CHAPTER ONE
The specialist mental health model and other services in a changing environment
Eddie Chaplin, Dimitrios Paschos and Jean OâHara
INTRODUCTION
Government policy changes over the past 40 years have largely shaped the provision of services for people with intellectual disability (ID). Deinstitutionalisation pushed the emphasis onto community care and independent living, according to the principles of normalisation. This chapter examines the growth of mental health services for people with ID during this period.
The forerunner of specialist mental health services for people with ID and mental health problems is the Mental Health in Learning Disabilities (MHiLD) service in South-East London, which originated in 1983 (as âPsychiatry of Mental Handicapâ at the time) as a response to the need to accelerate the closure of long-stay âmental handicapâ hospitals and to support people with ID to reintegrate in the community. By that time, it had already become apparent that the expectation that community living would reduce behavioural and mental health problems in people with ID was not realistic. In fact, for some people the opposite was trueâthe ârelocation syndromeâ characterised by increased depression, isolation and problem behaviour as a reaction to the move (Bouras et al. 1993) was observed especially in those for whom no adequate planning had taken place.
DEVELOPMENT OF MENTAL HEALTH SERVICES FOR PEOPLE WITH INTELLECTUAL DISABILITY
From as early as 1996, the Royal College of Psychiatrists (RCP) had advocated for specialist mental health services (RCP 1996, 2003). Day (1993) discussed the need for specialist services for a number of sub-specialities that relate to people with ID; this was in spite of concerns regarding the mix of differing diagnoses that could be counterproductive to positive clinical outcomes. There has gradually been recognition of the increased demand for specialist psychiatric services for people with ID, compared to what was initially anticipated at the point of deinstitutionalization. At present there are different service configurations, from traditional models that employ Community ID Teams to manage an individualâs mental and physical health (Hassiotis et al. 2000) at one end of the spectrum to specialist mental health services for people with ID at the other. Although the traditional approach is still preferred in a number of areas, it could be argued it is outdated in that it prevents both integration and inclusion, making it more difficult to access mainstream services from the outset. The model employed by many traditional Community ID Teams could be described as a âone stop shopâ, just as the institutions that went before. In the extremes these models may have an anti-psychiatry bias that drives a resistance to provide specialist mental health services or have input from these teams. Alternatively other models will operate within a mental health framework with specialist mental health teams, either dependent on or independent of generic adult mental health teams. This includes virtual services, where expertise is added to complement existing services.
In comparison to the general population, recent reviews and research have put estimates of mental health problems at over a third of the total ID population (Kerker et al. 2004, 36% and Cooper et al. 2007, 40.1%). Disparities in service provision have led to an ad hoc response over the past two decades, at both local and national levels, as to how best to provide mental health care for people with ID. This has resulted in a mix of service designs offering various degrees of expertise but often without consensus of the wider stakeholder groups, and with inequalities and disproportionate spending on ID services compared to other forms of care (Pritchard and Roy 2006).
Within the UK we are now in an era of systematic audit of specialist services for people with ID. This follows a number of public inquiries that reported a history of abuse and failing services (Commision for Healthcare Audit and Inspection 2006, 2007b). Across the country the reality is broad variations in the quality of ID inpatient services. Such recent disparities and concerns over both safety and quality have led the Healthcare Commission (a powerful health regulatory body in the UK) to call for âsweeping and sustainedâ changes to ID services (Commision for Healthcare Audit and Inspection 2007a). The era of audit philosophy has been brought about largely by the direct results of these and other influential reports. However, concerns have been raised as to what audits can realistically achieve, in that they can drain resources from the areas where there is a problem; inquiry reports have mainly confirmed a history of chronic under-funding and limited resources (Clegg 2008). Currently there are providers in both the independent and public sector, with services built in some cases as a reaction to market trends and need within the public sector. This ability to react and adapt to a sensitive market has made the independent sector within the UK the main providers for certain services, e.g. forensic provision.
Within local services, some of the differences and fluctuations to care pathways can be explained by large out-of-area populations in both hospital and residential settings (Allen et al. 2007). The lack of local provision, for a variety of reasons, impacts on current commissioning practices, with up to 63% of people with ID requiring such services in inner London placed out of area (Emerson and Robertson 2008). Without defined care pathways and because of the lack of local services, there is a tendency that practitioners and clinicians become desensitised to the process of moving people out of area (Vaughan 2003), with non-adherence to the central principles of the National Service Frameworks (Department of Health 1999c), the Reed Report (1992) Green Light Toolkit (Valuing People Support Team/National Institute for Mental Health 2004) and the Mansell Reports (1992, 2007).
BARRIERS TO PROVIDING LOCAL SERVICES AND CARE PATHWAYS
It is recognised that access to healthcare per se is more difficult for people with ID (Michaels 2008). This is in light of a number of publications, particularly Death by Indifference (MENCAP 2007), that highlighted a number of preventable, premature deaths due to failures in the delivery of the current secondary healthcare system for people with ID. A similar concern was raised by âClosing the Gapâ (Disability Rights Commission 2006) about general failings in the primary care provision for people with ID as well as people with mental health problems. Although there is willingness and growing expertise to provide local services, there are still barriers. Arguably the biggest barrier in the provision of mental health services for people with ID is the competing paradigms of mental health and ID services, in terms of philosophical, operational and systems differences. In reality this conflict impacts on eligibility for access to services as well as creating confusion over issues of clinical and financial responsibilities. Compounding this is the new climate of world-class commissioning, involving new initiatives such as âdirect paymentsâ, âpayment by resultsâ and âpractice-based commissioningâ designed to overhaul the system. In spite of this new wave of ideas there is a dearth of specialist ID commissioning expertise and, rather than help, early indications are that these initiatives may hinder care delivery at a practical level. Other challenges are the changing demand placed on the workforce. As safeguards increase for those using services, so comes the emergence of new and extended roles as legislation is updated, e.g. Mental Health Act 2007 and Mental Capacity Act 2005 in England and Wales. These changes have ramifications for wider stakeholders and also pose questions such as how advocacy services might be provided in the future. The demographic of the ID population has changed over the past 20 years; the changing client group is due to a number of factors including people living outside of institutions and living with families in local communities with increased local expectations, higher incidence of mild ID, increasingly diverse populations with more complex comorbidity and increased age expectancy (Mansell 2007). This along, with the issues of ethnicity and gender, has meant that the need for services to respond to the needs of everchanging local communities is now greater than it has ever been.
Central to government and good practice guidance (e.g. Valuing People, Mansell Reports, Green Light Toolkit) is the inclusion and involvement of service users in shaping and developing services. Within the new NHS Foundation Trusts, service user involvement is underpinned within the philosophy of mutual governance. Mutual governance is designed to strengthen quality and effectiveness of internal and external partnerships, with service users central to that agenda (Monitor 2006). Still in many areas service user involvement across all tiers of service is an aspiration rather than a reality. Notwithstanding pockets of excellence, more needs to be done before we can claim to have effected service user involvement across all aspects of health and social care. It is not just in ID services that user involvement needs to improve, but in the wider health and social care arena. Currently there is a lack of research, monitoring and evaluation with regard to user involvement in social care. Although it is considered best practice there is still little evidence on a national level to inform us of the impact of user involvement (Carr 2004). Similarly in health services, the National User Involvement Project (Joseph Rowntree Foundation 1999), a four-site project that aimed to get service users involved in commissioning decisions, found that apart from raising some awareness there was difficulty in involving service users in the decision-making process. There are a number of reasons as to why this might be, including access and lack of training for the role. Today there is still little in the way of consistency regarding user involvement. A service user network event concluded that to make user involvement a sustained reality there still needs to be more campaigning and negotiation (Branfield and Beresford 2006).
The ability to expand on and sustain user involvement is not always in the control of the clinical team; it is often in the control of the wider organisation. At the Estia Centre an example of an initiative that has been able to be sustained for a number of years is the âTuesday Groupâ. This is a specialised user group for people with mental health problems and ID. This group meets outside of the Estia campus and is hosted within the local MENCAP shop. It meets fortnightly with themed meetings such as mental health promotion and keeping safe. The groupâs future is protected in terms of being part of the core business planning, and this security has seen it develop to become in demand and active at conferences, local and national events as well as being invited to teach and lecture. The success and positive experiences in working with this group have led to initiatives such as employing members of the group on an as-required basis for tasks such as service audits and consultation events. Other attempts at user involvement have been more d...
