attribute presenting problems to the person’s ID, rather than recognizing their mental health needs, and a misplaced “assumption of competence,” which can lead to a failure to meet even basic needs.

As Chaplin (2009) notes, even in countries where specialized ID services are highly developed, people with ID still not infrequently use general psychiatric inpatient services. A study by Longo and Scior (2004) compared the experiences of 30 adults with mental health problems and their carers of seven general psychiatric wards and three specialist assessment and treatment units in the UK. They found that staff in specialist units were more likely to be described as caring and willing to provide practical help. Those admitted to general psychiatric wards were more likely to find staff unfriendly or neglectful, and to feel disempowered and lacking in freedom. Of note, a sense of isolation was a more common feature of specialist provision, while supportive relationships with other inpatients were more common on general wards.

Opportunities for social contact were similarly rated a positive feature of general psychiatric wards by service users in Parkes et al. (2007) and Vos et al. (2007). However, some service users may be painfully aware of being viewed as different and “deficient” by fellow inpatients, as noted by these participants in a study by Donner et al. (2010): “They judged me. I’m different to them.” and “I had a few friends but most people tormented me and called me names.”

Recognition of the additional and unique support needs of individuals with ID who require mental health care is the fundamental basis for services making reasonable adjustments, now a legal requirement (in the UK). Where this does not happen, people with ID can often be faced with inappropriate expectations. A participant in Donner et al.’s (2010) study observed that “the nurses (on a mainstream psychiatric ward) took the line ‘you’ve got to be independent, you’ve got to do it, I’m not going to do it for you.’ It wasn’t even a case of ‘you do what you can do and I’ll help with the rest’.” A family carer had this to say: “all the others could do things for themselves, he couldn’t and he was just left to it you know. He just didn’t know how to do anything. I went in one day and there was sick all over the floor of his room, he was sitting on the chair with just a pair of pants on and I couldn’t find any clothes for him and he was freezing.”

In contrast, in Parkes et al.’s (2007) study, users of an inpatient service with four dedicated beds for people with ID within a mainstream psychiatric ward described a less frightening experience and greater involvement in their treatment and the decision-making process than in the pre-existing general adult inpatient service. Of note, they were supported by nurses who had received additional training in ID, and access to specialized ID services was high. They also felt able to make friends with fellow inpatients without ID.

Suggestions that specialist inpatient services necessarily offer a positive experience should be viewed with great caution though. A study by Chinn et al. (2011) examined the experiences of 17 individuals with ID placed in out-of-area inpatient settings, often far from home. Of the participants, 80% had a mild ID and 75% had been compulsorily detained. The authors (Chinn et al., 2011) noted that they “were particularly struck by the very negative reports from participants of their treatment by staff. They reported staff using very derogatory language and responding to service users with a lack of respect, fairness and consistency. Descriptions of warm and supportive relationships with staff were missing from most of the accounts” (p. 57). Given that for many participants the admission was triggered by aggressive behavior and physical assaults on others, this complaint by one participant seems very concerning: “Asked for anger management groups once, but nothing happened. I feel I could use something like that to deal with my aggression … nothing seemed to be done about it” (p. 55). Instead, the most widespread intervention in the inpatient units was medication, with all 17 participants taking some form of psychotropic medication.

Perhaps surprisingly, few studies have examined the experiences of individuals with ID who use community-based mental health services. A study of community services for adults with psychosis and ID found that service users, carers, and professionals largely agreed as to what makes for good services but expressed different priorities. The six service users who participated in a focus group prioritized advice, practical help, and having more of a say. The five carers who participated in a separate focus group emphasized the need for good communication between all involved, and for service personnel to know the service user well as a person (Hemmings et al., 2009).

While concerns have repeatedly been expressed about negative attitudes within mainstream services towards providing psychological therapies for this service user group since Bender (1983) first talked of “therapeutic disdain,” little comparative first-hand evidence is available to elucidate how people with ID view the accessibility and quality of therapies received. At a time when people with ID are increasingly expected to access mainstream services, for example to receive psychological therapy as part of large-scale programs such as England’s Improving Access to Psychological Therapies (IAPTs), it seems incumbent to examine to what extent their experiences match the vision set out in good practice guidance (Department of Health, 2009).